The Pity Smile

When we head out into the world, there is no missing us. I understand that. Not only is Lu in a wheelchair, but she has to have a chest harness in addition to the regular lap belt, or she would fall out. She needs to have her feet buckled in to keep them still, and safe. Then we add the big metal bar holding up a device that most people (oddly) assume is some sort of entertainment apparatus. Her PODD book generally hangs from the handle, and sometimes her feeding pump is clipped to the handle as well. And then don't forget her constantly flapping arms, the noises she makes as she holds her breath, and her sometimes very loud vocalizations. I get it. We are not going to go unnoticed when we venture out into public. What I wish could be different about our society in general, however, is the reactions other humans have to seeing a person with a disability.

I call it the "pity smile". I also completely understand that this type of reaction is 100% preferable to maybe a look of disgust, or annoyance, or hatefulness. I know. But what I wish others would understand is that WE (the entire community of people living with or caring for people with disabilities) do not want your pity. I have, for the most part, just quit even looking at people as we walk through crowded places, but then occasionally I accidentally do, like this past weekend. We had just finished a very nice lunch out with Chad's mom, and as Chad pushed Lu through the crowded restaurant to get to the exit, we could've been suffocated with the pity smiles. This is what I feel that those smiles say:

"Oh how sad." "Look at that poor little girl." "Look at that poor family. I wonder why that happened." And so on, and so forth. To people who have never experienced this type of reaction from others, you may think that I am being overly sensitive, making assumptions, or just being silly. But I promise you, I have seen these looks enough times throughout Lu's short life to recognize them for what they are.

Meanwhile, lunch was a success, Lu ate well, and we are all smiling and happy, so why feel sad for us? Believe me, no one, NO ONE, knows the sadness that comes with a disability as well as the people affected by it. But, what I wish would change about our society is that others could shift their thinking to view the successes, and strength, and possibilities of people with disabilities, instead of just feeling pity for them.  I don't want Lu to realize at some point, if she hasn't already, that people often look sad when they look at her, people that don't know her especially. Not everybody delivers the pity smile of course, but sometimes it can just be very overwhelming and frustrating. 

In general, the societal view of people with disabilities is that they are "less than." One of the biggest reasons that I write this blog is to share how Lu defies that view everyday, in every way we can manage. I write to present an alternative view of what life with a disability, or multiple disabilities can be, and that no one needs to feel sad for her or us. I would challenge our society to instead of focusing on the things they see that make them feel sad, to try and look past all of that to find the positives. Like, that even though it is clearly quite an endeavor, we are still out eating in a restaurant, or shopping for a new dolly, or going to the zoo. It is just what I wish for, and as long as we keep proving society's view wrong, maybe someday more people will look at us differently.

Anxiety in Rett Syndrome

When you look up Rett Syndrome online, or anywhere else, you will find "anxiety" in amongst the many severe symptoms of the condition. In the past three years I have let that float through my mind as a very vague issue that I didn't really feel we had encountered yet and I wasn't really able to think specifically about what Lucy might become anxious about. In general, I thought she might get anxious in perhaps social situations where she feels like she sticks out due to her differences. Maybe she might feel anxious about going new places, or making friends-the typical things kids and people in general are nervous about. I guess I just thought it might be worse because of everything else that comes with Rett Syndrome. However, over the past month or two, Lucy has clearly told us and shown us two very specific things that have started to make her feel a great deal of anxiety.

First, since her seizures have started, and she has started taking Depakote, her tremulousness has at least doubled, if not tripled in intensity and frequency. Her body shakes, twitches, jerks, and trembles. At times I need to swaddle her like a baby in a big blanket to help her body calm down. Most times though just a small weighted lap pad put over her arms and chest and tummy, or over her legs, and the use of soft arm braces can help her body to be still for a bit. A squeeze and a hug just isn't cutting it most of the time anymore. We tried adjusting one of her other meds to see if it helped decrease the movement, but it didn't, so it's just what she has to live with now. 

This has had a negative effect on both Lucy's ability to eat safely, and her stability during walking practice. When it comes to eating, sometimes I can barely get the food in her mouth, even though I am constantly stabilizing her chin gently with my hand. And when her mouth does manage to open, and she is still enough to let the food in, her mouth has seemed to resort back to not always knowing what to do with that food. Sometimes it just sits in there. But, what is most scary is that all of the excess movement also includes her tongue movements, and that, combined with breath holding has been making Lucy choke much more frequently on her food. When I say "choke" I don't mean we have had to give her the Heimlich yet, but she just coughs, and panics, and turns red. I have to get in there and scoop food out pretty regularly which is a risky endeavor for my fingers. But one night at supper after having such a choking episode, Lucy said with her Tobii: "understand, nervous" and we asked if she meant did we understand that she was nervous about eating and she said nodded "yes". 

A few days later at breakfast after she had choked again Lucy said: 

"Hate, nervous, cry, hate, eat"

So I scaffolded to her food pages and asked her to tell me what foods are easy for her to eat, what foods do not make her nervous, and here is the list she created:

A few notes on her list:

1.) All of those things are her favorites, and foods she tends to be most successful with, except maybe popcorn shrimp. She does love it, but it is not consistently "easy" for her to eat.

2.) "Candy" primarily refers to Reese cups. She LOVES them. 

3.) When she said, "everything, hot"  I just kind of acknowledged what she said and we moved on, but then when she said, "I need some help, food, cold" I knew that what she meant was that foods that are warm or hot are easier for her to eat than things that are too cold. She has never liked things that are too cold. No Popsicles, only ice cream with a hot sauce on it, even yogurt from the fridge is too cold sometimes. So she was stating that cold foods give her trouble, and that has always been 100% true.

4.) I know all her favorite foods and what is easiest for her, and even the "easy" foods are giving her trouble lately, but I wanted her to be able to have some control over the situation by helping to decide what she feels most comfortable eating. 

I like Lucy to try new things and she knows that, but I also told her that I will try even hard [than I already do] to just give her the foods that are easiest for her. So, the vagueness of Rett Syndrome-related anxiety has lessened in that now we know, in no uncertain terms because she told us, that Lucy is nervous about eating. Eating causes daily anxiety for her. 

She hasn't said yet that walking makes her nervous, but it is obvious that it has started to be very difficult for her, due to the tremulousness. Her stability has greatly decreased, as has her enthusiasm for working on walking. She has never been fussy or resistant to practicing standing and walking before, but lately there have been some tears, and a lot of protests on her part. However, on a few occasions she has actually requested to practice walking saying, "I'm telling you something, it's about now, choosing, walking" so we walk. But her anxiety is still present, she is just choosing to try and work through it. I can tell she is afraid she's going to fall, even though I am holding onto her, and the shaking makes the already arduous task of putting one foot in front of another just that much more harrowing. 

When I was little I had some pretty bizarre and irrational fears such as we were going to drown when we flushed the toilets, or the car doors, even if they were locked, were going to fly open while we drove down the road. They were just crazy little kid fears that were not really going to happen. But Lucy has to be afraid of EATING and WALKING, things no one should ever have to worry about. Shouldn't we all just be able to eat and walk without a second thought? Of course we should, but she can't. So now I know two very specific causes for anxiety in people with Rett Syndrome. Now I know.

Three little words...

Lu had a cold again for three weeks and it was miserable. In the middle of the cold was her Daddy's birthday. Throughout the day I modeled for her in her PODD on her Tobii how she could wish him a happy birthday when he came home from work. She slept most of the day and just didn't feel well, so I wasn't sure she would be up to wishing him anything. Well, when we sat down to supper, I reminded her in a whisper what we had practiced. She said with her Tobii that she wanted to use her book- her paper PODD book. As I navigated through the book with her, after each choice she made, she would turn and look directly at her daddy. Her message was, "I love you"!  Chad and I both teared up for the obvious reasons, but also because she has very seldomly said this to anyone. We tell her we love her a thousand times a day of course, but I never ask her to tell me that she loves me, or ask her if she loves me. I know she does, and I know she will tell me when she is ready. And here she was ready to give her Daddy the best birthday present in the world! 

What was also wonderful about the whole exchange was that she didn't do what we had practiced all day- she wished Chad a happy birthday in her own way, and I love that about her so much! Not only that she has the spirit to do things in her own special way, but that she has the knowledge and ability to express herself however she chooses. When we are talking and I am asking her a question about something, I never worry that she is just answering what she thinks I want to hear, because she just doesn't do that. She wants us to know what she thinks and feels- her own genuine opinions.

So, since Chad's birthday, Lu has been very generous with her "I love you" messages. About a week later she told my mom and I that she loved us while we were at the table feeding her lunch. Then one day when just Chad was home with her she said:

And then one morning at breakfast she told me she loved me twice within the meal! 

Then at supper a few nights ago she said this to me:

Which is great, because I might tend to be a little silly.

So, without asking, with no pressure, Lu has finally started telling us she loves us! With both her book and her Tobii, just whenever she feels like it! It is amazing and I am so grateful that she has the ability to express her love for the people around her.