Wednesday 22 January 2014

Living with a disabled child

It's coming up to 18 months since C and I were given the diagnosis that F is autistic.  It was not an unexpected diagnosis but it even though it was one we were anticipating it still came as a bit of a shock to have it officially diagnosed.

F had always had difficulties communicating; he didn't start talking until he was more than 2 years old.  In fact it was at his 2 year check that we discussed it with one of the local health visitors who referred him to a speech therapist.  By the time he reached the age of 3 he was recieving regular speech therapy but it was soon clear that he needed more help than the occasional appointment would give him.  He was attending a regular nursery but his speech therapist believed that he would benefit from more intensive sessions and recommended that he be sent to a nursery with a specialist speech unit.  It was at this point that F recieved the diagnosis of oral dyspraxia or as it's more commonly called speech/sound disorder.  He was able to understand everything that was being said to him and in the comprehension tests that he was given he scored above average for his age.  It was just that he couldn't vocalise everything that he wished to say.  Because I spent so much time with him I was able to understand him most of the time but for family members who didn't see him that often much of what he was trying to say was nonsense.  This lead to him on occassion becoming incredibly frustrated.

Once we had is diagnosis and the recommendation from his speech therapist we were able to apply to the nearest school with a speech/sound unit.  Because F was born in the first week of September he was entitled to another full year of nursery education; C and I consider his birthday being then rather than a week earlier one of the luckiest things that has ever happened to us.  If he'd been born at the end of August rather than the beginning of September he would have been going into reception one of the youngest in the class as he would have just turned 4.  As it was he was going into nursery as one of the oldest instead.

Once F started getting intensive therapy he thrived.  It was a hard thing for us all to adjust to; because the nearest school was about 5 miles away with limited access to public transport and me not being able to drive, F was driven too and from school by a taxi provided by the council.  I remember thinking the first day he went that he seemed way too small to send him away with strangers but all the drivers and escorts were really good with him and I knew that he was finally getting the assistance that he needed.  The only times it was hard was when the taxi firm sent a different escort to the one that he was accustomed to; he would refuse to travel with the new escort as he didn't know them.  If we were told in advance that it would be a different one then we could tell him and while he wouldn't be happy about it he would cope.  However if one just turned up on the door step that was a completely different story.  It was this more than anything that first started us thinking that maybe F had other problems besides his ability to communicate.

When it came time to apply for a primary school for F we were told that because his talking was so much better than it had been he would no longer qualify for funding for the specialist unit.  This meant that he would have to move to the local school.  In many ways this is better as it means that I can take him to school everyday; when he had to travel to school I felt as if I never really got to know his teacher or any of the mums of his classmates.  It was when C and I went for a meeting with his old teachers and the SENCO (special educational needs coordinator) from his new school that the possibility of his being autistic was first discussed.  His teachers thought that it was a possibility and his educational psychologist agreed to refer him for diagnosis.

Now that the referral was happening I did what I always did when hit with something I didn't really understand -  I went into research mode.  I hit the Internet and educated myself on exactly what autism is and its causes.  The National Autistic Society website was an invaluable tool, giving not only information about the condition itself but also reassuring us that contrary to what some still believe autism is not caused by the MMR.  I won't go into the ins and outs about it here, there's more than enough information out there about it, much explained in a better way than I could ever express.  In particular I recommend reading Ben Goodacre's book Bad Science which has lots of information about how the doctor involved in the original investigation of the MMR has been discredited.  I will say this on the subject though - before saying things like 'Oooooh, there must have been something to it' (a thing that has been said to me) or telling new parents to 'educate' themselves about vaccines - take a moment to think about what you are saying.  You are basically accusing parents of deliberately doing something to harm their child.  Take a moment and think about how devastating it would be for a parent trying to deal with the implications of being told they have a disabled child to be told that you are to blame for your childs' disability.  You wouldn't say that to someone who's child had a physical disability, so why say it to the parent of a child with autism?

I'm going to take a break here as I can feel myself getting upset about the subject and I'm beginning to rant.  Look out for part two in a couple of days.

No comments:

Post a Comment