An open letter to millennial cynicism, indifference or neither?

By Laura Smith|October 4, 2016|Apraxia, apraxia blog, Childhood Apraxia of Speech, Giving Tuesday, Therapy for apraxia, walk for apraxia|


What does that word mean to you exactly?  No really, I have over 300 email subscribers, 1300 fb subscribers,  and….this can’t be right…but according to my statistics I see 10,000 visitors per month.  That’s crazy considering I get maybe 40 likes on a good day on my fb page and a couple comments per month on the blog.  I know SOMEONE is reading this blog though,  so sincerely, I want to hear from you.

I never thought about non-profits much before I became involved with CASANA. My family is Catholic, so my mom donated (and still does) to Little Sisters of the Poor, St. Jude’s, and I think…maybe some veterans group because my dad and her dad are veterans.

When I started a family of my own, I followed in my mom’s footsteps donating to St. Jude’s and a couple of  times to March of Dimes.  My sister donate (s) (ed) to St. Jude’s too and at one point we had the conversation that the free stuff they send us with their mailers, which include note pads and address labels has at this point, exceeded the price in the donation we actually sent in!  Basically, what good was our donation actually doing?  It didn’t stop us from donating though.

Well, then I had a daughter, and then she went onto have delayed milestones, and THEN she went on to be diagnosed with Childhood Apraxia of Speech, and THEN, I found CASANA.  CASANA…which in my mind was this HUGE non-profit.  Actually, though, I didn’t KNOW I had found CASANA at the time.  In my sad, lonely hour of desperation, I found a facebook group called “Apraxia Kids: Every Child Deserves a Voice.” It had a bunch of followers, so it seemed legit.  Only problem was, I had to request to join!  Why is that a problem, you ask?  Well, let me put it this way.  When your children go to bed, and you are awake, and one of them has just been diagnosed with a rare disorder….you have questions, you are sad, you want to meet someone….ANYONE…who knows what you are going through. Oh, and I’m a millennial, and I like things NOW.

I was approved very quickly. Yes!  Score!  I read through some posts and posted my own.  I was sad and lonely and needed someone to tell me it would be okay.  Numerous people responded quickly.   I liked that. I hate to admit I’m that typical millennial…but instant gratification..yep.  This was my group!  One of them was Sharon Gretz.  That name meant nothing to me at the time, but she was kind, and welcoming, and seemed to understand.  I went on to post many, many more posts from my first.  Each time I was met with wonderful and supportive comments, and most of the time, Sharon would comment as well.  I’m not quite sure how long I was in the group, but I realized Sharon knew her stuff.  This Sharon lady got it.  Then I realized, this Sharon lady was the admin to the group.  She basically ran it and moderated it.  I appreciated her dedication to not only helping and responding to me, but to most of the posts that were written.

Through the group I found out an apraxia conference was coming to Denver, where I lived.  My daughter was dx the previous year and I KNEW I had to go.  The conference seemed big and important.  I knew Sharon would be there and she asked people to say hi to her.  I still had not connected CASANA to in my mind.  I actually never gave it a though that Sharon ran a non-profit and was behind the fb group but also the conference.  Seriously, not one thought in my mind.  I knew she was connected to apraxia though and she would be there.

I met her and it was awesome.  There are only so many times I can talk about the encounter, so read more of my blog if you are interested.  I sat with a group of SLP’s who talked about a bootcamp.  This was when I first realized that apraxia-kids, the fb group and the website, was connected to a non-profit called CASANA.  I started to realize that Sharon was the founder.  After that conference, I had decided I wanted to get into bootcamp, but I also felt guilty because I had no money or funds to donate to CASANA.  I remember telling a previous bootcamp graduate and excellent SLP in NY Christine Murphy, that I felt incredibly guilty to know I had taken so much from CASANA and wasn’t able to give back.  As many parents who read this know, having a kid with apraxia means a lot of money goes to therapies since most insurances don’t cover.  She told me not to worry.  She said she had seen I was active in the apraxia-kids fb group, and THAT was giving back to CASANA.

That really hit home with me.  It made me wonder why that was giving back.  Why would responding to posts be giving back to CASANA?  Then I realized.  Sharon takes her job as admin to that group very seriously.  She wants to give people help and advice, and not just ANY help and advice, but quality advice.  I remembered how she had approved my request to join late at night, and then answered my post. I realized in that moment, Sharon works more than her 9-5 for that non-profit.  She literally works around the clock.

I was accepted to the bootcamp, and that’s where I REALLY understood the connection.  I met most of the CASANA staff members and was blown away.  These two women were once moms like me, who founded this non-profit not only of the love for their children, but to help other moms in their situation…moms like…ME.

CASANA was offering this costly intensive training for minimal cost to the SLP’s attending it, so that quality therapy and expertise would be available to families spread out through the entirety of North America.  Yes friends.  Many neighbors to the north…aka…Canadians were there.  Sharon was VERY clear at the start of bootcamp that her expectation for every SLP in that room sitting before her would be dedicated to CAS education and awareness.  I actually was a little scared of disappointing her, her expectations seemed so large.  However, I KNEW this was a woman dedicated to the cause and dedicated to her non-profit.

After bootcamp, I went back to my Denver community and through a course of a conversation with Sharon realized the Denver Walk wouldn’t happen. As most of you know, this is what prompted me to become a walk a coordinator, and actually, my last post highlighted for me that this is how MOST walk coordinators around North America find themselves in the same position.  That was kinda news to me.  As I mentioned in my last post, I met another CASANA staff member through this endeavor named Justin, and if there were ever a person meant for his job as event manager…it’s him.  Calm, encouraging, kind, and supportive; despite 90 other walks taking place nationwide, Justin never makes you feel rushed or that you don’t matter.  Encouraging, passionate, and ALWAYS positive, Justin will help any person coordinating a walk feel they are the best.  We need him!  He talks to ALL 90 of us every year as part of his paid position.  The walks literally could not happen if we weren’t taking directions from Justin.

That is why I was so taken aback to receive a private message the night after my walk from a random person in the U.S.  She was concerned about a post I made in the Ronda Rousey: Knock out Apraxia group in which I said 85% of funds go back to the community.  She said I was “mis-leading” donors.

People, let’s just say she caught me on the wrong day.  I literally get this post after I am sitting on my couch, utterly worn out and exhausted from coordinating a walk of over 400 people….for FREE.  Literally, the last thing I need/want to hear after spending months and hours of my free time coordinating a walk for a non-profit I know personally now and believe in, is how I am misleading people.


F that.

What is wrong with this generation?  I actually typed that in and found this enlightening article.

Why doesn’t my generation trust non-profit’s anymore?  I wish I could say this woman was an outlier, but I don’t think she is.  My own husband the year I first coordinated the walk (and this was after I had received all this education from CASANA for only $500 and a plane ticket to go to bootcamp) asked me about the company’s money.  We actually pulled up the public IRS form.  I can’t recall exactly what it said Sharon made, but it was less than our salaries and I reminded him she literally worked around the clock.  She answered me in the wee hours at night when I needed her.  I’m not saying she does that all the time, but she  did that time.

Something being touted this year, by others and by myself was that 85% of donations go directly back to the community via research, education, grants for therapy, and iPads for kids. This percentage was based on an independent audit of the 2014 form.  The reason for an audit and not just looking at numbers like the public can do on the IRS form is, if one were to JUST look at the money spent on grants or on iPads, it does NOT take into account the person (or persons) behind the scenes getting paid to process that paperwork and do the dirty work.  You can’t just look at one number that shows what is donated, without taking into account that some salary money ALSO made that happen.  It’s just common sense.  You can’t have CASANA donating this and that without someone behind it actually processing it.

Oh..and what about the walks that actually bring in most of the donations.  They have two staff members helping 90 volunteer walk coordinators with that task.  TWO.  They rely on volunteer coordinators to  maximize the amount of money going directly back into programs and grants.  These people shouldn’t have to work for free!!  Yes…gasp.  They have a salary.  If they weren’t there, no walks could happen period. Volunteers can do a lot, but we can’t do everything.  Let me tell you, these two people work beyond their 9-5.  I have had them email and message me back and give me their private telephone numbers so they would be available on the weekend when walks take place.  That should speak volume to their dedication. They DESERVE their salary and work over their salary and shouldn’t be scrutinized and judged.

I told this person that the Denver community had benefited greatly.  I knew numerous families who had received an iPad, and literally know tons of families, including myself,  who have now received the grant from Small Steps for therapy.  Oh, and we also have THREE SLP’s in the area who have been trained by CASANA under their “education” agenda.  That’s three SLP’s available to consult, provide differential dx, and to also see kids with apraxia for therapy ensuring they get the best possible therapy.  Folks, that is DIRECTLY affecting our community, and just because it’s not categorized under “therapy” on an IRS document, it doesn’t mean it wasn’t the outcome.  Just ask my clients, or the other bootcamper’s clients, or the people who have attended any presentation we have given.

That brings us to research.  This person was concerned that in 2014, 30K was given to a research study.  Gasp.  How dare they?  I mean, really, what is the alternative?  CASANA should invest thousands of dollars into helping kids get speech therapy that doesn’t work for apraxia?  Seriously people, that is not an exaggeration.  Apraxia is THAT serious of a speech disorder.  If you are reading this blog and have any familiarity with apraxia at all, you know that is a potential outcome of the disorder, no matter HOW MUCH therapy you have.  We need research so we know what to do!!  So that the future generation of SLP’s currently in graduate school are TAUGHT what to do, unlike me.  If it wasn’t for CASANA, I still wouldn’t know how to help my kid!  I helped her for a year using what I thought were “research based” interventions….and they were…but NOT for apraxia!

Finally, lets talk awareness.  Have you ever told someone  your kid has apraxia and they didn’t know what that was?  Okay let’s all have a good laugh now!  bahahahahahahaha

I mean, parents reading this are ALL nodding their head right now and being like yeah…most people I say apraxia to don’t know what is is.  So guess what we need?  AWARENESS.  We need people to be aware so our kids can get the help and understanding they need for their unique needs and profile.  Guess what this takes?  A PERSON driving that.  A person who gets  a salary.  CASANA makes TONS of graphics, informational brochures, inspirational and informational memes for all of us to share spreading awareness. Apraxia Awareness Day is now a THING thanks to them.  I’m not quite sure what category that falls under on the IRS form..but I’m thinking it’s probably salary.   I could go on but this post is getting long.

Bottom line is, why are we so cynical of non-profits?   I know it’s partly because major ones make the news14344244_1657729304539794_3707920287651978254_n about scandals, but people, CASANA is not this organization.  If it were, do you really think 90 volunteers nationwide would commit to coordinating walks that take an unfathomable amount of work and time?  All 90 of us know the staff members at CASANA and we don’t get ANYTHING in return than what CASANA offers to EVERY child and family affected by apraxia: quality research, education for parents and professionals, speech therapy grants, and iPads for kids.  We don’t get anything more, oh wait, I take that back.  They gave us a picture frame last year to frame our favorite walk picture.

Come on!  Stop the cynicism.  Support the cause!  Our children need you!  Our children deserve a voice, and CASANA is working tirelessly!  With event managers texting on weekends, to the executive director responding to fb posts written by  desperate sad parents at night, CASANA is a non-profit dedicated to making sure every family feels supported and EVERY child has a voice!

Oh, and as a last word, I do really want to hear from you.   What does the word non-profit mean to you?  Does it incite doubt and suspicion or hope and inspiration?  Maybe, you just have never thought about it much and indifference is the best word to use?  I don’t know.  That’s why I’m asking this last one is NOT rhetorical.  Tell me your thoughts.






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