the star

 

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“When the day of the nativity was passed, the Star ascended up into the firmament, and it had right many long streaks and beams, more burning and brighter than a brand of fire; and as an eagle flying and beating the air with his wings, right so the streaks and beams of the Star stirred about.” And we are told that the three wise men, named Melchior, Balthazar, and Gaspar, are the kings of “Ind, Chaldea, and Persia.” They only meet on the outskirts of Jerusalem having traveled from their own lands “in great haste” and without stopping. And so they reach Bethlehem and present their gifts.

~ Adapted from Historia Trium Regum

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In 2008, this is what I wrote on Christmas day:

They met in the desert and continued on their journey together – From far away lands, they spoke different languages, had different customs, carried different gifts. But they shared one thing – an unshakable belief that a child would change the world.

To all of the incredibly wise men and women that I have met since this journey began –

I cherish our new-found friendship. I have learned so much from each and every one of you. I have been carried to new heights by your love, your support, your understanding. These have been the greatest of gifts.

My heart is full. Not just with the joys of the season, but with the knowledge that we will continue on our journey together.

The words hold, but their meaning is different now. In 2008, I thought that it was us – the mothers, the fathers, the siblings, the ones who love our autistic children and sisters and brothers – I thought it was us who would lead the world to understanding. Who would tell the story of autism and reveal the truth. I hadn’t yet seen the star that would guide me – that would take me on a long and winding journey right back to my child – to all of our children.

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Last week, my copy of Loud Hands – autistic people speaking arrived in my mailbox.

In truth, I bought it mostly for Brooke. I wanted her to have it someday, when she is ready. I wanted her to know that there is a community that awaits her with open arms, a community of strength and love and support and down-to-the-marrow understanding of her experience.

Over the weekend, I began to read the book. I got no farther than Julia Bascom’s foreword before I couldn’t breathe.

When we first started exploring the concept that would grow into The Loud Hands Project, we knew a few basic things. We knew that the autistic community is comprised of terrifyingly brave and resilient people; that the autistic community has many things to say and is perfectly capable of saying them in our own ways with our own voices; and that there is something beautiful and powerful about a community of people who are routinely silenced, abused, neglected and murdered, yet who continue to survive, finding and nurturing one another and growing in strength and purpose, year after year. We knew that there was a need to honor this collective and individual strength, beauty and voice, and project it out further into the world to reach those who didn’t yet know that other people like them existed, and tell them that they were fine.

I quickly realized that I’d need to order a second copy for Brooke. This one was – needed to be – mine.

As parents (no matter what flavor), we have a sacred responsibility to our children. We are charged with arming them for the world they will face. With filling them to the brim with love and self-confidence and the tools to be good people in a not always so good world.

But when our children are autistic, that responsibility takes on a whole other life. How? How do we give our children the message that while we want to help mitigate their challenges, allow them to communicate with a world that nearly always refuses to meet them halfway – a world that consistently dismisses their voice in a conversation ABOUT THEM – how do we make sure that they know that while they may be in need of help and patience and accommodation, that for the love of God they are WHOLE and PERFECT and HUMAN and CAPABLE and TALENTED and LOVED and LOVING and worthy of RESPECT? I know, that was barely English. I don’t care. Because, well, HOW?

We have to figure it out. There’s no choice. We have to because this, as Julia makes so painfully clear, is the truth …

One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging, and inaccurate things about ourselves, and that makes it harder to know who we really are or what we can and cannot do.

If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to.

This is the truth that we are fighting when raising our beautiful autistic children. The internalization of the message that they are not whole  – that their wiring and their experiences and their feelings and their thoughts and their very humanity are somehow less than. Less than what? Less than they could be? Less than ours? Less than what? But isn’t that the message? That they are LESS?

My fellow travelers, we’ve found our star. Our guide. And it starts with this …

We are complete, complex human beings leading rich and meaningful existences and deserving dignity, respect, human rights, and the primary voice in the conversation about us.

I’m going to be blunt. I know that many of you will dismiss these voices for one reason – the same one that I did early on. The one that I recently heard crassly articulated thusly: “If they can write their thoughts, then they can’t know my child’s experience. If they can communicate in such a way – any way – so as to make themselves understood, they might as well be telling me what’s it’s like to have a paper cut while my kid is a double amputee. It’s not the same.”

The voices in this book are spectacularly diverse. Some of the writers speak orally; some do not. Some could, if they so desired, pass as neurotypical; for some, that is an outrageous impossibility. They are as different from one another in gender, ethnicity, perspective and ability as .. well, as you and I are from each other. They occupy vastly different spaces on the spectrum. And they each have something different to say — Gifts to bring — To our children. And to us.

The star that will guide us- it is the autistic community. It is their voices, their perspectives, their experiences. Above all it is their humanity, in all of its brilliantly full dimension reminding us of our children’s. It is right many long streaks and beams, more burning and brighter than a brand of fire; and as an eagle flying and beating the air with his wings, right so the streaks and beams of the Star stirred about guiding us as we guide our babies, helping them to build that impenetrable wall of self-esteem that will carry them through the storms.

This is what I wrote to Julia yesterday,

I can’t tell you how grateful I am for this book — for all of the work that went into it and for all of the perspectives shared within it. I am incapable of expressing how much it means, as the mother of an autistic child, to have so many voices guiding me along the path as I do everything I can to raise her into a proud, confident adult who knows and loves exactly who she is. And for her — the gift of knowing that this community – this brilliant, vibrant, loving community awaits her — well, that’s everything.

This book is long overdue.

And it came at just the right time.

Merry Christmas, my friends.

 

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To order the book, click HERE.

Excerpts used with permission. Thanks, Julia and Ari! 

18 thoughts on “the star

    • Dear Jess’s mom,

      Thank you for writing on Jess’s blog every day. Her blog is beyond price, but it’s a wonderful thing to know she has parents–and that Brooke and Katie have grandparents–behind her, cheering her, supporting this great work. I read DOAM first thing almost every morning, and I’m sure I’m not alone among the thousands of readers who look for your comments!

      Karin

  1. “Who knows that you have been called for such a time as this?”

    Thankful beyond words for the Loud Hands Anthology, and for all Autistic self advocates who are radically changing the future for all Autistics for the better. We are in their debt.

    Deep gratitude and blessings to all at Christmastime. Much love to you and your beautiful family Jess, wishing you peace and strength in the new year!

  2. I must admit, for a really long time, I held a lot of anger. I felt the same…how can someone speak for my daughter? How could they have, for example, made it to adulthood undiagnosed, and be anything like her? How can they discredit how I, as a parent, feel? It has taken me a long time to work through, and past, that. Sometimes, during our more trying times, I still struggle…

    But, as K has gotten older, I’ve seen what it’s done to her…trying to be fit into a neurotypical mold. And, we are dealing with the fallout. Sometimes, even within the autism community, she is forced to fit into a mold of what people expect from one with Autism, and then she literally has nowhere she feels OK. I have worked so hard trying to make things easier for her, but sometimes there seems to be no place of acceptance…and it kills me.

    And that’s what has made things change for me. How she feels about herself, her life, is because those around her don’t celebrate who she is, or what she does. The focus is always on the deficits. Even when she’s with those who should understand.

    So, I get it now. No, adult on the spectrum will ever be exactly like my daughter, but it’s still a square peg/round hole situation for them all. The treatment is the same. The feelings the same. Regardless of severity of symptoms.

    Reading the excerpts made me cry, bc I can SEE it now in my daughter, and it’s NOT OK.

    Thanks for the book recommendation…I think it would make a great gift for people in our lives, too.

  3. Jessica, it is someone like you that leads the way. You show us different ways to be better as parents and a human beings. you are my child but more often than not I am led by you rather than the other way around. I must say it takes a great deal of pressure off of me as you lead now much better than I do.
    Autism is fortunate to have your voice to help find its voice.
    Merry Christmas to you and yours and all your readers.
    Love you,
    Dad

    • Dear Jess’s dad,

      Thank you for your wonderful comments on Jess’s blog. It’s a wonderful gift to read that you and Jess’s mom support both your incredible daughter and her family, but also her work. I know you’re bursting with pride– that pride bursts off the page in such a lovely way!

      Karin

  4. I don’t tend to read the blogs of parents with autistic children for the very reason you mentioned – as an adult on the spectrum who was only diagnosed as an adult, my voice is often invalidated by those parents. I have ever had parents come into my blog and tell me why I shouldn’t speak. But I do read your blog, and a big reason is that I really appreciate seeing a parent value the voices of people on the spectrum, and who actually follows through. (for instance, I also loved your posts about how you included your daughter in her IEP meeting)

    Because when people say “those who can speak, shouldn’t” they are essentially saying “I don’t want to include autistic voices.”

    • Please don’t let those voices stop you from raising yours. We need your perspective. And more importantly, so do our children.

      Thank you — and, if you celebrate it, Merry Christmas!

  5. I alway wonder how much my daughter knows about her autism. She understands that’s she ” different” but different to whom . To me she has always been herself. I have always struggled with do I tell her that she is ? And if I do will she use that as a crutch to get out of things? ( my daughter is very high functioning) or do I just let her do her own thing and guide her the best I can ? If I don’t tell her will I be taking the opportunity always from her to better understand herself? After reading your post I still don’t have the answers but I will be looking for tis book ! Hopefully it will help me to see from her side of the fence what would really help her.

  6. Under our tree this year, along with Landon Bryce, _I Love Being My Own Autistic Self_!

    What a beautiful post, and such an apt metaphor. Thank you, Julia Bascom, ASAN, and the wide and diverse community of autistic adults out there for being models for my son and for educating me. And thank you Jess, for being a model for parents and allies–helping us, with all the intensity of our love and best intentions, to be where we can and where we should. More than one pole star in this post for me!

    Karin

  7. Dear Jess,

    I am writing to you from the other side of the Atlantic. Since english is not my native language I ask you to forgive me the mistakes. I usually read your blog almost every day. And I love it every day. I think you have a gift, better you have a lot of gifts begining with two wonderful daughters 🙂 But I meant the way you put things into words it is super. I have been wanting to tell you about a little something (if I dare…) because I think it is a detail that can make a diference. I don´t think it is fair to say “autistic child” or person. I think we should say a person with autism or in the autism spectrum. I think a person is more than just a condition. A condition doesn´t define a person… perhaps one day you have it and may be one day you don´t 🙂 I hope you forgive
    my boldness.
    Lots of love.
    Monica

      • Hello Jess,

        OH I guess I missed that one:) I understand… Of course it make sense but I am not THERE yet! I think the “good” autism is really traces of personality (so its not autism) and the “bad” autism is like flu… most get rid of it ;)… And we will! I have seen it!
        Thanks for your time and I wish you a lovely 2013 🙂
        Monica

  8. Monica, autism is a life-long condition. No one “gets rid of it.” And yes, what you refer to as “good” autism (by which I assume you mean Asperger’s) is, in fact, autism.

    • Hello Rachel, don´t get me wrong. When I say “good” autism is like: pure of heart, peculiar sense of humor, great memory… “bad” autism is like seizures, anxiety, outbursts (you must agree it would be great if we could get rid of them, right?!). Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, cientific review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis. If one day it would be possible to improve what needs to be improved then good. Just that.

      • Monica, I understand. I still think it’s really important not to lump it all together though. Seizures are sometimes co-morbid with autism (approximately 25% by teen years is the stat I’ve seen from the epilepsy foundation), but they are not actually part of autism. So when you say that seizures are a downside of autism, it’s factually incorrect.

        As far as the tough parts – outbursts etc, of course we want to help our kids communicate safely and effectively so as to avoid meltdowns as much as possible. Of course we want to mitigate their challenges in every way possible, but that is not the same as making their wiring different than it is.

        As far as “falling off the spectrum”, so to speak, I’d submit that some of that is due to diagnoses that happen too early for certainty – no matter how much conviction the experts would like us to believe that they have, there’s still a lot of guesswork in diagnosing autism. It’s based solely on observation, which leaves a lot of room for error.

        I think the most dangerous part of demonizing autism – or of hoping to make it go away or allowing it to be only negative – is the effect that that kind of attitude has on our kids as they grow into adults. If you read Julia’s quotes above, you can see what internalizing that kind of thinking does to the human beings beneath the labels. It’s incredibly damaging to their self-esteem.

        I wish you all the best no matter how you approach this. But I do hope you’ll consider it from all sides.

        Warmly,

        Jess

  9. My approach is to love my son with all my being. My approach is giving him every tool for him to grow a happy person. And he is 🙂
    That is the only approach.
    Wish you all the best.

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