A random mom at a kids’ play gym made me cry. She was trying to get my son to count with her, and I knew he wouldn’t because he hadn’t said a single word yet. When I said he couldn’t count, she asked how old he was, and I lied—I said he was two when he was actually almost three. Her face said it all, and I realized that, yes, something was amiss.
Understanding Apraxia
Apraxia was not on my radar. When the developmental pediatrician said apraxia was the reason he wasn’t talking, I was dumbfounded. Naturally, I dove into books and research to learn more about what this thing is and what I need to do to help him speak.
Human connection requires communication, but verbal communication is a far greater challenge for some children. Childhood Apraxia of Speech (CAS) is a neurological disorder that affects a child’s ability to plan and produce the precise, coordinated movements of the tongue, lips, jaw, and palate necessary for intelligible speech. Children with CAS have difficulty coordinating the muscle movements required for speech. This means that while they may understand language and want to communicate, their speech may be severely limited, unclear, or inconsistent. While apraxia is a rare condition, its impact on a child’s development and ability to communicate with the world around them is profound.
Apraxia: So Much Speech Therapy
While there is no cure for CAS, early and intensive speech therapy can greatly improve a child’s communication abilities. Speech-language pathologists (SLPs) develop individualized therapy plans tailored to each child’s specific needs, focusing on improving motor planning, coordination, and sequencing of speech sounds. Recent professional articles suggest the most effective therapy often involves a multi-sensory approach, incorporating various techniques to better meet the child’s needs by connecting with the child to elicit more speech.
Jackson started speech therapy around his third birthday. His SLP taught him useful sign language like “please,” “help,” “all done,” and “more.” This was groundbreaking for all of us because he was communicating! Finally, he had the ability to ask for help and make simple requests. When she suggested teaching him signs for farm animals, we graciously moved to a different SLP. This is when I realized my approach to his therapies was purely pragmatic. He – we – needed effective communication.
In the midst of these therapies, he was diagnosed with autism, another neurological disorder that affects speech and communication. When his sensory needs were becoming more evident, we incorporated occupational therapy. With the speech and occupational therapies combined, Jackson said his first word, “go,” which I recorded and watch occasionally to remind myself what he’s had to work so hard for.
New Move, New Therapist, New School
Each PCS as a military family means searching for an SLP familiar with treating apraxia. Because it’s a rare disorder, most SLPs only have a peripheral understanding of the disorder and very rarely have experience treating children with apraxia. That’s frustrating. Even more frustrating is that school-based speech therapy does not reflect evidence-based therapies for children with apraxia, and, AGAIN, I’m educating professionals about what he needs to progress. To complicate matters, he received an additional diagnosis of dysarthria (yet another motor speech disorder) just a few years ago.
Challenges and Triumphs
Our journey as a family with a child with CAS consists of challenges and triumphs. Progress is slow and gradual. My son, and anyone he encounters, needs patience and persistence. Every small improvement in his speech clarity and communication skills is cause to celebrate.
For many children with CAS, early intervention and ongoing speech therapy significantly improves their communication abilities. As Jackson gains confidence in his speech abilities, he can better participate in social interactions, school life, and everyday activities. Just recently, he’s started being funny and coy. Like if I ask him to get ready for bed or say it’s time to leave, he’ll respond with “no thanks!” or “I’m busy!” with a huge smile and giggles.
The greatest challenge is seeing my son struggle to speak. He still has quite limited verbal skills, and, as always, I’m still learning how his disabilities intersect and affect him as he develops. Last summer, I decided he wasn’t going to speech therapy over the summer – we all needed a break. His recent growth spurt and move into 7th grade next year have spurred me to pursue therapies once again. He needs it, but most of all, he deserves it. I’m far better equipped mentally and emotionally than I was seven years ago.
Advocating for Awareness and Support
Raising awareness about CAS is essential for early identification and access to appropriate interventions. Educating parents, educators, and healthcare professionals about the signs and symptoms of CAS helps ensure children receive timely evaluations and support. CAS presents unique challenges, but with early intervention and dedicated speech therapy, children with CAS can make significant strides in their communication abilities. Every child needs support on their journey to unlock the power of speech and communication, ultimately providing an avenue to connect with the world around them.
Here’s the hard part – new information comes out all the time. I do what I can to keep up with new information, but it is exhausting and frustrating when new information differs from what I thought I knew. All these years and sometimes I feel like I’m at square one. But this is what it is. My kids’ disabilities will change as they age and it’s up to me to seek knowledgeable professionals to weigh in. New information might bring greater insight, a different approach, and most importantly, a greater chance at Jackson becoming fully verbal one day.
About the Author: Crystal Mahany
A proud wife to an Army Aviator, Crystal has served the military community in many capacities over the last 21+ years and is committed to serving until and beyond her soldier’s retirement. She strongly believes in serving military families and the surrounding community at each duty station.
In 2014, doctors diagnosed her oldest son with a rare speech disorder and Autism. Two years later, they diagnosed her youngest son with the same speech disorder. These diagnoses thrust her family into the Special Needs and Special Education community. Driven by her passion to help, Crystal returned to school and focused her research on Civil Rights, Disability Rights, and Special Education Law.
Crystal has worked as a paralegal, advocate, and legal analyst in Special Education Law, facilitated panel discussions on protecting the most vulnerable, and taught courses on Special Education as a Civil Right, the importance of the 10th Amendment, and Disability as a Tenet of Diversity. She has been with Partners In PROMISE since its founding and currently serves as the Research Editor, Legal Analyst, and Parent Mentor. Crystal is deeply committed to policy changes to advance education policy and Disability Rights and works as Adjunct Faculty at The George Washington University.
Leave a Reply