What to Expect When You Expect Fiona

Imagine you’re in a room with a rat. Do you believe that the thoughts you have in your head will influence the rat’s movements?

That’s what reporter Alix Spiegal asked last weekend on the popular radio program, This American Life. Most people said, No. Of course not. Your thoughts don’t influence the rat.

Me? I said yes, but that’s only because I was raised by a mom and a stepdad who believed my childhood worries about the ceiling fan spinning off and hitting me might actually make the ceiling fan spin off and hit me. So, you know, woo-woo notions are easier for me to believe.

But most people sensibly say no, a person’s thoughts don’t influence a rat’s behavior. And yet, research psychologist Bob Rosenthal discovered the answer is “yes.”

Rosenthal took a bunch of what he called “average lab rats,” and told people that the rats were either incredibly smart or incredibly dumb. Then he told people to run the (“incredibly smart” or “incredibly dumb”) rat through a maze and record how well it performed. The so-called smart rats performed nearly twice as well as the so-called dumb rats.

But remember: none of the rats was especially dumb or smart. They were all, as Rosenthal said, “average lab rats.”

Cartoon face of Smart Rat. Or Dumb Rat. Either one.

Cartoon face of Smart Rat. Or Dumb Rat. Either one.

So what was going on? Why the wide gap in performance? From This American Life: “The expectations that the experimenters carried in their heads subtly changed the way the experimenters touched the rats, and that changed the way that the rats behaved. . . . So when the experimenters thought that the rats were really smart, they felt more warmly towards the rats, and so they touched them more gently.”

It’s something I’ve known, at least in theory, for as long as I’ve been an educator—Your expectations matter. Here’s Alix Spiegal:

“Research has shown that a teacher’s expectations can raise or lower a student’s IQ score, that a mother’s expectations influence the drinking behavior of her middle schooler, that military trainers’ expectations can literally make a soldier run faster or slower.”

If you’re a teacher, you’re nodding. You already know this. But have you figured out the answer to this next question? How high is a high expectation before it becomes impossible? Certainly, there is a limit, right? For instance, say a person doesn’t have eyeballs. We can’t ever expect that person to see, right? Alix Spiegal asks this very question in her story.

Last weekend’s This American Life takes your highest bar and shoots it into the stratosphere. I highly recommend the entire hour-long story, called “Batman,” but the short answer is: yes, reporter Alix Spiegal learns that we can expect a person without eyeballs to “see.” Because in fact, Daniel Kish, who does not have eyeballs, who uses the clicks of his tongue to hike cliffs and ride bikes, has the MRI results very similar to a sighted person. His brain lights up “like a disco ball,” Spiegal says. He “sees.”

It’s no magic trick. In fact, Kish rejects the carnivalesque appeal of his bike-riding abilities, and his buddy, Brian Bushway mimics that appeal brilliantly. “So step right up, step right up, and see the amazing Daniel Kish do something that everybody can, but most people don’t.” Bushway is also blind, and also an echolocator—a person who uses sound to reflect the location of objects.

Again, I highly recommend the entire hour. The story suggests that perhaps the biggest obstacle a person with disabilities faces isn’t the disability itself, but the way society treats that person. The way people talk to her. The way people hold their bodies around him. The messages a person with disabilities receive about what he or she can or cannot do. These aren’t new findings, but This American Life illustrates them deftly.

Here’s psychologist Carol Dweck, offering a quote that breaks my freaking heart: “You may be standing farther away from someone you have lower expectations for, you may not be making as much eye contact. And it’s not something you can put your finger on. We’re not usually aware of how we are conveying our expectations to other people, but it’s there.”

Fiona smiling in a black winter hat and thick gray scarf.

Fiona smiling in a black winter hat and thick gray scarf.

I think of Fiona. I think of the many professionals who have entered her life. I think of the ones who have blown me away with their warmth and possibility and optimism, who have helped me raise the bar for my kid. And I think of a few who seemed a little distant, a little off, a little, I don’t know. What was it? Cold? It’s hard to put your finger on it, but sometimes you just know. And Carol Dweck and Bob Rosenthal prove this to me: Fiona knows too. She knows when a bar is set low.

“She really surprised me,” a therapist once said to me as she readied to leave my home. “I really didn’t know what she was capable of.” On one hand, I was glad Fiona had changed the therapist’s mind. On the other hand, I was pissed Fiona had to prove herself before this professional would presume competence.

But so it goes. Folks, the takeaway here is a painful twist on If you believe you can’t, you won’t. This version goes: If you believe they can’t, they won’t. Or, to put it another way, If they believe you can’t, you won’t. The power is palpable and terrifying.

Maybe you’re starting to develop a contrary response like the one that so readily wants to emerge in me. Maybe deep down you’re doubting with: Yeah, but so. As in, Yeah, but so, what if you have a child with significant cognitive disabilities. Certainly she’ll never learn to read, right? Or never learn to cook herself dinner, right? Or certainly she can’t be potty trained before age such-and-such, right, if at all? Or… Or… Or…

I have my own Yeah, but so responses. I just wrote three of them in the paragraph above. As in, Okay, it turns out that, if taught echolocation, a boy who’s visually impaired can experience the world very similarly to a sighted person,

but certainly Fiona is too disabled to. . . .

Friends, here’s what I’m proposing: What if whatever I add to the end of that sentence is actually not true. But certainly Fiona is too disabled to. . . . What if Fiona is actually quite capable—in her own way and in her own time—of all things a typical kid can do?

It’s almost too audacious for me to believe. She has low tone. Her brain can’t get her mouth to say what her mind knows. Her corpus callosum is thinner than normal, thus making balance really difficult. She is three and can’t yet walk independently. There are many obstacles in Fiona’s way to achieve what typical kids seem to do in lightning speed.

Fiona standing on grass with her walker.

Fiona standing on grass with her walker.

But Daniel Kish doesn’t have eyeballs, and he sees.

While it’s true that Fiona’s obstacles are great, greater than the average kid, I suppose I’m writing to say this: I vow not to be another one of those obstacles. I vow to constantly investigate my expectations, see where I’m limiting her, and know that she will feel those limits. She will sense them in my body, in my tone, in my eyes. So I vow to dare to believe she can. To open the doors and windows wide to life’s possibilities, and say, Yes. I’ll try on this paradigm like a Wonder Woman costume. See here, my Wonder Woman wrist bands. See here, my lasso of truth.

I’ve been investigating this issue for a few days now. Here are three key moments I experienced, all of which happened yesterday:

One: I am sitting at a coffee shop, chatting with two friends about potty training toddlers. I suggest perhaps Petra is ready for potty training. A friend tells me how wonderful it will be to live diaper-free. I think, Yeah, but I have Fiona. Fiona might always wear…. and then I stop myself. Wait. What if I tried to potty train Fiona too? Why haven’t I tried to potty train her? Because kids her age with Wolf Hirschhorn Syndrome aren’t potty trained. Because some people with WHS are never potty trained. Because I figured she wouldn’t be able to do it yet, and trying would set ourselves up for failure.

Two: I am browsing an antique store. I see an old set of cards, each with a letter of the alphabet and a corresponding object. U. Umbrella. I. Ice Cream. I decide I’ll buy them. Petra loves saying the ABC’s, so she’ll like learning the letters. And Fiona loves the feel of cards in her hands, so she’ll like touching them. This is what I immediately think.

I realize I dropped the reading bar way low for my daughter, lower than is humane for a typical child. And why? Because most kids with Fiona’s syndrome can’t read. Because if they can read, they didn’t learn at age 4. Because what if I try, and push her, and she fails?

(I’m noticing that a fear of failure is a huge motivator in my lowered expectations.)

Three: I see a photo on Facebook of a new toddler bed. The kid is a few months older than Fiona, and the kid also has WHS. The bed looks safe and cushy and colorful. It is low to the ground and allows the child to climb in and out of it independently. I realize I still put Fiona in a crib. Why? Because she fits in the crib. Because it’s just what I do. Because older kids with WHS are still in cribs. Because I figure it’s safer.

In the TAL episode, Brian Bushway is teaching a blind boy how to sense where he is beside a highly trafficked street. Here are the two reporters, retelling the scene:

Lulu Miller: And picture this. I mean, this is like a little five-year-old boy with a tiny white cane–

 Alix Spiegal: Kind of tapping his way towards oncoming traffic?

Lulu Miller: Tapping his way toward oncoming traffic. Which is a jarring sight. And the person closest to him is Brian, who is also blind…. And he’s getting closer and closer to the edge of the road. Four feet. Three feet. And then his godmother just shoots out and grabs him back.

Bushway says this very moment is often his greatest obstacle in teaching blind children echolocation. “Often sighted people will jump in a half a second too soon, and they rob the blind student from that learning moment. And that just keeps happening over and over again, and I think so many blind people’s lives, they never get that moment of what it is to really have that self-confidence to trust your senses to know, oh, if I do use my cane properly and I am listening attentively to information around me, I’ll be OK.”

Following this scene is a harrowing conclusion. Sometimes it is love that gets in the way. In our efforts to love our kids, we might do some harm.

Me, standing over Fiona, holding her hands, smiling at the camera. We're both bundled in winter gear and standing in the sun.

Me, standing over Fiona, holding her hands so she can stand up. We’re both bundled in winter gear and smiling in the sun.

“It’s very hard as a parent with a child who’s visually impaired to let go,” says Daniel Norris, of Vermont Association for the Blind and Visually Impaired “Those parents, they want to keep their child safe, they want their child to not suffer. And that’s very noble, but holds the kids back.”

Today, I watched Fiona try to climb into an antique rocking chair I just bought her. The chair was low to the ground, but it rocked, so when she got her knee onto it and it budged, she braced herself, looked at me and whined.

I was nursing Petra, so I couldn’t get up, but I felt the mother’s urge. She can’t. It’s too wobbly. I saw her thin-boned eighteen pounds on the ground. I felt what seems to be at the heart of low expectations: fear of failure. She’ll fail. She’ll fall. She’ll hurt herself.

From my vantage point on the couch, I looked at the chair. It was a sturdy chair, similar to the other chairs Fiona climbs into alone. “You can do it,” I told her, and she tried again.

She got one knee up, then grabbed the arm to turn her body around, and it wobbled again. She braced herself again, whined, looked at me.

“You got this,” I said.

She slid her body around, landed on her butt, and sat upright in the antique rocking chair. She smiled a little.

Reader, I will try to keep asking these questions of myself, for as long as I parent Fiona: What are my expectations of my daughter? Can they be higher? Are they unconsciously low? How can I remember that a man without eyeballs sees?

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16 thoughts on “What to Expect When You Expect Fiona

  1. Heather… I am seeing this with Denise all the time. I try real hard to be positive and to not limit my expectations of her, but I catch myself that I do that way too often.
    I remember how her development surged when we switched babysitters. When we switched from one (my own mother) who was worrying about her too much, who was afraid of her possible seizures, who was putting too much into her diagnosis. She was the best babysitter ever when she was helping us care for Denise’s brother, but it was a completely different story with Denise. Denise was like a faded flower in that environment.

    And then we switched to our current babysitter, and guess what? She believes and tells Denise EVERY DAY that she is so smart, that she can do anything. And Denise’s skills exploded.

    Thank you for yet another reminder to work on my own self, and to send a love letter to our ex-pediatrician who diagnosed her, who after delivering the diagnosis told me: “Only she will show us how far she will get”.

  2. About six years ago I started horse back riding lessons and the first lesson was that animals don’t reason, they intuit – they are “right-brain” creatures. When I get on a horse my thoughts are sensed by the horse. Without clear direction from me as the rider, the horse will take over as boss. And the horse knows what directions I am giving her. She really does “read my mind”. If I think that she will throw me, or if I think that she will not listen to me, indeed, that will happen. People don’t believe this, but as you know, it is true.

    A long time ago women were very good intuiters, so good that many were burned for being “witches” since the male mind could (can) not understand and therefore feared intuition.

    You are doing great work Heather in all aspects of your life.
    Mary

  3. Reblogged this on THE TERRY TUTORS BLOG and commented:
    An insightful piece on the power of internalizing positive expectations and maintaining genuine hope in what may seem to others like a lost cause.

    “It’s very hard as a parent with a child who’s visually impaired to let go,” says Daniel Norris, of Vermont Association for the Blind and Visually Impaired “Those parents, they want to keep their child safe, they want their child to not suffer. And that’s very noble, but holds the kids back.”

    Holding our students back with our water-downed expectations, holds us as providers and parents back too.

    Let’s do ourselves a favor and have greater, even wild, expectations for not only our students individual successes but our own successes too.

  4. Thank you Heather you are an excellent writer. My daughter also has a rare genetic disorder called Cri du chat, she is 5 now and amazes me everyday. But I also have to elevate my expectations and hope she can achieve what others say is not possible. Julie

  5. Pick a common object and give it attributes about parenting Fiona that you want to remind yourself of. Like a clock..when you se one you think something like: Time is limited so don’t limit FIona as I won’t always be there for her. Or if you see the leter “C” remember that Daniel can “see” and Fiona is capable of more.
    I find encouragement in how our brains don’t stop developing as children, thay are not static but keep developing neuron connections. https://www.udemy.com/blog/neuroplasticity-exercises/ So it is not too late for Fiona to learn & grow. (Regarding Daniel, I read a book, Thunder Dog: The True Story of a Blind Man, His Guide Dog, and the Triumph of Trust by Michael Hingson and his parents did not “baby” him but treated him like his brothers & sisters & he learned to get around like a sighted person by ecolocation.with no training but life and his parents not treatig him differently!

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  8. I just found your blog… It’s beautiful! And I LOVE this post. My one year old son has Trisomy 21, ad I have had a very similar reaction to that NPR story. And a lot of grief about how the world will perceive and limit him. I am working hard in the part I can control… My own expectations. And trying to share this story so others will understand how important it is that we not limit our own expectations of what our kids can accomplish. Thank you!

    • Hi Tanya, welcome! And thanks for reading. We’ve had wonderful teachers for Fiona, who have raised the bar even higher than I would have. I hope your little one encounters people like that, even as his momma champions him too.

  9. Thank-you, I have printed this one out. At the very least, I want to have it on hand to read to myself frequently and remind myself to practice holding up my highest expectations for C (it is really a practice, isn’t it?). At the most, I see myself making copies upon copies for all those who will be working with her as she starts her school career. You have said what I want to say to them in far more eloquent a fashion than I could. Especially since I usually end up crying in those kinds of conversations…

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