Apraxia Awareness Day – May 14, 2012

This is the face of apraxia, but apraxia is not what defines him.

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This is what defines him:

Funny, Happy, Smart, Handsome, Helpful, Inspirational, Friendly, Empathetic, Thoughtful, Athletic, and Loving.

On May 14, please join us in wearing blue and white to support Apraxia Awareness Day.

Speak for children that cannot speak for themselves.  Every child deserves a voice.

Baamaapii.

Apraxia

This is my first blog post since the beginning of March.  Running fell by the way side.  Clean eating is becoming more and more difficult to stick to.  Pretty much anything that I was doing for myself has been put on the back burner, for the time being.

My son was diagnosed with Childhood Apraxia of Speech in March.  Apraxia is a motor speech disorder in that there is great difficulty planning and producing the specific movements required to produce intelligible speech.  His brain has difficulty sending the message to his mouth to move appropriately.  He had been in speech therapy for one year before it was determined that he does not have a speech delay but a moderate to severe speech disorder.

He never babbled or cooed when he was a baby, but I attributed that to him just being a quiet baby.  I had an inkling that something was wrong when he was around 18 months old.  He spoke few words and the two words that he did say (fish and tree) were no longer said.  He used the word “Da” to describe everything.  He would mainly communicate through gestures.  He became quite adept at it and could tell full stories in charade.

I brought up my concerns with our family doctor.  She was very supportive and wrote a script so that we could access private speech therapy sessions through our insurance companies.   We didn’t put him in speech therapy until he was 2 years old because friends and family kept telling us that he was just a late talker and he would speak when he was ready.  He has been in private speech lessons for one year and we now know that he will not just talk when he is ready.  He will require intensive speech therapy to help him overcome this.

The main characteristics of apraxia are inconsistent errors when asked to repeat the same word multiple times; difficulty moving from sound to sound; and inappropriate stress on syllables and words.  He exhibits all three characteristics.  He also has more mistakes in longer or more difficult syllables and words.  Most people have a very hard time understanding him when he speaks.  I am mainly the only person that can understand him 95% of the time.  With one year of speech therapy, others can understand him 25% of the time…that is when he decides to speak.  He is growing self conscious of his speech and often gets frustrated when he is not understood.  It is easier for him when I am around because I can act as his interpreter.  It is becoming harder for him to communicate with others his own age because some children do not understand why it is difficult for him to talk and call attention to it (sometimes not too nicely).

The good news is that it does not appear that his apraxia is associated with other cognitive issues.  His receptive language (what he understands) is well beyond that of others his age.  His memory is phenomenal – he remembers locations sometimes after passing an area once.  Now that he gaining more vocabulary, I notice that he has books, movies, routines all memorized, sometimes after only seeing it once.  He has learned his ABCs, colours, and counting.  He is getting better at consistently saying them correctly.

Since his diagnosis, we have seen great improvement.  He is now fairly consistent with the p,b, and m sounds.  We are now working on d and two syllable words.  We have also started him on a few things to help him build the areas of the brain to assist with his speech.  Some are proven methods; some are what seemed to help other children with apraxia.  He has been continuing speech therapy once per week and we are looking to increase him to twice a week.  He is on the waiting list for intensive group therapy sessions in Toronto.  He takes fish oil supplements daily.  He has full use of my iPad that is now loaded with speech therapy apps.  He uses an indoor trampoline.  We are researching sound therapy providers in the area.  We will be getting a referral to a developmental pediatrician at his appointment with his family doctor in two weeks.

It has taken me a long time to talk about this.  I put on a brave, smiling face every day to keep encouraging him.  What he doesn’t know that I lay awake every night questioning if it was something that we did to cause the apraxia (the cause is unknown but some speculate it to be from brain injury, fever, exposure to toxins, etc).  I lay awake every night praying that the next day will be a good day, free from speech setbacks or bad experiences with other children or adults.  I lay awake crying on nights that it does happen, my heart broken that he has to try so much harder than other children.  I scour the Internet looking for resources that could help him and our family.  I lay awake thinking about how to afford his continued speech therapy and other associated costs while taking leave from work for care of the family.  I lay awake thinking about how to balance his speech therapy sessions while allowing him time to just be a kid.  I lay awake wondering if his sister is affected by the time I am spending on this.  I lay awake flip-flopping between anger, sadness, acceptance, resolve and optimism.

At least I can take comfort that I will do anything and everything to help him through this.  Every child deserves a voice and right now I have to be his.  I can only hope that one day, he will have his own.

For further reading on apraxia, please see www.apraxia-kids.org

Baamaapii.