It’s Not All Rainbows and Unicorns

Grab a cup of coffee. We’re digging in deep today.

Before we start, please read this post from a mom who has a disability herself and has a child with a disability. Her writing sparked a few robust FaceBook conversations (you should totally friend me so you can be part of those), which is what passionate voices and bold writing should do because respectful conversations are a win-win.

Meriah states that “Disability does not suck. The inaccessibility of our society and the way in which our society does not value disability – this is what sucks. This is what makes it difficult.” Read more and come on back for my thoughts.

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Grab a second cup o’ joe while I tell you what I agree with here.

Yes, living in an inaccessible world most definitely does suck. Yes, I believe we should work together for social change. Yes, being on the receiving end of pity sucks. Yes, we need to appreciate a more diverse culture so each person can be valued. Yes, we need to start presuming competence instead of believing people with disabilities are a bundle of can’ts.

Meriah clearly has a passion for change and making room for everyone. I love that. We need her to keep focused on that goal.

Here’s why I had a bit of a knee jerk reaction to this post. My story is valuable as well, but you, my readers, know that I’m pretty frank about what sucks here in Disability World. I most definitely don’t write just to tell you what you want to hear (inspiration porn, cuz yeah, gross) or to tell you that my life is harder than yours. Remember, your challenges are hard because they’re yours. And yet I do write about the challenges of raising a child with a disability. Because of what I write, it sounded from Meriah’s post that, “my story is actually helping to fray those strands” of those working toward social change. In fact, from readers I’ve heard that the opposite is true.

Let’s go pie in the sky for a moment and consider what would happen if the world really was accessible and people with disabilities were fully valued. First, Hallelujah. But second, for Aidan, no matter how much you value him, he will still have seizures; no matter how many public spaces he can access in his wheelchair, he will still have health risks because of his limited mobility. That sucks and can even be scary. As one FB commenter and woman with a disability wrote, “No two disabilities are the same and I don’t think more access is the end all be all to the “suckyness” of disability.” This most certainly does not mean we don’t work toward greater accessibility, but rather clarify what that does and doesn’t mean.

Let me just call myself out here and do a little bold, passionate writing of my own. You’ve heard me call Aidan’s brain and body broken. It’s hard to write and it must be hard to read, and sure, it’s probably controversial. When Aidan’s brain puts his body in danger, I refuse to call it just different and celebrate it. If you stick around long enough on this blog you will also hear that I celebrate how Aidan is an amazing driver; he walks with assistance, he can learn; and gosh darn it he has the best giggle in all the land. I want you to hear the difference between who he is, his very essence, and how he functions, with a broken body. Aidan’s disability is just one part of him.

This is the place for a more nuanced discussion. My son’s brain and body are broken but he is so fully loved and valued in our home and community. I want to share our story, the good the bad and the ugly, so you will feel engaged and educated and ultimately invited into our world.

I agree with Meriah that the “woe is me” writing can be damaging, but only if that is where a person stays. You’ve heard my pity parties but you’ve also heard my celebrations. I believe there is a way, as another mom stated, to “emphasize the positive and still talk about the negative.”

And here is why ultimately Meriah’s post made me both cheer and cringe – a mom friend of mine who does not have a child with a disability, remarked that it can be hard to engage with people in Disability World because they may be expected to act like disabilities don’t exist or not quite know what to say. This is a friend who has said she reads blogs either because she can related to the writers or wants help relating to them, which is exactly what I want to accomplish here. That’s the worst part for me, when someone feels like conversation is shutting down or leaving them out.

Perhaps I’m naive, but I’d be shocked to find out if I had readers who just want to hear that I’m jealous of their easy lives. Here I write about my biggest pity party and honor that everyone goes through a painful mess at some point. Regardless of the specifics, can’t we do it together?

If we are working toward social change than we need to do two things. First, claim the place where we are and why it needs to be changed. So, yes, having a disability sucks. Second, we need to gather everyone together to make that change and that includes people without disabilities. How can we do that if we don’t share the truth of our stories, the very essence of our selves?

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I want you to know that I engaged Meriah in the comments section of her blog and she acknowledged the more complex part of this conversation – yes the negative should be shared and the conversation should be balanced. 

Also, please do check out her Cool Cats interviews with people with disabilities. They address the challenges of disability and what people like about their disability. Very interesting.

I’ve also invited her here to the comments section. What do you think? How do you view balance and the whole celebration vs. hardships conversation. Robust respectful conversation commence…..

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Day Without My Voice

Drawing inspiration from both Aidan, my non-verbal 12 year old, and Mary, another mom of a daughter who is non-verbal, I decided to spend one day without my voice. I learned so much a few years ago when I spent the afternoon in Aidan’s power chair.

Unlike Mary, I didn’t have much of a plan nor was I really familiar with a particular speech app on Aidan’s ipad. The one we originally purchased for him was not particularly appropriate for him. It was too difficult to find words and not easy to program. I have so much more to say about his ipad use that I will save for another post.

For me and my day without speaking, I mostly used gestures, the notebook on the iPad, and the few buttons on Aidan’s speech app to say thank-you and good-bye.

My day started with me speaking into Aidan’s ear what I would be doing that day. Ironic, I know, but it’s only fair. We were alone getting ready for the bus and it’s usually very quiet between us in the morning anyway. Construction project not withstanding, I cannot remember a time when my doorbell rang at 7:30 am. This morning it did. I didn’t expect my hardest challenge to come at the beginning of the day, before coffee. I quickly typed a message on the iPad, “I’m not using my voice today because my son hasn’t been able to speak for 12 years. It’s isolating and frustrating and I appreciate your patience.”

I answered the door and basically smiled and shoved the ipad in this guy’s face. He was delivering pellets for our pellet stove. He needed to know where to put them. I opened up the garage and pointed. He said the pallet wouldn’t fit in the door. I found myself trying to whisper, which might mean I have a huge propensity for cheating or that I’m not very resourceful or just hugely impatient myself. I took a moment to type that he could leave them outside the garage door and I would deal with it later. He was patient with that interaction but walked away to get the pellets before I could find my thank-you and good-bye button.

First lesson… using AAC (Augmentative and Alternative Communication) takes time. Have you noticed that most people are in a rush?

I went to the gym and then off to Starbucks to write. Lesson 1.A if you didn’t already know….at Starbucks you pay for the love. Right? The coffee shouldn’t really cost 18 bazillion dollars but the Baristas rock. So I may be somewhat of a regular there. The Barista recognized me and said hello. I smiled and showed her my pre-typed order. Pumpkin Spice latte because it’s October, duh. She asked if I had a sore throat. I shook my head and went to find my first pre-typed note about why I was doing this. She waited. She didn’t rush off to do anything else. She just stood there. Then I got my order and she waited again while I scrambled to find the thank-you button. Worth every penny I’ve ever spent there.

Second lesson… building relationships and being known make a huge difference in how we communicate with people.

Then I went home to my broken husband. He threw his back out and was home watching movies. Now my husband and I have a great relationship, but we’ve changed a lot over the years and he does still drive me bonkers, especially when it comes to communicating. In the beginning of our relationship I had to ask a million questions just to get some very basic information out of him. He hated sharing because he felt like he was being interrogated. It was a no-win situation. Over the years, I’ve learned that if I take some deep breaths and just wait, he will share. So, me being non-verbal? My husband spoke and shared all by himself!!! It was pretty awesome. I guess there’s something to say about leaving room for other people.

Then I went to pick up Liam from school. I couldn’t use the ipad because I was driving so I tried to sign to him. I took ASL in college and still have a few words to work with. However, it’s absurd to use ASL with someone who isn’t familiar with it. It was like a big game of charades and Liam and I basically laughed the entire way home. Even a challenge like this one could use a shot of good humor.

Third lesson….it’s helpful to be aware of the different ways we actually communicate. 

Last task for the day was to go to chorus practice. Yes, chorus practice without singing. So I pulled out my iPad with my prepared statement to share with my friend and my iPad went on the fritz. You’ve got to be kidding me. I panicked…. because that is generally helpful. Then I started hitting my ipad because I was sure that was a thing. Turns out if your ipad goes green and you hit it hard in all 4 corners it will right itself. True story.

Fourth lesson…sometimes technology sucks and when it’s your only way to communicate you’re screwed.

As it would happen, the friend that I sit with at chorus is a speech therapist so she took plenty of time to talk with me. She told the friends around me what I was doing so I wouldn’t feel awkward and she included me in conversation. (See lesson one and lesson two). My friend did make a very good point; she asked if I was tired. I wasn’t because remember I had mostly been writing and watching movies with Garreth all day. But I do get how frustrating it can be to use AAC and I’m sure it’s draining to try to be part of conversations that are moving along without you.

Fifth lesson….yes, communication is about so much more than words, but sometimes words are everything. 

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I’m well aware that my day without using my voice in no way mimics a day of being Aidan. He has serious motor planning issues that prevent him from having the kind of success I want for him on the ipad and cognitive processing delays that just make everything harder. That being said, it was still a valuable learning experience for me and I highly encourage you to check out what Mary learned over an entire week of being voiceless.

Wonder Wheels

Welcome new readers. Thank-you for joining us on this journey. Here you’ll learn about including a child with a significant disability in everyday life. I write about wheelchairs and seizures and family and school and all sorts of things in between. Please take a moment to check out our About Us page for my favorite posts and say hello in the comments section.

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If you saw the amazing video about our accessible home remodel project, you may have noticed the line that stated that wheels have changed Aidan’s life. I’ll shout that from the mountain top any chance I get. While it was emotionally difficult to get Aidan a power wheelchair (it looked like a big CAN’T) it’s given him freedom and independence.

Here’s what else his power wheelchair has done; it’s showing me just how smart he is. Check out this video (subscribers please click through to blog to watch):

Yes, Aidan is clearly having fun. But look closer. He made up his own rules to a Keep Away game and kept them consistent. Garreth originally put the bucket in front of Aidan thinking it would be fun to drive into it to make that funny scraping sound. Aidan thought differently. He decided to keep away from the bucket. He’s also mapping the territory around him so he can look at the bucket and drive in a different direction at the same time. I realize he’s in a big open space but we’ve actually seen this skill from Aidan before. His rear view mirrors are in his brain; his neurologically impaired but somehow still super smart brain. This game was so purposeful for Aidan. It speaks to the importance of having high expectations.

His wheelchair is more than a mode of transportation. It’s a communication device and a tool of independence. I’m excited to see what else Aidan has to show us.