Gary Dietz is author of “Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them).” Gary’s son, Alexander, has an interstitial deletion of the lower arm of chromosome 13.
Dads of children with disabilities are just like Dads with children who are not mentally or physically disabled. We have our good days and bad days, our heroic moments and selfish times, our regrets and our triumphs. Let me tell you about an early Father’s Day gift I got this year.
My fourteen year-old son, Alexander, has attended a specialized residential placement for the past two years due to multiple behavioral, intellectual, and sensory issues rooted in a 13q genetic deletion. Despite this drastic life change, we rock out at dinner every Wednesday night and charm the locals. We have sort of adapted to only seeing each other at home every other weekend. Together, we have done a pretty good job of sharing our home this past year with my significant other of three years and her two younger children.
But challenges arise, and they are not always with Alexander!
It is a three-hour roundtrip drive to pick up Alexander and bring him home for blended family time together. Although I look forward to this time together, things can go wrong—keys get locked in the minivan, soccer game schedules change at the last minute, Alexander might need to leave a movie after only 30 minutes—and it leaves me feeling uncharacteristically jealous of Dads with typically developing children. A Dad never really gets completely over the whole “comparing” thing between typically developing children and children with special needs. Despite my son’s excellent behavior, decent communication of his needs in the movie theater, fun on the playground, and patience with the schedule changes, I can feel a bit jealous of the other kids’ ability to just go to their soccer game and actually stay through the end of the movie to have a more typical Saturday than I get to have with Alexander. A daddy micro-meltdown isn’t really allowed. Just when a grown-up is ready for a good tantrum, the wisdom of children shows up and we realize how much fun our weekends together can be. My eight-year old stepson, Avery, stepped up on one challenging Saturday and announced: “It’s time to have some boy time. Girls stay upstairs. The boys are going to have a light saber battle downstairs.”
The force is strong in this one.
The next thing I know, Avery led Alexander and me downstairs, set up some rules, handed out the light sabers and then we started the epic light saber battle. Physical fun! Boyhood playing with toy swords! Alexander was really doing well, much better than I think Avery expected. But we were all having fun. We were running around like crazy Jedi Knights and swashbuckling with our laser swords.
In those few moments of light-hearted fun I had a rare, brief glimpse of my son in a very typical activity and the “disability” melted away for that time.
A Happy Father’s Day to all the Dads out there—on their swashbuckling days and their meltdown days. We are all united in the love for our children of all abilities.
Visit www.dadsofdisability.com to read Gary Dietz’s blog and find information on how to purchase his book.