The Challenges of Childhood Apraxia of Speech

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Last year, I entered a new mommy club, the club for moms of special needs children. Our son began receiving early intervention services at 18 months old because of a speech delay that I shared with this community last year. By the age of two, we had a working diagnosis of childhood apraxia of speech, and now, a year later, we have an IEP in hand and have transitioned from Babynet (South Carolina’s early intervention provider) to speech through the public schools.

Apraxia is a oral-motor speech disorder, meaning that children who have this generally understand normal speech and even know what they want to say, but they have trouble controlling the muscles and nerves in their mouth to make the sounds they need to communicate the thoughts they have. It is similar to someone who suffers a stroke and has to learn how to speak again . . . except that children with apraxia have this from infancy, and so must learn speech while dealing with it.

As disabilities go, apraxia is among the less serious (although it is one of the most serious speech disorders). It does not threaten my son’s life or health (unless he gets lost and cannot tell anyone his name, or gets sick and cannot tell us where or how it hurts…).

We do not need to care for his physical needs in any special way, and we even have hope that with intensive speech therapy, his apraxia will be resolved, perhaps by the time he is in middle school. All of which makes me feel dreadfully unqualified to even refer to myself as a “special needs mom.”

But even so, this last year has given me a better understanding of what many, many parents face everyday, and I share this today, Apraxia Awareness Day, both as a glimpse into our world of dealing with childhood apraxia of speech, and also because I suspect there are elements of my journey common to parents and children dealing with any kind of special needs.

the challenges of childhood apraxia of Speech

So what is so challenging about parenting a child with special needs in general and apraxia in particular?

The Appointments

We started with one early intervention appointment a week, then added in another for speech therapy and then a second speech therapy appointment when one didn’t seem to be enough. All of this was in our home, so we didn’t have to drive anywhere, but it was still three chunks of time every week that we need to plan for and plan around.

And then there are other appointments.

One week in March, we had those three appointments, a public school screening, and a medical appointment, all in one week. Now we have three speech appointments a week at our local public school, so it is close by, but still a drive. It gets tiring. And although we are fortunate enough to have a great therapist and have speech therapy provided by the public schools, should we ever need to pursue private therapy, that will probably be paid for completely by us — because our health care insurance does not cover speech therapy except for autism or “speech recovery.” Many insurance companies don’t, making the process of getting help for our children a real struggle.

The Rest of the World

The rest of the world, mostly, does not understand our son’s issues. It doesn’t bother us to explain it, so we do, but it does get tiring. And we can’t foresee every miscommunication between our son and other children, or between our son and other adults. I want to shield my son from all of those possible hurts, but I can’t. For now, also, we are his voice to the world, his interpreters. I wonder often if I am doing him justice in this, and I am anxious whenever I leave him in the care of others who may or may not be able to understand him.

The Future

I try not to worry about it. I read the success stories from other parents of kids whose apraxia was resolved by middle school, or at least by high school, but that seems a long way away. And we don’t know for certain. This could be something he struggles with his whole life. I pray, a lot, for him and for the strength to guide him through this to the future that God has for him. But I’m also a mom, and sometimes it worries me.

The Everyday Stuff

Our daily life consists of a lot of very careful listening and watching, as our son uses sign language more than speech. We also have a lot of miscommunication and tears of frustration (him and me!), though using Sign helps us immensely. I never realized how much I took my daughter’s communication skills for granted until that didn’t come naturally to my son. By the end of the day, I’m worn out from it, and so is he, and that is so little compared to what many moms go through whose children have more life-altering special needs than my son.

The Other Hats I Wear

I am not only my son’s mother. I am a wife, a homeschooling mom to our school-age daughter, a director of our Classical Conversations campus, the leader of our pregnancy loss ministry, Naomi’s Circle, an active member of our church . . . all of us have many roles to play. The world does not slow down for us, even though a special needs child adds hours of extra responsibilities to our weeks. I could let go of some of my other responsibilities and involvements, but not everything, and some of those things help nurture my spirit so I am strong enough to help my son. So I try to balance everything, and to ask God for wisdom about what to let go of, if anything.

Where I am Now in our Journey

I am so early into this particular journey that I hardly feel qualified to write about this. Is my son worth it? Absolutely. And that makes the tiring, worrisome days easier, as does meeting other parents of special needs children.

I have connected with other parents through Facebook groups, at church, at MOPS (Mothers of Preschoolers), even through random meetings at birthday parties, and that has been wonderful. To hear other parents say that they can relate and assure me that where I am on this road is normal, and that the days get better, makes a world of difference. We are not alone, and we have the strength to help our children find great joy and success in life.

For more information about Childhood Apraxia of Speech (CAS) see: http://www.apraxia-kids.org/ as well as an article I wrote on my blog, “What Apraxia Really Is“.

What about you? If you have a child with special needs, what is challenging, and what helps?

 

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Kristi Bothur
Kristi is a pastor’s wife, mother, writer, and former public school teacher for English for Speakers of Other Languages. She grew up all over the United States as an Air Force brat, but moved to Columbia in the 1990s to attend Columbia International University, and has called the Midlands “home” ever since. Her days are kept full with the antics and activities of her children - homeschooling, church activities, American Heritage Girls, and Trail Life - as well as writing and leading her Columbia-based pregnancy loss ministry, Naomi’s Circle. Kristi is a contributing editor for “Rainbows and Redemption: Encouragement for the Journey of Pregnancy After Loss” (www.rainbowsandredemption.weebly.com) and a co-author of “Sunshine After the Storm: A Survival Guide for the Grieving Mother“ (sunshineafterstorm.us). She shares her thoughts about faith, family, and femininity on her blog, This Side of Heaven (www.thissideofheavenblog.com).

22 COMMENTS

  1. Thank you so so very much for sharing. My 2 year old son was diagnosed yesterday with apraxia and autism. We started early intervention at 18 months as well and I feel so overwhelmed and panicked. I’m praying that I’m doing everything I can for my sweet boy. Any support, suggestions, groups etc are welcomed!!!

    • Melanie, I know that feeling of being overwhelmed! There are a couple of Facebook groups that I can recommend for support. One is called Apraxia-Kids and it is fabulous! If you are in the Midlands, I can also add you to a South Carolina support group (on Facebook also) for parents of kids with apraxia. It is not big right now, but hopefully will grow. There is also going to be an apraxia awareness walk in September. Is your son receiving early intervention services? If not, I would start there, as they were a big help for us!

  2. I have a son with Apraxia and wondering if there is a special schools, specialist, or speech therapist in the Midlands. I also wanted to know about sfe summer camps that are provided.

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