Apraxia Mondays: Virtual Group #1

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As discouraging as it was to have to cancel our spring apraxia support and education group (due to low enrollment), I have decided to make lemons out of lemonade and go virtual.  Instead of our in-person support group, we’ll just do it right here in Blog World.  The downside is, we won’t have any socialization or cookies.  Since the group is really geared to giving you education and resources while connecting you with other parents socially, I hope you are able to connect with others who “get” apraxia.  If not, bear with me and follow along on Mondays.  I’m sure you’ll glean something, anyway.

Session #1 is all about getting to know you and your apraxia story.  Just as we all have a birth story of our babies being born into the world, we all have an apraxia story.  It may be something very obvious, or less so.  The universal unifier seems to be something like this, “I knew something was wrong–I could sense it–but I wasn’t sure what.”  Some folks went down the Early Intervention route and still others heard the ol’ “wait-n-see” from friends, family and pediatricians.  What’s your story?  How did you discover your child’s apraxia?  Where are you–and your child now?

Imagine we are all togtether in a circle going from person to person and discussing these things.  Would you nod in agreement, offer support, a hug?  How would you respond?  How would you like others respond to you? 

Now, I have given you a notecard.  Everyone in the group has a different notecard.  We’ll go around the circle and answer them one by one.  Here they are: 

  • The most challenging thing about having an apraxic kid is____?
  • How has your spouse/significant other responded?
  • If you weren’t here tonight (reading this blog), what would you be doing?
  • Your most prized/memorable moment in this apraxia journey has been___?
  • If you had one thing to say to your insurance company, it would be___.
  • The dumbest/most annoying thing someone has said to you since learning of your child’s apraxia diagnosis has been___.
  • Tell us 2-3 cool things about your child.
  • What do you hope to gain from your child’s apraxia journey?
  • The best resource you have found on apraxia has been_____.

I know is sounds a bit old-fashioned, but it really helps if you write down your answers to these questions.  You might think you can do it in your head, but it’s much more effective if you see it written down on paper.  They don’t have to be essays or long involved journaling (although not a bad idea)…just 2-3 word sentences.  That’s it.  Consider posting them on your fridge or desk or some area where you will seem them often.  It serves as a gentle reminder that you are indeed doing something for yourself and your child.  Because you are! 

Next week’s “Apraxia Monday” will focus a little bit on what CAS really is–and is not.  The other sessions will touch on some of the points listed above.  So, join along on Apraxia Mondays!

About leslie1218

Author of SPEAKING OF APRAXIA (Woodbine House, 2012) frantically working on a novel that should be ready for submission this fall. Mom of two spritely redheads & one chubby basset hound whose stories & images appear in my writing from time-to-time.

2 responses »

  1. The most challenging thing about having an apraxic child is not being able to understand what he’s thinking. The abstract thoughts are harder to extract from his speech abilities.

    My husband is not much of a talker himself (perfectly capable, doesn’t express himself with words much).

    If I weren’t reading this blog I’d be cleaning up…again!

    My most prized moment along this journey was the night my son said “I love you” back to me when I tucked him in to bed.

    I’m pretty happy with what our insurance company offers for coverage. Though I do wish they offered equal coverage for physical therapy and speech therapy.

    I think all of the comments I’ve been unhappy to hear come from a true ignorance of the situation and are from people who are just trying to make me feel better. I try not to let those comments hurt me. They just don’t understand.

    The coolest things about my child: he is super smart, loving, and funny.

    I hope that along this journey, I can discover all I need to help my child grow and learn so that he never feels “different” or gets “behind” academically or socially.

    My best resources so far have my child’s teachers and speech therapists. They have really been amazing this year. I am so lucky.

  2. The most challenging thing about having an apraxic kid is understanding what impact CAS has (or DOESN’T have) on her overall developmental journey.

    My husband has responded very well – he’s fully supportive.

    If I weren’t reading this blog, I would be playing with the girls or fixing dinner.

    My most prized/memorable moment in this apraxia journey has been hearing that the apraxia is resolving!!

    If I had one thing to say to your insurance company, it would be both a gracious thank-you for being so awesome with covering speech therapy while simultaneously requesting that they be equally as awesome in covering other therapies.

    The dumbest/most annoying thing someone has said to me since learning of your child’s apraxia diagnosis has been that “she’ll grow out of it.”

    Some cool things about my child: she has the best belly laugh!, she’s amazingly smart, she has an amazing intuition about who will be understanding with her and who won’t.

    What I hope to gain from my child’s apraxia journey is a continued understanding to NEVER judge someone else, especially another mom or child, because you never know their “story.”

    The best resource I have found on apraxia has been the internet in general – I read a TON, am constantly critically evaluating everything I read, and assimilate it all into our apraxia journey.

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