Teresa Hoelle is a mom of an Apraxia Star, Elina! Through the connections she made with a board member she found Apraxia Kids and is now taking an active role in the Apraxia Kids community.

How did you first find Apraxia Kids?

I was first introduced to Apraxia Kids through a fellow caregiver and board trustee. Our daughters share the same genetic rare disease, DDX3X – which thanks to the work of Apraxia-Kids – has recently been identified to have a genetic link to Childhood Apraxia of Speech (CAS). During a DDX3X parent community meet-up in 2023, the fellow caregiver shared about the Apraxia Kids IEP Roadmap and how targeted therapies she’d learned of through the organization had been extremely benefical for their family. As my daughter had also recently been diagnosed with CAS, I was enthusiastic to meet another mother familiar with CAS and the challenges it presented and immediately found myself spending hours on the Apraxia Kids website. Little did I know then just how transformational the Apraxia Kids community of resources & expertise would become in our lives.

Can you tell me about your first National Conference experience?

While I had registered for the virtual conference in 2023, it was through the in-person interactions and sessions during the 2024 National Conference in Pittsburgh that our CAS journey improved. I finally understood the principles of motor planning. I observed presentations on DTTC, and I began understanding the links between the Science of Reading and speech production – something I’d been trying to figure out for a while.  After years of holding my breath and worrying if I would ever find a path forward, finally exhaled a bit while sitting alone in my hotel room. On my drive home, I became determined if I could only find the right therapist partner who could work with my daughter consistently, that she may one day be able to speak with her own voice. Before going to bed that evening, I made a to myself which still hangs next to my desk: the date 7-13-24 and the words “Our New Era for E With Speech”

I fully embrace all communication modalities, yet my daughter continued to let me know on her AAC Device that she wanted to learn to talk. Therefore, despite how hard it was to coordinate, I was committed to attending the July 2024 Conference in-person. At that time, my daughter could only produce 2-3 dozen words, all single word production, and while she understood the grapheme/phoneme relationships, she could only produce ~80% of phonemes, and she could not say a single letter name nor count 1-10. These expressive language challenges led many to disbelieve in her capabilities.

What are the chances of meeting another Elina! Can you talk about how it felt to meet a young adult with apraxia / making a connection at the National Conference?

Having a daughter named Elina, I truly could not believe my eyes as a video featuring Elina Csapo & her mother Krista sharing their Apraxia journey together was playing during the first few minutes of the July 2024 National Conference opening ceremony. I snapped a photo of the two of them & their names as it was being projected on the large screen in the front of the room, and immediately text it my sisters & husband, as my eyes welled with tears. Our daughter’s name, Elina, is rare – so to get to meet another Elina with the same rare speech disorder, who had just graduated high school and was preparing to attend college in the fall, was exactly the rare of light and hope I needed. I loved getting to know both of them throughout the course of the conference. When I learned that Elina is also an advocate – helping to encourage other Young Able Voices – my sense of gratitude that I had found the community I’d been seeking soared off the charts. Our 7-year-old Elina loves seeing photos of college-student Elina, and for me to read updates of her journey. Elina & Krista Csapo are both such inspirations for me – and I know so many others.

Can you tell me about your experience attending a Walk for Apraxia?

It’s because of the amazing research, resources, and the many people like Krista & Elina Csapo that I’ve met through to Apraxia Kids, that I also try to give back and share what I am learning with others who are on this similar journey.

We participated in our first Cincinnati Apraxia Kids fundraising Walk in October 2024. Our daughter absolutely loved being a STAR and getting her medal and trophy and now even says “I’m a star!” thanks to Apraxia Kids!  She got to hear a local 8-year-old girl share how she’d recently graduated from speech therapy. Meeting other local apraxia kids gave Elina the rocket fuel (just as on last year’s tee-shirt design!) to try harder and believe in herself. On the evening following our first Apraxia Kids walk, for the very first time she read aloud with me every single word in a 19-page 1^st grade decodable. My husband and I could not believe the difference we were witnessing!!

Any other connections you have made through Apraxia Kids or anything else you would like to share?

Prior to attending the conference, we had already benefited from some truly amazing speech therapists through Cincinnati Children’s hospital, and a very effective co-treat partnership at a horse therapy farm with an incredibly talented and creative OT, Jayne & SLP, Melissa (PROMPT) team. Yet, through Melissa’s guidance while we were both at the conference last summer, I knew I needed to significantly increase our private therapies. The very next day after I had committed on July 13, 2024 to begin a new era in speech for our girl, I feverishly began seeking a DTTC trained SLP who could work with our daughter at least 4x/week. My prayers and hopes were manifest when I shared my search efforts with our education advocate – who recommended I seek out Nikki Cannon, Totally Communicating – a very talented practitioner who had recently opened a private practice after practicing for nearly 2 decades at our local hospital. Our daughter’s first session was at the end of August 2024. The transformation my daughter is experiencing – across speech & language skills, social skills, confidence – and the connections we now can share and experience together as a family – has been the greatest gift I could imagine. It gives me so much joy to hear my daughter enthusiastically say Nikki’s name – who we are fortunate to see 4x/week! We are still early in our journey, and yet I now have so much hope for my daughter’s future thanks to Nikki & Apraxia Kids!

I am also so incredibly thankful to now know Nakeeshia Rosser, the Cincinnati Apraxia Kids Walk Coordinator for 5 years. She started the Cincinnati Apraxia Kids walk. While a fundraiser, it also helps build local connections and community!  Nakeeshia’s daughter, who is just a few years older than ours, shared her testimony at last fall’s walk and it gave my daughter so much hope. Nakeeshia is incredible dedicated and hardworking as a mother of 3, an education advocate and professional, and I am fortunate to serve on her committee for the 2025 Cincinnati Apraxia Kids Walk this year.! Our walk will be held on Sunday, October 5 at Tom Jones Commons in Eden Park. Register and/or donate to support Team Elina’s Walk Group today!