If it still sells...don't change it!

 My latest meme…

And if you think this “NEW” recipe has the SAME GREAT TASTE…you would BE WRONG!!! 

You often read about children with autism being “picky” eaters. Picky sounds so negative so I prefer to think of Riley as a “particular” eater.

Picky is defined as “extremely fussy”. 

Fussy is defined as “hard to satisfy or please; a fussy eater”. 

Particular is defined as “exceptionally selective, attentive or exacting; to be particular about one’s food”. OK so this definition is number 7 on the list but it actually does refer to food in the description.

“Exceptionally selective”...Yup, that is definitely an accurate description of Riley’s eating habits.

Have you ever heard of a “supertaster”??  I had not until about 5 years ago even though it was a term coined in the early 1990’s.

“A supertaster is a person who experiences the sense of taste with far greater intensity than average, with some studies showing an increased sensitivity to bitter tastes. It may be a cause of selective eating.”  ~Wikipedia

As with “supertasters”, individuals with autism may have sensory issues towards certain foods that are hard to pinpoint especially in cases where communication is a challenge.

When Riley was little, the minutest change in taste/appearance (even the packaging) of a preferred food could trigger a meltdown for him and a need for copious amounts of alcohol for me. With an already limited diet, decreasing by even one food item was stressful.

I posted this meme on Facebook and was touched by the number of offers to help track down boxes of the “original recipe” Lipton’s Chicken Noodle Soup. Trust me…10 years ago I would’ve jumped on your kind offers.

While I still gasp and my heart may miss a beat (due to PTAD aka post traumatic autism disorder) when I notice “something different”, I don't immediately go into full blown panic mode anymore. Why??  Maybe it's age and maturity on my part. Hmmmm...I doubt that. Perhaps it's because I have figured out the secret to Riley World. Definitely not. Probably more like I am old and tired. 

I believe the real reason is that Riley has aged and matured and is now able to cope/manage changes without the tears and screams of frustration from his younger years. 

Sure, there is still a lot of gagging/dry-heaving but hey…one thing at a time right???

 

 

It’s been one of “THOSE” days!!!

Today has been an autism kinda day in Riley World. What do I mean by that???  Well after a few other "incidents" we had this little conversation:

R:  It’s missing.

Me:  What’s missing?

R:  One is missing.

Me:  One what??

R:  Mr. Noodles. One is gone.

Me:  ?!?!?  Where?

R:  Downstairs.

Me:  Show me.

Off we go. 

Yes there are 5 boxes of Mr. Noodles.

Yes that is 60 packages.

No this is not unusual. Sometimes there are even more. 

I buy the boxes in multiples of 4 for a discount.

If you will notice...there are only 11 packages in this box.

Let me explain. R likes to have 2 servings (2 packs per serving) of Mr. Noodles every night after his shower. Routine. Habit. Whatever. As long as he ate, G made them. We started to cut back to 1-1/2 packs per serving as R started leaving a fair amount untouched. G would "hide" the extra packs in the corner cabinet and make up boxes downstairs and add the made-up boxes to the pile. I know what you're thinking. How could G be so stupid as to only put 11 packs in the box!?!   ;P  

I am not sure how long or when Riley noticed that one package was missing but today was the day that he let me know it was missing. Can you spot the box with the missing package???

How about now???

Much easier to spot in this picture don't you think?

The angle is much better.


Whaaaat??  You can't spot it?!?!? 


Here...


Let me help you...

Now if you'll excuse me...to hell with "W.O.W." (aka Wine on Weekends). Pour me a bottle...or three.  

Celebrating "PUPPY"

For the past 19 years Riley has had a constant companion in a floppy, once-stuffed dog named “puppy”. A gift from his Auntie Trudy for R’s first Christmas which became “THAT Special Toy”.

In the early years puppy went pretty much everywhere with Riley. 


On special occasions puppy even got to snack with Riley. 

Camping and other family vacations would not be complete without puppy.

As Riley got older and went off to school puppy got used to staying at home. Riley would place him gently on the stairs, snuggle his face into his body and breathe in puppy’s scent before heading out the door.

After 10+ years of hard loving, puppy started to break down. It was the Christmas of 2006. I was now a seasoned autism mom. I knew exactly what made Riley tick. Yup yup yup. I knew. All I had to do was replace “THAT Special Toy”.

Look how excited Riley is!!!

For the next 7 years (less 1 day) puppy took up residence (for the most part) on Riley’s shoulder.

At the beginning of November 2013, I discovered what turned out to be stuffing in Riley’s bedroom. After some investigation I realized Riley had tried to ‘destuff’ the replacement puppy. A surgeon Riley will never be. Did Riley sense the demise of puppy??? 

Puppy’s tattered and dilapidated body had become a tangled mess. Riley would shake, twist and untwist its threadbare body to no avail. Then on Christmas Eve day of this year (2013), G discovered the remnants of puppy in our bathroom garbage. *GASP* 

I am almost certain Riley tried to detangle puppy with his trusty scissors. 

A little snip here led to another snip there……  

The next morning......

It was as if Riley was trying to piece puppy together.  :(  

R:    You can fix it???

Me:  Ummm. No. I’m sorry. I can’t fix puppy.

R:    *Picking at the pieces*   You can’t fix puppy. (in his sad voice)

Me:  No. I can’t. It’s too wrecked. 

R:    It’s too wrecked. I wrecked it.

Me.  Yes. You cut puppy into too many pieces. I’m sorry Riley.

As the day passed, Riley would pass by the pieces, pick them up, smell them and sadly walk away. Why did I not just throw them away??? Well as you know I am a seasoned autism mom and one of the top 10 rules of autism is never, EVER throw anything away unless you have stored it for at least 10 years. EVER!!!  

We finally decided that Riley would give the replacement puppy a try. I would put my grade 8 sewing skills to the test and try and patch up new puppy.

VOILA!!!

Part of me thought perhaps this would have been a good time to naturally transition away from puppy. Yet another part of me had a hard time letting go. Puppy had brought so much comfort and security to Riley. Whether it was in his backpack under the seat in front of him on a plane or in a hotel room waiting for him to return from a day's outing; puppy was the one constant that gave Riley a sense of calm and order. Had we not had new puppy waiting in the wings, the choice would have been simpler. Not easier. Simpler. We would have no choice but to move on.

Was I doing the right thing?? Maybe at 19 Riley should not have a “puppy” or “blankie”. Any doubts I had were put to rest when we were at my sister’s for Christmas dinner this year. There on the arm of the couch was a well worn part of a quilt. It was my niece’s. It was her “blankie”. She is 20. J2 still has his “blankie” on his bed. He will be 21 in less than 2 weeks. For now Riley seems to have taken to new puppy…only time will tell.

Did you or does your child(ren) have something they are/were attached to??  How did you/they let go? 

   

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 CAN'T He Keep his Wisdom Teeth???

A week today Riley is scheduled to have his wisdom teeth extracted! YIKES! Actually that is putting it mildly.  I am starting to panic. Thankfully the procedure will be done under general anaesthetic. I am hoping there will be some type of sedation for me as well.  ;P

Now over the years Riley has come a long way since his first visit to the dentist. We had a consultation with the dental surgeon a month or so ago and R sat in the chair looking almost comfortable. Pretty sure after our next appointment he won’t be looking forward to any future visits there!

It is not so much the procedure that I am getting nervous about at this point. Riley has been put under for dental work before. Oh I just want to mention the last time R was sedated for a medical procedure about a year ago, when he came out of it...uhhhh...let’s just say there were a number of "colourful" words spewing from his mouth in, of course, his "outside" voice.  Oish.  It is the post-op/recovery days that are freaking me out. It is the part where he has to ice his face, gargle and rinse to prevent infection and hoping…no...praying he won’t gnaw at the stitches in his mouth. I need to stop now as I am starting to hyperventilate. 

So in preparation I will be phoning ahead to our local “beverage” store to place my order for certain necessities to get me through next weekend. Until then…I will be in my cave cowering in the corner. 

Wish us luck!  D 

Summer "Fun"... Laundry

WE ARE ON A ROLL PEOPLE!!!  A little cranky?  Ummm…yup.  A little grumpy?  Oh that would most definitely be a yes!  Yet here we are at just the second week of summer and we have tackled laundry!  Thank you.

Now I will admit that I am somewhat “particular” about doing laundry so would actually prefer to do it myself. I kid you not. But we are on a mission here. For Riley’s first attempt I wanted to start with the basics so decided to go with nothing but socks and underwear.  Wash.  Dry.  Fold.  DONE!  Sorting will be up next followed by the merits of damp drying specific articles of clothing later this summer.

Only about 2/3 of R's underwear

We started by gathering R’s socks and underwear. ALL 27 pairs of underwear and umpteen pairs of socks. I am NOT kidding. Yes I counted.
9 pairs of black/dark blue; 9 pairs of grey; 9 pairs of white; Fruit of the Loom; Calvin Klein; and Jockey. Why so many???  Well it is that darn autism thing again. I am never sure what he will wear and then must introduce new ones gradually because of course I can never find the exact. same. ones. ever. again! The downside is of course I am never exactly sure which ones he wears and which ones he just throws in the laundry because he does not want them in his drawer?!? The result…27 pairs of underwear, give or take a few, at any given time.

We gather the rest of the family’s personal items and head downstairs. R carried the laundry basket all the while muttering about it being “summer time”. Remember I told him we would start chores in the “summer”. I am quite certain he will never look forward to summer again.

I demonstrate how to start the washer, add detergent and then have him put in the laundry. Just like that we are done. Even R was surprised at how easy that was. Step 1...done. Up we go.

In case you wondered, that is NOT me and Riley in the picture. That would be the winner of this year's Mother of the Year Award. What-EH-VER! 

The buzzer sounds so I call R. Time to switch things from the washer to the dryer. I open the lid and demonstrate this next step. I tell R it is his turn. He looks in the washer, gingerly puts his hand in and says with disgust
“It’s yucky!” For Riley his tactile sensitivities are on high alert. To give you some idea of what that is for R…imagine someone telling you to put your hand into a barrel with some unknown substance and that you must empty the barrel using only your bare hands. You have no idea what it is going to feel like, what is in there, or whether or not it might hurt you.

I talk him through it explaining the clothes are just a bit wet yadda yadda yadda. Oh how I wish I had recorded R’s dialogue during this step. Think grumpy, agitated, and a lot little on the loud side…“It’s yucky.  Watch me.  Come out you stupid underwear.  This is stupid.  Stupid underwear.  Watch me now.  It’s summer time.  I don’t like it.  I’m grumpy.  Get in there you stupid underwear.” Any of the previous statements are repeated over and over until he is finished loading the dryer. Step 2 of 3...finished at last! 

Thankfully the final step of folding was done with minimal grumbling. The only hitch being some of his underwear were "backwards" (aka inside out) which R managed to problem solve on his own. Yay!  Load 1...complete!

Bonus: Riley happily took his laundry upstairs and put it away. 

Double Bonus:  Figured out he does not like his Calvin's any more. Found 8 pairs in his laundry basket untouched the next morning.


How is your summer going so far???

Good vs. Not-so-Good Surprises

Surprises in Riley World have evolved considerably over the years.  What could have been a trigger for a meltdown when he was 4 or 5, became upsetting at age 10, tolerable at 13 and manageable at 15.  What brought about these changes?  Honestly, I really can’t say for sure.  I think it was a variety of things.  Some of it was due to maturity, some things we worked on consciously and a LOT we discovered by fluke.  ;P       

Here are a few examples that can still send shivers up and down my spine:

Good Surprise:   Bringing home McDonald’s for R when he wasn’t expecting it.

Not-so-Good:     Opening the bag to realize they packed a “Large” fries instead of a “Medium” fries.

Good Surprise:   Finding all but one of the Land Before Time plushies.

(I buy them anyways hoping he won’t notice…are you kidding…OF COURSE HE’LL NOTICE!)

Not-so-Good:     Getting all but one of the Land Before Time plushies. 

(YES HE NOTICED…AND he kept asking where the other one was!!!)   

Good Surprise:   Staying in a hotel with a pool.

Not-so-Good:     Heading to the pool (R has goggles on of course) only to find the pool is closed for maintenance.

Good Surprise:   Watching his favourite movie on a handheld device when you’re out.

Not-so-Good:     The battery dies after 10 minutes.

And finally, R’s latest “obsession”:

Good Surprise:    Getting the free Realtor pads of paper used as advertisement.

Better Surprise:  Getting the “Kasha Riddle” pads of paper (she uses glossy paper!)

Not-so-Good:      Getting the pads of paper that aren’t the “right” size.

Although R can still have difficulty expressing his wants/needs verbally, the “not-so-good” surprises are usually “manageable” and fewer and farther between.  I never thought I would agree with the saying “This too shall pass”…yet the possibility doesn’t see so far fetched anymore.

D  

Ready or Not...Here We Come!!!

In less than 2 days we leave for a family reunion (G’s side) and to celebrate New Year’s at an all-inclusive in Mexico.  Ole!  Up to now we have never travelled outside of Canada/US with R.  Even travelling south of the border could be stressful.  Did you know that, for instance, Lay’s Salt & Vinegar potato chips are packaged in a greeny-blue bag in Canada and a turquoisy-blue bag in the US.  While this may or may not be an issue for most of us…it has been an issue for R.  The bag is “different” therefore the chips must be “different” therefore he doesn’t want them.  

When we all decided the destination would be Mexico, I was excited (I’ve never been to an all-inclusive or the east coast of Mexico), then nervous (what would R eat???), then went into problem-solving mode (we would need suitcases…HUGE suitcases in order to transport a weeks worth of food/cooking supplies).  Of course, I will carry-on the all important “small sieve” for the seasoning packets of Mr. Noodles as, mentioned in my Random Thoughts posting, any visible flecks of green are unacceptable.  As I highly doubt there is a Wal-Mart close by…we will also be packing “back-ups” for most of R’s electronics /accessories that could conceivably break down.

R has been SO focused on “waiting patiently to open his presents” that I had a hard time finding the right moment to tell him we would be going away on vacation to someplace "different".  I mean really…why get him fixated on more than one thing at a time?!?!?  As Riley’s gotten older we can sometimes operate on a “need to know” basis for certain “desirables”.  Even still, being the coward that I am, I waited until after lunch yesterday (Christmas day) when he was upstairs preoccupied with his multitude of new DVD’s before “adjusting” his visual schedule to show going on an airplane and vacation (thankfully both much desired activities).  Luckily putting up new PCS (Picture Communication Symbols) does not involve ripping Velcro, is therefore silent and can be done without R noticing…that is until he walks by. 

He immediately noticed his schedule and muttered to himself “YOU are going away on vacation”.  When I answered enthusiastically with “No, WE are going on vacation TOGETHER on a BIG airplane!”…R responded with “Yahoooo we’re going on a big airplane!”  Not quite sure when I’m going to break it to him it’s going to be a 5-1/2 hour flight.  Oish. 

Five years ago the idea of going outside of North America would’ve never crossed my mind.  So what’s changed?  Over the years R has continued to grow and mature.  We are also very fortunate to have the unconditional support of family and friends which has allowed us the flexibility to try new and different things.  Knowing we could ask for help and being offered help with things like R’s food means so much.  Who knows…maybe R will even acquire a taste for Mexican food and it’ll open up a whole new world of dining experiences when we come home. 

Adios, D  

Sign-up for Updates

I learn something new every day.

If you would like to receive notice by e-mail when I’ve updated my blog, you can sign-up via the “Follow by Email” box on the right.

It’s a fairly painless process to sign up…about two steps. You will only receive an e-mail if I update my blog. Not to worry…if I make more than one update a day (highly unlikely), it will only send you one e-mail per day.

When you receive the e-mail, you can either link back to “Our Adventures with Riley” blog by clicking on the title or read the update which will appear in the text of the e-mail.

I hope you will sign-up to receive updates of my gripping stories of "Our Adventures with Riley".

Thanks, D

"Something Different!!!"

I’ve been a little preoccupied this past week with a “paying” job!  Sure cuts into my “me” time.  Tee hee.  Anyways, I’m sure you were curious to see what was going to be different this week.  Perhaps some type of interactive game?  3D movie?? or even better…a “different” look???  So as not to disappoint, I went with the “different” look!!!

Why the big to-do about “something different”?  Well when R was younger, anything “new and different” in Riley World was usually cause for a valium and magnum of wine in my world.  While most kids love getting new things and being surprised at birthdays, Christmas or any other special occasion…Riley…not so much.  So I’m sure you can imagine just how excited he would be when a “surprise” fire drill would happen at school.  Not a pretty sight. 

One of the many strategies FG introduced us to was a visual schedule using PCS (Picture Communication Symbols – an example being the picture in the previous post).  This worked particularly well with R.  He’s had a visual schedule at home since early elementary school and it still has its place on our fridge.  He has innate hearing for ripping Velcro and will drop everything and come running from anywhere in the house.  Heaven forbid you try and change it without him knowing and one of the reasons no one in our house wears any type of Velcro shoes. 

As R’s gotten older and has experienced more “new and different” things, his ability to cope with “something different” has increased considerably.  Preparation is key even though, as with anything, things can go sideways at the most unexpected time only thankfully now...not nearly as often. 

Something to think about…D

Watch for Something DIFFERENT this Week!

Taking a Detour

I was having a little trouble this week deciding on what to post next.  After all, although I have over 15 years of “adventures” to share with you, not all are as humorous and memorable.  I certainly wouldn’t want to appear as if our life is just full of Mr. Bean antics all the time.

I believe I mentioned sharing all my wisdom, knowledge, insights and theories in my first posting and I’m sure you’ve been waiting with eager anticipation for something wise and insightful.  While this isn’t something I’ve written, I absolutely LOVE this story!  I first read it shortly after R was diagnosed with autism and although it isn’t directly about R, I never would’ve read it without him.  This put into words exactly how I was feeling at the time.

When I read it now I don’t cry any more; I realize how very lucky I am to have friends who don’t brag; time does help with the loss of anyone near and dear to us; and although I’ve never been to Holland…detours are just part of the adventure.  Enjoy!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

Think about it…D