“So we decided that it was time for Ned to confront the reason he needs such special instruction. We decided to tell him he has a disability, and try to do it as simply and straightforwardly as we can.” …
Mom: You’re turning 21 now, and people are concerned about you ability to begin to learn to do things that will help you live independently and have a job and things like that I think it’s very nice that you’re looking to help other people, but people are looking to help you, sweetheart. Do you realize that you have a disability as well?
Ned: I find that a little hard to believe.
Mom: Well, you do. You have Down syndrome, something that you were born with.
Ned: (almost whispering) I didn’t actually know that.
Ned: Though I find that a little hard to believe….
Dad: You know Ned, I think some day, maybe sooner than you think, you’re going to want to go and maybe live with some guys- two or three friends–and live in your own place. Do your own stuff. I think you’re going to want to. I understand that you don’t want to now, it seems like a big step, but some day, you may.
Mom: Yes. Jut like Ira has moved out on his own…
Ned: Uh, I intend to go to the family room for a while.
Mom: All right, sweetie.
Ned: (to himself, leaving the room quickly) My guardian angels are going to kill me for this.
…I’m glad we finally had the discussion, although given what he said leaving the room, I’m terrified Ned thinks this is something he’s done wrong, something that could have been avoided, something we blame him for. That would indeed be a tragedy. pp. 96-102
Have you discussed Down syndrome with your loved one? Do you think your loved one is aware of his/her disability? What do you think about Ned’s reaction?
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