Sunday, June 8, 2014

Rolling on the Floor Not Laughing

I've realized that I've started to take you, my faithful blog readers, on a journey through an experience called "autism" but I haven't talked about one of the most important thing we must remember as we start our journey.

Dear readers, it is all about support and safety.

I asked my spouse when he first realized that his younger brother, "B", was not developing the same way as his next younger brother.

He was about eight years old, and "B" was three.

"B" was not talking. He would throw tantrums. 

Not only that, but he never crawled.

Instead of crawling, "B" rolled on the floor. Everyone remarked about it, but no one seemed to know the significance.

 Now, this would be an indicator that something was wrong, but not back then.

When my mother in law was sure that something just wasn't right, she encountered pediatricians who had not been trained in developmental issues.  This was the early 1960's.  So she knew something was wrong but just didn't know what to do about it.

Why didn't "B" talk at three?  Well, according to his doctor, it was his mother's fault.  She had spoiled him, letting "B" depend on his two older brothers to communicate on his behalf. Did she know there were other mothers and fathers out there in the same situation?  I'm not sure.

There was no therapy the schools could offer. In fact, his right to a free, appropriate public education was not yet guaranteed by law.

Basically, my mother in law made up whatever she did in raising "B" as she went along, as did other mothers of children with what we know today as autism.

Now, the torch is being passed to us, the siblings and spouses.  And, in many ways, we struggle. I thank you for coming along and promise I will be sharing some good information with you during June.

My mother in law, although she didn't know it then, was not alone in her journey, just like we aren't alone in ours.  For a minute, I want to blog about the mother of perhaps the most famous person with autism today, Temple Grandin.  Her mother, Eustacia Cutler, now travels the world, lecturing on various aspects of autism.

This is what Eustacia Cutler has to say, quoting from her foundation website:

"A strong family is the linchpin that keeps a spectrum person from slipping off course. Family care for that person can be a lifetime task—in early years for parents, in later years for siblings. It stands to reason, therefore, that support for all family members in the early years, will build a strong family able to cope with whatever comes—a more humane and less costly solution than 70 years of institutional support.

As yet no autism organization has given full focus to the disorienting impact of autism on all members of the family.

While some families have the strength of an extended family or community support group, and enough money to buffer the non-stop task, most do not."
Families bend, if not break, under the strain.  There is, according to Ms Cutler, hidden domestic abuse.  There is a debate over whether families with a child who has autism divorce at a higher rate than other families. Life can be hard. 

I guess I am still brooding over the incident I blogged about yesterday, where a young blogger caring for her older sister (parents dead) wrote one post and felt she needed to take the blog down, after some less than appropriate comments.

I wanted to thank everyone who commented on my post yesterday.  I will thank you all individually, too. You, my readers, are awesome.

And in the meantime, those who have family members, the sibs the in laws, the caring friends, need to have safe places to vent, to celebrate, to inform.  There are such places.  I will blog about them later this month.   And yes, we do laugh. We do have good days and good times.  But, overall, it can be so hard.  Thank YOU for your support!

I will continue this journey through autism on Tuesday.

7 comments:

  1. Your posts on this subject are good and the fact that you are raising awareness on this topic brilliant.

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    1. Thank you. I hope I can succeed in my mission.

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  2. As a divorce coach, I am aware that parents who experience the incredible financial costs, daily challenges and insurance battles of living with autism often separate and divorce at higher rates than other couples.

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    1. From families I have personal knowledge of who have children with disabilities - I would agree with you.

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  3. It's good to know that today there is so much more support and more tools to helps families than there was in the 60's/

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  4. What a great read! I hope I can find more content about this. I actually enjoy reading it.

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  5. Gosh, you're doing an amazing job of raising awareness Alana! Your topics are always so interesting!

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