Q is for Quizzical

I’m sure you thought the title of this post would be “Q is for Quarantine”. It was. Until this happened last night.

While quizzical is not exactly the right word, what I am going to try to write about is a piece of our autism "Puzzle”. But, since we are past “P” and onto “Q”…two words, artistic license.

Let me warn you, this is going to be a long post so go to the bathroom, grab a coffee...please bear with me while I try, in my convoluted way, to explain a part of Riley World.

There is a poem “Welcome to Holland” by Emily Perl Kingsley (click here if you’d like to read it) which compares the experience of someone finding out their child has a disability to having a trip to Italy rerouted to Holland. Some parents love this poem and some do not. When I first read this poem shortly after Riley was diagnosed, I bawled like a baby. I could relate to this poem.

In life, it is hard to understand the “how and whys” unless we can relate to a certain/specific situation. It can be even harder to live every day in an environment and still not understand all the “how and whys”. This is what living with autism can be like.

What I consider to be Riley World’s greatest challenge is communication. If you do not know how to say/explain something or can not understand what is being asked of you…think how hard life would be.

Just in case you decided not to read the poem, not to worry, you’re in luck because I am going to provide you with a scenario of my own. Here goes…

You are being taught a foreign language (for example French) but, only for 1 year. You will get to know some key words/phrases. Just the basics though, like how to say water (or wine) and ask where the bathroom is. But you will probably not pick up on the nuances of body language or facial expressions...that’s covered in year two.

Now, imagine you are a guest at someone’s home in Saint-Tropez. They only speak/understand French. No English. You try and answer as best you can with a simple “oui or non” (that’s yes or no for those who don’t know any French). They ask a question. You answer. There is a pause and you are afraid you may have misunderstood the question so quickly change your answer to the opposite. They ask the same question again, you want to be polite so you go back to your first answer…or repeat your last response. Have you ever been in a situation like this???

Even though Riley is almost 26 years old, his language comprehension level is, at most, at about a 9-year-old level. Often times he appears to understand what you are saying. R has an excellent memory and learns most things by rote. He can say and even do all the right things so you assume he knows what he is doing. Unfortunately, that can be the downside because he may not understand why or what he is learning.  

Now that you have no idea what I am talking about, here’s what brought all this on. 

Yesterday I had to do some minor repairs to Riley’s "New" Puppy. Puppy is starting to show some major signs of hard loving.  

So, in my infinite wisdom, I decided perhaps a patch might help the faux fur loss. Riley was most excited when I explained and even showed him what I was going to do. After I finished my handiwork, his enthusiasm was…well, not exactly…enthusiastic.

Not being new to Riley World, I realized something was amiss. Although many FB friends commented how lovely the heart was, I had a slight inkling (after the fact of course) that the patch might be interfering with where he snuggles his face into puppy. But, I decided to hold steady and avoided his eye contact for the rest of the evening. 

Apparently…my feeling was correct because this is what we woke up to this morning.

Riley had my "sewing kit" (I did not exaggerate when I said I do NOT sew) out on the Island along with the dismantled heart.

See that hole?? That hole was NOT there before. A direct result of scissor damage trying to remove the heart.  

Attempt number 2.  Perhaps a patch under the faux fur with a more even/flat stitch might work???? 

Nope. I learned my lesson and asked Riley if he wanted me to "take it out". He did. Want it out.   

Attempt number 3.  I looked up how to do an “invisible seam” on YouTube because that blanket stitch was a major fail! 

It may be a little "bunched up" but...Riley was happy.

Oh, and an additional clue that Riley was stressed out about the patch…he also unwrapped the entire bowl of leftover Easter candy in the night. In previous days we might find one, maybe two unwrapped ones in the morning.

Long, looooong story short...communication is really hard in Riley World. And even though Riley may have challenges with his verbal communication…he makes his displeasure crystal clear. If you made it this far, thanks for hanging in!  Back to my regular shorter posts tomorrow. 

PS...I'll let you know if New Puppy makes it through the night unscathed.  

N is for No

It seems that one of the first words after mama and dada that a child learns is “no”. Followed closely by the first question…”why?”

Autism can affect speech, language development, and social communication in many ways. If you are interested in a brief explanation, I found this article, “In autism, speech and communication are not the same thing” to be helpful.

Speech/communication was and still is extremely difficult in Riley World. When he was little, not being able to find the words would often lead to ummmm…challenging behaviours. Screeching, yelling, and meltdowns.

Yes, this was at HIS birthday party before he was supposed to open HIS presents. 

When Riley was first learning to talk, we were big on him using “Yes please" and "No thank you”. Especially when he was protesting. We had hoped it might take the sting out of being screamed at just a little bit.

Riley would learn “chunks” of language/phrases from videos he watched or his environment. So, his repeating “Yes please” or “No thank you” was just a group of words he learned as one chunk.

As he’s gotten older, his verbal communication has improved. We have noticed some significant changes over the past couple of years since his group started having speech therapy sessions focussing on social interactions.

As adults, we tend to elaborate/are more subtle with our answers to questions as opposed to a straight “Yes please” or “No thank you” in order to have a social interaction.

In Riley World, less is more. He realizes “No thank you” is actually three words and has dropped the last two words from that “chunk” almost completely these days.

For example, answers to the question “Want to go for a walk?” might look like this: 

Me:  Hmmmm...it is beautiful out but I think I will take a pass thanks.
R:  No.

OR

Me:  The pollen count is extremely high so I’d better stay indoors.
R:  NO!!!

OR

Me:  I’ve got a hang nail but maybe next time.
R:  Nonononononono...NOOOO!!!

Personally, I think I liked it better when he thought/spoke in “chunks”.

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.

Re-Entry...a Rough Ride

After 11 nights away, re-entry into Riley World has been a little ummm…rough the past couple of days.

We usually only go away for 4 nights; 7 nights top. Unless it’s away to visit family or the occasional 10-day trip for special occasions. When I first told Riley, that we would be away for 11 nights, he was not impressed. His immediate response was “THAT’S TOO MANY!”  He eventually came around but in hindsight…I guess it was too many. Especially at this time of year.

The “ready to go home” scripting started around day 6.

“I DO have to STAY on vacation! I am NOT going home on December 18^th! I have x more nights to STAY on vacation.”

Oh...let me just add in here that on day 4, I had decided we would take an overnighter to Disneyland and Universal to break up our trip because Riley loves to see the Disney characters and his "girls" (from Despicable Me). Let's just say it was much more stressful than I had anticipated. And really...I'm not new here. I'll fill you in on the details in another post. 

So as soon as the wheels hit the tarmac…“It’s good to be home! Is it good to be home?  Yes it’s good to be home again!!”

He was so anxious to get home that he did NOT even want to stop at McDonald’s on the way home. As soon as we walked in the door…

FIRST…hat, jacket, shoes off THEN update visual schedule which
basically meant removing any and all PCS related to "vacation".

Next…unpack the suitcases. ALL the suitcases!

I remembered the last time he ummmm…helped me unpack so I was right behind him. Or so I thought. He had already emptied his suitcase and was just getting started looking for the rest of his things in the other suitcases when I walked in. I found the rest of his stuff and was ready to go about my business when I realized he was standing in the doorway just looking at me.

“Where’s my underwear?”

After a frantic couple of minutes, I realized he had already put all his clean underwear (which were in his suitcase) in the laundry. Trying to explain to him that we did not forget his underwear and the underwear he put in his laundry were, in fact, clean underwear and his dirty underwear were the ones in the plastic bags wasn’t going to fly with him. Nope. No way. Cue “mini”-meltdown. 

I say “mini” because as Riley has matured, so has his ability to cope with his stressors and express/communicate his feelings. Still…seeing him SO upset and trying so, SO hard to hold it together is hard. Really hard.

When Riley hits that point of no return…there is no reasoning that is going to happen. Talking “at” him (and that’s what it would be) is pointless. I have to let him try and “de-escalate” on his own as long as he is not causing harm to himself. So he yelled, he screamed, he slapped his hands against the walls, he pulled at his hair, he cried. But then…he let me hold him. After a short time, he calmed enough that he was ready to go occupy himself on his laptop. For a while, he was loud. Very loud. But in a way that we knew he was just releasing his emotions. 

Oh and just to clarify, it was NOT just the underwear that brought these behaviours on. That (the underwear) was, what is referred to as the "trigger" or in more user-friendly terms..."the last straw" of 11 days away from home. 

Thankfully by the next morning he was happy and excited to go on an outing with his group of friends.

And then……

The following day, there was a huge wind storm and our power was out for 7-1/2 hours!!! 

I’m going to stop here.

I’m starting to hyperventilate and it’s too early for a festive beverage.

The only saving grace…the power was on at the bowling alley for Riley’s Christmas Fun Night and his weeks and weeks and weeks of talking about..."On December 20th I'll see Santa at the bowling alley and what will he say to me? he'll say 'what's your name big fella?' and I'll say 'Riley Tucker' then he'll ask me what do I want for Christmas? and I'll say stuffies of Jenny and Charlie and Dory and Nemo, a new DVD player Sylvania with the new remote, Hotel Transylvania 1, 2 and 3 summer vacation 3 movie dvd collection, the Land Before Time 14 complete collection. That's what I want for." came true. Hallelujah. 

Reciting his list to Santa

The moral of this post…compromise on the number of nights we go away. Riley prefers 4-7 nights; this time it was 11.  Next time I’ll go with 10. 

Mini Melts

I wish this was about the ice cream. It’s not.

Just when you think it seems like forever since you’ve spread any autism awareness….BAM!!!! 

Serves me right for thinking it.

About a year and a half ago we took Riley to his first concert at the T-Mobile arena in Las Vegas. Crazy right?? We had good reason… J1 was performing.

Prior to going, G had acquired some noise-cancelling headphones for ummm…himself. What better time to see if R would take to them. 

Well…he rocked the headphones!! So much so that he barely looked up from his iTouch unless I prompted him. 

This past week we took R to his second concert. Only this time to watch J2 perform. Even though it was a smaller venue, the sound seemed so, SO much louder!  Maybe it was the lower ceilings. Maybe it was because my ears are almost 2 years older. Whatever reason…it seemed really, REALLY LOUD!!!

Halfway through their set, R started to unravel. G tried to get him to put on his headphones. He refused. He started to scream. He started to flail his arms. He was NOT happy.

I was sitting across from Riley. G was beside him looking at me. I had to scream at G to trade seats. It became a scream fest. Only thing we had going at this point was the noise. It was so loud that nobody could hear Riley screaming at the top of his lungs. I didn’t try to stop him. That would have only made things worse.

The flailing arms?  Ummm…yea. People behind us may have noticed or else they thought he was doing some sort of crazy dance moves. Whatever.

In between screams I put the headphones on him. He screamed in my face. It crossed my mind to scream back at him. I refrained. Only because we were out in public.

He flailed some more.

I placed my hand on his back. I said nothing. I avoided eye contact.

He started to calm.  He stopped screaming.

I glanced over at him. He said “Phew. I’m all sweaty.” as he wiped his forehead.

He WAS sweating. I was sweating.

A few more minutes and “It’s too hot. I need to sleep downstairs.”  “Absolutely you can.” To be perfectly honest, I would’ve let him sleep on the roof if he wanted.   

A few more minutes and he was back doing his word search on his iPad. I don’t have any pics. I was ummm…a little preoccupied. 

I write about this because things aren't always sunshine and rainbows in Riley World. There are still times when autism rears its ugly head. It is not nearly as frequent or as severe as it once was but it is always there. In the background. Usually when I have become too complacent and least expect it. 

Yet there is still growth. What used to take hours and HOURS to recover from when he was young…at almost 24 years old, it took only minutes this time. Many minutes. Minutes that seemed like hours at times but minutes just the same. AND he was able to use his words when he was able to.

And here I thought we would get away with an autism awareness free month.  Silly me. 

Million Dollar Smile....and it only cost me $10

One would think after almost 18 years I would know what makes Riley World tick. All the subtleties. Every little nuance. One would think.

And then…BAM!  Right in the face….a reality check.

One of the things on Riley’s Christmas list was “The Grinch CD.”

Every time I saw him, he would specify “The Grinch. Just the disc.” Of course I knew what he meant. Duh!!  He wanted “How the Grinch Stole Christmas” DVD! Just like all the others on his list. Why he specifically kept saying “Just the disc” for that one and only item…surely slip of the tongue.

And then…

Last week he came downstairs with this in hand…

*25W lightbulb turns on*

Me:  OHHHHHH...You wanted the CD!
R:  …....
*I’m sure he was thinking…ummmm…yea!*
Me:  I’m sorry.
R:  That’s okay!  
Me:  You wanted the AUDIO CD. You wanted the one that tells the story.
R:  *relieved voice*  Ohhhhhh-kay.
Me:  I made a mistake. Sorry about that.
R:  Did you make a mistake??  You made a mistake. That’s ok.

So last Friday we went to try and ummmmm…rectify MY mistake.

We looked in all the shelves. No luck. I told Riley we could buy it online but first we would ask at the front desk. After looking it up, the young man said he would go check in the back.  

I didn’t have a lot of hope but we waited patiently.

And then….

R ...“HE FOUND IT!!”

I hadn’t even noticed he had come out. I was doing everything I could, short of jumping over the aisle, to see if he had anything in hand.

Sure enough…

As we waited to pay, R kept repeating “HE FOUND IT! Now it’s perfect!” 

R's not one for pics...but I asked him to show me his "Happy Face"

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. 

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. 

Want vs. Need

I know I said I would not speak of my #LosetheBooze Challenge anymore.

I lied.  Why??? 

Because on Thursday I am officially calling the Challenge OVER!!!  Why???

Because on Thursday I am going away on a girls weekend and well…DUH!!! 

I’ve thought about many things over the past 24 days, 3 weekends, 2 National Drink Days and 1 special occasion. Vodka, gin, wine to name a few.  :P  Believe it or not I even had an “Aha” Riley World moment.

My mother used to ask J2 when he was younger “Do you WANT it or do you NEED it?” Born during the Great Depression, she knew how to make that distinction.

Many times this past month, I could not help myself from thinking about the number of days I had left before I would be done with this stupid idea Challenge. It started off as the odd thought. Some days I thought about it when 5 o’clock somewhere rolled around. Who am I kidding. That happened almost every day. ;)  Then there were times when I obsessed about it…if for no other reason than the fact that I could not have it (much like food and dieting for me). Basically…I just wanted this Challenge to be done. And counting down the days helped me realize there was an end to all this madness.

That’s when it hit me. My obsessing over the number of days I had left just might be what it is like for Riley when he can’t stop talking/asking about the same thing over and over and over again. Makes sense right?? 

Only for Riley, his is more of a need than a want. Not always but many times. Because communication is difficult for him, he uses what he knows (repeating himself over and over and over again) in order to reassure himself that something will/won't happen which, in turn, provides a sense of comfort and security for him.

Sure there are times I feel like I need an adult beverage. The stresses of Riley World sometimes take a toll on me. But for the most part…I’ll admit…I just want one. I mean really, REALLY WANT one!

 See you next week!!!

I Surrender......

I only wish the white flag I was waving was on this beach. Then surrendering wouldn’t feel so bad.

Photo credit: MorgueFile

Every so often this autism thing will still come and bite me in the butt. When I least expect it.

I mean I can listen over and over and over ad nauseam and laugh at the appropriate time as Riley scripts the one particular scene from Mrs. Doubtfire where I dared to laugh the first time.

I can even listen to him reciting all 24 DVD’s on his birthday list for 6 months leading up to his birthday.

Hell…I can listen to him grumbling for 21 days that it is “STILL MAY”!  (Remember…as soon as Mother’s Day was over R was ready for June because June means Father’s Day and his birthday.) 

What made me crack this time…socks and pajamas. 

Silly right??

It isn’t often that Riley will initiate a conversation so when he does…I am all ears. 

R:  I want some NEW socks please.

Me:  ?!?!?!?  What kind of socks??

R:  Red and black socks.

Me:  ?!?!?!?  What happened to your socks?

R:  I don’t like them.

Me:  ?!?!?!?

I found this in his bedroom garbage.

He’s been wearing these socks for months. 6 pairs with black stripes; 6 pairs with the light grey stripes. ALL the pairs with black stripes were in the garbage.

When I went to count how many pairs were in there I found this…

Call me perceptive but I think I figured out why he wanted new socks.  ;)

A little while later R initiated another conversation. Two conversations within a 15 minute window???  What the heck?!?!?

R:  I want my hockey pajamas.

FYI:  Riley hasn’t worn pajamas since ELEMENTARY school. He wears shorts and a t-shirt to bed.

Me:  ?!?!?!?  What kind of pajamas??  *Hmmmm…there seems to be a pattern in my questioning*

R:  Blue ones.

Me:  ?!?!?!?  Blue ones??

R:  YES!!  *excited that I surely must’ve understood because I responded with “blue ones”. *

Aaaaaaand I was done. Try as I might there are times that I have absolutely no idea where things come from in Riley World. I want to understand. I really, really do. You may even have some ideas of your own. But...honestly...after 15+ years of Riley World there are times that I just don’t know and frankly…I just don’t care to try and figure it out anymore. Well…at least not about stuff like this.

Why???

Well…in the big scheme of things in Riley World if it’s not a safety issue or health issue…life will keep rolling along regardless of the socks he wears or movies he likes or reasons for either. Having said that…these “things” can still be a trigger FOR. ME.

It’s been a discouraging week in Riley World Phase 2: Adulthood. I had intended to share our plans for the future as they happened. I have been too overwhelmed to do this. I will try harder to let my frustrations out and share some successes along the way so these triggers in Riley World won't wear me down. 

To quote one of R's favourite movie lines...."better out than in I always say."  That or see you on the beach!  :D

Foto Fun

Whenever I am on Riley’s blog FB page I can’t help but smile at the cover photo. Now I could leave you hanging or make you go to FB to see what picture I’m talking about but since I update the cover photo every couple of months…here’s the picture I’m talking about. :D

This picture was taken on our holiday this past February when we went cruising in the Caribbean. Now I’m sure you have heard the saying “a picture paints/is worth a thousand words”. I mean doesn’t Riley look happy? Well...relatively happy. And maybe even like he’s having fun?? Well my friends…in Riley World there is much, MUCH more to a picture than what is visible to the naked eye.

One of my early posts was “Autism as a Second Language” where I gave an example of one of the most challenging aspects of Riley World…language/communication. Communication is more than “talking” or “words” but for this post I am just going to give you another Riley World example.

First let me explain that this photo-op was not your usual “stick your head through the hole” setup which, as you can see below, Riley is quite comfortable with…ummm...now.

Oh no. This particular one was on a raised cement platform/stage and instead of holes...you stood behind the stand and aligned your head with a body. Not quite as easy as one might think and definitely "Something Different"!!  No one was around to take a picture of the two of us. No one was around for R to model after. Riley was up there on his own. He was not impressed to begin with so in order to get this done as quickly as possible I decided to direct him with verbal instructions. And as it turned out...many, MANY verbal instructions. TOOOO many verbal instructions. Verbal instructions do not work well in new situations in Riley World. Really....I am not new here.

The heads on the frogs actually dropped down backwards to allow for up to 4 people. 

Instruction 1:     “Go stand behind the board Riley so I can take your picture.”

 This should have been my first clue that verbal instruction was not a good idea.

Instruction 2:      “Riley…go aaa-round (motioning with my arm) to the back.”

He stopped just short of going around to the back. SO not happy!!

Yes…I know I should have just gone up there and physically helped him go behind the board. 

But I wanted to get this over with quickly. ;) 

Instruction 3:     “Riley…keep going aaa-round (again motioning with my arm with much bigger

                        sweeping motions). Go BE-hind the picture.” 

He made it back there but stood a little off to one side. 

So...MORE verbal instructions (4, 5 AND 6).

 Finally R was lined up with the empty frog. 

Only...he was about 3 feet back. 

Instruction 7:     “Riley move forward (motioning with my hand). Keeeep coming. (8 and 9)”

Instruction 10:     When he was finally in position…”Riley put your head through the opening.”

And that’s when this happened...

He bent down to try and put his head through the opening just. as. I. had. asked. 

Only....there wasn't an opening. 

He makes me smile! :D

Oh....and why do prepositions have to be so hard!