Thursday, 28 January 2016

The Perils of Perseveration

Perseveration is Riley World’s middle name. So “What’s the deal with perseveration?” Well…click on the red words (if you’re reading from my blog) or the blue words (if you’re reading in an email) for a great reader-friendly explanation from my friend Bec.  I’ll wait. *whistling*

Yesterday Riley came downstairs quite distressed about his underwear. His white and grey underwear to be exact. Apparently the night before while getting dressed after his shower, he noticed a teeny-weeny hole just under the waistband. “It’s broken!”  But…he put them on anyways. Shocking. I. Know.

This is what happened to that teeny-weeny hole by morning…

Yup…less than half the underwear was attached to the elastic waistband. He had put what was left of this pair in his laundry basket.

Now typically when R ummmm “rips” his clothes it is due to stress/anxiety. Only took me about 3 years and 87 shirts to figure THIS one out.  If you follow us on Facebook, this will not come as a surprise. Photo proof…

What he looked like when we picked him up one day.
Yes...he was wearing the shirt at the time. 

No...he was not wearing these shirts at the time.

Other times it is because he can’t leave something (a loose thread, a teeny-weeny hole or any one of 1,067 reasons) alone. It bothers him to a point of no return. In this case…the teeny-weeny hole in his underwear. OR…just maybe…he wanted thong underwear instead of his usual boxer briefs. Yea…I’m not buying that either.   

Needless to say R was stressed out about getting some new white underwear. Today. He would have preferred right then and there but we agreed that I would try and find some while he was at his program.

So now the detective work began. Where did I originally buy those particular white and grey underwear??  Because…of course…being a seasoned autism mom…I had cut out ALL identifying labels. I really need to stop being so efficient. ;)  Lucky for me…no-name or generic brands usually mean either Wal-Mart or Superstore.

I managed to find some similar white underwear at Superstore. Not exactly the same but all that they had. As soon as I got home Riley came running down and looked in the bags. I held my breath and showed him the underwear. He eyed them up. I continued to hold my breath. He looked at me. I started to get dizzy. He looked back at the underwear and that’s when I blurted out “These underwear look different but they are just bigger than your other ones and we need to wash them and then they’ll be the same.”  R looked at me and said “Where’s the grey ones?” I don't remember what happened after that.  

Wednesday, 20 January 2016

How We Handle "Undesirable" Activities in Riley World

When it comes to Riley World…it is all about “incentives”. Motivators so to speak.  Some may refer to these as “bribes” but that…to me…sounds so negative. ;)  So let’s just go with incentives shall we??

Whenever an undesirable activity is in the foreseeable future, my mind immediately starts to play out all possible scenarios in which things could go sideways and then…how to try to minimize the fallout.    

One of the activities of Riley’s new program is grocery shopping and then cooking lunch.

I received an email about what was planned for the following day:

And for cooking we are making hot dogs and french fries, so everyone can either pack a lunch and take what they made home, or eat it for lunch! 

This was good. This could work. Hot dogs are one of the few foods R will eat. Sort of. Okay. Wieners. He will eat wieners. Close enough. I responded with: dogs and fries! I think I will only send a drink with R and prep him for eating hot dogs for lunch.  He will probably not eat any of the fries but...go for it!!  :D  Peer pressure can sometimes work.  Probably not but you never know.  :)  Also...R usually only eats the wieners (boiled) BUT we have, in the past, worked on eating an actual hot dog (with bun...plain only...bun and wiener) so also feel free to just put one on his plate. 

You could always give him a choice:  One hotdog with bun or 2 wieners.  Totally up to you though. 

May the force be with you.  Good luck!

After prepping Riley…I sent this email in the morning:

The incentive is in place.  :)   He's prepped to eat 2 hot dogs (with bun) and to try at least one French fry. Maybe two.  We can only hope.  I mentioned the bun but I will leave that up to you.  He will probably say 2 hot dogs (the incentive) but if you think he's really struggling with the bun...after he finishes one w/ can suggest he just eat the 2nd wiener.  He will be most pleased with that suggestion.  :D  Be prepared for piles of ripped bun on his plate.  Hahaha!  I told him G would check to see if he did "a good job" in order to go get his incentive on the way home.    

So what is R’s “incentive”???  5 cases of pop. Yup. You read that right. 5 cases (12 cans/case) of pop. Orange Crush, Fanta Orange, C-Plus, Sprite and 7-Up. The number of cases will vary based on how undesirable the activity may be.

I know what you’re thinking. Why bother with all this…“Won’t he just eat when he’s hu…”  STOP! Just…stop right there!! No. No he will not. It doesn’t work that way in Riley World. We started working on trying to expand his diet (aka Operation IFO) a couple of years ago. Although we did manage to add a few more things to his menu…it is still pretty limited. *sigh*

As soon as he got home he immediately unloaded ALL 5 cases (this is not our kitchen fridge). The line-up on the top shelf???  I think he is imitating pop "displays" at the eateries in food courts. Or not. Your guess is as good as mine here. He has one shelf and the rest...

well...they are relegated to wherever he can find space beside the fridge.  

As you can is his flavour of choice.  Praying we won't need an incentive in the near future. 

Monday, 18 January 2016

Even the Ducks Stayed Home...

Today Riley and I headed up for another day of snowshoeing. Not to worry…you are not going to have to endure a weekly update. Well…I hope not. But since I’m trying to get back into the groove of blogging you’re going to have to work with me here.

Last Sunday was one of the best days you could ask for. The sun was out, it was warm and if you’ll remember…I even put my snowshoes on the right feet.  Go me!

Today…ummmm…not so much. It was socked in and rainy and snowy and well…a day that I should have sent G. 

When we arrived it was raining. Not drizzling or spitting but full on raining. As soon as we got off the bus…

R:  It’s too wet to go snowshoeing.
Me:  *starts walking to the rental office*
R:  I’m scared of the rain.
Me:  *keeps walking ahead of R*
R:  *follows close behind muttering away*

We got to the rental office and I immediately started to read anything and everything in sight so as to avoid all eye contact with R. I could feel his eyes on me waiting to pounce but I maintained my ground and continued reading with glazed eyes the instructions on how to fill out the rental form.

We got our snowshoes and headed over to get snowshoed up. R was hanging in there. Barely.

It started to snow. With the rain. Oh joy. 

R:  It’s TOO SNOWY to go warm-up!
Me:  It’s snowing alright.
R:  I should go home!!
Me:  Sorry buddy…the bus is gone.
Me:  Yup.

This right here is the reason we ride the bus. We have no choice but to stay. R knows this and more importantly “I” know this which helps keep my whining to a minimum.  *sobs softly*

As they started their warm-up, I watched as Riley repeatedly tried to "wipe" the rain off his jacket. When R was little, the rain didn’t bother him at all. As he has got older it became an issue. He went through a phase where even a few drops of rain on his clothes meant having to change. “I’M ALL WET!” He would screech if a few drop of rain got on his shoes. “MY SHOES ARE ALL WET!!”  He did not want to walk through wet grass. “THE GRASS IS TOO WET!!!” The list goes on and on. I knew this could go sideways at any moment. So I did the obvious and stood as far away as possible at a distance.

My hopes of avoiding the rain among the trees were crushed within 10 steps. There would be no reprieve. By the time we got back down the mountain (1 hr 20 min later) I’m pretty sure there wasn’t a speck of dry clothing on anyone.

Picture proof that looks can be deceiving…R was definitely NOT happy! 

The "best" part of the day…riding home on a school bus with 40 soaking wet adults while trying to rip/tear/gnaw off the trail ticket from R's jacket before he went into full-blown meltdown mode. Just in case you needed to know why I drink.  :D

Tuesday, 12 January 2016

The "Circle of Riley World"

In June 2013, Riley finished high school. For the 5+ years prior to that we were cowering in the corner in the fetal position looking ahead to the next phase in Riley World. Adulthood.

In some ways it feels like we had come full circle. We were back to the beginning. Paperwork to be filled out. New procedures to be learned. Schedules to be planned.

I guess on the upside for us…no diapers and fewer meltdowns sooo…I guess there’s that.

But the nagging questions were still there.  “What is Riley going to do now that he’s finished school?”  “Will he get a job?”  “Have you thought about where he will live?”  Hyperventilating commencing in 3…2…1…

Then there’s the “There’s NOTHING out there!”  “There are NO PROGRAMS!!”  “THERE ARE NO SERVICES!!!”  *Passes out*

So what do you…as a parent of a young adult who can not ride the bus on his own or even stay home alone for that matter, do? How do you create a meaningful life where your adult-child is involved in their community and feels accepted?

You do what you have done for the past 16 years (if you count 2 years of preschool and the “extra” year of high school). You take a gap year and regroup. And then…you put on your grandma panties, take a deep breath and look for something that will work for your “kid”.

It’s not easy…but as parents…we will find a way. Am I right???  Please tell me I'm right otherwise I'm going to crack.  

Next post:  What are the options??

Sunday, 10 January 2016

Snowshoeing Season Started Today...

Today was the first day of the 2016 Special Olympics Snowshoe season and Riley and I were there. Well…in body. Having to leave the house at 7:30am on a Sunday morning…yea…that. And of course we had to rouse Riley at 7:15!  He who every. other. single. morning. gets up at 5AM sharp!!!

I am happy to say that I remembered there is indeed a left and right snowshoe and put them on accordingly. Sorry. Forgot to take photo proof. While not quite as bad as wearing shoes on the wrong feet…the straps do get in the way and seasoned snowshoers can spot a newbie within a 10 mile radius. I noticed at least a half-dozen people wearing them on the wrong feet.  ;)

What I did not learn from last time was what not to wear when going snowshoeing. A puffy coat and a super-duper neck wrap are not conducive to slogging up blue and black diamond trails when one is prone to hot flashes. Note to self…wear light layers next week.

What I did remember from last time…Riley can go like stink, never get winded and is therefore put in the long-legged “guys” group who like to go to the blue and black diamond trails. *sob sob*

And last but not least by any means…Riley did not utter “I’ll be whining” once. Shocking I know! Third season lucky??? Yup…I’m going with that. 

Thursday, 7 January 2016

Let's Try This Again...

Photo Credit Morguefile

Last year, I blogged a total of 18 times. My last post was for Riley’s 21st Birthday. As a frame of reference, my first year I blogged 137 times. 

I noticed a lot of the bloggers who started around the same time as me seemed to hit a “lull” last year. Some have written they hope to start writing more, some appeared to have stopped altogether and some are using other forms of social media.

I had high hopes when 2015 started. There were some new and exciting things happening in Riley World. One was the start of a new community program for young adults that we (a group of 7 families) were starting up. I couldn’t wait to share everything involved in getting this going.  And then…the planning, organizing and start of the new program in September and well…Youza…talk about overwhelming!   

One thing I have learned over the past 4 years is it is much easier to write about things as they happen. This year I am going to try and do that instead of putting things off.

Just don’t hold me to this.  Deal?