Tag: Communication
A Voice Means Everything In A Pandemic
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.
PART 3: “Making an Impact in the Midst of a Pandemic”
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,
Charlie
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
PART 2: “Making an Impact in the Midst of a Pandemic”
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.
For Maci
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,
Charlie
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
PART 1: Making an Impact in the Midst of a Pandemic
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.
Critical background:
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,
Charlie
Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity
CELEBRATING 10 & Why It’s Important
TODAY AT 4:00 PM, we celebrate Joke #10 in our JOKES WITH JACOB smile series, and we feel it’s something worth celebrating, together! You can keep up with all of Jacob’s jokes on Facebook or YouTube.
For Jacob, and so many other kids with disabilities, this time of “stay at home” has been especially hard, since it’s completely changed his daily activities. It’s changed his life completely.
We cannot forget about our kids and their challenges, especially now. Our kids just want the chance to be part of something.
JOKES WITH JACOB has been an enormous boost for Jacob, as it gives him purpose and helps him to give back to others through laughter. It’s also inspiring others to think of how they can give back. Excitingly, Jacob’s first 9 jokes have reached more than 34,000 people!
We hope that you’ll continue to follow JOKES WITH JACOB, and help make sure that our kids are not forgotten (BUT CELEBRATED) because they have A LOT of joy and beauty to give to us all.
Health Care Reinvented – My Voice Program
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.
Checking in with A SMILE!
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!
“Watching Your Child Struggle is One of the Hardest Things.”
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!’
To have Nik come home and not struggle with verbally communicating his wants as much, whether picking up more words or utilizing the iPad, would be such a blessing.”
After receiving his device, Nikol sent us this 30-second video of him using it to tell her what he wanted:
Thank you for believing in Variety’s work and helping us, help more kids.
A 1-Minute Update… Try Not to Smile!
MEET HAZEL
3-year old Hazel was all smiles, as she checked out her new communication device (and ate a tangerine). She received the device last Tuesday through Variety’s My Voice® Program, and we are still beaming with joy for her and her entire family.
Her mom, Mary told us,
“Hazel wants to communicate. She tries so hard to tell us what she wants and what she’s thinking, but she runs into the limitation of her ability very quickly. While Hazel communicates with sign language, she only has about five spoken words, and it’s very difficult for her to form words.
A device like this would be life-changing for us, as it would give her another way to speak to us, and it would give her a consistent aid in hearing spoken words to help her build her own vocal abilities.”
This communication device is a tool for kids like Hazel to find their voice, and be able to express their wants, needs, and feelings to those around them. I don’t know about you, but I would love to hear what Hazel has to say now with her device!
The Impact Doubled for Brayden & Brooke!
On Monday, January 27th, Variety presented adaptive equipment in Erie, and what a day it was!
6-year old Brayden received a communication device AND a bike, and you have to read what his mom shared…
“Brayden is nonverbal, so he doesn’t speak, so this device is going to really help him. And it’s just, it gets tough because I’m a single mom at home, I have limited income and I have another child who’s high functioning autistic. She speaks and everything, but she’s just having some trouble with emotions and dealing with others.
And so we just take one day at a time, but he’s just – all of these kids with special needs are such blessings, but it’s hard, it’s really hard sometimes. And you just want to make it as normal for them as possible, because they have enough challenges, so you just want to give them love and help them communicate as best they can. So I’m very thankful.”
Earlier that day, Variety held a Press Conference with City of Erie Mayor Joseph Schember, Saint Vincent Hospital CEO Dr. Christopher Clark, representatives from Intermediate Unit 5, Barber National Institute, and others from the Northwestern corner of Pa. to make a big push to identify every eligible child who could benefit from their own communication device.