Have you communicated with someone today?
The reality for many of our kids is that they are living without a voice, and are not able to communicate their needs, wants, or feelings. Just imagine that for a second.
That’s why I’m so proud that our My Voice® Program is giving kids a tool to communicate 24/7 because communication is vital to daily life.
LET’S PAUSE & SMILE FOR BEN!
“I can already tell that it’s going to be a game changer for all of us.” That’s what Susan shared a couple months after her son, Ben received his new communication device (or talker)!
Susan then described a time when Ben used his talker to tell her, “I’m tired,” which she thought was odd at the time because he never expressed that feeling before, but he ended up sound asleep by 6:30pm and he slept THE WHOLE NIGHT.
Susan said, “He must have been tired! But I was so floored and touched and borderline emotional that he expressed that to me.”
LET’S ALSO SMILE FOR KEVIN!!
Kevin’s mom, LaVelle shared one very special moment that happened,
“I looked at Kevin and said, ‘I love you, buddy,’ and he took his talker, oriented himself towards me, and he used it to reply, ‘I love you more!’
Then, without skipping a beat, Kevin put down his talker and threw his arms around my neck and hugged me to demonstrate what he just said.”
Lavelle shared another experience, “Kevin indicated that he needed to go potty with sign language. I kind of dismissed it, but he made it very clear using his talker that he had to go potty now!…
I love that I can now communicate with my son, but more importantly, he can communicate with me!”
These kids are so special, and some just need a way to connect and let people connect with them, and My Voice is giving them that opportunity.
This is Giving Kids the Power to Choose and Express Themselves… Kids Like Benson.
4-year old Benson was recently fit / measured for his new adaptive bike AND adaptive stroller at the Tuscarora IU 11, and it was a beautiful day (see photos below).
Benson also has a communication device (or talker) from Variety that he received more than a year ago, and it has truly given him a voice.
When his mom, Hilary asked him how he felt riding the bike, he used his talker to exclaim, ”HAPPY!”
When it was time to get off the bike, his mom asked, ”How are you feeling?”, and Benson quickly replied via his talker, “Want more! Want more!”
So, we let him take another loop, but before he was finished, I got to hear Benson use his talker to CHOOSE BLUE for the color of his new bike!
We find it thrilling that Benson was able to communicate his feelings immediately in the moment because he had his talker (his voice)…
These talkers are truly opening up a whole new world for our kids and their families, and they’re giving children the power to choose for themselves without frustration.
That is a beautiful thing.
A MAJOR UPDATE ON MIA!
A few weeks ago, Mia’s mom, Anita shared this exciting update, “I wanted to check in and share some Mia progress, from a proud Mommy. In less than two years, Mia went from nonverbal to reading. We hope this gives you inspiration to keep doing what you’re doing because it all started with a device to give her language.”
DOES IT GET ANY BETTER?
Anita went even further to share a video of Mia showing off her reading skills, and we hope that you can take in how big this is for Mia and her family!
A BIG MOMENT FOR JAYLA!
Having a voice of her own is also a big deal for Jayla and her family. Before receiving her new communication device at the beginning of October, Jayla’s mom, Stephanie explained what it would mean, “This would make a huge impact on our family. We are a low income family with 4 kids, and my husband, who supports the household is a cancer patient currently in remission. We desperately need our little girl to have a voice to help her with the frustration and disappointment of not being understood. It would mean the world to us.”
Two weeks after Jayla received her new voice, Stephanie wrote to us on Facebook with the photos above and this update, “Thank you so much! Jayla is so excited to have her voice! She couldn’t wait to show her friends she can talk to them now!”
For Mia and Jayla, having a communication device is a really big deal. It gives them a voice and another tool in their toolbox to live life to the fullest.
A Pandemic Is Scary. Even Scarier Without A Voice.
The pandemic has caused a lot of changes, especially to the way Variety reaches eligible kids and distributes equipment. However, as soon as these changes needed to be implemented in March, we got to work and we haven’t stopped since, especially to provide kids with a voice.
I hope you can take a few moments to read some recent stories of how we are changing the lives of our kids and their families through THE GIFT OF COMMUNICATION!
Presley’s New Voice
Presley’s family told us what this device would mean, “A communication device will help Presley by aiding her to express her needs more clearly and helping our family to better understand her so that we may meet these needs to the best of our ability. We also feel that the device will help Presley learn new vocabulary and apply it in situations in which she might otherwise not be able to.”
John Immediately Asked For A Drink!
His SLP, Lucy shared, “John’s device was delivered today. John and his mom were both very excited! He told her ‘drink’- went to get a drink container from the fridge, and then said ‘please drink’ on the device. We were both so happy!! Above is a picture of him with his drink!”
A Device Allows Eli to be Heard & Understood
Eli’s SLP, Katie told us, “Elijah will be delighted to be able to communicate with his family. He gets very frustrated when trying to let us know what he needs. He is a very friendly person and loves to interact with us and I believe this device will enable him request what he wants without us having to narrow down what he is requesting.”
What do you think Aiden requested first with his device?
You’ll love what Aiden’s SLP, Jennifer shared with us, “After only a few minutes of me demonstrating with mom and giving her instructions, Aiden spontaneously approached the device and requested to “go” and when asked where… he requested “trampoline”. So of course, we went outside and he was happy as can be. On behalf of his family… thank you so much for the gift of voice for Aiden.”
THANK YOU for sharing in these special moments and being part of Variety’s team.
Dear Variety Friends,
Can you please take a moment to step into our kids’ shoes? What if you could not communicate? What would your life be like if you could not speak and say what you’re thinking or feeling…
For me personally, I’m amazed that I can still take the gift of speech and communication for granted, even though I am hearing their stories every day.
Watching these kids and their families be so excited has reminded me of the great gift this equipment is to them and how critical our mission is for their lives.
Honestly, I’m sometimes ashamed of myself that I take communication for granted.
As I’ve heard the response about the need and importance of a communication device, I keep asking myself, if this was my 4-year old granddaughter, what would I want people to do for her?
The answer to that is that I should be doing for our kids, whatever it is what I would want others to do for her.
I hope you’ll share in a few stories about the impact of a communication device for our kids and their families.
Dresden, age 4 from Allegheny County:
After receiving his NEW VOICE recently, Dresden’s mom, Brandi sent us an update:
“I included a video of Dresden putting together his first sentence on his own to tell us what he wanted for dinner. It was a pretty awesome experience for us. Thank you again for the opportunity to give him a chance to express himself.”
Click here to hear what Dresden requested for dinner (hint, it is a favorite for many kids… and adults). Don’t miss his giggle of joy at the end for being HEARD.
Isabella (Izzy), age 15 from Carbon County:
Pure excitement above as Isabella checks out her new device for the first time!
Isabella’s Speech Language Pathologist (SLP) from the Carbon Lehigh IU#21 sent us some awesome photos and a beautiful update explaining,
“We took some photos of Isabella getting her words last week!! She was so happy and confused at the same time. The smiles came when she found her name programmed in the device ‘My name is Isabella Lopez’, and then put the strap around her! Truly was an amazing moment!
Below is when she realizes that the device has HER WORDS on it!
A happy Izzy is pictured below with HER TEAM, including (left to right) her SLP Alix, her Social Worker Angelique, her teacher Donna, and her aide Heather.
The last few months, I’ve had the pleasure to speak with dozens of SLP’s and parents, and it’s been incredibly meaningful to hear their pure excitement about their kids receiving a communication device, especially during the pandemic.
Throughout the pandemic, Variety has provided more than 100 communication devices to kids with another 40 devices in the process of being presented! None of which would be possible without our incredible partners, and especially, the SLP’s.
I’m grateful for your support and for taking a few minutes to step in our kids’ shoes.
Take good care,
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
Dear Variety Friends,
100 KIDS HAVE RECEIVED THEIR NEW VOICES!
In the midst of the pandemic, Variety has provided 100 communication devices (so far) to kids who are nonverbal or have a communication disorder through our special delivery process!
Check out some of the highlights so far, and share in what a communication device means for the kids and their families.
Kozmo, age 5 from Dauphin County:
After delivering Kozmo’s new voice to him, Karen, his Speech Language Pathologist (SLP) from the Capital Area Intermediate Unit told us,
“He had been using 80-85 words on a device at school, so when he saw HIS words on his device, he started jumping up and down with joy, as dad showed it to him for the first time. You can’t see it, but he has a big smile underneath his mask.”
Karen also noted, “What if you couldn’t talk anywhere you went throughout your day and could only point to things? Communication is everything. Every parent wants to communicate with their child.”
After receiving the device, the family went straight home, where Kozmo started to use it right away, saying, “Mom, grandma, and cookie.”
Kozmo’s mom called the device “a God-send in the midst of the pandemic,” as she can move from a mind reader to truly knowing what her child likes. For example, she recently learned that Kozmo likes blueberries through device!
Emmanuel, age 6 from Westmoreland County:
Margaret, Emmanuel’s SLP from the Allegheny Intermediate Unit 3 was thrilled to deliver his new communication device to the family’s home!
Emmanuel’s family later wrote saying, “He loves his device! I am so excited to see how he will grow with it.” Margaret has already received multiple videos of him talking about all of his favorite animals using his new voice!
Levi, age 4 from Dauphin County:
His SLP Kate (from the Capital Area Intermediate Unit) explained how much the device meant to him in school, “Levi picked up using a communication device (with LAMP) in the classroom, and every day, he used the device to ask for a hug! He’s just SO excited to communicate.”
Before he received his device, Levi’s grandmother, Sharia told us, “I can’t wait to see his face light up when he uses it!”
Then, we received another message from Sharia after Levi got his new voice, “He was very excited to connect with something familiar and supportive from his physical school setting. ‘Go get your words’ and ‘Use your voice’ are becoming welcome phrases at home, and our family can’t adequately express in words our gratitude.”
Maci, age 8 from Dauphin County:
Maci also received her communication device during the pandemic. Her mom, Lindsey helped her make this incredible sign as a thanks. If the sign wasn’t enough to make us feel the love, Lindsey and Pam (Maci’s SLP from Upper Dauphin Area School District) wrote this beautiful poem,
To give the gift of a voice
The gift to be heard
The gift to say my choice
The power of a word
Now I don’t have to wait
I have the power to participate
A chance for others to see
The special person that is in me.
It’s exciting to say that a majority of our families receiving devices during the pandemic plan to have virtual therapy sessions and/or trainings with the child’s Speech Language Pathologist (SLP)!
Thank you for sharing in our joy and celebrating these extraordinary kids!
Take good care,
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
Dear Variety Friends:
As I take time to reflect, I am truly grateful for believing in our work to change the lives of kids with disabilities. With thanks, I want to send you a series of emails (starting with part 1 today) about the impact we’re having during the pandemic because I thought you would especially appreciate it.
In the midst of this pandemic, I have been inspired and had my life changed by a 17-year old named Corey, who is unstoppable!
This is one of the most incredible stories I have ever shared with you and amazing on many levels. I am sorry it is long… but I guarantee that you will be so grateful that you took in the whole story.
Corey receives therapy services and educational programming at Leg Up Farm in York County, Pa.
He had never ridden an adaptive bike until he rode one at Leg Up Farm.
Ever since, he wanted to have one at home, and he was scheduled to receive an adaptive bike and communication device at Leg Up Farm on April 3rd. Every day, he would ask his Speech Language Pathologist, Lu, “Is my bike there? Is my bike there?”
Corey’s mom, Michelle said that she and her husband (retired army) both love riding bikes, and were excited about the possibility of being able to ride with Corey as a family.
This opportunity to ride together has even more importance because Michelle is battling cancer and currently receiving chemotherapy. She wanted Corey to get the bike while she was healthy enough to ride with him.
April 3, 2020:
The presentation at Leg Up Farm was cancelled because of the pandemic.
Michelle was disappointed about having to wait for the bike, but also that Corey would not receive his communication device because, “Corey is partially verbal – he tries to say everything he reads and tries to communicate, but it is hard to understand him, which is where the device really helps him.”
April 9, 2020:
Michelle approached Lu, who called us, and with Corey’s Occupational Therapist, Nicole, and the leadership of Leg Up Farm, we created a way for Corey and other kids to receive communication devices and adaptive bikes in the middle of the pandemic!
May 9, 2020:
The Saturday before Mother’s Day, Corey received his new communication device thanks to a Special Delivery by Lu to his home.
May 15, 2020:
Corey received his adaptive bike at Leg Up Farm.
Michelle said, “Thanks to the bike and the device, Corey is making connections with neighbor kids he didn’t have before. This has meant the world to him. He just spent the last two hours playing with kids he has never played with before until now, and they live right around us.”
Tuesday, May 19, 2020:
Corey’s SLP Lu sent us an update, “I am just amazed at how he has blossomed in the last couple days with both the bike and the talker. He so desperately wants to have friends and that bike has given him a way to meet them. Instead of just watching them, now he is joining in. Variety didn’t just give him a bike, it opened up a whole new world for him. Variety has truly made a difference in his life!”
Check this out – here’s a video that Corey filmed himself from a Zoom meeting with Lu and his mom.
And to top it all off!
After only having his device for 10 days and his bike for 5 days, Lu said, “It really was wonderful to see him being so independent with his device. He knew exactly what he wanted to tell you and he wanted to do it completely by himself. Now that he’s seeing just how much he can do by himself, he is gonna be unstoppable!”
Does it honestly get much better than this – that in the midst of a pandemic, in partnership with the therapist and his parents, Corey is becoming empowered to live a dramatically different life.
COREY, THE UNSTOPPABLE… I love it!
Take good care,
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
Variety was fortunate to be a guest on the Pittsburgh Technology Council’s podcast, Tech Vibe Radio, hosted by PTC’s Audrey Russo and Jonathan Kersting, who help make technology relatable to us all.
The two masterfully highlight what our My Voice® Program is all about and the impact that it is having for kids and families, so please don’t miss listening to Health Care Reinvented: My Voice Program – start listening and get inspired!
Not sure what to expect from the episode? Here’s how PTC describes it:
We couldn’t be more excited to release the next episode of Health Care Reinvented with Allegheny Health Network and Highmark Blue Cross Blue Shield.
This episode overviews the My Voice® Program with Charlie LaVallee of Variety detailing how cutting-edge technology is giving children who cannot speak a voice! It’s hard to imagine a child that is hungry and can’t ask food or a child that is hurting and cannot ask for help.
Listen to how the My Voice Program is putting powerful communications tools into children’s hands and giving them the ability to speak. Charlie has several heart-felt examples of the program making a life-altering difference for the children and their families.
A massive thanks to the Pittsburgh Technology Council (especially Audrey and Jonathan) for supporting and believing in our work, as well as Highmark and the Allegheny Health Network, who helped to make this opportunity possible.
Tree of Life Rabbi Myers was on GMA this past Friday morning, and he made a terrific point when he said that we need “PHYSICAL distance from others at this time but SOCIAL connection.” Such a good point that we need social connected-ness. We are grateful for our connection and all that we have done and are doing for kids with disabilities.
At this challenging time, we wanted to send you a small reminder about the power of a smile.
Issac makes me smile because I know that he has a communication device to not only help him find freedom in communication, but, as his mom describes below, it will help to lessen his own daily frustration.
Issac’s mom, Morgan describes why this device is needed, “Issac’s functional communication has always been a struggle, and it is clearly a source of frustration for him when he tries to communicate but can’t find the words he needs. Since he started speech therapy, Issac has continued to develop a vocabulary of useful words for requesting objects and observations. With this equipment, we can continue to support Issac as his vocabulary grows, and it is our hope this will help decrease frustration.”
Let’s strive to keep our social connection and find every moment to SMILE!
When 4-year old Nik received his communication device, he was BEAUTIFULLY surrounded by his parents, siblings, grandparents, and even his aunt and uncle.
All of whom came to the presentation to celebrate this life-changing day and to show their commitment to helping him every step of the way.
Nik’s mom, Nikol gave us perspective to why she was originally hesitant to try a communication device, and the impact it has since had on her son,
“Watching your child struggle with something is one of the hardest things. Especially when that struggle is with communication.
We as Nikolas’s parents… growing up… we would never think twice about being able to verbally communicate. Something, we feel we took for granted.
We have tried to be so proactive with helping him communicate. When Nik’s speech therapist asked us about utilizing an iPad in class to help Nikolas, we had a concern that it would hurt more so than help Nik. ‘Would he use the iPad and not want to try to speak?’ We were worried, but after support from his teacher and speech therapist, we decided to try it.
To our surprise Nik seemed to come home, almost daily, and it felt like he was able to verbally communicate more that day or week than the last. Janet asked if we were interested in having one at home and without hesitation we happily said ‘YES!’