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. 

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

It Only Took 7 Years to Transition...#Wordless Wednesday

Read the History of "Puppy"

Operation IFO (Increase Food Options)

If you follow us on Facebook you are probably aware that we have begun Operation IFO (Increase Food Options) in Riley World. 

Image from MorgueFile

Since we decided to take the summer off in Riley World, I, in all my infinite wisdom, decided that come September I would refocus my energies on some things that I have let slide over the years.

One of my goals this fall will be to try and increase the number of food options that Riley will eat. I admit it. Over the past 4-5 years I have slacked off. Riley has never had a very extensive menu but lately things have dwindled down to only a few options for each meal.

*Disclaimer:  I am not recommending you try any of my strategies with your own child. Much has led up to the tactics that I have employed here. Fifteen…yes 15 years in Riley World. Desperate times have called for desperate measures. I kid. Maybe.

Trust me…I am not going into new territory here. For the moment I am only trying to reintroduce foods that Riley used to “eat”. One thing I have noticed these first few days is that the gagging and dry heaving which used to bring us both to tears have not shown up. Yet.

Here is how the first few attempts went down. I promise after this post I will only bore update you via Facebook. Unless of course we hit a major breakthrough or I have nothing else to write about.  ;)

Day 1 Lunch:  Homemade Cheese Pizza

In the past Riley would "eat" Pizza Hut cheese pizza. I know what you are thinking…homemade pizza is not the same and you would be absolutely right. However after 15 years both Riley and I are a little more flexible let's face it...I am...just...tired so homemade pizza it shall be.

Me:       (In my excited voice)  Riley I’m going to make pizza for lunch.

R:         (Grumbling)  Like Pizza Hut.

Me:       Yes!  Would you like cheese pizza or pepperoni pizza?
             (Note: R does not eat pepperoni however "choices" work well.)

R:         Cheese pizza.

Me:       Alright.

R:         Just say ok please.

Me:       OK.

R:         That’s better.

We are also working on eating/biting into said pizza by the slice as opposed to serving up small bite-size pieces. Go big or go home I say.  

After much grumbling, complaining, table-slapping, yelling, picking, and let us not forget…positive reinforcement and well ummm negotiating, R managed to choke down eat 3 pieces of a personal size pizza. Attempt numero uno…COMPLETE!

Day 2 Lunch:

I decided to go back to the ol’ “First…/Then…” technique.

Me:       Riley would you like soup or hot dogs for lunch? (soup being his preferred choice of late)

R:         Soup please. (Sounding happy and pleasantly surprised)

Me:       Sure. First cheese stick; then soup.  Bazinga!

R:         Just soup please.

Me:       (No response. I just walked away. Walked away quickly.)

When I called him for lunch he came down to find this at his place at the table.

  

Before he even sat down… “It tastes terrible!”

Now for those of us who have no food aversions being “particular” can be unimaginable or difficult to understand to say the least. After all, it is not unusual for kids to be particular eaters right??  In Riley World it goes beyond what one might consider a reasonable dislike/aversion of certain foods. To better explain some of the challenges we face in Riley World, here is a great article “How to Help a Selective Eater” by Snagglebox. Bec writes the most awesome stuff!!!

Back to the cheese stick. Now of course I knew there were alarms going off all over Riley World about said cheese stick. You saw the picture right?? Go ahead…scroll up and look again. It is not the most attractive piece of bread. It has bits and pieces of yucky stuff on top. The texture is sure to be well…bumpy. YUCK!!!  Ten years ago I would have never attempted anything close to a cheese stick. Ten years ago I would have stayed the course of his limited diet. Ten years ago I had no grey hair either. Ok. Maybe some. HAVE YOU SEEN ME NOW!!! 

Me:       Riley. First cheese stick then soup.

R:         (Picking away at the cheese bits)  I’m all done.

G:         Can I try Buster?

R:         Sure dad.  (Relieved to be rid of one of them off his plate)

G:         Mmmmmm…it’s good. You try.

R:         (Still picking)  I’m not hungry to eat this cheese stick.

Me:       How about you eat just one piece?

R:         (Totally relieved)  Ohhh.kay. That sounds good to me!

Me:       (Quickly remove one off his plate)

R:         (Still picking. Gingerly takes a bite.)  How many more?

Me:       All of it.

R:         (Grumbling)  All of it.

Riley did manage to eat the cheese stick. Soup was on standby and in front of him before he swallowed the last bite. I am counting this as a SUCCESS!!

This has become quite the epic post so before I sign off I am going to leave you with a few observations which will also serve as reminders to me over the coming days…weeks…months…years.  *sigh*

·         Portions must be small enough that when stuffed into R's mouth in its entirety…will not require the Heimlich maneuver. 

·         NO eye contact. If he even suspects you are glancing his way you will hear “You are looking at me! STOP LOOKING AT ME!”

·         Do NOT engage in verbal communication. Any form of conversing will illicit any of the following complaints multiple times “This tastes terrible! or How many more? or I’m not hungry anymore. or This is different.”

Seriously…are we only coming up to day 6 of Operation IFO?!?!?  Heaven help us. 

No More School...NOW What?!?!?

For the past couple of weeks I have been seeing articles/posts about going back to school and pictures of kids as they head off for that exciting first day.

Riley (8); J2 (9)

When the boys were young I too would have them posing with their backpacks before heading off for their first day of school. As years went by the boys were not quite as eager to have their picture taken. Surely it had nothing to do with the fact that I was out on the front lawn in my PJ’s, slippers with an extreme case of bed head. Right??

Yesterday for the first time in 16 years there would be no eager, happy, excited, stressed, anxious, glum, annoyed faces to snap. After the excitement passed…it felt strange. I felt a little anxious. Reality hit.

Riley World was finished with school. Forever. Eeep!

What does that mean for us???   

Well in June, after 14 years navigating the school system, Riley was done. I was done. We were all done! We all needed a break. A sabbatical if you will. So we decided to take the summer off to get rejuvenated, regroup and refocus.

For the first time in 14 years we are in uncharted (for us) waters and I am not going to sugarcoat anything this time…it is scary my friends. Very, VERY scary.

We had to start the process of applying for any services/funds Riley may be eligible for again since at 19, R is considered an adult and services/funding is accessed through different government/community agencies. Not quite as daunting as the first time for sure yet time consuming and, at times, frustrating.  

Yes I have felt guilty that we are not as prepared as we should be. Yes I will probably feel guilty many more times in the future. Such is life. For now…

We have some things in place for Riley.

We are working on others.

We are ready to hit the ground running. 

I hope you will stay tuned for the next phase of Riley World. I am sure there will be much to share.  :D

What If???

Two little words in Riley World that have so much more attached to them. 

Stress. 

Guilt. 

Anxiety. 

Self-doubt.

Two little words I must have said a hundred gazillion times back in the early years. (OK. Slight exaggeration probably only a couple million times.)   

What if we had started therapy earlier?

What if we had done more therapy?

What if we had tried ‘X’ therapy?

What if…

Two little words that would send me running full speed ahead into my cave. 

Two little words that were always there in the back of my mind. 


Yet why if it caused me so much stress, guilt, anxiety and self-doubt did I keep asking myself “what if”???

I wanted Riley to be successful.

I wanted Riley to be happy.

I wanted Riley to be the best that he could be.

So what was the difference in Riley World?  What parent doesn't want that for their child. Right?  For us the difference was that our choices could make the difference for Riley.

The difference between being able to be communicate or not communicate.

The difference between being able to attend school or not attend school.

The difference between being able to manage behaviours or risk self-injurious behaviours.

Some of these differences (along with others) continue to be a work in progress.

There was such a huge unknown and it was too overwhelming for me to look 5-10 years down the road into Riley World so instead I could not help but look back and wonder "what if".

Now it has been almost 14 years since Riley’s diagnosis. Knowing that nothing will change what we did or did not do, do I still ask myself “what if?”  You bet I do!  Only now it is not a hundred times a day. 

So what is the difference now? I am almost 14 years older. Eeep. When did THAT happen?!? What we were working towards with Riley is here. Sure I still occasionally ask myself “what if”. Only now the two little words I find myself asking more often are “what will” as in what will happen when we are no longer here.

Scary? 

You better believe it. (This is where I would usually run off to my cave.) Only now I have to force myself to stay put and deal with my stress, guilt, anxiety and self-doubt.

I am not nearly as prepared as others.

I am not nearly as prepared as I should be.

I am doing the best that I can and hopefully that will be enough going forward because Riley is done looking back. 

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!?!  

A Trial Separation

You may have noticed that it has been somewhat quiet here in Riley World since the holiday break. Before I go any further it is not what you think. I did, however, make a conscious decision to take a much needed social media break over the holidays. I will admit I did not go cold turkey.

Image Source

What started as a blog turned into Twitter, then Facebook and most recently Pinterest. I should know better. I have a tendency to get obsessed and one of the reasons why I have not gone the route of an iPhone…yet. 

Drats…I should have taken a picture of that!

I wonder what’s happening with e-friend-A…did she go with the red or blue one?

No I don’t have time to talk right now I need to make a status update/tweet/blog/pin something…it’s been over an hour!

These feelings reminded me of how I felt when I started out in Riley World…overwhelmed! Not to make light of the many, MANY differences between Riley World and Social Media World; yet the terminology, acronyms, political correctness…same game only the names have been changed.

I am sure this has something to do with aging. I used to be a pretty good multi-tasker if I might say so myself. I could type a letter with carbon copies, file, and fax with the best of them.

Yet at this stage in my life my skill set has pretty much reached its max. Not to worry I have not given up and will continue to plug away at my own pace and try not to let my FOMO (Fear of Missing Out) get the better of me.

Trust me; I make no resolutions as that, more than likely, will be a guarantee of failure for me. Instead I hope you will come back on Monday for this week’s Listicles topic as chosen by my pal Stasha “10 Things I have NO Intention of Changing in 2013”. It is sure to be a good one. 

Have a great weekend!  

"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

Choices...aren't always optional

Everybody wants to be a part of some sort of club. There are social clubs, athletic clubs, academic clubs…you get the idea. I belong to two clubs. One is a semi-private club and the other is exclusive. Sounds fancy-shmancy doesn’t it?

 The semi-private club is an autism club. In order to become a member you must have an immediate family member with autism. This would be Riley.



The exclusive club is a cancer club.  It has much stricter requirements in that you need to have actually had cancer in order to be eligible. Ummm...that would be me. I am a breast cancer survivor and this past summer I hit my 5 year anniversary!


There are some similarities between the clubs. The first being early diagnosis is a good thing; second, both are life changing; and third, I’m pretty sure I’m a stronger person because of them.  Now had you asked me 30 years ago would I want to be a member of either of these clubs, the answer would’ve been “No thanks!” At 20, I pictured myself living a life of luxury sipping margaritas (have since acquired a taste for martinis) on some patio in a villa on Lake Como.   I mean who, given a choice, would honestly choose either club??

For whatever reason, sometimes you don’t have a choice.  This is probably a good thing as who in their right mind would choose the harder path?  Certainly NOT me!

Do I wish Riley didn’t have autism?  Absolutely.  As a parent, who wants their child to struggle in life?  Do I try to change Riley now?  Welllll…since I am a woman and we women like to try and change our men… sometimes yes (I just can’t help myself), mostly no.  Riley IS Riley and as stressful and frustrating as it can be at times, he’s a keeper!!! 

Given a choice...would you choose to have done anything differently?

Think about it…D