I just got a call from the early years head teacher with an update. Internally, they’ve discussed Mikaere’s case, have gone to the local authority to say the package isn’t right for him and they’ve suggested we appeal to the Complex Needs Panel.
Okay, this blew my mind, because we’re talking about a special needs school, in an early years class of special needs toddlers who have very similar physical and cognitive abilities as Mikaere. What kind of complex needs does my son have that these kids don’t that requires he goes to a special panel?
And then it clicked. He’s on palliative care. That’s why. My son has a terminal disorder, and that’s why we’re jumping through extra hoops. There is no one else in the class who is on palliative. Just us.
So now we’re going to an extra panel, to ask for one to one care in case Mikaere has a seizure at nursery. I worry about this, because the first panel, without us, allocated a package that wasn’t suitable.
Truth: I’m intimidated by a room full of strangers that I don’t know, making decisions about our life. I fear they’re going to say no. That the answer will be no and our Lovely School will feel like they can’t safely provide care for him and we won’t have the opportunity.
I’m scared that in advocating for him I’ve ruined his chance to go to nursery. I wonder if I hadn’t made a fuss, if he would have been alright going five days a week (I don’t think so, but I do wonder). I wonder if I’ve done him a disservice, by fighting for more, for better. For safe care.
Sigh. I don’t know. We’ll see. We wait to hear from the complex needs panel. Another group of people we don’t know, making decisions that will have huge impact on our lives.
Fingers crossed for positive news.
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PS – If you’re thinking of signing up to the Chicken Nugget Challenge, get involved! We’re looking for more team members! www.teammikaere.com/chicken-nugget-challenge
