Choices...aren't always optional

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

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



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


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

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

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

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

Think about it…D

NEW TV Series "Touch"

Two nights ago I watched the much anticipated premiere of the TV series “Touch”.  The official trailer can be seen here on YouTube with the following description: “The series centers on a father who discovers his autistic, mute son can actually predict events before they happen.” 

There had been a lot of speculation within the autism community about “Touch”.  Would it be an accurate depiction of autism or would it be another attempt to glorify autism as a disorder with superhuman traits.  With that in the back of my mind, I couldn’t help but watch it through the eyes of a parent of an autistic child.      

So what did I think?  Well…as I watched I found myself very focussed on how they portrayed the boy in the show, how realistic were the scenarios and was it plausible.  It reminded me a lot of the TV series Numb3rs.  This series revolved around 2 brothers and their efforts to fight crime in LA.  One is an FBI agent, the other a mathematical genius – he might even be considered a savant by definition.  His use of mathematics was always a crucial part in solving the crime.  Only in this series, the genius brother is simply that…a genius brother.  No autism, no repetitive behaviours, no sensory issues, no “limited” diet AND he could sleep at will. 

Similar premise yet the focus shifts from the use of mathematics as a science to solve crimes to the use of mathematics as numbers for an autistic boy to communicate.  In "Touch" the attention is on the mathematical abilities of the autistic character as opposed to focussing on more common traits of autism. 

I came across a must read article "Touch" TV Series Uses Numbers to Connect People” by Emilie Lorditch, Inside Science News Service.  In it a Mathematician explains how series can make use of actual patterns that exist in nature.”

As I wrote in a previous post “More than 2 sides to a Story About Autism”, I don’t believe any one movie/TV series/character can accurately portray autism.  I am thankful attempts are being made to bring about awareness of autism and will remain open-minded.  Had I watched “Touch” purely from an entertainment standpoint I would give it a B+ (and not an A) only because I don’t want to set my expectations too high for future episodes.  ;P  I like “sci-fi”, I like the premise of the show and OK, I like Kiefer Sutherland.

These are only my thoughts...D

PS  Happy Birthday Sis!!!

#youmightbeanautismparentif...

Although I consider myself a "Twitter Newbie" because I am still trying to figure out just exactly what's going on, I fear I’ve developed a bit of an addiction and may soon require some type of intervention. There is a wealth of information out in Twitterland. Some very informative, some amusing, some LOL funny and some…well let’s just say don’t fall into any category.

Twitter is limited to 140 characters so has developed its own “language”. There are all sorts of shortcuts and MORE acronyms to learn. Hash tags (#) are used to categorize topics or at least that is my understanding. There is one that I found of particular interest #youmightbeanautismparentif… This was started by a couple of moms as a birthday game just over 2 months ago and is still going strong. One that I particularly liked and related to was “You might be an autism parent if you share funny things your child says but are in no way trying to make fun of them or offend others on the spectrum.”   I personally include “things your child does” as well.

Last night I was looking through some of our holiday pictures that were posted by the relatives and came across a couple that I just had to share. Almost daily at our resort there would be water aerobics. Loud thumping upbeat music would blare across the lagoon in the hopes of getting people out of their lounge chairs and into the water (with or without drinks in hand). I, of course, chose to watch from above, cooler cup in hand and stand guard over our borrowed beach towels.

I absolutely LOVE these two pictures!!  They capture R's uninhibited enthusiasm and individuality to a T!  Cue music.  Can you guess which one is my Riley???    =D

Have yourself a fantastic day!!!  D

A Degree in Parenting

Like a lot of new parents, I was eager to learn how to be the “perfect” parent.  There were tons of books on parenting…an entire section dedicated to parenting in Chapters.  Even better…talks by parenting experts the likes of Barbara Coloroso and Meg Hickling at venues nearby.  You could just feel the enthusiasm sitting in a room full of keeners hanging on every word.  Whether I later put into practice what I’d heard, I always came out of there gung ho and ready to go after that so far elusive “Mother of the Year” award. 

Then came R’s diagnosis and again I found myself in rooms filled with eager parents, only this time I was apprehensive and a LOT nervous.  ABA, RDI, PECS, SLP...what the heck did all these acronyms stand for?!?!?  Then there was Cognitive/Behavioral therapy, Sensory Integration therapy and something called Augmentative Communication.  O…M…G!!!! 

Obviously the committee for Mother of the Year was going to make this difficult for me.  Not to be deterred, I was prepared to go just about any where in search of understanding.  Even if that meant going on a road trip with my FG (Fairy Godmother) and/or other parents, staying in a hotel getting an uninterrupted sleep and being able to have a leisurely meal in an “adult” restaurant…yes I was willing to go to those extremes.  ;P   

Then just when I finally thought I might be able to register for higher level Parenting courses…something would change in Riley World.  New studies would be published, alternative therapies/interventions would be introduced, and the use of medications discussed…all ever-changing decisions depending on your child/family.  More recently the proposed changes to the DSM (Diagnostic and Statistical Manual), which defines the criteria for a diagnosis of autism, is on the minds of many families as the New Definition of Autism Will Exclude Many, Study Suggests.

For us the learning will be a continual process, we may never complete our degree and that’s OK.  What parent wouldn’t do all they can for their kids (special needs or not)?

Be forewarned MOTY committee…I’m onto you!  D

Travelling (with or w/o Autism) Tips

I seem to have gotten a little side-tracked and dropped the ball on sharing my Travel Tips and holiday vacation adventures since being hit by this most annoying flu/cold the past couple of weeks.  Since coming home to wet, cold, rain and snow I am going to refrain from reminiscing about the sun, sand and beach for the moment to avoid breaking down in tears. 

I did want to “pass along” (aka vent about) something I learnt if you have booked a package through a vacation operator/travel agent and you are planning on doing web check-in yourself within 24 hours of your flight in the hopes of saving you some of the grief that I experienced. 


Tip #2:

As soon as you receive your e-ticket confirmation from your vacation operator/travel agent make sure you have the appropriate information that is required by the airline (eg. Airline booking code) for on-line check-in.  The booking file number on your e-ticket is not the code required by the airline and is used by the vacation operator only.

I usually book most of our travel on my own and rarely book through a vacation operator/travel agent.  I find trying to find the best deal a personal challenge.  ;P  However when you’re trying to book a vacation for 8 families, 25 people in 4 different cities…a travel agent and packaged vacation seemed to be the way to go.  Not being familiar with how these package vacations worked, I should have done my homework and/or asked more questions rather than assuming I would be able to go about my merry way as usual. 

Vacation operators purchase a block of seats on airlines.  If you choose to do the 24 hour web check-in on the airline’s website (like I did) as opposed to advanced seat selection through the vacation operator, you must have the airline’s booking code which is not given to you by the vacation operator unless you request it by e-mail.  They then allow themselves 24-48 hours to get back to you which, if you didn’t know this and are trying to web check-in within 24 hours of your flight and it’s during the Christmas holidays, can be a “bit” of a problem.  The airline is not “able/supposed” to give you their booking code.  They are instructed to direct you back to your vacation operator.

Normally this wouldn’t be a major problem unless of course you are travelling with small children and need to be seated together or you are travelling with R and need to be seated together.  What should have taken me about 10 minutes to check-in took over 2 hours, what seemed like dozens of phone calls (many were recordings that their offices were closed for the holidays), much pacing and cussing by G and a lot of frustration on my part.

In hindsight I should’ve sucked it up and paid the extra for advanced seat selection at least for R and my seats although I’m pretty sure that after 5 minutes in the air, any stranger sitting beside R would’ve gladly switched seats with me.  HA! 

On to more current events...D

A Lesson in Patience

I received this from a good friend in an e-mail this morning.  It seemed like a natural follow-up to my previous post More than 2 Sides to a Story about Autism and one of my first posts What Do YOU See?  Don’t be offended and before getting your knickers in a knot, please make sure to read to the end of the story as well as my “observations” that follow.  Thanks!

A lesson in patience …

A woman in a supermarket is following a grandfather and his badly behaved 3 year-old grandson.  It's obvious to her that he has his hands full with the child screaming for sweets in the sweet aisle, biscuits in the biscuit aisle; and for fruit, cereal and pop in the other aisles.

Meanwhile, Granddad is working his way around, saying in a controlled voice, "Easy, William, we won't be long, easy, boy." 

Another outburst, and she hears the granddad calmly say, "It's okay, William, just a couple more minutes and we'll be out of here. Hang in there, son."

At the checkout, the little terror is throwing items out of the cart, and Granddad says again in a controlled voice, "William, William, relax buddy, don't get upset. We'll be home in five minutes; stay cool, William."

Very impressed, the woman goes outside where the grandfather is loading his groceries and the boy into the car.  She said to the elderly gentleman, "It's none of my business, but you were amazing in there. I don't know how you did it. That whole time, you kept your composure, and no matter how loud and disruptive he got, you just calmly kept saying things would be okay. William is very lucky to have you as his grandpa."

"Thanks," said the grandfather, "but I'm William. This little shit's name is Kevin."

Let me just say that I am obviously feeling much better as this made me LOL!  Being a parent of a special needs child whose “behaviours” are often times misread, I have to admit when I first started to read this I cringed at the description (“badly behaved”) of the little boy.  Perhaps I’m hypersensitive and dissect everything waaaaay more than I should as my immediate reaction was that perhaps the little boy had not been properly prepared before going into the supermarket or he had to wear his blue pants because he favourite black pants were in the wash or McD's changed from white bags to brown bags or he thought they were on their way home after the last stop or……oops, this isn’t about me is it?!?  Tee hee. 

As I kept reading I thought to myself wow, what an amazing granddad.  He gets it!  BAZINGA!!!  Gotta tell ya…NEVER saw that one coming!

Enjoy the not-so-obvious!  D

More than 2 Sides to a Story About Autism

There has been a lot in the media about the upcoming TV series “Touch” and the soon-to-be released movie “Extremely Loud and Incredibly Close”, both having characters with ASD but not about autism.  This will inevitably lead to a discussion somewhere about what is/isn’t an accurate portrayal of autism. 

At some point in the discussion the movie “Rain Man” will undoubtedly be brought up.  I went to see the movie when it came out back in 1988 and remember liking it.  I found it both intriguing and fascinating.  I’m sure some of you may be shaking your head about now wondering how I could possibly have liked such a movie.  Sure Rain Man may not represent an accurate picture of autism by today’s standards but hey…it’s fiction (“not fact”), was made well before any of my own personal experiences, and is over 23 years old!  I sometimes wonder what sceptics would deem to be an “accurate” portrayal of autism in a movie today??? 

Autism is such a wide spectrum with so many variables how could any one movie/TV series/character accurately depict autism?  Do we not want people to be more aware of autism and its uniqueness?  As it is sometimes said, “if you know one person with autism; you know one person with autism.”

In the last 5+ years or so “celebrities” have been coming forward with their own personal stories in order to bring attention to the challenges faced by so many families.  I’d like to think all this media attention (positive and/or negative) is helping to bring an awareness of autism to the forefront. 

So where am I going with this apparent “rant”?  *sigh*  No where.  I just found myself getting a little worked up today thinking how could I agree with one thing and in the next second agree with what appears to be the total opposite?!?  Can I be that easily persuaded?  Am I that gullible?  Don’t answer that.  I think I will go with “open-minded” and that there are a lot more sides to a story than two. 

Think about it…D

Empathy and a New 30 Day Challenge

I hardly ever get sick.  Sure I get the occasional cold but rarely am I bed-ridden with fever, chills and body aches.  I’m convinced I got hit with this latest flu because I failed so miserably at my 30 Day Challenge to go sans alcohol.  :(    

As a parent of a special needs child, I’d like to think I have become a more “empathetic” and understanding person.  Do we not hope that people will be understanding and empathetic towards our children (and us) when "we" are having a meltdown in the grocery store, shopping mall, restaurant or wherever???  Does the saying “Walk a mile in my shoes” not often come to mind in these situations?

Over the past couple of days while in a state of flu-induced delirium, it struck me that perhaps I’m not as empathetic towards others as perhaps I should be, specifically when it comes to being sick.  I’m not talking life-threatening illness here just your everyday cold/flu sickness.  I have been through a “life-altering” illness, what I refer to as my “full meal deal” - mastectomy, chemotherapy and radiation for breast cancer  five years ago so I do not take illness lightly.

I can think of some simple everyday examples where unless you have “walked that mile”, unknowingly and certainly not maliciously, we may not be as understanding and empathetic as we could be.  For example:

J2, Uncle Stoo & I all have “seasonal” allergies.  For me the “season” has now started in about March and goes straight through to November.  Oh joy!  Stuffy nose, itchy eyes, sinus headache…the entire gamut.  Now……G and my sister DO NOT suffer from any type of seasonal allergies what-so-ever and therefore consider our sniffling and snorting to be somewhat annoying.  Well EXCUSE US all to heck! 

Then there’s the non-drowsy vs. regular over-the-counter medicines.  Back in my 20’s, I thought non-drowsy medications were for wimps.  How’s THAT for being empathetic?  Oish.  NOW if I take anything other than non-drowsy……put me to bed, turn off the lights and see you in the morning. 

Having children is another biggie.  Remember being single and going to friends’ houses who had kids and there’d be toys ALL OVER THE PLACE!  I’d think to myself, gee surely they could have at least gathered all those toys into a pile in the corner.  Come on now…I’m not the only one who thought that, am I right??  It wasn’t until I had kids on the go that I realized trying to clean up on a regular basis was a useless and never-ending battle.  Eventually I too learnt the art of kicking toys out of my path on the way to the kitchen with laundry basket in one arm and some frozen substance that would be dinner in the other.  I mean seriously, why clean up more than once a day (if that) and “TRUE” friends wouldn’t judge.  ;P

Now these examples in the big scheme of things are pretty insignificant and rather petty.  Yet I wonder…do these emotions (empathy and understanding) develop/mature with age and experience for all things in our lives or do we only focus these emotions on issues that are at the center of our lives at any given time?  Wow…that sounded almost “deep”. 

So I’ve decided I am going to conduct my own research with another 30 Day Challenge.  I will try to be more aware of my surroundings and for every time I feel irritated or annoyed (G will argue that would be 100% of the time), I will turn the tables and look at the situation from the other perspective.  Wish me luck!

Any one else want to take on a 30 Day Challenge?  

Think about it…D

Travelling (with or w/o Autism) Tips

Tip #1:

An electric Hot Pot/Multi-Pot is a MUST if you have a "particular” eater. 

Rival Hot Pot Express (2 Prong Plug)

Toastess Multi-Pot (3 Prong Plug)

These little beauties have been an absolute saviour for us.  So much so that I feel they are a part of our family and should be given names. ;P  They cook incredibly fast, are durable, easy to clean and travel well.  We take them with us wherever we go when in doubt about cooking facilities.  Yes they BOTH made the trek to Mexico! 

A bowl/dish, a few eating/cooking utensils, a little dish soap (optional), in our case the required small sieve for the green flecks and you’re good to go.  If your “particular” eater is attached to a “particular” bowl/plate/eating utensil…don’t forget to take them along.  Trust me when I say you will only forget "required/particular" items once, anything else can hopefully be bought. 

Travelling is not an option for many families for any number of reasons.  For us, with R’s very limited diet, food has always been an issue.  Since discovering these little gems, we’ve been able to take along and cook food for him which has made travelling a little less stressful.  I highly recommend one of these if you have a "particular" eater. 

Happy Travels!   D

An All-Inclusive Adventure

Talk about an Adventure with Riley!  What an amazing trip!!!  Hard to believe after 10 months of planning, 11 hours on planes, 3 hours on buses, swimming with the dolphins, jumping off a cliff, visiting some Mayan Ruins, umpteen Miami Vice and World Cup slushies, laughing until my cheeks hurt and 7 loads of laundry later…it’s all over.  *heavy sigh*

When you’re travelling with such a large group (25 of us), an all-inclusive is definitely THE way to go!  Once you’re there, what type of tropical concoction you are going to try next is about the toughest decision you have to make. 

Being of legal drinking age in Mexico, J2 did his best to make sure he got the most for “our” money.  ;P  He even went so far as to secure a spot in the lounge for pre-dinner cocktails all by himself and a half hour early!  I know…how considerate is THAT!?!?  Oish.

G made sure to have 3 "complete" meals a day and put his newly acquired Christmas cooler cup to good use.  His only complaint was his straw didn’t have the swizzle mixer on the end.  

J1 surprised everyone by showing up unannounced.  Being the seasoned traveller that he is, he took it upon himself to verify that Imodium really does work the first time.  What a trooper. 

R discovered that Lay’s S&V chips in the turquoisy-blue bag do in fact taste the same as the ones at home.  YES!!  Unfortunately he did not acquire a taste for Mexican or any other new food for that matter……so much for opening up a whole new world of dining experiences.  *sigh*  He did manage to go through 36 of the 48 packages of Mr. Noodles, a Costco size box of cheerios and 3 bags of rice cakes that we transported.  Luckily G was able to get some raw eggs to put in his soup and they had hot dogs at the resort.  We figured it worked out to about $50 per wiener and $20 an egg.  Maybe an all-inclusive isn’t the best way to go for Riley.  HA!

I did MY best to supplement R’s costs.  Although I’m not a breakfast person so only filled my face twice a day, I forced myself to make that second trip to the buffet.  The sacrifices a mother must make.  Tee hee.  The heat really took its toll on me too so I had no choice but to try and stay hydrated.  Thankfully my cooler cup came with the swizzle mixer straw. 

Can’t wait for the next Tucker Takeover!  D

PS  Watch for my “Travelling (with or w/o Autism) Tips” over the next couple of days.

Back from Paradise

Well we made it back safe and sound.  It was SO great to see and visit with all the family!!!  What a way to celebrate the start of 2012! 

My mind is buzzing (and by that I mean scattered) with a million things I want to share.  Lucky for you I will refrain from writing an epic posting and instead treat you to many, MANY (tee hee) short posts over this coming week. 

Stay tuned…D

Happy 19th Birthday J2!!!

Feliz Ano Nuevo!

Best wishes from our family to yours for a Happy & Healthy 2012!

D, G, J1, J2 & Riley