Thursday, July 30, 2015

Kindness by the Foot(long)

Here's a feel-good story for you...

Today I had the kids downtown for physiotherapy, and had to grab a quick lunch for afterwards since we had some running around to do. Subway seemed fast, cheap, and perfect. We made it just before we all melted into big puddles of sweat because it was SO HOT downtown today, and let me tell you that pushing a wheelchair is not as easy as it looks. You really notice hills you didn't know existed when you are pushing a chair on a hot day!

We got to Subway and there were a couple of young construction workers in line, but I didn't pay much attention. Before long, I noticed the one closest to us was staring at Asher - like didn't take his eyes off of him - but with a smile on his face. Not in a rude way, but in a “man this kid is cute” kind of way. I didn’t even really make eye contact with him because a) I’m a snob and b) I wasn’t sure if I should be creeped out or not. He tried to talk to Asher, but because Asher is shy with strangers, the conversation didn't go far.

We all finished having our sandwiches made and after he was done at the till, he turned to me and said “Oh I bought your sandwiches”. I just stared at him and said “WHAT???” not knowing what else to say! He replied, “Oh I just wanted to. You look like you’re maybe not having the best day and your little guy is REALLY cute”.  I just kept thanking him profusely while shaking my head in disbelief and we all said goodbye and went on our way. Seemed kind of uneventful but I didn't know what else to do?!

I was very touched, and stunned, and talked about it with Rio as we were walking back to pick up Nolan. We discussed the fact that he said I didn't look like I was having the best day, and I wasn't sure whether I should be offended by that because yes I was hot and sweaty, but I didn't realize I looked that bad! But then Asher piped up and said "I took my frown off" -- and then it hit me. I HAD been having a bad day earlier in the morning - a really, really bad day - with Asher in particular. The kind of morning that made me question whether I was cut out to be a good enough mom for Asher as we had an ongoing battle for the 300th time and both of us ended up not very nice or respectful to each other. How had I forgotten that that was how my day had started?!

Yes, I know it's hard to believe this angelic face can channel the devil sometimes, but he can I tell you, HE CAN!

Rio and I concluded that this young man in front of us must be a very good reader of energy and although I didn't think I looked particularly worn out, maybe my energy showed that in fact, my day had not been great. It also got me wondering why he was so enamored by Asher. I mean the kid is cute, don't get me wrong, but this guy was really taken by him. Did he have a friend or a cousin or someone else in his life with a disability and for that reason Asher spoke to him? Or was he just having the kind of day where he felt like helping someone that he thought could use a little help? Whatever the reason, it is not lost on me that the universe is pretty good at showing you that the world can be good and kind, especially when you need to hear it, but are totally not expecting it. I'd say this makes up for the day that I recently had two full-blown-flailing-screaming-kicking-biting-tantrum-ing boys downtown and no one stopped to help me?!!

People are really great sometimes, aren't they?!

Thursday, July 23, 2015

Vegas, Baby!

Last evening Jordan and I returned from four days in Las Vegas - with friends, and without kids! You want all the goods?!

Well too bad, you're not getting them. The saying "What happens in Vegas stays in Vegas" exists for a reason. No one ended up with a tiger in their room (although I was hopeful) or a mattress on the roof, but let's just say there are some details that shouldn't emerge!

What I will say is that a good time was had by all, with memories that will keep us laughing for a good long time. And my best tip (that I'm willing to share anyway): red solo cups are a necessity.








Now back to reality. I'm not sure how happy I am about that - but I'm pretty positive my liver is thrilled for the reprieve.

The kids did amazingly well for the first time being separated from us, but are happy to have us back. They've spent allll morning playing Las Vegas with a room key, an airline safety card, and various props around the house. Flight, hotel check-in, housekeeping, buffet, spa - you name it. Why did I spend an afternoon looking for the perfect souvenirs for them??

Thursday, July 16, 2015

Asher's New Blue Chair

I barely blog and then I post two in one day! Ok fairness, my earlier post was just a Tales from the Vault, reminding you all of Asher's old wheelchair - because today he got a new one!

Ok in truth, he hasn't actually used that old wheelchair in a year. The fact is for the past year we've been borrowing a chair, waiting for the funding to come in for a new one. Asher's first chair, that looked like a stroller, was great when he was two but not so much when he was five and in school. So to get us to the three year mark when it could be replaced, we had a borrowed dealy. Today however, he got his very own new one that will last him five years.

It's cute and blue and lightweight and perfect for him. Here it is, next to his old one:


He is very happy with it and likes the colour. I didn't realize until I re-read the old blog post that he used to call his old chair his blue chair - so fitting that his new one is blue too. And funnily enough later this summer he'll get his own power chair (the one he has now is also borrowed) and guess what colour that one will be as well?!

Aside from getting the chair today, the past two days have been stacked with appointments for the boys. I found it incredibly overwhelming and stressful, and it dawned on me this morning why. Having back to back to back to back appointments with tired, cranky kids is not our norm - but it used to be. Oh boy did it used to be. That was pretty much every day of our lives for four years straight. Since the start of kindergarten, I had more or less forgotten that life existed because we are so busy happily living this life. I've got to tell you that little realization made me feel so incredibly blessed. Our new normal is just that these days - normal enough that I forgot what it was like when it wasn't.

Tales from the Vault - Asher's Chair

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.




It's been a while since I've shared a Tales from the Vault. It's been a while since I've blogged regularly too, now come to think of it! Anyway, I'm sharing this today because Asher got a new wheelchair today, so I thought it was fitting to reminisce about his old one. And look how cute and tiny he is?!!

---

Last week we received the home base for Asher's seating system (read: pediatric wheelchair). The seat itself came as part of a (removable) stroller frame, so the home base had to be ordered separately. The stroller arrived before our trip so we were excited to arrive back and receive the base that will be used inside our house.

The idea behind this whole seating system was that it would support Asher well and allow him to be more successful at the tasks he does while sitting - namely eating and playing. The thought was that if he doesn't need to work so hard controlling his trunk, he will be able to concentrate more on using his arms.

So far, we are seeing success. It is apparent how much less effort it takes him to complete tasks. His hips and legs mostly remain in a neutral position and that is huge for him. Normally, in his high chair or play chair, the first thing he would do when exerting any effort would be to rotate his hips and bend one knee while keeping the other leg into extension. Now, most of the time, his legs hang in front of him like yours or mine would in a chair. So now the next step is to have Asher use his foot rest to his advantage. If he can firmly plant his feet, that will allow him to have even better control over his body. (As you can see in the picture below, he isn't doing that yet, but the chair has only been in use for a few days after all).


The chair has a lot of great adaptations. There are lateral supports (the grey paddles under his arm), a seat belt, a chest harness (which we only put on him when he is concentrating on something like a puzzle, otherwise he doesn't "need" the support), and bendable supports for head control (which you can see behind his head that I have bent to just lie flat because Asher has no problems supporting his head and neck, but if we take it off he won't have anything to lean back on, especially if he wants to fall asleep in stroller form).

The chair also comes with a really great table that slides on and off. We were really pleased to see that was included, as we were trying to figure out how to build a table that could raise or lower in height to go along with the chair. Thankfully that is now not an issue.


As for the base, it is hydraulic, so it can be raised and lowered easily, allowing him to be pretty low to the floor to play, or he can be high enough to sit at our table or counter. It has handles on the back for pushing him around the house, although it isn't very easy to steer on swiveling wheels.


Receiving the home base was a little bit traumatic for me. That is a wheelchair, no denying it. When it is in stroller form, the wheels, handle, and visor make it look like an actual stroller (at first glance anyway). In this form, it clearly does not. I know I will get used to it, and the important thing is that Asher loves it, referring to it as "Azho's blue chay-oh". This chair is so great for him, and for all of us in interacting with him, so it makes everyone's life easier. As always though, no one wants their baby to "need" something like this. Good thing we're all getting pretty used to adapting.

Thursday, July 2, 2015

Let Loose in the Power Chair

We've got Asher's power chair home from school and took our very first outing in the community with it. I feel like this is a milestone I should be cherishing, although I did forget my phone at home so didn't take any photos or videos. And besides, we only went to Superstore and the library, so I didn't think it was going to be that eventful - but it kind of was.

I'd love to be able to report back and say it was amazing and everything I'd hoped for for his independence.

But no, I can't exactly say that.

Don't get me wrong - the independence was great. It was pretty fun to have him cruising the aisles of the grocery store on his own. But I didn't think about how I'd be screeching "WATCH WHERE YOU'RE GOING!!" a hundred times. Apparently, I hadn't really thought this out. You see all I've heard is how great of a driver he is at school, and I see for myself what a great driver he is at home. So why wouldn't that translate to the community?

HA! Rookie move, mom. What I didn't realize is that in the community there's alllllll sorts of distractions - distractions he's never been able to stop and focus on while someone else is pushing him. And "stop and focus" is a term I use lightly. He focuses all right - all while continuing to forge full speed ahead and not pay attention to where he's going.

I should have realized, and going forward I will. At home he knows the turns and corners like the back of his hand. Same with school. And although there are distractions at school (hello - oblivious children that he manages not to plow down!) he has spent all school year getting used to that. So choosing to take him to a busy supermarket with a busy parking lot on his first day out was probably not my wisest choice. It got a little frustrating for both of us, and by the end I think he was mad at me for barking orders at him. Can't say I blame him. That said, ignoring my request to not run over his bag of library books was not really an appropriate outlet for his frustration.

All in all, it wasn't a total nightmare. He didn't run anyone over. He didn't crash into any cars. He didn't drive off any curbs. We all made it home safe and sound although I may have a few more grey hairs.

All it's going to take is practice, and he's got the summer to master it. And now I have tempered my expectations so next time I will set him up for success. I'll take him somewhere more open and with less of a rush. And I will have practiced getting this chair in and out of the car  - a new thing to learn all on its own, and not ideal in the sweltering heat - so we'll start fresh and with more energy.

This was a small bump on what's going to be a long and successful road to independence. And all said and done, I think a pretty good stab at it. Next time though, he's going to rock it. And I'll take video to prove it.

And now we both sit here much more relaxed. He is currently perusing his spoils from the library - a photo I did manage to capture.