Tuesday, June 3, 2014

Another Change in Direction

We are feeling our way, lost in an unknown land, without a guide, as the guardianship process for my brother in law with autism crawls along.  We've never had a guide for anything pertaining to my brother in law, who was born long before the autism epidemic I touched on yesterday started.

Here I am, a blogger and writer.  Shouldn't I be writing that guide, that book, describing what we have done? What has worked, what hasn't? Our mistakes, so that others don't repeat them?  There are millions of people out there with children with autism, being born or in the process of growing up.  They will need a guide as they transition from raising a child to helping their child in adulthood.

If I don't write it, then who will?, I ask myself.

And then, I get second thoughts.

First, blogging is not book writing.  I enjoy blogging.  It uses an informal voice, it uses links to other blogs and websites, and you can insert other media.  In particular, I enjoy taking photos and posting them.  Others make videos.  I sometimes link to You Tube videos at times.

Books are more static.  It's a whole other thing, I am finding.

I'm finding I'm staying up at night thinking about the blog.  I don't like that.

Also, in thinking about our guardianship efforts, a lot of what we have experienced is specific to New York State, where both we and "B", my brother in law with autism, live.  Some of his other experiences are New York specific (such as something called "Medicaid Service Coordination".

And finally - I think I am rethinking just how much our experience will help others in the future, as social service and societal attitudes are changing so rapidly.  My guide may end up being a historical curiosity if I do it wrong.

 I hoped to use this month's posts as a springboard to (perhaps) writing that guidebook I wish I had in my library.  Now, I am rethinking the project  Perhaps not blogging that book, but gathering thoughts for further editing.  Right now I'm too thought scattered to make a success of this.

I will still do it, just on a smaller scale for now.

In the meantime, I have decided to cut back some (not all together) on the autism posts for this month.  I will still have my Spring Things (I hope you love what I have planned for tomorrow), my Sustainable Saturday.

This is not a failed experiment. In fact, I'm glad I tried it.  I'll just have to see how it progresses.  Worst case, I'll have content for my blog.  There's nothing wrong with that.

If you feel you will get value from more autism posts, please feel free to comment on what might help you.

And, see you tomorrow with some lovely spring photos from upstate New York.


  1. Alana, I understand why you're second-guessing your impulse to write that book, and I REALLY get not wanting to write it and then have it become a mere curiosity as social awareness, regional differences in procedure, and medical advances change the landscape. But even though there are advances, they may come slowly to isolated areas. And region-specific problems? Your writing about them may give someone an idea for WHAT to look for in their area, or may impel them to stimulate changes in procedures in their own state. Maybe the book isn't where your experiences are leading, but you do have good information to share. I hope you find the right vehicle, kiddo!

    1. Thank you so much for your encouragement. I will feel my way, and continue. If I stumble - well, it's a blog post, not the end of the world. If I can help even one person, it will be worth it.

  2. Alana, don't give up. Maybe take the pressure off about writing the book and just post about the things you want to share with your everyday experiences being a guardian to your brother-in-law. I am sure other people in similar situations will find your posts helpful and comforting as they relate to them with their own experiences,

    1. I may just do that. I thank you and others who have shown their support - it is greatly appreciated

  3. I always inspire writers, now I know it's not that easy. That was a nice ride. Thank you for sharing

  4. Hello Alana,

    I can see why you can be frustrated and that it can be a challenging decision. One thing you could do is still blog while you can or if you feel like it and still write a book in the background. That's what I'm going to do! Hope this works out for you!

  5. I think this would still be a very important book IF you find that you want to write it. As you mentioned, there isn't a lot of information out there for family members of adults with autism and even less from those who are living through it and have first-hand experience to share. But a book also takes a lot of work and time and brain space so it's perfectly understandable if you decide to put this project on hold for now or indefinitely. *hugs*


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