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 and her dad pictured above.

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!

John and his mom pictured above.

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 pictured above with his device!

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?

Aiden pictured above.

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.

Mikey’s New Voice: “It made my Momma heart BURST!”

Mikey is all smiles pictured above.

5-year old Mikey received his new communication device on June 9, 2020 through Variety’s My Voice® Program!

On June 18th, Mikey’s mom, Laura wrote and told us, Getting familiar with Mikey’s new device this morning! I am letting him choose the words then we have a conversation about them. The more we do this, the more he will become familiar with it and our conversations will start to take shape! This is beyond exciting for us.

We now have a way to help him express himself. This is the greatest gift. We are so thankful for his speech therapist who took the time to program this device for him and came to the house to help us get a good start. We are also so thankful for Variety – the Children’s Charity of Pittsburgh for working with us to get him this! We are just overwhelmed with gratitude.”

Mikey again with his communication device.

Then, we got a second update on July 14th, and Laura said, We are so thankful for all of you! We are still learning a lot, but he found his favorite tv show all by himself the other day and screamed with delight! He was able to ask us for the exact show he wanted to watch. It was the best feeling to see him so elated. It made my mama heart burst.”

Can you feel her joy in those words?

In the midst of a pandemic, Variety continues to make a difference for kids with disabilities, and because of our grant through the PA Department of Community and Economic Development, Mikey now has a voice.

Making an Impact in the Midst of a Pandemic: PART 1

Dear Variety Friends:

I trust you and your family are all safe and well during this challenging time.

As I take time to reflect, I am truly grateful for all your support over the years and 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 is pictured above with his parents.

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.

Corey is pictured holding his new device, which came as a special delivery at his home!

May 15, 2020:
Corey received his adaptive bike at Leg Up Farm.

Corey is taking his new bike for a ride with his dad beside him!

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

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 connectedness. 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 and his parents are all smiles with his new device!

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.”

Issac checking out his new voice!

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 is pictured above surrounded by his family, as he receives his new communication device!

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

Hazel is all smiles above with her mom!

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 pictured above with his mom and new equipment!

“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.