Appointments, Ignorance and “My Boy Wonder” #ThisIsAutism

He’s 9 and my middle child (I have one older aged 12 and one younger aged 2). He was diagnosed with Aspergers aged 6, ADHD aged 7 and last month I was finally told by CAMHS that he is showing all the early signs of Schizophrenia and Bipolar.

The Asperger’s diagnosis turned my world on its head. I’d convinced myself he’d grow out of all the things he was struggling with. I gave up my teaching career, almost as a knee-jerk reaction, (within a week of finding out), I had a desperate need to try and take some sort of control of the situation. It took me about eighteen months to readjust to his diagnosis and feel that we would be ok. But I felt completely alone, no-one really seemed to understand the depth of grief I felt for my son. How I had to alter the hopes I had for him and find a new way through all the emotions.

This is where Twitter made a world of difference to me, in a way I never thought possible. One day I began searching for autism and suddenly I stumbled upon an entire world of support and advice. It was a bit like The Wizard of Oz, going from the black and white world I was in, to the technicoloured world of Oz, (without the wicked witches and flying monkeys).

I’m lucky enough to have an amazing family to support me but to have others who truly understood ASD and could give advice or just listen made so much difference and there’s something about the anonymity of Twitter that gives you the advantage of being completely honest.

Even now when I do what I call the equivalent of sending up the ‘bat light’ by tweeting something emotional I know I can sit and wait and usually within ten minutes someone will tweet me back and just give me the boost I need to hang on in there.

Boy Wonder had a really difficult time when he was seven and became incredibly violent, paranoid, depressed, self-harming, trying to kill himself – it was heartbreaking and social services were involved (the worst moment of my entire life). My sweet, little mummy’s boy was swallowed up by this…monster and I barely recognised him, (we now know it was his first psychosis). This was when we first tried drugs (for him, not us…although that was tempting ;)). Eventually after various drug trials he started on anti-psychotics, I started part-time home-school and gradually he returned to the boy we know. This was when I began to question Paediatric Bipolar, and of course I was dismissed and laughed at by his school, GP and even CAMHS at the time. He’s remained on anti-psych drugs ever since and whenever we stop them the old behaviours return. But, last month when we were told by his new Psychiatrist that he was showing all the signs of schizophrenia and bipolar I felt as if my world had ended all over again. I don’t know anyone with children like this and I feel completely alone and overwhelmed all over again.

That’s when I decided to blog! I set up a new anonymous Twitter account, so I could rant and rave and cry and swear and on my blog if I needed to and not feel I would be upsetting anyone who knew me, (what is it with keeping up the illusion that we’re fine for our friends and family in the real world?!). Some of my lovely Twitfam follow me now and reply and support as they did before. The blog keeps me sane and I get ridiculously excited when I see someone has read it! But mostly I feel I’m doing a tiny thing to help raise awareness. People know so much more about autism now (thankfully), and even bipolar, but schizophrenia is much less recognised, especially in children. So I’m quietly fighting my tiny corner telling anyone who wants to listen about our lives and helping people see that all of these complicated mental health issues don’t stop us being just like every other family…we’re just as crazy as the rest of them! 😉

Boy Wonder is amazing – a total wonder! He has all the usual things, need for routines, severe anxieties, social problems, school problems, bullying issues, sleep issues, intolerance of noise, severe fussiness when it comes to food, fabrics, shoes…the list is endless. BUT, he also has the best smile, the biggest blue eyes, the best cuddles, the cheesiest laugh, (I may be slightly biased), he tries to make people laugh, he hates people to be sad and tries to make you happy and if you’re stressed he will do something to try and help – or tell you it could be worse, ‘you could be dead’ and his honesty is cutting and hilarious…for example…

“Mum, your new green top might be best for Halloween or if you want to look like an elf!”

“Mum, your red top makes you look like an American and you know they’re not known for their dress sense”

“My nan isn’t elderly, she’s just ten years past her mid-life crisis!”