success

Bits and pieces of disorganized thought swirl through the air. If I’m not careful, they land on my skin, burning, then numbing, then burrowing like shrapnel, just deep enough to pretend that ignoring their existence can work, just deep enough that it can’t.

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Middle school. My baby girl is off to middle school in three weeks. It’s times like these I wish I believed – really, truly, fervently believed, that without a doubt, if I offered up my fear Someone would be there to take it.

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Robin Williams’ death hit me hard last night. When you have a disease of the mind whose defining feature is the ability to convince you that you don’t have a disease, life is a whole different kind of Hard. It was always so clear that his torment and his humor were two sides of the same coin. Beauty and pain may seem unlikely companions, but while we are conditioned to believe in the concept of mutual exclusivity, nothing exists without everything else, even its opposite. There is pain in beauty and beauty in pain. There is even laughter.

This is what I posted last night …

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“A whole human life is just a heartbeat here in Heaven. Then we’ll all be together forever.” – Chris (Robin Williams) in What Dreams May Come

Remembering a beautiful soul tonight. A man who made us laugh and cry and think. Who made our world funnier, more vibrant … more.

May he rest in peace, and may his family feel the love of so many who grieve with them tonight.

{image is a photo of Robin Williams as Chris cavorting in the beauty of Heaven in What Dreams May Come}

If you or a loved one need help, please, please call the National Suicide Prevention Lifeline at 1-800-273-8255. No matter how big it feels, you can get through it. I promise.

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A post sits in my draft box, where I’ve decided it should, at least in its totality, stay. But the words gnaw at me, convinced they matter, begging for release. This apparent topic change — isn’t.

As for the process of reinforcing the behavior – I think we need to be very, very clear about the difference between behavior and inner experience. The behavior here is “asking for reassurance” and the worry itself is the inner experience. Extinguishing the behavior (the asking for reassurance) does nothing to extinguish the underlying fear that caused it.

This is precisely my issue with this particular kind of behavioral approach (and I don’t mean ABA as a whole, I mean ABA practiced this way). Often (not always, but often) it veers into this territory – where the behavior (outer expression) is all that matters and we think that once the behavior is gone, the reason / motivation for it must have magically disappeared with it.

This approach completely ignores the reality of the child’s inner life.

Now, perhaps there’s a better way for her to express what she’s feeling or to get the reassurance that she needs without having to ask for it during class. I have NO problem whatsoever in using a behavioral approach to help her find and use that better method of communicating her needs.

But extinguishing the behavior isn’t doing that. It is pretending that if we simply teach her to stop asking for reassurance that we’ve taught her to stop needing it. And we haven’t. By ignoring her until she’s “extinguished the behavior” without giving her an alternative method of communication, what we’ve taught her is that we don’t really care how she feels – just how she acts.

There are so many more words – about the nature of anxiety and perseveration and the need to be heard. About the fact that we can train our children to appear successful and in so doing fail them dramatically. Words like these ..

I can teach Brooke to stop asking about the firemen by routinely and consistently ignoring her when she does. I can condition her to stop scripting during class by refusing to engage her in a script until a certain time. But neither of those things stops her from worrying about whether or not they’ll come, or making associations to scripts that she feels compelled to think through to their end and for which she will continue to, in one way or the other, seek closure. So while she appears to be successful because by no longer asking about the firemen or attempting to engage us in the script she is giving the outward appearance of no longer being worried about them and no longer perseverating on Max, I can assure you, neither of those two things have occurred.

While we might have seen with our own eyes this incredible success story, here’s the real story.

Brooke is coming home at night and tearing at her skin, pulling her clothing threadbare and bursting into tears at seemingly random times because anxiety doesn’t go away when we stop expressing it in one particular way. She is still sitting in class wondering what is expected of her and trying desperately to parse the words that are falling on top of one another in messy, chaotic piles and trying, trying, trying to catch up and getting frustrated and angry and feeling like she “must just be stupid” because her brain doesn’t shut off the script because we refuse to engage it.

The outward appearance of success is based on a neurotypical model of behavior and has absolutely no bearing whatsoever on the inner well-being (or inner havoc) of the child. 

When we measure success solely by outward appearance, and we judge that outward appearance based upon an NT model of what behavior means, I believe we’re way off the mark. And as the mama who holds her girl as she tears at her skin and pulls at her clothing and cries before bed, I’m sticking to my guns. Her long-term emotional well-being means a lot more to me than any short-term NT version of success.

I didn’t — I don’t — want to put the words here today because I don’t have the energy to debate their veracity or to argue the finer points of behavioral intervention. I just don’t. But like toothpaste in a seemingly empty tube, there’s always something in there. I’ll find it for my girl. Because the words are right. They matter. Success isn’t always what it seems.

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In the meantime, life marches on outside of the swirling thoughts and the burning shrapnel and the unanswerable questions and joy and remembrance and grief.

Brooke continues to prepare for my surprise party tomorrow. The one about which she’s told me every detail. The one for which I took her shopping yesterday when I posted this ..

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Brooke needed a ride to the party store. To get the supplies for the birthday party that she is throwing for me on Wednesday. Which is a surprise. And I’m paying for all of it. But shh, Don’t tell me.

{image is a photo of Brooke walking down an aisle at the party supply store carrying the piñata that she chose for my surprise party, which is shaped like a giant cupcake (I mean, what else would it be?). Apparently, the party theme is Hello Kitty, in case you were wondering. So she picked out Hello Kitty plates and cups. She also chose four gifts from the toy aisle and put them in a bag and told me that I was (allowed to buy them but) not allowed to look at them.}

I’m pretty sure this is going to be the best birthday party I’ve ever had.

Last night she filled the pinata. And asked me for help putting together the box which she then filled with my gifts. And then she arranged the guests.

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{Image is my kitchen table (actually the fake wood pad on top of the table that is supposed to be covered by a tablecloth but whatever) upon which sits a LOOOOOOONG line of figurines (my party guests) along with the box containing my mystery gifts, a hand drawn card, a pile of ribbons (I’m told they’re confetti), the pinata, which she spent last night filling with foraged goods from around the house, a Dora bucket, presumably to hold the pinata loot, Hello Kitty napkins, plates and birthday hats, two glittery “4” candles along with a package of regular candles, and a script of the birthday song that she’s written for everyone to sing. I reiterate, this is going to be the best surprise birthday party ever.}

And we did this …

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{Image is Katie and Brooke holding Bunny, the bunny they made at Build-A-Bear yesterday for their as-yet-unborn cousin, whom Brooke has decided will be named Deedles. (Not the bunny, the baby. I don’t think my sister is going for it, but Brooke is undeterred.}

We went to Build-A-Bear to thank them for listening to and supporting the autistic people who asked them to end their partnership with Autism Speaks. Given that if we get one more stuffed animal in our house the folks from Hoarders are bound to show up at our door, we made a bunny for my niece, who is due in early 2015.

Lastly, Katie gave me her Christmas list last night. In August, as you do.

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{image is a photo of Katie’s Christmas list. On top of the page it says, “Christmas List,” cause she’s brilliant like that. Underneath that header is one word, written sixteen times. That word is “Books.” Clearly she knows what she wants.}

Yes, life goes on.

With a stark reminder today to delve beneath the surface with those we love.

To prize and honor not outward success but inner well-being.

To know that this isn’t where our stories end, but where they go on.

No matter what people tell you, words and ideas can change the world.

Robin Williams

1951-2014

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13 thoughts on “success

  1. This post has so many facets that are both individual and intertwined.
    Robin Williams death is heart breaking. I can’t stop thinking about his incredible genius. I am quite convinced that Brooke will never lose her sense of self. She so enjoys being Brooke even with all of her trials and tribulations. You, Luau and Katie and all of Brooke’s community have certainly blessed her with that.

    Have an incredible birthday party tomorrow. I’m sorry we won’t be there. I love the bear but I’m quite certain it won’t be for any baby named Deedles. Yes, Katie you will receive many books. We got the memo.

    Love you,
    Mom

  2. A few years ago, I was diagnosed with PTSD. Then shortly after, generalized anxiety disorder, and shortly after that, with depression. I was 19 at the time; and all these diagnoses were so very real and so very scary. It’s a hard struggle; when an illness can’t be “seen.” It has taken me this long, (I’m 23 now) to even begin to cope with the latter diagnoses. And to learn how to cope with each thing itself; while trying to accept that they are what make me “me” – and I don’t want to think there’s anything wrong with who I am, or how I am… But the facts are the facts: these illnesses can potentially become very harmful. They have been harmful. But I have learned how to love myself for all of me, and a large part of that has something to do with this blog. It’s been a long, long road; accepting what is, what isn’t, how and why…

    The way you fight for Brooke, and don’t ever let anything make that fight less important, is such a beautiful thing to witness…to read about. It has been a reminder that I have to fight for myself, and those like myself. When an illness can’t be “seen” – it is often misunderstood; misinterpreted; or thought that maybe it isn’t “real.” I know that for the rest of my life, I will fight for the education on “unseen illnesses.” And making sure people understand that when a person is suffering from depression, or whatever it may be, it is just as real as any other illness that has to be fought.

    I don’t consider autism an “illness.” But it is among the “unseen” – looking at a child/individual, you can’t always tell right away they are a child who is autistic. (I can’t remember.. Is a child with autism the better way to say it?)

    This comment is all over the place, but is where my head is at after learning of Robin Williams death. I only hope that I can continue to see the light in the darkness.

    • Your comment was no more “all over the place “than my post. I think it’s nearly impossible to gather the collective pieces of ourselves this morning into anything remotely coherent. Not to say that you haven’t done that here, but to acknowledge that I understand the struggle today.

      In answer to your question, we tend to use the word “autistic” both to reclaim the word from its stigma and to acknowledge its importance as part of my daughters identity. More on that here – http://adiaryofamom.wordpress.com/2012/07/07/person-first/

      But bottom line, we respect everyone’s choice of language.

      Thank you for your kind words and for sharing so generously here. It means far more than you might imagine.

  3. It is truly unfortunate that the same methods that are used with NT kids are being used for children like Brooke. Public schools, at least, seem to have not only accepted, but embraced the idea that a quiet classroom is a good classroom. Teach the children to sit and “behave”. However, much as you described with the behavior being merely ignored, even the NT kids, if not given an outlet for who and what each of them is, will release their inner behaviors outside of school.

    For some, that may be merely extra activity to burn off the energy that was suppressed in school. For others, it may turn to bullying siblings or other unacceptable behaviors at home.

    I have long been an opponent of public education; the reasons for this are many and varied, but in general, I don’t see that head-counting and “sit down and shut up” are important to education. Even less so for those children with special needs. Sadly, private schools are few and far between, generally either horrendously expensive or church-based, so don’t always fit in with what people need or want.

    All children need to have their intellectual and emotional needs recognized instead of suppressed. Not that I am making a direct analogy, other than to point out that what we see outwardly is not always indicative of what is inside, but regarding a few well-known serial killers, the following was said: “He seemed like such a nice, quiet guy.” We never can tell…

  4. My daughter is 36, “on the spectrum,” and struggling . . . Let’s just leave it there-struggling. There are good days and not so good days for her and for me. She is the oldest of four, the others being 34, 30, and 21. I am 56. I don’t even know how I found your blog; I was probably following links on parenting posts on Facebook (as you do) about a month ago. Without going into further detail about my experience over the past 36 years, mistakes, misdiagnoses, psychotherapy, guilt, anger, exhaustion, judgement, guilt, anger, I am moved to say thank you. THANK YOU.
    Thanks for sharing your life in your blog. Thanks for sharing your daughters. Thanks to Katie and Brooke for consenting to your sharing. Out of space here, but please know you have touched me.

  5. Your prose is beautiful. This broke my heart and healed it at once. Your words are the words I have been looking for to communicate with my 18 month old and 4 year old ASD/SPD boys’ therapists and service coordinators. I was a PA certified elementary/special ed teacher/autism specialist before I had my boys, and I always thought I knew what I was doing when counseling parents and working with their children. I had no idea how little I knew until my oldest was diagnosed a year ago. I was never a fan of ABA as I had been taught to administer/facilitate the therapy, but I did what I was told would work best – and we saw great results. I always felt that our “results” were a false pretense, and your words explain just what I had been feeling in my heart. Thank you. I will be sharing this with our Team. Thank you super momma!

  6. Jess,

    I, too, am celebrating my birthday – today, not tomorrow, and 45, not 44. I was out for a beer and appetizers with my husband and son last night (no beer for my son, he’s only 13) when my phone alerted me of Robin’s apparent suicide. It hit me hard as well. He was a special talent, and you did a wonderful job of describing how his comedic genius and even his depth of dramatic acting skills pleased the world and yet obviously come from a deeper pain that he’s surely been dealing with throughout his entire life. Two sides of the same coin you said. We know this viscerally, as we sometimes experience beauty so intense it hurts. And we know that we are all formed by what we push against, just as a watermelon grown inside a cube takes the shape of the cube, we end up formed in the shape of the forces we bumped up against during our own formation.

    On that note, it is especially touching for me that you went to the issue of behavioral modification rather than finding a way to soothe Brooke’s inner questions. What especially touched my heart is the mention of ignoring. Please, please, please do not ever (as her parent) use ignoring as a form of human behavior modification!

    As I mentioned earlier, I’m 45 years old today. My parents are in town in their ‘vacation apartment’ to spend time with us and even to help us celebrate our birthdays. My father is 10 years into a form of dementia that has been very slow progressing, but still, he’s rather a shell of who he used to be intellectually. He used to be a genius – now all he has is my mother. She is his security and he cannot bear to let her get out of his sight. She is his world.

    On the other hand, she is who she has always been. There is a loving and giving and caring person inside there – I believe this to be true and I love her for it, but on the outside she is often, if not nearly always, impossible to be around. She is focused on herself while interacting, seems to see everything from her point of view only, and she’s angry. Always angry, quick loud temper (she’s loud anyway). And her main forms of behavior modifications for me as a child were ignoring and punishing.

    My father loved us dearly and was a much more understanding and calm parent, BUT he believed that he needed to be the bread-winner, and so he “let” my mom do the lion’s share of the parenting. And she ignored me. I am surely on the spectrum (although I’ve never been diagnosed) and I was exquisitely sensitive to sensory input as a child (even through today, really, but now that I can control my environment as an adult, I usually only have issues with loud and cacophonic sound). Not only did she seem to not understand this, she seemed to not believe I felt this way. It’s difficult to describe how she treated me – how an otherwise loving and reasonable human somehow ignored / punished me into being a very smart, very quiet, very sad robot who would not get on her nerves. But that is exactly what I learned to do. Punishing is bad – it hurts and I often felt misunderstood as to my intentions, but the ignoring was the worst. When she felt like it, she pretended I didn’t exist from the time I was a very small person, probably even from birth. She likes to tell the story of putting me in a back room alone as an infant with the door closed for several hours because I had colic and would cry. She also likes to tell the story of me at 15 months old, when she was ignoring me to read a book and I got the courage to put my hand on her book and demand “No Wead (Read)!”, and so she spanked me to let me know that what she was doing was always more important than what I might want. Yes these are the stories she likes to tell.

    One of the biggest positives from my story is that my two children have never been ignored a moment in their lives. It’s possible that my huge-personalitied (yes, I made that word up) daughter might have benefited from a little ignoring from time to time, because she has always known that the world revolves around her and we were all only put here to serve her (tongue in cheek, of course). But they have a strong sense of self and confidence and belief in themselves that I am ever so proud of, and indirectly that comes from my mother and what she taught me not to do.

    On the other hand are my own struggles of trying to find a value in myself and any sort of sense of self. Despite having the best grades in school and all the accolades that went with it, getting a degree in Engineering with the highest GPA of my class and working nearly 20 years as a successful Civil Engineer / Manager, I struggle every day, really almost every minute, to believe in myself. Truthfully, I am a timid scared (and sometimes indignant) 5 year old, wondering why my mother (everyone) doesn’t acknowledge me. Does my voice not make a sound? Do I ever matter? To anyone?

    So there it is. I’m not giving up. I take medicine. I see my therapists, as I have for many years. I love my kids and I know that the best thing I could ever do is be here for them tomorrow and the tomorrow after that and the one after that. But my heart breaks for those who come to a point in their lives where dying is better than living. I have come to that point before and made it through several times. Knowing that Robin Williams succumbed to it overwhelms me with sadness, but knowing there are people like you out there who constantly question themselves, their effect on others, and who constantly try to improve themselves and educate the world as well, knowing all that gives me hope.

    Thanks for writing your heartfelt and touching words. I enjoy reading them, and you are making a difference.

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