Welcome to our new ResBlog on caring for a child/young person with a disability.  Please tell us your young stories.

We have been asked to conduct this research by one of our members who would like to find out a bit more about your thoughts and experiences which will enable them to create an offering tailored to the needs of people who care for children or young people with disabilities. The blog deals with the issues surrounding the availability of suitable pateints care and patients Health support in our communities for families with special needs children.

These issues could relate to nursery needs, after school care, training for carers and schools, financial support and counselling.
We would like to obtain your views on what challenges are faced by families who have disabled children/young people? These could be physical, emotional, and social.

• What support do parents, siblings, extended families feel they need at different stages?
• Can you share with us some examples either of support received when caring for a child/young person? Or indeed lack of support that was expected.
• Would an organization/support centre help (or could have helped) you or people you know caring for a disabled child/young person?
• Do you think health care professionals, carers, teachers etc should receive training and/or support in specific areas of care and counselling?
Thanks very much in advance for your help. Please feel free to check back on the blog to see what others have said and perhaps contribute further thoughts.
To contribute all you need to do is type a nickname of your choice and then put your comments into the box. Your comments are anonymous of course!


It would be great if you could mention in which part of the country you live so we can get a feel for any regional issues.
I look forward to reading your comments and, of course, thanks very much for your help.
Best wishes
Belinda
PS Please fell free to share this blog with anyone who you think might find it of interest.

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Belinda | 14/05/2007 11:28:00

Thanks for dropping in. I look forward to reading your comments

Steve | 14/05/2007 11:58:00

Apart from the excellent work of the Diabetic Clinic and nurses at our local hospital, we have had no help whatsoever. My son is diabetic and needs to 'snack' whenever he feels 'low', but recently had his snack taken from him in school by a teacher, who proceeded to humiliate him by sharing it around the classroom. This was despite letters to the school informing them of his illness and that he wished it not to become common knowledge amongst his classmates.

Angela Cullum | 14/05/2007 12:07:00

Unfortunately our situation is different as I am the disabled person and my children, in effect have to help me instead of the other way around.

Kaz | 14/05/2007 12:11:00

As a parent of a son with learning difficulties, I find that with the closure of many special schools it means my son will be leaving school this year with very little in the way of qualifications. Although he has had a statement for all of his time at school it has taken until the last 6 months remaining that they have thought that one to one tuition may help. (TOO LATE). His understanding of what a friend is, means he is lead astray and gets into trouble but no one want's to listen and understand.

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HEATHER ATTA | 14/05/2007 12:37:00

Everything is a worry and commands superhuman effort. From dealing with an autists difficulty in understanding the world and what I find even sadder, the public in general assuming that looking 'normal' means they cannot possibly be disabled. Expectations from everyone from relatives to special needs teachers for an autistic child to somehow turn off their autism and behave and understand in the way they wish!

claire2703 | 14/05/2007 13:29:00

I am disabled and my eldest son aged 11 is fantastic but when I asked for help with my daughter now 3 I was told I would have to put my children on the at risk register before I could get any help. This is very wrong. It was having my daughter that made me disabled but my children are in NO danger.

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Tracey | 14/05/2007 13:34:00

I have the same problem as Heather as my son has Aspergers, and I am careful where I take him as I get comments. He is at a faith school, and after battling for 3 years for recognition of his condition and obtaining a statement, the school is now very good overall at attending to his needs. The teacher who asked the difference between my son and a naughty child and enraged me, actually treated him with empathy and compassion.

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Marion | 14/05/2007 13:36:00

My daughter is profoundly deaf and has a cochlear implant.She shall be starting main stream school next term.During her nursey years I have tried to get a one-to-one assistant for her but because of lack of funds via the school it has not been possible. A friends son who attended a smaller nursery at another school received assistance although he had no disability just a mild social behavior problem. I feel my daughter has missed out in valuable input and help to get her ready for school.She has had an occupational therapy assesment which said she would benefit from input from OT but because of waiting lists and staff shortages this is still to be started. It is so frustrating that the time speeds by and nothing is done. There are so many meetings held to discuss things by those sitting in offices when what is needed is action on the shop floor.

susan | 14/05/2007 14:26:00

my son has dyspraxia, the major problems are getting the disability diagnosed, and treatment to help is not always available, or proffessionals don't know enough about it. You have a constant battle for help, schooling and others think the person does not appear disabled.

christine | 14/05/2007 14:35:00

my daughter has williams syndrome and learning difficulties, she is now 34. I got no help or advice at all when she was growing up as there was nothing like there is today. My daughter went to special schools. but I was not told what was wrong with her until she was 15. She left school and went to a day centre. which was great for her. Now she goes to meetings and represent disabled people in the area . Disability forums and Disability parliament meeting. She may not be able to read and write, but she can voice her conserns.I just hope she can make a differnce in her own way and for everyone else out there. I'm very proud of her in every way. Contact your local council to see if there is meetings in your area, and get your voice heard too.

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philip hamer | 14/05/2007 17:21:00

I am also in the situation as Angela speeks about i the aboth blog,, My son how is now 15 has been in the position of looking after me for quite a few years now, as i have been in and out of a mental health hospital s menny times over the years, I have recoverd well enough now To see the great strain ithat is put on the family, and espesily the children I now also , see it has took its tole, on his scooll work and his social life, having a farther with mental health problems , puts stigme on the children espeshialy if it gets around theare scooll, This he resantly he exsplaind to me, wich i never realy realised, And wish theare would have been moor suport for children with a perent or family member, In a situation with a perent poorly, As thease children aer in fact un-sung carers in a lot of the situations, and under great presure,at times, And desurve to be recognised and helped moor, thank you

Mr Coupland | 14/05/2007 17:33:00

The problem is that there is nothing for disabled children to do after school and if there is they have to travel out of the area, its about time the local authorities and the government catered for our disabled children, i guess if we where all immigrants then we could cry racism then perhaps something would get done but being BRITISH we and our disabled children get put on the back burner as usual, i only hope that the ministers and local politicians end up having a disabled child then see how they like it, but then again they have the tax payers money to pay for what their disabled child would need wouldn't they?

helen | 14/05/2007 18:12:00

My grand-daghter went to a special school for her probelms, bur it did nothing to educate her and now she is grown up she is like a lost soul. reads beutifully but she very insular. If we intergrated more children into the "normal" education system, and had teachers that could teach not do lots of paperwork bring into education teachers aides in classes that will stop children such as my grand-daughter slipping through the net.

Val Barcroft | 14/05/2007 18:56:00

It is so sad that our so called 'modern society' hasn't changed that much in the last 20 years. We as parents of children with special needs have to fight constantly for our children and families. My daughter is 17 and has severe physical disabilities.Everything has been an effort both education and social services have been a nightmare. I can only say to other parents dont despair fight for what you believe, dont give up!

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Jim Lakin | 14/05/2007 21:32:00

Fully agree with Val. as parents we have to fight constantly for our children, fight against the system which is based upon global assumptions and blanket solutions which are not tailored to the individual needs. Despite legislation there still remains a significant culture problem with mindsets. as parents we have to express our daughters thoughts through our words. The therapists are exceptional people but they have to work within financial budgets and like us are very rarely consulted by the decision makers. Very often we are not made aware of what is available as someone has decided it is not appropriate or can not tell us as there is no funding available. research project follows research project and pilot scheme follows pilot scheme without any tangible improvement. These children are exceptional children with ordinary demands confonted by unexceptable barriers. It is time for a change, time for a real change.

swindon-nicki | 14/05/2007 21:40:00

The best thing that has happened for us in recent years is " DIRECT PAYMENTS" from social services. Instead of being offered the services that social services are able to offer, ( which rarely suited us) we receive a monthly payment which entitles me to employ my own staff. This means i chose who works for me, when they work and what they are expected to do. see: http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10016128 for more details. My youngest sonis 7 and has a life threatening metabolic disorder, with global delay and other unassociated problems. The problem i have at the moment is Government lesislation relating to him having medication at school. Something which is ongoing at the moment and i am fighting!! I have always made it up at home and his T.A's give it to him at the required time. Now i am not allowed to do that i MUST make it in front of them or they can not administer it. Or i can teach them how to prepare it and allow them to take charge ( which to be fair i am not ready to do.) I am also enquiring to see if there is any funding available for out of school sporting activites, which i think would help him no end. Again this is proving very difficult.

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Linda | 14/05/2007 21:54:00

Our daughter has had Rheumatoid Arthritis since she was 2 yrs old she is now 19 we found that the education system for her was quite good, but we had to keep on top of it our local special needs school with a hyrdotherapy pool closed this was vital for her mobility there are not enough hydrotherapy pools and all main stream teachers need lessons in special needs. I had to write countless letters to her secondary school continually explaining her disability.

Sara Meredith | 15/05/2007 09:26:00

Having a disabled child is hard work to use an understatement. What makes it worse is the constant battling we have to face to get our children what they need. Continous phone calls chasing equipment, reports. I feel the whole attitudes from proffessionals are budget minded, they have to protect their budget so this means that neccessary equipment goes either unfunded or you have to self-fund. I am fed up of asking relatives for money for christmas presents so that i can buy my daughter the equipment she needs. Thankfully in my area we have direct payments, which to my family and I have been lifesavers. It has given us the chance to employ people we know have the right experience to care for our daughter. The quality of respite is awlful and to be truthful by the time you have accessed it you will have most propably reached breaking point. It is time that people realised that we dont ask for these services because we want to, its because we need to. Our children deserve the quality of life others take for granted.As parents we also need the right equipment and support to allow us to enjoy our children.

Lyndsey | 15/05/2007 09:36:00

Both of my children have problems. My 12 year old was born deaf and has cochlear implant and also has very poor eye sight. She has also suffered liver deases for the last year and is on steroids, which make her fat. She's been though hell, having her hearing aids and glasses snatched and flushed down the loo and teased for her weight problem. Although the school have done everything they can, there is no LSA to help her in the classroom, and out of school the family have no support or social benefits whatsoever. My 9 year old has arthritis and was born with a deformed leg. She has recently had surgery on her leg and was in a spiker for six weeks. A nine year old in plaster from the chest down isn't funny! The GP refused to repeat her prescription for the arthritis until she'd had a blood test, but I couldn't get her to the surgery as she was bed bound. The district nurse wouldn't come out because they don't do children under 16. The GP also said it wasn't an emgergency so refused to come out. So my daughter went with out her medication causing her pain and stress. Although she is now out of plaster and in a brace and using a wheelchair she still hasn't had the blood test because the doctors surgery isn't disababled friendly and I cannot get her in there. The GP has failed her completely and left hr with no medication for 9 weeks now. They moan about shops not having disabled access but the GP seems to be getting away with it.And there's no one to turn to for help. The school have a problem with toileting her as she cannot manage on her own, so I have had to give up my job and be a permanent mums help in the school (un paid) incase she needs a wee. I have been told because her condition is tempory I can't claim benefits. But the only thing thats tempory is the recovry from the operation, which we don't even know if it's worked yet. This has put a huge strain on the family, emotionaly physically and financialy.

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Tina | 15/05/2007 09:49:00

My daughter was diagnosed as type 1diabetic at 1.5 years old. She is now 11. Every year I go to her school and give a presentation to the full teaching staff, kitchen staff, TA's and lunchtime assistants so they are aware of her condition and make sure she eats her snacks and the correct type of lunch. I have even managed to get the local diabetic nurse to attend as well, which was a bonus and well worth doing.

Elizabeth | 15/05/2007 09:52:00

I am in similar situation to Heather and Tracey as i have a son with aspergers. At the moment he is holed up in hisd bedroon refusing school. This is because he says he is being bullied. have yet to ascertain this because his perception of things is very different. Have to say that at the moment the school are being very supportive but what I want right now is for him to actually be in school!!!! Life's bloody tough isn't it? i admit to being at the end of my tehter. he is very abusive both verbally and hiting out at me and attacking me in his tempers..

Neil | 15/05/2007 11:28:00

We have a 7 year old daughter with autism and severe learning difficulties, and an 11 year old with Aspergers. Everything which has helped them we have had to do ourselves - learning about biomedical approaches including the gluten and casein free diet, taking our elder daughter out of a chaotic state school classroom to a small private school where she can concentrate, taking our younger daughter out of a special school where she was basically just kept quiet to educate her at home where we have taught her to read (she reads at high speed, above age level), type, etc. We also use direct payments as the social service / carers provided were unreliable and not attuned to her needs. AND in order to get the few things which do eventually make life easier (disabled car badge, carer's / disability allowance) you always have to jump through hoops and fill in endless forms, appeal etc etc. The system seems geared to do as little as possible unless you have the time to push again and again for what you are entitled to.

Sue Fisher | 15/05/2007 11:34:00

My 5 year old son has spinal muscular atrophy type II. He can't walk or stand, yet despite purchasing a radar key in order to be able to access "disabled" toilets for him we still face problems. There are NO child sized disabled toilets and in many disabled toilets there isn't even a bench to allow me to dress and undress him so that he can use the toilet. I have to balance him across my knees whilst sitting on the toilet myself and struggle to adjust his clothes, or take a blanket and lie him on the floor. The toilet seat is normally too large too and I have to carry a child size seat insert with me. Many other parents of disabled children have told me they share my experience and some have even resorted to using disposable nappies whilst out. While I agree this may work for some, I also feel it is degrading for a disabled child who has become toilet trained, to be rebabyfied simply because of a lack of suitable facilites.

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sandy | 15/05/2007 12:19:00

I have 2 disabled children, both are wheelchair bound. They have a recessive genetic disorder which is undiagnosed. Both have decreaed muscle tone. My daughter is 15yrs old and is 110kg due to her medical condition. She has complex needs. My son is 10yrs old and is 40kg. Ive been in the uk on a work permit for the last 5yrs and although the kids are now in school we do not get any support or help because od my immigration status, so to the gentleman out there who is british and does not get what's due to him, i'm sorry to hear that, but not all of us immigrants abuse the system. I have not claimed or asked for anything that i am not entitled to have and at present i'm awaiting my application for indefinite leave to remain. As a healthcare professional myself, the system has failed me twice over. My daughter have problems with incontinence and severe bladder infections which do not get treated unless she is symptomatic. We live in a 2 bedroom flat that is in appropriate for our kids because of their needs but it is all we can afford at present. My kids have not been able to socialise outside school, because there aren't anyclubs or activities available to them. We get invites from different organisations but how does anyone get your child there without appropriate tranport. My husband and i have become social reluses because our children have nobody else and nowwhere else to go to. When the equipment breaks it takes a whole week or more to repair or replace, not forgettting being able to contact the right people. My daughters obesity has created whole new travelling problems and requires special transport- we are therefore unable to take her on public transport. It is emotionally, physically and financially stressfull but we do it for our children. I work night shift so that i can take care of my kids during the day and my husband takes care of them when i'm at work. Our time together as a family is very limited.

Julie | 15/05/2007 12:38:00

I have two now late teenage chilldren - my daughter now at University has severe dyslexia. Her primary schools reaction to her lack of ability to learn to read, write or do arithmetic was to tell us that it was because she was one of the youngest in the class and she would catch up. We had her tested and her dyslexia confirmed, a friend kindly paid for private secondary education in an excellen school which caters for a small number of dyslexics in a ordinary school environment each year. This generousity and her determination has got her where she is today. Support is better in tertiery education but she still received back work with comments about sentence structure and spelling rather than any sibject contents, and the english being the reason for a fail, she is studying psycology?? My 16 year old son has cystic fibrosis. His health care has been excellent thus far through his life but again his education has suffered due to lack of understanding. Primary school were great, but high school seemed to regard him as a nuicence. His health was not good through his teenage years, and had to have 8 weeks off just before GCSE's We asked for help, gudance and work during this period and was given very little. Just his mock papers would have helped so we could have picked up weaknesses. Having been predicted B's and C's we had a lovely set of D's which he is now having to address at college. Hwe also suffered from bulying becasue he has to take tablets before food, and sometimes needs the toilet 'now'. Both of my children look 'normal' as has been commented on by others. The perception of 'disabled' is someone in a wheelchair, as signified by the sign for disabled. There needs to be better education of the general public. We are also supposted to be 'perfect' in this world, we need to teach that not only are we all different colours but we are all also 'differently abled' in all sorts of ways.

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annette | 15/05/2007 12:51:00

i have two children with disabilities.1 has A.D.H.D and the other one has A.D.H.D Aspergers and O.C.D. the only help ive ever had with any of them is D.L.A. my son with the three things also has learning difficulties at school but ive been banging my head at a brick wall all im told is there are worse kids than him even though he has some difficulties not enough for extra help.he never goes anywhere apart from school so hes with us 24/7.I do wish there was more help for children and parents it says in Neils blog above that hes got a disabled blue badge ive tried and was told because i dont get the higher rate of D.L.A im not entitled because they can both walk

Gibby Keys | 15/05/2007 14:01:00

I could write a book on this topic but I'll try and focus on 3 issues - enabling children with chronic illness to become responsible for their own care, supporting young people with Asperger's socially and financial support with travel/other costs to hospital appointments. Our son Tom is 16. He has Asperger's and has chronic uveitis and secondary glaucoma. Tom has become to take more responsibility for his medical care as he has grown - for example, he organises blood tests, goes to the surgery on his own, orders repeat prescriptions etc. We have had to teach him how to do all of these things - because he has a communication disorder some of these tasks are difficult for him yet he must learn to do them if he wants to have an independent adult life. It would have helped Tom if some support and training had been available from the GP surgery or the hospital. Support for young people with chronic conditions is woefully inadequate in this country - most of our support re uveitis has come from an American website attached to a Boston clinic. Tom has little social life. This means he is sometimes lonely and we are concerned that he is not receiving enough stimulation. Apart from school he is with us 24/7 - respite in some form or another would be welcome. Over the last 5 years we have had to forego holidays etc to pay for the cost of travel expenses - we live in Northumberland and Tom's specialist was based in London. This meant organising childcare and staying overnight in London. At one point we sold the piano to fund such a trip. We were not entitled to help because my husband and I both work but with five children all in full time education this has put a huge financial burden on us. We have no doubt that Tom would be blind today if we had not made those trips but it has been very hard financially. Little things like fuel and parking soon mount up over the years. It is hard enough for the other children as it is without being told that they have to forego new school shoes or give up music lessons because the money simply isn't there. Of course they would give up all they can to help their brother but they should never have been asked to. Entitlements are empowering; we struggle often to ensure that we have not all become victims of Tom's disabilities. Tom is not disabled and neither are his family but the society we are living in tries its best to make sure he is and we are. So thank you for the opportunity to explain some of the issues we are faced with. I hope some joined up thinking outs some strategies in place.

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barbara | 15/05/2007 17:15:00

my grandson cameron was born with serious heart condition.at the age of 8 he was put at a sudden death risk and diagnosed with even more including ventricular tachycardia at the age of 13 he was given an implanted defibulator.we have had to fight for a lifeline alarm .we have never had any support from anyone.nothing is offered .respite care etc they say social services is there for the vunerable in our society not from our expierience

CARLA COLLINS | 15/05/2007 17:20:00

My son has hearing problems due to glue ear resulting in a perferated eardrum, speech problems, learning difficulties, A.D.H.D and Autistic Spectrum Disorder. He is 8 years old and been statemented for a year. When i phoned social services for information on activity clubs suitable they asked what i wanted...when i said i didnt really know what was available, basically a group he could go to to meet other children with similar disabilities and socialize with, they said they needed a name of a group and couldnt give me a list incase i choose all the available help !!!!! i then asked for some sort of carer so i could go shopping once a month or to appointments and was told i didnt qualify as my son wasnt at risk....so for a parent of a disabled child to have time out to rest do they need to abuse their child to get help !!!

Karin Rigden | 15/05/2007 18:19:00

My daughter who is now 17 had a throat infection in March 2004 which turned into ME. She spent 12 months in a wheelchair and still occasionally has problems with mobility and tiredness. This illness is still not recognised enough and we had to fight for a disabled badge. Even now she still has her off days. Her consultant, doctor and specialist nurse were great but other health professionals just did not understand. This was very distressing for the whole family. My only consolation is that my daughter is getting better and now I am a nurse and will hopefully help others if I come into contact with them

ellen | 15/05/2007 20:23:00

I have three children two of which have problems. my Eldest has got erythropoietic protoporphyria (allergy to the sun) i have had no help at all from any services for her. my youngest has difficulties and has had loads of assesments that keep telling me different things. The specialists have said he had dyspraxia and then autism and then aspergers. no one can tell me for certain what he has. he has now been referred to genetics hopefully someone one day will be able to tell me what is wrong!!

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Ruth Hastie | 15/05/2007 20:34:00

My son has Aspergers Sndrome and ADHD. Last week he saw the psychiatrist at CAMHS, he doesn't want to take pills to control his condition and I feel it has to be his choice. He doesn't want therapy. He is 11 but not ready yet to open up completely on how he feels about his condition. Basically the result of last weeks appointment was that he was discharged from the service. In the next 6 months if we want any advice we can phone CAMHS direct and get an appointment, after that it has to be via a GP referral which, according to the psychiatrist, would only take 2 weeks. I have been at the end of consultants time estimates before now so know to take that with a pinch of salt. Apparently CAMHS remit is to no longer simply review children's progress or offer any form of support to the parents. Had my son or I agreed to dose him up with ritalin or whatever other smarties that are currently being peddled then he'd have got another appointment but nope. Was also told a few times that chances are that my son will go off the rails and blame me for not making him take the ritalin or whatever, but in the same breath told that ritalin wasn't appropriate as this would make him more depressed than he already was. Mind you he only scored 19 on the depression scale and the pass mark is 20 so anti depressants weren't an option. I am not against drugs per se but my son is 11 and I can't force him to take drugs, I can only advise but now I have to advise without back up. I am lucky as I know my way round the internet and know the various support groups but other parents must feel utterly lost.

lorraine 15/05/07 | 15/05/2007 21:01:00

i would just like to say that my daughter has cronic kidney failer she is 15 going on 16 this year the past year has been hard for us but they now have her stable she is not on dialisys yet but she ison a lot of tablets to keep her right she has been of school a lot this past year she is now doing her exams i have found that the doctors have been really good to us plus her renel nurse has been great she comes down to the house and tells us how sarah my daughter has been progresing actully its her blood preassure that is the biggest problem at the moment as its searisly high and she is in danger of having a stroke or heart attack so we are quite worryed about that she is already getting 3 blood preassure tablets at the momentanyway we pray that they will get it under control soon

Linda | 15/05/2007 21:05:00

My daughter, who is now 17 has severe learing difficulties and complex epilepsy, now thankfully controlled and behaviour problems. Although things are better now that she is older, when she was younger it was a nightmare. We could'nt seem to get any help at all from anywhere. All the clubs were based in the city, which we could'nt access because it was out of our area. After being moved from school to school, that said they couldn't cope with her, she finally moved to a school that could and they have worked miracles with her. They run a after school club where, once a week she stays for tea along with other pupils and they do fun things. They also return her home on the school mini bus. We also now have access to a after school club run by the disability team at our local social services department. This runs every other week. Lucky you i hear people say. Well it hasn't always been this way. We have had to fight for everything we have. When she is 18 next year it will all stop. She has to be refered to the adult services. Easier said than done. My social worker tells me that she has put her name forward to recieve this service but has had no reply despite countless emails. Luckily my daughter can stay at her school until she is 19, from there she can access a college, but these college courses are only for 2, 3 or 4 days a week. What does she do for the rest of the week? I go to work so it would not be practical for her to be at home, she cannot be left alone. So a day centre was sugested to me. Fine, if only we could get some feedback from the adult services. Appart from the clubs that my daughter attends there is nothing for children with special needs in this area at all. There are a few children in this area with special needs, surely if the government provided money for these children someone could get a club started, like a youth club that these children could access on evenings and weekends. We as parents would love to get away for a break on our own, go knows parents of children with special needs need to have break. Can you get respite? Not without paying about £400 a week and no transport included you can't. Unless anyone knows different, please let me know if anyone knows of anywhere that does. Our local social services has said that they do not know of any where and if i find out to let them know so they can tell others. I thought they were suposed to help us not the other way round. I tried not to make this too long so that people would read it but i think i failed. I have had to fight countless battles and have lots of arguments on my daughters behalf for her to get anything that i would leave no room for others if i spoke of them all. It's about time the government put in some funding for these children and their parents.

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adam stone | 15/05/2007 23:31:00

I have a 5 year old daughter with CP, Hearing and Visual impairment, epilepsy and global developmental delays. My experience in the world of disability has been mixed, having met many wonderful , suportive and caring people, both health care and educational professionals and friends. However from the moment of diagnosis it feels like you have to fight for every thing, shout louder and argue every point to improve your childs and your families lives. In our experience the education and health services are very hit and miss often our children are treated as second class citizens and not given the opportunity to reach their potential. We and many friends fund raise annually to give our daughter essential physio sessions that should be available to all that need it on the NHS. The crazy thing is that long term such therepy could save NHS money compared to costs for operations due to muscle problems. My daughter is in a SILC attached to a main stream school she requires far more therapy, Physio , OT etc than she is given and her sensory issues are barely considered. Funding cuts are an annual threat and there is no alternative provision as special schools are closing in our area. Surely it is about what is best for our children that matters and not what is best for balancing the books.

Tom Sant I.T. Tutor (73) | 16/05/2007 09:52:00

I taught, unpaid, children and adults, for three years, who were classed as special needs, also some with brain damage through accidents, etc. I was 60 when this took place and only stopped because Social Services stopped the courses. The biggest thing that was noticed was how quickly they advanced using a computer. Not only did it give them confidence, but because you are not sitting in their faces in a one to one situation, it means you are not invading their space. An invasion of space,for anyone, is very off-putting and can obstruct the gaining of confidence. One gentleman after two years was actually compilling and altering web pages for web sites. I found it to be three years of satisfaction and pleasure when you see the faces of people that wish to learn and enjoy the learning.

Debbi Robertson | 16/05/2007 10:17:00

We run a support and information website for parents and carers of children with special needs (www.extra-special-parents.org) as well as having a child with autistic sepctrum disorder and a child with imperforate anus ourselves. We have found that very few health professionals actually listen to the parents, their views and worries are completely disregarded. A parent (in most cases the mother) knows their child better than any medical professional and knows when something is not right with their child. I also have to echo the point others have made - that we have to fight for everything, whether its DLA, support in school, equipment, therapy etc. My daughters claim for DLA was initially declined - I had to appeal, which was also rejected and finally had to go to an appeal tribunal to finally be awarded middle rate care. In the notes that the DLA provided for the tribunal a GP in their own medical services implied that I had lied about the number of times my daughter needed to be changed in a day. It was only as a result of my daughters consultant writing a letter to the appeals tribunal that I was believed.

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claire f | 16/05/2007 11:19:00

my 3 yr old son has hemiplegia due to having a stroke in the womb he has mild learning difficulties and a speech + language delay,we get middle rate care and high rate mobility and i also get carers allowance so financially for joes care we are ok,the health professionals dont seem to do enough although contact a family are great and when they do day trips older siblings can come along too but i think they should do more local groups for children with any disability as its great for the parents to get to know other parents who have children with disabilities,joe has ongoing physio and his own occupational therapist whom he sees regulary at his nursery but i do think they should see him more but they are very busy working at many different special needs schools,there just doesnt seem enough professionals who can help children with physical difficulties as there are so many children who need help but not enough staff at the clinics..

amanda | 16/05/2007 13:47:00

my daugter is registered blind she was born with no vision but at the age of three gained slight vision in her right eye we had help from the word go but have had to fight the education system to enable my daughter to be intergrated into the education system instead of where they would of preffered her to go which was to a boarding school at the age of 4 for the blind. I succeded in my fight and she is now nineteen years old and is a t university doing a degree in social work she does have help but the amount of paperwork that we have to fill in is diabolical.

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Malcolm | 16/05/2007 14:29:00

My stepson, who had Duchenne muscular dystrophy, and his mother, had no help untill he was 13 yrs of age I phoned up Social Services and was given the name of a service called Crossroads. They organised helpers to help darren out of bed in the mornings and into bed in the evenings. They helped to place him on his commode and to take him off. I cannot speak highly enough of them.

Jayne | 16/05/2007 17:32:00

My son was diagnoised autistic at the age of 4.5years old,it was hard work at the beginning,but even though I live in a "surposed" poor borough of london, I couldnt have asked for more help from the special needs team that he has,he started going to a just new special needs school 6 years ago,I was a week overdue with my daughter and worried sick that he was going to hate it, he was collected on the coach with his lovely escort and bought back to me happy as a sand boy at the end of the day and we havent looked back, all the things they said he wouldnt do like just reading or writing he can do both and at a good standard,he learnt to swim there and is very good at it,we could nt have wished for more, we get respite care usually once a month when my parents or my in-laws take him and his sister for the weekend and thats our time to unwind and recoup ready for the next month,Adam is 12 now and I couldnt imagine him anyother way,he is going through the "hormonal" bit at the moment but thats fine,just goes to show that under all the problems there is still my son doing normal things

gill | 16/05/2007 17:41:00

I agree with lots of the comments on here about having to fight for what you want for your children who are disabled, I like many others on here have a disabled child she has physical and mental disablities and went to a special school, because I used to live 30 miles away from the nearest special needs school suitable for her and at that time they didnt supply transport to this school daily they wanted to send her to a nearer school for children who had been excluded from other schools for bad behaviour, I fought this tooth and nail and in the end I won, so they laid on a taxi for her every day to take her and bring her home, after a year they were using a mini bus and transporting 12 other children froim my direct vicinity,so the need was there but it had to be fought for.I also think that the education standard is quite poor and my daughter doesn't know things that as we as parent take for granted they would learn at school, such as when the second world war was fought,and who is prime minister of the country, I feel that it is wrong we have to fight so hard for the help we need,when we already fight so hard to keep our child healthy and safe, I too went through the majority of my carer years with no extra help from the outside and feel there should be some back up somewhere for carers wether young or old to go to, that should be a right or even a neccesity, if we put our chidren into the states care, it would cost them hundreds of thoudands of pounds to get people to do the work we do, caring for our children,Dont get me wrong I love my Daughter to bits, but help and advice would sometimes be a great help to carers when they have no where else to turn.

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Jean | 16/05/2007 17:56:00

My Son has mild cerebal palsy down his left side. For years we have been told he has a weakness, thta he just needs to exercise regurlarly. Cerebal Palsy is permanent, I am fed up of being told lies. For all those years we could have helped our son more productively. We now have to try and help him the best way we can. He is "too clever" for the system to "statement" him for help, yet he is not progressing in most of his subjects at school. He needs more help and support. Small things like tying his shoelaces are too difficult to co-ordinate his hands and fingers to do. I would appreciate some help or advice if anyone knows what else I can do. Thanks.

Tracey | 16/05/2007 18:00:00

Hi Jean, have you looked into the MOVE program for your son? Regards, Tracey

Tracey | 16/05/2007 18:01:00

I have worked for the past 18 years caring for people who are disabled and I feel strongly that there is not enough time and energy put into providing a good transition process from children's services into adult services. Too frequently people with profound and multiple disabilities are 'dumped' on the door of an adult service with little or no transition. Also the services available to adults is a very poor cousin to children's services. SALT's, OT's and Physio's are over subscribed and in some services (especially for those with physical disabilities) they are non-existent.

Angela | 16/05/2007 20:40:00

My son has Asperger's, it was a fight to get him diagnosed. He has a statement and his school have listened to me so is generally ok. But life with him can be very stressful for all the family. He sees a psychologist but not much else.

dorothy | 16/05/2007 21:40:00

hi i have a disability and my husband and family look after me they do a fantastic job and i am very grateful to them.i would be lost without them and not be able to look or cope on my own.

lorna | 17/05/2007 09:20:00

i have a 4 year son with ASD i am now having the biggers fight for him so far as i live on an island he is a bright boy but i have no school for him after the summer, my own health is now suffering because of the stress that i am under, i am greatfull for the help that i have been given in the past but the thought og eduction setting him up for a fall is wrong i do hope nobody else has to suffer like this

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Tricia | 17/05/2007 09:34:00

My 3 year old daughter has a couple of disabilitles and has been given every form of help she needs from my local authority considering i live in the porrest borough in London. I have a son who is now 11. He also suffers the stess and strains of having a disabled person in the house. I also class him as part carer of Josephine my daughter has he helps me alot. As i recieve alot of help wiuth my stresses and strains via the helpers that deal with my daughter i'm ashamed to say that there are no facilities to help my son along to help him cope with all the stresses that come along with living with a disabled person theres only so much i can do alone. Would be nice if there were places available for siblings who live with someone with a disability to be able to meet others in the same situation.

sue | 17/05/2007 09:56:00

I have both a 15 year old son with adhd and dyslexia and also a husband with diabetes. My son has been statemented from junior school, but has struggled to settle in a school environment hence bunking all the time. He is now at last going to alternative education doing construction which is what he wants to do but this has been after a 3 year battle of meeting with the lea, school and education worker. He now attends making tracks which is run by college tutors and he can attend college a year earlier to get some qualification at the end of his schooling years. Dont just sit back and take what schools say and keep on at them all the time it does pay of eventually and at least he can a have a clean c.v when looking for work and not have it on record he wsa expelled. Dig your heals in and stick to your guns. My husband has been a diabetic for over 20 years and has now started to effect his sight so he constantly ahs laser treatment and opereations to avoid him going blind but other than he gets no help from anyone. He cant either get life/critical illness insurance without it costing the earth so there is no help for me if anything happens to him and the mortgage has to still get paid. There should be more companies out there that deal with diasbilities cos not all illnessses are caused through his diabetes.

Julia | 17/05/2007 11:25:00

I am Disabled myself & my Daughter who is 13yrs looks after me is is also Croinic Asthmatic herself she has had to put up with my illness for anumber of years since she was 3yrs old not seeing her mummy from time to time because of hospital stays also my perants have had to play a big part in my life now my mum herself is disabled & can't look after my daughter sometimes we are just on own because my dad has to look after my mum himself in his late 70's with athritic problems & cronic ashmatic himself we have other family but they don't help one bit i have a bother & a sister with no help with my perants @ all or myself so thanks to my Daughter & Dad for being there for my mum & myself and thanks mum to for playing your part when we needed you most in the early years when you could help

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Donna | 17/05/2007 13:05:00

I have two children with autism and am exhausted by the continuous battles that have to be fought.Parents of disabled children are under enormous pressure daily but to try to ensure appropriate education and disability benefits entitlements means another battle .Not easy when you are caring 24/7 with no support or respite

Tony | 17/05/2007 16:42:00

The main problems other than respite is knowing that the transition arrangements to Adult services are extremely poor in most areas.

Amanda | 17/05/2007 19:17:00

I have 2 children with specail needs a 19 year old with severe dyslexia and ocd who has to struggle the whole time and has very little help. We have paid twice to have him assessed and once to have treatment as his school refused to believe there was anything wrong and labled him as lazy and stupid. My daughter is 13 she has cerebral palsy, epilepsy hydrocephalus, visual impairment, speech and language disorder, learning difficulties and has just been diagnosed as autistic. She has the obvious behavioural problems, when she was very young we had plenty of help and indeed she even attended specail nursery. Once she attended school the help dwindled away. Although she had a TA we had no help at home. We have never had respite and have been through 3 childminders all of which we had to find without help. She moved to specail school at the end of year 4 and allthough we had help with her schooling we had no other help until this year when the school gave us a key worker. All specailist equipment from school age on has had to be self funded and all research into her conditions and treatment available I have had to search for. Despite being under the care of 4 hospitalss there is still little support at home and information is limited.

John Orr | 17/05/2007 20:29:00

I am the diabetic in my family. It will be my children that will have to look after me when I am no longer able to. This is not a problem in the short term it will be down the road abit wit luck. My wife has just gone through a DVT and is recieving treetment for the same. They think she has a rare for of LUPUS.

Mandy H, Swindon | 17/05/2007 20:32:00

I have a 5yr old son with Downs Syndrome, we were very lucky to have great support in the begining, but now he is at mainstrem school, Portage has stopped, he is too old to attend the SEN playgroup, so I feel as if we have been left at the doorstep of the school. We are very lucky in Swindon to have a good DS group with parents who have vast knowledge and who provide speech therapy, its just that without the guidence of professionals I often wonder if the school and home are doing the right thing. I also can not find a holiday club whom I feel safe with as I work 3 days a week. Other children could say if they were unhappy or if other children were being unkind my son wouldnt be able to commuicate that to us.

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joanne hayes | 17/05/2007 20:45:00

My daughter has cp and all though it turned our world upside down the treatment we get from esp in waltham forest is brill,the only thing is they dont warn you about the ups and downs with emotion,and how it effects all the family,from the day my daughter was dianoised we have had help,every week,even help with us getting a bigger place and with the little things also,but it does effect the my son also with every day things and also the schools need more training thanks jo

Kate | 17/05/2007 23:17:00

I live in Swindon and I think that our services are moving towards being excellent. We have a childrens centre opening by the beginning of September which will be sited along side the special needs services of Swindon for children making it a one stop shop.

margaret darlow | 17/05/2007 23:31:00

When my son was 3 years old he was diagnosed with Acute Lymphoblastic Leukaemia. We also had twin daughters, one year old and had to juggle treatment, hospital stays (of which there were many when his blood count was low or he had an infection), my husbands job and time off, child care, bill paying and the guilt. Everything revolved around my son. The hospital and staff were great and we were allowed to stay overnight. Things were explained thoroughly, even though it was hard to take it all in. We were given advice on claiming expenses when attending hospital appointments and given telephone numbers of contact groups if we wanted to talk with parents going through the same situation. My son was eventually statemented after I campaigned for it getting medical evidence from doctors, consultants and hospitals which helped a little with his schooling. My son still attends hospital check-ups and has needed a few opeations due to some side effects from his chemotherapy and radiation treatment. Thankfully he is now 17 years old and at college. However We still feel guilty about our daughters as they were passed from gran to gran and several aunties when my son needed hospitalisation. Counselling was offered for him and his siblings just after his bone marrow treatment, but not for the parents.

Hayley | 18/05/2007 07:14:00

My situation is so much like Neil's. 10 year old with Aspergers and 7 year old with Autism. We too took our eldest out of state school and put him to a very small private school so he could concentrate. The LEA still refuse to statement him as the school are coping well enough. They fail to see that it is only because he is in a class of 3. My youngest attends a state special school that frankly is not much more than a holding cell. She doesn't really get an education, it just gives me time out. She cannot read or write and the school are not really working on this. They try to teach life skills but it seems everything she has learnt has been at home (eg. toilet training - half term holiday). It's almost as though they're resigned to the fact that these kids are never going to learn anything so nothing acedemic is ever strived for. We've had a few courses for behaviour management and makaton sign language but most of the time we get put on a waiting list and by the time our turn comes we've figured out the problem for ourselves (2 years on a waiting list for severe behaviour problems). I have been considering home educating my youngest for a while but I fear that I would be so out of my depth and the thought of having her around 24/7 with no break sends chills down my spine. We too have gone gluten free with the youngest and have noticed a massive difference in her behaviour, but ther is no financial help whatsoever and this food is really expensive. People with Coeliacs can get gluten free food on prescription but we can't. I do worry about the kids, especially what will happen when we're not around anymore. The way my youngest is going she will never be independent, although this is something that we are really trying to ensure happens. If she does ever get her own place I think she will need to be very close to us. One way or another she will be with us for the rest of our lives. Scarey thought when I had her at 19. That's an awful long time.

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megachef198 | 18/05/2007 07:54:00

My son has autism, and when diagnosed, we were given a bunch of leaflets and told "off yo go". Wewere trying to cope with this huge bombshell so did not contact many of the organisations(socialservices, carers first,etc). When we wanted something later down the line, we did not know where to ask and have more or less been left to get on withcaring for him with very little support. nobody tells you how to deal with the effects rather than the atualdisability, for instance I had someone threaten to call the police as he thought I was hurting my son, when all I was doing was trying to get him home. We have a parents support group in our home town, but it is constantly threatened with closure due to lackof funding, even though it is a lifeline for us. It seems that if your child has an educational statement then people will help you and give support, but if they don't then everyone seems to think that there is not much of a problem and you should be able tocope by yourself

Sarah | 18/05/2007 08:01:00

My son has behavioural problems and these have presented since about age 3 when he broke a window on purpose because he 'felt angry'. Social services will not help. He forever keeps my youngest child covered in bruises, and now he is bigger, 7, he has a good go at me too. He has broken doors off hinges, broken more windows, attempted suicide. This is making mne down too. We were referred to play therapy but only after self referral to the child psychology service - the health visitor literally laughed in my face and said all children are different and not to worry. instead of the playtherapy we had the psychotherapist from hell who said it is all my fault and I am transferring my anxiety on to my son. She decided this after half an hour and she had never met me in her life before. The case is still in her hands so when my son tried to jump from a first floor window and we had an 'emergency' referral to the mental health service, nothing was done because she is still in charge of the case. The way she spoke to me was damaging to my son and myself and I will not return to her. I would like to work more but I cannot because I never know what sort of day we are going to have, and it is a struggle putting on a brave face all the time. I have had some respite this week as he has been ill - Ironic really. I know hes better today because the screaming shouting and hitting has started again.

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Doris | 18/05/2007 11:00:00

When there is a child with disability in a family,it is those who care for the children that suffer the most.they no longer have life of their own

Ros | 18/05/2007 11:55:00

I'm the mother of a 22 year old with Down's Syndrome. Her life thus far has been one constant battle and it started at birth when the consultant surgeon asked me bluntly "Are you sure you want me to operate? You do know she has Down's Syndrome and will live if I do?" She had a bowel blockage which meant without an operation she would die - he was willing to "let her die". This was the British NHS. I am no pro-lifer but I was appalled at this attitude. I suppose I was fortunate that this gave me a taste of what was to come so in a sense I was prepared for it. All services fail us - there are some very good individuals out there from all professions but as a whole the "services" are not actually services: they do not provide what we need, or not in the right way, or not at the right time. Serviceland is geared round the needs of professionals and staff and of course budgets - but most certainly not around the needs of the recipients. Ros

Anjee | 21/05/2007 11:46:00

I teach in an EBD school. I also have a 14 year old son currently in the process of being statemented for EBD. What infuriates me most is constantly being turned down and having to appeal to get anywhere. I know the system and I have had help from all kinds of professionals, but I cannot imagine what parents without this knowledge do. I'm sick of being told 'off the record' by doctors, Ed Psychs, etc. that it's all down to money. My son is entitled to help - I pay taxes and National Insurance.

Jo | 21/05/2007 13:08:00

We have been lucky in that we have largely felt "supported" over the last 11 years. We've had a sitting service thanks to Barnardos and use a hospice because our son has life threatening/limiting medical problems. The school nurses at his wonderful special school are fab as are the community nurses. Faults have been the lack of co-ordination between services, the sheer time it takes to get anything sorted out and the lack of OTs and provision of special equipment. Also there has so far been no support for Cameron's psychological needs ie. getting him through his understandable fears of having continuous and serious life threatening operations/procedures which often overwhelm him. A psychologist wanted us to give him time out or take away a privilige so he would learn not to have tantrums - they have no idea how to treat patients with special needs/learning difficulties. This just made it 100 times worse - only direct and constant attention for an hour so he could ask questions like "who will look after me if I (the child) die?". Also there is never any hint given of what might be expected for the future in terms of being able to plan both his and our lives. We were finally told by the hospital that, in their opinion, he will always need sheltered housing which we agree with but we are older parents 45 and 61 (and I have had type 1 diabetes for 35 yrs) but we have two other children aged 7 and 5 yrs and we need to carry on working regardless to pay off a mortgage for a house big enough to keep them all in. It would be nice to know what might be available for our son to do in the future after school years have ended but it seems to be "just worry about that when the time comes". Being allowed to plan ahead seems to be a luxury not open to us.

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Sue | 23/05/2007 09:59:00

My son is now 6 he has a full statement for severe language/communication disorder ie. autism by another name from a paediatrician who can't make his mind up. He is in mainstream school and while I am delighted he is learning to read and write I can also see even in Year 1 that he is being set up as different by the other children, and the worst thing is that now he is a bit older he knows he is the butt of their jokes etc. But I don't think the answer is to put him together with "his sort" as they tend to learn even weirder behaviours. This area is a minefield - too "good" for special schools but so different from the majority. I find it staggering at the lack of actual proper studies on how our children are really faring in these mainstream systems. It's all anecdotal. I shudder when I read some of the comments above about their difficulties and lack of support and preparation for adolescence.

kerrylac | 27/05/2007 11:44:00

I Have an eight year old daughter with Downs syndrome autisim,glaucoma and many other conditions. I have two other children as well, most of our help is from the family. I started going to a Toy Library based in the local special needs school for special needs children when my daughter was born and the people involved helped me through the nightmare of home teaching, statementing and finding the best place for our little girl. She is now in the multi sensory class because of her complex needs which is helping her develop at a faster pace. I feel that it is unfair for most children unless they have moderate learning difficulties to be intergrated into mainstream school where the children may be educating non special needs children but most struggle to keep up with a programme that has not been designed to suit their abilities so the children have the stigma of always being behind as well as being different. I am lucky that I have such a good school where my daughter can complete her education following a programmed developed especially for her and her needs. Apart from school life is a constant battle where you feel more like a prision guard than a parent and sometimes life is hard. Unless you have a special needs child you do not realise how expensive it is and how hard it is to find time to keep normality going. My husband was ready to leave because the strain was getting too much and we had no time for each other and he had to work all the time to pay for the big house we thought that she needed. We have made the radical decision to downsize and try to find each other as a couple and start working for our family together I just hope we can work it out

Sarah | 04/06/2007 10:12:00

Kerry yes it is such hard work and financially and physically I think people do not realise. You should not have to be made to work 'at all costs' A weaker person than I would have given up ages ago and put their child in care, which would cost the government more. I would like to see people with children who get DLA NOT having the 'disabled element' of child tax credit REMOVED from them! This happens to us and I am sure loads of other people because hubby's income is between 30 and 40k. I cannot work, I have finally faced up to the situation. My son needs me to be strong and it is a struggle to be strong when you have had 4 hours sleep and then try to earn money as well as run a house. His bedding needs washing everyday, he has eneuresis in the day and night, I really opught to vacuum anywhere he has BEEN every day as his eczema is so flaky you vcan see where he has been sitting, he leaves a trail. It took 4 hours to get him in bed last night. I have finally been referred to a child mental health nurse for my son and for the first time some one has bothered to go through all his medical history and actually listen to me and believe me. I do feel imprisoned by my situation sometimes then of course get the guilt I suppose a lot of us get that this is my son and I should not feel 'trapped' or 'at the mercy' of a child. We rarely go out as babysitters could not cope, I have not really slept a full night since before he was born (7 years) and on holiday last week he just kept wandering off. It is so stressful. I try to have faith that it will get easier then the headbanging and screaming starts and I feel foolish for having optimism. Downsizing yes definitely that is what I am doing and it is hard, I have always made things happen in the past, now life is happening to me and I am picking up the pieces. It is hard give up control.

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Samantha. Huddersfield | 16/06/2007 16:24:00

After reading all the comments i have decided that services are the same all over the country. I have an 11 year old daughter with down syndrome. Doctors gave me a 95% chance she would die before birth and were very unsympathetic. She has endured years of illness and constant visits to the hospital. The care we recieved from services in north yorkshire were excellent but since moving back to west yorkshire it feels like we have been abandond.I also have 2 other children one who has dyspraxia and dyslexia and the other who has selective behaviour. I wouldnt change any of them but nothing here has ever been offered no respite no groups NOTHING. The systems are all wrong. I decided to get an education so am studying for a degree in medical genetics and because of this i can no longer recieve carers allowance even though i am still the primary carer for my daughter. The system stinks. More help and support groups should be available, and if they are we as carers should be informed about them.

Karen Munro | 02/11/2007 11:12:00

I am a single parent with a visually impaired son aged 11 who has just gone up to secondary school. He has gone from being outgoing and popular, in the top 10 pupils in our village school to being virtually a recluse who is failing academically in the 3 months of being at the secondary school in the nearby town.

My younger son is 8 and is autistic - although I don't have a specific diagnosis because to get it he has to spend 6 weeks, 3 days a week going to a family centre in our nearest big city 14 miles away and I have no way of getting him to and from the centre at the times they need him because I work full time. It has taken 2 years of fighting to get to the point where they have taken it seriously enough to allocate him a place and now I can't get him there.

I have no family nearby and although I have friends there is only so much you can ask friends to do for you. So yet again I have a very complex, stressful situation to deal with alone.

This is not an unusual situation - there is always another crisis looming and i couldn't possibly describe all the previous examples - I'd be here forever. Twice since I've become a single parent I have been off sick for months on end with stress. I've only been back for 3 weeks this time and I'm glad to be back but I really didn't think I was going to be able to get back and I suspect that there will probably come a time when I go off again and have to give up work. Then it'll be yet another case of single parent family, with two already disadvantaged children becoming even more disadvantaged because we fall below the breadline. And then it'll cost the tax payers loads to support us - in comparison with the small amount it would cost the tax payer to provide a service that would support parents like me and the others above.

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