It’s good to talk

Really lovely morning in a gorgeous coffee shop chatting with a friend of a friend about children on the spectrum.  Why is it that everyone I know with children on the spectrum recognises that Mr12 is on there too straight away just from a few things I say, but that the professionals that we have come across don’t?!!

I often find that I will say Mr12 did this or that and they will be nodding and saying ‘Oh yes, mine does that too!’

I am so ready for this review….labels are necessary for people to see that there is nothing ‘wrong’ with them, that they aren’t just doing things to be annoying.  But it isn’t an excuse for bad behaviour either..it is a reason for some though!  For example, if, as a parent, I choose to have a concrete doorstop in my house, then I should know that there will come a point when it will be used to put it into the door, that a doorstop shaped hole will appear.  Well, we have a hole in our door…it could have been worse.  I shall look on it as a war wound.  We should probably get it fixed but sometimes it serves as a reminder that temper needs controlling.  Not in a ‘rub your face in it’ type way but as a kind of physical post it note…..’tempers can damage the house…avoid if possible!’

Maybe I will make it into a sign.  We have lots of thoise up around the house.  We used to have loads when Mr 12 was young but kind of tailed off a bit.  It was in the wilderness years when we felt resigned to the fact that the professionals were not saying he was on the spectrum so we should try to get him to conform.  We can’t, of course,  so the signs are back .  Some of them are even laminated (go me!!) to prevent easy destruction……although Mr 10 probably feels like cutting a few up sometimes!!  A kind of silent protest on his behalf…’I am here too, stop hogging all the energy’ kind of thing.  I really feel for him.  Having a big brother who is like a volcano waiting to erupt can be equally as difficult as being the volcano yourself.  We are trying to think about how we can help him too….so much thinking…it’s no wonder my head hurts..no wonder I need to talk about it!

The journey begins…..

We have just had a letter to say that our GP has referred our 12 year old for an assessment.  We suspect Aspergers/ADD…maybe something else.  What it is not is nothing….and so we are doing this for him.

I want to start out by saying that we love our boy very much.  We love every bone of him…every line and freckle.  He is funny, he has a wonderful sense of humour and loves to laugh.  He is imaginative and creative building Lego structures for hours at a time.  He is caring and loves looking after people, and animals, smaller than him.  He has a very loud voice and he leaves his clothes all over the floor.  But, since he was 18months old I have suspected that he was on the spectrum.  I probably couldn’t have pinpointed what made me think that at that point but I knew.  I am his mum and I knew.  As he got older I still knew.  I am a primary school teacher and I knew.  And now he is 12 other people are beginning, slowly to see that too.  I have never had to convince friends of mine who have children on the spectrum that I think there is something different, but I have tried very hard to talk to ‘official’ people and others and explain to them why I think this is the case.

But this is what I feel I have come up against…either that I think my child is somehow less that perfect and that I think there is something’wrong’ with him (i’ll come back to that later), or that I am an over protective mum and any kind of help (that I haven’t even asked for) costs money so, basically if it doesn’t affect them then it ain’t happening.

I don’t think there is anything ‘wrong’ with my beautiful boy.  I think he is wired up differently to some people and that he finds some things difficult that we would take for granted or not even think about in the first place.

But now it has got to the point where he notices that he finds things difficult that a lot of others don’t and it is time to stand up and make myself look stroppy to people I haven’t dared do before. I want to right it all down so that it might help someone else too….there are countless other children like ours and they shouldn’t slip through the net.  They need, and deserve, understanding.  Just because you can’t see it, doesn’t mean it is not there.  You just have to change the way you think to accommodate others.

So next time you are in the supermarket and a child is ‘kicking off’, even one who looks like he/she should be old enough to know better, just stop and minute and wonder WHY.  Maybe the lights are slightly flickering or making a buzzing noise that you can’t hear.  Maybe the smell of the bread that they waft around is offensive to that child (hard to believe I know!), maybe the trolleys squeak or there are just too many people in the shop.  Maybe the queue is too long and waiting is more than they can deal with. Or they had to drive a different way to even get to the shop. Their clothes are annoying them, they are hungry and the shop was sold out of the food they normally eat, people are wearing bright colours or talking too loudly.  I could go on and on about the reasons that child might be having a ‘meltdown’.. They deserve understanding…..not tutting at and having people think badly of them.

So, we shall see where this takes us….hopefully more steps forward than back. Humiliation is now my friend…I’m happy to share it all here…if you have any helpful suggestions then please feel free to leave a comment.

Before I go…..the reason we want a label for our child, despite both being teachers and knowing that as teachers and parents labels are very frowned upon, is that I CAN lead to understanding.  It can lead to totally blank faces or the look that tells you ‘that’s just made up, they are being naughty’ but it can lead to the best medical appointment you have ever had because the nurse ‘gets it’ when you phone her beforehand to say that you have a referral and how she can make the experience easier……we love Nurse Hilary now…she gets it!  🙂