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.   :)

A Balancing Act...

As frustrating it can be for both Riley and me…we are trying to "stay the course". The setback with his mouth this past weekend has meant that I needed to regroup and try to hold steady without pushing R over the edge.

What does this mean??  Well…“Something Different” would be a definite NO-NO! Yet we still want to keep our options open.

One meal a day with a reintroduced food??  Sure. That would work.

One meal a day all together. Even better. The fact that he is finished before I sit down…minor detail.  

So yesterday at lunch I decided to give Carrot soup Bisque another go. I even bought fresh crackers and added grapes for a well-balanced meal. Work with me. 

Since I was not eating but wanted to keep R company I sat at the table with his iPad. Remember no eye contact works best.

I could feel his eyes on me. Willing me to look at him. Waiting to pounce. I forced my eyes to stay focussed on the iPad.

The grapes were first. They were the most desirable of the 3. When he was almost finished I faltered. Eye contact.

“I'm not feeling well to eat.” (Pointing at crackers)

Drats. Trying to think on the fly…”Can I try a cracker??”  Hey. I never said I was good at thinking on the fly.

“Sure. That’s sounds good to me.”  Phew. Crisis averted. Crackers consumed.

Next came “I'm not feeling well to eat soup.”

Do NOT engage. Focus all attention on the iPad. Avoid eye contact at all costs. 

Several seconds pass before Riley finally succumbs and takes his first spoonful of soup. The sound of teeth scraping soup off the spoon is almost too much for me to bear. Almost.

As frustrating as it was, I stayed focused on the iPad. Candy Crush...Stupidest. Game. EVV.VER!!!

“Oh Gretel I'm so hungry.”  Scrape, scrape, scrape.

“I don't feel well at all to eat.”  Scrape, scrape, scrape. Slight gag and possibly a few tears in his eyes.

At this point R had eaten about half the bowl and to be honest…“I” was done.

“How about 10 more and you are finished.”

“Ohhh-kay. That sounds good to me.”


Has it really only been 21 days!!!  *sigh*

Holding Steady...

Image Credit

You may have noticed the lack of updates here and on Facebook this past week.  You.  Did.  Notice.  Right??? 

We started Operation IFO three weeks ago. Twenty-one days. Plus or minus fifty meals. 

We had success sooner than I would have ever dreamed of…on Day 7. 

We were shocked most pleasantly surprised to see how Riley has, with age, developed negotiating skills (with video to boot) and a maturity to take on this latest challenge without the meltdowns that we knew too well when he was little.

Unfortunately this past weekend a dreaded canker sore came into play. I was not able to catch it in time and once again Riley’s lips look larger than a pouting Mike Jagger. Only raw, irritated and inflamed. Ouch.   

So in order to keep the peace we are in a holding pattern. Hopefully in the next week or so we can carry on to Stage 2: Condiments and Sauces of Operation IFO.

I hope you will stay tuned…

Mouth-watering Meals......Stage 1 #Operation IFO #Wordless Wednesday

Monday Macaroni Madness #Operation IFO

So how was everybody’s weekend? After 7-1/2 hours of work (out of the house) over 2 days last week I decided a quiet weekend was in order. After all, I have 3 more days (ok…so they are only half days…still…haaallloo) to go. 

Last Monday I took some video of Operation IFO. Then we had a breakthrough the following day and I never got around to posting it.

I tried to be inconspicuous and had the camera on the kitchen island in the hopes of recording R’s disgruntled dialogue. Instead, and much to my surprise, if you listen closely you will hear Riley’s negotiating tactics.

If you can't see the video, click here to play.

When I moved the camera in order to capture R’s pinpoint accuracy at picking up one macaroni at a time in a piston-like manner…he was less than pleased. 

In order to maintain peace in Riley World this will be the only recorded evidence and hopefully one of the last blog posts of Operation IFO. One can only hope.

Have a great week!  

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

Day 7 of Operation IFO...... A Breakthrough!!!

I know I promised I would not write another post about Operation IFO (Increase Food Options) but we have had a breakthrough. Already!!!

I am OVER. THE. MOON!!!!!  I am almost shaking and giddy with excitement! I am not sure if the moon and stars have aligned or, as my friend Marj posted yesterday on FB...

a sign of the apocalypse…all I know is today at lunch G and I witnessed a phenomenon in Riley World.

Today was Day 7 of Operation IFO (Increase Food Options). For at least one meal a day I have been trying to reintroduce Riley to a food item that he used to “eat”. Just as a reminder to those with young kidlets…Riley is 19. When he was younger we lived in survival mode (at times) and most definitely on a day-to-day basis. The thought of taking on his food challenges was not even on the radar back then. 

For the most part things have been going relatively well.

Today we were going to be out at lunch so what better opportunity to try eating out. In preparation the conversation went like this:

Me:       I have to go to work for a while.

R:         I’ll just stay home.

Me:       You and dad can go for a walk and then we can go for lunch together.

R:         I’LL BE WHINING!!

Me:       We can go to Pizza Hut for lunch OR we can come home and I can make you pizza for lunch.

R:         Just go to Pizza Hut. (muttering away to himself)

And away we went.

We arrive at Pizza Hut early so we were the only ones there. Perfect. We ordered our food and Riley watched his iTouch and ate his Cheerios while we waited. I warned Riley that the pizza would be hot so he would have to wait a bit before he could eat it. Grumbling/muttering ensued. G and I resumed our no eye contact/no verbal interaction stance.

The pizza arrived.

I put half the pizza (2 small personal sized pieces) onto his plate. I cut the quartered pieces in half (to cool quicker) and in hopes that he would eat them as is. 

Now when Riley was younger he used to pick off the bottom “crust” and only eat the soft, bready part and some of the cheese. When he was finished it was pretty hard to tell whether or not he had actually eaten anything since there were so many remnants left over. Oish. 

G and I held our breath as Riley picked up the first piece.

He inspected the first piece and picked at a few brown bits. Not surprising.

He bit into the topping (cheese) of the pizza.  Oh nooooo. Reeeelax. It’s only his 1^st piece.

He ate a bit of crust.  This is good. Very, VERY good! (all the while making sure not to make any eye contact with R)

He finished his first eighth!!!  YES!!!

When he was on his last piece, without saying a word I put another piece on his plate. I was waiting for the fallout. Nothing happened. What’s going on?!?!? I did not dare look so I glanced over at G. He had the “OMG! WTH is going on!” look in his eyes too. We sat in silence. Eating. Like regular people. Only not talking or having any interaction of any kind. That’s OK. That will come.

I put the last piece of pizza on R’s plate. This was what was left.

I was pretty sure the gates opened up and music started to play.  :D

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

First Day of School 2013!

Where we live today marks the first day of school. In the past I have taken pictures of the boys as they headed off to school after the summer. In. The. Past. Those three words almost make me giddy. Almost.

Here is the picture I took this morning just after I woke up. 

That’s right. No first day of school in this house any more. I would have taken a picture of how excited I was but I was very scary looking. VERY scary and some things you just can not unsee. You are welcome.

I am hoping to get back into some sort of routine this week. No promises though. Where did the summer go?!?!?