My 38 yr old totally disabled, non-verbal but ambulatory son is diagnosed with Profound IDD, autism, CP, seizure disorder and SIBs. Now in residential care and is doing well.
When he was home and still, I would always take him with me on daily/weekend errands to help him socialize (as able) and to get him to walk around. He likes going places.
Standing in the check out line with him making noise (chants/verbalization -not words), some arm flapping and playing with a baby toy when he was 12 (still plays with same toys) others in line would obviously notice.
When I caught the gaze of younger children (5-10) they would look away, sort of embarrassed for noticing. I would say to them "He is pretty interesting isn't he? Would you like to know what a happened". "Yes" they would say. Me - "Do you remember when you were a baby and your parents had to do everything for you - Dressing, you , feeding you, even changing your diaper? "Yes" -- Me "then you grew up and are now able to do all those things for yourself." They would stand straight and proud -"Yes, I do that". I then say - My son's body grew up but his brain did not.
They say "Oh, I get it." Most then have a smile of awareness that different is different - and that was okay.
My goal was to have them see the next disabled person as a person, not only as disabled.
Has anyone ever read Motherless Brooklyn by Jonatham Lethem ? A realistic, sympathetic, often funny book about a young man with Tourette's and how he navigates life and love as part of the Brooklyn underworld. It is, in my opinion, Lethem's best work.
Amazing story and cannot wait to see the film.
Risking TMI here, but here goes.
My 38 yr old totally disabled, non-verbal but ambulatory son is diagnosed with Profound IDD, autism, CP, seizure disorder and SIBs. Now in residential care and is doing well.
When he was home and still, I would always take him with me on daily/weekend errands to help him socialize (as able) and to get him to walk around. He likes going places.
Standing in the check out line with him making noise (chants/verbalization -not words), some arm flapping and playing with a baby toy when he was 12 (still plays with same toys) others in line would obviously notice.
When I caught the gaze of younger children (5-10) they would look away, sort of embarrassed for noticing. I would say to them "He is pretty interesting isn't he? Would you like to know what a happened". "Yes" they would say. Me - "Do you remember when you were a baby and your parents had to do everything for you - Dressing, you , feeding you, even changing your diaper? "Yes" -- Me "then you grew up and are now able to do all those things for yourself." They would stand straight and proud -"Yes, I do that". I then say - My son's body grew up but his brain did not.
They say "Oh, I get it." Most then have a smile of awareness that different is different - and that was okay.
My goal was to have them see the next disabled person as a person, not only as disabled.
Apologies for the long post.
Thank you for sharing. I am glad your son is doing well.
Has anyone ever read Motherless Brooklyn by Jonatham Lethem ? A realistic, sympathetic, often funny book about a young man with Tourette's and how he navigates life and love as part of the Brooklyn underworld. It is, in my opinion, Lethem's best work.
My only exposure to anything that would help me understand Tourette's was Oliver Sacks' writing on it. It sounds exhausting.
Oliver Sacks appears in John's Not Mad (the 1989 documentary about Davidson).
Thank you, I'll look for that.