A fellow “apraxia mom” has kindly and generously shared her thoughts on what it means to have a diagnosis of apraxia…and why professionals may be hesitant to diagnose the disorder. Please keep in mind that this is Ms. Moll’s personal experience and opinion, which may differ from yours. I love, love this quote from Ms. Moll, “What matters is that each child is getting the right amount and type of support to help them reach their greatest potential.” Read on to learn more. Thanks for sharing, Amy!
Is it apraxia … or something else?
As months tick by since Brooke was officially diagnosed with apraxia of speech at 2y3m (she’s now almost 3y5m) one thing that I have routinely noticed throughout all of our doctor visits, therapy appointments, and developmental evaluations is that they are all hesitant to label a child. Which really is outstanding, for so many reasons!!
One of our biggest fears when we first noticed Brooke had developmental delays was that she was going to be labeled – correctly or incorrectly – and that it would “stick” and forever change the way people see her. And it has been nothing short of amazing to see that the exact opposite has happened … that labels are not slapped on without significant thought, and even when they are applied, it does not seem to impact how people treat her.
One of the reasons I think that professionals are hesitant to give a child a label or an official diagnosis is because what may look like one disorder in one setting may look like another disorder in another setting. I was reminded of that just this afternoon when Brooke went to her first itinerant speech therapy session this school year. I was talking with her speech therapist afterwards about Brooke’s challenge with getting her lips together for bilabial sounds like /m/, /b/, and /p/. I mentioned that it was could be hard for her due to her global low muscle tone, and the SLP agreed.
Which got me thinking … could Brooke’s apraxia have been better attributed to a combination of low muscle tone and sensory integration disorder, specifically in the area of auditory processing? After all, if you were to visit the Apraxia Kids website, you’d find whole bulletin boards devoted to conditions that kids commonly have in conjunction with apraxia: ADHD, autism, dysarthria, sensory integration, and more.
What all of these conditions have in common is their connection to the neurological system. And much like autism is a spectrum that manifests in multiple ways and differently in each individual, these neurological disorders also present in so many varied ways – no one child is like the other. To borrow a phrase from the autism community: “If you’ve met one child with a neurological difference, you’ve met one child with a neurological difference.”
But really, what it’s called doesn’t matter. And I think the professionals understood that long before I did. With the exception of a formal diagnosis to secure services or insurance funding, a label really doesn’t matter. What matters is that each child is getting the right amount and type of support to help them reach their greatest potential. Over time, as Brooke sped up and slowed down along her individual developmental path, we’ve brought therapies in and out and increased and decreased frequencies of each as dictated by what her current abilities and challenges were at the time.
Ultimately, what matters is that each child has support necessary to maximize their potential. While I admit there is often an emotional reason for wanting to know what “it” is called, I maintain that your energy is better spent focusing on this one question: “Is there anything else my child needs to be all that s/he can be?”
Next Week on “Apraxia Monday:” I will present some new information on early intervention/”waiting to see” from Teri Peterson, CCC-SLP and author of “The Big Book of Exclamations”
Also in “Apraxia World”: Wheaton, Il workshop “Childhood Apraxia of Speech: Current Guidelines in Diagnosis and Treatment” with featured speaker, Donna Lederman, CCC-SLP. October 15th. $150 for parents. Sign up through the Apraxia-Kids website.
Chicago Apraxia Walk , October 16th sponsored by CASANA with WindyCity Apraxia.
“Apraxia 101” Fall Group now forming!! Contact me firstname.lastname@example.org for more information or to register. It’s FREE!! Meeting at Suburban Pediatric Therapies in Aurora, IL.
“Small Talk Meet Up Group” If you were in the “Apraxia 101” group last fall, I invite you to join us at Caribou on N. Eola Road in Aurora, IL for the first annual Small Talk Meet Up Group. This will be a kid-free evening event, date to be determined. Contact me at email@example.com if interested.