SLP Mommy of Apraxia

Category: apraxia blog

Anxiety and PTSD. What you don’t know about special needs parenting.

Can everyone agree parenting is stressful? I’m sure we all can. I read something the other day though that perfectly described my life.

“If parenting can feel like a roller coaster of anxiety, than special needs parenting is a whole carnival.” I’ve also read that PTSD is common among parents of kids with special needs.

I’ve also read and seen quoted a very popular article: Autism moms have stress similar to combat soldiers.
Now, I’m not pretending to know THAT stress or try and compare, but seriously people, if you have a kid with special needs it’s really not that hard to believe. If you don’t, it may be hard to understand, but let me assure you it’s INCREDIBLY stressful.

Two years ago, I wrote a very scary blog post that I still can’t re-read. I’m not even going to link it here because that would require me going back and potentially reading some of it. It detailed a near drowning incident with my daughter when she was in a group swim lesson. I still haven’t really ever recovered from it. We are around water all the time too, and everytime I’m stricken with an anxiety I can’t quite put into words.

I really don’t know if it’s the global apraxia or her disordered sensory system, but Ashlynn does not have normal reflexes, for lack of a better word. Instead of her body responding appropriately to survive, hers does the exact opposite. Add to it an under-responsive sensory system in which she rarely feels pain, and it’s a recipe for disaster.

An under-responsive tactile system is rare, but I find it is very common among kids with “global” apraxia, and that “global” word is important. It’s scary though. Let me give you some examples.

When Ashlynn was a baby, probably around 4 months or so, I was getting her ready for bed. That’s when I noticed her baby toe had a hair wrapped around it and was swollen. It was so swollen I couldn’t even see the hair as it had created a turniquette. My baby was never fussy. She never cried unusually more than any other time. I had absolutely no indication this had happened. We had to go to the ER and get it removed it was that bad.

In another instance when she was probably three, we were at the playground and she had a full speed head on collision with another boy. Both kids had immediate goose eggs swelling on their forehead; the only difference? The other boy burst into tears and went running to his mother while Ashlynn followed, not crying, wondering if he was ok.

Another one happened recently right as school ended. Ashlynn woke up with a horrific stomach ache. Knowing she NEVER complains of pain I start panicking (it’s that anxiety I’m talking about) and immediately call the doctor and take her in. The result? She had a burst ear drum from an ear infection!! She wasn’t sick or sniffling, she never complained of her ear, pulled at her ear…..NOTHING. The pain in her stomach was described as “referred pain.” I’d never heard of it before. Apparently it’s a thing.

When she was a baby, she didn’t chew her food. Literally if something went into her mouth she swallowed it and this lasted well into her toddler years. I remember a friend came over one day and brought bagels. As we were chatting, Ashlynn started choking. I swooped in, turned her upside down and started violently patting her back. An entire piece of barely chewed bagel appeared on the floor. My friend was horrified. So was I, but sadly it wasn’t the first time that had happened. She’s going to be seven and I still cut up her grapes and hot dogs. If she chokes, it literally is her life on the line. How can I NOT helicopter??

Has your child ever been choking and looks at you with wide, terrified eyes? I’ve never had that experience even once with my son, but with Ashlynn I can’t even count the number of times it’s been so many. Each time brought a flood of overwhelming panic and anxiety.

These are just four of MANY, MANY, MANY instances. Hopefully you have some idea now why I helicopter. I used to think if she could just talk she would be able to tell me what was wrong. Hah! If you still aren’t convinced these examples are enough reason for me to have the anxiety I do, let me outline ONE day in her life that happened this weekend.

We went to a ski town called Breckenridge to visit my husband’s family. We were walking along the side of the street when we heard a car coming. Ashlynn wasn’t in the middle of the street, but like any reasonable parent we both beckoned her to move closer to us. For reasons I probably will never know, she freaks out and goes darting into the center of the road! I went running after and ended up dragging her back to the side. I mean, what is that?? Tell me. What IS that?? I don’t know what that is, but I DO know my stress level went through the roof. I DO know that next time we are in that situation I will now be helicoptering because her natural instinct for whatever reason was to dart into the CENTER of the street.

Next was a trip to the hotel hot tub. As much as I am at lakes and around water, you would think my anxiety over her near drowning incident would have subsided. Nope. I immediately started panicking thinking about it. I had remembered their swim suits but not the floaties. Their cousins assured me it was shallow and even the shortest kid amongst us could touch the bottom. I still with every being of my body want to tell them no, but that’s MY issue and I don’t want to punish my kids for my anxiety. I guess it’s fine if I’m right there. A hot tub is small. I can save them if something happens. They both wanted “privacy” and change in the bathroom with closed doors. Unbeknownst to me, they went out a different door and made it to the hot tub without me. When I realized they were gone , my stress goes through the roof again and I take off into a sprint toward the hot tub.

They were there with their cousins having fun and splashing around. I wish I could say I breathed a sigh of relief, but my stress and anxiety levels could not recover that quickly. I scolded them for leaving without me.

I took a seat on the bench. I watched Jace (my four year old son) jump in (he doesn’t know how to swim) and his head goes under. I stand up and immediately I see him dart out of the water. A human’s natural instinct is to stiffen their body and shoot toward the top, which he did.

Dear God, am I going to get through this? Ashlynn was being more cautious. Okay that’s good. My sister-in-law came in to keep an eye on her kids. My anxiety started to come down. I started to relax (a little). Suddenly and silently, as I’m watching Ashlynn, one second she’s walking, and the next second her head falls under the water. She NEVER voluntarily puts her entire head under the water. In fact, we’re working on that in private swim lessons. I tell you this so you can understand that if her entire head was underwater it was NOT of her own volition. My heart starts pounding, my ears start ringing, I’m seriously panicking. I’m taken back to that day two years ago in swimming lessons and I have to jump in again and save her. Luckily my older nephew was in the water and no sooner did I say grab Ashlynn, he had her in his arms.

She looked scared. Spooked. My nephew looked scared. I’m not sure if it was because of Ashlynn or my reaction. My hands were shaking. In fact, they are shaking now as I type this.

Unlike my son, who went under water and then came shooting out of it, my daughter’s natural instinct is to pull up her legs into a fetal position. I know this, because I saw her do it in the pool that day two years ago, sitting underwater, and I also know this because she is much taller than that hot tub was deep. The only way she could have gone under was she pulled up her legs.

She stayed along the side of the hot tub after that as I sat there wanting to just pull my kids out and go home. The stress is just too much. I need to keep her in my house in bubble wrap and then at least I know she’ll stay alive. I’m being sarcastic of course because the rational side of me realizes I can’t do it, but there is an irrational side that very, very much wants to do that. I’m not gonna lie.

My husband walks past at that moment. He mouths a question “are you ok?”

I shake my head no.

He back up and walks in the pool area. He asks me what’s wrong. Just talking about it has me panicking all over again. He tells me to leave. I can’t stop talking. I’m so scared. He says he will stay, but he’s not even looking at her. Doesn’t he realize he needs to look at her every second? He tells me to leave again more firmly. I hesitate, and then he says my anxiety is making everything else worse and giving everyone else anxiety. I’m upset, but not at him. I’m upset because I know he’s right, but what can I do?

He managed to get her back in the water he told me later, and hopefully she doesn’t have PTSD over it like I do.

So yeah. It’s not hard at all to believe mothers of special needs children have stress levels similar to that of combat soldiers, because our stress never goes away. It’s a daily fight for your child’s survival.

Ashlynn staying alongside the hot tub after the incident

Playing around and being silly. Love her duck face here.

d

July 17, 2016
Apraxia is for the BEST?

The 2016 National Conference on Childhood Apraxia of Speech has come to an end. As I sit in the plane, I look at the burnt orange, red, and brown sunset setting over wispy clouds and the windy city. Since I live in Denver, we are flying west, and it feels like we are literally flying into the setting sunset sky.

I get to reflect on my time here in Chicago, and honestly, the first and foremost emotion that I feel is gratitude. It is almost unbelievable to think that just a few three years ago, this conference came to Denver and though it seems like a long time ago, if I close my eyes, I can still remember the emotional whirlwind that was that time.

I was honored to give a talk with a fellow SLP, Alyssa, who specializes in Apraxia of Speech out in Las Vegas. It was Alyssa who had initially pitched the idea to me, and speaking with her felt as natural as breathing the air. We seemed to find a perfect rhythm despite living miles away and not seeing each other in person in the last two years.

Alyssa is inspiring to me, because I guess as a mom and SLP, I feel like my passion for kids with CAS is expected and natural. I do after-all, have a personal buy in. However, Alyssa’s passion comes strictly from knowing, finding, and heeding her calling. Treating kids with apraxia is truly what she was meant to do and I believe that is conveyed in her words, her actions, and her energy!

When we started our talk, Alyssa polled the audience to see how many people were parents. The Apraxia conference is unique in that is a place for BOTH professionals and parents to come and learn about CAS. Our audience was comprised of mostly parents, as we expected; but what caught me by surprise was the amount of many first time parents.

As they raised their hands, I was transported back in time. I remember being a first time parent attending the conference. I was anxious and overwhelmed, hoping I would learn things to help my daughter. This year though, I was the speaker, and I was looking out onto the sea of parents, and as I scanned their faces, I was emotional remembering my very self sitting in their seats. Alyssa said it best when she quoted a professor who was speaking at her daughter’s college orientation:

“You will succeed because you are HERE.”

All of these parents had shown their sacrifice and their commitment merely by coming to this conference, and she was absolutely right. I remember Sharon Gretz telling me once when I was lamenting over all of my daughter’s negative prognostic indicators, “Laura, never underestimate the influence of one kick-ass family.”

Oh, and that leads me to Sharon. As I said in my previous post, I did exactly what I set out to do, and hugged her and thanked her for everything she has done not only for me and Ashlynn, but to now the clients I have that benefit from CASANA. Ever humble, she blows me off, but I do hope on the days she is receiving criticism or feels low, she remembers all those she helped. This year as I shared my story of how Sharon helped me with many participants, I was surprised (not really) to hear how all these other people had also found hope because of CASANA and because of Sharon. People literally tearing up describing how Sharon had so graciously taken her time to listen to them and help them as well when they needed it the most. People who now were willing to volunteer everything they could to give back because of one person’s act of kindness.

Me with Sharon Gretz and another SLP apraxia mommy Nicole

This conference truly is unique. There are world renowned apraxia experts just as gracious, patient, and willing to speak to parents and give them free advice just as Sharon is, and I can’t help but to believe that is fostered from the top. If you are part of CASANA, you want to be as of much help to others not because you are expected to, but because you genuinely want to. In my case, I want to pay it forward. I can never repay Sharon, but I can help others and give them what she gave to me, or at least I hope I can.

International Apraxia Expert David Hammer walking toward the stage. At the conference, he is as accessible to talk to as any attendee.

This year, three years later, it’s hard to believe what a different place I am in. I wasn’t even anxious to give my talk. I was excited, because I finally felt I could give back, and that is a great feeling after feeling like all I was doing was taking from CASANA. That doesn’t mean the pain I felt during those years ever truly goes away. Much like Sharon when she teared up hearing my story, those emotions will forever be tattoed onto my soul. I showed a video of Ashlynn after she was first dx. Smiling, happy, and engaging, her speech was so poor but her energy was the same as it is today. I teared up watching it despite being well past those times, partly from remembering my sadness, and partly out of pride. I suspect now from observing Sharon and Kathy, another CASANA staff member with now grown kids who had apraxia, that pain will never be forgotten. I find peace in it now though.

Three years ago I knew not one other SLP mommy of Apraxia, and this year I have a picture with seven others. Ghandi said to be the change you want to see in the world. I put it out there, and it came back! I needed to meet others like me, and boy did I find them! Talking to them is like talking to an old friend. No background is required, they all just understand and “get” me.

SLP Apraxia Moms all in one place!

I was able to meet fellow walk coordinators and past bootcamp graduates. Sometimes, I would be sitting alone and hear a neighboring conversation. I would smile as people would relay their “it’s a small world” conversations and muse at coincidences. I would turn away and smile, wondering how people honestly believe in coincidences, because as you know, I believe a coincidence is nothing short of God telling you this is where you were meant to be.

Apraxia mom, Apraxia Advocate, and Apraxia Walk Coordinator Michelle who I have become friends with. I have a feeling Michelle is going to be part of a HUGE apraxia awareness movement this year.

Perhaps the icing on the cake for me, was sitting in the main ballroom during the closing ceremony. Ronda Rousey’s mom, AnnaMaria De Mars made a video specifically for this crowd and for this conference. It happened simply because I emailed and asked. You could have heard a pin drop while she was talking. People gasped when Sharon announced they had a video from her to us, they laughed when she told jokes, and they nodded as she talked.

In that moment, my apraxia mom friend leaned over and said, “you done good.” I smiled, because I finally feel as though I have paid it forward. After years of just taking because I was so desperate to help my daughter, I hope I have made a dent in helping others the way I feel I was helped.

Ms. Shelley Kelley, my kindred apraxia soul sister. No words required.

The closing speaker, Jennifer Keefe, who has a child with apraxia Danny Keefe who has been featured on numerous national news outlets said it best when she said,

“There is more good than there is bad in this world,” and Ronda’s mom in that video told us to think that “Maybe, it’s for the best.”

The theme this year of the conference was “Standing Strong, Facing Challenges.” It’s fitting because, without our trials and tribulations, we may never be as motivated to succeed and we may never be as motivated to defeat the odds, just like Ronda did, just like Jennifer Keefe’s son did, and just like Ashlynn will.

July 11, 2016
Apraxia National Conference: A candle in the window

It’s been three years since I last attended the national conference on apraxia. At that time, my daughter had been diagnosed with apraxia for just under a year, and I was still scared and sad about what the future held for my sweet Ashlynn.

I re-read my blog post I wrote after that conference, and it didn’t begin to capture all the emotions I had at that time, or what those three days actually meant to me.

It might have been because I was in the thick of it then, scared and sad on the inside, but all game face on the outside just trying to learn as much as I could to help Ashlynn.

I mentioned meeting Sharon Gretz, the founder of CASANA, and said merely that I felt an immediate kinship with her and we swapped stories. That is all true I suppose, but that meeting was soooo much more.

I remember she told people in the fb group to come and introduce yourselves if you were attending the conference. My husband went with me, and I remember telling him I felt like I was about to meet Julia Roberts. I was nervous, anxious, and sweating profusely. When I walked up to her and introduced myself, she was immediately kind and greeted me with a sincere smile. I wanted to act smart and professional, but as I started talking about Ashlynn I choked up and had tears in my eyes. Embarrassed I looked down and finished my story, and as I slowly looked back up, I saw she had tears in her eyes as well. For once in those lonely 9 months where I felt like the shittiest SLP on the planet for having a kid I couldn’t help talk, I felt I had met someone who understood and who was going to help me. Sharon’s not an SLP, but she had completed all the coursework to be one minus the clinicals, and she was the closest person I had to understanding how I felt and how to help without judgement.

That’s the real story. Maya Angelou said people will forget what you said, but they will never forget how you made them feel, and that’s true. I felt heard, I felt understood, and I felt hopeful.

I also mentioned learning about a bootcamp, and I non-chalantly talk about how I will apply.

Hahahaha

I’m laughing because the process of getting to bootcamp was anything but non-chalant and easy. It was like applying and trying to get into graduate school all over again!! Oh how naive I was!!

In a short three years since that conference, my life completely changed. I’m trying to find a word that fully describes it. Metamorphosis? Maybe that’s it. At that time I was a caterpillar inside my crysillus who couldn’t even imagine the new world I would see and the new possibilities that would be available once I had my wings.

CASANA gave me my wings. Is it no wonder then why I volunteer my time as a walk coordinator, try to spread awareness, and mention them wherever I go? How can you ever repay someone who literally pulled you out of a dark place, gave you hope, and changed your life and more importantly your CHILD’s life for the better?

I really and truly don’t know where Ashlynn would be right now without the knowledge I gained from CASANA. I know for sure she wouldn’t be talking as intelligibly as she is. No way. She’s severely impacted and without proper treatment, kids with apraxia do NOT just get better on their own.

She’s mostly resolved of her apraxia at this point, so now conference is about learning how to help her with all the residual problems, like reading, writing, and word finding just to name a few.

It’s also about learning new things and gaining new ideas to help my current clients.

It’s about going back and shaking the hand and hugging the people who made all of this possible and saying thank you for being my candle in a window on a cold, dark winter’s night (Thank you REO Speedwagon for those lyrics).

It’s about going from the only SLP on the planet who had a kid with this rare speech disorder to meeting in person all the others I have found just like me through social media.

Its about seeing all the other SLP’s nationwide who have decided to commit themselves to helping kids with CAS and being in awe and humbled by their commitment and love for our kids.

Most importantly though it’s about this girl right here. She was sad to see me go, and for the first time in her almost seven years, she told me,
“I will miss ya mommy.”

She also asked me if one day she can go with me to the conference. I smiled and told her yes, because I can’t think of anyone who deserves to go to the conference more than her. I hugged her and told her,

“One day baby. One day, and you’ll be the star of the show.”

July 7, 2016
She is a fighter, not of guts and glory, but one of understated grace.

Well, Ashlynn completed Kindergarten. It was pretty anti-climactic to be honest. For some reason, her school doesn’t believe in Kindergarten graduations. Okay, it’s not for “some reason,” it’s because the philosophy of the school is that graduations signify an end and Kindergarten is just a beginning.

I get it…kind of. Actually no, I don’t get it at all. If that were the case, we wouldn’t celebrate any graduation because technically every end starts a beginning. I don’t think that’s too philosophical. Whatever though.

It’s an odd thing. When I was younger, people flunked. I literally never hear that term anymore. Now that I’m in education, kids are “held back” or kids are “retained” or kids are “not retained” because they are in “special ed” and you don’t “retain” if a child is in “special ed.”

I received Ashlynn’s report card. When I was little, I LOVED that little manilla envelope. It was a little pocket that guaranteed me lots of praise from my parents….maybe even a trip to Dairy Queen.

I looked at it now in her backpack with dread. What would it possibly say? I know it didn’t say she flunked. She’s in special education and she won’t be retained. However, I know it didn’t say she was on grade level either. If that were the case, she wouldn’t be in special education.

Sigh

I debated not opening it. What does it matter?

I let it sit for awhile. I pulled it out, but didn’t open it. Instead I looked at the pages and pages of work sent home in her backpack that she had done from the Fall to the Spring. Progress. Amazing progress. Pages and pages of hard work rested under my fingers.

Math:

Really though, writing these numbers is not just math…it’s an occupational therapy success. Ashlynn has just as much difficulty learning to write because of motor planning difficulties, as she did to speak. Despite knowing how to write an S for awhile now because it’s in her name, she frequently writes a number 2. That’s just one example of many.

Everything else!

Drawing and writing:

Fall 2015

Spring 2016

As much as these pictures make me burst with pride…there is an underlining sadness….guardedness.

When I first started as an SLPA ( Speech/Language Pathologist Assistant), one of my supervising SLP’s showed me a book. The book described how children’s drawings correlate to IQ.

The above pictures show Ashlynn’s progression. Before I had Ashlynn, I didn’t realize picture drawing could be a measure of disordered motor planning and NOT IQ…as in her case. That last picture is after intense intervention.

This last graph looks impressive right? It IS impressive. However, it represents the “sight words” Ashlynn learned throughout the year. When she started, we were still working on identifying uppercase letters, so she made progress on that…but yeah…sight words are going to take a back seat. She is still abysmally behind where she should be….but if one considers where she has come, it is impressive.

Ashlynn wasn’t even talking three years ago, so of course, everything else is going to take some time. The point is though…the most important aspect is that….

Ashlynn ALWAYS grows. She ALWAYS progresses. She was born behind the eight ball. SIGNIFICANTLY behind the eight ball, but that girl doesn’t give a shit about analogies…or about pool for that matter. All she does is: WORK

She WORKS

Her report card wasn’t terrible. I really appreciated how throughout the report card they noted Ashlynn works hard and that she made great progress. So, that’s where we are at.

One day, when (if) Ashlynn ever reads all I have wrote, I hope she remembers this:

You are a fighter, but not one of guts and glory, but one of understated grace. Despite any challenge, you have never wavered from achieving your goals. I watch you day after day and see how badly you want to read, write, draw, dance and skip. I don’t know these things because you tell me with loud words and fists banging on the table. I know these things because I watch your tireless and humble pursuit of them.

When you have earned prizes for behavior, you choose books, cards, sticky notes and journals. You spend your time cutting and writing at your craft table, even though much of what you write is still not legible. It never deters you. It never distracts you from your goal.

At night, you always have cards, papers, or books in your hand. I come in before bed and place them on your nightstand so you have a place to sleep. You “read” your stories to your stuffed animals that you call “friends” while your finger tracks words you still can’t read.

While other children rejoice for the break that is summer, you ask daily when you will go back to school, to first grade, to be exact. You cheer when I announced we would do homework every morning before we go out and play, and you diligently trace and write your name and letters, making numerous errors despite years of OT now. I watch you smile and laugh away your mistakes, so forgiving of yourself as you smile and say “oops, I messed up. Let’s try that again.”

So Ashlynn, if you remember anything in this life, remember where you have come and where you are now. Remember that where you began, or even where you are at when you read this someday, is NO indication of where you will end up. Remember that though you are small and sweet, your heart beats the beat of a true fighter. You are courageous, strong, and brave in the most beautiful of ways. Humble, kind, and forgiving, even of yourself…..something most adults have yet to master.

I used to care about failing before I had you. I was a perfectionist and never wanted to take risks. You make me realize though, that if we don’t take risks, we never succeed either. We merely exist. My life is more amazing now that I take risks. I don’t fear failure because like you, I can always try again. Watching you go to battle everyday leaves me with sorry excuses if I don’t do the same.

Your report card means little to me. I’m not sure if I’m finally starting to accept the numbers or I’m just having a good night, but it didn’t ruin me like it used to. Maybe that’s because I see you and I know you will succeed, and Ashlynn, I will do everything in my power to help you.

June 9, 2016
Denver Walker Spotlight: Team Kellan

I Walk for apraxia for my son Kellan and for all of the other precious kiddos that battle apraxia alongside of Kellan. I want Kellan to be able to receive all of the crucial services and therapy he needs in order to be successful, and by walking for Apraxia, I can help other children in need receive those services too. I Walk because I want to help educate others and encourage understanding in the community and in our lives of what this disorder really is and what it really means for these children. I want to build a community for my son and for the other children that is open minded and understanding of differences.

I Walk because I want Kellan to see that he is not alone and that others are going through the same things that he deals with daily! I want him to know that he is loved and supported by his friends and family and that he is so special to us. We are so proud of his hard work.

I’m looking forward to meeting other families that walk in our shoes and know our struggles! It will be a fun day! Sometimes I struggle with anxiety in new situations or new play dates worrying about how it will go for my son and if people will accept our situation. I hope to make connections with others going through this. It’s so great to have a support system. I know Kellan would love to find friends that understand him in more ways than one. I’m also looking forward to having Kellan feel special and loved among all the support that day! He deserves to be celebrated. It is my experience that people don’t understand apraxia of speech and all the aspects of life that it affects. They don’t even know what it is. I had never heard of it before our diagnosis either.

If I could encourage others to be apart of this Walk, I would tell them that not only will it help build a community of love and acceptance, but it helps to bring such a feeling of belonging to these kiddos. By walking, you help to give all of these kiddos access to so many needed services. So please walk and be apart of this journey with us. Spread the love and the awareness! It’s all for these amazing kids… And to help give them a voice.

Find a walk and in your area here and register today!

Me with Kellan on Apraxia Awareness Day

June 8, 2016
Our kids need to meet others just like them.

This 4th Annual Apraxia Awareness day (it was trending, did you hear?), I organized a fundraiser at a local Chipotle to benefit the Walk for Childhood Apraxia of Speech. I have a HUGE goal of 30K. The walk last year made 16K, so basically I set this goal to double that.

I’m probably crazy, but I set that goal with good reason. That number ensures a visit for a free parent seminar given by the executive director of apraxia-kids.org (CASANA). I was the lucky recipient of her visit one year and it was amazing. The previous walk coordinators had amazing connections and one coordinator raised thousands of dollars just from his connections. I don’t have anywhere near those connections, so I’m trying to do more fundraising activities to help raise money and get us closer to our goal.

We had a really good turnout yesterday, with around 50-60 people gathering in South Denver. One mom even drove close to an hour and half to be there, because she wanted to meet other parents in her shoes going through the same thing. Social media has made it so we can connect with other parents and families, but of course, there is something different to have a face to face connection with a person who truly “gets” you.

Last night was interesting, because the kids with apraxia seemed to become instantaneous friends. You could honestly not help but notice them gravitate to each other and form an immediate kinship. They were holding hands and had created their own “walk for apraxia” by walking continuous circles around the tables. There was chatter, but there was more laughter, smiles, and pure happiness.

Ashlynn holding the 2016 Colorado Proclamation declaring May 14th Apraxia Awareness Day in Colorado

I was surprised to see a bossy side to my daughter Ashlynn. Most girls her age have a bossy side, but Ashlynn is always the follower at school. She has friends and is well-liked, but she is far from being a leader. You wouldn’t have known it last night. She was telling people to hold this hand and to walk this way. She was sweet and smiling of course, but still bossy. I told one young client of mine to tell her stop being so bossy. He looked at her and told her “no” through a smile, and she laughed and moved on, only to return again requesting him to follow her.

The mother of a second grade client came up to me and told me that her son listened attentively to all of the kids and had a look on his face that seemed to say “ohhhh, I get it.”

And that’s when it dawned on me. Here we all were, parents, networking with other parents. Happy to talk and chat to others going through similar experiences. An instant friendship is formed between the parents. Without saying anything, everyone seems to understand you so perfectly, and I realized…as I watched smiling face after smiling face, and small hand locking another small hand……that the KIDS had formed their instant connections too.

A famous actress Gage GoLightly shared a facebook post spreading apraxia awareness thanks to my friend and fellow apraxia advocate Michelle Leigh who discovered it on wikipedia and succeeded in bending her ear. Anyway, her post outlined how she grew up with apraxia and dyspraxia, but implored people:

If you know someone in school, or work who has apraxia, or dyspraxia- make today the day to reach out and just talk to them. Underneath everything in the end we are all just people. We all have our unique challenges and special qualities that make everyone incredible. Love and acceptance are what make this world beautiful. Reach out and be apart of the beauty.

I realized it’s important these kids meet other kids with apraxia. That they not only meet them, but get a chance to interact with them. We need it, why wouldn’t they? I love a quote by C.S. Lewis I reference frequently in my apraxia journey:

No one could deny the instant connection these children had. lt made me realize they need to get more opportunities to meet others who have the same disability. It was absolutely beautiful to witness. I wish I had taken more pictures. I probably only captured a third of the kids holding hands with each other.

I’m urging you all for so many different reasons to get out and support the walk, go to the walk, and participate in the fundraisers. It’s for so much more than raising money. If you don’t believe me, just look at the smile on your child’s face when they can also finally meet another and say without words, “me too.” As Gage said, “reach out and be part of the beauty.”

May 15, 2016