May 14th: National Childhood Apraxia Day

"Don't worry, she'll wake up one day and just starting talking." 

Here is our daughter who is SO excited to get into speech! She's standing at the door waiting for Mrs. Dawn to come get us!

That's sweet of you to say, but no, that will not happen.   My daughter has been diagnosed with Childhood Apraxia, which is a neurological speech disorder that makes it extremely difficult to plan the motor movements required to make you each sound, let alone form words.  Children with Apraxia need to retrain their brain on how to make every sound in every new word they meet. 

I made this shirt for my little girl to wear in honor of National Childhood Apraxia Day!

Think of how frustrating it must be to know exactly what you want to say but you can't! Of course our children get frustrated, cry, throw tantrums, remain silent or just give up. Wouldn't you? As a parent this is heart breaking to experience on a daily basis, but we keep pushing on, as do our children! 

My child's AMAZING speech therapist explained Apraxia to me like this: 

Put your hands together like this

Now twist them up like this

Close your eyes and have someone tell you what specific finger on what hand you need to move.  Do this about 10 times. Think of how much thought you put into moving just one finger. This is exactly how a child with Apraxia feels when trying to make ONE sound! Words of course are many different sounds combined so they need to focus and repeat the process usually three or more times for one simple word! Once they learn how to make that one sound they now need to learn how to put it at the beginning, middle and end of a word. All of these things are drastically different and complicated for our children!

Living with Apraxia is very difficult for our children. They will be in years and years of speech therapy. Hours upon hours every day will be spent learning how to make specific sounds. 

While some kids are outside playing with friends we will be playing with our children but we will be focusing on speech, eating and working on speech, taking a bath and working on speech....do you see where I am going here. EVERYTHING we do with our children revolves around sounds and speech! 

My daughter currently receives speech related services three times a week for an hour. Two of these services we pay for out of our pocket, while the other one is a school provided therapy. Parents spend countless hundreds of dollars to get their child the support and therapy needed.  Most insurance companies won't cover this diagnosis as it wasn't diagnosed early enough (before a year) or wasn't a result of injury or stroke. We are lucky enough to have amazing insurance that will cover 60 visits per year. Even though that may seem like a lot, it still does not cover as much therapy as she really needs! 

 

I told her that Mrs. Jenn wasn't ready for her yet, so she sat down and waited for her to come! She loves her therapists, and so do we!!

To get our children the services they need countless parents will stop working, or work part time, so they can get their child to and from therapy. I am one of those parents who now works part time and the other part of my time is spent taking my daughter to and from therapy! I am so blessed to be able to do that but just want to scream "YOU HAVE NO IDEA" when someone says "You ONLY work part time!" I probably work harder than the majority of full time working people, and I am sure all my other Apraxia moms and dads are the same!  It's tough work and I am happy to be doing it.

We will beat this and leave Apraxia in our dust! But while we are doing that we will ALL have countless tears, fears and worries.  Please hug a mama or dad who may be experiencing and living with a child with special needs, of any kind! It's a tough and lonely road! Surround yourself with people and therapists who will ONLY lift you up and support you!