Apraxia has made a major impact on our family. Today I am going to share how.
Apraxia, also known as Childhood Apraxia of Speech (CAS), is a neurological motor speech disorder that has affected our son, Eli. Apraxia makes it difficult for Eli to make the oral movements required to speak appropriately. The difficulty begins in his brain, and the transmission of nerve signals to his muscles are either interrupted, or don’t travel smoothly. Apraxia of Speech affects expressive language–which means that affected children can hear and understand language, but have a hard time expressing themselves. The child certainly has thoughts and opinions, but the process to get those ideas out is extremely difficult. You can compare it with having their mouth taped shut.
The severity of Apraxia can vary greatly in children and is best treated with intense Speech therapy with an experienced Speech-Language Pathologist. The prognosis varies greatly, but most children eventually learn to speak clearly or with little residual effects. There are, however, some children who will never overcome Apraxia, and will therefore rely on other forms of communication.
Eli, who is now five years old, has been diagnosed with Childhood Apraxia of Speech since he was three years old, however it was suspected much earlier. His Apraxia is severe and impacts his life (and our family’s) tremendously. Eli is generally nonverbal, but he can say a few functional words and he can make many sounds. Eli regularly verbalizes ‘Mama’, and ‘Want More’ (wan-ma). He can produce sounds like ‘Ba’ that he uses for ball, Bella (our dog), and bye. He can say ‘Ride my bike’ (ry-ma-ba), and ‘Eat’ (eeee). He can sing (lalala), make animal sounds (growls, grunts, and roars), and imitate some vowel and consonant sounds. Recently, I have even heard him yodel. 🙂 Just last month Eli learned to say ‘Dada’ consistently. His Daddy has been waiting a long time to hear those words. Although he is limited verbally, he has surprised us with random words (but appropriate to the situation) like ‘Grandma’, ‘Vacuum Cleaner’, ‘Dinosaur’ and ‘Elephant’. This is evidence to us that the words are in his brain, but he can’t express them consistently in a functional way.
To help Eli communicate we teach him sign language. He has approximately twenty-five signs that he uses regularly, appropriately, and effectively. Since he has motor planning delays (Apraxia is just one way that they’re manifested), it is difficult for him to learn and imitate signs that require fine motor movements, however, he does well with signs that are simple and have gross (large) motor movements. Eli also uses picture boards to communicate his needs to us, and he tends to find pictures in books and magazines to express his thoughts. He has even made up his own gestures and sounds for words. We have tried Picture Exchange Cards (PECS) many times, but because we are working with cognitive and developmental delays in addition to the Apraxia they have not been as helpful in the past. We will probably give them a try again in the future.
Eli has been in many different types of therapies since his first year of life, and Speech therapy has definitely been among them. He is currently receiving Speech and Oral Motor therapy twice a week. He also receives Occupational therapy, which indirectly helps with his Apraxia. His life has been a whirlwind of appointments with therapists and specialists. The same goes for mine and his big sister’s, who has tagged along to most of them. Big sister, Niah, has also gotten to be a part of some of Eli’s therapies, and she has been a tremendous help as a role model to us. She loves being the guinea pig (it’s all play for her) and enjoys the attention of being the big helper. She also knows more about the different types of therapies than a seven year old probably should.
Sometimes I feel like our lives revolve around therapy.
Thanks to therapy and lots of practice at home, Eli does have some ways to communicate, although he struggles with expressing himself effectively and accurately. How would you feel if you couldn’t speak, but wanted to? I would be frustrated and probably even angry. Those are big emotions for a little boy to deal with appropriately. How do we typically teach our toddlers and preschoolers to express their big emotions in a healthy way? We teach them to use their words–to communicate their feelings instead of act on them. But a child with Apraxia is left with big emotions because of frustrations and no words to process them. This leads to the perfect storm. Eli deals with frustration and anger and as a family we have to work hard to help him manage those emotions–and frankly it can be difficult and exhausting at times. Eli is such a happy, smart, funny little boy. His smile is infectious and he brings joy to everyone around him. People always ask me if he is always this happy. My response? He is…until he’s not. He fluctuates between complete happiness to extreme frustration. There is no in between for him, and his frustrations are justified. Apraxia is to blame for his emotional outbursts, but it is not the only special needs issue we are facing–it is compounded by others.
I do not know what the future holds for my amazingly smart, handsome, funny little boy–but I have high hopes for him. As a mother of a child with Apraxia, the days can be difficult and the future can be daunting, but I rest in the fact that there is progress being made. Slow progress. But we are not moving backwards and that is enough to keep my hope kindled. Just yesterday Eli seemed to carry on a short conversation with me through his babbles, jibber-jabbers and motions, and these interactions lead me to believe that one day he will speak and be understood. Until then, I pray daily for Eli’s mouth to be opened, for God to work in his life, and to give us the wisdom and patience to keep moving forward. I know he was created for a purpose that even Apraxia cannot stop.
Every child deserves a voice. Apraxia does not have the last word.
Because it’s more than merely motherhood!