Because Every Child Deserves a Voice

Today, May 14, is Apraxia Awareness Day!

This is my daughter, Addie! This is the face of Apraxia. But it does not, and we will not let it, define her.

Almost 2 years ago, we received the diagnoses of Apraxia. She had just turned 5. She had such a limited vocabulary that most of the time we had no idea what she wanted or needed. Why she was crying or what she did at school that day. Apraxia is a severe delay in speech (or in Addie's case, motor skills as well). Children with Apraxia know what they want to say but really struggle with getting their words out! The brain sends signals to the muscles to do what they should do but along the way, the signal gets scrambled, and the muscles don't move the way they are suppose to. 

This past year, in November, she was also diagnosed with absent seizures. Her seizures happen in the part of the brain that, as the doctor explained to us, "makes us different from a monkey". Its the part of the brain that controls her understanding, her language, her motor skills, etc. We got her on seizure medicine in December and between that and her wonderful therapist and teachers she has made amazing progress the last few months. Her vocabulary is expanding and her words are starting to get clearer.

Addie is the most loving, tender hearted, kind, sweet, amazing kid. Everyone that knows her, falls in in love with her sweet smile and kind heart. As her mommy, I've had so many fears for her. I worried that her speech delay would hold her back from making friends, that kids would make fun of her, that she would never find her voice, that I would never hear the words "I love you", and so many more. In the last year, God has really been dealing with my heart and the way I think of things. Instead of fears and worries, I pray healing over her everyday. This kiddo has been through so much and she comes out shining like a star on the other side. And all those fears that held me captive for so long, God had little ways to show me along the way that I shouldn't have worried, He has His hands on her! He has shown us that this is something that will not define her but something that one day she will say "This is where I was. This is the road I traveled. And this is where God has brought me to today." I look at her and see someone that will do great things one day. She has already touched so many lives in the last 7 years! 

Apraxia can not only affect speech, but it can affect motor skills as well, this is known as Universal Apraxia. We do not have an "official" diagnosis of it but we've had many therapist and doctors say that hers is Universal. Things like moving a mouse on a computer, pedaling a bicycle or doing the motions to a song are actually extremely hard for her. She has never been able to keep up with motions to a song (its always been to hard, to quick, so she would just watch other kids do it) but this past Easter, during a performance at church, SHE DID! She wasn't even suppose to be doing the sign language part, since we didn't think she could but she learned by watching during practice and surprised everyone when they realized she could do it too. So the director over the performance decided that she was going to put her up there and let her go! What a surprise for mommy and daddy! I had so many tears, I had to keep myself from ugly crying. God, prayers, hard work, and amazing therapist and teachers have brought her such a long way! I am so proud of her and so blessed that she calls me mommy! 

(She's the one in the middle!)
"There is POWER in the name of JESUS, to break every chain!!"

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. - See more at: http://www.asha.org/public/speech/disorders/childhoodapraxia/#what_is

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. - See more at: http://www.asha.org/public/speech/disorders/childhoodapraxia/#what_is

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. - See more at: http://www.asha.org/public/speech/disorders/childhoodapraxia/#what_is