Menopausal mom to 2 young adult sons (one with ASD, ADHD, tic/seizure disorders and the other with attitude).

Monday, 31 October 2016

2016...A NEW Halloween Era Begins

Back in June, I posted this conversation between G and R on Facebook:

R: My birthday is finished.
G: Yes it's finished.
R: It's too early for Christmas.
G: Yes it is. When can you start your Christmas list?
R: I don't know.
G: How about October?
R: NO. That's Halloween.
G: Are you going to dress up as a pirate again?
R: No.
G: What are you going to dress up as?
R: Princess Peach.
G: Oh. Why don't you dress up as Mario??
R: NO! Princess Peach!!
G: But Princess Peach is a girl.

This past Thursday was Riley’s Special O’s Bowling Halloween Night. R was over the moon to wear his new-found costume. I posted this pic on Facebook. That dress?? Ummmm...yea. My high school grad dress. Yes I kept it. Yes I know that was *cough* 38 *cough* years ago. Not sure which is more disturbing...the fact that I kept it all these years or the fact that Riley fits into it without any the length or chest area. Oi.

Thanks to everyone for all the positive comments!  Many were also commending me for being such a good mom and how awesome I must be to let R dress up as Princess Peach. Trust me. I’m not. A good mom that is. Awesome? Perhaps just a little.  ;)

Here’s the thing…it was also brought to my attention that R has actually been pining to be Princess Peach since he was about 14. Yea. 8 years. See. Not so awesome. However…to be fair, this was the first year he has actually insisted on being Princess Peach. For the other 7 years, he has been happy as a pirate. Really.

And if there’s ever any doubt about whether or not I made the right decision letting Riley dress up as Princess Peach…all I have to do is look at this face. 

Happy Halloween from Riley World!!!

Saturday, 29 October 2016

"Joy To the World"

Do you remember the first concert you ever went to?? 

Mine was Three Dog Night.  Yes.  I'm THAT old.  

Joy to the World indeed.

I can’t remember how old I was (early teens?!?) but I do remember getting shoved and pushed and praying I wouldn’t get separated from my friends because the chances of ever running into them again…slim to none. There were no reserved seats. It was a free for all. Pot-smoking, cigarette-smoking and who knows what else people were smoking…were right out in the open. And by the time the concert was over, there was a smoke cloud from floor to ceiling. I can even remember the ringing in my ears afterwards…pretty sure I suffered some hearing loss too. Ahhhh…the good ol’ days.  :P

Now Riley can be very sensitive to sound. VERY sensitive.

When R first started school, he could not tolerate the noise of a school assembly. 300+ students/teachers in an echoey gym??  Nope. Wasn’t going to happen. 

So our Fairy Godmother had the daunting task of easing Riley into a cacophony of excitable children laughing, talking and settling into place. She knew how severe his sensitivity was to sound and came up with strategies that would enable Riley to gradually sit alongside his class mates.

One of her strategies was headphones. But because noise-cancelling headphones were not readily available…she improvised. I like to refer to those days as the “Princess Leia” era. 

She found a pair of over-sized headphones (imagine industrial size headphones) and cut off the cord. The first time I saw Riley walk into the gym…I was ummmm…perplexed. You see…I was still at the “I want my child to ‘blend’ in as much as possible stage” and those headphones??  Well…let’s just say R definitely did NOT blend in. But…with the prequel trilogy having been released around that time…"I" persevered. 

And here we are over 15 years later. Attempting a music concert of all things, in an arena large enough to hold 18,000 people!!  WTH was I thinking?????

This. This is what I was thinking…

Yup...that's R's bigger brother J1 playing the guitar. 

G recently bought a pair of noise-cancelling headphones so we decided what better time to give them a try with Riley. 

I think R may have even managed to look up from watching Madagascar on his iTouch to catch a glimpse of J1 on the big screen. He didn’t last much longer after the intermission but I’m still calling this a HUGE win!!!  

What was your first concert???  Help me out here...let's hear from the pre-2000 crowd at the very least.  

Wednesday, 5 October 2016

The EEG "Adult" Experience

The last time R had an EEG, we were still able to go to Children’s Hospital. There is quite a difference between going to Children’s Hospital and going to a “regular” hospital. There are no TV’s, no DVD’s and mostly… no Lovely Leanna.

For the first time ever though, R was inquisitive about this appointment.

R:   Where we are going? 
Me: We are going to a different hospital.
R:   What is it called? 
Me: Vancouver Hospital.
R:   What it is on?  (no that’s not a typo) 
Me: 12th Avenue.
R:   Who’s the doctor’s name?
Me:  Ummmm…I don’t know. It will be someone different.

R never, EVER used to ask questions. ANY questions. So…WOW! And as always I handled it in my usual seasoned autism mom manner…by avoiding any further interactions. I was, after all, driving. 

As luck would have it…traffic was CRAZY!!! What would normally take 25-30 min took almost an hour. Yes…we were late. I was very apologetic. They were so gracious I wished I had flowers, chocolates, coffees or all three in hand. We went right in.

Riley immediately asked for the Winnie the Pooh and Piglet too DVD (from his previous 2 visits to Children’s Hospital) while looking around for the TV. I knew there would be no TV or DVD's and being the seasoned autism mom, remembered to bring along R’s iPad to distract him. See. I’m learning.

The doctor came in and was getting organized.

Dr:  Have you ever had an EEG Riley? 
R:   Yes Peter.
Me: *noticed ‘Peter’ had a name tag on - pretty sure Peter has rarely been referred to by his name before.*  
Dr:  *double take then smiles*

A few more questions and the fun began.

The technician was not wearing a visible name tag so “we” didn’t get her name. She was very nice but no Lovely Leanna so let’s just go with Nice Nancy.

Nice Nancy began to mark R’s head while he played Word Search on his iPad. He grimaced a bit…not so much from pain but more from the idea of someone touching his head.

Then came the wires. This time they used a paste to attach them as opposed to glue which was much quicker and ummm…easier.

Finally done...
He looks "happy" doesn't he. Don't be fooled. He was not.

Nice Nancy asked if I thought R could do a couple of “tests” (deep breathing and a flashing light). I said we could try. 

Then it was time to dim the lights.  

Now the last 2 times, we had to do a “sleep-deprived” EEG. As an “adult”…this was not requested. Lucky for us, R usually gets up between 3:30-5am soooo I was pretty sure he would fall asleep.

Nice Nancy instructed Riley to close his eyes and to try to relax. R closed his eyes and well…ummm…relaxed. Did I mention that R’s “stims/tics” get exasperated when he is under stress??  Yea. That.

Then Nice Nancy asked Riley to take some deep breaths. We both modelled for him. He copied. Sort of. He breathed in and out so ummmm…deeply that the likelihood of him hyperventilating within 6 breaths was enough that Nice Nancy had him stop.

We did not try the flashing light.  

Nice Nancy was most patient and kind. She gently asked him…“Riley can you relax your face?" followed by "Try to keep your head still?"...then "Try not to move your eyes.”  So, so patient.

That is until R decided he did not want to relax his face or keep his head still or not move his eyes. 

At this point he banged both his fists into the bed with enough force to make the bed shake.

Nice Nancy made no more requests of Riley. 

A little later Nice Nancy whispered to me if I might be able to get him to lessen his facial movements. I explained they were tics and the more stressed he is the more apparent they become. Nice Nancy nodded and we carried on.

About 2/3 of the way through R finally fell asleep. For about 3 minutes. Then we were done.

Thankfully he was a little groggy and Nice Nancy was quick to remove the wires and start to wipe his head down with some water.

NN:  I’m sorry Riley. I’m just trying to get the paste out of your hair.
R:    That’s ok.  STOP GETTING ME WET!!!  *brushing off his clothes* 
Me:  You’re ok. It’s just a little water.  (Pretty sure only a drop or two landed on his shirt)
R:    This is SO STUPID!  *still brushing off his clothes*

And with that…we were done and off to collect on R’s incentive. 

 Two bowls of plain udon with a Sprite with no ice. A small price to pay indeed. Results to come.