Monday, May 2, 2016

What You Don't See

Last week Lu and I went to Lowes to buy some perrenial flowers for a little space we are creating in the yard to attract tiny critters. The day we went to Lowes was not an incredibly sunny day, so a little overcast, and the temperature was mild, probably not 70. A perfect day for outside plant shopping. But, in spite of those comfortable conditions, Lu gradually wilted over the half hour of time that we spent browsing around the garden section. When I say "wilt", I mean she gets sleepy looking, her head droops, her face gets pink. She just isn't very engaged in what's going on around her. So we went to check out and the cashier made a comment about how cool her "iPad" was. I politely told her it wasn't an iPad, but a communication device that enables Lu to talk with us. The cashier then very respectfully looked at Lu and asked her name. Lu didn't answer because she was wilting, and frankly because she isn't quite to the level yet where she easily or quickly responds to a direct question like that, and definitely not if it's being asked by a stranger. And so when she didn't answer, and I answered for her, from that point on, the cashier spoke no more to her. We checked out, and she helped us out to the car with our bags, which was nice.

Then, when I turned to Lu to unbuckle her from her wheelchair and put her in her car seat, I suddenly saw what that cashier saw: a severely disabled little girl who couldn't even tell her her name. She saw a little girl drooling on her bib, struggling to hold her head up, flushed from the mild spring temperature, and half asleep...and suddenly I laughed! I was so surprised by my reaction that I had to stop and think for a moment as to why I found that assessment so funny.  It's really not funny. It's not funny to be aware that sometimes when people look at my daughter, they think they see an empty vessel. I had this same feeling a few months ago while I was feeding Lu her lunch at Valley Dairy, and I could feel eyes on us at times. However, I thought to myself how ironic it is that people might just see me feeding her and think she is helpless, when they are not aware that she had ordered her meal all by herself with her Tobii, when the waitress asked her what she wanted. And, actually, we were at Valley Dairy because she had asked if we could go there. 

But back to the laughter. It is not funny that in split seconds Lucy, and other people who may have similar physical characteristics, are sometimes disregarded, based simply on their outside appearance. It isn't funny, but I guess maybe I was having a realization that made me feel so proud; an understanding that we know how much, much more is inside of Lucy than just what people see on the outside. And because we know that, and because we work to learn more and more each day, and we never stop helping Lu learn how to express herself, I know without a doubt that as she grows, she will learn how to let the world know what she's all about. She will make sure that even if she has saliva running down her chin, or her mom is feeding her, or her body is misbehaving, that people will know she is in there, and that she is not to be overlooked. It just takes a lot of work on everybody's part to make continuous progress in her communication abilities so she can let he world know who she is.

And here's two great stories to illustrate her current level of progress:

Last weekend we were having lunch with my in-laws and Lu said with her Tobii: "Can I please, straw?" Then, "I, straw". She hasn't used a straw in a long time, so we immediately began working again on her using one. We rigged up a straw with a one-way valve that we had from a few years ago and put a soft silicone straw from a sippy cup on it so it wouldn't hurt her mouth:

The next day, at supper, we were eating taco salads, and Lu ate about a quarter of her puréed salad, and then started making a face like something was wrong. I was trying to gather to tell me if she didn't like it, and she wasn't really responding, but kept looking distressed. So as Chad and I were discussing what we should do next, and if she had eaten enough, or if she needed some chocolate milk, I suddenly heard her say "Feet!" with her Tobii. We immediately looked down at her feet to discover that her right foot was stuck behind her footrest! We fixed it, and she happily finished her supper! The way Lucy uses her PODD on her Tobii is she has to select the word she wants to use, it doesn't speak it right away, it just goes up into her message bar, and then she has to choose the "speak message" button to say it out loud. She went through that whole process to tell us her foot was stuck. I don't know if it was her discomfort, or the possibility of not getting to finish her supper, or a combination of both, but she was able to get her point across right when she needed to. It was fabulous! 
I've said this before, and I'll say it again, and again, and again: I don't believe Lucy is an anomaly. I believe all girls with Rett, and all nonverbal people in general, can learn some form of communication. The key is how it is presented to them, and the beliefs of the people who are responsible for supporting them and their efforts. If their support system does not believe they have something to say, then they might believe that too. I know Lucy always has something to say. I know her head is full of thoughts, and hopes, and dreams, and probably a complaint or a gripe here and there. I want to hear them all! I get so upset when I hear another parent comment that they wish they new what their nonverbal child was thinking...teach them how to tell you! It is their right as human beings to be taught an alternative means of communication! 

We are so proud of Lucy all of the time for her endless patience with herself and others. I don't think she worries about how the world views her when they only see what's on the outside, because she knows her Daddy and I don't give a damn what they think either. We know what she is made of and we know she will let the world know too, by and by, as she can. 


  1. Well said. The kids and I volunteer at a nursing home, in the memory care unit. Some of the residents that are severely stricken with dementia cannot speak. I often wonder if they wish they could, or what could be done to help them do so. Communication is such a vital piece of what makes us alive. Love hearing your thoughts, as always!

  2. Ms. Shaffer, I'm a freelance writer living in St.Paul. Until about two weeks ago when I had left my radio on and awoke at about 2:30AM to hear a PSA on Rett Syndrome, I had never heard of it. Since then I have been haunted by it. As I read much of the source material available online, I'm exploring how I might approach a long-form feature for the lay audience. It's such a wrenching, cruel disorder striking the most innocent, but one capable of inspiring great love in those entrusted with their care. Outstanding blog. Have you stopped writing?