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.

Tuesday, August 26, 2014

Did you see what he said?

Here we are with another post. Two in one day?! What is going on?

I know, things have been a bit slack lately, but I'm trying my best to catch up. That means, that hopefully within the next month I will be caught up to where we currently are in real life, and not just last year life. Come along with me for a brief walk down memory lane.

I have a confession. I judge people. I try not to, but realistically we all do it. We see someone, and we look at them, and make an assumption about their personality, income, social status and so on. In school I was taught that this was called prejudice. It is isn't necessarily a bad thing. It helps us to decide if a stranger is safe to approach. Some prejudice is called instinct. It is a God given gift.

But, judging based on what we think, and not on our instinct is not a gift. That is something that I am trying to figure out how to eliminate from my mind's behavior.

Where am I going with this? When I used to see someone with a disability, I would usually assume that they weren't very smart. If I saw someone who didn't talk, I assumed that they didn't understand. Now, I'm wishing I could go back a bit and see people for who they are on the inside, not what we see on the outside. Why?

Because my son is non-verbal.

That is a hard pill to swallow. I had and still have an idea in my head of what someone who is non-verbal is like. I fight it, because now it applies to one of my own kids, but it's still there in the back of my head.
"Of course he doesn't understand, he's not saying anything."

Oh, the things I have learned.

I remember the day that it hit me that Simon was non-verbal. It felt like a kick in the stomach. It threw my entire day off. I didn't know what to think or where to go. People looked at Simon like I had looked at other people who didn't talk?! That's not fair! He's smart! He can communicate! Stop judging my son!

I waited until his next speech appointment to ask his speech therapist about my question. "Is he actually non-verbal?" The honest reply? "Yes".

Wow. Now what?

Defensiveness of course. No he's not. He communicates. He has over 200 signs! He can tell me what he wants!

But no, that's not how it works. He doesn't talk. He's non-verbal.

Now, I have this conflict inside of me. Do I look at my son the way that I used to look at other people who didn't talk? Do I judge him? Of course not. Why? Because I know him.

I know that he is smart. I know that he is determined. I know that he understands so much more than he lets on. I know that he gets frustrated when people don't understand him. I love him. He's my son.

This boy never ceases to amaze me with what he can do. He pays attention to little details that no one else notices. He sees the little bird on a calendar, when everyone else is admiring the elk in the middle of the picture.

Sometimes I feel sick, when I think of what people used to do to kids like Simon. He would have been institutionalized. He probably would have been doped up on meds, or restrained to curb bad behavior. There was a time when parents tried to hide that their child had a disability. They gave them plastic surgery to "fix" their noses, eyes and tongues. Their tongues were cropped, and then they weren't able to speak. Why are we so afraid of those who are different?

We go to the personal care home to visit people there. It is my least favorite part of being involved with the church. I always feel awkward and unsure if the people are sleeping, or catatonic, or what they are thinking. The people who can communicate, I have no problem chatting and smiling with. It's the people who can't communicate who scare me. Yes, they actually make me nervous.

Now, though, I should be looking at these people differently. They are kind of like Simon, after all. They probably understand, but can't say what they want. Why should I be scared of them? I should treat them just like everyone else. I am a walking oxymoron.

Enter sign language. Simon has over 200 signs that he knows. However, I am the only one in our family that knows the same number of signs. Quite often I get asked, "What's Simon saying?" While it is a wonderful thing to be the interpreter for your child, it is also very limiting. I remember the first time I left him with a non-regular babysitter. My instructions for Elizabeth were to help the babysitter understand what Simon wanted. I'm sure she did a great job of interpreting, but really, who can expect a big sister to spend her childhood keeping track of what her brother is saying. That's not a fair reality. It may be a partial reality for our family, but it's not fair.

Enter communication device. We are now boldly going where no Wiens has gone before. (Maybe other Wiens families have, but not ours.) We are getting funding for an app called Speak for Yourself. It will be Simon's means of communication. He will press a button on the screen, and it will say the word out loud for him. It is somewhere that I did not want to go. I had full hopes that he would learn to speak sooner than later. But now, it is getting later and later, and it's less and less constructive to keep putting it off.  I want people to understand him. I want people to give him credit for what he understands and can do. He will be going to school soon, and kids may start avoiding him if they can't understand him. It's time to give Simon a voice. To let him out. To free him from my good intentions, hopes and dreams that are restrictive.

It still feels like a punch in the gut sometimes to think about him being non-verbal. It feels like I wear a label of failing as his mom. He's my kid. It's my job to teach him to talk. I know that I'm not actually a failure, and hopefully he will talk effectively one day, but for now, I have to learn to deal with where we are and what we've got.

An example of where we are - A couple of months ago, I got Simon to help my fix the vacuum cleaner. With all the hair in our family, the vacuum cleaner head had stopped turning freely because it was gagged with hair. I took out the screw driver and showed Simon where to put it to open up the vacuum cleaner head. We took it apart, pulled all the hair out (gag) and put it back together. On Friday, I was going to vacuum before our company came over for supper. I had the vacuum cleaner out and was about to start vacuuming. Simon came trotting over with the screw driver that he had pulled out of the drawer where we keep it, and put it first in one place and then the other, as we had when we opened it together last time. I couldn't rush him through the process. He had to do both places before I could vacuum.

I can't wait to see where these traits will take him. His steel trap memory. His dogged determination to go outside. His excitement to "drive the car" when we are parked in the driveway. What kind of job will he want? A delivery driver? He could deliver groceries to people from the store. Fixing vacuum cleaners. I am so excited to watch him reach his full potential, whether he uses a communication device, or speaks clearly. I'm stoked to hear him "talk" and to hear what is going on in that blonde head of his.

Until the funding comes in though, I will have to be content with the combination of grunts, signs and the few words that he does say. He did put together a three word sentence the other day. Mom, broken trees. "Mom" was "Nuuuu" and broken trees was signed. I'll take it. He was pointing at the land that had been cleared by the highway on the way to town. Sure enough. Broken trees.

Anyway, he's been playing happily by himself this whole time I've been writing about him, so I should go and join in with the sound effects as we drive cars on the living room floor.

Time to spend time with my son who has Down Syndrome and is non-verbal.

Time to spend time with my son who has Down Syndrome.

Time to spend time with my son.


No comments:

Post a Comment