It’s been just over three weeks since we acquired some prosthetics!
Figured I’d write a little progress update, any advice, guidance etc you may have after reading will be greatly appreciated.
Intro: Armi is his opposition plate, it looks like a tongue so obviously I had to put eyes on it to make it more welcoming and like a face. I’d judge anyone who wouldn’t do this to be honest!!!
Purpose: To encourage movement in his wrist. He has slight movement in his wrist and the idea is he can put things in between his arm and tongue plate which will encourage him to bend his wrist to grip onto the item.
Progress: Doesn’t like it. He finds it extremely uncomfortable to have items in there so nothing stays in for long. He is too young to understand its use and understand experimenting with it. As he gets older and he is practising things like scissor control it could be useful as he could put a piece of paper in there, hold it and lift it up. Definitely think that this is something that will grow in usefulness over the years but at the current stage it isn’t quite right.
Intro: Handi is the cosmetic hand. It has soft bendable fingers and slots over his elbow, comes with an arm sock.
Purpose: Not sure.
Progress: From a practical completing task side of things it hinders him. My right hand man has slight movement in his wrist and in the two small bones that follow, and he uses that a lot to complete tasks. The hand stops those movements from happening so he can’t complete the tasks he has previously been able to do. He is a very independent and determined creature, so he isn’t a fan of having something that restricts him and weighs him down. The information sheet we had said it can help with equal muscle development, so we’re rebranding it as ‘Handi Exercise’, which means we try to get some exercise time with him wearing it each day, this could be playing an instrument, dancing, stretching and the like. Great idea in theory but recently it has become a struggle as he pulls the sock off before we’ve had chance to get the arm on, and then it triggers a tantrum. Today he kept it on for one whole action song, so that’s good. The childminder is having far more success, with up to 5 minutes of wear the other day, but even she finds he won’t even entertain the sock if he’s not in the mood for it. We really do struggle with Handi, emotionally we hate it we’d rather it didn’t actually look like a hand, practically it has reasonable exercise use but zero task use at present.
Intro: EazyHold’s are stretchy bands with holes at the end which you can slot over pens, spoons, bushes etc etc etc.
Purpose: To encourage movement with his left arm in tasks he doesn’t normally use it for e.g using a spoon to feed himself, colour with it etc.
Progress: LOVE IT! It’s easy, it holds so many items and he loves it far more than the others. Downside is that I ordered a size which he’s already grown out of so as it’s now tight he doesn’t like wearing it. Note to self: Need to order another. When it did fit he would eat a whole yogurt using the EazyHold with a spoon in it. He has also played a drum with the stick inside it. He didn’t quite engage with a crayon or paintbrush but that’s because he loves his way of doing those tasks at the moment and he’s too young to understand why we’re asking him to be different. I can really see this amazing tool being in our lives for many years, it’s brilliant. Need a UK stockist so we can buy loads! It’s an exciting product with so many uses. Looking forward to seeing what adventures it takes us on.
My right hand man has always been a child who hates anything restricting him, as a tiny baby this showed itself in a passionate dislike for being swaddled, put in a sling, a baby sleeping bag and car seat. Complete opposite to my daughter who loved all of the above. He has always liked to explore freely and in his own way, therefore it was always going to be a challenge, and part of finding what’s right for him is finding a whole lot of things that aren’t right. We keep reminding ourselves that just because something isn’t right for now doesn’t mean it never will be, we may return to items in the years because during that moment in time it’s perfect.
I feel like I’m fumbling around in sort of darkness with this parenting stuff and even more so with prosthetics.
My right hand man is a happy (albeit now a regular tantrumer), confident, fearless boy, his ability is plentiful, and that’s wonderful. This has been emotionally the most difficult period for Jon and I as parents because we’ve had to process a lot of negative feelings for these prosthetics in order to make sure we don’t let our feelings overshadow doing what’s right by our child. We’re getting there. It’s hard when you can see your child achieving every milestone, every task they desire to achieve and someone tells you that with this tool they could do it like a two handed person, which is “better”. He isn’t a two handed person, he’s a one handed person so why are we trying to make he be something he isn’t? Why can’t we encourage him to love who he is and let him find his way and if he’d like some tools along the way to assist with various tasks then that’s cool.
I’m small, and often I need a stool to reach things because this is a world designed for averaged height people. This is also a world designed for two handed people so my right hand man will need tools along the way, like I need my stool, but the prosthetics he has been given so far I struggle to see as a tool, it feels like a cover up. One day that might be what he wants, to cover his arm up, to look like the two handed world around him, and fair enough, because I want to keep that happy (but with less tantrums), confident, fearless boy and that’s part of the journeying with him and part of the fact that each prosthetic will have it’s own time and place. Ultimately my hope is that he becomes a person who loves him for the whole of who he is.
You are probably sensing that we are conflicted. The confused state that I talked about in my last post hasn’t shifted. I was waiting until we’d reached a more ‘sorted things out in our heads’ stage before blogging about our experience so far, but then I realised that this confusion is an important part of the journey and maybe you who are reading this have been here too, maybe you’re experiencing right now. If that’s the case then please feel free help and provide advice, guidance and support. You’re all awesome.
Will keep you posted on how we are getting on thank you for reading.