What Doctors Don’t Get About Autism Parents
October 4, 2016
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Now Reading: What Doctors Don’t Get About Autism Parents
October 4, 2016
(ORIGINALLY WRITTEN & PUBLISHED ON OCTOBER 4, 2016)
Not sure what this post is gonna be about yet. And based on the title it might not be the post you were expecting.
The idea for this post has been in my head for a few months now…ever since I attended an autism conference a few months back.
At that autism conference were a lot of bio-medical doctors and medical professionals who were recommending lots of different / alternative treatments for kids on the spectrum and suggesting lots of different / alternative medical tests for autism parents to consider running on their asd kids.
And this post is not about bashing any of those treatments. I’ve written before how we tried many of these treatments years back and…
I believe that some of those treatments work! When people rave about the amazing improvements in their kid after ___ treatment I don’t think they are lying… and I am truly THRILLED for them. They just didn’t work for my kid. I covered my take on biomedical in two posts that you can read HERE & HERE
Anyway, so this post is not about bashing any of those treatments. This post is just about the look I saw in some of those parents’ eyes at that autism conference. How overwhelmed they looked. Some of them were at this conference for several days and their heads were spinning.
And I know that feeling. I remember feeling that way.
And it’s not a feeling of disillusionment. It’s a feeling of hope…. “if it worked for that kid maybe it will work for mine”
but it’s also a feeling of “where the F do I start? Which treatment should I start with?”
And it’s also a feeling of “How the F am I going to be able to afford this?”
But it’s also a feeling of “how am I going to get my kid to do this or take this or sit still for this.”
That’s what this post is all about.
This post is about the fact that most doctors don’t have a freaking clue how difficult some of these simple things are for our kids.
One bio-medical protocol required parents to bring their kids in for blood work every 3-4 weeks or so. Simple enough, right?
No. Not simple for my kid at all.
Do you know how hard it used to be for my autistic kid to sit thru blood-work. Do you know how many phlebotomists (the folks who draw the blood) he’s kicked. Do you know how many times we’ve put off getting blood work done because wifey or I weren’t in the right mental mindset to take that on?
I would book the blood-work appointment three days in advance and then stress about it for three days… and then if my son gave any indication of having a rough morning I’d cancel it last minute.
This holds true for any kind of needles. Needles for drawing blood and needles for injecting something (like vitamin B12 injections). They can all be torturous for our kids.
Now I know many doctors would think we autism parents must be crazy for shying away from even trying a new treatment because of our kids fear of needles…
But do these doctors have any freaking clue how difficult needles can be for our kids? Do they realize that it’s many times a two parent job? That means that still to this day, any time my kid needs to get blood drawn or an injection done I need to take time off from work so that he can sit on my lap while I pin his hands down, and wifey holds his legs down so nobody gets kicked.
Most doctors don’t have a clue what goes in to the planning for even the simplest thing….
Taking vitamins? Supplements? Any pill? I didn’t think that my kid would ever get the concept of take this pill and wash it down with that water.
And he still doesn’t get that concept.
One of the greatest days of my autism parenting life is the day that I realized that if you put a pill on a spoon with some baby food he would swallow it down no mater the size… stuff on spoons he will swallow…
but that’s just my kid… many other kids on the spectrum can’t or won’t take pills… or if they will it’s a DAILY BATTLE.
But many doctors don’t have a freaking clue how hard something as simple as “have then take this pill twice a day” can be for our kids…
And of and it’s not just many of the autism doctors who are pushing the bio-medical treatments that don’t have a freaking clue… I’m not singling them out in their clueless-ness of the realities of being an autism parent…
it’s many of the regular doctors as well.
A couple of months back we thought my son broke his finger. The doctor recommended an xray to make sure… and my instinct was to say “nah, let’s just wait and see what happens”
My doctor must have been thinking. “What they hell is wrong with this parent? Wouldn’t he want to know immediately if his kid has a broken bone?”
Of course I would… but does this doctor realize that taking my kid to get an xray requires us to give him benadrl and melatonin in the middle of the day so that hopefully he will be sleepy enough to keep his hand still long enough to get an xray.
years back they thought my kid was going thru advanced puberty and one doc recommended he get a special “bone age xray”.
“What does that entail doc?
“Well he just needs to keep his hand perfectly still for 3 minutes”
“Yeah that’s not possible… at least not while my kid is awake”
So we put off the test until wifey and I were both mentally prepared enough to handle it.
Then we stuffed him full of benadryl and melatonin and waited for our zombie boy to be completely sleep enough to get his hand onto the table for 3 minutes straight.
I think we were there for over 3 hours.
I could go on & on. Most doctors don’t have a freaking clue what we have to deal with
Forget about bringing my kid to the dentist.
We gave up on brushing our kids teeth years ago… literally just gave up… he won’t let us in and he’s now too strong to fight…
So every year or so we have to schedule an appointment with a special needs dentist, and he/she would do the cleanings / xrays / fillings in a hospital setting under general anesthesia.
That’s right… tooth brushing was so difficult for our kid that instead of trying to brush his teeth everyday wifey and I decided that the concept of putting our kid under general anesthesia once a year was the less stressful move.
And that’s not to say that it’s not stressful. This is one case where my son isn’t stressed out at all. In the days and weeks leading up to the dentist hospital visit, he is fine…probably because he’s oblivious that it is coming up… but wifey and I are stressing and have to get ourselves in the right mental mindset for this appointment.
I have to take more time off of work. And on the morning of, wifey and I are a barrel of nerves… but the king is pretty ok with it.
At the hospital they always try to give him a liquid sedative before the anesthesia and I tell them “he will spit that out… do you have a pill with some baby food instead?” 🙂
There was one time when he went in for his dental work. It was around the same time that we were supposed to get that bone age xray test done… I think he was also overdue for some blood-work and was also overdue for an overnight EEG.
And once he was under the anesthesia and laying there peacefully I said to the doctors and nurses:
“While he’s under anesthesia can we also get the bone age xray done, and the blood-work done, maybe clip his nails, and give him a haircut too while he’s under?”
I was serious about the first two and somewhat kidding about the other two, but alas they couldn’t do anything else while he was under…
…and these doctors probably thought I was crazy for asking… but that’s because most doctors don’t have a freaking clue!
That’s all I’ve got for now… I’m curious if you guys have similar issues with your kids and the doctors in your lives… maybe it’s more of a severe autism issue or a non verbal autism issue?
Looking forward to hearing your thoughts.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).