possible

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Ed note: Apologies for the annoying little dots all over the page. WordPress decided this would be a good morning to go all sorts of wonky and I had to improvise. Yup, I’m kinda like the blogging MacGyver.  
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thank you all so very much for your warm, generous, loving response to today’s post. i winced as i hit publish this morning, fearing that it was too raw, but knowing too that i simply had to share it. once again, i am overwhelmed with gratitude for this sacred space and all that we accomplish together every day. thank you.
 
~ Diary of a Mom Facebook Status, 7 hours ago
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I wrote those words before (finally) turning in last night. When I woke up, there were even more incredible comments waiting in my inbox. I wish I had the words to tell you what it means. I don’t. But one of the best parts of this thing we’ve got going here, you and me is that I’m guessing you already know.
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Of the hundred some-odd responses, there are so many that I’d like to share with you. I’ve moved the Facebook comments onto the post so that if you’re so inclined, you can read them all yourself.
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Well, not all of them. You see, there were a couple of comments that you didn’t get to see. Yet.
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Many of you suggested yesterday that I send the post directly to Shannon at TPGA. I already had. In fact, I’d told her I was writing it the night before. I’d warned her that I’d gotten pretty emotional in describing my  failed attempt to get my little one to participate even with the VERY modified questions. I warned her that it had gotten messy. And then as soon as I hit publish yesterday morning, I sent it to her.
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She wrote back privately, then left a comment on the post.
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Thank you for writing this, Jess, and for making the conversation bigger than our site and series. We hope some of the posts coming up this weekend will speak to folks who want to see “their autism.” And if you don’t see it, and would like to participate, please email us at thinkingautism@gmail.com — we can get creative (as you’ll see), and certainly don’t mind posting more profiles than April has days.
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And then the conversation really began.
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Last night, I got an e-mail from Rachel Cohen-Rottenberg. You might know Rachel from her incredible blog, Journeys with Autism or the site she runs, Autism and Empathy. You might know her as a vocal and visible autistic self-advocate. You might know her as the author of the book The Uncharted Path or its sequel, Blazing My Trail: Living and Thriving with Autism. Heck, you might even know her from her insightful posts on Diary’s Facebook page.
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Or, you might just know her as one of the five new affiliate editors that TPGA welcomed at the end of March. It was in this latter role that Rachel reached out to me last night.
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She has generously agreed to allow me to share our conversation here. I think you’ll understand why I was compelled to ask her to do so.
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Hi Jess,
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I’m writing as a TPGA affiliate editor, wondering if there is some way that we might change the format of the Slice of Life questions so that Brooke can participate. I don’t feel comfortable with her being excluded; the answers she gave were fine, and I am happy to work with you on creating questions that work better for her so that she can participate. I’m thinking that because she speaks so much with her expressive face and the way she moves that drawings or photos could work very well. For instance, we could pose a question like “What do you look like/do when you’re very happy?” and have her choose a photo that best expresses that. I want to make this work for her, and I have the go-ahead from the other TPGA editors to help with that, so please let me know what I can do. 
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I’m not sure whether you saw my post to my blog today, but I couldn’t answer the questions either. They seemed really out of kilter with the way that I think about myself and my life, and if I have the time, I will rewrite them to be more reflective of my process. You should feel free to do the same for Brooke. 
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Blessings,
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Rachel
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Of course I wrote back immediately.
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Rachel,
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Thank you so much for reaching out. Shannon did as well (I’d sent her the blog post of course!) and I’m so grateful to both of you for wanting to make the process more accessible. 
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A very close adult friend on the spectrum had very similar suggestions today and I’m hopeful that I can find the time to get something together. 
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I’ll be in touch soon! 
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Again, THANK YOU for reaching out. It means the world. 
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xo, 
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Jess

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I’m so glad, Jess. It’s so important to me that we all be included!

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Cheers,

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Rachel

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Trying not to cry. It means so much, Rachel.

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Thank you – from the bottom of my heart.

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Go ahead and cry. You’ll feel better. At least, that’s what my husband always says.

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Brooke has a place here. This is the great thing about the autistic community that gets lost in all the self-advocate/parent battles: when we’re at our best, we work very hard to make sure that everyone is included. We’ve known loneliness and exclusion all our lives, and we try very hard to make sure that it doesn’t happen to anyone among us. We’re not perfect, but I’ve never been in another community that does it quite so well. It’s the first time in my life that I’ve ever felt a sense of belonging — which makes it that much easier to go out into the world at large with confidence and self-respect and realize that I belong there, too.

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oh how i adore everything you just wrote (except that it had to take so long to find that place) ..

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how’s this for a start? someone was in a PERFECT space at bedtime and was totally willing to play and let mama take a bunch of video ..

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(ed note: video omitted cause you’re just gonna have to wait.)

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Question – would you be comfortable (and please, NO guilt nor pressure if not!!!!!) allowing me to share this conversation on my blog? I feel like it’s such a beautiful example of how this CAN work – how our children DO have a place – how they are welcomed with open arms in whatever capacity THEY are able to make work, how much value there is in truly connecting with each other and seeing the immense value for ALL OF US in doing so – by God, it’s everything. I’d love to be able to show our world that it’s possible. Does that make sense? Please let me know.

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Hi Jess,

It’s completely fine with me if you want to share this conversation on your blog. With all the horror stories in the news lately, I think it’s crucial that we share positive examples of people working together to better one another’s lives.

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I love the video! If you want to keep putting something together, I can pass it on to Shannon when you’re done, or you can send it to her directly. I’m looking forward to seeing the final product.

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Love to you,

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Rachel

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I’m talking to you both simultaneously! Lol So she’s seen it too and we’ve even had a similar conversation about sharing it .

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Going to bed hopeful tonight lady.

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Much love,

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J

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At a time when the ‘autism wars’ make for catchy headlines and frustrations between parents and self-advocates seem to boil over with self-defeating regularity, this was possible.

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We stuck with each other through the messy. We stopped talking and listened. No one walked away. When I didn’t know how to include my girl, Rachel and Shannon reached out to help me find a way. And I can’t wait until you see the result. It’s my girl being exactly who she is, welcomed into a community who viscerally understands what it means to be different – by any degree. By people who respect her enough to meet her exactly where she is and tell her – and show her – that it’s perfect.

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So I went to bed hopeful. Hopeful that there really would be – IS – a place for my girl among mentors, peers and people who can come an awful lot closer to knowing what it means to live in her skin than I can. And hopeful too that the tenor of conversation between parents and self-advocates can change. That we can slow down, speak softly, listen, deconstruct our own messy, sticky tangles of emotion and evolve – together.

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The conversation above is proof positive that it IS possible.

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Thank you so much to Rachel and Shannon for reaching out to pull my girl in and for all that you both do each and every day.

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I am so grateful.

25 thoughts on “possible

  1. Sometimes you have to lay down the pushes to grow and the insistence to stretch and simply meet a person where she is here and now. That’s what I try to do with my church small group. 4 young women on the spectrum, all in different places. And the 4 of us, we spent so much of our lives reaching and stretching… so I try to make those couple hours a month about sitting comfortable with ourselves, wherever we are right now.

  2. Oh, Jess, this is all so beautiful. And yes, a shining example of the true meaning of the word “community.” I am so thrilled that as our children become adults there will be this wonderful and thriving community of autists to welcome them and help them and work together to change the world..

  3. I feel like all I ever say in response to your posts is “wow, LOVE this” but it’s hard to find words when you’ve already used the perfect ones. Wow! Hope abounds.

  4. so glad this worked out the way it did…and you guys are great examples, hopefully people can read this, come away with ideas on how to communicate difficult concepts, how to connect with one another on these complicated issues. anyway, you’re awesome.

  5. I needed this today. We all need things like this everyday. We are literally fighting battles every single day for our kiddos – big or small. It’s nice to know there are peoole out there that want to give us the tools to keep fighting! I love your blog. Thank you!

  6. I love the response. Yesterday, before I read this, I tried videoing my son with the questions, just to see what he would say. Just doing that made me realize that I don’t talk with him enough about autism. He was tired and very flappy and didn’t answer many (and I know that he could answer some of them if her were more focused). I appreciate your post yesterday and I appreciate TPGA very much as well, for putting forth those questions. I love this series during Autism Acceptance Month.

  7. I thought about my Big Boy’s answers to the questions all day yesterday. His would need modified, too, (not everyone understands Spiderman references). This opens up such a cool way for me to relate to Bigs and also to help him find ways to express himself and be TOTALLY accepted for them. Not shied away from, not laughed at. Thank you for sharing your conversation along with all else that you share with us every day. Your family and your words are an inspiration to me and mine!

  8. I can’t tell you how much I’ve loved reading ALL of this (and yesterday’s post and comments too). There are SO MANY times when I don’t feel comfortable contributing or commenting, mostly because I feel like James isn’t autistic “enough” (sounds so stupid writing it) that I don’t have any place to complain in the face of what so many others deal with on a daily basis. But you know? It’s OUR autism. And our struggles are real too. Thanks for making me feel like we are a part of something too…

    • So true Bobbi! I know just what you mean. I always try to be very aware of being sure to appreciate the struggles families and individuals with more severe autism have and while I cannot relate directly to their specific trials & triumphs, I can empathize and rejoice with them & help to further awareness & acceptance no matter where our loved ones are on the spectrum. As Jess so perfectly says, this is our autism & no one else’s.

  9. The only thing that ever makes sense is to say in response to just about everything you write is Thank You Jess. Thank you for having the words that are in my heart and for being able to express them…thank you for pressing on and not walking away from the table when things get messy…thank you for having the COURAGE to share all of this in such a personal way so that the entire community may benefit. because we are all in this together. together. t.o.g.e.t.h.e.r.
    God Bless!
    Kate N.

  10. Thank you for keeping this conversation transparent, Jess. The point of the Slice of Life series is inclusiveness — to showcase the age and ability diversity of the autism spectrum, and on that point We’re all looking forward to Brooke participating — she is a funny & delightful kid, and the world deserves a chance to get to know her and her autism better.

    But please know that I do not consider this matter or process in any way to be about the tenor of conversations between parents and self-advocates — this is about recognizing, showcasing, and accommodating all our autisms: one label, near infinite ways in which that label expresses itself.

    I personally remain deeply indebted to self-advocates, as I wrote yesterday:

    “I did not start out from a place of acceptance. As a disability community outsider and a fairly non-intuitive person, I lacked the context, experience, and insight to see past our society’s too-prevalent autism stereotypes of pity and parental burdens. I never knew anyone who identified as Autistic, never realized the full variation of the autistic experience, never considered that autism did not have to preclude Leo from living a full and happy life. Thankfully, the online and offline worlds are alight with autism acceptance trail blazers — autistics of course, professionals and parents too. They have not only shown me the way, but shown me incredible patience along the way (I’m not always the best listener). And I remain mindful that I still have much to learn about autism, and that much of that learning will come from Leo himself.

    A final note: Acceptance does not mean surrender — quite the opposite. I accept my son for who he is, *and* I am a human blunderbuss when it comes to demanding the supports Leo needs to be a successful, happy student and kid. I will continue to demand that society accept him and his spectrum-mates, as well.”

    http://autisticadvocacy.org/2012/04/all-done-autism-awareness/#.T4ZtuRIBzPk.facebook

    xo to you and your sweet B.

  11. Thank you, I can not say this enough. You make me feel normal or sane. I do not have a child with Autism but she does have Phelan McDermid Syndrome. Our struggles are not the same but our emotions and trials are similar. I laugh with you and cry with you everyday. Today is a day when I needed to hear she may have a syndrome but she is the only one like her. She lights up our world and god has a way of giving every person with special needs something extra to help them stand out. My little on is over the top social butterfly she does not knows a stranger and always has a hi and smile to brighten everyones day.

    But through all this rambling I just want to say thanks. Today is a rough day tears around every corner but tomorrow will be better and I am ok with that thanks to you being so raw and pointing out that it is ok to feel the way I feel. This is life there is no road map and there will be bumps but enjoy those bumps as they are the little moments that make it worth living.

    Tracy

  12. Love all of this. I especially love the feeling that there will always be a place for our kids with each other. And I cannot wait to see that video!

  13. Jess, thanks so much for our conversation and for this piece.

    I want to clarify that I raised the issue of the so-called rift between parents and self-advocates because I feel that the situation is very much overblown. When there is a big blow-up, it gets a lot of attention. But a lot of autistic people — including the people who sometimes find themselves in the public conflicts — are doing a great deal of work around inclusion every day, and the emphasis on the moments of conflict really distracts from that quiet work. It’s a shame, because that quiet work is where so much progress is happening and that’s why I’m so glad to have our interaction highlighted in your piece.

    I also want to mention that it’s not just the autistic community that is there to support autistic kids and adults; it’s also the larger disability community. I have been amazed by how much support I’ve been able to give and receive from other disabled people. It’s so important for parents to know that, whatever your children’s disabilities, there is a whole community of people with shared experiences and shared concerns. We are far from alone, even though in the able-bodied world, it often feels that way.

    Blessings,
    Rachel

  14. I think its amazing how you opened up your heart and shared your “guts” with everyone on how you felt and in doing so you brought forth change for your daughter and ultimately for others as well. There will always be a place for our kids because we will keep fighting to make it so…

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