ApraxiA MondaY: Summer Re-run Series–10 Things I Wished I’d Known

By Leslie Lindsay

This post first ‘aired’ in June 2013 on Playing with Words 365 hosted by Katie Yeh, CCC-SLP. Here it is again in case you missed it.

10 Things I Wished I had Known About Apraxia

When I look back over the years of our apraxia journey, I am reminded of the simple truths I wish I had known long ago, wholesome happy moments that really have little to do with apraxia and more to do with being a mother, a child, and a family. Here goes:

• A child is a child no matter what. I may have wished for a perfect child who was above average in all their pursuits, but what fun is that? Perfection has its downsides; I’d rather a child full of whim and vigor, a child who needs to overcome obstacles to understand that not everything is easy-peasy achievable in this life.

• I am a mother first and an advocate second. It may seem as if there’s little differentiation between the two, but I like to think that first I became a mother; providing snuggles and love, safety, food, shelter and clothing. And then I became an advocate, seeking ways to help my child be the best she can be in terms of her speech development.

• As a family unit, we work together. Apraxia is a family affair. We learn, we help, and we interpret together. Sure, it can take its toll on us just like everything but it’s important that we all pull together to help our Team Apraxia.

• Extended family is important, too. Don’t forget grandma and grandpa. Educating them about apraxia and how it affects your family is key, no matter how far or close you are in proximity. Extended family can provide a wealth of support—emotionally, physically, financially, and practically. Perhaps grandparents can assist with getting your child to and from speech therapy…maybe they have stories to share of past generations with speech troubles. Try educating them on apraxia and having them work with your child to practice their sounds. Maybe you just need to bend their ear.

• Speech Apraxia is serious, but it’s not the end of the world. When I first heard the term ‘apraxia,’ I didn’t know what to think. Was this a big deal, a little deal, or somewhere in the middle? Was it like stuttering or a lisp? I was really in the dark. Had my diagnosing SLP told me, “this is serious, but we can work with your daughter to make it right,” I may not have freaked out.

• Take what you find about CAS (Childhood Apraxia of Speech) on the Internet with a grain of salt. That, said there are a lot of great resources on the Internet…and some not-so-good resources. Be critical. Don’t assume that just because you read it on the Internet, it’s the be-all-end all. Ask questions, look at multiple sources, go to the main source. And beware of well-known, reputable websites as well. When I hopped on for the first time, I was overwhelmed and panicked. Would my child ever be able to talk? Would she ever be considered “normal?” I catastrophized, and wished I hadn’t.

• It’s okay to get your child involved in activities with other kids. Encouraged, even!! At times you may be reluctant to keep your child away from social experiences in which he is required to speak (birthday parties without you, community education, preschool, library programs, sports, dance). While it may seem like you are being an advocate for your kiddo, it may actually hinder his ability to be in control of his own apraxia. It teaches self-monitoring, independence, and self-actualization. Equip your child with a few functional phrases beforehand, though (Eg.,“Wait!” “My name is ___,” “Hi,” “Want to play?” “Okay!” If your child is more nonverbal than that, teach appropriate body language like nodding or shaking her head, smiles, waves.) 

• It’s okay to ask for help. When you feel stuck, reach out. You may find that a group, your child’s SLP, or special needs teacher can help you identify ways to make things easier and better for you, your child, and your family. A tutor, babysitter, student (speech pathology, special/education, nursing, or retired SLP) can be a life-saver when it comes to practicing speech work, or just respite care. It takes a village to raise a child!

• If you have other children, remember they need you, too. If you need to bring other children along to the speech waiting room, bring something fun the two (or three) of you can do together while you wait. Coloring books, reading, a small craft, puzzles, a quiet toy; or consider a quick dash to the playground or ice cream. You are just providing different needs for different children.

• Childhood Apraxia of Speech Does Get Better! Not all kids will gain speech growth in the same manner, but they do get better. This is a wonderful thing! There’s a reason it’s called ‘childhood’—the duration of CAS is typically birth thru 8 years. It could be a little less or a little more, depending on your child’s personality, determination/motivation, overall intelligence, access to therapy, home practice, and co-occuring disorders like AD/HD, autism, Down’s syndrome, anxiety, etc. Sure, your child may slip up from time to time on challenging words, when they are tired or stressed, or learning a new set of vocabulary (math terms, history, science), but overall your child’s speech should be on-par with peers around age 8.

Most of all, I’ve learned that love and time really can “cure” a lot of things.

For more information, look for Leslie and SPEAKING OF APRAXIA on:

• Facebook at: https://www.facebook.com/pages/Speaking-of-Apraxia-A-Parents-Guide-to-Childhood-Apraxia-of-Speech/235772599837084?ref=hl
• Follow on Twitter at: Twitter.com/LeslieLindsay1
• Read her website/blog at: speakingofapraxia.com where every Monday is “Apraxia Monday!”
• Books are available thru Amazon, Barnes & Noble (in-store and on-line) and Woodbine House.

Bio: Leslie Lindsay is a former Mayo Clinic Child/Adolescent Psychiatric RN and a mother of a daughter with CAS. She is also the author of the Reader’s Choice Finalist & ForeWord Review Book of the Year Finalist SPEAKING OF APRAXIA (Woodbine House, 2012). She lives in Chicagoland with her family where she is busy working on her next book, this time in the fiction genre.