Our Journey With ASD

Kiddoo understood that mommy needs to stay laying down until the phone sang a song at 6 during the school year. While technically awake at 4 or earlier, I at least convince him to play Legos or watch his iPad until 6. But today? Oy. We started “It’s time Mommy get up” at 4. Whining and crying when I told him no, but I still managed to stretch out my horizontal time, thank you Inside Out.

Thursdays are my usual shopping days, but between the whole “you can’t drive for 24 hours after sedation” thing and my mom going to my sister’s award banquet thingy, it got pushed back a day. Which meant we were out of Pop Tarts. And yogurt. You can see how this is a pretty big issue, yeah?

Now, one of Kiddoo’s wonderful sensory issues is that he cannot tolerate warm food. It has to be COMPLETELY cool, preferably cold, for him to even consider eating it. IE he has a meltdown when he sees me put his perfectly frozen pizza in the oven to cook it. But he LOVES to crack eggs, and “help” me fix them. So I figured that may help alleviate the coming meltdown.

All righty, so in my previous post, I mentioned that I had a colonoscopy today. And it was a stark reminder that I, too, am on the spectrum.

Both of the boys are medium to high support. They both needed speech therapies and were considered non-verbal. They both still have non-verbal days. I haven’t truly struggled with my own issues for a very long time.

I have a system with eye contact. Count to three, look away. Repeat. Once I get into the swing of this, I can actually listen and “maintain” eye contact at the same time. As far as socializing, I really don’t. I get on tumblr, and facebook. Nobody really notices if I have weeks of just sharing/reblogging without commenting. And most doctors and therapists are just used to me at this point. They ask simple questions, making sure they phrase it properly. Of course, most of the doctors and therapists work with kiddos like mine.

Today I had a nurse who was so incredibly sweet, and kind. But she was social. She wanted SO BAD to have a conversation with me. And my brain was like, “NO?” I tried. I interacted with her, thinking that my little tidbits would suffice. When I asked her what the sedative would feel like, she said it would burn a bit. I smiled (I think) and said “Oh, it can’t be worse than the benadryl.” My brain was proud. I had contributed to the conversation.

“What do you mean? What did benadryl do? Why did you need the benadryl?”

RED ALERT RED ALERT!!! “Uh, it just... It burned. Up into my heart. And it hurt.”

“Did you recover?”

“Um, yes. I did.” And that was it. I looked down at the counter, hoping it would stop.

She was trying to keep me calm. I know this. I understand and appreciate this. I really do. But dammit I sucked SO BAD at conversation.

She continued trying to talk to me after getting me into the bed. Asking what I did for work. I tried to keep my answers short, reminding myself that the whole talking thing wasn’t working today. And then I told her my kiddos were autistic, explaining that Kiddoo was very literal, meaning I had to be very careful of what I said.

“How do you mean?”

DAMMIT. Any other day, I’d have no less than 15 examples. The only one I had today was the time he got too close to the road, and we told him to stop and turn around. He spun around in circles, then continued on his way.

We've all heard it several times. “Make sure you take care of yourself.” It’s a pretty big rule of parenting, period. For special needs parents and caregivers, this goes so far beyond “taking time for yourself”, though. Some days, it means hauling your exhausted ass into the shower. Setting alarms to take your own medicines and vitamins. Eating, and sleeping when you can.

Sometimes, this means go to the fucking doctor.

I had a pretty serious reminder of this. My parents are my main support system when it comes to supervising the kiddos. So when my mom had to have back surgery which needed to put her out for at least six weeks, and my dad had to have two cancerous spots carved out of his scalp TWICE, my needs got pushed to the back burner. And by this, I mean I KNEW that their needs were pretty severe, so my stomach aches and diarrhea really weren’t that big of a deal. I didn’t even mention it, for the first two weeks.

And then I started bleeding. Ruh roh, Raggy. Never in my LIFE did I ever think I would use the phrase “please dear God let this be hemorrhoids.” And then the fatigue hit- the combination of borderline dehydration and blood loss took its toll. And still, all I could think about was how many doctor appointments this was going to be. How many hour fucking long appointments this was going to be, with tests that I would have to have my dad take off work for, and leave both boys with my mom WHO IS STILL RECOVERING FROM SURGERY, MIND. And the tests themselves, they were going to be nasty. And gnarly. I have taste and smell sensory issues myself, so any prep work was gonna be MISERABLE.

Needless to say, this shit did not go away on its own, and I was forced to make an appointment during the afternoon. When your doctor makes the specialist’s appointment for you and gets you in the next day, you have a fucking problem. When they skip the on site lab and send you to the hospital to get IMMEDIATE responses, YOU HAVE A PROBLEM. I lost eight pounds between the two appointments.

Luckily, the specialist kinda figured what I had, as my sister has ulcerative colitis. So I got to skip chugging the barium, having the EGD (the tube down the throat), and we got the colonoscopy done. Which found the ulcerative colitis.

Kiddoo needed a lot of support. He came home from school with a knot and carpet burn on his head from banging his head. His teachers said he shrieked, and threw toys and chairs, and refused to do anything he was told.

We had Speech today, and as soon as Kiddoo’s feet touched the ground of the parking lot, a fricking diesel train sounded its fricking horn less than 100 feet from us. So, yeah, it was a rough session, especially since she was running late.