On April 3, Amy participated in the 2013 Council for Exception Children (CEC) Convention & Expo in San Antonio, Texas. There, she gave the keynote speech to over 2,000 people who attended the General Session.

Each year, the event attracts thousands of teacher educators, graduate students, supervisors, administrators, speech and occupational therapists, and experts/practitioners in all fields of learning differences world-wide. The goal of the annual CEC Convention & Expo is to provide the most current information on evidence-based practices, instructional methodologies, strategies, and practical information to improve services to children and youth with disabilities and/or those who are gifted.

Amy wants to share her keynote speech with you — so, here you go!

The Right Size

CEC Conference

San Antonio, April 3, 2013

Thank you, everyone.  It is so very good to be here at CEC.  Thank you for asking me to participate in this amazing event.

I am overwhelmed and deeply humbled by the expertise, knowledge and dedication in this room.  To quote the classic American text Wayne’s World:  “I’m not worthy!”  But as a mother to two wildly different children, and as an increasingly dedicated activist in the disability community, I suppose I can contribute some thoughts to the discussion here today.

Exceptional.

I’ve been mulling over that word since being invited to this conference.  Some definitions I’ve run across:

1.   Being an exception; uncommon.

2.  Well above average; extraordinary:

3.  Deviating widely from a norm, as of physical or mental ability: special educational provisions for exceptional children

There are ways I suppose we all want to be “exceptional” – the fastest runner, the star of the play, the best grade – and ways that we don’t:  the only one not chosen or the only one in seventh grade wearing Lees, not Levis.  Yup, that would be me.  8^h grade, Gideon Welles Junior High.  We’ll talk later…

But then I got to Hollywood, got on TV shows, was fussed over for being “exceptional” in a different way.  And guess what? That felt uncomfortable too.  I had just come from a radically collaborative theater company in New York. I didn’t want to lord it over the prop guy or ask for shrimp in my trailer or Botox in my head or the myriad strange, egomaniacal demands that were legend among my newfound tribe. I wanted to do my job in the company of others.  I wanted to be a worker among workers.  I wanted my contribution to be right-sized.

Right sized.

This is a concept that has been presented to me by my various spiritual Yodas over the years. How do we keep a problem in its proper perspective? How do we not let a challenge overwhelm our lives or define who we are? When I was younger  (and okay, last week) I would swing between the poles of what I call Hero and Zero. “I’m GREAT!  My life is FANTASTIC! I see now! Everything works out for a REASON!” turns easily to “Nobody GETS it!  It will never get BETTER! Nobody knows the TROUBLE I’ve seen.”

Those of us who have been blessed to have a special needs child know how this internal dialogue comes up in parenting moments.  We’re at the park.  Our child is playing solo.  Another child comes up, wants to play.  We hold our breath for some odd behavior or nonsensical utterance that elicits a sideways look from the new playmate. We armor ourselves (it has, in my case, been over a decade of this) but somehow the arrow always pierces through.  Hero/zero time.  I often initially side with the new playmate (I am ashamed to say) and think, “My daughter is so weird!  Why does she have to be so weird?”  I hate myself.  I swing wildly to the other side (“New playmate, you are an idiot!  My daughter has more wisdom than you’ll ever know!”)  I swing between the poles so fast I get whiplash.

Where is the middle ground?  Where is the problem right-sized?

When my 12-year-old daughter Charlotte was born, I assumed she would be exceptional.  She was my kid, right?  She’d be exceptionally beautiful, exceptionally smart and of course exceptionally even-tempered.  And wise.  And a great piano player.  Sure, when I was pregnant I spouted off treacle about how I’d be happy with whatever child I received – blah blah blah — but as soon as Charlotte arrived on the scene, screechy and sleepless, I realized I’d been full of B.S.  There’s a scorecard somewhere, an Abacus in the sky, that all of us competitive Type-A’s report to.  “Is she a good baby?” “Oh yes!” I’d say (lying). “Mine sleeps 6 hours at a stretch!” “Really?” “Mine is so happy! She’s never even had a tantrum?”  Okay, now I couldn’t even pretend anymore.   Charlotte was passionate and tantrum-y and awesome and infuriating and … and …..   She was, from the get, utterly herself.

Welcome to new parenthood, where you can’t control everything and your heart walks outside your body.

At two, she wasn’t talking and at three I got her an IEP.  Ultimately in that grueling process known to so many here, I went from seeing my child as a person to seeing her as a long list of deficits.  Language, motor skills, cognitive, sensory – there wasn’t one box we didn’t check.  I couldn’t believe how many things were “wrong” with her!  How much work we had to do with this wee bairn, while other kids played in the park all day!  I felt so bad for Charlotte, having to work so hard to do what came easily to most other children her age.  That was when I wasn’t deeply resentful of her for sucking my life away with her various therapies.  We were a couple of zeros.  Nothing was right-sized then.

We needed better glasses to see, so when she was five, I put her in a Waldorf kindergarten.  I stepped away from IEP-land (though wisely never stopped her therapies).  I was sick of seeing her in terms of boxes checked and assessments given.  I had stopped seeing her.

It was good decision.  The Waldorf environment soothed our souls (and because she wasn’t speaking much then we could get away with lying about how much TV she watched.)  She had a lovely kinder teacher who took genuine pleasure in her open heart and playful enthusiasm.  The teacher even celebrated the fact that she was “coming into her own at her own pace” and gave me books about Indigo children with wide eyes like hers – children who seemed to be delayed but really were advanced and leading the way for all mankind.  All right!  From zero to hero!  We were back on top!

As you probably know, Waldorf kindergarten is non-academic.  I knew another decision would be made when she started first grade, and we assessed whether the teaching style worked for her.  Waldorf makes a big deal about the “class teacher” as that one individual is (in a perfect world), supposed to stay with a student from first til eighth grade.  I knew much would depend on that individual.

I spoke to this woman before the school year commenced.  “Here are Charlotte’s records for speech and occupational therapy,” I said, thrusting organized papers at her, “and her tutor is excited to touch base with you.”

Rose (not her real name, the names have been changed to protect the lousy), waved the reports away, and fell into the familiar, mind-numbing Waldorf singsong:  “I want to meet Charlotte where she is,” she smiled, “I’ll assess on my own, based on my instinct.”

The second day of school Rose called us in a panic.  The Waldorf singsong was replaced by agitation.  “We need to assess if this is the right place for Charlotte,” she said, knowing that it wasn’t,  “I don’t know if I can meet her needs,” she said, knowing she couldn’t.

“Perhaps if you talked to the speech therapist?”  I said,  “Or maybe she needs a shadow?  I’m not surprised you are having this reaction,” I said, “That’s why I wanted you to read those reports….”

I could not believe how quickly she shut the door.  How quickly we went from Indigo Child to pariah.  And the saddest thing?  The sweet culture that the kinder teacher had fostered, where Charlotte was part of a group and her differences accepted – the new class teacher destroyed that in one day.  She looked at Charlotte as a pariah so Char’s pals did too.  The institutional culture of inclusion simply wasn’t there.  I picked up my child from school and she’d be playing in the dirt by herself.  No bridge building, no nurturing of relationships — that were already established.  The other children got the message loud and clear:  there was normal and there was abnormal and my daughter was a party of one in that second group.

We got out as fast as you would a burning building.

In his brilliant recent book Far From the Tree, Andrew Sullivan writes,  “All parenting turns on a crucial question:  to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves.”  To this I would add:  who is defining what a “best self” is?  When do we step in?  When do we let go?  How do we and our problems become right-sized once again?

After the Waldorf “experiment,” we found the inclusive charter school where both my kids still attend, CHIME Charter in Woodland Hills, CA.  I don’t want to make this an advertisement for CHIME (although I’ll probably wax rhapsodic at some point), except to say this:  at CHIME, Charlotte’s challenges became right-sized.  CHIME’s teachers and administrators clearly see the issues that need to be faced.  In her case that means significant cognitive differences that necessitate adapted curriculum and classroom support, among other services.  There’s no floating off into La-La Indigo Children world (as much as I loved that world, where my Charlotte was Queen), and no vague hopes about things “resolving on their own.”  The teachers are constantly bringing new techniques and strategies to the table.  Some work and some don’t, but they are deeply committed to teaching specifically to every student, whatever the need.

But much more than that, the problems themselves are put in their true perspective.  Charlotte is not a list of deficiencies.  She is a person who has strengths to be celebrated and challenges that need support.  She is, in fact, no different from anyone else.  Not exceptional at all, actually.

Charlotte never received an umbrella diagnosis, and we still don’t know the “reason” for her differences.  At times I’ve really, really wanted that diagnosis.  I wanted to join a club, define myself forever as the mother of a such-and-such child. And of course get a prescription for the Magic Pill!  But now I think the lack of a label has been a good thing.  I have, after all, found my club:  in the students and parents who walk this road with me.  And as the poets say, “To suggest is to create; to name is to destroy.”  Why do I have a need to label and then potentially pigeonhole my girl?  The therapies are all similar; we treat the symptoms as they arise, no matter the cause.  A label would seduce me into rigidly defining my child when what I really want to do is see her.

Along the way, I had another child.  Bodhi Russell is in many ways Charlotte’s mirror-opposite.  He really is well balanced, well spoken, deeply intelligent and wonderfully precocious.  He is also a fabulous 7-year-old pain in the ass.  My most deeply shrouded fear had been that if I ever had a child without Charlotte’s issues that I would love that child more, or more easily, than I love Charlotte.  I’m here to say that I don’t.  I am also here to say that the lessons I learned (and am learning) through parenting a special needs child have made me a better parent to a child without those issues.  All kids have special needs, if that means that we, as guardians, need to attend to their specific confluence of traits.  I am proud to say that I no longer employ words like “typical,” “atypical,” “normal” and “abnormal.”  There are strengths and there are challenges that need attention. I believe all children are extraordinary.  For if my special needs daughter is considered extraordinary, where does that leave my “typically” presenting son?

Attending a fully inclusive school benefits both my children.  Their academics are tailored specifically.  They are part of a community of individuals of varying abilities.  This community reflects the world in which they’ll live as adults, where people are not segregated based on race, religion, physical or cognitive differences.  A fully inclusive school is a microcosm where kids learn side by side on a daily basis what it is to be of service to others and to advocate for themselves.

Another result of a fully inclusive school is that our own family is now desegregated.  Charlotte and Bodhi can go to the same school where this inclusive philosophy underscores everything.  That message is that everyone is working on something – reading, walking, long division or socialization — and everyone deserves support in his or her hard work.  Ever since Brown v Board of Ed in 1955 and IDEA in 1975, it is the law of the land that students not be segregated based on the color of their skin or the level of their abilities.  Yet even today it takes a concerted effort by a school community to allow kids to be together and learn together and see beyond perceived difference.

I think kids have an easier time doing this than we older folks do. My dear father-in-law is deteriorating with ALS.  He can no longer walk or speak and his last remaining functional limb – his right arm – is going quickly.  We adults grieve for his loss and our memory of what he used to be.  My children, who adore him and who also knew him before his diagnosis, do not grieve in the same way.  They simply want to know, “Can Grandpa Bob walk?” When I say no, they climb onto his chair and explore the levers with him.  They never stop including him and speaking to him, although they receive little speech back.  Now, some of this is because they are kids and they love him dearly.  But I think some of this is their innate understanding that abilities shift, that identity is not tied to whether someone can walk or speak clearly.  Also, they have intimate friends that they see on a daily basis who cannot walk or are nonverbal. To them, Grandpa Bob has not “lost” anything – he has changed.  They assume (rightly) that he’s in there, listening to them and loving them. The difference is just that he’s able do to different things at this particular moment.

Maybe Bodhi and Charlotte are part of the Indigo generation after all.

I am in awe of the people in this room who spend their lives creating services and support for all kinds of learners and families like ours.  You understand the balance between what is unique – a child’s learning style and needs – and what is universal – that child’s right to a life of dignity, community and purpose. I read the list of CEC’s core values — dignity and worth of all individuals, diversity and inclusiveness, advocacy and social justice – and am so grateful to share this mission with you.  And of course, I am grateful to my unique, brilliant, shining star of a daughter for blazing this trail towards a more fully inclusive society.

It is not an easy road.  You all know it’s not.  Would I wish special needs on anyone?  Probably not.  Have my ideas about what is a special need changed in the last ten years?  Absolutely.  Am I grateful to whatever needs got us into the door at CHIME and into a new way of thinking about the world?  No doubt.  As Leonard Cohen says:

Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in

My daughter has shown me, again and again, that it is because of the cracks in the armor of our perfectionism that new light can come in, the light of intimacy and help and hope. The crack lets out the poisoned air of isolation and pretense, and we become right-sized once again.

I will leave you with this last story.

About a year ago I did a play in New York for some months.  I work away from my family very little – not out of any great conviction, but out of sheer luck that most of my jobs have been in LA.  But the kids are older now and this role was great, and my husband was around so off I went.

During my second or third week away, Charlotte had a terrible time.  She was tantrumming wildly, unable to get a hold of herself, taking her rage out on Bodhi – terrible.  I talked to specialists in New York and spun all sorts of theories:  She has oppositional defiance disorder! A serious anxiety disorder! She needs intensive therapy! She needs meds — the magical pill, please God, the magical pill!  I made a date to talk to our dear pediatrician back home.

We spoke.  Helen listened attentively to all the factors and the events of the past week.  She paused, and then began speaking slowly and carefully.  This is what she said:   “Amy, I know that when a child has any kind of special need, there is a tendency to pathologize everything.  But from what I’m hearing and knowing Charlotte as I do, I have to surmise that her problem is –“ I literally held my breath, looking out at the Chrysler Building – “puberty.”

Puberty.

Where nothing is every right-sized ever again.

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Thank you so much.

For further info about the Convention & Expo or about the CEC, please visit their web site at: www.cec.sped.org