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!!

How DST went down this year…

Twice a year the clocks change and cause a disturbance in Riley World. Not to mention what it does to me. For as long as I can remember, Riley’s reaction is something like this…

Click here if you can't see the video clip via GIPHY

It is a two-person job in our house. One person per clock would be better but…

Try as we might…inevitably there will be one rogue clock that refuses to sync with the rest. 

Before G & I went to bed on Saturday night, we assumed our positions. Each next to a different kitchen appliance. I changed the clocks on the microwave and stove. We stood at the ready…fingers poised and hovering over the “reset/start” button. As soon as the time on my cell changed to 10:58, we would simultaneously (or as close as possible) hit our button.

We still had about 30 seconds to wait. 30 seconds seems like an eternity when you are waiting.

And then…G panics. The stove clock reverted back to the current time! We quickly changed places but not before the time clicked over to 10:58. Damn!! 

We regroup. This time G at the microwave, me at the stove.

Again…we wait.

10:59 appears on my cell.  “NOW!” I yell.  High fives and upstairs we go. One more set of clocks before heading to bed.

Now if you don’t live in Riley World or the Land of Autism…going to such lengths to change a clock probably seems ridiculous…insane…or downright irrational. Just so we’re clear…it is. Welcome to Riley World and the Land of Autism.

Oh…and for the first time EVER…Riley did not come around even once on Sunday muttering that “the clock is wrong!” 

Looks like G & I have finally passed Clock Syncing 101.  

Daylight Saving Time AGAIN!!!

Ahhhhh...Daylight Saving Time. The bane of Riley World's existence. In case you are new here...you can read why here. 

There’s a phrase often used when navigating the world of special needs. “Presume Competence”.

I’m sure our Fairy Godmother was beating her head against the wall having to explain to me over and over AND over again what that meant back in the early years of Riley World.

So what exactly does "presume competence" mean??  

“We often use the phrase “presume competence” in the context of developmental disabilities in a very specific way – because the presence of a diagnosis often leads to a dismissal of potential and abilities that may be attained by the individual, sometimes in a non-traditional way.”

~ Lynne Soraya

Or, in a nutshell…

“Presume competence means – assume your child is aware and able to understand even though they may not show this to you in a way that you are able to recognize or understand.”

~ Ariane Zurcher (Emma’s Hope Book)

Now if you are just starting out on your adventures and you always try to “presume competence” with your child …KUDOS TO YOU! Seriously. I admire that. Because to be perfectly honest…I did not always do that in the early years. Heck…I still don’t always do that. I know. Shame on me.

I have no doubt Riley is intelligent. Where my doubt lies is in my ability to teach him in the manner he requires in order to learn. Communication is THE most challenging aspect in Riley World. We have been working on “Wh” questions (who, what, where, and when) and OMG don’t get me started on pronouns for the past 15+ years! Just how long am I supposed to presume competence for?!?!?

And then along comes November 1^st.  The beginning of a new month and a highlight in Riley World. First thing this past Tuesday morning:

R:  I changed the calendars!  *happy as a clam*

It was followed later with:

R:  It’s Daylight on Sunday. *in his concerned voice*

Me:  *very confused then….ping*  Yes! It’s Daylight Savings on Sunday.  Do you know what that is?

R:  What??

Me:  You get to sleep in longer in the morning. (No way in hell I was going to suggest I would be changing the clocks.)

R:  It’s Daylight on Sunday.

Me:  That’s right.

R:  The clocks will be wrong!! *clearly annoyed*

Me:  *slightly panicked* No. The clocks will be okay. I bought NEW clocks.

R:  You bought new ones??

Me:  Yes. The clocks will be okay.

R:  They will be okay. *not at all convinced*

We’ve had the same conversation many, MANY times since Tuesday. SO. MANY. TIMES!!! Only most end with R grumbling “The clocks will be wrong!!” 

Now what has this got to do with presuming competence?? Well, Riley has never, EVER brought up Daylight Savings! We usually just change the clocks after he has gone to bed and pray they will be synced down to the nanosecond when he wakes up. After all, it only happens twice a year and not even on the same date.

Yet this past week he noticed it on my calendar and has been perseverating about the clocks being wrong ever since.  *sobbing*

So in answer to my earlier question (how long am I supposed to presume competence for?!?!?)….apparently 15+ years is how long. 

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.  

The EEG "Adult" Experience

The last time R had an EEG, we were still able to go to Children’s Hospital. There is quite a difference between going to Children’s Hospital and going to a “regular” hospital. There are no TV’s, no DVD’s and mostly… no Lovely Leanna.

For the first time ever though, R was inquisitive about this appointment.

R:   Where we are going? 

Me: We are going to a different hospital.

R:   What is it called? 

Me: Vancouver Hospital.

R:   What it is on?  (no that’s not a typo) 

Me: 12^th Avenue.

R:   Who’s the doctor’s name?

Me:  Ummmm…I don’t know. It will be someone different.

R never, EVER used to ask questions. ANY questions. So…WOW! And as always I handled it in my usual seasoned autism mom manner…by avoiding any further interactions. I was, after all, driving. 

As luck would have it…traffic was CRAZY!!! What would normally take 25-30 min took almost an hour. Yes…we were late. I was very apologetic. They were so gracious I wished I had flowers, chocolates, coffees or all three in hand. We went right in.

Riley immediately asked for the Winnie the Pooh and Piglet too DVD (from his previous 2 visits to Children’s Hospital) while looking around for the TV. I knew there would be no TV or DVD's and being the seasoned autism mom, remembered to bring along R’s iPad to distract him. See. I’m learning.

The doctor came in and was getting organized.

Dr:  Have you ever had an EEG Riley? 

R:   Yes Peter.

Me: *noticed ‘Peter’ had a name tag on - pretty sure Peter has rarely been referred to by his name before.*  

Dr:  *double take then smiles*

A few more questions and the fun began.

The technician was not wearing a visible name tag so “we” didn’t get her name. She was very nice but no Lovely Leanna so let’s just go with Nice Nancy.

Nice Nancy began to mark R’s head while he played Word Search on his iPad. He grimaced a bit…not so much from pain but more from the idea of someone touching his head.

Then came the wires. This time they used a paste to attach them as opposed to glue which was much quicker and ummm…easier.

Finally done...

He looks "happy" doesn't he. Don't be fooled. He was not.

Nice Nancy asked if I thought R could do a couple of “tests” (deep breathing and a flashing light). I said we could try. 

Then it was time to dim the lights.  

Now the last 2 times, we had to do a “sleep-deprived” EEG. As an “adult”…this was not requested. Lucky for us, R usually gets up between 3:30-5am soooo I was pretty sure he would fall asleep.

Nice Nancy instructed Riley to close his eyes and to try to relax. R closed his eyes and well…ummm…relaxed. Did I mention that R’s “stims/tics” get exasperated when he is under stress??  Yea. That.

Then Nice Nancy asked Riley to take some deep breaths. We both modelled for him. He copied. Sort of. He breathed in and out so ummmm…deeply that the likelihood of him hyperventilating within 6 breaths was enough that Nice Nancy had him stop.

We did not try the flashing light.  

Nice Nancy was most patient and kind. She gently asked him…“Riley can you relax your face?" followed by "Try to keep your head still?"...then "Try not to move your eyes.”  So, so patient.

That is until R decided he did not want to relax his face or keep his head still or not move his eyes. 

At this point he banged both his fists into the bed with enough force to make the bed shake.

Nice Nancy made no more requests of Riley. 

A little later Nice Nancy whispered to me if I might be able to get him to lessen his facial movements. I explained they were tics and the more stressed he is the more apparent they become. Nice Nancy nodded and we carried on.

About 2/3 of the way through R finally fell asleep. For about 3 minutes. Then we were done.

Thankfully he was a little groggy and Nice Nancy was quick to remove the wires and start to wipe his head down with some water.

R:    HEY…YOU’RE GETTING ME WET!! 

NN:  I’m sorry Riley. I’m just trying to get the paste out of your hair.

R:    That’s ok.  STOP GETTING ME WET!!!  *brushing off his clothes* 

Me:  You’re ok. It’s just a little water.  (Pretty sure only a drop or two landed on his shirt)

R:    This is SO STUPID!  *still brushing off his clothes*

And with that…we were done and off to collect on R’s incentive. 

 Two bowls of plain udon with a Sprite with no ice. A small price to pay indeed. Results to come. 

Let's Try This Again...

After I surprised Riley with a cheese quesadilla for lunch this happened the following day:

Me:  Ri, what do you want for lu..
R:    *before I could finish*   Grilled cheese.
Me:  Would you like a quesadilla or pasta?
R:    *in a dejected voice*  Pasta.
Me:   Red sauce or white sauce.
R:     White sauce.

Of course he muttered the entire time but he did manage to "eat" his way through with only a couple of gags/dry heaves.

I gave Riley a reprieve for one day before attempting the quesadilla a second time. I know. I’m a softie. 

A little insight before watching the video:

·         I cut the quesadilla into 4 pieces as opposed to 6. In Riley World, the fewer the number of pieces (regardless of size) the better.  :D

·         I used “new” crackers (ie. different size but ones he is used to eating) as a “distraction”. 

·         I am not concerned with table etiquette at this point ergo the conversation.

·         He likes to look at himself in the corner cabinet...it has glass doors.  :)

·         He often associates words/numbers to videos he watches. In this case it’s the number 6 which he often relates to the 6 pillars from the Kids for Character video he used to watch on VHS. Yea…it’s been going on for THAT long. 

Click here if you can't see the video.

The next step...getting him to eat a quesadilla out of the house because no, they are NOT the same. They are NEVER the same.  *sigh*

I Must Have a Death Wish...

Poor Riley.

He’s had almost a month of doing whatever he wants…when he wants and he has been loving it!  LOVING. IT!!!

Until today.

For the most part I have been happy to let him do his own thing. After all, we all need a break every now and then. Right?  RIGHT???

Well...that is...until today.

I was starting to feel a little guilty. One can never let your guard down for too long in Riley World. With vacations just around the corner I decided it was time to……wait for it…

…introduce Operation IFO once again. Yes of course there is video.  :D

Our last, well…to be perfectly honest…our only success from Operation IFO that has carried over to today would be a grilled cheese sandwich. And that was over 2 years ago. *sigh*

My biggest dilemma?  What to “introduce”. I racked my brain trying to think of food items that might “commonly”  be offered at restaurants (I’m referring to kid menus here).

And then…it came to me.  A cheese quesadilla.  Right???  It meets all the criteria of Riley World. Plain and bland.

Do not be fooled by this pic. The diameter is only about 5"...the size of a personal pizza.

I cut it into 6 pieces. Not too big...not too small...just right.  :D

And then...I called him.

Things I noticed:

·         My voice absolutely does NOT sound like that!!!  

·         He hasn’t lost his skill for negotiating. Although I needed to clarify 5 pieces vs. 5 bites.

·         He can stuff an incredible amount of food into his cheek without swallowing. 

·         There was no table slapping! Whoot!! Mark a big, fat, check mark under the success column.

In case you’re wondering what he’s doing at the end of the video…he’s checking out my calendar. A few swigs of apple juice and manners to boot. Guess we have come a long way since the beginning of IFO.  :D  

Seeing a 3D Movie...through the Eyes of Riley World

Going to movies has not always been a “desired” activity in Riley World. Oh the stories I could tell. It has taken years and YEARS to get to the point where we are today. So if you’re thinking it’s never going to happen for your child…he/she may surprise you one day. Riley sure did.

And thanks to Pixar and DreamWorks the era of animated movies has made going to movies an outing at any age.

Yesterday Riley and I went to see Finding Dory in 3D. The last time I went to a 3D movie I wore the cardboard glasses with one blue and one red “lens”.

Not exactly comfortable nor effective. Tell me you didn’t sit there closing one eye…then the other…then tilted your head to the left…then to the right hoping it made a difference. Am I right???

Well with Netflix and On Demand TV these days, spending the equivalent of a bottle of wine, popcorn with that awful “golden topping” AND having to get out of my “home clothes”…not exactly motivating for me.

However, truth be known…I couldn’t wait to see Finding Dory! With summer break upon us and the weather less than ummmm “summery”…what better time to get Riley out of the house and satisfy my Ellen and Pixar fixation.

Did you know now-a-days the 3D glasses look and wear like real sunglasses? They do. Look…

I digress. Riley, being the more experienced movie goer of the two of us, paid for the movie, led me to the movie theatre and found us a seat as I followed behind in my usual menopausal fog. I did help him get the glasses out of the who-brings-scissors-to-a-theatre plastic wrap. Yesch!

He waited for the instructions on the screen before putting on his glasses. I contemplated taking a picture of R wearing his glasses but decided the flash might be a bit distracting to the other movie goers. I'm thoughtful that way. I, on the other hand, kept flipping my glasses on and off, on and off, on and off. Yea. I’m 55 going on 6.

Finally the movie started. I’m not giving anything away but in a flashback when baby Dory comes on the screen…OMG…she is soooooo cute!  Look. At. Her!!!

No reaction from Riley. Nada. Zippo.

Same when young Dory appears.

Not until the Dory with Ellen’s voice appeared did Riley get excited, looked at me and said “DORY! Look, it’s DORY!!!” 

No matter the progress Riley makes, I am still caught off guard sometimes. It's the seemingly small yet important details...the not being able to associate Dory at her different stages in life that are still such an abstract concept for Riley. Still...so many different dimensions to figure out in Riley World. 

Guess we'll just have to keep swimming.  

   

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.

Obsessions

I usually can pick up on when R wants to ask me something. He will hover around pacing and glancing my way until I stop what I’m doing and look at him. 

R:  I need to go to Wal-Mart.

Me:  What do you need at Wal-Mart?

R:  A sock is missing.

Me:  What happened to your sock??  

R:  I need 12 of them.

Me:  How many do you have?

R:  11.

Knowing he did laundry yesterday, I located the missing 12^th sock on the floor beside the laundry basket.

He seemed somewhat relieved but still a little agitated. G took out all the socks from R’s dresser and R organized them into 2 piles in a specific order that only he knows.

He still looked perturbed.

I suggested we wash the errant sock.

He thought about it…hesitated…then agreed to washing ALL his socks.

He thought some more.

He was not happy. Washing was no longer an option. He made it clear he needed to go buy new socks.

G tried to persuade him otherwise. R would have no part of it. I could see his level of anxiety rising. I intervened before we went into crisis mode.

Me:  Would it make you feel better to go to Wal-Mart?

R:  Ohhhh-kay.  *relieved voice*

Me:  Ok.  You can go after papers. (He delivers the local paper on Sunday mornings.)

R:  I’ll put them in your laundry.  (Translation: I don’t want them anymore. Once they’re in your laundry basket…they are yours.)

It is not uncommon for individuals diagnosed with autism to have coexisting conditions (disorders or diagnoses that co-occur). For example ADHD, OCD, tic disorders to name a few. Why yes, R has all three.

The other day my sister had mentioned an article she had read about OCD and how it can affect kids. We both had a light bulb moment. You see, as a young child I had some obscure obsessions. My need for order, symmetry and precision  and the resulting “temper tantrums” that I had almost every single day from as early as I can remember until around age 10 definitely interfered with daily life. 

I remembered how my socks had to be pulled up evenly.

I remembered how my shoe laces had to be equal and laying straight across as opposed to crooked.

I remembered how my shirts had to have equal amounts showing on either side of the neckline before putting them away in my dresser. 

Growing up in the 1960’s, OCD was not as understood as it is today and instead I was prescribed “crying” medicine (as my mother referred to it) for those times when my behaviours were too much to handle. I found out later it was a “mild” (also as my mother referred to it) barbiturate. Yes. Really. 1960's. Enough said.

Now normally when we have these types of “situations” with Riley, I would write them off as characteristics of his autism. Only this morning I remembered how I felt all those years ago. I have always known Riley had traits of other disorders but this was the first time I think I truly understood and could relate to how he felt.

Obsessions, for whatever reason, may not make sense to anybody but the individual. And if something as simple as buying new socks meant all would be okay in Riley World then new socks it would be. Besides, the last time he bought new socks was almost a year ago.