When you think about the great big universe, it’s pretty darn amazing just how much is really “out there.” There are so many molecules floating around in the great wide world all looking to be connected to one another in some significant kind of way.
So, what does this have to do with CAS? Bear with me, and I’ll tell you. I was poking around on the Internet about 6 weeks ago when I stumbled upon this site called “Silent Stars.” I was curious. It had to do with raising money for apraxia and it was local–at least to me–Glenview, IL.
A few emails and a phone call later, I learned that Marjorie Beto, (mom to Rebecca, who has CAS) started “Silent Stars” a non-profit organization, as a way to help her daughter and others who struggle to understand and make gains in CAS. Her goals are noble: she wants to raise money to help support the research efforts of CASANA.
Ms. Beto’s first fundraiser was this past spring (2010) at a bowling alley along with a silent auction. Within about 5 months of campainging, Silent Stars raised about $14,000 for apraxia! They plan to do it again this year–in fact, it’s already on the calendar for May 1, 2011. This second annual bowl-for-apraxia goal is to raise wnough money for kids to have an AAC who would otherwise not be able to afford it. So, polish up your bowling shoes and plan to be there!
When asked more about her personal struggles with CAS, Ms. Beto mentioned that before Rebecca (now 7.6yrs) was diagnosed she had never even heard of it. “Rebecca has some other issues as well–sensory issues and epilepsy. I was more blown away with this epilepsy thing than hearing the apraxia diagnosis. It was just one more thing. In some ways, I guess you could say I sort of ‘knew’ something else was going on. Every situation is different. Every kid is different. Rebecca has made great strides.” And she has. In fact, Dee Fish, SLP (who I blogged about last week), is her SLP! Talk about being in “good hands.”
Ms. Beto–who is also the mother of two other children–continued to share her concerns for parents just learning the diagnosis, “I can’t imagine just how scary and frustrating it must be to learn the diagnosis for the first time and not be able to see anything outwardly wrong with your child.” I nodded in agreement. Yes, I know. “It’s my goal to get the word out. Help others network and advocate….some folks don’t always know how to do that…what the first steps are. I just want to encourage awareness for apraxia.”
I don’t know about, you but I think Ms. Beto is doing a stellar job of navigating us parents in the right direction for advocating for our “silent stars.”
For more information on the Silent Stars Foundation (SSF), please visit their website at:
- A lot! Can I tell you how excited I am for the next few weeks on Leslie 4 Kids?!
- Monday, November 22nd I will be interviewing Teri Peterson, SLP (from MN) and giving away a copy of her fully illustrated hardbound copy of “The Big Book of Exclamations!” It’s an adorable book for kids who have CAS.
- Monday, November 29th I will be interviewing Ronda Wojicicki, SLP (from NJ) and giving away a copy of her book, too–“Speech Class Rules” It’s geared for all kids who have a speech disorder/delay/concern.
- Both women have links to their websites on my blog. Check ’em out ahead of time
- Managing the holiday ho-down, a temporary “column” replacing “Just 4 Moms”
- Teacher gifts
- SLP gift ideas