This week has been extremely busy for me. Monday was a bank holiday so the children were off school, Tuesday was a good day for me because I had time to walk the dogs, see to Cola and ride him but Wednesday and Thursday have been taken up with hospital appointments.Wednesday I had an appointment with the Breast Cancer surgical team and the good news is that everything is ok, but I knew that anyhow!
Today I had an appointment with the Autistic team at Wrexham Hospital with regard to my youngest son. His assessment has been fine tuned to better fit his existing needs and the outcome of our meeting was that Dr D is going to refer H to the ADHD team for assessment, he is going to research OT or Physio and give me copies of his report so that I can give it to the relevant bodies.
I contacted the three major parties in relation to the NAS campaign and the Liberal Democrats were the only party to respond which is quite sad.
I am really frustrated with the entire system for children with special needs. I knew that there was a problem with my son by the age of 2 and yet there was no support for me at all. The Health Visitor was as much use as a chocolate fire guard and never once followed up on us despite referring H for speech therapy and despite the fact that I copied her in on all of the reports and assessments I had done. She was a complete waste of space and I am angry that such an incompetant person can be in such a position being paid good wages. She has let me, my son and my family down.
When H was referred to speech therapy, luckily for us, not many children turned up for the group and the therapist quickly identified that there was something more of an issue with my son than just speech. She fine tuned his speech sessions and turned them into a language assessment. This was good for us because H does not concentrate very well and the "normal" 3/4hr assessment would not have worked. The result of this assessment was that H needed one to one support in the classroom........ He was 4! It took me until he was 7 1/2 to get him one to one support, until he was 8 to get him outreach language therapy and now his language is up to speed, they have identified that his reading age is very young and this is a huge problem seeing as how he only has 2 more years left in primary education.
My gripe is.....
WHY? didn't I get more support
WHY? did I have to rely on chance to get a language assessment
WHY? did I have to be grateful to luck on knowing a doctor who carried out an autistic assessment
WHY? did I have to have depression and therapy before the autistic team got involved with us
WHY? can't the education and health service work together to provide a more complete service
WHY? does each problem have to be tackled seperately instead of as a whole so H has problems with fine and gross motor skills, speech language and communication, reading and writing
WHY? are the waiting lists so long for each source of help
So with that off my chest I can now return to the joys of parenting a child with autism.
It is this way in America too. I don't know why this is the case. Maybe there's no money in it. A fact that's sad but true.
ReplyDeleteAutism is such a broad spectrum of behaviors and symptoms that it's hard to have a comprehensive view of it as a disability. But.. We really need have the testing and diagnoses done when the child is very young so that the child starts school with an IEP set in place. Parents need information and cooperation. Here, they get very little.
You will have to be your son's advocate until the powers that be GET IT RIGHT.