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Lisa, Charlotte, N.C.Stars

mother of Jackson, age 10 1/2 and Alaina, age 9

creagerWhen my son was in his early toddler years, we were at a store doing some shopping.  As many folks like to do with a little one, a woman was smiling at my son and trying to engage him in a conversation.  He was smiling and happy but, of course, he did not have any words for her.  To my surprise, the woman started chiding him with phrases like, “What??!! You’re not going to talk to me?  You’re not going to tell me your name?”  As you can imagine, my “mama bear” instincts kicked in but I decided I had two options in that moment.  One was to take the low road and give her a mouthful of what I was feeling at the time, or the second choice which was to be a good role model for my son and behave calmly.  I believe I told her that he was unable to speak to her because he had a speech disorder. That was all I could say without breaking down into tears.  When I got home from the store, however, I created a business card that I could share with strangers or hair stylists, etc. that would explain what apraxia is and how to speak to my son so that he did not repeatedly feel shamed – either by me having to explain about his speech disorder or by inconsiderate adults with whom he came into contact.

When my daughter was about four years old, a lot of folks were not certain that she had apraxia. She had better command of independent sounds but putting sounds together and making sentences was very challenging for her.  I relied on my moma-knows-best instincts and decided to take her to Children’s Hospital of Pittsburgh for a full evaluation by a professional who is well-versed in apraxia.  Because I advocated for her and had that evaluation done, she received services at school that have helped her develop better speech and reading skills.

I truly believe it is important to trust your instincts about your child and to pay attention to all the moments.  It can certainly be easy to fall into the “woe is me” trap, but that only wastes time and creates negative energy.  Patience and perseverance pay off.  What you do for your child is important and can change the trajectory of their lives.  Stay the course and celebrate all that your child achieves.  Every day can be like Christmas if you look at the gifts that apraxia affords. Because I waited years to hear “I love you,” those words are never taken for granted.  Every accomplishment is a big deal.  For that I am forever grateful.  My children have apraxia but they are NOT apraxia.

Apraxia Awareness Day 2