Many parents of children with communication disorders such as apraxia report feelings of anxiety, fear and trepidation during back to school. Worries about their child being understood or being bullied run rampant. Furthermore, parents feel powerless. This podcast explores those feelings more in-depth and provides resources and suggestions to help parents and their children during this transition.
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Letter to the teacher
Today I am so excited to have Jordan LeVan with us to contribute and tell his story for my growing up with apraxia page! Jordan is a 22-year-old in college studying psychology. I’ve gotten to know him through the magic of social media, where he shares stories about his life and posts informational and inspiring messages about living with verbal Apraxia. You should check him out on Facebook, Instagram, and YouTube!
Hi Jordan! Can you start by telling us a little bit about yourself?
Hello! I’m Jordan, and I’m 22 years old. I was diagnosed with Verbal Apraxia at five years old, and since then, I have been fighting for my voice. I advocate for those with Apraxia and speech issues, and I run a page called “Fighting for my Voice: My life with Verbal Apraxia.” I’m currently a college student at Guilford College, and I am majoring in Psychology. I enjoy writing, photography, and making people laugh and smile. I enjoy using creative outlets.
When were you first able to speak?
I was considered “nonverbal” until the age of 5, and at that age, I began saying full words more. However, speaking was still extremely difficult for me. I remember at the age of eight stomping my foot into the ground, just trying to get out a single word. I was able to speak to strangers and be understood by the age of 12.
What was the hardest thing about growing up with Apraxia?
Nobody knew what it was. The lack of education was so real. I had no resources or outlets besides speech therapy. None of my speech therapists during this time had ever worked with a kid with Apraxia; this was in 2002. I felt like I didn’t understand my condition at that age. It was so confusing, frustrating, and overwhelming all at the same time. I also didn’t think anybody else had Apraxia, due to the lack of awareness during this time; this was difficult for me because I never had anybody I could relate to.
What was your school experience like? Can you tell us how it affected you not only academically but socially?
My school experience was rough, and I would be lying if I put it any other way. I couldn’t read nor write until I was in the third grade, and teachers weren’t understanding of this. I got unfair treatment from not only teachers but also speech therapists. My kindergarten speech therapist would leave me outside her classroom because she didn’t know how to treat a kid with a diagnosis of Apraxia. When teachers would come up and ask me who I was, I couldn’t tell them my name. The social aspect of not being able to say to others your name brought on feelings of panic from a young age. The social component of me connecting with my peers was challenging. I got bullied from a young age. I had to be pulled out of public school in the sixth grade; this was because the bullying was too extreme.
How has Apraxia affected your life? What are some residual effects you have?
Apraxia affected my life so early that I wouldn’t know a life without it. Some residual effects that I have are my voice volume level. I often speak quietly, and I sometimes don’t even realize it. Until others are like “Speak louder.” Those cues help me understand. It also affects my tone of voice. I often sound monotone if I’m not putting work into it. I also struggle with getting out words fully and fluency. I’m a constant work in progress.
Most parents are very worried about their child’s future when they are diagnosed with Apraxia. What advice do you have for them?
Be your child’s biggest advocate. You’re going to have to fight hard to get your child proper services. However, it is so worth it. Normalize conversations about Apraxia. Help them be open with others about their diagnosis. From a young age, help them accept this is a part of their life, and it will make them stronger. Along the way, teach them how to advocate for themselves. I’m always advocating for myself, and I know my rights. Just because I am not neurotypical, doesn’t make me any less of a person. Let them know their value and their rights.
You are truly an inspiration, and I’m so grateful for you speaking out! Do you have any final thoughts?
My life with Verbal Apraxia hasn’t been easy as you can tell. However, I wouldn’t be the person I am today if I didn’t have it. I’m not sure if I would trade it or not, because it’s made me a compassionate and understanding person. It’s showed me a different perspective on life. I don’t believe I went through my struggles for nothing. I believe I went through my struggles to help others. If I can help others, me struggling to get out words is worth it. I want other people with Apraxia to know that you were built for this. The fact you wake up everyday, and decide to push forward while your brain is trying to hold you back is brave. Despite my struggles, I refuse to go down without a fight.
So well said Jordan! Refuse to go down without a fight. Thank you so much for guest blogging today! Keep spreading your message because you are helping more people than you even know.
Growing up with apraixa is part of an ongoing series that aims to celebrate neurodiversity and highlight those who have grown up with Childhood Apraxia of Speech and related struggles. If you are interested in being featured, send an email to lauraslpmommy@gmail.com
Intro and background from Laura Baskall Smith, a Speech/language Pathologist specializing in Childhood Apraxia of Speech.
There will be amazing times, not so amazing times, and some terrible times. Every human experiences this because it is the definition of what it is to live. During those down times in life, whatever they may be; the one thing worse than the situation is believing you’re alone in your situation.
Seven years ago Ashlynn my daughter was diagnosed with apraxia, a rare but serious neurological speech disorder and my world came crashing down. I was quick to find an online support group, and though I related with everyone’s parental feelings, no parent could understand my added guilt of being a speech/language pathologist that couldn’t help her child speak. I was not alone, but still felt alone. That was until, I met another SLP Mommy of Apraxia Kim and we formed an online Facebook group called SLP Moms of Apraxia. Through this online group I connected not only with Kim, but with so many other moms nationwide going through the same struggle. I remember being awe struck. Once upon a time I truly believed I was the only SLP on the planet who had a kid with a rare speech disorder called apraxia. SLP’s are not necessarily a prolific profession and apraxia is seemingly rare. We formed this online group and suddenly we started to find our tribe. I know there are those who dismiss social media. However, it was truly a “bridge” that connected me in Colorado to other SLP Moms of Apraxia around the world.
All I knew was this woman named Sharon who moderated the online parent group and lived in Pittsburgh, 1,450 miles away. She had come to Denver (my home town) and encouraged people to come find her at the national conference. I remember I took my husband to a meet and greet event. An event I would have never considered had I not been speaking to her via Facebook. We didn’t have money at the time but the personal connection pulled me in. I stopped dead in my tracks as we looked at the kind and unassuming woman greeting people in her Birkenstocks. I told my husband this was like meeting Julia Roberts! I remember his puzzled face. No, Sharon wasn’t famous in celebrity magazines, but thanks to the the modern development of social media she had pulled me and countless others out of the rabbit hole of grief. Unless you have experienced it, it’s impossible to explain our instant connection even though we only knew each other through Facebook group. Seven years later I would fly to Pittsburgh and meet her in her hometown where I would have my family in tow and she would have Luke. We would share a pretzel and cheese at Penn Brewery listening to local bands. This night I felt I had known Sharon my entire life.
Back when I attended my first conference in 2013, there were no “bloggers” per se. There was a strong online community but blogging was relatively new. Fast forward to 2019 and I am standing next to prominent bloggers and social media influencers in the apraxia community. The minute I meet these people I again feel that immediate connection. They are my apraxia online buddies, but they are more than that…they are MY TRIBE. Aly from California (Girl with a Funny Accent) and Mikey (Mikey’s Wish: Verbal Dyspraxia Awareness) from the United Kingdom are individuals with apraxia, and Michelle (Apraxia Momma Bear) from Florida and me (SLP Mommy of Apraxia) from Colorado all have a social media presence. I can’t describe it but seeing them in person is just the icing on a solid foundation of cake that has already been made.
I brought Ashlynn because she was invited to speak at the young people/adult panel. She would be the youngest person ever to speak at the conference. I am very open with Ashlynn about what I post on my facebook SLP Mommy of Apraxia page. I have shown her posts from Mikey and Aly to help build her up and show her she’s not alone. She had never met Mikey or Aly in person until this conference. In EVERY situation where she saw Mikey she let out a squeal of joy “MIKEY!!!” She had never met Mikey. In fact, Mikey lives 3,625 miles away in the UK. She thought she had though because she followed him through social media.
During another instance, I was sitting at the blogger table with Aly when I asked Ashlynn to practice her speech. Ashlynn immediately started railing against me when Aly stepped up and said,
“Ashlynn! Can I help you practice? Will you read it to me?”
Ashlynn smiled and read the entire speech to Aly. Aly looked apologetic and explained children don’t really want to practice with their parents. My heart smiled and was filled with gratitude. I thought it was just me who connected with Aly, but I realized Ashlynn did as well!
Two SLP Moms of Apraxia I knew were going to attend the conference and have their children in tow. I knew this of course through the social media network. I was able to invite Nicole from Home Educating Apraxia and Erika from PintSizedFoodie and their kids to our hotel for a swimming play-date. A play-date that would have never even been remotely conceptualized without social media. The connection between our kids was instant!
This year Ashlynn was going to speak in front of 500 people alongside Jayden LaVecchia, a 10 year old who had endured a lengthy and difficult struggle. Thanks to the social media, Ashlynn and Jayden were able to send each other video messages and “meet” each other through social media. The in person meeting was electric. You would have never known they live 1,896 miles apart. Through the power of social media, it’s like they had known each other their entire lives!
I realized at this conference, our kids need their tribe as much as us parents do! Ashlynn was fully immersed with her people and absolutely thrived. Her penpal Maya and her mom Elisa who has a social media page called Sweatpants and Speech Therapy talked about how they want to create a camp for kids with apraxia! This would be a place for all kids with apraxia to come and be together. In our struggle as parents, we forget our children need their people too!! Though apraxia is rare, social media is a powerful tool to connect! Ashlynn knows her apraxia tribe locally because I coordinate the walk, but also nationally and even internationally because of social media!
Early in my journey I also met someone via social media living in Oklahoma. Shelley has been with me since my early days and we have followed each other and our kids through Facebook. Seeing Shelley feels as familiar as home. We always pick up right where we’ve left off. So funny to me that I would have never met her without Ashlynn having apraxia or without social media. Seven years ago and since our joke when we were crying on each others’ digital shoulders were emoji’s showing a jet airplane and a glass of wine. Through the years we’ve found ways to make those emoji’s come to life.
Then there was Scott from Apraxia Kids of Arkansas and Apraxia Mama Meghan from Instagram. Two passionate and fierce apraxia advocates! Scott lives in Arkansas and Meghan lives in the Bronx. I got to know these two well from social media. Though their communities are different, both of them have a heart and love I can’t begin to describe. I learn about their communities through social media and we instantly connect because we know each others’ story.
Professionals use social media as a way of extending their reach. I was able to have dinner with Cari Ebert, who has a strong Facebook and Instagram presence. It was amazing to talk to her and get to know her more. She also was the SWEETEST and made Ashlynn a sensory bag full of goodies and brought her some stickers. It was so touching that a child she had never met she thought about thanks to social media connections. Dr. Tricia McCabe from Australia has a strong Twitter presence, and meeting and chatting with her made it all come to life! Edited to add: A couple weeks later an Aussie SLP mom joined my SLP Moms of Apaxia group. When I asked her how she found our group, she said Tricia McCabe had told her about it after talking to Cari Ebert and me. Isn’t that funny? 8,000 miles away an SLP Mom whose child was dx with apraxia found a group online and never had to feel alone thanks to social media.
It was fun seeing Amy Graham of Graham Speech Therapy who has a strong Instagram presence at the conference. She lives in my state but I only really got to know her and her therapy practices through her numerous informative videos.
I was finally able to meet Lynn Carahaly who developed the Speech EZ program for apraxia. I had chatted with her via my Facebook page on numerous occasions so I felt like I already knew her! It was great though to actually meet her in person.
Finally, thanks to social media, people found me that I did not yet know! Two moms from Apraxia Kids Brazil were forging a path there for kids with apraxia came and introduced themselves. Living 4000 miles away they know everyone through…social media of course. We took a picture on someone’s phone but no one can find it so I’m posting them with Michelle of Apraxia Momma Bear! They gave me a shirt too and I wear it with pride!
Though there were numerous, almost too many to count touching moments, my favorite was meeting Naomi. Naomi stopped me and Ashlynn and introduced herself. She told Ashlynn she was famous and she follows her on social media. Afterward Ashlynn told me, “Everyone knows me here!” with a big smile. I looked up Naomi on Instagram and found she lives in California and has over 10,000 followers! SHE was the famous one!
After Ashlynn and Jayden spoke, she caught them in the hallway and bent down on their level. She told them how brave they were and to always remember this moment. To be honest I don’t know what else she said because I had tears in my eyes and her sincerity and love flowed out of her onto them.
The theme of the conference was building bridges. I couldn’t help but think of all the way social media platforms have been a bridge connecting us all together. These invisible yet tangible bridges allowing us to connect and form relationships before we even meet. Personal and professional, national and international, old member and new members, social media connects us all.
And it all started, when Sharon Gretz found SLP David Hammer in Pittsburgh. Dave gave her son Luke a voice, and she decided she needed a way to help others the way she herself had been helped. She started a list serve. True to her city, the city of bridges; she extended the bridge of knowledge online to those who were ready to hear it. That bridge turned into social media and the apraxia network was born.
I want to continue the legacy of building bridges that Sharon started in her city of Pittsburgh. I don’t want any child with apraxia to not get the help they need regardless of their circumstances. I want to always ask myself if I’m building bridges in my life and I want to ask you if you are too?
On my last day of the conference my Uber Driver was a cool cat. In his Pittsburgh accent he told me Pittsburgh had more bridges than any other city. He then asked me,
“So, what brings you to the Buuurgh?”
I smiled. Bridges brought me here, just not the ones to which he was referring.
Lying on the couch after work, mindlessly scrolling social media when my sweet nine year old daughter says, “Will you push me on the swing, Mama?”
I’m a pediatric speech/language pathologist and my job is AMAZING, but it’s also very demanding and zaps me mentally and physically by the end of the day. An introvert at heart, I need alone time to recharge and refuel. Needless to say, pushing her on the swing was not on my agenda for the night. However, as I looked into her bright eyes sparkling with hope, I put my phone down and asked her to give me five minutes. Enthusiastically she ran to the clock, figured out how long five minutes would be, and then bounded out the door.
There was a time my daughter with apraxia couldn’t say “Mama” and had to go to speech therapy to learn it. Once she had words, she had to learn how to put them together to make a phrase because she also has a developmental language disorder. There was a time she had to go to speech therapy to learn how to add the /s/ to /s/ blend words, words in which an /s/ is next to another consonant as in “swing.” There was a time she had to learn how to use verb tenses correctly and once she understood and used verb tenses correctly, there was a time she had to then practice “interrogative reversals” in order to ask questions correctly. Those days seemed so long. The struggle seemed so long. Yet here she stood, effortlessly doing all those things as though she never spent hours in therapy offices learning how to do them. Here she stood asking to be pushed on the swing, something most kids were doing while she was working hard to find her voice.
Though my daughter can pump her legs herself now and swing, there was a time she had to spend hours in occupational therapy and physical therapy before her core strength could even support the act of sitting up on and pumping a swing. Then, once she was strong enough, she needed more therapy to get the coordination of the movements down. As she got taller, she then needed to learn how to change the motor plan and move her ankles out to the side so her feet wouldn’t hit the ground. Yet, here she stood, able to do all of these things now but still asking me to push her. She’s nine years old. We are getting close to her never asking me this question again and the gravity of that sunk in. Would this be the last time she asked me to push her? My mind flashed back to her beautiful smile when she is swinging. She literally came out of the womb and hogged the swing in the nursery. The nurses all laughed and mused at the baby who was only happy in the swing. It never stopped there. I have numerous pictures, too many to count, of her swinging in various ages of her life.
I thought about how swings go up and down and up and down and how Ashlynn smiles and giggles through it all. I thought about how swings are a lot like life in that way. Ashlynn has a lot of challenges. She has a genetic mutation called BCL11A that has caused numerous disabilities and her life is anything but easy street. If anything, it’s more like the swing in that there are ups and downs, successes and challenges. Through it all though, she smiles.
I thought about all the areas I’ve had to push her. Sometimes I wonder if I pushed too hard. Did I let her be a kid enough? Will she only remember speech therapy, occupational therapy, physical therapy, and tutoring? Nights struggling through homework? Nights struggling through activities of daily living that are so hard for her, such as brushing her teeth or getting dressed, because I know she needs to learn to do them for herself?
So on this cool summer evening in June, tired from work and craving alone time, I got up and pushed her for an hour that night in the backyard. We laughed and giggled and made up games. I reveled in the fact my daughter still wanted me to push her, and I prayed to find a balance in the future of pushing her not a breaking point, but further and further to her potential. Oh, and making sure we find time to keep smiling and laughing along the way.
Laura Smith is a mother to two beautiful children, one of which was diagnosed with a rare genetic mutation that caused a multitude of learning challenges. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com
I was a member of the Apraxia Kids facebook group online one day in 2013 and a movement had taken place. This was going to the be the first year an Apraxia Awareness Day was officially recognized on May 14th! This day is also in the same month as the American Speech Language Hearing Association‘s campaign for the month of May being Better Hearing and Speech Month.
My daughter Ashlynn was diagnosed with apraxia in September of 2012, and I had been living in a place of fear, panic, and worry ever since. Having an event like the first ever Apraxia Awareness Day materialize almost 8 months later seemed like a blessing. It pulled me out of the sorrow in which I had been living and energized me. People were making these social media posters that described their child aside from their apraxia and it was inspiring. I wrote my post that night with the poster I had made for her.
It’s poorly done, and hard to read…but to me, this meant EVERYTHING. It says
This is the face of APRAXIA, but apraxia does not define her. She is a smart, beautiful, loving, playful, kind, sweet, fun, joyful, Daughter and BEST Big Sister.
Numerous others made a similar poster. The day was so inspiring and empowering, it lifted me out of the fog.
This one was clearer. You could read it. I made it and printed it out for her class to take home. Five years ago, I realized Ashlynn was my hero and I knew she was going to be a hero to so many others.
On this day, I was an SLP at her school and the only other kid with apraxia in the building was a twice exceptional student with apraxia in 5th grade. All together we created a presentation in which the 5th grade boy was adamant we make it clear you can’t catch it like a cold. I thought it was rather silly until almost all the kids raised their hands when he asked Ashlynn’s second grade class who there thought they could catch it like cold. I was in shock. It was eye opening for sure and reminded me why I need to continue to spread awareness!
My daughter Ashlynn beat apraxia. I wish that was all she had to beat. She went on to get a diagnosis of dysarthria, cerebral palsy, dyslexia, and then an umbrella genetic mutation diagnosis of BCL11A that is the explanation for all of her disabilities including apraxia. Despite this though, she just tested ON GRADE LEVEL for reading now as a third grader after making almost 2 years worth of growth in ONE year. She beat apraxia, and I know she will continue to beat everything else that is thrown at her. With apraxia in our past, it’s a wonder why I haven’t moved on. After all, I could be the: dypraxia advocate, dyslexia advocate, ADHD advocate, SPD advocate, dysarthria advocate, language disorder advocate, or rare genetic chromosome disorder advocate. Why do I still remain and apraxia advocate?
The answer is simple. I was graced with “ripples.” If you are wondering what ripples means, it refers to the actions of ONE or TWO people that changed the trajectory of MY life. Those people were the founder of Apraxia Kids Sharon Gretz, and international apraxia expert Ruth Stoeckel.
A phrase caught on called “It’s all about the ripples” and shows little sign of stopping. Many times, when you are on the front line of apraxia awareness you feel like you are spinning your wheels. An apraxia mama I know called it “feeling like Nemo in the Pacific Ocean.” However, that same mom, who is from California, managed to get Apraxia Awareness Day officially recognized by the state of California, something that has not been done in the SEVEN years apraxia awareness day has been officially recognized!!! That Nemo from Cali proves that ONE person’s “ripple” can make a state wide, SIGNIFICANT impact.
Another young woman Reagan Crabtree with apraxia from Iowa is great at social media and has a lot of anchors and journalists on her feed. She has been interviewed multiple times in the news and even appeared in the Rose Bowl. She told me connections mean something, and boy she is right! Her “ripple” reaches the news media and that is a HUGE ripple from ONE girl with apraxia.
I could go on with story after story, but as I look on my social media feed I see a movement growing bigger than before. The ripples are growing further! So many more people are spreading apraxia awareness and because of that more kids are going to get the help they need! I feel the movement! I feel the revival!
Though it can seem we alone cannot possibly change anything, together we have the ability to change the world! Even the smallest stone thrown into the pond can create a ripple, but when those rocks are multiplied, the impact is immeasurable!
Post about Apraxia and Apraxia Awareness tomorrow! Hashtag it #apraxia and #apraxiaawareness and #apraxiaawereness day. Even if you feel like you only educated ONE more person…pat yourself on the back and realize you created a ripple!
