All the help in the world isn't enough

I’ve had to inform the OU (Open University) of my intention to withdraw from the two Psychology modules that I was enrolled in. I feel a bit disappointed because I really wanted to do this and I was looking forward to getting my teeth into something FOR ME for a change but it obviously is not meant to be.

What other things am I involve in you may well ask? Well at the moment it feels like I am taking on the whole world in terms of fighting for access to services for my children. I’ve been counting up all the different professionals and services/agencies I deal with on a regular basis because of my autistic children. Here are just some of them:

Special Needs Health Visitor, SENCO, Speech and Language Therapist, Specialist Speech and Language Therapist, School Nurse, Community Paediatrician, Portage Worker, Community Nursery Nurse, Educational Psychologist, NAS support/outreach worker, Social Worker, trainee Social worker, and Occupational Therapist...

My problem is that not all of these services come automatically; many have huge waiting lists. In fact the local Occupational Therapy department’s lists have reached 18 months long! Where does that leave my 8 year old son Jack who still takes an hour to get dressed because of his poor co-ordination, who can’t use a knife and fork properly and whose handwriting looks like a spider’s crawled across the page?

I recently wrote a stinking letter to the local Paediatric Speech and Language Therapy department to complain about their lack of intervention with my language-delayed Samuel, now three and a half. He’s been assessed and reviewed once but we’ve still received no word as to when he will see a Speech and Language Therapist to help him with his language delay. I phoned the department last week and was told that some advice sheets would be sent on how to build ‘Special Time’ into his play time (which I do anyway) and that he would be reviewed again in 4 months time. What is this? Do-it-yourself speech therapy?!

So, for the meantime at least, any hopes of continuing improving my education and career prospects will have to stay on the shelf for now. Shame…

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