xmas 2013

xmas 2013

Wednesday, October 24, 2018

Autism & Travel

B looking a little nervous before take-off

Traveling with kids is hard. It takes a lot of planning and preparation. Traveling with a kid on the spectrum takes "hard" to a whole new level.

All of our family lives out of state. So travel has always been somewhat of a necessity. On average, we go once a year - with a few additional trips over the years. I'd estimate B has been on an airplane at least 20-30 times. Our experiences have varied and although he has done it often enough to have some routines developed, it doesn't get any easier.

Preparation begins early. We have to try to make it as easy on him as possible - only direct flights and under 3 hours is about his limit. We sit in 2 rows - with B and I behind his dad and brother in case he decides to kick the seat. With him in the window and me in a middle seat so he is never sitting next to someone we don't know.

We've practiced as much as possible. An at-home simulation in therapy isn't quite the same but we've done it. We took 2 classes at the airport (Navigating Autism) which were AMAZING but again, not quite the same as the real thing. I talk to him in the days leading up to the trip and explain where we're going etc. We look at pictures. I have no idea if this helps him or makes him more anxious but I feel like it's better to warn him.

We have a strategy for our time at the airport. We try to make sure he has enough to eat that he isn't too hungry but not too much so that he won't want any of the snacks I bring since that's one of the only ways to keep him busy and quiet (at least for a short while). We have a prescription for anxiety medication above and beyond the daily dose he already takes. We time it so he has it as close to the flight as possible - enough time for it to hopefully kick in but not too much so that it wears off mid-flight. To be honest, I'm not sure if it has any effect.

We have TSA pre-check to try to minimize waiting in lines as much as possible. Security has been a source of stress (meltdowns) in the past. We inevitably will have to wait anyway because his weighted blanket always triggers a second security check.

I pack 2 carry-on bags stuffed full of things for him. I put a book in there for myself but I have never once even taken it out of the bag. My attention will be laser focused on him.

I spend $20 or $50 beforehand buying novel toys, fidgets or whatever else I think might possibly keep him busy. And for 2.5+ hours, I will hand him things and try to keep him occupied and reasonably quiet. And I will be on pins and needles and holding my breath. We usually go through 8-10 brief clips of dvds (rewind and repeat over and over) and a variety of toys and fidgets that he will use to stim for a minute or two at best. Sometimes a puzzle will work. Or putty or stickers. Nothing lasts. He will eat lots of carefully planned snacks to keep his ears from popping and for one other way to keep him busy,

Having just gotten back from a weekend trip, I thought I'd share what a "successful flight" looks like when autism is part of the picture:

On the flight out, we were delayed 30 minutes. I walked all over the airport with him in an effort to burn as much energy as possible before he had to sit for so long. Sitting and Brady don't really mix. I had 2 different tracking devices with me but I couldn't get him to keep either one on or with him so I clung to his hand tightly and hoped he wouldn't let go. I am only about 20 lbs heavier and 4 inches taller so he will soon surpass me in size. A scary thought. My stomach was in knots.

We went to a McDonald's in another terminal because I was reasonably certain he would eat that and we wouldn't have to be in a busy restaurant. We were both hot and sweaty before we even got on the plane. I took him to the women's restroom twice. We were lucky that there was one with a huge handicap stall and a separate sink - usually we cram into one tiny stall together and I remind him over and over not to open the door before I'm finished. I have to make sure I don't have to use the bathroom on the plane because that would be impossible. He would never understand if I got up and left and I could never leave him in a row with a stranger.

We sat at the gate until he got antsy and started being loud and then we were on the move again. It's funny - in all the times we've been in airports, I have never once seen another kid with disabilities. We always seem to be the only ones. And we always get a lot of strange looks and glares.

Once we got on the plane, he pulled out his weighted blanket, headphones and dvd player before I even sat down. This is good. He knows the routine. On this particular flight, he fixated on the window. It became an obsession. He opened and shut it every 3-10 seconds for the entire duration of the flight. Thankfully, we were sitting by the kindest grandma who understood when I told her there was no way for me to stop him. She complimented him several times on the flight and told me at the end that I was an "awesome mom". I felt like a warrior.

Upon landing, I let out my breath. We were lucky. We have had many flights that didn't go so smoothly. It's not easy being under a microscope in a confined space with someone who is not skilled in self control, completely unpredictable, never still and never quiet. We've had dirty looks and one unforgettable time where the flight attendant comped drinks nearby and where he and I both cried - him because he wanted to be anywhere but on that plane and me because there was absolutely nothing I could do to make it any easier for him. We've had trips where we thought we'd never make it and swore we could never do it again.

And that's just getting there. Once at our destination, we face new challenges. It's so hard for him. I think he wants to go because he always seems excited but then the reality of so many different experiences and none of his usual comforts and routine are often too much. We've had trips where he didn't eat, many where he (and us) didn't sleep and lots of meltdowns and uncharacteristic behavior. This time, he curled up in a fetal position in bed in a back room for hours after we arrived. He was shivering at times and crying at others. I thought it was due to the medication he'd taken but he has never had that reaction before and he was fine when we came home so I think it was just how the anxiety and stress manifested.

We do it because we will never leave him behind for a holiday even though holidays themselves are super stressful for him. And because he's part of our family and we want him to be part of our extended family. I do often wonder if it's all worth it or if we are just torturing him. With a child who can't communicate, you never truly know.

On the return flight, we left on time but had less time at the airport so that was stressful. Another full flight with another stranger next to us. A lot of times the return trip home is the harder one because I feel more confident after just having traveled and because we're a bit tired and worn down and sometimes my bag of tricks isn't as carefully thought out and fresh.

This was another overall good experience. Our only issues were that he spilled an entire cup of water on me. I should have known better -  I usually never get a drink (that whole no bathroom break issue) and now I have another reason why I should just go thirsty. Also he was determined to destroy a stress ball that I bought for the trip. He was ultimately successful and there was a white, sticky mess everywhere. But that $10 ball bought me a good 30 minutes of entertainment between the two flights so that was money well spent. I'm used to cleaning up messes.  I did almost have a panic attack when the battery was dead on the dvd player but Dad saved the day by finding a power outlet.

This is how we travel. We plan for the worst and hope for the best. It's all we can do.

As we landed and I finally exhaled, I looked over at the woman who was sitting next to me. She had been engrossed in a book the entire flight and never said a word. So it surprised me when she smiled and spoke to the little boy across the aisle from her. He was maybe 7 or 8 and apparently he was her son! What a crazy different experience. I never even knew she was traveling with a kid and for me, my kid was all I was able to focus on the whole time. I might have been jealous in the past. This time, I was just relieved that she was able to sit next to US and READ and be undisturbed. In the world of Autism, this is a victory. We are warriors.




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