CASANA – Sharing A Cause Close To My Heart


I was recently asked by the folks at Kleenex if I would like to write a post that shared a cause or organization that was close to my heart.    The answer was an easy yes, and I didn’t have to think twice to know which organization I would love to share with my readers – The Childhood Apraxia Of Speech Association Of North America, otherwise known as CASANA.   CASANA is the only nonprofit public charity exclusively dedicated to children with apraxia of speech and their families.

Why does CASANA matter to me? 
Because my sweet, silly and spunky daughter suffers from severe apraxia.

Apraxia is something we had never heard of a year ago, and is now a major part of our lives, and probably always will be.  Due to apraxia, our almost three year old daughter is for the most part almost completely non-verbal and also has extremely limited ability to use sign language.   Due to how profoundly impacted she is, there is a strong chance that she will never be able to use speech (or sign language) as her primary method of communication.  She tries all day, every day, to communicate with us, but apraxia severely limits what she can express.   I’ve shared before that some days with apraxia are hard and dark (and use a fair amount of Kleenex!) but this sweet little ray of sunshine keeps us looking hopefully to the future.

What is apraxia?  Childhood apraxia of speech is a neurological motor planning disorder.  To put it very simply, the act of speech begins with an intention to communicate.  Next an idea forms, outlining what the speaker wants to say.  The words for that message are put into the correct order, using the correct grammar.  Each of those words contains a sequence of specific sounds that must be ordered together.  All of this information is translated from an idea and information to highly coordinated movements of the mouth.   The brain must tell the mouth what to do, in order to articulate the message.  There is a lot that goes into opening one’s mouth and speaking!

The brain in a child with apraxia of speech knows what it wants to say, but there is a break down with the motor planning required to send that message to the parts of the body involved in expressing the message, such as the lips, tongue, jaw and in some children, like our daughter, her limbs, which is why sign language is just as difficult for her as speech.  And to make it even more complicated, with apraxia, the more you want to stay something, the harder it is.  Kids with apraxia can often say something randomly, but can not do it when they want to or when it is asked of them.

For most children with moderate to severe apraxia of speech, a great deal of therapy is needed.  Multiple sessions weekly, for years, with a speech and language pathologist who is experienced in the treatment of apraxia.   Children with apraxia need an incredible amount of repetition in order to help create the road maps in the brain if you will, to allow them to produce the speech they need.   Some estimates say that children with apraxia need close to 3,000 repetitions of a sound or word in order to fully master it.   Our daughter has therapy five times a week, with two different amazing therapists.   Her incredible speech therapist works on breaking down speech and sounds into incredibly simple bits and pieces, trying to help her learn and master them…


So where does CASANA come in?  CASANA provides a lifeline for families affected by apraxia.  They provide resources, articles, local groups and support.   They provide workshops, webinars and conferences for those living with apraxia as well as those working with apraxia.   CASANA also encourages and funds research in childhood apraxia of speech and facilities improvement in apraxia research communities.    They also work to facilitate better public policy and services for children affected by this disorder.

CASANA also has an amazing iPads For Apraxia program.   Many children with apraxia need some form of an augmentative communication device to allow them to communicate.   In today’s world, that usually means an iPad with specialized apps which allow them to tell others what they want, what they are thinking or express themselves in other ways.  We all know iPads aren’t cheap, and in 2012 CASANA provided 60 children with iPads.   Our daughter uses our iPad extensively to tell us what she wants to do, what she wants to play, what she wants to eat, and just to show us how much she knows (she’s always excited to show us all her colors, numbers, letters, things like that, through the use of her iPad).   I love that  CASANA helps put iPads into the hands of kiddos who desperately need them but might not otherwise be able to use one.

CASANA helps organize Apraxia Walks around the country to help raise awareness and funds and to unite families with apraxia.  I am very much looking forward to the walk here in Arizona.  Not only will it be a great opportunity to raise money and awareness but  I am so excited at the chance to connect with others in my area whose lives are impacted by apraxia.

As a parent, this short video can say far more about apraxia than any of the words I have shared with you.  This sums up so much of what I feel in my heart day in and day out, and I am so thankful to have CASANA there, supporting families like ours who are impacted by apraxia.

 Thank you to Kleenex for letting me share some
information about apraxia and CASANA with you.

Kleenex brand, America’s softest tissue*, knows that once one experiences the softness of Kleenex brand tissues, they will be eager to share it with other cold and flu sufferers, friends and strangers alike, as a way to show they care. This cold and flu season, make the care complete with a Kleenex Brand Care Pack, and together we’ll turn a seemingly-small gesture into something bigger, to make everyone feel better. Visit kleenex.com/softness to learn more.

Disclosure: Compensation was provided by Kleenex via Glam Media. 
The opinions expressed herein are those of the author and are not
indicative of the opinions or positions of Kleenex.

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Comments

  1. says

    Your daughter is beautiful. Amazing post. I was unaware of this condition until today. Thank you for taking the time to write a beautiful piece geared to educating without lecturing or depressing your readers!

  2. Terrie White says

    Thank you for explaining this disease with me.. I come in contact with many children, and is always important to keep up with things that may affect any one of them!!

  3. beverly says

    Having a grandson with this condition made this so important. I am learning more about this each day. He spent 5 days a week in therapy 30 miles from his home. He is now in school and each day I see progress. He is a very special young man.

  4. Sue says

    God bless anyone who may have a child with Apraxia. My heart and prayers go out to you. My father, who recently passed away, had a disease called MSA and was very speech impaired. Altho very different in that he was an old man & these are all young children with Apraxia, I can empathize with you. May God heal those who have Apraxia through this wonderful CASANA organization!!!
    Blessings to you all…..

  5. Ellen Jeffery says

    This is not a condition that I had ever heard and I’m very surprised at that. As a mom, it is heartbreaking to think of what you must be going through. God bless you and all you do.

  6. says

    Hi Christi. My daughter does not have apraxia but I do have a heartfelt message for you. When my daughter was 3 (and barely speaking at all) she was diagnosed with mild cp, and severe speech/language learning disabilities including struggles with auditory processing. Our days were filled with speech therapy, ot, pt, and later language, reading, writing, and math tutors. She is now 24, a college graduate, AND a special education teacher :) My message to you, one mom to another: your beautiful daughter already has the greatest gift in that you believe in her. You can only know what her current abilities are.She will grow and change and blossom in her own time. The world sometimes puts up walls. With your love and support she will find ways to blast through those walls, climb over them, dig under them, or take an alternative route around them. I know it can be exhausting, I know. I wish you the very best.

  7. Suzan says

    Your daughters have wonderful parents!!! Thank you for the information, I had never heard of Apraxia before.
    Hopefully speech therapy will work for your beautiful daughter…

  8. Mary says

    This is something new for me. Hard to believe that something like this exists. It is heart breaking to know a child goes thru something like this. Thanks for making this pots, it has given me insight into this disease. I am glad that CASANA exists. Beautiful video, it made me cry a lot.

  9. says

    I had never heard of this before.Thanks for enlightening me on this disease.My daughter was diagnosed recently with a rare form of MS so I know how hard illness or problems with our children affect us.I have used many Kleenex lately myself

  10. A. Still says

    It’s great to see this types of conditions getting more and more recognition everyday. I learned of this condition because my was diagnosed with Developmental Dyspraxia (also known as DCD) and Verbal Apraxia is a comorbid condition that often manifests in Dyspraxic children. Luckily my son is verbal and can communicate most of the time but not always. Often times he is unable to put the right words or even the right sounds together to speak intelligibly. I have had to become fluent in my son’s own language but others around him struggle to understand him. It breaks my heart when he tries so hard to get the right word out and even I can’t understand him. I also have a niece with severe Verbal Apraxia. She only has a handful of words she can say but even those are not clear. So I am all too familiar with the struggles of parenting a special needs child. Good luck with your beautiful daughter. Hopefully someday soon these conditions will get the attention from the public and the medical community that they desperately deserve and need.

Trackbacks

  1. [...] HuffPost Parents asked other special needs parents to create and share care maps as well.   I was game, mainly because I like to get things down on paper, they are easier to make sense of things that way.   It is kind of crazy to see how many people, specialists and “stuff” that you deal with each day, above and beyond what one would consider all of the “normal” parenting tasks and responsibilities.   Mine Care Map is up over on HuffPost Parents, but I thought I would share it here as well.   This is what goes into caring for Grace’s issues related to apraxia… [...]

  2. [...] HuffPost Parents asked other special needs parents to create and share care maps as well. I was game, mainly because I like to get things down on paper, somehow it seems easier to make sense of things that way. It is kind of crazy to see how many people, specialists and “stuff” that you deal with each day, above and beyond what one would consider all of the “normal” parenting tasks and responsibilities. My Care Map is up over on HuffPost Parents, but I thought I would share it here as well. This is what goes into caring for Grace’s issues related to apraxia and sensory processing disorder… [...]

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