Sunday, June 1, 2014

A Fortieth Wedding Anniversary and Continuing an Autism Journey

Autism has been in my life for almost forty-four years. It entered my life almost to the day I started to date my spouse.  It entered quietly in the form of his younger brother. 

Today, we are celebrating our fortieth wedding anniversary.   We have been through our share of good times and bad times in these forty years.  We hope we will travel through life together for years to come.  Meanwhile, this younger brother of my spouse's is still in our lives, and still part of our journey.  He's a huge responsibility and my spouse's responsibility will soon be growing even more.

As regular readers of this blog know, my brother in law, in his 50's, is developmentally disabled with a condition called autism.

Autism is a spectrum disorder - some individuals can live lives with less help than others.  Many never live up to their full potential.

For almost a year, my spouse, his oldest brother, has been trying to gain guardianship of his brother.   My in laws never did much to plan for the future of "B".

 It's sad but true. But, considering the times my brother in law was born (the 1950's) not unexpected.

For his entire life, "B" has lived with his mother in New York State.  My father in law passed away over 15 years ago. Since then, it's been just the two of them in a house that once was the home to an entire family.  "B"'s siblings grew up and left.  B grew up and is still there.  He has lived in the same house for almost his entire life.  He has his own room, and his own bathroom.

People with autism do not cope well with change.

Some major changes are coming to "B"'s life.  .We know he is aware of that on some level, but his thoughts are unknown to us.  Autism makes it so difficult for him to communicate with us. We suspect he has a rich inner life, but it will be forever locked away from those of us who love him.

My mother in law, like all of us, is mortal. One day she will no longer be with us.  We had a scare late last year when she was diagnosed with cancer, but she is currently in remission.

But, it's just a matter of time before she may not be able to live independently.  She's fallen several times in recent years, and fell again just before Mother's Day.  Her cancer treatment sapped a lot of her energy.   Thankfully, her mind is intact.  We live some 150 miles from her, which makes us long distance caregivers.  We are part of a large club of baby boomers, but our responsibilities are a little different.  How many of them have sibs or sib-in-laws with physical, mental or developmental disabilities is unknown to us.  That statistic must be out there somewhere.

If my mother in law dies before my spouse gains guardianship, the state of New York will take control of his future, and he will have no choice in the matter.  We don't want that to happen.

Advocating for "B" and trying to help plan his future (something that is difficult for "B" to do on his own) is part of the package of our marriage.    And part of sharing our lives has been "B" entering my life.  I've known him for over 40 years.

This month, I am participating in the 2014 FLX/WordCount Blogathon.  This is my fourth Blogathon, and some of you may have noticed that this isn't my normal Civil War Sunday post.  Indeed, I've decided to devote part of June to blogging more about my brother in law and the impact he has had on my life.  I'll blog more about that decision later this week.  I do not intend to turn this into an "autism" blog, but I do want to share more of this portion of my life with you.

I will still have my Spring Things feature on Wednesday - look forward to showing you some great flower photos taken in my home area of upstate New York.  I'll probably also continue my Sustainable Saturday feature. I hope you'll join me as I temporarily change the focus of my blog.

Please, join me as I begin my 41st year of marriage, and as I continue my journey through autism.

Has autism entered your life in some way?

6 comments:

  1. We have a nephew that shows signs, but I don't believe has been formally diagnosed. We too wonder about his future.

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    1. I wish you and your family the best of luck in your quest. There is a lot of support out there. Please don't hesitate to reach out, as a loving uncle.

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  2. Congrats for 41 years of marriage! Here's to another 41!

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  3. It sounds like it's been quite a journey, but I'm sure your blog will offer help to many others who find themselves either in the same position or something similar. Thanks for sharing your thoughts and experiences!

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  4. Agreeing with Deborah that your blog will be a great resource to others in similar situations. What a blessing that your BIL has you and your husband! It seems so many in situations like that end up falling through the cracks in one way or another. Really looking forward to doing Blogathon with you this month, and to reading your posts on this topic!

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