5 Helpful Things Plane Passengers Can Do for My Special Needs Family
It won’t be long now before it’s time for the dreaded plane ride to the hospital, the only one capable of handling our son’s treatment. After hours of packing and preparation I arrive at the gate, waiting with baited breath for the announcement:
“First-class passengers and those who require more time may begin boarding.”
I race down the jetway while pushing my son in his wheelchair, carrying a car seat, four bags, a purse and a feeding pole. I leave everything at the end of the jetway, including my son, so I can install his car seat. The stewardess greets me at the opening to check his seat for compliance. By the time I have it installed, an onslaught of people have started down the one-lane aisle. I can’t get back up. I’m a salmon swimming up stream. I have to step into a seat or hang out with the stewardess in her coffee area. On occasion, she’s been nice enough to stop the line so I can get through. Once I’m back with Jack and my things, I carry my 50-pound boy down the aisle, trying to keep his feet from hitting people in the face. I buckle him in and wait until everyone is seated to get back in the aisle.
My bags are so bulky they often hit people as I carry them through. I wish I didn’t have to take so much, but all these items are necessary: feeding tube supplies, pump, medications, suction machine, enteral formula, back up outfits, diapers, the list could go on and on. When I finally get the bags to my seat, wouldn’t you know it, all the cargo holds are full. I let the stewardess know and she goes through the holds looking for space. By the time the plane starts taxiing, everyone knows me and my son. I’m already wiped out.
But the ride has just begun. My co-passengers who now know us by face are about to learn a lot more. For some people, the pressure of flight makes their ears pop. For Jack, it makes him poop. So within 20 minutes after take-off, my 6-year-old has concluded his business in his diaper. I’m sorry, I know it stinks. But I have nowhere to change him. So yes, everyone within a 12-foot-radius not only can see us, but can now smell us.
Jack hates a dirty diaper; wouldn’t you? He’s non-verbal, and has two cues to let me know he needs to be changed: a high-pitched scream and hitting himself in the head unrelentingly. I can’t explain to him I can’t change his diaper. Most of one side of his brain has been removed, he’s had a stroke and his brain cells are not formed properly. He understands zero from me. So he continues screaming.
By now my fellow passengers have seen us, smelled us and heard us. And now the person sitting in front of us is in the position to feel us. Jack has two movement disorders, chorea and dystonia. He cannot control many of his body movements. So now he’s kicking the seat in front of us — not on purpose — because his brain is sending false messages to his muscles.
I’m so tired and self-conscious by this point I just want to lay my head back and cry. Sometimes I do, with my son sitting next to me, hitting, screaming, kicking and smelling. I close my eyes and let the tears roll down my cheeks. This only creates another show.
Trust me, no one would like to change the behaviors, sounds or smells more than me and my son. But we can’t. While of course I don’t want to disturb my co-passengers, there’s nothing we can do about it. We didn’t choose this. Keep in mind, within minutes you’ll be done. This can not be said for us. We work 24/7, making the best out of the way things are.
So while there’s not a lot I can do, here are some things you can do to make families like mine more comfortable:
1. Smile sincerely.
2. Tell us we’re doing a good job making it through the flight.
3. Make conversation with me and acknowledge our children, even if they can’t respond to you.
4. Tell us not to worry, even though I will anyway.
5. Offer to help get us on and off the plane.
In the future if you see a “Jack” while traveling, try being more than just tolerant, be empathetic. It might not change the course of your trip, but it will certainly change the course of ours.
Follow this journey on Heather Steiger’s blog.