By Ellen Kinch – SEN Parent Support Group Member
To any professional I’ve ever had to work with in regard to my wonderful sons.
Every single meeting, I want to scream out that this is all so uncomfortable for me-that as a full-time, professional people pleaser, pushing back and disagreeing with you feels awful. But I have no choice. You are so often painfully wrong, and it’s not your fault. It’s taken me years to understand my son’s intricate nervous systems and how masking works. If I was on your side, it would be far easier for me to accept the false reality that my son is ‘okay in school’ than to get to grips with the fact that his nervous system is too threatened in school to even consider asking for help from school staff in meeting even the most basic of his needs. It’s not you. It’s not personal. I know you aren’t deliberately doing anything to make him feel this way. Nor am I. It’s just his neurological wiring.
To hear that ‘he seems fine here’ or ‘we offered support and he says he doesn’t need it’ doesn’t come as a comfort to me. See, at home my child is comfortable being autistic and utilising support strategies. He’s authentically himself, even when this causes friction with us as his parents and his siblings, because he knows that he is accepted here as he is. It doesn’t comfort me to hear you say that you see nothing, and even more, that he asks for nothing. No one taught my sons how to be autistic, how to stim, what echolalia is, or to have an aversion to a litany of fabrics, tastes, textures and noises. At home, they flap, they spin, climb and jump, express a full array of emotions, have meltdowns, rock on their chairs, use fidget toys and wobble cushions, hyper fixate on their special interests, and info dump about their favourite subjects. The fact that every bit of that is hidden away for you is of no comfort to me. All I hear is that my child doesn’t feel safe to be openly autistic in a world that isn’t made for him. My child’s nervous system has detected a threat in being openly and authentically himself at school, whether that be due to comments or teasing from peers, or discipline from teachers due to causing a ‘class disruption’. All of this pretending comes at a cost to his mental and physical well-being. Burnout is real and it is not easy or quick to recover from.
I. Am. Tired. I am exhausted from having all of these meetings where I bear the most painful and vulnerable parts of our family life and my children’s school experiences on request, just to be met with a nod, a tick of a box, and the same questions asked next meeting as though my son’s support needs will have magically disappeared. I am doing my part to make their home a safe, and nurturing place where they are validated and understood. I am also fighting a system that prioritises funding over need and every time the smallest bit of support is agreed, it is threatened to be taken away at the drop of a hat. Just please, listen to me and what my children are going through as a result of not actually being okay in school after all. Put in place the support that you would IF you were seeing these behaviours in school and stick to it. A SEN need is a SEN need, wether you see it or we see it or everyone bloody sees it, only putting support in for children who are outwardly displaying that need in school is a selfish use of resources (especially when my son has an autism diagnosis and evidence of PDA profile). There. I said it. Prioritising support for the children whose outward disregulation causes you problems in school, but having no regard for the problems caused to us at home by refusing to support my son’s need IN SCHOOL is morally unjust. More to the point, please don’t scapegoat his autonomous need to mask as a reason not put in place accommodations. You perpetuate this fear of being different for him in doing so. If you bite the bullet and schedule the support in, my son will experience it and realise that it is in fact, not something to be anxious about after all, and is actually something safe and helpful to him. Also, teach the other kids that it’s not shameful or weird to be different and that not everyone needs the same things in order to thrive. If they tease him for accessing support, teach them not to. Hey presto! He then has the accommodations he needs, his quality of life isn’t massively impacted by treading water at school and I can stop bugging you (you know you’d like that!).
Believe it or not, I have a life and things I would much rather be doing that being a pain in your arse and sending you emails like I’m Fiona from Baby Reindeer (on crack). I promise I’m not obsessed with you or trying to make your job harder than it needs to be. I just want the best for my child/children, and I’m not even asking for that, just the bare necessities (see Maslow’s hierarchy of need).
If you still don’t get it after this, you’re welcome to stay in our house and spend time with my kids mid school week!
