April 2021 Update: Moving beyond ABCs to explore a world filled with words.
For many of us, learning how to speak comes naturally. For some children, communicating – whether it is verbally or through the use of a communication device – is a skill that is achieved only after many hours of therapy, practice and support from a dedicated team at KidsAbility. You may recall Alex’s recitation of his ABCs as one of our tender-hearted stars in our New Year video message, he’s the boy who sports a smile and a fedora.
Seven-year old Alex has childhood apraxia of speech – a motor speech disorder that makes it hard for him to speak. He has a good understanding of language and knows what he wants to say. However, the pathways of his brain have difficulty sending signals to carry out the complex muscle movements of his mouth. While he tries to form the words, the message can sometimes become scrambled and the sounds don’t always come out the way he wants. This impacts Alex’s ability to speak clearly and causes him to have difficulty processing words and sentences.
“Apraxia is not a common developmental condition,” his mom, Shannon shares. “It was so hard to find resources until we found KidsAbility. We arrived when Alex was 18 months old. We learned about apraxia and what it meant for our son. Instantly we felt supported by his Speech-Language Pathologist who expertly tailored each session to his needs. As we integrated therapy tools at home with a tremendous amount of hard work on his part, Alex’s words flourished.”
Because you and others like you believed in the potential within Alex, his journey is now filled with words, thoughts and dreams. Shannon, describes his progress as “a miracle.”
“If it wasn’t for you, we would have been at such a loss, “she acknowledges. “Your gifts to KidsAbility provide a sense of community and support to families like ours. Thanks to you, our son learned how to communicate with us. For that, we are so grateful.”
Now a graduate of KidsAbility, Alex continues to work hard to build his speech. His greatest successes happen most often when he interacts with others, especially his peers. His confidence soars when he’s solving math problems and playing video games.
“It is so important to us that Alex is treated with respect, kindness and with inclusivity. We want him to have the same opportunities as everyone else. This is something we believe all communities should embody. Our son has shown us how to build a spirit of love, and the courage to share our story. We hope it educates our community about childhood apraxia of speech, and helps other parents with the same, or similar, challenges.”
KidsAbility Ambassador - 2018-2019
From even before he was born, Alexander has faced many challenges. At 22 weeks into Shannon’s pregnancy, an ultrasound revealed that Alexander had extra fluid in the ventricles of his brain. At the time, the doctor told Shannon that it could potentially affect his development, but Alexander was born healthy and “very cuddly” as his mother, Shannon, describes.
When he was a baby, Shannon noticed that Alexander wouldn’t turn his head to the left. After three months of weekly physiotherapy appointments, he overcame this challenge. Alexander continued to meet every milestone even mastering first sounds such as “Ma-ma-ma” and “Da-da-da.” At 13 months of age, he experienced his first of many severe ear infections.
“We were playing the one day and as I looked at him, it was like a light switch went off,” recalls Shannon. “Something was unique and different about him that day. He had been saying ‘Ma-ma-ma’ and ‘Da-da-da’ and suddenly, it was gibberish. That turned into a couple of weeks and then his speaking just stopped.”
At 18 months of age, Alexander was referred to KidsAbility. Initially assessed by an occupational and speech therapist at KidsAbility, it was determined that Alexander’s challenges could be best helped through speech therapy and augmentative communication services for suspected Childhood Apraxia of Speech—a complicated neurological motor planning disorder.
For this chatty, social and tender-hearted four-year-old boy, his twice-weekly appointments with his team at KidsAbility are giving him the skills, the support and the tools to communicate with confidence in a way that makes sense for him forming words with his mouth and with the assistance of a tablet.
One of the most significant milestones for Alexander has been learning how to speak using three to four word sentences. “On his own, I heard him say for the first time ‘I love you Mommy.’ I was in tears for the rest of the day!” says Shannon. “Alexander is proud of being able to do something that he wasn’t able to do before. He can now participate in board games with his sister and he’s proud of being able to be part of the family and can share what’s going on,” says Shannon.
Today, Alexander is relying on his words more than his tablet, which has been a big shift for him. He’s gaining more confidence with independent communication which will be especially helpful for when he starts junior kindergarten this fall.
“KidsAbility has brought back my child’s spirit and who he is and who he can be. Communicating is everything. It has opened up his little world so much,” says Shannon.