Until recently, we didn’t have any specialist equipment for Aiden, aside for a few foam blocks and a peanut ball that I ordered when he was diagnosed. But all that changed a month ago, and suddenly we are into a new phase with various aids in attendance.
Firstly, we started using a soft splint on Aiden’s left leg while he is sleeping. This limb is almost always bent, and subsequently the hamstring was starting to contract and get very tight. After 3 weeks of use, we can see a big difference in the muscle tone, and in the past few days, I’ve even caught Aiden sitting with both legs straight out in front of him – something he couldn’t manage previously.
Then we have what we call Aidy’s lion claws. These are two pieces of foam, cut into long fingers – sort of like the toe separators one uses when painting one’s toe nails, only the foam fingers reach up to his ankles. We put the foam between each toe, then pull the fingers up so his toes are straight, and tape the foam around his ankles. This prevents his toes curling over too much. It looks very odd, but is only a temporary measure until he’s old enough for AFOs (ankle foot orthosis), which are orthotics that will do the same thing and support his ankles too. (Just talking about AFOs is another indication of the new phase we’re in.)
Then last week, Aiden tried a walker for the first time. He fairly instinctively knew how to hold on to it, and by the end of his physio session was doing so all by himself. His balance isn’t quite there yet, and he’s struggling to figure out this shoe business, but we’ve started the process to get him walking which is really exciting. (The physio has warned me though, that it will probably be a 4-6 month period before we get it right, so that’s what we’re mentally prepared for.)
The most recent acquisition is a standing frame (like the walker we’re borrowing it from the physio). A big source of frustration for Aiden is not being able to see what’s happening on the kitchen counters. Cameron pulls up a chair and often gives me a hand, which leaves Aiden tugging on my leg asking to be picked up. Once I do, it’s almost impossible to carry on with what I was busy with. Now, with the standing frame, Aiden is at counter height too! We’ve only had that for three days and already it’s changed life substantially and eliminated a lot of crying and frustration.
I took a bit of strain entering this new phase. Up until now, people haven’t been able to tell that Aiden has any challenges unless I tell them that he does. I’ve been very honest about it, but the conversation has always been in my control. Now, with equipment that very obviously states that there’s a problem, the dynamic has changed. People jump to their own conclusions and make their own assumptions, and I need to react to those instead. It’s also a bit of reality check. As much as I have accepted Aiden’s diagnosis, when faced with tangible evidence of it, it’s as if reality slaps me through the face afresh.
But although we’re only at the beginning of this new phase, I can already see the benefit these devices have brought. And anything that makes life easier, and helps us move forward, is welcome. So we’ll embrace this new season. Whatever it takes, right?