I wrote this piece last year. I feel vulnerable sharing it, but if it means just one other person feels heard and understood then my heart will rest. i

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I want to tell you how much I cry silently inside when he arrives home from school and tells me how all the kids were talking about the latest birthday party they’ve been to and he matter-of-factly accepts that he wasn’t invited.

I want to tell you what it feels like to get ‘that tap’ on the shoulder from one of your child’s carers when they suggest there may be something in your beautiful son that isn’t quite fitting the mold. My boy was just three years old. He’d built a sand castle and attached a complex network of reeds and twigs to it to make a hydro-electricity scheme. This was a red flag…apparently.

I want to tell you what it is like to spend two hours every night holding him to help him go to sleep because his brain, or his life, won’t turn off enough to stop his limbs from being in constant motion. How he often sobs with the anguish of his school life.

How I have spent hours taking him to psychologists, audiologists, speech pathologists, chiropractors, herbalists, osteopaths, ENTs, kinesiologists and every other bloody-ologist looking for just one thing that might ease his heart. I want you to know that one unkind word from a child unravels that and sets us back weeks, months even, but you would never know because he is wary of how people respond to him and does his best to hide it. I collude in this lie.

I want you to know that he reads adult non-fiction and remembers interesting facts that you would never imagine a ten year old being remotely interested in. How he is a voracious consumer of texts but with that comes the fact that he’ll read something and repeat it in a way that your child finds odd, or you find too advanced or even just a bit off. I can’t stop his interest in the workings of the human body or his appetite for information. He can’t help that his filters aren’t set in such a way that he doesn’t know what to repeat and what to hold. He’s ten. He is a masterclass in obsessions, and he will fix your computer and can be found in long detailed conversations about cheat codes with the guys behind the counter at the EB Games shop.

I want you to know that it’s not his fault (although it’s taken me a long time to realise it’s not mine either). That being ‘that kid’ in the class seems to automatically make him guilty of all the transgressions that go on in the school yard. That even when he has the balls to speak or tries to let adults know he is being bullied, the first and default response is to suggest he made it so. That’s what happens to all the kids who are different – us mums know this only too well. And one day a teacher softly says ‘yes I’ve seen what they do to him’ and you can’t hide your relief, but you’re also angry that it’s taken this bloody long for them to see the reality of his world. And then there’s the guilt that I also didn’t act earlier and be his advocate.

It’s exhausting. I’m exhausted. He’s exhausted.

I want you to know that I love my boy and admire him for who he is but I carry his stress too and it magnifies in my body. Sometimes I avoid the school pick up because I carry the feeling that ‘I’m the mother of that kid’ even though I know it’s not my shit to bear. I suffer from a form of co-dependency – how he is doing is deeply influential on how I am, and in the past 3 months, as my little boys’ life has become increasingly more difficult, so my anxiety has exploded. Sometimes we can both afford to go to the psychologist, but most of the time I postpone my appointment so he can have his.

I want you to know that some days I just can’t face the drop off scene because it’s taken me two hours to move through the morning’s pattern of school refusal and I have nothing left to give – and I’m certainly not showered. I want you to know that meltdowns are exhausting and what works today may not work tomorrow.

I want you to know that there are endless appointments and expenses in our family. I work less because I feel I need to be ‘on call’. When my phone rings and I see it is the school, a hot wave of worry automatically rushes through me- I think must be a little like PTSD. And I have spent so much time in the principal’s office.

I want you to know that at times I feel desperate, and I run out of strategies. I often lose hope because I don’t know what to do next and my partner and I will have different ideas about how we might move forward. We are a bedrock of support for our little guy but even stones develop fissures. I want you to know that my daughter suffers and we do our best to not have our family life obsessed with my boy, but it’s hard, and she feels it and her resentment is understandable.

I want you to know that I would never judge another child for being who they are. And having a child like my son is full of its own rewards. Because one day he will be remarkable and quite possibly change our world. He is magnificent–the one you want on your team (although these days he’s consistently last pick), the creative misfit that actually has a fucking good idea or two. My boy’s sense of social justice is beyond his years. He feels with every fibre of his being and it’s overwhelming for him.

Yes, I want to tell you that he feels it all, everything. He overacts, a lot. He insists on rules but only as they apply to others. His behaviour is annoying. He doesn’t do well with maintaining friendships. He rarely follows instructions straight away. He goes to sometimes extreme lengths to avoid anything that makes him feel vulnerable. Believe me I know these behaviours better than anyone. He tells me he knows that the tall stories he has told to impress people have had the opposite effect, but no-one will give him another chance. That two weeks ago his latest ‘story’ had sufficient red flags in it for mandatory reporting. These are not the stories of our family life. The only subtext is ‘please like me’.

I want you to know that last week he cut off the beautiful long eye lashes he was born with because other children teased him about them. I want you to know that ten year olds shouldn’t be having an existentialist crisis or talking about suicide.

I want to tell you what it feels like to have your child lose his trust in you because you haven’t made it better yet. That is the kind of ‘epic fail’ no parent should feel.

And I want you to know I look forward to a day when our society practises tolerance in the truest sense of the word – a time when generosity infuses the way we respond to children with autism or Asperger’s or who are just their own people.

Because the system is a tough place for all of us, and all the programs in the world will not make lives better for these kids if the mums and dads, the teachers and the classmates who get to spend so much time with our children don’t show tolerance and compassion. We desperately need to learn how to embrace the different kid. I’m not sure what is worse for them – to be ignored or to be the target.

My son is losing his faith.
Yesterday he said to me, ‘Mum, why do I have to endure this?’
I cannot answer.
Just love…fiercely

 

© Lindy Schneider 2018