disability grants

Your Stories

Disability Grants and Discrimination at work

Your stories, covering issues such as disability discrimination in the work place, available disability grants, local government ombudsman and council restrictions

Funding For A New Van
URGENTLY AND DESPERATELY IN NEED OF HELP
struggling with finance and have 2 with adhd one has autism
Just completed first year of university
Hope for my son
welldone!
Our Journey With our little Ava Mae
He Needs Your Support.
rachel turning blind
Serena and me
JJ
My 13Month Old Soldier
Denied a Chance
No where to Turn
a lill gift...
My 42yr old daughter, aged ten ?
Joey
Bauer's Rare Lymphatic Story.
Keira
Jojo's Story
My brother
CCHS
clift lip and palate
Tetrology of Fallot
No Edcation for You
Olothando: Helping to educate a disabled little boy.
Sick of Struggling
Hope for the hopeless
Wesley & Moebius Syndrome
My Dakota
Giving Alex a voice for the first time
My Family's Exhaustive Journey
Distressed and Depressed
Charlie super star
autism-selective mutism
shot victom
Gods Lil' Angels DX: Alobar Holoprosencephally
my daughter
Jack and Jill Childrens Foundation
Brave Jack
The Echoes Foundation
Kel is Growing Up
Family in need
Disabled Single mom with special needs toddler, left behind.
Summer'Sky Jackson
Moriah's Life
Visually Impaired and new in Alabama
A Battle to Live Free
My Challenging Life
It is a matter of perspective
Joel makes the sun shine..
Raising a disabled Grand daughter.
Sierras Dream
Ella-mai Bale di george syndrome / cerebal palsy
my goddaughter
The Help He Needs
Alex's and my story
A HELPLESS MUM
Kathleen's Struggle
My son with Cerebral Palsy
my special angel
determined
9 yr old Dwarf ( spondyloepiphyseal dysplasia)
Raising Rachel
Help to child for live
The Wings of Love
Billy's Fight
My Trevor
Mary My Little Warrior Angel
our special needs child
My son with Cerebral Pasly
My little boy Jonathan
My Wonderful Ashley
My Special CHild
Accessing appropriate education
Jack & Ben's Story
Just a shower!
Losing my battle
Struggle to get my son into residential school
My Child Has Brittle Bones (O.I.)
Fight for Ryan .......3 years on
Wishing to walk!
The LaChris Connection dba The LaChris Foundation
Keith
One day at a time
The missing piece of my complex jigsaw
he is my simon!!
Seeing Through
Services
Nia Janel Harvey
Chris
Dustin's future
mom of loving autistic sons
Education for the disabled
POST 16 PROVISION
undiagnosed disabled son of 16 years old
My special son
dissabled children are inteligent too
Dylan (the love of my life)
henriettas dream
Candace's life
Jessica & Lee - Before & After
fighting for housing
Brittle bones disease
my special boy
My child being denied home studies.
Special Needs Units
James aged 11
understanding
Fight for Ryan
my two boys
Problems In Getting Help With My Daughter
My Son
A 21-year struggle
A letter written to the Prime Minister in May 2004:


Funding For A New Van

Hello, we are in search on funding for a new wheel chair van for Jonah our son who has Spastic Quadlapledgic Cerebral Palsy. He was diagnosed at 6 months old, and requires all of his daily needs be preformed by his parents and family. We have so far raised 1/2 of the money needed $20,500. Total cost with modifications is $53,000, will you help us reach our goal and dream. We need this van to continue to be able to transport Jonah to appointments, field trips, family vacations and church. Please help.

URGENTLY AND DESPERATELY IN NEED OF HELP



My daughter, Favour, was born in Nigeria on October 5th, 2005. Initially, my wife and I did not suspect anything was wrong with her. However, we observed that she started to walk very late. We also realised she was only blabbering for a long time- no meaningful combination of words were forth-coming even at age three.
Favour is nine years old now. She is still unable to talk - only muttering some unintelligible sounds. Apart from this, she drools and consistently scratching and biting her hands. she cries a lot too and, lately, occasionally mildly violent and experiences seizures.
Moreover, there are many things she is still unable to do herself. For instance, she cannot hold anything, feed by herself, run around like her peers (her doctor says she has a poor gait) or focus her attention on anything or anyone for long. Worse, she till makes use of pampers!
According to the doctor's diagnosis, my daughter is suffering from autism and cerebral palsy. I have taken her to some of the best medical facilities in Nigeria in the past years but her situation seems to further deteriorate. I went as far as contacting a hospital in London but up to this moment, I have not been able meet up with the financial requirement.
This is the story of a very tormented father (and mother) who, on daily basis, helplessly watches his child that he loves with a great passion go through such intense suffering and humiliations.
Depression has been my lot lately. But my spirit has been unusually high since I have been visiting your site and seeing your positive impacts in the lives of hitherto hopeless people all over the world.
I sincerely hope you will extend your kindness to young Favour so that she can start to live a worthy and meaningful life.

struggling with finance and have 2 with adhd one has autism

I'm a single parent who is struggling imensly financially and have 2 disabled children and an older one with bipolar I have not internet no computer for them and not enough money to pay the bills I'm constantly at appointments I'm in ill health and feel so low can anyone help me

Just completed first year of university

My son Connor was one of the first in the UK to have secretin infusions to treat his Autism.

Connor went to SEN nursery, head butted, lined things up, flapped his arms, no eye contact and hit everyone. We began to learn makaton to get him through.

At the age of 5, Connor had his first infusion, the very same day we saw his autistic traits lesson. Six months later he had another infusion again his traits lessoned even more. Over the next few years he had repeated infusions at six months intervals.

We were thrilled with his results.

Connor tried main stream for a while, but moved to a special school at the age of 10.

Two years ago he left special school, went to a mainstream college, and has just completed his first year at university.

I'm so impressed with him.

Although expensive, I don't regret the treatment Connor had from Dr Tahmne at the Leicester Nuffield. Sadly Dr Tahmne has now retired. He would be thrilled with Connor's development.

Hope for my son

Michael was not born severely disabled, he caught infections in hospital which took away his childhood and they conveniently made any evidence disappear.
It has been a long and ongoing struggle to get any help. Michael is now 15 years old, he cannot talk or cry like other children he is not able to use sign language which makes it so much harder to no when he is in pain or ill. He is visually impaired and was on medication for seizures from 2 months old. Around november 2012 Michael fell ill and was bed ridden for about 9 months, I felt right from the start that it was the medication making him ill but his consultant disagreed and kept changing his medication, I kept on to his doctor asking him if michael could be taken off the drugs, and phoning him up, at the time it felt like Michael was just a number to them. then August 2013 his doctor decided to listen to me and Michael came off his drugs for seizures. Most of the time Michaels seizures are not any worse than the ones he was having with the medication but every 2 to three months he has a big seizure which he needs to go to hospital for. Michael can walk but only a little and over the years anything i a needed for michael has come from charities. I needed a powered chair for Michael as he was getting so big to push, we like to take him with us for walks as he loves being out. The NHS would not give us prescription towards the cost of a chair because they said the chair would be for our benefit not his. Michael has respite which at the moment is good but we do not know how long for as they have already tried to close it down.

welldone!

I came across your book Henrietta,s Dream which once i started reading it couldn,t stop reading. I work as a learning assistant with children in need. Though i syudied at the university your book inspired me not to give up when i feel i am not succeding in my work. I fully agree someone has to be the voice for these children and though policy makers say they are investing and up grading their status when you dig deep many recources are wasted as they are not properly distributed to fully meet children,s need. It wS an enjoyable book keep up the good work . I wish manybeautiful dreams that turns into realities for your children and many many thanks for your work wish all the stake holders and policy makers give time to reflect on what people like you go through day by day and with simple measures makes your life little easier after all people like you have every right like us to enjoy life as much as possible.

Our Journey With our little Ava Mae

Ava was born with very rare genetic disorder called Joubert Syndrome, there are only 417 cases reported in the hole world. She was born on March 6,2012 weighing in at 7lbs 13oz. She was born with extra fingers and toes and nodules on her tongue. She also was breathing very rapidly and at times didnt breathe at all and then would try to play catch up. She was intubated shortly after birth, and trached shortly after that being diagnosed with tracheal bronchial malacia or floppy airway. She also has a feeding tube for eating. Ava was in the hospital for 5 months after birth until they got her stable. She is now home with us still trached and ventillator dependant along with gtube for feeding. We have a long road ahead of us. Mom and dad are both working both find it hard at times to manage with all the bills along with Avas medical needs. They also have a 4 year old names Haleigh who tried to help out as much as she can. Ava is our Rare child !

He Needs Your Support.

Am from Ghana. And lives within the Ashanti Region (kumasi) . There is a 7year old boy who lives with parents at my locality who needs serious support from you reading this story.
He had his legs and hands with no strong bones to be able to walk nor hold. Unfortunately the family is really poor and till now still walk on the floor without any wheels.I really cries anytime i sees him and try my best with the very little I have since am a student and managing is not easy for me.
His father is of no proper job as the mother is unable to work because of the son' situation.
what touches me much for publishing this to you is that , the boy is really brilliant and able to write with his mouth and have very good writing. He is going to be a very great hero if he get support with his education as and the little I can do is to spread his situation for you to help him achieve his future carer. Anybody who can help him either to get an organization to look after him or support his situation should contact this e-mail (frankytaylor2003@gmail.com) so I can forward his pictures and videos for personal view . Please help me let's build him 2 be a better person in the future and the lord will never forsake us . Thanks for spending your precious time reading .

rachel turning blind

RACHEL IS BLIND IN ONE EYE AND THE OTHER EYE HER SITE IS ONLY 17%.

WE NEED HELP FOR OUR LITTLE GIRL ONLY 8 YEARS OLD. SHE NEED EQUIPMENT TO SEE WHAT HER TEACHER EXPLAIN IN FROND OF THE CLAS A COMPUTER AND A BIG SCHREEN TO HELP HER IN SCHOOL.

WILL YOU PLEASE BE SO KIND TO HELP US, OUR MEDICAL AID IS FULLY USED FOR HER AND SHE NEED A OPERATION IN THAT EYE HOW CAN SEE ONLY 17% AND WE DONT HAVE THE FUNDS FOR THET PLEASE HELP RACHEL

HERLIEN 084 395 5405

Serena and me

My name is Erin and I am a single mom to 5 year old Serena. Serena is a beautiful girl with a usually sweet and caring personality. She has multiple life long and life altering disabilities since prior to/just after birth. These include Jacobsen's Syndrome, severe epilepsy, brain damage, Microcephaly, cerebal palsey, Hydrocephalus, oxygen and feeding tube dependant, and more.
She was not diagnosed until 3-4 days old & this was only after she coded at the hospital (I was not informed she had coded until 4 hours later!!!) and finally was transfered the next day to a childrens hospital (only after arguing and begging the doctors to transfer). Since then it has been a struggle with doctors and hospital staff to treat her and myself with the dignity & respect we deserve and also in several cases to even medically treat Serena.
Serena's insurance will no longer cover the best of two childrens hospitals near us which forces us to go to the other hospital. It wouldn't be so bad if this hospital would actually listen and pay attention and care about us. More than once they have sent Serena home from the ER struggleing to breathe, running fevers of 102+, a d requireing 8-10 times her normal rate of oxygen.....telling me to take her home because nothing is wrong. On 3 occasions we returned in less than 5 hours and Serena was placed in intensive care on 15 times her normal need of oxygen!!!
Being that I am a single mom with no vehicle & Serena needing constant round the clock care I've not been able to have a job. This leaves us to survive solely on her SSI check, food stamps, and housing aid. I see no relief in sight to be able to return to work, pay off huge debts, gain better health care, or support to move closer to family support.

JJ

Getting our 10yr old son diagnosed with Tourette's was a 3 year process. After having a nasty bout of Strep Throat, JJ started dry hacking. Teachers were telling me to send cough drops with him to school. During that time period he was also diagnosed with asthma (coughing/wheezing after physical exercise). Tourette's and Asthma tend to encourage eachother too much. He showed signs of Autism, anxiety, and depression. Through an Autism Screening (2 psychologists at once) he was diagnosed with severe anxiety disorder. It made total sense after that appointment!

He is on Clonadin and Zoloft. He has come out of his shell and tries to interact with his peers every day. He used to hang out at the fence everyday at school and sit and stare at it. For many years he couldn't even remember what he learned in class. He now tells me about his day wether it be good or bad. Our goal was not to give in to medications, however his emotional/social health was too important to ignore.

He still has waxing and waning tics but not as severe. He has blossomed in the classroom. He concentrates a little better and jokes in class! His grades are improving and he is socializing with his peers. He even participates in schoolyard games now.

I always knew JJ had something special to him. Even though we continue to have challenges we have learned to not only cope as a family but enabled JJ to express himself and dissipate his cloud of FEAR.

As parents, we have learned many things about Tourette's Syndrome. It's not just about tics and swearing, it is so much more! I feel it is important to share. Listen to your gut as a parent. Be persistent with their educational, physical, social, and psychological needs. To do that, your child should be evaluated by a knowledgeable Pediatrician and a Psychiatrist. Follow up with a Psychologist for counseling. Make sure your child has the proper classroom modifications in place (ie., 504 Plan). Keep open dialogue with his/her teacher.

Your Team should include: Pediatrician, Psychiatrist, Psychologist and sometimes a Neurologist, and importantly, family support.

My 13Month Old Soldier

Let me start by sayin i am a single mom of (5) 3 of tha 5 have my 14yr daughter has diabetes 3yr son has asthma n last but not least my 13 month old son has sickle cell disease.Needleess 2 say that i do not get any type of assistant 4. I'm a stay at home mom b/c i can not afford 2 pay 4 babysitting fees 2 look 4 me a job. So if u could help i would b muc

Denied a Chance

My daughter is now 2 and a half, but at 6 weeks old, she suffered a traumatic brain injury caused by her father. 40% of her brain is now liquid, and not brain. She suffered 18 broken bones, seizures, a stroke, and was not expected to make it. She did, but not without problems. She was put into therapy at 6 months old, as she cannot control much of her body. She still cannot sit up on her own or even roll over. She came home from the hospital with a feeding tube, however with therapy, she has had that removed and can now eat baby foods with someone feeding her. Recently, she has been taken off the therapy schedule. I have called numerous times and her insurance does pay for all of her therapy, and yet they have decided that they do not have room for her on their schedule. I have tried other therapy centers, and I have been told that she needs to remain where she currently is. But the problem with that is that she isn't anywhere and hasn't been in months. The therapy center is making it impossible to get her in anywhere else to get the help that she needs. Not only is her therapy center not helping, but she has now been kicked out of the daycare center she was in. They decided that after 2 years of taking care of her, she is too needy. They would put her in a jumperoo when I dropped her off in the morning, and other than when she was being fed or needed her diaper changed, she stayed in it all day or was moved to play on the floor. She can entertain herself, and yet they have decided she is too needy. Most other daycares in the area won't even try to keep her because of the words "special needs." There need to be more resources available for parents of special needs children. Especially when the disability doesn't have a name. I have found many resources for parents of children with palsy, or spina bifida, but my daughter doesn't have any specific disability. She just is disabled.

No where to Turn

I am a single mother of four challenged boy's. I have a 22 year old with congenital heart disease, A.D.H.D. mental retardation and parinoid schizophenia who is also medically fragile. he has a difibulator/pacemaker implant and Scholiosis. I have a 17 year old son who was diagnosed as Bipolar with pshychoitc features, learning diasbled and oppostional defiant, he is also an epileptic. My 14 year old is Autistic and has A.D.D Last but certianly not least is my 12 year old who also has A.D.H.D. All my children take medication and need constant supervision therefore I am unable to work or find time for my self. My oldest has graduated from B.O.C.E.S three years ago and we have not found any day program for him to attend; he is so unhappy and board. I have no support in my community, no programs for my children , no programs for mother's like myself to help me in times of crisis. I am fighting depression everyday and I am so worried that soon I may need medication in order to cope with the overwhelming demands of my children. My life is very sad because I don't see any help for my children. What can I do? Where can I get help? Who can help us? What will happen to my children when I am to old to care for them? How can I find a way to work in order to but them nice things or take them on a vacation?

a lill gift...

I am a single mom to 5 children..I also am a full time student trying to make ends meet..My youngest Larick has what they belive is cystic fibrosis..He has chronic breathing and immune issues..At least 2/3 times a mth he has pnuemonia or bronchitis..HE is on 7 differnt meds..The doctors are baffled on What this may be..He has sleep apnea at night...He has to go out of town to his specialist to get help..Im very very low income and so this is a challenge for me..Im about to loose my only car that gets my son to all of his doctors appts..Im in desperate need of help..He is the sweetest happiest little boy..I just want him for once to feel normal..And for or me to feel relief knowing I can provide for his needs..

My 42yr old daughter, aged ten ?

My Daughter has over the past decade gone through trauma, regarding , selling and buying her house. changing jobs through closure and over the past two years suffering from self-mutism , she has been sectioned twice and is now awaiting possible help from our local clinic, because of her inability/ choice not to speakthe locacal Clinic found it difficult to treat her however she does write and has recently submitted an eleven page resume of her life so to speak from the age of ten when other trauma began which brings us to the present day

Joey

My son was born with a cleft lip and plate we use to have insurance but my husband business went backrupt and we have not insurance and my son does not qualify for medicaid. Joey is having his last surgery because he is 19 and the bone grafts they did previously did not work so he needs a bone graft to put his teeth in the front. He also needs his lip/nose done but we cannto afford the treatment and he still has his braces on for longer than he should have because we cannot afford to pay for his treatment. Please if you know of anything foundations that can help let me know you can email me.
Thanks,
God Bless

Bauer's Rare Lymphatic Story.

PLEASE SHARE, REPOST & TELL MY SON'S STORY, ANY INFORMATION ADVICE OR MIRACLE WOULD BE GREATLY APPRECIATED.

Bauer is my six year old son, he has been diagnosed with:

Primary Lymphangiectasia
Previous bilateral Chylothoraces (bilateral pleurectomy)
Lymphedema lower limbs & genitals
Autism spectrum disorder

Medication: Septrin Prophylaxis (winter time)


Bauer has several leaks & collections all over his body, the worse being when it was leaking into his chest resulting in him having to be nil by mouth & on TPN for several months & having to have open chest surgery to both lungs & needing to be ventilated for sometime.

Now his daily problems include swollen limbs & extremely swollen genitals, which effects his mobility, & is particularly worse towards lunchtime & throughout the afternoon.

In a Lymphoscintigram report where dye was injected between Bauer's toes into the lymphatic channels, its was described as a ''very abnormal study'' in the report there is mention that his liver & spleen were not visualised & should have been, also the specialist was confused at the visualisation of the kidneys, & that lymph should not have been seen in these, this is a real concern.
Bauer also has lymph collections surrounding his lower oragans, in his abdomen/lower bowel & in his skin tissue.

Bauer is also diagnosed with Autism & receives a specialist education at a Special Needs school.

Before the lymphatic problems were discovered he had cellulitus a few times as a baby, I pushed for this to be investigated, but it never was, then when my son couldn't breath & having been sent home time & time again with antibiotics being told ''its just a chest infection'' I demanded they xray his chest...when xrayed, there was that much fluid in his chest, his heart had been pushed out of place.

We are currently waiting to see a specialist dietician, we already eat as healthy & lean as possible at home, but we need some extra support. His Consultant is considering a full MCT diet.

Also in the next couple of weeks we are seeing a urologist as Bauer's genitals are so swollen, his penis is deforming & they are going to explore the possibility of a circumcision to try & relieve some of the bending in his penis from the pressure. Also his scrotum really needs looking at thorough to make sure his general development is not being effected.

His Consultant is keen to arrange some kind of detailed CT scan to check the health & over all development of the lower organs.

But at the same time I have been told the difficulties of managing my son's rare condition & that it is so generalised that there is nothing they can really do.

It is beyond devastating, everyday at some point I grieve for my son, so scared about his protein levels, white blood cells & general immunity & the fatal effects of them not being enough. I also constantly worry about how his organs are, whether something is going to go wrong with the kidneys like it did the lungs, or whether the fact there is no clearance through the liver & spleen, if they are healthy & developing ok. Even something as simple as him getting a deep tissue infection again like cellulitus & the dangers of that leading to septicaemia.

ThanQ for reading.

Keira

Keira's journey through selective muteism and autism has affected us all. Keira has been selectively mute since the age of 3, she is now 17. One comment I will remember from a parent at primary school was "If she was my child I would make her speak".
Keira was the youngest of 6 children, all speaking.
If only it was that easy. Keira and I have seen many changes to the title of selective muteism. No-one knew what to do with her, it was relatively unknown 15 years ago. Keira would stop speaking on the way to school at a certain point unless she we were with someone and she would stop from the moment of meeting them onwards. Keira never spoke at school and any encouragement from me usually resulted in a kick from her. Keira never spoke to her siblings either who attended the same school. Once Keira didn't speak at home for two days when my daughter had a sleepover. Keira smiled and used facial mannerisms which enabled me to 'read' her mind a little bit. I could read her body language. Keiras failure to speak has meant she has missed out on a lot of support she should have had in life. What do you do without talking? Sign language brings attention as do picture cards and writing in books. I was told Keira was an attention seeker as early as reception, but nothing could have been further from the truth. If I was to have put Keira in the book corner and told her to stay there that just what she would have done. Attention was the last thing she wanted and still is.
Keira now leads an isolated life at home. Cannot use public transport or talk in shops. Keira walks with her head down to avoid any form of eye contact. I feel Keira has been failed by something we just didnt know how to handle, from me, to education, to the mental health sector. to therapists and counsellors. We have been passed from person to person because they didnt know what to do with her. People see Keira and say 'I'll get her talking' but a year later Keira will still be silent. Interacting but silently. Animals, photography and art are her passions, non-threatening and isolating. What is Keira's future in her non-communicating world? I am so pleased this condition is becoming more researched, I hope people will read it and think 'that was Keira'.

Jojo's Story

I wanted to tell you about my beautiful son Joey who is 9 years old . Three years ago to the month he was diagnosed with Duchenne Muscular Dystrophy . DMD is a progressive muscle disorder that weakens the muscles which includes the heart and lungs . This form of Muscular Dystrophy only affects boys and in most cases these boys dont live past their early 20's . Since Joey's diagnosis three years ago , he is already unable to walk and do things for him self . He is a loving and sweet boy who is loved by all he meets . Through all of this I have realized that so few people even know what this disease is and that it shortens the lifes of these boys tremendously . I am aware that there are many worthy causes out there and all should be represented but why isn't MD more known , what has Jerry Lewis been fighting for all these years ? Well now I'm fighting for my son and all the other boys and their families .
I also wanted to stress my concern for all the families including mine who can't get any Government assistance for our children because " we make too much money " . We are an average income family struggeling to survive and come up with money for everyday needs for both our children let alone find money to modify our home for our sons needs . What is this world coming to when a hard working american family can't even get their state to help a disabled child ? Something is wrong ! We are getting punished for having descent income , you must be destitute to qualify for help . I just dont understand that . Maybe someone could explain it to me cause I am exausted trying to figure out what to do .

My brother








Hello, we are an Albanian family who lives in Italy. I want to tell you about my brother who is now 24 years, and as a result of an accident in the pool has remained tetraplelgico. He underwent surgery because the vertebrae are broken. It has virtually the injured spinal cord and I wanted to ask you to please you can help us to find some cure for him as it is not independent. At least try something that might give their hands, since we now do not use them. In Italy there is no solution here, and unfortunately no one helps us economically or medically. Thank you in advance and look forward to hearing from you.

CCHS

Cassidy is a amazing 2 1/2 year old little girl with congential central hypoventilation syndrome also known as undine curse. I would like to hold out hope that some day we will find a cure but all of research indicates that our "orpahan" disease is so rare no one will put any money into its research. So for know we avoid water and try to explain to my trach kid why she cant go swimming like all the other kids

clift lip and palate

I need you job so that I can take good care about my little boy who born with clift lip and palate. I need a job but I have only grade 10 and I'm 22years and my poor son is turnining 1year next month . Please I'll be happy if you help m with work.

Tetrology of Fallot

Our daughter was born amost 6 weeks early with Tetrology of Fallot & 22q Deletion.
She was in the hospital for the first 3.5 months of her life. During that time she has two open heart surgeries (both emergency shunts), one surgery to place a nissen and G-tube.
After her first shunt was placed she ended up with a blood infection which put her back into the ICU on high alert.
After her second shunt surgery she ended up with an infection at the incision site which landed her back in the OR (twice!) to flush out the wound.
She is unable to swallow and has major reflux, so the nissen and g-tube were an absolute necessity. At almost 6 months of age there is no knowledge of when she will be able to swallow and eat food via her mouth.
We have had a long road since she was born. We have been denied for everything we have applied for 1-2 times and have sent in appeals for each application. On a good note, we did finally receive an acceptance letter, but have been told that we are missing information so our request can not be processed yet. Soon - hopefully.
We have help from the "Grow we me program" at school so that is another positive.
We are slowly putting weight on her and are awaiting the day the Dr's tell us she is ready to go back into the OR to fix the rest of her heart. Hopefully this time we are out of the hospital quickly.
We know we have a long road ahead of us, and hope that we are somewhat prepared for it,

No Edcation for You

My son is 13 now it has been hard. He has visual impairment dyslexia and other delays. He is a miracle born 1 pound at 5 moths.
He is not able to participate in sports fails in school because they refuse to help him.I have contacted legal aid advocacy agencies here people only help certian people.We are not those people we ae natve and do not fit in. I to am disable.
This year we met an Ot that is helping us and a speech therapist that have found equipment to help him i canno afford it. Last school year he was denied title one turtoring,we were not invited to any school events so he was switched to a new school. It is better. He still cannot kep up. In the past he has been beaten by teachers teased by children he still laughs hugs and suceeds in every way at home.
He is a good friend helpful and I need help getting what he need as recommended by his Ot to get him ready for high school in afew years.
They are not goig o help us they made that plain.

Olothando: Helping to educate a disabled little boy.

Dear Sir/Madam,
Olothando (6 yrs old) was born with a rare condition called arthrogryposis, and this has left him physically disabled. He uses a wheelchair to move around at Oakhill school in Knysna, RSA or otherwise drags his body around. His prior experience of schooling has been limited. He also suffered a slight stroke at 2 years of age.

The situation is that the school views him as one of their special children who without financial assistance will be unable to receive appropriate intervention and be at risk for underachieving.

We are therefore seeking assistance for the family. He comes from a very supportive family. His mother is the sole provider for her children. Olo will also need the help of a Speech therapist, an Occupational Teacher and a Dedicated facilatator for the first few years of school.

Please advise whether I can send much more detailed information and documentation. Thank you kindly!

Sick of Struggling

The story of my family's day to day life is compilcated. Only some one with a disabled person in their home could come close to understanding our issues and needs. I am a married, mom of one. My husband is the only fully- abled person in our home. I was diagnosed with epilespy in my teens. As a result, I don't drive and am looking for work at home. Not an easy task in North Dakota.
I was removed from SSI, because my husband makes too much money. In real life after expenses, we just make ends meet. To top that, our 10 year old son has ADHD and bipolar. He attends a public school with meds and an IEP. He also needs regular Dr visits and counciling sessions. I did try to apply for Disabilty for him, but was rejected due to lack of severety. I am debating whether or not I should apply again and appeal for him with a lawyer, if rejected.
My dream is very boring. In fact, it's not much of a dream at all. I would just like get some help with our credit card and medical debts. That would allow some breathing room in our tight budget while I job hunt. Some thing that we as a family have always dreamed of is a trip to NYC and Washington DC. That's something I know my son would LOVE that we've been putting off due to money. My husband has been working 50-60 hours each week to provide for us. So it's well overdue.
I'm finding that writing this is difficult to do. I am a woman with a lot of pride. It's that pride that kept me job hunting for 2 years without asking for help until now. Any thing you can do in way of advice or grants would be wonderful.

Hope for the hopeless

I am glad to introduce Jivadhara Institute of Neuro development and Research, we are located at Kochi, Kerala, India. We follow “JIVADHARA” This comes under Complementary and Alternative Medicine. Its a new unique combination of Acupuncture and Electrohomeopathy. We have impressive results in treatment for Cerebral Palsy, Mental Retardation, Autism Learning disorders, Down’s Syndrome, Muscular Dystrophy, specially in kids. The most attractive feature is that, JIVADHARA has no Side effects. please visit www.jivadhara.com. please do contact us for any further details.
wijopeter. (Admin manager)
Jivadhara institute.

Wesley & Moebius Syndrome

My second pregnancy was as uncomplicated as my first. Hence, after the scan in my third semester, I looked forward to the birth. I was rushed into theater after three failed epidurals and Wesley was delivered by Emergency Caesarean.

While battling to open my eyes in the recovery room, trying not to concentrate on the pain after my caesarian, I heard one of the nurses passing a comment: "shame, if only she knew". The doctors told me: "he might not be able to see, hear, talk, walk, in fact he won't be educable. He hardly has a brain. He will need constant caring and would need to be institutionalized".

Still in shock, I was told "Your baby is very sick and might only live for 2 weeks, but if by a miracle he survives, he might not grow older than 18 years". The diagnosis was Hydrocephalus, Moebius Syndrome and Poland Syndrome. I recall how devastated and helpless I felt.

For 3 days I shut myself off from the world, refusing to see him or hold him. Instead, I prayed, cried and perfected my negotiation skills with God, whom I couldn't allow to get off lightly. After all, I told Him: if you entrust me with this special child, give me the courage to cope, the love to hold him and protect him and the determination to never give up on him, and a three-some pact was sealed that day. Wesley survived against all odds, and up to the age of 13 years managed a hassle-free VP Shunt which had been inserted when he was 4 days old. I recall a further conversation with God when I thanked him for giving Wesley to us but telling him how I longed to hear him say "mommy".

His development was noticeably slower than other babies but a friend who cared for him since the age of 9 months would give me a rundown of his daily activities when I fetched him after work. She recalls how he would turn his head as cars passed the house, attracted by the sounds he heard. When he was just a few months old my sister sent him a Fischer Price CD player, with nursery rhymes. His favourite was Twinkle Twinkle little Star, yet, when we changed the CD to Baa Baa Black Sheep, Wesley objected with what could only be described as an early toi-toi (an African way of objecting to unhappiness by means of chanting or dancing). He displayed a strong rhythmic sense and he showed his appreciation for music by thumping his feet to the beat especially when we turned the volume down. In true Wesley fashion, at the age of three, 23 July 1999, bypassing the crawling stage, Wesley could walk, talk, and pretty much caught up with his peers reaching each and every Moebius milestone.

What struck me was that Wesley's development was never recognized or acknowledged by doctors purely because he bypassed the expected "due date" which resulted in his achievements becoming a reason for the family to celebrate and acknowledge his blessings. With my wonderful support system at home, we crossed each and every hurdle with flying colours while Wesley enjoyed the words of encouragement and praise, and offcourse the fuss.

With many instances of school bullying and beating, Wesley remained strong willed, positive and kind hearted. Until about 3 months before he died, he never raised his voice at me. Like always, he greeted me at the door, asked about my day and would follow me into the room. There I would hear about his day and what he did, whom he saw and which girl attracted his attention that day. We would usually talk about the "girl" situation, reassuring me that he wouldn't step out of line, that he believes a girl should be treated with respect but also lovingly reminding me that he had heard that "lecture" far too many times. He would ask about dinner and follow me into the kitchen as if he was going to help, only to make sure what's for dinner and off he would go to his room. That night though, was different, he returned from his room minutes later, boldly shouted: "why me, why not Melissa or Kristen, why did you have to do it to me". I was shocked, hurt and bewildered. After what seamed like hours, all I could utter was "Wes, I don't know. I'm sorry; I think you should ask God." Some time had passed when he eventually came back into the kitchen saying: "Mommy Kay, I'm sorry. I'm ok, I'm fine with who I am - besides, soon I will be able to smile just like you".

Soon forgotten, Wesley was his old self - keeping the girls in line and as so often word of advice to his elder sister, reprimanding her on her dress code with a "I see too much, or please wear something else before you step out of the house or a firm warning to stay clear of drugs and alcohol and a subtle plea not to venture into easy relationships" - the advice Melissa now tells me she misses dearly and valued so much about her brother.

Highlights around Moebius Syndrome are that of how we make the person living with this syndrome / sequence feel.
The facial expression of another person is often the basis on which we form significant impressions such as friendliness, trustworthiness, and status.
What we often overlook is that while someone living with Moebius Syndrome has no facial expression, he / she can easily interpret the shock on another person's face when coming in contact with them.
With obvious facial differences, speech problems, eating difficulties, children with Moebius Syndrome are often victims at school where they are teased and bullied.


They have difficulty in participating in ordinary child-like activities such as blowing out their birthday candles, inflating balloons or even blowing bubbles. Children might become withdrawn from society as they feel less wanted or welcome amongst their peers and are forced to deal with their emotions of anger, rejection, depression and loneliness to name a few.

On the brink of adulthood, Wesley showed signs of fear, scared that he would not fit in with friends and family and judging from our conversations about girls, his greatest concern was if he would be able to kiss or whether she would feel the "butterflies", but with a clear warning from me to be careful of those butterflies which always sent him off with a roar of laughter.

When Nelson Mandela picked up and read the letter wherein Thando’s mother appealed for his help, lives were bound to change. Through him, the improbable became possible. How thankful we should be that this humble, kind spirited man walked out of prison with no hatred or vengeance in his heart. Lives changed, and so did mine. Through an unselfish act of Nelson Mandela, children like Thando, Wesley, Kelobogile, Divan and many others have received quality of life!

Thando was also born with a rare genetic disorder affecting the facial nerves. Thando couldn’t smile!

Without hesitation, he approached a very prominent businessman, Bertie Lubner who in return consulted with his son Marc who then contacted Prof George Psaras. A Canadian, Dr Ronald Zucker, flew to South Africa to meet with Marc and George to assess Thando as a suitable candidate for the procedure he had performed on children with Moebius Syndrome. In 1999, with Nelson Mandela as a Founder Patron, The Smile Foundation was born.

Thus far the Smile Foundation have hosted many Smile weeks and during such a week up to 40 children receive free medical procedures which ranges between cleft-lip & palate, cleft-lip, facial burns, facial paralysis or Moebius Syndrome (also referred to as Moebius Sequence)

On the eve of the Smile operation, 24th May 2007, Wesley was calm, yet excited as he had made a date with a special girl at school. I am told that he promised her 'a night out' but insisted that I drive them because 'my mother would stress too much'.

With the operation being successful, the wonderful caring he received while in hospital and the assurance that he would be back for the second phase, Wesley and I left for home, his dream like Martin Luther King's had come true!

Friday, 20 July 2007 was like many other evenings for him. He had his favorite audience listening to his selection of music, hosting his private talk shows - including weather forecasts and the latest reviews on politics etc, when suddenly he rushed to urge me to phone Prof Psaras to tell him that he felt a twitch, that when he wakes up tomorrow morning he was sure that he would smile for me. His sisters hugged and kissed him, sharing his excitement. I told him I couldn't do it, that it was too late and that I was not sure where Prof Psaras was at the time. I assured him that I would inform Prof Psaras via email Monday morning and that he should be patient till then.

When I found him sitting on the bed early hours of Saturday morning, I immediately told him that we should go to hospital. (about 50km away) Wesley told me that God was taking his pain away and that I shouldn't panic but nothing seemed to matter to me more than to get him to hospital. I offered him mild pain medication and soon after he dozed off to sleep, he alerted me again at 9h00 that morning.

When the Neurosurgeon eventually got to see Wesley, he was talkative, cheerful and responsive. A full blood count was taken, he was going to be sent for a scan and if there was reason for concern, they would hospitalize him for observation. Being admitted to the trauma unit, I was not allowed to stay with him and stepped out for 20 minutes for them to complete the tests.

Upon my return to the ward, I found him with his head turned, not responding to my voice and I could clearly see that his lips had turned blue. The nursing sister who had asked me to leave, assuring me that she would notice when something went wrong, was nowhere near him, but came running when she heard me crying frantically for someone to help.

After an emergency operation to release the fluid from the brain that same day, and the subsequent observation thereafter, we were told by the Neurosurgeon that he had reached his mortality, that Wesley would not ever be the same again. Wesley was declared brain dead and that day, 22 July 2007, we had to say our goodbyes.

I don't know if it will get better, if this deep sense of loss ever fades, but I am glad and grateful that we had Wesley. Clear to me now, is that if I could do it over again, and my journey includes Wesley with Moebius, I would want to do it again.

My Moebius journey has not ended as I intend to share and help other parents in South Africa who might be battling with the challenges they are facing.

After his smile operation, Wesley shared another dream with me - to start an organization to help others like him. The initiative is an attempt to provide non-financial support to children born with Moebius Syndrome and their parents. The support hinges around information-sharing, such as coping skills for feeding, which often is the most concerning factor at birth. Furthermore, the need to identify and document children with Moebius Syndrome will form an integral part.

The battle within them about being loved, belonging, and feeling wanted is only a few of the trials they face and it remains our duty as parents to protect and guide them. More importantly, we have to positively expose them to the community so that the outward manifestations of this syndrome can be positively embraced.

My Dakota

Dakota was born february 5th 2011. He was 8lbs 2 ounces. His head was elongated and larger then the rest of his body. The first years of his life he underwent a sensory problem. Certin textures of foods he would not eat, he couldnt chew meat properly. He would end up choking on it. He wouldn't touch certin textures and he would scream as if being beaten when his feet touched the floor. Until the age of almost 2/12 to three he never walked on his own. I had to carry him everywhere. Plus he did not get out of diapers/pull ups till he was six almost seven.
We moved then to Arkansas where a Dr gave us ideas of what might be his diagnosis. He mentioned asbergers autism. While in Arkansas he went to a special school for children with disabilities. The school was unable to fully assist him.

We then moved back to Florida where on top of his asbergers autism they added Adhd and ODD. My son has been violent to his sibling's choking them, hitting them. He is destructive to object's we can not keep things unbroken around him. He will break everything he plays with. And when asking him why he claims "i dont know". He is sexually inappropriate to other children including his sibling's. I can not trust him in a bedroom alone with his siblings or other children, and yet due to limited finances I am unable to get a larger house so that I can place him and his siblings in diffrent rooms.

I Am at my wits end. Many schools just can not deal with him and yet I am required by law to send him to school. I once had him at a school for children with disabilities. Though due to his behavior there he was suspended alot. And eventually locked within a childs medical ward for a week due to pulling a knife and threatening me and his siblings.

I no longer have a vechicle with which to transport him to and from school. the Constant wear and tear just tore down my care.

I can not get a job to help my family with finances as if i go to work I am called within hours to pick up my son from school and bring him home due to his behavior at school even on medication.

I do not want to lock him within an institution and yet i am swiftly running out of choices to help him Finacially, emotionally, and education wise.
I just do not know what to do..There has got to be more help out there for families with these kinds of children then is openly listed or spoken about.

It just seems so sad these children fall through the cracks. It isn't there fault they are like this. All they need is help and isnt it our job to help them?

Giving Alex a voice for the first time

Hello
My name is Erica Judd, and I live in Louisville, Ky. I needed to talk to someone about getting an IPAD donated for my disabled son. I guess I should start with some history.

My son is 4 years old, he will be 5 in Oct. He was born with a rare genetic condition called "L1 Syndrome." This caused him to have Hydrocephalus (water on the brain), epilepsy, chronic lung, cranial stenosis, and other issues. He has had 4 brain surgeries and a 3 part stomach surgery. He eats through a feeding tube, and has never been able to truly speak (shy small words like mama, dada, etc). None the less though, we are very blessed. We were told that he would never breath, eat, speak, or learn. That if he did make it, he would be a vegetable. Our boy is going strong, almost crawling, working on using a walker, and, thanks to YOU GUYS (THANKS!!!!), working on finally having a voice.

I downloaded an App for my IPhone called "Victor's Voice." This is a program made by a man who's son couldn't speak. I downloaded this, with the hope that maybe in a few months to a year, Alex would be able to have some type of voice...even if it was just Yes or No. Remember, Alex is 4 years old, and hasn't ever been able to tell us anything he wanted, didn't want, etc. Little did I know that in only 48 hours, he would be "speaking" to us! Through the App, he is able to tell us yes and no, that he wants his dog, a drink, his ball, or his brother. This is all just within 2 days!!! Who knows what he will be doing next week, or next month!!!

The problem is that Alex has Adducted thumbs (He cannot extend his thumbs out) and he cannot control his movements well. He has a habit of hitting the phone hard, changing the screen, or hitting the top/side of the button when he is trying to hit the button next to it. For him to really be able to get the full potential out of this App, he would need an IPAD.

This is where you guys come in. Thanks to apple and the man that made this App, my son already has more of a voice in 2 days then he has had in 4 years. I am hoping that with a little more of your help, my son can truly have a REAL voice, for the first time in his short life. I am hoping that you have some sort of grant program set aside for people with special circumstances like little Alex. Can you please let me know if this is available, and what I can do to apply for it? If I have sent this email to the wrong person, could you forward it to whoever it should have went to and PLEASE let me know.

I have worked very hard to get my son to the point he is at, and I love him more then anything. Please let me know if your company can be of any assistance.

I am enclosing a link to 2 YOUTUBE videos of alex. One explains about him, and one I took tonight of him using the app.


About my baby ------------> http://www.youtube.com/user/JuggaletteENJ#p/a/u/0/94guX4bgbEI

Using the App---------------> http://www.youtube.com/user/JuggaletteENJ#p/u/6/7poPwUR-VsA

Thanks again

Erica Judd

My Family's Exhaustive Journey

My husband left us when my older two children were 9 and 3 years of age. He was foreign and left within a week of getting his visa into the UK - I was heartbroken and sank into a deep depression. I kept going because of my children and had/have no-one else (family etc) to turn to. I decided to exchange houses to another county which I did as me and the kids needed to get away from my ex husband as he was tormenting us and being very controlling. Once we moved house I discovered I was 12 weeks pregnant with my ex - it was a huge surprise and shock. When I told my ex he tried to force me into having an abortion but I refused, I couldn't live with myself if I did that even though it is a person's choice if that is what they decide.
My baby boy was born in 2003 - he was a lovely baby, so perfect, a head of hair, big brown eyes, a lovely smile. He was a sweet baby and quite well behaved. However from the age of 15 months or so he began to have terrible tantrums and if strangers talked to him he would scream in terror. He would spend hours spinning things and would not look anyone in the eyes. His sleeping habits became erratic also. When the health visitor could not understand what to do she referred us to a special clinic where he was diagnosed aged 2 with Autism.
After the initial shock it was a relief in a way as I knew something was very wrong.
He is 8 now and it doesn't get any easier, in fact I have physical disabilities of my own and am finding it harder and harder to cope. The services around here are not great, I have no overnight respite and very little help with him getting taken out on outings etc. Sometimes I only get a couple of hours sleep and he floods and bathroom and kitchen constantly, hits, pinches and has terrible tantrums which are hard to cope with. He is a fussy eater and will only drink fizzy drinks. Even cutting his fingernails/toenails is a chore and I dont see any of these things getting easier as he gets bigger and older.
I would like better services provided and single parents (especially with disabilities themselves) should be given priority, it would be nice to also be offered more equipment i.e. communication etc. but 'funding' always seems to be a problem. For example an Ipod tablet or something similar would be so handy for us as we would teach him to touch the screen and would be able to put so many different pictures on there rather than carrying around lots of little PECS cards.
Some days I feel I cannot cope much longer but know I have no choice as either I have to carry on or goodness knows what will happen to my family.

Distressed and Depressed

I am writing seeking relief for a Philadelphia, PA area family of 6 with 3 severely disabled children. The husband works as a minimum wage laborer. The wife is required to be in the home to care for 2 preschool age severely disabled children. Their severely disabled and retarded daughter is of school age and attends school daily. She is not ambulatory. Her manual wheelchair is aged and tattered. They are required to physically carry her for moves in and about the home. This can only be accomplished during the hours in which the husband is home from his job. Due to their extremely limited resources they cannot afford the stair lifts, motorized chairs, badly needed home repairs, highly nutritional food items for all, and appropriate and comfortable clothing. I am seeking their relief via reduced costs or free supplies and services to help them again establish and maintain a reasonable quality of life.

Any help or referrals would be greatly appreciated.

Representing this Distressed and Depressed family,

Tony

Charlie super star

hi my name is Lynsey i am charlie mum, Charlie has Leigh disease and is 4 Years old. He fell poorly at around 10 months he can not sit, stand, walk of talk with out aids. He is tough a very happy and very intelligent little smily boy, who is loved by all who knows him.

My problem is his OT recently asked me how i was going to cope with getting him up and down stairs? as he is getting very big now and at the moment i am carrying him and bathing him by leaning of the bath. She suggested i should go for a DFG grant to provide charlie with a down stairs bedroom and bathroom an extension! but when the appropriate people came out from my local council they totally disregarded this and said no!! i would be provided with a through floor lift in my kitchen and a walk in shower in the bathroom. I had may concerns with this as the only place the lift is suitable to go in the kitchen are i would have to get rid of most of my cupboard space and be left with a sink unit and the two cupboards underneath for storage with no other place to locate more, also charlie suffers from very very bad muscle cramps and spasams and a bath is the only thing that relaxes him any way to cut a very long story short after expressing may concerns i feel they just dont want to listen to me and there Quote was that they are only here to deal with socail need and not a medical need!!! so my current sitiation now is i am still bathing and carrying a huge 4 year old up and down stairs with no sign of any help. i am currenyl trying to raise funds to build the extension myself as i have had alot of support from my local community and local business and builders!! a slow process but hopefully we will get there ANY advice would be a massive help!!!!!

autism-selective mutism

I have a 16 year old son diagonised with autism, for the past year his condition has deteriorated drastically and he has been through all the therepists in the area(north east england) all are puzzelled with his condition.

His current condition is that as soon as he steps outdoors he shuts his eyes and puts his head down in the most awkward position that when at school the teacher is worried that if this continues he could have future problems with his posture. At home he comes alive,but doesnt talk much, will only with alot of prompting. He has his head up and eats, but wont touch any or eat out of the house. I dont know whats going on his mind and will try anything to get what might have triggered this or if someone could tell me if this happens to autistic childen or if it a conbination of autisim and mental illness. please help

shot victom

I had got shot about two years five months ago I was at the wrong place at the wrong time and at this moment I am not getting any help or any sapplies that I need I am getting all of my sapplies from a friend of mine but Idont know hoe much longer she is going to be giving me sapplies for.Anyways Im not going to any theraphy anymore and I dont know why anyone has contacted me all I want is to walk again so I can get a job and go to college to be a nurse even though I know I steel can do it in a chair I just dont feel like myself anymore all I want to do is walk again so if anyone can help me I will be really thankfull I am begging please help me..............


Vanessa

Gods Lil' Angels DX: Alobar Holoprosencephally

My daughter "Kiley Aebischer" was born on 8/27/2009 at OU Medical Center. The doctors told me should would live ten days how devistating. I cried not for me but for her how do I look at her and tell her such a horriable thing when she can't even understand. That day I told her we are going to be just fine regardless what the doctor stated. You are my little trooper and we will go through this together with positive thinking. I will give you a 100% becuase u deserve it all! OU sent her home on hospice and morphine how terriable didn't even give her a chance. I had to begg for a neurologist to consult he stated they did an MRI was not true did a EEG told me there was no hope bt comfort care. They wouldn't schedule her a follow up. Went home on hospice care with "MORPHINE" I asked if her head would fill up with fluid they stated NO not true her head started feeling up with fluid I had to fight to get her back in for SURGERY- This could have been taken on early so she didint half to go throught her head being 22inches. She isn now 1 year and 7 months. She thrives to be here. She fights every day for her life and to be here but yet the system will not provide her with things she needs. How awfull when someone fights so hard!!!
Can u help??????

My website: http://angels-with-holoprosencephaly.webs.com

Gods Lil' Angels ♥God sent me an Angel, she had a broken wing. I bent my head wondering... How could God do such a thing? When I asked the father why he sent this baby girl to me, the awnser forthcoming, he said listen, "listen and you will see" My children are all precious, and none is like the rest. Each one to me is speical, and the least is as the best. I send each one from heaven and I place it in the care of those who know my mercy, those with love to spare, sometimes I take them back again. Sometimes I let them stay. No matter what might happen, I am never far away. So if you have an Angel and you don't know what to do remember, I am with you , love is all I ask for.

my daughter

sir i am from Pakistan and have a daughter of 6 and half years old.she has no any sense no talking nor eating something .all the time rest on bed and we feed her with bottle she eat mean drink very difficulty with hold the nose to avoid breath during this feed pour in his mouth .we have checked by doctors they says that she has only 15 % of brain working.she has no sense once she fell down at iron box and she was laughing .every time mostly she is laughing ,we r in trouble for her traveling .for her toilet any way your charity can help me in her checking from any doctor .please help me i am a poor man and want to help for my daughter thanks u sir

Jack and Jill Childrens Foundation

Founded in 97 has brought early intervention home nursing care to over 1300 children all over Republic of Ireland in that time.Care provided from birth until 4yrs of age.Should be replicated in UK.See our website www.jackandjill.ie

Brave Jack

In 2003 Jack choked on a piece of fruit whilst attending a nursery in Germany. He was 14 months old at the time and is now 9 years of age. He suffered severe brain damage, lost his sight, developed epilepsy, will never walk or talk, sit up or roll himself and obviously is doubly incontinent.
Jack's father and I, along with Jack's toddler brother have been living in Cardiff for 7 years. It would take me weeks to put everything that has happened to us over the years in trying to establish equipment, social care, support from community nursing and education for Jack, as every parent who cares for a severely disabled child or adult knows, I have barely enough time to have a shower, let alone sit down and take the time to write (yet another) explaination of our needs.
The reason I am taking the time right now, is because I watched your television documentary last night and saw myself in you in so many ways Henrietta, In the past I have avoided watching any shows relating to disabled children perhaps because in my mind I wasn't emotionally strong enough to hear about anyone else's plight. Like you, I have been worn down bit by bit. I started out as a very kind happy person when we left the hospital ward ( 3 months of intensive care and 3 months of time on the children's ward). I'm afraid I am now only kind at heart, non trusting and hugely frustrated. Every ounce of energy goes to my brave Jack and his little brother. I have realised over the years that nobody really cares about how badly life treats you, if they don't have the money in the pot then the conversation ends abruptly and we are left to move onto the next person (who, in my experience most times only has an answering machine that never gets replied to). This frustration actually sent me close to the edge with regards to Jack's educational statement. I was so frustrated with the way things were moving that I landed on the doorstep of people in charge with my lawyer in tow. This moved quickly after that, but how many people have that option and why does it have to come to that? This was only one incident, and Henrietta, you, more than most understand that absolutely everything else is the same fight.
You are an inspiration to me, and I will be closely following your cause. You said in your documentary that you learned to challenge everything and not to be afraid, I have learned this as well over the years and hope that the appropriate changes are made in the government soon to help us all. Thank you for your story. K

The Echoes Foundation

The Echoes Foundation 2010

My name is Claire Stockton and I am the founder/trustee of The Echoes Foundation and also director of Echoes Retail Outlets. I first had the idea that I wanted to set up or open a centre for disabled children and their families in March 2008 at that time my son Finley who has an undiagnosed genetic brain condition was just 2 years old. Finley doesn’t walk, talk, crawl, eat properly, he has severe physical and learning disabilities although he is very happy and a delight to everyone who knows him. I also have an 11 year old daughter who has just started high school called Lauryn and my extremely supportive husband Carl.



The Echoes Foundation was set up because I saw and experienced the need for additional services, when I found out that Finley was disabled I firstly wanted to speak to other parents who knew what I was going through and secondly I wanted to know what was wrong with my son. I also wanted Finley to have hydrotherapy and music therapy amongst other therapies and found it really hard to access these services, also I was unaware of what was really out there for my son and my family, for example benefits etc. So I made the decision to start fund-raising and planned that one day I would eventually raise enough money to open a dedicated therapy centre for all children in Hull and the surrounding area with special or additional needs, I never imagined that by the 14th August 2009 we would be planning our open day and be in a position to offer families a sensory room, alternative therapy room, parental support room and parent resource room and be supporting 84 families! This number is now over 150 and continues to grow. So how did it all happen?

Up until beginning this incredible journey I had no experience what so ever of businesses and charities it was a completely different ball game to my usual hospital theatre job as an Operating Dept Practitioner. I first came up with the vision of what I wanted and planned for a time frame of about 10 years… I then came up with the name Echoes because I really liked the sound of the name it was also short and I would be able to put a word to each letter and that’s how I came up with Every Child Has Opportunities, Equality and Support. Echoes is a voice and means, an echo (plural echoes) is a reflection of sound, arriving at the listener some time after the direct sound. ... so I came up with our mission statement, Special needs..we have a voice too. The logo came next and I sat down with a friend and made some doodles on the computer I told him it had to show love, be bright and show our name and that’s how we came up with the logo, to me it looks like a parent/carer and a child facing each other. I knew these where the first things I would need to do as I wanted to print stationary and business cards etc and it would look much more professional. Soon after this and when the organization began to grow I copy wrote and trademarked the name and logo to me personally so I actually own it and do not have the worry of it ever being used by anyone else.

Ian Holmes of Pickering and Newington Development Association soon heard of what I was trying to do, he manages the Gypsyville library and the offices above and asked to have a meeting with me. At this point Alan Johnson Mp had come on board as our patron and the directors consisted of me, my mum, Phillip Drew (General Surgeon), this would have been May 2008. I went along with my business plan which was basically like this and sat around a table discussing my aspirations for the future, what my plans where and how I thought these could be achieved. After the meeting Ian showed me the empty rooms above the library and basically offered me a room, I was really shocked to be being offered a room I couldn’t believe someone was taking me seriously! So I began trying to raise the funds for the rent£2000 per year, and furniture etc for the room. I rang around some contacts and managed to get £1000 from Transwaste, furniture donated from Shakers in Hessle, insurance donated from kennets insurance, computer donated from Gemini Trailers Ltd flooring donated from Floorways in Hessle and blinds donated from All Blinds, this took me a few days and I moved into the Parental Support room/office on the 1st June 2008.



As soon as I got my first room I began planning how to raise money and also started to investigate where I could get help and I came across Business Link. Business link helped me source funding for my business plan and quality control procedures and put the work out to tender. I chose Genesis Training and spent a lot of time with Anne Hames working on my business plan and Quality Procedures (Policies and Procedures) I also got funding for a mentor who also helped me plan the future and gave me a lot of invaluable advice as regards funding and grants.

I also began advertising (for free of course) using the local media, I did radio interviews, press releases and even did some television interviews for Calendar and Look North, and did stands at various events and really began to build the brand, all the time I still did my other job working as an Operating Department Practitioner at the time in Leeds, I also worked for a agency on the labour ward at Hull Royal Infirmary which help fund The Echoes Foundation I donated this directly to The Echoes Foundation bank account which was about £100 per week.

I was advised to start off by being a Social Enterprise and Charitable Company by Limited Guarantee. I also appointed new directors which all had different skills that I knew would benefit Echoes and help us to grow. I appointed a social worker/school governor, finance advisor, solicitor, fireman and another parent of a disabled child. Our patrons are Alan Johnson MP and celebrity chef Nigel Brown.

I promoted my parental support service by writing to children’s centres, doctor’s surgeries, the Pct, hospital wards, nurseries and special/main stream schools. I also did interviews with magazines, everything I possibly could to get the brand out there. I was told very early on to treat it as a business so that’s what I did. We launched our website very early on and I even had this donated through the brother in law of one of The Echoes foundation trustees www.echoesfoundation.co.uk

Through the many fundraising events I did, donations, and a few grants plus a large one off injection of cash from the Pct £20,000 I was able to open more rooms and I eventually had nearly the whole of the top floor and we opened on the 27th August 2009 at that point having 84 families!



In December 2008 I had the idea of trying to raise some regular revenue so that I didn’t have to rely on constant fundraising and donations (which is hard work). I decided to open a charity shop, again I didn’t have a clue where to start as I had never been involved in retail or leasing property… I saw a potential opportunity on Hessle Road not far from the centre and went to have a look, it was a good size and I decided to negotiate a reasonable rent. The shop opened its doors 6 weeks later and the profit after the first year was £14000. The shop is run completely separate from The Echoes Foundation and is registered under the company Echoes Retail Outlets which every year donates all of its profit to the charity and this is also gift aided so we make another 17.5p in the pound too.

After we had raised £5000 which happened very quickly I began to think about registering as a charity, this was a very long drawn out process and eventually I sought some professional help and asked Rollits solicitors to do it all for me, which they did and we became a registered charity in January 2010.

In 2009 I was nominated for Social Entrepreneur for Yorkshire and the Humber 2009 which I won and couldn’t quite believe it in fact I was lost for words which was a first for me when it comes to talking about The Echoes Foundation.

We have recently opened our second shop on Newland Avenue and have just set up a P.A.T. Testing Business too all with the aim of becoming fully self sustainable. We have spent some of the profit from the Hessle Road shop £7000 setting up the Newland Ave one and we have now been open 2 weeks and have turned over more than £2000, We have a steady flow of P.A.T. testing jobs coming in and are about to sign a contract with the Mandeville Special school in London and we hope to get some more work in the London area too, as we do not have hardly any running costs for the P.A.T. testing business so long as we clear the wages and diesel for the day the rest is profit which at the end of the year along with the profit from the shops will go directly to The Echoes Foundation. We charged the school £400 per day and this is still way below the quotes they where being given in London and that gave us a profit of £250. If the shops keep doing well and also the P.A.T. testing business we hope to have a profit of £25,000 at the end of this financial year. The following year we hope this will be in the region of £33,000 as we will not have the setting up costs of Newland although we may be looking to open another shop in around 12 to 18 months.

The Echoes Foundation employs three staff, centre Co Coordinator, Finance/payroll officer and admin assistant (NVQ 2 student). Echoes Retail Outlets employs 2 members of staff to run both charity shops and one person to do the Pat Testing. I still work as an Operating Dept Practitioner, now at a local hospital rather than in Leeds. I felt I needed to be closer to home especially with Finley and his needs and also with the needs and my commitment to The Echoes Foundation. I work two days a week at the hospital plus one Saturday a month for the extra pennies, and three days a week at the centre. I also help out at the shop on a Saturday sometimes when they are short on volunteers or to cover sickness which I enjoy as I am very much a people person. I want to also keep an eye on how the shops are doing and also feel it is important for them to know I am supportive of them.

We also sell merchandise, t shirts, pens, hoodies, key rings etc as another funding stream. We are about to launch our Celebrity Chef Calendar which was the idea of one of our families. Alison Thompson volunteers for us every week and had the idea of getting some of the celebrity chefs to donate recipes, the calendar is being launch on the 23rd September. Twelve famous celebrity chefs have got behind the 2011 Charity Calendar, contributing a different recipe for each month. In order of appearance Gordon Ramsey, Gary Rhodes, Raymond Blanc, Merrilees Parker, Gino D’Acampo, Silvana Franco, the Hairy Bikers, Jean-Christophe Novelli, James Martin, Ainsley Harriott, James McKenzie and Nigel Brown. We have had each month sponsored by a local company so the calendar has cost us nothing, we hope to make the calendar go national and sell at least 3000 copies giving us a profit of £20,000. The story has already hit the headlines in various local newspapers and radio stations.

Since beginning to fund raise for The Echoes Foundation we have raised in access of £200,000 which is fantastic although not enough to have our own building but this will happen one day and I can’t wait….

Most recently we have been in talks with a local special needs school who are currently building a brand new state of the art school and are keen for us to move in with them and share the state of the art facilities, this is currently ongoing but I am very confident that this will happen next year and will just be fantastic for all our families and pave the way to help hundreds more families.

This is my story and my dream.

Thank you

Claire Stockton




Kel is Growing Up

My daughter, Kel, is 34. Since third grade, she struggled with social relationships. She was loud, overwhelming, extremely opinionated even when very young, and despite my efforts, she seemed to abhor basic practices of cleanliness -- like brushing her teeth. Kel was beyond impulsive. The confusing thing was her great skill for manipulating and lying, though her intelligence seemed lacking in other areas. While she had an amazing memory for trivia, she didn't -- and still does not -- seem to comprehend long-term consequences for her behaviors. She is totally lost with math, but loves to read.

When Kel was 10, her father and I divorced. Things got worse, and we spent alot of energy in counseling and testing. The only answer we got -- and I'm still not certain this was correct -- was that she had a "borderline" I.Q. of 80.

Age age 20, she married a man exactly like herself. From the very first, their marriage was a downhill slide and included arrests for minor domestic violence, shoplifting, a shared addiction to texting, video games, and anything electronic. I, and then I and my new husband, encouraged them, counseled them, assisted them financially, and did everything we knew to patiently help them along. It only got worse.

Three children were born into my daughter's marriage within 5 years. My husband and I (who had 5 teenagers at home at the time) took their first 2 children (our granddaughters into our home for 6 months at a time, two years in a row, while the parents were either homeless or in jail. Both little girls were/are extremely bright, but they were also neglected while the parents lived their impulsive lives.

My husband and I spoke with State officials with Child Protective Services and learned that we had no rights to intervene, unless we were willing to go to court to remove parental rights from my daughter and her husband. I had great guilt about never having been able to find a solution for my daughter, or even to know what was causing her inability to function in anything like a "normal" way. I felt I still had an obligation (as well as desire) to maintain my relationship with Kel, and to assist her. We did not take her to court, but continued to "rescue" the family whenever we deemed that the children were especially endangered.

Another child was born, a little boy, shortly after my husband and I had to move to another state for employment.

Within 4 months, my daughter -- now divorced -- realized that, without our constant support, she could not raise her children. They went to live with Kel's cousin, who intended to raise them. In the meantime, Kel became pregnant out of wedlock. We brought her to live with us, as we had been forced to move to another state for a job, and saw her through the pregnancy and subsequent adoption of that child by a wonderful couple.

While living out of state, I found a testing agency that tested Kel and determined she has Asperger's Syndrome. This diagnosis did not even exist until Kel was 18. It was not fully accepted in the medical community for approximately another decade. This may be why no therapist or psychologist could really give us any answers in all those previous years. Kel was 30 years old before she received her diagnosis. My husband still believes that Kel's behavior has been deliberate and can be "fixed" if she will just get her act together.

After the birth of the baby she gave up for adoption, we assisted her in finding a scholarship and grants and she settled into an apartment to go to college. She blew all the grant money on a laptop, a cell phone -- the whole thing began all again. She dropped out of school, couldn't pay rent, and went to live in a homeless shelter once again.

My husband and I decided we were done bailing her out. Her cousin gave up on Kel's youngest daughter when she (Abby) was 6 years of age. Abby had severe behavioral issues related to neglect and has now been diagnosed with Reactive Attachment Disorder. My husband and I immediately agreed to raise Abby. A year later, Kel's oldest daughter (Anna), also diagnosed with RAD, came to live with us permanently. Kel took back custody of her son Kayden, who came to live with her in the homeless shelter when her newest baby was 8 months of age.

Kayden has a serious speech delay and is suffering in school. His special needs are not being met. He is in kindergarten.

I was with Kel when her youngest baby, Kelden, was born. She had promised me (three times) to have her tubes tied, and this time I was there and actually witnessed that event. The baby was born looking perfectly normal. Within a week, his head began to swell and he was diagnosed with hydrocephalus. In his first 13 months of life, he was hospitalized 11 times, twice for surgery (a brain shunt and GERD) and 9 times for respiratory issues. He is a failure-to-thrive baby, weighing only 13 pounds well past his first birthday. He has been granted a permanent disability income under SSI, and this, along with food stamps, is what Kel, her new husband, and her two sons now live on.

Kel is growing up. She takes very diligent care of her tiny boy. Although she still is not great at keeping her children clean, she loves them and we observe that she has overcome much -- though certainly not all -- of her impulsivity. She intends for my husband and me to raise her daughters, but has visitation twice a month and speaks to them on the phone often.

I would like to find ASSISTANCE for Kel -- a woman who I now believe is doing the best she can -- so that she can attain her highest possible functional level. Though she and her husband (who is not motivated to work, and who appears to have a low I.Q.) are now in an apartment, time is running out on the "deal" the State gave them and it could be only a matter of time before they are homeless again.

Are there any programs available for a disabled (but not "on" disability) parent raising a baby who is on disability and a 5-year-old who is significantly communication-delayed?

Also, are there any programs available to assist my husband and me in getting our home made suitable for raising two young girls with Reactive Attachment Disorder? Our life is very challenging as Abby (age 8 now) is often violent (pinching, kicking, slamming doors, throwing things, scratching) and Anna has nowhere to go -- they share a tiny, tiny bedroom. We have one bathroom and these girls need their own space, I believe, in order to get better.

This has been very cathartic; thanks for listening. If there are any programs available for any of the above issues, we'd like to know. Thank you so much.

Family in need

Hi,
I have two cousins in need of a van in order to transport their boys to medical appointments and etc. Gabby & Renata are sisters and they have boys Juan, age 17 and Steve, age 16 with Duchenne Muscular Dystrophy. Which they are in wheelchairs and they depend on others to do everything for them, since they don't have movements in their legs or arms/hands. They were diagnostic at the age of 5yrs old. I hope you could help them! THANK YOU!! GOD BLESS!!

Nadiya Carranza
ncarranza.butler@gmail.com
214-477-8026

Disabled Single mom with special needs toddler, left behind.

I'm a 32yr old mom of 2 in despair, honestly. The entire story is a novel itself, if there's a ray of hope for me I'm gonna write it sometime. I was a writer, poet, artist in many ways, professional tax manager, hair designer, business owner, psychology major and volunteer eg. Sunday school teacher & youth coach. Now I'm a turtle without a shell hiding behind whatever is left of my useless existence. Sure, I'm still a mother, a mother who was told she could no longer pick up her 10month old son in fear of further damaging her deformed & painfully injured spine. I have been all over seeking help so that I can get my emergency surgery but 2.5yrs later I'm still paying for my choice to stop the rolling van that almost hit a lil old lady in her car. Nobody believed it could be as bad as I described, my dad thought I was making some dramatic attempt to get attention though I'd not ever been a dramatic adult. The ER doc accussed me of just wanting narcotics tho i never asked for any, but yet denied me any tests to prove him wrong he cruelly stated "There's nothing wrong with your back, maybe a slight muscle pull, but your gonna be just fi ne. No! I refuse to waist my time, energy & taxpayer $ doing an MRI you are fine and if it hurts so bad take some Tylenol because I think your overreacting!" At that time I'd been in the WORST PAIN OF MY LIFE for about 2.75 days and not slept or stopped crying at all. As I looked into this ignorant, self-righteous & arrogant moron with a Phd's eyes I knew I was alone in this. My left eye was swollen to the size of baseball & only a tiny sliver of world could be seen through it. I found out later that I'd blocked a tear duct from lack of sleep (puffed eyes) and non-stop or almost non-stop tear flow caused particles to block the duct while tears continued to fill my eye & caused it to backup. But I was faking right? A week later I personally got my insurance to approve the full Spinal MRI, the visit to the hospital for that is another long story. That evening my Dr. and I went over the radiology findings report. First thing he said, "OH MY GOD (X5) MALISSA, WHAT DID YOU DO??? THAT WAS ONE WEEK after the accident on 4/28/2008 almost 3 yrs later & still waiting for an Emergency Spinal surgery because until I can find a live-in Nanny & Post surgical care assistant, no one will touch me. The state wont pay for a caregiver until I hand my children over to CPS, WHICH I WILL NOT DO! NOW I NEED TO RE-APPLY FOR SSI, BUT, I'm scared of finding another dead end with no body there to help us and things getting worse for us everyday! m riley

Summer'Sky Jackson

My daughter Summer'Sky been fighting with sickle cell disease since she has been a month old. Her penicilium has been mandatory since than twice a day. Unaware and my emotions could not be prepared for the tylenol codine and Ibubrofen that will be her only source of comfort. So young so beautiful so entrapped with a disease that will stripp her from her childhood slowly as she grow the sickle cell has became worse. She has already been hospitalized several times. She's now on her third blood transfussion. Now in the matter of days about to undergo a serious surgery to remove her spleen. I'm in and out of jobs. Always needing money to help pay the light bill. I have a table with no chairs. A t.v with no stand it is so hard trying to make my daughter life comfortable while she is dealing with this. I been looking for grants that help single parents with children with disabilities for months now. I hope help come soon.

Moriah's Life

Moriah was diagnosied with Leukiema at 6 weeks old. She has been through tramendus treatments. Moriah had a boneborrow transplant at 8 months old and has been cured of the Leukiema but she is now disabled. Moriah will be 9 years old in December but she is in a wheelchair, still in diapers, eats from a gtube that was surgicly put into her stomach, she can't talk and can't walk. Moriah was having up to 200 seizures a day. We as a family are having a hard time keeping up with the bills and mortgage and our house is not equiped for our handicaped daughter. Back around August 15th 2010 I hurt my back and I am now out of work, we are now struggeling to keep above water. My husband and our oldest daughter have been doing there best to take care of Moriah and I. I don't know what we are going to do!
Sincerely,
Theresa

Visually Impaired and new in Alabama

My son is a 4 1/2 yr old child with vison impairment, he is legally blind, (if not completely) and is new to the Alabama area as am I. He just started preschool in Demopolis Alabama and is having difficulties at school. According to the congressman's represenative in the area, it is by LAW, in the state of Alabama that the school and school board is to have a special needs teacher come to the school and work with my son a few times a week as he needs to continue his braille and cane work among other things.
Well according to a member of the education board, it is not a law, and the represenative is "not an educator". But the teacher will be down to work with my son, and teach his teacher and teacher aides braille. But there is a chance that there will be no one to help him as he goes to kindergarden, 1st grade, etc.
Why is there not an Early Intervention/Early Beginings program in Alabama or at least programs here that will help the disabled children when other members of the school and school board seem to "drop the ball"? Every state should have programs to help the nations disabled children be able to be educated and go right along with the other children of their age group. It breaks my heart to know that even in the state where Helen Keller grew up, they are still slowly leaving children behind.

A Battle to Live Free

In April of 2006, my oldest son named Chase was diagnosed with becker's muscular dystrophy. At the time of the diagnosis, I had medical insurance on him. As a result of the disease, Chase had to see numerous specialists and required equipment to assist him in his mobility and quality of life. Approximately 95% of the medical claims filed were rejected due to "pre-existing condition." Regardless of the obstacles, I managed to find a way to provide my son with the needed equipment...
In June of 2009, I was diagnosed with muscular dystrophy (limb-girdle type). I was not able to preform my duties at work and had to resign from my job. I lost a much needed income and health care. As a result of the disease, both Chase and I rely on electric wheelchairs to assist in our mobility. Due to both of us being in the wheelchairs, it has been a strugle to find funding to assist in obtaining a vehicle that is capable of carring two electric wheelchairs and my family. Due to me being on social security disability for less than 24 months, I do not have any medical insurance and my disability income is too much for my son to receive SSI, hence his medical coverage is very and extremely limited.
Todate, our home needs to be modified to allow both Chase and I to move about freely while in our wheelchairs. The doorways to the restrooms are too narrow for us to fit thru and the floors in the home are caving in due to the weight of the wheelchairs...
I wish I knew where to turn for help! If we could obtain a vehicle that would works for our situation and a way to modify our home, life would be much more productive and enjoyable for the two of us.

My Challenging Life

I am a 42 year old woman with a wonderful husband of 23 years. My oldest daughter was born with cerbral palsy and has been confined to a wheelchair her entire life. I have twin boys who both are diagnosed with adhd, one has it a little more severe than the other and is finding it almost impossible to get a job. After many years of struggling and being unable to provide equipment to help improve my daughters life, my husband is now experiencing his third hernia from having to carry her up and down for me. Every time my husband goes to have his hernia repaired, it is automatically $1100 up front for the doctors before his insurance will pay. We have a very low income as it is so we have to put that money down on credit cards. Now having all those credit card bills besides our everyday bills, we are finding it almost impossible to make it through each week. So far I have been able to keep everything paid up, but can see a disaster in the near future. I have been applying myself for jobs everyday I can, but haven't received any offers. We want so much to be able to make modifications on our home to make life easier for all of us but never have enough money to do this. I spend hours everyday looking for some kind of hope to help make our financial struggle a little easier and take some of the stress off my husband, besides having many hernias, he is also under doctor's care for atrial fibrillation and too much stress on him will only worsen our situation. I am so glad to have found this website and even if I can't receive any kind of help, I feel a great weight lifted just being able to share my story.

It is a matter of perspective

I could always see things coming by the body language, read the face full of expression, anticipate the strategy. As I progressed through school I knew I was odd, different, always slightly on the periphery. Everything, in physical and cognitive terms was always a matter of perception. I always comprehended conversations, ensured I was sitting next to the right person so I could copy work. The written work was alway hard work, just plain damned hard work. I knew I wasn't thick, my understanding was better than many in my class. However, the independent written work was unsustainable for school achievement. I achieved academically late in life, it came with the advent of the computer to take away the mechanical pain. Two degrees later, my odd perspective has two names, Irlen syndrome and dyslexia. My self belief was justified, with new glasses I wept on my way home as I saw the world the way every one else did. No wonder they found it all so easy and I found it all so much damned hard work. However, with a work and education record that doesn't inspire confidence in head teacher enough to give me an interview. I am resigned to the fact I will not have the opportunity to go on and inspire a school full of children each year. It has taken nearly four years to retrain myself to be a fluent writer. I don't have to read a book three times for full comprehension. I now find myself unemployed, feeling like I have been kick in the teeth by the teaching profession for a second time. My consolation is that with your work and my intervention my daughter's brilliance can shine. She has gone from struggling with the written word, lagging behind her peers, becoming adverse to the school environment, instead she holds her classroom achievements comfortably. However, the price of the lenses isn't the only cost. It has taken a move into private education to find the right teaching and learning environment and the right school ethos. Financially, I have been penalised because I am struggling to find employment, but at least my daughter will have the same opportunities as everyone else. Please use this to educate teachers that early intervention is vital, give them the toolbox to inform their classroom observations. I have worked in a number of schools and the ignorance doesn't shock me, it is the lack of will to push for diagnosis. especially if the child is intelligent enough to muddle along. The child knows they are under performing and there are only so many years in them before they become disillusioned and disenfranchised with education. I developed a pigheaded, thick skinned and determined approach when I got angry enough, but it didn't stop the insecurity when I became tired and the confusion overwhelmed me. Please use this to insist on a legal obligation of duty and care to embed formal observations in the classroom at least once in EVERY child's primary school career.

Joel makes the sun shine..

I have a Wonderful son Joel Anthony who is my life i love him more then anything, he is blind and has been since birth he has Norrie Disease which is a rare genetic disorder that only affects male infants and causes blindness and he can become deaf along with developmental issues as he is growing up. He suffers from sleep apnea and seizures leaving him hospitalized since he was two months old, he will be 1 on the 29th of May 2010. As a mother i am fully prepared to take on any challenge that comes my way.. im a younger mother at 21 years old, but I know i can do this... Lately its been really hard financially because i am with my son all the time and his father is the only one working and trying to keep up with the bills.. Is there any help out there for families like mine??

Raising a disabled Grand daughter.

Amber my youngest sons daughter (he was not married to the mother, a 16 year old. He was 18 at the time) came into the world much to early, 25 week term pregnancy. She weighed in at one pound nine ounces. And spent her first 3 1/2 months in NICU. Amber has Cerebral Palsy, Degenerative Brain Disease, Seizure Disorder, Cortical Vision, Scoliosis, Wheelchair bound, none Verbal,full care.

The mother lost custody of the child at 21 months of age. She was placed in state care at that time and placed in an intuition. I spent six weeks with her at Children's Medical Center in Tulsa, OK learning about her care before bringing her home. I was in my 50's at the time, and now I am 66 years of age.

I was with my husband at the time and we adopted Amber shortly there after. I left my husband 4+ years ago and moved to Tenn to be near my eldest daughter who will take over the child's care when I am no longer able. Some men aren't worth the effort. Things have been a little tough at times, we struggle through. Good days, bad days. I have been her only constant, always there. And she can be dependent. Doesn't like changes and makes you aware of her displeasure.

With all Amber's many issues she is a happy healthy child. Her birth parents are no longer a part of her life, nor do they try to keep in touch. I tired of trying to keep them up dated. Her birthdays & Christmas comes and go's with only her great grandmother, on her mother's side remembering her.

I broke my hip almost two years and two operations ago and had to start depending on home health care aides. Sixteen hours a day of people coming and going. We had to adapt to changing needs. Parents and grand parents dealing with special needs children have to go with the flow.

I guess that you could say that we make a strange pair. Keep on laughing and crying doesn't help one little bit. I took her care on as I could not see a child spending her life in intuitions and hospitals. I love her and fight her many battles. And there has been a few.

Sierras Dream

My grandaughter , Sierra who is eight has Icthyosis , a cell disorder. she lives with me. She is very sad because she is called ugly and cannot play sports and she loves sports. She had a rough childhood and I would love for one of her dreams to come true. I work and only have two weeks off a year. I would love to see her really feel happy. She dreams of Disney land or Disney cruise and I do not make enough to take her. I wish they had a school for children similiar to her in Fayetteville. AR, She has to go to public school and there are lots of bullies. Grandma

Ella-mai Bale di george syndrome / cerebal palsy

My daughter spent the first 8 mths of her life in NICU with complicated medical problems , she was born with Tretology of Fallots with the missing pulmonary valve (Heart ) and 7 wks prem weighing only 3lb 12oz.
3 weeks later was told she has a genetic disorder called Di George syndrome known as 22q11 chromosone deleted, but no one could tell us any thing on this syndrome no doctors , nurses or parents , we had to seek our own advise through the internet , finally found a charity called Maxappeal which has been fantastic and sent us all the information they have so far on the syndrome.
Ella-mai underwent major heart surgery at only 5mths old she suffered several seizures and infections while in hospital, we had to travel everyday to be with her 45 mins each way . When she came home she had oxygen and a nasal gastric tube to be fed by.
Then when we thought things were ok she caught pneomina and another 2wks in hospital , then she got diagnosed with hemiplegia cerebal palsy , how much more could this little girl go through, weeks of tests appointments and infections it was continious and with a 7 yr old son it became a struggle for us all.
Ella mai currently is doing well she can crawl and is slowly talking some words she cant eat any lumpy food were still on stage 1 baby food , physio treatment she recieves is very poor and you really have to fight to get to c anyone , so i do the majority of it for her , we get rest bite care once a wk which does help, dont get portage as there full !!! and she goes to a special nursery once a week as we can not afford any more sessions and no one will fund it for her because shes only 2.

my goddaughter

my story starts with my 4 year old goddaughter shes been diagnosed with brain paralisis and her therapy is really expencive im tryn to locate the places were delfinotherapy is offer in mexico city i am aware of the lac of help there is for special kids and the fact that the programs are way over prized im looking for sum kinda of help .

The Help He Needs

My son is a 9 year old he is recently in the 3rd grade but has struggled since he was 4 years old with multiple disorders such as Aspergers Syndrome, ADHD, OCD, Separation Anxiety Disorder, and a few more to go a long with them. I recently had a conference with his school and they think he would be alot better of if taught at home. But as a parent that is a student, and my husband was just layed off there is no money to get him the things he needs to do this. Things such as a computer and his books and material he will need. Is there any help out there?

Alex's and my story

alex was born with rare genitic disorder called Pelizaeus-Merzbacher Syndrome were it affects his nervis system and their are 4 type and he has the classic form in 2007 his mother left him after we found out he was getting worse and what his true diagnoise was even though alex really donsnt know she not hear i still think he does know she left alex has lost all cummuateing skills and now not able to get around any more eather. alex does have a step mom and she love him very much and would do any thing for him and so will i i got hurt in 2002 and unable to retun to my job as a carpenter due shoulder and ankle injurys.and i only have a 10 pd weight limit so alexs step mom has to do a lot for both of ous pluswe have a 1 year old and now we have another baby on the way . i wondering if any one know how to help getting a minivan that we need to get alex around with his wheel chair and the cars we have now cant even hold three kids so if we have been turn down by every bank even with the one we have the loan with now and they are current so if any knows a charity that helps with this or can help us it is something we really need thank you ken

A HELPLESS MUM

I have a daughter 7 years old with cerebral palsy. She is both physicall and mentally disable. She uses wheel chair and cannot speak at all. She also has behaviour problems. I cam to Uk in 2007 with her for my studies. Now I am finished with my studies and trying to find work. Since no one else is with us so dont get any support at all. I tried to find out about any help through school and social workers but they say she is not eligible for any help. I dont ask for any kind of living or disability allowances but I do need some respite care for time to time. I cant work cause there is no one to look after her. My friend used to sit with her when i was studying but now she is working so she said sorry. I am her carer 24/7 and only time i get is when she is in school, but in holidays my life is a nightmare as i cant do anything or go anywhere. I dont know if you can help me but i just wanted to knock on another door. I will not give up though cause my child is my world and I can go the other side of the world to do something for her. Thanks.

Kathleen's Struggle

Kathleen did not move much in utero. The doctors forecasted that she would probably have a cleft lip. Further tests didn't clearly indicate that she would or would not have a cleft palate. Doctors urged my husband and I to consider terminating the pregnancy, because she "could have" further complications, such as a club foot, a whole in her heart, speech, motor, or tactile impairments. I was young and healthy. This was our first child together, and we were both christians. Our beliefs were against termination. We prayed for good health, and were told that one in 750 births has cleft lip, isolated. Our hope was that Kathleen would be born just with that alone, and that we would raise a healthy, happy little girl. We were wrong.

Kathleen came out very slim, and floppy. Her cleft, I later learned while her plastic surgeon was discussing her case in front of me, was one of the worst palate clefts he had ever repaired. It was wide. Her nose was wide open on one side. I took one look at her and worried that I would not be able to love her.

Physically, she seemed fine. We have six surgeries overall. Repairs were done within weeks to close the lip, and then the palate came within months. Touch-ups were done down the road in the first 2 years. It was stressful, and scary. She had ear tubes placed, as this was a common side effect to have sinus/ear infections. Over time, she gained weight, and began to look normal.. however, she didn't do the things children do. She didn't roll over, sit up, or crawl. She woke up in the night, inconsolable. She would not go to bed as an infant, and sleep. The only thing that would calm her was to get up and carry her around outside. Three feet of snow would be on the ground, and we would be walking around on the porch in slippers and robes, calming our little girl.

At times, after feeding her baby food, all of the food would come back up. She would vomit for 45 minutes straight. Later, the doctor estimated that she probably suffered from abdominal migraines. Eventually, she grew out of it.

Fast forward 10 years. After lots of physical therapy, AFOs on her feet, chiropractic visits, MRDD classes, and wheelchairs, gait trainers, and walkers, Kathleen gets around with assistance. She needs a hand, and cannot go down steps very well, but she goes.

She smiles always. She says "hi" alot. She only can speak a few words, and not necessarily when she should. Sometimes they come over and over again.

She wears diapers, and doesn't feed herself, but she attends school every day. Her sunshine touches every person she meets. Many people have come up to me to tell me about how Kathleen has touched their life. She is a challenge, but she is sheer joy.

We are about to enter puberty with Kathleen. Another huge leap of faith that God will make all things possible, no matter what we face.

I am thankful for Kathleen. She makes me slow down, and find the joy.

My son with Cerebral Palsy

Adel is 11 years old,He had a birth trauma. He developed in the first year of a life normally, then his condition became will worsen. He has ceased to walk, has appeared strong spastic, brain growth was slowed down.
Doctors have made the terrible diagnosis the Children's cerebral palsy and Microcefaly.
Adel very clever and cheerful child, he very much wishes to be as all.
For his wish come true, he requires constant visiting rehabilitation center.But we don't have enough money.

my special angel

I am a single dad that, most of the time feels like a one-armed wallpaper hanger in a wind storm. My wonderful son Jeremy was born with several disabilities including Sensory Processing Disorder and ADHD. Jeremy "seems" perfectly normal to those who meet him unless trained in psycho-therapy or occupational therapy. This makes it especially difficult for me to explain Jeremy's behaviors to other parents and teachers who sometimes think I'm making excuses for him or trying to "mother" him to much and I have even been accused of being his enabeler.
I thank GOD every day that I was shown a book entitled"Sensational Kids" by Lucy Jane Miller that describes my son's behavior to the letter in the section concerning sensory seeking. My child is a sensory seeker...He has no concept of personal space or personal property which made living with him difficult especially when his brother and sister still lived at home.
I aquired full custody of all three in 2003 and felt so blessed that I can't begin to tell it. I have since tried to relegate my time between the three evenly but Jeremy always made that difficult. Jeremy, now 16, still wants 50 hugs a day and I always try to balance my desire to hug him and the advice from therapists that tells me Jeremy needs to learn about personal space. I don't know if I'm helping or hurting sometimes, but I do know that he seems to be gaining ground towards becoming a "normal" (I hate using that word) person.
Having been layed off from work has helped our personal relationship but has burdened me with financial problems on top of everything else, but, I know GOD has a plan so I try not to worry. I certainly hope that the economy will improve soon. Meanwhile the one-on-one time with my son I will take as a blessing. If there is anyone out there in a similar situation I would love to hear from you. I can be reached @ williamunderwood@yahoo.com and even someone to talk to that understands even a little of what we're going through would be such a blessing. Hope any who read this continue on their journey with hope, resolve and much prayer. GOD Bless You

determined

Im a mother of two boys an 8-year old and an 2-year old. My oldest son has a developmental delay and speech problem,which his condition is one of a kind. What I was told was that he is missing some chromosomes (10 and 16) and thats whats causing the deletion. My son condition causes him to act out. He is very hyper, talks alot and sometimes aggresive towards other kids and adults. My son developmental doctor put him on alot of different types of medicines which all the medication puts him to sleep. But the only medicine that works the best to me is the clonidine. I get very fustrated because once the medicine wares off he's back to his normal ways. Even though his condition is one of a kind I was hoping for a miracle one day that he can be put on a medicine thats for him even though I cant afford it. I dont no what to do as far as my options are because he need alot of help and I dont no what to do as far as the medication he's on already. I would like for him some day to be able to sit and learn a little more but he has a short attention span. And with the medicine that he's on puts him to sleep or causes him to be drowsy and he cant learn that way. If there is hope or anything that I can do to help my son could any one please reach out to me please and let me no what I can do or what my options are. It would mean the world to me.

9 yr old Dwarf ( spondyloepiphyseal dysplasia)

I'm tring to find help for this family. they need to get thier house redone to meet Suzie's size. I'm sending a web link about a story that was done on her. Any info would be wonderful. Thanks a family Friend, Crystal Alford
http://www.wkbn.com/mediacenter/local.aspx?videoId=15850@wkbn.dayport.com&navCatId=10

Raising Rachel

It sounds like we may have a great deal in common. We too have a child with special needs and as such we have gone througn a tremendous learning process around all aspects of the 17 years of our daughter's upbringing. Learning in areas ranging from how to distinguish between service providers who are just in it for the money from those who really care or public school districts just providing what they have rather than what special children actually need, to dealing with insurance companies who automatically say no or the frustrating legal process which thwarts justice for our kids.
Our new adventure is identifying the next "appropriate" educational setting....as our daughter has only just begun to learn. Naive to the realities of public education we "trusted" our very prestigious school district to do the right thing for our daughter only to find by the 6th grade she was functionally illerate and couldn't even tell time. In constant cooperation with our district we pleaded for more help and were told to accept the fact our daughter can't learn. We wouldn't give up, so we looked beyond the district's auspices, researched the situation, and intervened with the LindaMoodBell learning process [and soon thereafter a private High School for kids like our daughter], and low and behold six years later she's reading 6-7th grade level and we continue to see growth. Hence our current challenge, finding the right post secondary educational setting that continues to provide her the support she needs while preparing her for the work world and self sufficiency. We'll make it through, I'm sure [as we have always done], but what bothers me more is the bigger problem, what's to become of this ever growing population of individuals in the autistic spectrum? Our public schools are disgustingly ill prepared, and there may be private institutions who fit the bill, but these are tremendously expensive and therefore only readily available to the rich and famous, but the real issue is what do our kids do in the workplace? Right now the guidance we get focuses around financial planning so they'll be eligible for SSD, or signing them up for OMRD. So, all that's available to them is public assistance or looking forward to being greeters in Walmart or baggers in Stop and Shop? The sad thing is this population of individuals is so much more capable...if only given the right education and ultimately the appropriate work situation. It's funny in the last 17 years I've met more special kids than most folks meet in a life time and there is such a strong commonality among each. They tend to be literal learners who learn by repetition, and although social queues may be invisable to them without proper coaching, they are devoutly loyal, kind and trustworthy. Things "typical" children understand through experience our kids just don't get without multisensory explanation and example, but nevertheless each and everyone I've met has a special gift, my daughter's happens to be an above average memory and a propensity to help people. It's almost like they exist in a parallel universe. So, why can't our society at large, in particular employeers be educated to the existence of this viable yet "special" population of potential employees? We're coming up against, I believe, the next new "minority" which desperately needs the pendulum swung in their favor to get them off the public assistance roles into the role of gainful employment and self sufficiency. As a Manager in fortune 100 companies for nearly 30 years I know from experience all employees have their quirks...but I guess the quirks of our present employees are acceptable norms, so who's to say we can't integrate the idiosyncracies of our special needs populations into acceptable norms and identify employment opportunites [beyond greeters and baggers] our kids can excel at? Herein lies my angst, being a manager by profession my job is to meet my companies objectives by leveraging the skills and experiences of a team of individuals...each with their own area of expertise. Early on in my career it became clear to me that the best way to do this was to identify what individuals on the team exceled at and enable him/her to leverage those gifts/skills. So why can't we apply the same logic to the world of work for special individuals? I know what has to be done to accomplish this starting with the identification of job types that special folks can excel at and then lining education up with those roles, but I'm at a loss for how to go about getting the support, and the access to information required to actually accomplish this. As with most parents of a special needs child, you go from shock to denial, to desperation to understanding to neverending perserverence to wanting to help others not have to go through all the steps you've had to go through. My question to you now is can you help me with this quest to make the world of work more accepting of our special population of human beings??

Help to child for live

There is a poor child in ward 10,Teaching Hospital Ragama,Sri Lanka.He is having Bronchiolitis Oblitarance disease.This is not curable but can live with concentrated oxygen.They cannot spent for oxygen concentration machine which is available in Sri Lanka.(cost Sri Lankan rupees 130000.00) Therefore child is in the ward by using oxygen.
please help him to go home.
More details 94 0112959261 Extention 210/310(ward 10)

The Wings of Love

My story begins with a nephew who was born terminally ill with CP. The loss of Randy will live with the entire family for all of the days of our lives. It has been 15 years since he passed. Now we are once again faced with CP. My grandson who lives at home with great parents has been diagnosed with CP, developmental delays, breathing disorder, and swallowing disorder. His diagnosis is terminal but we hope to have him for at least 6-9 more years. His parents struggle every day to make ends meet. Medical bills keep coming and there is very little help available for a middle income family. They both work and thus finding any kind of help is difficult. Overwhelming medical costs put everything at stake. The sad truth is that if they gave Coldin up to the state, every need he has would be met all the way down to clipping his toe nails. THIS IS NOT AN OPTION. We will do whatever we need to in order to keep him at home in an environment that surrounds him with love and keeps him with his siblings for all of his days. Because of this we are working on a "grass roots" project to open a skilled daycare for disabled children in Lawrence County Missouri. It will be known as the Randy and Coldin Playhouse under the umbrella of the Randy Coldin Corporation for Disabled Children now in the process of being established. Our plan is to provide skilled daycare, respite care, family education, and resource assistance. Our heart goes out to every family faced with the financial burdens of a disabled child. Our only hope is that we can step up to the plate as team players and create the resources that our communities lack. Any advice would be warmly welcomed.

Billy's Fight

Our Son, Billy, was born May 5, 2006 in Orlando, Fl. He was born with a very large hematoma on his brain due to a undiagnosed placental abruption. He underwent brain surgery at 5 days old. He has since been diagnosed with Cerebral Palsy, Spastic Quadriplegia, Seizure Disorder, and is blind in his left eye with minimal vision in his right eye. We come from a middle class family, despite that, we find it very hard to keep up with his ongoing medical bills. His first 2 months of life resulted in medical bills reaching $750,000. He has been denied or taken off of Medicaid 3 times in his life, due to us making mere $100's of dollars too much to qualify. Them not taking his disabilities into consideration. He was prescribed a w/c at 12 mos old by his physicians and therapists, however, due to the hoops they made us jump through, he received his wheelchair finally at 2 1/2 years old. He was prescribed AFO's and hand splints at 1 year, and again due to the hoops, he finally received them at 3 years old. He is a charismatic little guy, with bright blue eyes and blond hair and a smile that will light up the room and a laugh that will bring everyone to their knees (doubled over in laughter themselves). We are currently still not receiving much aid with his medical bills, and my private insurance alone does not cover the majority of it. We live pay check to pay check just to insure that his medical needs are met, often being left in the red. It's time that the government realized that individuals with such disabilities should not have to spend years to try and get services.

My Trevor

Trevor was adopted from Guatemala at the age of 12 months. When we return to Michigan, we realized that Trevor was significantly delayed. His caring spirit has shone through. It is just sad that he can not access an education due to his illness. I just wish I could help him more and pray that we find the answer to his challenges. Support is no where to be found. How can one continue to pay the medical cost and supplies in an economy where there is no thought to the high cost of caring for a child with special needs. Bankrupcy may be our only option.

Mary My Little Warrior Angel

My daughter Mary, my Warrior Angel was born at twenty eight weeks gestation with under developed lungs an enlarged heart, a stroke and failure to thrive. She is still cognitively delayed by three years. My beautiful nine year old has right side weakness and a lot of frustration with her disability. That is alright because we were told over and over that she would not live another three months that she would not walk or even talk. She still speaks softly and has a hard time with things the are easy for other children, but my little warrior Angel is still here fighting! My dream is to get her an indoor/outdoor stroller so she can enjoy the mall when go to larger cities. My dream is that she never gives up on proving she is a warrior angle!

I love you Mary my little angel,

Dad

our special needs child

hi my name is angela cox mother to aurora 3, austin 2, and logan 8 months. we have known since logan was born that something just wasnt quite right and recently we found that not only does he have one rare chromisome disorder but he has two rare disorders.. logan has therapy twice a week at the local hospital as well as in home therapy twice a month. he also sees specialists (which are 2plus hours away)once if not twice weekly. my husband works two jobs so he is rarely home. i am unable to work seeing as how logan needs special help and because of the appointments..we bought a new house in august two months before logan was born and now are struggling with day to day expenses. if anyone knows where we can look for some help of any kind please feel free to let us know...

sincerely angie (logans mom)

My son with Cerebral Pasly

My son was born with Cerebral palsy is now 4 years old and stil have Cerebral Palsy I just wonder if the dolfins will heal him I truly want to believe it I have tried so many things and I know horses can but do not have the money for this treatments.

Thank you

Chantelle

My little boy Jonathan

I don't know how to begin to write this but here goes... At 28 weeks pregant with Jonathan my right kidney stopped working, after a long 7 weeks of pain and tears the hospital decided to induce me at 35 weeks. They said he would need help with breathing and eating but when Jonathan was delievered he was absolutly perfect. He had no breathing probs and certainly no feeding probs, so after a week in hospital with him we were both allowed home.
The first 2 weeks were great, his elder sister Megan who's now 6 was able to bond with him and we now were a proper family and put the last couple of months behind us.
After the initial 2 weeks i started to notice Jonathan was piling the weight on, i couldn't keep up with the feeding also he didn't seem to be looking at me. I just knew there was something wrong with him but i was too scared to do anything about it. But when he was 8 weeks old and he was constantly crying for food and i was getting no glances or gurgles back i decided to take him to the doctors where he informed me he thought Jonathan was blind and refered us onto a peaditrician. We were seen quite quickly and after several eye tests, brain scans etc he was diagnosed with visual delay maturation and told over time his sight would become normal and then his development would catch up. But i knew deep down there was something else, he has these weird body patches on his chest that look like hes been burnt, he's got see through patches on his leg and chest, he was having muscle jerks all the time, he was angry and frustrated, he was always hungry and the biggest thing was it was like he wasn't in our world. You would look into his eyes and there was nothing there, i don't think he knew i was his mummy and that i loved him more than anything, i was giving my life up for this little boy who really didn't know i was even there. Every time we went back to the peaditician i would express my concerns and more tests would be done and they would keep coming back as NAD and the words that we kept hearing was we just have to wait and see how he turns out. They are the most annoying words in the world i love my little boy very much and to be told to be patient and don't plan anything because we actually are going to wait to see how he turns out rips my heart out every time i hear them. How as a family are we supposed to live and pretend everything is going to be ok as it quite clearly is not. Jonathan i 16 months old now, he is able to walk in a fashion! he can't speak any words just grunts, he can't communicate at all which leads to the most violent tempers, he head bangs, makes himself sick and falls purposly of anything he can clime onto. He touches hot radiators constantly playing with plugs, broke our tv with hitting it, scarred our daughters face with scratching her, bites and nips anyone within his proximity and is actually a bloody nightmare 24 hours a day as he doesn't sleep either, just naps every now and then. I am finding it increasingly hard to get through a day intact gone are the days of doing my hair and make-up, going to work and having adukt conversations about silly things, no my life at the ripe old age of 27 is looking after a severly disabled little boy who i can't understand or do a thing with, being looked at when i go to the shops as he growls at people and all my friends have disappeared as they don't know what to say, but as usual the doctors say to me we need to wait and see how he turns out! I need a safe room not only for Jonathan but for our sanity as a family for just that precious half an hour rest but can we get funding oh no and why not because there isn't a name to Jonathan's condition. I have never felt so alone in all my life and to top it all of my daughter has had to see a child psychologist as i thought she was having problems because of Jonathan but they have said they believe Megan has apergers syndrome so here we go again more tests.
I have read your book and many a night been left in tears as i know from the words you wrote that at some points you felt exactly how i do now and i expect every parent of a disabled child feels but people like you and me are not just around the corner able to chat over the latest soul detsroying thing your child has developed, the people just around the corner are parents of "normal" children who go on about so and so having chicken poxs and how dare they send them to nursrey before the spots have gone because their precious child may get them! I just feel that the help isn't out there for disabled children and there parents we are expected to deal with it because they are our children and not theirs, they tell you alsorts of things then go home at night to their massive house that we have paid for through taxes sit on their £3,000 sofa have a nice quite evening and decide how to spend there weekend, wereas people like us are trying despretly to find out whats wrong with their special child, what can be done to make it easier for them and their siblings, how to survive just one more day because the postman just might bring that letter that has found whats wrong with him and that means no more explaining to endless people when he hurts them, no more wondering what nasty thing he going to develop next and no more expectations.

My Wonderful Ashley

I have a daughter named Ashley, with Cerebal Palsy. Ashley is very smart, but trapped in a body that wont let her do much for herself. Ashley wanted to move on her own, so I fought DDA to get funding for her so that she could get residential services. Also, it was hard for me as a single parent to keep a job because of the needs of my Ashley. So Ashley moved to a residential home with 3 other disabled women. Ashley thought they would do more with her but come to find out they dont. They just feed them, bath them and let them sit. It is very sad. Ashley cries all the time. (but I do bring her home every weekend) The problem is, they will pay them to help take care of her, but wont help me to do it. They would let me lose my home before they would help me when she was home. My question is why cant they help me stay home and take care of my daughter instead of them just warehousing my daughter and them paying thousands of dollars per month for them to take care of her. I took care of my Ashley for 23 years on my own and I mean I struggled. I almost lost my home every month, because I struggled to work and take care of her. And I would do it again, because she is so unhappy. I have to visit her every day there, because she cries because she is unhappy. The system is so unfair. Why cant they help me take care of her, instead of them..........................

My Special CHild

I have a seven year old son who is diagnosed with Global Developmental Delayed, Cerebral Palsy. He was advised for a Physical and Occupational Theraphy because of his condition. He was noted as an atetoid. He is not yet walking but he go schooling in a public school for special children but as his mother i want to find person who can help me in sponsering my child. I want to give him a better future but i can't afford to give him his complete medication. I am hoping that in this way, there will be someone who could help me in his problem.

I respectfully send my regards to the person who can help me. Thank You and God Bless.

Accessing appropriate education

My friend's 9 year old son has DAMP and is on the autistic spectrum. He had a number of teachers in a mainstream school before being sent to a unit attached to another mainstream school which specialises in autism. Unfortunately, he was not able to cope there, as they were not able to deal with his behaviour in a way that helped him, telling him he was 'naughty' if he became angry, and refusing him 'treats' such as horse-riding and other activities the children in his class were doing. In reality, he is an intelligent young boy who can't cope sometimes with stimuli around him, i.e. noises, children looking at him in the wrong way etc. Instead of teaching him coping strategies, they would allow it to escalate before he would 'kick off' and excluded him from his class, putting him into a much younger class. As a result, he lost all confidence in himself and became extremely distressed when returning to school.
My friend had no choice other than to pull him out of that school, with a view to getting help in placing him in a more appropriate school. Unfortunately, however, Northampton Council have refused to help, point blank, with them today threatening to take her to court if she doesn't re-integrate him back into the school - that is despite the headteacher admitting they are not able to cope with him. They have not even helped my friend in looking elsewhere.
Fortunately, we have got the charity 'Clearly Speaking' on our side, but it is still an extremely slow and laborious process. It seems incredible that the council can prosecute a parent for keeping a child off school, yet they can't be prosecuted for not providing a child with an appropriate placement.
My friend also suffers from depression, and it takes all her strength and will to keep going each day.
I can't believe in this day and age that children with disabilities are treated as if they, and their parents, are at fault for having the disability. I am nearing the end of reading your book, 'Henrietta's Dream', and just can't believe that families can be treated this way.
I totally support the need for a disability Ombudsman - why is it that we can have a Drugs Tsar, to assist in all problems related to the addiction of drugs, which is, in a way, a self-induced lifestyle. Disability is not a lifestyle of choice and yet the support is abismal. Alcoholics and Drug Addicts can also be awarded DLA, despite this being a self-induced problem, yet I have recently had to fight for my own son, who is also in a special needs school, to get full DLA.

It makes me worry about what lies ahead of our children when they are adults - I believe that the support for adults with disabilities is even worse than that for children.

Somethings needs doing for the children and adults with disabilities and it needs doing now - although they may not cause crime to fund an addiction for drugs, and therefore do not cost the government as much as addicts do, they need to be understood and have their needs met now.

Jack & Ben's Story

I am the mother of two severely disabled little boys, Jack 7 and Ben 5. Both boys are in wheelchairs, they have hearing and vision impairment and Chronic Lung Disease. Despite their impairments Jack and Ben are two incredibly happy, interactive little boys who love going to the beach and watching Spongebob on TV. Jack and Ben have been badly let down by the lack of early intervention services and as a family we have been let down by the lack of support we receive. We have had to fight for the miniscule, mediocre services we receive. We live in Sydney, Australia and disability services here are probably amongst the worst in the developed world. They used to be better however the State Government that is currently in power simply do not care about disabled children and their carers so we have seen a downgrade in disability and early intervention services. We are at a stage now where we are looking at having to fund any therapy privately, at great cost.

I have always maintained that despite the daily difficulties we face in caring for Jack and Ben the main difficulty lies in having to deal with incompetent and uncaring bureaucracies. The constant fight for services is draining and demoralising and makes caring or two disabled children much more difficult. It merely highlights the mean-spiritedness of those in power.

I saw "Diary of a mother on the edge" recently and I could relate to the awful time the Spink family had in accessing services and supports - we have the same battle here in Australia.

Despite the awful time we have in dealing with uncaring, incompetent bureaucrats we aim to give Jack and Ben the best quality of life possible and they are very happy little boys.

Just a shower!

We are an active duty army family that is being moved from base to base across America. We have had to fight tooth and nail for every piece of equipment we have. We just found out we are heading to teaxs-Fort Bliss. Although they "may" have housing for us, they definitly do not have a wheelchair accessable shower or bathtub for us to use. On top of that, they will not assist with the cost of making the shower wheelchair accessible either. My husband and I are looking at ways of doing it ourselves, although neither of us have a clue on what it takes to do this. My son is about 5'9' and weights around 160 lbs. Should be an interesting 2-3 years at Fort Bliss!

Losing my battle

My duaghter was born with T.A.P.V.R, In her second hour of birth she had four major heart attacks, While having her open heart surgary, She had another heart attack, (I'm amazed on how strong she is).
And she had another one while in ICU, The doctors where making their rounds and helped her on time. (Thank god) Well needless to say she was but on EKMO mechine after her last attack.
She is about to turn 2 yrs old and she is still on mild life support. We got a doctors order to deliver H2O at our home but medi-cal says that she's not covered. (Oh by the way my duaghter is at home with us). Know we barely are getting little things that she needs, like wheelchair,ped bathtube,medical supplies,trach for her neck,extra G-tubes=she never eats though her mouth, to many other things to list, she gets PT and OT, which OT comes to my house but PT we have to go to them and we tried to explain to them that our duaghter is on the life support and she needs constant suctioning for her trach, They tell us that if we don't come that she will be bump of the list and that they will report us to the city for neglect.
I tried to work with them on diffrent things but they keep telling my wife that they rather deal with her becuase I'm diffacult to work with. (Do you know how that makes me feel, all I'm trying to do is make sure that my duaghter gets the proper care).
Over and over again I tried to get information about getting funding for a van with a wheellift and enough room for her medical items when we have to go out but they keep telling me that I'm just trying to take advantage of the situation, I really got mad and that is driving my up the wall that people think like that about me having a baby in this condition.
I'm not sure how to say this other part but she also suffers from something Palsey. Look I know that I'm not a very well educated man,but never the less I have a baby girl that needs me to speek for her and if some people think that I'm not fit to take care of my kids then they really don't know LOVE in their heart. As for the doctors that told me to give her up,
well you know what to do with yourself.

Struggle to get my son into residential school

My husband died when my profoundly deaf son was five, i had visited the school already with my husband a year before he died and we both decided it was the exact school for our son, i applied for a place a year after my husband died and we were turned down, a year later i tried again, my son was offered a place but there were issues with funding, the school wanted to start him on a higher banding and the LEA wanted a lower banding, my son was supposed to start in Sept 2003 which didnt happen so after half term in October i lost my temper and called our local County Councillor and told him the whole story finishing off with "I voted you in what are you going to do for me?" He took up the challenge and got the head of education in his office and discussed it with him, the upshot was a letter and phone call TWO days later to say my son could start in ten days time!

My Child Has Brittle Bones (O.I.)

My son is 7 years old and has Osteogenesis Imperfecta A.K.A. (Brittle Bones Disease). He has broken several times and it has caused me to not be able to work. However, I do go with him to school and I have been able to work as a lunch mom for one hour a day. The only thing out their in my situation is S.S.I. and a great family. I am currently fighting for my son to have an aide in school as well as finding out what other options we have. I am hopiing that S.S.I. will increase. But, that doesn't look like that will happen. It seems that you child has to be mentally impaired in order to recieve a full increase in the checks.

Fight for Ryan .......3 years on

Hello again
I havejust read more of these insoirational stories on ths site, my heart goes out to each and everyone of you and hope things improve in the ways you wish forthose you love.

Ryan is now 14 , he is so so handsome, still happy and very much loved.
struggles do still continue ......We did have a bit if a struggle to get him into his secindary placement but not as big as the battle for transport!!! I now escort him myself as the escort and taxi firm just pulled out after one week of taking him to school. I cannot put him through more change than is necessary for itto probably happen again. Turns out they had another child in the car when he should have been 1-1 and the driver smoked and Ryan was not used to this so he would pinch hisescort as he has no speech or other communication to let her know! (awful time)
Escorts apparantly dont realise that these children are 1-1 as because they have extra needs!! and I didnt realise that taxi firms can just stop and leave you in the lurch at a drop of a hat!
The school he goes to is the one I wanted him to stay at when he was younger and if only he could have stayed there when younger I am certain he would have made lots of progress and he s so so happy.
Our battles at the moment are with the OT's and housing issues again, a referral sat on a desk for over 5 months without even being looked at and then a further 3 months on I havent heard from them!!!
It is christmas / new year 2007 / 2008 and it is always an emotional time and for some reason more so than before I am oh so tearful! Thoughts of who will be with Ryan when we have gone are becoming further to the front of my mind and it is hard to block those thoughts out.
But life goes on and who knows what the next 3 years will throw at us, wathc this space............
take care all and Happy New Year 2008

Wishing to walk!

On Febuary 27, 2006, Hunter Page was diagnose with Spinal Muscular Atrophy (Type II). At 22 months old we thought everything was ok, but after visiting a pedeatric neurologist and have testing done, we were told our son has a rare and genetic neuromuscular disorder. Since Hunter was 12 months old he has only ever taken 10 unassisted steps. Now Hunter is three and is highly intelligent, he know that there is something wrong with his body. In August Hunter and I were sitting in the living room and he said mommy, I can't walk because I have Spinal Muscular Atrophy. My heart broke over and over again. I said to him, that is ok that you can't walk but he looked at me with those blue eyes and said but I wish I could.
Thanks,
Allison Page

The LaChris Connection dba The LaChris Foundation


We are the parents of three wonderful children; Laura, Ben and Christopher and we enjoy a marriage cushioned by God's grace. Our oldest and youngest were born with cerebral palsy and other disabilities. Though faced with challenges, the blessing of our children taught us to focus on "what matters in life.” With the help of specialized services and equipment, and lots of fantastic nannies, our family
has enjoyed traveling, camping, parties galore and respite for our marriage. Our story also involves heartbreak and sadness. In the spring of '04, Christopher (age 10) passed away. Inconceivably, a year later, Laura (age 16) also died. Both deaths were sudden and unexpected. Our world was shaken. We miss them dearly and our hearts continue to mend. As a part of our healing, we'd love to share some of what we've learned. Through forming The La Chris Foundation we hope to provide ideas and resources that can help other challenged families live life to the fullest! Thank you for any support you might give.
www.lachrisfoundation.org

Keith

Hello, my name is Sherrie Horchak i am going to be talking about my family. Also, the main little man in my life, Keith. Keith is a 12 year old boy that has been through so much.
Well, let me tell Keith's story. Keith has CP, HUNTINGTON'S DISEASE, HE IS TUBE FED, BLIND, CHRONIC ASTHMA, MULTIPLE LUNG ISSUES. HE IS ALSO MENTALLY RETARDED. HE ALSO WATER ON THE BRAIN, BUT NO SHUNT.
HE IS ALSO PHYSICALLY DISABLED- HE CANNOT WALK.
Keith's father, Ethan is also disabled. He also has
Huntington's disease, and he is also in a home currently. He doesn't have much longer, he is in the last stages of the disease.
Me, as a mother, had to make difficult decisions in Keith's healthcare. I have went through many jobs because of nursing care and also the nurse's hurt Keith and steal from my household. I have to have him on the second floor because in my house, the bathroom is closest to his room. The nurses are making it difficult for me because they refuse to lift him up and down the stairs. I have to make a difficult decision to buy a new machine to lift him up and down the stairs, because the nurses refuse to lift a 46 lbs child.
I am very depressed over these matters, I have been on medication for this. It's tough on me, because i have medical issues of my own, and can't afford to pay for them. Keith is always first, no matter what, and everyone is making this very hard for me. I also do not have much family help and times are getting harder and harder as we go along.


Sincerely,
Sherrie Horchak

One day at a time

On February 9, 1995, my son and I were in a terrible car accident. Both of us were hurt; but my son (just 13-months-old) received a traumatic brain injury. While we were in the hospital-rehab facilities, my husband and I did not know about sick children. We felt so hopeless. Would our son survive? How were we going to deal with him? I remember one little girl (around 2-years-old) who was hit by a drunk driver. She also had a traumatic brain injury. She had surgery and was in the rehab center for a couple of months. We watched her make a full recovery. Her mother and father were not there. When her mother did come, we found out that she lived right there in the same town. The mother didn't have a job. I was mad at this women that I didn't know. She just didn't realize how blessed she was to have another chance....well her child will have a chance to be independent. My son didn't get better and we were scared to bring him home. I learned to put in his NG tube and had to use instincts on how much pediasure to give him. If you give him too much, he would vomit. We always tried to give him just a little more at every feeding. One day, I was eating a soft chocolate chip cookie. I noticed Henderson chewing as I ate the cookie. I put a little piece in his mouth and he actually made a smacking sound. I cried and continue to give him a little more and he ate it. He had trouble; but actually chewed a little and then swallowed. We slowly started blending his food. He's eating a blended diet along with pediasure and water. My son is now 13. He has grown so much. He smiles and says a few words. I am now enrolled at a community college taking classes part time. Hopefully I will get accepted into the Associates Degree of Nursing Program in January. I have been looking for grants to help with caregiver services. It would be great if we had help with transportation. It seems like there is no one who can give you simple information on anything. I know that there is some type of help out there. With me going into nursing and my husband being employed, I guess that is when we would be able to afford to get some of the things he need.

The missing piece of my complex jigsaw

Hiya my name is Talina and i live with my partner David and our 3 sons, one of our sons is a special needs child, the middle one. His name is Ashton and he is 7 - he was born on the 1st of January 2000 so he was a Millennium baby - 10 days overdue! At first things were fine, he was a very colicky baby and cried a lot, he was very lethargic and didnt eat a lot, when he was 4 days old he was sent to the special care baby unit and then had Borderline Jaundice... for which he had phototherapy treatment.. he perked up a lot and then ate well apart from him having reflux and being sick a lot!! The next thing was he wasnt holding his head up at 3 months then i was sent with him to see a Paedatrician.. he had tests etc and was told he was a floppy baby! Then we were told he had a Global Developmental Delay... he has had many tests since... lots of Genetics, urine, 2 Mri scans on his brain and they all show normal!! So frustrating as i am sure you will understand... I dont work at all.. i cant with having Ashton, Ashtons dad works though... Ashton is a very strange child, you know he does have a low IQ but has just started reading and is very good, he reads in Welsh as we live in Wales... he has low muscle tone but walks well... he hand flaps when he gets excited, he has full time one to one help at a mainstream school.. he has his sensitivities to noise and also has annoying habits like always having to shut the door! switching plugs on and off and also the lights! he likes to play with water and also empty bottles down the sink!!? He has a few problems with his eyes aswell, he has Nystagmus (an eye jerk) also photophobic (sensitive to light) so always wears a baseball cap outside... he wears glasses of course... Well we are just living in hope that one day we will find out what is wrong with him... half of me thinks that it was the Borderline jaundice that did this to him ot the lack of feeds because the hospital were trying to get me to breastfeed him and i couldnt because he was born a snuffly baby and wouldnt tolerate being breastfed at all.. i have sent a complaint to the hospital but dont know if i can arhue the case with them.. ? the story is ongoing... thanks for listening, Talina Leggett.

he is my simon!!

im blessed with a hansome, charming,very funny 15 year old

a typical teenager except that he keeps his room tidy thank god for small mercys (ha ha )
oh and he has aspergers

im a single mum of 2 and lifes been bloody hard
nothings given to you no advice is offered

but i would not change a single moment with him hes my simon

compared to some people i got away lightly

but it took walking out on my kids twice before i got any help

( police were here
and i called my respite carer
when she turned up
i walked out and along to the end of the road )

all i can say is thank god for my respite carer

she was the only one who gave a damn about us
and told me what to do to get the help we so needed
but it should never have come to that

when will our kids get what they are entitled to ?

we dont want millions just whats needed to keep our kids at home

and for all you poor parents out there still fighting

my thoughts are with you keep going
not only will you help your own but evey child that needs it XXX

Seeing Through

We have five children now aged between 9 and 21; all of them are in full time education. Our middle child, Tom, is now 16 and five years ago he was diagnosed with Asperger's Syndrome and chronic uveitis. Tom is now blind in one eye and he faces an uncertain future regarding his remaining sight.

That he still has some sight today is due to the fact that we fought to find the best occular immunologist in the UK - based hundreds of miles away from where we live. Like the Spinks we were refused all forms of support. The consultant offered his services free but the travel and accomodation costs have mounted to thousands. We've still held on to our home but I often wonder at what cost to the family. Holidays never had, music lessons cancelled, children always going without...year after year. No help from the education system either. He is denied support because of his academic ability. But he has lost so much ground that it is unlikely that he will achieve his ambition of going to university.We are denied support because we both work. And so our lives and his future have been steadily chipped away.

We have never given up but I have few friends now because not many people can thole the fact that I refuse to let Tom feel like a victim or to allow our family feel like victims. We don't fit the picture of gratefulness fighting against adversity. Because, for us, the fight is not against what life has given us but what has been consistently witheld from Tom and subsequently his siblings.Tom has enriched all of our lives. Tom helps us hold it all together.

I watched Henrietta in the documentary last night and felt a resonance when she said "We are drowning on land so maybe we can float on the sea for a while." Here's to all of us who find ways of not only surviving but who do so with dignity, creativity and flair. And who aren't afraid of seeing through the system for what it really is and shouting it loud from the rooftops.

Services

It is not really a story. We have 2 disabled children - 1 has aspergers syndrome, 1 has severe autism- cannot speak, is in nappies, etc.
We live in Cambridgeshire. The level of support is a complete joke. It's 6 hours a month at the moment. Our oldest son was referred to a carer's group that has suspended activities because of budget cuts.
What is the best way to try and improve the level of support apart from taking our youngest to Social Services?

Best Regards

Bill O' Connor - St Neots Cambs

Nia Janel Harvey

My daughter, Nia Janel Harvey, is a 12 year old who cannot talk or walk. In addition, she is severely mentally delayed. Nia is very heavy and I do not have easy access to our home which has five brick steps to get in the house. Nia is in a wheel chair and only uses her right arm. She is unable to help get herself in and out of the house. Our bathroom is not handicap accessible, so it is difficult getting Nia in and out of the bath tub. If you can help, please let me know.

I am a teacher in the Chicago public school system, but with the medical bills that I have to pay, student loans that I must pay back and carrying for our other basic needs, I cannot afford a ramp at this time or a handicap accessible bathroom. If you can help by steering me to the right sources for help, please let me know.

Chris

Our son Christopher, born in 1960, has Down Syndrome. He cuirrently attends Orchard Hill College of Further Education five days a week, and also enjoys swimming and horse riding with support workers from Lambeth Mencap. He has twice left home to go into residential care with dreadful results each time. My wife and I our well into our seventies but will continue to care for him at home until we can no longer cope.

Dustin's future

My four year old son has recently been diagnosed with osteogenisis imperfecta this also goes along with tracheal larnygeal malacia. Ever since he was born we have been in & out of the hospital with difficulty breathing episodes. He broke his arm @ 18 months & then was running in the yard & broke his leg playing with other children this pas year. That is when his ortopedic MD told me he has OI. The whites of his eyes are blue. We then proceeded to an genetic MDwho confirmed it. These children have special needs & your concern as aparent is exercise which the best is swimming & of course being finacially strained we cannot afford an in ground pool. Then your next concern is where do you send them to school? I have to work everyday for a living & I cannot home school him. As of right now he functions well however he can never play sports participate in PE. And you know all children want to be rough @ times while playing. I know if he breaks more bones the weaker they will get & the less likely he will be to heal well & THE STRONGER CHANCE OF BONES HEALING CURVED. I wish our government would do something to meet the needs of theses children. I am a nurse & I fully understand the extent of his disease & wish to do something to protect him from further harm. I am afraid to enroll him in school with other children including pre-k. What is a parent to do to protect their child when they know they have to work & cannot meet the needs of your child to protect them from the normal simple things in life that we take for granted everyday. He is such a special child. I have no monies only debt to secure him safety for educational future or physical health future. & then his children will have the chances of having the same disease. I feel like I have gave him the short end of the stick so to say.

mom of loving autistic sons

Hello there I'm the mother of two autistic sons whom are nonverbal their ages are 8 and 5. I think the government should do more to help the disabled young or old. I Am a stay at home mom now but eventually I am going to have to go to work to make ends meet. My children really need me at home but I have no choice its either eat or starve. The only way I feel I would be able to make it is if I was rich I wish thats not my case. My husband works buts its just not enough to support the 8 of us. I beleive if I did have an good paying job I still would rather be there for my boys because they need me 100%. The government does so much for people whom don't want to work and depend on the system. what about the ones whom can't help the fact that they can't work because their trying to take care of their disabled children.

Education for the disabled

In late June of 2006 Salisbury College dropped its Pathways programme for the disabled student! There was to be a closure of this department as we had known it. This department was the only department that received a level 2 on the Colleges first Ofstead two years before! The comments were exceptional in that they were very close to getting a level one! As an example the management received a level 4. We formed a carers group to fight it! sent letters to the local press, MPs, House of Lords etc and still got nowwhere. We beleive that the principle falsified result or hid them from the LSC, who it appears backed the college on its closure due to the report that was made to them also. We are marching to Downing Street on the 29th April to present a petition on its closure. The government has a lot to answere to. It appears now it is happening all over the country and MENCAP are just beggining to realize the extent of the problem. What now do we do?

POST 16 PROVISION

OUR SON IS NOW 16 ABOUT TO LEAVE SPECIAL EDUCATION WITH NO QULIFICATIONS,HE HAS A DIAGNOSIS OF ASD WITH THE SPECTRUM OF COMMUNICATION DIFFICULTIES BUT THIS HAS IMPROVED.HIS IQ IS WITHIN THE AVERAGE TO LOW AVERAGE BAND,SHORT TERM MEMORY PROBLEMS MAKE SCHOOL WORK DIFFICULT.i WAS INTERESTEDTO HEAR OF THE CURRENT MEDICAL TREATMENT YOUR BOYS ARE RECEIVING, WHEN WE HEARD YOU ON RADIO 4 TODAY.I READ YOUR BOOK SOMETIME AGO.WE FEEL THAT THESE KIDS ARE FAILING DUE TO A LACK OF PROVISION AT POST 16 AND MOST OF THE COURSES ARE JUST BABYSITTING SERVICES.
JUDITH AND GUY KENYON.

undiagnosed disabled son of 16 years old

i have a 16 year old son called tariq who doctors have done tests on over the years and have not come up with a solution to what is wrong with my son.i read your book a few years ago and it was just like reading what my life had been like .your two children s symptons just sounded like my sons.i emailed you a few years ago but got no reply.i look forward to hearing from you as i am now at a point where i dont know who to turn to as doctors here in liverpool have given up on my son .thankyou and good luck in the future to all your family and wishing all the best in life for your two sons.bye yasmin.

My special son

I am mummy to Nathan, he is such a beautiful and content little boy it makes my heart leap when I look at him.

I had a healthy pregnancy but when nathan was born the cord was 4 times round his neck and he was a bit 'jittery' after quite a traumatic labour. Doctors thought he was having seizures so 'popped' him onto some phenobarbitone ... this was the start of a very different life than the one i was expecting to live with my little boy.

Nathan had brain scans, lumber punctures, blood tests, EEG's, urine tests you name it, he had it .. NORMAL was the result everytime. Nathan was far from 'normal', he is 2 now and he can not yet hold his head, can't sit, walk, talk, has severe epilepsy, visual impairment, reflux (has recently had a gastrostomy and his stomach tightened).

Recent brain scans have shown progressive damage but with no known cause. Basically my son is going to die, they don't know when or how but can not tell me why. This has left me unable to risk having anymore children as it would not be fair to myself and my husband or another child should this happen again.

My son is so special to me, I never thought I would beable to love and cherish anything as I do him, when he was newborn and I was still in shock and grieveing the baby I hadn't had I didn't think I would be able to love a child that couldn't love me back .. how wrong I was.... I have now got over the grief of not having the child I was expecting and have found the smallest things that my son can do (looking my direction when I ask where's mummy, smiling and babbling) are a huge treat to me and make me smile more than anything ..

Things have not always been easy, I have had many battles to get equipment mainly and have taken to doing all my own research and have had friends do fund raising to help us get equipment and toys to make life easier. The NHS kept offering chairs etc that were totally impractical (bath chairs that sat too high to get in the water!) so i got my own, I didn't like the buggy they offered me, so i found a nicer one and reaslised that it cost less than the one offered, took my son and my evidence along with me and got the one i wanted ... I've almost become an OT, Physiotherapist, speech and language therapist, biochemist, neurologist, carer etc etc in the space of 2 years in order to understand my sons condition and get what we need from the health service.

It is all an uphill battle but after reading Henriettas Dream its good to know that we are not alone and that there are people out there willing to fight our corner and change the way our children are treated, keep fighting and stay strong.

dissabled children are inteligent too

my son is very special.
he was diagnosed with ADHD at the age of 6. Adam has had to over come so many obsticles in his life. one of them being that even though he was hyperactive and had an impossible attention span it was clear that he was very bright.
he was continuly bullied at school and had a lot of prejudis from other parents and teachers.
still at the age of 11 , i decided to put adam in for his 11+. the school didnt recomend him but i had faith in his abilities.
he passed with flying colours and was offered a place at the gramar school.
as soon as they found out that he had ADHD they struggled to come to terms with this and had no proper support in place. he spent 2 years at the school being continusly picked on, repremanded and excluded. by the end of the 2nd year adam had began to give up hope and his grades slipped dramaticly.
due to various reasons, i decided to move out of the area that we were in to a new town. i had decided to put adam into a mainstream school but needed to know that the area was going to be safe for my children. teignmouth was a place that i visited alot due to friends so we moved in july this year. to my horror the local authority could not place adam in a local school as there was no placements.
i was told about a private school in the area that had a learner support unit and a very high standard of education.
as i am on income support i could not aford the high fees but with classes of only 15 and the additional help adam needed, the school offered me 40% off. i receive DLA and attendence allowence which amounts to £410 per month, so i decided to use this for his fees.
well adam is doing amazingly well. his grades have improved from c-d to a-b. the school say that he is very bright and are giving him all the help and support that he needs to progress. they do not treat him like he is stupid or dissabled.
the problem lies with the fact that it is a major stuggle to cope finantialy and if there was help given i would be so greatfull. if not, well adam coming home from school with a smile on his face is more reward than anything else.
with thanks kerry

Dylan (the love of my life)

After attempting to concieve for years we were finally sucessful the day my husband came home from Iraq. I had a difficult pregnancy to say the least, I was pre-eclamptic, gestationally diabetic and I am Rh neg. Dylan was induced at 32 weeks. His heart rate started falling during delivery and was delivered using forceps. He was in NICU at a military hospital. I did not see him for 2 days after birth because I was confined to my bed and he was confined to the NICU. On the 4th day I was able to hold the most adorable baby ever and he did not open his eyes. He had no muscular tone and refused to eat. I was sent home on day 2 and was driving to the hospital every 3 hours to pump breast milk while sitting next to him. The hospital was telling me Saturday he could go home on Saturday. On saturday I showed up for our nine am breast pump date and I was met by an ambulance. He was transfered to UNC Chapel Hill. In Chapel Hill he was diagnosed with a grade 3 Inter ventricular hemorage. Dylan is now 2 and live moves slowly for us. He is not eligable to disability I am not able to work as there are no available special needs day care slots. He vomits at random and has been placed on Neocate (horribly smelling, but expensive and effective formula). It costs us $300/month just for formula costs WIC only covers 4 cans. Yet he is a smiling bubbly little man who loves attention and dogs.

henriettas dream

just finished reading your book, and i understood what you were saying from beginning to end.
Life is not made easy for people with disabilities.
I admire you for standing up for your rights wish more people would do the same

Candace's life


Below is part of a letter that I wrote on behalf of my step-daughter Candace. She came to live with us last year after CPS fiinally intervened. We are a middle income family and it would seem we do not qualify for anyone's criteria. Please read the letter below. I sent out around 250 copies and no one would help.I have stepped into this situation and am appalled by America's lack of concern for profoundly mentally and physically handicapped children and their families. We are under constant finacial strain, we have no support system to speak of, but we are trying our best to keep her home as long as we can.Thank you for listening! Holly see below:




My name is Holly, I have been a proud resident of the state of Nevada since 1981. I am writing on behalf of my fiance, Tony and his 13 year old daughter Candace. Candace was born with Cerebral Palsy and a rare genetic disorder called Angelman’s Syndrome. It is a deletion of the 15th chromosome. She is profoundly mentally and physically handicapped.... Candace is 13 with the mental capacity of a one year old. She wears diapers, requires food and meds through a g-tube three times a day. She cannot be left unattended. She is unable to perform the most basic tasks and requires assistance with all daily living requirements. She cannot follow directions, and is not even capable of yes or no answers. She does not walk or talk. She is like a 95lb baby. Both Tony and I had full time jobs. His parents help out but are getting older and I fear they may be hurt. Candace has the strength of a teenager, she bites, scratches, pulls hair and gouges eyes. That is just when she is being nice. I cannot convey to you the enormous amount of care she requires. Finally in July Tony was awarded temporary sole custody and I quit my job as a table games supervisor, a loss of $47k a year, to help care for her, we were advised in order for her to continue to receive Medicaid and Nevada Mental Health we had to make less money. The strain on our lives has been physically, financially and emotionally tremendous. We are doing these best we can. Since coming to live with us Candace has been healthy and getting stronger every day. The DRC has been very helpful but cannot assist on the Federal level. Because we work we do not qualify for the benefits her mother was able to get. Medicaid pays for the diapers, meds, food and 4 hrs a day of home health care. The bill for these things alone is $4k a month. We have just been told that I may have quit my job for nothing, we still may not qualify because Tony makes $50k a year. Without Medicaid we cannot possibly keep her here, we would have to turn her over to the state and put her in a home. Because of her activity level she would be strapped down constantly, there would be no other children and no affection. We are not looking for a hand out we just desperately need more help than we are receiving. I am hoping for a solution such as emancipation so that she will qualify on her own, or maybe become a ward of the state and we could “foster” her. I don’t know the answers but I am hoping you will help us find a way to keep her. It is imperative that I return to work as we are just barely making ends meet. I cannot for the life of me understand why we would need to be poverty level in order to obtain assistance with such a serious situation. We have not heard from her mother, she is court ordered to pay child support, and if she would clean up she could assist us with child care as we did when she had custody. This is an impossible predicament and every day there are more road blocks.



Sincerely,



Holly Richardson

Jessica & Lee - Before & After

Jessica was my stepdaughter. She died at 2 yrs 5 mths of pneumonia, due to her underlying condition of Emery-Dreifuss muscular dystrophy. We got the diagnosis 6 months prior to her death, and we were told to expect 20-30 years but only 1 child had this condition so they were working in the dark. Her death was totally out of the blue and we still dont know if her death could have been prevented. I still believe if she had had a gastrostomy tube fitted we could have got enough food into her to give her a fighting chance. We cant get the doctors to decide whether her only full sibling has any chance of developing the more common form, which is a constant worry.
After her death we got custody of this sibling + her 4 half siblings. The youngest of these was Lee 15 months older 3 + 8 mths then just 6 now. He was severely delayed, but it was all put down to neglect. He has progressed amazingly but is still far behind my 4 year old. He has ongoing continence issues, speech problems, hypermobile joints, and can destroy anything in less than 5 minutes ( including light fittings). We had him on school action plus in nursery then he moved areas and they refused to transfer his status because they have to start from statutory school age. Then we had a year of 'well if he was toilet trained he wouldn't need any extra help'. He is finally back on school action and will be seeing an E.P. next term. However I want him assessed for a statement as I know that he needs 1 to 1 to achieve. I have to manage this with 8 children under 12, 3 younger than Lee. He is not the only one with problems, all of us struggle at times with our loss and the others were neglected too, but I have to be there for us all. I just want recognition that Lee is going to need help for a long time and I want the different services to be interested, communicating, and available. They need to cut through the red tape and work out what is best for each child as quickly as possible. If they listened to the parents first they might be able to do more.

fighting for housing

basically i have a 4 year old daughter called cara who has RETT SYNDROME. cara cannot do anything for herself and is in a wheelchair. we have 5 steps up to our house and the bedrooms and bathroom are all upstairs. cara shares a room with her older sister erin.we have lots of equiptment for cara and no room to store it. cara is up alot during the night which disturbes everyone else. a house has became avaliable in our area and is perfect for our needs but we have been told that we will just have to wait untill the right house becomes avaliable as there are other people on the housing list as well as us.I have been in contact with all the local authorities, councillors, social services etc but the answer is always the same , wait! ( we have been on the list for 2 years now ).things are getting harder for all of us and no one seems to be taking an interest in our situation. where do we go next?

Brittle bones disease

We are a family of four living in Hackney.
Myself and my daughter Georgie have brittle bones disease, (Osteogenesis Imperfecta). We have been trying to move to a disabled adapted garden property for 7 years. Our council say a 2 bedroom is sufficient even though there is not enough room for my daughter to use her wheelchair and have 2 beds in the room. No one seems to want to help us improve our daughters quality of life.
We recently saved some money to take our daughter on holiday. She broke her leg in Spain and our insurance company took a week to get a flight home. We were stuck in a Spanish hospital with no translator and my daughter had an operation to align the bones. She is now too afraid to walk and has said she will never travel again.
Last month she was in hospital again with a Kidney infection as it takes some time at school for her to be taken to the ground floor toilet, even though she has had a statutory assessment and statement issued after I appealed against the authorities. She has become resigned to beind in a wheelchair and is unhappy. She has lost all her confidence and I cannot find any organisation which can help her.

my special boy

My special little boy was born on xmas day several years ago,and although appearing normal at birth and did well on the apgar test,was diagnosed with
"cerebral atrophy" which is a smll part of the brain which hasn't developed fully.This has caused severe global developement delay&low muscle tone.
Although a very happy and contented little boy, its becoming more and more noticeable just how far behind in his developement he actually is.
He attends a special school ,which is just brilliant!!!!
And he has come on leaps and bounds.
He has physio and o/t at school,where as before it was all done at home.I like many other mums had so many hospital appointments in the first four yrs,( i was there to see 4 different consultants every 10 wks ) they are not so often now.Everything so far has been plainsailing, and i know a lot of parents of
disabled children are not as lucky.
But ive just maybe come accross my first knockback!
I have been turned down for a government grant,which was for us to be able to build a room on the ground floor at the back of the house specifically for my special boy (not a bedroom) but a room where he can be left safely with all his own toys and equipment and be able to play away from the family room so we can get a rest from him.This room would also have all the things that he would need to get him used to touch and sound!I am now at a stand still and do not know wher to go next! if there is anyone out there who can offer me sum advice or can get me on the right track i would be extremely greatfull.x

My child being denied home studies.

I have a son who has Duchane Muscular Dystrophy. He is unable to walk and he needs 24/7 care. My son and myself have been requesting home study for a while now and the school he attends is called Gabriellino High School does not want to give my son home studies. The teacher gives him the same home work every day and they dont teach him to read. He is 15 years old and he is unable to read. Most teenagers his age know how to read already. The aide sends my son to wheelchair himself to the attendance office and take the roll sheet. My son is very weak from his arms and at times he comes complaining to me that his arms hurt and are very sore. I am very upset and I am tired of having my son complain to me about going to school. My son complains that his bottom hurts him all the time from being bound to a wheel chair for a long time. He has a aide but his aide doesnt remove him from the wheelchair onto a desk. He has got boyles on his bottom from sitting on the wheelchair from being on his wheelchair for a extended time. My son is unable to walk and the school does not want to give my son home studies because they want to keep him in school and I think the school has no right to punish my son this way. The other students in my son's class make fun of him because he is on a wheelchair. I hope that some one can help me resolve this situation. My son doesnt have long live. The type of disease my son has gets worse in time and my son only has until age 18 to live.

Special Needs Units

My son, who has been in a Special Unit for the last four years, was watching Breakfast Television when they were reporting on Special Units closing. When it had finished, with no encorougement from me, he said "these councillors their brains have dropped out what would people like me do without these schools?" Then he added after a few seconds "I will have to be a councillor when I get older and put them all back".
I thought this was lovely and so honest especially as it had come straight from a special needs child. Perhaps he should go and give the Dept. of Education some advise.

James aged 11

I have read your book,Henrietta's Dream with such great awe and wonderment. I came across the book whilst in our local library.
I felt that your pages where written about, James, my cousin.My husband and I have recently retired and have more time to spend with James and we have tried to obtain some help and advice regarding his diagnosis and specific treatments he needs.
His main diagnosis is Cerebral Palsy with failure to thrive, hydronephrosis, asthma and gastrostomy fed being added and completing his list.
I am particularlily amased at the connections that Henry and James have in common.James knows everything (like a typical 11 year old!) but he cannot speak. He communicates with his eyes, and "grunts" which are his sole obvious communicating skills. The whole family know how difficult it is to make us understand what he wants to "say".
I feel that there parts of his brain that are dormant, like Henry's. It is my greatest wish that the "locks" can be removed or undone.
You mention in the book that magnesium and antibiotics can help to help the brain become more receptive. You even likened it to Altzimers in adults.
James faces utter frustration both day and night. He even "soils" his bedroom walls, as Henry did.
Please help James and all who love him to "unlock" the constraints which bind us all.
May I thank you for allowing me the pleasure of reading your book and learning all about your wonderful boys, Henry and Freddie.

understanding

I have just read the book henriettas dream, and although I myself am not a parent i have spent five years working with children and young adults with complex special needs, I have found the system and guidelines to which I was forced to work to be inadequte and not centred on the people requiring, or receiving the care.

During these five years I became the manager of a care home specialising in helping to encourage independence in adults with special needs for a very prominent charity, only to leave under a black cloud 5 months later after voicing my opinions on the quality of care provided, and the utter outrage i felt when this "non profit making" charity were closing homes if they did not produce a certain amount of profit for the company within a specific time limit.

I strongly believe that any individual with a special need whatever the reason should be given all the help they can and I continue to fight "from the inside" to ensure I do all I can to see that happen.

Fight for Ryan

Ryan is now 11years old, he was diagnosed at 2 and a half with autism and severe learning difficulties at St Thomas's in London by Dr Gillian Baird.
Before his diagnosis we had to wait months for referrals although we believed something was not right, this was the start of our up hill struggle.
Ar 18 months Ryan failed his 18month check (which was actually carried out at 22 months! He was referred to a clinical psychologist who referred him to a community paediatrician for whom there was another 6months wait. I was not happy and contacted the local paediatrician asking for his help he arranged to meet us immediatley. He said he thought Ryan had autism but as this was such a huge diagnosis to give he wanted a second opinion and referred us to Dr Gillian Baird at St Thomas's.
He was diagnosed and several areas of special agencies were informed about Ryan and we would receive appointments in due time......
Ryan attended a special needs playgroup for a six week assessment where he would be seen by O/T's Speech Therapists, physio's (as he had lax ligaments)
everyone you could think of was involved .
After the 6 week asessment he was offered 1 morning a week permanent and then offered another later on.
Ryan was statemented after lots of reports and information was provided. However we wnated ryan to stay at the childrens centre where he was for his schooling but there was a closer provision that said they could cater for his needs. It meant that we would have had to go to tribunal and in the early days were quite naive and didnt know what to expect . If I could have got Ryan to the school he could probably have had a space, however I had another son who I needed transport to school every day i could not physically do it!
It turned out thaty Ryan has been happy at his school and has made a bit of progress probably more than I couls ever have imagined.
As well as dealing with Ryan's condition and everything that it throws at you we have had many years of fighting the local council for planning permission as ryan has the largest room in our terraced house which is also padded because of the noise level ( we had one very caring neighbour!!! that came knocking on our door saying that we were being unfair and that Ryan isn't sick he can run around and why isn't he drugged!! This kind nurse!! from our local hospital moved house because of ryan.)
In 1999 i became pregnant (not planned but once there was not going to abort!) we needed more space so applied for planning permission to be turned down several times after press coverage , local Mp's and lots opf 'heated ' telephone conversation planning permission was given. We now have our extra room .
Everything we are told we are entitled to for Ryan we have had to fight for. The list is never ending:
Disability Living Allowance - came back at the lowest rate - asked for a review and it came back at the highest rate, others may not feel like fighting!
Disabled Bay - turned down several times - eventually involved local councillors and we now have our bay - which is a god send when others do not park in it, as we live directly opposite a physiotherapy unit we have lots of elderly people parking in it!!!
Funding for padding - social services told us we would qualify - a local charity funded it.
Disabled Facilites Grant - after 2 years of fighting won battle but spent 5 years paying back part of the cost.
Direct payments what a nightmare we are still going through the process which we started 2 years ago! Still not received a penny to pay 'sitters' We are not prepared to put our son in residentail respite so thought this would be the ideal solution, so far this has caused us no end of stress and frustration and many many tears.

We are at present in the process of looking at schools for my son at seconndary level - we have requested the school where my son first atended
i feel we are going to have a battle because of the demands I have made, because of his severity and lack of awareness of danger and sudden changes in mood i have requested that he go in a taxi with a one to one escort to and from school. i live in hope that we do not have to fight this battle but something in my blood that tells me different, Ryan's case was going to panel in October 2004 we still haven't heard anything (I have tried phoning can't get person concerned) but hey, the saying goes 'No news is good news'!


I would like to add that have just finished reading Henriettas Dream and can say that I can relate to many of your feelings,your dreams of normal family life shattered , wondering what will happen when you are not around( i very often have these thoughts when Igo to bed and fall asleep crying. When I can no longer physically cope, although my son is physically agilehe is unable to dress, feed (properly) toilet himself, he is at times a danger to himself and safety is of utmost importance to us, he has a buggy when out and walking down to the town with him holding his hand is not something we do in order to keep him safe, when he was younger he managed to get out of the front door and just ran into the road, luckily it was a sunday and not a lot of traffic.
I do sometimes envy other familes with normal children that are not restricted ( you'll know what I mean' ) but i also feel honoured that I have learnt so much about disabilites and found happiness watching other children less fortunate achieving things,watching their little faces light up when they have acheived . I believe that before having my so I was probably ignorant to all these little things I truly eel honoured to part of 'our community ' caring for those that need us .

My last note is ' We can cope with all that our son throws at us but it is the so called caring agencies , who say they are here to help that cause us so much stress'

my two boys

my two lovely boys scott 9 dylan 4 scott has aspergers syndrome and dylan is autistic and has behaviour problems .i have just read your book henriettas dream and it made me cry .i to have constant battles with the statementing process.and battles all the time to get anything done.i honestlt believe i was chosen to look after these two wonderfull boys .

Problems In Getting Help With My Daughter

I read your book with great interest. I could relate to some of the things you went through. My daughter is now an adult aged 32 years, she has a learning disability and behaviour problems. Although her problemas are no where near as great as your own two children, her problem went undiagnosed and help was non existant. As an adult her problems got worse as work placements were unsuitable or downright exploitation. She got into financial difficulties which nobody would speak to us about (as she was an adult in her own right)until she got in deep, then they wanted us to step in. This story is just a snippet of our life with our daughter, but I agree that things need to be changed. I wish you well and look foward to book two, to find out what happened to your two children and youselves. Julia

My Son

My 5 year old son has cerebral palsy and although we got the school we wanted, getting equipment became horrendous. We had a nightmare getting seating for him to relax in - we had a small tumbleform seat that he grew out of so we requested the next size but were sent a large and he promptly fell out of the side! We sent it back and then heard nothing. We then waited so long for it that he grew into the large seat but as we turned it down before we had to buy it ourselves. Luckily the local fire brigade were diamonds and raised the money needed.
We are currently in dispute about his wheelchair because they gave us a frame that had no suspension. This frame meant I had to hold my son’s head over bumps or he would end up with angry red lumps on his head! We have just got rid of an old silver cross buggy we were using as he has simply grown out of it. There was no replacement for us so we had to find other means. Thankfully we know a lady who also has a quadriplegic child and sold us her three wheeler all terrain buggy for £50 which we had to force her to accept. My son loves it and so do I - although he has a sheepskin in it as he is a bit titchy without it!

I have to say the home support is awful. I spent two and a half years being a single mum to a child who was increasingly difficult to look after, then I married a man who never helped, all the while living in an upstairs maisonette with the smallest bathroom! I was too proud to ask my mum for help as being such a young mum I didn’t want anyone to see that I couldn’t cope. It resulted in me falling into the most awful depression, losing our house and moving in with my mum. I left my husband and had to tell my mum just how awful I was feeling.
The result is that my son now lives with my parents and I feel so incredibly guilty about this even though we are both happier. I feel bad that when I was blatantly refused help I didn’t have the courage to stand up and ask for it. My son stays with me and my wonderful new partner at weekends which is a joy to us both and I am back in full time work, which gave me part of myself back that I had lost in the fog of depression. I hope to one day be able to have my son full time and will be strong enough to fight for my child who I feel I have let down immensely.
Thank you for giving me inspiration and the chance to tell my story.

A 21-year struggle

My story starts when I was 12 years old. I was a overweight child and I had started to lose my ‘puppy fat’ as my doctor put it. In fact it was the start of a problem that is still affecting me today. I started to lose weight rapidly, even though I ate like a horse, and when I was about 14 all my lymph nodes started to swell up. By the time I was 17 they were extremely profound all over my body and especially my ears which were painful as I had to wear glasses. I was also getting severe joint pain and I was getting sick of having to go back and forth to the doctor and getting fobbed off with "it's just growing pains" etc.

It got so bad I was admitted to hospital on Boxing Day, six months before I was to sit my A-levels as I couldn't move my hip and I was in hospital in traction for two weeks. I was discharged from hospital just before my mock A-levels which I completely fluffed as my mind just wasn't on the job. I sat my A-levels and did well enough to scrape through into a University to study Chemistry. I settled into university and my problems didn't go away but I tolerated them and got on with my studies

Halfway though my 2nd year my troubled flared up and I went to the University health practice and was told by the practice head to "stop wasting his time and run off and enjoy myself". In the end I was sent away untreated and I had to sit my finals in the health centre the following year as I was so unwell. But I managed to get a good degree and I was lucky enough to get onto a PhD course at the same university.

Three months into my second year winter came early with severe frosts and snowfall. I had a massive attack and I was unable to move - the cleaner in the hall of residence ordered me to go to the University GP. A different GP saw me and immediately sent me to the hospital for blood tests and a X-Ray. I was told that I had ankylosing spondylitus (a form of arthritis) and that three of my vertebrae had fused together. I was given an emergency appointment to see the rheumatologist at the local hospital (16 weeks as it was so near Christmas). This was three days before my 23rd Birthday.

Just before Christmas I was told that if I left my course the University could get another grant for another student and suggested I go as they didn’t think I would finish. I had to fight tooth and nail to stay in the course and was even threatened with disciplinary action from the University.

Four months later I started to have a terrible pain in my eyes and I couldn't see properly. I had iritis which is when my immune system attacks my eye as can happen with ankylosing spondylitus sufferers. In the end I finished my PhD and I received it in 1997. I had been working hard at keeping my disease in check and had managed to get a job temping in a laboratory for a major water company and I was then taken on by them full-time. I had fully disclosed my problems to them straight off and they didn't see a problem with my condition.

For a few years everything was ok. I married, we moved to Stevenage and bought a house but in 2001 everything started to go horribly wrong. My feet started to swell up uncontrollably and after one very bad night I had to go to A&E as I couldn't walk. After the usual 4 hour wait I was told by a junior doctor that they couldn't do anything and was told to go home. A month later I saw my rheumatologist and was told that I had rheumatoid arthritis in my hands and feet and was put on immune suppressants and had cortisone injection info my foot to bring the swelling down.

In 2002 things then really got bad. I first fell down the stairs and snapped my finger and then when I went back to work I had a heart attack two weeks later. After having a load of tests it was discovered I have a rare syndrome that means that the main artery in the shoulder keeps getting blocked which upsets the blood flow in my body.

My wife had managed to cope with all this until February 2003 when I started to have epileptic fits. At this point things started to be too much for her and she had to be signed off sick with stress for two months.

I had to be pensioned off from work in the end and my income has obviously dropped. Getting any help from adult care services is a joke. We had two banisters put in to stop me falling down the stairs and they are about to raise the step by the front door so I can get in and out the house. But there are a lot of other things they can't do as we own our house and we must find the money to do them ourselves. This is hard as my wife is the main breadwinner now and all the money that comes in goes straight back out again.

I am now 33 and I seem to have been mucked about most of my life by one group of people or another, whether it doctors who can't be bothered or the council who are quick to take my council tax but slow in giving me anything back in return. My epilepsy seems to be stress triggered so most of the time I cannot seem to be bothered as I don't want to trigger a fit. I have had enough of the system and I feel let down by successive governments with their complete lack of understanding.

A letter written to the Prime Minister in May 2004:

Miss [name removed] was put into care on 28 July 2003 it has taken ten months to compile this comprehensive letter of complaint. Not just because of the amount of information it contains, but also because of the emotional state the whole affair has left myself and my wife in. After having to coping with not just the health problems associated with a disabled child, but also of having to constantly battling with local authorities, social services, both of which are organisations supposedly set up in order to protect, and help people in our situation.

Goring-on-Thames, Oxon: In the summer of July 1996 my wife [name removed] was heavily pregnant, we were expecting our first born, just like any normal couple we had all our plans laid out before us, [name removed] had decided to return to work after the birth.

The birth: The birth went smoothly and all was well, except for a small problem with her feet that were bent upwards. A paediatric consultant looked at her feet and said this was fairly common and was caused by the baby developing in an awkward position in the womb this could easily be sorted out by bracing the feet, as the bones were still very soft and this would quickly correct the problem but they would do some blood tests just to be on the safe side.
You can’t imagine the shock and horror it caused the both of us, when they called us back some two and a half months later, after they had cultured the blood in a laboratory and tested it for genetic disorders, “ I’m sorry to tell you [name removed] you daughter has been born with a rare genetic disorder called Trisomy 4p and will severely affect her development”.
That day we drove home from the hospital in total silence. Nothing in the world could have prepared us for the shocking news that had been bestowed upon us, or the horrific ordeal that lay ahead.

Appointments: Appointments started coming in thick and fast, as they wanted to test every part of [name removed] anatomy. [Name removed] quickly realised she would be unable to return to work as planned, and this forced financial issues on us as well. As we now had only one wage, and were not entitled to any benefits as I earned too much to claim income support.

With Christmas was looming, [name removed] employer had clawed back any maternity pay she had received, and to top it all, it looked like we would lose the flat we lived in. By now both of us were on Prozac and looking extremely stressed. When the final blow was struck, my employer was unsympathetic to our situation and denied me time off work. The problem was they didn’t believe me, as my daughter had been born in September and now it’s December, “ and you’re telling us she’s got what? ”. So according to [name removed], because I didn’t go into work, I had terminated my employment with them. I had only been with the company a few months and they wouldn’t go back on any decision they made, as it looked like I might be a bit of a liability by now, as the stress was beginning to show.

Highworth, Wilts: Luckily for us my uncle stepped in and gave us somewhere to live, renting a room from him, paid for by the benefits system, as we were both unemployed and broke.
This was received by the local authority rather frostily, as, “you said you were from where?”, “Goring-on-Thames”, we said, “ oh I say” they said.
This was where we met social worker [name removed] , who her self struggled to grasp the situation she found us in. But quickly got to work in sorting things out for us, and we found [name removed] to be very helpful.
Unfortunately the stress of the situation had begun to affect my uncle and he promptly kicked us out.

Homeless Hostel: We were then, dumped by the Swindon borough council in Underwood House, with all the drug addicts, single mums and families who couldn’t speak a word of English this was all to much for us and not the environment we needed to bring up a severely disabled child. Nor did it cater for myself and my wife who were by now, extremely ill and mentally exhausted, I myself had been signed with depression by my G.P.
During our stay at Underwood House [name removed] had to endure, two three-hour operations on her feet and ankles, in an effort to correct the deformities. We were constantly back and forth from the hospital with her, and had no transport or any money to pay even bus fairs, as income support doesn’t stretch that far. So we were forced to walk some six miles or so back and forth on many an occasions. It was either that or queue for hours with all the drunks, drug addicts and a handful of genuine people, in order to get a crisis loan, that’s if you qualify after hours of form filling and waiting for a decision.

Systems: for a system that is designed to put off people who are exploiting it, it actually does a good job of putting of people who are genuine. Instead actively encourages the social dropouts to turn up ever day, and get their money without any form filling or waiting, as they are incapable.
Until you’ve been subjected to this type of injustice and victimisation, it’s impossible to convey the distress it caused us both. All we got was, “that’s the system I’m afraid, if you don’t like it write to your M.P”.
If only we could have at the time we would have. But we were almost paralysed by the situation we were in and felt hopeless.
Luckily I managed to get a job at [name removed] , so we had some money coming in now and eventually were housed by the local Authority. Finally after thirteen months of waiting, having seen countless other families housed before us, yet another injustice and discrimination we had faced.

Blandford Court: We were housed in [name removed] , Swindon, we were told by the local authority, we had to take what they were offering, as they were obliged by law to offer us nothing else, so reluctantly we moved in.
I can only describe [name removed] as the worst place I’ve lived in my life, with drug addicts, drunks, social drop outs and once again a few genuine people as well, who also suffered the intolerances just as we did. We were spat on from the flats above, had eggs thrown at our car, and abuse shouted at us because our daughter was different to look at. Also the man from the flat above deliberately cut through his overflow pipe on his toilet system and let water run down the outside wall. This caused damp and mould to grow in our flat. After nearly a year of complaints to the council, they finally gained entry and fixed the problem.

But it was all too late, as lot of the damage had already been done and [name removed] health suffered tremendously. As a result of the damp conditions we lived in and also the additional stress it had put on us, in turn affected Georgia as well.
[name removed] had been struggling with repeated infections, chest mainly due to the damp conditions, and then developed a severe case of eczema. It became so severe she was hospitalised on several occasions and nearly died from septicaemia, as her body’s immune system was unable to cope.
Once again we were pushed to our limits and unable to get any further forward. But eventually after months of trying we managed to get on the [name removed] Housing Scheme and were able to purchase the property we currently live in, by way of a shared ownership.

Gorsehill, Wilts: We moved in to [name removed] Swindon, in July 2000 it was a good time and we thought the worst was behind us. But how wrong we were. Things soon changed for the worst, when we found that [name removed] School transport had been cut, due to the local authorities attempts to save money It seemed that Mr [name removed] from Swindon county council had decided, in his wisdom to exclude anyone transport who lived within a two mile radius of the school. We lived 1.9 miles (approx) from the school and as I pointed out to [name removed] , it may seem a small thing and even petty, but when you are disabled you rely on it totally. This meant my wife had to make four trips a day on foot as she can’t drive, and we couldn’t afford the cost of taxies, in all weathers come rain or shine and peak rush hour traffic, when pollution was at its worst.
Even though all this was backed up by medical reports from her G.P, suggesting it would be detrimental to [name removed] health, the bus continued to past the end of our road unable to stop. The council and Mr [name removed] would not budge on the issue, and once again [name removed] health suffered as a result. Repeated respiratory problems made worse by the heavy traffic fumes.

It takes a brave and noble man to make cuts that affect people’s privileges, it takes a coward to make cuts that affect peoples basic needs.

Luckily For [name removed] : Luckily [name removed] only had to suffer this for about a year, as she was transferred to [name removed] school, which was further away, so she had her transport re-instated.
[name removed] was an excellent school and catered for [name removed] needs very well. However by this time her health had deteriorated quite a lot and she continually fought infection after infection, and was on antibiotic’s almost every day of her life for a period of two years (approx), and she had probably not completed a full month at school during this time.

We Needed More Support: we needed more support, as [name removed] was becoming a real hand full and we were both finding it a real strain. Unable to get any more respite care, as the local authority have over two hundred disabled children on their books and their respite care centre can only cater for up to twelve children at a time, that’s if they are fully staffed. So we were allocated (after a year of debating), three nights per month. Not always together and not always on a weekend, as you can imagine this was not a great help, as what we needed was a break of one week a month, not three separate days.
Once again it was our health that was suffering, depression and stress had set in and our G.Ps were at a lose end as to how to help. Other than offering antidepressants, there was nothing more they could do.

A Worrying Time: This was a very worry time again for us, as they now classified her state of health as critical as her immune system slowly began to fail her, this now being a life threatening condition, they proposed short stays at [name removed] House in Oxford. This it is a hospice that offers children care, from on site doctors and nurses twenty-four hours a day, seven days a week. [name removed] did stay there on one occasion for a week, but we knew this was only a stop gap and offered no long term solution to helping us at home.
There were also other problems, which had caught up with us by this time, these were financial.

So We Called In: so we called in the child health team from Swindon Borough council, they came round compiled a list of everything we needed in order to help us. They even agreed we needed more respite care in order to maintain some sort of normal life under the circumstances, as they could see we were under some considerable strain. Also they suggested as [name removed] had had two falls carrying [name removed] down the stairs, we should look at down stairs accommodation built on the back of our property. Comprising of, bed /day room & bath room, they felt this was what[name removed] needed, as she had by now become very destructive, smearing faeces on the furniture, destroying plants, furniture, the television and any thing else she could. Basically we had lost our own space and were subjected to a constant daily clean up operation, we needed this very much and were very excited about the possibilities ahead. But when they came back to us and told us we would have to wait nearly two years our hearts sank again, as our hopes of some help and support were once again dashed. They could not even offer us any more respite care, so basically they were no help at all. They could not offer anymore money for us to live on either. We explained we now live in a two wage society and one wage and a carers allowance of £172.00 pm and as plus [name removed] D.L.A payments of £320 pm, does not work. The child health teem also, so rightly pointed out to me, it cost’s three times the amount to bring up a disabled child as a normal child.

Despair and Utter Disbelief: Not only did they agree with our situation, but were also willing to send me a copy of a report, to support those claims. It clearly states that disabled families need more funding. I couldn’t believe that they supported our claims, yet were unable to help.
All they could say was “right a letter to your local M.P and get him to take up the matter for you, we can only implement the system that exists”.

No Way Out: Feeling totally destroyed by the whole experience by now, it was imperative we find a solution fast. Unable to write a letter to our M.P, as we were now feeling over come with hopelessness and despair. We then asked to put [name removed] into foster care. We new this was drastic, but it would buy us the time we needed in order to sort things out. The whole experience was really bad, but has given us a much needed break and time to reflect.
It took time to find [name removed] my wife a job, but she has managed it despite the adjustments she has had to make. Also we needed to find our other daughter a child minder to fit round our shifts. But we’ve managed it and have to pay £340 pm for the privilege. Just like all the other tax incentives this Government has launched, we earn too much to qualify for it.
However there are still financial issues looming as we are still left with debt totalling £26,000, that is what it has cost me to keep my wife at home for the last seven years, in order to care for our severely disabled child.
So you can imagine, to find out that Swindon council paid £20,000 to Gloucestershire council, in order to safe guard a placement for [name removed] in their, foster care associates organisation, which is based in [name removed] , Gloucestershire and they pay the foster carers on average up to £250.00 per week.
This was yet another knife into an already deep wound. Was there no justice in this land?
How could they pay somebody else more money to look after our child?
Why do they not consider we the parents need the same financial support they offer foster carers?

This can’t be right, and is tantamount to victimisation and discrimination of the very worst kind.

To The MPs Of This Land: To the MPs of this land, this is a disgrace and an out rage we’ve been treated in this way. Nothing could take away the pain and suffering we have been subjected to, by a system that is supposedly designed to help people in our situation.
I could quite easily write a list of proposals, however I await your reply and hopefully a quick resolution to this appalling situation we’ve been left in.

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