Friday, March 17, 2017

Why The Unknown Journey Ahead?

Why have I named this blog "The Unknown Journey Ahead"?


I have a brother in law, "Bil" (I do not use his real name) with a developmental disability called autism.  He's been cared for all his life (almost 60 years) by his mother.  But his mother is getting older, and she has many health problems.  One day, to be blunt, she won't be able to care for him anymore.

How serious a problem is autism in the United States?  I found this statistic on a quick Google search:   "On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD)."

One in 68.  It used to be one in 150, then one in 88, and....well, there are a lot of people out there who have family members with this condition.  Now, the first wave of what many call an epidemic have reached young adulthood, and parent struggle with the fact that most supports are removed at ages 18 or 21.


My husband, who is his older brother, is "Bil"'s guardian.  That means that my husband can make decisions concerning Bil's finances, and many (not all) of his medical decisions.  It was quite a process, and costly, for him to be named guardian. 

So, what happens when my mother in law no longer can care for Bil?  Bil lives with her, and this is what she wants.  But eventually, it will no longer be possible.

We are learning the answer to our question is not so simple.   There are programs, but they are not guaranteed.  He can't work (for reasons that I will explore in this blog another time).  He depends on non profits, government assistance, and family.

Plus, with the new Presidential administration in the United States, social programs are being slashed left and right.  Conservatives tell us we should be depending on non profits, but we have found out some those non profit depend greatly on government funding. 

Without great efforts, Bil is going to fall through cracks.  We must be inventive to try to assure he has a good future. We must, as the saying goes, "think outside the box".  There must be another way to get good housing for him, and to assure him a good life, we say to ourselves, and we are going to make it happen

We will not whine.  We may complain at times, but we will gather our strength, and do the best we can for "Bil".  Documenting that journey is the reason for this blog.


Documenting this journey will be the purpose of the Unknown Journey Ahead blog.  My hope is that others just now embarking on this journey (the birth rate of babies with autism continues to rise in our country, as quoted above) will learn from my experiences or help us with suggestions.  For that reason, I hope to participate in Blogging from A to Z Challenge in April.  In fact, I invite you to join me on March 20, when I reveal my A to Z theme.


There is a need for the knowledge I can provide.  In a way, my in laws and I have become trailblazers.  We would love you to join us on our Unknown Journey Ahead.
 
Join us at Friday Reflections.  Today's prompt:  The reason behind your blog and its name.

What are the reasons behind your blog?

4 comments:

  1. Damn. I am sorry to hear this. And yes, more than a little angry at how the new medicare is hurting the people who need it the most.
    Wishing you the very best.

    My blog is Godyears. Nope, not a religious site. its actually a chronicle of my years as a doctor. I decided to play with the whole 'Docs are God' line so DOCyears turned into Godyears.

    Godyears.net

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    Replies
    1. Dr, I am a fan of your blog. Thank you for sharing your thoughts. Next month, when I participate in Blogging from A to Z, I hope my posts are more informational and less "ranting".

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  2. It must be a scary ride for you and your family...the unknown is the hardest. Your blog title is perfect for your topic. Thanks for linking up.

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  3. It certainly is an unknown journey... I sometimes wonder what would have happened to me if I hadn't met my husband... I think I would be still living with my parents! I'm glad the blog helps you work through and organise some of your thoughts. Sorry I was a bit late stopping by, but I finally got here!

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