Hug your loved ones today, okay? Yesterday we went to a pub lunch by the river, cause the sun was out and we had some time. It was glorious and this guy was so happy to be out. It felt like we were memory making. I’m holding so tight to this picture with his grin and the joy.
Today Mikaere’s not 100%, there aren’t any smiles and I’m leaving him with Sam and his grandma so I can go say goodbye to another wee NKH Bee who has gained her angel wings. As a friend said, there’s another star in the sky tonight. She’s joining a constellation of NKH kids, which is just…
NKH is so rough. On our little bees, on us, on families and communities and just, hug your loved ones, okay?
As Mikaere gets older, there are an untold number of things that need managing. All sorts of things, usually as a result of something caused by NKH.
One of the recentish things that has come up is that his thumbs abduct. Essentially, it means that his thumbs cross inside his palms, making them useless for any kind of functional work (like grasping). This is partly because of the way his muscles work (as a result of his deteriorating CNS thanks to NKH).
The OT pushed for neoprene splints, but they’re heavy and make his wee hands sweat (and then the splints smell and it’s gross). It’s a whole thing.
So, we sought different advice and are using kinseo tape to achieve the same thing. Honestly, I don’t know why more therapists don’t use it. It’s significantly cheaper than a splint, more comfortable and more versatile.
I am frustrated that it’s a solution we had to seek out ourselves (our OT service was very clear about how they don’t have training on kinseo tape, and wouldn’t be willing to get training, but it “appeared” to work for Mikaere’s thumb abduction, so they would “monitor” things. Eye roll. They also didn’t have an alternative to splints, so 🤷🏻♀️).
Hey ho. It’s a solution that works for us, and I’m pretty pleased to have an alternative to splints (thank you Hayley!) Anyway, thumb tape. It’s a thing we’re doing 🙌
This kid came back from school yesterday with a crown he’d made. Very sweet (bar the nuances around the coronation). I’m grateful he’s engaged and happy at school, my mama heart! 💛
Earlier this week we did something I wasn’t sure we’d ever be able to do. We took Mikaere to a theme park and rode some rides. I mean, he can’t sit independently, so I’d written off any kind of theme park. It felt impossible. Would there be disabled facilities? Would Mikaere even enjoy it?
After much encouragement (<3 @project_gogo), we went to Chessington. We booked tickets for the week after school started on a day it was meant to rain (so it was mostly empty). They had a changing places facility and we signed up for the Ride Access Pass (which meant we could wait in the just-us disabled queue). We worked out which rides that Mikaere might be able to go on (they have a great accessibility PDF) and there were maybe 5 or so rides we thought he might be able to go on.
Mikaere wasn’t having the best day, so we limited ourselves to two rides: Elmer’s Flying Jumbos, and the Sea Dragons. Elmer’s didn’t quite live up to our hopes, Mikaere was very much in the “wtf is going on” camp. On the other hand, the Sea Dragons (which was significantly more roomy) was a huge hit, with many smiles.
The bonus was they also had an aquarium + a zoo! We did the Monkey Walk (a tiny path in the Marmoset enclosure so they can get fairly close if they choose to) which was lovely! Because it was just us, we had the opportunity to stop + Mikaere was very curious!
It didn’t feel like a washout day, knowing he could only go on a handful of rides, thanks to both the aquarium and the zoo (which is good, cause even though you can get a carers ticket free, it was expensive). It was a lot of work + prep to get us there, but we did it.
It did feel a bit bittersweet. He can only go on these rides while he’s small enough to be lifted, while he’s portable (he’s significantly less portable than he was). Once he’s too heavy this will be one of those things we can’t do. Which, womp. Because where are the rides you can get a wheelchair on? If you can strap a wheelchair down in a taxi, surely you can manage it on a ride?
Still, it felt like a win. Like we were making memories + being adventurous. It was a good day!
Independent plaaaaaaay, we’re doing it! There is very little opportunity for Mikaere to play by himself, so when we find something that works for us, we’re in! It’s always fun finding new ways to play with your current kit. We’ve had these fibre optic lights for a while, and stringing them up to the hoist was such a win. Whatever works, hey?
We took Mikaere on the river boat the other night, on what was meant to be a pre dinner walk and ended up being an impromptu trip down the Thames.
To be honest, he couldn’t have cared less, but we had a great time. I’m glad both piers were accessible, but the boats, not so much.
Wheelchair users aren’t allowed to sit outside like everyone else (wtf), and on the first ferry there was a tiny alcove we could slot Mikaere’s wheelchair into, but on the return trip there was no designated wheelchair area. There was an open seating area kind of out of the way at the front, but we had to ask a gentleman to move as there wasn’t enough space for us and him (which was awkward).
I mean, it’s like they did a half job thinking through accessibility. How to get on, but not how disabled people were going to manage once on the boat.
Anyway, casual ableism aside, it felt like exploring our own neighbourhood, which was well good!
Yesterday we met some friends of ours outside, in a local park. We’re widening our bubble slightly, which has been so good for us and for Mikaere.
Anyway, the highlight for our guy definitely was meeting Pepper, who is JUST the sweetest wee thing! She’s very soft and was happy to have some pats. Mikaere was very curious and there was a lot of smiles and signing more, so that was very sweet.
We’re holding tight to the teeny tiny moments of joy right now, and it’s a very intentional thing. What will bring Mikaere joy today? What is going to make his day a good one? What are we going to do? I’m glad that yesterday it was friends and doggie love and walks outside.
Getting out can be a huge faff. Sometimes we don’t manage it at all and Mikaere can spend days inside without leaving. Part of that is we have a limited amount of awake time to work with, which can be taken up by therapy. Sometimes he’s not up for it, sometimes there is too much going on and his nurse isn’t confident enough it take him out without us, and sometimes it’s just too dang hard to manage.
Which is just, a bit shit. It’s a bit shit. Cue Mama guilt because I really want to manage this, so he can go outside and enjoy not being in the same space for days on end. Life has gotten significantly harder now Mikaere isn’t a small, portable wee toddler. There’s a lot of prep work trying to figure out if a place has accessible paths or accessible door frames or step free access. Are we going to be out long enough that he’ll need changing? Is there a changing places facility where we can change him? It feels like a constant negotiation with the world, and a fight with the emotional/mental effort capacity that we have.
But is also means when we finally do go out (often somewhere local and accessible that we know) it feels like a win. It feels like a HUGE win! Because we want him to be able to enjoy all the things. But also, I hate that it’s like this. I hate that it’s hard.
Anyway. We made it out. We fed the birds leftover bread and hoofuckingrah! We did it!
Todays adventure: we spent this morning at @wwtlondon. Their playground isn’t even remotely disabled child friendly or accessible – disabled kids like to play too, you know (though we got a bit fast and loose, pulling Mikaere out of his buggy and onto a mat so he could go down the slide). Also, there was no changing places facility (which 🙄😭).
Still, it was nice to be outside. We listened to the wind in the reeds and sound of the ducks, he held his hand out and got splashed in the splash pad.
We did our best to make it work, is what I’m saying. We made it out, we’re adventuring!
Following up on yesterdays sensory win, here we are today with HATS! (Yes, we’re all very fancy. It’s not like we don’t have an entire room full with expensive sensory equipment 🙄).
But you know what? Mikaere loved this morning. Dressing up with beads and hats and “kings shawl”, looking in the mirror, us making a big fuss – it was magic with many smiles and lots of delight.
Physio is not fun. Being forced into positions and moved about and not having a choice in what is happening to your body – that is not fun. Stretches can hurt, and Mikaere isn’t able to negotiate or talk back or even say that hurts, I’ve had enough, or any of those things you and I have the option to say. There’s no autonomy for him. No independence. We watch him closely to try read his body language and facial expressions, but that’s not the same. It’s not even always accurate (could you imagine getting through the day just communicating with facial expressions? How well would you be understood, do you think?)
And so we try to make physio fun. We try. It’s not always successful. He’s not always keen to have bells shaken in his face, or bang the drums or whatever. It was nice today to change it up, to do something different and joyful.
And I forget that it doesn’t have to be fancy. Some beads, an old hat, a piece of large fabric and a mirror, that’s what worked today.
So, hurrah for hats! What magic sensory tricks are you guys using right now? Share your tips and tricks with me, so I can try them with Mikaere?
