Mother's Day is Coming

Ever since Easter was considered “finished” in Riley World, R has been repeating his annual Mother’s Day dialogue.  “Next is Mother’s Day. I will make you a card for Mother’s Day. Will I make you a card??”

Today at lunch it sounded like this…

I never get the card he keeps insisting he will make me unless I remind him on Mother’s Day, in which case he scrambles to make one and it looks something like this... 

2016

2017 - If I'm lucky, they make something in his group. 

2018 - Back to last minute the morning of Mother's Day. 

2019 - Cards made in their group.

Don't get me wrong. I LOVE the hand made cards Riley makes me. I especially love how he signs them...you know, just I case I don't know who Riley is.   

My friend posted this on Facebook the other day. It made me laugh. I decided a friendly reminder to J2 might be in order. 

This is how he responded.  

Guess I’m not getting anything from him.  

Christmas 2019 is a wrap…

We’ve had company staying with us since Christmas Eve so we have been busy enjoying the holiday festivities and I have been off of social media for the most part.

Not to say there have not been any worthy posts. Oh…there have my friends. Lucky for you, I thought to take pics. 

So to recap…here’s how Christmas 2019 went down in Riley World in pictures…

J1 and J2 spent the night so they would be here to start “opening presents” promptly at 9:30am. Both boys were out celebrating until the early hours of the 25^th. One of them was genuinely excited. The other two were genuinely faking it.  

By 9:58am, Riley had disappeared upstairs with his stash.

By 10:00am, J1 and J2 had disappeared back to bed.

J1 was occupying R’s space downstairs. Riley made it perfectly clear that he was not thrilled. “How many nights is J1 staying?  He’s STAYING isn’t he.”  We tried to assure him it was only for the one night. 

After brunch J1 went downstairs to get packed up and found this…

Not unusual for Riley to put things “back to normal”.

I guess it was past check-out time because R had moved all of J1’s things into the bathroom. 

Unfortunately, Fred got sick and we had to play musical beds on the 27^th. The change in routine started the countdown to when they would be leaving. “How many more nights are they staying? 5 more nights??” followed every morning since with the number of nights. Being tactful is not a Riley World strong suit.

Last year we negotiated leaving the tree decorated until January 1^st and it worked!  So, this year I was pretty confident that he would leave the tree decorated until January 2^nd (after our friends leave).

We woke up on the 29^th to this…

Not undecorated but not quite decorated either.

This morning (December 31^st)…

I guess all the changes were too much after all. 

From our family to yours, may 2020 bring all things good...health, happiness and love!

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. 

A Year in Review...

Wow…can’t believe I didn’t blog once in December!!  Lots of little things went on that I posted about on Facebook but didn’t get around to sitting down long enough to blog.

So to wrap up 2016, I thought I would treat you to a “Year in Review” post with some of the highlights and ummmmm not-so-high-lights of our year.  

Let’s see…where to begin… 

We had a few more “Firsts” in Riley World!  He participated in his first, multi-day Special Olympics Basketball tournament; ate a grilled cheese sandwich WITH THE CRUSTS ON and attended his first concert to see J1 perform in Las Vegas. Go Ri!!!  On a, less happy note, I restarted Operation IFO with the introduction of a cheese quesadilla and he had another EEG which still showed seizure activity soooo...continuing with the meds it is. By far, the biggest highlight of Riley World was Halloween. Have you ever seen a happier Princess Peach in your life!!

J2 moved out in the spring. I thought I would really, really miss him. I did not. Well. Not as much as I thought. :P  Except perhaps this past month. 2 words. Advent calendar. Not to worry…he is planning on moving back home in the coming year. Not sure how I feel about that. I was getting used to being able to see the entry hall floor free from all his shoes. 

J1 is still enjoying his life on the road and making music with Brett Eldredge. Best gig ever...touring and opening for Keith Urban this past year. Worst fail ever...not introducing ME to Keith Urban.  :O

I had a less than stellar start to my year. I made the decision to do the #LosetheBooze Challenge in February. Yea. WTH was I thinking?!?!?!  I did not enjoy it. AT. ALL!!! One thing is for sure…I am not getting wiser as I get older.

However, for the first time EVER, I did not have to listen to Riley muttering away the “THE CLOCK IS WRONG!!” in November. G & I managed to sync all the clocks for DST. GO US!!!

G continued to work on our ensuite shower for the 4^th year in a row. I'm going to leave it at that. 

From our family to yours, may 2017 bring you good health, much happiness and laughter with friends and family and of course, lots of memory-making adventures!!!  Cheers!!

"Joy To the World"

Do you remember the first concert you ever went to?? 

Mine was Three Dog Night.  Yes.  I'm THAT old.  

Joy to the World indeed.

I can’t remember how old I was (early teens?!?) but I do remember getting shoved and pushed and praying I wouldn’t get separated from my friends because the chances of ever running into them again…slim to none. There were no reserved seats. It was a free for all. Pot-smoking, cigarette-smoking and who knows what else people were smoking…were right out in the open. And by the time the concert was over, there was a smoke cloud from floor to ceiling. I can even remember the ringing in my ears afterwards…pretty sure I suffered some hearing loss too. Ahhhh…the good ol’ days.  :P

Now Riley can be very sensitive to sound. VERY sensitive.

When R first started school, he could not tolerate the noise of a school assembly. 300+ students/teachers in an echoey gym??  Nope. Wasn’t going to happen. 

So our Fairy Godmother had the daunting task of easing Riley into a cacophony of excitable children laughing, talking and settling into place. She knew how severe his sensitivity was to sound and came up with strategies that would enable Riley to gradually sit alongside his class mates.

One of her strategies was headphones. But because noise-cancelling headphones were not readily available…she improvised. I like to refer to those days as the “Princess Leia” era. 

She found a pair of over-sized headphones (imagine industrial size headphones) and cut off the cord. The first time I saw Riley walk into the gym…I was ummmm…perplexed. You see…I was still at the “I want my child to ‘blend’ in as much as possible stage” and those headphones??  Well…let’s just say R definitely did NOT blend in. But…with the prequel trilogy having been released around that time…"I" persevered. 

And here we are over 15 years later. Attempting a music concert of all things, in an arena large enough to hold 18,000 people!!  WTH was I thinking?????

This. This is what I was thinking…

Yup...that's R's bigger brother J1 playing the guitar. 

G recently bought a pair of noise-cancelling headphones so we decided what better time to give them a try with Riley. 

I think R may have even managed to look up from watching Madagascar on his iTouch to catch a glimpse of J1 on the big screen. He didn’t last much longer after the intermission but I’m still calling this a HUGE win!!!  

What was your first concert???  Help me out here...let's hear from the pre-2000 crowd at the very least.  

It's Riley World's Birthday!!!

I haven't exactly been keeping up with my blogging these past 2 months and I'm not so sure I would've blogged last night if it wasn't for a certain someone's birthday today. 

We've been building up to this day since Mother's Day was declared "finished"...right after he gave me the card G strong-armed him into making me. Before you judge let me explain. Riley had been talking about making me a card for Mother's Day for at least a month prior and sometimes you just need to make good on your promises. :) Here's what he came up with...

Yea.  Not exactly Hallmark quality but a Riley World creation...priceless.  

With Father's Day just 2 days before R's birthday, I had a little more pull when it came to him "making" G's card because as with all things Riley World...once the card is given, the occasion can be declared "finished" and we can move on to the next event. Mainly Riley's birthday.  

Oh...here's G's Father's Day card. 

In case you couldn't tell, that's G and R on the left. Although it's pretty obvious since he drew it to scale.  

I had a look back at the blog/FB posts I had written on Riley's birthday over the past 3 years so as not to repeat myself about how he has changed our lives for the better; made me a better person; blah, blah, blah.  ;)  I kid. Seriously, what I wrote last year for his 21st Birthday...still holds true. 

So today for Riley's 22nd birthday, we will be doing exactly the same thing we did last year and the year before and the year before that...going to his latest favourite restaurant with the family. 

He will have exactly the same thing he had last year and the year before and the year before that...2 bowls of plain udon with "no seasoning" and a C-Plus Orange Pop with no ice. 

He will open exactly the things he wrote on his birthday list and will be as excited and as happy as if he won the lottery. Because that's what makes Riley World tick. Exactly the same thing year after year after year and who's going to argue with this face...

Happy 22nd Birthday Riley!!!

It's MAY!!!

Cartoon Credit:  www.adriennehedger.com

When I got up this morning the first thing Riley said to me was “It’s MAY!  May 1^st!! Look. I changed my calendar! I changed dad’s calendar!”

At least someone was excited.

It’s these little things in Riley World that can make me smile even before I’ve had a sip of coffee on an otherwise mundane day.

Was he excited that April (Autism Awareness/Acceptance month) was finally over?  A month filled with autism articles, memes and blue lights. I highly doubt it. For Riley is it all about the next special occasion. Once Easter was over he was fixated on May. Mother’s Day is in May. I’m sure being one month closer to his birthday ranks right up there too.

Don’t get me wrong. I am all for bringing awareness to the many disorders, syndromes and diseases out there. Yet for some reason this month, I found myself getting more agitated (a side effect of aging?!?!) so instead I decided not to write about it and pretty much steered clear of all the social media “awareness/acceptance stuff".

And then last night, on the last day of yet another awareness month (see...cranky), I came across this video on Facebook. It was one of the first videos (in my opinion) that was honest, real and not sensationalized. A video about a subject that is often not talked about yet should be. So on this first day of May...I hope you will watch this video "Siblings With Autism". 

If you can't see the video...Click here to watch.

Riley World's 21st Anniversary!!!

Ever since you were little one of your nicknames was Riley-man. Not sure why. It just was. And today you will be 21 years old. You are your nickname.   

I remember when birthdays were not any fun for you. 

And now…you can not wait for your birthday or Christmas or Easter or any other special event. It may have taken you a bit longer but boy oh boy are you ever embracing it now.

I remember when doing any type of group activity was not in the cards. 

And now…you are participating in Special Olympics and “giving it all you’ve got!”

I remember when you had to be put under general anaesthesia to get your teeth cleaned. We did that twice. 

And now…you put it on your visual schedule as if it were just another thing to do on any given day and are a rock star in the dentist chair.

I remember when you were a “particular” eater.  And now…oh wait.   Never mind.

I remember when any sign of crust would be the end of the world. 

And now…not only will you just pick off the offending parts but you will eat grilled cheese sandwiches cut into squares OR triangles. BAM!!

Yes I STILL cut off the crusts but if I happen to miss a spot...you will just pick it off.  :D

In your 21 years…

You have taught me that life is not black and white. It is mostly grey. Not an ugly grey. A nice slate grey. 

And now…there are more rainbows then grey.

You have taught me to live one day at a time. Mostly because that’s all I could handle in the early years of Riley World. 

And now…well…ummmm…I’m still living one day at a time because now you’ve entered Riley World: The Adult Years and it’s scary. Very scary.  

You have taught me to have a sense of humour. Because laughing was a whole lot better than ugly crying. 
And now…I can laugh even more because now there are places that sell beer and wine even on Sundays.

But mostly…you have taught me to be patient. Boy have you taught me. Over and over and over again. You have tested my will to live sometimes.  ;)  
And now…21 years later, I think I am a better person because of you. 

Happy 21st Birthday Riley-Man!  

I Love You, Mom

The Best Advice I've Been Given...

Earlier this week Riley’s other mother and I met for coffee with a mom who is at the beginning of their family’s adventures with autism. We talked about advocating for our child, challenges and strengths of our child and family.

I wanted to write something about our meeting because it brought back so many memories of the early years in Riley World. And then I found this half-written post in my drafts folder. How fortuitous.  ;)  I forgot to mention this piece of advice so hopefully I did not scare her off and she will be back here to read this.

If there is one piece of advice I would give to new families starting out it would be something our pediatrician first said to me “You need to do what is right for YOUR family”. Those words helped us get through the maze of “what to do/what not to do” questions in those early years.

Back in the 1990’s, ABA was THE autism intervention. All I remembered hearing were the horror stories of families losing their homes and getting into debt trying to access this therapy.  O…M…G!!!!!   

If G and I did not agree on a therapy 100%; we looked for something else. Whatever we tried we not only had to be comfortable with it but it had to feel right.  In our gut.  Otherwise…we knew it would not work. Yes Riley would struggle at times but if it ever came to a point of distress for him and the rest of us…we would look in another direction.

There is life beyond autism. Life can not be all about autism. There needs to be a balance.

It was wonderful to hear this new mom talk about wanting to “just be ‘normal’” sometimes whether that meant going out to a restaurant to eat a meal as a family or going out on a date night with her husband. So if you are reading this “mom”…good on you! You seem to already be looking for that balance. I loved how you went to get your child his McD’s Happy Meal to take and eat in the restaurant with you and your husband. Not sure I would’ve thought to do that in the early years. And you did it with respect and dignity for both your child and the restaurant staff.

From my own personal experiences, there will be times when it will be hard not to become cynical or jaded. What is important, in my opinion, is to try not to stay in that place. 

That or......get yourself a cave like I have.   ;)

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!

I Met a Boy...

22 years ago I met a boy. Even though I never dreamed it could happen to me…it was love at first sight. He had brown eyes, brown hair and when he would wrap his fingers around mine my heart would melt.

22 years ago my life changed forever. You have taught me many things through the years. I have questioned many things I have done along the way. I only have one more question…are you ever going to move out???  ;)

Happy 22nd J2!!  

Love, Me

Happy Holidays from Riley World!!

Learning to Offer Choices

*Disclaimer: Strategies/techniques used in Riley World are ones that work for Riley and his family and are not necessarily viable for other individuals/families.

Long, long ago in a far away world lived a little boy named Riley. He was a sweet, happy-go-lucky boy…*cue scratching sound of vinyl record*…wait…ummm…that was as long as things went his way.

One of the biggest challenges for Riley and his family was communication. Acquiring language was difficult for R. This led to a great deal of frustration and in turn challenging behaviours (self-hitting, verbal outbursts and tic-like muscle movements).

Along came Riley’s Fairy Godmother and Mr. Brown (a Behavioural Consultant) who worked with the family to help them understand the ways of Riley World. One of the first strategies/techniques they recommended was to give R choices. They said it would empower Riley to have some control over decision-making thereby diffusing possible triggers for meltdowns. The parental units were somewhat sceptical until they witnessed the positive results.

Sure there were growing pains. Offering choices that would be acceptable to all did not come easy at first…especially for the mother unit. In her mind it was impractical to wear sandals/shorts in the winter. Pick one’s battles indeed however in order to maintain peace and order in Riley World the entire population would need to be in agreement.

Thus began the evolution of the choices “game”.

·         Initially both choices would be things that Riley liked/wanted.

Eg. Do you want to wear blue shorts or black shorts?

·         Next came one preferred choice; the other…well…not.

Eg. Do you want to wear blue shorts or blue pants?

Gradually the mother unit caught on and with experience began to offer choices that would not only broaden Riley’s acceptance of change but would also ultimately result in an outcome that satisfied her. Hey. It was a technique that worked well (for both R and J2) in those early years. Eventually “Choices: The Second Edition” was introduced.

·         Both choices probably not desirable to Riley yet moving towards change.

Eg. Do you want to wear blue pants or black pants?

Of course there was balking and verbal outbursts. Miracles only happen on 34^th Street my friends yet the meltdowns were reduced significantly enough that persevere they did.   

Years passed. Meltdowns waned. The mother unit was hooked on this concept.  

Fast forward to 2014.

The choices game is still in play but gone are the days when the mother unit was able to outsmart Riley. This became very apparent at the start of Operation IFO. Riley has developed negotiating skills and shown signs of a typical teenage sloth (ie. you do it for me even if it means having to choke down a hamburger).

Looks like I am going to have to up my game.  :P