Apraxia Monday: Dealing with the Dark Days

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By Leslie Lindsay

I am a day behind…but, here goes “Apraxia Monday” on Tuesday.  I’d like to share with you a few comments, emails that I have received from folks who have a child with with apraxia (CAS).

“Dear Leslie, I have a son with apraxia.  While he is in intensive therapy and progressing, I am an absolute wreck.  I have been anxiously awaiting the arrival of your book for months.  Bless you for all you have done to help us parents.”

And another….

“Dear Leslie, My 2.5 year old daughter has apraxia.  She has been in therapy since she was 18 months old.  Most days we go about our daily life without dwelling on apraxia too much–but I have days where I break down and fear for the future.  I need someone who can understand and relate.  It’s getting harder to see her grunt at people and have them stare at me as if I am a clueless parent.  Instead of driving her to [speech] therapy, I dream I am driving her to ballet class in a pink frilly tutu.”

I chose both of these emails for two reasons…

1.  They represent both boys and girls affected with CAS (the incidence of CAS is actually a little higher for males than females by about 4:1, but it affects both sexes).

2.  And they share how parents feel at the deep core:  “I am a wreck.” and “I dream of driving her to ballet….” 

It’s not easy having a child with apraxia.  There is a lot of strain and planning…the logistics of having a child with a special need can be overwhelming:  when to go to therapy (how to squeeze it into an already full life), what to do with siblings while your other child is at speech therapy, how to pay for it all…and then there’s just the plain ol’ coping with a special need on a personal level (dealing with unwanted stares from strangers, feelings of grief and uncertainty, frustrations, etc).

What’s a parent to do?!  (below is an excerpt from Speaking of Apraxia, Woodbine House, March 2012).

  • Determine how you keep your pitcher filled. We all need to fill our personal well from time to time. How do you do it? What do you need to feel energized and ready to go? It’s different for everyone. For you, it may be a morning jog, an afternoon nap, time on Facebook, a crafty enterprise, a phone call to a good friend, or daily prayer. You need to find and make the time to keep your pitcher filled.
  • Know that you need breaks, too. I guarantee you will feel better if you schedule a break for yourself. Did you know that employers are supposed to give employees a fifteen-minute break for every four hours of work? Even if you are an at-home mom, you are still working and you deserve a break.
  • Reclaim past hobbies or explore new ones. Always wanted to learn about spelunking or knitting? Why not absorb yourself in learning about something new? You may find that you become less focused on the problems (of apraxia) and more interested in something that revs you up.
  • Schedule time away. It doesn’t have to be a trip to theVirgin Islands, but go somewhere, even if it is just to the hotel down the road for a night (or your parent’s or friend’s home). Put it on the calendar. You are that important.
  • Connect with your friends. No doubt you will meet others who have a child with apraxia or other speech-language needs. That’s great. Share stories and feelings about your unique experience, but remember that you have other friends, too.Connect with friends who aren’t all about apraxia, too.
  • Join a Support Group.  You may want to look into a support group for parents and caregivers of children with apraxia. You’ll learn a lot, connect, commiserate, and have a unique bond with others. You can start by joining listservs at Apraxia-Kids (www.apraxia-kids.org)  and Speechville (www.speechville.com).  There may even be one in your local area like Windy City Apraxia (http://groups.yahoo.com/group/windycityapraxia/)  in theChicago  area. For help finding a support group, ask your SLP or early intervention team or even consider starting your own (see Chapter 16).
  • Remember that you are not alone. You have friends and family. Rely on them. Ask specifically for their support.
  • Learn about CAS and brush up on terminology that goes along with the diagnosis. You may want to seek out more information than this book provides. Go for it. If you don’t understand something your therapist is sharing with you, ask. You weren’t born knowing everything about speech and language issues. You will uncover lots of terminology and abbreviations.
  • Use coping strategies that have worked for you in the past. Whatever it is—getting a massage, heading to “Fatblaster” at the gym, eating a bucket of popcorn at the movies, or reading a juicy new book—it’s important that you take care of yourself.

What do you do to deal with the “dark days?”  Your ideas and insights may help someone else who is struggling. 

 

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