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