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Dawn Bechtold: Apraxia of Speech is a rare disorder, but parents of an affected child can find support

Almost any parent will tell you that being a parent is the most difficult, yet most rewarding job that you will ever have. There is no love comparable to the unconditional love that you have for your child. Being the parent to a child with Apraxia of Speech is no different.

Apraxia of Speech is a disorder that you’ve likely never heard of, and that’s okay. I had never heard of it until my daughter was diagnosed with it. The reason that you’ve probably never heard of it is because it is considered a rare disorder, with only 1 or 2 children diagnosed out of every 1,000.

Apraxia of Speech is a motor planning speech disorder. With Apraxia of Speech, the child knows what they want to say, but unlike children who do not have this speech disorder, their brain does not innately tell their mouth the precise movements required to say it. They must learn these movements via frequent and intensive speech therapy. A child with Apraxia of Speech has to say a word or sound one thousand times before it becomes automatic for them. It is important to note, however, that Apraxia of Speech has no effect whatsoever on a child’s intelligence or understanding. While there can be various causes, most often it is idiopathic (the cause is unknown).

It is a frightening experience when your child receives any type of diagnosis, but especially one that you’re unfamiliar with. This is because, as a parent, the last thing that you ever want to feel is helpless. It is easy to succumb to the fear of the unknown. I can’t speak for other parents, but the guilt that I felt when we received my daughter’s diagnosis was staggering. I went through every minute detail in my head. Did something I do cause this? Is there something that I could have done differently?

No parent wants their child to struggle. In my mind, it was my job to protect her from these struggles. I know now that it was never my fault, it was never anything that I did, but as a mother I feel like self-blame is in our nature. It took me time to realize that.

The thing is, as the years have passed in this journey with Apraxia, I’ve begun to learn that, while I never would’ve wished for it, it isn’t something to be feared. Having Apraxia has taught my daughter resilience. It has taught her perseverance. It has taught her that anything in life worth having is worth working for. I am proud beyond measure.

As a mother, it has forced me to face my fears. All my life I have avoided conflict, but as a mother fighting for my child each and every day I’ve learned that I no longer have that luxury. It is my job to be on the front lines for my daughter each and every day. To advocate for her. To show her what it means to be brave. It has caused me to step outside of my comfort zone, and that’s okay, because my daughter is infinitely more important than my comfort zone.

The reason you’re reading this, the reason that I fought so hard to get this out there, is because part of advocating for my daughter includes spreading awareness. Each year I explain to my child’s teacher(s) what Apraxia is and how it might affect her in the classroom. I let them know different supports she may need due to her Apraxia (speech affects more areas of learning than you might expect). My daughter has been lucky enough to be blessed with phenomenal speech therapists and teachers. Teachers and speech therapists who go above and beyond to make sure that my daughter gets what she needs inside and outside of the classroom. To make sure that she is successful. They say that it takes a village. I owe a great debt of gratitude to our village.

It is my hope that by spreading awareness, our journey may get a little easier with each passing year. That, maybe, it makes the journey easier for the next child. That the next time a parent receives an Apraxia diagnosis for their child, they aren’t overwhelmed by the unknown, because they know that everything will be okay. That they are not alone in this journey.

Dawn Bechtold

I will continue to advocate for my daughter every day, until the day that she is able to advocate for herself.

If you are concerned about your child’s speech, please don’t wait. The sooner they start receiving services, the better it will be for them.

• If your child is under 3 years old, please reach out to the First Steps program in your area so that you can begin the referral process. This does NOT require a referral from a doctor.

• If your child is between the ages of 3 and 5, please reach out to your local preschool or Head Start program.

For more information about Apraxia please feel free to go to https://www.apraxia-kids.org/.

Also feel free to check out the Apraxia Kids Official Support Group here and Fighting for my Voice: My Life with Verbal Apraxia.

Lastly, May 14th is Apraxia Awareness Day, and in support, we are requesting that everyone wear blue that day in honor of Apraxia Awareness.

Please share your pictures on social media to help raise awareness in the community.

Dawn Bechtold lives in Northern Kentucky with her husband, daughter and two dogs and is a family advocate at Head Start.

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