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

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. 

Wednesday, 20 July 2016

Let's Try This Again...

After I surprised Riley with a cheese quesadilla for lunch this happened the following day:

Me:  Ri, what do you want for lu..
R:    *before I could finish*   Grilled cheese.
Me:  Would you like a quesadilla or pasta?
R:    *in a dejected voice*  Pasta.
Me:   Red sauce or white sauce.
R:     White sauce.

Of course he muttered the entire time but he did manage to "eat" his way through with only a couple of gags/dry heaves.

I gave Riley a reprieve for one day before attempting the quesadilla a second time. I know. I’m a softie. 

A little insight before watching the video:

·         I cut the quesadilla into 4 pieces as opposed to 6. In Riley World, the fewer the number of pieces (regardless of size) the better.  :D
·         I used “new” crackers (ie. different size but ones he is used to eating) as a “distraction”
·         I am not concerned with table etiquette at this point ergo the conversation.
·         He likes to look at himself in the corner has glass doors.  :)
·         He often associates words/numbers to videos he watches. In this case it’s the number 6 which he often relates to the 6 pillars from the Kids for Character video he used to watch on VHS. Yea…it’s been going on for THAT long. 

Click here if you can't see the video.

The next step...getting him to eat a quesadilla out of the house because no, they are NOT the same. They are NEVER the same.  *sigh*