Back to birthday parties

With the return to in person school following a year of remote learning, the birthday party invitation came early. The real and true measure of any and all social skills goals in the IEP should be, “By June, having received all appropriate supports in place all year long, the student with CVI will be invited to X number of birthday parties.” Believe me, there is nothing so gut wrenching as attempting to explain to your child why he was not invited to the party. Here we are in November, at the first birthday party invite, for my son with CVI. Continue reading “Back to birthday parties”

“Coronaviress”

BB60D3C5-264B-46F7-B273-F1E366C80A4F“Everything is cancelled.”

All of his questions have the same response. I don’t know – everything is cancelled. We can’t do that right noweverything is cancelled. We can’t go there right noweverything is cancelled. When you have a sensory kid with CVI who exists on certainty and routine and predictability and structure, providing normalcy and certainty right now feels impossible. In this time of coronavirus, his CVI, his sensory experience, his worries, are not cancelled. Continue reading ““Coronaviress””

Hard things

56949203_1274585616029042_2413379197780099072_oIt is hard to be the constant bearer of hard things. Hard to tell him about yet another appointment. Hard to tell him about another assessment. Hard to tell him about a new diagnosis. Hard to tell him about, perhaps, another intervention. Hard to tell him it’s an early pick up day, because a change in routine is hard. You do not look for more things, but you follow up. You do all you can now, in the hope of making life easier for him down the road. Nobody said parenting a child with cortical visual impairment (CVI) is easy. Nobody said it today. Continue reading “Hard things”