Inspired by Love
Area parents of children with special needs share their stories
When it comes to raising children with special needs each of these parents share the same sentiment: get involved! Instead of sitting on the sidelines, each of these area parents took action. Whether it was choosing to head up a well-established local organization, starting their own foundation, or organizing a monthly support group, each of these parents turned challenge into opportunity. Inspired by their own incredible children, these parents found ways to give back to the community, promote awareness, and connect other families with special needs.
"When I found out in the hospital that Matthew had Down syndrome, I immediately realized that I really didn't know what that meant. Would he be sick? Would he learn? Would he be able to go to school? I was recently separated from my husband and knew the road would be longer alone," says Cheryl Carleton, a single mother of two – Christina, who turns five years old this September, and Matthew, who has Down syndrome, and will be turning four years old just eight days after Christina's birthday.
Three months after Christina was born, Cheryl was pregnant again. "While I was considered high risk, given my pregnancy history as well as my age (then 41), Matthew was born full-term and perfectly healthy," says Cheryl. The ultrasounds never indicated something abnormal or the possibility of Down syndrome. But Matthew was just five hours old and still at the hospital when he stopped breathing and turned blue. The doctors quickly stimulated him and he began to cry. "As they prepared him for the NICU for further observation, Matthew was handed to me. I looked into his eyes and turned to the doctors and asked 'do you see Down syndrome?' Not knowing what that really meant, I surprised myself that I had even thought of it," says Cheryl. Matthew spent 18 days in the NICU to stabilize his blood oxygen levels, and that's when Cheryl received the results of Matthew's blood/chromosome tests: it was Down Syndrome "I had no idea the ride I was about to go on," says Cheryl.
Cheryl's research about Down syndrome began on the internet. But what she found tended to be clinical definitions. "I knew I needed more intimate answers," she says. That's when she found the Flower City Down Syndrome Network, a network of families, professionals, self-advocates, and friends who all share in the joys and challenges of a loved one with Down syndrome. Cheryl immediately joined and began attending the monthly meetings geared towards children ages birth to six-years-old where she met families with children the same age as Matthew. "We shared concerns and joys as well as the bazillion questions we all had," she says. FCDSN became like a second family to Cheryl. "When you have relationships with people in similar circumstances as yours, there is a special bond that forms and your family becomes enriched," she says. She believes it's crucial to network and surround yourself with families who have similar circumstances as your own. "There is no need to reinvent the wheel. So many families have traveled down the road you are headed on and the work has been put in motion. My advice would be to seriously consider the benefits of joining a local organization for its resources, social activities and networking opportunities."
Shortly after joining FCDSN, opportunity knocked: the volunteer chair needed to step down. The position required attending the monthly meetings, which Cheryl was already doing, and finding speakers for those meetings. "I selfishly agreed to be the volunteer chair," she says. "I say selfishly because I knew that if I was the one responsible for getting speakers, then I had the advantage to solicit topics and speakers that were important to me. A win, win for me!"
Cheryl's involvement with FCDSN continued to grow. At the same time that Matthew was turning one year old, FCDSN held its biggest fundraiser of the year, the Annual Buddy Walk. "My family and I decided to participate and to celebrate Matthew's birthday at the same time," says Cheryl. "I solicited my friends and family to participate in honor of Matthew. We made t-shirts with his picture on the back and gave them to anyone who donated. The results were overwhelming." The group of more than 70 friends and family members raised more than $2,000 – more than any other group. The next year was an even bigger success, with more than 100 people attending the walk on behalf of Matthew and raising more than $6,000.
Cheryl's involvement was getting the attention of then President, Sue Accapezzato, who was nearing the end of her term. "Sue asked if I would be interested in leading the organization as her successor," says Cheryl. "I laughed and responded with 'I've never been the president of anything ... except my home, of course!'" Cheryl has held the position of President for the past two years.
While the organization has been a huge benefit to Cheryl and her son, she says the advantages don't stop there. "I believe that if I had to pick just one of the important factors of being part of FCDSN it would be the benefits that my daughter (without special needs) gets. As we socialize and make friends with others in the group, my daughter sees no disability, no difference, nothing 'special' in her brother or her new found friends. They are all to her ... just normal."
Dan Kulp, a fellow member of FCDSN agrees that being part of the organization offers a wealth of benefits. "It's just nice to have a support network of people who understand the challenges that raising children who have special needs presents," he says. "They know that it is the most challenging thing we do, but also the most rewarding." Dan is the proud brother to four siblings who have Down syndrome – three who were adopted. Recently, Dan and his wife, Elizabeth, adopted two children from China with special needs, Simon who has Down syndrome and Danielle who has a rare chromosomal disorder called Alfi syndrome. Simon, who is now nearly four-years-old, and was three at the time of his adoption, is the first child with Down syndrome to ever be adopted from China.
Raising kids who have special needs is challenging, Dan says. But he suggests that parents try and step back and see the bigger picture. "I sometimes get a little overwhelmed and forget to see the future and how what we are doing now is impacting the future as our children get older," he says. He also stresses that finding the right support is crucial. He reminds parents that it's important to "lean on others for help."
"Never give up – all that hard work to give them everything they deserve will pay off in the hugs and smiles," says Jeralyn Cicotta, the mother of eight-year-old Alyssa and 5-year-old twins, Matt and Jack. Two days before his second birthday, Jeralyn took Jack to a developmental pediatrician who diagnosed him with PDD – NOS, which is short for Pervasive Developmental Disorder, Not Otherwise Specified. In other words, Jack has an Autistic Spectrum Disorder. In the summer of 2007, Jeralyn and her husband, Tom, became increasingly concerned with Matt and his delays with speech and his sensory needs. After bringing him to the same doctor, he too was given a diagnosis of Autism.
Dan with Elizabeth, Danielle and Simon
After the diagnosis of her sons, Jeralyn wanted to raise awareness about Autism. "The increase of children diagnosed with Autism is astounding," she says. "Raising awareness to get the treatment and help needed is most important." This led her and Tom to take action and co-found Autism JAM in February of 2008 along with Terri Jakubowski, Pete Fazio, and her sister Jennie and brother-in-law Steve Collucci, whose daughter Alina was also diagnosed with Autism. They decided to name the foundation "JAM," in honor of Jack, Alina, and Matt. The Autism JAM Foundation, in collaboration with Autism Speaks, raises funds for Autism research and Autism awareness across our community.
Jeralyn admits that as a parent with children who have special needs, getting out and doing everyday things can be a challenging task. "When we started Autism JAM our main objective was to give our friends and families in the community a day to enjoy and not have to worry about their son or daughter having a tantrum, showing different behaviors, or emotions in public," she says. The first event included a backyard BBQ. "We wanted everyone to just enjoy and have a good time, feeling the acceptance and love and most of all fun!" Since that time Autism JAM has grown to include sponsors, volunteers, donations, and an auction.
"We also hope to promote early identification of children with autism, to inform, educate and advocate everyone regarding intensive, developmental interventions for young children with autistic spectrum disorders," says Jeralyn. "You can make a difference by raising awareness by just showing patience and understanding. I would tell any parent to always advocate what is best for your child," she adds. While she says that starting an organization takes a lot of time and energy, the rewards make it all worthwhile. Since their foundation two years ago, Autism JAM has raised more than $50,000 and donated it to Autism Speaks®.
Erin & Amily above; Jamie & family below
"Although my journey as a mother has been filled with moments of wonder and joy, there have also been many challenges that have come with raising a child that has special needs," says Erin Beyers, the mother of three-year-old twins Ella and William. William was born with a rare brain malformation which has caused significant developmental delays, a seizure disorder, and a visual impairment.
"During my pregnancy with the twins, doctors were unable to tell if William would survive and if he did what challenges he would face," says Erin. At three months of age William began receiving Early Intervention Services. Erin admits that it's hard to balance her daily life while parenting twins who are at drastically different developmental levels. She says that at first she felt isolated, especially because William didn't have a specific diagnosis. But then she started to research programs in the community and get involved. She began meeting other parents who had experiences similar to her own through Parent to Parent (a parent matching program), the Parent/Child program at Mary Cariola Children's Center, and various trainings through the Advocacy Center. "These programs and connections with other parents have made a tremendous impact in my life," says Erin.
But Erin wanted to do more. "I wanted moms to have an informal support network of fellow mothers; a place where they could feel comfortable sharing their struggles and triumphs raising a child with special needs. But I also wanted to form a group that was not based on specific diagnosis," she says. "Everywhere I went I saw information about Autism, Down syndrome, Cerebral Palsy. But what about those parents whose child has special needs but not a specific diagnosis? And there are several of us!" This led Erin and Jamie Nodine to co-found the support group MEMO (Meeting Extraordinary Moms Out) last September.
"We wanted to make sure that others didn't feel like there's no one else who understands some of the struggles we all go through as parents of children with special needs," says Jamie Nodine, whose son Joshua was diagnosed with a congenital CMV (cytomegalovirus) infection at 10 days old. As a result, he has intracranial calcifications, microcephaly, enlarged ventricals, spastic quad. CP and slight unilateral hearing loss.
Jamie agrees that raising a child with special needs has been a challenge. "We don't know what the future holds for Joshua, and that is hard," she says. "It's also really difficult to see other children progressing in areas that Josh isn't. While we are thrilled when our nieces and nephews reach the typical 'milestones,' it's hard to see our child struggling in those areas." Being part of MEMO has been an awesome experience, Jamie says. Even though each of the mothers has a child with different abilities and different struggles, they can all relate to the stresses of raising children. "It's a time away for me," Jamie says. "It's a time to just be myself and enjoy the company of other women who are in the same boat. It's so wonderful to have time out from everyday life where I can eat a yummy dessert and laugh, cry or simply be with some other amazing women."
The group welcomes moms of children who have been diagnosed with multiple special needs, who are medically fragile, as well as many who have yet to find a diagnosis. "Being part of this wonderful group of moms has made a huge difference in my life," Erin says. "Not only do I love getting out for an evening of tasty desserts and chatting but I have learned so much. We empower each other to be stronger, more informed parents and better advocates for our children."
Jillian Melnyk is the Editor of Genesee Valley Parent Magazine.
This article originally appeared in the September 2010 issue of Genesee Valley Parent Magazine. Copyright 2010.
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