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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
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.
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..........................
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.
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.
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.
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!
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.
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 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.
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
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
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
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
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.
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.
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
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.
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
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.
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.
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.
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.
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?
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.
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.
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.
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
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.
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
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 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.
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?
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 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
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.
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.
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.
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.
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 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 .
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 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.
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.
Miss [name removed] was put into care on 28 July 2003 it has taken ten months to compile this comprehensive letter of complaint. Not just because of the amount of information it contains, but also because of the emotional state the whole affair has left myself and my wife in. After having to coping with not just the health problems associated with a disabled child, but also of having to constantly battling with local authorities, social services, both of which are organisations supposedly set up in order to protect, and help people in our situation.
Goring-on-Thames, Oxon: In the summer of July 1996 my wife [name removed] was heavily pregnant, we were expecting our first born, just like any normal couple we had all our plans laid out before us, [name removed] had decided to return to work after the birth.
The birth: The birth went smoothly and all was well, except for a small problem with her feet that were bent upwards. A paediatric consultant looked at her feet and said this was fairly common and was caused by the baby developing in an awkward position in the womb this could easily be sorted out by bracing the feet, as the bones were still very soft and this would quickly correct the problem but they would do some blood tests just to be on the safe side.
You can’t imagine the shock and horror it caused the both of us, when they called us back some two and a half months later, after they had cultured the blood in a laboratory and tested it for genetic disorders, “ I’m sorry to tell you [name removed] you daughter has been born with a rare genetic disorder called Trisomy 4p and will severely affect her development”.
That day we drove home from the hospital in total silence. Nothing in the world could have prepared us for the shocking news that had been bestowed upon us, or the horrific ordeal that lay ahead.
Appointments: Appointments started coming in thick and fast, as they wanted to test every part of [name removed] anatomy. [Name removed] quickly realised she would be unable to return to work as planned, and this forced financial issues on us as well. As we now had only one wage, and were not entitled to any benefits as I earned too much to claim income support.
With Christmas was looming, [name removed] employer had clawed back any maternity pay she had received, and to top it all, it looked like we would lose the flat we lived in. By now both of us were on Prozac and looking extremely stressed. When the final blow was struck, my employer was unsympathetic to our situation and denied me time off work. The problem was they didn’t believe me, as my daughter had been born in September and now it’s December, “ and you’re telling us she’s got what? ”. So according to [name removed], because I didn’t go into work, I had terminated my employment with them. I had only been with the company a few months and they wouldn’t go back on any decision they made, as it looked like I might be a bit of a liability by now, as the stress was beginning to show.
Highworth, Wilts: Luckily for us my uncle stepped in and gave us somewhere to live, renting a room from him, paid for by the benefits system, as we were both unemployed and broke.
This was received by the local authority rather frostily, as, “you said you were from where?”, “Goring-on-Thames”, we said, “ oh I say” they said.
This was where we met social worker [name removed] , who her self struggled to grasp the situation she found us in. But quickly got to work in sorting things out for us, and we found [name removed] to be very helpful.
Unfortunately the stress of the situation had begun to affect my uncle and he promptly kicked us out.
Homeless Hostel: We were then, dumped by the Swindon borough council in Underwood House, with all the drug addicts, single mums and families who couldn’t speak a word of English this was all to much for us and not the environment we needed to bring up a severely disabled child. Nor did it cater for myself and my wife who were by now, extremely ill and mentally exhausted, I myself had been signed with depression by my G.P.
During our stay at Underwood House [name removed] had to endure, two three-hour operations on her feet and ankles, in an effort to correct the deformities. We were constantly back and forth from the hospital with her, and had no transport or any money to pay even bus fairs, as income support doesn’t stretch that far. So we were forced to walk some six miles or so back and forth on many an occasions. It was either that or queue for hours with all the drunks, drug addicts and a handful of genuine people, in order to get a crisis loan, that’s if you qualify after hours of form filling and waiting for a decision.
Systems: for a system that is designed to put off people who are exploiting it, it actually does a good job of putting of people who are genuine. Instead actively encourages the social dropouts to turn up ever day, and get their money without any form filling or waiting, as they are incapable.
Until you’ve been subjected to this type of injustice and victimisation, it’s impossible to convey the distress it caused us both. All we got was, “that’s the system I’m afraid, if you don’t like it write to your M.P”.
If only we could have at the time we would have. But we were almost paralysed by the situation we were in and felt hopeless.
Luckily I managed to get a job at [name removed] , so we had some money coming in now and eventually were housed by the local Authority. Finally after thirteen months of waiting, having seen countless other families housed before us, yet another injustice and discrimination we had faced.
Blandford Court: We were housed in [name removed] , Swindon, we were told by the local authority, we had to take what they were offering, as they were obliged by law to offer us nothing else, so reluctantly we moved in.
I can only describe [name removed] as the worst place I’ve lived in my life, with drug addicts, drunks, social drop outs and once again a few genuine people as well, who also suffered the intolerances just as we did. We were spat on from the flats above, had eggs thrown at our car, and abuse shouted at us because our daughter was different to look at. Also the man from the flat above deliberately cut through his overflow pipe on his toilet system and let water run down the outside wall. This caused damp and mould to grow in our flat. After nearly a year of complaints to the council, they finally gained entry and fixed the problem.
But it was all too late, as lot of the damage had already been done and [name removed] health suffered tremendously. As a result of the damp conditions we lived in and also the additional stress it had put on us, in turn affected Georgia as well.
[name removed] had been struggling with repeated infections, chest mainly due to the damp conditions, and then developed a severe case of eczema. It became so severe she was hospitalised on several occasions and nearly died from septicaemia, as her body’s immune system was unable to cope.
Once again we were pushed to our limits and unable to get any further forward. But eventually after months of trying we managed to get on the [name removed] Housing Scheme and were able to purchase the property we currently live in, by way of a shared ownership.
Gorsehill, Wilts: We moved in to [name removed] Swindon, in July 2000 it was a good time and we thought the worst was behind us. But how wrong we were. Things soon changed for the worst, when we found that [name removed] School transport had been cut, due to the local authorities attempts to save money It seemed that Mr [name removed] from Swindon county council had decided, in his wisdom to exclude anyone transport who lived within a two mile radius of the school. We lived 1.9 miles (approx) from the school and as I pointed out to [name removed] , it may seem a small thing and even petty, but when you are disabled you rely on it totally. This meant my wife had to make four trips a day on foot as she can’t drive, and we couldn’t afford the cost of taxies, in all weathers come rain or shine and peak rush hour traffic, when pollution was at its worst.
Even though all this was backed up by medical reports from her G.P, suggesting it would be detrimental to [name removed] health, the bus continued to past the end of our road unable to stop. The council and Mr [name removed] would not budge on the issue, and once again [name removed] health suffered as a result. Repeated respiratory problems made worse by the heavy traffic fumes.
It takes a brave and noble man to make cuts that affect people’s privileges, it takes a coward to make cuts that affect peoples basic needs.
Luckily For [name removed] : Luckily [name removed] only had to suffer this for about a year, as she was transferred to [name removed] school, which was further away, so she had her transport re-instated.
[name removed] was an excellent school and catered for [name removed] needs very well. However by this time her health had deteriorated quite a lot and she continually fought infection after infection, and was on antibiotic’s almost every day of her life for a period of two years (approx), and she had probably not completed a full month at school during this time.
We Needed More Support: we needed more support, as [name removed] was becoming a real hand full and we were both finding it a real strain. Unable to get any more respite care, as the local authority have over two hundred disabled children on their books and their respite care centre can only cater for up to twelve children at a time, that’s if they are fully staffed. So we were allocated (after a year of debating), three nights per month. Not always together and not always on a weekend, as you can imagine this was not a great help, as what we needed was a break of one week a month, not three separate days.
Once again it was our health that was suffering, depression and stress had set in and our G.Ps were at a lose end as to how to help. Other than offering antidepressants, there was nothing more they could do.
A Worrying Time: This was a very worry time again for us, as they now classified her state of health as critical as her immune system slowly began to fail her, this now being a life threatening condition, they proposed short stays at [name removed] House in Oxford. This it is a hospice that offers children care, from on site doctors and nurses twenty-four hours a day, seven days a week. [name removed] did stay there on one occasion for a week, but we knew this was only a stop gap and offered no long term solution to helping us at home.
There were also other problems, which had caught up with us by this time, these were financial.
So We Called In: so we called in the child health team from Swindon Borough council, they came round compiled a list of everything we needed in order to help us. They even agreed we needed more respite care in order to maintain some sort of normal life under the circumstances, as they could see we were under some considerable strain. Also they suggested as [name removed] had had two falls carrying [name removed] down the stairs, we should look at down stairs accommodation built on the back of our property. Comprising of, bed /day room & bath room, they felt this was what[name removed] needed, as she had by now become very destructive, smearing faeces on the furniture, destroying plants, furniture, the television and any thing else she could. Basically we had lost our own space and were subjected to a constant daily clean up operation, we needed this very much and were very excited about the possibilities ahead. But when they came back to us and told us we would have to wait nearly two years our hearts sank again, as our hopes of some help and support were once again dashed. They could not even offer us any more respite care, so basically they were no help at all. They could not offer anymore money for us to live on either. We explained we now live in a two wage society and one wage and a carers allowance of £172.00 pm and as plus [name removed] D.L.A payments of £320 pm, does not work. The child health teem also, so rightly pointed out to me, it cost’s three times the amount to bring up a disabled child as a normal child.
Despair and Utter Disbelief: Not only did they agree with our situation, but were also willing to send me a copy of a report, to support those claims. It clearly states that disabled families need more funding. I couldn’t believe that they supported our claims, yet were unable to help.
All they could say was “right a letter to your local M.P and get him to take up the matter for you, we can only implement the system that exists”.
No Way Out: Feeling totally destroyed by the whole experience by now, it was imperative we find a solution fast. Unable to write a letter to our M.P, as we were now feeling over come with hopelessness and despair. We then asked to put [name removed] into foster care. We new this was drastic, but it would buy us the time we needed in order to sort things out. The whole experience was really bad, but has given us a much needed break and time to reflect.
It took time to find [name removed] my wife a job, but she has managed it despite the adjustments she has had to make. Also we needed to find our other daughter a child minder to fit round our shifts. But we’ve managed it and have to pay £340 pm for the privilege. Just like all the other tax incentives this Government has launched, we earn too much to qualify for it.
However there are still financial issues looming as we are still left with debt totalling £26,000, that is what it has cost me to keep my wife at home for the last seven years, in order to care for our severely disabled child.
So you can imagine, to find out that Swindon council paid £20,000 to Gloucestershire council, in order to safe guard a placement for [name removed] in their, foster care associates organisation, which is based in [name removed] , Gloucestershire and they pay the foster carers on average up to £250.00 per week.
This was yet another knife into an already deep wound. Was there no justice in this land?
How could they pay somebody else more money to look after our child?
Why do they not consider we the parents need the same financial support they offer foster carers?
This can’t be right, and is tantamount to victimisation and discrimination of the very worst kind.
To The MPs Of This Land: To the MPs of this land, this is a disgrace and an out rage we’ve been treated in this way. Nothing could take away the pain and suffering we have been subjected to, by a system that is supposedly designed to help people in our situation.
I could quite easily write a list of proposals, however I await your reply and hopefully a quick resolution to this appalling situation we’ve been left in.
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