[advert:mpu]As a result of my ‘crisis’ last week, I decided it was time to review my network of support and discover what I was entitled to in terms of help, respite, intervention programmes, and whatever else was available to help me care for my three children, two of whom have an Autism Spectrum Disorder (ASD).
I spent a week on the phone to various agencies, individuals and charities, pestering them, pouring out my woes and generally making a nuisance of myself.
The story goes like this; I’m a single mother of three boys, two with ASD (Asperger’s aged 8 and ASD aged 3 and a half) and I am at the end of my tether. The child giving me the most trouble is Jack, my eldest whose behaviour I find difficult to cope with at the best of times. My marriage broke down six months ago and I have been coping on my own since, although dad has regular contact with the kids. At the moment, I get no intervention or respite except for 12 hours a month from a charity called ‘Carers’. I appealed recently for dad to take Jack on permanently with the response that he would insist that the family house be sold to enable him to house himself and our son adequately (he’s currently living in a one room flat). My appeal was that neither of us really wanted to split up the family but something had to be done to give me support and keep the family together.
Interestingly, Social Services, the one you might have thought to be the most concerned, appeared to be the least concerned. After a lengthy chat on the phone, the duty social worker stated that she felt I was a good mum and that reassessment would not be necessary. Cheers pal! What do I pay my taxes for? The response from the children with disability service was the same – I’m still waiting for a response from them.
The Health Visitor and Special Needs Health Visitor have made appointments to see what they can offer in terms of getting Samuel a full-time place at nursery to give me a bit of a breather. And the Special Educational Needs Coordinator (SENCO) sat down with me and we filled out a Common Assessment Form which will put us into a database. What this will do I’m not quite sure, but she is also exploring places for Samuel and says she will get back to me.
Sum total? Not a lot! The reality seems that if you have a disabled child, let alone two, you are left to fight your own corner. No-one is really that interested. That is what is truly depressing.
A little information for parents could go a long way to helping them enjoy trips whilst their kids still need a buggy.
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It got to a point with Jack, my eight year old who has Asperger’s syndrome, that I appealed to his Dad to take custody of him because I had had enough. I couldn’t take it anymore.
We can't get an appointment so the therapist sent some advice sheets. What is this? Do-it-yourself speech therapy?!
Now, I know that he is a middle child and may be at a disadvantage. However I believe that he is suffering from the added pressure of being sandwiched between two autistic brothers.