AS, High Support Needs Autism, and the OT

Ankylosing spondylitis won straight out the bat when I got to the OT’s home where her practice room is. The room is up a steep set of steps. Each step extremely tall so you have to take a big step. That .. was.. torture … Just driving there and climbing up the stairs made my leg and pelvic area scream, “Are you serious!? Don’t you love us? Why are you torturing us?” I almost fell. My legs can’t take my full weight when shifting onto one at a time. They just wanted to collapse.

Then I sat with the stair pain. And the OTHER hip that had not complained about the stairs and driving decided it wanted in and kept interrupting my mind, “Haha, you have AS! You’ve got burning pain. Do you feel me burning you?” So I sat on one buttock. Didn’t help much, the leg was still bent.

The OT herself is lovely. Belinda von Wieligh. Her room is small, which is perfect for my girl who doesn’t really like wide open spaces. BUT, therapy (DIR floortime method) would NEED me and dad, or at worst, me, present the entire time, every session. Doing things while she watches and directs and if my girl goes to her, then I watch and take part and the best would be if she wanted us all to take part.

Nope.

My rheumatologist doesn’t even want me teaching and neither do I, as you know. I’m just teaching because I have no choice. I’ve implemented some DIR floortime tips and they are too difficult. Too heavy on my body. No way I could drive there, climb the steps and THEN have to do it all in one session. My rheumatologist herself would murder me! If she is so desperate that I stop reaching that she looks for schools and talks to teachers for my children, there’s no way she’d rejoice that I’m punishing my body.

Dad? He does NOT take directions kindly. So he’d be a bad client. And he said so himself. She said she’d tell you stuff via voice note after the session like, “ Oh, when she hit you, you didn’t realise she’d wanted the other blue thing when she pulled you to the red one.”

So, I’ll stick to the usual plan. Try fit in the method here and there and get her dad to do it. One was to do something they like and get them to communicate. So, I would pick her up and say “Up!” And then put her down and say, “Down!” And continue for a while then suddenly stop. And as expected, she then said, “Up!”

Below, she took the chairs from around the dining table and put them together and then pushed us all to fill every available chair. No leaving! No toilet! The girls eventually got bored so I started singing, “ If you’re happy and you know it” and she clapped and stamped her feet a few times. To which her twin shouted, “Oh. She’s making a nice show for us!” Whatever you want it to be! If you feel you’re at a concert, all good.🤣

Communication. I explained how she wants to speak. But speaking is hard. Floortime wants you to meet the child where they are then try get more out of them than what they currently give. I did that on Thursday without hurting myself as much as I would in an OT session (The rheumatologist seriously sat there and asked if there’s anything else I’m lifting after I promised her I do NOT bath any child. My back is bad. It scares me.) She wanted yoghurt. Pulled me to the fridge to open it. I labeled each item except for the yoghurt. My back was becoming sore and she needed me to get it as it was on a high shelf. She just kept silently pulling my hand up. I started getting scared she would end up screaming in sadness and frustration and almost, almost got the yoghurt for her. But then, as I was standing there and the fridge kept making its warning sound that the door had been open for too long, she finally said, “Yor-gut.” Whew! It was traumatic. I can’t do that over and over. Showing me is a valid form of communication. BUT there are things she can’t SHOW. And she only wants to talk. No pointing at pictures, no even looking at pictures. And that’s the sad thing. Her words mostly come out when she’s feeling strong emotion. So it HAD to build to a level where she was getting frustrated. I am hoping one day things are better. Less strain needed. It’s too hard on my Mommy Heart.

I also hope that one day she will understand what pain or sore or ouch or owie means so she can then gesture yes somehow. For now, we have to keep guessing why she’s upset, crying more, unhappy, restless …

I’m sad I physically can’t do OT. But I have the textbook. You can buy the videos and learn. They’re just expensive. But hey. Such is life. Never will everything move smoothly no matter who you are. This is just one of my rough and permanent patches.

Shabbat shalom. If you’re having a ‘Sabbath,’ enjoy the rest and peace in worship. I’m hiding in the toilet. 😅