By Miriam Bernard
“If you can’t find a milestone to celebrate, then celebrate an ‘inchstone’.” These were words of wisdom shared with me by Amy Connolly, NODCC community member, nurse, and single mother of three children, – Jesse, 13, Jake, 11, and Marcey, 9. Amy’s son, Jake, has Hypoplasia of the Corpus Callosum, and through his diagnosis she has become a wealth of insight and experience on having a child with a DCC. Read on to learn how the NODCC and its conferences have made an impact in Amy’s navigation of her child’s needs, as well as her advice on creating the best life possible for her children despite the busyness of life and work.
Amy was made aware of Jake’s DCC after he was born, when he began missing certain growth and physical benchmarks around four months old. Further testing revealed Jake’s Hypoplasia of the Corpus Callosum. Amy was appreciative to be able to get Jake started with early intervention therapies such as speech and physical therapy soon after his diagnosis. During those early years, she tried to learn as much as possible about the resources and therapies available for Jake, and fight through each of the roadblocks his neurodivergence presented. In the Spring of 2014, Amy discovered the biggest resource she’d encountered up to that point: The NODCC. Her then-husband encouraged her to attend the conference, and she was very glad she did.
Since that year, Amy has attended every NODCC national conference, and in addition to learning from specialists and experts, she states that one of her largest reasons for going is to visit with the many friends she’s made over the years. The breakout groups and conversations she’s had at the conference have given her knowledge of special therapies she otherwise wouldn’t have been privy to – such as a hippotherapy (a special therapy that utilizes the natural gait and movement of a horse to provide motor and sensory input for patients with physical and mental disorders.) and also aqua therapy – both of which Jake has benefited from over the years.
Amy mentioned that a few times she has considered attending the conference alone without her children so she can more easily navigate all the events and enjoy visiting time with her friends, but she knows that it is just as important for Jake and his siblings to attend as it is for her. Friends have even remarked on physical progress and changes in Jake over the years, as he went from very limited mobility, to running through the halls of the conference. These types of milestones are an encouragement for everyone, so Amy knows bringing the kids is the right thing to do. She also mentioned that seeing and conversing with adults with ACC at the conference and witnessing all their various successes gives her so much hope for Jake’s future.
Amy states that one of the biggest benefits to having the NODCC community in her life is better understanding the “wait and see” process of taking her son’s DCC one day at a time. Navigating this challenge has helped her realize that every family has “stuff” they’re dealing with, and this just happens to be her “stuff”. She didn’t have to “accept it” persay, because from moment one she’s just gone with the flow of what life and Jake’s DCC throws at her.
This mindset has certainly helped Amy navigate the complicated nature of being a mom to a special needs child, two neuro-typical children, and working as a nurse. The loss of her mother and main source of childcare two years ago left Amy in a state of near constant exhaustion trying to juggle it all. But she’s been encouraged by staying active in NODCC groups – both physical and online, which has helped her to know she’s not alone. Despite the busyness of school schedules and work, Amy finds time to go on outings with her kids that work for their needs and lifestyle. She purchases annual passes to the locations they enjoy most, such as Chicago’s Field Museum and the Zoo, so that if it isn’t a great day for Jake or if he has an immediate need, she knows they can return on a better day and enjoy the location at a future date for no additional cost.
Amy has also utilized the special recreation department of her neighborhood in suburban Chicago, and a large cooperative park district that has given her kids the opportunity to play and try new activities – such as ice skating – in a setting more conducive to Jake’s needs. It’s clear Amy has a strong desire for her children to experience enjoyable activities and learning in settings that will really allow them to grow. However, she was quick to mention they spend lots of time relaxing at home, too, and sometimes just enjoy a good Netflix show during their downtime. Balance is key.
If you’re a parent newly navigating the world of DCCs or figuring out next steps for your child or family member, Amy wants to share that all you need to do is take it one day at a time. What will be will be, and there is no use in stressing unnecessarily. You will figure this out, and you can always reach out to those of us who have been there. Join every group that interests you in the NODCC, and don’t limit yourself, because you never know where you’ll find useful information. As Amy so aptly put it, “We’re all here for each other, so reach out to anyone and everyone.” And while you’re at it, celebrate every ‘inchstone’ you can, until you look back and realize you’ve made it a full mile.
The NODCC hosts a biennial international conference to educate and connect those living with a disorder of the corpus callosum and their loved ones, family, and friends. The conference features 40+ sessions led by professionals with experience with DCC and/or special needs topics. The event also includes researchers who are studying callosal disorders or the wiring of the brain. The NODCC is in the planning stages for the 2024 conference. We are looking in the Washington DC Area and hope to have a date soon. If you would like to join the 2024 conference planning team or if you have questions about the upcoming conference, please email Barbara Fonseca at firstname.lastname@example.org.