It’s been 10 months since Boo got his standing frame. We were told that by the age of 2 he needed to be in it for up to 2 hours a day to promote bone density and good hip placement. He now attends a hip placement clinic, and although his hip alignment isn’t perfect, it’s very good considering the nature of his cerebral palsy. They don’t want to see him again for a year. Phew.
Now, ssshhh, some of Boo’s therapists might be listening. We don’t often manage two hours of daily standing frame time. Two hours of restrained standing is hardly an inviting prospect, even to a largely immobile 2-year-old, but we manage about 45 minute to 1.5 hours daily.
And we’re lucky. Boo loves seeing the world upright. In fact, he has from the start, as this post (featuring a much smaller, but still smiley Boo shows). The trick has been to find things to entertain when he is braced into the frame. Boo’s Leckey stander fortunately has a bowl under the table (the top of which is just velcroed on – oh how we rely on velcro in this SEN life) and we try to fill it with lots of interesting things. Shaving foam is good (but better at nursery, as far as I’m concerned) as is water or, perennial favourite: dried pasta.
Witness our dining room 3 hours ago…
Walkers are potentially much more fun, though. Movement and standing? 2 for the price of 1! But Boo’s walker is an ancient one from the hospital that doesn’t work properly. We are being loaned it until a new one can be bought (just got panel approval, but it has taken ages, and for the past few months, we have had to grapple with a broken gait trainer and wheels that won’t stay locked. In other words, it’s useless.
And then something fabulous arrived in our lives. The Upsee!
You’ll know all about the Upsee. Even people who know diddly squat about disability couldn’t help being totally captivated by the amazing pictures in the papers or Youtube videos of kids who can’t walk unaided, stand or even sit without support walking on the beach or down the aisle.
We tried an Upsee at Kidz South a little over a month ago and both of us loved it. Just loved it. Initial set up takes a while (you have to get it right) but gosh, it’s worth it and never as much trouble again.
Boo loved it from the minute he got in it. He was upright and he could move without holding on to anything or having to contend with wonky wheels and NHS austerity. We stood and we walked. After a minute or so, I could even feel Boo lifting his right leg himself to initiate stepping. I was not going to be wholly in charge of this thing. That was clear.
And that’s what it’s all about, isn’t it? As Boo gets older, I am becoming painfully aware of how easily life can become something that happens to him rather than being initiated by him. He has appointments (lots of them) at set times. We can’t control the number or timing of them. He has to endure endless hours of therapies where the goal is to do what someone tells you.
Just because a child has disabilities doesn’t mean that stop being a kid. And they should be expected to act like one. Have their own agenda. Do their own thing.
OK, Boo can only go where I go to in the Upsee, but he is in front, taking the lead, literally and metaphorically. I can’t tell you what that means to me. Or Boo. I wish I could show you how much he loves it, but I’d have to break my self-imposed picture/video ban to do so. So I had to get creative.
This is Boo (sporting his new hair cut) playing his first ever game of football with his sister in our garden. He had never even stood in our garden before. What a moment!
The only thing that held Boo back that day was my incompetence in kicking. His CP, all his physical challenges were secondary.
OK, Boo, I’m following your lead. I can’t wait to see where the Upsee takes us next.