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.  

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!!!

"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.  

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 Never-Ending List...

It started back in October. 

The Christmas list. 

5 items.

Riley tried to add a 6^th but I vetoed that pretty darn fast. No. Just NO!
There will be NO Teletubbies in this house EVER again.

Slowly the list began to grow…

and grow…

and grow some more until.....

Nice try Riley!     

A Christmas Miracle???

It started on November 12^th. As soon as Remembrance Day was “finished”…the next ‘day of Observance’ in Riley World was THE topic of conversation.  Daily.  Hourly.  Oh heck…every time I saw him.  :O

It goes something like this…“Christmas is coming. In December it is Christmas. What’s in December? Christmas. I need to wait patiently to open my presents. What do I need to wait?  Patiently.”   Ad nauseam.   Over and over and over again.  *sobbing*

This is because all things in Riley World revolve around statutory holidays/specials days/special events. It has been this way since……forever.

On December 1^st the outside lights HAD to be up. Come rain, shine, sleet, hail or snow…the lights MUST be up and ready to be turned on. I stalled as long as I could bought myself some time and promised Riley that the tree/decorations would go up this weekend after I had time to ummmm tidy up the living room. Who am I kidding…our house will never be tidy.  :(

So after G & R left for R’s Special Olympics swimming class this morning…because I am *written in sarcasm font* an awesome autism mom and would like nothing better to do with my TIME ALONE than to clean, vacuum and dust…I downed my coffee and dragged dusted off  got out the vacuum cleaner. Don’t get me wrong…I LOVE Christmas! Only…NOT first thing on a Saturday morning. Just sayin’…

And then…Riley came home. The clouds parted and the angels started to sing. He happily ran up and down the stairs bringing up (one at a time of course) tubs and boxes of decorations. The entire time pleased as punch with himself.

Now Riley had been talking incessantly excitedly about wanting to decorate the tree with dad for weeks on end. Yet he has never…EVER wanted to touch the tree so I seriously had my doubts. Last year we had moved a step closer with Riley “directing” G where to hang the decorations.

And then…the skies were bright blue and the angels WERE SCREAMING!!

LOOOOOOOOOOK. AT. HIMMMM!!!!!!!!!!!!

HE'S TOUCHING THE TREE AND EVERYTHING!  YES...I KNOW I'M TYPING IN CAPS BUT THIS DESERVES ALL CAPS!!!

20 years old and Riley WANTED to decorate the tree!!

Our Christmas Miracle...indeed!  <3

Wrapping Up Christmas 2013

Finally! As of yesterday Christmas was officially over in our house. Granted Christmas was finished in Riley World on January 2^nd…hey undecorating the tree is just the tip of the iceberg.

Ummmmm....yah...thanks Ri.

So just to bring a little blog closure to 2013…here was how our December went down.

December 2^nd:  Tree decorating. First time EVER that Riley wanted to “participate” in decorating the tree…sorta. R did not want to touch or place any decorations on the tree. However he was a very good director and G was a very good placer. 

December 8^th:  My mom treated my sister, R and me to Odysseo by Cavalia. 

R slept through the entire first half. He woke up at intermission and was ready to leave. We didn’t. He proceeded to whine through most of the second half. The conversation on the way out:

R: That was fun!!
Gma: Did you enjoy that Riley?
R: Yes grandma. I enjoyed that.
Auntie S: Did you like it Riley?
R: Yes Auntie S...I liked it.

Oh really.  *smh* 

December 12-14^th:  Since we are on a “gap year” in Riley World we decided to take to the air/road. The three of us (J2 is not on a gap year therefore had to stay home and work…boo hoo) decided to head south for some sun and fun just before Christmas. First stop was Viva Las Vegas. It was National Rodeo week and J1 was playing so what better excuse than to go see him.

December 14-19^th:  We headed west to sunny and warmer Palm Springs for 5 nights. We have some very generous friends who let us stay at their home away from home. My cousin/husband joined us for the weekend and G got in 4 rounds of golf while R and I lazed around the pool. 

December 23^rd:  Riley got his first ride in an ambulance. That was fun. NOT! Since this is an entire blog post in itself…here are the Coles notes: he almost passed out; he has a history of seizures (although he has never had a grand mal); I was alone with him; I panicked; after 2-1/2 hours in emergency we came home and he slept for the next 15 hours. He was better by Christmas morning.
 

December 25^th:  Christmas dinner at my sister’s. A deeeeeelicious turkey dinner was enjoyed by all. Well. Almost all of us.   

Click here or on the pic to watch the video.

You know you want to.  :)

December 26^th:  A fatality in Riley World. After the discovery of R’s beloved Puppy’s remains and a day of shock and dismay (mine), we celebrated the life of Puppy. 

December 30^th:  Santa surprised G and sent him back with J1 to his new home in Nashville for 5 days. I'm not sure who was more excited about that...G or me?!?  I kid...I KID!!!  

2014 has already seen some changes in Riley World that I am excited to share with you. Here’s to more forward than backward steps and as always wine laughs, lots and lots of wine laughs.

Cheers!!!  Di

J2 Reaches the Age of Majority

It was a mere 365 days ago that my first born was no longer a teenager. Today he is considered the age of majority everywhere. in. the. world.  What is even scarier…I HAVE A TWENTY-ONE YEAR OLD SON!!!

I was looking through some old photos (yes…J2 was born in the pre-digital days) and sat weeping softly in the corner reminiscing about the past 21 years. As you can see I have become a little obsessed with PicMonkey. 

From an early age J2 wanted to follow in his big brother’s footsteps. 

 

I was trying to come up with something sentimental yet not tooo sappy...after all we are talking about a 21 year old young man. What better way than through a song and as luck would have it I found these lyrics from the third verse of the number one song on BillBoard Magazine’s Top 100 songs of 1993:

I hope life treats you kind
And I hope you have all you've dreamed of
And I wish you joy and happiness
But above all this I wish you love.

Happy 21st Birthday J2!!! 
I <3 you!

Ten Things of Thankful

Later today we will be filling our faces with turkey, ham and all the trimmings. It is Thanksgiving weekend here in Canada. Yup…we know how to space out our holidays so by the time Christmas rolls around…we will be ready for turkey again. 

My friend Christine over at A Fly on Our (Chicken Coop) Wall co-hosts a Ten Things of Thankful every week. I keep meaning to participate so what better time to start than this, our Thanksgiving, weekend. Christine is amazing! She has been making a list for 19 weeks! 19!!! I will be lucky if I can keep this going after this week. Tee hee.

Okay. Let’s see what I can come up with…

1.      I am thankful for……ummmm……gee……this is tougher than I thought. Hmmmm…*tapping fingers*……I seem to be a little short on thankful this week. Well this is a little awkward. Since I am a little strapped for time today (I am after all hosting dinner tonight) how about you go checkout my "10 Things I Am Thankful For" Monday Listicles that I wrote last year. Not sure how I could top that list anyways.

I will do my best to come up with an original list next week. Until then…gobble, gobble!! 

Best Caricature EVER!!! #Wordless Wednesday

A grad present that had even Riley looking twice!

www.stooart.com

Turning 19...

adult

adjective

1.having attained full size and strength; grown up; mature: an adult person, animal, or  plant.

2. of, pertaining to, or befitting adults.

3. intended for adults; not suitable for children: adult entertainment.

noun

4. a person who is fully grown or developed or of age.

5. a full-grown animal or plant.

6. a person who has attained the age of maturity as specified by law.

Nineteen (19) is the age of majority ("when minors cease to legally be considered children and assume control over their persons, actions, and decisions, thereby terminating the legal control and legal responsibilities of their parents or guardian over and for them”) as recognized in law where we live. For the majority it is the age when you become an adult or are no longer considered a child.  For. The. Majority.  Three words that make all the difference in Riley World.

Age is just a chronological number in Riley World. A number, in those early years, that would cause a great deal of stress and anxiety for me. Yes me. A number associated with so many benchmarks and milestones that Riley World never participated in.

Physically? Yes. R would be considered an adult. If you saw R walking down the street you would not think twice. Ok perhaps you might look twice especially if he were doing his “Mario” walk or scripting from a favourite Disney movie otherwise…probably not. 

Yet there is so much more to consider when you have a special needs child who turns the age of majority. For us Riley will not be going to post-secondary school. Riley will not be getting a driver’s license. However Riley will be doing things differently just as he always has.

We do hope that eventually Riley will be able to get some type of meaningful work. We do hope that Riley will someday be able to live semi-independently apart from us. We do have a lot of work ahead of us. Hold me. *sob sob*

In the meantime at 19 when the majority of kids are ready to go out and celebrate at their local “drinking establishment” Riley celebrated at home with family. We surprised him with his list of about a dozen DVD's and 2 cases and a six pack…of soda pop. After almost 15 years living in Riley World as long as Riley is happy...we are happy. I will let you be the judge…do you think he was happy??

Commencement Ceremonies

As promised here is part 2 of “School’s Out…FOREVER”. The Commencement Ceremonies took place at a downtown theatre. The kids were supposed to be there by 6pm with the ceremonies starting at 7pm and hopefully ending by 10pm. That is a LOT of waiting, sitting, waiting, listening and more waiting especially in Riley World. 

It was a given that Riley would not be able to sit through the 3+ hours so we had decided right after my bout with amnesia that he would arrive part way through the ceremonies, slide into his seat and wait for the “T” surnames to be called. We were given the schedule of events and approximate times the week prior. The Class of 2013 had 287 students.  All we had to do was calculate the approximate time that Riley would walk across the stage. Easy peasy right??? 

Not easily discouraged and having learnt my lesson (yet again) about the importance of preparing Riley, “we” (together with our Fairy Godmother (FG) and R’s SEA-Special Education Assistant) brainstormed and came up with a plan.

1)      Riley had never been to this particular theatre. Would it be possible to go for a tour beforehand? Next best thing was an online virtual tour of the theatre.

2)      Riley loves lists! Writing, reading and crossing off items on lists. We had the names of all the students now all I had to do was make up a list so Riley could follow along and cross off the students as they walked across the stage thereby giving him something to do and keeping his hands busy.

·         I printed the names off on 3x5 recipe cards so they would be small yet easy to handle and kept them together with a ring.

·         I highlighted (in yellow) the names of the students sitting in the row ahead of Riley as a pre-warning.

·         I highlighted (in green) the names of the students in Riley’s row so he would know when it was time for him to line-up in the aisle before going on stage.

3)      Riley World LOVES visual schedules. This time I did not forget.

4)      Riley’s SEA had his iTouch and headphones on standby.

All brilliant ideas right?  Once again thank you FG!!  We were prepared this time. Surely the stress would be kept to a minimum. Surely.   

G and I along with Riley’s "ladies" (his current and past high school SEA’s (3 of them), his Fairy Godmother and his current community worker) arrived for the start of the ceremonies. They all wanted to be there for this momentous occasion.  :)  J2 was in charge of bringing Riley to the theatre later. J2 and I were in contact via text throughout the ceremonies. This time we were prepared.

There were 5 columns of names in the program. Riley was in the last column about 2/3 of the way down. We timed how long the first column took in order to get a rough idea when the last column would start. The texting began:

Things started to move along a little quicker than we had anticipated. Eeep. J2 and Riley should have been able to make it downtown in 15-20 minutes. J2 was going to text when they had parked. I was starting to get nervous.

"Haha"???  To be more precise..."You relax! Haha"!!!  TOO LATE!  I was now IN panic mode.

2 minutes passed. 120 looooong seconds. Time to give J2 a little encouragement. For the first time ever I was glad that tone could not be read into my text message.

That's when I lost it!

You see...my knowledge of the downtown core (particularly street names) is not the best. Once the others assured me they were very close I regrouped. For about 2 minutes. That's when I lost it...again!

That was the end of our conversation. J2 was no longer responding. After another 2 or 3 angst-filled minutes J2 found us. Shortly afterwards Riley appeared. He was all smiles at seeing all his "ladies". He was placed in his proper spot in line. He never did make it to his seat beforehand.

Then it was time for Riley to make his way across the stage.

Click here or on the image to watch Riley walk across the stage.

This was his introduction:
"In his first years at Handsworth Riley was involved in the CIBC Run for the Cure, cross-country running and setting up a Snack Shack.  Outside of school Riley enjoys playing Challengers Baseball and Special Olympics 5-pin bowling, golf and swimming. He would like to thank all the students, teachers and "the ladies" for all their support over the past 14 years. Riley wants to take the summer off but his mom has other ideas."

He walked across the stage like he knew exactly what he was doing. That is until he got to the other side. After a brief moment of "now what the hell am I supposed to do?" he was directed backstage to where his current SEA was waiting for him.

Later the principal told G that as he shook Riley's hand R said to him "Nice to meet you." Always the polite young man. Who cares if this scenario did not exactly fit the greeting.  ;)

Tomorrow the last monumental event of the past month...Riley's 19th birthday!

Until tomorrow...

School's Out...FOREVER!

Where did the month of June go?!? So many things happened in Riley World that I had intended to blog about. Within a 13 day period we celebrated Riley finishing grade 12 with the formal Banquet, the Commencement Ceremonies AND he turned 19 years old! 

To say it has been overwhelming would definitely be an understatement. Not only is Riley done with school FOR.EVER…there will be a huge transition come September.

I am starting to hyperventilate so I think I will just focus on sharing some of the highlights of the final chapters of school life in Riley World.

The Banquet

Suited up and ready to go.

Riley and some of his favourite "ladies". 

The First Dance

Now I am pretty sure the last time Riley danced with a girl was at his Grade 7 Graduation.

I was not about to take the same stance as he did in Grade 7.

We forgot to practice beforehand...which explains the grimaces. 

R & J2 taken towards the end of the night

...out in the hall

...for the third time

...gripping his headphones and iTouch

...thankfully teeth clenched tightly so screaming "CHEEEEZZZ" kept to a dull roar. 

Just 2 years ago we went through all this with J2. Yet this time was different. There would be no pre-Banquet celebrations. No limo rides to the Banquet with friends. No Safe After Grad celebrating.

Did you just heavy sigh?  I am pretty sure you did. As I wrote this I may have let a heavy little sigh slip out too. But to be perfectly honest I never even thought about all that until now. Why?  Because while it was all happening there was too much to think about in the moment.

I forgot about all the energy and excitement in the air from the kids (and parents) being at a fancy hotel dressed up to the nines.

I forgot about how loud it could be in a huge ballroom with a high-ceiling and close to 800 people.

I forgot to go over what the evening would look like with Riley beforehand.

I forgot about the first dance until I saw the program on the table which in turn reminded me that…

I forgot to write up a visual schedule for Riley and...

I forgot to teach Riley HOW.TO. "DANCE"!

Considering all I had ummmm *cough* forgotten about, Riley did remarkably well and being out in the corridor with Riley where it was nice and quiet was a welcome break throughout the evening.  ;)

It is way past my bedtime so I hope you'll come back tomorrow to watch Riley walk across the stage and read about how we celebrated Riley turning 19.  

Until tomorrow...