I'm At Home With A Profoundly Disabled Child And I'm Afraid I Can't Meet His Needs

'With schools closed during the coronavirus pandemic, parents of children with disabilities are facing a new set of challenges.'

So far, my favorite days are Saturdays. I fundamentally understand Saturdays.

For the last year, I’ve been arguing — at Individualized Education Plan meetings, mediation, a due process hearing — with our school district about WD’s school placement. My argument, in short, is that WD needs an environment and educational protocol specifically tailored to children with cortical visual impairment, a neurological blindness. With this protocol, children can better access their world, as WD has experienced for the past three years.

In my insular world of profoundly disabled children, the focus is on what they can do and what they’re working on doing. Now, I have to large-scale reckon all of the things that both of us cannot do. I cannot do physical, occupational or speech therapy exercises that aren’t beat for beat what a therapist has written out and demonstrated for me. Even then, it seems dicey., nor do I know how to supplement WD’s education the way I might a nondisabled child.

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