Thursday, 26 May 2016

Where is the support for the masking child?

Life as we know it is a roller coaster.

Yesterday's soaring high quickly turns into today's crashing low.

Yesterday I was celebrating when it was clear that our fantastic GP really does understand my family, trusts me and my judgement, makes suggestions that stand a chance of being helpful, and doesn't judge me when they don't work.

Today it is clear, yet again, that the people who work closely with my son do not understand him, and it doesn't matter what I say, they're not listening.

I feel that my son, who is due to transition in September, is being set up to fail.
Certain support networks are to be set up, which on paper is brilliant, but in reality, when my son is so desperate to fit in, he will not use these things as they will mark him out as different. This is likely to mean that, even if he doesn't have meltdowns, he will act up in a way that makes him look cocky, arrogant and deliberately naughty, which could spiral into detentions, isolations and exclusions.

I'm not expecting my son to have more support than any other child because he is my son, and therefore special and deserving more than anyone else.

What I do expect though is some understanding for his diagnosis and the way he presents, and some understanding that there are things that can be done in school, which will not mark him out as different, and will not cost anything to implement, and that could make a huge difference for my son, and mean that our family are not constantly living in what feels like a war zone.

The trouble is, when he masks as well as he does, no-one believes he needs support. We have a catch 22 situation.
Unless PDA boy starts to show his needs, there will be no support. By the time he does show these needs (and to avoid being accused of being negative again, yes, there is a chance that he may sail through secondary school without any issues at all) it's likely that he will then find it nigh on impossible to go into school each day, as has happened to so many children who present like my son.
As I've said in a previous post, support in school is reactive. When a child shows, beyond shadow of a doubt, that they cannot cope, parents can then fight for support. If the child shows nothing, there's an unwillingness to even acknowledge the autism in the first place, let alone offer any support.

I do understand that being a teacher today is difficult. So many government boxes to tick, so many children with complex needs to educate effectively.

But I am his mother, and it is unbelievably frustrating that it is so difficult to be taken seriously, and this is before we even get to the question of support. I am the one who sees how distressed my son can be after a day at school, I am the one who has to support him, and I am the one who has to communicate his worries and troubles to school, as he cannot tell them himself. Sadly I am also the one who is ignored and relegated to the position of being insignificant in proceedings.

I'm not alone in having a child who holds things in like this. Whilst this extreme masking may be unusual, I don't think it's rare, I think that these children are just not recognised as being on the autistic spectrum, to their parents' continuing despair.

The only thing we can do now is wait. Carry on encouraging our son to advocate for himself, instead of telling his teachers what he thinks they want to hear.

We now wait and watch with baited breath, hoping with every fibre that secondary will be a positive experience for him.





2 comments:

  1. Wow we're in exactly the same boat thanks for writing this I can completely relate. My 4 year old starts school this sept she is very good at masking her traits in pre school and will explode as soon as she reaches our door. I've recently seen shortfalls in my daughter's paperwork and access to services and referrals as they don't recognise her difficulties.

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    1. I hope school can spot her difficulties and give her the support she needs.
      Good luck!

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