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Child is 40's we are in 70's. Very sad knowing we are having difficult time taking care of her

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Rainmom, That sounds like much of a success story! One cannot go to 'group' forever. To have a friend like that is awesome!!! You must have been a good friend in return.
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Sendme- When my son was first diagnosed with autism I already had the cp diagnois and "the doaner" had already left - so I reacted by drinking. I was getting a lot of literature in the mail regarding autism and I mostly didn't read it - but by chance I noticed a small blurb in an autism newsletter about a support group that was collecting bottles and cans for a fund raiser. Now, I had no intention of joining a support group but I could no longer walk in my garage because of all the beer bottles - so I called them. A tiny woman in a big truck came with her preteen autistic son - he got out of the truck and went immediately to my flower beds and began sifting the bark dust - it totally freaked me out. The woman must have seen my face, seen the beer bottles and she immediately began taking me under her wing. I don't think I'd be here today if it weren't for her. It was a small support group consisting of moms - they taught me how to navigate the school districts, the specialists - everything. Unfortunately the group disbanded after a few years. Today my closest friend is a woman I met in the group. She went on to own group homes for adults with disabilities, primarily autism. About 18 months ago she expanded her business to include in-home care. It's through her that someone comes four days a week and takes Rainman out and about. Her daughter, whom I've known since about age five is Rainmans primary caregiver- needless to say - I trust her! Sooo - to answer your question- finally - yes, I use to go to a support group but not in many years. As what typically happens to parents and caregivers like me, all my old friends- the ones with typical lives - have fallen away. Now the few friends I have are moms like me and I still have them when I need help with Rainman. Although I have to say - these days life with Rainman is a picnic compared to dealing with my mother! Sorry for the long post! BTW - it was $37 worth of beer bottles. They still tease me about it all these years later!
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Rainmom, I understand! Believe me, I can identify too.
In the area of Autism, the commonly used phrase for Asperger's is to state "high functioning", if that is the case.
I don't think it refers to the family or caregiving Mom, as in your case.
Just to devote your life to your son is admirable!
Have you ever tried autism support groups for yourself?
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Sendme - thanks for clarifying- I thought you were referring to me, lol! These days I think I classify as "barely functioning".
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Guess I will just bow out of this discussion, since I am not sending anyone away to a home anytime soon. Plans panic me out too. So will discussing it.
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The question: "Anyone taking care of a special needs person?"
My answer: "Yep high functioning".

Sorry to worry you Rainmom, not addressing you, answering the OP's question.
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Sendme - please elaborate if you are addressing my post.
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Sendme- huh?
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Yep. High functioning.
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LindaSusan - you are the future me. I am 54, hubby 51 and our son is almost 24. "Rainman" as I call him here, has severe autism and minor cerebral palsy- he functions at about a two yr old level. Rainman is an only child and we are not close to any family. Worrying about our sons future - how long we will be able to care for him at home, who will take care of him when we no longer can - it is my worst fear. Thinking about it can literally send me into a full on panic attack and/or sick to the point of vomitting. Needless to say, I avoid thinking about it, although we do have a loose plan. I will be interested in following your posts and comment. Welcome -
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Hugs to you. Yes, of course it is painful. Do you have other children?

Letting go is the role of a parent, whether the children have special needs or not. We know it is our job to get them out into the world, but that first day of school is thrilling and also hurts. Their first day on a job we are proud and also a little sad. If they go away to college, that hurts. When they marry and move away, oh gosh, it is hard to let go!

Letting go is what parents do. It is our job. You may not have had a lot of experience with this if you don't have other children, but, believe me, you'll survive and so will your daughter. Yes, it is hard. Acknowledge the pain. But keep on doing the right thing.
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Thank you , yes I agree with all your comments, and this is what I'm working towards. It's just so painful to let go.
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LindaSusan, as I'm sure you are aware you cannot personally care for her forever. The greatest good you can do for her now is get her into a situation where she isn't dependent upon you and yet you can still participate in her life and advocate for her. Someday she won't even have you to visit and advocate for her. Please help her be prepared for that day by gradually letting go now.

Please don't let your own broken heart keep you from doing what is best for your beloved daughter. Put her first. She needs to learn to depend on others.
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Thank you for your reply. Working on that right now. The problem is letting go, it breaks my heart, and feel I'm abandoning her.
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Get her to a group home, she will have a wonderful time and feel independent. My sister loves her group home and day program. She is 61.
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