Monday, 28 May 2018

Something to Smile About...

Since my last post, I have regrouped and gotten back on the roller coaster ride that is Riley World.

Like so many of you were quick to point out, Riley has grown in leaps and bounds over the last couple of years in ways that can not be measured through an “assessment tool”. And that is what I have to remember on the days when I am being tossed back and forth on that roller coaster.

When G and I were recently away, J2 took some short video clips of Riley at Special Olympics Track that I wanted to share with you because they make me smile. And laugh. Ok…REALLY laugh at times but only because it is hard to imagine how two fairly competitive people can have an offspring without a single competitive bone in his body. Yet another lesson to be learned from Riley World. We should all be so sportsmanlike. 

Up first…the “javelin” throw. He winds up...winds up...loooook out...he's looking strong...aaaannd...

Next…the “shotput”.  Couldn't get that dirty shotput out of his hands fast enough to get back in line.

And last but certainly the most heartwarming…the 50M dash. As always, Riley will only go as fast as the fastest runner in a race. If it turns out he is ahead after rounding a corner, he will slow down and wait for the others to catch up. Don't forget to watch his cool down of a hop, skip and a slight "Mario" jump at the end.  

"Let me win. But if I cannot win, let me be brave in the attempt."
~ Special Olympics Athlete Oath

Tuesday, 22 May 2018

Sucker Punched

It’s not like I don’t know that Riley requires support.

It’s not like I don’t know that he will require services for the rest of his life.

And yet…

Today as I sat with our “Facilitator/Social Worker/…” (whatever they call them where you are) going over Riley’s needs, I was caught a little off guard. The last “assessment” tool we completed was in 2013. FIVE years ago. Wait...we did do one last year but if things remain the same, they may not update the report on file. 

To say that is was disheartening to hear that his “needs” have not changed in 5 years is an understatement. I mean, I have seen positive changes in Riley. Yet…the every day skills that he will need to cope are still not there.

They probably never will be. 

Don’t get me wrong.  I am not giving up.  I am not even surprised. It’s just another reality check.

She said that it is not unusual for this assessment tool not to change. It assesses the disability and the amount of support an individual requires.  Ok.  I get it.  That made me feel a little better.  As I said, I know Riley needs support.

It also made me realize that my job as a parent will/may never be done. I will forever be a caregiver. And that’s ok. I love my charge! Because…look at THIS FACE!!!

But quite frankly…it can also suck sometimes.

Tuesday, 15 May 2018

Why It Can Be Stressful Going on Vacation

We LOVE vacations!! Well 3 out of the 4 of us do. We haven’t let that stop us though. Majority rules...right?? 

We had always travelled as a family unit of 4. Two parents, two children.

As the boys got older, in addition to our family vacations, G and I started taking “self-care” trips. What that really means is we started travelling separately with other friends so one of us would be home with the boys while the other was out having a carefree holiday. G on golf trips, me on ladies trips because we all know ladies trips are THE BEST!  

Now that the boys are…well…young men and J2 has once again left the nest, for the most part we travel as a threesome. Two parents. One adult son.

I mentioned on FB, in the almost 24 years, I can count the number of times G & I have been away by ourselves on one hand, give or take a finger. Well this past Friday night, G and I returned home from 3 nights away with 2 other couples. It was glorious! 

I know what you’re thinking…now that you’ve done it, you can do it again no problem. 

Ummmmm….not so fast Sherlock.

Two words.  Riley World.

Riley can not be left by himself. Ever. For safety reasons. So, we need to have someone come and stay in our house for the entire time we are gone. Other than family, it is not easy to find someone who Riley is comfortable with and who is comfortable with Riley. His brother and cousin are first choices but that is not always possible. Regardless of who we do find, it takes a lot of planning. A LOT!

And then there’s Riley’s stress.

Let me back up.

When I first started taking my self-care trips, G would be left to listen to R’s running dialogue of “She’s gone. She’s not coming back.” Throw in the occasional “She’s dead.” and get the idea. Yes, these were all lines from videos he used to watch but still, not easy to listen to over and over and over again.

When I would return home, it was like a knife to the gut. Cue strong feelings of guilt.

Thanks goodness I am thick-skinned. I compare those feelings to giving birth…eventually you forget the pain and do it again. 

And...I was luckier than G as Riley never seemed to go on and on quite so much when G took his trips. Obviously, I'm Riley's favourite parent.

Now-a-days it’s the constant pre-vacation dialogue of “You are going away for 'X' nights. You DO need a vacation. Do YOU need a vacation? etc. etc.”

There are also the post-vacation reminders.  This message from J2 when we were on our way to pick him up.

If he’s awake and waiting at home, often times he will pace and wait by the window.

I messaged Riley and after some back and forth…basically got hung up on if that’s possible when texting.

The following day, every time Riley saw us "You two are back yesterday!" in his happy voice. 

The first day back to his program, I got this message…

So yes, we all managed just fine which bodes well for another trip down the road.

Oh…let’s not forget there was the one t-shirt that was ripped apart. But hey…only one.

That I could find that is.