Susan's Blog

Tuesday, October 6, 2015

My Top 10 Nat Worries

10. Does he feel his life is terribly limited by his disabilities, and if so, has he made peace with that?

9. Does he feel patronized, talked down to, by me, and everyone else?

8. Does he get enough fruit/veg?

7. Does he sit around too much/is he bored a lot but unable to get out of it?

6. Has the medication actually helped how he feels or does it only look that way to me?

5. Does he like his job?

4. Does he miss his brothers, but not understand why they are growing up and have left/are leaving the house?

3. Does he wish he could talk to people, does he wish people (especially his brothers) would really try to talk to him?

2. Does he like living somewhere else? Does he wish for home?

1. Does he have bad dreams and doesn’t know how to feel okay from them?

BIGGEST FEAR OF ALL HAS NO NUMBER: Has he ever been abused/hurt/intimidated/bullied?

Answer: not only can I not die ever, I also should not be so ill-equipped to parent him.

Another thought: it is amazing, wonderful, and right that the institutions are closed/closing. BUT it is horrible that we still do not have really good solutions for inclusion.

Also, sorry to be negative.

Also, too bad, I’m human and it’s my blog, I’ll cry if I want to.



Yes to so many of those, especially the not dying part. A friend just signed the guardianship papers for her son today. I’m just three years from that decision, and with a joint custody situation.

You are so right about no solutions for inclusion.

— added by Ed P. on Tuesday, October 6, 2015 at 2:19 pm

I’m crying right along with you.

— added by Susan on Tuesday, October 6, 2015 at 3:16 pm

To answer the above… I haven’t got a clue… not that I don’t worry about it… but as long as he appears to be content and I know he’s safe… I’m going with it.

My coulda, woulda, shoulda list is out of control. Lawn mowing is cheaper than therapy (which is impossible to get in this Country even if I wanted it) and I’ve learned… mostly… to live with it.

The not dying thing… honestly, I truly think that when I have to go into care, I’m taking him with me. The alternative, even a group home, terrifies me.

— added by farmwifetwo on Tuesday, October 6, 2015 at 6:45 pm

I’m with you farmwife. No way to a group home. I have heard one too many stories about them-even the supposed good ones.I will spend every last dime I have on a apartment or house and put someone I trust in charge.

— added by yup on Tuesday, October 6, 2015 at 8:54 pm

It’s #2 and particularly your last comment that keep me up at night, and I’m almost a decade away from high school graduation. What I keep running into is nobody seems to have any alternative solutions to what’s out there, and at least in New Jersey most of what’s out there is pitiful. My husband and I have thought about moving, but options in other states don’t seem to be much better than what we have here. Thoughts of the future paralyze me, and I just find myself grateful I’m not there yet.

— added by kim mccafferty on Wednesday, October 7, 2015 at 1:54 pm

Susan have you considered pairing him with a dog for many reasons, but specifically Dogs trained for Autistic children/young adults? I wonder if you’ve seen this book: Practical Partners A Service Dog Research Guide? Written by Julie Nye for 20 some odd years Dogs For Autism has been selectively breeding a line of dogs that are genetically inclined to have all the traits needed to be companion/service dogs for the Autistic.

— added by Kim Trekeaven on Friday, October 9, 2015 at 2:44 pm