First National Apraxia Awareness Day – May 14, 2013

Today I interrupt the posts about cupcakes and cookies to share a very important post that is very personal and close to my heart.   Today is the first National Apraxia Awareness Day.   What’s apraxia?  Yeah, about a year ago, I had no idea either.  Fast forward to today, and I am extremely aware of what apraxia is.   Why?   Because apraxia of speech is a neurological disorder that our beautiful three year old daughter Grace is severely impacted by.

I have shared before what apraxia is as well as talking about The Childhood Apraxia Of Speech Association of America. In short, apraxia is a neurological disorder that affects motor planning, making speech hard for some kids and almost impossible for children such as Grace. She works every single day, in therapy and at home, to find her voice. It is an incredibly slow process.  While many three year olds spend their mornings at the park or having playdates, five days a week our girl is working hard with therapists (our amazing, incredible therapists!), trying to find her voice.   You can read an in depth interview I did over at HerScoop, discussing our journey through adoption and now apraxia.

Some statistics show that it takes some children with apraxia as many as 3,000 repetitions to master a single sound.  It is a huge mountain to climb, and some days it feels like an impossible journey.  So few people, even professionals, understand apraxia, which is why it is so important to raise awareness.

As I said, this is a very personal mission. There is nothing I want more in life than to know that someday this little girl with the great big personality will be able to express herself and find her voice. I never realized how much we take for granted our ability to communicate.   Our ability to… tell people what we want to eat, that we don’t feel good, that we are afraid of the dark, that we are cold, that we are thirsty, that we can’t find our favorite toy, to ask another child to play with us, to tell Santa what we want for Christmas, to tell Mom why we are sad, to tell Dad we made a new friend, to ask for help, anything and everything.  For now we do everything we can to tune in and figure out what she’s thinking.  We use a picture exchange system where she can give us photos of what she wants and in a few months she will hopefully receive an augmentative communication device to help “speak” for her.

Some children with apraxia are able to use sign language to communicate, while others like our daughter, struggle just as much with sign language as they do speech.   The brain formulates the thought and motor planning helps carry it out, either through speech or sign, and for Grace, sign language is every bit as hard, if not harder than speech is.   At age three, she speaks fewer than ten words, but she tries all day, every day, to communicate with us.  Her motivation (and stubbornness!) is huge, and hopefully will serve her well on this journey.

But Grace is so much more than apraxia…

A few photos from the recent Arizona Apraxia Walk, where we raised money for and awareness of Apraxia…






I thank you, from the bottom of my heart, for taking the time to read this post and learn about apraxia.  I thank you for now maybe understanding why one child may not say hello at the park, why another may not say thank you when handed Halloween candy, why one “talks funny” or why another carries an electronic “talker” that they use for speech.   I truly believe that awareness helps breed acceptance.  Tomorrow my older daughter will be telling her 3rd and 4th grade classmates about apraxia, and raising awareness at her school.   She knows her little sister has a long road ahead, she worries about her being an easy target for bullying, and is doing what she can to educate others in hopes of creating a more accepting environment for her one day.    That is one of the silver linings of this journey, the understanding, empathy and desire to help others that living such a life brings into your home.

I leave you with a video that does an incredible job of sharing the feelings that we have as parents when it comes to apraxia, and why it matters so much for us to do what we can to help.

Comments

  1. says

    Just wanted to say “Thank You” for taking the time to share your story and to explain Apraxia of Speech. I love the saying “you learn something new, everyday” and your post was a shining example of just that. I will add Grace, your family and her therapists to my prayer list. Looking forward to hearing more about her progress. -Julie G.

  2. Jackie Sutt says

    Prayers for you, your entire family, and most of all for Grace. I pray that someday you will be able to understand why some of us have had to say Quiet! When that happens I know you will find yourself shouting for joy!!!
    Love your posts/site. Thank you for all you do.
    Jackie

  3. Brandi says

    Thank you for sharing your story! My son, Logan, is five and was diagnosed with apraxia last year after struggling for two years to get answers. It’s amazing to see his self-confidence increase with each small gain in speech. Warms my heart! Best wishes to you, Grace, and the rest of your family!

  4. Maria in NJ says

    GOD bless the child…and you for your strength…some day she will find the words to tell you how much she loves you for all that you have done…Blessings…m

  5. says

    Such a beautiful post, Christi! Your sweet Grace is such a gorgeous little girl and one day, her voice, her words will match her inside and out. Sending you oodles of love and prayers. For God, NOTHING is impossible. Nothing. And I know He has such a wonderful plan in store for her. XO

  6. says

    Great post and adorable kiddo! I will definatly be sharing this on my blog this week because of all the great info in here!

  7. Sonia G Salinas says

    Thank you for this awsome site. I have a niece with a son with Apraxia. I was in the dark about this till now. I would appreciate any info you may have on the next walk or how we can have one of our own. I would love to get more involved in raising awareness and maybe even raising funds for this cause. I can only imagine the hardship it bares on families as far as financial as well as stress. Please adivse on any info i can use to get our own walk going.

  8. Stephanie says

    Thank you for writing this beautiful and informative post. You have just changed the world a little bit. Thank you for the inspiration.

  9. Alison says

    Thank you for writing this. My 5 year old son has apraxia and it is still such a struggle. He had no words at all until after he was 3. He’s come a long way, but unless you know him, you have no idea what he is trying to say. It breaks my heart when kids won’t play with him because they think he’s weird and he talks funny. I’ve also come across some very judgmental adults who could really use some education and compassion. It kills me to see the tantrums he throws out of frustration from not being understood. Thankfully, he’s in a special program now where he gets the speech and behavioral therapy he needs, but I am dreading the fall when he starts kindergarten in a regular class because I can’t see it going well. He will still get speech, but no other services because of budget cuts, which is awful.

  10. says

    Well I just wish I was there to tell her how beautiful she is, to smile into her eyes, maybe even gain the privilege of a hug. I think every child should be greeted this way, and I even stop people in the grocery store so I can tell their children how beautiful they are. Our children are adopted from Romania, and our 17-y-o daughter (adopted at 15 mos) has serious emotional/mental issues. So I ” get it.” Cyber {{{hug}}} to your sweet daughter. Mary

    • says

      Mary, what a sweet comment, thank you so much for sharing. It’s always nice when we can connect with others who get it and travel a similar path. Hugs.

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