love not fear – flashblog

It’s a flashblog, y’all!

What it is: The “Love Not Fear” Flashblog

What it means: (from the LNF site): A flashblog is a day when a group of people share their thoughts about a single topic.

What they asked for: Tell us what “Love not fear” means to you. You can write a paragraph or a blog post, contribute a poem or a video, make a comic or a graphic. Use your imagination. Let’s tell the world that Autistic people should be loved and that Autism should not be feared.

When they wanted the submissions: Yesterday. Oops.

Who can participate: Everyone! The flashblog is open to autistic individuals as well as parents, family members and allies of autistic people.

Here goes …

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The other night, I found myself doing what many of us, as parents of autistic children, often do — staring down the future.

On this particular night, my question of choice was, “What if Brooke lives with us forever?”

This is what we do, you see. In the quiet hours when no one else is there to see. We wander into the dark fields of “What if ….”

The question was framed, as I’ve been taught that it must be, in negative space. Planted in fear, watered by the pervasive and insidious Paradigm of Deficit  — Doesn’t => Can’t => Won’t.  The words, every one of them, reinforcing the supposed importance of that which is seemingly absent, institutionalizing a wholesale dismissal of that which is so beautifully present.

But something was different on this night.

I don’t know why. I don’t know what had shifted, but that night, for the first time, a light shone on the field. 

A golden glow came over the grass — gloriously wild and high and free. It shined on the dandelions — no longer weeds but wishes dancing on the wind. It illuminated the wildflowers — painted with every single color on God’s endless palette. It dappled its light onto the weeping willows and glistened off of the restless water of the lazy, winding river.

It was the most beautiful place I’d ever seen.

And the question …

The question, still made up of the same words, was now entirely different.

What if Brooke lives with us forever?

The fear was gone, replaced by something far different.

Love.

Just. Plain. Love.

Potent and joyful and defiant and brave.

Love.

Unadulterated by fear.

And through its filter, the question looked like this ….

What if I am privileged enough to live my life with this incredible human being? What if I am so blessed that I can skip through that field with her? That we can lie in the grass together and make the wishes and marvel at the colors and take shade beneath the willows and play and squeal and stim and be cleansed by the restless water of the winding river? What if?

It may not be the order of things that I once expected. It may not be the journey upon which we thought we’d set out. But my God, it could, in its own way, be nothing short of an overwhelmingly glorious prospect.

Years ago, I learned a lesson. I met an awesome guy named Matt Trott . Matt has a wicked sense of humor and one of the most infectious laughs I’ve ever heard. He also has Friedreich’s Ataxia, a degenerative condition that affects muscle control and coordination, and because of it, he uses a wheelchair. Matt told me about how it felt to be described, as so many chair users often are, as “wheelchair bound.” He explained that he is not, by any means, bound to or by his wheelchair. That, instead, he is freed by it. Please read that again. It’s important. He is not bound to his wheelchair, he is freed by it.

His chair is the tool that provides mobility, that enables access, that allows him the freedom to be … unbound.

The parallels are not lost on me.

How will we choose to see and frame and LIVE the life we have?

How will we view the tools that allow us, and our children, to live their very best lives? Lives unbound.

Will we remain tied to the fear of what might not be possible or will we allow ourselves to be freed by the boundless possibility of what is? (I’d submit that the latter is only half-heartedly chosen when fear of the alternative remains  its driving force.)

My girl astounds me every day. She shows me again and again just how limited my imagination is, how frightfully narrow my perspective. Every day she helps me too see so much more than I ever knew was there. I will neither impose nor accept limits on that of which she will be capable. There are none.

That said, she very well might live completely independently one day. We might read this together someday and laugh that it was ever a question. Or perhaps she’ll need some support to make it work. Or a whole lot of support. Or, even more likely, something in between we’ve yet to envision.

Or maybe she won’t.

Maybe she’ll be with us.

And if that’s the case, we’ll explore the field together. Making the wishes, marveling at the colors, taking shade beneath the willows and playing and squealing and stimming and being cleansed again and again.

And, my God, my life will be blessed.

 I choose love.

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{Image of Brooke holding a heart that she cut from white paper, painstakingly colored red, and upon which she wrote, “I love you.” Taken and shared with her permission, as always.}

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18 thoughts on “love not fear – flashblog

  1. o my goodness, yes. I have had several of those late-night-gripped-by-fear-how-the-heck-is-this-gonna-work moments lately. At which time I have to remind myself first, that my fear is much, much more about me and the way I handle stress than it is about what I know about how he will be able to handle what may or may not be coming his way. And second, when I let my vision get so restricted by my fear, I am failing to see all the moments that lie ahead where he will simply blow my mind with what he will do, because those moments are as much of a certainty in life as the hard stuff is. So yes, perspective, my friend, it’s all about how we shape our perspective. Happy love day to you!

  2. I need to tell you a story. Today my 11 yr old Autistic son came home from school with a “behavior ticket.” He was nervous about it but told me the truth. “I cheated on my test.” He’s a pretty smart kid, works at grade level but has a one on one aide and rarely takes tests without someone to keep him “on task.” So I’m not sure how it happened. My first internal reaction was, of course, not a happy one. But when I asked him what happened, he said he knew he was going to get the wrong answer, so he looked in his folder to find the right ones. He said he was sorry, and he wouldn’t do it again. He was going to study his words and take the test again. After thinking about it, I remembered how you always seem to see the strengths instead of the weaknesses. Maybe this is a poor example, but I realized, that he 1. Recognized there was a problem, and 2. Tried to find a solution. All on his own. There was a time that he would have just sat there, not answering questions, seemingly not caring. Well, obviously now he cares. He didn’t want to fail his test. He made an effort. So while I won’t tell him that I’m proud of his cheating, I kinda secretly am a little. I did tell him, that I was proud of him for telling me the truth right away, and being able to explain what happened and why. (Also. Wow. Because that is also a big deal.)

    • I applaud you son for all the reasons you stated and guess what else, he acted like a neurotypical 11 y/o. When my daughter first started to whine and complain about things her therapist said, “Well, she’s caught up on this item now.” We both laughed. Congrats to your son and your family for keeping on task.

  3. I have a daughter very similar to Brooke (she is 14) and I am working from the end goal that she will be with me forever and have built an apartment in the lower level of my home for her to use one day as her independent space. If she never needs it that would be great but if she does it is my joy and privilege to be able to share my life with her in whatever capacity she needs. That is what I am here for – her. Most of the world has several generations living together – each taking care of one another – what a beautiful future.

  4. Pingback: love not fear – flashblog | Love Not Fear Flash Blog

  5. Jess, this is really wonderful. Both of your kids are lucky to have you. And those of us at the beginning of this journey are too…your blog is a daily narrative that helps me construct my own. Thank you.

  6. Jess, you haven’t had one leave the nest yet. When they do, you will realize what a gift it will be to have one stay. My eldest is in the Army and the year he was gone was bad. My greatest joy now is when all three of my kids are at home. I know where they are and that they are safe, so no worries for this mama.
    Little background: two boys 19 and 22, both in college now and a 9 yo Aspie girl who keeps me young.

  7. “She shows me again and again just how limited my imagination is, how frightfully narrow my perspective.” Lovely! This fits especially well with two particular children I know. Thank you!

  8. So moving, so beautifully written, so eloquent, and so true. It’s all in how we frame these things–in the words we use and the intonation in which we use them. And the darkness and the light are both always options.

    • i know you said some other stuff, and that it was as profound as always, but i got stuck at “beautifully written.”

      coming from you, i’m sort of, um, yeah .. i got nuthin.

      thank you, andrew. xo

  9. I loved the perspective you gave. I would not think you need to give up hope on her indepence quite yet from what I’ve read, but you seem prepared for whatever comes, with equanemity. Your model for parents of autistic kids could do amazing things for the autism community by some ripple effect. We all could use clarity of mind when we make decisions in the world of autism

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