Childhood Apraxia of Speech Awareness Day

Today is the First Annual Childhood Apraxia of Speech Awareness Day. This disorder is something that we are just now learning about. My Addie is almost 6 and was not diagnosed until she was over 5 years old. We are getting a late start but we are determined to get her caught up.


Our Addie was such a quiet baby. She very rarely cried as a newborn and I was amazed. I must be doing something right if I have a newborn that doesn't cry! As she got older, she didn't babble much.  She said mama first and then 'dada' and maybe one or two more words, but then it all just went away, the only word that stayed was 'dada'. We thought it was due to the number of ear infections she had and the need for tubes. But even after we had tubes placed, we still only heard 'dada', nothing else. She had an ABR Hearing Test performed and had mild hearing loss, so we got hearing aids. The speech started to come, but it was still slow, still nothing like I knew most kids do. At 3 1/2 years old I finally heard the word 'mama' again. Oh, my heart. How I longed to hear that word. At 4, I finally heard "love you" (before she could say it she would always hug us and pat our backs 3 times so we knew she loved us) but to hear those words ::sigh::. Oh, how I will never take those words for granted. I tell her everyday, 100x a day, just to hear her say it back. At 5, we found out that God gave us a miracle and healed her hearing, she can hear near perfect now. So. Where did that leave us? We now have no reason as to why she such limited speech. Her wonderful speech therapist decided to do some more testing and that's when we found out, Apraxia of Speech. So here we are, not even a year on this journey, still not knowing much about the disorder but learning as we go.


Today. I just want to raise awareness of a disorder that is trying to steal my child's voice. I want people to be aware that just because a child is in a store and might squeal to get a point across, its not because the child is being bad or defiant, its because it is the only way that child knows how to communicate to get a point across. That just because they don't verbalize well, they can still understand you and communicate with you, it's just in a different way.


I've been that mom. The mom that watches her child sit and play by herself, instead of playing with all the other kids at a birthday party.
I've been the mom that has gone through a store with a crying child because they are frustrated and I just have no idea what is wrong because she can't verbalize.
I've been the mom that has sat for hours in therapy offices waiting.
I've been the mom that has questioned if I'm doing enough or if I could have done more.
I've been the mom that has fought for the right placement for her child in school.
I've been the mom that has had her child put to sleep for an MRI just to make sure there isn't a tumor because her daughter has eye and ear and speech issues.
I've been the mom that has got her child out of school and asked what she did that day and not get an answer because she can't tell me. But I get a hug and a kiss and a "miss you".
I've been the mom that has cried in doctors office, in the shower, and at alters praying for my child.


But.


I'm also her mommy.
I'm her biggest supporter, her biggest fan.
I'm the person that has pushed for more testing to make sure we haven't missed anything.
I'm the person that knows what the tiniest of looks mean because I've learned them all. 
I'm the person that celebrates the tiniest of sound or the newest word.
I'm the person that understands her speech better then anyone eles.
I'm the person that she reaches for before anyone else.


So. We push through. We make sure that we don't let this define her. We work with her. We celebrate the smallest of improvement. We celebrate the perfect child that she is and let her know that we HEAR her and we KNOW her even if she can't express in words right now everything she wants to.


So today. Take a look at this website: http://www.apraxia-kids.org Apraxia is a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Maybe you know someone that is going through something that sounds like this and they want answers as to what's happening to their child. My Addie was 5(!) before we figured it out. Early intervention can help. Getting the right therapy can help! Thanks for taking the time to read and please feel free to share this and get the word out about this disorder that's trying to steal our children's voice!


Here is one of my all time favorite pictures of my Addie.  Here she is, sitting in the vast ocean, and all I can think every time I look at this picture is, "what are you thinking love, what are you thinking". We work hard to get to a point where she can tell us with words everything she is thinking.