Coming to Grips with the "Number"...

70 is the number.  An IQ of under 70 is the score that historically has been used to define “mental retardation” or what we now refer to as “mentally handicapped” and is the number (plus or minus 3-5 points) currently used to determine eligibility for certain adult services where we live. There has been much controversy around the issue of determining services based solely on this number. I admit I am not up on all the issues as I tend to operate on a need-to-know basis when I get freaked out. It is a strategy that works for me.

When Riley was first diagnosed with autism back in 1999 just before his 5^th birthday, I went through the whole gamut of emotions. Reading all the assessment reports was overwhelming. Back then we did not have a number although the words “mildly mentally handicapped” were mentioned a LOT along with “significantly below average performance” and “a severe delay in the development of comprehension skills”. Fourteen years later seeing those words is not any easier. Back then I chose to focus on the positive comments like “teachable little boy” or “displayed a developing sense of humour” and in his most recent assessment “delightful young man who is eager and works hard”.

It is a number which although describes Riley’s cognitive/academic abilities does not describe what he can do or who he is. Some individuals with extremely high IQ’s may be unable to function on a daily basis due to a variety of limitations in other areas of major life activities. Conversely some individuals with lower IQ’s, with proper supports, are able to function and live independently. So what does the number mean for us?

In the DSM-IV (page 43; paragraph 318.0) Moderate Intellectual Disabilities is described, in part, as follows:

"Most of the individuals with this level of Mental Retardation acquire communication skills during early childhood years. They profit from vocational training and, with moderate supervision, can attend to their personal care. They can also benefit from training in social and occupational skills but are unlikely to progress beyond the second-grade level in academic subjects. They may learn to travel independently in familiar places. During adolescence, their difficulties in recognizing social conventions may interfere in peer relationships. In their adult years, the majority are able to perform unskilled or semi-skilled work under supervision in sheltered workshops or in the general workforce. They adapt well to life in the community, usually in supervised settings."

Yup...I would say that is a fairly accurate description in R's case. In Riley’s latest assessment report (September 2012) it was written:  “He has well developed rote skills and is able to read words and spell within the low end of the average range.” and “…so much potential and sparks (good rote skills).” Low end of the average range. That statement?  Music to my ears. There is so much more to these assessments than just a “score”. There are so many other factors that I do not have the knowledge or expertise to explain so I won’t even try. 

So where does that leave us? For some individuals like Riley the number is not a concrete number. His wide range of abilities make it difficult to assign a single number as his IQ. Overall his number is somewhere between 45-53. While this number was a little disheartening to hear, I needed to keep reminding myself that it was indeed only a number. The number does not define who Riley is or where he will be in the future. So we will keep plugging away as we enter this next stage of Riley World. 

In the meantime I will file away Riley’s latest report with all the others and only bring it out when I need to. For now the waters are calm and we are getting ready to celebrate Riley's graduation from high school in June. Pretty sure I will be in the fetal position cowering under the bed by the end of July. 

Things I Thought I Would Do/Be... #Monday Listicles

Our challenge this week from Wendy who blogs at Twisted Domestic Goddess was to come up with “10 Things We Thought as a Child We Would Do/Be”.

Wow...so long ago. I racked my brain all week trying to remember what I wanted to be when I grew up. These 5 came to mind and then I was stuck. I mean really stuck. I even considered bailing this week. Then I decided an incomplete was better than a fail. This thinking could be explained by number 1...

1.      Teacher

I always wanted to be a teacher. Then I had kids of my own. Then my kids went to preschool. Then my kids were in elementary school. Then I did not want to be a teacher any more. 

2.      Shoe Salesperson

If you remember any of these three pictures I would bet you wanted to be a shoe salesperson when you grew up too. Am I right? Now-a-days when you go into a shoe store you better know your shoe size or in the case of shoe shopping for your kids…good luck locating one of those mats with the foot outlines which I am sure are most accurate; then when you finally flag a salesperson down they will bring you the boxes and heaven forbid they help you lace any sneakers/runners that you are trying on. Whoa…sorry about that. Got a little carried away.

3.      Stewardess (or as they are known today...Flight Attendants)

By Dorin Chirtoacă from Chişinău, Republica Moldova
 [CC-BY-2.0], via Wikimedia Commons

Travelling around the world for free???  AND you got to wear a uniform with a hat! Sounded like a pretty good deal to me. Now I know better.

4.      Marry Donny Osmond

"Puppy Love"…Donny was singing that song TO. ME!!!

5.      A Mom…

One out of 5 ain’t bad.  

When you were a kid, what did you want to be/do when you grew up? Be sure to pop on over to Stasha's to see what everybody else thought.

Happy Birthday Sis!!!

I could say how wonderful my sister is; how I have always looked up to her; how she is my best friend (well maybe not for the first 20 or so years); or how she is soooo funny fun to be around…but that is SO not me and she might think I was dying or something so instead I am just going to say…

Happy 50-something Daisy Duck!

StttttRIKE!!!!!

Did you know that 5 Strikes in a Row is called a 5-Bagger?

Do you know anyone who has gotten 5 Strikes in a Row??

You do now!  Riley got 5 Strikes IN. A. ROW tonight at bowling.

He scored a whopping 243!

Woooo-hoooo!!!!!

Getting all "Suited Up" for Graduation!

Image from MorgueFile

High school graduation is just around the corner. For some of Riley’s upcoming grad festivities “proper” dress wear, while not required, would be a good idea since I am pretty sure most kids will not be wearing running pants and t-shirts. You never know though…I could be wrong. So in preparation G had Riley try on J2’s grad suit jacket. Bonus...R looks up to J2 and actually prefers to wear J2’s hand-me-downs as opposed to new clothes. Yah…how many teenagers can you say THAT about?

The following night R came down to eat his 2^nd dinner wearing J2's suit jacket. He had gone into the closet in the guest room, got the jacket out of the suit bag and zipped it back up. He is a sneaky monkey neat and tidy like that.

Now remember…Riley does not appreciate negative feedback. Even if you are calm, anything you say to him that is negative sounding upsets him. When we insisted he not wear the jacket when eating his dinner he got quite agitated.  “SHUT UP YOU STUPID!  I AM GOING TO WEAR MY JACKET ON!”  And something we had not heard before…“I’M GOING TO KILL YOU.” You gasped didn't you? I am pretty sure I heard something. I know both G and I were taken aback.

Riley is not an aggressive person. If anything he is overly very sensitive to anger/violence. If you look back at those three statements, one is grammatically correct; one is fairly close and one well…is not. For the most part any out-of-the-ordinary phrases that come out of R’s mouth perfectly are usually lines from a movie that he has watched.

So…here was our dilemma. Do we let him wear the jacket because really…it is just a jacket that can be cleaned if he were to get it dirty; do we “give in" to R’s outburst/need to assert himself OR do we stand our ground that what we were asking was a reasonable request for an 18 year old? Not as simple as one might think. Let me explain. When Riley was younger there wasn’t always an option. He needed immediate reinforcement/ consequence to a request/behaviour otherwise he could not make the connection. Now that he is older the immediate response is not as crucial. We have some leeway.

Instead G went to get one of his old suit jackets. R was not having any part of that. Fine. His choice. He finished eating his dinner sans jacket grumbling the entire time. When he was finished he grabbed J2’s jacket from the chair and started to head upstairs. We stopped him. He was NOT happy. “I’M GOING TO KILL YOU.” Cue hitting the wall and screaming “I’M AT A 5!” (This is in reference to the Incredible 5 Point Scale by Kari Dunn Buron). Well at least he was using his words. Oish. Next came the tears. In an effort to diffuse the situation G took R upstairs to show him all his suit jackets and to offer him a choice. R begrudgingly decided on the first jacket...the one G had brought downstairs in the first place. 

About 10 minutes later I went upstairs to check on him. He was not wearing the jacket but had it on the floor around him. He looked up at me and said “I was very angry. I was at a 5.” He was on the verge of tears. I sat down beside him and he broke down. He was pleading with me. “Please. I want to wear J2’s jacket. Pleeeease let me wear it on.”  It broke my heart. The word sure was on the tip of my tongue. He said please. He was remorseful. He so desperately just wanted to wear the jacket. Besides…who was it going to hurt right? J2 had not worn the jacket since his graduation. Yet I just could not bring myself to say yes. Riley is now old enough and has some control over his behaviours. As hard as it can be on the both of us, sometimes he needs a reminder that his behaviours have consequences no matter how trivial they may seem and with R’s cognitive challenges talking it through is not a productive alternative.

When I went to say goodnight later that evening R was still emotional. Tears and pleading to wear J2’s jacket was almost more than I could take. One last Hail Mary and I was ready to accept defeat. I said he could wear J2’s jacket in June for his graduation and we needed to keep it clean until June. R seemed to accept that. That was when the halogen lightbulb blinded me. He now had a timeframe he could work with. 

It has been almost 15 years and I am still learning how one four letter work can make all the difference in Riley World. Oi-vay.

Here is R the following day wearing G's old suit jacket. You can't see but he is wearing shorts with no socks/shoes.  :)

We have since discovered that his need to wear the suit jacket was because James on the DVD cover of "James and the Giant Peach" also wears a suit jacket. Why didn't I think of THAT!?!  

Liebster..."The Sequel"

Mondays usually mean it is time for Stasha’s Monday Listicles. This week the topic was “10 Things in Your Closet”. Well since I have already revealed in a previous Listicles “Clutter Sweet Clutter” what a pack rat I can be I am not sure anything in my closest would come as a surprise/shock to you so instead there is going to be "Something Different" today.

A fellow autism mommy blogger friend over at “Autism & Oughtisms” has passed along the Liebster Award to little ol’ me. It is a VERY famous award and is full of information that takes an entire weekend to make up…I…I…I mean…research and document. My faithful readers may remember I was nominated once before for the Liebster…thank you. If you are so inclined you can reread my riveting post here. I am once again going to tweak the rules of the Liebster by capping any lists at 10 since that is what I am used to doing on a Monday. 

First the rules. If you are interested you can find these at the bottom of this post. So sit back and make sure you have an hour or three...cuz this is gonna be a long one. 

Next up is a list of “10 Things About Me”. The last time I only came up with 6 Random Facts About Me. I admit it. Back then I was just not that interesting. Six months later I am still not that interesting but will give it the old high school try. So here are 10 Fun Facts About Me:

1.      I like martinis.

2.      I still like wine.

3.      I ummmmm basically like all types of alcohol.

4.      I now play Words with Friends on R’s iPad every night before I go to bed. I find it is more social than playing alone on my DS.

5.      I bought a Mini Cooper for my late life crisis.

6.      I love to cook for my family. Call me Martha Stewart and well OK…it gives me an excuse to drink wine.

7.      I live to eat. People who eat to live are liars.

8.      I am not a fan of muffin top and back fat. I am, however, less of a fan of diet and exercise.

9.      I am much younger than I look. I will let you think about that for another minute.

10.   I have run out of patience and have basically given up.

Next are the questions I was given to answer.

1.      Why did you start blogging?

My sister made me do it. She’s a bully.

2.      What’s your favourite piece of art?

This family portrait (over on the right) drawn by J2 when he was in Grade 1. I am thinking it is a good thing he decided to pursue music as opposed to art.

3.      What’s your favourite scent?

Fresh baked anything.

4.      Who inspires you?

I am sure most people would expect my answer to be Riley and/or J2. Would it surprise you if I said it was G???  Me too!  Baahaahaa. Just kidding G.  

5.      Name one major event that shaped who you are today.

This is a tough one. I am actually thinking serious here. I am going to go with one challenging year we had. It started on July 16, 2005 and ended just over a year later. My dad had suffered a heart attack and after a week in the hospital passed away. For the first time in my life I understood the meaning of a broken heart. I was devastated. About 3 months later, my mom was diagnosed with colon cancer. She had surgery followed by chemotherapy and remains cancer free to this day. During that time I had discovered a lump in my left breast. After a multitude of tests I learned I had breast cancer in early December. Less than 2 weeks later (on December 23rd) I had surgery (full mastectomy) followed by 6 rounds of chemotherapy and radiation. As a Mother’s Day present to my mom and me, my sister and G surprised us with an Alaskan Cruise. We set sail at the end of July 2006 and although it has not always been smooth sailing…still…this song pretty much sums it up. 

6.      What one super-power would you choose and why?

My very first Monday Listicles topic was “My 10 Superpowers”. Nothing has changed since then but if I had to narrow it down to just one, I think I would have to say number 4.

7.      What pets do you have?

Do dust bunnies count???  No…then no pets.

8.      What’s your favourite plant?

Artificial. The only time my thumb has ever been green was when I hit it with a hammer. Over the past 5 years or so I have even started investing in artificial bedding plants. I kid you not.

9.      What event in nature takes your breath away?

Changing poopy diapers.

10.  What was your favourite subject at school?

Ancient history…noooo…not the subject…I meant school is ancient history to me.

11.  What countries have you visited?

Pre-kids I used to like to think of myself as a traveller although I was never the back-packing, hostel kinda gal. Cruising or planned tours were more my cup of tea thank you very much. I cruised the Caribbean, practiced Spanish in Mexico (dos cerveza por favor), spent one Christmas in the Orient with my sister and honeymooned in Europe. Post-kids we have stuck to the North American continent.

Since I am still buying green bananas…you too can wait just a little longer before I reveal my victims nominees. Much the same as the last time, I am going to make my questions deep and insightful. Do not be afraid my dear nominees. I have faith in all of you. Here we go:

1.      Coke or Sprite?

2.      In school did you prefer Language Arts or Math/Sciences?

3.      Star Wars, Star Trek or Starbucks?

4.      Least desirable mode of transportation:  Sea, Land or Air?

5.      New Country, Classical, or Rock & Roll music?

6.      Drama, Comedy or Reality TV Shows? What show?

7.      Cable TV or Satellite?

8.      Carnivore, Vegetarian or Vegan?

9.      Old fashioned books or e-reader?

10.   What do you think is your best quality?

Last and certainly most important are my nominees. I was freaking out somewhat relieved to see that this latest version of rules suggested nominating 3-5 blogs as opposed to 11. (Check out the rules below if you don’t believe me.) Included in my list are bloggers that are new to me, new to blogging and hopefully new to you.

1.      Bipolar, Asperger’s and Margaritas – Any blog title with alcohol in it is at the top of my list. Lisa is new to the blogging and autism world. I related a lot to her story, her sense of humour and her outlook on life had me subscribing to her blog…something I suggest you do too.

2.      Anybody Want a Peanut? Life with a side of Autism – If you are not following/reading Jenni’s (we’re tight) blog then we just can’t be friends. I will leave it at that. Off you go.

3.      Teenage Whisperer – I recently came across a post “Why I’m A Daydream Believer” on this blog that reminded me of all the positives that can happen when you dare to dream. This blog is “aimed at anyone who has an interest in helping challenging young people in their day to day lives…”  I encourage you to pop over, read this post and if it does not pull at your heart strings…you are the newly appointed “Ice Woman/Man”. 

4.      Gretchen Leary – I first connected with Gretchen’s blog through Twitter. She writes poetry, short stories and blogs about her experiences with Asperger’s. Twitter and I have not been as tight lately so I have missed out on a lot of Gretchen’s latest poems. One of my favourites was Bella Ballerina – A Poem.  Listen to the music Gretchen writes to as you read the poem…it really sets the tone. One of her most recent posts (at the time of writing) was “Can I Hug You?” So helpful for me living in Riley World.

5.      Break It, Make It, or Bake It – My Monday list would not be complete without a blogger from my Monday link-up. Audrey is a regular over at Monday Listicles. We have a lot in common…she has 2 little boys; I have 2 ummm boys…well…they used to be little once upon a time. She blogs; I blog and finally she has a great sense of humour; YES…I have a sense of humour too! Go check out her blog and see for yourself.

  

Aaaaaaaaaaaaand......we are DONE!  Thanks for reading and I hope you go check out my nominees. You won't be sorry. If you still feel like some light, fun reading...head over to Stasha's to see what everybody has hiding in their closets.  Have a great week!  

Version 1.2.7.4.9.5.8.3.2a of the Liebster Award Rules:

1.      You must thank the person who gave you this award

2.      You must display the Liebster heart on your blog

3.      You should nominate 3 to 5 up-and-coming blogs (some rule variations say 11) with less than 200 subscribers

4.      Each person must post 11 things about themselves

5.      Answer the questions given to you by the blogger who nominated you

6.      Create 11 questions for those you nominate to answer

7.      Notify your nominees and provide a link back to your post

8.      And no tag backs (the point is to try and highlight new bloggers so let’s spread the support )

The Results...10 Movie Quotes #WordlessWednesday

Here are the quotes/clues for those who missed them on Monday.

1. “Don’t bother me with details. Just GIVE ME THAT HAT!”  



ANSWER:  "E"


2.  “Go away. I’m not home!!”


ANSWER:  "G"


3. “OK, grab shell, dude!”


ANSWER:  "A"



4.  “Sarah Baker, off, now! Don’t make me come up there!”



ANSWER:  "H"




5.  “Oh, my butt is itching up a storm and I can’t reach it in this monkey suit.”



ANSWER:  "I"


6.  “Excuse me, you’re biting my butt!"



ANSWER:  "J"


7. “Now, I’m warnin’ ya.”



ANSWER:  "D"


8. “I want the job done tonight!”


ANSWER:  "B" - Quote at time 8:45




9. “Ah, forget it. I think I’ll sleep in my own bed tonight!” 



ANSWER:  "F"




10. “I set certain rules and I expect those rules to be obeyed.”



ANSWER:  "C"

So....how did you make out???  For those of you who left their answers on my Monday's Listicles post, looks like Les from "Time Out for Mom" nailed it!   Woo-hooo...CONGRATULATIONS!!!  

10 Movie Quotes from Riley World...#Monday Listicles

This week’s topic “10 Movie Quotes” was suggested by Ally who blogs over at Just a Normal Mom. Since Riley is the movie fanatic in this house, I decided to add a little Riley World twist to it. 

Did you know it is not uncommon for individuals with autism to exhibit echolalia in some form? Riley has used this "method" since he was young to help him communicate his wants and needs to us. As he got older, if he was sad/angry/happy he would recite a sad/angry/happy line from one of his videos with the same inflection and intonation as the character in the movie. While this was a positive step in his communication, when you are standing in line at a crowded store..."Shut up you stupid lady" would be a little ummm awkward.

Back to this week's Monday Listicles topic at hand. See if you can match who said what for these 10 movie quotes from Riley World that we have heard over...and over...AND over again:

1.      “Don’t bother me with details. Just GIVE ME THAT HAT!” 

2.      “Go away. I’m not home!!”

3.      “OK, grab shell, dude!”

4.       “Sarah Baker, off, now! Don’t make me come up there!”

5.      “Oh, my butt is itching up a storm and I can’t reach it in this monkey suit.”

6.      “Excuse me, you’re biting my butt!” 

7.      “Now, I’m warnin’ ya.”

8.      “I want the job done tonight!”

9.      “Ah, forget it. I think I’ll sleep in my own bed tonight!”

10.   “I set certain rules and I expect those rules to be obeyed.”

a.      Crush the Turtle – Finding Nemo (2003)

b.      Cruella De Vil – 101 Dalmations (1961)

c.       King Triton – The Little Mermaid (1989)

d.      Grumpy – Snow White and the Seven Dwarfs (1937)

e.      Professor Hinkle – Frosty the Snowman (1969)

f.       Alvin – Alvin and the Chipmunks: The Squeakquel (2009)

g.      Gru – Despicable Me (2010)

h.      Tom – Cheaper By the Dozen (2003)

i.        Shrek – Shrek the Third (2007)

j.       Marty the Zebra – Madagascar (2005)

I hope you will come back on Wednesday to see how you made out with your answers. Until then, pop on over to Stasha's to see if your favourite movie quotes made anybody else's list.