There's a lot I need to fill you in on. I will. For now, I'll focus on today. We started Kellen on medication (after much hesitation) in the fall. We thought it was working, until it didn't. We switched gears and started a new one yesterday.
Points to think about:
I abhor the fact that we have to give him meds, but that's just it...we've absolutely reached the "have to".
I need the medicine to work. Oh God hear me, I really do. We lose him...he loses himself...it's painful on both sides.
The risk-benefit ratio is difficult to navigate based on those points.
With all of this in the balance, we still have to struggle with living in today's world.
Allow me to illustrate in A Tale of Two Starbucks Visits.
We've gotten into a routine every morning, and well, you know autism and routines. We drop off Larkin, we go through the Starbucks drive-thru, I drop off Kellen. For some reason, my Starbucks has become very crowded lately, so genius that I am, I decided that if the drive-thru is too long, I'll do mobile order from my phone, wait a couple of minutes, then take our time walking in. The first two times...cake. We walked in, juice box was already laid out for us, by the time he was drinking it, my latte was ready. The next time...not like that. My drink took way longer, he finished his juice, wanted another, line was way too long, plus my phone and wallet were in the car, drink was finally ready, tried to get to the car, then there it was...thermonuclear meltdown of a now very tall 7 year old right in front of the door.
I was completely focused on him. But I still see them. All of them. Staring at me. No one tried to hold the door. No one tried to hold my latte as I attempted to wrangle a kid half my size. No one asked if they could help.
But that's okay. I have lots of practice. I can do this, even when they look at me thinking "glad that isn't me".
Fast forward a few weeks...to today actually. Long line again, so we go in. His juice is ready. I give it to him, but he really wants to leave. I try to snuggle and squeeze him, telling him we're still waiting for my drink. We sit, and he crawls up in my lap in a weird balled up position. I can see people looking, wondering why such a big kid is snuggling in like a 2 year old. I didn't care. He was calm, and I love those snuggly moments.
Then he abruptly stood up, has a very loud burp (the kind that every mom recognizes), and projectile vomited in the middle of Starbucks. I immediately (as soon as I heard the burp actually), start ushering/carrying him to the patio door about 20 ft away...he puked twice more before we got there. Then he puked all over the patio, himself, and my sweater (and possibly my hair but we just ignored that the rest of the day). Turns out he doesn't have the "bend over and puke" quite down and "stand and maybe lean forward a little" is so not effective.
He stops puking as I'm rubbing his back and then starts to cry. I take off my sweater and use it as a towel. Just then one of the Starbucks guys comes out and asks if he can help. Then a woman comes with like 25 napkins, then a few moments later another woman comes with wet paper towels. Both were so appreciated. Another Starbucks guy asked again if we needed anything when we walked back in. They were already finishing the mop up. We had to go back in because I left my phone and keys behind when I tended to him.
In true me fashion, I walked back in and proclaimed "Do not panic, he's not contagious, just started a new medicine with nausea as a side effect...obviously."
I drove straight to his clinic and said "Help!" They knew it was the meds, so they changed him as soon as he got in. They asked if I was puked on, and if I was okay because they're awesome like that. He went off happy, already eating and drinking again. I drove off and laugh-cried.
Sometimes all we can do is cry. Sometimes all we can do is laugh.
So you know...I multi-task.
We'll be okay. I'm hopeful we'll be past the side effects tomorrow. I still hate that this is yet another challenge he has to face.
The Starbucks incidents were interesting in retrospect now. No one knew what to do when they saw an autism meltdown, but they did when they saw a puking kid.
All parents can relate to a puking kid...only a select few can relate to autism...especially severe autism.
People in general are inherently good. They can't help if they don't know how, they can't recognize the situation if they've never heard it described.
I NEED this world to understand us. We can handle it. We just need you to accept that we're doing the best we can.
So I'll try one more time. Back up. Fill you in.
Let you in.
Because if another me is at the tipping point and you offer to help, that matters. A small gesture by any of you could change that moment, that day, that week for someone who really needs it.
Tonight is better. We'll start again tomorrow stronger and ready to face whatever comes.
