We spend a lot of time at the hospital.
Sometimes we’re chronic, and sometimes we’re critical. Today, we were curious. We spent an hour with a truly charming neuro-immunologist having one of the most depressing conversations I may have ever had.
I was hoping to be wowed by doctor magic. I really need to stop believing in doctor magic.
Billy’s first diagnosis was PDD-NOS, then Transverse Myelitis. Then came the GI issues. Then the full ASD. Then the epilepsy. His energy is depleted. His motor skills are impaired. The world takes a toll on him.
We’ve had a neurologist for the longest time, and today we got to meet the next line of defence – the neuro-immunologist. We wanted to know if we should be standing by for any new diagnoses.We’re starting to feel pretty unlucky.
The doctor listened carefully to everything we had to say, sympathised with the dilemma of the autism parent in the medical system and told us he had no idea why Billy has so many suckful medical conditions.
He said can see there’s something, and he suspects it has something to do with his immune system (and less to do with his mitochondria or his metabolism). He says genetics need a good going over. But he was very clear that we are in the realm of real but currently unquantifiable, medically. At least in this country.
Now, why am I telling this story? Apart from giving my fingers something to do in between the disappointed wine drinking?
Well, it’s a rare day that goes by when another autism parent doesn’t say to me… ‘well, if the doctors were worried about something to do with my child’s health, they’d tell me.’
I’m here to tell you, people, they wouldn’t.
Why? Because they genuinely do not know.
I think some of them genuinely want to know, but the momentum is simply not there to find out more.
We are also seeing, that when individual doctors do learn, they think long and hard about sharing their knowledge, because it is the sort of information that will shake up the public health landscape around the world in a gigantic way. And it’s a rare doctor that is confident about doing that.
The information required is the sort of stuff that makes people need to change their lifestyles, make decisions that make them stick out from the crowd, protect their kids from ‘normal’ life. Normal people. Run of the mill, everyday folk, changing their lives to keep their kids functioning.
But it’s not just the doctors. There’s also the issue that corporate (governmental) knowledge of autism is lagging years behind the lived experience. This wouldn’t necessarily be a problem, if autism was universally the quirky talks-too-much-about-Star-Wars thing that we are led to believe it is. It wouldn’t be a problem if the bureaucrats didn’t need to believe that autism needed no more than some EI and the odd social skills group.
They not only have to learn what autism really is, they need to be willing to change the entire system to accommodate this new reality. No wonder it’s not happening.
Sitting in the presence of skilled and sensitive doctors who say, ‘I can see what you see, and I don’t know what it is’ is my least favourite parental job. I don’t want to hear that the biggest children’s hospital in the country are flummoxed by my son’s health. I also don’t need to be placated by statements like, ‘But autism wise, he’s pretty good.’
I am not the only person I know in this oddly comfortable leaky boat.
My co-floaters have beautiful teens in profound mental health crisis, tweens with degenerative movement disorders, primary schoolers with mito and pre-schoolers in psych lockdown.
‘Boy, I’m glad that’s not us’, I hear you say, ‘my kid just has autism.’
My kid just had autism too. So did the teen and the tween and the primary schooler and the baby. Autism is no more than a word (and that’s from the mouth of the neuro-immunologist). It’s a name we give to a set of symptoms that are evidence of something not doing what it was built to do. And that something is what we really really need the doctors and bureaucrats to understand – the somethings that have become frighteningly common but are not normal.
And, don’t be afraid of the word ‘normal’ for heavens sake.
Normal to me, previous to this medical adventure, was not fearing for my child’s future. Normal was bringing up my son to achieve his goals and find inner peace.
Now, it’s the fervent wish we won’t wake up in a pool of urine, or don’t have to spend our sleeping hours ensuring our son is safe in the recovery position while seizing uncontrollably. It’s accepting that a good day has to include medication, and supplements and vigilance about food that would put a TV chef to shame.
It would be awesome if the doctors caught up, in all honesty. We could do with the back up. We are just keeping afloat here, and the flares we are sending up are seen but not understood.
We can’t sit back and think it will be OK. We can’t write ourselves out of this narrative. It is what it is.
I’d love to think that autism parents who don’t feel like they live in this leaky boat would find the space to stand up and fight for change. At the very least, I’d hope they wouldn’t fight against us.
Billy is our everything, and he is the most important thing ever, but on days like today, it (not him, it) is the opposite of fun. Literally, diametrically opposed to fun.
On days like today, I realise that love is quite literally the sea keeping this boat bobbing up and down. All the reading, all the studies, all the therapy… dissolves into nothing.
And we go back to scratch. Focus on Billy. On health. On happiness.
So, yeah… Today I learned, that unless you ask, they won’t tell you anything.
And if you do ask, you might come away wanting.
We have a long, long, long way to go.