As part of the 2023 Connecticut Walk for Apraxia, team Maverick’s Wingmen was recognized as a Grand Champions Club member for fundraising over $5000 for Apraxia Kids.  Funds raised through the Walk for Apraxia are crucial to supporting the development and growth of our programs, which are often offered for free or low cost.  The Walk for Apraxia is our leading initiative to raise awareness and acknowledge individuals with apraxia of speech while having fun!

Maverick’s mum, Alyssa Ryan, shared the story about their family’s journey with childhood apraxia of speech thus far, and their special way they celebrated Maverick’s success during their local Walk event.

The Road to Diagnosis

Before Maverick was diagnosed with [childhood] apraxia of speech, I used to joke that he and I could speak to one another telepathically. Maverick and I have been together since he was born. I’m a stay-at-home mum so we are never apart. He never would have to verbally ask for a toy, his drink, or snack. I thought perhaps I was just over observant. He’d be playing for a long time, and I’d think, “he’s probably thirsty, let me hand him his drink… or he must be getting hungry, I’ll go get his lunch ready now… or he left his favorite stuffed animal upstairs, I’ll bring it down for him”. I had family members tell me that I was being too good of a Mum and needed to just wait until he asked for something, or he would never learn how to talk.

I wasn’t too concerned about his lack of speech right away. I grew up taking care of children – babysitting, working at an overnight summer camp, and as a nanny. I told myself, it’ll all come in time. He’s a boy and most of the boys I cared for under the age of two didn’t speak that much or at all. I was comparing, but as a first time Mum it’s all I could really do. On April 21, 2022, our pediatrician wasn’t concerned either, so it made me think all was well. I have learned that most pediatricians are not trained in speech. At the time, I was not aware of this until I spoke to a speech therapist, and they brought it to my attention. Luckily, I have a pretty laid-back pediatrician, and he said if I was concerned then he would refer us for a hearing test in order to get approval for Early Intervention. He was leaving the decision up to me.

Therefore, Birth to Three did their evaluation on Maverick. They came to our house here in Connecticut for one and a half hours. After all their questions and observations, they added up his score. To our surprise, he didn’t qualify for Birth to Three! My heart sank! My son is not speaking, and they are supposed to be helping me! I expressed my yearning for their help in providing therapy to my son. They too wanted to help but Mavericks’ receptive language was too strong.

We have a renowned speech therapist on my husband’s side of the family. After my husband and I began our suspicions that maybe our son does have a speech delay, we decided to contact her. We had her observe him on zoom calls. We set up the phone angled down onto the floor and just played with our son while she watched. She had a hunch but wanted to assess him in person. A month or two passed and we had her come over to our home in Rhode Island on July 8, 2022. Maverick was only 21 months old. She used a handful of tools on his mouth which I had never seen before. She was checking his muscle movements involving his mouth. Once she completed her assessment she spoke to my husband and I and said that her assumptions were proved to be true. She told us that Maverick has apraxia. I had no clue what that meant. She explained it all in a drawing. She drew a brain and showed us how he was learning words. When he would try to say a word, his brain was scrambling the wires that control his mouth on how to say said the word. My husband’s first reaction was to question if this was normal or common, and what did we do wrong? The answer – this is not normal; it is not common and we didn’t do anything wrong.

I listened to everything she was saying to me, and the moment she said goodbye while closing the door to leave, I grabbed my iPad to begin searching for a speech therapist specializing in apraxia. I didn’t Google the meaning of apraxia or go down the rabbit hole of the internet reading about it – I didn’t want to begin reading anything that could put a negative twist on what I was just told. The internet can be a negative black hole sometimes and I just didn’t want any fear mongering.

While searching for a specialist I remember the search engine taking me to apraxia-kids.org and I was scared to push on the tab that said, “New to Apraxia”. I was on a mission to find the help my son needed. The Apraxia Kids website was and is a wonderful source and a great starting point!

Educating Others is Important!

It’s important to know about apraxia because typically the first time someone ever hears, “Childhood Apraxia of Speech”, is when their child is being diagnosed with it. Raising awareness of CAS can help parents, grandparents, family members, friends, teachers, pediatricians, and politicians understand upon their loved one being diagnosed. The parents can then take the necessary steps needed for early intervention and seek out the support they are going to need. I spoke to my local legislators regarding the future of our children who need early intervention. Sharing Maverick’s story with them helped connect on a personal level, and it opened their eyes to a speech disorder they had never heard of before.

Proclaiming May 14th to be Apraxia Awareness Day was also very important to me as his mother, before he goes to school. My hopes are that when he is in the classroom setting that his classmates grasp a better understanding of the disorder. Making it a part of their curriculum that day, they could all read a children’s book on CAS, perhaps wear blue in honor of the day, and complete a fun activity like trying to communicate with one another in the classroom without using their voices on to talk.

Team Maverick’s Wingmen Celebrates

The 2023 Connecticut Walk for Apraxia was our first walk! Maverick’s Wingmen is our team’s name! He loves airplanes and since his name is Maverick we went with a Top Gun theme. We loved “recruiting” people to become one of Maverick’s Wingmen! His birthday is September 12th, and our walk was on the 10th so we had the walk be his 3rd birthday party! We had a huge turnout! We had family from Rhode Island come, friends from New York, Grandparents from Florida and Washington DC and all our local friends and family! We kindly asked everyone to donate to Apraxia Kids instead of giving him a gift. It was truly such an amazing day being surrounded by such wonderful love and support. I loved being surrounded by other families going through the same thing so much that when I was asked to be the Walk Coordinator for 2024, I didn’t even hesitate – YES!

Grand Champions!

I shared a lot during Apraxia Awareness Month on my Instagram. So many of my friends and family members had never heard of this Speech disorder so they were intrigued. Most people have never heard of childhood apraxia of speech, which works to our benefit when trying to spread awareness because we already have the hook to draw them in!

Besides my social media approach, I even contacted older family members that aren’t on the internet and simply shared Maverick’s Wingmen’s Team Page. I personalized his page and shared about his journey and some simple facts about CAS. I received good ol’ handwritten checks in the mail by some of those. I also created a QR code where people only had to scan it with their camera on their phone and it would send them straight to our Maverick’s Wingmen Team Page to donate. I also had flyers and a yard sign made with that QR Code on it with intentions of using both for a lemonade stand I built! I was very excited to do this with Maverick, but in the window of time we had to sell lemonade, we had lots of rain or other events that took up our time. This year we will definitely be using the lemonade stand!

Another great way I raised money was by participating in our town’s Tag Sale. I sold all the baby clothes my boys outgrew and some toys they no longer played with. We also had a very generous donation come in one day from another team. They knew we Maverick’s Wingmen were very close to reaching Grand Champions and they wanted to help us get there! With their donation we surpassed Grand Champions (raised over $5000)! When I got the text notification of the donation I gasped and just began sobbing very happy tears! Maverick saw me crying and asked me, “Mummy big happy?” Which is what he calls happy tears.

Share Your Passion & Celebrate

Don’t be afraid to ask anyone to donate! If you share your passion with others, they will see it and feel it! I also like to set segmented goals. So instead of just right off the bat of setting a goal of $5000, instead I set my goal to be $500. Once I reach that, I celebrate and share my excitement in celebrating with others and then set a new goal of $1000, then $1,500, $2,000, and so on and so on. It’s fun to celebrate every part of fundraising! I really hope that Maverick’s Wingmen can reach Grand Champions again this year! Just be your true authentic self, have fun, and be grateful!

Accept, Continue On, & Reach Out

My best piece of advice to anyone with a loved one who has apraxia of speech is this; 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. There are other forms of communication, and you will find which one works for you. It hurts not getting to hear them say, “I love you”. But, one day they will! It may take months or years, but when they do, the meaning will be even more powerful! It may not be an intelligible I love you, it may be “I Zu Zu”, but I’m telling you it will melt your heart! Not only that but time will pass, and they will continue to grow not only in age but in their verbal capability and their cute little errored words they use will correct and you’ll miss the “I Zu Zu’s”.

You will have hard days. Days where it feels like there is no one else in the world besides you and your child, because only the two of you can communicate to one another. Remember there is a wonderful community, online and within your state, of other families going through the same thing as you. I love sharing hope and encouragement to other Mums on social media, don’t be afraid to talk on these platforms.

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