2nd Annual Shaffer Halloween Bash

Last year we started a tradition of having a little Halloween party for Lu and her pals so she can enjoy Halloween without the usual trick or treating part. Being that we live in a very rural area, if we wanted to take Lu trick or treating it would be an agonizing process of getting her in and out of the car and either awkwardly carrying her to the doors or getting her wheelchair in and out over and over...plus she is in bed by 7:00. So, trick or treating just isn't a super feasible option for us. And of course she wouldn't be able to eat most of the "treats" that she would get anyway. So, we have a little party so she can dress up and see her friends dressed up and eat snacks and have fun.

Lucy's shaking episodes have been making her fall asleep afterward for the past week and unfortunately she had one about ten minutes before party time. She slept for a little bit, but we were able to wake her for the party. While we were eating she said on her Tobii, "I don't like it, it noisy". We talked about how parties are usually a little noisy and I reminded her of how excited she had been all morning for the party. She wasn't crying or upset, and was actually smiling, and eventually it got a little quieter so she seemed ok.

Lucy has recently become a big fan of Tinkerbell from watching the Tinkerbell movies we borrowed from the library, and when I asked her if she wanted to be Tink for Halloween she enthusiastically nodded yes!  I found her this adorable costume at Kid to Kid:

I made a homemade Peter Pan costume and Chad was a homemade pirate:

And all of her sweet friends came to be with her:

I had also decided the night before that we would play a version of charades where we would be playing fast and loose with the rules, like the only rule was just don't say what you are trying to be! Chad and I came up with a bunch of Halloween characters and things and then I put them all into Lu's Tobii. I included them in a blank page within "special events" in her PODD because that is where all of the holiday words are. So this way she could guess along with the other kids. And in the morning I was showing her the page and telling her what we were going to do and she kept choosing Frankenstein over and over again, so I asked her if she wanted to act out Frankenstein for everyone. She said yes, so I changed the Frankenstein button to say this:

So when she activated it, it wouldn't say Frankenstein, and then we tried to walk like Frankenstein. When it came time to do it in front of everyone, I gave her a little time to activate it, but then I did it for her. When she is in front of a group like that I always worry about her feeling too much pressure and it being even harder to do what she wants. So I activated it, she did her act and someone guessed! Then a few minutes later she activated it on her own! It was great! 

What was also great was just the whole party in general. I don't know if people realize how much it means to us that they come and participate in a Lucy friendly way. We just feel so grateful to have an amazing group of friends and family that support us and love us and join us when we need to do things differently. We take Lucy out into the world all the time, but sometimes we just like to bring the world to her. Instead of figuring out how she will fit into what we want to do, we make everything fit around her. She enjoyed baked beans, Mac and cheese, and Reese cups for lunch, some of her favorites. We played a game pretty much designed with her in mind so she could actively participate, and we brought everyone to her. Sometimes it just needs to be like that and we are lucky to have so many people in our lives that understand that. 

The Hard Way

Last Sunday morning began like any other morning. Lu had her feed, watched cartoons, and was in a fine mood. When we brought her out to the table for breakfast (chocolate chip pancakes!) she got very upset. Tears, quivering lip, scrunched up face, heart breaking cries...the whole works. I persevered for a few bites of pancake, which she ate, but her sadness continued to increase in intensity. I asked her to use her PODD on her Tobii to try and tell us what was wrong. When it opened she immediately said, "I want, cuddle".  I took her over to the couch and after about 10 minutes of cuddling this is what happened:

And she slept for over a half hour, which is a long nap for Lu. We then returned to the table, Lucy full of smiles, and ate our reheated pancakes. At this point, it seems like a simple enough thing that happened: I asked why she was crying, she used her Tobii to tell me, and then I fixed it. But it isn't simple, and the process to getting here, to this point, which I still view as a very beginning point, has been anything but easy. 

The PODD system itself is quite a process to learn.  It is an awkward feeling at first when you begin to carry the book around everywhere with you, especially because you feel like everybody notices. I felt nervous and self-conscious.  It is hard to "Be Zen", like Gayle Porter, the creator of PODD encourages you to be, when you are a nervous wreck about making sure you model enough to teach your child how to use the system. It can take a long time for a child with severe apraxia, such as children with Rett experience, to have a reliable yes and no head movement. 

Then...we decided to begin the process of acquiring her Tobii. I contacted our local sales rep. We did a trial of both the Tobii and the Dynavox eye gaze system. Our early intervention speech therapist wrote out a long, and in depth report on how well Lucy used the Tobii. We submitted everything. Our primary insurance approved it right away, but Lu's secondary insurance, her state insurance, stubbornly denied it over and over. We got it anyway by stating we would pay any part that the primary wouldn't. Luckily we didn't have to pay anything. And that was all just to get it! I taught myself to program it, to make pages, games, and books for Lucy. With the help of Linda Burkhart, our PODD trainer, I figured out how to get the best version of the PODD on the Tobii, and it was a whole different piece of software that I then had to learn, and figure out how to program those pages.

 And those are all parts where Lu wasn't even involved. None of that included actually teaching her how to use these systems. We have been so fortunate to have wonderful speech therapists throughout this journey, first my cousin Danielle who worked with Lucy three days a week for two years, and now our therapist, Roxann, through the intermediate unit.  With Danielle we started from nothing and Lucy learned to make choices, to use her head to indicate yes and no, and then began to learn to use the PODD. And now with Roxann, Lucy has the basics down and is learning how to actually use language.  

I model language to her all day with both her paper PODD book, and on her Tobii, and of course just by talking to her all day long. We always make sure she has one or both with her no matter where she is. Our old pt gave us a mount for on her wheelchair, so her Tobii can always be with her when we are out and about. In her Tobii, there are many places where she can say she wants to use her book, and in her book she can say she wants to use her Tobii. And, I can get almost any information from her with simple yes and no questions as well.  

One of the most important things I took away from our PODD training was that the PODD is not work, it is Lucy's voice. I have said this over, and over, and over again to anyone who has needed to hear it, and I believe that keeping that attitude always in the front of my mind is what has made Lucy love it so much, and what makes her excel at using it. It is hers. She can use it or not. We don't "practice" using it, or ever make her use it. Look at her face in this picture below. We were adding items to lists in her new PODD book which has 64 pictures per page.

She just cares so much. She knows it is all for her, all so we can know her and know what she has to say.

But, it is hard. I will never deny that there are days when I drop the ball and maybe don't model much. I will also never deny that there are days, and times of the day, where it all just exhausts me. On top of all that goes into Lucy having meaningful communication, then we add her wide array of equipment that she needs just to have her body positioned safely and comfortably. The next time you witness a child just standing and talking, or even yourself standing and talking, think of this picture:

You can see extra wide shoes to go over special braces that are needed for buckling into a less than tiny standing frame. Then, her Tobii, mounted on the rolling floor mount that is so weird and awkward I've almost made a habit out of banging my toes off of it. All of this dragged back the hall so Lu could stand and talk to me while I put laundry away. It totally sucks, but I do it because she needs it. She needs to stand, she needs to stay strong, but even more importantly, it is her right as a human to be able to communicate with me whenever she wants to, and so that includes her communication system always being available to her. 

I just feel so strongly that all humans, regardless of their abilities, have the absolute right to be able to communicate with the world. "They are nonverbal" should not be the end of the sentence. That's just not all their is to it. Yes, I can generally tell when Lu is hungry, tired, needs to poop, is bored, etc., but that is not exactly rocket science, that's just being a mother. I would never even dream of saying that's all I need to know about my daughter, and I don't think any other parents should have to settle for that either. In the short time we have been in this world of a Rett Syndrome and learning all their is to know about it, what I have noticed is that there might be a lack of aggression on the part of speech therapists to obtain actual, functional, robust communication systems for children who are nonverbal. Not in our personal experience of course, but in other parents I have met. I did a training on Rett at our school district's paraprofessional conference last month, and in the two sessions I had, there were a handful of aides who worked with children who were nonverbal, and not a single one of them had a communication system of any kind! NOTHING! 

In my opinion, it is unacceptable for a human being to not have a means of communication. That is just my opinion of course, which I can share because this is my blog. It is also my opinion that communication systems are lacking in children's lives because it is hard work. Lucy's speech therapists and Chad and I have busted our butts, as I described above, for the past two years to get her to where she is now.  And I say all the time that this is just the beginning for her, and I imagine that in not too many years, she will be able to use her Tobii as fluently as if she were using her mouth. I believe that with all of my heart. I believe it is our right (and obligation) as parents of children who cannot communicate in the typical fashion to not just request that they be provided with alternative means of communicating, but that we demand it. It is their right. "Communication is the essence of human life..."says ASHA, the American Speech-Language-Hearing Association. I've shared the entire quote before, but that is the part that always pops into my head. Lucy deserves everything in life that all other humans get to enjoy automatically, even if it requires huge amounts of effort on the part of everyone around her. She just deserves it. 

Every Single Word

You know, I wonder if people who read my blog ever think, "Ok Julie, we get it, Lucy is awesome, and she talks to you all the time!"  But what I really want others to understand is that Lucy talking to us, communicating with us, and sharing herself and her personality with us NEVER, EVER gets old! Once a person [doctor] tells you there will be nothing your child can do, she will basically be a vegetable, and then all day every day she proves him wrong, you never forget what he said. I am never less amazed, or delighted, and I am always thankful every single time she talks to us. Even when she's just exploring and "babbling" by saying random words, she is talking! That might sound unrealistic, yeah, sure Julie, you cherish every word that your daughter utters all day long...but, yeah, I really, really do. 

In the past couple of weeks Lu has been developing a little of the "mine" attitude that children go through and we are loving it! We talk to her about sharing and not being greedy, but at the same time, it makes our hearts melt to have Lu doing anything "developmentally appropriate" such as claiming everything as hers. She loves chocolate no-bake cookies. I don't understand why they don't make her choke, but they don't and she wolfs them down.  I don't make them because my Mom makes them pretty often and sends some down to us. The other night before supper I brought some in and showed them to Lu and said Grammy sent some of her favorite cookies. Well, after supper, Chad opened the container to have one and Lu immediately said, "Mine! Mine!" with her Tobii. It was adorable! And so unexpected! We reminded her that Grammy sent them for everyone and we would share them. Then, a few nights later, also at supper, Lucy said, "I want, mine channel, mine, mine, channel" or some similar combination of those words. And she seemed to be looking at Chad. I asked if she wanted to watch her channel when she and Daddy watch cartoons, and she emphatically nodded "yes"! 

Chad and I tell Lu all the time if she thinks of anything in particular that she wants for supper to let us know and one morning she said, 

Needless to say spaghetti was served for supper that night and Lu and I made a homemade apple pie in the afternoon to have for dessert. One day last week I made a pageset up in her Tobii with some fabric choices from the armbraces.com site to see what Lucy might like for a pair of arm braces she has started to need. Immediately, a pattern caught her eye, and she repeated it over and over, even after I encouraged her to explore her other options, she still constantly came back to that one choice. After some time for Lu to look at all of her choices I asked her which was her favorite and not surprisingly she chose her first choice. She knows what she wants and is really starting to be able to tell us more and more, so she doesn't have to just settle for whatever I or anybody else chooses for her. 

Yesterday morning Lucy said:

Why, yes, yes we do, Lu. Perfect observation.

I cut my finger badly two week ago and for like a half hour it just wouldn't quit bleeding. When I finally got it under control Lu and I sat down to eat lunch and she said with her Tobii, "Are you alright?" That us all one button she can choose. She might want to hog all the cookies, but she still has compassion and cares about others which to me is one the most important character traits to instill in a child. 

And last night at supper, I told her she could have [one of Grammy's] cookies for dessert and then chad reminded me that we also have ice cream and hot fudge that she could have. I said to her, "Or you can have ice cream if you want." She said with her Tobii that she wanted to use her book. Right now Lucy is transitioning between a 20 per page book to a 64 per page and when she says she wants to use her book, I give her the choice of which she wants to use. She has mostly been choosing her new book, but last night she chose her old book and said, "I do, want it". I asked if she meant she wanted the ice cream and she very emphatically nodded "yes"! 

I said to Chad last night that I believe eventually Lucy will use her alternative communication system as naturally and fluently as we speak with our mouths. I think getting girls started as early as possible is critical to helping them understand that this is just how they do it, and it becomes the norm to them. It often occurs to me, kind of surprisingly at times,  that Lucy doesn't talk with her mouth. We talk to each other so much all day, that I seldom dwell on her being "nonverbal".  Even when we might be on the couch, in the middle of a crying episode where she is so distraught that she won't even look at her book or her Tobii, she will still often answer my yes and no questions to determine if she knows what is making her cry so I can possibly help. Does Lu use her mouth to speak to us, aside from the occasional, no, yeah, ma, da, nope she doesn't, but does she let the world know who Lucy Shaffer is anyway, uh yeah, all day, every day!

"I feel tired"

The title of this post is in quotations because it is a quote from Lucy...her first grammatically correct complete sentence! And this she said with her book, not her Tobii! I am so incredibly proud of her I couldn't shut up about it all night! The day has barely begun and I feel like I still have a lot to say about it! Learning to speak for a typical child is a natural process. Our brains naturally allow words to be formed and to come out of our mouths. Because that is so relatively simple for most, then it is just a matter of learning the order that words should be put in and this comes from listening to others and imitating. Now of course I'm not a speech therapist and I'm sure there could be a much more accurate description of that process, but my point is, while most humans learn to speak with little trouble and just slide through this natural process, it is just so much more complicated for a child who is nonverbal.

First, Lu has had to learn to control her head enough to indicate yes and no with it, and she does. Then she has had to learn how the PODD system works, and she did. I'm sure she doesn't know what every single symbol is in the book, but she seems adept at making a decent guess when she doesn't know. And then we introduced the Tobii with a slightly different version of the PODD, and she rocks at that too! It is hard, and complicated, and different, and involved, but she is learning language just like every other kid her age! She could've just said "tired" and I would've known what she was saying, and she knows that, but instead she chose to say a complete sentence...while being tired!  Here is the page she used for her first sentence:

I don't know that I have ever explained much about how she uses this without being able to point to her choices, but I will try a quick and simple explanation:

First I say, "Is it in this column?" And then she indicates yes or no with her head ( she nods down toward her chest for yes and off to the right for no). If she says yes then I go down the column and for each individual symbol I say, "Is it this one?" and she again indicates yes or no. If she says yes then I ask if it was an "oops" in case she made a mistake, and then we just continue on like that throughout the book until her message is complete and she says, "That's all I have to say about that."  It's not simple, or especially quick, but it is effective and we love it. 

I want to share some of the other things Lu has said in the past few weeks:

With the PODD on her Tobii:

"I have a question, tell me yes or no, Lucy, go, appointment, doctor, better?"

"I want, rest."

She wouldn't take a bite of strawberry with dip one day and so I ate it, and then she said, "That's mine, excuse me!"

Lucy had some granulation tissue under her feeding tube that was bleeding, and I was talking to myself about it as I cleaned it one morning and later she said, "bleeding, stomach, appointment, doctor, appointment" I assured her it would be okay and we didn't need an appointment and then the next day there was no more bleeding and I made sure she knew that and then she didn't seem worried about it anymore. 

"I don't like this, think, yucky"

We were at a loud and big family dinner and she said, "hate, chat" and Chad took her in the room for some quite and then she was okay!

"I have a question, why, appointment?" This was before her dentist appointment one morning.

"I want, cuddle, rest."

She was in her stander and we were working on her birthday invitations and she said, "You, I don't want to do it, mean, tired, sick, toe" 

We were doing an egg hunt at the library on Wednesday and she said, "I think it's, bad" and I asked if she wanted to find more eggs and she said no!

With her book:

"Excuse me, I think it's, sad, favorite"

"Hurry up, please"

"Hurry up, feed, pet" she wanted to help feed her fish.

Mom came in with a new perm one day and Lucy couldn't take her eyes off of it and mom asked several times if she thought it was silly. Then Lucy said she wanted to use her book, and she said, "I think it's, not, silly."

"It's, cloudy, I understand, can I play, I'm sorry, what's happening" then she switched to her Tobii and finished with, "you, teacher, Lucy"

So, on top of everything that Rett Syndrome piles on Lucy, all she has to deal with, she still is learning to make herself heard. I'm going to include a picture from last weekend, because really what's a blog post without a picture of Lu, but I wanted to also share a challenge she has been dealing with an extra amount this week. As I have said before, she takes Lexapro to help with her mood because Rett Syndrome creates a chemical imbalance that causes the girls to cry, have anxiety, and sometimes just be very irritable. Her medicine works well, but this week she has been crying a lot and it started on Sunday as we drove to Black Moshannon for a little walk on the one handicap accessible trail they have. We don't know what upset her, if it was the sun flashing through the tree branches or just some anxiety about going somewhere new, but she cried and cried. We eventually got her calmed down and she had a great time, but that is just another example of how Rett Syndrome impedes her life. We just wanted her to have a nice time in the fresh air. So again, in spite of a Rett Syndrome, and all that it does to her, Lu perseveres. Even though I just wrote way too many words, I still don't think I have found the words to express how amazing she is!

Just Do It

Linda Burkhart, the wonderful woman who has trained us to use the PODD, told me a month or so ago about a version of the PODD that Gayle Porter (the creator of PODD) took a year to create for use on a high tech device, such as Lu's Tobii. It has been created in a different software than what I am used to using on the Tobii. The new software is called Grid2 and I am learning what I need to learn to use it. You can download a 60 day trial version of the things you need to see how it works for you. Visit this link: www.sensorysoftware.com     What you will need to download is: a trial version of the Grid 2 software, a trial version of the PODD grid set you want to use, and a trial version of a license to use Mayer Johnson's PCS symbols (having Boardmaker will not help you).  We have been using the trial version for about a month now and it has been amazing! And, the Intermediate Unit has purchased the software for us to use, we are just waiting for it to arrive, so that's an option to keep in mind.  Here is a link to where we purchased the three pieces of software that we needed in a bundle: http://www.zygo-usa.com/usa/index.php?page=shop.browse&category_id=151&option=com_virtuemart&Itemid=11

Just to clarify, when I say, "new version", it is still the PODD! It is just a little bit different, and way more efficient than the homemade version people might be using of the PODD on the Tobii.

And here are some awesome things Lu has said with the Grid 2 version of the PODD on her Tobii:

Let's go, in the car, visit, pappy"

"I don't want to do it, let's do something else"

"I want, our, garden, yummy"

"Lucy, yours, play, music, loud, yours, loud, song". I asked her if she wanted me to play music on my iPad for her and she said yes. I asked her if she wanted to hear our favorite song, which is "I'm Yours" by Jason Mraz and she said yes with a big smile and squeal!

"Have, pain, my, tummy, tired, I don't like it" she said this at supper last night. I think she was just full, but we vented her and she seemed ok, but wow! That was like a sentence! 

I have a confession to make: over the summer, the paper book and I had a falling out. I have finally come to realize it was not the book's fault, or my fault, or Lu's fault. It was just stupid Rett Syndrome's fault, as usual. I have mentioned that Lucy had a summer with a lot of changes. Her tone increased quite a bit, so she has become more stiff. She developed some dystonia in her mouth, and head, and neck which causes her to move and sit differently. She started hyperventilating, and now it has become breath holding. These are all common symptoms of Rett, I realize now. At the time, we were frantic about what was happening to her, and why was it all happening at one time. It was like she was under attack, and I guess really she was. 

So, we didn't have her Tobii yet and all of these changes were making things very difficult for Lu to move her body in the ways she was used to. I am sure she was also confused and terrified, as we were just watching her, I can't imagine what it felt like to be her. So, we still carried the book everywhere, but Lu used it very little. Occasionally she was able to get something out. One time it was that it was too hard, and she wanted to do something else. Quite honestly, I was just so mad and confused, I didn't really promote the book's use like I have always done in the past. I kind of acted like it was a jerk that had betrayed us, when in reality it was of course Rett Syndrome that was the jerk, because it always is.

So, fast forward 6 months or so. We have the Tobii, it's great, but Lu is most definitely not relaying messages with the ease and fluency that she did with her paper book on the homemade PODD that we have on the Tobii. While talking with Linda about the new Grid 2 software, she suggested that I add a button to Lu's Tobii where she can ask to use her book. And low and behold, Lu wants to use her book! She does still love it just like she always has, but now she can choose between the Tobii or her book and she is doing great! 

A second important thing I have discovered is that she and I have both adjusted to what her body does now, and she can do her yes and no head movements just like before...well, it isn't just like before exactly. It takes longer, her yes needs some practice, but she's doing it and I understand now that while it looks difficult for her, as it did back in the summer, it's just how it is now, and she still loves using the book, and she wants to use it, and tells me so often.  I just forgot to "Be Zen".

Here are some awesome things she has said with her book:

 "I think it's, you, fun, not, school"

"I want, want, hug, it's about now"

"Let's go, in the car, you, me, can't, it's about now, I love you." She said this on a snowy day when we had been planning to go to the library, but it was too bad out!

Earlier this week her slp was finishing up their session and Lu said she wanted to use her book, and she told Roxann, "Goodbye" 

The final thing I want to say goes back to the title of this post, "Just Do It". I see people post often about just not knowing what to do with the PODD, it's not working for them, they need to learn it better, etc... My piece of advice on how to be successful with the PODD is to just do it. Anyone who has been trained in it officially has been trained by Linda, and you just need to do what she says. That is why Lucy succeeds, because I went to the training, listened to what she said to do, and we do it. As I have just confessed, we have had bumps and set backs along the way, but nothing and nobody is perfect. When Dr. Sasha said this would work with Lu, I did not doubt her. I personally believe that if Dr. Sasha says something, then it must be true, so I went to the training with that mindset. And then after being trained by Linda and learning about Gayle Porter, I have come to have the same confidence in them: if Linda and Gayle say it, it must be true. 

The PODD is Lucy's language and it must be with her, and available to her at all times, whether it is in the form of the Tobii or the paper book, or both. She NEEDS to know that she can tell me something and that it is important to us to hear her. She NEEDS to know that we believe she has things to say, and that we believe the PODD is the best way for her to say them. If you don't believe that, and maybe some people don't, then it will not work well for you, just like it wasn't working for us when I lost faith in it. But, Lucy has told us such amazing things using the PODD as her language, that I do believe it is best for her. 

It just makes every day so rewarding for all of us when she can talk to us. Yesterday she asked for mustard on her cheese at snack. At supper, I was giving her some tiramisu for dessert, but was not having any myself because I hadn't eaten anything yet, and she said she wanted to use her book, and said, "we have to share", and then "more, please"! What a sweetie and manners too! So, the PODD has changed our lives and continues to do so, because we just do it. We just do what Linda taught us, and it works. And Lucy can tell anyone she wants, anything she wants, anytime she wants.

A mind of her own

This is Lucy's "new" dollie. I rescued her from Goodwill a few weeks ago and cleaned her all up, and even crocheted her up a few new frocks as she was scandalously nude, laying there dejectedly at the Goodwill. When Lu and I play babies, she often says, "brush hair" with her Tobii, but she didn't have a doll whose hair could be brushed very well and I had been looking for one for her. This little lady seems to have had an unfortunate experience with a "hairdresser" and has had a bit of a haircut, but it is easy for Lu to brush, and fortunately, always seems to need it. My favorite part about this new dollie, however, is her name. I, uncharacteristically, named her Babette without consulting Lucy at all. After Lu had Babette for about a week, I asked her if she liked her dollie's name to be Babette, and she said, "No". I said, mostly to myself, "How can we figure out how Lu can tell me what she wants this baby's name to be?" And then Lucy navigated to the first page of her PODD on her Tobii and said, "My name is Lucy" and then I said, "Do you want your baby's name to be Lucy too?" And she navigated to the yes/no page and said, "Yes!" So Babette became Baby Lucy. 

Both of those pictures above were done on Lu's Tobii, using her eyes! On the page I have made for her circle time at school there is a button that says, "Illustrator" because when they read books the teacher always asks questions about the parts of the book, including what is on the title page. Well, one day at lunch Lu went to this page and said "Illustrator" several times.  I asked her if she wanted to be an illustrator and she went to the first page of her PODD and said, "Me". Then a few minutes later she went back to illustrator again and said it a few more times and when I asked again if she wanted to be an illustrator she said, "I do"!!! It was so awesome. 

So, I went on a mission to figure out how Lu could do a little drawing on her Tobii. With the help of the Tobii rep for our area, Mary, that helped us get the Tobii in the first place, I figured out how to set up the Tobii so Lu can control the mouse. Then she sent me two programs through Dropbox and told me about a few websites. The first picture is from www.jacksonpollock.org. It is really easy; Lu just uses her eyes to make the lines, and then to change the color you just left click the mouse and a new random color is generated, which is fun because then Lu gets to see all different colors and shades with little effort.  Sometimes she can figure out how to change the color by herself with her eyes, but I don't know how she does it! And the second picture is a program Mary shared with me that has limited colors, but they are fun and easy and it can play music while she draws too.  I added a way for Lu to tell me when she wants to paint and which program she wants to use. It's all a great way for her to be learning how to control the mouse with her eyes so that she will continue to improve.  There are actual adult artists that use the Tobii to create very elaborate artwork, so there is no reason Lu couldn't do the same, and I told her so. 

We talk about what jobs she could or could probably not have when she is grown up, when they come up in conversation. Another occupation we have talked about is being an engineer because Lu seems to be fascinated with bridges. She often goes to a page in her PODD with the word/picture of a bridge and she will activate it over and over again. I asked her if she wanted to read some books about bridges  and she said "yes", and we did and she loved them! I told her that she could use a Tobii and her eyes to design bridges someday. I said she wouldn't be able to actually "build" the bridges herself, or be a bridge painter, but she could definitely design them and then other people could build them. 

I cannot, and will probably never be able to say enough about how essential I believe the Tobii is to improving Lu's quality of life. Sometimes a day goes by where she doesn't say much, and then she tells me that she wants to be an illustrator and that she wants her baby doll to be named after her! I wish every person with complex communication needs who cannot speak or use their hands was just automatically given a Tobii. And I know there are many other visual communication languages like the PODD, but it's the one we know and it's the one that first opened Lu's door to communicating with us, so I have a bit of a soft spot for it. 

I guess in the face of Lu's upcoming procedures, maybe it is important for me to try and just remember how the feeding tube will also greatly improve her quality of life. Who knows what we will do in a day when we don't have to spend it in frustration and tedium trying to get nutrients into her. I'll tell you what we will do, all kinds of super fun stuff! It's funny the stigmas that do and do not pertain to different things, ie: people shy away from medication for mental conditions such as anxiety and depression, but will unhesitatingly take a pill for their heart, thyroid, headache, etc. Lu's Tobii is much more of an obvious and cumbersome piece of equipment that we lug EVERYWHERE with us, than her tiny little tube will be hidden under her shirt, but the look of devastation on peoples faces when they hear she needs one is so obvious, in comparison to the look of interest and enthusiasm for the acquisition of her Tobii. I get it though. However, I look forward to seeing her gain weight back, get some color back, and not need as many little rests throughout the days, as much as I looked forward to communicating with her.  She is pale, and tiny, and takes several little naps a day. She caught a stomach bug on the last day of school before Christmas break and then shared it with me. That is the fifth time she has been sick since the beginning of the school year!  I am looking forward to being able to fill up her belly so we can go somewhere and do something fun, without worrying about how and where she will be able to get a snack in a little bit. Here is one of my all time favorite quotes:

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end.  Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next." 

 -Gilda Radner

I will have plenty of time to share how the procedures have gone, I am sure, while Lu recovers.  hope everyone has a happy holiday of their choosing! 

The Essence of Human Life

This is a reading list Lu made up using her Tobii the other day. I have been working at making pages on the Tobii of the covers of all of the books she owns (which is many) so she could choose what she wants me to read. We then read the paper version of the books because they are not in her Tobii (yet!). I have dreamed of this being a possibility for all of her life. Right now I have 7 pages of books with 20 books on each page and I asked Lu to go through and choose two from each page that she wants to read at some point. These were her choices. She almost always chooses the Avengers, and the C Book, and How The Grinch Stole Christmas. I never knew those were some of her favorite books, but I was always just dying to know! 

"It is the position of the American Speech-Language-Hearing Association (ASHA) that 'communication is the essence of human life and that all people have the right to communicate to the fullest extent possible. No individuals should be denied this right, irrespective of the type and/or severity of communication, linguistic, social, cognitive, motor, sensory, perceptual, and/or other disability(ies) they may present.' "

Linda Burkhart used the above quote at the end of the PODD training we went to last December. It has stayed in my brain ever since, but most especially the little part that says, "Communication is the essence of human life." I even used the quote in one of the appeal letters I sent to the insurance company as I pleaded for them to approve the Tobii. When we learned the PODD a year ago, that was the beginning of our glimpse into what Lu was thinking and feeling. When we got the Tobii a few months ago, it made me realize that with the ability to relay her thoughts so quickly and efficiently, people will see her as a real person. Because, being able to communicate truly is the essence of human life.  I believe it is a sad, but true fact that without the ability to communicate, people are seen as "less than", even if they have all kinds of thoughts and feelings swirling around inside of them. 

 Around the same time that we got the Tobii, maybe even a little bit before, I looked at Lucy one day and had a startling, but exciting realization. I looked at her and thought, "How could someone not fall in love with her some day? Why couldn't she get married and have a life with someone?" Then I read a little about Stephen Hawking as a comparison for how I think that could be a possibility... When he married his first wife, the ALS was just beginning to be an issue for him. He had recently received the diagnosis and she still married him. She took care of him a lot throughout their marriage, but they also always had nurses, and assistants that did a lot of the physical caring for him. It was just their way of life to have extra people with them to tend to Stephen's needs. Him and his first wife eventually divorced after many years together and after having three children. He remarried one of his nurses. He remarried even though at this point ALS had completely taken over his body and had done so years ago. BUT, just like Lu, his mind remains in tact. A woman fell in love with HIM and married him, in spite of the fact that he has no control over his body, in spite of the fact that he communicates using a speech generating device, and in spite of the fact that all of his very serious medical conditions require round the clock care by her and others.  I think Lu is so incredibly awesome and amazing that I believe she too will meet someone someday who also will be able to look past Rett Syndrome and fall in love with HER. 

While out to eat at Red Lobster on Saturday night with Chad's dad and stepmom, Lucy kept saying, "panties" with her Tobii. It was funny, but it also gave us the opportunity to talk about when and where it is and is not ok to talk about bathroom things. That's what you do with children; you teach them manners and about topics that are better left for discussion at home, in private. And now Chad and I get to do that too.  I wish every person on earth that cannot speak on their own was just automatically given a Tobii. There are many families of girls with Rett Syndrome that have no communication system for their daughters, let alone a Tobii or some other kind of speech generating device.  While I am so grateful that Lu is able to have her Tobii, it also breaks my heart that there are so many people that do not have one and have not been given the opportunity to communicate. 

This morning Lu and I talked a little bit about what she might be when she grows up...because she will be SOMETHING! With or without a cure, she will do something wonderful, and maybe be someone's wonderful wife. And contribute to society just like others do. I just know it.

"Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity."

-Stephen Hawking

"All my adult life people have been helping me."

-Stephen Hawking

"Among physicists, I'm respected I hope."

-Stephen Hawking

This kid's face

Look at this kid's face:

That giant smile is because of her Tobii. Here is the page I made for her that caused the smile:

Those are the movies we have that she can choose from and she chose to watch Despicable Me and was so happy. What a little thing, but sooooo huge. Choosing what movie Lu  would like to watch may not "technically" fall under the "medical necessity" umbrella, but I think it should in regard to how it makes her feel mentally and emotionally to make choices so easily and readily.  I made a page also with all of Lucy's classmates at preschool and she can look at the page and say hi to them. Also, that is a tiny thing that is actually huge for her. I've put some books on her Tobii too. Some I found that were already made for eye gaze, two so far I have made myself. Lu can now look at some books and turn the pages again...with her eyes! It has been almost a year since her hands quit being able to turn the pages of books, which used to be one of her favorite things to do. 

Luckily our primary insurance company covered all that needed to be covered in regard to the Tobii. The secondary insurance, Gateway Health, again denied it as not being medically necessary. Fortunately we don't need anything from them, but it is just sickening to me that they could say it is not medically necessary for a person to be able to independently communicate their wants and needs. Again I say, look at that kid's face! She is often smiling, but that smile is because she was able to tell me something; quickly, easily, and accurately. The Tobii is expensive, that's why it took so stinking long to get it here, but I know that Chad and I would pay any amount for the rest of our lives if we had to, to keep that smile on her face and to keep hearing what she has to say. 

"What are you going to tell me?"

So, the battle continues with the secondary insurance, Gateway Health, but we finally have decided to by pass them and have the Tobii ordered and billed only through our primary insurance, BCBS. I was not aware that all along Blue Cross had approved the device 100%! However, even though they say they approve it, this is not a guarantee that they will pay. In reality, they usually do what they say and pay, but they have to state that its not a guarantee. So, we were given the option to bypass Gateway since they are being so difficult and we then agreed to pay any difference if for some reason the primary doesn't cover it all. But, Gateway is still deciding on my second-level appeal, so if they decide to not be so evil and they finally approve it, then they will pick up the difference, again, if there even is any!

I think if we had known this was an option I would've done it a long time ago, but maybe they wait until insurance is being real stinkers to take this route. Either way, Lucy's very own Tobii was ordered on Monday morning! It will be here in 2-3 weeks! The reaction I had surprised me. I got so excited and so emotional that I was just crying and laughing. I was showing Lucy pictures of it online and reminding her of what it did (since it was so long ago that we had the loaner) and she just started laughing and smiling and getting excited. As I cried, I asked her, "What are you going to tell me?" And she went wild with laughter. So, I tried to capture her excitement on video and succeeded! Here it is:

The right to speak

We were denied for the Tobii when we submitted our first request back in January. We then spent several months doing a Tobii trial, and also trialling a Dynavox Eye Max which is a similar machine, but inferior. In the denial letter it stated that there was not sufficient evidence that Lu could use such a sophisticated device. We recently submitted an addendum to our original request that included a detailed assessment showing Lucy's ability to use the Tobii which was done by Dr. Sasha's speech therapist. In addition to that, our speech therapist included a detailed report on how well Lucy used the Tobii in the three weeks that we borrowed one. That is all in addition to the first report by Danielle and another report by Dr. Sasha's first speech therapist also stating Lucy's ability to use the machine. 

But, on Tuesday I was told by the Tobii funding lady who has been helping us, that Gateway, Lucy's medical assistance insurance, was going to deny it again.  Gateway told the Tobii lady that they had called Dr. Sasha's office and said they needed to speak to her by 4:00pm on Tuesday to do a "peer review" and if they didn't talk to her they were planning on denying it.  Dr. Sasha did not get any such message and knew nothing about it. She said that sometimes insurances will do that to get out of paying for things. She is seeing what she can do about it today. She has already told us that she will call as high up as she needs to and explain why it is so important that Lucy be able to tell us things immediately and independently. 

But why on earth should she have to! It is not rocket science why it might be important for a person to be able to independently communicate their needs. Does every person not have the right to "speak"?Yes, Lucy does a bang-up job communicating with her PODD, but that requires a partner to be sitting right there in front of her turning the pages and interpreting her signals. With the Tobii, Lu simply looks at it and finds what she wants to say. Not only that, but her PODD can be put into the Tobii, so she can continue with the language she is familiar with. We have shown that she can use it 10 ways to Tuesday, and they still want to deny her. 

It literally makes me sick that some stranger somewhere is just sitting around in their office deciding that Lucy is not worthy of the right to speak. Like, not everyone has the right I guess. I find that decision to be so incredibly offensive I am just about beside myself. I have woken up the past two mornings tense and anxious just wanting to know something. On top of that, Lu hasn't had a BM since Monday morning for no evident reason other than Rett Syndrome literally hates her guts this week. I have not given her too much cheese, I have given her all of her poop medicine, plus green smoothies full of spinach all week, and a prune and apple smoothie this morning and she still hasn't gone. 

Dear Medical Director of Gateway Health Plan,

My daughter can't use her hands, walk, or even take a poop sometimes, ON TOP OF NOT BEING ABLE TO TALK!!!!!!! Could she just have a freaking Tobii eye gaze machine? Could one thing in her life just be simple for her? Could it? 

Sincerely,

Her loving mother

Here is a link to see what all of the fuss is about and a picture of the coveted machine:

http://www.tobii.com/en/assistive-technology/north-america/products/hardware/tobii-i-series/

Dollies and Tigers

I still feel sad pretty often, I probably always will. I feel tired of talking about it though. Yesterday our sweet little patooty turned three and I feel like we are on the verge of a new chapter in our lives. Lu will start preschool, we will have less therapy at home, and it's spring! We have a beautiful new house with lots of room and special planning for Lu's needs. Lu is rocking her PODD book and will hopefully have her own Tobii in the not so distant future. Things are going well.

The International Rett Syndrome Foundation has a family support program made up of volunteers in each state that reach out to newly diagnosed families to offer support, information, and just a listening ear. It is called the Regional Representative program and a few weeks ago I became the central Pennsylvania regional representative. The rep that helped us through in the beginning, also named Julie, was and is so amazing, and I told her last year that I thought I too would like to be a rep, but I wasn't ready then. A year has passed and I feel like we have gained a significant amount of knowledge and confidence in that time, and I want to be able to do for others what Julie did for us. I want to help educate families in the correct information about Rett Syndrome and reassure any families that may have received outdated and incorrect information from their doctor.  And i want to help families that just might feel so overwhelmed, and unsure, and devastated to know that while its not going to be easy, it's going to be better than they might think and it CAN be more amazing than they could ever imagine.

Over this past year I have often thought about the two reactions families could have when given the news that we were given last year: 1.) Denial, rage, defeat. 2.) Rage, acquire knowledge, accept it as best you can, kick Rett Syndrome's ass daily...we chose route two. I want desperately to help as many other families as possible be able to also choose option 2. Not only because it will just make their lives easier and more pleasant, but it is what their daughters deserve! 

So, I have decided to change my direction slightly for this blog and begin to focus a little more on what we do each day to help Lu succeed. I know I do talk about some things, but there is so much more that we do all the time, and new things daily, that I want to share how great each girl's quality of life can be with other parents and our family and friends. Giving Lucy and her Rett sisters the life they deserve is all about adapting, thinking outside of the box and trying to not long for the inside of the box because it is simply not part of your lives anymore. It is all about a "can-do attitude"! I know that sounds corny, but it really is. However, it is also a difficult balancing act to also remain realistic (not pessimistic). Every day I say, "Lucy can do it!", but there really are things that she just can't do. Families have to learn what just isn't going to happen and what can happen with some creativity!

Yesterday Lu said with her PODD, "I want to, play, dolls, go to bed, sleep, wake up. I like this, fun, lucky." And so then when we were playing dolls she said, "More." with her PODD. And she also said, yesterday, "Let's go, library." So I used her PODD to ask her what kinds of books she wanted to get at the library. I asked her if she wanted a book about a particular animal and she said yes and then found "tiger" and said yes to that which was funny because I didn't know she likes tigers! It was totally awesome! I get excited to imagine when she's older and she can tell me what she wants to learn about (even more so than she does now!) and how she wants to learn it, and more of what she thinks and feels and likes, and I just feel so proud of her for how determined and positive she is. Here's a picture of Lu with her dollies after we wrapped them up and put them to bed, and also a picture of her "shopping list" for our library trip tomorrow!

"I have an idea..."

On Sunday night during supper, Lu said with her PODD, "I have an idea, I, help, more, eat". I asked her if she wanted to help feed herself more and she nodded, "yes"! In the past Lucy has been able to finger feed herself and could get a loaded fork to her mouth with some assistance, but as time went on she was having less and less success. If she managed to pick up a piece of food, and this she could only really do with her left hand, the hand would most of the time flick the food away before she got it to her mouth. We tried using the same cuff that we use to color with to hold a spoon and she didn't like it at the time, so I have just been feeding her myself for quite some time now.

I'm sure I have mentioned that girls with Rett often have a great deal of difficulty gaining weight and maintaining proper nutrition and hydration. Weighing in at nearly 35 lbs and being 38" tall, this is not currently a worry we have for Lu, but I am passionately determined to keep it that way! So getting food in her is my main priority when it comes to mealtime and keeping her healthy and strong. But...her quality of life, the combination of every aspect of her care and needs, is the very tippy-top priority. Besides keeping Lucy physically healthy, I am always thinking too about her mental health. How does she feel about her life? Is she frustrated sometimes? Does it embarrass her to drink out of a bottle...does she wish she could feed herself? Chad and I thanked her for telling us that she does in fact want to help feed herself and she smiled.

I am always so torn between letting Lu struggle with something or swooping in to help her. On the one hand, she has to struggle with everything she does so some things I think she can be helped with. However, at the same time, struggling a little is how she will learn things and be proud of herself. I don't always swoop in; I restrain myself, but I'm sure I do more than I should at times. She is just so amazingly brave and motivated, and strong, and patient. Even when she is struggling with something, she rarely gets overly frustrated about it which I am always so grateful for. With Rett Syndrome it's just always so hard to decide if a task is something she physically can't do right now, or if its something that she could do if she worked and worked and worked at it. When we were working on feeding before she had little interest in it and barely got anything to her mouth, so we worked on other things.

But now, at her request, Lu has eaten half a can of chicken noodle soup, a packet of oatmeal, and two sandwiches with much less help from me! She is very cooperative with the universal cuff now also. I just support her elbow and lightly hold her wrist to help her keep it steady as SHE brings it to her mouth. She has also been doing better at picking up pieces of sandwich and getting them to her mouth too and she just beams with pride as she is doing these things! I have apologized many times to Lucy for not asking if she wanted to help feed herself. I'm so glad she can tell me things!

PODD book extras

For any other Rett parents who might read my blog and also use the PODD, I wanted to share a few little extra things I have done to make the everyday carrying-around of the book more convenient. First, I kept forgetting the yes and no buttons downstairs when I went upstairs so I made a little pouch (out of one of Lucy's old shirts) and I have tied it to the long piece of PVC so her buttons are always with the book and I don't have to remember them or use up another hand to carry them, and since I only have two hands, this has proven to be very helpful!

After trying out several scarves, all of which kept getting torn by sliding through the PVC, I remembered a messenger bag I had that I never use and so I took the strap off of that and used a shoelace to attach it to the book. I threaded the shoelace through the PVC and then looped it and tied it to the metal part of the long strap. This made a much more durable, and adjustable strap and I love it!

Just to pretty it up a bit, we also covered the PVC with colorful duct tape, since it is water-repellant it should be ok. I think that one of the most important things about carrying the book is finding what works best for you, and none of the things I have done might work for anyone else, but I think to ensure our willingness to always be carrying it, it is important to feel comfortable in it. Chad is also working on a picture for the back cover of the binder. I found with that particular binder, stickers WOULD NOT stick to it and so I glued them on, and they still have mostly fallen off at this point. I also want it to be pretty for Lu to look at and so she feels proud of it, since it is her book, and her voice.

Those couple things have been so helpful to us, and I just wanted to share in case they might be helpful to anyone else!

Too amazing for a title.

Yesterday, with her PODD book Lucy said:

"Mine"

Yesterday we went to Kindermusik and out to lunch with my friend Missie and her daughter, Celie, who is a few months younger than Lu. While the girls were waiting for their food I was giving Lu blueberries and crackers and was sharing them with Celie. As toddlers are inclined to do, Celie was very "enthusiastically" demanding more and more blueberries and crackers. Lucy made a little face and I asked her if she had something to say and she said yes, and then using her book said, "Mine!" My heart nearly burst right out if my chest!

It is ironic, the feeling of pride I felt about Lucy making essentially a "greedy" comment about her snacks! Parents are supposed to teach kids to share and be fair, and after my initial elation passed I did tell her that I know they are hers, but it is nice to share with our friends. However, "typical" toddlers say, "MINE!" It's what they do, and it's what Lucy did too, just like every other toddler! I don't even know how to express how happy it makes me that Lucy was able to say and do something just like her peers do, even if it was one of the less desirable attributes of young children.

Lucy has literally not reached a gross motor milestone since she learned to stay in sitting on her own, when she was about 7 months old. If she is lying down, she can't sit up on her own. All of her liquids come to her in a bottle that I give her sitting on the couch, she cannot dress herself, or feed herself, or walk, or play with most of her toys in the typical way. She can't hold a crayon or a paintbrush. But she can say "Mine!" She can say anything she wants to, whenever she wants to, and to whoever she wants to!

Her continuing progress and success with the PODD book makes all of those other things a little less rotten. I feel less sad. I realized that sitting on the couch last night. When the day is done and we are just sitting quiet and still on the couch, I am always aware of a lingering sadness and anxiety about what the future holds for Lucy. Last night, I felt it significantly less...all from that one little word: MINE.

The World According to Lucy...

I have been meaning to sit down and write this post for some days now, but with the new puppy and just STUFF in general I am just now having time (and I only have 10 minutes until Mom brings Lucy home!)

On New Years Eve Lu said she had to go to the bathroom, and she did! I already posted about that, and then the last post was about Lucy's thoughts on the puppy, but in between there and since talking about the puppy, she has said all kinds of things! It is amazing and she is amazing and the PODD books are amazing! I'd like to just list some of my favorite things she has said. I keep a little log of what she says each day and the context in which she says it, but I don't have time to mention all of that right now! I'll do my top 10 favorite things Lucy has said, I can't even believe I can say that, it's just too awesome!

1. In reference to Roberta, the OT saying she liked Lucy's jammies, Lucy said, after laughing
A LOT, "I like this, lucky, nightwear." That was the first longer thing she said. The way the book is set up, things she says starts with "I like this" or "I don't like this" or "something's wrong" and so on.

2. "I have to go to the bathroom" but when I took her up to the potty she didn't go and I was talking to her about how it is best to try to only say she has to go if she really does, but it's okay if she thought she had to go. When we came back downstairs she said, "please, I need to go to the bathroom" and I reminded her we had just been on the potty and she said, "just kidding mom" My mom pointed out that was the first time she has really said "Mom"!!!!!

3. "I like this, funny, cool, me, good, good job."

4. "I don't like this, makes me mad." She said this when I was being insistent about her drinking water at supper.

5. After Lucy choked a little on some cereal at breakfast she was crying and fussing and she said, "Something's wrong, sad/upset, want someone, mom" (that was maybe my favorite so far!)

6. "Done/finished" she tells me this at meals sometimes!

7. One of her favorite things to say that she says pretty often is "I like this, lucky, cool." My mom reads her the Dr. Seuss book, "Did I Ever tell you how Lucky You Are" and we think that is why she says lucky all the time!

8. When I told Lu we were going to get the puppy and she was going to stay with Grammy and Pappy she said "Let's go, in the car"

9. One night in a sort of round about way she said her t-shirt was too tight, but then I figured out she meant possibly her bib.

10. Today, after she didn't pee on the potty, but then peed on her changing pad, she said "I like this, cool, cute, mom"!!!!

Ok I have more than 10!

11. While sitting in a new special chair we are trying out she said, "Something's wrong, cold." So I gave her a blanket!

12. Yesterday I told her with her book that we were going to the library and the grocery store and she said, "I don't want to do it" and then I thanked her for telling me, but told her that sometimes we all have to do things that we don't want to do and she had to come with me.

Lucy is getting better and better with using her head for yes and no and even does it sometimes without the buttons that we use to say yes and no for her. A question that comes up often by others is "How does she even know what that picture means?" We'll, of course she doesn't know all of the pictures, but the program is set up in a way that helps her to learn. What's even more important is that we believe she knows things and that she is capable of learning them. That's why she is doing so well, because we believe in her.

"I need to go to the bathroom"

Lucy is now 31 months old. Today, using her new PODD book she told us, "I need to go to the bathroom" and then I took her upstairs to the potty and she did indeed need to take a big poopy! Lucy has "told" us things by making choices and by using her yes and no buttons and head movements, but today, at 31 months old, she made a statement! It was amazing!

It has been less than a month since we went to the PODD training and it took nearly two weeks just to get the book put together, so I have only been modeling the book for about two weeks now. Within just a couple of days of the me starting the modeling, Lucy was watching nearly everything I "said" to her and she was mesmerized. The whole process of how to use the book as a visual language is a long explanation, but you can get the gist by knowing that when I point to a picture I say what it is and that is how she learns what they are and where they are. Since Lucy isn't able to use her hands reliably to point to the pictures on her own, we use a scanning process and her head movements for yes and no for her to choose what she wants to tell us.

Now, in the past two weeks, even though Lu has been very engaged and interested in what I was telling her, any time I have asked her if she had something to say, she always said no (for "no" she turns her head to the left). Today we were having speech and Danielle gave her three choices of activities and the fourth choice of "something else" and she said yes (for "yes" she tilts her head down or forward) for Mr. Potato Head, but then she kept saying no for everything she was given as a choice to put on him. After several series of choices and all she had chosen was a nose, I suggested that maybe she had made a mistake and didn't mean to choose Mr. Potato Head. She looked toward her book and reached for it and said yes when we asked her if she had something to say! She scanned first to "uh oh" since she had made a mistake when she chose Mr. Potato Head. Then she went to "Turn the Page" and on the next page she said no to "please", "thank you" and then said "yes" to "I need to go to the bathroom".

I just realized how totally awesome it is that I have had to use so many quotation marks during this post to emphasize things Lu has said! I have friends with children who can speak and still won't tell anyone when they need to go potty! I don't think I can even use words to explain how I feel about Lucy being able to tell us things. In February it will be one year since we got the diagnosis of Rett Syndrome. Less than a year ago a stupid doctor told us, in not so many words, that Lucy's life was going to be basically worthless. Ummm, I'm going to have to say "Errrr WRONG!" Kiss our ass Dr. Coffman and kiss our ass Rett Syndrome! Lucy had to use the bathroom today and went right ahead and told us about it! That's my big girl!