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: 12^th 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.

R:    HEY…YOU’RE GETTING ME WET!! 

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. 

Sometimes it’s the little things…

It’s not always the big things in Riley World that can confuse me. Like...

  

Why does he like to watch the same 7 sec sequence of a movie over and over AND OVER again?!?!? 
OR    

Why does he fold/pile his underwear in a certain order?!?!?  

Nope. Not always.  Sometimes it's just the little things. Like...

Why does he smell so bad?!?!?

I may not have the answers to the first two questions BUT…I do for the third. Yup. Cause I’m an awesome and veteran autism mom. That’s me.

Whenever Riley has ummmm “teen scent” and is in need of assistance, all I have to do is say “I think you need to put on some deodorant” and he replies with “I’m stinky! Bleeeech!!!” and off he goes to put on some deodorant. Problem solved.

Yesterday I had to remind him about 4 times. This hasn’t happened since puberty! WTH!?!?! 

Today I just happened to be in his bathroom when he came in to de-stink and I noticed this…

I wonder how long he’s been scratching his pits raw?!?!?  

On the schedule this week....Stick Deodorant Basics 101.  ;)

All is CLEAR!!! #Ten Things of Thankful

This week was the week I was actually going to remember to write my thankfuls down as they happened. Yup. It was.

Weeeeelll…by Monday I forgot.  *sigh*

So THANKFULLY (this so counts as number 1) I got some super fantastic news that I think also qualifies for the remaining nine seven. I’m invoking the TToT “who needs 10 when you can cover it all and MORE in 7” rule.  :D

My sister was diagnosed with bladder cancer a couple of months ago. The waiting...testing...waiting has been agonizing. On Thursday afternoon she got the all CLEAR! SOOOO Thankful!!! 

Cancer.

It is a terrifying word.

If you are “lucky” you may come away with a "new lease on life". 

I used to hate that phrase new lease on life. What a load of crap! 

And then…it happened to me.

And then...I knew what that meant. 

Eight years ago when my mom and I were going through our own cancer treatments my sister was the rock of the family. Let’s just say that I have been more like gravel…crushed gravel for her. Sorry sis.

Eight years ago my mantra (which I took from my experiences in Riley World and as I try to use now) was “One day at a time; think positive; and most of all…try and keep a sense of humour.”

So in keeping with the last part of my mantra, here is my list of thankfuls for my sister...

2.      You can skip the chemotherapy although you will have to undergo 6 preventative BCG treatments which does not sound like a whole lot of fun. You got this!!

3.      You can bypass being zapped with external beams of radiation. Instead you will have toxic bacterium put directly into your bladder via catheter. Wait. I think I prefer being zapped.

4.      You can stick to your 2 piece bathing suit and forget about a 3 piece bathing suit (one for “the bag”…hey…your husband came up with that one) as opposed to my single boob bathing suit (okay so I came up with this one).  :)

5.      You can keep your hair although once my hair grew back I got a new “do” and decided to let my highlights grow in naturally. Ummmm…perhaps this is the reason I now look like your mother instead of your younger sister. Ouch.

6.      You may not get to celebrate with a wig burning party but perhaps a bladder blowout party could work. Shall I start sending out invitations???

7.      And last but most definitely not the least…there was "NO invasion of cancer into your bladder muscle or other organs". Woo-hooo!!!

I heart you Seestor!

And of course because I can't have you looking better than me...

ummmm...after all it is MY blog

Don't forget to head on over and check out what others are thankful for this week. Even better...give it a try and link up! You'll be thankful you did.  :D

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

Operation IFO (Increase Food Options)

If you follow us on Facebook you are probably aware that we have begun Operation IFO (Increase Food Options) in Riley World. 

Image from MorgueFile

Since we decided to take the summer off in Riley World, I, in all my infinite wisdom, decided that come September I would refocus my energies on some things that I have let slide over the years.

One of my goals this fall will be to try and increase the number of food options that Riley will eat. I admit it. Over the past 4-5 years I have slacked off. Riley has never had a very extensive menu but lately things have dwindled down to only a few options for each meal.

*Disclaimer:  I am not recommending you try any of my strategies with your own child. Much has led up to the tactics that I have employed here. Fifteen…yes 15 years in Riley World. Desperate times have called for desperate measures. I kid. Maybe.

Trust me…I am not going into new territory here. For the moment I am only trying to reintroduce foods that Riley used to “eat”. One thing I have noticed these first few days is that the gagging and dry heaving which used to bring us both to tears have not shown up. Yet.

Here is how the first few attempts went down. I promise after this post I will only bore update you via Facebook. Unless of course we hit a major breakthrough or I have nothing else to write about.  ;)

Day 1 Lunch:  Homemade Cheese Pizza

In the past Riley would "eat" Pizza Hut cheese pizza. I know what you are thinking…homemade pizza is not the same and you would be absolutely right. However after 15 years both Riley and I are a little more flexible let's face it...I am...just...tired so homemade pizza it shall be.

Me:       (In my excited voice)  Riley I’m going to make pizza for lunch.

R:         (Grumbling)  Like Pizza Hut.

Me:       Yes!  Would you like cheese pizza or pepperoni pizza?
             (Note: R does not eat pepperoni however "choices" work well.)

R:         Cheese pizza.

Me:       Alright.

R:         Just say ok please.

Me:       OK.

R:         That’s better.

We are also working on eating/biting into said pizza by the slice as opposed to serving up small bite-size pieces. Go big or go home I say.  

After much grumbling, complaining, table-slapping, yelling, picking, and let us not forget…positive reinforcement and well ummm negotiating, R managed to choke down eat 3 pieces of a personal size pizza. Attempt numero uno…COMPLETE!

Day 2 Lunch:

I decided to go back to the ol’ “First…/Then…” technique.

Me:       Riley would you like soup or hot dogs for lunch? (soup being his preferred choice of late)

R:         Soup please. (Sounding happy and pleasantly surprised)

Me:       Sure. First cheese stick; then soup.  Bazinga!

R:         Just soup please.

Me:       (No response. I just walked away. Walked away quickly.)

When I called him for lunch he came down to find this at his place at the table.

  

Before he even sat down… “It tastes terrible!”

Now for those of us who have no food aversions being “particular” can be unimaginable or difficult to understand to say the least. After all, it is not unusual for kids to be particular eaters right??  In Riley World it goes beyond what one might consider a reasonable dislike/aversion of certain foods. To better explain some of the challenges we face in Riley World, here is a great article “How to Help a Selective Eater” by Snagglebox. Bec writes the most awesome stuff!!!

Back to the cheese stick. Now of course I knew there were alarms going off all over Riley World about said cheese stick. You saw the picture right?? Go ahead…scroll up and look again. It is not the most attractive piece of bread. It has bits and pieces of yucky stuff on top. The texture is sure to be well…bumpy. YUCK!!!  Ten years ago I would have never attempted anything close to a cheese stick. Ten years ago I would have stayed the course of his limited diet. Ten years ago I had no grey hair either. Ok. Maybe some. HAVE YOU SEEN ME NOW!!! 

Me:       Riley. First cheese stick then soup.

R:         (Picking away at the cheese bits)  I’m all done.

G:         Can I try Buster?

R:         Sure dad.  (Relieved to be rid of one of them off his plate)

G:         Mmmmmm…it’s good. You try.

R:         (Still picking)  I’m not hungry to eat this cheese stick.

Me:       How about you eat just one piece?

R:         (Totally relieved)  Ohhh.kay. That sounds good to me!

Me:       (Quickly remove one off his plate)

R:         (Still picking. Gingerly takes a bite.)  How many more?

Me:       All of it.

R:         (Grumbling)  All of it.

Riley did manage to eat the cheese stick. Soup was on standby and in front of him before he swallowed the last bite. I am counting this as a SUCCESS!!

This has become quite the epic post so before I sign off I am going to leave you with a few observations which will also serve as reminders to me over the coming days…weeks…months…years.  *sigh*

·         Portions must be small enough that when stuffed into R's mouth in its entirety…will not require the Heimlich maneuver. 

·         NO eye contact. If he even suspects you are glancing his way you will hear “You are looking at me! STOP LOOKING AT ME!”

·         Do NOT engage in verbal communication. Any form of conversing will illicit any of the following complaints multiple times “This tastes terrible! or How many more? or I’m not hungry anymore. or This is different.”

Seriously…are we only coming up to day 6 of Operation IFO?!?!?  Heaven help us. 

A Woman's Week at the Gym...

Since this past Wednesday I have been working at a job out of the house. I know! For the next 2 weeks. Full time. Blogging, Twitter and FB time has and will be significantly reduced. You are disappointed I know but these things happen. You will be OK. 

During this brief work stint I will do my best to keep you informed on any earth-shaking news in Riley World or else just pass along humorous and trivial information. So as not to disappoint let's get started with the latter.   

Although I have never had the opportunity to have a session with a personal trainer I somehow think this is how it would turn out for me too. 

Dear Diary,

For my birthday this year, my husband purchased a week of personal training at the local health club.

Although I am still in great shape since being a high school football cheerleader 43 years ago, I decided it would be a good idea to go ahead and give it a try.

I called the club and made my reservations with a personal trainer named Christo, who identified himself as a 26-year-old aerobics instructor and model for athletic clothing and swim wear.

Friends seemed pleased with my enthusiasm to get started! The club encouraged me to keep a diary to chart my progress.

Image from Wikimedia Commons

MONDAY:

Started my day at 6:00 a.m. Tough to get out of bed, but found it was well worth it when I arrived at the health club to find Christo waiting for me. He is something of a Greek god-- with blond hair, dancing eyes, and a dazzling white smile.  Woo Hoo!!

Christo gave me a tour and showed me the machines... I enjoyed watching the skillful way in which he conducted his aerobics class after my workout today. Very inspiring!

Christo was encouraging as I did my sit-ups, although my gut was already aching from holding it in the whole time he was around. This is going to be a FANTASTIC week!!

TUESDAY:

I drank a whole pot of coffee, but I finally made it out the door.

Christo made me lie on my back and push a heavy iron bar into the air then he put weights on it! My legs were a little wobbly on the treadmill, but I made the full mile.  His rewarding smile made it
all worthwhile. I feel GREAT!  It's a whole new life for me.

WEDNESDAY:

The only way I can brush my teeth is by laying the toothbrush on the counter and moving my mouth back and forth over it.  I believe I have a hernia in both pectorals.  Driving was OK as long as I didn't try to steer or stop. I parked on top of a GEO in the club parking lot.

Christo was impatient with me, insisting that my screams bothered other club members. His voice is a little too perky for that early in the morning and when he scolds, he gets this nasally whine that is VERY annoying.

My chest hurt when I got on the treadmill, so Christo put me on the stair monster. Why would anyone invent a machine to simulate an activity rendered obsolete by elevators?  Christo told me it would help me get in shape and enjoy life.  He said some other crap too.

THURSDAY:

Butt hole was waiting for me with his vampire-like teeth exposed as his thin, cruel lips were pulled back in a full snarl.  I couldn't help being a half an hour late -- it took me that long to tie my shoes.

He took me to work out with dumbbells. When he was not looking, I ran and hid in the restroom. He sent some skinny witch to find me.

Then, as punishment, he put me on the rowing machine -- which I sank.

FRIDAY:

I hate Christo more than any human being has ever hated any other in the history of the world. Stupid, skinny, anemic, anorexic, little aerobic instructor.  If there was a part of my body I could move without unbearable pain, I would beat him with it.

Christo wanted me to work on my triceps. I don't have any triceps!  And if you don't want dents in the floor, don't hand me the darn barbells or anything that weighs more than a sandwich.

The treadmill flung me off and I landed on a health and nutrition teacher.  Why couldn't it have been someone softer, like the drama coach or the choir director?

SATURDAY:

Satan left a message on my answering machine in his grating, shrilly voice wondering why I did not show up today. Just hearing his voice made me want to smash the machine with my planner; however, I lacked the strength to even use the TV remote and ended up catching eleven straight hours of the Weather Channel.

SUNDAY:

I'm having the Church van pick me up for services today so I can go and thank GOD that this week is over. I will also pray that next year my husband will choose a gift for me that is fun -- like a root canal or a hysterectomy.

I still say if God had wanted me to bend over, he would have sprinkled the floor with diamonds!

Hope you enjoyed my first #FridayFunny courtesy of our Fairy Godmother!   

Have a great weekend everyone!!!

Bowling Playoffs...the Finale!

Riley’s first season of Special Olympics 5-Pin Bowling came to a close tonight and what a season it was. If you have a special needs child/teen/adult it is a wonderful organization to be a part of. I can not say enough good things about our experience.

When Riley was younger the idea of joining “team/organized” sports without a support person (or with me or G) was not in the cards. The stress was frankly more than any of us (ok...mostly G...I'm KIDDING...geeez) wanted to deal with at the time. Now-a-days, although at times still ummmm tense, Riley has enjoyed putting on his team bowling shirt and cheering on his team mates as well as fellow bowlers every Thursday night.

And thank goodness for volunteer coaches and scorekeepers…especially when they are young, blonde-haired, blue-eyed, Fair Maidens. *wink*  Remember R is almost 19.  :)

Riley started the season being able to handle playing only 2 of the 3 games with scores of 90 and 40. Eeep…it was a little rough in the beginning. Even though it was stressful for him that first night his enthusiasm (as evidenced by his now famous spin-o-rama/happy dance after a strike) shone through.

He ended the season tonight bowling a 121, 166 and 163 with a season high score of 242 (which included 5 strikes IN.A.ROW) and one other game over 200. Not too shabby for his first season.

Next up…Special “O” Bocce Ball and Golf and Challengers Baseball. Looks like we may end up with an athlete in the family after all.  Foooooore!!!

Zumba & Me

Yesterday afternoon I went to another Zumba class with a girlfriend. OK. So it was only my second class in about ummm 3 years. In case you are not aware of all the hype around Zumba you can watch this YouTube video:

  

Yup. This video is what Zumba is all about…or at least that is what “THEY” want you to believe. Did you watch at least the first 30 seconds?  Buff bodacious bodies…on the beach…in a disco (or wherever people Zumba). 

I call  BULL SH*T!!!

Of course I will elaborate.

It all started the other day on Facebook with this picture on a friend’s wall. Of course I had to make some snarky comment and the next thing you know I was going.

We got to the gym and were waiting for the class to start. You know that feeling like you have met someone before? Well guess what? The instructor…her son and Riley went to Gymboree together. I know! Over 15 years later and our paths cross at a Zumba class of all places. 15 years later and she is still looking svelte, in amazing shape, perky as all heck and I…well…am…well…not…any. of. those. things. What the hell was I thinking introducing myself!?!? 

Now I like to think of myself as somewhat coordinated. After all I took tap dancing and baton as a kid, played musical instruments in elementary school, and even played sports in high school. So makes sense right???

Well according to G…not so much. Back when we were still all googly-eyed over each other (yes we actually once were) and practicing our “first dance” for our wedding, I remember the words “two left feet” and “dragging around a sack of potatoes” coming out of my soon-to-be husband’s mouth. What the hell was I thinking?!?!?  Baaahaaahaaa.

So in we went. The room had mirrors plastered all over one ENTIRE wall! We were facing THAT wall. THAT wall was NOT my friend. AT ALL! Those mirrors?  I am positive they bought them from going out of business Fun Houses because there is no way my leg was only going a (as in one) foot off the ground. It was at least up to my shoulders if not the top of my head!!!

Then came the combination salsa/samba/Bollywood and belly dance moves. Let me just say the “magnificent middle” body that I have acquired and Zumba will never be friends. This body is not made for gyrating hips, Gangnam-style galloping or graceful chasseing back and forth. I consider myself extremely lucky I did not trip over my two left feet or knock myself out with my flailing arms.

My fingers are starting to seize up and before I end up having to crawl to bed I will stop here. Believe it or not I will be going back. That is why they make you pay in advance.  Haha! 

Oh and just so you know...this is a more realistic picture of the Zumba class I went to. 

A Glass Half Empty...

My glass has been half empty this week. Every so often things seem to wear me down. The change in weather…could be; added stress of R’s EEG…maybe; lack of exercise…absolutely NOT! Whatever it was…sometimes things are just blah. I am sure I am not the only one out there that has these moments. Right???

I mean the weather has definitely changed. The rain has started and with DST it seems like it is dark most of our waking hours.

Stressed out more than usual? Well if wearing my mouth guard all day is a sign…OK…slight exaggeration but my teeth feel like they are going to crack from clenching so hard. Since I did spend an awful lot of time in the dentist’s chair earlier this year it would suck  be a total waste of money be a darn shame if anything happened so instead I chose to refill my half empty glass.    

G is of the opinion I should reduce my alcohol intake. Yea…like THAT’s gonna happen! I mean I would…only I have worked really, REALLY hard to get to where I am and I am NOT a quitter!  :)

Sure I could probably use more  some exercise to have more energy and of course for fitness. One of the things that I blame for my recent physical demise is this thing called menopause. It sucks! The other is the fact that I detest exercise more than my muffin top and back fat. *sigh*

So until my big girl panties get too small (at which point I will move on to “Granny undies”…you do remember how I feel about exercise right?) I will restock the fridge regroup over the weekend and repair my rose coloured glasses with some duct tape cuz that’s how we roll in Riley World. 

Be sure to come back on Monday and prepare yourself to be enlightened with this week's Monday Listicles.

The EEG Experience

Imagine my relief when out through the doors walked a familiar face…the same technician we had 3 years ago when Riley had the ambulatory EEG done. She was wonderful back then and even wonderfuller (yes I know that’s not a real word) now.

She remembered us. Now this could be taken as a good sign or…not?!? I am going to go with the positive. Humour me. She remembered that Riley liked Winnie the Pooh DVDs the last time we were there. (Yes I know it too was in R’s file…she is still wonderful in my books!)  She had 2 DVDs on the counter ready to go. Being well versed in social etiquette R responded with a “No thanks. I don’t like that.” At least he’s polite. *sigh*  Off she took him to pick out something else. Did I mention how wonderful she was? 

When we finally got settled the technician began to ask the usual routine questions. She started with Riley. “How old are you Riley?”  “I’m 18 years old Leanna.” Wait. What? Who is he talking about?  

She continues. “What grade are you in?” Meanwhile I am frantically looking at her to see how she reacts to being called Leanna. “I’m in grade 12 Leanna (again with emphasis on the name).” That’s when I notice the nametag.

I am not sure how long it had been at that point. Maybe 5 minutes. Possibly 10. Probably somewhere in between. Regardless of how long, for all that time I spent talking with her; looking at her; I was too stressed to notice she was wearing a nametag. Riley noticed. What I am able to “filter” out when I am stressed, Riley takes in. This part (sensory processing) of Riley World is a part that can make it difficult for him to be able to cope at times.

Here is an example of how I can only assume it might feel to be in sensory overload. I remember a memory game I used to play. A tray with a number of items would be brought out. You would look at the tray for a set amount of time then the tray would be taken away. You would then have to try and remember as many items as you could. I feel my shoulders reaching for my ears thinking about it. Now imagine playing that game in a dark, dingy basement with poor lighting; there may be a slightly unpleasant odour in the air; rap music (ugh) playing loudly in the background; oh and just for added fun...you need to remember at least 90% of the items. How are your shoulders feeling now???  A little stressed???  This feeling?  I can only imagine to some degree is how it is in Riley World every. single. moment of every. day. I digress. Back to the EEG.

Lovely Leanna. I heart professionals like Leanna. She started by making marks on Riley’s head.  

“Ouch! That hurts!” Lovely Leanna would apologize. R would immediately reply in his sweet voice “That’s OK Leanna.” followed by “Shut up you stupid pencil!”  Replace 'pencil' with other objects in the room. Rewind and repeat multiple times.

Next came attaching the wires.

“Hey! You’re hurting me!” Lovely Leanna would apologize. “Oh it’s OK Leanna.” “Shut up you stupid glue!”  Again…replace, rewind and repeat.

Once again we have come to a new fork in the road. At 18 when Riley is stressed he does not want to be comforted by me holding his hand any more.  He does not want me to cuddle with him any more.  He does not want me to lie down with him any more.  Yes this is a good thing in so many ways (he is, after all, 'physically' a young man) yet I am struggling with how to try and make him feel better? I tried to redirect his attention to the video store and McDonalds (his choice of incentives picked beforehand). When this stopped working I tried saying nothing. I sat beside the bed with my hand on top of the blanket over his hand. It is always a crap shoot with chances of hitting the "meltdown button" getting higher and higher as time goes on. Thankfully we were almost done.

“I’m tired.”  Lovely Leanna would say “I know you’re tired. You can go to sleep in a few minutes.” R came back with “NO! I’m NOT tired anymore.”  Oi-vay.

A few tests to make sure everything was working then it was time to dim the lights and hope that R would fall asleep.

“Shut up you stupid!  That’s stupid!  I don’t want to go to sleep anymore.  This is stupid!”  Again...rewind and repeat. 

In the end Riley did fall asleep. He was more than happy to have everything taken off and head to the video store and McDonald's for a job well done! A small price to pay for a stressful afternoon. I, on the other hand, had a nap and an adult beverage or two when we got home. Results due tomorrow. 

Going for an EEG (the Sequel)

Did you know about 1 in 4 autistic individuals may begin to have seizures during puberty? Riley was almost 15 when he was diagnosed as having Complex Partial seizures. He has been on medication since diagnosis and has been seizure free to date.

This Wednesday at 1:00pm Riley will be going in for another diagnostic EEG to see if he is still having seizures as we have noticed some behaviours lately that are similar to previous symptoms. An EEG is the only way to monitor seizure activity before making any adjustments to his medication. 

The first time Riley had a diagnostic EEG it was inconclusive so a 24 hour ambulatory EEG was required (an entire blog post in itself which I will save for another time). In preparation for the EEG, it is best if Riley is sleep deprived as they would prefer it if he falls asleep during the test (something that did NOT happen the last time). This means keeping him up until midnight on Tuesday night and waking him up at 5am. Since his appointment is not until after lunch that means he can go to school in the morning. Lucky them. I have my reasons. No need to judge too harshly here.

We are 2 days away from the test. Time to let Riley know this is going to happen. How do I go about preparing R you might be wondering? Well since this is not his first time; R is 3-1/2 years older and much more cooperative than when he was younger, I am going to start at the most logical point. I go to his visual schedule and add “Lunch at Home” on Wednesday. Yup you read that right. Seeing Lunch at Home on a school day is THE best thing EVER in Riley World. I later added doctor and hospital to his schedule and had a brief chat about it with R who, by the way, was more interested in adding McDonald’s after the hospital to his schedule.

So for tonight we are done talking. The hospital has a great on-line photo book explaining the procedure that I will go over with Riley tomorrow.

I will be sure to let you know how it all goes.  Wish us luck!  

Special "O"lympics...5-Pin Bowling

It has been a somewhat trying week in Riley World what with the start of R’s final year of high school and all the unknowns. Let’s just say I could have been the new face of Debbie Downer. Not to worry, after last night I have regrouped and have a new attitude *fingers crossed*.

Why the sudden turnaround? Well Riley joined and went to his first Special Olympics sports program last night. It was the start of the 2012-2103  5-Pin Bowling season. What once would have been a recipe for disaster due to the noise, having to wait and take turns…G and I sat back and watched as R sat with his 4 other teammates in a bowling alley that dates back to the 1960’s (I’m not kidding) along with 80 other athletes, scorekeepers and spectators. I KNOW! Who’da thunk it?!?

They got started promptly at 6pm with a little warm-up set to some upbeat pop song. R even got into the beat of the music shimmying in his usual Riley fashion. Remember the aquacise in Mexico???  Enough said.


Then they got bowling. Without going into all the gory details (will leave for another post) of how R’s bowling “career” came to be…to see him participating and cheering on his teammates put a permagrin on our faces. The highlight was when Riley got his first strike somewhere in the middle of the first game. He threw both arms up in the arm, twirled around in a circle, yelled out “Strike” and repeated this move 2 more times on his way back to his seat! Are you smiling too about now? (He takes after his Auntie S when it comes to his enthusiasm…tee hee.)

We did have to pack it in a bit early as it all got to be a bit overwhelming for Riley but I’m not going to mention that. Ooops…too late.  :)  Hopefully next week we’ll be able to get some footage of R’s signature bowling happy dance. I'm sure you are all dying to see it...right???

To tide you over until then…here is a clip of Patti LaBelle singing my new anthem.

The Aftermath of Dental Surgery

Well we both survived!!!  I broke the news to Riley the night before he was to get his wisdom teeth out by placing a “social” story at his place at the table. Yes I am a woosie. In my defence he is a visual learner.

Thankfully Riley’s appointment was first thing (8:30) in the morning. On the wise advice of a good friend (who is a nurse) we prepped the back of Riley’s hands (for the IV) with an Emla patch (which is a topical anaesthetic) first thing in the morning. R was muttering all the way to the dentist’s office about being grumpy and me not leaving him. I know…melted my heart…the "me not leaving him" part that is.

Nurse Lisa came to get us right on time. R was weighed and lucky for everybody in the office, we were put in a room right beside the reception area. Oh joy. I asked Lisa if the room was sound proof and when she answered no but not to worry, I suggested perhaps she might want to find some earplugs for the staff and waiting patients as a precaution. Seriously I did say that. She hesitated just that little bit extra before trying to brush my comment off with a very weak and guarded haha.

Lisa was a God send. She talked directly to Riley then would look in my direction for confirmation which in every single case was the total opposite of what R answered. Remember Riley likes to be agreeable and when stressed will pretty much just repeat what was asked. eg. Do you like mouthwash Riley?  Yes I like mouthwash Lisa. R hates mouthwash. Have you ever gargled before?  Yes I've gargled before Lisa.  R has NEVER gargled in.his.life! You get the idea.  

The entire time R kept repeating “Don’t leave me. Don’t leave Riley T.” interspersed with “I’m grumpy.” I stayed with R and tried to distract him while they put in the IV. He “screeched” just a little and yelped “Hey…you pinched me! That hurt!”

Watching R go under was kind of scary this time. He started to cough and gag a little. I thought he might throw up.  Within a few extremely long seconds he was asleep. The procedure took less than 30 minutes. The surgeon was very “perceptive” and suggested I come in sooner rather than later after they were done. Excellent call.  ;P 

I was a little LOT nervous as to how R would come out of the anaesthesia. He was quite disoriented as expected and rather grumpy also as expected. “Shut up you stupid lady!” and “He hurt me!” were his words of choice this time…a far cry and much more pleasant experience than the swearing and cussing the last time around.

Now I am pretty sure they were as happy to let us go as we were to leave. Trust me, I in no way felt rushed or pressured to leave and was more than thankful that we didn’t have to wait around for R to “come out of it” at a leisurely pace. Lisa went over the post-op instructions making sure I knew I could call her later with any questions. I heart people like Lisa!

On our way out the receptionist (who looked like a deer in the headlights) passed me an envelope and said “You can call with your credit card when you get home.” I also noticed they had shut the door to the reception area which pretty much confirmed my suspicions that R was articulating very clearly despite a mouthful of cotton. Not sure who was more grateful to get out of there…her or me. ;P   

For those with young ones who are just starting out, I haven’t always been able to find the humour in situations like these. They were and still are stressful for me (and Riley) yet as he’s grown so has his ability to deal with these types of situations without going into full blown meltdown. For me…humour works followed by a good stiff martini.  :)