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?