Achey Breaky Heart

I always used to be a big cryer - sad stories, injustices, love, hate, yadda yadda yadda - I could well up at the drop of a hat.

When J was first diagnosed with Infantile Spasms as a wee babe and we realised that his path was going to be bumpier than average, I cried for days. Weeks. Huge great oceans of tears. Big, gulpy, primal howling some days. I understood the meaning of the phrase "heart-broken" for the first time.

Then J's diagnosis of Autism. Tears, but not the same level of shock. We knew it was the best outcome we could have hoped for after this cruel, rare type of epilepsy so there was a large dollop of relief mixed in. Strangely, though, it takes a fair bit to make me properly cry these days - thicker skin now? All cried out? Not sure, but it's a bit of a surprise when I find heaving sobs tumbling out of my soul.

This week it was J's school play. Me, Dave, Granny and Grandpa all went to see it. He attends a ASD-specific unit attached to a mainstream Catholic School. This was the Year 2 mainstream kids and J had been included. He goes into the mainstream class with one-to-one support a couple of times a week and has been on a school trip with them which he LOVED (mainly due to the double-decker coach and motorway journey, but still..). On the whole, this inclusion seems to go well for J. He's a clever kid and is academically able to keep up with his peers. No interest in the other children but he's beginning to ask me if he has any friends. He doesn't, by the way, but surely this question is a step in the right direction and something to work on. He managed the Christmas production last year so we thought it would be a good idea for him to do it again this year. See if you can spot J in the (very badly filmed) video at the bottom...

Did you see him? At the back? The lost and confused one - like a rabbit in the headlights? Did you see the member of staff helping him out? No. That'd be because that didn't happen. A couple of 6 year olds sweetly but very uncomfortably tried to help. Nice production, eh? Great costumes, no expense spared. J however, could not have looked more un-included and bewildered if he'd tried. Different - so very different from the other children. The fact that someone had forgotten to put any shoes on him didn't help. But inclusion? No. Token autistic kid? Hell, yes. He looked disabled. Unable. And that's not true. Ouch.

So, as we drove home my floodgates opened in a big way. I cried myself puffy and hoarse.

There are lots of layers of sad to this event:

Firstly disappointment for J who had spent weeks singing the songs to us at home and saying his line over and over - he missed his line, by the way. Not fast enough. Inclusion should support kids to achieve success - not failure. I would HATE for him to ever feel like a failure because he's far from it!

Then anger that he wasn't supported by an adult - would it really have spoilt the look of their precious production to have had someone there next to J? It is, actually a good unit - lots of the staff are lovely and we DO appreciate their hard work but, as parents, we want to know that J is in the right place for him. The place that intuitively knows how to bring him on to be the best that he can be. We have every faith that he's going to get there one day but of course we're going to speak up when things go wrong to try to fix them for the next time.

Next is a huge reality slap that J IS different. Of course, I know that he is but when the comparison is thrust under your nose.... It's not actually the different that bothers me - it's the being lost in the world of "normal", if that makes sense. We've been gradually getting more and more socially isolated (more in another post I think) so I don't know what a "normal" six year old looks like these days. This is the selfish bit of the sad but it hurts like hell.