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

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

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.

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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.

Vacation (yeah right…)

The blog has been pretty quiet lately.  For two weeks my family was on “vacation,” traveling non-stop in the western region of the United States.  We went to Phoenix, Sedona, Willams and Page, Arizona; then a stop in Colorado that included the famous “Four Corners” – the one place in the United States where four states meet in one spot.  then we had several stops in Utah before ending up in Las Vegas, Nevada, from which we flew home.

It was the first airplane rides for two of my children.  They were very excited, and I’m glad the flights didn’t disappoint them (although my son got a little queasy for part of the flight home).  I was especially glad for this since they weren’t excited about much else on the trip.  You see, this was no thrilling trip to Disney or any other exciting child-oriented attraction.  No trip to the beach to jump in the ocean.  We were going to experience some of our nation’s National Parks among other “historical” sites:  the Grand Canyon, Sunset Crater Volcano, Antelope Canyon (on Navajo Territory), Mesa Verde, Bryce Canyon and Zion.  Las Vegas at the end was just a means to get home, although we did a little sight seeing there too (just not the historical “natural” kind!).

The running joke for my kids was that we spent two weeks looking at “rocks.”  “Rocks” became known as another “R” word – something you did NOT say – something they did NOT want to hear!  You see, this trip was taken to cross an item off of my husband’s bucket list.  It was not their choice.  And they let him know it regularly and sometimes loudly.  Mostly things got loud in the mornings when we’d wake them up early and while rearranging the suitcases, go over our agenda for the day.  We NEVER unpacked. There were only two times we stayed in a hotel more than one night.  Exhausting for me and for them.

We managed to survive the trip, even having a few light-hearted moments for which I’m thankful.  We NEVER could have attempted something like this even one year ago with our youngest child and autistic middle child.  In that way it was a triumph!  To get through our agenda with three kids, the five us us sharing ONE hotel room (after another) for two weeks is a testament to our fortitude.  Right now the kids don’t want to talk about it.  They just want to forget it ever happened.  I hope that as the years roll on they’ll forget the monotony of “rocks” and come to appreciate the unique beauty of each place we saw, and the humor of our 21st century struggle to survive such a hardship!

“Hardship” is relative.  We experienced Native cave and cliff dwellings.  We heard from park rangers about the obstacles the Native people lived with every day and how they overcame them.  We heard from our Navajo guide in Antelope Canyon how the people hid in the Canyon to escape the march to reservations our government imposed on them, and how many never heard from family again.  We witnessed the poverty still so prevalent on the reservations today.  So when I say “the humor of our 21st century… hardship,” I DO mean “humor.”

One thing I have decided for certain, and told my husband very clearly – while I’m grateful for the trip and what I saw and what I learned, I am NOT doing anything like that again.  Not while we still have kids in tow.  NEVER.  It was way too stressful for me to get them up and packed and out every hotel room door every morning, and then hear them complain most of the time. That sounds like a school day to me, not a vacation!

Have you ever had a vacation like this?

The poor boy…

My kids had last week off from school.  I knew ahead of time that this vacation would be rough because it happened to coincide with Ash Wednesday.  It’s hard for pastors to take vacations the week of Ash Wednesday.  In fact, forget about it.  Perhaps a day trip, but even that didn’t work out this week because of other commitments we had to be home for, and oh yeah, THE WEATHER.  With snow and dangerously frigid temperatures it was hard to even go outside!

So we were STUCK.  And the one who suffered the most from this “stuckness” was my son.  My lovely, loving, eight and a half year old ball of energy.  He expressed some interest in learning to ski, and my husband wanted to take him – in fact, hubby worked his butt off so he could have Friday to do it, but then the wind chills went below zero again and it was a bust.  We know our son, and if he struggled in the least, plus was freezing, he’d hate it and never want to go again.  So he had little to DO.  He loves to play Sims (a computer game), but even that couldn’t occupy his busy body all week.  My son needs to move like any other typical eight year old boy.  My girls are of the age when they don’t need to move their bodies as much.  My teenager was happy skype-ing and face-timing with her friends, closed in the safe privacy of her bedroom, and my twelve year old autistic daughter has developed a love for reading, playing video games on her Kindle, and when her body was restless she danced along with “Just Dance” on the Wii.

But the boy…

As I said, my son needs to move.  Move A LOT.  But the poor boy was reduced to dribbling his basketball on our living room hardwood floor!  Part of me wanted to scream because it was giving me a HEADACHE, but what could I do – it was clear he was suffering more than me!  Plus, basketball is the first sport my son actually seems to enjoy, so discouraging the practice didn’t seem like a good idea.  BOOM BOOM BOOM – BOOM BOOM BOOM – BOOM BOOM BOOM.  His basketball, and my brain…  Physically bouncing off the walls – jumping down stairs, running up stairs, wiggling in chairs, hugging and climbing on whoever was nearest (the hugging is nice, but when he starts to climb up your body and hurts your back – not so much), bouncing on beds and couches and making mischief.  Oh, to have that kind of energy!  But to have that energy and be stuck in the house – it’s a scary thing.  Kind of like being the pinball in a pinball machine.

I had my son when I was 40.  Sometimes I feel like he’s gotten shortchanged because I don’t have the same energy for him as I did for his sisters – but then again, I don’t think they ever had the same kind of energy he does!  I know I was definitely more willing to supervise outdoor play, and to participate with them in outdoor play.  Perhaps it’s more of an after-effect of the depression that hit me when he was a toddler than my age – it’s hard to separate the two.  In any case, it wouldn’t have mattered this week because going outside to burn off energy was out of the question.

So I’m grateful they’ve gone back to school today, not only because the introvert in me is breathing in the silence, but because my son will finally have something to DO.

 

my happy place, part 2

Ok, so in my first post about the beach I got all theological and reflective.  It’s nice that on vacation I actually have a little time and “head space” to do that.  But I didn’t go on some beach retreat.  I was with my FAMILY – and that my friends is a blessing and a curse!  Sorry to use theological terms again, but if the shoe fits…

This vacation was a little different from past ones.  Money was really tight this year and we really hadn’t planned on going anywhere – maybe a few little day trips to keep us from losing our minds, but nothing expensive.  I shared this with some friends and one of them who owns a small condo very close to a beach area (and only lives there part-time, the other part is spent on the opposite coast) said, “I’m not going to be at the condo at the end of August.  Why don’t you guys use my place?”  My jaw dropped.  That was a hugely GENEROUS offer –  I gave her plenty of time to think about the FIVE of us invading her space when she wasn’t around – but she stood by it.

It was tight – her condo is ONE bedroom.  Hub and I used the bedroom while the two younger kids slept on her sofa-bed.  There was an alcove in the entryway with enough room to put an air mattress for our teen – the only thing missing was a door for ultimate privacy.  And boy did she miss having a door!  But free is free, so we had to make the most of what we were given.  But teenager was definitely NOT happy – not happy about her lack of total privacy, not happy about the slow wifi, not happy about being separated from her friends, not happy about having to spend a whole week with US, her weird and so-uncool family, plus she’s decided that she doesn’t like the beach anymore (who is this person and what has she done with my girl?).  Her attitude was really annoying.

There was an ever-so-slight shift in her behavior when I dragged her with me to tour a local lighthouse while her siblings and father stayed behind.  She enjoyed the view, but especially reading about the history of the place and seeing some artifacts raised from a shipwreck.  She enjoys experiencing history, but most of all anything that might have “paranormal vibes,” so the artifacts were really cool for her.  For the same reasons she also enjoyed a tour we took of an old military base used from the late 1800’s to the mid 1900’s.  Although she was disappointed she didn’t pick up any “vibes” there at least we got her to leave the condo and get her nose out of her phone!  Problem though was that the younger two HATED this trek.  They complained almost the whole time – too much walking, who cares about where the old guns were fired to test the munitions, who cares about the dark tunnels where the guns were stored underground, who cares about the ruins of the old barracks – – where’s the beach?

There was NO time during the week when everyone was happy.

The younger kids wanted to go to a restaurant every night, teen wanted take-out.  Younger kids wanted the beach, teen wanted to stay home (luckily at 15yrs, we could leave her back at the condo so she could have some private time).  Teen wanted to sleep in, younger kids got up early (remember teen had no door to block out noise).  You get the idea…

And my husband?  Well, he slept a lot.  It’s what he does on vacations, which is not always helpful.  And he is even more lost than I am about how to live with a moody hormonal teenage daughter.  I’ve only got a little edge on him there because I WAS one at one point, a long time ago.  And I’m more of a morning person, not that I LIKE the morning, but that’s when I have my surge of energy.  My husband is more of an evening guy – so I always wanted a walk in the morning and he always wanted one at night.  But we’re grownups, so I went on a night walk once with him, and he went on a morning walk once with me – the other days we just irritated each other with our opposite body clocks.

So that was our vacation in a nutshell.  Yet even with all that, we were at the beach, which is my happy place, and I WAS happy – and grateful.  Grateful for a wonderfully generous friend, grateful for my relative good health (fibroids, high blood pressure and perimenopause are manageable), grateful for the health of my husband and children (autism sucks sometimes but at least it’s not cancer), grateful for the quiet sunrises I enjoyed while my family slept and the condo was quiet, grateful for the warm sand under my feet, the sun on my face and the giggles of my kids, even though they were never all giggling at the same time.

Oh, wait a minute, I take that back.  There was ONE time during the week when all of them were laughing EXCEPT me.  We were at Applebees (a family friendly restaurant chain) and they were all (hub included) acting like beasts, and I started glaring at them.  My husband snapped a picture they all thought was HILARIOUS.  They laughed about that dang picture all week.  I leave you with this:

But this is MY favorite picture:

Grace in Friendship

My kids are on vacation this week.  On Sunday we drove to visit some friends of ours that have a cottage in the mountains.  Their cottage is part of a mountain village community.  We had been there in the summer, but never in the winter.  And as much as we would’ve liked a complete change of scenery (that is, someplace WARM), we just don’t have the money.  So we went for a quick overnight with our friends.

Our friends are wonderful people – of course they are, they ARE our friends after all!  They have a teenage daughter only one year older than our teen, and thankfully the girls get along GREAT.

They had a son who died three years ago, at the age of 15, a victim of depression that led to suicide.  They manage to get through each day, smile, and even laugh – they have to, they still have a daughter to love and raise.  But they clearly are not the same, and never will be, how could they be?

the sun shining through the trees on our walk

Visiting with them is grace.  There is grace we hopefully extend to them – that it’s ok to be “however” they are feeling.  They don’t have to pretend with us.  They don’t have to put on a happy face, but we also don’t trap them in sadness either.  They laugh with us, they love our children, they get on the floor and play with them.  And I hope that brings them joy.  But they also gift US with grace.  The grace of an invitation to spend time with them.  The grace to accept our children with all their quirks.  The grace of allowing us to be “however” WE are feeling too.

the waterfall

    During our all too quick visit, we enjoyed wonderful homemade soup and pizza, and a movie night complete with popcorn (NO cable or internet in the mountains!).  Our kids helped them make a yummy breakfast, we played games that everyone could play – and a trip to the mountains in the winter wouldn’t be complete without a wonderful walk in the snow.

the lake, frozen over and snowed upon

Within their community there is hardly any traffic, and certainly no sidewalks, so we could walk in the one lane roads the plow makes to get to the cottages.  There is a beautiful stream and small waterfall on the community property, as well as a lake where there is swimming in the summer.  It’s breathtaking during the summer, and we discovered equally so in the winter.  We visited all the sights and marveled at the beauty of God’s creation.

an angel in the snow AND in person

Because even though I am beyond disgusted at the amount of the snow we’ve had this year, and even though I KNOW that snow is the same everywhere, somehow the snow seemed more beautiful there then at home.