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.
