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!