Tuesday, December 17, 2013

Believing in Girls with Rett Syndrome

When we first got a diagnosis of Rett Syndrome for Becca we did a lot of Internet searches trying to figure out what we were up against. Paula found a blog called Spirit Dances about a woman with Rett Syndrome named Karly. The blog is authored by Karly as her mother held her hand and helped her type on a keyboard. The posts are complete sentences, complete paragraphs, with a very large and diverse vocabulary.

When I saw the blog I discounted it right away. I'd read about how debilitating Rett Syndrome is, and there was no way this disabled person was writing all that. Maybe she was picking the first letter and her and her mom was filling in the rest -- maybe not even intentionally or anything, but there's lots of research examples of facilitators who in trying to help end up saying things from their own head rather than the individual's. I didn't say any of this in a comment on the blog or anything, I kept it to myself, but I definitely thought it.

I didn't know Karly (she has since passed away) so I'm really in no place to make a judgment call either way, but I've since learned why my attitude is wrong-headed -- mostly by being on the receiving end of some healthy skepticism about Becca's abilities.

Becca is reading words. She only knows 14 letters, but that's enough that she's independently read the words "bat", "bag", "fat", "leg" and "hen". Last week we were trying to come up with Christmas words for all of the letters she knows, and she thought all on her own of "elf" for "e". The next day she asked me how to spell "lion". She out of nowhere last month told us that she hates her car seat, and she told me a few weeks ago that I make her shower water too hot, then helped me find a better temperature. She can count to five and she has just started saying her own prayers at night when she goes to bed.
Hunting for a Christmas tree we all could agree on

If you've seen Becca in real life then those events will probably sound next to impossible. Becca can't talk or sit up or walk, she shakes constantly, she struggles to move her arms intentionally anywhere other than to her mouth and struggles to keep eye contact focused on much of anything. Most people would look at someone in her condition and declare those skills as far out of reach. And if we told you how we know she can do all of those things (because she told us she can) then you'd probably put us squarely in the same bucket I put Karly and her parents in before. I can't really judge you for thinking that way since I sometimes still do myself, but I can try to help you see why you (and I) should rethink assumptions.

I'm going to introduce two probably-new-to-you concepts. The first is called "the least dangerous assumption" and the second is called "presumed competence". They both have to do with the benefit of the doubt, and hopefully will help you see why it's so important for individuals with disabilities.

The least dangerous assumption is a perspective re-think. It's essentially the request to take your assumptions about a person's capabilities and think beyond to the end result of those assumptions. Let's say for example that twenty years from now someone comes up with a drug that completely cures all symptoms of Rett Syndrome. Which would be worse, hearing Becca say "I laid on the floor for twenty years watching baby cartoons. I tried to learn to read but nobody would hold the books still enough" or hearing her say "I know you tried to help me, and I did get a little out of it, but most of the time it was too hard to focus and I didn't learn much"? Henry Frost is a young man with autism who fought this battle, using typing to convince the school that he was capable of learning. The least dangerous assumption is the assumption about an individual's abilities that will cause the least amount of damage if in the end you find out you were wrong.

Presumed competence is related. It's the idea that an individual shouldn't need to earn the right to be taught, respected or spoken to. You should assume that an individual understands what you're teaching them or saying to them or about them, whether they can respond or not. Don't skip explaining things to Becca just because she looks like she's not listening. Don't skip her in activity time with the kids because she's disabled. When Becca responds with what seems like only half or a quarter of what you were told is her typical response, you should take it and believe that it was intentional. Take it the rest of the way. Call it a victory, rather than thinking "that could have been an accident". Presume competence. Don't ask her to prove to you that she has a brain in her head, that's not how you treat "normal" people. If a "normal" kid says "appow" instead of "apple" you don't say "well *that* kid can't talk." I won't lie to you, presuming competence takes a lot more work than you probably think. It involves getting over your own insecurities in addition to the child's, and re-assessing yourself again and again.

Honestly presuming competence has made all the difference in the world with Becca. Once we started introducing concepts and ideas to Becca that were beyond where everyone (including us) assumed she was, she took off. Her yes/no eye gaze didn't get really solid until she started picking from six choices of places to go (backyard, front yard, downstairs, etc.) -- and I'm betting that at least the first few times she didn't completely understand what she was picking. But we took it and ran with it and then went a few steps farther. We didn't know for sure if she'd keep up but she has, again and again. I love the phrase I found a few weeks ago, "we teach intentionality by assuming intentionality." Just as often we we find we're not teaching intentionality so much as finally trusting her enough that she feels she can rely on us for communication. Whenever we feel like she's getting stuck it's usually not because of her understanding, it's because we got sucked back into "you need to prove you know this before we move on" again, and once we fix our side she picks right back up. Will that last forever? We have no idea. But we've heard too many horror stories of girls with Rett in high school who are still working on identifying colors, and we just have to think there's something more stimulating for them than that.

Check me out, I can rock the wink like no other.
Becca's mutation (K135E) is not a common Rett mutation, so I don't know that we can really speak for a majority of girls with Rett Syndrome, but from those we've seen Becca is not on the "light" end of the Rett spectrum, and she is still so very much "in there". We have to believe that most girls with Rett are as much "in there" as Becca. I still wonder about Karly's typing skills (my bad, I know. Why do I worry so much about being "taken in" by an online exaggeration?), but I now believe she was capable of writing a blog, that she could read and understand and benefited from her method of communication. I think it's crucial that we surround our girls with people who believe in them, because I've seen how much of a difference it can make.

If you don't believe Becca can do the things we claim she can do, we understand exactly where you're coming from but please give our daughter the benefit of the doubt. If you want a girl with Rett Syndrome to see you as part of her life then get excited for her, believe that she did it even when there's not the evidence most people would expect. Someday in the future you will see how she has changed you as much as you have changed her, and that making the least dangerous assumption has brought you into a circle of trust that will change your life in significant ways -- regardless of whether anyone else in the world believes you or not.


  1. Dearest sweetest angel Becca!!! She sang with me through the entire song with the Primary in Sacrament meeting! I wanted to stand up and shout 'Can you hear her singing? Do you see how very proud of herself she is? Look how much she is enjoying herself!' I believe every word you say here, and I have so much to learn! I sure love you all!!! ;-) Cindy Johnson

  2. Beautiful. I look forward to trying to be better. Sure do love that girl. (And Cindy Johnson, I don't know you, but thank you.)

  3. I hope I didn't come across as critical in this post. I'm so very grateful for all the support we've received in caring for and working with Becca. Missy and Cindy you have both done great things for Becca and you both already understand better than most (aka me). I keep working at changing my perspective too, just wanted to share what I'm learning.

  4. Absolutely!!!!!! Brooklyn is included with her typical peers in third grade and is doing amazing! Keep up the good work Brian! It absolutely took surrounding her with people who believe and that has made ALL the difference!

  5. Hey Brian, I don't know if you even remember me or not (we served in cubs together), but this is a fantastic post. I also have a daughter with disabilities, though nothing as severe as Rett's. Thank you for your wise words!

  6. Hi Erin, I remember you. I think we're even facebook friends, I remember seeing your updates. I didn't know you had a child with disabilities, though. All kids are an adventure in their own way for sure :-).

  7. I totally agree with this post. My daughter Cristia Isabel is in 1st grade regular education. And she is surrounded by a team that believe in her. She is thriving and loves school, but not only that she sees herself like her peers. If you ask her if she can do stuff like them she answers yes. She doesn't know any different we are always looking for ways of including her.