Apraxia: When the Words Just Won’t Come

Apraxia

Parenting is always a leap of faith. There is no license or certification demanded; we all have to learn as we go. With love, hope and plenty of “asked for” or perhaps “unasked for” advice, we make our way day by day.

My second child came along when my oldest was five. We named him Shea; a good strong Gallic name meaning “dignified” or “hawk like”. He was an easy baby; our blue eyed, blond-haired boy.

He did his basic babbling, but, didn’t proceed from there. Grunting, squealing and pointing; he certainly was able to make his needs known but he wasn’t even close to talking. My oldest had been one of those kids who talked in complete sentences at the two-year check up. So, I wasn’t really surprised when our Pediatrician flagged the lack of language at the 18 month check up.

Honestly, I didn’t think there was really anything wrong with him. So, he was a late talker, right? We have all heard the stories and anecdotes about someone’s brother’s, cousin’s, sister’s kid who didn’t speak until 4, then launched into full sentences and hasn’t shut up since. “Even Albert Einstein didn’t speak until he was 5”, I heard over and over again from well meaning people.

Even though some of the older, more experienced doctors in the office kept advising us to “not worry” until he was 3, my doctor encouraged me to contact the local Child Find program. What was the harm in looking into early intervention? And today I am thankful we got started when we did.

For those who may not be familiar with Child Find, it is a component of the Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children with disabilities, aged birth to 21, who are in need of early intervention or special education services.

Shea was enrolled in the Developmental Preschool at our local elementary school. Networking with the teachers, specialists and other parents was the support I had been missing. All the pain, worry, and insecurities were still there, but, at least we weren’t dealing with it alone anymore.

We were encouraged to pursue signing (ASL) with our son and that helped a lot. It did relieve much of the frustration and it was a blessing to finally have a way to communicate with him. Much of my excitement and enthusiasm at that time was over those strides and I would encourage any parent to try that path.

When I first heard the diagnosis of Apraxia, I had no idea what it was and began researching.

“Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.”

These early days were a very sad time for me. It was beginning to dawn on me that our child had special needs, but, I had no frame of reference of what that would mean for the long run. Would he ever speak? Would we be able to mainstream him in school? Would he ever have friends? How do we help him?

This is where the parental “leap of faith” comes in. Parents never really know how or what the right thing to do is, yet we have to do it anyway. We follow our hearts and instincts and hope for the best. And, we search for kind, thoughtful people to help us on our journey.

Referred by a friend when Shea turned 3, we started doing private speech therapy every week. Gently, with play and humor, she connected with my son. Through her, I was able to develop some coping skills, some strategies on how to navigate this new world, and some defenses against the unknown.

I asked her once if Shea would ever grow out of this or maybe just “catch up”. She said, “Not without help.” That is when it finally hit me. This is a journey that we are all on whether we want to be or not.

Repetition was the key. They worked on sounds over and over again. Her strategy was to work at developing new pathways in his brain for language to emerge. She described it to me like a trail; the first time it is walked it is rough and hard to see but each additional time it is used, it becomes more pronounced, easier, more permanent.

One emotionally raw day, I listed all the things we did not know about Shea and his future. She compassionately listened to me and said, “Yes, there is a lot we don’t know but you do know he is happy.” True. He was happy and well taken care of and loved. I saw the wisdom in dwelling on that instead.

There is no doctor that is going to “cure” my son. There is no magic pill. If there is a cure, it is the journey itself. And, the only people who have the capability to help him are us, his family.

We are still on the journey, but, at five, Shea does speak. He works on articulation very hard and probably will for quite some time. But, he is happy and smart and is learning to read. He is funny, has friends and loves Batman.

There is room in the world for Shea…..room in the world for all of us.

Apraxia and Dyspraxia are often used in the same way but are quite different. Apraxia is a neurological disconnect in the language center of the brain. Many children with Apraxia can have other motor delays or sensory integration issues but that are considered separate issues.
The term Apraxia was first used in reference to stroke patients when they lost their ability to speak and would need to re-learn. Then they started diagnosing children with the disorder and called it Childhood Apraxia of Speech. A great resource https://www.apraxia-kids.org/

About Author: Shelley Dillon is a mother of 2 living in the Pacific NW. Her 2^nd child has a severe speech disorder or Apraxia. The journey to help him is a long one and unfurls day by day. She knows the feeling of isolation as a parent of a child with special needs is the loneliest feeling in the world. Therefore she reaches out and encourages other to connect with others as well.

She blogs her personal journey at coaxingwordsfromshea.blogspot.com/.

She also researches and writes about children with special needs issues at Examiner.com.

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Apraxia: When the Words Just Won’t Come

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