When her son Maverick was still an infant Alyssa Ryan began to suspect he had a problem with his speech.
“I worked as a nanny in college and I was always around infants who were learning to talk, so I realized something was wrong. He wanted to talk, but he couldn’t. When he would attempt it, he would make quiet child noises instead. He would point and make noises and though he would say random words sometimes, we couldn’t get him to repeat them.”
In July of 2022, Maverick was diagnosed with childhood apraxia of speech, a neurological disorder that affects about 1 in every 1,000 American children. CAS becomes apparent as a young child is learning speech and is often misdiagnosed because of its relative rarity. Children diagnosed with it typically have a good understanding of language and know what they want to say, but have difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate necessary for intelligible speech.
Maverick started intensive speech therapy in August of 2022. At the time, his only words were “Mama” and “Dada,” but over the years “he’s learned how to produce the sounds needed to form words,” Alyssa says. “He has come so far and loves to talk about his many interests: Buzz Lightyear, Battleships, and Pirates! Fourteen days after his third birthday he said his name for the first time! Maverick now loves to learn people's names and how to say them. When he's struggling to get a word out he can now communicate to me, “Mommy, I need help.”
The Glastonbury family, which includes Maverick's father Sean Ryan and his one year-old brother Bowen
, has become so active in raising awareness of the disorder that the town last year designated May 14 as Apraxia of Speech Day and issued a proclamation in Maverick’s honor.
“He was like the star of the night and he really enjoyed it!”
The state also later issued a similar proclamation, she added.
Alyssa will serve this year as the coordinator for the Connecticut Walk for Apraxia, which takes place Sept. 22, at the New England Air Museum. Last year, she says, Maverick’s Team, Maverick’s Wingmen, raised $6,762 and was the top fundraising team in the state, earning him the title of Grand Champion.
“It was our first year attending the walk and we loved being a part of such a wonderful community of families that I decided to take on the role for this year’s Walk Coordinator.”
Alyssa says she hopes greater awareness of the Childhood Apraxia of Speech will help create a greater sense of kindness and acceptance for all children and the struggles they may be facing.
“I hope people will have grace with children, be patient and accepting of all, because you don’t always know what children are going through.”
For anyone with a loved one with the disorder she has this advice:
“Learn Acceptance. You will have days where your heart breaks for your child because they can’t communicate what they are wanting, needing, or feeling. It hurts not getting to hear them say, ‘I love you.’ But one day, they will!”
For more information you can visit Alyssa's Instagram,@lexvold.ryan To donate to Maverick's walk team visit Community.apraxia-kids.org/goto/MavericksWingmen.
Maverick now loves to learn people's names and how to say them. When he's struggling to get a word out he can now communicate to me, 'Mommy, I need help.'