Father’s Day, Family, and Finding Community

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We hope you all had a wonderful Father’s Day! Dads are irreplaceable parts of our lives, and we’re so grateful for the many dedicated, patient dads in our midst. This month, we had the pleasure of speaking with Wisconsin resident and dad of three – Aaron Geisinger. From just one conversation, it’s clear that Aaron personifies many classic traits of a great father, from his commitment to his kids, his adoration of sports, and his energetic, joyful spirit. Aaron was fresh from the Milwaukee Brewers game, still wearing his jersey, in fact, when we sat down on Zoom to speak with him about his experience as being a dad to three kids – the eldest of whom, Aaden, has hypoplasia of the corpus callosum.

A New Diagnosis and a New Path

Aaron and his wife Amanda began noticing milestone differences in their son Aaden when he was around two-years-old. After multiple observations and vision problems worth looking into, Aaden was brought in for testing and the parents were informed Aaden had hypoplasia of the corpus callosum. Aaron recalls that the person who had called to deliver the news mispronounced the word ‘callosum’, and thinks back on that as a testament to how little was and is known – even by healthcare professionals – about these disorders. Aaron states, “Like any good millennial, I began Googling the term. I remember the movie Rain Man came up and I thought, ‘Okay, I’m familiar with that’ and then it started me down a rabbit hole of research.”

One fortunate occurrence was the forthrightness and investment of Aaden’s pediatrician. Aaron shared, “The pediatrician said ‘I never want to be dishonest. I’ve never had a kid with this ever. I can check if you would want to see another pediatrician.’ I said, ‘No. For that very reason, we want to keep seeing you because I appreciate that honesty and transparency.’ The doctor did research and was determined to navigate this with us. We had a neurologist who was following Aaden, and we started to treat his hypoplasia.” Aaron is grateful to have had individuals dedicated to helping find a new path for Aaden, but they still needed information and support.

Finding A New Family in the NODCC

Soon after that, the Geisinger family heard that their local baseball team, The Madison Mallards, were hosting a fundraiser for DCC awareness. At that game, the Geisinger family met the Barge family, who have been prominent in the NODCC for many years. The Barge family shared about the NODCC, and Aaron recalls looking it up on his phone right there at the game. They met the Barge family’s son, Nate, who also has partial-ACC, and Aaron recalls feeling so hopeful interacting with someone so smart and dynamic who shared a diagnosis with his son. Soon after that, they began to get plugged in with the NODCC community.

Shortly after their initial introduction, Covid hit and the planned NODCC conference that year was cancelled. The Geisinger family took the opportunity to attend the next conference in Texas in 2022. Aaron recalls, “I remember my wife and I both said, ‘This is so cool to be with other families that just get it. We don’t have to explain to anybody.’ We just we felt right at home.” After the conference in Frisco, Aaron and Amanda joined virtual calls like the dad and mom chats and remained close to the NODCC.

When the 2024 conference was moved to Chicago, since they were only a couple of hours away, the Geisinger family jumped in to be on the planning committee. They set up the photo wall, balloon displays – you name it. Aaron remembers how great it felt to be part of it all and give back. Now, they get to be that welcoming presence for others just like the Barge family initially was for them.

Parenting in a Neurodiverse Family

When asked what it’s like to raise a neurodiverse child alongside neurotypical children, Aaron shares, “We try to just treat Aaden like any other kid. We didn’t want to have different standards for the children. We might make adaptations, and we would support him in the way that he needed to be supported, but that’s just the nature of supporting your children. So, we signed Aaden up for soccer, baseball, and choir. Given his condition he’s quite a good athlete. He is a good soccer player and still gets those good hits on the baseball field, too. Academically we have a lot of extra support for him. He does have an aid who helps him in the classroom.” Aaron is grateful Aaden has been kept largely in general education classes at his school, so his academic path can be as typical as possible, while still receiving the help he needs.

During a recent class literature assignment, when it became clear the content of the novels might pose a challenge for Aaden to synthesize on his own, Aaron chose to read the book alongside and even sometimes out loud to Aaden, talking through each character and question. Because of this level of commitment to help his son understand, Aaron shared that Aaden got high marks on the accompanying assignments! This is the epitome of dedication to your child’s pursuits, and the proof of his dedication is in these small successes.

Now that Aaden is a teen, he’s starting to become more aware of the differences of his academic program, and a little more sensitive to it, so Aaron and Amanda are helping him navigate that. Aaron says, “He’s told us he doesn’t want to have a disorder of the corpus callosum. And I get that. We told him, ‘You are Aaden. This is part of your story. It’s not all of you, but it is you.’”  They’ll frequently share with him,  “This is what’s part of your plan.” This helps Aaden to know they’re all there to support him on his journey.

Situations surrounding social cues and technology use have arisen more frequently, and Aaron is working with Aaden to help him interact with friends as life grows a bit more tricky in the teen years. Aaden doesn’t have a phone yet, but he has a smartwatch, so he can text and call his friends. But when a friend doesn’t respond right away, it’s hard for him to work through the urgency he feels versus the relative casual nature of the situation. When Aaden sends friends texts such as, “Where are you? Get on Xbox!” Aaron and Amanda have helped him understand that texting isn’t for immediate needs, and that it’s okay if friends aren’t always available right now. That’s been a learning curve for both Aaden and his parents.

All of these are typical teenager experiences, but when a brain condition like hypoplasia is involved, Aaron shared it can feel amplified. But they’ve also seen that same drive and impulsivity fuel some amazing accomplishments. Aaden had shared he wanted to be a pitcher in baseball. His neurologist had advised that reaction times can be a challenge, so pitching might not be the best position to play. Aaron wisely introduced Aaden to top players who play positions better suited for Aaden’s skillset, such as star outfielder Aaron Judge. This helped Aaden direct his passion and stay excited for the sport. Still, Aaden’s supportive coach worked with the family to find a safe way for him to keep up with his love of pitching. He pitches in practice behind a safety net. This way, even if he’s not pitching in games, he’s happy he gets to try.

“Diving in” to a Family Pastime and Conquering Challenges

Swimming was always Aaron’s sport growing up, and while his younger two children, Anderson and Aimee, enjoy swimming competitively, Aaden has largely stuck to soccer and baseball. This year, however, Aaden showed interest in swimming for the first time, and before long he was signed up to be on an adaptive swim team. Aaron shared that Aaden’s drive to practice has been so great; he even commandeered his dad for several minutes of a recent family swim party to practice his freestyle streamline stroke. While everyone else played, splashed and ate, Aaden worked to perfect his swim skills.

When it came time for his first swim competition, Aaden took first place! Aaron beamed as he recalled, “Aaden was just jumping up and down so excited. For me that’s a very personal big win to see him do something that I love myself, and that our two other children love.” When he received his ribbons, Aaden was beaming with pride.

Aaden’s neurologist let his parents know it would be unlikely he would ever ride a bike due to the inherent balance issues that often accompany partial-ACC, but Aaden isn’t accustomed to missing out just because he has a brain disorder, and was soon begging his parents to ride a two-wheeler. He started by riding down a grassy hill until he felt confident in the balance portion of riding. Fast forward to today –Aaden regularly joins his family on 10-15 mile bike rides! He continues to amaze his parents and family around every turn.

Rich Community and Dreams for the Future

Aaron is exceptionally grateful for their small community of about 6,000 people in the suburbs of Madison, WI. He shares, “Our village is so small, everybody knows everybody. There are pros and cons to that, but something amazing is that everybody’s grown up with him, so all of the kids know him and they support him. It makes me so proud how they care for him.” As a touching example, Aaden was recently playing in a middle school basketball game, and during the game his shoes came untied. Upon noticing, one of Aaden’s teammates called timeout himself, and went over and helped him tie his shoes. Aaron and Amanda were choked up, and so proud in that moment to live in their community. They wish the entire world could see what it looks like to support someone in this way.

When asked what future he’d like to see for his family and for the NODCC, Aaron dreamed, “I guess it sounds like a pageant answer, but honestly? I just want a world that celebrates differences. A world where kids like Aaden are embraced, not just accepted. And for the NODCC, I think it’s about continuing to advocate, both for research and for families. I’d love to see more early support for parents when they get that first diagnosis. We didn’t get that; it was a Google search for us. Wouldn’t it be great if the care team could say, ‘Here’s your diagnosis, BUT here’s a community that gets it.’?” Aaron also stated he’d love to see more get-togethers for regions of the country between NODCC conferences – something we all wholeheartedly agree with!

Whether it be at home, in the pool, during homework time, or on the field – the world needs dads as caring and involved as Aaron. We are so grateful for his time, sharing with us his unique perspective on life as a dynamic dad to three kids – all of whom are so special in their own ways. We hope Aaron and EVERY NODCC dad had a relaxing and memorable Father’s Day!