Travelling with Adult Autism

Most of our friends are slowly becoming empty-nesters.

Most of our friends are starting to travel extensively to far away places for long periods of time.

Most of our friends are travelling as a pair. 

We travel as a trio for the most part. I refer to Riley as our “third wheel” (spoken with love and affection of course). My friend’s term of endearment for their third is “ball and chain”. I’m stealing that from her because I love it and I think it sounds more ummm…endearing than third wheel. 

The last couple of trips we have taken as a trio, I have been more aware of things that typically a person would probably not notice or even have to think about unless you are travelling with an adult-child with special needs. Things that have just become our “normal” in Riley World.

Having to explain to airport personnel/security for the umpteenth time that “He has autism” when they comment that he should be carrying his own passport/boarding pass etc. In my inside voice I’m saying “Sure…I’ll let him carry his own passport and let’s see how smoothly THAT goes.”  Just to clarify, we have never had a bad experience…just gets tiring sometimes. But then there are the times when Riley will answer questions, ALL the questions repeating the person’s name (because he has noticed their name tag) EACH AND EVERY TIME and it brings a smile to that person’s face. 

Making sure there is enough “down time” throughout the day so Riley doesn’t become “unglued”. This means G and I take turns doing things because Riley can not be left alone. I will admit, this also works in my favour for those times when A/C is more desirable than walking around in +90F temps. 

Walking down the street (not crowded AT ALL) and noticing Riley is getting waaaaaay too close to the people in front of him and you know he’s not going to slow down or back off. Can you say “personal space”?!?!?  He won’t run into them, he’ll just keep “on their heels” (and probably in the same step if at all possible) with them. And no, it would not cross his mind to go around them because he’s much too “polite” to pass anybody.

Having a thick skin so when you’re in a crowded space and he starts getting agitated and talking loud and saying things like “SHUT UP YOU STUPID LADY!  I’M GOING TO RUN AWAY!!” you take it in stride.  Sure beats when he used to yell “DON’T HIT ME!” 

Still, we consider ourselves lucky to be able to travel at all. 

Our criteria is really quite simple. Familiar, routine and under 3 hrs air time is optimum. 

Our destinations may be the same most of the time but who can pass up a 4+ star hotel/accommodations for next to nothing. 

But most of all…our tour guide has the best smile EVER!  

Homeward Bound

Part I:  The Flight Home

In Riley World, when it’s time to go home...it’s time to go home!  As in RIGHT. NOW!! 

From the moment he got up on our last day until the wheels hit the tarmac, whenever I glanced his way the “going home” dialogue was in full force.

R:  I AM on vacation. Am I on vacation? I need to STAY! I DO want to stay on vacation.

Me:  You do??  *of course I knew he didn’t but I throw in the occasional clarifying question*

R:  NO!  I CAN’T stay on vacation! *slight pause*  It’s not time to go home yet. Is it time to go home yet??

Me:  Yes. We’re going home t…

R:  What time? I DO need to go home.

Me:  We’ll go to the airport at 4 o’clock.

R:  What time is it? 

Me:  8 o’clock. 

R:  I DO need to stay!  I can’t go home yet. 

You get the gist, right???  Oi-vay.

My ears were nearly bleeding and my eyes were sore from having to avoid eye contact for the nearly 8 hours before we got on the plane.

Usually Riley likes to watch/play games on his iPad and can’t wait to get “puppy” out of his backpack as soon as we are seated. Not so this time. Pretty sure he was thinking ahead about getting the hell off the plane and didn’t want to worry about packing up his things so decided it was best to just keep everything packed. 

So instead he opted to look out the window. 

He just sat there and stared out the window. Into the darkness. Pitch black. Nothingness. Pining away for home.

There were a few bouts of almost tears with “I just wanna go home now. Can we go home?” which I will admit pulled at my ice cold heartstrings. Thankfully he managed to fall asleep about 2 hours in.

As soon as the wheels touched down, "Now we're back. It's good to be home again. Are we home? We're home." and at that moment, all was right once again in Riley World. 

Part II:  Home Sweet Home

I hadn’t planned on unpacking our bags that night. It had even crossed my mind to leave them in the entry hall because the thought of lugging them upstairs…

Riley thought otherwise because of course he would.

Two carry-ons and one suitcase were on the bed.

This bag weighed 47 POUNDS!!!

R had managed to wrestle the bags upstairs without so much as a bump, thump or grunt. And here I thought he didn’t have any muscle strength.

I know who’s going to be bringing in the groceries from now on. 

The Neverending Flight...

We just got back from a 10 day vacation late Sunday night. Four days in Florida and a 1 week Caribbean cruise. Our airport has an Autism program so check-in, security and customs all went smoothly.

The plane was a 787 so very spacious and in-seat monitors with movies that R likes! BONUS!! 

We even managed to leave on time. Say what??? In 5-1/2 hours we would be in sunny Florida. We must be living right.

Until…

An announcement…

*dialogue is not verbatim and times are approximate*

About 30 minutes into our flight…

Captain:  I’m sure some of you are aware there is a problem with the lavatories. We are working on getting them fixed and will keep you updated. In the meantime, please refrain from using them.

15 minutes later…

Captain:  We are trying our best to get the lavatories up and running remotely and are in contact with our maintenance people. They are doing their best and we will keep you updated.

Another 15 minutes later…

Captain:  Well it looks like we are not able to fix the problem remotely so we are going to have to turn back as it is too far to continue without lavatories. In the meantime, if you need to use the lavatories you may do so but you will not be able to flush them.

Yup...that’s what he said. "NOT BE ABLE TO FLUSH THEM!" Or words to that effect. Pretty sure everybody on that plane was thinking about having to go to the bathroom at that point. So an hour+ into the flight we had to turn around and head back to where we started from.

Two plus hours later, we were back on the ground at home.

Captain:  Maintenance is here and we should hopefully be on our way in about 30 minutes.

We wait…

Riley:  *on repeat*   The plane went the wrong way!  Oh no.  But I DO want to go home.

And wait some more…

Riley:  *adds to the repertoire*   I’ll just go home. Can I go home now?

Me:  *begins avoiding all eye contact*

30 minutes later…

Captain:  Thank you for your patience! We have fixed the issue and are now waiting for a new flight plan. Shouldn’t be much longer before we are on our way.

10 minutes later…

Captain:  Folks, I’m afraid we are having some issues with US Customs allowing us to leave the gate. We are working on it and will keep you updated.

5 minutes later…

Captain:  Unfortunately, the US Customs Supervisor on duty will not allow us to leave as they consider the plane to be *compromised (can’t remember the exact word he used) as maintenance had to come on board. This usually isn’t a problem but I’m afraid everybody is going to have to get off the plane and proceed through Customs as if you have arrived from the US. Your bags will be taken off the plane and you can claim them once you have cleared Customs. Then head back to check-in, and proceed through security and Customs. The new departure time will be 3:45pm. We apologize for the inconvenience.

By this time, it was after 12pm. 

Riley was NOT a happy camper!

I wanted to figure out where to get something for R to eat. G wanted to figure out how to get us through check-in quickly. Guess who won? 

Finally we were up and on our way…again. At about the time we should have originally been arriving in Florida.

Riley:  Now we’re going the right way!  Oh bother. I’m sorry. We went the wrong way.

Now normally I do not drink when flying. Really. However, at that point I decided perhaps some alcohol was in order. To go with the complimentary sandwich. That was for dinner. Without chips. I like chips with my sandwich. They offered me a Kit Kat instead. A Kit Kat is not chips. 

What should have been a 5-1/2 hour flight took us over 12 hours or almost 15 hours door-to-door. But we made it. And you know how there’s always THAT vacation story. This will be ours.

A Leap of Faith

I’m hoping to blog more this year. Considering I only blogged 3 times last year, shouldn’t be all that difficult to beat that number.

In just over a week, G, Riley and I are going on a cruise with 3 other couples to celebrate some upcoming 60^th birthdays. No…not mine. 😒

This will be Riley World’s third cruise. After our trip home from the last cruise...we did not want to relive the trauma and were able to book direct; non-stop flights both ways. 

A few things about cruising:

• Did you know they do not like you to cook in your stateroom? 
• Did you know that if you take any cooking apparatus (ie hot pots) on board they could get confiscated until the end of the trip?
• Did you know that their screening for said pots is not 100% accurate?  How do I know this?? Two years ago, being the seasoned autism parent, I packed 2 hot pots in 2 separate suitcases. Long story but one made it through, the other did not. If only I could remember which one made it through.  

This time, we are cruising with Royal Caribbean: the first autism friendly cruise line. While we have had nothing but positive experiences in the past, I am curious to see what other types of accommodations there might be since previously, staff/crew have always gone above and beyond. Well…except for the cooking in the stateroom part. Trust me, I understand why you’re not supposed to. Really. I get it. But still…  😉

A couple of months ago as I was researching our ship, I noticed they had a Japanese restaurant on board that served udon. That's right...UDON!  Riley eats udon!!  Riley LOVES udon!!!  I may not be able to cook his noodles in our room but we could go eat his “udon with no seasoning” multiple times a day!!  

Here’s where the Leap of Faith comes in.

After many inquiries and reassurances that the crew will do their best to accommodate R’s ummmmm dietary needs…I have decided *gulp* not to pack a hot pot for the FIRST TIME EVER! *gasp* 

We are going to eat all our meals outside of our stateroom. *starts to feel short of breath* 

We can DO THIS right???  RIGHT????  *begins coping strategies* 

I…I…I’m okay with eating Japanese multiple times a day for 7 days.

Sure am glad we bought the “beverage package”. 

via GIPHY

Foto Fun

Whenever I am on Riley’s blog FB page I can’t help but smile at the cover photo. Now I could leave you hanging or make you go to FB to see what picture I’m talking about but since I update the cover photo every couple of months…here’s the picture I’m talking about. :D

This picture was taken on our holiday this past February when we went cruising in the Caribbean. Now I’m sure you have heard the saying “a picture paints/is worth a thousand words”. I mean doesn’t Riley look happy? Well...relatively happy. And maybe even like he’s having fun?? Well my friends…in Riley World there is much, MUCH more to a picture than what is visible to the naked eye.

One of my early posts was “Autism as a Second Language” where I gave an example of one of the most challenging aspects of Riley World…language/communication. Communication is more than “talking” or “words” but for this post I am just going to give you another Riley World example.

First let me explain that this photo-op was not your usual “stick your head through the hole” setup which, as you can see below, Riley is quite comfortable with…ummm...now.

Oh no. This particular one was on a raised cement platform/stage and instead of holes...you stood behind the stand and aligned your head with a body. Not quite as easy as one might think and definitely "Something Different"!!  No one was around to take a picture of the two of us. No one was around for R to model after. Riley was up there on his own. He was not impressed to begin with so in order to get this done as quickly as possible I decided to direct him with verbal instructions. And as it turned out...many, MANY verbal instructions. TOOOO many verbal instructions. Verbal instructions do not work well in new situations in Riley World. Really....I am not new here.

The heads on the frogs actually dropped down backwards to allow for up to 4 people. 

Instruction 1:     “Go stand behind the board Riley so I can take your picture.”

 This should have been my first clue that verbal instruction was not a good idea.

Instruction 2:      “Riley…go aaa-round (motioning with my arm) to the back.”

He stopped just short of going around to the back. SO not happy!!

Yes…I know I should have just gone up there and physically helped him go behind the board. 

But I wanted to get this over with quickly. ;) 

Instruction 3:     “Riley…keep going aaa-round (again motioning with my arm with much bigger

                        sweeping motions). Go BE-hind the picture.” 

He made it back there but stood a little off to one side. 

So...MORE verbal instructions (4, 5 AND 6).

 Finally R was lined up with the empty frog. 

Only...he was about 3 feet back. 

Instruction 7:     “Riley move forward (motioning with my hand). Keeeep coming. (8 and 9)”

Instruction 10:     When he was finally in position…”Riley put your head through the opening.”

And that’s when this happened...

He bent down to try and put his head through the opening just. as. I. had. asked. 

Only....there wasn't an opening. 

He makes me smile! :D

Oh....and why do prepositions have to be so hard!

We Went Cruising......Part 2

We haven’t always been able to travel by air. In the early years of Riley World, vacations were spent in the mini van driving for hours on end…prior to built-in video screens…with only read/sing-along cassette tapes blasting through the speakers. If I never hear Hakuna Matata or Circle of Life again I’ll be okay with that.

Travelling by air has been a process and continues to be a process. Different/changing security measures mean no routine. No routine means the unknown. The unknown means anxiety/stress for me…I…I…I mean Riley.

Now remember how I said I was able to schedule 3 flights (all under 3 hrs) with 2 layovers between 2 and 2-1/2 hours and it worked out great going down to Fort Lauderdale? Sadly the same options were not available for the trip home. Oh and to top it off....the nasty bug that had gone through both my sister's and my family had caught up with me on the last day of our cruise. I felt like I had been hit by a Mack truck. :(

Our trip home went something like this:

·         Disembarkation time was 9am.

·         Wait (30 min) for shuttle to Miami airport (1 hr drive).

·         Arrive at airport 3 hours prior to departure.

·         Heading through Security was when the fun began. We have the taking off your shoes part; putting things in the bin part; and walking through the sensor part down pat now. The walk-in screener is ummmm still a work in progress. We both forgot about his sunglasses so R needed further “processing”.  
Note:  TSO – Transportation Security Officer

TSO:           May I see your glasses please?

R:               *Leans into the TSO and looks into his glasses* 

TSO:           *confused look*

Me:             Riley can you give the man your sunglasses.

R:               *grumbling takes them off his head and hands them to the TSO*  HERE.

TSO:           Thank you.

Me:             He has autism.

TSO:           *nods and turns to me*  I’m just going to have to touch his ankle.

Me:             OK.

TSO:           *bends down to pat down his ankle*

R:               HEY! YOU’RE TOUCHING ME! STOP TOUCHING ME!!

TSO:           You’re fine to go. 

·         Pretty sure our gate was in a previously ‘set for demolition but temporarily reopened’ terminal. Only redeeming factor was the Pizza Hut Express for Riley.

·         Our ~3-1/2 hr flight to Chicago was delayed by 30 minutes. We only had a 65 minute layover in Chicago.

·         We had hoped to get a bite to eat in Chicago before our next 4 hr 40 min flight. We were all hungry. By the time we landed we had to go directly to our gate to board. We had to go by restaurants and a great looking food court. We had to settle for the Inflight Menu. *sob*

·         We were the last to board and then waited at the gate for 40 minutes waiting to be de-iced. AUGH! We spent an additional 15 minutes on the tarmac.

·         At about the 3 hr mark R started to become unglued. First it was because I had changed my watch back to our time zone. “Your watch is wrong!” Then he realized it was after 8:30 therefore it was time to change into his PJ’s. “Where are my PJ’s?” Finally almost in tears “I just want to go home.” *sigh*  Me too buddy...me too. He thankfully nodded off until just before we landed.

·         By the time we landed R was done. I was done. We were all done. We were at 14+ hrs since we had left Florida. In Riley World 5-10 minutes of waiting can seem like an eternity. Here’s a little snippet as we waited to get off the plane.

R:    There’s lots of people. *totally annoyed*

Me:  Yes. We need to wait patiently.

R:    Like at Christmas.

Me:  Yes, like at Christmas.

R:    Peeeeeeeople!

At this point 2 of the 3 people in the row ahead of us took a sideways glance at us. J2 later told me that an elderly couple 2 rows in front of us looked back and scowled. After 15+ years in Riley World, I have become better at focusing on Riley and ignoring “the lookers”.

Me:  *I say nothing and place my hand on R’s knee.*

R:    I’m going to PUSH THE PEOPLE!!  *arms outstretched; tenses face and grunts as if pushing*

Me:  We have to wait our turn.

R:    TAKE TUURR-UURRNS!!!!

And then…R started scripting scenes from Caillou (the bane of my existence). I was beginning to crack and remember thinking “LET'S GO PEOPLE!! HE COULD BLOW AT ANY MINUTE NOW!”  I can not remember much else. I was delirious from popping flu/cold medications.  

·         One final layover before our last flight home. On a prop plane no less. While waiting to board I remembered I had yet to pull out my “secret weapon”. What was I thinking?? Why had I not given this to him on the almost 5 hour flight???  Clearly…I was not thinking…ummmm cold medications…haaalloooo. I pulled out a copy of R’s newest obsession the Sleepy Kitten board book from Despicable Me and with that…a sense of calm came over Riley World. He had something to focus on and managed the 75 min flight home without a yelp, screech or grunt...that I was aware of. I was ummmm pretty much passed out for most of the flight.  

As we landed at our final destination 17+ hours later, R was all smiles and said in a most relieved voice “We're home. Are we home? It’s good to be home again.”  Yes Riley…it is good to be home. 

Did you know there is a TSA Cares Help Line for Travelers with Disabilities and Medical Conditions?  There is. Be sure to check it out before you travel.

We went Cruising...

I have been meaning to update you on our latest adventure. Riley World went on a 7 day Caribbean cruise with my sister and her family and G’s brother and wife. That was 2 weeks ago.

Then I got sick. For a week. And I lost my prescription glasses on one of the flights home. So I couldn’t see. Now I feel like it may be too late. Or not?!?! So perhaps I will just give you the highlights. With photos of course. In semi-point form (after all some things do require a little explanation).   

We left at the crack of dawn (it may not look like the crack of dawn but we had to leave for the airport at 5am so work with me here) on a cold and rainy day. What better time to head south.

Three planes, two layovers and 12-1/2 hours later we made it to Fort Lauderdale unscathed. Riley was a real trooper. I was able to schedule 3 flights (all under 3 hrs) with 2 layovers between 2 and 2-1/2 hours (just enough time to get something to eat and stretch our legs). It worked out great!

Our home for seven nights.

R got all settled in and never wanted to leave. Ever. As in he would have preferred to stay in the stateroom if we let him.

 BONUS:  R got to sleep on the couch.

We did convince him to go to the pool/hot tub. Once. Maybe twice.

It was usually very busy around the pool so we opted to lounge around on the upper decks.

We visited 3 different ports. We were unable to dock at our last port due to sea swells.

Cozumel

Cayman Islands

We had to take a Tender to shore.

Jamaica

The Cousins, Riley and J2

The trip home was a little more ummmm eventful. I will leave that for another post along with the pros and cons of cruising with Riley World. Let's keep this post all happy, happy shall we?  :D

Is it "MAD" this weekend???

Remember last year I decided to rename the upcoming "holiday" on Sunday to "MAD" - Mom Appreciation Day?  No???  Oh.  Well I did.  You can refresh your memory here.

When the boys were babies/toddlers I felt it was G's "duty" to shower me with gifts. After all...I gave birth to two more heirs; provided him with at least twenty more years of parenting; and oh...never mind.

Thank goodness for preschool. Preschool teachers are Saints!! They have the patience of Job twice over. There was no way I could ever, EVER do crafts at home with the boys let alone glue macaroni and holly onto a paper plate then spray paint it gold. A 1996 and 1997 Christmas highlight. And let us not forget the juice can pencil holder. Seriously though, those were THE best presents EVER!!!

Elementary school brought poems, cards and artwork.

J2 drew this. I had longish hair back then.
And apparently a very looong neck.  :)

Then came high school and the tribute to me stopped. Abruptly. WTH! They really need to build that into the curriculum. 

When J2 was in grade 11, he surprised me with this:

I know. Awwwww. If you need to go get a kleenex I will wait. *whistling*  As I was saying that was in grade 11. Nothing since. Thus the beginning of my Mom Appreciation Day campaign. 

So why am I writing about this???  Well this year my sister and I decided to grab one of those last minute deals and will be spending the weekend on a relocation cruise. No spawn. No spouses. Just us moms. Cause we deserve it damn it!  

Bon voyage and Happy MAD!!!  

10 Amazing Memories from a Not-so-Distant Past...

“Ducky” who blogs over at Batcrap Crazy picked this week’s Monday Listicles topic and what perfect timing! Having just returned from a girls getaway to sunny Palm Springs, California last Sunday, I decided to start writing my list as soon as I got back. Too bad that meant missing out on Bridget’s topic "10 Firsts". Hey…the ol’ memory just ain’t what it used to be so had to get to it while things were still fresh in my mind. 

Of course a weekend away with girlfriends I have known forever (1 sister; 2 from elementary school and 1 from high school) would mean nothing but Amazing memories…good and uhhh some not-as-good. 

1.      Even though our first flight was delayed on the way down…with no spouses or spawns in the picture we were footloose and fancy-free.

2.      Even though we would have missed our connecting flight…thankfully it was delayed too! Unfortunately by
1-1/2 hours. Until 12 midnight. On a weeknight. Well past our bedtime. Yes we are getting old.

3.      Even though none of us are real beer drinkers…we could not resist buying the 24 pack of baby Coronitas. Ole! 

4.      Even though we still love to go shopping it is no longer about who buys the most…it is now all about who buys the most for the least amount of money. Call us thrifty but whoever wins is one step closer to auditioning for TLC’s Extreme Cheapskates.

5.      Even though my girlfriend likes her pool warmer rather than cooler…95°F was even too warm (ya think?!?) for her.

6.      Even though it was a girls only weekend…rushing back from dinner to watch Grey’s Anatomy at 10pm is considered an Amazing memory. Personally I could not stand the excitement and went to bed just after we got home. It had nothing to do with the Happy Hour portions of alcohol they served. Welllll……maybe. Just a little. OK. It was the wine.

7.      Even though my girlfriend just about poked her eye out on our first night out and could not open it for the rest of the weekend…she still had the use of both hands. I was not so lucky. Vegetable peelers can be nasty and my right thumb was in a bandaid dressing for the rest of the weekend AND more! Just sayin’...

8.      Even though we like to think we are as energetic as we were in our younger years…now at 11pm we are ready for bed rather than ready to go out. 

9.      Even though we have all celebrated our golden birthday…we were keen to have a go at a game of Bum Darts. NO not out in public. Paleez we still have some dignity. We thought Loonies would be a better idea as opposed to quarters for fear that we would never ever see those quarters again. HA! Luckily we never had to put those to the test. After 3 rousing games of pool we were too tired and decided to race each other to bed instead.

10.   Even though our lives have gone in different directions...when we get together, nothing has changed and THAT is pretty AMAZING!!!

Be sure to head on over to Stasha's and check out what everybody else came up with.  Enjoy your week!