Thursday, 10 April 2014

One family's story of how our services have helped them

Sarah has been struggling for years to get the right educational supports for her 10 year old autistic son James.  Here she describes her battles with the system, and how Hearts and Minds were able to help.

My name is Sarah and I have a little boy who is ten years old, his name is James. James has severe autism, ADHD, sensory processing disorder, pica and severe learning difficulties. James went through the diagnosis procedure at around eighteen months old. This was because his autism was so apparent. James was taken on by a local authority special needs nursery at the age of three years old because the private day nursery, which he was attending could not meet his needs. James' dad and I pushed to get him accepted at a special needs nursery because we recognised that James needed specialist help and he needed it sooner rather than later. James had no recognisable speech, he was aggressive, he had no imaginative play and his behaviour was extreme. Our hope was that if our child was put into a special needs local authority school, then he would receive the specialist help that he required and surely this would bring out his potential, so that one day he could then live some sort of independent life when he gets older, right? Well at least this is what we thought. How wrong and further from the truth could we be.

James attended the local authority nursery for two years and we saw no progress. In fact things were going from bad to worse. They had speech and language therapists' on sight, we saw no progress in his language, he still had no recognisable words. His behaviour was going from bad to worse and massive melt downs were now a regular occurrence. His meltdowns were now that aggressive taking him out in the car was getting impossible. Temper tantrums started to result in violent head banging, which was so intense that on one occasion he hit his head that hard against the wall, he put a hole in it. Our quality of life has a whole was going down the drain and something drastic needed to be done.

Dale and I recognised that James needed specialist help and we needed to find somewhere that could provide him with an education and meet his needs. We had look around at a few schools, and one thing that came popping in conversation's with various people was ABA therapy, which is also a recognised educational teaching method. We found a school that provided ABA therapy and it was the only school in the north-west that provided ABA therapy. Having visited the school and having James assessed by the schools educational psychologist and also seeing how ABA was applied, we knew then that ABA was our preferred teaching method for James.

We expected that the local authority would pay for this education, we didn't really see a problem with funding James' ABA therapy, especially if it could improve James' quality of life, it could even promise him some sort of independence when he was older. Not to mention the fact that we wouldn't need as much help in social care because we would be able to manage much better. I mean who in the right mind would want to prevent and restrict a child from progressing and getting better. Who would want to disadvantage a severely disabled child? In my experience the local education authority, that's who! The local authority had us fight them in court for two and half years, while James was progressing at a fast rate thanks to ABA. In tribunal we provided evidence from independent professionals that showed proof of James' progress and their conclusion's of ABA therapy being the correct teaching method for James. Unfortunately we lost tribunal after attending high court twice because our son James, was not entitled to the 'best education' only 'adequate' and doing so would be a waste of tax payers money. We did not continue to persist with fighting for ABA therapy, due to the fact that fighting the local education authority bled us dry financially and then the ABA school shut down. James has now been back at the local authority special needs school for three years, he has continued to have ABA therapy at home for twelve hours a week. Also we had a meeting with the head of children's services and we managed to get an agreement with them and school, for an ABA consultant to go into school to train staff in the ABA teaching method, so that they could work with James and do a few teaching programmes with him. The progress he has made has been very minimal. James' educational statement promised all sort of therapies, such as one to one support, occupational therapy, speech and language therapy and physiotherapy. James does not receive any of these treatments.

We recognise that in order for James to succeed in life he needs a full time ABA programme. I first got in contact with the Hearts And Minds charity because I found on the internet, that they were possibly opening a school that may provide ABA therapy. I heard from a friend years previously that she had also read in the Irish autism magazine, that Keith Duffy was also raising money to open the school. I was really hanging on to this because there are no ABA schools in the north-west. Unfortunately James is now out of the age bracket because by the time the school opens he will be eleven. We wanted to strengthen the ABA therapy that James had, by getting our own consultant or using schools consultant. This was a no until very recently and before they agreed to it I was becoming very tired of my son not getting the education he was entitled to. James' behaviour was spiralling out of control. Life was starting to become increasing difficult for us and because James is bigger and stronger he was also putting himself and us at risk, due to his aggressive tantrums. Ian McGrath has put me in touch with Louise Gorman the family support manager at Hearts And Minds. Dale and I are so eternally grateful. Social services had really messed us about and not returning phone calls, school was trying to pull the wool over our eyes, with what James is entitled to. If we did not have Louise helping us, we would have no chance of succeeding in getting the right help and support for him. The whole system is exhausting and mind boggling. Especially when you have education officers and other professionals sat in annual reviews twisting wording and situations. They have a duty of care to meet James' educational needs and this is not being delivered. All of his educational requirements are being diluted bit by bit, by the school. James has since came out of hospital due to swallowing two teaching aids that perforated his bowel. James is meant to have one to one supervision at all times and school have put in an email to me, that their excuse is that they were trying to give James more independence in the classroom.

Again Louise Gorman has helped, listened and represented me, we are so lucky to have her. She has provide me with support, listened and advised me when no one else can or will. She has given me confidence to fight for my son once again, which has reduced my stress levels down to a minimum, knowing that I’m not alone to face a life time of fighting the local authorities gives me strength to carrying on fighting. It’s exhausting enough having a special needs child, without having to battle every inch for thinned out services. I feel that I can get James' educational needs to meet, with the help and support from Louise and Hearts And Minds, having this support is worth it's weight in gold. Louise is very knowledgeable in the educational law of special needs and she is also very experienced too. I also find Louise a very sympathetic and understanding person as well as being very approachable. I'm so glad that we contacted Hearts And Minds and have met Louise because without them we would be very stuck right now. I feel and know from experience that the service that Hearts And Minds provides is very important and greatly needed. There are thousands and thousands of vulnerable families out there that are not getting the right help and support that they are entitled to and it really is shameful. It is so important that people like Louise are being recognised for the all the good that they are doing in the world because it touches families like us and it makes a difference to our quality of life, knowing that there are people who are on our side, that understand and that will fight with us and support through the difficulties of having a special needs chid, is a wonderful benefit for us to have.

More about the charity here: Hearts & Minds Challenge 

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