May 14th is Apraxia Awareness Day! Never heard of Apraxia? Keep reading as I share a little about what Apraxia is and how it has affected my family.
In simple terms, Apraxia is a neurological condition that causes difficulty with motor movements. Motor planning is the process that happens when the brain wants to do something, sends the signal out to the part of the body responsible for doing it, and completes the task. For instance, if you want to pick up a book, your brain must see the book, decide to pick it up, send the correct signal to your hand to reach for the book and your hand must carry out the process of picking it up. When there is a delay or a disruption in motor planning these simple processes become very difficult. Apraxia can affect any muscle or motor area in the body. A delay in motor planning affecting speech is called Apraxia of speech.
A child with Apraxia of speech knows what they want to say. They have thoughts, feelings, and opinions that they want to share, but their motor system has a difficult time getting those words out of their mouth.
Apraxia is different than a typical speech delay. With a typical speech delay a child will progress through the process of learning to speak in the normal, expected pattern as they learn to talk. They may be developmentally delayed, but their cognition and receptive and expressive language skills will progress together in the expected sequence.
A child with Apraxia of speech does not follow the typical pattern of language and speech development. A child with Apraxia may have developmentally normal cognition and receptive language, but very delayed expressive language skills. There is a huge difference in what they understand and what they communicate.
This holds true for my son. My Little Man understands what we say to him (receptive language) far more than what he says to us (expressive language). His speech pattern is also extremely atypical. He has a difficult time producing simple words like Dada–a sound that typically comes early as a toddler is babbling and beginning to speak. Although these simple words are a challenge for him, Little Man has spit out big words like grandma, elephant, and vacuum cleaner out of the blue. The thoughts and words are in his head, but it takes so much effort for him to say them aloud. When he does say a very large word, we usually only hear it once or twice, and then it’s gone and he can’t produce it again on demand.
Apraxia is challenging. I have heard many parents express that it seems like their child’s mouth is taped shut–and that is exactly how it feels. I know my son has thoughts and opinions that he wants us to know about; he simply cannot get those words out of his mouth for us to hear. I can see the expressions on his face and the movement of his mouth and I know that he has something to say–it just will not come out.
Apraxia is usually diagnosed by a speech therapist, and hopefully by one that has spent a lot of time with the child in order to get to know them and rule out any other language/speech issues first. Apraxia is typically diagnosed after the third birthday for this reason. Little Man has been working with his amazing speech therapist since he was around a year old, first for feeding therapy and then for speech therapy. She was able to identify very early on that his delays were probably related to Apraxia of speech, and although she began early intervention for Apraxia, he still was not diagnosed officially until after his third birthday.
Apraxia has a prognosis that depends on the child and the severity. Some children are able to develop normal or near normal speech, while others struggle lifelong. Therapy and consistent work are keys to progress. While verbal speech sounds are the goal of therapy, a good therapist will also help to find other forms of communication in the meantime. My son has benefited from the use of sign language, albeit slow to learn new signs due to the motor planning delay. We have also worked with picture exchange cards (PEC), picture boards, and apps on a tablet for enhanced communication opportunities. These alternative forms of communication can help reduce frustration and promote relationship.
With all of the special needs we have faced in our little family, Apraxia is by far the largest giant in our path to progress so far. Without a doubt it has been, and continues to be challenging every single day. However, I know that my son is an overcomer and that my God is in control. Any challenge my Little man rises to is a testament to a God who loves him and carries him through.
For more information about Childhood Apraxia of Speech visit Apraxia Kids at the Childhood Apraxia of Speech Association of North America (CASANA) website. You can also find more information at American Speech-Language-Hearing Association.
Every child deserves a voice.