Why that name

Just a quick note - I chose this title for my blog because if any of you have tried to actually go up the down escalator it is a lot of work. When my son Simon was born, I was figuratively transported to the basement. I was struggling to find out what this meant for our family, and our future. I began a journey on that day, to go up the down escalator. I know it will always be a lot of work to keep going up, but that is what I have to do now to stay out of the basement. Simon has Down Syndrome, but I am choosing every day to make life normal for him and to help us get back to the ground floor. Anytime I forget the joy and stop moving forward, I find myself rapidly descending into the basement again. Thankfully I also have an emergency stop button. He is my Creator and my Father. The One who brings the despair to a standstill when I call on Him. He is my Rock and Refuge. The One I can run to when no one else understands. It may sound cliche, but it's true, I couldn't do any of this without God. He is the reason that some days I can still smile when things are ridiculous inside. That is why the name.

Friday, September 4, 2015

Stained glass windows

When I first started this blog a couple of years ago, I asked an experienced blogger what was important for a good blog. He told me to be consistent and post often. Well, now that I've hinted at one failure, I'm going to enlighten you with many more. (Doesn't that sound like an exciting introduction to an uplifting post?!)

Today was a day. It was a good day. It was a hard day. It was a frustrating day. It was an emotions all over the place and I don't even know what is going on kind of day.

Let me back up a bit. Today was the day that we met Simon's teacher. It was the day that the final reality set in for me, that I was sending my little size 3 boy to kindergarten in less than a week, and was going to trust people to understand him and try to help him with basic life skills. People he has not worked with before. People that don't understand his signing. People who are new to AAC devices. This was a little bit overwhelming. Okay, a lot overwhelming.

I also was reminded of the many frustrations of being a mom, to Simon and to the other kids. Why can't boys use the toilet without peeing all over the seat?! Why can't boys just sit and read books like nice little girls? Why can't the nice little girl not tattle about things that are going on? Why me? Why is my family like this? Yes, I'm being a bit melodramatic, but that's the kind of day it was.

We took a practice run on the bus to the school, to meet the teacher. Simon couldn't stop smiling the whole time. He was laughing and saying, "Go!" every chance he got. He was loving his time on this fantastic machine that was taking him to school. He was so excited to go to school too! He was ready with his backpack, his indoor shoes, his talker, and a snack in his lunch bag. He marched into the school like he owned the place. Which, he kind of did. There were four people there to greet him when he got there and he was loving it.

We got to his classroom - and by we, I mean Andrew, Elizabeth, Simon and myself - and he or course headed straight for the toys. Why not? The teacher and resource teacher joined us at a kid sized table and began talking about Simon's strengths, weaknesses, communication, goals, and all of those kind of grown up things that make me wonder when the adults are going to show up.

He had a great time playing, demonstrated his superpower of selective hearing, read a book in a beanbag chair, and also demonstrated the ever popular "flop and drop" when he couldn't get his jacket done up. It was actually perfect, because then the staff could see that with very little warning, a little thing became a big thing, that with a little help became a little thing again.

I read a blog lately about oversharing about our kids. My goal with this blog has always been to give an insight into my life, the challenges and joys of having a child with an extra chromosome. I've never aimed to shame Simon for behaviour or challenges, and I hope that I can maintain that throughout the development and lifespan of this project.

That being said, I'm not going to lie about how easy it is to have a kid with challenges. Today I lay down on my bed after a frustrating lack of "talker" use (the AAC device that Simon uses to communicate in addition to sign) and cried. I cried because I felt like a failure. Why couldn't my kids be easy? I felt like I was the only one trying to get Simon to use his talker, and was just following him around with it. I felt like a salesperson that no one is rude enough to send away.

One analogy that I've used to try to explain to Andrew about how I feel sometimes in raising Simon is one of swimming. Having a baby is like being tossed into the ocean in the middle of a storm. I had to fight to keep my head up, and find out how to survive wave after wave, while fighting exhaustion, and frigid temperatures. Having Simon was like getting a dock thrown out there with me. Now, instead of trying to keep from drowning, there was a solid surface to stand on. It wasn't stable, for the waves still rocked it, and I had to constantly keep checking my balance to make sure I didn't overcompensate and wind up being tossed into the deep. The doctors, therapists and other support people were the dock. They gave me the tools to stay out of the water, but there was no railing. I had to find the balance on my own.  Today, I gave up for a little while, and took a dip. I managed with the help of my Life Preserver, to climb back aboard the dock, but only after I gave in to self pity and frustration. I decided it was too hard on ME. Too hard, and I should just quit trying, since nothing seemed to be working anyway.

I thought about how I could spin a blog post about how wonderful school preparation was going, and how well he's been doing lately, without including the challenges of waiting for confirmation about school details that drive me crazy. I thought about how pretty stained glass windows were from the inside, without people knowing if there were clouds rolling in to cover the sunlight streaming through the beautiful colors. So I cried. I lay in my bed and thought about how some days are hard. Sure, I try to keep a positive light, but life is work, parenting is hard work, and parenting a child with a disability seems impossible sometimes. Today was a sometimes.

Then we ate supper. At supper, I regained my composure, grabbed the talker for another go round, and dumped the figurative water out of my boots. We used the talker to talk about supper. I helped him find the words burger, coleslaw, vegetables and iced tea. Then he drank all of his iced tea and had milk instead. Andrew helped him find the word milk. Simon of course had to say first that he was drinking coffee, but he's a joker that way. So, now that you all know what we had for supper, you can all stand up and do a little happy dance with me. Why? Because Simon found the word milk. He didn't grump and push the talker away. He found the word milk. He used the word drink. He said the word drink with the talker, and signed drink when the talker said the word.

Now I get to brag a bit. Not about me, but about Simon and how smart he is, and how far he's come. In a previous post I talked about our figurative journey across Canada with eating. At that point he had just started drinking from an open cup, now, he's in BC. Not really, but on our pretend road trip West, he has arrived. He can now drink from a straw (thanks to a little brother who did it first) and has no limitations on how he eats. He eats and drinks like a typical kid. That's a big deal to me, who spoon fed him for a couple of years, and who always asked for a cup for him at the drive thru window because he didn't know how to use a straw. I'm so proud of my son for all he's accomplished when it comes to eating and drinking.

I'm also pleased to announce that he has changed from non-verbal, to emerging verbal. He has a lot more sounds that he can make with his mouth, and having a little brother to copy is helping a lot. On a recent camping trip, we were in the vehicle driving along, and the boys were bantering back and forth. "Crackor, cruck, car, mawn mower." Yup, boys love their vehicles, and especially farm machinery. Mawn mower is actually Ezra speak for combine, and for all intents and purposes they both take things that are tall, make them short and spit the extra stuff out the bottom.

One more announcement, and then it's time to wrap up for tonight. For those of you who don't already know, in a maximum of 9 weeks we will be welcoming a fourth child into our family. Everyone is very excited, and curious to see how this will change the dynamic of our family, and how it will all take place, but, that is something we will just have to wait and see how it all turns out.

Thanks for patiently (or impatiently) waiting for another post, and for following along on this journey that we were chosen for. 

Until next time,