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. 

Transitioning to Adulthood...NOT for the Faint-Hearted

Life in Riley World can be a hard thing to explain to others. Last week I was out for dinner and a movie with some girlfriends. I was bemoaning how stressed out I’d been feeling lately.

Today a friend forwarded me this article from our local newspaper. “It’s way too hard for families.”: Parents of disabled children fight for support.

The timing of this article was well...timely. 

When Riley was still in school, I kept hearing the stories. “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”

Surely “they” were wrong. There had to be something!  Nobody wants to believe "there is nothing out there".  I sure didn't. 

Parents of younger special needs children can often be heard saying “I can never die.” The worry of who will care for their children; who will advocate for their children; and where their children will end up can be daunting for parents.  

As special needs parents age, thoughts can turn to “I hope I can live just one day longer than my child.”

Unthinkable, right?? 

Sadly, if you have an adult-child who will more than likely require support for the rest of their lives…whether admitted or not, the thought crosses your mind.    

Riley will be turning 23 this June. Since he turned 19 we have been one of the families in this story. Applying for services/funding. Turned down. Advocating. Creating a new program with other families. Re-applying for services/funding. Turned down again. Tired. SO tired. A vicious and exhausting circle.

For the first time since Riley transitioned to “adulthood”, I am feeling beyond discouraged and frustrated. I am disheartened. It’s not a good place. It’s not productive. It’s not healthy.  

Not to worry. I have an appointment with my GP about upping my “happy” pills. When in doubt…up the meds.  
I kid.  Maybe.  ;) 

2016...A NEW Halloween Era Begins

Back in June, I posted this conversation between G and R on Facebook:

R: My birthday is finished.
G: Yes it's finished.
R: It's too early for Christmas.
G: Yes it is. When can you start your Christmas list?
R: I don't know.
G: How about October?
R: NO. That's Halloween.
G: Are you going to dress up as a pirate again?
R: No.
G: What are you going to dress up as?
R: Princess Peach.
G: Oh. Why don't you dress up as Mario??

R: NO! Princess Peach!!

G: But Princess Peach is a girl.
R: I WANT TO!!

This past Thursday was Riley’s Special O’s Bowling Halloween Night. R was over the moon to wear his new-found costume. I posted this pic on Facebook. That dress?? Ummmm...yea. My high school grad dress. Yes I kept it. Yes I know that was *cough* 38 *cough* years ago. Not sure which is more disturbing...the fact that I kept it all these years or the fact that Riley fits into it without any alterations...to the length or chest area. Oi.

Thanks to everyone for all the positive comments!  Many were also commending me for being such a good mom and how awesome I must be to let R dress up as Princess Peach. Trust me. I’m not. A good mom that is. Awesome? Perhaps just a little.  ;)

Here’s the thing…it was also brought to my attention that R has actually been pining to be Princess Peach since he was about 14. Yea. 8 years. See. Not so awesome. However…to be fair, this was the first year he has actually insisted on being Princess Peach. For the other 7 years, he has been happy as a pirate. Really.

And if there’s ever any doubt about whether or not I made the right decision letting Riley dress up as Princess Peach…all I have to do is look at this face. 

Happy Halloween from Riley World!!!

Let's Be Honest...Transitioning to Adulthood is Scary

A year ago I wrote a post Phase 2: Adulthood…“In Progress” and was excited to start sharing with you some of the plans we had brewing for Riley World: Adulthood.

And then…

I got all overwhelmed and did the old rocking in the corner, breathing into a paper bag thing.

That was a year ago.

Now before I lose any more of you, at least watch this video clip of R's fitness class (part of his new program). Guaranteed to make you smile! 

or Click here to watch the video.

Feel better??  Good.  

*Pats seat*  Come sit by me. I’ll even share my wine with you.

If you have a teen or are fast approaching the teen years, you are probably getting asked those “I-don’t-want-to-think-about-it” questions while plugging your ears and humming incoherently to yourself.

What happens when your son/daughter finishes high school and may not be ready or want to go on to a post-secondary institute? 

What happens if your son/daughter may not be ready for a paying job?

Am I right???  

*Grabs wine bottle*  Here…let me fill your glass up again.

I remember hearing “There is NOTHING out there!”

I remember thinking surely these people were exaggerating. There had to be something out there. Right?  RIGHT??

Well…there are programs out there. Only…the sad truth is there are not enough programs out there. And…what is available may or may not be appropriate, suitable or a good fit for your son/daughter.

So then what?!??!  

*Opens new bottle*  More wine???

Quick recap for you…

Four years ago this September Riley World started school for the last time.

Three years ago we took a much needed “Gap” year.  

Two years ago at a Transition Committee meeting I attended, another parent found a program on the Island that sounded like a good fit for Riley. The program is a family governance model called InclusionWorks! It is an individualized, age appro­pri­ate, community-based pro­gram started by a group of parents for their young adults with developmental disabilities.

In September 2015, after over a year of planning, organizing and an enormous liquor bill…we (a group of parents) formed an InclusionWorks! “grouping or pod” in our community.  

We all had the same goals in mind for our young adults…

Being a part of their community

Getting to know people in their community

Becoming involved in their community.

We started our 2nd semester in January. It’s been stressful and exhausting to say the least. But to see our young adults getting out there in their community in a meaningful way……keeps us motivated and the liquor stores in business.  

Coming soon...programming and the partnerships we have formed.