Thursday, July 31, 2014

How a Journey of 1000 Steps Begins - Part 2

On Tuesday, I started a series on how our journey to advocate for my spouse's developmentally disabled brother in law started.  As I blogged about, my father in law died suddenly, one Christmas night in the 1990's. 

After the viewings, and the funeral, the paperwork started.

"B"(as I call my brother in law in this blog) helped my mother in law and me make the phone calls to various agencies, to my father in law's former employer (he had just retired), to Social Security, and to the ARC chapter who ran the sheltered workshop where "B" worked.

The ARC, in the "old days" had another name (so unacceptable today):  "The Association of Retarded Children". Yes, things were so different back when "B" was born, in the 1950's.  Or, even, in the 1990's when our advocacy journey began.

"B"'s association with ARC dates, I believe, from his late teens.  A long, long time.

"B" didn't make the calls.  I made a lot of them, but if we needed a statistic (such as the date he retired, the date he turned 65, and so forth) "B" was right there with the information.

That is one of his talents.  Not all people with autism have that kind of talent, but "B" does.  He can, for example, remember the weather (a special interest of his) for almost every day of his conscious life.  He also has an internal calendar with dates of almost everything that has ever happened to him.

You'll recall that I blogged, back in June, about "B" insisting that the family cat was responsible for his father's death.  In talking to the ARC, I asked if there was any kind of help they could provide in helping "B" adjust to the death of his father. (Incidentally, in case you are wondering - yes, people with autism do process death differently than many people without autism.  Perhaps this should be the subject of a future post.)

The answer to whether the ARC could provide help was "No."  The reason why shocked me-it was so unexpected.  And it started us on our journey of advocacy, which came to a milestone earlier this month, as my spouse was granted guardianship of "B".

So long ago, my father in law had insisted, every time we asked about "B"'s future, that "everything was taken care of".


It turned out that nothing was taken care of.  There was one important detail he had neglected t take care of. And that was why "B" couldn't get this, or any other service besides a sheltered workshop, from ARC.

"To be continued".  (Yes-there will be a third post.)

My readers, thank you for coming to my blog!  For now, I may have to cut back my blogging for August and September  I still plan to blog daily, but posts may be reruns, or photo posts.
I still will have good content for you, but a family situation is taking a lot of my mental energy right now.  I hope you will understand.

And know that I appreciate you, my readers, every one.  Thank you for reading my story - and thank you for your comments.

See you in August!

6 comments:

  1. Thanks so much for sharing your story about advocating for B. I look forward to reading more!

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    1. Fear not, there will be more posts about "B"! Maybe in August. Thank you for your kind comment.

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  2. Hey Alana

    You are so BRAVE to open up about what is clearly a very challenging journey. My cousin's son is autistic, and I have watched up him blossom into a fine young man in the face of societal scorn. My cousin is - hands down - one of the strongest women in this WORLD! Her commitment towards her son AND the cause of autism is an inspiration. I am glad to be surrounded by angels like you all.

    BTW, I sometimes pen feature stories for a NPO in Schaumburg, IL that offers recreational activities for children and adults with disabilities. The capabilities of these wonderful people astounds me.

    Yes, they are beautifully special. #HUGSS

    Congratulations on completing this challenge. I am so glad to have connected with you. You were one of my five top favorite bloggers of July (http://dialmformarketing.co/2014/07/30/paying-it-forward/)

    Much love
    Kitto

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    1. I never realized my blog was "redolent, rapturous and remarkable" . I am going to pay it forward (thank you for naming me one of your top favorite bloggers of July), and that is a promise.

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  3. Thank you for sharing. I have a lot to learn about this!
    Kim www.things2doinutah.com

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    1. You are welcome-thank you for stopping by.

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