How to deal with the pity? - Page 2

[babygirlie]

Someone just informed me the other day the neighbor's kid who is 19 is attending a community college in a program called "Life Skills". He is not high function autism and so it teaches them how to become self sufficient. Not sure if that would work for you or not.

[Emmeline II]

Originally Posted by 2xy 
So now he's 19yo, has no diagnosis, and people wonder WTF is up, you know? He's friendly, very intelligent, and funny. People like him. He could not care less about personal hygiene. His hair is past his shoulders, and he hasn't showered, combed his hair, nor changed his clothing in three days. I think he might have brushed his teeth once. He is terrified of making phone calls. He doesn't have a job and has very little desire for higher education at this time. And I know darned well that if I threw him out, he would end up a street person. He wouldn't "rise to the occasion" and turn his life around; he'd probably die in a gutter because he is incapable of self-direction and self-awareness. We think he has a personality disorder or three, but his new therapists haven't made any formal diagnoses yet.

You may want to read Genius!: Nurturing the Spirit of the Wild, Odd, and Oppositional Child (Paperback). It isn't exactly a "how to" book, but your description of your son seems similar to the authors' and about the same age as theirs when the book was written.

[joensally]

I would accept it as I believe it's usually intended - with care and concern, if some ignorance.  It's also what's socially accepted.  It's relatively new culturally to not think a disability/difference is a tragedy.   Children with special needs were not integrated a few decades ago, and history is filled with hiding and institutionalization of children who were different.

When someone shares with me that their child has a diagnosed difference, or they're worried about seeking an assessment, I express concern and interest.  I ask how they're doing, and ask open ended questions so that they can share as little or as much as they wish.

The thing is, parenting a child with additional needs is quantitatively and qualitatively more complicated than parenting a typical child, nine times out of ten.  THIS is probaby what others are expressing compassion or worry about, anticipating that your journey is going to be harder (therapies, navigating insurance, navigating school etc etc - things that aren't a reality for most parents to the same degree).

2xy, that sounds very hard.  Mine are younger than yours, but I'm certainly already experiencing eroding influence and it's difficult.  Not trying to be pat, but throwing out there the question of if you've tried cognitive behaviour therapy?  The fear of phones, and maybe fear of new settings (school, job), makes me wonder if there's anxiety, and CBT is good for that.  Has he been evaluated for an ASD?

[2xy]

Originally Posted by joensally 

2xy, that sounds very hard.  Mine are younger than yours, but I'm certainly already experiencing eroding influence and it's difficult.  Not trying to be pat, but throwing out there the question of if you've tried cognitive behaviour therapy?  The fear of phones, and maybe fear of new settings (school, job), makes me wonder if there's anxiety, and CBT is good for that.  Has he been evaluated for an ASD?

No, he doesn't have a fear of new settings. He just doesn't have any idea what he wants to do, and I think he's afraid that he will fail miserably at school because he has great difficulty managing his time and making himself do necessary things. We have homeschooled since he was in 2nd grade and we have always gone on tons of field trips and jumped into new settings with no problems. We used to be a military family and so we have moved a lot, too....he always adjusted very well to new town/neighborhood/homeschool group. Just this weekend, he and his brother went away for four days to the Northeast Unschooling Conference outside of Boston. He had a great time and met lots of new people.

Cognitive Behavior Therapy is what I'm hoping they will be using with him in his current therapy, which he just started. Unfortunately, since he's a legal adult they are unwilling to include me in his therapy or speak to me about his needs, so I actually have not a clue about how his therapy sessions are going or even if they're going in the right direction. Another problem is that he seems very "normal" to an outsider. My FIL just today said that DS seems like a "regular kid." FIL (is not my kids' grandfather) lives out of state and has only interacted with my boys about a dozen times in six years, and he's a high school teacher so he's known lots of kids. DS does seem normal until you live with him.