The metaphorical bridge of the apraxia conference
Life is full of ups and downs, wins and losses.
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.
Humans are social beings. The most important things we can do for ourselves on any journey in life is to find others who are going through the same experience.
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.
When I attended my first conference I was nervous and didn’t know anyone.
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.
Music, food, and brews in PA
During this 2019 Conference I was also able to meet up with my social media blogger tribe!
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.
There was something striking to me though about this conference that I hadn’t realized in years past.
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!
Finally, there were the pinnacle moments.
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!
Watching the keynote of over 500 people
Find your tribe and love them hard.
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!
New to the tribe, longtime member of the tribe, it all came together through 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.
Professional connections
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.
New faces!
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.
