Thursday, August 2, 2012

Thanks for coming...

First time blogging...feeling a bit nervous on all counts.  Over the years with my daughter, RJC who is diagnosed with autism, I've shared stories of our various adventures and frustrations with friends and family.  So often people have said to me "You should write a book!"  I've thought about it.  I even seriously considered it.  In truth, there are early days I'd rather not relive and I'm not sure I can accurately remember many of our experiences.  Much of the early years is a blur of little sleep and huge amounts of anxiety.  Parents of younger ones...I feel for you.

So instead of a book I have decided to join the world of bloggers.  I figure that as our lives unfold this year with RJC turning the magic age of 21 next June it would be useful to document.  My hope is that as we make our way through this unfamiliar territory we will be able to help those families with younger ones get through it when it is their turn.  No doubt there will be mistakes on our part.  I'm sure we will do things the hard way then discover there was an easier way.  We will probably make stupid decisions then have to find a way to fix the situation we find ourselves in.  History is a great teacher.

I hope this blog will be informational and inspirational at some level.  I hope that those who read my words will feel our experience and forgive our stupidity when necessary. 

I find it almost unbelieveable that my girl is just one year shy of adulthood. After all,  I am clearly not old enough to have an adult child!  When I really think about it my anxiety kicks in.  We have been blessed to have her in an awesome school program but that will no longer be an option.  Somehow we have to figure out what day program will be a good fit for her.  Where will she be safe?  Where will she be happy?  Who can we trust to take care of her physically and emotionally?  Where can she continue to learn while developing a skill?  What program is able to handle the behavioral issues as they crop up unexpectedly?  Does such a place exist and if not...then what?  Then there is the endless paperwork I expect that will come with the process.  Ooooh...the thought is making my stomach churn already.

Over the next few days I'll try to give a bit of RJC background.  Relive some of those younger days (ug) and, on a practical note, figure out how to make this blog accessible.  So, thanks for coming...

13 comments:

  1. Love this. Love you.

    Thank you for sharing your autism with us.
    XO

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    1. Right back at ya. Proud to be a warrior mama by your side :)

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  2. I wanna know your happiest (combined with most proud) moment as a mother of an autistic child (now a woman yes...but in general). Your strength alone gives hope to any difficult time regardless of the situation. I love that you decided to share your journey. <3

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    1. Happy to say we have had countless happy and proud moments. On the very top of the list, though, would be her Bat Mitzvah, which is the celebration of becoming an adult in the Jewish religion. She was 13. I never thought this could happen for her, but with an incredible amount of hard work and committment from many people, she learned Hebrew prayers and read a speech (ok, so it wasn't a typical speech, but it was awesome). It was not only very spiritual, but truly emotional. Somebody described it as a miracle...and I'd agree.

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  3. Donna, this is lovely! I completely understand the wish not to think about, or write about those early days. I've thought about writing my own book, but it's too painful. I prefer to think about the present and the future...not the past.

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    1. Thank you. My short visit to the past so far has been less than pleasant but it's still easier than all the detail that would need to go into a book. I am hopeful for the future...in a wary sort of way...

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  4. WONDERFUL writing! You should be so proud of this accomplishment - starting a blog is no small feat. Jason and I will be your dedicated readers and cheerleaders :) Much love from Atlanta, Katie

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  5. THanks Kate! I appreciate that so much. I hope to see you guys one of the days...I love keeping up with you both via FB.

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  6. Hi Donna. I'm glad that Susan S. made the connection between us. My son is now 23 (!) and what a journey it has been! I don't know very many people who are parents of young adults with autism - these years have been isolating in many ways.
    Transition in to the adult world of services is very challenging here in Missouri - there is much room for improvement. But, we're muddling through and we have a plan (like you, I feel much more reassured if I have a plan).
    I look forward to reading more about your family's stories.
    Anne

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