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. 

February 27, 2012

Tomorrow will be three years since we found out Lu has Rett Syndrome. When Dr. Coffman called and told me the news, all I said was, "Okay." And he said, "No, it's not okay. You don't have to say that." I feel like I have a weird thing about not being able to react in the way people expect me to in the moment that they expect it, and so what else was I going to say but, "Okay." And although I was floored by what he was saying, and overwhelmed, and devastated, and all of those things, I think I also meant, "Okay...now what? What do we do to help her? What's next?" But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you.

Now, I firmly believe that if I am going to write a blog about caring for a child with Rett Syndrome it is my absolute duty to share the good, the bad, and the ugly, and I think I do. I have written about many difficulties we face each day. I have written about how hard of a time I have at times just contending with the symptoms of the condition, and all other sorts of not so cheery things, but I do my best to also share the wonderful, amazing, breathtaking aspects of being Lucy's momma...because those things far outweigh the dreary things. What would doomsday Dr. Coffman think about that? We have found more good than bad in the aftermath of receiving this diagnosis. Our life is different, and hard a lot of the time, but most definitely not ruined, not even close. 

This was taken exactly three years ago today, the day before her diagnosis:

And here she is today, a big, beautiful, almost-five-year old girl! 

And here is a Valentine she made with her OT. She gave it to her Daddy.  Oh, and used her Tobii to spell her name herself and tell the OT what order to put the letters in!

And here she is choosing flowers for our garden this summer. Some of her choices include a white Bleeding Heart, a bright orange coneflower, and some "Strawberry Candy" colored day lilies. She used just her yes and no head movements to make those choices. 

And just one more: here she is playing her tambourine at the supper table, because she asked to.

So, Lucy is spelling, choosing, asking, playing music, and still smiling. I have already said many times before that I will never, ever, ever forgive Dr. Coffman for the out-dated, negative, and hopeless information that he gave to us, and I will certainly never ever forget it. Here we are a mere three years later and Lucy has already surpassed what he indicated we should expect from her life a zillion times over. And again I say, it's only been three years! What will the next three years bring? And the three after that? And after that? All I have to say is, look out world, because here she comes!

My Baby Asparagus Patch or "Being Zen"

Sometimes people, other parents particularly, will ask me what we have done to assist Lu in continually making progress as a competent alternative communicator.  I generally share a summary of these two blog posts that I have written on that exact topic:

Just Do It
The Hard Way

I often get a feeling though, that my responses are disappointing. Perhaps others think there are some magic phrases we use that make Lu communicate successfully. Like there is some secret ingredient to her success, a silver bullet to just make it happen. But there isn't. We just do our very best to maintain consistency, make sure others do the same, and just do what we were taught. Over and over I say, "It is not work, it is her voice", "no pressure", and of course, "Be Zen". These are not my original ideas as I have made clear many times, this is what we were taught at the PODD training. This is why she succeeds. 

This week I have been thinking especially about the mountainous task of "Being Zen".  I truly have no actual idea about what "zen" means in the context of Buddhism or anything like that. I just understand that Linda said Gayle wants people to "Be Zen" in terms of staying calm about the progression of the PODD and not to worry about it ever being a perfect process. That I get. When I was thinking about this earlier in the week, a passage from one of my favorite books popped into my head. From the book, "Animal, Vegetable, Miracle" by Barbara Kingsolver:

I included the whole passage for context, but I was mostly thinking of the part that says, "A too-young plant gets discouraged when you whack off its every attempt to send up new shoots in the spring, abuse that will make the plant sink into vegetable despair and die."  Bear with me while I make these connections. To be Zen, in reference to using the PODD means not getting worked up when things don't go perfectly. We as the smart-partners are not always going to read the communicator's signals correctly. We are not always going to model eloquently, or at the right level, or in the necessary amount. We need to be gentle with ourselves, this is a new language to us too, after all. But even more important than being gentle with ourselves, we need to be beyond gentle with our children. Not every single thing Lu says with her PODD makes sense. I don't always understand her and even after trying to clarify with her, I still might not understand what she is trying to say, and that's ok. Like a gardener would do with a tender baby asparagus, I let her be. I don't insist that she grow too quickly so that she can become what I think or want her to be.  Yes, I want her to be able to fluently communicate right now, or yesterday for that matter. But the secret is to not squash her tender shoots.

No matter what Lu is saying, regardless of whether it seems confusing, or whether she is saying the same thing over and over, I just go with it. I comment, ask questions, and generally just validate the fact that she is communicating with me. Just because it might not be how I think she should be communicating, I have never tried to "whack off her attempts at sending up new shoots." Even when she is just exploring, that's essentially what she is doing; putting her feelers out, trying out her linguistic legs, and then, most importantly, waiting to see how the world responds to her. I think she is successful because our response has always been to respond with support, and patience, and to let her language grow without being too hasty to critique it, or trim it.

Nearly three years ago a doctor basically told us Lucy would never do anything, and so to me each and every word that she says, whether it has a clear intent or not, is amazing. Her body fails her while her mind perseveres. In the midst of seizures, tremors, breath holding, and ceaseless hand flapping, Lu might say, "I want, Barbies" or "I don't like this, crazy" or "Let's go, visit, Bernie, Dr. Sasha, Pappy, Tammy Sue, Dr. Sasha, Dr. Sasha, Dr. Sasha" and it all matters to me. Sometimes she goes to the animals page and says, "pet, baby, cat, Finn, the fish, the fish, the fish, pet bed, etc" and I don't know if that means anything at all, but I keep talking to her about what she's saying. And then other times, like one morning this week, she might say, "I think it's, cool, favorite, something to eat or drink, we, toast, hot, crunchy" . She was telling me that the toast I made for her with cream cheese and jelly is her favorite and then described it. And yesterday she said, "I don't like this, silly, angry, angry, pain, on, my, thigh". So I checked her thighs and legs and in the end she said it was actually her shin that was hurting. Also this week she said, "let's go, picinic, kfc" with her Tobii, and with her book she said, "thought, fun, exercise" in reference to playing in the snow. But in the same week, she has probably gone to the health section of the PODD on her Tobii and made a long string of words about appointments, doctors, slings, medicines, etc, with no clear intent, but just to explore. She likes to do the same in the transportation section, and the weather section, but that's how she'll know where words are when she is really looking for them. It's fine. It doesn't mean she is failing. 

I think I've said this before, and I'll say it again now, and I'm sure I'll repeat it in the future, but I don't believe that Lu is an anomaly. I believe all girls with Rett can communicate like she does, it just comes down to how she is taught, the support she receives, and the frame of mind from her support system. The assumption that she CAN do it, in addition to the belief that communication is crucial for children who cannot communicate in the traditional way are both ways of thinking that are indespensible on this journey. It isn't enough for our daughters to have access to communication just sometimes. And it's not going to work if we try to force their progress into a shape that we want instead of letting it just be what it is, all the while modeling proper language that they will inevitably pick up on when they are ready. We just need to try our very best to be patient, and positive, and confident in the process. With that support at their backs, our daughters will talk to us when they are ready. 

Sled Riding!

Yesterday I ran up to the little local store and the lady who owns it is so sweet and always asks about Lu. Yesterday she said, "What's new?" And wow, was I delighted to say, "Nothing!" Life has been pretty uneventful for the past few weeks and it is a relief! All I had to report was that we had ventured out to try sled riding earlier in the day, for the first time in almost four years and it was fun! It was exhausting, and hilarious, but super fun! We just have a regular sled that Lu could not sit up in on her own, so Chad, much like a sled dog, pulled us around the yard. He was a real Hulk about it too! Lu and I were pretty impressed. And then we made a path down a slight incline and went for some "downhill" rides. Lu and I even crashed once and she seemed to think it was okay and even a little funny! Finn had a fun time also dragging his leash around, unencumbered by me bossing him around. 

Here's some pictures from the good times:

But then of course didn't Lu wake up sounding a teeny bit stuffy this morning. Hopefully it's nothing. I am fine with nothing being new around here for awhile longer!

What might have been

I let some sadnesses simmer pretty close to the surface, but one sadness that I keep buried deep, deep down is my heartbreak at not having any more babies. I know, it's not like it's a rule that we couldn't, but it's just a feeling in my gut that tells me I might not be able to handle it emotionally.  But man, I really wish Lu had a brother or a sister sometimes.

A few days ago a Facebook friend of mine whose daughter has Rett posted a picture of her daughter and her daughter's twin brother playing dress up and just looking silly and adorable. That night I dreamt that I was searching for some definitive answer regarding the safe amount of weight a pregnant woman can lift. In my dream I just kept thinking, "Is it 42 pounds? Could it be?" Like that was the very most important thing that would need to be sorted out if we were to have another baby.

And then yesterday, I started feeling very sad that Lu doesn't have someone to play with all the time...someone more fun than her adult parents I mean. I think that missing out on typical play and pretend is one thing that I have never been able to reconcile with. We do our best to play and be fun, but it simply is not the same as Lu being able to use her hands and manipulate her toys. Or use her voice to make up stories and voices, and exercise her imagination out loud and physically. It's just not the same and there is no piece of equipment or adaptation to make it truly authentic. So, last night, out of nowhere, right before bed I was consumed with regret and grief that we have not created a sibling for Lu. My tears began as sadness for Lu and despair that she might be sad, or bored, or missing out. Now, before any anti-homeschoolers jump in with protests that she could play with kids at school, it just isn't that simple. When children that love her and want to play with her are here, even they don't know what to do and seldom include her. She can't follow after them as they scoot around, and she can't do what they do without me helping her, or showing THEM how to help her. In the end it all feels very awkward and forced, and maybe not a ton of fun for anyone.

But...if she had had a sibling that knew her and loved her, they would've known how to play with her and just "be" with her, like we do.  However, in the almost five years since Lu was born, it has simply never felt like we were emotionally, mentally, or logistically prepared for another child. Nobody's choices are right or wrong. I'm happy for people who have been braver than us and made babies after their child with Rett was born. The obvious reason for not doing it that I think Chad and I agree on is just HOW would it work? How?! I don't know how I would even manage to be pregnant and care for Lucy let alone what would happen after a baby was born. I talk about her needs all of the time, but unless you spend a day caring for her, a person cannot truly understand how all-encompassing her care is. Nothing happens in her day without me (or Chad) doing it for her. How on earth would I also take care of a baby, who would also need me for every single thing that happens to it for at least a few years? 

Awhile back I mentioned to my friend, Ann, that we were contemplating the possibility of another baby someday and she said such a sweet and kind thing. She said, "Well, I'm sure that if it's something you are thinking about then you will find a way to make it happen." Yeah, I probably would. I would figure out how to care for two children. So, like the layers of an onion, I'm peeling back the reasons why I won't ever have anymore babies and here is probably the truest, most critical reason: it terrifies me. The prospect of creating another human, growing it inside of me, giving birth to it, and thinking everything is fine just about sends me into a panic attack. However, at nearly the same time I feel the terror, I long for the opportunity to have the whole experience just one more time. Now, not to sound sexist, but I feel like only other women and mothers can understand what I mean when I say that the description of "longing for" the chance to be pregnant again is a gross understatement. It is so, so much more than a longing. It is more like a heartbreaking, gut wrenching, primal feeling that brings tears to my eyes instantly which can easily turn into sobs if I let them. I guess part of it is logically my "biological clock" and the fact that I am nearly 34, but that's not all of it. 

I just want to create another human as amazingly awesome and perfect as Lu, and in turn a sibling for Lu to love, and who will love her like no other child could. But...when I think of being pregnant, one of my most vivid memories of Lu in my belly is of sitting on the couch of a family my partner Joe and I were working with when I was a Family-based therapist, and everybody in the room could see her moving around in there. As I write this I wonder if it was the day my water broke and that's why I remember it so clearly, but then what I think is how I just might not even be able to contemplate what it would be like to have another baby in there, and watch it move around, but this time be terrified that something is happening in there, unbeknownst to anyone, that will make that baby's life hard too. Chances are very slim, yes I know! I know better than anyone who might make that statement to me, but I also know of families where things did happen twice. Where a second baby also had a random condition caused by a spontaneous mutation in a chromosome. It happens. And when you are a family that thought, just like anyone else, that surely everything would be fine, and then it wasn't, it's a whole hell of a lot harder to believe that it certainly couldn't happen to you again...because it could. And honestly, it's not the prospect of having another child with special needs that terrifies me, we are pretty adept at that part. It's the sorrow, and the grief, and a second set of broken dreams for a child that is going to miss out on so many of the typical things humans get to experience in life that I fear the most. These are heavy things to carry around, and I just don't think I could carry anymore. 

But, the fact of the matter is, in spite of all of this, I still get into a sadness every once in awhile about the baby I wish we had created, or the baby I wish we still were going to create. Chad and I love being parents. Lucy is our world, and the light of our life. I just assume another Baby Shaffer would only make our lives even more full of love and happiness, but the confidence in procreation that people take for granted each day has been stolen from me. Everyday, millions of women find out they are pregnant and they instantly assume everything will be fine. I have lost that faith, and I feel robbed. 

I know this was long, and sad, and gloomy, and I don't even care if nobody reads it, or if anybody cares for it. It just made me feel better to try to express the agonizing conflict I have in my heart about making babies. I'll get past this sadness, like I have in the past, and I'll cram it down deep inside of me, and hold it there firmly, until something else comes along that loosens my grasp on it and let's it float back up to the surface.