Monday, December 31, 2012

"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!

Monday, December 24, 2012

Not a big fan

I've never been a big fan of Christmas. Even as a kid, after I realized there was no Santa of course, I tended to feel so guilty that Mom and Dad bought me so many presents because we just didn't have much money. I always thought, "I haven't done anything to get so much stuff!" Of course I was still a kid though too, so it was a mixture of guilt and excitement.

As the years passed I let my hatred of Christmas grow to whatever proportions it wanted to, but I still dutifully participated. Then one year I decided to try and make a change and make as much of the presents homemade as I could. That has helped since the year I started that, and I have become progressively less grinchey. I have less time now, so less it homemade, but I still try my best. And then of course Lu came along and I try to get more into the spirit for her sake. So, we decorated the tree, made stuff, bought presents, and helped her get excited. She found the "hidden" pickle ornament on the tree this morning and got a special "Pickle Present", which is a little tradition introduced to me by my good friend Shelly. Lu has found the pickle every year since she was born! Chad and I also decided long ago to not do the whole "Santa" thing, so Lu knows that it is just a story and still enjoys the shows and Christmas books and whatnot.

Anyway, large gatherings are really not Chad and I's favorite things to begin with and I feel nervous about today because as can be seen by the picture below, we are seeing EVERYBODY today, well mostly, and those are just the pictures that I have made, there are still more people that I don't have pictures of that we will see. And now we have a "weird" bottle that Lu uses, a big book for communicating, and all of the other things that are different about her and us, and I get nervous about all of the questions. Like I said after Thanksgiving, they are well-meaning questions, and from our family that loves us and just wants to understand all of the things about Lu, but I just know I have a day of explanations ahead of me, and I just kind of wish we could spend the day doing Christmas stuff and ignore all of that. Not to sound like Lucy and Rett Syndrome are the focus of the day by any means, that's not at all what I'm saying, but just inquiries come up in conversation, sometimes maybe just because people don't know what to say. It's just how it is I guess though. People love her and want to know how she is doing and as her parents we have to tell them. I guess I just wish I had a day off every once in awhile from talking about Rett Syndrome, but we don't and we won't, and its not okay, but it just is what it is.

So anyway, Happy Holidays.

Friday, December 21, 2012

One last hoagie

Last night Chad and I were debating what the date was and then realized that today was when the world was supposedly going to end. In my infinite lameness (and hoggish-ness) the first thing I thought in my head was, "Man, I wish I could have just one more Subway sandwich!" I told Chad what I had thought, he confirmed I am lame, we laughed, and then quit talking about the end of the world. A few minutes later though, I realized that even though wanting one more hoagie is by far the least climactic ending wish I could have, at least my first thoughts were not things like "I wish I had been a better mother, wife, daughter, friend, etc." I did not instantly think regretfully about things I wish I had done, or had, or seen.

To me, my first thought about wishing for one more hoagie, while trivial, and mundane, means that I do not have any serious regrets, or guilt about how I have lived my life so far. I give everything I have to being a good mother to Lu and wife to Chad. I love and care for my parents, and grandparents and family and try to help them out and be with them as much as I can. I have probably been falling behind in the "being a great friend" department, but life is busy when Lucy has 8 therapy sessions a week, when we are trying to build a more accessible home, when I still have all of the regular household duties to tend to, and when I want to spend any spare second doing more and more to help Lu's progress. But I have great friends and they understand and love me even when I am neglectful.

So, even though I have never had "perfect behavior" in any of the above-mentioned roles, I am happy with how things have gone in life. I am so grateful to have Chad as my husband, he truly is, to use a cliche, "my rock", and I am his. We are so overwhelmingly grateful together to have such a beautiful and amazing daughter. (Geez, I didn't mean to get gushy!) Life is good. Maybe people who complain about their lives feel it isn't good if it isn't perfect, but I seldom strive for perfection. It's not realistic to do so and if that is your goal, you will likely be constantly disappointed.

I'm glad that it is almost 1:00pm and the world hasn't ended...I was pretty certain it wouldn't. I was just going to say that maybe one regret I might have is how much I love food and how much I eat, but then I thought of that hoagie again and I don't feel bad about that either. Have a nice time continuing to be alive!

Thursday, December 20, 2012

Miss Rumphius

The other day Lu and I read a new book that we have checked out of the library called Miss Rumphius. Miss Rumphius was raised by her grandpa and she told him one day that she was going to travel all over the world and see far off places, but then someday she would come back home and live by the sea. He said that was good, but she had to promise to do one more thing, and he said she had to promise to make the world more beautiful. She agreed and when she grew up she did the first two things and when she was back home living she noticed that seeds from the lupines she had planted had blown to a field nearby and grown there also. This gave her the idea to carry pocketfuls of lupine seeds wherever she went and she spread them everywhere, so she made the world more beautiful by planting lupines everywhere.

It was a cute story and at the end I looked at Lu and said, "Do you know how I made the world more beautiful? By making you." And she turned her head real quick and smiled right at me. It was so sweet and so purposeful I think. She is the light of my life.

Tuesday, December 11, 2012

Breakfast Time!

In the past month or two Lu has started scooting out to the kitchen when she knows it is getting to be time to eat! We got a cute little owl bell that we ring too and say, "Come on out! Time to eat!" And then we say whatever meal it is time for and she scoots herself on out! It is so is she awesome!

Sunday, December 9, 2012

The Phases

In the past year or so, Lucy has gone through phases that have worried me, stressed me out, and basically just got me all in a twist. As soon as something new has started I instantly think, "Oh, so she does this now, ok." And then I would assume they were things that would be forever.

There was a period of time where Lucy was chewing a lot on her hair and inevitably eating some of it. I learned the word bezoar while researching hair eating online, which basically means hair ball, and freaked out a little bit about it... but then she stopped.

For awhile she was chewing pretty avidly on her arm. I got her a bracelet call Oh Plah, which is wide and thick and for teething so she could chew on that instead of her arm...and then she eventually stopped.

Before we went on vacation this year, Lucy had been having quite a bit of trouble with eating, like she just seemed to not remember what to do some of the time. So, she wasn't eating or drinking much and I was totally freaking out that time. Many girls with Rett have trouble eating and drinking which causes them to not be able to gain weight, and this is one of my biggest fears for Lu. (Unfortunately I believe the fear manifests itself from our completely failed and horrendous attempt at nursing where I felt like Lucy might waste away because we weren't making it work, but that's neither here nor there.) We went on vacation, and she started eating and drinking ravenously again.

In October Lucy started grinding her teeth and she was really going to town with it. But, guess what...she quit.

A few months ago she started clicking her tongue and almost making kissy noises again, which were things that she used to do before her regression...but then she stopped again.

Sometimes Lucy drools a TON! Sometimes she can't sit still enough to eat and I have to hold her tight to feed her. Sometimes she blows raspberries constantly while eating. Sometimes she bites herself and us. Sometimes she really can laugh A LOT! Sometimes she is able to give kisses and hugs.

All of the things I have mentioned above come and go. The good and the bad. Lucy recently started chewing on and constantly mouthing the knuckles of her left hand. That's what one picture below is of. Another picture is of how I bandaged it up after smearing some salve on it so at least the skin can heal a little while she sleeps. I finally realized the other day, as I was agonizing over her raw knuckles, that she will probably quit doing this at some point too! She will probably start again too at some point, but I finally understand that some of the things that come with the Rett Syndrome, so far are not "forever" type things. The things like I have mentioned I mean of course; she has plenty of forever things that go along with the condition, but the things that pop up out of nowhere and get me all worked up, have a way of disappearing after awhile too.

She'll probably gnaw on her arm again at some point in her life, or eat her hair, or get raw hands, but I suppose the secret is just to care for it as best as I can while it is happening and not worry as much about whether or not it is going to be something she does FOREVER. I very often remind myself of how lucky we are that she has not yet had any seizures and she can eat on her own, as those are two major concerns with many of the girls.

So anyway, I just wanted to share my epiphany and my joy in feeling a little calmer.

PS. The third picture is just of how cute Lu is after her bath at night!

Tuesday, December 4, 2012

I have something to say!

We finished the PODD training today and the final thing that Linda Burkhart, the trainer, said was:

"Now go home and talk to your daughters."

Even as I write that I am tearing up again, as I did when she said it. Toward the end of the training I was having a hard time keeping it together, probably brought on by the drain of sitting for two days in a row in a training, being away from Lu, and just being away from home in general, but also because this is no small task we are about to take on and it is not a matter of little importance. It is HUGE! A quote that Linda used toward the end was:

"Communication is the essence of being human."

Yeah it is. And right now Lu has her own ways of being able to communicate some things to us, but as she learns to use this program and begins to understand that this book is her voice, she will blow our minds with the things that she will be able to tell us.

As we sat in the training I did my best to latch on as hard as I could to the main concepts behind the system so I can always bring everything back to those ideas. The very most important thing that we and everyone in Lucy's life will have to always, always keep in mind is what I just said above: THIS IS HER VOICE! She currently uses her voice to vocalize and laugh and do all kinds of things, but by saying "voice" we mean it is her way to communicate and this book needs to be with her always. It is not work, we won't take it out, practice with it, and then put it away; it will need to always be present, or it won't work. And it is not a small book, nor is it inconspicuous, stylish, or convenient. But I said to Danielle and Chad that we need to think like this and so does everyone else: we would not duct tape a child's mouth shut for parts of a day because it is easier for them to not talk at those times and not having her book available to her is essentially doing just that.

Linda Burkhart, was trained by the woman who created PODD, Gayle Porter, from Australia. Gayle said that her best advice to us as we begin the process of learning to be fluent in the system so that we can model it and teach it to our children is to
"Be Zen." Easier said than done for myself because I do not tend to be zen when it comes to something of great importance to Lucy's well-being. I tend to be anal, worried, tense, and vigilant. Why she says that though is because it is not something that is going to be taught overnight. It will be a process and Lucy will not just pick this book up once I have it made and tell me things...we have to be patient, relaxed, and not pressure her.

Another key thing I need to keep in mind to help me stay focused as we learn is that the PODD is a "visual language". It is just like learning sign language, or a second language, or even like children learning a first language. It is not just a picture book. It is a whole mind shift, it is not very widely known in the United States either. Linda is the only trainer right now that is certified to do trainings in the U.S. So, when people see me lugging this book around with us everywhere we go, they will not know what it is or why we are doing it, which is a little intimidating to me. But below is a picture of some new bracelets Chad, Lu, and I will wear when we start using the book. We will model for Lucy how to lift up her arm with her bracelet on to let us know that she has something to say. Let me repeat let us know that she has something to say!

Saturday, December 1, 2012

Far and Away

Today Chad, Danielle, and I left for Yonkers to attend a training for Lu. For anyone that doesn't know, Danielle is Lucy's speech therapist, and also my cousin. She has been working with Lucy since shortly after she turned one. The training we are here for is to teach us to use a communication program called PODD (Pragmatic Organized Dynamic Display). It is a "low-tech" system using eye-gaze to tell us what she is thinking, feeling, wants to do...all kinds of things. I don't even know all of the things that she will be able to tell us, but luckily we have been working for several months on teaching her to use her eyes to tell us yes and no. I think I have mentioned this before, but she can look at us if she wants to answer yes and will look away for no, and she keeps getting better and better at it.

So, Dr. Sasha has invited her patients' families to this training FOR FREE! It costs $10,000 to have the trainer, Linda Burkhart, come for two days and luckily Dr. Sasha was able to get a grant from a Jewish organization to cover most of the cost, the catch being that we couldn't have the training on the originally planned dates because it included a Friday which is Shabbat, so we are having it on Sunday and Monday instead. I am so very excited to learn all that we can, be able to get started as soon as we can, and to help Lucy talk to us.

But I miss her so much when we are away from each other! It's like a part of my body is missing. I was in a near panic this morning when she left with my parents. I do appreciate the time away where I am able to be "off-duty" and just read and crochet or knit, or whatever I want to do, but I guess I love being on-duty, as it turns out. It is hard and tiring, and sometimes extremely frustrating and stressful. Sometimes at the end of the day I am so relieved that it is finally over all I can do is sit on the couch and zone out to sitcoms. But no matter how hard a day is, I LOVE IT! I would not give up being Lucy's mom and spending all day, every day with her for anything in the world, and I miss her terribly right now. I know she is happy and having fun with Grammy and Pappy, but part of my heart is missing when she is away from me and the only thing that makes it easier is knowing that we are here learning something that will improve the quality of her life.