Writings about Ataxia, being DeafBlind, family life. The best life can offer!


DeafBlind frustration #293

Good afternoon one and all!

Being DeafBlind can be isolating, sometimes frustrating, but always enjoyable!

Today, my oldest son was supposed to be at school today, first day back after the holidays right?

We have an agreement that he would go to school on Mondays after lunch.

Today, at 12, I make him lunch, then encourage him to get ready; he needs to be there by 12:45.

!2:15 I text him and tell him lunch is ready and to be ready…

At 12:30, he’s eating lunch and watching TV. I’m sitting two feet away, facing a different direction.

I nudge him, and he walks by, I assume he is getting shoes on and so forth.

The next 30 minutes I am focusing my attention on phone calls, emails and other things.

And, there he is, still sitting watching TV!

I did not see him return to that chair, nor do I hear the TV… The Simpsons are on!

My frustration is that I didn’t notice the kid is still here!

Groan!

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About the author

Craig MacLean is DeafBlind with ataxia, a rare condition called CAPOS. He & his wife of 22 years have two sons, the oldest of which has CAPOS as well.

Craig uses American Sign Language to communicate. He is an avid writer, friend, Hot Wheel collector and intervenor advocate.

Craig sits on many committees, boards and associations as a DeafBlind rep. He graduated university with a BA in psychology in 2000.