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!!!

The Challenge Continues...

It’s been 14 days, 2 weekends and 1 special occasion since my last adult beverage. Yup…still counting.

I promise not to keep dwelling on this…well…after this post.

Things have been going relatively smooth in Riley World so not much news to report on that front. We bailed again on snowshoeing this morning. As soon as my alarm went off at 6:45 flippin’ A.M. (remember it’s a Sunday morning), I immediately checked the snow report. When I read the words "...it is going to be a wet one today - bring your best weather outerwear"....yea...that pretty much made my decision for me. 

Having sailed through the first week of my #LoseTheBooze challenge, I have noticed a few little changes in myself this past week. 

Two things happened. Two days in a row. Two words. Road. Rage.

It is one of those things that ordinarily does not bother me. Strange. I know. G has enough for the two of us. Without going into all the boring details I will say both involved left turns and ended with me screaming like a woman possessed in one case and irritated as all hell (and I wasn’t even driving) in the other. Oi-vay.  

The other ummmm incident involved Riley World. If you are new here you might not realize just how limited Riley’s menu is and the lengths I have gone to efforts we have been through to try and increase it. So it is an unspoken rule in our house that a Riley food is off limits. Period.

Unless of course you are 14 days, 2 weekends and 1 special occasion into a challenge you should have never started in the first place. Then…all bets are off.

Four words this time. Salt and Vinegar chips. I saw them. I wanted them. I opened them. 

I left the clipped bag on the counter beside R's Cheerios. I happened to be in the kitchen at the time he noticed them. He looked at the chips. He picked up the chips. He stared at the chips. He then looked at me rather confused. I sheepishly tried to look away.

R:  Who borrowed my chips?

Me:  I’m sorry. I had some.

R:  *slightly annoyed*  You're sharing with me!

Me:  Yes. Thank you for sharing!

R:  *full on annoyed*  SHHHHHAAARRING!!!

So yes I have stooped to a new low. Taking a preferred food from my special needs son. Who Does That!?!?!  I’ll tell you who…a person who has not had an adult beverage in 14 days, 2 weekends and 1 special occasion.

15 days until I can quench my thirst...

A Serious Lapse in Judgement

About a month ago I was driving home from a fitness class when I heard an ad on the radio to #LosetheBooze for the month of February to raise funds towards cancer research. For some reason this piqued my interest. Obviously I was delirious from my workout.

Then I thought I would propose this idea to my dragon boat team. We are all about supporting each other and doing things as a team. We could do this together! So I immediately sent out an email to rally my comrades. I knew not everybody would be in favour but I was sure a good number would be up for the challenge.

I could not believe the underwhelming response!  Everything from hysterical laughter to “Are you kidding me!” to “I would rather give up food”. WTH?!?!?

I did manage to rally a couple of team mates and J2. OK...so I'm paying out of pocket for J2 to join me. I'm a glutton for punishment.

It’s been 12 days. 278 hours. 16,680 minutes. Of course I’m counting!

It’s gone surprisingly smooth with the exception of a couple of ummm “moments”...both Riley World related. I know it is not an excuse. It is our reality. Yet there are still times when the stresses of life with autism can get so overwhelming I am ready to crack. And at those times I’ll admit, for me, a little adult beverage is enough to take the edge off.

So why the heck would I even contemplate such a stupid (“don’t say that word” *in Riley’s voice) idea??? I…I…I got nuthing.

Will I ever do this again?  HELL NO!  Once is most definitely enough. 

17 days and counting…

Looking for a Job...Ready OR .....Not?!?!?

After 15+ years in Riley World, we have come to grips with the reality that Riley will always need some type of support.

One of the questions we are often asked is whether or not we think R will ever be able to get a job. A paying job. I would like to think at some point…yes. What that would look like is a whole other thing.

Yesterday I needed some help putting 2200 tickets together in batches of 50. In my mind…this was a job for Riley-man!! He is a whiz when it comes to numbers and putting things in order. The only hurdle would be to convince him. 

The conversation went like this:

Me:       Riley…I need your help today.

R:         *giving me the side eye*

Me:       I need you to help me put some tickets in order.

R:         I’ll be whining!

Me:       Well…you can either go out on an adventure with dad or stay home and help me.

R:         *thinking*

Me:       ………

R:         Stay home and help you.

Before you think “oh how sweet…he wants to stay and help you”…no. No. That’s not it at all. Riley will do/say just about anything in order to stay home. This was followed with:

R:         I’LL BE WHINING!!

Me:       If you stay home…no whining otherwise you have to go out.

R:         *speaking quietly*  Just stay home.

A little later at R’s request…the McD’s card was thrown in as an incentive. ‘Doing a good job and no whining’ were the terms of G picking up a medium fries in a small brown bag on his way home.

I set up the tickets, demonstrated what needed to be done and after a few adjustments Riley was on his way. He managed to work for 45 minutes putting together 25 packets of 50 tickets. The only challenge “I” had was R scripting almost the entire time. 45 looooong minutes. Here. Watch and see:

In this next clip you will see where R dropped a couple of tickets and checked the numbers before placing them back on the pile (55 second mark) and how he stopped on his own when he hit 400. Yes I was impressed. :D

After 45 minutes I had had enough I let Riley off the hook. You watched and heard the video right???  

Less than 2 months shy of turning 21, Riley is not ready for all the responsibilities and independence required in getting and keeping a paid job. For now…that’s okay. We will keep working towards this goal through volunteering and work experience. 

I Made My 1st Meme...#WordlessWednesday

Aging Out...

Image: freedigitalphotos.net   

What is Riley going to do now?

Have you thought about what Riley will do in the future?

Do you think Riley will ever be able to live on his own?

All valid questions.

Questions that I have thought about all too often yet have pushed to the back of my mind because it caused me to hyperventilate in years past. OK. I still hyperventilate.

Only now…we are there.  Or here.  Right now. *grabs brown paper bag*

Riley finished high school and turned 19 at the end of June. After 14+ years of ups and downs; forwards and backwards; challenges and successes in Riley World; we were all done. So we decided to take the summer off. A hiatus…sabbatical…if you will.

Then September came.

It has now been 3 weeks since what would have been the start of school for Riley. We are in the process of getting services/funding organized but this all takes time. In the meantime I decided we would work on his diet, some life skills at home, continue some type of work experience 2-3 times/week as well as community outings 4-5 times/week. It has been a change in our daily routine. A significant change. He is home full time and for safety reasons he can not be left at home alone. 

Something Different.  Not unusual in Riley World. We have been doing something different for over 14 years. Yet something WAS very different and I could not seem to put my finger on it.

Image Credit:  freedigitalphotos.net 

I am old. There. I said it.

OK so not old old. Just old enough that I am well…just tired. Not tired as in not enough sleep kind of tired like when he was little OR tired/exhausted from the emotional and physical roller coaster during the early years of Riley World. Just tired of doing stuff.

Last week I was sitting in a Transition Committee meeting with area school district personnel, representatives from community societies/government agencies and parent advocates. After the meeting was over I sat talking with a few of them. We decided that Riley and I are taking a “Gap Year” of sorts. Heck. Lots of kids took a gap year after high school. Right??

Yes. Yes…I liked it! I felt as if a load had been lifted. I felt refreshed. Ahhhhh...  

So for the next year I will be blogging about Our Adventures with Riley: The “Gap Year”!  Should be interesting to say the least.   :)

Why Operation IFO??? Let Me Explain...

Riley World is into its second week of Operation IFO (Increase Food Options). It has been all consuming. All I can think about, tweet about, FB about is Operation IFO.

I should have probably explained why I decided to begin Operation IFO before blasting you with updates and blog posts every waking minute. Heaven knows we do not need the authorities knocking on our door. Jooooo-king people.

Riley’s “menu” has been ummmm limited from the very beginning. For reasons that have sometimes been out of our control (weight loss due to seizures) and well life in general…over the last 4-5 years, as long as Riley would eat something...anything...we were appeased. 

Just to give you an idea of R's limited menu…here is THE list of foods R eats now or has eaten in the past:

Breakfast:

            Now:

·         Cheerios (original; dry)

·         Pancakes (occasionally – plain, no butter or syrup)

In the past:

·         White “toast” (lightly browned with a touch of butter)

Lunch:

            Now:

·         Hot dogs (sans bun)

·         Perogies (Cheemo brand – potato and cheddar cheese; preferably bite-size)

·         Mr. Noodles brand only - chicken flavour

In the past: (none of these were desirables but R would “eat” them)

·         Carrot soup (homemade pureed)

·         Ham or chicken “sandwich”:  two slices of white bread (no crusts or any sign of brown edges) with a single, see-through slice of deli meat.

·         Cheese Pizza

Introduced but not on a regular basis:

·         Hot dogs (with bun)

·         Plain McD’s hamburger/chicken McNuggets

Dinner:

            Now:

·         Lipton’s Chicken Noodle Soup:  as few noodles as possible; I add small cubes of tofu and 2 eggs swirled into the soup.

·         A modified Oyako-donburi (Japanese rice bowl dish): chicken broth with small cubes of tofu and 2 eggs swirled into the broth served over Japanese sticky rice.

·         Perogies

·         Mashed potatoes, carrots with a few bites of turkey/ham (special occasion dinners)

·         Mr. Noodles

·         Udon (plain)

In the past: 

I used to prepare at least 1 food item plus rice or potato that R would eat so we could eat all together. That one food item may just be carrots. Pasta was never a desirable but R would eat a minimal amount usually followed by soup or Mr. Noodles.

           

Snacks:

            Now:

·         Cheerios (original; dry)

·         McDonald's French Fries

·         Arrowroot (aka baby) cookies

·         Lay’s Salt & Vinegar chips (crushed)

·         Minigo (to take his meds)

Occasionally:

·         Rice cakes (butter popcorn flavour – Quaker brand only)

·        Cheddar Fish Crackers

·        Mini Ritz original crackers

·         Baby apricots (on vacation only)

·         Orange popsicles (only orange)

In the past:

·         Grapes (red or green)

·         Apples (peeled and cut into 8ths)

·         Orange sherbet

This list is pretty dismal isn’t it? I racked my brains to come up with any other food items that Riley will eat/has eaten over the past 19 years as surely I must be missing some things. I even asked G. He added a few items that I had forgotten but this seems to be it.

Hard to believe he has managed to survive over the last 19 years. So why/how did I let R’s food choices slide so far backwards? Well as Bec at Snagglebox writes in her post “How to Help a Selective Eater”… “Life with a restrictive eater can be really, really frustrating. But as long as they’re eating something, does it really need to be at the top of your list of things to tackle?”  For us…these past 4-5 years…it absolutely was not at the top of our list.

So what has changed? Well now that we are entering a new phase in Riley World, we have the time, energy and I am ready to tackle my old nemesis. Let the Games Begin!!  

Image from MorgueFile

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

Riley World meets "Survivor"

via Wikimedia Commons

As I sat at the sewing machine yesterday trying to piece together sleeves that were literally hanging by a thread 

and side seams picked apart to fashion a poncho of years gone by…

OK so this was a little more drastic...

Ummmm...that would be the back panel on the right.

I thought to myself how Riley World was much like the TV series “Survivor”.

Was this R’s way of telling me he did not “like” a particular shirt?? OR

Maybe it was something sensory (itchy, scratchy, clingy)??  OR

MAYBE he had heard of the campaign to boycott Abercrombie & Fitch and to show his support decided to also boycott his Hollister (a division of A&F) t-shirts too?!?

To think that Riley could be interested in current events and further more support a boycott of the fashion retailer...I only had to look a few shirts further into the pile of destruction to discover t-shirts by American Eagle, Aeropostale and Quiksilver. Riley, it appeared, was unbiased and would not discriminate. No retailer was safe.

Whatever his reasons he left me dazed and confused. OUTWIT me???  Indeed he did.

However after 15 seasons of Survivor: Riley World Edition…I would persevere. Having almost failed the sewing portion of Home Economics in Grade 8, I needed to come up with a game plan.

I could throw out all the t-shirts and go buy new ones but that was hardly practical especially since some were almost brand new.

I could take them to a seamstress and have them sew together the pieces but this would be rather costly and again impractical.

Being the “practical” person that I am I decided I would thread the needle and repair the shirts myself. I know. WTH was I thinking?!?!

First I would need a sewing machine. Do you know how expensive sewing machines can be? I had no idea. Instead I found this handy, dandy, handheld model. Surely this would do the trick.

Again...WTH was I thinking!!!

Heck I could pull out the "stitching" made by this gizmo with my big toe alone!

Thankfully my sister had a machine hanging around her house for those little mending jobs and she offered to let us store use it. It now resides on the corner of our dining room table.

The "Brother" has been no match for R...so far.  Eeep!

OUTPLAY?  Think this one goes to me. 

For those of you who are questioning WHY???  Why indeed. But if history repeats itself (and I am pretty sure it will) with all things Riley World as long as it is not a safety issue…this too shall pass. In the meantime I will keep mending the t-shirt puzzle pieces together with the exception of ones like this…

I...I...have no words. Yes that is the collar in the middle.

OUTLAST??  I am almost 53 years old and do not care anymore  have pretty much given up  have discovered inner peace and serenity now. You better believe I got this one!

Turning 19...

adult

adjective

1.having attained full size and strength; grown up; mature: an adult person, animal, or  plant.

2. of, pertaining to, or befitting adults.

3. intended for adults; not suitable for children: adult entertainment.

noun

4. a person who is fully grown or developed or of age.

5. a full-grown animal or plant.

6. a person who has attained the age of maturity as specified by law.

Nineteen (19) is the age of majority ("when minors cease to legally be considered children and assume control over their persons, actions, and decisions, thereby terminating the legal control and legal responsibilities of their parents or guardian over and for them”) as recognized in law where we live. For the majority it is the age when you become an adult or are no longer considered a child.  For. The. Majority.  Three words that make all the difference in Riley World.

Age is just a chronological number in Riley World. A number, in those early years, that would cause a great deal of stress and anxiety for me. Yes me. A number associated with so many benchmarks and milestones that Riley World never participated in.

Physically? Yes. R would be considered an adult. If you saw R walking down the street you would not think twice. Ok perhaps you might look twice especially if he were doing his “Mario” walk or scripting from a favourite Disney movie otherwise…probably not. 

Yet there is so much more to consider when you have a special needs child who turns the age of majority. For us Riley will not be going to post-secondary school. Riley will not be getting a driver’s license. However Riley will be doing things differently just as he always has.

We do hope that eventually Riley will be able to get some type of meaningful work. We do hope that Riley will someday be able to live semi-independently apart from us. We do have a lot of work ahead of us. Hold me. *sob sob*

In the meantime at 19 when the majority of kids are ready to go out and celebrate at their local “drinking establishment” Riley celebrated at home with family. We surprised him with his list of about a dozen DVD's and 2 cases and a six pack…of soda pop. After almost 15 years living in Riley World as long as Riley is happy...we are happy. I will let you be the judge…do you think he was happy??