Monday, 26 December 2011

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  

Saturday, 24 December 2011

Have Yourself a Merry Christmas!!!

It's Christmas Eve and as you can see our tree is sans gifts until R goes to bed in about 6 hours.  Soon all the "waiting patiently to open his presents" will finally be over. 

Have a wonderful time with family & friends this holiday season.  Eat lots, laugh lots and be merry lots! 

Cheers, D, G, J1, J2 & Riley

Monday, 19 December 2011

Monday Meltdown

Remember how excited I was on Saturday morning that school was out for the holidays?  Well it’s only Monday night and I’m thinking perhaps having an entire week off before Christmas isn’t such a great idea after all.  R’s patience is wearing thin already.  In his mind…school’s out; the holidays are here; he has been “waiting patiently to open his presents” long enough. 

Now there is only so much a person can handle before one loses it.  Who knows exactly when, where, how or why it happens?  It just does and of course you are never prepared.  Tonight was one of those nights…unfortunately it was me who cracked.  I mean I knew R was a little cranky tonight.  Why didn’t I just bite my tongue and leave the kitchen after he grumbled at me.  Nooooooooooo. 

Instead I have to prove what a good actor I am.  Whatever R did, I did exactly the same thing.  He yelled at me…I yelled at him.  He slapped the counter…I slapped the counter.  He used his angry voice…I used my angry voice.  He called me stupid and told me to shut up…I called him stupid and told him to shut up.  At about this point I got his attention.  He was definitely caught off guard and responded with “Hey, that’s not nice.” 

I mentioned before how much I love the holiday season.  I consider myself lucky enough to be shopping for presents, thinking about cooking a turkey dinner with all the trimmings and enjoying some lots of holiday cheer with good friends and family.  We all have different kinds of stress and all manage it differently.  Tonight Riley and I both got out our frustrations and came away relatively unscathed (I got a little carried away slapping the granite counter).  Ouch.  If I were to be perfectly honest…I felt pretty relaxed afterwards.  ;P

6 more sleeps…D

Saturday, 17 December 2011

A "Shrektacular" Christmas

We made it!!!  School’s out for the holidays!  Is it just me or is everybody else about ready for a break too?  Decided what better way to start the holidays than with a FF (Fun Friday)!  This is not to be confused with #FF which in “Twitter” lingo stands for “Follow Friday” (something my old brain still has a hard time grasping).  I prefer my definition of FF which involves appies, alcohol and inevitably lots of LOL. 

The three of us (G, R & I) planned to watch the Grinch, Shrek the Halls & Elf together (a very rare request from R) when I got home.  Unfortunately we couldn’t find Shrek the Halls or Elf so R agreed to try “Donkey’s Christmas Shrektacular” since anything Shrek-based is acceptable.  The scene opens with Shrek lighting a fire before guests arrive.  The three of us sat there watching and waiting.  Finally a few characters appeared on the screen, had a very brief scene and disappeared again.  We waited patiently for something else to happen.  After a minute (which is extremely long when nothing’s happening) the same thing happens…characters appear; brief scene; they disappear.  After about 5 minutes of the same thing R gets impatient and "ff’s" to the next brief scene.  This goes on 20 more times!!!  WT*! 

Now had I not been at FF prior to watching the movie, I may have clued in a little quicker than this morning that something was not quite right as opposed to it being a very bad movie.  In my defence, G just thought it was a very bad movie.  Apparently we were watching Shrek’s Yule Log, the description being:  Heat up your holiday party with this hilarious virtual fireplace. 

Can’t believe we sat and watched a kids’ version of Rogers TV Holiday Fireplace for over 10 minutes before turning it off!  *heavy sigh*


Wednesday, 14 December 2011

Ghosts of Christmas Past

Riley's first Christmas with J1 and J2

     Although J1 was born and raised on the west coast,                  At almost a year old, J2 was NOT thrilled
        having both parents who were born on the                          to sit on Santa's knee (neither was Santa  
      prairies he was destined for all things country.                          by the looks of it). Future visits were
        No Santa hat for this 18 month old cowboy.                           ruled out even before Riley came along.


Monday, 12 December 2011

Christmas comes Early in Riley World...

It’s less than 2 weeks to Christmas and R’s portable DVD player has stopped working.  R can be very hard on DVD players (portable or otherwise) and particularly on the remote controls.  It's hard to believe he has difficulty with his fine motor skills when you consider the accuracy required to rewind to the exact same spot or at least within one nanosecond in order to watch the same 3 second sequence over and over again. 

Of course he hasn’t mentioned it’s not working.  The last time he came to tell us his DVD player was broken, we “fixed it” using duct tape (thanks to Uncle Stoo).  Hey…it was only about a month old at the time and just the hinge was broken. 

FYI…duct tape doesn’t last forever.  I found this out when I discovered R’s DVD player propped up against the dresser leg.  Part of me felt bad that he had to do that to watch anything and then I thought…how smart am I!  I’d, albeit unknowingly, presented R with an opportunity to practice his problem-solving skills and he passed with flying colours!  Gosh I’m he’s amazing…tee hee.

Luckily we always have a “spare” player on hand.  I was planning on wrapping it up as one of his Christmas presents (even R can only act so surprised after the 6th package of Mr. Noodles). 

Guess I’ll have to spring for another box of Cheerios.  *sigh*  D

Saturday, 10 December 2011

Random Thoughts...

Not sure whether it’s just the time of year when there are lots of things going on but lately I have been asking myself a lot of questions of no particular importance or relevance.  Then I had an epiphany...what better way to get some answers than through my blog. 

Random Thought #1:  “Why do they have to put green flecks in seasoning packets?”

Has anybody else wondered why there are “green” flecks in seasoning packets?  In particular instant noodles (chicken-flavoured), chicken noodle soup or even chicken bouillon.  I’m sure it happens in beef or veggie flavoured items as well but those are of no concern to me as I don’t buy those flavours.  R only eats chicken flavoured things.  

Why green???  I don’t recall seeing anything green on chickens…at least not on the outside.  Is it supposed to be some type of dark green veggie substitute?  If so…how many green flecks make up 1 serving of vegetables???  Why are the green flecks all different sizes?  I mean why not make them all the same size…uh that would be large as in large enough so you can pick them out easily; large enough so they don’t slip through the sieve you use to catch those little suckers before they appear in R’s bowl.  Lastly…why not make them a less obvious colour?  I’m pretty sure it’s not a “natural” green seasoning. 

Thought…comments…anyone???  D

Thursday, 8 December 2011

That "Special" Toy...

Wouldn’t it be great if you knew just what toy/item your child was going to get attached to?  You know…that one and only thing that will calm them down when they’re upset.  The ‘can’t go to sleep without it’ but you never realized just how attached he was to it until after you get home and remember you forgot it at grandma’s and have to drive back across town to get it because he’s been asking for it for over 45 minutes and you know he’s never going to go to sleep until he gets his hands on it ‘thing’!  Auuugghh…sorry about that.       

I remember mine was a “softy dolly”.  J1 & J2 had “blankies”.  You would find it either crumpled up in a ball under their pillow or under their comforters crammed in at the foot of their bed when they decided it was too babyish to have any more.  Sound familiar???

R’s was a Fisher Price floppy puppy that his Auntie ‘Froody’ (as J2 called her) gave him his first Christmas.  You’ve heard of the saying “Fool me once, shame on you; fool me twice, shame on me”.  Ha…I was no fool…I was going to be proactive.  Before puppy disintegrated any further, I went on the hunt for a backup.  Are you laughing hysterically or just feeling sorry for me about now???  After searching all the toy departments and stores around the city and the Fisher Price website, I had my first experience with ebay.  I could hardly believe my luck when after only a few searches…up it popped…’PUPPY’!!!  You’d have thought I’d won the lotto I was soooo excited!  R would be thrilled.  I was sure of it.  After all he carried puppy everywhere!  You know where this is going right? 

Let’s just say that the original puppy is literally hanging on by a thread and still keeping company with R. 

Happy Shopping!   D

PS…Obviously the parent who sold ‘puppy’ on ebay had been looking for a backup and failed miserably too. 

Sunday, 4 December 2011

The Magic of Christmas

Riley has been “waiting patiently to open his presents” now for exactly 3 days, 10 hours, 21 minutes and 46 seconds.  The magic of Christmas has worn off.  “In my opinion”, he is not waiting patiently to open his presents when he repeats it every time he sees me.  *sigh*

It’s not like he’s asking for anything exorbitant.  As a matter of fact, R wants very little and some of what he wants…I refuse to get for him.  I know that sounds mean and you may even be horrified to hear me say that.  In my defence it is for my own good.  No, that’s not a typo.

I have always been very hung up aware of trying to encourage age-appropriate interests/activities with R.  For whatever reason this year I had a change of heart.  I mean does it really matter that he still wants to watch Disney Sing-a-Long DVD’s at age 17?  Aren’t all things Disney considered “classics”?  Is individually wrapping 6 packages of Mr. Noodles, a box of Cheerio’s and a bag of Salt & Vinegar chips as Christmas presents “age-appropriate”???  I somehow doubt it. 

I know I should be better than this.  But I’m not.  Perhaps more wine will make me better at it.  In the spirit of Christmas…I shall give it a try. 

Cheers, D

Thursday, 1 December 2011

December 1st means Christmas!!!

One of R’s fascinations is with the calendar year.  He likes to recite each month with its significant meaning (birthday, stat holiday, special day or important event to him).  It’s always the same except for the unpredictable Easter weekend. 

R has been “waiting patiently” for December since the summer (that’s when he started his Christmas list).  After all, if it’s December…it’s time for everything Christmas!  It hasn’t always been this way.  When R was little he had NO interest what-so-ever in decorating the tree, opening presents or anything Christmas.  That is…up until he was about 10.  At this age, while most parents are past the stage of having to stand guard before the mayhem of Christmas morning…we were dumbfounded (in a good way) when we heard the ripping of paper one Christmas Eve about 7 or 8 years ago.  Our tree has since remained gift-free until after R goes to bed on the 24th.     

The house lights are up and to quote Riley “Wow. They’re so beautiful!”  We have nothing inflatable Costco snowmen, no lighted animal figures, just a string of lights along the eavestroughs.  There’s something to be said about having a 17 year old who is so excited about the magic of Christmas.  It makes the daily/hourly reminders that he is “waiting patiently to open his presents” that much easier.      

Thank goodness I love Christmas too! 

Think about it…D

Sunday, 27 November 2011

Autism vs. Menopause

I can’t help but notice some similarities between autism and menopause lately.  Of course if you haven’t experienced any form of menopause (pre, peri or post) or never will (the male species) you may not be able to relate to my newest “DOT” (definition: D’s personal theory).  To keep this posting from dragging on and on, I’m only going to comment from my perspective as a person with menopause. 

#1 - Preference for routine…less flexibility:  I was going to have a shower the other morning and noticed that G had cleaned the tub.  Whoa…whoa ladies…I’m sure some of you are thinking how wonderful G must be to be cleaning bathrooms.  Trust me when I say there is not enough space on the World Wide Web so don’t get me started on the topic of G! 

Anyways, I started to wash my hair.  For some reason I was unable to get any kind lather happening.  I was very confused?!?  Thoughts went through my mind… I did wash my hair yesterday; it shouldn’t be that dirty…I don’t think I used a lot of product.   It took me a couple of minutes before I realized I had grabbed the wrong bottle…yes, I was trying to wash my hair with conditioner.  Obviously G had overlooked the fact that the shampoo bottle should be ON THE LEFT!!!  Geeezzz!

#2 – Decrease in ability to multi-task when performing less desirable activities:  I don’t know how many times I go up and down the stairs and it’s not because I want the exercise.  I seem to have the attention span of a gnat and memory capacity of a pea.  Why I can’t remember to put in the laundry AND bring up R’s cheerios is beyond me.  I now have a strategy to lessen the frustration.  I just keep repeating “cheerios…cheerios…cheerios” the entire time.  Unfortunately if the mantra is interrupted…lucky me gets to add another set of stairs to the tally for the day.

#3 – Extreme difficulty processing verbal information:  When my girlfriends and I used to get together back in our 20’s and 30’s, we usually had at least 3 or 4 conversations going on at the same time.  Not all that unusual for a group of women.  We would sometimes cut each other off; we would talk over one another and occasionally even complete each others’ sentences to keep the conversation moving at warp speed.  This is all due to a condition I think most women suffer from, coined by my niece Rebecca, known as “FOMO” aka Fear of Missing Out.  In the last 2 or 3 years, this is no longer possible.  Think gnat and pea.  We have reverted back to preschool days and take turns talking using our good listening ears.  No one interrupts and if you have something to say you basically stop listening to the conversation so as not to forget your comment which will be totally unrelated by the time you get to share it with everyone.  If more than one conversation occurs, this will lead to anxiety and confusion down the road. 

#4 - Sleep Deprivation:  Sleeping patterns have now become a topic of conversation amongst my “maturing” friends.  I have never been a particularly good sleeper so was shocked to hear that some people actually sleep through an entire night without waking up!  For them, waking up just once is considered sleep deprivation.  Give me a break (I’m rolling my eyes here)…moving on.  Waking up 2-3 times a night is not that unusual for me.  However now it’s because my core temperature has risen to over 110 degrees; my eyeballs are floating because I had that sip of water just after dinner or I’m now freezing to death because the sweat from previously waking up has now formed ice crystals all over my body!  I guess I should consider myself lucky as some of my friends have reported having to change the sheets in the middle of the night and it’s not because of leaky Depends.  I’ll leave it at that.       

I guess the one consolation about all of this is at my age…I really don’t care any more.  ;P  D

Thursday, 24 November 2011

Just Another Label

Our book club selection this past month “The Goode Life: Memoirs of Disability Rights Activist Barb Goode” was written by local author Barb Goode.  We were very fortunate to have Barb attend our meeting and share her experiences as a self advocate who has spoken all over the world.  Her life is an inspiration and as a parent of a child with special needs, I would definitely recommend her book.  It was an eye opener into what was and what is possible. 

One of the things Barb wrote about was the use of “labels”.  Something I’ve never been particularly fond of either but unfortunately required in Riley World.  R has lots of labels…so many that I often say he doesn’t have to go to university; he already has a number of “designations”. 

Riley has what I refer to as OCD (Obscure Communication Dialect).  Often times, no means yes and vice versa.  He will make what appears to be a positive comment/observation:  eg. “You’re here with me” and actually mean go away, he doesn’t want you with him.  Then there are the times when he will make a seemingly random remark (as usual taken from a movie) at the most inopportune time (not unlike the McDonald’s episode).  OK, ok……I’ll elaborate.       

One day after school R & I were standing in the checkout line at the grocery store.  He was getting a bit agitated as he was anxious to get home.  I was trying to talk him through it (my first mistake).  Keep it short and simple right?  Since I didn’t…he decided that this was the perfect time to “use his words” and tell me exactly how he was feeling.  Now I know he meant to say he was feeling impatient and wanted to go home but it came out as “Shut up you stupid lady!  That’s a stupid idea!” 

Now I’m sure I’m not the only parent out there with a child with autism, or any other disability for that matter, who wouldn’t just love to get inside their child’s head to see what and how they think.  Since that’s not possible, I have to come to my own conclusions and there are times when I can be waaaay out in left field.  The fact that I’ve lived with R all his life and can still get it wrong…it’s not surprising that he can be misunderstood by others.  As for the more known form of OCD (Obsessive-Compulsive Disorder)…yea, we’re pretty sure R has that too. 

Think about it...D

Monday, 21 November 2011

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

Saturday, 19 November 2011

"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

Friday, 11 November 2011

Our Fairy Godmother

Wikipedia’s (“disambiguation” whatever that is!?!?) definition of a Fairy Godmother is a fairy who acts as a mentor or guardian for a young person.”   

Our Fairy Godmother (“FG”) came to us disguised as R’s first SEA (Special Education Assistant).  We met her when R started kindergarten and she stayed with us for an unheard of 7 years.  This was due in part to some health issues that had come up. 

I don’t know if she was meant to be Riley’s FG or mine.  For whatever reason, she became and still is an extended member of our family.  I often refer to her as Riley’s second mother.  I’m sure she often felt like she was beating her head against a wall (especially in those early years).  “He’s extremely bright you know.  Do you really think he needs to go on community outings?” or “What do you mean by make it meaningful?”   Oish.   

Without her extreme patience, gentle persistence and most of all sense of humour…Riley would not be the person he is today. 

Thank you Fairy Godmother!

Monday, 7 November 2011


What happened to that cute little boy with the chubby cheeks, button nose and skin as smooth as a baby’s bottom?  HE TURNED 16, that’s what! 

It started slowly and suddenly overnight…BAM!  Zits…and not just the kind that you can cover up with Clearasil.  Noooooooooo.  They’re the ones that appear like you have a growth on the side of your face that when you touch, a sharp shooting pain goes through your entire body like 1000V of electricity and the roots grow right out through your toes.  You know the ones I mean.  “They” tell you to leave them alone and not to “pop” them.  Oh sure…let’s just have R go to school with a third head which of course he would since it doesn’t bother him. 

What most of us did in private as a teen becomes a family affair at our house.  No, I don’t mean THAT, I’m talking about the zits.  Geeez.  R is extremely intuitive, almost like he has a sixth sense.  You could tell by his body language he knew something was up.  I’m pretty sure it had nothing to do with the hazmat suit that I was wearing but you never know?!?!? 

We’re in the bathroom and “the” scene from Kindergarten Cop (see posting Age Appropriate Movies) is being re-enacted over and over and loud enough that I’m pretty sure I’ve lost most of the hearing in my left ear.  G is being totally ineffective trying to console R.  *sigh*  Still…I persevere.  Ready…set…squeeeeeeeeze!  Ahhh at last…the right side of his face is beginning to reappear.  Good enough.  I think we’ll leave the blackheads for another day.  Grooaaaan….

Isn’t growing up fun?!?!?

Think about it…D

Friday, 4 November 2011

Brotherly Love

There is a creek near our house that is a popular walking spot for families (its wide gravel path can even accommodate those all terrain strollers), people looking for exercise, and pet owners.  Most pets are off-leash which typically isn’t a problem unless of course you have very small children, you have kids who are nervous around dogs or you have owners who let their dogs run amok.  Our boys fall into the second category.        

J2 was in grade 5 or 6 and going for a walk or doing anything, for that matter, with your family wasn’t exactly on his top 10 list of things to do.  It was a beautiful day and rather than have to listen to his mother (excellent decision on his part) he decided to go along with G and R. 

When they got home J2 storms into the house grumbling “I’m NEVER going for a walk with them again!  Talk about embarrassing!!”  I apprehensively asked, “What happened?”  J2:  “It’s dad.  He swore at someone.”  Oish.  Apparently a dog came bounding around a corner and jumped up on R.  The following conversation ensued:

G:         You know, you should really have your dog on a leash.
Lady:    Well I really don’t have to.  It’s an off-leash trail he doesn’t have to be on a leash.

G:         Well that’s not really true.  He has to be under control and he just jumped up on my son who         
            is afraid of dogs and has autism.    
Lady:    Well maybe you should go walk someplace else then.  To which G responded:

G:         Well maybe you should just kiss my A**!

I know I shouldn’t have jumped to conclusions when J2 first stormed in the house.  But I did.  I guess the look of relief was pretty obvious to J2 as he asked me “Why?  What did you think happened?”  When I told him I thought maybe something happened with R, he gave me a look like why would I ever think that?!?!? 

Now I’m pretty sure I’m not alone when I say as a parent, we all pretty much know there will be a time when anything and everything we do will cause our kids to be embarrassed.  I wasn’t quite so sure if the same applied to siblings…specifically siblings with special needs.  I realized then, much to my relief, the thought of being embarrassed by R had never crossed J2’s mind even at that age.    

Thank goodness for brothers like J1 and J2!   

Tuesday, 1 November 2011

Autism as a Second Language

I’ve often heard English is one of the hardest languages to learn.  Having received my first “D” in Grade 9 French…I’m not so sure?!?! 

One of Riley’s biggest challenges is in the area of language/communication which in turn challenges MY language/communication skills.  Oish.    

We were at a playground and I’m thinking R was probably around 4 when we had a conversation that went (as best as I can remember) something like this: 

*Warning: The following conversation contains language which is inconsistent with any therapy.  Use only as an example of what not to say/do. *

Me:       “What are you doing up there?”
R:         “What am I doing up there?”
Me (thinking to myself):  Hmmm…let’s forget about the What and try doing up and down.

Me:       “You’re up there.  I’m down here.”
R:         “I’m up there.  You’re down here.”
Me:       OK…so he seems to have up and down and you and I...just having a little trouble with here and there.

Me:       “Riley can say ‘I’m up here. You’re down there.”
R:         “I’m up here.  You’re down there.”
Me:       Good job Riley!  (YES!  Now let’s switch places and try it again.) 

Me:       “Look Riley.  I’m up here.  Where are you?”
R: (Beaming and looking very proud of himself)    “I’m down there!” 

Thank goodness for SLPs (Speech Language Pathologists)!!!

Think about it...D

Sunday, 30 October 2011

Happy Halloween!!!

Riley's first Halloween with J2

The enthusiasm on their faces says it all doesn't it! 

Thursday, 27 October 2011

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!

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

Sunday, 23 October 2011

What Do YOU See???

Do you see a donkey or seal or both???
Now I’m sure at one time or another we’ve all experienced the looks from strangers that have made us feel so inadequate as a parent that we felt like crawling under the proverbial rock.  I remember being at a shopping mall with my mom when the boys were probably only about 2 and 3 at the time. 

In one particular store they had a train that went around a track just below the ceiling.  Perfect!  Both boys LOVED trains.  We watched and watched and watched.  Not quite the “experienced” parent that I am today (tee hee)…without any warning I announce in my most sing-song motherly voice “Time to go” as I proceed to walk out of the store.  I can hear you gasp in horror about now. 

One of the boys wandered out of the store, the other immediately threw himself on the floor at the entrance to the store flailing around like a fish out of water while exercising his vocal chords in hopes that anybody within a 1 mile radius would come and rescue him.  My mother calmly took my other son to wait at a nearby bench.  At this point I am wishing I was a wrestler in a previous life.  After somehow managing to scoop up this octopus of a child without either of us getting seriously injured, I work my way over to my mother.  I felt and looked like I had just gotten out of a steam bath.  Sitting behind my mother was a grandmotherly looking woman.  I know I shouldn’t stereotype just because she had grey hair and a cane…but I did.  Just as I got there, she turned around and said “What he needs is a good smack!”  Are you gasping again???  Now I do not like conflict, have never been good at thinking on my feet and will do just about anything to avoid a confrontation.  This time was no different.  *Sigh*  Thinking back I could’ve and should’ve explained my son’s behaviour with the hope of bringing her some awareness of autism.  Unfortunately at that specific time, we did not know Riley had autism and it was J2 who was sprawled all over the floor.  Oish. 

Things aren't always what they seem.  

Think about it…D

Thursday, 20 October 2011

Age "Appropriate" Movies

If it were up to Riley, he’d probably still be watching Caillou, Thomas the Tank and Winnie the Pooh.  Actually…he discovered YouTube a number of years ago so he continues to watch episodes since we can’t monitor his every waking moment.  *Sigh*  I somehow justify all the Disney movies (101 Dalmatians, Snow White and the Seven Dwarfs, Little Mermaid…you get my drift) as “Classics” therefore watchable and appropriate at any age. 

Around the time that R was in grade 6 or 7, “I” decided it was time for him to start watching more “age-appropriate” movies.  After all he surely must be getting tired of watching The Land Before Time and their bazillion sequels?!?  OK…I exaggerate slightly.  There are only 13 of them as of today on Wikipedia.   

The question…what comes next???  The next step…”real” people movies.  This, of course, needs to involve toilet humour and all sorts of hopefully improbable situations such as leaving your child behind at Christmas and not noticing until you arrive at your destination airport or something like that.  One of R’s favourites of this genre was Kindergarten Cop.  Watching it through R’s eyes is truly an eye-opener.  Even though you can probably count the number of swear words on one hand and most kids (parents for that matter) hardly notice…yup…you got it…R seemed to zone in on one of those select few words.  It starts with a B; ends with a D; has 5 letters in between and is defined on the on-line dictionary as “a person born of unmarried parents; an illegitimate child”.  The scene goes something like this…the woman is extremely upset and frantic and yells “B*****d” at Arnold.  Now on the upside…R uses it only when he is extremely upset and frantic which is a positive in that he is relating to the feelings of the woman.  On the not-so-upside…when you’re in McDonald’s and they run out of “small brown bags” for his french fries, it’s a Saturday afternoon and there’s a whole bunch of families with small children deciding on what Happy Meal toy they want…not so good. 

Think about it…D

Tuesday, 18 October 2011

To Blog or Not to Blog

Why when entering into my 5th decade would I suddenly decide to start blogging you might be asking yourself…or not?!?!?  After all, I don’t do “The” Facebook, Tweet, just found out about BBMing (although I do text) and only recently got myself a phone with a qwerty keyboard.  The phone was only because I was getting tired of pressing the number 7 key four times in order to get an “s” (which I’m pretty sure is one of the most popular letters) when texting. 

I am the only female in a family of 5.  A husband (who we’ll refer to as “G”) who has been retired for sooo long it’s a miracle we’re both still alive, a stepson “J1” (32 years old) who has an aspiring music career, a son “J2” (18-1/2 years old) who has aspirations of following in his older brother’s footsteps and another son “R” aka Riley (17 years old) who this blog is about and by the way has autism.  I’ve been married for over 20 years (only feels like 50 as “G” likes to say) and am a breast cancer survivor of 5 years (had to throw that in for the sympathy read).

I am still leery about divulging tooooo much information on-line (as evident by the reference to my family as initials rather than their names)…not really sure why…must have something to do with entering into my 5th decade.  Not that I’m dwelling on that fact. 
A lot of people…OK…some people…OK…mostly friends…well…a few “good” friends…OK…maybe just my family…ummmm…perhaps it was just my sister *sigh* have encouraged me to write about our “adventures” (as I like to call them) with Riley.  I am now ready and somehow feel obliged to share all my wisdom, knowledge, insights and theories (also known as “DOT’s”) with anybody who is willing to read/listen. 

The “Life of Riley” is anything but boring.  From the early days of his diagnosis, through preschool, elementary and now high school we have had the good fortune of meeting and getting to know people who have guided us through mountains of paperwork, seemingly endless numbers of assessments, choosing therapies and more importantly teaching us ways to give Riley the best opportunities for success that worked for us as a family

Now that I’ve gotten the background information all taken care of…stay tuned and I hope you enjoy reading about “Our Adventures with Riley”