Monday, 29 July 2013

Our First Family Photo Session
#Monday Listicles

It has been a while since I have done a Monday Listicles post or any post for that matter. Summer was suddenly here and my usual writing routine went out the window. I have a strong feeling that things will not be improving in the coming month.  :(

After reading some fellow "Listiclers", I was inspired to dig out some photos and get back into the game for this week’s topic "10 Photos of Life with Kids”. The first thing I noticed…how on earth did we ever survive before digital!!

I came across some old proofs (circa 1997 - Riley was 3) when we first started having family photos taken. Long story short it was a fundraiser in preschool/elementary school where you got a professional sitting and one 8x10 for $10. Of course they knew you would not be able to refrain from buying at least 1 print of every photo right?? Even still…how could I say no?!?!

Weeeell…at the time of our first ever family photo we were at the very beginning stages of Riley World. It was a time when the word autism was only a word. It was a time though when most everything was SOOOO-O-M-G exhausting!

Out of the 20+ photos that were taken our choices were narrowed down ummm naturally for us. Seeing these pictures was another reminder to me of how far Riley has come in the past 15+ years.

We had tears almost before we got started. *sigh*

Ahhh yes...the ol' arch the back pose.

Looks can be deceiving...R was NOT happy...
He had progressed to the maniacal screaming at this point...
YES...I remember.

Let's move to the floor shall we?
At this point I remember telling G & J2 to just keep smiling,
smiling, smiling...just keep smiling (use your Dory voice here)
as I broke out into a sweat trying to keep R seated.

A:  R was active so I had to make an adjustment to a vice new grip.
B:  Shirt fully untucked but we would persevere. 

Thankfully we got one photo where 
the beads of sweat were not visible 
everyone was "smiling".

As luck would have it the photographer was the same year after year. We chose to believe he remembered Riley's name because of his charming qualities.  :)  He did figure out how to get the best shots and 5 years later Riley had it down pat.  

  J1, J2 & Riley (circa 2002)

Be sure to head over to Stasha's to see her amazing Instagram photos (she is a professional if that makes you feel any better) and if you like photos (like me) check out some of the others. Have yourself a great week!

Friday, 19 July 2013

“Friday’s Fab ‘Autism’ Five”

I posted my first Friday’s Fab Five over a year ago. It was going to be a weekly roundup of favourite posts and bloggers that I had read and wanted to share. The weekly turned into bi-weekly then monthly and now appears to be ummm annual. Eeep. I am going to go with I was busy doing research…yea…lots and LOTS of research.

Just so you know I have not been slacking off I am going to give you a bonus to my first Friday’s Fab ‘Autism’ Four edition and give you five! Cue music.

“Bloggers…Come On Down!!!”

First up is Amy who blogs over at From the Mom Cave. I first read Amy’s blog over a year ago and just recently connected with her on Facebook. She has 2 boys on the spectrum and a warped great sense of humour.  :)  In the past year she has moved on to waaaay bigger things like being published in the Chicken Soup for the Soul “Raising Kids on the Spectrum” edition. Way to go Amy!!!

Blogger number 2 is Bec from Snagglebox. There is not a single post of Bec’s that I can honestly say is my favourite. Okay…maybe this one Real Parent Pinterest made me laugh a little more but everything and I mean EVERYTHING is full of useful and user-friendly information. If you haven’t friended, followed or whatever else there is to do…go do it now. Wait! Maybe wait until you finish reading this post.  ;)

Karen blogs about life with her two younger teenage sons over at Confessions of an Asperger’s Mom. While our worlds are quite different…they are much the same. What drew me to Karen was her sense of humour, no-nonsense parenting style and of course her love for cocktails and wine her sons. We are the same that way.

I first read one of Liane’s articles at Autism After 16 and keep going back for more. Having just been through the end of school life in Riley World her latest column “A Corsage for Caroline” made my heart melt and my eyes leak...just a little. Liane was also included in the Chicken Soup for the Soul “Raising Kids on the Spectrum”. Gee…I sure know a lot of big guns!

The final blogger is someone I just read this past week. Tanya’s post “Why My Son Moved to a Supported Living Home” read like an upcoming chapter in Riley World. I know I will be going back to visit Tanya’s blog to read all about where their new path leads.

I will close with the same words as the last Autism edition because I am late the same words ring true for these five bloggers.  Whether you know nothing about autism, know a little about autism or are just an autism wannabe *wink*, I highly recommend any of these 5 blogs for insight, experience and most of all…humour!

Check them out when you have a chance and have a great weekend!

“Help control the pet population – have your pets spayed or neutered.”
(Sign-off from the Price is Right show)


Tuesday, 16 July 2013

Parenting Fail...

“I was very sorry for you yesterday.” were the first words Riley said to me this morning. (Insert knife into heart, turn and repeat.)  

Last night for the first time in a long time we had one of those moments. A moment that happens in Riley World that can come out of nowhere when you least expect it. Yes there is always a reason although not always clear at the time. Hindsight is 20/20 especially in Riley World.

For the past 3-4 days R’s mouth has been in sad shape. Again. :(  What starts out as canker sores turns into full blown open sores on his lips which he can not leave alone resulting in lips so swollen he looks like a case of botox gone bad. Very, VERY bad.

When his mouth is bad he is Miserable (with a capital M and in bold). I understand. I get cankers too. I am miserable when I get cankers and they are minuscule compared to R’s. Yet like many things it is easy to forget the feeling when it is not happening to you personally.

I try to be a little more accommodating when he is not feeling well in order to try and keep the peace. Of all days he had a dentist’s appointment yesterday. That was a no brainer. Reschedule the appointment. Riley was more than happy to remove the dentist from his visual schedule. One point for me. He got to stay home all day and do his own thing. Two more points for me. I made sure to make him his favourite meal (of the three) for dinner. Yup…another point for me. I placed no expectations on him. Until I did.

I called him downstairs for some Tylenol just before he went to bed. He came down grumbling. I suggested he not be so cranky. Yes I have been at this for 15 years now. Yes I apparently will never learn.

He got angry, started yelling (insert his favourite swear words here) and got very agitated. After numerous attempts to calm him down, I, in my infinite wisdom, yelled back. Just so you know I am not totally cuckoo for coco-pops…this shock value response has worked in the past. You know where I am going with this right???  

We managed to regroup and continued on with our evening. Or so I thought. About 30 minutes later R came downstairs and laid face down on the hallway floor not moving or saying anything. Unusual?  Somewhat. Out of the ordinary??  Ummm…okay…a little.

To say that Riley was distraught would be putting it mildly. It has been a long time since he has let me hold him. It has been an even longer time since he has wanted to lie down with me and just “be”. No talking. Just silence with the occasional whimpering (insert knife into heart again here). In the dark. Reassurance for him. A reminder for me. Riley’s emotions and feelings are as in tune as anybody else’s. His autism only affects how he is able to express himself.  

Image from MorgueFile
I wonder how many more times today I will hear “You were angry with me yesterday. I was at a 5.   Yes I deserve it. *sigh*  Yes I will probably feel guilty for the rest of the day.

Now if you’ll excuse me I am off to look for my noise-cancelling headphones.  :)

Monday, 8 July 2013

Turning 19...


1.having attained full size and strength; grown up; mature: an adult person, animal, or  plant.
2. of, pertaining to, or befitting adults.
3. intended for adults; not suitable for children: adult entertainment.
4. a person who is fully grown or developed or of age.
5. a full-grown animal or plant.
6. a person who has attained the age of maturity as specified by law.

Nineteen (19) is the age of majority ("when minors cease to legally be considered children and assume control over their persons, actions, and decisions, thereby terminating the legal control and legal responsibilities of their parents or guardian over and for them”) as recognized in law where we live. For the majority it is the age when you become an adult or are no longer considered a child.  For. The. Majority.  Three words that make all the difference in Riley World.

Age is just a chronological number in Riley World. A number, in those early years, that would cause a great deal of stress and anxiety for me. Yes me. A number associated with so many benchmarks and milestones that Riley World never participated in.

Physically? Yes. R would be considered an adult. If you saw R walking down the street you would not think twice. Ok perhaps you might look twice especially if he were doing his “Mario” walk or scripting from a favourite Disney movie otherwise…probably not. 

Yet there is so much more to consider when you have a special needs child who turns the age of majority. For us Riley will not be going to post-secondary school. Riley will not be getting a driver’s license. However Riley will be doing things differently just as he always has.

We do hope that eventually Riley will be able to get some type of meaningful work. We do hope that Riley will someday be able to live semi-independently apart from us. We do have a lot of work ahead of us. Hold me. *sob sob*

In the meantime at 19 when the majority of kids are ready to go out and celebrate at their local “drinking establishment” Riley celebrated at home with family. We surprised him with his list of about a dozen DVD's and 2 cases and a six pack…of soda pop. After almost 15 years living in Riley World as long as Riley is happy...we are happy. I will let you be the judge…do you think he was happy??

Thursday, 4 July 2013

Commencement Ceremonies

As promised here is part 2 of “School’s Out…FOREVER”. The Commencement Ceremonies took place at a downtown theatre. The kids were supposed to be there by 6pm with the ceremonies starting at 7pm and hopefully ending by 10pm. That is a LOT of waiting, sitting, waiting, listening and more waiting especially in Riley World. 

It was a given that Riley would not be able to sit through the 3+ hours so we had decided right after my bout with amnesia that he would arrive part way through the ceremonies, slide into his seat and wait for the “T” surnames to be called. We were given the schedule of events and approximate times the week prior. The Class of 2013 had 287 students.  All we had to do was calculate the approximate time that Riley would walk across the stage. Easy peasy right??? 

Not easily discouraged and having learnt my lesson (yet again) about the importance of preparing Riley, “we” (together with our Fairy Godmother (FG) and R’s SEA-Special Education Assistant) brainstormed and came up with a plan.

1)      Riley had never been to this particular theatre. Would it be possible to go for a tour beforehand? Next best thing was an online virtual tour of the theatre.

2)      Riley loves lists! Writing, reading and crossing off items on lists. We had the names of all the students now all I had to do was make up a list so Riley could follow along and cross off the students as they walked across the stage thereby giving him something to do and keeping his hands busy.

·         I printed the names off on 3x5 recipe cards so they would be small yet easy to handle and kept them together with a ring.

·         I highlighted (in yellow) the names of the students sitting in the row ahead of Riley as a pre-warning.

·         I highlighted (in green) the names of the students in Riley’s row so he would know when it was time for him to line-up in the aisle before going on stage.

3)      Riley World LOVES visual schedules. This time I did not forget.

4)      Riley’s SEA had his iTouch and headphones on standby.

All brilliant ideas right?  Once again thank you FG!!  We were prepared this time. Surely the stress would be kept to a minimum. Surely.   

G and I along with Riley’s "ladies" (his current and past high school SEA’s (3 of them), his Fairy Godmother and his current community worker) arrived for the start of the ceremonies. They all wanted to be there for this momentous occasion.  :)  J2 was in charge of bringing Riley to the theatre later. J2 and I were in contact via text throughout the ceremonies. This time we were prepared.

There were 5 columns of names in the program. Riley was in the last column about 2/3 of the way down. We timed how long the first column took in order to get a rough idea when the last column would start. The texting began:

Things started to move along a little quicker than we had anticipated. Eeep. J2 and Riley should have been able to make it downtown in 15-20 minutes. J2 was going to text when they had parked. I was starting to get nervous.

"Haha"???  To be more precise..."You relax! Haha"!!!  TOO LATE!  I was now IN panic mode.

2 minutes passed. 120 looooong seconds. Time to give J2 a little encouragement. For the first time ever I was glad that tone could not be read into my text message.

That's when I lost it!

You knowledge of the downtown core (particularly street names) is not the best. Once the others assured me they were very close I regrouped. For about 2 minutes. That's when I lost it...again!

That was the end of our conversation. J2 was no longer responding. After another 2 or 3 angst-filled minutes J2 found us. Shortly afterwards Riley appeared. He was all smiles at seeing all his "ladies". He was placed in his proper spot in line. He never did make it to his seat beforehand.

Then it was time for Riley to make his way across the stage.

This was his introduction:
"In his first years at Handsworth Riley was involved in the CIBC Run for the Cure, cross-country running and setting up a Snack Shack.  Outside of school Riley enjoys playing Challengers Baseball and Special Olympics 5-pin bowling, golf and swimming. He would like to thank all the students, teachers and "the ladies" for all their support over the past 14 years. Riley wants to take the summer off but his mom has other ideas."

He walked across the stage like he knew exactly what he was doing. That is until he got to the other side. After a brief moment of "now what the hell am I supposed to do?" he was directed backstage to where his current SEA was waiting for him.

Later the principal told G that as he shook Riley's hand R said to him "Nice to meet you." Always the polite young man. Who cares if this scenario did not exactly fit the greeting.  ;)

Tomorrow the last monumental event of the past month...Riley's 19th birthday!

Until tomorrow...

Wednesday, 3 July 2013

School's Out...FOREVER!

Where did the month of June go?!? So many things happened in Riley World that I had intended to blog about. Within a 13 day period we celebrated Riley finishing grade 12 with the formal Banquet, the Commencement Ceremonies AND he turned 19 years old! 

To say it has been overwhelming would definitely be an understatement. Not only is Riley done with school FOR.EVER…there will be a huge transition come September.

I am starting to hyperventilate so I think I will just focus on sharing some of the highlights of the final chapters of school life in Riley World.

The Banquet

Suited up and ready to go.

Riley and some of his favourite "ladies". 

The First Dance

Now I am pretty sure the last time Riley danced with a girl was at his Grade 7 Graduation.

I was not about to take the same stance as he did in Grade 7.
We forgot to practice beforehand...which explains the grimaces. 

R & J2 taken towards the end of the night
...out in the hall
...for the third time
...gripping his headphones and iTouch
...thankfully teeth clenched tightly so screaming "CHEEEEZZZ" kept to a dull roar. 

Just 2 years ago we went through all this with J2. Yet this time was different. There would be no pre-Banquet celebrations. No limo rides to the Banquet with friends. No Safe After Grad celebrating.

Did you just heavy sigh?  I am pretty sure you did. As I wrote this I may have let a heavy little sigh slip out too. But to be perfectly honest I never even thought about all that until now. Why?  Because while it was all happening there was too much to think about in the moment.

I forgot about all the energy and excitement in the air from the kids (and parents) being at a fancy hotel dressed up to the nines.

I forgot about how loud it could be in a huge ballroom with a high-ceiling and close to 800 people.

I forgot to go over what the evening would look like with Riley beforehand.

I forgot about the first dance until I saw the program on the table which in turn reminded me that…

I forgot to write up a visual schedule for Riley and...

I forgot to teach Riley HOW.TO. "DANCE"!

Considering all I had ummmm *cough* forgotten about, Riley did remarkably well and being out in the corridor with Riley where it was nice and quiet was a welcome break throughout the evening.  ;)

It is way past my bedtime so I hope you'll come back tomorrow to watch Riley walk across the stage and read about how we celebrated Riley turning 19.  

Until tomorrow...

Tuesday, 2 July 2013

Paper... #youmightbeanautismparentif

Most people wouldn't think twice when they open a package of copy paper. That is of course unless you live in Riley World.

See that yellow circle?  See how the paper is wavy?? Well according to Riley it is "bented"!  Bented is not good! 

So instead Riley must individually assess each sheet of paper (see how carefully he is picking up the paper) before deciding if it is acceptable to put in the printer. The yellow arrow? It is pointing to the rejected sheets because you know...they were too bented