Most of us will face decisions that we never imagined we would have to make. But, over recent years I've been asked to make some medical decisions that honestly, should NEVER have been asked. Infact, some of these are so personal, and wrong, that they definitely do not belong on any form of social media.
While my most recent request is not so personal, it's left me wondering how many other parents have found themselves in my position.
My Boy...
Makai, aka Knobby, is a few months shy of 3. He is a very charismatic and extremely affectionate, gorgeous little guy. I would love to be able to say how happy and bright he is, but the truth is, he's not. He's an angry/frustrated, non-verbal, not toilet trained, picky eater.
He wasn't always like this...
He WAS a happy, bright little boy. He DID talk.
Knobby's life started as normally as any other. He had a normal birth, was of an average size at 7lb 15oz, with zero complications. As a baby, he was a good feeder, grew nicely, was VERY alert and was developing as one would expect. By 12 months old he had a good handful of clear words and by 14 months was naming animals along with their sounds.
At 15 months of age, Knobby got sick with a 'viral infection', that lasted a good 2 weeks. (The illness itself, and what happened over the course of that two weeks, is a WHOLE other blog topic for another day) but long story short, by 16 months he'd stopped calling me Mum.
By 17 months, he couldn't make any animal noises, and by 18 months, he'd lost ALL words and the ability to communicate in any way.
He's had hearing test, ear surgery for tubes, with no improvement, more hearing tests, speech assessments x3 and behavioural assessments x2...and every time, I've walked away in tears after being told 'we can't help your son'.
The decision....
Yesterday, we finally had our appointment with the paediatrician, that we'd been waiting for over 6 months for. We talked about Knobby's history, our families, etc and the Dr observed Knobby playing.
Within the hour, he'd decided on a diagnosis.... Major Language Delay with Autism traits....I could have told ya that!!
The Paediatrician then asked ME to decide if he should diagnose him with Autism so we can access more services, funding and help.
Now, I most certainly appreciate this paediatrician wanting to help us get the services we need and funding to make it all possible, don't get me wrong.
It's just left me with a big bunch of questions in my head...
How often does this happen?
How many parents 'decide' on their child's diagnosis?
How skewed are Autism/ASD statistics?
But most importantly;
What's in it for him?
Oh my goodness! I wish I could say that I'm surprised by this, but I'm not. Do you mind me asking what country you live in? I'm a preschool teacher in Ireland and have heard similar stories. Not quite being told to self diagnose by doctors but plenty of times being told to keep a child up all night before an assessment, or don't give them breakfast, or fight with them constantly beforehand to get them all riled up so that they can appear 'worse' for the assessment.
Now don't get me wrong I actually don't blame parents OR doctors for this. It's the system that deems a child not severe enough to get the help that they so badly need. If they don't tick enough boxes they're left in limbo with clear and obvious needs, but missing out on a vital 'tick' that means they get NOTHING.
I don't know what you decided to do but as parents we do the best we can for our children. I wish you and Makai all the best and all the strength that you'll need. 🤞
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