Mikaere has outgrown his tumbleform – it’s a special blue that reclines. It looks like a kids chair, and it’s wonderfully blue. The tumbleform looks fairly innocuous. It’s like a bigger version of a bumbo. Something that wouldn’t look out of place in a home with children. It looks like this:
Technically he still fits in it. The problem is that he’s so wriggly, he throws himself out of it. By that I means he throws his head forward, waves his arms about and his top half topples forward. He doesn’t have the tone to pull his top half back and once gravity has hold his head continues, his shoulders and torso follow over the side of the chair and he’s lying crumpled face down on the floor. (Sidenote: I have only allowed him to fall out of his chair once. I wanted to know if he knew there was an unpleasant consequence whether he would do it again. No such luck. I put him back in the chair and immediately he threw his head forward headed for the floor).
The tumbleform was no longer safe. (Second Sidenote: yes we have straps. They’re not particularly comfortable and squawks like a banshee until the straps are off. It’s a rubbish experience for everyone).
Not having safe and confortable seating is a problem. Kai spends so much time on his back and unless he’s being held or doing physio he’s not upright. Which means unless I’m holding him he’s supine. Booo! So we talked to our OT (which was such a mission because she was ill and away frequently) and eventually, with much emailing and quiet advocating we got a chair.
I was pretty shocked when I saw it.
This chair looks like a giant piece of medical equipment. And sure, it goes up and down and has wheels and a tray and all the fancy medical support you could want. Except that it is intimidating af (despite the bee on the side). And I know, I know we already have the oxygen tanks and stat monitors and suction machines and all the syringes and medication… but you can hide those away in drawers, cupboards or spare rooms.
This giant piece of medial equipment would be living in our lounge. It outted us as a special needs family. It feels like one small step away from a wheelchair. Emotionally it’s a bit of an adjustment. But if I latch on to the idea that it’s good Mikaere, if it’s good for him my fear and grief about being further away for the neurotypical path can get on board with what we’re doing.
So. Kai has a bee chair.
It’s not perfect, and it’s fiddly to set up and his chin is almost always on his chest… but he’s sitting. Supported and safe. The hydraulics mean he can be at standing height, table height or on the floor. The wheels mean he’s easy to move about the flat (and to wheel out of the way when he’s not in it). It’s also been good for dancing in the kitchen.
The best bit is having him at the table with us at mealtimes. That little tidbit has been the nicest. He’s tolerating it better and better. It’s not perfect (trying to figure out a way to keep his chin off his chest without tying his head back is a problem I haven’t yet solved) but it’s better than lying supine many hours of the day.
So. Our first piece of giant obnoxious medical equipment. We have it.