As part of the 2023 Cleveland Walk for Apraxia, team Struttin’ for Siena was recognized as a Grand Champions Club member for fundraising over $5000 for Apraxia Kids.  Funds raised through the Walk for Apraxia are crucial to supporting the development and growth of our programs, which are often offered for free or low cost.  Not only that, the Walk for Apraxia is also our leading initiative to raise awareness and acknowledge individuals with apraxia of speech while having fun!

In an interview, Team Captain, Abbie Dillon, tells the story about her daughter, Siena.  Abbie reflects on how she suspected Siena had a speech delay at an early age, and the timeline of events that happened until Siena received a diagnosis of childhood apraxia of speech (CAS).  Abbie describes the challenges they had to overcome and the concerns that she and her spouse felt upon diagnosis.

Many points that Abbie mentioned in the timeline of their lives from before diagnosis to now are very relatable to the story of other children with CAS.  Unfortunately, though, it is still a condition that many people struggle to understand or never hear about.  Therefore, raising awareness is crucial so children can receive the best treatment and support possible.  Abbie explains why raising awareness is so important to her and to remind people to be mindful when approaching others.

Abbie further explained – “It’s important to me that people know that when Siena was first diagnosed and she wouldn’t answer people, especially those outside of our home, I didn’t want to tell them she was nonverbal because she’s not.  People, in general, when they hear nonverbal, they sometimes associate it with a level of intellectual disability and that’s not always the case, so I didn’t want to say that she was nonverbal. Siena is very smart, and she has no developmental delays. Just the words in her head come out sounding like gibberish. There’s no other way to explain it.  I just want people to know that that she’s trying her hardest – just give her a minute and she’ll get there.”

In order to help raise awareness, Abbie was the 2023 Cleveland Walk for Apraxia volunteer Walk Coordinator and walk team captain for Struttin’ for Siena.  She explains who walked with her at the Walk for Apraxia and how it made her Apraxia Star, Siena, feel special.

Her team also fundraised over $5,000 to help sustain the programs, resources, and mission of Apraxia Kids.  That’s a HUGE accomplishment!  When asked to describe the methods she used to meet that goal, she explained how Siena encouraged her – “I just talk to people. I like to talk to people. I have no problems going up and sharing this information with people.  My biggest piece of advice for others who are fundraising – get comfortable with the uncomfortable. It’s always an awkward conversation to ask people for money, especially if it’s somebody you’re close with, but I remember Siena and kids like her – they’re uncomfortable every day. Just imagine knowing what you want to say, going up to a line and somebody asks you a question and you say the words and then they can’t understand you. That is incredibly uncomfortable.  That’s everyday life for Siena and kids like her.  Therefore, I can be uncomfortable for a 15-minute conversation to ask somebody for support. It’s the least that I can do.”

That is great advice for anyone who is nervous about joining the Walk for Apraxia or raising funds.  It is not always easy to ask, but remember how speaking is never easy for a child with CAS.  Abbie is truly an inspiration and happy to share her child’s story in hopes to help others; including parts of their story about how this diagnosis can sometimes be hard.  She reminds us that there are many days it feels like you are taking one step forward only to then take three steps back.

The emotional roller coaster from this diagnosis does not only affect her child, but also Abbie as a caregiver.  She admits it can leave parents or guardians questioning themselves, “Why am I doing this? Why am I putting my child through hours of therapy every week?  Other children get to take dance lessons or play baseball, but my child’s extracurriculars are sessions of speech therapy.”

Luckily, there are so many resources readily available for families and professions who are supporting a child with childhood apraxia of speech.

One last note from Abbie – “I think another thing people often forget about disabilities in general is that people are normal people, and these kids are normal kids. Siena likes to jump on the bed, annoy her sister, and ride her bike, but just struggles with speech. It’s just one part of who she is and so being able to talk about it, sometimes really laugh about the challenges that we have instead of trying to struggle and cry through them, it’s humanizing.”

To view the entire video interview with Abbie Dillon, please click here.

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