By ALPA's Family Assistance Working Group
World Down Syndrome Day is a global awareness day which has been officially observed by the United Nations since 2012. Each March 21, the global Down syndrome community creates a single global voice to advocate for the rights, inclusion and well being of people with Down syndrome. To commemorate this worldwide awareness event, ALPA members share their family stories.
F/O Andrew Gislason, Delta Air Lines
My wife, Amanda, and I have been married for 19 years and have one son, Gunnar, who is 15 and has Down Syndrome. We didn’t find out about Gunnar’s diagnosis until he was born, so it was quite a surprise for us. The support from organizations such as the Down Syndrome Association of Minnesota were essential in helping us navigate the first few difficult months when we had a lot of questions, but not many answers.
1. What is the most challenging part of being a pilot and providing care for a special needs family member?
I would say the most challenging part of being a pilot and providing care for a family member with special needs is probably what most pilot parents would say: the time away from home. It comes with the job, but it’s very helpful to have a support system to help with care. Raising a child with special needs brings many challenges that require more time and extra care. When I am away, my wife becomes the primary caregiver and it is comforting to have grandparents, family members, and trusted friends to help provide care when I can’t be there for appointments, illnesses or milestones. When I’m on the road, FaceTime really helps keep in touch as well. It’s an everyday occurrence if we can make it happen.
What is most enjoyable about caring for a family member with special needs?
Overall, the people that my wife and I have met on this journey have been absolutely incredible. From therapists, teachers, paraprofessionals, coaches, other parents of kids with special needs, and the individuals with special needs themselves have all been amazing and we are grateful to have met and worked with them. They have been an invaluable resource.
The thing that’s been the most enjoyable this year has to be Special Olympics basketball. At 15 years old, Gunnar decided that he wanted to play basketball with some of his friends this year. If you saw the movie The Champions, it’s exactly like that. Individuals of all ages and abilities out there having a great time and cheering each other on, even if they’re not on the same team. It’s a very wholesome and inspiring experience. I encourage anyone who hasn’t been to one of these games to seek one out and attend or volunteer. You won’t be disappointed.
F/O Ben Harris, Delta Air Lines
Along with little Emma, I have two other toddlers. So life is busy as you can imagine. Emma is actually a twin. The most challenging, but also the best blessing, of being a pilot with a special-needs child is scheduling. It’s a blessing that I am able to bid for a position that allows me the seniority to have the days off I need for doctor’s appointments and therapies. I’m also fortunate that I am able to bid a reserve line and get lots of time at home. The challenge comes when something comes up last minute, like a sickness or unexpected doctor visit, and I am on the other side of the world and can’t be home to help. All in all, I wouldn’t trade my situation for anything. My schedule flexibility allows me to be present for a majority of her appointments and therapy sessions. While other dads are working their 9 to 5 jobs, I’m able to be an active participant in her caretaking.
Capt. Mike Caronia, Delta Air Lines
The most challenging aspect of being a pilot and caring for a child with Down Syndrome is the constant worry that Jenna will need medical care while I am far from home. It is very common for children with Down Syndrome to have pulmonary, cardiac, or neurological health risks that often require specialized care and hospitalization. The fear that Jenna may one day require medical care when I am not nearby to be with her nor able to care for the rest of my family is a very real concern.
The most enjoyable experience of raising Jenna is the sense of pride and accomplishment that I get when she achieves developmental milestones. Jenna is my youngest of three children, so I am not new to celebrating first words, first steps, and a number of other “firsts.” Jenna is on her own timeline for reaching milestones, which is often significantly delayed when compared to my other two children. That makes the celebration of her accomplishments truly special.
