Thursday, 30 January 2014

Living with a disabled child part 2

Now that we had F's official diagnosis we had to make a difficult decision; whether or not we would have any more children.  I'm the middle of three children and C has a younger sister so for a long time I assumed that once F was older and we were in a better financial position that C and I would have another baby.  But as it became apparent that F was different to most children we began to reconsider.  There were multiple reasons why we came to realise that it just wouldn't be practical to have another baby even before F's diagnosis became official; the financial aspect, the fact that it would impact our social life, our home not really being big enough.  But the final nail in the coffin was the knowledge that autism is a genetic disorder.  If you have one child with ASD it greatly increases the likelihood that you'll have another and while F is classed as high functioning a second child might not be.  I know this is going to make me sound like the worlds biggest bitch but there's no way that I could cope with F and a severely disabled child.  So the decision was made and F will be our only child.

Since getting the diagnosis there have been multiple meetings with the school about F and how best to handle him.  In some ways we were incredibly lucky; because F was already Statemented for his speech/sound disorder we didn't have a fight on his hands to get him Statemented for his ASD, unlike some parents.  We've had a few problems with the school; there was an incident of bullying earlier in the year that the coach of an afternoon club didn't intervene with but I complained to the school and it most sorted pretty swiftly.  I felt vaguely guilty when we came back after the Christmas break and found that the original coach had been replaced but as C said if he wasn't up to the job then it's not my fault he got replaced.

Another incident took place soon after F started in year one.  We were in the playground before school and F was running around and knocked into another boy in his class.  To my amazement the kids mother turned around and shouted at F.  She said that he'd been being mean to her son all the previous year and was sick of it.  Now this was the first I had heard of it.  I pointed out that F is autistic and has communication problems but they were disinterested and threatened to go to Ofsted about him (not really sure what they expected Ofsted to be able to do about it given that its their job to inspect teachers not pupils)  By this point I was growing obviously upset.  I do not deal well with confrontation and something like this is a real anxiety trigger.  To be fair to the parents once the children were settled I spoke to them outside and once everyone had calmed down a bit they were more reasonable but at the time it was pretty horrible.

One of the biggest consequences of F's ASD is the way it has impacted my social anxiety.  Because he's my child and obviously I love him more than anything else in the world any criticism of him feels like a criticism of me.  And because his ASD causes him to have more behavioural problems than a neuro-typical child he tends to come under more criticism, mostly from people who aren't aware of his condition.  Those I can mostly ignore but it takes some doing sometimes.  It's the criticism from those who I'm close to and who are aware of his problems that is the hardest to take.  Disapproval from friends and family members can be devastating.

Well, this has gotten way more depressing than I initially meant it to be.  So to end it on a better note I will say this about F - he is a joy to be around.  He's got a fantastic imagination and a curious mind that is always looking for answers.  He even got a certificate for Worker of the Week from school for always asking interesting questions!  I wouldn't swap him for anything, and I'm not just saying that because when he's with us we get to skip the queues at theme parks!  It's a cliche but he's my pride and joy and I can't wait to meet the extraordinary grown up that I know he's going to one day be.


  1. Nope, not a bitch at all. In fact, a good deal stronger than me. One of the - dozens of - reasons that I am childless is that I am fairly certain that I could not cope with *one* disabled child. Let alone two. The love that the two of you show F is so very evident and lets face it, with his particular needs the lack of a sibling will be far less keenly felt. You are doing absolutely the right thing and wonderfully well.

  2. Just want to say that I find both this and your previous post extremely brave, honest and heartfelt. I have no idea what it's like to raise a disabled child - no idea what it's like to raise any child - and I have nothing but admiration for what you and C do.