Parenting a kid with a disability is so much harder than I think it will be. And in some ways, it’s easier than I anticipated. I’m always aware of how lucky we are – that the accident only damaged his eyesight. An inch higher and his face would have been so much more hurt. I miss his chin, before the scar, but it’s still his face. His sweet, sweet little face. And inch lower and he would have broken his neck. We could have been dealing with paralysis or worse.
I alternate between thinking I’m super good at this. I’m in tune with my son, I catch his moods and can usually fix a panic attack within a few minutes. I reassure him, and can make him feel safe. I know I’m not magic, he’s made amazing progress from where he was mentally just before and after the accident. But the reality is that Sam responds to me, all the time, and with my help, he’s usually able to get thru whatever he’s struggling to do.
I adapt what I’m asking – I find the curriculum that suits him best. I know when to push and when to step back.
I’ve managed to get him a computer, a desktop CCTV, an ipad and a portable CCTV – all without the help of the school system or the MA Commission for the Blind (although to give them props – they did hook me up with contact info for the Memorial Fund, and they provided the ipad and portable CCTV).
But then I find a website, for the National Federation for the Blind, and their sister site – for parents of blind and visually impaired children, and kick myself because it’s been fifteen months since the accident and I’m just finding this now? And I can only handle reading one or two articles before I have to stop because it’s just too much and I get too sad. I’m not strong enough to do this – to fight for him, to figure out all of his needs and make it all happen, when the entire world seems stacked against him. I’m all he’s got (and I know that’s not true, because I couldn’t do any of this without Marc – but in the moment, it all feels like it’s me), and I’m not good enough. I don’t know enough, I miss things, I don’t push hard enough for what he needs because I don’t know. I accommodate the anxiety, which means that I’m not doing enough for the visual impairment.
I spend most of my time – going between these two completely different feelings. Sometimes I feel like I’ve got it all under control, and I know what I’m doing and he’s thriving. And then I feel like I’m missing EVERYTHING he needs, and he’s going to end up with so much less than he should have, simply because I failed on a core level to do my job as his parent. I’m supposed to protect him, to guide him and teach him, and encourage him. But what he needs is so much more than just sending him off to school every morning with a healthy lunch, and making sure that he’s got warm clothes and doesn’t lose his mittens. I have to figure out every aspect of his education, with the added complication of a disability that may not impact his ability to walk down the street, and he might even be able to drive a car someday – but he’ll never be able to grab a paperback and sit and read it.
No more website reading for tonight, I’m too sad. Too fragile for tonight. Because tonight, I’m just beating myself up that I haven’t taught him braille yet, or gotten him a white cane. That I’m not pushing him to write essays or do standardized tests. Tonight, it’s all I can think about – and reminding myself that he went thru hell over the past year, that taking the time to deschool and figure out homeschooling is okay, that’s he’s brilliant and motivated, and I shouldn’t be terrified by the statistic that 70% of people who are blind or visually impaired aren’t able to find a job. Tonight, I just feel like crap, and I’m terrified for the future.
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