Friday, December 12, 2014

The perfect child

Today I read a piece by my friend Amy Julia Becker.  She writes about her life, and about her daughter, Penny, who has Down syndrome.  She writes in political, religious, and personal ways.  An excellent writer and resource.

The article triggered some thoughts in me.  I'm not in any way saying that Amy Julia said something inappropriate--not at all!  Instead, I'm thinking about my reactions.  It can be so easy to see a child with Down syndrome as just as good as.

As I read about Penny becoming a serious contender for her third grade class, I thought, "Whoa, great spelling and reading, Penny!"  Then a few minutes later, walking across campus, I realized that another thought was bubbling up:  "She's 8.  She can spell all kinds of words.  Maybelle's 6, and she can be almost impossible to understand, not to mention to spell.  She'll never win the spelling contest.  I have to work on this!"
We all know what an important member of the food group
frosting is.  I'm proud to say that Maybelle and I loved it.
I have to work on this!  I should bring her home from school early so that we can study math!  I'm not effective enough as a mother!

And the next level:

She's not acceptable as a person with Down syndrome unless she's impressive!  What kind of person will she be if she and I don't work hard enough?

This, of course, is a kind of guilt-ridden series of thoughts that I would have had anyway--it's not exclusively because Maybelle has Down syndrome.  My mother has assured me many times that my freaking-out-motherhood is pretty normal, and I believe her.

But I know that having Down syndrome does make Maybelle's life complicated in certain ways, and it's easy for me to fall into the trap that says things are only okay if she's slow, but ultimately they same as every other.  She's just slow.  But she'll get there.

Fortunately yesterday and today I saw my good friend Cindi May, who happens to be a national expert on best-practices for including kids with intellectual disabilities in the school system.  She's amazing, and she told me several things that stuck with me:

  • Maybelle's not supposed to meet the academic standards of kids her age.  Ever.  She's going to fall behind her peers in lots of ways.  And that's fine.  What matters is that she has the skills that will help her to be functional:  an ability to connect with other people, to behave, to pay attention, to interact with her peers, to communicate as best she can.  Of course she's supposed to get as much as she can from her school work, but that's not ultimately not the point.
  • And schools need to know that this isn't the point.  Recently a couple of people told me that Maybelle would need to do kindergarten again because she hasn't gotten all her kindergarten stuff this year.  Cindi said, "If we believed that, then she'd be in kindergarten for the rest of her life.  She's not going to learn what typical kids learn in kindergarten.  And if professionals believe that she's so slow that she shouldn't be with her peers, she'll be pulled out into special ed."
  • "It doesn't matter who she is or how much she fits our models of school expectations.  What matters is that she learn to be a person in the world, and her peers learn it, too.  She has to be included in her classes."
You got it, Cindi.  She always says thing to me that resonate, make me hopeful, make me ready to keep fighting.  And she loves Maybelle for the person Maybelle is.  They sing together, laugh together.  Cindi's tough with her.  Her whole family both adores Maybelle and is happy to set boundaries for her. They recognize Maybelle as a six year old kid.

As I was thinking about this, I started thinking about a part of my book, the book I'm working on.  Is it fair to put a few of those paragraphs here?  I guess I will:

          But I’ve begun to move beyond this initial framing.  I’m questioning, challenging the notion that everything is fine because Maybelle’s differences are merely delays.  The point isn’t that Maybelle is as smart as typical folks.  The point isn’t that she’ll eventually be that smart, or close to it, if we wait long enough and work hard enough.  The point isn’t that she has other qualities that “make up for” her intellectual disability.  What would that even mean?
          The point is that she’s a valuable human being, just as she is.  Everything is fine because she’s a person in the world.  I don’t want to make her fit into existing systems—I want her to help challenge and change those systems.  “Normal” is not the goal.  Maybelle may never do certain things our culture defines as “normal” and therefore acceptable.  She may never write, because fine motor skills are incredibly difficult for her.  Even at five, she hates holding a marker and will only make vertical lines and circles on the paper.  She’s an impressive reader, at this point more literate than many of her classmates, but this is in large part because people with Down syndrome are often visual learners.  It doesn’t mean in some simplistic way that Maybelle is “smarter.”  Will she ever talk clearly?  Will she ever understand mathematics enough to pay for things?  Will she ever be able to drive?  I don’t know.
          And yet I argue that she’s a full and valuable person, an identity that I initiated as her mother.  But Maybelle’s full personhood doesn’t stop with me or with my family.  Full, valued personhood demands broader societal recognition.  It demands recognition at the practical level:  Maybelle and many other people must have schools and other kinds of support, like occupational therapy and accessible housing, available to them.  More importantly, this recognition must also take place at the ideological level, in the ways we evaluate human identity.

So many of my valuable friends and colleagues have made this point:  George Estreich, Rachel Adams, Michael Berube (do you have a better website than this, Michael?).  Ian Brown has addressed the issue.   Nancy and Bridget Brown.  I know there are so many more…I can't list them all (even Elizabeth, Kate, Lisa, and Meriah). I'm not alone in this, and it really helps.

So let me end with another quote from my book:

George says that Laura isn’t qualitatively different from any children.  He writes, “Anything can happen.  We do what we would do if they had the same number of chromosomes:  we try to prepare them for the future we don’t know.”  When Maybelle was born, I didn’t know about the “perfect child.”  As she became a human being in my world, things became different.  I try to prepare her for the future, and it became clear to me that preparation has nothing to do with being the perfect kid.  I began the process of releasing my hidden beliefs about childhood and parenthood. It’s about loving who we have.  Recognizing that the world is full of diversity, and inviting diverse people to the table.


  1. Shame to say, I do not have a better website than that-- it is just the page we put up over my old blog. More important, this is the very heart of the Dialectic of Disability, is it not? To bounce back and forth between "I'm pushing my child too hard" and "I'm not doing enough for my child"? It can be so hard to stay afloat when those waves hit ... but you definitely have your head well above water. And I can't wait for your book! Thanks for the snippets here....

    1. First of all, your are the independent person commenting on the blog itself while everyone else in the world is commenting on Facebook. Technology. Very confusing.

      Second, you're always my coach here--or my mentor, or teacher, or something--because you often pass along terms or ideas, and act as though I'm already taking part in this conversation. Fortunately, I DO know about the dialectic of disability, but I hadn't used that term at all. So this is useful.