On School Transitions

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One of the changes that happens now is Mikaere’s therapy is done at school. Where I am not, which means I can’t be there to advocate for him. This here is Mikaere in his stander at school. This is not the stander we trialled at home. It doesn’t have head support he needs, or support behind his elbows. You can see how his chin tilts up, which is problem, because then secretions pool in the back of his throat which means more gagging and vomits and breathing difficulties. I can’t see where the strap is, in regards to his tube – is it rubbing? Is it accessible? I can’t see how he’s moving in it. Is he comfortable? Is he extending against the straps? Is anything rubbing? How is his feet? Are they turned out? I can see it’s not the superman pose we set up at home (because it’s better for hip abduction). And I’m so frustrated. So frustrated that this was done without me.

Because of course it’s now all going to be done without me. He’s at school now. I’ve been told repeatedly that his independence is important, for us and for him, and that letting him have that is necessary.

The tug here is that I genuinely feel like no matter how great his team is (and they are great), they are not as great as me. They don’t know him as well, they don’t know about NKH as well as I do, they’re not able to anticipate like I do, and they are not his parents.

There is also this frustration that if his time is limited, he’s spending it with people who aren’t his family. With people who aren’t US. They are getting all his awake moments, all the beautiful interaction and fun. And we get the tired Mikaere, who is so exhausted after school that he sleeps.

I’m struggling with this transition. There are (obviously) benefits (for us and him) that he goes to school and we get daily respite, but it’s not a black and white situation. I don’t know how to advocate for him when I can’t see what is happening with him. I’m not the one making decisions for him, and I’m not the one ensuring that he’s getting the best out of his time there.

Instead my mama heart is trying to be okay with ‘good enough’. This stander is not the one that we trialled. It’s not set up the way that I would set it up, and it’s not as supportive as I would like. But. But he is standing, which is good for him. It’s good for his hips and muscles and digestion and I bet it feels really good.

I hate this. How do I advocate, and how do I settle for ‘good enough’ when for the past five years I have done everything in my power to ensure Mikaere has everything, and more that he needs?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disability #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #transitionToSchool #standingFrames #hateThis

On School

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One of things that has happened in the last little while is that Mikaere has started going to school a handful of mornings a week.

This is a huge change for everyone, and I desperately wish it hadn’t happened in covid times when weighing up risk and quality of life didn’t feel so dire. But, this has been in the works for 2.5 years, delayed in part by covid (in part by a really rubbish SNAS team – the special needs assessment service, I wish they would just used the word disabled, all children have needs, you know?)

So, knowing that the school gets it, they’re full of vulnerable children with complex medical needs too (some even more so than Mikaere), and there are risk assessments and policies in place – it’s possibly the safest place, other than home, he could be right now. Plus, he loves it.

Right now we’re working on building relationships, between them and us, so they can get to know Kai and his quirks.

Let’s be clear though, my mama heart hates this. After being told NKH is terminal and our days together are limited, and precious, the idea that he’s to spend HOURS away from me, from his family with people doing their jobs and not for love is just unfathomable. (Don’t get me wrong, I believe his team should be paid and they’re great and they do care about Mikaere, but let’s be honest, if anyone of them won the lottery, looking after my son at school is probably not going to be on their todo list).

On the other hand, I can’t give him the engagement at home, the variety or the social stimulation he can get at school. I don’t have the capacity, and I hate that too. I haven’t yet had to drop off and leave him. They’re allowing me to settle him (though it’s clear now, weeks after he’s started, that he’s fine without me).

But eventually, I’ll have to leave him there. Not looking forward to that day. So, rock and a hard place. Knowing something is what it is, and wishing it wasn’t, well, that’s a familiar spot to be in.

Hey ho, onwards we go. School. It’s happening.


On Fighting for Nursery

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Well blow me over with a feather. After that initial post on nursery, I got a call from the early years teacher at Lovely School.

Here is what she said:

  • the offered package is not right for Mikaere. They can see that, and yes, it’s very clear to them that it wouldn’t be appropriate to put him in that package.
  • There aren’t very many children like Mikaere who have come in to Lovely School (I took this to mean: pallative). Focus on quality time has to be paramount to his package, without causing any harm.
  • They had an internal meeting and agreed, that they should go back to the council and advocate for Mikaere and other kids like him.

Ahhhh. I literally cried, big fat tears rolling down my cheeks. I had been HEARD! It’s so so rare that I’m heard, that what I say is given weight and considered.

I guess it helped that I piled them with paperwork and evidence before they left. With emergency care plans and seizure plans and symptom care plans and respiratory care plans. With his ambulance directive and his cheat sheets and medication lists and schedules and doctor contact lists. I saw that they were a bit shocked at the sheer amount of paperwork in our emergency kit (it’s the stuff we take everywhere with us). Apparently not all parents provide folders of paperwork at the first meeting.  But if they want a full picture of his needs, they need all of this. I’m grateful that I had documentation to support my previous concerns. Would they have listened to me if I hadn’t provided them?

Still, what matters is that I was heard. That’s huge.

Also, the relief that someone else was going to do the fighting was huge. I don’t have to gear up to go fight the immovable bureaucratic council and explain why my boy is more than a budget item.

I mean, I absolutely will if I have to, but I’m already fighting so many other services and it’s hard constantly being in conflict. I’m running on empty and it’s hard.

That someone else is going to take this on? That’s everything.

When I asked what package they were advocating for, it was more along what I had envisaged, which is a few mornings a week, with a focus on settling into the new space and forming secure relationships with staff and peers. We want him to be happy, and safe, and engaged with play. It would also mean that therapy would be done outside of school, which was a comfort to me.

You guys. The sheer relief at being heard, at not being the one to go into battle, but that Mikaere was still being advocated for was overwhelming. Tears. So many tears. Can all services be like this please? Still. We’re only at the first step. We’ve got a few more months to shift the council’s rigid perspective, Mikaere’s school package hasn’t been agreed as yet. But I’m already in love with Lovely School. They listened, took it on board and are acting accordingly with genuinely what’s right, even if it’s against the grain.

Let’s hope the council can see it too.

I’m so hopeful you guys. Hopeful that something will come together and it won’t be me having to go into battle again. Fingers crossed!