Tuesday, June 11, 2013

The 50 Something Lack of Planning Autism Blues

I want to take a little detour around my normal subjects. I don't blog about it a lot, but I have a 50-something brother in law who has autism. 

Last week, I blogged about the hard questions a parent of a child with a disability (specifically, autism) must ask, in preparation for the eventual adulthood of their child. I promised to tell my story - which is really the story of my brother in law. Because he is not online, and doesn't know about my blog (or blogging, for all I know) I will respect his privacy and let him remain nameless.

My  brother in law with autism was born in the late 1950's.  In those days, there was no Child Find. The word "autism" was not in the public vocabulary.  There were few or no support groups.  No Internet.  No, there were only bad parents, each struggling individually.  My mother in law was one of those "bad parents".  This was not her first child, nor her second.  She was an experienced mother and yet...he wasn't talking.  (Why? Obviously, she was spoiling him. Or so her doctor said.  In those days there was a common belief that autism was caused by "bad parenting."

He didn't talk until he was five.  There were other things wrong, too, and my mother in law knew it, but the doctors didn't seem to care much.  Did the schools help? No. He was put into special ed, which, in those days before the Americans with Disabilities Act and like laws, was not much better than being locked in an attic.  He was bullied.  Eventually, a teacher did make a big difference in his life, and he graduated from high school.  But it was a huge struggle for my mother in law and for my brother in law.  

While this was happening, a final child was born and my mother in law battled health challenges.  Time passed.

When he was 19, a family friend strongly suggested she get an assessment.  She did, and the verdict:  autism.  He ended up in a sheltered workshop.

Fast forward a whole lot of years, to 2013. My brother in law still lives at home. It's the only home he's ever known. Meantime, time has not been kind recently to my mother in law. She is now a widow. She had a stroke several years ago,and has a lot of problems with mobility.  She has injured herself time and again by falling.  She's in her 80's and people in their 80's do not mend well.

Her other children are "normal", grown, with their own lives.   My spouse is the oldest. He is several years older than his brother.  I've known my brother in law for over 40 years now.

My mother in law has never hidden my brother in law away, and I give her a lot of credit for that, given the times she raised him in.  But she won't let this son move out of the house to another placement that would allow him a life of his own.  She wants him by her side until she dies (in her home, in her sleep, is her prayer.)  Other than that, there is a black hole of not enough frank discussion that she has tiptoed around and we have allowed her to tiptoe around.  It's a very long story, and I am not telling this story to assign blame to anyone.  We've been working on this for years and now we are going to have to switch our work into high gear.


"To be Continued".

Tomorrow, on the Word Count Blogathon, it is Guest Post Day.  My normal Wednesday feature will be later in the week.

Are you a caregiver of someone with a disability?  What has been your greatest challenge?

14 comments:

  1. These are never easy discussions...
    Part of the issue is fear, part of the issue is loneliness, part of the issue is misinformation...

    No magic wand exists to solve these. My heart goes out to you all working on this...

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    1. Thank you. I want to share this because I know there are other families in our situation - all trying to feel our way through.

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  2. This must be a very difficult thing to deal with, Alana, since when we think of autism we usually think of it as being a problem of childhood. The son, however, would probably blossom if he were allowed to stretch his wings a bit.

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    1. You are so right - autism does not go away when the individual becomes an adult. We agree that this family member has so much potential. I hope we can give him the opportunity of stretching his wings.

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  3. Yes, my son is 23. He has always been developmentally delayed, in sp. ed, and now has a physical disability called Dystonia. He has been in a wheelchair now since mid high school. It's hard to pinpoint the "biggest" challenge right now because there are many challenges. Finding a good caregiver is one of the biggest right now. We just found out there our morning caregiver who is wonderful with David, is leaving to work for another company. I'm so sad about that but I know the Lord will provide another one who will be just as good. Sometimes it's hard to believe though. Looking forward to your post tomorrow!

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    1. Dayna, I am sending you and your son both my best wishes. May you find a good replacement for your morning caregiver soon. "One day at a time" is so true. Tomorrow's post will be on a different topic but I hope to return to my brother in law's saga in the next couple of days.

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    2. thank you! looking forward to your future posts!

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  4. Does your BIL want to live away from his mom? My best friend's adult brother (in his 40s) with autism still lives with his aging parents but he has a job and a car and he comes and goes as he pleases.

    Maybe baby steps are required for your BIL? What does your BIL do during the day to keep him busy?

    Good luck to you and your family.

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    1. Part of my brother in law's particular makeup is that, although he is verbal, it is very difficult for him to express himself. We've never dared to ask him that question-and I don't know if my mil could deal with it if he said he wanted to live elsewhere. He never has been able to learn to drive - where he lives, there is limited mass transit. He works part time in a sheltered workshop, and when not working, he stays in his room (coming up only for meals) reading or watching TV, although he loves to go to Wal-Mart or to Barnes & Nobles, too. Baby steps, yes. He suffers a lot from anxiety and any change of routine brings the anxiety on.

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  5. I have two nephews with Autism, but I don't know much about them as my sister doesn't really like anyone and blames us for her problems. :/
    Anyway, I hope that your BIL will be alright even after his mother passes on, it's too bad he hasn't been allowed to spread his wings a bit more

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  6. I have a sister who has an autistic daughter. She moved her into a facility that is teaching her to live without parental assistance because one day the parents won't be around.

    Good luck in your plight to fix this.

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  7. This is a subject very close to my heart as I am the mother of an 8 year old autistic son and even now it's a struggle. I've had to fight with schools in order to get him the services he needs etc. I applaud your MIL for not shutting him away and that teacher for helping. All the best to your family.

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  8. This is such a difficult subject. Perhaps your mother-in-law is making up for being classed as a bad parent back in the 50s.

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  9. I think you are really brave covering this subject as it's a difficult one!

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