Wednesday, May 30, 2012

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.

Tuesday, May 15, 2012

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!

Friday, May 4, 2012

Unexpected gratitude

The other day I was thinking of some little thing that Lucy had done and I was smiling and thinking about how great she is and how hard she works for every little accomplishment. I don't remember exactly what it was she had done that I was thinking about, but as I realized that I was smiling, it occurred to me that in spite of the Rett went on. We are still happy and madly in love with Lu, and always proud of her. And then it also occurred to me that while Rett Syndrome sucks in one million ways, it has also given me a gift. And mothers that I spoke to in the beginning said that there would be "blessings" and positive things about Rett Syndrome and I was like, "Yeah freaking right! Doubtful!" But here is the first gift I realized I have been given: Rett Syndrome has completely taken away my ability to take for granted anything that Lucy does, and I really mean anything! Because nothing much comes easy for my daughter...except for smiling of course!

Here are some examples of things I get excited to tell people:

1.Lucy ate almost an entire bowl of Mac and cheese with tuna, with her fork! I had to load it for her, she wore a splint on one arm to keep it under control, and I am constantly on guard for her to lose her fork, but she did it on her own, and willingly, which is even more important.

2. Lucy has learned to scoot on her bum all over the place and now actually tries to go get things, whereas a year ago she could not have cared less about getting to a toy or trying to nib in stuff on the end table, or whatever.

3. Lucy pees on the potty most nights after her bath!

4. Lucy is starting to be able to stand up so straight, and tall, and strong.

5. Lucy has started initiating interactions with other toddlers while at Kindermusik by scooting over to them and touching them...most of time she is a little rough (unintentionally) and they are a little wimpy about it (except for her buddy Cecelia), but she's getting in there with everyone else which ROCKS!

6. Lucy is getting awesome at making choices by pointing to or touching her choice and also can accurately identify all kinds of animals by touching the right flashcard. So she's learning to let us know that she's in there and knows stuff, and has her own opinions! Tonight I held up the Ovaltine container and the strawberry Nesquik and asked which she wanted with her supper and she chose the Ovaltine by reaching over and touching it!

How terrible must it be for Lucy to not be able to just do what she wants to do, say what she wants to say, or move any way she wants to move. And so as I am constantly keeping that in mind, every little thing she is able to do on her own makes me so incredibly proud that I nearly want to shout it from rooftops! But what I have realized is a gift has actually been shown to me by parents whose children do not have the struggles that Lu does because to them it is just a given that their child will develop as expected and do the things that kids do. And they don't necessarily celebrate each minute feat because, quite frankly, they take them for granted...just par for the course for them. Now, before anyone gets mad at me for saying that, I fully realize that I would likely have been of the same mindset if I didn't have to watch Lucy struggle just to lean over to get a toy, or maintain her grasp on a utensil. I get that...but maybe I would even say, "luckily" I can't take anything for granted.

I appreciate everything Lucy does, I am grateful every day that her situation is not worse, and I am glad to be able to stop and see how precious all of these tiny things can be. I still hate Rett Syndrome with every fiber in my being and if we could banish it tomorrow I would, but even if it went away I would still be able to be thankful every day for the things that my Lu CAN do, and not just fretting about the things she can't do. That's not to say I don't fret because believe me I do...a lot. But I try very hard to not let that fretting take over and then not let myself and others see the wonder that is Lucy May.