People often ask me why I continue to volunteer for Apraxia Kids years after the successful rehabilitation of my son’s speech. This is why.
Each milestone that my children achieved was met with eager anticipation and excitement. However, the milestone I most awaited was my children’s first words. The sound of my children using their voices to share their thoughts was nothing more than miraculous. The joy, delight, and elation of hearing “mama”, “dada”, “I love you” and “no” for the first time is something many parents celebrate. I remember the first time my daughter told me “no”, my heart secretively leapt with glee while my head thought “I could be in trouble now with this new word”.
However, when my son came along, I worried. He was making progress on all his other milestones: crawling, walking, fine motor, but he had limited vocalizations. He was a happy baby. He had a great sense of humor. He laughed at the silly antics of his older sister. As he grew, it was clear that he understood language. His hearing was clearly not affected. However, he had limited speech attempts.
My son was 2 ½ and his vocabulary consisted of “mama”, and a variety of inconsistent sound approximations. For example, “car” could be represented by the inconsistent “ka”/”ga” approximation sounding like “ka” one time or “ga” at another time. “Mama” was his only consistent multi-syllabic word. In addition, he used “da” for “door” (meaning he wanted to go somewhere) but also for “down” or “Dad”. You can understand our confusion and his frustration, not knowing if he wanted Dad, down, or to leave and go somewhere.
He was evaluated and started speech services at 2 years 10 months. (Yes, even back then there was a waiting period to get a spot on an SLP caseload!) We started weekly sessions with our SLP but he made little progress. He began making up his own sign language. Our therapist told us that we should discourage this as he would learn to rely on it and lose motivation to learn speech. We struggled through the next year. His progress was painfully slow.
We would receive a diagnosis after my son was 3 ½ years of age, “Developmental Verbal Dyspraxia”. (FYI: this is very outdated terminology for CAS. CAS is not at developmental disorder that your child will simply outgrow it.) I remember feeling like “a deer in the headlights”. There were no specific answers to my questions, “would he be able to learn to talk”, “attend a regular school”, “live independently”? The answer was “we will have to wait and see”. I wanted to grab my son and run home as quickly as possible. I felt so alone and afraid. (Yes, this was before the internet or social media existed).
As a physician, I made it a priority to go to my local medical library and read about Developmental Verbal Dyspraxia only to discover that many were using different and confusing terminology: “Development Verbal Dyspraxia”, “Development Apraxia of Speech”, “Verbal Dyspraxia”, etc. (To clarify, there are still SLPs who want to differentiate between these terms. However, the accepted terminology by ASHA is Childhood Apraxia of Speech or CAS. My advice, if your SLP is using outdated terminology, they may have outdated treatment approaches as well.) The available information was highly technical and not easy to read.
Memory is marked by meaningful events in the lives of our children. It was around this time, that I began to realize that we needed to do something different. This memory involves a punishment of my son. Like any normally developing brother, my son made it a priority to annoy his older sister. My son owned a fishing toy in which one could catch toy steel fish with a fishing pole containing a magnetic lure. My oldest daughter and my son were “fishing” when I witnessed my son striking his sister over the head with the pole. Well, that ended the game. As punishment, I put the fishing pole on the mantel of basement fireplace. My son would not be allowed to play with his toy until “tomorrow”. Well, “tomorrow” came and my son wanted his fishing pole back. He tried to ask for the pole back by making fish lips and saying “poo”. I did not understand. Did he have to use the bathroom in some urgent way? He then added a gesture pointing to the basement. Had he used the bathroom in the basement and there was trouble in the bowl? I did not understand. He became more desperate and added a swimming breaststroke gesture to the mix. Did he want to take a bath in the basement tub? He broke into tears, grabbed my hand and drug me to the basement and pointed to the fishing pole on top of the mantel. He wanted his fishing pole back! I had failed to understand my son. I not only experienced his frustration but became increasingly more insecure about his future. As his frustrations to communicate were building. I knew in my heart that we needed to change something because what we were doing was not having a significant impact.
The internet was new. I had many attempts to obtain information from the internet. I had typed the terms “dyspraxia” and “apraxia” into my Lycos search engine (before Google existed) and there was not a single hit! Then came Halloween night. While making final alterations to my kid’s costumes, I logged on and typed “apraxia” and to my amazement I found the Listserv Apraxia-Kids and a tiny website “Apraxia Kids”. Both were started by Sharon Gretz. I printed off the entire website The website was only a few pages back then. (Warning do not try this now, as the website has grown to over 800 pages!) I immediately joined the Listserv. Looking back, this event would change the path in our journey through apraxia of speech. We changed therapy strategies and therapists, school districts, and learned advocacy tools which have, in my opinion, have made all the difference in the life of my son.
The earliest form of social media (Apraxia-Kids Listserv), the Apraxia Kids website, and a local parent group all started by Sharon Gretz became my lifeline for information. We stopped wasting our time with pointless oral motor exercises (which I never believed help, my son hated, and squandered time in our already busy day). I learned how to advocate for more therapy sessions with insurance. We added SEE (Sign Exact English) to our toolkit, reducing our son’s frustration by adding a communication devise, while he transitioned to a verbal communicator. The isolation was broken. I could share my fears and hopes with a group that “got it”. Thank you to Andrew’s mom from Scotland who helped me through the potty-training nightmare. (Yes, you were right, he would not be wearing a diaper to college!) This group held my hand through IEPs. They celebrated with our successes: saying his name, the completion of the Wilson Language Reading program, acquiring an “R” sound, and so many other accomplishments. I truly believe that Halloween night would change the course for my son and for me as a parent.
I continue to volunteer and support the efforts of Apraxia Kids because of the precious gift we received, a voice for my son, one of his very own. I can never repay the debt. However, my hope is that Apraxia Kids will be there in the future to support my grandchildren or a future generation. A special thank you from me to Sharon Gretz (whose vision ignited the Apraxia Kids movement, network, and organization), the members of that early parent group, members of social media(shout out to Kara who carries the torch forward), walk coordinators and donors to Apraxia Kids, SLPs who supported us and others along the way (special thank you to Joyce O’Keefe and David Hammer), Board and committee members of Apraxia Kids, Tim Burns for talking me off the ledge many times, the staff and leadership at Apraxia Kids (nod to Angela Grimm, our Executive Director and our staff who translate mission into reality), the Professional Advisory Council (whose input continues to propel our children as they reach for their potentials), and most importantly…to my son. You made me a better person. Thank you.