7 minute read
Pioneer Parent: Meet Jennifer Parker
BY ANGIE ARLINGTON--COMMUNITY ENGAGEMENT COORDINATOR, WRITER AND CONTRIBUTOR
Jennifer Parker’s son Alex was diagnosed with autism when he was 18 months old. “I knew that he wasn’t hitting his milestones, but I didn’t want to be the firsttime mom who compared my kid to everyone else,” Jennifer recalled. “The diagnosis felt like a death sentence. That was 25 years ago and there was very limited information about autism. The only reference to autism that I knew was from the movie Rainman. I didn’t know a single soul that was autistic. I spent day and night researching how to “cure” him. I tried every therapy, medication, supplement, diet, training method. I left no stone unturned and yet he remained autistic.”
Alex is an adult now, and he is loving, kind, smart in his own way, and compassionate. He has value, worth and purpose. And yes, he is still autistic.
“Now we talk about how he should embrace his diagnosis - it is like having brown hair or blue eyes,” Jennifer said. “It is a part of who he is and how God made him. And as it turns out, Alex will have been our easiest child among our five.”
When the Parkers were pregnant with their fifth child, Hope, they were confident that God would not allow them to have another child with a significant disability. “We felt like we had filled our quota with challenges and special needs kids in our blended family,” Jennifer said. “As we discussed our pregnancy, I asked my husband, Andy, what was the one thing he couldn’t handle with regard to this child - even though at this point we thought all was well. His immediate answer was ‘hypoplastic left ventricle’.”
Andy had taken care of these children as an anesthesiologist at Riley Hospital for Children, and he saw the trauma that they went through and the devastation for the parents, along with the poor outcomes. Fast forward three months to Jennifer’s next pre-natal appointment, where the Parkers found out they were having a girl. Unbelievably, the Parkers also learned that their baby had hypoplastic left ventricle. Stunned, devastated, horrified, and confused were some of their initial feelings. “I had no inkling of just how difficult this journey would be for Hope, Andy and me, and our other kids,” Jennifer said.
Hope required so much hospitalization that the Parkers became a well-known family at Riley Hospital. “We had to rely on others for help,” Jennifer said. “I felt guilty when I was away from our kids at home and guilty when I wasn’t at the hospital with Hope. It was a lose/lose situation.”
The Parkers were fortunate to have many dear friends and family who provided food, childcare, house cleaning, errand running, laundry, and prayers. The kids also had to become more independent. At an early age, they all learned to do their laundry, with the youngest learning at age 8. The family also had to bring nurses into the home.
Hope came home after 3 months in the hospital and major open heart surgery. “I didn’t have nursing help that first week,” Jennifer recalled. “I was doing the night shift so Andy could focus at work. I had to use a stethoscope to make sure her NG tube was appropriately placed, and then give her meds through the tube throughout the night. I had to set four different alarms. I quickly came to a point of desperation when I was so tired that I squirted the meds on the floor and couldn’t remember what I had given her. I thought that she was going to die from that mistake. We would wind up with 24-hour nursing coverage for several years.”
In 2014, the Parkers founded the Alex and Ali Foundation, named for Alex and his best friend, Ali Callahan. “I had a wonderful mentor, Susan Kriese Vest, who walked me through the formation of the foundation,” Jennifer said. “Yes, it took hours and hours of planning and implementation, but I knew I needed to create this organization to help my children and other families.” Nearly a decade later, this successful not-for-profit is still providing employment opportunities and vocational training to young adults with autism and other disabilities--now at three Indiana locations.
The first location is the Hope Gallery, which opened in downtown Bargersville in 2018. Named for Hope, who was valiantly living her best life despite her profound cardiac anomaly, the gallery sells art, unique items, and sweet treats. Working with volunteer trainers, the disabled employees learn all aspects of running a unique retail business. Happy Hounds, a doggy daycare in Greenwood, opened shortly thereafter and teaches employees to provide exceptional, loving animal care, obedience training, and facility maintenance.
Jennifer says she had no intention of opening a third location. The family is still grieving the tragic loss of Hope, who passed away unexpectedly in February of 2020 at the age of 13.
“My intent was to just get Alex situated with purposeful work in [the Evansville] area,” Jennifer said. “However, the issues are the same here as they are in the Indianapolis area. Alex and I began working in our dining room and asking other adults with developmental disabilities to join us. Very quickly, we had 10 adults at a table that only seats six. We were [busy making art] hammering, gluing, and grouting while sitting on my velvet dining room chairs - something had to give.”
Not long after, a storefront became available only two blocks from the Parker’s Newburgh, Indiana home. That was the sign Jennifer needed, and Hope Gallery Newburgh opened in 2022.
“It was evident that God was calling us to begin again,” Jennifer said. “In the six months that we have been open, we have served 50 team members.” Her life now is a juggle between the day-to-day running of this new location while continuing to run the rest of the foundation. “My success is because I surround myself with incredibly talented and mission-minded volunteers. And my husband is incredibly understanding and patient as I “work” full time without getting paid and rarely have dinner on the table. He does have clean clothes to wear - most of the time!”
Jennifer laughs that Alex is in charge of much of the housework and his definition of clean is a little different than hers, but she’s okay with that. “I learned a long time ago that there is no such thing as a superwoman. I am intentional about what things that I focus on and what I let go of.”
For Jennifer, the best part of running the foundation is working directly with the team members. “Their souls are beautiful. They have so much to offer us, so much to teach us. They truly make our world a better place in which to live. We just need to have eyes to see.”
Jennifer encourages other parents to enjoy their kids for who they are deep down inside. “Don’t try to fix them. Enjoy the journey with them, laugh with them, dance with them. Don’t worry about how clean your house is or isn’t. We all want the best for our kids, but sometimes we have stop trying to make them into who we think they should be. My son still enjoys watching kid’s tv shows and pulling his wagon around the community. So be it. It is okay, he is happy.”
