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

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:

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.

Henrietta's Dream provides space for the stories families want to tell.
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