As I write this, we’ve just come out of September. There were many back to school or first day photos in September. So so many.
We were also gearing up for a first day at nursery, possibly by the end of October. It was broached by our portage play therapist, knowing how I felt about being separated from Mikaere (which is no thank you never), and that at five, he was going to have to go to school (by law).
Knowing that it would take a long time for me to feel comfortable with Mikaere going somewhere outside my care, and into the care of strangers (especially when he’s on palliative care with a terminal disorder and every single day is precious), we went very very slowly.
Last year we visited schools. We talked about what some basic goals might look like, and what we’d be comfortable with. And then we went to the council and said, yes please. Please find us a place at this Lovely School here. That happened across months and months and months. It was very slow, and very gradual. Plenty of time for my mama heart to get accustomed to the idea of sending my baby to school.
Last week I hosted a group of professionals into my lounge where they presented an offer of placement: Five days a week, three hours a day between 12 – 3pm. His entire therapy caseload would be transferred to the school and how lovely was that?
Not lovely. Not lovely at all. I was shocked and made it clear that this package would not work for us for several reasons:
- Mikaere is on a feed between 12pm and 2pm. That’s two hours where he is in a chair, relatively upright and still, else vomits.
He typically sleeps from 2pm – 4pm, or has down time. He’s not typically very active in this time.
- Five days a week is too much. He’s very easily over stimulated, and without lots of down time to compensate, he tires quickly and has seizures. Obviously we want to avoid that.
- I’m not comfortable having his therapy transferred to school when I’m not there to oversee it. So much of what we do is lead by us, by me, because Mikaere’s well-being is so fluid. Seizures steal so much of his skill, so we’re can’t build on what he’s learnt week to week. One week he has full control of his limbs and his rolling. The next he’s floppy and can’t bend his elbow. The idea of not being there and things being missed without me to advocate for him (like I do now) is inconceivable. What’s more, if he’s meant to be having all this therapy when he’s on a feed or sleeping, he’ll never get the therapy he needs.
So no. It was not lovely, and I felt like this package had been designed by someone who did not know Mikaere, or his medical needs, and did not care. When I expressed all of this, it became clear it wasn’t the school setting it up, it was a council led, one size fits all special needs package. Have you ever heard anything so ridiculous – as if you could bundle the entire spectrum of special needs toddlers into one package. A package which does not suit Mikaere or me.
I was devastated you guys. Because right then my choices are put my son in a situation that I know will not work well and cause harm, or not have him go to nursery altogether and deprive him of lovely social interactions. That’s hard.
So I did what I always do when I’m faced with two unacceptable choices, which is accept neither and escalate. I asked for a few months leeway to review, and I wanted the name of the person at the council who works with Lovely School to arrange the packages so I could get one that works for us.
I think they were unprepared for me to do that. But you guys, I’m so tired of fighting.
I feel like I’m fighting every corner, for more for better for Mikaere. There is no part of his care that just works for him, no service that ‘just works’ like it’s meant to to meet his needs. (Just as a side note: I’m still trying to manage home visits from our gp, and his neurodisability service is in severe crisis to the point where they can’t offer prescriptions for medications he needs to keep him out of a coma. I’m fighting for the very basics of his medical care, so I’m not exaggerating when I say there isn’t a single part of his care that isn’t being fought for).
I’m so tired. The idea of gearing up for another fight against another immovable entity, another faceless group who doesn’t acknowledge my capability, my knowledge or expertise, who sees me as just another ‘hysterical mum’ – it’s exhausting and I haven’t even started yet. But I will. I will put my head down and provide paperwork and research and requirements and laws. I will escalate higher and higher up the ranks until it’s acknowledged that a one size fits all package is not appropriate for all children. That it’s not appropriate for my son, and that is unacceptable.
I will fight this fight, this extra fight in this extra corner, because I love my son, and he deserves the very best quality life I can wrangle for him.
So, off we go. Battle armour on. I can do this.