Friday, January 17, 2014

Autism and Dealing with Uncertainty

It actually wasn't a week - just four days - but my 50-something brother in law who has autism is preparing for us to take him home.  At home, his mother is recovering from surgery Wednesday to remove a radioactive implant which doctors had inserted the week before.

We'll have at least another couple or three days of care giving ahead of us, as we relieve another family member who has been caring for her all week.

It's been an interesting (if not stressful) week for my spouse and me, and I'm sure it was interesting (and stressful) for my brother in law, too.

He said to another relative today that he was happier today than when he arrived.  He's been up here before, but never without his mother.  (We live some 150 miles from he and his mother.) In fact, he's never been anywhere overnight (as far as I know) without his mother.

Throughout his more than 50 years, his mother has been the one certainty in his life.  And, sooner or later (let's hope later) she will no longer be a part of his life.

Brother in law has had to deal with a lot of uncertainty in the past few weeks, something that is very difficult for him. Heck, it would be difficult for anyone. His mother's aging and decreasing mobility as she reaches her mid 80's, her cutting back on the driving which takes him into the world, her falls, her cancer diagnosis, her trips down to New York City for evaluation and then treatment, and finally, the trip up here to stay with his oldest brother (my spouse) because there wasn't going to be anyone to stay with him during his mother's latest trip to New York City. 

He's been asked to make a lot of adjustments.

He clings to routine, as so many with autism do.  In happier days, he would want to know the exact time something would happen. We'd we walking in the door to visit my mother in law and he'd be asking what time we were leaving.  He would love to accompany us on shopping trips but if we told him we'd be going to the grocer, the bank and the drug store but, upon leaving the drug store, also decided to go to the post office, he'd tremble with anxiety.

Now, in this era of illness he knows (to the minute) the time of each of his mother's appointments.  He  asked last night exactly when we will leave for home. He knows, to the hour, when the doctor's instructions will medically allow his mother to drive again.

There's just one problem.  Life does not run on a schedule.

We don't get out of work exactly on time. The appointments change.  She isn't taken on time for any of her procedures. The office giving her a PET scan didn't have contrast on hand and it took three hours for it to get there (he was waiting, at home, with anxiety).  One outpatient surgery turned into a two day hospital stay.  The day she resumes driving will depend on her recovery, not on a magic number listed in some post op instructions. 

Uncertainty.  None of us like uncertainty. But my brother in law clings to routine like a survivor of a marine disaster clings to a life raft.

And now, the high waves are coming faster and faster.

Will his life raft be swamped?

Or will he find a way to survive and thrive through the coming months?

I do not envy him.


  1. It must be so stressful for him. How lucky he is to have your understanding and support. I hope you'll maintain the patience you've shown during your daily blogs.

    1. It is hard, Francene, but now that he is home, his mother is now the target of his questions. She has a lot of experience answering his questions!

  2. Wow, what a challenge. Our son (9-years-old) is on the spectrum as well, and your brother in law's questions ring familiar. Thankfully, our son is used to a variable and spontaneous schedule and has more than once slept away from home.

    Nevertheless, his father and I do worry about that time in his life when we won't be able to care for him any more. Our son is worried about it too.

    There's little doubt that our son will be able to live independently - he's high-functioning, smart, and very outgoing. But still, he's pretty socially inept, which will lead to challenges no doubt.

    I hope that your mother in law recovers quickly and continues on for many many more years. Thanks for sharing this.

    1. Thank you for sharing. One reason why I think about blogging a book is because, in a way, my mother in law was a trail blazer. Back when she had my brother in law, many parents had "experts" recommending their children be institutionalized. I wouldn't mind people learning from the experiences (and mistakes) we are making as we try to gain guardianship of this 50-something man, and have thought of blogging a book.

  3. My ex-husband has an autistic son and he clings to routine too. I feel sorry for his mother; she is too young to have such a limited life.

    Good luck to all of you.

  4. Your brother-in-law is blessed to have many in his life who care so deeply for him to help him with those storms. He'll make it through!

    1. I think he will. I think there are untapped strengths inside of him.

  5. Autism is a very difficult disorder to deal with for both the person affected by it and any family or friends that are involved in supporting that person. With technology and awareness more information is getting out there in regards to people with Autism which makes life a bit easier all the way around. Your brother-in-law is very lucky indeed to have such caring family, not all people with disabilities are that fortunate.Keep loving and caring and those days that seem to be more challenging will pass easier~


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