i tried

dominoes

~

Just when I thought I was out, they pull me back in. ~ Michael Corleone

*

Note: What follows is drenched in sarcasm

*

So there I was yesterday, perfectly happy being miserable. Taking a day to indulge in a good wallow in the futility of it all, spoon poised above the bowl, ready as I was to drown my sorrows with my old friends Ben and Jerry.

And then a couple of readers had to come along and kill my perfectly good pity party with their pep talks. They had to go and remind me that we do here matters. That me telling my story and you telling yours has an effect far beyond Diary’s front door.

Damn them.

Of all the gin joints in all the towns in all the world, they had to come into mine and say this ..

Everyone is allowed to feel this way sometimes. Just wanted to let you know that despite the sea of crap surrounding this, your efforts ARE reaching others. I’m on my way to a doctorate in child psychology, and I read your blog faithfully. The kids and parents I work with don’t know it, but they owe you one. I owe you one. Understanding autism from the inside out helps me be a better clinician. I’m better able to talk to my families, better able to understand and support my kids. Not that I’m making an enormous impact anywhere, but I like to think that the small things still count for something.

Hope tomorrow is better.

– E

— and —

Jess – I have to echo what E said. From you, I have learned to look and listen in ways that hadn’t occurred to me previously. You’ve given me a better perspective on what my families deal with on a daily basis, and tools to be a more effective advocate.

What you say here has a ripple effect. Keep throwing those stones in the water!

~

Clearly, they weren’t playing fair.

So, despite my best efforts to believe that we are shouting into the wind in vain, these ladies convinced me otherwise. I tried. I suppose we all knew that my attempt at fatalism would be short-lived anyway.

So after a paltry one day’s reprieve, I’m back to my usual hopey changey blogging. Back to ‘Our stories matter’. Back to ‘Changing the world one heart, one mind at a time.’ Which, I must admit, is a much, more comfortable place for me to be.

So here it is …

With all the talk about capital A Awareness this month, and all of the derision aimed at efforts to raise it, a couple of things have stood out for me. Firstly, I’m going to go out on a limb and say that I don’t think that most folks – even those who most vocally object to it – actually have a problem with the concept of raising awareness in and of itself. Correct me if I’m wrong (seriously, please do), but from what I can gather, the real trouble is with what ‘Autism Awareness’ has come to represent — trademarked puzzle pieces, light bulbs, numbers, statistics. Marketing and fundraising campaigns riddled with words like disease, tsunami, burden, liability, prevention. A focus on parents, caregivers, siblings. Everywhere except where it needs to be.

And even though we can all agree (please tell me that we can all agree) that FAR (FAR, FAR) more resources and support and services are DESPERATELY needed RIGHTTHISVERYSECOND, it’s not hard to see why some folks take exception to these popular methods of raising ‘awareness’ in order to get them.

To my mind, awareness — the kind with a little ‘a’ – the concept, not the brand — is something else entirely. Raising awareness is the sharing of stories. Nascent awareness is finding out that autism means very different things to different people – that it is experienced in vastly different ways. That it is viewed differently. That it is a word that describes a certain set of common traits but that does not – cannot – serve to define a life.

Becoming aware is getting to know PEOPLE and beginning to understand their experience.

In my experience, that kind of awareness starts a domino effect, leaning into acceptance, nudging action.

Ever since the media haphazardly (and inaccurately) suggested that Adam Lanza’s Asperger’s somehow contributed to his monstrous act, there has been a significant uptick in efforts to show that autistic people are, well, ya know, people. One doesn’t have to search far to find photographs of autistic people sporting captions along the lines of “This is Joey. This is autism.”

I applaud and am grateful for each and every one of those efforts to personalize autism in the public realm, and I was thrilled when I was asked to participate in one of them by sharing a photo of Brooke. But when I started to type on it, ‘This is Brooke. This is autism.” I paused. I just couldn’t do it.

While I understand the purpose of writing it that way (and don’t take issue with anyone who does!) it just didn’t sit right for me. This is Brooke, yes. And she is delicious and fabulous and loved beyond measure. But IS she autism? Well, no.

So when I sent the photo to Autism Shines, it looked like this …

~

230288_10151171211546937_1312881740_n

*

She has a laugh that could fuel a thousand suns

she is love personified

she is joy

she is light

she is autistic

*

Just as there is no one autism, there is no one person who can represent it. And even if there were — even if there were someone out there whose experience somehow miraculously summed it all up, they still would not BE autism. They would be a human being. A human being with thoughts and feelings and a beautiful, rich, complex – and yes, different, kind of mind. A human being with skills and talents and preferences and opinions. A human being in need of accommodation, help, and support, yet fully deserving of all of the respect and dignity, all of the rights and responsibilities, all of the assumptions of competence and potential and worth that would be afforded to any other human being.

A human being like Brooke.

Who catches and reflects light like a prism. Who lives BIG and loves hard. Who laughs (and cries) with every part of her being. Who crawls into hearts and changes everyone she touches for the better. Who loves without reservation and who is more authentically herself than any other human being I’ve ever encountered.

This is my girl.

Her name is Brooke.

She is autistic.

And this April, as every other month of every year, I would like to make the world aware that she and others like her are very much worth getting to know. Because, for me, it all starts there.

*

IMG_0669

.

Thank you, Jill and E. Damn you both. 🙂

28 thoughts on “i tried

  1. Love it.
    Now when I meet a professional or someone that should know better or even someone passing comment. I look at them and say “is your child worth it? So why is mine not worth the effort? He is worth the effort. Every little bit of effort is worth it! That’s the core of it really.

  2. Channel your anger, sadness and pity into something positive for your self. Another words continue to take care of yourself and don’t go for your friends Ben and Jerry:) Please. Pretty please, with a treamill on top of it……

  3. You’ve pulled me out of more pity parties than you could possibly know!! I’m glad Jill and E. we’re on hand to pull you back! We need you, we all need each other…. Even if its just to say “I get it, I’m here”…. Thanks again for the beautiful way you do that everyday!!

  4. Oh, Jess. There you go again saying what I can not put words to. Thank you for speaking quite a bit of what my heart wants to say. hugs

  5. I’m not fully awake enough yet to say something as deep and meaningful as I’d like to. But those ladies are right. And if we have to change perspectives one person at a time, then so be it.

    • OMG!!

      I read it and LOVED it. And sat in my car in a parking lot before a meeting trying to comment so that I could tell you that but friggin WordPress kept kicking me out and I nearly threw my damned phone out the window.

      But here you are. And now I can tell you —

      I LOVED it. I truly, deeply loved it.

      xo

    • I have another beautiful blog to follow! About beautiful Happy Maggie!! Cause I have a beautiful Happy Ainsley! : ) It’s funny I was talking to one school district psychologist regarding the 3 year reval of my girl. She asked me what I most loved about her. The answer was simple ” That she is happy”! The words that you and Jess write about your girls could be written about mine! Thank you, Deanna! I’m glad to know about your happy Maggie! And always Jess, another big thanks to you for the words that mean so much!! Melissa

  6. Hey hey there is nothing wrong with visiting Ben and Jerry every once in a while, especially now that they have those nifty hoodsie sized single servings. Yes, the pint sized can be single serving, but that gets too dangerous.

  7. When someone asks me about recommended reading regarding autism or for a parent who’s child just received her diagnosis, it’s always a quick response: Jess Wilson! You’ve helped me challenge what I thought about autism and how I view my son. I’m a stubborn Vermonter so that’s hard to do! Thank you for what you do. Truly, thank you.

  8. Totally agree with you. Autism Awareness has become a victim of it’s own particular form of market branding. Loving your child with Autism is first and foremost simply loving your child. Autism is only an aspect of your child’s life. Personally I love my son’s honesty, his enthusiasm and delight in the things he enjoys and his ability to move past distractions into a space of pure focused energy. But far more than any of this, I love my son simply because he is my son. He loves others with out the need to quantify why he does so. This to me is the very essence of unconditional love and he has it in abundance. What more could a mother want?

  9. well put, as always.

    to be honest, i get tired of all the people who complain about the various organizations and their symbols, brands, etc.

    any constructive effort is good, helpful. we can raise awareness in more ways than one, simutaneously.

    we can raise “big A” awareness (the massive, symbol-laden efforts) and “little A” awareness (the personal stories and sharing) at the same time, they are not mutually exclusive. and i think the people who try to shout down the bigger efforts are just putting too many limitations on what we can say, can’t say. it all needs to happen, all at once.

    that’s what i like about your writing, it transcends the different types of awareness-raising efforts, your stories, images, they become something special. i know it’s touching a lot of hearts.

  10. We lit the house blue this year for the first time. For me, this year, it’s about raising awareness among the people in our immediate vicinity. It’s about letting my neighbors know it’s OK to ask us about it. It’s about letting our families know it’s OK to use the “A” word. We got a diagnosis at 2, but were told “we’re not sure, it might be, it might not be.” Now, a little over 3 years later, we have a better idea of what we are dealing with and have a different focus. We want those we know, and even some we don’t, to understand our boy so that he has an easier time navigating in the world. Thanks always for sharing your story because it makes it so much easier for us to share ours.

  11. I just want to say thank you for all you do. Before I found you, I was surrounded by people who wanted to “fix” my kids, and when you feel pressure to “cure” something that is considered so, so wrong, you stop viewing your children in the same way. I didn’t want to be unhappy with my life, with my circumstances, with my children. I still wanted to celebrate them, even though they needed extra help, and I didn’t know how. When I found you, everything made sense. I didn’t feel alone. I didn’t feel like my kids were a burden to society, or that I had done something wrong. I felt like it was okay to change my thinking, to meet my children where they are and work from there rather than fighting them to become what everyone else thinks they need to be. I am so much happier now. They are happier now. And I love that I can someday introduce my kids to Brooke and Katie and their experiences. I love that they can look at Brooke and say “I’m like her!” and be proud. I love that you have introduced me to autistic bloggers that my kids can look up to and learn from and draw inspiration from. So thank you. In what can be a very difficult, trying month, I am so, so thankful to have your words to lean on as I continue to love and nurture my children.

  12. Jess, this past week has been “HELL”. Daddy is gone for 5 weeks (for work). Pre-school is out for spring break. 10 month old baby is really sick. On..and..on…I could go. My Goosey(4 1/2) has been having one meltdown after the other. I feel like “I CAN’T DO THIS”. I pour through your blog like it’s the bible. At the sake of sounding a little “stalkish” I can’t stop reading or following on your every word. You are all I’ve got right now. We just started on this journey. Getting the help needed is a slow process. But, you have been where I am right now. Your words slowly move me forward. I comb through your blog for ideas on how to get through. Sure there is the advocacy part of it. I hope to get there one day. Right now at least for this one mama and one little girl, your words are all we got. So keep on keeping on. Please. Thank you for the bottom of my heart for the sacrifice in sanity you make sometimes in order to get those words out.
    Ruth

  13. Hahaha! Always nice to get a good “damn you!” once in a while- means you’re on the right path. 🙂 Really though. I think you’re RIGHT on with the distinction between Awareness and awareness. Real awareness isn’t knowing statistics and numbers and slapping a puzzle piece bumper sticker on your car. True awareness, to me, is the person who reaches out and quietly shares their own personal, individual truth with others. To understand (or at least to try to understand) of what life is like for someone else, what they struggle for, what their triumphs are… that’s what I think we should be working for. Unfortunately that awareness takes a lot more effort than wearing blue for a day.

    Hope that made sense- it’s been a long day. In any case, thanks for continuing to reach out and share, despite the frustrations. It isn’t for nothing.

    -E

    P.S. I hope I didn’t actually keep you from your Ben & Jerry’s!! I’m a grad student, woman. That’s practically a food group for me.

  14. You have such a way of touching our lives. You have no idea how sharing your family’s life shines hope in ours. My son Sidney is 3 years old and was diagnosed last year. I’m new in this journey. There have been ups and downs. I’m so happy to have found you and your friends to share this roller coaster ride with. Thank you from the bottom of my heart…

  15. I stumbled upon your blog when I was looking for an image on dominoes, and wow am I glad I did…what a beautiful picture, what a beautiful post, thank you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s