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it's my ds's birthday...


bettyandbob
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I have a nice bbq dinner planned. I made apple pie (his favorite, he hates cake).

 

But I am very sad. I need to vent and then pull myself together for the evening.

 

He is 2E. He is 20 today. We have very long way to go before he will (if ever, it seems sometimes) be on his own. I've been replaying all we did throughout his childhood. At 4 a nurse was horrified by his drawing of me at his well child check--told me he had a serious problem, but HMO would not help (drawing was a deflated balloon with eyes and a line for a mouth. ds pointed and said her brain is here). We did OT out of pocket for years. And began the alphabet soup of dx. At 6 he had 2 full days of evals at a children's hospital. We were told "this kid is amazingly smart. He's going to do terrible in school. He'll do great in grad school. You have to keep him alive--his profile is one that is prone to suicide." No guidance. It's been so up and down since then. We did a lot of therapy. We homeschooled. We did many activities -- some to help with motor skills, some for social skils. I coached him in social skills before activities. He went to public high school. He did do terrible academically in school. All IB classes in high school. He refused regular classes and the teachers didn't want him in regular classes. Couldn't ever get organized (I tried tried tried to teach organization). He went away at 17 to college. Did ok, but wouldn't go back after two semesters (I'm sure he did OK because it was a military program and organization was forced upon him). He's been taking cc classes since. He's started and dropped a lot of classes. He's finished some classes (at the end of next semester I think he will have what I would think was normal for finishing 2 years of college).  I'm sure he's depressed--will not go to a doctor (and no way could we make him). I'm sure he's lonely. He hasn't been able to get a job. It's upsetting to me. He has gotten interviews. No one hires him. I'm sure it's painful to see his younger sister has been working for a year and a half.

 

I've been reading the kicked out thread. I see other threads where people have expectations of adult dc. It's just not happening here. He has no life skills. I've really tried. And I still have that "you have to keep him alive" hanging over my head.

 

There are little things. He's finally gotten the message our finances stink. (I gave up a very good career 15 years ago to focus on his needs) He asked his dad if he could have a movie ticket for his birthday. The progress there is that he did not expect that he should get a bunch of stuff (I don't think 20 yos should get a bunch of stuff anyway, but these things don't compute in his brain). He refuses to learn to drive. He has learned that he can't expect us to come get him whenever he's done with class--he has to wait until I'm done with work. This is progress, he was calling dh at work to come get him.

 

I'm tired. We have a long way to go. It seems like so many adult milestones are just not happening. He has brother with down syndrome who will never leave home. We've been over the fact that he really has to get going on school and work and get out. We have very little retirement and we live in a state that provides very little to no services for persons with disabilities so what we have has to take care of younger ds. Older ds knows this.

 

Sometimes it looks like ds making steps forward. Sometimes. I've met people who have sons who had a lot of trouble moving into adulthood. I keep hearing ages like finally OK at 25, 27, ...28. I am so, so  tired now.

 

He should be home from class and voting soon. I'm going to pull myself together to be cheerful.

 

Please do not respond with anything about how I must have done my parenting all wrong.

 

 

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