10 Things I’ve Learned While Having a Child with Apraxia

Four years ago, I was the stay-at-home-mom of 2-under-2. Juggling two babies in diapers while trying my best to be a decent wife and maintain my emotional and physical health certainly brought many challenges. Just when I thought I had a handle on this whole Mommy thing, I learned that the first of my beloved littles has Apraxia.  It was like a punch to the gut – like standing up for the first time after a long-fought battle and taking a kick to the back of the knees. I was worried… I was sad… I (foolishly) blamed myself… it totally sucked.

Over time, I was able to do some research, get connected with phenomenal professionals, and meet other families of children with this diagnosis. I learned a lot about Apraxia and shared seven things I’d learned here:

  7 Things I’ve Learned While Having A Child With Apraxia

Since then, I finished my second Master’s degree.  My oldest started kindergarten. My littlest started Pre-K. I gave up my beloved status as a SAHM and found a new love as a working mom and School Psychologist.  I now have the distinct honor of working with other families of children with learning differences and special needs and advocating to connect them with the necessary resources for long-term success. I’ve also learned so much more about Apraxia and have met some wonderful families and professionals who understand what my family has experienced.

In the spirit of reflection, and with excited anticipation of Apraxia Awareness Day, I have decided to return to share a few more things I’ve learned. Here they are:

The 8th Thing I’ve Learned:

If you’ve met a child with Apraxia, you have officially met one child with Apraxia.

Sure, our Apraxic kids have the diagnosis in common. But it is important to remember that children are dynamic individuals – and because of that, every child’s journey with Apraxia is unique.

The years since receiving the diagnosis have been spent focused on supporting Little Boy through his journey with Apraxia. We were fortunate to become connected with a Speech-Language-Hearing Center at a local university, which gave us access to speech therapy that is specifically designed to treat Childhood Apraxia of Speech with graduate student clinicians supervised by university professors and experts in the field.

Last summer, we participated in an Intensive Speech Program.  Twice per day, five days per week, for five weeks! Our entire family was engaged in the process.  We participated in individual and group therapy sessions, attended parent workshops, had ‘homework’ tasks, and were required to submit progress videos over the weekends. It was rigorous, but very much necessary and worth it beyond words.  Little Boy has come such a long way over this years-long journey.  Some might even say that we’ve reached the end of it.

But even with all of that said – our experience should not necessarily be your barometer. There are children who have progressed much quicker than Little Boy, and others who are coming along in their own time. Two things that have helped me along the way are keeping a Growth Mindset, and remembering the power of “yet.”

The 9th Thing I’ve Learned:

With special needs, often times come evaluations and assessments.  And with evaluations come those dreaded test scores. As a parent of a child who has undergone countless assessments, and also as someone who administers a variety of assessment batteries as a professional, I can tell you a few things with confidence:

1 – Assessment scores do not equal the whole picture of any child.

Whether it’s a cognitive assessment (IQ Test), academic achievement test, or other evaluation measure,

2- Formal assessments cannot measure a child’s motivation, curiosity, creative talent, work habits, or study skills.

3- The performance of younger children and scores received are not necessarily predictive of future ability or long-term success. Consider them a ‘snap shot’ of where they are now, but not a crystal ball indicating where they will be in the future.

While it can be difficult to hear that your child may not be performing as well as their peers in a certain area, try to remember that test scores are one piece of a very large puzzle. (Which relates to my earlier point about our kids being dynamic individuals.)  If we’re keeping a Growth Mindset, consider a low test score as a marker (baseline) for a goal.  It serves as justification for the provision of the support a child needs to be successful. Over time, test scores will become the footprints of your child’s journey that help you look back and see how far they have come and how much progress they have made.

 

The 10th Thing I’ve Learned:

Although some may say that Little Boy’s Apraxia is “resolved” (whatever that means) or that it is now “undetectable” in terms of speech articulation, the truth is that Apraxia will always be there due to the neurological nature of the disorder. For us, we still see Apraxia when we struggle with word finding or grammar.  Handwriting and bike riding are also obstacles we are pushing through (*Sigh!* Motor planning…)

Despite the impact Apraxia has had on our lives, I choose to maintain hope for a bright future for my child. Little boy has experienced challenges that the vast majority of his peers have not had to face for essentially as long as he can remember, yet he continually works hard to the amazement of all who know and love him. He’s an absolute Rock Star in Kindergarten having memorized over 200 sight words! He has overcome odds that were, frankly, not in his favor. He is full of pleasant surprises, such as his humor, love for reading and science, and ability to be a fantastic big brother and friend. If that is not a reason to remain hopeful and optimistic, I’m not sure what is.

 

Sure, on one hand I can lament the things that are still difficult or imperfect.  But if at the tender age of 6 years old, Little Boy can take on the world with such bravery, resilience, and an open heart, then I as his mother have no choice but to learn from his example and continue keep hope alive.  “..And a child shall lead them.”

So, again I say to all the Apraxia Moms and Dads out there, please remember that you’re not alone. The journey navigating Childhood Apraxia of Speech will be both surprising and unique for each of our families. Despite the twists, turns, and potential setbacks, PLEASE, remember to always keep hope alive. You’ll have so many more reasons to celebrate (and people celebrating with you) if you do. May perseverance be your engine, and hope be your fuel.

Let’s keep in touch!

• Comment below with the greatest lesson you’ve learned on your Apraxia journey.
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Thanks for reading! ❤