So today I figured out how to use Google+ to add pictures to my blog!!! I have been trying to figure out how to add pictures since I started my blog and I am just not so savvy at things like this so it took me awhile. Even Chad wasn't sure how to do it! Yay! So watch out, tons of pictures will be now included!

This is Lucy after she we up from her TWO HOUR NAP today! She rarely naps that long...vacation is rough on her!

Much needed vacation!

Yesterday the Shaffer family arrived at their beach front condo in Duck, North Carolina for their first real vacation as a family. It is just the three of us and we are so incredibly excited to be here and to just relax. Eat good food and relax are the two main items on our agenda. After the year we have had with Lucy's diagnosis and the starting of such an increase in her therapies, not to mention Chad graduating from college and getting offered a permanent position at Minitab, we are pretty whooped...to say the least. So here we are after a nine hour drive!

We attempted to enjoy the beach this morning and it was quite disastrous. Lucy was cranky to begin with and we should have just let her take a nap first, but I thought the excitement of seeing the ocean and the water would distract her...it did not. It just enraged her further. In addition to her crying, the walkway to the beach is in no way handicap accessible so I carried Lucy down in the backpack carrier we have and she didn't like this much either. We are also on the third floor with no elevator. When I booked this cute little condo last summer (at a very reasonable price!) I thought Lucy would be able to walk by now...we didn't even know what Rett Syndrome was at that point.

So, weneed to adapt, change our expectations, and regroup. Maybe we just go for nice walks on the beach, and there is a nice pool right by the condo. We are going to go out for some nice dinners and maybe go to an aquarium. The important thing is that we are all here together sans work, therapy, laundry, and the usualness of every day. We will make  it work!

With her own two hands...

I will not deny that sometimes I use my blog to express feelings to my friends and family...so I can do so in a calm, thoughtful, and constructive way. This is one of those times. Lucy is constantly clapping her hands, flicking her fingers, and some times doing a little wringing. This is Rett Syndrome. A quote from the Rett Syndrome Handbook, provided to us by the International Rett Syndrome Foundation is as follows:

"It is important to recognize that she is not causing the repetitive hand movements to happen. They are happening to her. Even in situations where she wants to, she is usually unable to break up these movements on her own."

Often times, people that do and do not know about Rett Syndrome will make comments such as, "Oh yay she's clapping!" or "Oh, she's playing patty cake! Good job Lucy!" But, as is stated above, and is a fact, she is not doing either of those things, or anything meaningful at all. It is just happening, and I am fairly sure that Lucy knows that very well...better than anyone else in fact.

I would challenge anyone to take a full minute and continuously clap their hands over and over again; that is Lucy's waking hours, every day, almost every minute unless her hands can briefly
distracted by something else, but afterward, it's always right back to that. Regardless of who makes the comment, it feels like somebody has socked me in the gut. The difference comes from people who do not know she is not playing patty cake and the people who do. I have spent a lot of time thinking about why it upsets me so much and how I can express myself without seeming like I am trying to tell people what to do and I have come up with two main points I would like to share so that people who love and care about Lucy might look at her hand movements in a different way, and change the way they acknowledge them.

First of all, as Lucy's family and friends I believe it is our job to let her know that she can be who she is, and how she is 100% of the time for all of her life. I feel that pretending this very obvious aspect of her disability is something more meaningful or more "cheerful" is not fair to her for several reasons. First and foremost because she knows it is not meaningful or cheerful and if we as her loved ones insist on pretending that it is, then she will eventually come to feel like it is wrong or bad, or embarrassing...but she can't stop it, so she would just continue to feel that way. If somebody was having a heart attack in front of us, we wouldn't pretend they were acting out a scene in a play just because that would be easier to handle. It is important to "call a spade a spade" as the saying goes, and move on.

I feel like the motivation for pretending that her uncontrolled hand movements are something else might stem from various reasons:

1. It's sad.
2. It's so obvious and people just don't know what to say.
3. People want to hide from Rett Syndrome, avoid it, pretend it isn't the bastard that it is.
4. Maybe they think it makes Lucy feel better.
5. Maybe they think it makes me and Chad feel better.

But here's the thing, little two year old Lucy never gets to hide from it, never gets to pretend it's something that it's not, and never gets a break from all of the symptoms. And so as adults, and people who love her, I don't feel that it is fair to her that anyone else should get to hide from it either. It is freaking sad, but pretending doesn't make anyone feel better. If she is brave enough to soldier on every day; learning, and working, and struggling, then we all need to be right there with her, accepting Rett Syndrome for what it is and facing that. The reality of this situation is that how we all feel about Rett Syndrome and the sad things that go along with it is not really relevant. It's not about us. It's about Lu and what she needs and what is best for her. For example, the other day, the swallow specialist that we are going to see in New York said to go back to a nipple with her so that she will maintain her "suck/swallow" ability because she has always lost a ton of liquids and is now losing food. This made Chad and I sad, but it does not matter. What matters is that I want Lu to be able to eat and drink for as long as possible! Forever hopefully, and if we have to use a bottle to accomplish that, then we do, and our feelings cannot get in the way of that. We have to just suck it up.

And I will tell you this, I spend every day watching those hands go and go and go, and there is not one second that passes when I watch them that I do not want to scream and cry. I never look at them with anything less than rage, and confusion, and without my heart breaking all over again. But I also look past them, to my beautiful daughter who smiles in spite of them, which is why I am able to shoulder that rage, tuck it away, and get on with business...because that's how she does it.

My request is just that people say nothing at all. They are her hands. They are in constant motion. Yes it is awkward, and obvious, and sometimes tiring just to watch, but we all know that, so let's just step right around them, and let Lucy be Lucy. She never has been able to play patty cake, she probably never will be able to, but who cares! She rocks in other ways, while learning more and more ways to rock each day!

Take that...

In the past few weeks:

1.) Lu has started not only sometimes peeing on the potty after her bath, but now she is pooping too! She has done so four epic times this week with last night's poo being the most epic of all! She was tooting up a storm as I bathed her and I said, "Lu, don't poop in the tubby! Try to hold it. You can do it!" and as I finished up her bath I just kept reminding her to wait until she was on the potty and the moment I sat her down on her little potty she started pooping!

2.) Lucy has started learning to look at us for yes and away for no! We were not having much luck in trying to teach her how to nod for yes and shake her head for no and then when we were at the conference one of the presenters used the looking at you or away method and that is working great! We have been using iPad apps as practice and she loves it! As she continues to become proficient in this imagine all that she will be able to tell us!

3.) Using a Step-by-Step communicator Lucy has helped read The Grouchy Lady Bug and Katy and the Big Snow, two of her favorite books. Lucy has also chosen from activities she has done in the day and used the Step-by-Step to tell her Daddy about her day when he came home from work. (Also a great idea I learned at the conference!)and greeted her friend Celie one morning when we went to the library.

4.) We are fortunate enough to have grandparents with an inground pool and have been swimming almost everyday. Lucy can sometimes float on her backin her life jacket and kick her feet and is doing awesome at practicing standing on the steps in the pool.

5.) And yesterday Lucy got to see a horse for the first time and we met a lady that is going to do therapeutic horseback riding with her.

So I am just really proud of how hard she works and how smart she is and I figured I would just save up and brag about it all at one time. My main message, however, is "Take that Rett Syndrome, you mean, miserable, sneaky, thieving bastard of a foe! Bring it on, we're not afraid of you!"

The Big Easy

Well, here we are finally! Chad and I are at the World Rett Syndrome Congress in New Orleans! We flew in yesterday and it was a breeze...well not the part about leaving Lu! But I did it and we got to see her on Face Time this morning and she and Elmer are having fun with Grammy and Pappy! I was so nervous because I have never spent even a night away from her in her two years of life. When Chad and I go out for some brief alone time I still call mom at least once to see what Lucy is doing and then after a few hours I can't stand it anymore and need to be with her. But I won't get to see her until late, late Sunday night and then she will be asleep and no matter how much I miss her I will not disturb that!

So, when we got to the hotel last night, after meeting up with wonderful Julie Peden at the airport, and then meeting another Rett mommy on the shuttle, we headed out to look for some supper. As we left the hotel we ran into another wonderful woman named Paige Nues who works for IRSF and we said hi and introduced ourselves. She granted us the scholarship for one registration fee and when she realized who we were she just hugged and hugged me and looked at pictures of Lu and was so sweet! And when we told her about our first devastating appointment with Dr. Coffman she said she wants his name and phone number to educate him and I will definitely do that. Then in the next few moments I met the chair of the board of trustees for IRSF!

I said to Chad that it is amazing to me that this whole community exists for support and encouragement and help and these wonderful people will hug you like they have known you all of their lives because the majority of them have been just where you are and felt all of the things that you have felt. Which, it stinks that we have all had to feel these things, but it is such a relief to get to be surrounded by each other and to know that you are no alone. And this feeling of group support comes through strongly just through Facebook groups and email, but then getting to be with the actual people is certainly a million times better! I am so incredibly excited to be here and can't wait to learn all that we can!

Here is my favorite dialogue with Chad from yesterday as we were descending into New Orleans:

Me: "Oh my gosh I am just so excited! We are going to learn so much and it is just going to be so awesome! All of these experts are going to share all of their knowledge with us!" (paraphrased and picture that I am beaming and clapping my hands like a child at the thought of ice cream)
Chad: "You act like we are flying in to pick up the cure!"

Later when I relay this funny quip to Julie Peden she says, "You never know!"

Teaching Lu

Last summer, before we knew anything about Rett Syndrome and assumed that Lu would just "catch up" as the neurologist suggested, I started considering homeschooling her. That is important to remember throughout this post...that I had some of the beliefs that I currently do, prior to the knowledge of such an all-encompassing disability. My thoughts and feelings regarding public school are as follows: I believe it to be extremely boring, first off. I have never, at any point in my 18 total years of education been able to say that I enjoyed it, but I love learning new things! Secondly, everyone learns differently, everyone doesn't always want to learn the same thing, and there is really not a lot of wiggle room in the public school system for "difference". I suppose I mean within the regular education curriculum, but I would say even in special education and eventually, that is where I am going with my thoughts, to discuss the special education system. Third, herding the sheep into a drab building to sit quietly in rows of desks, for SEVEN long hours each day, in order to make them behave in a way society feels they should...nah! Not for Lu I don't think.

Here's the thing...sans Rett Syndrome, I still wouldn't want Lu to feel like she had to be a certain way, do certain things, act a specific way. With Rett Syndrome, she just acts her own special way and that is how it is, and I don't believe in trying to pigeon hole her into trying to act in ways that are impossible for her. Sit still, be quiet? As if! And why should she? However, my initial purpose for this particular post is to express my frustrations with the special education system and the public school system as a whole. I am a member of a Facebook group called "My daughter has Rett Syndrome" and one called "Home Educating My Child With Rett Syndrome". A lot of the families on the home education site, from what I have read, eventually decided to remove their daughter from public school because no one would listen to them, their daughters were not receiving the education that is their right, and they were too worn out to fight anymore. In the other group, I often read posts from parents that are currently still putting up a fight and these posts are sadly filled with anger, frustration, anxiety, and despair. Guess why...because nobody listens to them. I have read several times where the school has removed all academic goals from a girl's IEP because they felt she wasn't capable of meeting them.

So, the two main things that I struggle with are why should we have to fight, and will anyone believe in Lucy like they need to and like she deserves? Now, my goal is almost never to be controversial and absolutely never to hurt anybody's feelings so allow me to make some declarations. First, certainly homeschooling is not for everyone. Fortunately for me I have four years of special education credits and a final bachelor's degree in Rehabilitative Sciences. I have taught (briefly and miserably) in public schools as a block student, I have been an Early Intervention special instructor, and feel confident and motivated in the possibility of educating Lucy myself. I am also fortunate that my husband and I are financially secure enough that I don't have to go to work. So that said, I totally realize that some people want or have to go to work, some people have not had years of education classes, some people, don't want to home school, and some people have faith in public education. My purpose is not to say anyone is right or wrong, it is just to voice my feelings. But even now, at the age of two, I see people underestimating Lucy, while I am standing right there. I don't have faith in other people to have the amount of faith in Lucy that is needed for her to be able to succeed. I just don't and maybe I am a little bit of a control freak about that, but oh well.

So the trick is figuring out ways to help Lucy let us know what she knows. I am already seeing how difficult that can be and how far out of the box you have to think to get things accomplished. So my second thought is that why should it be so hard to get "professionals" to do things the way we want and need them to. They might be professionals, but as I have said before, we are the experts on our children. We know what is best for them and how to get the best out of them...but people don't always listen to us! I feel like what will be best for Lu is just to skip the whole headache of people not listening to me and doing what I ask, and just doing it myself to begin with. And I have not just heard these types of complaints in regard to feeling that they are not being heard from Rett parents! I have a friend whose son gets special Ed services and she basically enters each IEP meeting ready to do battle because the school keeps trying to pressure her into sending her son to the Life Skills class...which is 45 minutes away!

I guess this was a little bit of a ramble and a rant, but it just shouldn't have to be so hard to acquire the best education we can for our children. Things in life are already tough enough for them (and us), why should we have to beg and plead for what is rightfully theirs by law and also have people understand them and believe in them? There's no answer, it just is what it is.

Mother's Day Surprise

I'll save everyone the suspense...Mother's Day made me mad...that was the surprise. On stupid Facebook I read all kinds of things about the day people's children were born and how they look back on it fondly and it made me realize something very sad about the day my sweet tooty bum was born...I feel deceived by that day. Like if that day were an actual, tangible thing, I would want to punch it in it's face. Labor was not going so well, even though my water had broken like a gigantic flood, they had to give me stuff to start contractions and first they were coming too close together, then they wouldn't get regular, and then Lucy pooped! So we had to do an ultrasound and discovered that she was breach, even though the doctors had been saying for weeks that the hard lump I patted all day up by my ribs was her bum and she was doing fine! So one emergency c-section later and I finally got to see my beautiful baby and find out that she was a girl!

Now don't get me wrong, I do still look back so very fondly on that day...the first time I got to look in her eyes, when we found out she was a girl and saw all of her dark hair, and the relief that labor was over and she was out! It was all wonderful and I am grateful everyday that we have her at all! But I feel like that day is like a sneaky, mean girl that likes to hurt people's feelings and make them upset and keeps secrets just to be able to floor everyone with it later...because Lucy had Rett Syndrome all along and nobody knew. It was sitting right there in the room with us as we tried to get her to nurse for days and days, but didn't give us one clue to it's existence and the fact that it was putting the kibosh on nursing. I guess Rett itself is really the big sneak, not so much the day of her birth, but I feel like such a fool every time I look back and think about how relieved I was that the birth was okay and that I believed it was all smooth sailing from there.

I did not expect to have such a hard time with Mother's Day, but I have been mad, and sad, and weeping for 3 days now. I HATE RETT SYNDROME! I hate it so much that I just want to crumble, or explode...but I won't. And this weekend is Lucy's birthday and obviously her first birthday since we received the diagnosis, so I guess I am thinking about that too. I'm just having a mad phase I guess. I'm so angry that everything has to be so damn difficult for her! For crying out loud she's just a baby! But she's not, because she already knows that life is tough and she has to work really hard for everything that she does...and that really pisses me off too. She shouldn't have to know anything like for a long, long time.

I am just having a little bit of a tough time and it came out of nowhere and caught me off-guard which seems to be adding to my anger, that I wasn't expecting it, so I apologize to my faithful readers for the negative vibe I have bombarded you with this time!