For the birthday girl

Today marks five years of life for Lucille May Shaffer. I can't even believe it! Chad has been saying all year that he can't believe she is going to be five and now she is. I often wish I could relive the moment I first saw her face. Since I had to have a c-section I was paralyzed from like the chest down or whatever, my arms were strapped down, and of course I was exhausted after 14 hours of fruitless laboring. But I remember looking over my left shoulder to see my sweet baby girl for the very first time. I very clearly remember a nurse announcing that she was a girl, because we didn't know yet. 

I also remember being extremely pregnant, so this was not long before Lu made her appearance, and Chad and I were driving home from shopping and eating somewhere. I pointed out how in a very short time the baby would be here and we would have all kinds of extra stuff to lug around with us. He was just kind of like it was no big deal, babies don't need much...little did we know just how much "stuff" this little lady would eventually need to go anywhere. And as she gets older, it seems like she just keeps needing more, instead of less. But I am thankful that the things she needs exist at all because they are instrumental in improving her health and quality of life.

The second half of this year has been especially hard (on my heart) since Lucy started having seizures. They are pretty well controlled with Depakote, and even when she does have a "big" one it is very small compared to how severe they could be. They last usually no more than a minute and are assumed to be causing no damage to her brain. However, when she started having them, I let a fear in that I had pretty much ignored up until that point. A fact that I had tried to not let control me is that a small percentage of children with Rett that die suddenly.  Rettsyndrome.org states:

"The factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility. Physical, occupational therapy, nutritional status or living arrangements made no difference in the incidence of sudden unexplained death. Other deaths have resulted from pneumonia."

And even though her seizures are controlled, I just began worrying anyway because Lucy also has difficulty swallowing and limited mobility. Both of these things are struggles we deal with constantly. I would by no means say the fear consumes me on a regular basis, but it definitely crosses my mind daily. And then sometimes it does take over and I am incapacitated by it for a very brief time, like an hour or two, and then I pull myself back together. But this is what seizures have brought to me. And so this year as we celebrated Lucy's birthday with a big party on Saturday and today with other special surprises and treats, I can't help but feel that every ounce of me celebrates especially that she has lived another year. Really, not a one of us is promised tomorrow and I realize that. I may not wake up in the morning. However, when a person also has a life-threatening condition, this just compounds the fear of what tomorrow may bring. 

Lucy and I have been gardening for some time now, usually in containers. And she asks to garden all the time, so for her birthday I had a vision of a raised garden bed that she could wheel up to in her wheelchair and have her very own garden. Chad and his dad built what I had in mind and we prepared it to be ready to show Lu on the day of her party. Lucy and I have been growing Brussels sprouts and two kinds of heirloom tomatoes from seed for a few months now and she finally got to plant them in her own garden!

She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":

All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:

And here she is surrounded by some of her best buds:

And finally being sung to:

It was wonderful to have so many people come to celebrate Lucy with us! We are always grateful that we have so many friends and family that care for us and love us. Before the party Lu and I made some homemade seed paper to give to her guests as a thank you for coming and then I asked her if she could tell me a message she wanted to give to her guests. I specifically did not say to thank them, to see what she would say and here is the finished product of Lucy's message and seed paper gift:

Chad and I are so proud that she not only could create a message, but that she said thank you on her own with no prompting from me. We talk a lot about good manners and I am glad it's sinking in!

And since today is Lucy's actual birthday I asked her what she might want special for supper and this is what she said:

So that is what we will have of course! 

Even though I worry, and each day has its own struggles, I am always grateful for every day we have together. I am grateful that Chad can support us so I can stay home and always be with Lu. I can't believe that five years have passed already. Each day Lucy continues to grow and amaze us with her persistence and grace at tackling this life that is hers for better or for worse. 

Happy birthday big girl! 

#icandomorethanrequest

A hash tag has been created for sharing pictures and stories on Facebook of AAC users doing more than just making requests. I posted a picture of Lucy earlier this week and it was the first time I've ever even used a hash tag. I'm not even sure if that is supposed to be all one word or two, but I'm going to type it as two. The idea is that while it is undeniably valuable and amazing for Lucy to be able to make requests, there is more to her and her abilities in using her Tobii and PODD than to just ask for "more". Admittedly, I LOVE it when she says, "I want Tinkerbell doll" or when she asks for a specific snack or to play with her Barbies or My Little Ponies. It makes my heart soar to know what she wants and likes to play with. But she is capable of so much more! She makes statements, asks questions, makes demands, tells us (most of the time) when something is wrong, and can answer questions. She tells people she loves them and greets them and tells them goodbye.  And makes requests, all in one day!

Before starting this post I looked back through pictures to see what pictures I had of things Lucy has said recently and look what I found:

She asked this while her great-grandparents were on vacation for a few weeks. We usually see them at least once a week and she wondered when we were going to see them next.

This was at supper. She is always ready for bed at supper.

This was about a painting she had just finished!

And this was from yesterday after we talked about Chad getting her bike out of the basement for her first bike ride of the year! I asked if she was talking about her bike and she confirmed yes with a head nod. Dad had not forgotten:

I am always racking my brain to think of things she might want to say, and what other kids her age might want to talk about. Her and I are always reading a Disney Fairy chapter book and the way the fairies greet each other is to say, "Fly with you" instead of hello. So just this week I added that to a page of greetings I have made for her in her PODD on her Tobii, in addition to what was already there, and she was tickled. She even greeted me with it when I sat down to feed her lunch one day. 

I love the idea of showing the world everything people who use alternative means of communication are capable of. These devices and books, and everything else people use are not just a means for relaying their basic needs and wants. It is the key to letting their true selves out for everyone to see and know. It is a slow, delicate process, requiring a lot of patience, consistency, persistence, and belief in the AAC user. But as time goes on and you see just what your child, loved one, student, or patient are capable of, it makes every ounce of effort worth it! 

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.