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.  

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. 

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. 

The Perils of Perseveration

Perseveration is Riley World’s middle name. So “What’s the deal with perseveration?” Well…click on the red words (if you’re reading from my blog) or the blue words (if you’re reading in an email) for a great reader-friendly explanation from my friend Bec.  I’ll wait. *whistling*

Yesterday Riley came downstairs quite distressed about his underwear. His white and grey underwear to be exact. Apparently the night before while getting dressed after his shower, he noticed a teeny-weeny hole just under the waistband. “It’s broken!”  But…he put them on anyways. Shocking. I. Know.

This is what happened to that teeny-weeny hole by morning…

Yup…less than half the underwear was attached to the elastic waistband. He had put what was left of this pair in his laundry basket.

Now typically when R ummmm “rips” his clothes it is due to stress/anxiety. Only took me about 3 years and 87 shirts to figure THIS one out.  If you follow us on Facebook, this will not come as a surprise. Photo proof…

What he looked like when we picked him up one day.

Yes...he was wearing the shirt at the time. 

No...he was not wearing these shirts at the time.

Other times it is because he can’t leave something (a loose thread, a teeny-weeny hole or any one of 1,067 reasons) alone. It bothers him to a point of no return. In this case…the teeny-weeny hole in his underwear. OR…just maybe…he wanted thong underwear instead of his usual boxer briefs. Yea…I’m not buying that either.   

Needless to say R was stressed out about getting some new white underwear. Today. He would have preferred right then and there but we agreed that I would try and find some while he was at his program.

So now the detective work began. Where did I originally buy those particular white and grey underwear??  Because…of course…being a seasoned autism mom…I had cut out ALL identifying labels. I really need to stop being so efficient. ;)  Lucky for me…no-name or generic brands usually mean either Wal-Mart or Superstore.

I managed to find some similar white underwear at Superstore. Not exactly the same but all that they had. As soon as I got home Riley came running down and looked in the bags. I held my breath and showed him the underwear. He eyed them up. I continued to hold my breath. He looked at me. I started to get dizzy. He looked back at the underwear and that’s when I blurted out “These underwear look different but they are just bigger than your other ones and we need to wash them and then they’ll be the same.”  R looked at me and said “Where’s the grey ones?” I don't remember what happened after that.  

How We Handle "Undesirable" Activities in Riley World

When it comes to Riley World…it is all about “incentives”. Motivators so to speak.  Some may refer to these as “bribes” but that…to me…sounds so negative. ;)  So let’s just go with incentives shall we??

Whenever an undesirable activity is in the foreseeable future, my mind immediately starts to play out all possible scenarios in which things could go sideways and then…how to try to minimize the fallout.    

One of the activities of Riley’s new program is grocery shopping and then cooking lunch.

I received an email about what was planned for the following day:

And for cooking we are making hot dogs and french fries, so everyone can either pack a lunch and take what they made home, or eat it for lunch! 

This was good. This could work. Hot dogs are one of the few foods R will eat. Sort of. Okay. Wieners. He will eat wieners. Close enough. I responded with:

Awesome...hot dogs and fries! I think I will only send a drink with R and prep him for eating hot dogs for lunch.  He will probably not eat any of the fries but...go for it!!  :D  Peer pressure can sometimes work.  Probably not but you never know.  :)  Also...R usually only eats the wieners (boiled) BUT we have, in the past, worked on eating an actual hot dog (with bun...plain only...bun and wiener) so also feel free to just put one on his plate. 

You could always give him a choice:  One hotdog with bun or 2 wieners.  Totally up to you though. 

May the force be with you.  Good luck!

Diane

After prepping Riley…I sent this email in the morning:

The incentive is in place.  :)   He's prepped to eat 2 hot dogs (with bun) and to try at least one French fry. Maybe two.  We can only hope.  I mentioned the bun but I will leave that up to you.  He will probably say 2 hot dogs (the incentive) but if you think he's really struggling with the bun...after he finishes one w/bun...you can suggest he just eat the 2nd wiener.  He will be most pleased with that suggestion.  :D  Be prepared for piles of ripped bun on his plate.  Hahaha!  I told him G would check to see if he did "a good job" in order to go get his incentive on the way home.    

So what is R’s “incentive”???  5 cases of pop. Yup. You read that right. 5 cases (12 cans/case) of pop. Orange Crush, Fanta Orange, C-Plus, Sprite and 7-Up. The number of cases will vary based on how undesirable the activity may be.

I know what you’re thinking. Why bother with all this…“Won’t he just eat when he’s hu…”  STOP! Just…stop right there!! No. No he will not. It doesn’t work that way in Riley World. We started working on trying to expand his diet (aka Operation IFO) a couple of years ago. Although we did manage to add a few more things to his menu…it is still pretty limited. *sigh*

As soon as he got home he immediately unloaded ALL 5 cases (this is not our kitchen fridge). The line-up on the top shelf???  I think he is imitating pop "displays" at the eateries in food courts. Or not. Your guess is as good as mine here. He has one shelf and the rest...

well...they are relegated to wherever he can find space beside the fridge.  

As you can see...orange is his flavour of choice.  Praying we won't need an incentive in the near future. 

Closure for the Sock Saga...

On the heels of Riley destroying throwing away his black striped socks for reasons I will never know…here is an update that, if you follow us on Facebook, you will already know about. Otherwise ummm…why aren’t you following us Facebook?!?!?

At R's request he went to buy some socks at Walmart with his cousin Sara after work experience. He came home with 2 packs of socks. Socks that he has never, EVER had before. He picked them out, paid for them and seemed quite excited about it all.

Conversation he had later with G over Mr. Noodles:

G: So I hear you bought some new socks today.
R: Yeah I did!
G: Where did you buy them?
R: At Walmart with my cousin Sara.
G: How many did you buy?
R: 2 packs.
G: How much did they cost?
R: *Without hesitation and very confidently*   2 dollars! 

Ummmmm....not exactly. One of the downsides of always using a debit card?!?!?

Keeping my fingers crossed that he will wear them. 

UPDATE:  He has been wearing the NEW socks happily every day since. Then again...there are no other socks in his dresser drawer.  :D

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

The "Prince" and the Pea

It is a well known fact that our house is cool. And we are not talking cool as in the latest styles. We are talking cool in G terms. As in “put on another sweater” or “grab a blanket” kind of cool.

So it should come as no surprise that we would have lots and LOTS of blankets all around the house.

It was not until I was too lazy couldn't find my usual blanket one evening that I noticed there were no other blankets around. Not a single one. Anywhere.

So I went looking.

I found this…

Riley's bed. Can you say "HOARDER"??

That’s right…7 blankets. AND Riley does not just throw them in a pile on his bed. Oh no. He will carefully spread each individual blanket out so there are no visible lumps or bumps. Why yes the letters OCD do pop into my head. 

Now some individuals with autism may also have Sensory Processing (sometimes called sensory integration) challenges. You may hear of children who respond well to deep pressure or who enjoy a weighted vest/blanket, the weight of sofa cushions or even another person’s body on top of them. When Riley was younger he tried a weighted vest. He used it for a while but he seemed to prefer deep pressure touch/massage.

But like a lot of things in Riley World I thought perhaps things had changed over the years and maybe he now liked the feeling of weight (the 7 missing blankets) on his body. 

And then one night I found him like this…

SO not thrilled that I woke him up. Eeep.

Soooo...apparently Riley IS a HOARDER and I do NOT have to purchase a weighted blanket for him. There is also the possibility that he has been reenacting The Princess and the Pea for the past year?!? Although I have no doubt that Riley would pass the royal test for physical sensitivity with flying colours, perhaps I should place a pea under his mattress just in case he should be included in the line of succession. ;)  

Sensory Overload...How Does He DO IT!!!

What is sensory overload? Wikipedia’s definition is as follows:

 

Sensory overload occurs when one or more of the body's senses experiences over-stimulation from the environment.

Sensory overload has been associated with a number of disorders including autism. When Riley was younger, sensory overload was constant. Understandably so. Everything is “new” when you are little. New experiences, new feelings, new surroundings, new people, new, new, new.

Often times I forget what it must be like for Riley. And then something happens to me (like the dentist yesterday) and I am reminded how challenging it must be in Riley World with everything constantly coming at you full speed ahead. 

To try and explain, my perception of sensory overload goes something like this…I decide to go to my high school reunion. Never mind what year. In anticipation I go out to buy a new outfit (black…ALL black with hopes that black will make my 10lb weight gain only look like 5). I’m a little nervous as I have not seen many of these people for “x” number of years. Nope. Still not telling. 

I Google the venue. A little pressed for time, I am sure I will remember the directions without having to write them down. Why are you laughing?? I happily get in my car. There’s not a cloud in the sky, I turn on some music and off I go. About 15 minutes into the trip I realize the venue is farther away than I thought and I start to worry that I will late. There’s an accident on the bridge so traffic comes to a standstill. Gah! I start to get a little more anxious.

Finally traffic starts to move but then I notice it starts to rain. Just enough to be annoying. Just enough to notice that my windshield wipers are smearing more than clearing. It starts to get dark. I notice that I am now late and I may be a little lost. GAH!!

I have no GPS so have to rely on my aging memory. I think I see the street but I can’t quite make out the sign. I can’t see that far…in the rain…in the dark and why the hell is the music so loud!!

As I drive through the intersection I realize that was my street. I try and find a place to turn around. I turn onto a side road. An unlit, gravel, side road. With potholes. The size of craters. I think I may have left my muffler 10 potholes back. Why the eff are there no damn street lights!!! 

And then…my gas light comes on. Seriously??  I tell myself I can fill up before I head home. I finally get back on track. Only I’m not. Apparently I need East Avenue instead of West friggin’ Avenue so not only am I late…I am on the opposite side of the city. Why don’t they make pants with elastic waists and I think I forgot to rip off the damn tag on my blouse and WATCH OUT YOU STUPID PEDESTRIAN!!!  OMFG!!!  DON’T YOU KNOW YOU SHOULDN’T WEAR ALL BLACK ON A DARK, RAINY NIGHT!!!!!  Oh. Right.

With that I decide to bail on the reunion and head home. I can only hope that I won’t run out of gas before I get there.

That, my friends, is my perception of sensory overload. That is how I can only imagine Riley feels the majority of time. How he DOES it is beyond me.  

As Riley has gotten older his coping abilities/strategies have improved ten fold.

As I have gotten older my coping abilities/strategies have…well…not.  

Ironic isn’t it. 

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

The Never-Ending List...

It started back in October. 

The Christmas list. 

5 items.

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

Slowly the list began to grow…

and grow…

and grow some more until.....

Nice try Riley!     

Learning to Offer Choices

*Disclaimer: Strategies/techniques used in Riley World are ones that work for Riley and his family and are not necessarily viable for other individuals/families.

Long, long ago in a far away world lived a little boy named Riley. He was a sweet, happy-go-lucky boy…*cue scratching sound of vinyl record*…wait…ummm…that was as long as things went his way.

One of the biggest challenges for Riley and his family was communication. Acquiring language was difficult for R. This led to a great deal of frustration and in turn challenging behaviours (self-hitting, verbal outbursts and tic-like muscle movements).

Along came Riley’s Fairy Godmother and Mr. Brown (a Behavioural Consultant) who worked with the family to help them understand the ways of Riley World. One of the first strategies/techniques they recommended was to give R choices. They said it would empower Riley to have some control over decision-making thereby diffusing possible triggers for meltdowns. The parental units were somewhat sceptical until they witnessed the positive results.

Sure there were growing pains. Offering choices that would be acceptable to all did not come easy at first…especially for the mother unit. In her mind it was impractical to wear sandals/shorts in the winter. Pick one’s battles indeed however in order to maintain peace and order in Riley World the entire population would need to be in agreement.

Thus began the evolution of the choices “game”.

·         Initially both choices would be things that Riley liked/wanted.

Eg. Do you want to wear blue shorts or black shorts?

·         Next came one preferred choice; the other…well…not.

Eg. Do you want to wear blue shorts or blue pants?

Gradually the mother unit caught on and with experience began to offer choices that would not only broaden Riley’s acceptance of change but would also ultimately result in an outcome that satisfied her. Hey. It was a technique that worked well (for both R and J2) in those early years. Eventually “Choices: The Second Edition” was introduced.

·         Both choices probably not desirable to Riley yet moving towards change.

Eg. Do you want to wear blue pants or black pants?

Of course there was balking and verbal outbursts. Miracles only happen on 34^th Street my friends yet the meltdowns were reduced significantly enough that persevere they did.   

Years passed. Meltdowns waned. The mother unit was hooked on this concept.  

Fast forward to 2014.

The choices game is still in play but gone are the days when the mother unit was able to outsmart Riley. This became very apparent at the start of Operation IFO. Riley has developed negotiating skills and shown signs of a typical teenage sloth (ie. you do it for me even if it means having to choke down a hamburger).

Looks like I am going to have to up my game.  :P