Friday, July 1, 2016

7 Secrets to Going On Vacation w/ My Autistic Son








People are always asking how we do so well on vacations with our severely autistic son.  They see our pics from the NJ Shore overnight getaways and pics from our week long upstate NY Lake vacation and marvel at how we do it.

Well I'm here to tell you that it is not easy.  It takes a lot of work and planning and mental strength and patience, but over the years we have gotten much better about it.  

Here's a few of our secrets.  Most of these secrets are more about the parenting aspect of things.  How to survive.  :-)  And most of these secrets pertain to our longer getaways.  The overnights we've gotten better about, but the week long getaways need a lot of...

1) Planning, Planning, Planning.  
We take a lot of stuff with us, particularly when we go away for that whole week.  For the weeks leading up to our trip our home office becomes wifey's staging area.  Here's a pic. 


And the place we stay has a kitchen so we bring LOTS of the king's favorite foods.  



Every year on Facebook I take a picture of our minivan trunk before we depart and it's quite hilarious how much stuff we bring for 2 adults, 1 kid, and 1 service dog.  Here's a pic from last year. 

If you look closely you'll see a toaster oven?  Yeah, we even bring our own toaster oven.  

Yes, we have a full kitchen in our hotel, but it lacks a toaster oven, and boy a lot of the king's meals are made in a toaster oven (hot dogs, chicken nuggets, waffles, etc).  

Lately we've been feeding him in the room before we head to a restaurant so that at the restaurant maybe he'll just watch a show on his ipad and let mom & dad scarf down a meal.


You can also see his big green bouncy ball in that pic of our minivan.  What you can't see is that the backseat is filled with the king's favorite books and toys.  Whatever they are at that moment.  And then when we get to the place wifey sets up his room with all the stuff to make it feel at home.



We also bring our own sheets.  One for familiarity, two because wifey gets skeeved out by hotel sheets sometimes, and three in case the king has any accidents.  We also put a sheet on the couch in the living room in case 

his majesty wants to lick the couch, he's licking our sheets, not their 20 year old couch.

Lots of planning goes into our week long getaways, and wifey does MOST of the work, but I do some which brings us to #2.


2) During the Planning Make Sure You Each Have Your Role.
Wifey does everything related to the packing and planning for our trips.  I have five very important jobs.  

(1) I'm in charge of gathering and packing all the king's medicines and our medicines together  


(2) I'm in charge of gathering & packing all of the toiletries -- soap, shampoos, toothbrushes and toothpaste, condoms :-), hair brushes, hair dryer, etc. 

(3) I get all the electronics together (Ipads, laptops, phones, cameras, dvd's) and make sure we have enough chargers for all of them.

(4) I pack the minivan with all of this crap.  Let's see another pic of our packed minivan...


(5) I do all of the long distance driving.  (wifey does most of the driving during our week away)

Those are my 5 jobs.  Wifey does everything else.  And lately we've been much better about trusting the other person to do their jobs without asking questions or second guessing each other.  Except that one year when I forgot the melatonin!!!!  OMFG!!  :-)











3) Familiarity 
Again, these are secrets that work for our kid.  So your kid might be different, but we stay at the same place every year.  It's not the fanciest place.  It's pretty down & dirty (hence why wifey wants to bring her own sheets), but it's familiar to us.  The king isn't one of those kids who freaks out when things aren't the same way every time, but over the years we've tried to stay in the same room every year.  Room 131.  It's a 2 bedroom efficiency and the king's bedroom is always the one on the right.  

It's nice to watch my son enter a place that he hasn't been in for a whole year and immediately know where everything is and know which room is his and what is expected of him.

4) Convenience
The other reason we stay there is that it's very, very convenient.  Our room is just steps from the lake.  I can be a bit of a cheapskate and years back I tried to save a few dollars by staying in a less expensive room that was farther from the lake.  However, with an autistic & epileptic kid who can have a meltdown, potty accident, or seizure at any given moment, it's really nice to be steps from our room.

5) Deal With The Kid That You Have That Year
My wife and I said to each other on one of our drives up to the lake, "it's like we show up to the lake with a different kid every summer" and it really is true.

And we try & structure our vacation activities around what kid we have that year.

For example, in the real old days, in 2009BM (Before Melatonin), we had a kid that would get up at the crack of dawn and stay up really late and couldn't stand being in our room/cabin.  So he would have us out all day long.  We'd be at breakfast as the restaurant was opening up.   We'd spend days at the amusement park because he wanted to be on the go all the time.  And we'd have to drive around for an hour at night to get him to sleep in the car before carefully transporting him to the room.

And lately since my son has matured he is a lot more mellow.  And is a lot cooler with just relaxing by the lake so that's what we mainly do.

And he probably sleeps too much while on vacation, partially due to being a teenager, and partially due to his seizures / anti seizure medication.    

So the past couple of years on vacation he's needed a late morning nap.

The first year that happened wifey & I got frustrated. "He's missing out on valuable sunshine and lake time!"

But last year we decided to respect his late morning nap and work it into our schedule. 


We try to do some stuff together before the nap (lake time, breakfast out, etc) and then give him every opportunity to nap when we get back. 

And during his 60-90 minutes of slumber we use that time to our advantage.  

I might go for a run while wifey watches him, or wifey might do yoga lakeside while I watch him
, or maybe we'll use that time to "made sandwiches" while he's napping (that's code for something :-)










6) Don't Compare Yourselves to Typical Families You See Around You / Deal With The Hand You've Been Dealt. 

The big village near where we vacation is a big throwback to an old days vacation spot. There's mini golf, arcades, ice cream parlors, etc. All things my son hates or is indifferent about. 

Some years we travel up with other family members.  

And after dinner the conversation always goes to "should we do GoKarts tonight or mini golf" 

Meanwhile my kid is yawning like crazy and annoyed that he's not in bed already. 

In the old days I would feel sad or jealous of all the stuff they were doing...all the stuff that my guy was missing out on...

But I guess I've matured (or my antidepressants are REALLY working) cuz the past two years I am fine with the fact that by 9:00pm the king is asleep and wifey & I are in our room in our PJ's watching "Everybody Loves Raymond" repeats on TV Land while some family are in the village at the arcade. 

I think I realized that I was the one who felt sad. I was the one who was jealous. My guy 
wouldn't like most of that stuff. So he really wasn't missing out on anything.

And the same goes for other families that we come across. 

Am I jealous of the father that I see going out fishing with his son at 6am?  Yes. 

Am I jealous of the families that I see that rent boats & go water skiing? Yes. 

But that jealousy only lasts for a few minutes whereas years ago it would have lasted for a few hours

I guess that's because over the past few years, I've come to the realization that fishing, water skiing, etc is not part of the hand we were dealt. We were dealt the autism & epilepsy hand.  And I've come to accept that and try to have the best vacation we can have. And do mostly things according to my son's likes and needs while once in a while being selfish and pushing him out of his comfort zone to do something we like, like a dinner out at a restaurant or fireworks. 


7) Remember.  You Are On Vacation Too!
You are on vacation too, damnit!  Put your feet up when you can! 


Throw your diet out the window!  Eat some bacon, barbecue some burgers, have some adult beverages!  And "make some sandwiches" as often as you can!  :-)

That's all I got.  That's 7 things that help us survive going on vacation with our 13 year old goof ball with autism & epilepsy.  

We'll be going away to the lake again the last week of August.  We shall see what this year brings and if I come home with any new secrets!

THE END





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!


7 comments:

  1. And there are a lot of people who would love your set-up.

    Recently on THINKING PERSONS' GUIDE I have been reading about communities which have been making more autism-friendly and epilepsy-friendly holidays.

    I especially appreciated Secret Five. "Deal with the King you have this year".

    Arren's love of Surfside Beach

    "Remember you are on vacation too!"

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  2. Great stuff - one requirement for us is WiFi for the Netflix streaming and computer games :-)

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  3. I am trying hard to work in #6. Our 6 year old autistic son is also non-verbal. I find it a little more difficult when traveling with friends and seeing what they are able to do with their kids. I hoe to get where you are eventually and some days are easer than others. I think it would help us. Find the same spot to go to each ear also. It might be fun for our 8 year old daughter also. Thanks for all the insight. Our car gets just as packed plus we use a cargo hitch on the back of our suburban.

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  6. Hello, I stumbled upon this blog as I was initially upset but reading your holiday post made me smile. And nod my head in "ahhhh it happens to you too" I have taken my son out for the day before. It was a nightmare to be honest. My son has ADHD and severe autism so he cannot stay still. We tend to stand out as my lads behaviour can be unpredictable. In fact my sister is getting married abroad to avoid him coming to her wedding. (The reason for the upset) I'm trying to see things from her point of view, but I guess I expect more from my sister.

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  7. Oh, I understand so much the melatonin story. These days I would rather forget to check passports but would ensure that melatonin is in my bag. BM epics are so fresh in my mind :-) We started giving it at the age of 2.5 when our sun would wake up every 30 minutes and never looked back. But getting prescription here in the UK is getting tricky :-(

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