Title: What can we do next in the Childhood Apraxia of Speech movement? #givingtuesday for apraxia-kids.org (CASANA)
CAS, or Childhood Apraxia of Speech is an interesting disorder from a charity standpoint. Trying to raise money and awareness is difficult for a few reasons the way I see it.
Reason 1: When kids are first dx with CAS, the financial burden on the family is astronomical. Many times (most times) insurance doesn't pay and families are left to figure out how to fund therapy for at least 3x a week (current recommended frequency for CAS is 3-5 times per week). Since CAS frequently has additional co-morbidities, additional cost of therapy for OT and PT may be warranted as well (also not covered under insurance). During this time, families can barely stay above water much less donate money to the charity who has been working hard to make life better for them.
Reason 2: Kids can overcome CAS with the appropriate treatment, frequency, and intensity. As wonderful as this is, kids get better and people move on. Around the time families might be able to donate, they move on as their child has overcome apraxia. It's unlike many other childhood neurological disorders in this way.
I wish what people realized, is that even though there is a lot of work to do, the resources available to families living with apraxia now are so much more prolific than they were 20 years ago. That is not an accident or coincidence. It's the direct result of the work done by CASANA, the Childhood Apraxia of Speech Association of North America. A mom, like me, like you, had a child who couldn't speak. She knew something was wrong but professionals told her not to worry. They went a year with no progress before seeking out other options, and even then, she had to trust her mommy gut. There wasn't anyone to ask or bounce ideas off of. Her son's disorder wasn't even called apraxia then! There were numerous professionals who didn't think it existed!
That alone shows where we have come, but we came that far because of people like Sharon who founded CASANA. The efforts of CASANA made it possible for:
• CAS to be recognized as a separate and distinct disorder only in 2007!
• Fund research so that SLP's are using best practice and our kids have access to best practice to ensure the best possible outcomes
• Headed the efforts for CAS to have a national awareness day on May 14th starting only a few short years ago
• Disseminate information on their website apraxia-kids.org
• Offer webinars and professional conferences for SLP's looking to learn more about dx and treatment for apraxia
• Moderate a facebook group where they provide invaluable advice for parents
• Fund grants for speech therapy via Small Steps in Speech
• Fund grants for iPads
• Promote walks and offer support and materials for volunteers who would like to organize one in their hometown
• Print information materials such as the brochure I gave Ronda that day where she read it front to back and knew instantly that was the disorder she had!
• Ensure that 85% of profits return directly to CAS related programs. 85%!!!
Friends, we are here and are in a better place because of CASANA. Honestly, there is just no other truth than that. I tell you this professionally and personally. I know the staff members at CASANA. They all wake up every day with one goal: to make the lives of the children affected with CAS better; and you know what? My child's life, and your child's life are better because of them.
#GivingTuesday, December 1st is a national 'Day of Giving.' Please, please consider donating to CASANA. Ronda Rousey, a famous MMA fighter would not have spread awareness to millions like she had because I wouldn't have had their brochure the day I met Ronda. That brochure, so thoroughly and accurately explained CAS that Ronda instantly knew that was what she had, even though they didn't have a name for it back then. That same brochure Ronda then reposted on her facebook account spreading awareness to millions! To read that story, go here: http://themighty.com/2015/08/when-we-asked-ronda-rousey-if-she-had1-apraxia-of-speech/
We have a saying amongst a group of us and it's 'we do this for our kids and we do this for all those who will come AFTER.' I'm so grateful Sharon at CASANA had the vision and heart to continue to fight for all the children who came after, like my child.....so you can bet I will be participating this #givingtuesday and choosing CASANA. Will you?
Review from #MyGivingStory