autism on vacation

My family spent the last two weeks of August traveling around the southwestern part of the United States.  It was an “adventure” to say the least.  Traveling and sharing ONE hotel room with a husband three children (ages 9 to almost 16) is challenging.  My middle child, a daughter, has autism, and that greatly multiplies the challenges.

my kids and our friends' daughter at the Grand Canyon

my kids and our friends’ daughter at the Grand Canyon

We never could have imagined taking this trip just one year ago.  Even taking it this year was difficult enough.  I am grateful that my autistic daughter is relatively high functioning.  I am grateful for all the progress she has made in the past few years.  Even so, there were times that I reached my limit.  Thankfully we were also traveling with friends, so they were able to help take up some of the slack when I needed space.

Most autistic people need structure – a routine. It gives them a sense of security in knowing what’s expected of them, but also what to expect from their surroundings.  Actually I think the same is true for ALL of us, but with autistic people it’s even more important.  My daughter is no exception.  When she is away from familiar surroundings and routines, some of her “unique” behaviors become even more prominent.

  • Even on a good day her speaking voice is loud, we remind her several times a day to use an “indoor” voice, or to speak quieter.  The further along we got on this trip, the louder she became. Her baseline volume seemed to increase each day!
  • She hasn’t flapped since she was little, but she “examines” her hands sometimes, and will stroke her hair.  Not only did she play with her hair constantly, she also started stretching her arms out over her head (you know, like you do when you wake up in the morning) to “exercise.”  I think she was finding ways to physically release stress and excitement.  Perhaps we should’ve found a fidget to help her, but we never imagined we would need something like that since she hasn’t had one of those in years.
  • Her eye contact became increasingly worse as the trip wore on, and she became more clumsy than usual, ex. spilling drinks at dinner, dropping and BREAKING a souvenir our friends’ daughter had bought (luckily right after the purchase, so she was able to replace it immediately). My daughter became much more high maintenance around the table, needing help to cut food, constant reminders to chew with her mouth closed.  It didn’t help that we ate out for every meal and were trying different kinds of foods, although we were very careful to find places for her and my 9 year old son that served food they liked.
  • Speaking of which – – her CONSTANT focus on FOOD!  (The technical term is “perseveration.”) She was always asking, “What’s for lunch?” “What’s for dinner?”  Sometimes she asked about lunch right after we’d eaten breakfast, or asked about dinner right after lunch.  And she would also repeat the question.  She’d ask, “What’s for dinner,” we’d give her an answer, then an hour later she’d us again, and so on.
when we got to Las Vegas (short stop to fly home), she spent quite some time stimming on the view from our window

when we got to Las Vegas (short stop to fly home), she spent quite some time stimming on the view from our window

I realize all these behaviors are ways she was using to cope with the constant change in her environment, and not being able to anticipate what she would be seeing and where we were going.  But understanding the behaviors and being able to put up with them are two different things.  The regular stress of such a trip, dealing with her siblings, my husband (at times) and even with our friends PLUS her gave me moments of complete exasperation.

These moments when I hit my limit are not pretty.  I call them “mommy meltdowns.”  The tears flow and my nose runs and a headache soon follows.  I hate autism.  I hate my daughter for being who she is – then I hate myself for hating her and being angry, and I feel like the world’s WORST mother and human being for having those feelings. I also hate myself because I know there are many autism families who cope with much worse than we do.  AND THERE YOU HAVE IT – a full blown pity party and guilt trip rolled into one.  Like I said, not pretty.  And having a mommy meltdown (I actually had two on this trip) in front of friends, even good friends, adds embarrassment into the mix, which just made me feel UGLY.

I don’t mean to imply that we had an awful vacation.  It was wonderful to see our nation’s national parks and to enjoy time with friends.  The kids complained as kids do, but overall it was fine (although not something I’m in hurry to repeat).  But I am so very thankful to be home.  Thankful the kids have started back to school, thankful for the routine.  Thankful for my daughter’s routine, which gives her comfort.  And when she is comfortable, the rest of us, me especially, are a LOT more comfortable too. We may go on vacation, but autism NEVER does.

I’m no expert, just a mom who’s been in the autism camp for almost 13 years, and here are some tips for traveling with autism:

  1. If at all possible, plan a vacation in ONE place.  This is what we usually do.  Go to the beach and stay there.  Don’t be hotel hopping from one place to another like we did this year.  At first your lodgings will be strange, but after a day or two it will become more comfortable and everyone will relax a bit.
  2. Just accept it and don’t try to eat fancy or different.  My husband and our friends wanted to experience some of the foods of the culture, and I understood that.  And one night we did manage to get my daughter to try a simple burrito.  But autistic children are FAMOUS for being picky eaters. You live with it at home and you can’t expect it to be different on the road.  One night we separated and while the rest of the group ate sushi, I took my younger two kids to Pizza Hut. Less complaining, more actual eating, and it was cheaper too. Pick your battles.
  3. Bring their comfort objects.  This is a no-brainer, although the fear of losing said comfort objects may tempt you to leave them home.  Thankfully my daughter is approaching teen years and so her kindle is now her “thing.”  There was a time not too long ago when it was a bag filled with toys, and boy did we have to search before we left a place to make sure we had found EVERY single one of them.  Make a checklist of everything you bring for them, and check it off before you leave. That way you don’t forget.
  4. If you’re traveling to a place they’ve never been show them pictures.  Explain as much about the place as you can.  I wish we had done more of this.  My daughter had never heard of Arches National Park or Bryce Canyon.  She knew a bit what to expect at the Grand Canyon, but not many of the other places we went.  If she HAD known, perhaps her anxiety wouldn’t have been as high and she would have been calmer.
  5. Know what to do for yourself.  After my first mommy meltdown, I stayed up after everyone had gone to sleep and had some quiet time.  The next morning I got up early and had a heart to heart with my husband so that he knew what was going on and so I could give him concrete ways to help me that day.  For example, “I CANNOT sit next to her in the car today.”  (We were travelling in an 8 seat Suburban – 5 of us, 3 of our friends, NO spare room).  He and our friends made sure I had my space.  I also wrote in my journal EVERY day, which helps me sort through my feelings.

Traveling with autism isn’t easy, but with the right preparation, (a care plan in place for you AND your child), it IS doable.  And if you’re child is too severely affected to even think about a trip, then please, for YOUR sanity, sometimes “home” is the best place to be.  Take the money you would’ve spent going away and hire help to give you little breaks throughout the school break.


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One thought on “autism on vacation

  1. NickyB. September 15, 2015 at 10:09 pm Reply

    Happy to hear that you all enjoyed the vacation. You are so right about Autism never being on vacation. We don’t travel more than 4 days with the kids but I always do #’s 1,3, and 4.

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