Sometimes I wish I could drag individual members of staff around with me for a day or two, and subject them to my continual internal monologue revolving around appointments and medicines and letters and all the other boring repetitive minutiae involved with parenting a young person like Smiler. Maybe then they wouldn't be quite so cavalier about leaving Mr and I hanging for an entire morning. Maybe then they would realise when we say "we need to have this done by 12:30", we actually mean that this needs to be done by 12:30. We aren't being awkward, or picky, or dictatorial in any way, it's because we have reasons.
It's the ordinary, newly minted, year nine meningitis vaccine. To be done in school. We got the consent form, signed it, sent it back. The first school nurse asked me if Mr and I could come in when it was to be done, knowing that as cooperative as Smiler generally is, that this (along with nose bleeds, which she's seen) is likely to give her front row seats to the show of a whole nother side. She told us that without having us to 'help' (=hold him down) she didn't feel she could safely give him the vaccine. We were fine with this, we agreed that when he's anxious he can behave very unpredictably, and he could hurt someone (or himself), and that wasn't something anyone wanted to risk. No point in giving him any advance warning, as it would only stress him out and mean he was even more agitated when the time came, so we plotted exactly how it would go, who was holding which limb, and we were all set.
The appointed day dawned. Smiler's special school shares a site with a mainstream secondary school (attended by Noah and Petal), and in their infinite wisdom the individual organising the clinic (not the school nurse we'd been coordinating with) decided they'd do the mainstream year nines first. The two hundred plus mainstream kids. Before the single one that had already involved military style planning, and two carers were needed for. So, the vaccines arrived at ten, and at 12:30, we still hadn't had that phone call telling us operation Inject The Teen was on.
'It's okay, we'll do him in the catch up clinic in two months'
Never mind that Mr and I had spent the morning avoiding starting any jobs that couldn't be walked away from when they phoned us.
Never mind that I'd barely slept the night before, feeling guilty knowing that he was going to hate this, maybe hate me, maybe I'm a terrible parent, maybe he'll hate me forever ... over and over and around and around (welcome to low self esteem and borderline personality disorder with PTSD thrown in just for kicks).
Today was the catch up clinic.
And guess what.
It didn't happen.
And I ended up in a ... let's call it a 'heated debate' ... with the other school nurse who, when I pointed out that this was the second time Mr and I had both completely wasted a morning because of this, thought it appropriate to tell me that she'd vaccinated all the 'ASD kids' (her wording, not mine) with no problems, so she didn't see why we felt it necessary to be involved. I pointed out that she had never dealt with Smiler when he was in Everyone Get Away From Me mode, so she didn't know what his needs were at that time.
I was loud, she was loud.
I felt she was brushing off my knowledge of my son.
Maybe she felt I was questioning her knowledge, her experience.
I - irritatingly - ended up almost in tears, while still red hot angry with this woman.
So it hadn't been done at the main clinic. Then it wasn't done at the catch up clinic. They won't do it at the GPs ("your young man is just too complex for us here"), so now Mr and I will have to take him to the hospital to get the damn thing done. And he's not stupid - when I don't make my usual en route 'no baby, no injections today' promises, he'll know what's happening. So that's at least an hour of his stress levels through the roof, us spending the morning wrangling him, him missing a morning of school, his teachers dealing with the fallout the rest of the day, and us trying to contain his anxiety for the following week and month and year.
Never mind the lessons to be learned, never mind the email currently being composed by an angry sprite on my shoulder to the person who decided to vaccinate two hundred plus mainstream kids before one problematic one TWICE and waste several child-free two-person parenting hours (a precious commodity in the last week of the school term).
How does respecting parent carers and their wealth of in-depth knowledge of their children and their needs translate into 'why you feel you need to be involved is beyond me'?
How about putting Smiler first? In front of the egos, in front of the (on paper) most time efficient way to run a clinic, in front of the inconvenience of having to have parents hanging around? How on earth does this reconcile with the oft referenced 'person centred planning'?
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