Saturday, May 14, 2016

Apraxia Awareness Day

Apraxia.  It's a word that I knew nothing about years ago, but now it consumes my world.  

What is apraxia of speech?

It is a motor speech disorder in which the brain has problems planning to move the mouth for communication.  Essentially, the child knows what they want to say, but do not know how to get their mouth to cooperate.  It is a neurological disorder a child is born with, more than likely caused by a missing gene on one of the chromosomes, though it has not been proven.  It requires frequent (meaning 3-5 times a week) and intensive (meaning teaching a child how to produce sounds and words, as well as working on language) speech therapy.  Speech must be practiced frequently to build the neural pathway in the brain for speech to occur.  Most children with apraxia learn to speak with frequent and intensive speech therapy, but some do not.

What are the symptoms of apraxia of speech?

"A Very Young Child
  • Does not coo or babble as an infant
  • First words are late, and they may be missing sounds
  • Only a few different consonant and vowel sounds
  • Problems combining sounds; may show long pauses between sounds
  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
  • May have problems eating
An Older Child
  • Makes inconsistent sound errors that are not the result of immaturity
  • Can understand language much better than he or she can talk
  • Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
  • Has more difficulty saying longer words or phrases clearly than shorter ones
  • Appears to have more difficulty when he or she is anxious
  • Is hard to understand, especially for an unfamiliar listener
  • Sounds choppy, monotonous, or stresses the wrong syllable or word"   Taken from

Why does awareness matter?

Because a child with apraxia needs to get frequent and intensive speech therapy to overcome it, and the earlier they get it, the better.  But they are not going to get it if their parents and their doctors and their speech therapists do not know about apraxia.  When Kiddo was little and I expressed my concerns his pediatrician kept telling me "We'll just wait and see.  All children develop differently."  And while this is true, a speech evaluation earlier wouldn't have hurt anybody, right?   We've moved several times since we received the apraxia diagnosis, and every time I've had to inform my son's pediatrician about apraxia.  They knew nothing about speech disorders, only about speech delays.

Because a child with apraxia needs a speech therapist that teaches them how to move their mouth (for example, that p, b, and m sounds are said with the lips and how to press their lips together to make the sound).  This is not something that all speech therapists have been trained in.  In fact, I've had not one, but two speech therapists, when they found out I had a child with apraxia tell me "Cool!  I've never worked with it before."  Um no way.  Find me a speech therapist who knows how to work with apraxia and knows that there is nothing cool about it.  I've had another speech therapist tell me she did not believe in apraxia.  Sorry lady.  It is not a mythical thing.  I can tell you it is very, very real.  Most students studying to be a speech therapist are taught what apraxia is, but not how to work with it.  Personally, I find this unacceptable.

Because several insurance companies will not cover speech therapy for children unless they have experienced brain trauma.  But if children with apraxia need frequent and intensive speech therapy and their insurance isn't covering it, that means parents are paying out of pocket ($60+ a session), or unable to pay at all and get their children the services they need to overcome it.  If insurance companies were made aware of this disorder perhaps they would change their policies and provide more assistance to families whose children have apraxia and other speech disorders.

Because more research needs to be done on this disorder.  Is it genetic?  Can there be some type of screening administered so it can be diagnosed earlier?  Would some form of supplementation or medication help children with apraxia?

Because 1 in every 1,000 children is diagnosed with apraxia.  It is considered a rare speech disorder, but you never know if you may come across the 1 in 1,000.  If you have or know of a child with significant difficulties with speech, you now know it is important to get a speech evaluation sooner rather than later, rather than just playing the "wait and see" game.  Early intervention is very important.

Well, actually I do both. ;)

What are my thoughts on apraxia?

I hate apraxia.  There, I said it and even underlined it.  It is cruel and robs you of the ability to know what your child is thinking and wondering about and what they are saying.

Watching your child struggle to do something that comes so naturally to other children is heartbreaking.  Not knowing what your child thinks about about is heartbreaking.  Not understanding something your child says throughout the day is frustrating and also heartbreaking.  Notice the heartbreaking theme here?  Fighting with insurance and paying hundreds, if not thousands of dollars in therapy bills to help your child, no matter how painfully slow the progress may be, seems completely unfair.  Working continually to help your child do something that comes naturally to other children is exhausting and overwhelming.

But the thing that I do like about apraxia, is it is something that can be overcome.  It is something that can be beaten, with lots of hard work and speech therapy.  It will not steal my son's voice forever.  Every day a new word, a new phrase, a new sentence emerges from that mouth.  Every word is a victory.  And we are winning!

And I also would not be the person I am today without apraxia in my life.  Sure, I find myself exhausted daily in the journey to help Kiddo overcome it.  I have struggled with anxiety and depression because of it.  But it has made me rely on God like nothing else in my life.  It has made me celebrate every inchstone and every milestone, every new word and new phrase out of both my boys' mouths.  It has left me broken and yet made me stronger.

I am so proud of Kiddo as I watch him work hard in his therapy sessions and watch him grow and say more every single day.  I feel so blessed to be his mother.  And I pray that this long, hard journey of apraxia molds Kiddo into a man who will do mighty things for the world with all the perseverance and hard work and sensitivity toward peoples' struggles that he has learned already.

My little superheroes, working so hard to learn to speak, with or without capes on.

Did you know Ronda Rousey had apraxia as a child?  She knocked out apraxia with years of speech therapy and now is knocking out opponents.  A fighter and a champion.  

Together, let's knock apraxia out by making people aware that apraxia exists.

Happy Apraxia Awareness Day!!

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