This week there is a family in the news who were kicked off a United Airlines flight because of a request they made for their autistic teenage daughter. The family is suing the airline, hoping to cause change in the industry that will prevent something similar happening to other families again.
The 15 year old young lady was hungry during the family’s travel home to the west coast from a trip to Disney World. The mother asked a flight attendant for something hot for her daughter to eat because she is sensitive about foods. Next thing they knew, the plane made an emergency landing and the family was removed from the plane.
This is another example of why awareness is so important.
I have a lot of experience traveling with an autistic child, so I want to take the opportunity to share some of the things that have happened to us.
Last summer, I was on a flight with our 2 kids. We always try to get bulkhead seats, so I won’t have the stress of trying to keep Liam from kicking the seat in front of him or messing with the tray. Of course the trade off is you don’t have access to your bags because they all have to go in overhead bins during takeoff and landing.
As much as possible, I try to follow the rules. I wait for the seatbelt sign to go off before getting up. But a lot of the time, the pilot never turns the light off for no apparent reason. Maybe they forget, or maybe there is turbulence possible that we’re not aware of. After a long wait, Liam was asking for food and growing more and more anxious, and I finally got up to get him a snack from my bag. I quickly grabbed a package of pop tarts and sat back down. We had a small cup of water with a lid and a straw from the airline drink service. By the time Liam was able to get a start on his pop tart, the flight was beginning its descent, and the flight attendants started asking for our service items, including the one cup of water we had. I explained that we needed to keep the water because my son was eating a very dry pop tart, and he has a tendency to choke. The flight attendant was not happy with my refusal, and was obviously agitated by me. She explained it was FCC rules. I said I understand and I’m sorry, but I have to keep the water for my kid’s safety.
The truth is, Liam has had a lifelong issue with laryngomalacia, or floppy esophagus, and feeding issues, and I really am frightened by his tendency to choke. I don’t want to be a problem passenger who won’t follow the rules, but my child’s safety is way more important. I couldn’t see what good it was going to do to go into a big explanation about his autism. So fine, let them just consider me a problem passenger for today. I don’t really care right now.
It wasn’t a good option for me to take away his pop tart or his water after he had calmly asked me for it for the past 45 minutes. This is the thing autism parents know. In stressful situations, like travel, we need to work hard to avoid things that will trigger a meltdown. They are very hard to stop once they start, especially in a stressful, public and confined space.
A few minutes later, another flight attendant stopped by trying to take my plastic cup. I had to half explain again. What I really wanted to say was what that mom on the United flight said, “maybe if my kid starts crying and screaming and scratching, then you’ll want to help.”
We autism parents may be on the edge of our own meltdown at any given moment. We are under constant stress from every direction, just trying to put out fires over here and avoid another one over there. But we have to keep it together and put on a brave face at all times. We’re ready for any battle that comes our way, from rude looks to unhelpful people. We do it every day. That’s why we’re called warrior moms. Nothing is more important than protecting our kids. We are tough, and it will take a lot to bring us down. But don’t think you won’t get called out for it publicly.
I sometimes think when we’re traveling, we must look like a disheveled and whacked out group of people. Liam is often extra impulsive at the airport. Now we have our service dog Blue in tow too. At least that helps people realize we have some REAL issues and challenges going on. Who knows, maybe someone will even offer their help on occasion. I am usually juggling a little more than I am equipped for. Thankfully Lilah is now old enough to give me a lot of support.
Unfortunately, I haven’t been offered help very often. If I am offered help, it is usually from someone who recognizes I am dealing with ASD. Believe it or not, it is comforting when that is recognized, and I am always very thankful for their help.
Outsiders may say we shouldn’t cater to our children’s demands. They may think we’re bad parents for allowing our children’s inflexible behavior. Maybe they even think we should just stay home if our child’s behavior isn’t perfect. They have no f!?&#X@ clue, so we don’t really care what they think!
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