In our Celebrant training, we begin our three-day training with the age-old “ice breaker”. We do it a little differently by giving each participant a bowl of M & M’s and asking them to choose one. Then, they are asked to tell us about themselves according to the color of their M&M—if you chose blue, tell us about a favorite vacation, if you chose green, tell us what you would do with a million dollars, if you chose red, tell us a most embarrassing moment (that’s always our favorite!) etc. If you chose yellow, tell us about a hero in your life. That one is very interesting and telling. Some people can readily name someone that is a hero in their life, others really have to think about that one. Heroes can be hard to define and even harder to articulate.
If I chose a yellow M&M, I have an entire list of people who have been heroes in my life. But, one of them would be my grandboy, Ethan.
Ethan was the first grandchild/great grandchild born to our family. He was very anticipated and eagerly greeted. But, when he came into the world, he faced challenges almost immediately with respiratory issues on his second day. That was only the beginning of a journey for Ethan and his parents. He had childhood asthma, had to endure surgeries before he was even a year old, and had to be watched so very carefully. Then, we noticed that, as he began to learn to talk, his language was nothing that we understood. He would have long conversations, but we had no idea what he was saying. It was like he had his own private language. He was diagnosed with apraxia.
To speak, messages need to go from your brain to your mouth. These messages tell the muscles how and when to move to make sounds. If your child has apraxia of speech, the messages do not get through correctly. Your child might not be able to move his lips or tongue to the right place to say sounds, even though his muscles are not weak. Sometimes, he might not be able to say much at all.
A child with CAS knows what she wants to say. CAS is a problem with her brain getting her mouth muscles to move, not with how well she thinks. You may hear CAS called verbal dyspraxia or developmental apraxia.
Even though you may hear the term "developmental," CAS is not a problem that children simply outgrow. A child with a developmental speech disorder learns sounds in a typical order, just at a slower pace. If your child has CAS, he will not follow typical patterns and will not make progress without treatment. It will take a lot of work, but your child’s speech can improve.
He entered speech therapy at the age of three, thanks to the public school system, (tell me again why funding public education is not a vital element of our society), and together he and his therapist, with the constant support of his parents and family, made amazing progress. By the time he entered school, he could communicate fairly clearly. He continued to improve, although he will always have a slight difference in his enunciation.
We understood early on that Ethan was an intense and special guy. He fell in love with dinosaurs and watched Jurassic Park so many times at my house that he wore out my VHS tape (yes, 15 years ago we still had VHS). Even when we couldn’t understand the majority of what he said, he could clearly say Tyrannosaurus Rex and Velociraptor.
Then he discovered video games. As a child who had to deal with breathing and asthma problems, sports were never an option for him. So, he became a video game wizard. Name a game system or a game, he has played it and mastered it. His dream career was to be a video game developer.
And we soon found out that he was pretty brilliant. He was reading Jurassic Park and all the Harry Potter books by the time he was in 2nd grade and has excelled in school at every level. As he grew and understood that he had some special challenges, it did not phase him. He found his niche and was content to just be Ethan.
He has a typical love/hate relationship with his younger brother, Parker, but has always been a big brother protective presence for him when life got complicated and confusing. He’s always looked out for him. His mother and father did a wonderful job of keeping their little boy healthy while not making him a victim or permanent patient. They always encouraged him to explore his world and to be a kid.
Children with apraxia can sometimes exhibit timidity and fear of the unknown. After he learned to swim, I took him to the water park. At first, he was pretty scared and intimidated. Then, he climbed up on the big cliff dive, jumped in the water and never looked back. Now he rides all the huge slides that most adults won’t even try.
When we went to Universal Park a couple of years ago, all the rides and sights and sounds overwhelmed him. Then, we rode the first ride and, again, he never looked back and rode everything in the parks. Of course, we had a special moment when we went to the Jurassic Park area and he came face to face with a Raptor. I have a picture of him with the biggest smile on his face.
When he turned 16, he took driving lessons and waited almost a year before he was really interested in getting his license. Last Christmas we got him a car and, again, saw him drive away with the biggest smile on his face.
Now, Ethan is graduating from high school. Pause. . .breathe. . . yes I have a grandson who is 17 years old. OMG. He has taken all the AP classes possible and is a member of the National Honor Society. The last two years he has spent half of his day at the Vo-Tech where he studied computer programming and design. He is also on the Vo-Tech National Honor Society. This is not the Vo-Tech that I knew growing up where underachievers went to learn about car repair. The Vo-Tech program now is very advanced and selective. Students have to interview, maintain a certain GPA, and have letters of recommendation to be included in the program.
The computer students take part in a state level competition and can compete in web page design, HTML coding, graphic elements, job interview skills, etc. His team came in second in the state in web design and he won HTML coding and is headed to the national competition. I don’t know about you, but HTML is just something that pops up when something is wrong with your computer screen. He understands it and is being recognized for his expertise.
He has found his niche and plans to take over the world with his mad computer skills. Of course, he would still love to be a video game designer, but is just looking forward to getting his first job and beginning his next adventure. When I think about this little guy who turned blue when he was 24 hours old, who babbled happily in words that no one understood, who struggled through breathing treatments and hospital visits, the depth of work and effort and the amazing overcoming of personal mountains and valleys, is pretty damn amazing. I’m so very proud of this kid. He truly is my hero. Happy Graduation, Ethan Baer. I can’t wait to see what’s next.
Glenda Stansbury is Marketing Director of InSight Books and Co-Founder of InSight Institute Certified Celebrant Program. She is also a speaker, a trainer, and an observer of life, and one of Doug Manning’s adorable and talented daughters. You may email Glenda at OrdersAndInfo@InSightBooks.com.