Re-Entry...a Rough Ride

After 11 nights away, re-entry into Riley World has been a little ummm…rough the past couple of days.

We usually only go away for 4 nights; 7 nights top. Unless it’s away to visit family or the occasional 10-day trip for special occasions. When I first told Riley, that we would be away for 11 nights, he was not impressed. His immediate response was “THAT’S TOO MANY!”  He eventually came around but in hindsight…I guess it was too many. Especially at this time of year.

The “ready to go home” scripting started around day 6.

“I DO have to STAY on vacation! I am NOT going home on December 18^th! I have x more nights to STAY on vacation.”

Oh...let me just add in here that on day 4, I had decided we would take an overnighter to Disneyland and Universal to break up our trip because Riley loves to see the Disney characters and his "girls" (from Despicable Me). Let's just say it was much more stressful than I had anticipated. And really...I'm not new here. I'll fill you in on the details in another post. 

So as soon as the wheels hit the tarmac…“It’s good to be home! Is it good to be home?  Yes it’s good to be home again!!”

He was so anxious to get home that he did NOT even want to stop at McDonald’s on the way home. As soon as we walked in the door…

FIRST…hat, jacket, shoes off THEN update visual schedule which
basically meant removing any and all PCS related to "vacation".

Next…unpack the suitcases. ALL the suitcases!

I remembered the last time he ummmm…helped me unpack so I was right behind him. Or so I thought. He had already emptied his suitcase and was just getting started looking for the rest of his things in the other suitcases when I walked in. I found the rest of his stuff and was ready to go about my business when I realized he was standing in the doorway just looking at me.

“Where’s my underwear?”

After a frantic couple of minutes, I realized he had already put all his clean underwear (which were in his suitcase) in the laundry. Trying to explain to him that we did not forget his underwear and the underwear he put in his laundry were, in fact, clean underwear and his dirty underwear were the ones in the plastic bags wasn’t going to fly with him. Nope. No way. Cue “mini”-meltdown. 

I say “mini” because as Riley has matured, so has his ability to cope with his stressors and express/communicate his feelings. Still…seeing him SO upset and trying so, SO hard to hold it together is hard. Really hard.

When Riley hits that point of no return…there is no reasoning that is going to happen. Talking “at” him (and that’s what it would be) is pointless. I have to let him try and “de-escalate” on his own as long as he is not causing harm to himself. So he yelled, he screamed, he slapped his hands against the walls, he pulled at his hair, he cried. But then…he let me hold him. After a short time, he calmed enough that he was ready to go occupy himself on his laptop. For a while, he was loud. Very loud. But in a way that we knew he was just releasing his emotions. 

Oh and just to clarify, it was NOT just the underwear that brought these behaviours on. That (the underwear) was, what is referred to as the "trigger" or in more user-friendly terms..."the last straw" of 11 days away from home. 

Thankfully by the next morning he was happy and excited to go on an outing with his group of friends.

And then……

The following day, there was a huge wind storm and our power was out for 7-1/2 hours!!! 

I’m going to stop here.

I’m starting to hyperventilate and it’s too early for a festive beverage.

The only saving grace…the power was on at the bowling alley for Riley’s Christmas Fun Night and his weeks and weeks and weeks of talking about..."On December 20th I'll see Santa at the bowling alley and what will he say to me? he'll say 'what's your name big fella?' and I'll say 'Riley Tucker' then he'll ask me what do I want for Christmas? and I'll say stuffies of Jenny and Charlie and Dory and Nemo, a new DVD player Sylvania with the new remote, Hotel Transylvania 1, 2 and 3 summer vacation 3 movie dvd collection, the Land Before Time 14 complete collection. That's what I want for." came true. Hallelujah. 

Reciting his list to Santa

The moral of this post…compromise on the number of nights we go away. Riley prefers 4-7 nights; this time it was 11.  Next time I’ll go with 10. 

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!  

Why It Can Be Stressful Going on Vacation

We LOVE vacations!! Well 3 out of the 4 of us do. We haven’t let that stop us though. Majority rules...right?? 

We had always travelled as a family unit of 4. Two parents, two children.

As the boys got older, in addition to our family vacations, G and I started taking “self-care” trips. What that really means is we started travelling separately with other friends so one of us would be home with the boys while the other was out having a carefree holiday. G on golf trips, me on ladies trips because we all know ladies trips are THE BEST!  

Now that the boys are…well…young men and J2 has once again left the nest, for the most part we travel as a threesome. Two parents. One adult son.

I mentioned on FB, in the almost 24 years, I can count the number of times G & I have been away by ourselves on one hand, give or take a finger. Well this past Friday night, G and I returned home from 3 nights away with 2 other couples. It was glorious! 

I know what you’re thinking…now that you’ve done it, you can do it again no problem. 

Ummmmm….not so fast Sherlock.

Two words.  Riley World.

Riley can not be left by himself. Ever. For safety reasons. So, we need to have someone come and stay in our house for the entire time we are gone. Other than family, it is not easy to find someone who Riley is comfortable with and who is comfortable with Riley. His brother and cousin are first choices but that is not always possible. Regardless of who we do find, it takes a lot of planning. A LOT!

And then there’s Riley’s stress.

Let me back up.

When I first started taking my self-care trips, G would be left to listen to R’s running dialogue of “She’s gone. She’s not coming back.” Throw in the occasional “She’s dead.” and well...you get the idea. Yes, these were all lines from videos he used to watch but still, not easy to listen to over and over and over again.

When I would return home, it was like a knife to the gut. Cue strong feelings of guilt.

Thanks goodness I am thick-skinned. I compare those feelings to giving birth…eventually you forget the pain and do it again. 

And...I was luckier than G as Riley never seemed to go on and on quite so much when G took his trips. Obviously, I'm Riley's favourite parent.

Now-a-days it’s the constant pre-vacation dialogue of “You are going away for 'X' nights. You DO need a vacation. Do YOU need a vacation? etc. etc.”

There are also the post-vacation reminders.  This message from J2 when we were on our way to pick him up.

If he’s awake and waiting at home, often times he will pace and wait by the window.

I messaged Riley and after some back and forth…basically got hung up on if that’s possible when texting.

The following day, every time Riley saw us "You two are back yesterday!" in his happy voice. 

The first day back to his program, I got this message…

So yes, we all managed just fine which bodes well for another trip down the road.

Oh…let’s not forget there was the one t-shirt that was ripped apart. But hey…only one.

That I could find that is. 

Cruising 2018 is a Wrap!!

Hard to believe it’s already been 2 weeks since we got home from our cruise.

In that time, we’ve had snow at our house twice and I’ve experienced for the first time ever…winter in Winnipeg, Manitoba (aka Winterpeg) where the temp was -24C/-11F with a wind chill temp of -31C/-24F. Downright brisk. 

I thought I would wrap up this vacation diary with some pics for those of you who do not follow Riley World on Facebook.

Part I:  Orlando

Riley could not wait to go see Gru, Margo, Edith and Agnes (characters from Despicable Me) at Universal Florida. If you remember, Edith was not at Universal Hollywood when we were there a year ago. She was well…ummmm…“sick”. The promise of Edith at Universal Florida was the incentive we used to get him excited about this trip. I know what you’re thinking…what if one of them was not there???  Not to worry, G was prepared to don a costume if need be.

See…EXCITED!!!   

So excited that for the next 3 photos he looked like this...

Luckily we were able to see the characters twice that first day and have photo-ops with all them.

And of course, he had to hug each of the girls both times.  

If there was ever any doubt that the hundreds of dollars spent was worth it…just look at that face!!  

Until…

Day 2. 

We missed the first photo-op. They came out early and by the time we got there, they were leaving. To say Riley was disappointed would be an ummmm…understatement. I may have even pulled the “A” card to no avail. *sigh*  I get it. I really do. But just to make sure we would not miss them again, we went to Guest Services.

Guess what??  It was a Harry Potter special event weekend so gosh golly…there was going to be a special parade instead with NO PHOTO-OPS. I may have gasped. No…no…I’m pretty sure I gasped. I think I also broke out into an even bigger sweat. Not pretty. 

The young man did all he could to see if there was a chance of getting a photo-op but no luck. After trying to explain to Riley that it was not to be and “it sure was lucky we got to see them TWICE yesterday”…I did what any other parent would do in that situation. I told him we would go buy him the Land Before Time Complete Collection for the 14th time. Yup. I exaggerate. Only slightly. But that’s what I did. “Incentives” have not always worked in Riley World but now that they do…it’s a wonderful thing.   

Part II:  Cruising the Caribbean

Riley’s dream vacation would be to stay in a hotel room/stateroom for the entire trip. Come to think of it…it really is a wonder that we travel at all. Yet we continue to. I could say it is to expose Riley to different places and activities but let’s face it…it’s mainly because G and I like vacations.

There were DreamWorks Characters on board our ship.

Being an "Autism-Friendly" cruise line, they even brought in R's udon from the Japanese specialty restaurant that was next door to the dining room for his dinner every night.

We went kayaking in St. Maarten. Well...some of us kayaked and someone got to relax. 

Over the years we have learned to compromise. Some “activities” we do together, like meals (yes believe it or not meals are included as an activity) and others G and I will take turns so Riley can have his down time in the room. Not always the most relaxing vacation but it works for us. Just one of the reasons G and I also like to take our separate vacations.

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. 

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