May 2022

My feelings on our family’s Apraxia journey may be the most loaded question I’ve ever been asked, so get the popcorn ready.

In 2013, my husband and I were blessed with a wide-eyed beauty we named Hadley Grace. We were typical anxious rookie parents. H started at Book Babies in our Northwest Denver neighborhood library at 2 weeks old, music class at Altitunes at 1 month old, and swim lessons at the Y by 6 months old.

The plight of a first child is that the comparison bar is unattainable. I didn’t know what comments to ignore–they all stung. It wasn’t that she was breastfed, or that I spoiled her, or that we didn’t do x, y or z enough; by 2 she had very few recognizable words to an unfamiliar listener. Her paternal grandfather was a late-talker and now at 74 exhibits word-finding and dyslexic traits, so even the people in the world that loved Hadley most greeted us with criticisms and ill-informed advice, including the “Einstein didn’t talk until 4,” or “I didn’t speak forever, barely graduated high school.” By Hadley’s 18 month check up, I was confident enough to insist on an evaluation from an expert.

Little known fact: services for early intervention are free and often in-home and on a friendly schedule from 0-3. Our first SLP, Rachel, came to our house Mondays at 9 am from Hadley’s second to third birthday. Rachel was confident Hadley’s communication skills nearing her third birthday were indicative of a language blossom just around the corner and thought maybe she wouldn’t even qualify for the next step of services. At that point in Rachel’s early intervention tenure, she had only seen 2 kids that turned out to have CAS and their comorbidities were noticeable by this stage. In Colorado, at 3 years old if you still qualify for services, you next attend a preschool program in a local elementary school. I was forced to send my preverbal 3 year old to our non-homeschool for 3 hours a day to better progress her development. It was terrifying. Would she have bathroom accidents? Would she be bullied? Would she cry all day because she couldn’t tell friends her name? However, something kind of beautiful happened that year. Her class was primarily filled with ESL students and the peers that spoke Mandarin or Hindi didn’t think of H as behind or insignificant; they just thought she spoke Hadley.

I often felt judged by her school SLP, like it was my fault that we weren’t doing flashcards enough so she wasn’t progressing significantly. Unfortunately that was my insecurity showing. A school SLP has to be so wise to so many disorders and was trying to eliminate certain ailments. Mrs. Judy, the school SLP, was also bound by so many legalities. One day, her school SLP handed me a print out on Apraxia. On the top was written the woman’s name and cell phone number that another student of hers saw for additional help. Mrs. Judy tastefully implied that summer speech for Hadley was imperative.

This put Ms. Deb in our life. Ms. Deb was a school SLP in an adjacent school district with specialties in deaf and hard of hearing as well as Apraxia. Hadley was a few months shy of 4 years old at the time and baby sister Tenny was 4 months old. Deb became a pseudo-grandma figure in our lives. She swooped into our house 3 afternoons a week with her knack to pull off my dead flower petals and her Mary Poppins bag of speech gear. It was Hadley’s fourth session with Deb and her comment of, “this girl doesn’t know she has a tongue, let alone its placement in her mouth,” that left me deflated. I asked “If this was your child what would you do?”

People bound by legalities often feel called to act when you make your situation personal to them. This is where she put me in touch with one of her client’s mothers; another school and private SLP who had started a blog as SLP Mommy of Apraxia. A $300 evaluation on a Saturday morning when my husband was traveling for work with a newborn in tow revealed Hadley had severe Childhood Apraxia of Speech. I felt alone and helpless. I tried to find books, research studies, Apraxia Kids webinars, anything that gave me direction and also set up proper expectations for the future. I never felt my questions were properly answered or that I was prepared. I left that phase knowing I just had to make the investment in proper and intense speech services and that was the best I could do. I had envisioned going to the Apraxia Conference but having three young kids made that near impossible so I had to find another way to be in the same room with these minds. The Walk for Apraxia used to reward the cities that raised over $30K with a parent seminar in their home city. I knew the woman running Denver aspired to hit that reward level and I volunteered to procure items for the silent auction. When I got the kids to bed, I would feverishly email and run all over town to do pick-ups. And we did it–twice! It was truly an honor to hear Dave Hammer speak before his retirement.

I also have signed my kids up for a few research studies. Duquesne University sent out Dr. Megan Overby to observe Hadley’s literacy skills at the start of kindergarten. The University of Melbourne professor, Angela Morgan, also skyped with both girls and we all submitted DNA spit vials to help with her genetic links to Apraxia study. During that time, I also reached out to a mom who invited me to my first Apraxia Walk. At the beginning of our neurodiverse journey, I often felt martyred or robbed of what, thanks to social media, seemed like my peers’ parental experience. As I volunteered more with Apraxia Kids functions, I realized the awesomeness of my kids’ diagnoses. I had a level of involvement and community way bigger than I could have ever expected. This world of kids, researchers, therapists, and parents filled my bucket and we were accomplishing real change.

We’ve continued the regime. At one point between all 3 kids, we had 13 services per week.  Hadley received speech and OT services at school, saw Deb at our home twice a week, Laura in her office once a week, and OT Mallory once a week. Prior to Mallory, an OT once said to me, “adding some swing sessions to this kid’s routine will have her speaking in no time,” and again, I felt inferior to handle my child. That was a low; if love and routine would “fix” my child, we wouldn’t be here. And that’s when things shifted. Nothing was wrong with my child; I had to teach the world to learn how to speak her language.

We had Apraxia heavy hitters in our life throughout child #2’s (Tennys) development. While Tenny was in utero, frequent conversations included the worst possible names we could use for a baby for big sister to approximate. Passing comments would be made that she was a different animal than big sister but by two she also qualified for early intervention speech with Rachel in our home. I should mention, Rachel is now a mom to a child of CAS. Tenny’s behavior and sensory concerns seemed paramount in her problems acquiring speech. Early-intervention also put an OT in our life. There was reflex integration, compression vests, brushing techniques. Tenny also had her adenoids and tonsils removed, as an ENT thought she had sleep apnea and the size of her adenoids and tonsils were creating attention and irritability problems. The same SLP that diagnosed Hadley at 3 years, 9 months with Apraxia, diagnosed Tenny the week of her third birthday.

The girls were joined by a brother in 2018, Ripken, with a terrible name for a kid with Apraxia to pronounce. With family history and an asymmetrical crawl, he began early-intervention services at 9 months. Despite our family’s leaving Colorado for Sooner State Oklahoma, the same SLP that diagnosed Hadley and Tenny, diagnosed Rip with CAS at a Denver Embassy Suites at 2 years, 10 months.  

We moved to Oklahoma the night the Thunder game was excused with the first COVID scare, so my kids didn’t get the head-starts on friendships that we hoped moving over spring break would allow. Rip’s early-intervention, which was set up months before we left Colorado, fell through the cracks. My emails and calls would go unanswered and I would get mail notices of service coordinators changing and they will reach out soon. That when I called Joy Hofmeister myself and two days later, Rip started seeing Kourtne 45 minutes weekly on Zoom, despite her living in the neighborhood catty-cornered to mine. Zoom speech with a toddler was difficult, but it taught us resilience and dedication and Rip still grew attached to his provider. 

At 3 years, 2 months Rip began private speech 2x a week and he gets 1x a week at the girl’s elementary school. 

When my husband told us we had to move our kids again, I was deflated. What my kids’ services looked like was my primary concern, but the Apraxia world is a small, mighty contender. I reached out to an active Apraxia mom in McAlester and she offered a few clinics as suggestions. Kent at Speech Pathway talked me through Oklahoma’s school systems and frequent IEP challenges here and we fell into a smooth transition despite the pandemic and Zoom.

The journey has highs. Tenny is halfway through her kindergarten year and is now within normal limits for speech and language and will graduate private services. Hadley is a social butterfly in the choir, a top girl scout cookie seller and soccer player. Rip is still working on CVs but with a repertoire of signs, gestures, words and AAC to communicate his basic needs.  

We still have our lows, even kids that are within normal limits still have Apraxia, so incorrect prosody can earn you some enemies in second grade. I used to have this FOMO or jealousy of my typically-developing friends’ kids, whose days were filled with pools, parks, soccer, and everything else. That has subsided and I would choose this path 99% of the time. My 3 year old is so proud when he “gets it.” I used to keep this wall up; vague answers, no personal insight. In a successful system, the personal and professional lines get blurred because we have to get a little messy and be very honest to work together to help these kids find their voice. I am 3 for 3 with kids with Apraxia and each one of them is so very different. The secret is to find your tribe. That may look different to every family: professionals that love your kids as much as you do (shout out Mrs. Amy at Speech Pathway) and family or friends in-person or online who have been there and can offer solutions. On hard days, I remember this is a marathon, not a sprint. It’s ok to take breaks, but I have to do everything in my capacity until my kids have the strength to advocate for themselves. The world chose you to be their parent; to nurture them and to gift the world their beautiful presence.

~Jessica T.