Why I will ALWAYS be...a Rookie Autism Parent

“You are the expert about your child.”

Have you ever been told this?  I know I have. And after 15+ years there were times when I may have actually started to believe this. But today?? 

I call BULLSHIT!!!  

After 15+ years in Riley World I am in awe at how I can still do things wrong. So…SO wrong!!!  

Call it a weak moment.

Perhaps the amount of food and drink I have consumed this past week have overtaken any brain cells I had left.

I…I…don’t know.

I only know that I cracked.

No...no...

More like...shattered. Under the pressure. Beyond repair. And now…

Now I will have to live with the consequences of my lapse in judgement. The side glances (because I am ignoring all eye contact with Riley), the incessant scripting, the constant questioning until the STUPID (Don’t say that word!) Beauty and the Beast Special Edition DVD arrives from Amazon that I ordered waaaaaaay before Christmas but never arrived and they are now going to ship another one on Monday and I "accidentally"  told Riley that the mailman was bringing it and it should hopefully arrive by Friday because now that Christmas is over in Riley World he started making his birthday list on December 26th and I...just...couldn’t...take him talking about his birthday wish list since his birthday is still 5-1/2 months away every single time I saw him.  Every.  Single.  Time. *sobbing* 

The DVD in question.

After 15+ years in Riley World you want to know who the expert is??   Riley.  :D

Christmas 2014 is a Wrap!!!

So has everybody recovered from the copious amounts of food and drink consumed this past week or so? Moi??  Ummm…that would be no……a definite no. My lounge pants are no longer comfortable and even my skin hurts. This is not good. Not good at all.

This cartoon (shared on FB by my friend Danielle) pretty much sums it up only the date of the second picture is wrong! It should read 26 December. 

Image Credit

This year Christmas in Riley World was filled with a number of “firsts”!  

1. After the first couple of days Riley opened all the following days of his Advent calendar on his own. 
   


2. Bringing up all the decorations.
   


3. Actively taking part in decorating the tree.
   


4. Getting his picture taken with a Mall Santa.
   

Come Christmas morning Riley waited patiently in his room until 9am!! No small feat considering he usually gets up before 5am. Santa delivered with 5 DVDs and a Birdo stuffie (a Nintendo Mario character). Most of the other items on his list were covered by family with the exception of one DVD, which was ordered but did not arrive in time.

By the time G and I got up on Friday the 26^th, Riley had undecorated the tree all by himself. 

Obviously presents are done therefore Christmas must be finished.

Any evidence of Christmas was removed from his visual schedule as well. 

Now remember the one DVD that was on his list, that was ordered but did not arrive in time??  Guess what he put on his Birthday list which was started on…you got it…December 26^th. 

His birthday is in June.  :(

Happy Holidays from Riley World!!

All he wants for Christmas are the same DVDs!

For YEARS Riley was so NOT interested in Christmas, birthdays, the Easter bunny or any other special occasion. Sure we bought and wrapped gifts, hid eggs, and dressed him up in costumes that he would ummmm…tolerate. So WHY on earth did put ourselves through all that agony?!? I have absolutely no idea.

And then…about the time when kids stop believing in Santa or wanting to go hunting for eggs or wanting to go trick or treating…it happened.

It was Christmas Eve. Riley was around 10-11. We heard a sound coming from the other room. It sounded like…paper…being torn. We were most confused. There in the middle of the room was Riley ripping the paper off a present…for someone else.  :O

This year Christmas has been on Riley's mind for quite some time. First came the list. Then more lists with more items (all DVDs). I tried to explain to Riley that he already had most of the DVDs on his list so he may not get everything on his list. 

A few days later I noticed Riley “tidying” his room (although R’s definition of tidying and mine are not exactly the same). Then I found 'some' DVD's in my bathroom garbage. 65 to be exact! 

The next day I found 25 more and he probably still has ~50+ left. What the heck was going on?!?!

Now I am 99% sure there was absolutely nothing wrong with the DVDs...in MY eyes. There was, however, something not right with them in R's eyes.

You may be asking yourselves:

1)      Why does he have SO many DVDs?

2)      Are they all different?? 

3)      Where are the covers?

And of course the million dollar question…

4)      Why do you keep buying him the same DVDs over and over again?

Well to answer your questions:

1)      When Riley was little he asked for virtually nothing. So when he actually started asking for specific DVDs we were thrilled! Luckily for us most of the DVDs could be found in the $5 bin and so we made every effort to give him what he asked for (within reason).

2)      Of course not. There are multiple copies of the same DVD. Haaallooo!?!

3)      The covers have a shelf life of about 3 days. The plastic cover is ripped off within a day or two and the paper jacket stays intact for about 1 day before being torn apart and discarded in the nearest garbage. And no...I have absolutely no idea why he does this.

4)       Could you turn down this face???

3 more sleeps to go....

Our 1st EVER Mall Santa Photo!!!

To be fair…J2 never wanted his picture taken with a mall Santa either. Sure we had one taken his first Christmas (he was almost 1) when he didn’t know any better.

Doesn't he look thrilled.

After that…NO WAY JOSE!  He would stand a good distance away and yell his ‘wish list’  (which consisted of Duplo and apple pears) to Santa. Oh how I wish his list was the same now.  *sigh*

So it was with great relief that we never had to think about taking Riley to sit on Santa’s knee. But…and there is always a but…back in the days when there was a company kids Christmas party complete with Santa and presents? Yah.  That.  J2 would bravely go up and sit on Santa’s knee. After all…there was a present involved. Riley?? Ummmmm…not so much.  

Age 3

Age 4 - The closest we got was the edge of the stage.
You may notice my teeth are clenched and I had the vise grip on R. ;)

Two years ago Riley surprised us. At his Special Olympics Christmas bowling night Santa made a surprise visit. G and I were naturally freaking out as R had never, EVER wanted to go near Santa. When they called his name we were prepared for him to refuse to go up. And then it happened. Riley bounded up out of his seat and onto Santa’s knee with THE biggest smile on his face. 

Never say never.

Today Riley and his cousin Sara went Christmas shopping together. I hinted to Sara that R may be willing to get his picture taken with Santa. Look what they brought home. LOOOOK!!!!!

My eyes...MY EYES!!!
I think I have something in MY EYES!!!

She said Santa was most impressed with Riley's Christmas list. Why yes. Of course he recited a number of his DVDs. Not his entire list but enough to impress Santa.  

Our SECOND Christmas Miracle!!  :D

The Never-Ending List...

It started back in October. 

The Christmas list. 

5 items.

Riley tried to add a 6^th but I vetoed that pretty darn fast. No. Just NO!
There will be NO Teletubbies in this house EVER again.

Slowly the list began to grow…

and grow…

and grow some more until.....

Nice try Riley!     

Learning to Offer Choices

*Disclaimer: Strategies/techniques used in Riley World are ones that work for Riley and his family and are not necessarily viable for other individuals/families.

Long, long ago in a far away world lived a little boy named Riley. He was a sweet, happy-go-lucky boy…*cue scratching sound of vinyl record*…wait…ummm…that was as long as things went his way.

One of the biggest challenges for Riley and his family was communication. Acquiring language was difficult for R. This led to a great deal of frustration and in turn challenging behaviours (self-hitting, verbal outbursts and tic-like muscle movements).

Along came Riley’s Fairy Godmother and Mr. Brown (a Behavioural Consultant) who worked with the family to help them understand the ways of Riley World. One of the first strategies/techniques they recommended was to give R choices. They said it would empower Riley to have some control over decision-making thereby diffusing possible triggers for meltdowns. The parental units were somewhat sceptical until they witnessed the positive results.

Sure there were growing pains. Offering choices that would be acceptable to all did not come easy at first…especially for the mother unit. In her mind it was impractical to wear sandals/shorts in the winter. Pick one’s battles indeed however in order to maintain peace and order in Riley World the entire population would need to be in agreement.

Thus began the evolution of the choices “game”.

·         Initially both choices would be things that Riley liked/wanted.

Eg. Do you want to wear blue shorts or black shorts?

·         Next came one preferred choice; the other…well…not.

Eg. Do you want to wear blue shorts or blue pants?

Gradually the mother unit caught on and with experience began to offer choices that would not only broaden Riley’s acceptance of change but would also ultimately result in an outcome that satisfied her. Hey. It was a technique that worked well (for both R and J2) in those early years. Eventually “Choices: The Second Edition” was introduced.

·         Both choices probably not desirable to Riley yet moving towards change.

Eg. Do you want to wear blue pants or black pants?

Of course there was balking and verbal outbursts. Miracles only happen on 34^th Street my friends yet the meltdowns were reduced significantly enough that persevere they did.   

Years passed. Meltdowns waned. The mother unit was hooked on this concept.  

Fast forward to 2014.

The choices game is still in play but gone are the days when the mother unit was able to outsmart Riley. This became very apparent at the start of Operation IFO. Riley has developed negotiating skills and shown signs of a typical teenage sloth (ie. you do it for me even if it means having to choke down a hamburger).

Looks like I am going to have to up my game.  :P

A Christmas Miracle???

It started on November 12^th. As soon as Remembrance Day was “finished”…the next ‘day of Observance’ in Riley World was THE topic of conversation.  Daily.  Hourly.  Oh heck…every time I saw him.  :O

It goes something like this…“Christmas is coming. In December it is Christmas. What’s in December? Christmas. I need to wait patiently to open my presents. What do I need to wait?  Patiently.”   Ad nauseam.   Over and over and over again.  *sobbing*

This is because all things in Riley World revolve around statutory holidays/specials days/special events. It has been this way since……forever.

On December 1^st the outside lights HAD to be up. Come rain, shine, sleet, hail or snow…the lights MUST be up and ready to be turned on. I stalled as long as I could bought myself some time and promised Riley that the tree/decorations would go up this weekend after I had time to ummmm tidy up the living room. Who am I kidding…our house will never be tidy.  :(

So after G & R left for R’s Special Olympics swimming class this morning…because I am *written in sarcasm font* an awesome autism mom and would like nothing better to do with my TIME ALONE than to clean, vacuum and dust…I downed my coffee and dragged dusted off  got out the vacuum cleaner. Don’t get me wrong…I LOVE Christmas! Only…NOT first thing on a Saturday morning. Just sayin’…

And then…Riley came home. The clouds parted and the angels started to sing. He happily ran up and down the stairs bringing up (one at a time of course) tubs and boxes of decorations. The entire time pleased as punch with himself.

Now Riley had been talking incessantly excitedly about wanting to decorate the tree with dad for weeks on end. Yet he has never…EVER wanted to touch the tree so I seriously had my doubts. Last year we had moved a step closer with Riley “directing” G where to hang the decorations.

And then…the skies were bright blue and the angels WERE SCREAMING!!

LOOOOOOOOOOK. AT. HIMMMM!!!!!!!!!!!!

HE'S TOUCHING THE TREE AND EVERYTHING!  YES...I KNOW I'M TYPING IN CAPS BUT THIS DESERVES ALL CAPS!!!

20 years old and Riley WANTED to decorate the tree!!

Our Christmas Miracle...indeed!  <3

Back to Blogging....

I had been struggling. What to blog. So I just didn’t.

My last 2 posts were memes. That was almost 8 months ago.

I was at a cross roads. After Riley finished high school over a year ago, I decided “we” needed to take a gap year. Am I regretting that? Absolutely not! I think both Riley and I needed this past year to regroup, re-energize and get ready to take on the next phase.

Adulthood.

Sounds scary doesn’t it.

When Riley was in school there was a plan. A direction of sorts. Even though there was some uncertainty…there was a plan. A schedule if you will. From September through June, Riley would be in school. Developing, learning, and socializing.

For 14 years (Riley repeated Kindergarten) we had a plan. Even though I could only look ahead a year at a time…there was a plan. For 14 years.

And then… 

We had no plan. 

***

I found the above half-written post in my drafts folder along with a link to this OMG-THIS-IS-US!!! article “Loosening the Ties that Bind: Growing Up with Autism” by Liane Kupferberg Carter.

Her last paragraph sums it up perfectly “But we must. And we will figure out what comes next. We will do this just as we have done everything else these past twenty years. Pulling together as a family.”

Thanks Liane! I think I am ready again to hit the ground running  jogging slowly  okay…perhaps just walking.

I think I am ready to take on this adulthood thing with some renewed energy.

I am ready.  

I Feel a Series Coming On...... #WordlessWednesday

I Made My 1st Meme...#WordlessWednesday

Introducing...Operation IBW!!!

There was obviously something in the air this past month as I noticed that I was in good company during my blogging ummm hiatus. And that’s…o-kay.

So what better way to kick off my return with some video footage? Yes we are still working on OperationIFO  but heading into spring brings...are you ready...the introduction of Operation IBW (aka I’ll Be Whining). The possibilities with this one are endless I tell ya.  ;)

Now I am sure you have heard the old saying “one man’s trash is another man’s treasure”?  Well my friend Lori had one of those branch clippers on a stick that she bought on a whim and used only a couple of times. She gave it to G when she was moving. During the last snow G was in heaven. The branches on the trees around our yard were weighed down with snow so he was able to clip away to his heart’s content without the use of a ladder.  

It was a sunny day today so G decided to go out and clean up the tree carnage. “I” decided R should help him. Not sure who was least impressed…G or R?!?  So at 10:45 I shoved R out the door  R headed outside.

G started R off with a corn broom then switched him over to a push broom. Did you know a corn broom does not push well?? Conversely a push broom does not sweep well. Just an observation.

Betcha didn’t know that the operation of a push broom required a demonstration. Welcome to Riley World!  :D

Now even though I was still in my PJ’s, I decided audio was required so you could enjoy the full experience. My pleasure. Two more observations before this last clip:

• Did you know the words raking and sweeping are interchangeable???
• When sweeping does not work…kicking will do.

Riley held the bag helped G bag the branches and was outside for 1 hour!!!

Bet you can't wait for the next installment of Operation IBW right???  ;)

Another 11th Hour #TToT post...

If you grew up watching Charlie Brown Specials this adapted quote may ring a bell… 

Maybe next week I’ll get my list done before the eleventh hour!  

Image from Google

1.      Random holidays. For just the second year, Monday marked “Family Day” where I live. It was a (provincial not national) statutory holiday. Two-thirds of the country observes a February stat holiday, which coincides with Presidents Day in the US, except for the province where I live. It was the week before. Dare to be different indeed.

2.      My doctor retired almost a year ago. The Health Centre we go to did not have anyone to take over for my GP so we needed to find a new one. I had not found one yet. Granted I think I would have needed to look for one. In the meantime R and I would go to the doctor on call there to renew our meds since our files were all there. This time we saw a lovely young woman. We talked, I nervously laughed and she listened. I liked her. I had a good feeling about her. And then she said those magic words “I can take you on if you’d like.” I am pretty sure she felt sorry for us. I’m okay with that.

3.      Since I am all about spreading awareness…I am going with the trend to rename February 14^th “Single’s Awareness Day”.  Who needs to pay triple for chocolates/flowers anyways?  G was most thankful.

4.      Every Friday after we finish working at “Lori’s library”, Riley and I go for lunch. Whenever we go someplace new I go into training mode.

First Riley orders “Plain udon with no seasoning please.” 

Then I translate: “A bowl of plain udon. NO green onions. NO garnish. Nothing. Just noodles and broth please. Nothing else.”  

We are used to getting the puppy dog head tilt and confused look, followed by some question clarifying we do indeed just want noodles and broth. We go with it. It is easier that way.

And yet…every so often we get a bowl of noodles with something else in it. *sigh* I would bet the chef who does this does not have children and the thought of food being served without some type of garnish is blasphemy.

The gentleman who takes our order on Fridays has passed basic training with flying colours. I hope he stays forever.  

5.      We had to pick up a few things at the store on the way home. After I finished paying R said loudly and clear as a bell (to me) “Thanks for using my debit card!”  There was printer ink for R among the items so let’s just leave it at that.

6.      One of my favourite bloggers in the whole wide world started doing a Friday Link-Fest. I was thrilled to have my post “Being the Best That You Can Be” included. Thank you Bec at Snagglebox!!! Be sure to watch the video at the beginning.

7.      Who doesn’t like getting a compliment right?? I started a Step class with my dragon boat team about a month ago. One would think one would only be required to “Step” up and down. Not so. Dance-type steps and a certain amount of coordination are required. Why didn’t anybody tell me!

Yesterday the instructor came over and told me “You did a really good job today.” At 53…it still makes me feel giddy all over. And here I thought nobody noticed when I was tripping over “the step” the first couple of weeks.

8.      My first exposure to social media was Twitter. I started tweeting and blogging at the same time. I was not and I repeat NOT going to get sucked into Facebook. And then I did. And then life as I knew it was over.

One of my first Twitter friends was Robbie who blogs over at Fractured Family Tales. She and her friend Jen of Dancing in the Rain wanted to “get some of the friendly exchanges back into our social media lives. To just chat with people. Gab. Jabber. Prattle. Engage in friendly discourse.” and so decided to start a Hashtag movement to #KeepSMSocial. I thought it was a great idea! I decided to join in. I need to brush up on my tweeting skills.    

9.      R’s sleeping habits have been all over the map lately. Waking and getting dressed as early as 3am. WTH!! I am SO thankful that the days of having to stay up with him have passed. I have no idea what he does. I am sleeping.  :P

10.      Self-explanatory.

   

Have a great week!!!

Your Hosts:

A Fly on our (Chicken Coop) Wall, Considerings, Finding Ninee, Getting Literal, 

I Want Backsies, Mother of Imperfection, Rewritten, Thankful Me, The Meaning of Me, The Wakefield Doctrine

Being the Best that You Can Be

Are you watching the Olympics?  I am.

Are you amazed what the athletes can do??  Me too!

Are you in awe of the dedication it must take to become an Olympian???  You better believe I am!

Do you gasp out loud when an athlete wipes out going nearly 100mph?  OMG…YES!!

Do you want to cry when an athlete falls and yet gets up to continue their program?  *sniff* Yup.

Do you get goose bumps when the National Anthem of the Gold Medalist is played?  Absolutely. *shivers*

Watching all these athletes compete at the Olympic Games ("…considered the world's foremost sports competition…") is nothing short of, in my opinion, someone trying to be the best that they can be. 

There are articles out there with Tips for Being the Best You Can Be or How to Be the Best Person You Can Be. But what exactly is being the best that you can be and is it the same for every person??

Does being the best that you can be mean being the best athlete in a particular sport or being the best doctor/lawyer in a certain profession?   

OR

Does being the best that you can be mean doing the best you can to the best of your ability?

I will leave you to ponder these two statements and in the meantime share my thoughts about both.

In the first case (best athlete or profession) I think it would require a person to work hard, be dedicated and hopefully have a passion for what they are doing. Yet what if, for reasons beyond their control/means, they were unable to pursue any of these options. Does this mean they are not being the best they can be???

In my teens I will admit being the best athlete would have been pretty awesome. The best athlete was usually popular and uber-cool. I was neither of these. Shocking I know. Haahaa!

In my twenties…I dreamt of having a successful career. Not all that unusual. Luckily back in the olden days a degree wasn’t as necessary as it is today and a person could have a decent career working for one company (usually until they retired). It worked alright for me.

Then came my thirties (and beyond). Becoming a parent changed my idea of what it meant to be the best that you can be. What I wanted for both boys was for them to be kind, confident and happy. Mostly happy.

And then I became a special needs parent. Being the best that you can be took on a whole new meaning.

For 15 years now I have watched Riley grow and develop into a kind, confident and happy young man.

I have been amazed at his ability to draw people into his world with very few words. His warm smile and gentle personality goes a long way.   

I am in awe of his perseverance (not to be confused with perseveration although I am in awe of that too), his determination and his resilience to cope and overcome some of the more challenging aspects of his autism.

I have gasped. Boy have I gasped. The first time he screamed “DON’T HIT ME!!!” out in public. The first time he shouted out “BASTARD!!!” in a crowded McDonald’s. People around me gasped!   

I have cried happy tears, sad tears and downright ugly tears over the years. As Riley has gotten older the ugly and sad tears have been replaced with…well…not so much happy tears…but happiness just the same. And laughs. Lots and lots of laughs. Otherwise I would be crying. Sad and ugly crying. Laughter works better for me.

And I still can get goose bumps when Riley does something new and/or unexpected. Whether it be eating a new food, mastering a new skill or yelling out that new swear word expressing himself verbally…he IS being the best that he can be at his own pace and that makes my heart swell. 


What does "being the best that you can be" mean to you? 

GO TEAM CANADA!!!

G's 15 Seconds of Fame...#Ten Things of Thankful

While I may not always give G credit, he does do some things around here that I hate would rather not do. Over the last week or so I have found myself thanking him on more than a couple of occasions so I decided to give him his 15 seconds of fame.

Have no fear my friends, I am not dying. At least…I…I…don’t…think I am?!?  G???  Is there anything you want to tell me??

So here are some reasons (in point form since I’m late) G is worth keeping around…

1.      He cleans dirty shoes. Whether it be poop or just plain mud…G is your man.

2.      He does minor car maintenance. This week it was windshield washer fluid. G went to buy more washer fluid and refilled the tank. I used to do stuff like this myself. I don’t want to any more.

3.      He plays chauffeur. For the kids; for me and for my drunk intoxicated tipsy friends.

4.      He does the recycling. I rinse most things but leave the sorting to him.

5.      He irons. I prefer the ummm tousled look.

6.      I am a bug-a-phobe!!  He kills bugs. Enough said.

7.      He checked my hiking boots (that I haven’t worn in umpteen years) for bug carcasses before I had to wear them to go snowshoeing with R last weekend. Refer to number 6.

8.      He repairs furniture…eventually. Two months ago one leg of an old footstool broke off. I use that footstool. I have been balancing on 3 legs for two months now. He fixed my footstool this week.

9.      He sorta figured out how to put in R’s Greepers. He left the cutting to me…that way I can’t yell at him that he did it wrong! He’s learning.  :)

 Riley's bowling shoes.

Greepers: A different way to "tie" shoes.

And that’s all I've got. Looks like G only gets 13.5 seconds of fame.

So I will leave you with this video snippet. The smallest things in life can bring the biggest smiles. Riley reminds me every day. 

We gave Puppy a bath (aka threw him in the washer) this weekend.

Have yourselves an AWESOME week!!!

Your Hosts:

A Fly on our (Chicken Coop) Wall, Considerings, Finding Ninee, Getting Literal, 

I Want Backsies, Mother of Imperfection, Rewritten, Thankful Me, The Meaning of Me, The Wakefield Doctrine