When you have your first child, you imagine their childhood to be filled with beautiful “wow!” moments. These might include being presented with a certificate in the school assembly, or coming first in a sports day race. What I certainly did not imagine is that instead of standing up proudly among my parent peers in a school hall, clapping my heart out because my son had been made “star of the week”, I would experience a D-Day instead. And more than once. What’s a D-Day? Diagnosis Day. And today we had one.
Kiddo’s autism has presented itself fairly obviously from day one. Not that we picked up on it mind, but when you look back you can see it clearly there in the background, almost sulking and waiting for the right time to make its move. And when it pounced, there was no hiding from it. It was there for all to see. At the time I thought this was a huge blessing, getting a diagnosis would be easy! And actually it was in comparison to most people. But there’s one thing I didn’t count on. What I didn’t realise was that autism was about to take the blame for EVERY single concern that we had about kiddo. Our child no longer had autism, he was autism and to most medical professionals that meant they could tick the box and say “my job here is done!”.
Now I didn’t believe that autism was the only character at play in this little game, I believed that there were other behaviours not related to autism that should be explored. So I asked. The response? “That’s just the autism Mrs Punter”.
Needless to say that this response left me unsatisfied. I wasn’t prepared to accept closure on kiddo’s investigations just yet. In particular, I was concerned about ADHD.
At the beginning of the autism journey I hadn’t really given ADHD a huge amount of thought. But again just as autism had been in the past, it was there lurking in the background ready to pounce. And as time unfolded, ADHD began to carve a different journey for us. One of exhaustion mainly.
He didn’t stop. I mean he physically didn’t stop. Even when he was still he was fidgeting. His body was incapable of being still except for rare moments of sleep which had usually been drug induced. I pushed for further diagnosis on the NHS but was only greeted by closed doors and dead ends. After all I had my autism diagnosis? What more did I want?
What I want (and what I still want) was for my child to have the correct support and treatment. But supporting a child with autism and ignoring all his/her other needs is like teaching a child capable of achieving a pro level in sport. Only you teach them in a completely different language. The support is there, but they can’t access it. They don’t understand it. There’s no way in. So they don’t achieve their spot on the Olympic team. I needed people to know the full picture about my son. Labelling him with one disability and expecting it to cover completely different disabilities was not acceptable.
So my search for an answer (or two, or three) has led to today. The first of many more diagnosis days. Today we received in writing that kiddo has ADHD, challenging behaviours and very demanding behaviours too. Now we explore a whole different avenue of medical treatment, therapies and possibly even some specialised parenting courses for the hubby and me. All because our child is so challenging. And it’s not down to him being autistic.
I read the letter this afternoon and then sat and stared into the garden. Another diagnosis. And most likely more to come. I felt elated, sad, exhausted and relieved all in one breath. This isn’t my first D-Day, and it won’t be my last. But what I have learnt is not to question how I feel about it. If I’m confused, I’m confused. If I’m sad, I’m sad. If I’m happy, I’m happy. Why do I feel that way? It’ll take a lifetime of therapy to work that one out. So instead when people ask me how I feel I will tell them honestly, and should they ask why I feel that way I will simply say “I have no idea”.
I don’t know if I will ever stand up in a school hall, clapping so hard for my son that my hands are red raw. But what I will do is get him a different kind of certificate. A certificate that entitles him to support, to therapies, to treatments. I will not have his needs blanket diagnosed to save time, money or energy.
So bring on the next D-Day, and the one after that. And I will applaud you kiddo for every part of you that gets investigated or tested. Because I love every part of you. Because that’s who you are.
Today our official ADHD journey begins. You’ll run ahead I’m sure, with all your energy! But your Dad and I will be there, waiting in the background, waiting for that right moment to pounce just when you need it.
Thanks for reading,