Speakin’ for Scarlett

Scarlett starting receiving speech therapy at age 1 1/2 because of “delays” and not meeting age appropriate speech and language milestones. After about a year of therapy, and not much progress, her pediatrician guided us on our next step… a referral to see a developmental specialist. Finally, on April 4, 2018, Scarlett received a diagnosis I had never even heard of before – childhood apraxia of speech (CAS).

Not only was I unfamiliar with CAS, I didn’t know what to do about it. The first thing I remember reading were the words “neurological disorder”. After that, I don’t remember much else. I cried the whole way home from our appointment. I cried because I felt so sad for my baby girl. I cried because of the “unknown” and what this would mean for my baby’s future. I cried wondering if this “disability” would be with her for the rest of her life and how it would affect her. That evening I finally sat down, made some phone calls, and started researching.

We now know that apraxia of speech is a rare neurological disorder in which a child has trouble making accurate movements of the mouth when speaking. The muscles of the mouth are not weak, but rather they cannot function “normally” because the brain has difficulty directing and coordinating the movements. Apraxia does not mean that a child does not know what he or she wants to say; in fact, that is quite the opposite. The child KNOWS what they want to say, but they just need HELP saying it. Sometimes, they even work very hard to say just ONE word!

Through intensive therapy and repetition, the hope is that these children will be able to “retrain” their brain into sending the correct “signals” so that words can be formed and said with more clarity. Apraxia of speech has nothing to do with intelligence. In fact, Scarlett’s receptive and non-verbal skills are AMAZING!

As a mom, it breaks my heart to see my child struggle, especially since I can’t just “fix” what is wrong. What makes it even harder to accept is the reason why. Why does Scarlett have this disorder? She never had a stroke, she never had an infection in her brain or experienced a traumatic brain injury, and she was never diagnosed with another disability… in Scarlett’s case, the cause will remain unknown. So for now, Scarlett and I make every effort we can to ensure that we get her 4 days of intensive therapy in every week (2 at home and 2 outpatient) because years of this therapy along with repetition is what is going to help my baby girl soar!

Not only does supporting Scarlett take a ton of patience, commitment, and time; it also requires a lot of ADVOCATING! We participated in the 2019 Walk for Apraxia to raise awareness and funds not only for my baby girl, but all of the children whose sweet voices are yet to be heard. Like many, Scarlett works so incredibly hard every single day and she deserves a day of recognition! The children are the true champions!

Scarlett starting receiving speech therapy at age 1 1/2 because of “delays” and not meeting age appropriate speech and language milestones. After about a year of therapy, and not much progress, her pediatrician guided us on our next step… a referral to see a developmental specialist. Finally, on April 4, 2018, Scarlett received a diagnosis I had never even heard of before – childhood apraxia of speech (CAS).

Not only was I unfamiliar with CAS, I didn’t know what to do about it. The first thing I remember reading were the words “neurological disorder”. After that, I don’t remember much else. I cried the whole way home from our appointment. I cried because I felt so sad for my baby girl. I cried because of the “unknown” and what this would mean for my baby’s future. I cried wondering if this “disability” would be with her for the rest of her life and how it would affect her. That evening I finally sat down, made some phone calls, and started researching.

We now know that apraxia of speech is a rare neurological disorder in which a child has trouble making accurate movements of the mouth when speaking. The muscles of the mouth are not weak, but rather they cannot function “normally” because the brain has difficulty directing and coordinating the movements. Apraxia does not mean that a child does not know what he or she wants to say; in fact, that is quite the opposite. The child KNOWS what they want to say, but they just need HELP saying it. Sometimes, they even work very hard to say just ONE word!

Through intensive therapy and repetition, the hope is that these children will be able to “retrain” their brain into sending the correct “signals” so that words can be formed and said with more clarity. Apraxia of speech has nothing to do with intelligence. In fact, Scarlett’s receptive and non-verbal skills are AMAZING!

As a mom, it breaks my heart to see my child struggle, especially since I can’t just “fix” what is wrong. What makes it even harder to accept is the reason why. Why does Scarlett have this disorder? She never had a stroke, she never had an infection in her brain or experienced a traumatic brain injury, and she was never diagnosed with another disability… in Scarlett’s case, the cause will remain unknown. So for now, Scarlett and I make every effort we can to ensure that we get her 4 days of intensive therapy in every week (2 at home and 2 outpatient) because years of this therapy along with repetition is what is going to help my baby girl soar!

Not only does supporting Scarlett take a ton of patience, commitment, and time; it also requires a lot of ADVOCATING! We participated in the 2019 Walk for Apraxia to raise awareness and funds not only for my baby girl, but all of the children whose sweet voices are yet to be heard. Like many, Scarlett works so incredibly hard every single day and she deserves a day of recognition! The children are the true champions!



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