Have you ever heard of apraxia of speech?
A few years ago, before my nephew’s diagnosis, I hadn’t either. Childhood apraxia of speech is a neurological disorder that affects speech. It is considered rare and very difficult to overcome.
My nephew’s story
When he was a toddler, Zane wasn’t very verbal. He had a difficult time expressing himself. He would resort to tears of frustration when he couldn’t make himself understood. Friends would say he was probably just a late bloomer. Someone once remarked that Einstein didn’t speak until he was four.
However well-meaning those comments were, they didn’t help to relieve my sister’s growing suspicions. She sensed that something wasn’t quite right with Zane’s speech development. Megan has now worked with kids who have special needs for over ten years. Though Zane’s symptoms weren’t representative of any condition she was familiar with, she knew he needed help.
An elusive diagnosis
By the time Zane turned two, seeking evaluation had become an intensive project. Months of phone calls and appointments first resulted in being told Zane had a minor speech delay. At the time, it didn’t measure significant enough to warrant intervention. Guidelines stated that only children over age two who had more severe skill gaps qualified for services. Another evaluation was scheduled to check on Zane’s progress a few months later.
When a diagnosis means hope
Finally, at the age of 2 years and 4 months, Zane was evaluated again and the condition apraxia of speech was discussed.
Megan was relieved, because finally there was a definitive explanation for Zane’s speech challenges. Diving into every available online source, she soon found CASANA (Childhood Apraxia of Speech Association of North America) and latched onto their resources. Though he didn’t yet have an official diagnosis, Zane began attending intensive speech therapy.
He was later diagnosed with severe/profound apraxia at age four and a half.
Challenges of living with apraxia
Megan says the biggest challenge she and her husband have overcome with Zane’s diagnosis is trusting others to be Zane’s voice when he went off to school. We know that kids who are less verbal have less opportunity to make choices and have their needs or desires known. Apraxia keeps kids from effectively articulating their thoughts into understandable speech, making communication difficult, if not impossible.Apraxia keeps kids from effectively articulating their thoughts... making communication difficult. Click To Tweet
Progress in Leaps and Bounds
Luckily for Zane, his progress over the last three years has been remarkable. He is now considered to have mild/moderate apraxia. Megan commends Zane’s program coordinator for providing every resource the family has requested, and notes that her family has been lucky in their ability to access resources through Amador County’s programs. Of course, Zane takes the most credit for his hard work in speech therapy!
After years of worrying about Zane’s future if he was never able to speak, Megan now has some advice for parents of kids facing an apraxia diagnosis. First, trust your gut. When Zane was diagnosed, Megan says it felt good to finally be validated, instead of being looked at like she was crazy.
Parental intuition is huge, and seeking help from a qualified speech language pathologist will get families on the path to answers. Finally, Megan reminds all parents that the most important thing for all parents to do is have hope. She never could have guessed that Zane would make such strides in his speech development.
While not every child will have such quick gains, any step forward is important progress.
Join us at a Walk for Children With Apraxia!
CASANA is a non profit organization committed to providing funding to create awareness while providing information for affected families, educators, and research scientists.
Zane and kids like him are often overlooked due to an assumption that being quiet means they’re shy, or that not being able to speak clearly means they’re unintelligent. Walk events spotlight these kids who fight to speak. These events give them a chance to be acknowledged for their struggles and to mark their progress.
This year’s Northern California Walk for Apraxia took place on May 14th at Amador High School. Read more on 2017’s walk here.