Local organization helps children nationwide find their voice.
After their son Christopher was diagnosed with severe childhood speech apraxia—when the brain knows what it wants to say but the mouth can’t form the words—Jennifer Woloszyn and her husband immediately started on a path of early intervention. At just 18 months old, Christopher entered developmental and occupational therapy, and then moved on to speech therapy at 26 months. At the time, he was only able to speak three words. With one-hour sessions over the next 10 months, Christopher added another three to five words to his vocabulary.
Throughout that same time period, he was evaluated multiple times for his progress and placed in the fifth percentile for his receptive language, which led to his acceptance into the Barclay Early Childhood School for speech therapy twice a week.
However, the family needed a way to cover the gap between early intervention, which ends at age 3, and the time school started in September. The Woloszyns worried that time without therapy would cause Christopher to regress.
After finding Marlton-based Speak to Me Kids and deciding it would be ideal for them to cover the gap, the Woloszyns’ research revealed that health insurance does not cover speech therapy between the ages of 3 and 21. “After days of research and phone conferences with the insurance company, they were not willing to make an exception and approve any financial assistance,” says Woloszyn, of Cherry Hill. “These are the most crucial years for a child’s development and we were devastated.”
But they didn’t give up.
“We researched grants and organizations for our specific situation and came across Small Steps in Speech,” she says. “It amazed me that this organization cared so much about giving little ones their voices. We sent in an application and were approved for a grant that would cover 30 sessions of speech therapy. After paying $70 twice a week, this was finally something in our favor.”
Honoring a hero
Small Steps in Speech has an equally inspiring story.
Take Amanda Charney, the executive director of the Collingswood-based organization. As a school-based speech and language pathologist specializing in early childhood development and developmental disorders within the realm of speech and language, she has seen families struggle time and time again to pay out of pocket for private speech therapy for their children. She and her fiancé, Staff Sgt. Marc Small, would often talk about their future and shared a hope of Charney one day opening her own private practice to help these families.
“Marc had already come up with the name ‘Small Steps in Speech’ to symbolize my soon-to-be last name as well as the small steps children take to build their communication skills,” Charney says.
A decorated service member, Small joined the Army in 2004 as a Special Forces Trainee and became a Green Beret in 2007. He was deployed to Afghanistan on his first tour in January 2009 as a team medical sergeant.
“Marc was impacted by the tragedy of Sept. 11 and wanted to serve his country,” says Charney. “He went up the ranks quickly and his deployment was only going to be six months. As the team medic he treated up to 50 patients a day, many of them Afghan children. After deployment, his plan was to come home and go to medical school. He always wanted to help people somehow.”
Sadly, in February 2009, Small died while serving in Afghanistan.
The day she found out about Small’s passing Charney was beyond devastated. “I was 29 at the time. He was my future and it was just wiped away,” she says. “But I refused to let his name go down.”
During the course of making funeral arrangements, Charney and Small’s family got together and made a joint decision to start a new nonprofit organization in his honor. “His family knew my professional passion of working with children and the plans Marc and I had,” she says. “This seemed like the best way to keep his memory alive.”
Five years later, Small Steps in Speech is responsible for giving out grants in all 50 states for children to receive private speech therapy. The organization has been recognized by the American Speech and Hearing Association and received a Distinguished Honor Award from the New Jersey Speech & Hearing Association earlier this year. Charney credits the success of Small Steps in Speech to the support of her family, board members and local volunteers.
“I never thought we’d reach this level,” she says. “So many people stepped up to make this happen and I had no idea it would turn into hundreds of thousands of dollars in donations and grants given out nationwide in Marc’s name.”
Charney says she is consistently amazed at the sheer number of people who have heard of her organization and apply for grants. “In the first year, we received 20 applications. Now we receive hundreds throughout the country,” she says.
Small Steps in Speech accepts applications four times a year, many sent in by parents or therapists. Applications are evaluated by a committee that looks at factors like financial status and severity of diagnosis, as well as whether or not their insurance will cover any part of the therapy. “Sometimes insurance might pay for 10 sessions, but the child needs 52 sessions, in which case we’ll pick up the cost of the remainder,” Charney says. No matter what, children with any speech or language delay are eligible.
A majority of the organization’s funding comes from personal donations, says Charney. She says several organizations hold regular fundraising events, like the South Jer-Z Riderz motorcycle club and MacKenzie & Yates Martial Arts, with all proceeds going to Small Steps in Speech. “We are an all-volunteer staff. All of the money we receive goes directly to the kids,” she says. “It’s amazing how these people are willing to help and pass the money along to our organization.”
Families who found themselves with nowhere to turn have been able to get the help they need through Small Steps in Speech. “Many of them tell us they feel like the schools have given up on them,” says Charney. “But we don’t give up on them. This funding is helping their child make improvements. We see video of children eight months later saying words, and we know it happened because of what we did.” Christopher is one of those success stories.
“He went from three to five words and gestures to asking and answering questions,” says Woloszyn. “He is a happier child now, as his level of frustration has decreased significantly. We have more work to do but we are off to an amazing start and as a mom, to hear the words ‘I love you, Mom,’ is something I dreamt of. That dream has come true and he tells me every day.”
A lasting legacy
Charney candidly speaks about how difficult life has been since losing her fiancé. “It’s been five years but I haven’t quite reached the point of being ready to move on. I hope to, but he’s part of my journey,” she says. For this reason, she takes an annual trip overseas to help children in need. She’s been to India, Tanzania, and this summer she will travel to China. “I do this as an individual. It brings me inner peace and helps me get out of the rut of feeling sorry for myself.”
She says she hopes Small is proud of the organization’s accomplishments. “He was a humble person who never wanted to be noticed, even when he was high-ranking he never went around pointing it out to people,” she says. “Now his name and picture are so known through the organization and I think he would be proud of the hundreds of kids we’ve helped.”
She also says she sees similarities between her late fiancé and the kids she helps every day.
“He refused to give up and I want to tell those struggling not to give up,” she remembers. “There is funding out there and it doesn’t hurt to apply. Every child has a voice and they deserve the right to find it.”
For more information about Small Steps in Speech, call (888)-5SPEAK6 or visit SmallStepsInSpeech.org.
Published (and copyrighted) in South Jersey Magazine, Volume 11, Issue 5 August, 2014).
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