Around the time of her son’s first birthday, a copy of Time magazine with a cover story on autism landed in the mailbox of Angie Potter. Angie and husband Kent had no idea how memorable this issue would become. Kent had once known a kid who had autism, so they gave the article a look. “I didn’t know much about it,” Angie says. “So we started reading the signs and we were like, ‘Wow that’s Sam.’ You know … wasn’t pointing. Didn’t make eye contact. Preferred objects to people. Didn’t really love to be held. All of these things that were in the magazine.”
The Potters took their worries and their magazine to the developmental pediatrician they’d been seeing since Sam’s premature birth. The pediatrician was hesitant to give an early diagnosis but agreed there were some worrisome signs.
As Sam continued to grow, so did his symptoms. Loud sounds became increasingly disturbing to the boy, who steadily disengaged from the people around him. At 2 1/2 years old he was diagnosed with sensory processing disorder (SPD). By 4 he’d received a formal diagnosis of Asperger’s syndrome.
Angie spent countless hours taxiing Sam to doctors’ appointments and therapy sessions. The Potters did everything within their power to encourage his development, including spending close to $1 million out of pocket for private therapy. “We did tons,” Angie says. “Everything from applied behavioral analysis to music therapy to eating therapy. Physical therapy. Occupational therapy. Speech therapy. We did everything, and he just continued to make progress.”
Sam made significant strides, first while attending a private school for children with learning differences then transferring in 4th grade to Green Elementary, a public school in Allen. Angie was able to return to the job she loves as a teacher, and the Potters added to their family.
Now, Sam is 11 years old and big brother to Luke, 8, and Olivia, 2. Doctors gave him the additional diagnoses of ADHD at age 7 and a mood disorder at 9. Although he has improved steadily, Angie admits that Sam occasionally still slips into rages of crying, screaming and flailing. The tantrums can last for hours. “Sometimes I’ll just cry,” Angie says. “I’ll take a time out. I have had to take the other two in a room and lock the door away from Sam, because he will have his rages. But it’s normal. It’s true life.”
On the hardest days, when a Route 44 from Sonic and a run don’t help, Angie counts her marriage as a saving grace. With a divorce rate of 80 percent for families that live with autism, Angie is especially grateful for her husband of nearly 17 years. Six years ago he quit a lucrative job as a techie at McAfee to launch autismspot.com, a comprehensive website designed to be a free resource for families living with autism.
“He is one in a million,” Angie says. “We have always been a team. There have been times when it has been stressful, like with any family. But we have made a plan that we agree on, and we are both open to try new things. It’s amazing. It’s actually brought us closer, which is a huge gift.”
Angie is refreshingly open about the difficulties that come with parenting a child with special needs, but she also stresses that being Sam’s mom has changed her in many positive ways. She laughs when she remembers worrying during her pregnancy about buying baby clothes from Gap and having the perfect nursery. Her idea of the “perfect little family” and her list of priorities shifted dramatically when Sam was born seven weeks early and even more as they learned to live with his Asperger’s.
“He has taught us so much about what matters,” she says. “He has grounded us about how to appreciate things that most people just take for granted.”
One of those things is the typical sibling dynamic found in most homes. Having a child with special needs in the house means extra work for Angie, the peacekeeper. Sam loves his siblings but has admitted to his mom that it’s hard for him when they’re loud or walk into his room unexpected. A year ago, Luke began seeing a counselor to help him process the emotions he deals with as the sibling of a kid with special needs. Angie makes it a point to give him some undivided attention daily.
“We’ve talked about how you’ve been growing in compassion in ways that other kids won’t grow,” Angie says. “That you are in this family for a reason, and though it’s hard, we get to celebrate so much that other families don’t get to celebrate. So we all fit together, even though it’s a rocky puzzle sometimes.”
Angie is a strong believer in applauding individuals for being who they are. It is her passion for celebrating that uniqueness that led her to create Celebrate Me last year at Green Elementary. Celebrate Me is a week devoted to cultivating compassion, understanding and acceptance in kids. Although the focus is on people with learning differences and special needs, typical kids are encouraged to celebrate what makes them unique too.
“I feel very passionately about wanting everyone to feel comfortable with who they are, and that’s my goal with Celebrate Me,” she says. “To feel good about who you are, but to also respect other people for being who they are. It is very powerful for the kids.”
For the entire week, volunteers and educators work to teach the students through books, songs and activities. During PE the kids participate in stations that simulate what it’s like to have a particular learning difference or special need. Angie would like to see Celebrate Me grow and expand to other schools.
“I hope we can be open about learning differences and challenges and that it’s OK,” she says. “I think it’s important to shape character and change hearts.”
