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!

5...More...Sleeps...

Look at that face.  Is that not the face of anticipation??

Last night was the “Special O” Christmas bowling night where the big man shows up to “surprise” everybody. It was at this event 7 years ago that Riley surprised us all and went up to sit with Santa for the very first time.

Ever since, he has never looked back. At age 20, we even got our first Mall Santa picture.

Riley was eagerly awaiting Santa’s arrival. He was ready. He knew what to do…the same thing they have done for the past 6 years. They would call his name, he would bound up to sit on Santa’s knee and the conversation would go EXACTLY like this:

Santa:  What’s your name big fella?
R:  My name’s Riley Tucker.
Santa:  And what would you like for Christmas?
* At this point, Riley would recite his entire Christmas list *  This year's list...
R:  Frosty the Snowman the original TV classic with the cover from Amazon I found it a DVD player 3 movie Illumination Despicable Me 1, 2 and 3 Shrek the Ultimate Collection Madagascar the Ultimate Collection Cheaper by the Dozen 1 and 2. 
Santa:  I’ll see what I can do for you.

This year…well…*gulp*…they did things a little differently. To be more efficient, they called up the teams one at a time and everyone got to sit on Santa’s knee and have a picture taken. There was not a lot of chit chat. I saw things slowly slipping sideways.

This was very confusing for Riley. He had been waiting patiently to have his “conversation” with Santa. He went up, sat on Santa's knee and waited for Santa to start.

Only he didn't. He smiled for the camera. And then he waited. 

Some awkward silence.

Santa gave him his cookie which basically was the “get off my knee and move along” gesture. Riley World has a hard time understanding gestures. So…Riley sat there still waiting.

Look how excited he is about the cookie.

More awkward silence.

And just as I was about to call Riley down, Santa asked “What would you like for Christmas?” followed by the “I’ll see what I can do for you.”

With that...all was right in Riley World and he had his jacket on and was out the door in the blink of an eye. 

Wishing you all a wonderful & safe holiday season!! 

25 Years in the Making...

If you are new to Riley World and would like to take a stroll down memory lane with me...Click here or on the photo to have a look at the first 19 Chapters in Riley World

Twenty-five years ago, you came into this world. Two and a half decades. One quarter of a century. When the heck did I get so old?!?!? 

Little did we know that life, as we knew it, would never be the same.

When you were born, you were the same weight/length as J2 was...only you were bald.
When you were born, 1 in 150 were diagnosed with autism. Today, it is more like 1 in 59.
When you were born, the movie Rain Man was the closest thing to autism that people could relate to.

Growing up, I was never a very patient person. Becoming a parent, well…never changed that.  

After J2, I thought nothing or no one would ever be able to test my patience like he did. I was wrong.

You changed me.

Who knew there would be so many doctors with such long, LONG waiting lists. 
Who knew there would be so many forms to be filled out. So, SO many forms. 
Who knew there would be so many tears. Tears of joy, sadness, laughter and often times, hysteria.

You have brought autism awareness to so many.

In the early years, it was in the form of a high-pitched scream that would silence a food court. Pretty sure it caused hearing loss to anyone within a 5-block radius.  

As you grew and matured, the awareness you spread was not so ummmm…loud and overwhelming for others (or us). I imagine it had to do with the popularity of earbuds/noise-cancelling headphones.

Nowadays it is your charm and endearing qualities that attract people to you.

You changed our world.

You have changed the lives of many.

You continue to change the world.

Happy 25^th Riley-man!  
We are so proud of you!  ❤

The Journey to the Jam Sandwich

For the first decade or so of Riley World, when we were learning how to navigate this thing called autism, we pretty much walked on egg shells. It was hard for us to understand why or how so many things could cause such chaos in Riley World.

So, SO many things.

Things like a change in food packaging or when McDonald’s white bags were suddenly brown bags or it’s summer now so wearing a parka is perhaps not the best choice or when the power goes out and the clocks aren’t synced anymore so you need to remind everybody that THE CLOCKS ARE WRONG!!!

I need to stop. I’m starting to twitch.

We first started Operation IFO (Increase Food Options) in September 2013. Yes we’ve been at it for almost 6 years. Ok so not consistently but still...Six. LONG. YEARS. 

I made this video montage in the early days of Operation IFO. When there was a lot of table banging, whining and complaining. 

 If you can't see the video...click here.

As I watched this the other day, I realized how far Riley has come and that maybe it is me who is still the traumatized one. Maybe he's ready to try new foods. Maybe he's even excited to try new foods. Ok...maybe not. 

But look what happened when I decided to try a jam sandwich this weekend. Doesn't it look tasty...I cut off the crusts and everything.

And yes...I recorded it for you.

 If you can't see the video...click here.

I was all prepared to have to negotiate for him to eat 1 piece. Do wonders ever cease?!?!? 

It has been a journey. 

The "Yo-Yo" Effect

Communication is more than just speech and language.

Communication can be social.
Communication can be behavioural.
Communication can be one of the hardest things in Riley World.

Last night was Riley’s year-end Special Olympics bowling banquet. As he was eating his dinner before we left (because no, he will not eat anything at the banquet)… *Yo-yo starts to spin down*

R:  Tonight I will get my trophy.
Me:  Weeeeeelllll…we’ll have to see. Maybe not.
R:  Yes! I want to get a trophy.
Me:  I know you do. We can hope for a trophy but we’ll have to see.
R:  I just need a trophy.   

You see, every year since Riley started bowling, he has received either a team or individual trophy. For the last couple of years, we have tried to prep R that he may not get a trophy. It is a hard concept to explain. He does not understand why he is getting a trophy. Most Improved, High Three, High Average are just words and mean nothing to him. He hears his name and goes bounding up to accept a trophy.

On the way to the banquet, *Yo-yo begins its ascent*  Riley started repeating over and over and over “I don’t want a trophy. I don’t need it.”   I acknowledge. I agree. But in Riley World sometimes “do” means “don’t” or don’t” means “do”. Confusing I know so I...ummm…start to back-pedal.

Me:  Well…you might get a tro…
R:  NO! 
Me:  Oh. You don’t want a trophy?
R:  NO! I DON’T want a trophy.
Me:  *sigh*  But they might call your name and then you'...
R:  NO!  *flails arms* 
Me:  Ok. That’s fine.

We get seated. Door prizes are drawn. Dinner is served. Riley is content with a can of Sprite and his iPad. *Yo-yo begins to unwind again*

The award presentations begin. On Riley-repeat is now “I can’t go home yet? (translation: I want to go home.)  I have to STAY! (translation: I want to go NOW!)”  *Yo-yo going up*

Meanwhile my mind starts going into overdrive “What if they do call his name? Will he go up or will he refuse and start to yell? Maybe G should be ready to go up. But what if they don’t call his name. Is he going to freak out?” 

And then there is only one individual award left.  *Yo-yo reaches the top* 

“Male High Average goes to......Riley Tucker!”  He jumps out of his seat and goes bounding up. 

And with that, the Yo-yo unwinds and we’re off to McDonald’s for his medium fries in a small brown bag.