If family life is a pond, the idealised life (the sort touted on Instagram by the likes of the Jamie Oliver and Kirstie Allsopp) would be a glossy surface of perfect reflections.
One of those splashes is SP. Which sounds harsh, when he’s a bright, charming little boy. But his rigidity and meltdowns are a phenomenal pain in the arse, not to mention the battles with authorities to get the services SP needs and is entitled to. It’s time-consuming, draining and requires a lot of physical and mental focus.
The splash he makes in our family pond reverberates and affects all of us.
Not just myself and Husband (me in terms of daily care, meetings and conversations as his advocate, Husband emotionally as SP pushes him away) but the others too. My dad and older daughters who get roped into childcare when work gets in the way, little Teddy who bears the brunt of SP’s lack of desire to share and Amy who doesn’t always get the attention she deserves or needs.
This week I was asked to a meeting at the school. Despite a start to school that exceeded expectation, it’s been decided that SP should only attend morning sessions until half term. The school just doesn’t have the resources to ensure that SP gets the support he needs whilst also settling in the other 30 children in the class.
I should have been more proactive when it came to ensuring resources were in place for him starting school. I should have started the EHCP process sooner (although their argument of suck-it-and-see may have still been the result). I followed the advice of the education staff around me. I should have fought harder. Or I should have chosen a school that could meet his needs as standard. But are his needs severe enough to need a place at a special school when they’re scarce enough for all disabilities? There are no ASD specific schools in the area and that in itself makes me angry, but anger just takes up more energy and achieves nothing.
And thus arrangements fail and I’ll be relying on other people to fill in where work and childcare clash. There’s the pressure to be available to everyone, the guilt of being unable to achieve the impossible. Guilt also at wanting SP to conform the same as those other neurotypical kids to make life easier, when without other splashes in the pond we’d be able to focus purely on his needs.
But worse. Amongst the ripples, the largest get focused on the most. It’s easy to ignore smaller splashes. And so it is with Amy. The meeting also included concern about her as her anxiety levels have increased to an extent that she will barely speak at school. There’s nothing wrong with being more introverted or sensitive and this has always been the case, but now it’s holding her back. Her anxiety is making her scared to try in case she’s wrong or she fails.
But she’s not the failure – I am! I’ve failed her, by letting her go under the radar. When one child demands so much attention it’s so easy to forget that the ‘normal’ ones need support too. Whatever the underlying cause of her worries, we hoped they’d just go away. But life doesn’t work like that.