success

20140410-084226[1]

{Image is a photo of my beautiful friend, Barb, co-author of one of my favorite books and generally one of my all-time favorite people. She is, by anyone’s definition, a success. She is non-speaking.}

Oh, friends. There’s something I have to say. I hope you’ll indulge me. Actually, please do indulge me. It’s important.

Yesterday, I asked you to believe. I asked you to have faith that anything is possible for you, for your children – to have faith IN you, IN your children.

I ask parents constantly not just to believe in your children’s potential but to know, really know, that right now, right at this very exact second, they are capable of far more than that to which the naked eye might attest.

I plead with you to believe that they are taking it all in, processing whatever “it” may be, in their own time and in their own way, storing it all away for later use.

I need you to believe that. They need you to believe that. To see that there is almost always far more than their limited ability to demonstrate (and our even more limited ability to discern) their comprehension would imply.

I’m using  too many words. I’m avoiding what I came here to say.

Yesterday, I reposted something that I’d written earlier this year about my friend whose daughter was light years from where Brooke was when we first met. Who now, winning awards for her academic performance in high school while Brooke still struggles with first grade texts, still is.

In the middle of the passage was the following …

I reveled in her victories, I just didn’t believe that they could ever be Brooke’s.

And you know what? They weren’t. They won’t be. Brooke’s victories will be her own. Yours will be your own and your child’s will be theirs.

I need to say that again. I need to make sure that you’re really hearing it. That I’m really, truly communicating that everyone’s journey is his or her own. That each of our victories, each of our children’s victories, will be uniquely ours, theirs.

Brooke’s acquisition of spoken language and her ever-growing ability to access and use words functionally has been life-altering. It has been, and continues to be, one of the greatest evolutions I’ve had the honor of witnessing. It is a stunning testament to all that is possible with hard work, dogged determination, and the indefatigable efforts of people who combine their expertise with love and faith and a tenacious belief in our children. It’s a testament to the fact that we as human beings never stop growing, changing, developing, acquiring and using new skills. It’s a testament to who Brooke is.

But here’s the thing I have to say. Here’s the thing that I desperately want to make sure that you hear, lest I give you any impression to the contrary.

Despite Newton’s First Law of Physics, there is no equal and opposite reaction to Brooke’s spoken language development. That is to say that had she not developed the ability to communicate verbally,there would be no absence of victory, and there sure as hell would not be failure. There would be a different path. Different victories. Different celebrations.

Later in the passage that I quoted yesterday was this …

If there’s one thing that this journey has taught me it’s that every individual progresses in their own way and on their timeline. I have no idea what you or your child might be doing in years to come. But neither can I, nor you, know what they are not — or will not –be capable of doing in the future.

I know my kid isn’t yours. And yours isn’t mine. But neither are they now who they will be in the future. None of us is.

Everyone’s successes will look different, but they will come. The only real limits on what’s possible are the ones we create, or at the very least, accept.

That matters. A lot. It matters to my friends whose voices come, as a reader so poignantly put it yesterday, not from their mouths but from their hearts. It matters to all of those for whom access to so-called functional communication is wired into a keyboard, rather than their pharynx or larynx or whatever the heck it might be that the human body typically uses to make sounds. It matters to those who think not in words but in feelings and memories and pictures and moments. It matters to those for whom the keys still lie just beyond the horizon, awaiting the innovation that will allow them to be heard.

It matters because while verbal expression undeniably makes life easier, it cannot be the yardstick by which we measure a life.

“I love hearing her thoughts,” that mother wrote yesterday. “I hate when people get so wrapped up in her using her ‘voice.’ I have to explain over and over [that] her voice is in her heart; who cares how it’s delivered?”

A friend recently asked me for my thoughts on Autism Cares, the legislation currently stumbling around the floor of Congress like a drunken sailor, escorted by those who have made a point of excluding not only autistic leadership, but even autistic consult from its creation. I told her that I find it troubling, among so many other things, that so frighteningly few of the research dollars in that bill are allocated to studying the efficacy of real-world supports and intervention. That so small a percentage of resources is used to support and promote technological innovation. That almost none of it is being used to make life better for autistic people now. To find ways to create and support meaningful job opportunities for those on the spectrum, no matter the level nor complexities of their needs, to create supported housing within the community, to study the long-term effects of various interventions from ABA to RDI to Floortime and everything in between. To study the intersections between autism and mental health and to figure out how to recognize, treat and ultimately prevent common overlapping conditions like depression, anxiety and suicidal ideation.

But you know what? It all starts with communication. The ability to communicate effectively changes the nature of everything on that list.

To be able to say that something hurts, that you’re hungry, that you need help. To be able say that you are happy or sad or scared or excited, that you can and want to work. To be able to say that you want to live with family, with friends, in an environment that will help ease your fear of whatever you might fear and give you the ability to do whatever you might love … to be able to “say” those things in whatever way you may be able “say” them, verbally or otherwise … and to be understood when you do, changes everything.

I am grateful beyond anything that I can convey that Brooke is finding her way to do that. And I will celebrate it here every chance I get. But so too, I will remind you (and myself) again and again that there are myriad ways to communicate. That none is more or less valid than any other,that  no human being is more or less worthy of being heard than any other … and that spoken language is just one among many versions of success.

16 thoughts on “success

  1. It took me what felt like a long time to be “okay” with my youngest daughter not speaking. I kept telling myself that it would be okay if she never spoke, but it took a while for me to actually believe it. (She is four and a half). But now, even though she struggles with the ipad, has no spoken expressive language and her ASL is limited to only one or two signs, somehow her communication is exploding. I don’t know how to properly express that, but because she is surrounded by people who support and accept her, she is blossoming in her own beautiful way. It’s not formal expressive language, but she is showing us. Speech is not the only language, and not the only way to define success for our kids. I hope someday to have the kinds of conversations you have now with Brooke. But for now, it is a gift just watching her experience things like the wind in the trees and the light dancing on the water.

    • This is basically a beautifully succinct version of all that I was trying to say with this rambling, bumbling post ..,

      “Speech is not the only language, and not the only way to define success for our kids.”

      Thank you.

  2. Jess, is there any way to ask permission of your friend to use her quote on the “Communication” page of the site I’m building? She totally nailed it.

    “I love hearing her thoughts,” that mother wrote yesterday. “I hate when people get so wrapped up in her using her ‘voice.’ I have to explain over and over [that] her voice is in her heart; who cares how it’s delivered?”

    That’s just lovely.

    • Patricia,

      Though I’d love to claim her as a friend, I don’t know her beyond her comments on Diary. If you go to Diary’s Facebok page, you’ll see her comment on yesterday morning’s post. (Her name is Theresa) You can reply to her there and ask her permisison. It’s brilliant, isn’t it?

      Hope that works,

      J

  3. Is there any possible way, you might share with me what all you’ve done for Brooke, as far as school, or therapy, that has helped be as successful as she is becoming? And what all you’ve done in your time together to help her? I just want to ensure I’m doing everything in my power to help my sweet angel. So many times I feel lost and helpless when trying to connect with her or find things I can get her interested in. the only thing that brings her happiness is movies, some outside play. It just makes me feel so helpless when all she wants to do is be lost in a movie, and he she becomes so aggravated with me when I even attempt to show her a toy or anything else, she just wants to have nothing to do with anything else. I just come to you for advice bc I can see how truly vested in this you are, and you live it every day. Thank you so much.

    • oh, gosh, how much time do you have? lol .. here’s the thing .. what we did with brooke may or may not be remotely relevant for your kiddo.

      That said, here’s a list of completely random stuff that I think we did right, among a whole lot of stuff that we didn’t.

      she had a lot of speech therapy .. a lot. A minimum of an hour a day for five days a week between school and private – sometimes more. the sessions were split between one to one slp and small group social pragmatics. They were always based around games and toys and fun.

      we worked a lot on questions .. modeling why / because and showing her how to use ‘what’ and ‘how’ to gather information. none of that was even remotely natural for her. She literally started using why in earnest just last year. How is still confusing.

      we joined her in her interests. today, (she’s 11), i sit with her on the couch and watch elmo and dora and kai lan, blue’s clues and yo gabba gabba because that’s what she wants to do. for years, she’d make it clear that i was not to talk during the shows. she’d, in her own way (at first with a hand over my mouth) admonish me not to answer dora’s questions and never, ever to sing along with joe when we figured out blue’s clues. So I was quiet. but i sat. once in a while, i’d point to something on screen or even venture a question about a show. sometimes she shared, sometimes she didn’t. but i sat with her and I watched. So when she scripted from the shows, i could usually tell where the script was from, and sometimes even peel it apart to figure out what she was trying to communicate through it. i found that often it wasn’t the words in the script that were relevant, but their context – i.e. what was dora FEELING when she said the line that brooke was reciting? i began in that way to understand what she was trying to tell me and she, encouraged and emboldened by being understood, invited me into the scripts with her.

      (for a brief time we followed the advice of those who told us to discourage scripting, but we finally listened to our gut and called bullshit. we dove in with her and it was and is the best thing we ever did. they opened up an avenue to interaction – to dialogue, and, ultimately, to conversation. i’d say 80% of our back and forth is still scripts, but 20%? pure brooke – novel, rich, imaginative.)

      we worked endlessly on identifying and labeling emotions – both her own and others. this was and remains a running theme in everything that we do. i believe that it forms the basis of self-advocacy and will never stop working with her to help her understand how she feels and to give her the tools to tell others.

      We encouraged her to say no and respected it whenever possible when she did.

      we’ve encouraged other methods of communication. she began writing by using Pixwriter, a picture to voice and text program that she used at school to “write” a sentence about her day. ultimately, the pictures fell away (beginning in third into fourth grade), replaced by typed words, first heavily supported and prompted, eventually almost entirely independent.

      We bought an upcycled ipad and loaded it with story telling apps to support the work she was doing with her therapists – toon tastic remains a favorite. We bought Social express (when it went on sale cause it’s like $100 when it’s not) so that she could play with it at home, just as she did in her social prags group at school.

      We begged the school to train us and to provide tools (social stories and visual prompts and picture schedules) to facilitate play dates and then we invited kids over. it was terrifying, but we did it again and again and again. we made them fun with the messy stuff she loves like shaving cream on the kitchen counter or baking cookies. we kept them short and sweet (an hour to 1.5 at the very most) in hopes of keeping them successful. we found that over time, the ones that seemed to be the most comfortable for her were the ones with other autistic kids. we fostered those friendships, against the initial VERY wrongheaded advice of early therapists, and they have flourished.

      we stopped panicking. we gave up on the soul-crushing goal of making every second a teachable moment. we stopped shoving everything into a lesson and started living. we laughed. we encouraged her knock knock jokes, no matter how many times she told them (still does, still expects a laugh). we encouraged anything that even smacked of interaction, regardless of its recognizability to anyone else.

      we gave her time to simply be when it was clear that interaction wasn’t welcome. we began to understand just how hard she works day in and day out and to respect her need for downtime at home. time to be and not be forced to perform. when we lost the tension, everything flowed more easily, including words.

      we stopped insisting on eye contact. we began to understand how destructive that insistence was. Oddly, when we stopped asking for it, she began offering it, as though the demand itself, or the urgency and intensity of our desire for it made her all the more uncomfortable giving it.

      we embraced her interests (New York for Godspell, Pennsylvania for Sesame Street!) and used (use) them as springboards to conversation, teaching, sharing, joint attention, everything.

      we started to see that she was taking it all in – everything. that she would eventually process it and give it back to us when she was ready. that everything we said and did was being recorded in that steel trap brain of hers. that our reactions to her and the way in which we handled our own insecurities about standing out really, really mattered.

      i’m trying to think of anything else i can offer. it’s all on the blog, if you go back and read past posts you’ll find every bit of our journey recorded, the good, the bad, the ugly – it’s all here.

      above all, i’d say that one of the most important pieces of advice i have is the one that i got from barb, the gorgeous lady in the photo up there whose lovely comment is just above yours. BE there with your kid. Be patient. Be steadfast. just BE. you’re kiddo will know you’re there. and if you watch long enough, i promise you’ll see that somehow, in some way, she’s inviting you in.

      i’m sorry this isn’t more coherent but i hope it helps nonetheless.

      j

      • OMG for this part “she’d make it clear that i was not to talk during the shows. she’d, in her own way (at first with a hand over my mouth) admonish me not to answer dora’s questions and never, ever to sing along with joe when we figured out blue’s clues.”

        That was (and sometimes still is) my son. I remind him to ASK me and not just be pushy about what he prefers 😉

      • There’s a lot of coherent, sound advice in this well-written comment. I don’t think it’s only relevant to Brooke. Every parent of an autistic child could take away something important from it.

        In my opinion as an autistic person and parent, one of the most important bits of advice is in the parentheses: discouraging “scripting” is indeed BS. It’s a valid autistic learning style.

        Autistic people often learn in the opposite way from neurologically typical (NT) people. NTs learn the parts of something, then learn to combine those parts into a whole. Autistics learn a whole, then learn to break it up into its parts.

        Scripting and echolalia are autistic-style language learning. Over the years those whole scripts and citations are broken up more and more until in the end they are just words. Some of us don’t quite get to that stage, but even scripts are still meaningful communication.

        I’ve personally seen this happen in the development of fantasy/imagination. One of my kids, also on the spectrum, used to recite entire Teletubbies episodes. Then gradually she started inserting herself into them as an extra character. Then she started influencing the storyline herself, and the stories became her own more and more. Then the TV characters became gradually less important. Within five years she had an elaborate fantasy world entirely her own, full of invented animals and magical powers. We never discouraged any of it and it’s given her great pleasure and comfort.

        I just wanted to highlight and elaborate that aspect of development and learning style. But really everything else you wrote is also important, including giving autistic kids the downtime they need and giving all of yourselves time to actually live.

        There is so much fear and desperation in autism parenting, promoted and egged on by certain prominent and rich organizations profiting from that fear, and it’s enormously damaging to parents and children alike – damaging first and foremost the ability to “just be” which is so important. Suzanne Wright of Autism $peaks actually claimed: “these families are not living”. Well, to put it bluntly: if you’re not living, you’re not doing it right.

  4. Jess – this is where we clearly have a common cause – all the money spent on FASD is aimed at prevention. Nothing is allocated to providing support and assistance to those already affected. Setting aside the impossibility of preventing ALL prenatal alcohol exposure so long as alcohol is legal, so long as women may become pregnant without having planned for conception, even if we could solve those minor (sarcasm) issues there are still approximately 2 million affected people in the USA right now. Every time I hear of a program for “support” upon research it turns out it is support for pregnant women to stop drinking – ie prevention. We need a way to turn the legislative conversation to respect and support for neuro cognitive difference – regardless of cause. What can I do to help? What can we all be doing?

    • Raisingour voices to those who make these decisions EVERY time they come up. writing to every member of congress, every senator, telling them why real time support matters and why it is not just the right thing to do, but the fiscally responsible thing to do. EVERY single time.

  5. I just stumbled in this one. I was looking for your data, Wanted to nominate you for this: http://www.lorealparisusa.com/women-of-worth/my-nominations

    but can’t as I don’t have your info. And wouldnt dream to ask for such personal info.

    So while swimming around the blog I accidentally click here with out even noticing.. because certain little boy was sitting over me just moving the mouse around ( a win as he wasn’t interested in computers and mouse a few days ago and now is all he wants to do.. :). ). anyway. This is something I REALLY needed to read today.

    Thanks Jess. THANKS!.

    And now to fix my facebook as I haven’t seen any status from you in ages.

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