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. 

Why I will ALWAYS be...a Rookie Autism Parent

“You are the expert about your child.”

Have you ever been told this?  I know I have. And after 15+ years there were times when I may have actually started to believe this. But today?? 

I call BULLSHIT!!!  

After 15+ years in Riley World I am in awe at how I can still do things wrong. So…SO wrong!!!  

Call it a weak moment.

Perhaps the amount of food and drink I have consumed this past week have overtaken any brain cells I had left.

I…I…don’t know.

I only know that I cracked.

No...no...

More like...shattered. Under the pressure. Beyond repair. And now…

Now I will have to live with the consequences of my lapse in judgement. The side glances (because I am ignoring all eye contact with Riley), the incessant scripting, the constant questioning until the STUPID (Don’t say that word!) Beauty and the Beast Special Edition DVD arrives from Amazon that I ordered waaaaaaay before Christmas but never arrived and they are now going to ship another one on Monday and I "accidentally"  told Riley that the mailman was bringing it and it should hopefully arrive by Friday because now that Christmas is over in Riley World he started making his birthday list on December 26th and I...just...couldn’t...take him talking about his birthday wish list since his birthday is still 5-1/2 months away every single time I saw him.  Every.  Single.  Time. *sobbing* 

The DVD in question.

After 15+ years in Riley World you want to know who the expert is??   Riley.  :D

It’s been one of “THOSE” days!!!

Today has been an autism kinda day in Riley World. What do I mean by that???  Well after a few other "incidents" we had this little conversation:

R:  It’s missing.

Me:  What’s missing?

R:  One is missing.

Me:  One what??

R:  Mr. Noodles. One is gone.

Me:  ?!?!?  Where?

R:  Downstairs.

Me:  Show me.

Off we go. 

Yes there are 5 boxes of Mr. Noodles.

Yes that is 60 packages.

No this is not unusual. Sometimes there are even more. 

I buy the boxes in multiples of 4 for a discount.

If you will notice...there are only 11 packages in this box.

Let me explain. R likes to have 2 servings (2 packs per serving) of Mr. Noodles every night after his shower. Routine. Habit. Whatever. As long as he ate, G made them. We started to cut back to 1-1/2 packs per serving as R started leaving a fair amount untouched. G would "hide" the extra packs in the corner cabinet and make up boxes downstairs and add the made-up boxes to the pile. I know what you're thinking. How could G be so stupid as to only put 11 packs in the box!?!   ;P  

I am not sure how long or when Riley noticed that one package was missing but today was the day that he let me know it was missing. Can you spot the box with the missing package???

How about now???

Much easier to spot in this picture don't you think?

The angle is much better.


Whaaaat??  You can't spot it?!?!? 


Here...


Let me help you...

Now if you'll excuse me...to hell with "W.O.W." (aka Wine on Weekends). Pour me a bottle...or three.  

Parenting Fail...

“I was very sorry for you yesterday.” were the first words Riley said to me this morning. (Insert knife into heart, turn and repeat.)  

Last night for the first time in a long time we had one of those moments. A moment that happens in Riley World that can come out of nowhere when you least expect it. Yes there is always a reason although not always clear at the time. Hindsight is 20/20 especially in Riley World.

For the past 3-4 days R’s mouth has been in sad shape. Again. :(  What starts out as canker sores turns into full blown open sores on his lips which he can not leave alone resulting in lips so swollen he looks like a case of botox gone bad. Very, VERY bad.

When his mouth is bad he is Miserable (with a capital M and in bold). I understand. I get cankers too. I am miserable when I get cankers and they are minuscule compared to R’s. Yet like many things it is easy to forget the feeling when it is not happening to you personally.

I try to be a little more accommodating when he is not feeling well in order to try and keep the peace. Of all days he had a dentist’s appointment yesterday. That was a no brainer. Reschedule the appointment. Riley was more than happy to remove the dentist from his visual schedule. One point for me. He got to stay home all day and do his own thing. Two more points for me. I made sure to make him his favourite meal (of the three) for dinner. Yup…another point for me. I placed no expectations on him. Until I did.

I called him downstairs for some Tylenol just before he went to bed. He came down grumbling. I suggested he not be so cranky. Yes I have been at this for 15 years now. Yes I apparently will never learn.

He got angry, started yelling (insert his favourite swear words here) and got very agitated. After numerous attempts to calm him down, I, in my infinite wisdom, yelled back. Just so you know I am not totally cuckoo for coco-pops…this shock value response has worked in the past. You know where I am going with this right???  

We managed to regroup and continued on with our evening. Or so I thought. About 30 minutes later R came downstairs and laid face down on the hallway floor not moving or saying anything. Unusual?  Somewhat. Out of the ordinary??  Ummm…okay…a little.

To say that Riley was distraught would be putting it mildly. It has been a long time since he has let me hold him. It has been an even longer time since he has wanted to lie down with me and just “be”. No talking. Just silence with the occasional whimpering (insert knife into heart again here). In the dark. Reassurance for him. A reminder for me. Riley’s emotions and feelings are as in tune as anybody else’s. His autism only affects how he is able to express himself.  

Image from MorgueFile

I wonder how many more times today I will hear “You were angry with me yesterday. I was at a 5.”   Yes I deserve it. *sigh*  Yes I will probably feel guilty for the rest of the day.

Now if you’ll excuse me I am off to look for my noise-cancelling headphones.  :)

Colours of the Month

April is the month of awareness for two things which have had a major impact in my life…autism and cancer. Last year I went green for the month of April. This year I thought about going purple (blue + pink) then for some reason the song “Colors of the Wind” from the animated movie Pocahontas popped into my head. Squirrel!  :)

I guess it is not surprising since so much of Riley World revolves around all things Disney. I never realized how much the message of this song had in common with Riley World particularly the second/third verse:

You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You'll learn things you never knew you never knew.

Pocahontas urges Captain John Smith to "accept humans who are different in appearance and culture and to learn from them". While I am pretty sure lyricist Stephen Schwartz was not talking about autism (then again you never know) when he wrote this song in 1995 and one can interpret the words any way they want, I found the words so fitting and powerful.

So instead of focusing on autism and cancer awareness just for the month of April, I am going to try and do it every day of every month of every year. After all…it IS supposed to be all about acceptance, differences and learning no matter what “World” we live in isn't it?

I'm going on a Sleepover...

Tomorrow (Tuesday) I am going on an overnight shopping extravaganza with a girlfriend to the States. We are staying at a *cough* casino resort but only because it is right beside the Outlet Mall. :)

Now I dare not mention the actual name of the hotel as it is one of Riley’s favourites. I broke the news to him afterschool today. The conversation went like this:

Me:       Tomorrow I am going away for one night.

R:         (sad voice)  You will be gone.

Me:       I am going shopping with H.

R:         Where you are going?  (No that is not a typo…remember this is Riley World.)

Me:       I am going to insert any city in America here.

R:         (sad voice)  You will be gone. You are not coming back.

Me:       I will be gone for 1 night. Then I will come home on Wednesday.

R:         (slightly happier voice)  Will you call me?  (Translation: Will you buy me McDonald’s.)

Me:       Sure. I can call you.

R:         (relieved voice)  You will call me.

Later at dinner:

R:         You will call me on your way home.

Me:       Sure. I will call you. Or…do you want me to surprise you?  (Translation: No call required.)

R:         (excited voice)  OK. You can surprise me.

Me:       OK. I will surprise you.

R:         You can call me on your way home and surprise me.

Yea…I know.  $4.35 is all it takes for things to be right in Riley World. Unfortunately for G, he will probably have to hear about it 435 times over the next 24 hours. Oh well. 

And THAT my friends is how we roll in Riley World!  See you in a couple of days.  

Thanksgiving in March?!?!?

Image from MorgueFile

We have all heard of Christmas in July so why not Thanksgiving in March?!? A couple of things happened last week that just gave me the warm and fuzzies all over. As a warning...this post is very high in sugar.

G was away on a golf trip so I had been on vacation too doing the single parenting thing. No. This was not one of the things I was thankful for. Although *tapping chin*...never mind. Granted it is hardly single parenting when your sons are almost 19 and 20 years old and it is only for one week.

Now typically when your kids reach a certain age they become somewhat self-sufficient and able to fend for themselves. I am not talking anything major here just simple things like staying at home alone for a short time or making themselves something to eat. Surely by the time they are ready to leave high school these things will happen. Right???

Image from MorgueFile

Scrreeeeeeeecchhhh!!!!!!!  Not so fast.

In Riley World the word typical does not exist. When in doubt I substitute the word unique. For example Riley has unique behaviours; unique language skills; unique interests. If you are unsure what I am talking about you can click on any of those red words for further explanation.

Back to why I was all warm and fuzzy last week. Now I am sure you have all read about my Zumba experience this past month right?  *sigh*  Red words again people. Go ahead. I will wait. *tap, tap, tap...*

With J2 working, leaving Riley at home by himself was not an option. No problem. I was not that heartbroken to have to miss exercising. My girlfriends thought otherwise. Damn them.  :)  Now both their sons have gone to school with R since kindergarten. Being typical teens they were off working/playing sports so not around this particular evening. However one younger sibling (who we shall call Bee) was. Now R had never really met Bee yet Bee was willing to come “hang out” with R for the hour. Apparently Bee was a little nervous but only after his older brother (R’s age) Zed (cuz I am Canadian) was giving him “helpful hints” on how to interact with R. “Don’t ask him too many questions at once? You’ll confuse him. Only ask him one thing at a time.” Awesome right???  I am happy to report that everything went smoothly as in Bee only saw R once as he whizzed past him on his way to his room. Ha!

The second feel good came when I was trying to book a haircut for myself. I was able to get an appointment for Saturday before Gary got home. Again the Riley factor came into play. My hairdresser (who happens to be a good friend and parent of a peer of R’s from elementary school) replied with this email:  “Please know that Riley is always welcome! I have the TV in the Salon and I can turn it on. Just let me know how I can make it enjoyable for him.” 

SEE…do I have awesome friends or what!!!

Unfortunately not all things were warm and fuzzy. Sometimes reality bites you in the butt when you least expect it. I heard some news that took the wind out of my sails for a bit. I had some tears, a few awkward moments over dinner Saturday night and immersed myself in Candy Crush Saga for the rest of the weekend. Curses Flannery for turning me on to this game!!!

Although I had one less hour to regroup (thanks to DST) I am even more aware and thankful for good friends/family, I will still buy green bananas and yes I am even thankful for my Magnificent Middle (aka muffin top and back fat).  :)

Here is one of my favourite quotes by T.H. Thompson and John Watson:

“Be kinder than necessary, for everyone you meet is fighting some kind of battle.”

Have yourself a great week!

"Spread the Word to End the Word" 5th Annual Awareness Day!

Spread the Word to End the Word

I hope you will take a few minutes to read and share this article:

"A Word Gone Wrong" by Lawrence Downes appeared in the NY Times on March 2, 2013.

Will you take the pledge?  Thank you!

Getting all "Suited Up" for Graduation!

Image from MorgueFile

High school graduation is just around the corner. For some of Riley’s upcoming grad festivities “proper” dress wear, while not required, would be a good idea since I am pretty sure most kids will not be wearing running pants and t-shirts. You never know though…I could be wrong. So in preparation G had Riley try on J2’s grad suit jacket. Bonus...R looks up to J2 and actually prefers to wear J2’s hand-me-downs as opposed to new clothes. Yah…how many teenagers can you say THAT about?

The following night R came down to eat his 2^nd dinner wearing J2's suit jacket. He had gone into the closet in the guest room, got the jacket out of the suit bag and zipped it back up. He is a sneaky monkey neat and tidy like that.

Now remember…Riley does not appreciate negative feedback. Even if you are calm, anything you say to him that is negative sounding upsets him. When we insisted he not wear the jacket when eating his dinner he got quite agitated.  “SHUT UP YOU STUPID!  I AM GOING TO WEAR MY JACKET ON!”  And something we had not heard before…“I’M GOING TO KILL YOU.” You gasped didn't you? I am pretty sure I heard something. I know both G and I were taken aback.

Riley is not an aggressive person. If anything he is overly very sensitive to anger/violence. If you look back at those three statements, one is grammatically correct; one is fairly close and one well…is not. For the most part any out-of-the-ordinary phrases that come out of R’s mouth perfectly are usually lines from a movie that he has watched.

So…here was our dilemma. Do we let him wear the jacket because really…it is just a jacket that can be cleaned if he were to get it dirty; do we “give in" to R’s outburst/need to assert himself OR do we stand our ground that what we were asking was a reasonable request for an 18 year old? Not as simple as one might think. Let me explain. When Riley was younger there wasn’t always an option. He needed immediate reinforcement/ consequence to a request/behaviour otherwise he could not make the connection. Now that he is older the immediate response is not as crucial. We have some leeway.

Instead G went to get one of his old suit jackets. R was not having any part of that. Fine. His choice. He finished eating his dinner sans jacket grumbling the entire time. When he was finished he grabbed J2’s jacket from the chair and started to head upstairs. We stopped him. He was NOT happy. “I’M GOING TO KILL YOU.” Cue hitting the wall and screaming “I’M AT A 5!” (This is in reference to the Incredible 5 Point Scale by Kari Dunn Buron). Well at least he was using his words. Oish. Next came the tears. In an effort to diffuse the situation G took R upstairs to show him all his suit jackets and to offer him a choice. R begrudgingly decided on the first jacket...the one G had brought downstairs in the first place. 

About 10 minutes later I went upstairs to check on him. He was not wearing the jacket but had it on the floor around him. He looked up at me and said “I was very angry. I was at a 5.” He was on the verge of tears. I sat down beside him and he broke down. He was pleading with me. “Please. I want to wear J2’s jacket. Pleeeease let me wear it on.”  It broke my heart. The word sure was on the tip of my tongue. He said please. He was remorseful. He so desperately just wanted to wear the jacket. Besides…who was it going to hurt right? J2 had not worn the jacket since his graduation. Yet I just could not bring myself to say yes. Riley is now old enough and has some control over his behaviours. As hard as it can be on the both of us, sometimes he needs a reminder that his behaviours have consequences no matter how trivial they may seem and with R’s cognitive challenges talking it through is not a productive alternative.

When I went to say goodnight later that evening R was still emotional. Tears and pleading to wear J2’s jacket was almost more than I could take. One last Hail Mary and I was ready to accept defeat. I said he could wear J2’s jacket in June for his graduation and we needed to keep it clean until June. R seemed to accept that. That was when the halogen lightbulb blinded me. He now had a timeframe he could work with. 

It has been almost 15 years and I am still learning how one four letter work can make all the difference in Riley World. Oi-vay.

Here is R the following day wearing G's old suit jacket. You can't see but he is wearing shorts with no socks/shoes.  :)

We have since discovered that his need to wear the suit jacket was because James on the DVD cover of "James and the Giant Peach" also wears a suit jacket. Why didn't I think of THAT!?!  

"Who's on First in Riley World" Episode 4: Shotty Shotgun

It has been quite a while since I have posted about Riley World and even longer since an episode of “Who’s on First in Riley World”. Did you just gasp with anticipation? I am pretty sure I heard something. OK. Twist my arm. Readers…wait no more.

This past Sunday J2 was quick to remind us (more than once) that it was his one year anniversary of becoming a full-time permanent employee. He has been working part-time for 3-4 years but a requirement (from us) of not going back to school this year was a full-time job.

Since I had not made it to the grocery store I thought a celebratory dinner was in order.  :)  Three out of the four of us were on board. I was more than happy to not cook; J2 loves to eat out and he even went with G’s restaurant suggestion; which leaves well…surprise, surprise.

Now lately R has taken to sitting in the front seat and will race out the door to get to the car first.  As we are getting ready to leave J2 decides to “shotty shotgun” since the occasion was, after all, all about him. Oish. Have you ever heard a 19 year old whine? It is not pretty. Not one bit. I will spare you the back and forth.

This meant having to work out the details with Riley before leaving the house. If you are joining us for the first time Riley has significant cognitive issues so the following is pretty typical of our conversations:

Me:       Riley, J2 wants to sit in the front seat.

R:         NO!  (Well that was very clear. No misunderstanding there.)

Me:       Do you want to sit in the front seat on the way to the restaurant or on the way home?

(I know…too many words. Blah, Blah, Blah. That is why I emphasized just a few key words.)

R:         J2 can sit in the back. (Slightly annoyed)

Me:       You can sit in the front seat now or on the way home?

R:         On the way home. (Remember R tends to repeat the last option when under duress.)

(Just to confirm we are all on the same page I repeat back as a statement, not a question.)

Me:       J2 will sit in the front seat now;  you can sit in the front seat on the way home.

R:         NO! I want to sit in the front seat NOW.  (See how clearly he understood the first time?!?)

(We were going in circles so on to Tactic 2: Giving a choice with one clearly undesirable option (yes you read that right) and one somewhat "acceptable" option. It works for us. Please don't judge. FYI...Tactic 2 worked extremely well with J2 when he was little too.)

Me:       OK. Do you want to sit in the back two times or one time?

R:         Thinking…thinking…finally grumbling… One time.

Me:       Going to the restaurant or coming home?

R:         Coming home.

Annnnd...off we went. What we have found to be quite effective over the years was if Riley was given the choice (albeit slightly sabotaged) and he made the decision, he was ever-so-slightly more willing to accept the ummm "inconvenience". Of course there was the usual muttering from R about having to “share” and being “grumpy”. 

I have a few more stories I could share with you. Not to worry...this post has gone on way too long. Maybe tomorrow. If you just can't possibly wait...here are "Who's on First in Riley World" Episode 1, Episode 2 and Episode 3 for you to reread. You're welcome.

Until next time, D

Some Things Never Really Change...

There are certain “things” that Riley will probably never outgrow. These “things” may change slightly or be different in some way yet I’m pretty sure will always be there. I will actually go out on a limb here and say “Yes, I think this is due to R’s autism...GASP!” hence my term Riley World. Here are a few examples to give you an idea of how I approached these "things" over the years:

Watching TV:   (Note: Thankfully this was BEFORE flat screen TV's!)
Riley used to like to stand right.in.front of the TV when watching his shows. What started out as tapping things on the screen; moved to full hands on screen; then slapping the screen; to outright banging the screen to the point where he would actually push the TV and we wondered whether or not the glass might break. Seriously…ask anybody who came over in those early years. 

Age 2-1/2:    Pumpkin…you’re going to hurt your hands if you keep hitting the TV.

Age 3:           Riley…please stop hitting the TV.

Age 3-1/2:    Hands down please.

Age 4:           Hands down.

Age 4-1/2:    STOP IT!!!

Watching Movies/DVD's:

Age 3:   Why yes...Disney Sing-A-Long videos are his favourites! He REALLY likes to follow along with the words. 
Age 5:   He LOVES all the Disney movies…especially the Princess ones.

Age 12:  I think we need to move away from Disney/Princess movies and try more age appropriate ones.

Age 17:  Who doesn’t like watching Disney movies? They’re “CLASSICS”!

Easter or any time involving a fictional character:

Age 3:    The Easter Bunny came!  Let's go see what he brought!  Here's your basket.
Age 5:    Look Riley!  Eggs!  Put the eggs in your basket!

Age 12:  What???  You want to look for eggs and put them in a basket???

Age 17:  There is no Easter bunny period…end of story. 

             (OK so I wasn't really THAT harsh but that's what I felt like saying.)

Eating:

Age 3:    He's a little finicky. Surely he will learn to try/like other things as he gets older?
Age 5:    He's a particular eater. Surely he will learn to try/like other things as he gets older?

Age 12:  He has a limited diet. Surely he will learn to try/like other things as he gets older?

Age 17:  He hates pretty much everything!

Riley’s “Idiosyncrasies”:

Age 3:   Ahhhhh...look how adorable he is making faces in his spoon.
Age 5:   It’s cute now but somehow I don’t think it will be so cute if he’s still doing it at 12.

Age 12:  Has he really been doing that for 9 years? 

Age 17:  You wanna try changing/stopping insert idiosyncrasy here?  Go ahead. I dare you!

See…some things never really change…they're only different!   :D

"Who's On First in Riley World" Episode 3: Communication Breakdown

When I wrote the first “Who’s on First in Riley World” post I had not anticipated having to write follow-up “episodes” quite so often. This past month has brought about a significant change in Riley World. Having someone who is new to autism working with R adds a whole new dimension, of epic proportions. This is not to say that things haven’t gone well…all things considered, they have.

When Riley first started to speak it took us a number of years before we were able to figure out the limitations of his communication. In order to avoid possible meltdowns (especially in those early years) we learned to anticipate his wants/needs (at times to a fault) and over the years have gotten better at reading Riley. On the flip side R has gotten better at reading us. Now Riley has always been somewhat of a pleaser.  He wants to cooperate and do what is asked of him if he can. Lately we have been able to reaffirm Riley’s keen ability to pick up on certain cues (no matter how subtle) and his ability to appear more knowledgeable/aware than he realistically is in a lot of situations...a double-edged sword so-to-speak.

It was very apparent the other day when I was trying to question R about his first day back to school after being at home for 2 weeks. I was struggling with how to pose my questions so as not to give away any “clues or hints” to possible answers. R looked at me. I looked at him. I asked. He answered. I asked again. He replied with a different answer. I paused to think. He looked at me. I could see the wheels turning; what does she want me to say?  Well either that or he was thinking to himself why the hell is she asking me all these questions! Pretty sure it was the latter. Oish.

So week one ended with a Friday afternoon community outing with a couple of other students and their SEAs (Special Education Assistants). They have gone to a variety of different activities and bus to/from the local Rec Centre together. R called me and after our usual hellos the conversation went like this:

R:         The bus is late.

Me:       Where are you?

R:         I don’t know.  The bus is gone.

Me:       Are you with BW?  (I hear talking in the background)

R:         Yes. Will you come get me?

Me:       Where are you? (more talking/prompting)

R:         I’m at Memorial. (name of the Rec Centre)

Me:       Can you give the phone to BW please?  (Yup…got it right this time.  :) 

Before giving R an answer, I wanted to confirm with BW that they indeed wanted me to pick them up as R will jump at the chance to be picked up early.)

  

BW gets on the phone. They missed their bus; were going to wait and catch the next bus back to school with the others; wanted to let me know they would be late. Great. No problem. I arrived at the school in plenty of time. After ~15 minutes I decided to call R on his cell. Thankfully he picked up. Again our hellos then:

Me:       Where are you?

R:         I’m in the village.

Me:       (Thinking to myself...OK, they are halfway back. I could hear a discussion going on in the background.)

Are you taking the bus back to school?  (Again not wanting to suggest picking them up before confirming with BW)

R:         YES!  (Answers very enthusiastically)

Me:       (That's a good sign. He answered YES immediately and enthusiastically so they must be taking the bus back. Better check again.)
Are you waiting to take the bus back to school?

R:         YES! (Again...very enthusiastically)

Me:      OK. I’m at the back of the school. Should I wait for you at the back of the school or in the classroom?

R:         At the back!  (Again…answers with enthusiasm)

Me:       OK.  See you when you get here.

R:         OK. Bye! (Imagine a sing-songy <== it that a word?!?, happy as a clam voice here)

Another 10 minutes or so go by and I see one of the SEAs rushing into the parking lot. After a brief conversation with her, I headed off to pick up R and BW at the bus stop. Rather than continue this painful monologue, here is what I came up with. Fact: while waiting for the second bus back to school the SEAs were discussing having parents come to pick them up at the bus stop as it was getting later and later. Assumption: this discussion happened while I was on the phone with R which would explain the sudden enthusiasm in his voice. Fact: BW had called and left a message on our home phone, unfortunately I had already left. Fact: the SEAs had it all sorted out and no one was left to their own devices.

Now your "typical" child would have probably relayed the discussion/message about being picked up while talking to their parent on the phone especially since it was more than likely happening at the exact.same.time. Further, I am going to assume R was listening to the discussion, heard "parents pick up", thought whooo-hooo mom is coming to pick me up, life is good, end of conversation. It did not matter that I asked about bussing back to school. It did not matter that I asked about where to pick him up. In fact it would not have mattered if I asked about the economic crisis in Greece. In Riley's mind he knew that I was going to be picking him up at the bus stop (even though at that point I did not) therefore all was good in Riley World. That is all. *sigh*  A whole new dimension.

I don’t know how you would be but I was and still am exhausted!!!

"IDIOSYNCRASIES"...can you relate?

There are some great #hash tags out in Twitterland associated with autism. One of the first ones I came across and wrote a post about was #youmightbeanautismparentif. I found the tweets under this category put a smile on my face, were touching, cute, painful, profound, and some roll on the floor laugh my a**off funny (of course those were the ones I gravitated towards).  :) I think you could even say that that particular hash tag went viral with tweets coming from the autism community around the world. Some of the tweets brought back memories and even more, made me realize just how “common” some of our kids’ “differences” could be.

There is something about connecting with someone you have never met but who has experienced the exact same thing that is comforting. So I thought to myself…maybe there was somebody out there that could relate to some of Riley’s ummmmm “idiosyncrasies” who thought only their child had them. So here are just a few of R’s latest ones that come to mind.

1.      Person specific vocabulary:

Depending on who you are Riley has specific words that you can and can NOT use with him.  For whatever reason, certain people are only “allowed” to use certain words.  If you were to use an “unacceptable” word, he will correct you EACH.AND.EVERY.TIME without fail. There appears to be no rhyme or reason as to why although I’m sure if R could explain, it would make perfect sense. The words can change at any time. Some are short lived and even though others have been around for years (I am serious here), I personally can’t seem to remember MY restrictions until the word is halfway out of my mouth and before I can correct myself, will be busted by R. Here are a few examples.

R does not like me to say the word “alright” as a response.  He will immediately comeback with “just say OK” or “try and say OK”. After I correct myself he will respond with “that’s better”. I can pretty much answer with anything from yes to the cow jumped over the moon just so long as I don’t say “alright”. Go figure?!?!

If G refers to Riley by anything other than “Buster” (a nickname G calls R) these days, he will be corrected. Riley only started insisting within the last year or so.  More recently R has taken it even further and actually tried to sign his name as Buster at the DMV.  Don’t panic, we were not there for a Driver’s license but for a provincial ID card. We are still recovering from driving with J2 when he had his Learner’s license. Oish! 

Uncle Stewart can only be referred to as Uncle Stoo (with an emphasis on the ‘oooo’). Again his response is “just say Uncle Stoo” or “call him Uncle Stoo please”. This, however, applies to anybody within earshot.

2.      Three servings at meal time: 

Certain foods he likes to have in 3 servings; his chicken noodle soup, Mr. Noodles with “no seasoning” (remember he doesn’t like any visible signs of the green flecks) and perogies.  Hot dogs do not fall under this category and well, that pretty much covers his entire diet with the exception of a few other less desirable foods which he would prefer to eat in one serving and be done with.

3.      Then there’s walking:

J2 noticed about 3 years ago when they were walking to school that Riley would adjust his step to make sure he was exactly in step with him (ie same foot forward at the same time). We were quite intrigued when this first started happening. Later we would do a little shuffle step to see how long it would take R to notice…uh that would be pretty much immediately. Yah yah, sounds mean but come on…seriously???  R would find it amusing until about the fifth or sixth time.  :)  The real challenge would come if he walked between me and G and the two of us weren’t in sync. HA!    

So does your child have any of the same or different “idiosyncrasies” as Riley?  What are they?

Image from:  vocabmadeeasy.com

Riley's Social Success Puzzle (Part 3): Extracurricular School Activities

Earlier I promised to write about some of the things we did as follow-up to the “How to Be a Great Friend” and “Friend 2 Friend Autism Demystification” programs that we found to be successful in building a supportive community around Riley so...here we go.

In-class Activity - Making Posters
After the completion of both programs, Riley's teacher assigned the class a project. They were to pick their favourite "Friend Tip" from either program and create a poster.  They were displayed in the classroom and around the school.  

Recess/Lunch Activities
It is pretty much a given that recess and lunch are the most social times at school. These can also be some of the hardest times for Riley to figure out and participate in. Luckily in elementary school, in particular the primary grades, a lot of the time is spent playing. When Riley was younger he was very active and enjoyed most types of physical activity so we just needed a way for Riley to get involved. 

Bocce Ball Challenge
For two years in a row Riley's FG (Fairy Godmother) organized the "RT Challenge Cup". It consisted of four kids (Riley was always one of the kids from his class) on a team from each of Riley's grade classes. It was a round robin tournament with a final "Cup" game with trophies and treats all around.

During the final "Cup" game kids were making signs and cheering on their class team. So cool! 

In-class Activity - "Riley Rules" Book
Another year FG came up with the idea of having R's classmates write a set of "tips" on how to best engage Riley. The students came up with nine tips and the name "Riley Rules" for the booklet. With the generous support from Student Services and the school the booklet was produced which included pictures of Riley and his classmates role-playing each "Rule".  At the end of the year each student received a copy.

I welcome any comments or questions you might have about any of the activities I've blogged about. The final “chapter” (I know you're probably thinking FINALLY) to Riley’s Social Success Puzzle will be about the positive benefits of both programs. The main and, I think, most important one being “friends”. Thanks for hanging in there with this epic post. I promise I won’t do any more.  :D