Your Story Matters: Meet the Russell-Woodard Family

BY KENDRA ROGERS, MS

PANDAS (Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus) is a condition that affects children who have experienced many strep throat infections. The bacterium in their bodies results in neurological symptoms. PANDAS generally results in autism-like symptoms and diagnoses of autism. PANDAS is a subset of PANS: Pediatric Acute-onset Neuropsychiatric Syndrome. It can mean relapsing-remitting OCD, rapid emotional changes, rages, changes in handwriting and overall school performance, among other symptoms. The RussellWoodard family learned about their oldest son’s PANDAS/ PANS when he was 4 years old, and a physician noticed the elevated bacteria levels in his body after learning about his aggressive symptoms.

Jennifer, Aubrey’s mother, shares that Aubrey was just 2 at the onset of his initial sensory processing issues. Kai is Aubrey’s younger brother who is also diagnosed with PANS/PANDAS. Like other neurodevelopmental conditions, Aubrey and Kai express the same diagnosis differently. They both experience autismlike symptoms but Aubrey also exhibits flares of OCD while Kai’s are PDA. Now 9 (Kai) and 13 (Aubrey), the boys and their parents have significantly improved. That is not to imply they are not without plenty of struggles. Jennifer recounted her frustration at a therapist telling her to “fill her cup” after a significant outburst after a therapy session. Parents of special needs children know all too well that we neither have cups nor the ability to fill them.

School has been another significant challenge for the Russell-Woodard family. Each time they think they have a “right” fit, something happens that pushes them back to the beginning. Again, though the family recently began a new schooling journey that “felt right”, they have had to change gears upon learning just a week in that it didn’t fit their needs. After years of attempting public, private, and charter schools with IEPs without finding a good fit, this endeavor finally felt like it might be the answer that allowed Aubrey and Kai to have the learning environment that was right for them. Unfortunately, it seems the past replays and the school was not able to meet the boys’ needs as Jennifer anticipated. Jennifer, working to run a new company, and her husband are busy professionals working to engage their boys with opportunities to grow academically and socially so homeschooling is no longer sustainable, like for so many families.

In addition to school, talk therapy, and other medical support, Aubrey enjoys playing guitar when he chooses to (remember, PDA) and learning about whatever his current “deep dive” interest is. Right now, D&D is his passion. Jennifer has expertly crafted ways for him to enhance his life skills through his passion, too. Aubrey is learning to write scripts, create board games, and edit videos for his YouTube channel. Kai works hard on the ice playing hockey with the Police Detroit Athletic League where Jennifer has found the elusive beast—fellow parent support and coach support. Not only is Kai advancing his abilities, but Jennifer is surrounded by people who not only abstain from judging but jump in when needed. Recently, Kai had a meltdown on the ice and the coach helped him regulate while a parent encouraged Jennifer. Kai also plays 4 different instruments. His hyperfixation helps him be a strong musician.

Battling vestibular dysregulation, immediate gratification demands, inability to self-regulate, school challenges, and intense rages, Jennifer knows she is the calm in every storm. That doesn’t quell the existence of storms beating her down from every angle, yet she surges on working to create spaces for Aubrey and Kai where they can be safe. Not only safe but fulfilled. Like other families of special needs children, Jennifer wants her boys to be successful in life in ways that continue to bring them joy and allow them to be who they are. She fights daily battles, not only with her sons but with society to make this happen. Every special need looks different, but everyone comes with a human being attached to it who deserves love and acceptance.

Being the constant caregiver leaves little to no time for parents to reconnect and regroup. Jennifer and her husband have a rare date-night babysitter who gives them a reprieve, but no one to help during the long days of constant management. The isolation parents of those with special needs feel every day weighs heavily. There are times when hope wanes and complacency tries to steal joy. Remaining steadfast when her boys are melting down over screen resets and expectations takes a toll on Jennifer. In these times, she, like others, wonders whether she will be able to prepare her sons for a world where they are not understood and seem unwanted. She wishes for compassion and kindness in a world that lacks empathy toward those who are different.