Type 1 Diabetes and Autism


It has been 3 years since Justin was diagnosed with Type 1 Diabetes.
He will have it for the rest of his life… there is no cure.
There’s nothing we could have done to prevent it, and it has nothing to do with his diet.

The few weeks leading up to his diagnosis was really confusing and kind of scary. We just thought he was sick. After diaper rashes that kept coming back that I couldn’t get to go away on my own, (plus weight-loss), we took him to the ER one weekend.

I got the medicine for the rash (pretty much the same thing I’d be using anyway). Then doctor casually mentioned that I should get his blood sugar checked the next time we take him to his pediatrician. He said that it wasn’t a rush or anything… that we didn’t want over-stimulate him (he has been one of the few ER doctors who understood Autism and was trying to be helpful). But whenever we could, to get it checked out when he started feeling better.

Well by the time I got home, I was more worried about his blood sugar than about him being overwhelmed and took him the next day.
They did a blood sugar check and it was so bad that the machine just said “High”.
It didn’t even give us a number just “high”.
The doctor said that considering, I caught it early… but it could have gotten so much worse had waited too much longer.

We went straight from the Pediatrician to the Driscoll Children’s Hospital two hours away. We didn’t get a chance to pack or prepare… and their Dad had to stay home to take care of Tyler.
So for three days it was just me and Justin.
Thankfully he was able to stop back up once with some provisions, but not nearly as much as we needed.

Being away from home… away from his safe space, his routine, not understanding what was going on, where he was, or why he couldn’t leave was so hard on him. He kept grabbing his shoes and taking me to the door trying to leave. His receptive language was even worse than it is now. So I couldn’t explain anything. He’d just look up at me with pleading eyes… begging me to take him home.

The IV was the worst part. He had to be on an anti-anxiety medicine just to get it in and once it wore off he kept trying to rip it back out. The doctor wouldn’t give him any more to keep him calm (he was a few months shy from turning 5)

Thankfully I was able to talk the doctor into taking the IV out early and allowed me to get his fluids up with his sippy.

Getting him to eat there was ridiculous!
They don’t supply Gerber Lil Crunchies in hospitals and his food preferences were a lot worse then. He wouldn’t eat anything they offered him.

And while I’m trying to deal with a scared, overwhelmed and sick kid… I had to learn what the heck was happening to him and how to help him.
I crammed as much information as I possibly could within those three days. And MAN was there a lot of information.
Thankfully I caught on quick…
They said we could have stayed longer if I needed to… to help make sure I knew what I was doing… so that I was confident and didn’t have any concerns.

But I wanted to get Justin home… He didn’t want to be there. I couldn’t sleep anyway, so I spent all my down time (which wasn’t a lot) reading and memorizing what I needed to do and how to do it.

When we first got there, we had to have 3 to 5 nurses to hold him down just to check his blood sugar and administer his insulin. But by the end of the second day he was starting to get used to it. By the third day… as long as no one was holding him down, he was okay.

Since leaving the hospital 3 years ago (in August) has done absolutely amazing with it.
He hands me his little finger so I can check his blood sugar, he’ll even pick up his shirt so that I can give him his insulin.

Actually, checking his blood sugar and giving him his insulin is the easiest part of Justin having type 1 Diabetes.
He’s even started holding the monitor to help me. 🙂
I think he likes the routine of it.
He knows exactly what’s going to happen.
He’ll even open up the cabinet at lunch when he’s hungry because he knows he has to have it checked before he eats. 🙂

One of the hard parts was having to be so strict about it all.
I have to check it at least 3 times a day (4 hour increments) before every meal, they want us to do 4 times (once before bed), but I don’t want to wake him up just to check it.
I have to give him insulin after every meal and an extra one at bedtime (to help regulate his blood sugar through the night and throughout the day).

I have to keep track of everything he eats so I know how much insulin to give him… He can technically eat whatever he wants, i just have to give him enough insulin to cover it (his body stopped producing insulin, so I have to figure out how much he needs per how many carbs he has).

Technically, once his blood sugar is checked, he only has 30 minutes to eat. Then he gets his insulin. He’s “technically” allowed 5grams of carbs in between meals and he can’t eat half an hour before we check him at the next meal.

But with him being non-verbal, Autistic… That just doesn’t happen.
I can’t explain “you need to eat all your food in half an hour”… Or “I know you’re hungry, but this is all you can have until it’s lunch”.
So we’ve adjusted it to fit our needs.
And it’s been working great for us in the last 3 years… Until he started school and he HAD to follow those rules. It was hard at first, but he figured it out and is a rock star.

Another “rough area” is needing to bring all of his stuff with us if we plan on being out of the house close to a meal time. You should have seen some of the looks we’ve gotten when we go out to eat. After we are back in the car, I give Justin his insulin… Well until we moved to Texas, we were using syringes instead of the, much easier, insulin pen.
I can only imagine what people thought seeing me stick my son with a syringe! Thankfully the pen is much less obvious. Lol and so much easier to use.

The thing that’s really hit home more recently is knowing that even if Justin gets to the point where he could go off and live on his own… he still probably couldn’t, because of his diabetes. It’s almost guaranteeing that once his Dad and I die, he’ll have to go into assisted living. I’m not going to stop fighting for him, and helping him be the best possible version of himself… but it’s something I’ve realized in the last year.

And although it’s hard (on both of us)… And I HATE needles (still don’t like them… but I’ve gotten over sticking Justin with them) I can say one thing… If I had to pick a kid, I’d rather it be my chillaxed Justin, who actually eats more than 5 things (aren’t all carbs) and has a higher pain tolerance.
If this was Tyler or Jaxson who had Type 1 Diabetes… It’d be soooo much more difficult!



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