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Experiencing Apraxia Personally and Reliving it With Your Child

My Personal Experience with Apraxia

Published | By
Devona Alexander

Your child has been diagnosed with apraxia. Perhaps others family, friends, complete strangers have already realized that there is something different about the way your child communicates, and it makes you angry, upset, or mad insert your own descriptive language here! Amongst the many questions weighing on your mind that nobody can provide any answers to, there are probably two that are pretty close to the top of the list:

  1. What does this mean for my childs future?
  2. Will my child ever be able to communicate successfully?

While nobody knows what the long-term issues, if any, your child will have, I can answer from the perspective of having been a child who most likely had apraxia – it just wasn’t called apraxia in the early and mid-70’s. Both my younger brother and I had significant speech delays/problems as young children; today, my daughter’s current speech patterns mirror my brother’s so much that it’s almost like being back in my childhood! At one point, we had a therapist who came to the house to work with my brother and I. My middle sister, who didnt have any speech problems, thought she was being left out of something and complained to my mom! After talking to the therapist, my sister was included in the therapy because she was a good role model for my brother and I and it was felt that she could help reinforce what was being taught.

I always considered by daughter to be a good, quiet baby she was just never a noisy baby. As she is my first child, coupled with the fact that my husband was recalled to active military duty during the time our daughter was 5 months 17 months old, it never occurred to me that something might be amiss. I knew she understood me that was evident. She just didnt make any noise. My mother, who has worked in the early childhood field for a number of years, had some serious concerns when my daughter reached 18 months and was still quiet. In talking with my mom, she said that a lot of the things my daughter did (pointing, grunting, having her own “language” that very few understand, etc) is very much like what I did myself at her same age. That is what started the journey that my husband & I embarked on.

After ruling out the obvious hearing issues and the like we decided to have our daughter evaluated at a local university that had provided my brother and I services so many years earlier. That evaluation was done at 18 months, and it did indicate that our daughter was showing some signs of speech delay and/or disorder. It was suggested that we continue to reinforce age-appropriate language practices at home and to have her re-evaluated at 2 years. We were given the option to enroll her in one of the clinics very popular and well-respected speech clinics, but the waiting lists were long and we didnt get in.

Slightly after our daughters second birthday, having since done a lot of research about what our daughter should be able to accomplish from a speech standpoint, something told me that she was continuing to fall behind. The temper tantrums related to the inability to understand her wants and needs were increasing, and there still wasnt anything besides Mommy, Dada and Lilah (our dog). We had a speech screening done by a different social services agency (boy, did it help tremendously that my mother is very involved in this field!). At the end of the screening, the SLP that had come to our home asked if anyone had suggested Apraxia. This was the first time either of us had heard of this. I had the SLP repeat the name over and over again, then had her write it down. One of the resources she gave me was the Apraxia-KIDS website. As soon as she left, I was busy checking out this website. For me, it was an epiphany. Not only did the description of a typical apraxic child fit our daughter, it also described my own struggles with speech production. For the first time in my life, I finally found something that explained what its like when you KNOW what you want to say, and you KNOW how its supposed to sound, but you just cannot get it to come our the way you want. Thats the easiest way I can explain what it is like to have Apraxia.

I can tell you that once we started speech therapy with my daughter, the improvements have been astonishing – this was a child who had perhaps 5 words (okay, approximations) at 27 months and now has real words in her vocabulary! She’s still hard to understand if you don’t know her (and even if you do know her), but she is making progress and the temper tantrums and frustration levels have definitely improved!! My husband and I can have conversations with her that are beginning to truly reveal her wonderful, bright personality. In many ways, its like opening a nested set of gifts, with each gift even more wonderful than the last. She still has a lot of work ahead of her, but I am hopeful that we have started early enough that she won’t have some of the struggles and issues I had as a child with speech difficulties. (By the way, I was in speech therapy starting at age 3 through 6th grade – and vividly remember the torture and torment of my classmates because I didn’t talk like them).

Here’s where I am today – to talk to me now, you wouldn’t know I had speech difficulties to the degree that I did, unless I’m tired or am trying to speak words that I know I just can’t do – and I’ve learned coping techniques that cover up the fact that I can’t pronounce certain words and/or sounds (in fact, Ive been known to ask my daughters therapists for some tips and techniques that I can use to improve my own speech whats good for the goose is good for the gander!). I have my undergraduate and graduate degrees, work in the information technology field, am married to a wonderful man (who is a firefighter and U.S. Army reservist) and most importantly, am the mother to a warm, loving, wonderful, delightful daughter. My brother, by the way, is the owner of his own successful welding business, and is working on obtaining his undergraduate degree.

So – to answer your question about whether or not your child is going to have severe problems – who knows?!?! But it is possible to DO SOMETHING about this. I know in the case of my brother and I, we had a very, very strong advocate in our mother. That is what made the difference for both of us, especially since neither of I had the advantages that IDEA currently provides todays students and their parents, nor was there such a concept known as early intervention then. If you’re willing to advocate for your child, and PUSH for what she needs, even when nobody else agrees, she will be able to be a productive, happy, and healthy member of society. Look at it this way – we all have obstacles and issues we have to overcome in life; this is going to the first of many for your child. It’s just coming much earlier in her life that I’m sure you had ever hoped for!

I truly hope knowing that there have been “others” who have survived – and thrived – will make this journey you’re about to undertake with your child easier to manage. Please don’t hesitate to reach out whenever your need support – that’s part of the purpose of