SLP Mommy of Apraxia

Tag: Apraxia

The problem with school SLP’s.

I only realized after being a part of the special needs community that school SLP’s have a bad rap. Like a really, REALLY, REALLY bad rap.

I’m preparing a talk next month for Colorado school SLP’s, and every time I prepare a talk for this demographic, I have to tell you they have a special place in my heart. No, it’s not just because I started as one and work as one part time, but it’s because I have literally worked under, with, and around many, many, MANY of them. I have worked with so many of them, and I can tell you they are a jack of all trades. They are the EXPERT in eclectic, and may be the ONLY person in the school who understand in depthly just how a student’s unique communication challenges actually affect them in school.

In the schools, you don’t have the option to specialize. Kids from every disability show up on your caseload and you are expected to be the expert. It might be hard to understand as a parent, but there are soooo many different disabilities and speech and language disorders, and a parent (rightly so) expects the SLP to do right and best for their baby.

Every single SLP I know and have met has a desire in their heart to help children. Please, let that sink in.

When I took Ashlynn to her first private SLP who had never worked in the schools she was asking me about qualification. She asserted that she could never be a school SLP because she felt it was unethical to not qualify students who clearly had some sort of speech or language problem. I had a hard time refuting her. Aside from saying qualification is different in the private versus educational sector, I really had no excuse. I know that funding is limited in the public sector so that obviously plays a part in qualification. I also know if every SLP took her stance, than NO kids would be serviced in the public schools, and is that really what we are going for?

Public school SLP’s have caseloads that are probably double if not more of the private SLP.

Where the private SLP can see kids 1:1, school SLP’s rarely have that luxury. With weekly caseload averages around 45 to 55 and some maxing out at 90 (Yes 90 people I’ve seen it), even the most skilled SLP will not be able to do what a private SLP can do 1:1 for 45 minutes (though they will kill themselves trying).

The result? Parents become outraged at the lack of progress or progress they feel the child should be making. They surmise the school SLP just isn’t as good as the private SLP and they become disillusioned and write them off. They post memes about preparing for battle when going into an IEP meeting! This honestly breaks my heart. I feel bad for the parent who feels the SLP doesn’t care, and I feel bad for the SLP who is trying to manage an unmanageable caseload, writing IEP’s at night, or staying up until 2 Am (true story from an SLP I just talked to last week) to write a lesson plan, only to be ravaged by a parent unsatisfied with the results.

I’m not sure if everyone is aware of this, but ANY SLP in ANY setting is as qualified as the next SLP by basic certification standards. What does that mean? That means, as long as an SLP received their masters degree and the Certificate of Clinical Competence (CCC) through ASHA they can work anywhere. So that means, your school SLP can apply for a job at Children’s Hospital right now and probably get hired tomorrow (because in case you didn’t know there is an SLP shortage as well). For some reason though, there is this perception that the school SLP just isn’t as good as the private SLP. If it’s true, it probably has MORE to do with caseload and workload size than it actually has to do with the qualification of the SLP.

I get calls and emails all the time from concerned school SLP’s desperate to meet the needs of their kids with apraxia but not knowing how. They want to see the kid more, or see the child 1:1, but their caseload simply does not allow for it. They cannot add more hours to the day, yet they still call, or write and wonder if there is something they have not yet thought of. Oh, and here’s a dirty secret. Listen close.

Are you listening because this is VERY important.

If an SLP feels in their heart a child needs private, supplemental speech services, they CANNOT say it. People, they CANNOT tell you this. Why? Well, their license and job is on the line. In most cases, school SLP’s are told not to recommend any sort of outside therapy. Why do you ask? Why?

I’ll tell you. If a school SLP recommends outside services, the parent can sue the district and win, and potentially disbar an SLP from ever practicing again. Are you asking why again? I’ll tell you. If a school SLP recommends outside services, they are essentially saying that the child can not benefit or make progress from the therapies provided by the school, and the school is required by law to show progress. If the SLP recommends outside service thereby saying the school is inadequate, the school gets worried or they will get sued for not providing adequate services and the SLP potentially fired.

Would you take that risk?

I’m not saying unilaterally every school district would do this, I’m just saying, school SLP’s are told this is a possibility, and so they would find it best not to recommend outside services.

You need to know this as a parent of a child with any disability. Some SLP’s will risk their professional license and recommend this to you. Let me tell you though what they are risking. They are risking 4 years of a bachelor degree, 2 years of a masters degree, 1 year of a clinical fellowship, and the usually 3 years of probationary status as a teacher. That is an entire decade of work and dedication to a profession they love and believe in. Would you take the risk then to recommend a parent pursue outside therapy? This is where they are at! It is truly a catch 22.

If you are upset about your school services, you probably have every right to be! I was VERY unhappy with Ashlynn’s preschool, in-class only, speech/language services. However, it is important to place the blame on the right entity and in most cases I can assure you it is NOT on the school SLP’s shoulders. In Colorado, the Colorado Department of Education mandated an inclusion model only of special education services in preschool thus making it extremely difficult for any school SLP to pull a student out into a 1:1 session.

My message today is this: School SLP’s are some of the most phenomenal group of people I ever have the honor to speak with or to. They do not get the option to specialize, and so they pursue advanced training and expertise in every disability that may affect communication: from Apraxia to Angelman’s Syndrome, from Developmental Delay to Down Syndrome, from Cerebral Palsy to Stuttering, from Language Impairment to Nonverbal Learning Disability, from Assistive Technology to Autism, from Auditory Processing Disorder to Articulation Disorder, school SLP’s will see it all and be expected to rise to the challenge. They cannot “refer out” or “discharge for lack of progress” as an can be done in private speech. No, the school SLP is expected to figure it out regardless of the lack of resources, lack of funding, or lack of time.

They will be faced with limited or no space, they will be strapped with high caseloads, and criticized by parents; yet they will persist and pursue only becoming better for it, because of their love for the children and the profession. I personally have witnessed it time, and time, and time again!

I can tell you firsthand, getting into graduate school for speech/language pathology is VERY difficult. It is highly competitive, and here in Colorado, the average COLLEGE GPA was a minimum of 3.87 when I applied. I found this graphic from 2011 but I can tell you things have not changed much. There is a HUGE gap between the number of applicants and the number of people selected.

The disparity should be striking, and please remember that MANY of these applicants will be YOUR school based SLP. If you have the mentality that “C’s get degrees” and you are certain your school based SLP fits the latter, let me correct you. NO average C students make it to graduate school in the first place for speech/language pathology.

Truth

For my final thoughts I wish not to be adversarial. I hope that this article has persuaded you, a parent OR SLP, to reach out to the other side and bring about the change you wish to see. I have the unique perspective of being on both sides, and as such, I have the utmost RESPECT and LOVE for both sides. I truly wish for there to be a conduit of communication, and not a ridge of animosity and distrust; and at the the forefront, I wish to impart a spirit of solidarity between my professional and special needs relationships.

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January 23, 2017
There is either fear or hope. Pick one

Life would be so much less complicated if we lived on breaks. haha. Yes, that is my opener and I realize it’s not only a statement captain obvious would make, but it’s completely devoid of reality.

Seriously though, breaks are awesome. Family comments how far Ashlynn has come. We are all stress free (well at least from school and work stress). We can spend time as a family doing things together we wouldn’t normally have time to do. We’re not in “go” mode all week trying to get to school, to therapy, get the homework done, and all the other million appointments we have.

I don’t have a daily reminder of how hard things are for Ashlynn, like tonight, doing homework with her again. Don’t get me wrong, she’s improving…so, so SO much. It’s just, when we’re doing homework, I realize we’re improving, but nowhere near the pace the class is going. I feel like Ashlynn is more keenly aware of it too now, or maybe she always has been and now she can just verbalize it. Tonight we did her reading, her math, and then practiced her spelling test. I think she said at LEAST 8 times something like, “it’s just my brain! ugh.”

We are not punitive. We are patient. We tell her EACH time, something to the effect of, “Ashlynn, it’s okay sweetie.” and I might add, “you have apraxia and also have a hard time getting the words out, it’s okay. The more you practice the better you’ll get,” but then she’ll stumble on a word again, or say the wrong number when we are counting by tens and hit her head and again announce “Ohhh my brain!’

Hearing it once is hard. Hearing her say it twice is hard. Hearing her say it repeatedly despite our words of reassurance and patience is excruciating.

Damnit. Damnit. I had to walk away and have my husband help her. This isn’t fair!!!

I got on my phone and checked fb. In the apraxia group a woman posted a picture of her son crying while looking at a reading passage. My heart broke all over again. Stupid apraxia. Stupid apraxia. Ashlynn isn’t crying….yet. Will she be? Will she get to that level of frustration?

I was feeling down again. Two weeks back at school and I feel sad again. All that joy and happiness of the vacation gone.

Then I read this. A blog post by an adult who had grown up having apraxia. She outlines the day she went back to her old reports and progress reports and how she discovered that in early elementary school she spent 80% of her time in special education. She says the reports all started with how teachers would comment she was a hard worker and tried hard. I immediately thought of Ashlynn. Every report says that about her.

She talks about how she just wanted to feel normal. She says you could see her “subtle progress” through the years as she started spending more and more time in general education. By highschool she still had report cards that said she was a hard worker and tried hard, but now she had a GPA of 4.5. She muses that she doesn’t even know when that transition from “special education” to “straight-A honors geek” even happened.

She concluded that apraxia fueled her strong work ethic, and though she is sad she never achieved “normalcy” she decides maybe it was all for the best.

I needed to read that right now. I needed to read that because I needed hope.

You know what drives parents of special needs kids? You may think it is the love for them, and yes of course that is true. However, at the core, even on the darkest days, what drives us to face a new day with strength while we hold their hand is….hope.

Hope is the belief that despite any challenges we may face and how many times life will knock us down, we will wake up tomorrow still standing, still growing, and still achieving. Sometimes hope may be a flicker, and other times a fire, but as long as it is still there, we will continue to rise

again

and again

and again.

Thank you Alyson for sharing your story AND re-igniting HOPE.

January 12, 2017
The Gift, Grandma, and more lessons in emotional intelligence

Ashlynn has always given us “papers” with her scribbles on them. She constantly surrounds herself with papers and pens. As impressed as I am with her always working hard, the paper obsession drives me mad. I have papers all around my house! They are treasures to her though, and you never want to refuse a gift from a child.

Ashlynn has a Great Grandma Green who visits periodically and stays with her Grandma Smith. I remember seeing the wall in the room she was staying papered with Ashlynn’s “cards.”

Ashlynn has always been drawn to Grandma Green when she’s here. It might be because Grandma gives her a ton of 1:1 attention. Here is just a peek of the two of them.

Yesterday, Ashlynn came home with a “gift” in her backpack. She made it at school. It looked official. It was wrapped in construction paper. I was excited to see it. I looked at the paper, and it was addressed to Grandma Green. I’d be lying if I said I wasn’t jealous. I showed my husband when he came home, and I gushed about how sweet and thoughtful she was, and then added, “and I’m sooo jealous!.” He admitted he was too. I couldn’t wait to see what it was, but I knew it would be more fun to wait and see.

I texted her Grandma Smith, who is the daughter of Grandma Green and she replied, “Oh boy, not feeling the love! lol.” “Hey Grandma Green will be excited” and then “Wow, I’ve been replaced.” hahaha. I think her Grandma Smith was just as jealous as we were!

We stopped by her Grandma’s house on the way home from school to give her the present. It was the cutest thing ever! I was even more jealous, but at the same time, proud of the emotional intelligence my daughter exhibits daily.

It reminded me of a special moment more than three years ago now where Ashlynn was still mostly speaking in scripts. I titled it “God bless Grandma Green” and it was a special moment too. Not sure what it is between these two, but it sure is special, so once again, God Bless Grandma Green.

December 17, 2016
All it takes is a spark, to light a match, to ignite a fire.

Once upon a time, there was an 18 year old girl who received a full ride scholarship to her local metro university. She took public transportation to get there since she couldn’t afford parking, and simultaneously worked 30 hours while going to school full time. Each day she walked onto the train, she wasn’t sure she would actually receive her bachelor’s degree, but she decided she would take it day by day, one step at a time, and see where life led.

One day, 4 1/2 years later, she boarded the same train with a cap and gown in hand riding to the downtown convention center. This center, the location of her graduation from Metro State University for a Bachelor of Arts degree in Speech Communications.

She could hardly believe it. Walking across the stage, surreal. She had accomplished something she was never sure she would achieve, and it felt awesome. This was the end of her academic career to be sure. Though her emphasis was in disorders and she had taken the coursework to be certified as a Speech/Language Pathology Assistant, she would use her umbrella “Speech Communications” degree to now move up in the car dealership in which she was working to become the customer relations manager.

Insert recession. The car dealership was turned upside down. Future plan….shattered.

Cue phone call from local school district inquiring about an interview as she was one of the few to complete the SLPA certification and they would like to interview her for a new position.

Complete interview and accept new position.

Introduce Deborah Comfort and Roberta Fehling. Two seasoned SLP’s. Pioneers. Feminists. Glass ceiling breakers. I was to work under them. They both would laugh at this description, but I can tell you I was in awe of them. I didn’t even think I would complete my bachelor degree and I’m a millennial. These were two baby boomers who had not only completed their Bachelor Degrees but had Masters Degrees.

The Spark

I was inspired by them. Their accomplishments ignited a spark in ME. A spark, I wasn’t yet willing or ready to realize. I tried to push it down and blow it out. Graduate school wasn’t meant for people like me. I grew up in a humble and modest home, with a common phrase of my dad’s being “poor people have poor ways” and I can tell you, graduate school is NOT one of them.

Long story short, they both believed in me. They both urged me to continue my education, but there was no money for grad school and women like them wouldn’t understand that “poor people have poor ways.”

Deborah decided to push harder. I arrived to work one day with her personal recommendation letter along with applications and GRE dates to get into graduate school. I remember scanning the paperwork and then scanning her face. She really believed in me that much, and just to be clear, Deborah was TOUGH. I knew she didn’t do this to just anyone. Why did she believe in me, I wondered. Could I really be like her and have a professional degree and job?

The flame.

I applied to one distant learning school so I would still be able to work and earn an income. It’s hard to get into graduate school for speech, and most applicants apply to many schools. Oh well, if I didn’t make it, it wasn’t meant to be, I reasoned.

Well, here I am, so I guess you know by now I made it. I completed it. However, I never attended the graduation ceremony……. and I regret that.

This past year, the American Speech/Language Hearing Association (ASHA) which is the governing body that certifies SLP’s, gave me an award for media outreach champion for my encounter and subsequent press coverage of Ronda Rousey and Childhood Apraxia of Speech. I was to be recognized at the annual ASHA conference in November. I wanted to go sooooo bad, but finances aren’t great. Therapy, and doctor copays for a child with global apraxia are pretty crippling. There were other personal circumstances as well that made it seem out of reach.

I kept thinking about how I regretted missing my Master’s degree graduation. It felt silly, but I didn’t want to regret another thing. Have you ever heard of this by Paul Coelho?

I believe it. Oh my goodness do I believe it. Problem is, I have to be willing to listen to the Universe.

Case in point? My husband’s incredibly giving extended family from out of state offered to pool their money and pay for it knowing we were kinda strapped for cash in this particular time of our lives. I rejected it. I felt it was charity and if I really wanted to go I could charge the entire thing on a credit card. They offered one last offer, and I STILL declined it.

I was talking to someone about it, and she challenged me on this. She urged me to accept the offer with grace, knowing I would make the same offer to someone else if I were in the position to do so.

Yes, of course I would, but I don’t know. It still felt silly. Accept money from people so I could go receive an award? It seemed self-serving and somewhat selfish. I can’t say it didn’t poke at me though.

A good friend and fellow apraxia mom Linda Power, offered to go and pay for the hotel. She had lived in Philly for a time, knew her way around, and was excited to go back. In this way, I would have a companion, and would only have to pay for the price of my plane ticket and ASHA registration.

Hmm….that offer was tempting. Plus, I don’t believe in coincidences. What a coincidence Linda lived in Philly for four years and she’s a close friend of mine and would like a quick girl getaway. Hmmm…November happens to be my birthday month. I could ask everyone to just give me money instead of presents to pay for my plane ticket.

I asked my mom if that was rude. She didn’t think so, so there we were! Philadelphia, Pennsylvania!

SUCH an amazing time!

The fire

I attended the ASHA convention last year, and I never thought to attend the award ceremony, which is ironic, because it’s the ONLY reason I went this year and that’s only because I was part of it.

I left soooooo inspired. I heard story after story of SLP’s in the field and their lifetime accomplishments. The stories were personalized and part of a video montage. Each story was unique and touching. I had tears and Linda had tears. I couldn’t believe this girl from Colorado who never truly believed she would finish college was sitting in a room with these esteemed people. If you ever attend ASHA, I highly recommend going to the award ceremony. It will make you proud to be in this field.

Also, it made me want to do even better. It made me want to aim even higher. More importantly, seeing the stories of these ordinary people who did extraordinary things, made we want to be more like them.

I don’t know what the future holds. I guess I’ll just do what I have always done, starting from that highschool graduate who stepped foot on public transportation to go to college. I’ll keep putting one foot in front of the other, day after day, because if I do that, I don’t know where it will take me but it takes me further than I am now. It take me further AND my sweet girl Ashlynn. Kids learn through example, or I learn from her. It seems like a mutual enterprise in this house.

That’s what she does though. She wakes up every day putting one foot in front of the other, and for her, even THAT simple act isn’t easy….yet she does it. So again, I have to ask myself,

What’s my excuse?

November 28, 2016
Anxiety as a special needs parent feels like…..

Anxiety as a special needs parent of Childhood Apraxia of Speech feels like……

It’s my fault. Endless intrusive thoughts wondering what caused it, and despite coming up empty, still feeling like somehow it must have been something you did.

I’m not doing enough. Despite working tirelessly and endlessly for your child, you will continue to see her struggle, and it feels like you have missed something; and the enormity of the responsibility is crushing.

Doubt, doubt, and more doubt. There is always a decision to make in parenting, and it feels like there are never any easy answers, only tough choices, and you’re never sure you have made the right one.

I’m failing. Thousands of dollars dumped into therapies that help, endless restless nights, tireless fights, but still seeing low scores leaves feelings of failure…and nothing is worse than feeling like you’ve failed your own child.

Getting on and off the bus at the wrong stop over and over. Even after months, sometimes years of therapy, you still feel like there is no end. When one area seems to improve, another area of concern arises.

I’m falling. Out of touch with friends, family, life outside of therapies, and yourself.

Exhaustion. Physically. Mentally. Emotionally.

Never ending worry. Am I doing enough? Will my child make friends? Will he/she be successful? Will people see past their disabilities and see their abilities?

The weight of the world at times. A result of all of the above.

Lonely. Finding support and others who truly understand this journey is difficult. Isolation is real.

Thank you to Kendra Jenkins, an apraxia mom and advocate who commiserated and collaborated with me to write this simple, but hopefully powerful post. There is nothing easy about being a special needs parent, but there is always a silver lining, and the silver lining is finding others who can bring you comfort simply by saying “me too.”

Me and Ashlynn

Kendra and Talan

October 23, 2016
An open letter to millennial cynicism, indifference or neither?

Non-profit.

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 apraxia-kids.org 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.

NO

F that.

What is wrong with this generation? I actually typed that in and found this enlightening article. http://www.givinginstitute.org/news/258798/Breaking-Through-Millennial-Cynicism.htm

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 news 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.

October 4, 2016