pioneer Parents in Indiana

By Angela Arlington

Angela Touseull’s oldest child, Alex, was born at 12:50 am, just a few days before her due date. She remembers how it was a picture-perfect pregnancy with no signs of anything unusual. Alex entered the world with a head full of beautiful black hair and weighed 7 lbs, 6 oz. She and her husband, Darren, were beyond excited to be first-time parents. Within a week of coming home, Angela received a call from Candy Zickler, the nurse practitioner at the Riley Hospital Down Syndrome Clinic. “She set up appointments for Alex with several specialists, suggested books we should read, hooked us up with the local Down syndrome parent group, and contacted First Steps so we could get early intervention services started. We were lost and had no direction until that phone call. She gave us so much hope.”

“No one in our family had ever had a baby with special needs, so it didn’t even enter our minds that we would have anything other than the ‘Gerber’ baby,” Angela said. “I loved being pregnant and seriously relished every bit of those nine months. When Alex was born, and I first saw her, I was worried, but the nurses assured me she was fine. It wasn’t until the next morning when our pediatrician broke the news that we began to learn she might have Down syndrome. Over the next few days, my husband and I were in and out of denial. We pulled out our old baby pictures and assured each other she looked just like us when we were babies.”

“As I look back at her newborn pictures today, it was obvious she had Down syndrome,” Angela added. “A genetic counselor eventually visited us at the hospital and confirmed the diagnosis. He also told us she was healthy and her heart looked good. At that time, we had no idea there could be additional medical concerns to consider. We were already so overwhelmed and learning she could have more complications besides just cognitive issues was a lot to take in. It felt like he dropped this bomb on us and then walked away. Our minds were filled with so many questions. How were we going to do this? We didn’t know how to be parents, let alone the parents of a child with special needs. We grieved for the future we thought was lost for Alex. Thoughts like whether she would go to college or even the prom consumed me. How would I go back to work? We were scared. We were crushed. We were lost. We were sad. We wallowed in self-pity for a few days.”

When Alex was participating in a program called “Lekotek” at Easterseals Crossroads, Angela met Mariea Best and her daughter Maddie. Maddie had Down syndrome and was a few months younger than Alex. Mariea started the Indiana Down Syndrome Foundation and invited Alex to be a model in the “Down Right Beautiful” calendar, which was a fundraiser to raise awareness of individuals with Down syndrome.

“It was therapeutic for me to put my energy into something positive,” Angela recalled. “Mariea and I quickly became friends.”

Shortly after the calendar was published, Alex was diagnosed with a germ cell tumor. Cancer. The family’s priorities changed immediately as Alex was admitted to Riley for surgery to get a central line. Chemotherapy started soon after. It was a dark and difficult time, but Alex came through it all with great resilience.

As Alex healed and went into remission, Angela learned of a fundraising effort that the National Down Syndrome Society was organizing called The Buddy Walk. “I talked to Mary Delaney and a few other moms of children with Down syndrome that I had become close to and we decided to bring the walk to Indianapolis,” Angela said. “I remember sitting around my kitchen table with these amazing mothers as we began the planning. None of us really had any fundraising experience, and we certainly didn’t have a bank account to fund our efforts, but we had passion. Our first Buddy Walk was an overwhelming success, not only financially but more so in the connections that we saw parents making that day. I remember we had the Noblesville High School choir who came out to sing the National Anthem, and we served food to all participants. It was a huge undertaking, but at the conclusion of that day, we immediately decided this would be an annual event.”

In subsequent years, it became a tradition to have Chris Burke, the star from the hit television series “Life Goes On,” come to Indiana to perform with his band featuring John and Joe Demasi. They arranged for the musicians to come into town a few days early and set up assemblies with local elementary schools to spread awareness. The Indiana Buddy Walk quickly became one of the largest walks across the country.

Eventually, the Indiana Down Syndrome Foundation became Down Syndrome Indiana (DSI) with the Buddy Walk being the premier event for the organization. DSI also provided the funds and manpower to bring the first Best Buddies office to the Indianapolis area. The 2021 Buddy Walk took place in October, celebrating the 24th year of the event. DSI’s main goal is to promote the acceptance and inclusion of people with Down syndrome.

“Connecting with other parents who have children with special needs has been the most therapeutic thing I could have done on this journey,” Angela said. “In a previous job with Be The Match, I was a bone-marrow recruiter and saw many patients thrive as they volunteered with our organization because they were putting their energy toward something positive. I think something similar happens when parents get connected in the special needs community. Many of my closest friends today are those that I made years ago as a result of Alex. We learned from each other, hung out whenever possible, and unknowingly built a support system where it felt safe to truly let our guard down and talk openly about all the feelings we were experiencing. Now, our children are adults and have become lifelong friends, too.”

Angela became a stay-at-home mom a few months after Alex’s birth. She and her husband welcomed two more children into their family, Cailin and Kip. As her kids got a little older, she decided to get back into the workforce. “I started working as a council coordinator for First Steps, which allowed me to continue my passion for the nonprofit sector and families who had children with special needs,” she said.

During that time, she helped organize the first DSI board of directors and continued to serve in many capacities as a volunteer. DSI grew to the point that their office moved out of Angela’s house to a dedicated space and staff was hired. It was a dream come true for those moms that had once sat around her kitchen table.

In 2011, Angela’s brother David was diagnosed with leukemia. Siblings are the first place doctors search for a stem cell match for a patient in need and although Angela was one of five siblings, no one in her family was a match for him. Thankfully, an anonymous donor was a match and gave him the cells that prolonged his life. “I knew I had to do more,” she said. “I felt a calling to change direction and become a bone-marrow recruiter for Be The Match. This position was beyond fulfilling and allowed me to not only recruit individuals for the bone-marrow registry but also see matches made as a result of my efforts. Another rewarding aspect of the job was to be able to deliver stem cells from donors all around the world. That was such a privilege.

Now, Angela is back at First Steps working with an amazing team. “It’s been full circle, and I’ve been fortunate to have these opportunities to do such fulfilling work,” she said. She now also volunteers with Gigi’s Playhouse, serving as vice president of the board of directors. Alex has watched her siblings and typical friends go off to college, graduate, and get married. “It can be difficult for a person with special needs to witness when they feel their own life is standing still,” Angela said. “That’s why we’re continually striving to work toward having her live her best life while also giving ourselves the grace to know we’re doing the best job possible as parents. We wish there were additional independent living resources for adults but we recognize how far things have already come and we’re thankful for the parents who have gone before us and paved the way.”

Alex is now 27 and working toward increasing her independence so she can someday live on her own with some supports. “We recently purchased an older home in Noblesville with an apartment in the back,” Angela said. “Hopefully, this will be a transition piece in her journey to allow her to live her dreams. This is something I never imagined possible when she was born. It’s unbelievable how far she has come!”

Alex is active at Gigi’s Playhouse, where she’ll be the keynote speaker at next year’s “I Have a Voice” gala. She works at Walgreens, attends Same As U, and also loves going to events organized by the THRIVE Social Group in Hamilton County.

Angela advises families, “To this day I always tell parents to find someone with a child that has special needs who is a few years ahead of you and learn as much as you can from them. As I reflect on Alex’s life and how far she has come, I’m embarrassed at how ignorant I was when she was born. Alex opened our lives to a whole world we rarely had taken time to notice before. She has been a blessing and although we have challenging days as all parents do, we are forever thankful that Alex brought us to this place.”

If you would like to be a part of this Pioneer Parent section or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.