Yesterday, at 2:58 pm, Ryan and I left the apartment for therapy, which (presumably, but more on that later) started at 3:00. We were going to be late. We were going to be late because Ryan had gotten himself ready to go, and he was wearing a blue tank top, black shorts (as opposed to the blue ones which nicely matched the tank), inside out with both pockets blowing in the breeze, his sandals on the wrong (filthy) feet. We were going to be late because “YOU CAN’T GO OUT LOOKING LIKE THAT, RYAN!!! FIX YOUR SHORTS AND PUT YOUR SHOES ON THE RIGHT FEET!” (He knows which way they go. You can’t not know and choose wrong 100% of the time. He wears the damn shoes how they feel “right” to him…his feet, and I legitimately don’t know how HIS feet feel in shoes.)
Ryan said no. He didn’t WANT to go to therapy at all, but he had gotten himself ready anyway. I had a choice to make. Were we going to therapy, or were we going to stand in the living room and argue about clothes? Well, let me tell you, after arguing a bit, I gave up and we went to therapy. We went with his pockets inside out looking like handlebars on his butt. We went with shoes on the wrong feet. We went wearing clothes that didn’t match.
This morning on Facebook, I saw and shared a post about this exact subject. It inspired me to write this one. You see, as children grow, we want them to be independent. We want them to begin to make choices. To be able to express themselves. Shawn is 18. His choices are things like college choices, drugs and alcohol, safe sex. Big decisions facing that kid. Ryan, on the other hand, Down Syndrome, Two time Leukemia Survivor, complex medical needs and a developmental disability, he doesn’t get many choices. He HAS to go to doctor appointments. He HAS to take his meds, get the shots, have the procedures. Worse than that, he has to do it when I say. With Shawn, I can ask him if this or that day for this or that works for him. He gets to say yes or no. He gets to refuse to go at all. If Shawn is hungry or thirsty, he can (not that he does, but he COULD) get his own snack or drink. Ryan can’t do that. Can’t, and is also not allowed. But guess what? Children who have no control over their lives ACT OUT, and they find ways to take control. Let me tell you about yesterday.
Ryan had an allergy skin test scheduled for 9:30 yesterday morning, which meant that his antihistamines have been held for a few days, some of his other meds had been rearranged to compensate, and a steroid burst had been added. But our day had started earlier than that. Around 5, Ryan woke up and couldn’t find Snakie. I refused to get up and help look, because “I TOLD YOU LAST NIGHT THAT IF YOU TOOK THAT SNAKE TO BED WITH YOU AND HE GOT LOST IN THE NIGHT I WAS NOT GETTING UP AT DARK O’CLOCK TO LOOK FOR HIM!” So then Ryan tried to get in bed with me to snuggle. But it’s HOT, y’all, and I’m menopausal, so I hollered at him to get back in his own bed. Around 8, when I woke up, he was sound asleep in his own bed, wrapped in a sheet. Guess what I did next? “TIME TO GET UP, RYAN. WE NEED TO GET UP RIGHT NOW. WE HAVE A DR APPOINTMENT. GET UP. WEAR THESE CLOTHES. EAT THIS FOOD. TAKE THESE MEDS. RIGHT NOW. GET A MOVE ON!!!”
Ryan didn’t want to go to the doctor, and he didn’t even KNOW about the skin test. But off we went, ZERO choices given. Got there for him to find out he was getting stuck with basically 20 needles, all at once, which made his back itchy and he couldn’t put his blanket over his shoulders to comfort himself. He couldn’t itch at it. He couldn’t lay on his back. Finally time was up, and they wiped him off and put cream on it. We went home. I had a to-do list of 11 things, some on the phone and some I had to actually go do. Shawn and his girlfriend were hanging out here, and if I don’t watch him, he will bother them all day. What ensued then, following him being allowed to hang out for a few minutes, was 3 hours of me trying to do phone work and at the same time keeping Ryan from pestering Shawn. It was a mess. I had planned on being able to run the errands between 3 and 5, while he was at therapy, so at 2:30, I told him to get dressed (like I said, it’s freaking HOT, so all he had been wearing was his tank and underwear), and I set about getting myself ready. When I emerged and looked at him, he had handlebars on his butt.
We got to therapy, only to find out that yesterday was not his counseling day (I still don’t understand how I had that wrong), so that meant he was going to have to LEAVE a place he didn’t want to be in the first place (and come back at 4) but since he was THERE, he wanted to STAY, to go run at least ONE of the errands. So we went, and then I told him he had to go BACK. After therapy I picked him up to go get ready for Bible School. He’d been waiting all day to go sing songs, so this was an easier transition. I got him into the “right” shorts, right side out, but he still insisted on sandals on the wrong feet. I gave in on it.
Got to Bible School, only to find that there was to be no singing. But guess what? You don’t get to do what YOU want, Ryan, but here. Eat this food. Do THESE activities. Sit in THIS chair. Behavior disintegrated as I sat and watched.
We got home, and his phone died. That was it. Game over. Complete meltdown. 45 minutes of crying total. A whole day of being told what to do. A whole day of no choices. Of being managed, and of literally NO REWARD.
Shawn was finally able to quiet him. Finally he slept.
Today, I asked him what he wanted for breakfast. Asked if he wanted strawberries or bananas in his cereal. Asked which shoes he wanted for therapy. Let him choose which blanket, which snake, which device. I chose his clothes. Told him we had to go to therapy, but he could choose which car. And as we walked out the door for therapy, on time, in the clothes I chose, I noticed that……
his sandals were on the wrong feet.
I, and he, have bigger battles. He has battled Leukemia twice and beat it back. He battles a developmental delay that will never go away. He battles late chemo effects, some of which include sensory processing issues. His choices are limited.
So guess what. If you see my kid ANYWHERE wearing his headphones, watching YouTube on his phone, with handlebars on his butt and holes in his shirt where tags were ripped out and his sandals on the wrong feet, leave him the hell alone, and don’t judge either of us. We are busy slaying monsters, and I AM THE ONE WHO LET HIM OUT LOOKING LIKE THAT.
If you see him appropriately dressed, minus the headphones, wearing shoes that tie, minus his fuzzy blanket, you can probably safely assume that I have evaluated the day and judged it safe to impose my choices, the ones society considers “appropriate”. Chalk one up for me, but don’t be deceived…the “stuff” is close by, because triggers happen in life.