I'm New at This

So today was the beginning of my legal odyssey otherwise known as Dear Lord Why am I Such a Jackass?

I may have mention before about my scrape with The Law and today I went to court to declare myself, "not guilty!"

My sweet little brother got all suited up and took me to the courthouse in his brand new lawyer-mobile.

We went in, I had to take off all my jewelry. They confiscated my key chair because it could be used as a weapon. Good times, really.

There was a little confusion and we ended up standing outside the courtroom when I really only needed to go to a window and fill out a form, but we didn't know that for a while. Outside the courtroom was a huge sign that read:

NO

Tank Tops

Hats

Thongs

Cell Phones

Gum

Food

Drink

I looked at my brother very seriously and then pointed to the super-cute sandals I was wearing.

"The sign says 'no thongs.' Do you think these are going to be a problem?"

My brother in his navy blue suit and power tie looked at me, snickered and said,

"They're talking about underwear."

Oh.

I go back in two months for my official Day In Court. Hopefully I'll be less clueless that time. I'll also wear closed-toe shoes, you know, just in case.

Sorry

Ellen has talked about this before--it's one of her pet peeves--but I myself hadn't run into that much until recently.

In a nutshell, you tell someone that your child has cerebral palsy and then they make a frowny-face and say, "I'm so sorry." It's weird. It seems like it would be a good thing to say, but you feel like you need to argue with them--point out that your child is happy and loved. The person feels sorry for you and you want to take their pity and maybe jam it down their throats a little bit. Maybe. You surely don't want their pity. You want them to see your child's abilities, what they can do in spite of adversity. You definitely don't want them to feel sorry for you.

And so for those that do feel sorry for me, I ask you to do this instead:

Be sorry that some people's lives are so narrow that they are unable to see past appearances.

Be sorry that so much ignorance about disability still exists.

Be sorry that some people won't ever get to know the joy of my child's smile because they are too busy looking away.

Be sorry about that.

Earth

Unit on Earth

Key Terms: Earth, Stars, Sun, Moon

Goal: For the child to be able to identify earth, moon, stars, and sun when they see them.

Activities

Painting Earth on coffee filters.





I'd like to have a better picture of this, but Charlie got pretty annoyed with me for trying to make him use a paint brush (I have my nerve), and things got ugly. Allie has a full description and pictures on her site.


3D Earth




Made a salt map mixture and put it on a map of earth to make the land parts three dimensional. Charlie wasn't real crazy about making the map, but he liked checking out the finished product.




Earth in a Box


I took a cardboard box (mine was a diet coke box), cut out a hole, and taped a picture of earth inside. I waited until dark and then lit it up from the back with a flashlight. I also poked some other holes with a pen to represent the stars. Came out magical. Awesome for stimulating the visual cortex in those low vision kids too.



Play Doh Earths




I smashed together play doh to form little Earths. This project really challenged Charlie since he wasn't wild about play doh's texture.

Normally we do five projects with a unit, but allergies assaulted us recently and we just didn't have the energy to do a fifth project. If we had done one, I probably would have done something with glow in the dark stars or maybe made a mobile with the earth, moon, and stars on it.

Book We Enjoyed

Mr. and Mrs. God in the Creation Kitchen by Nancy Wood, illustrated by Timothy Basil Ering. This is a wonderful myth-style story of God and his wife creating Earth in the kitchen. Very creating and the illustrations are gorgeous. Might want to skip it if you're concerned your child won't understand that it's myth.

Flaws

When I went to Blissdom '10 I was privileged to meet Kim the author of the site Mom Tried It. I'd never been to her site before, but Kim herself is warm, funny, and most importantly, full of heart.

Kim has been posting recently about how tired she is of hearing about how women hate their bodies. Hate is such a strong word, and yet, we hear it all day in this country. How sad that people are even turning it towards themselves.

So she decided to do something about it. Kim posted pictures of herself, in a bikini, on her blog--stretchmarks and all--encouraging women to accept themselves the way they are.

Tall order, right?

Well, Kim is right. It's time to stop hating our bodies and embracing them. As parents we owe it to our children to get rid of that sort of thinking. Especially those of us with special needs kids--we need to be emphasizing that there's more to people than the packaging we come in.

So go visit Kim and all the other brave women who are celebrating the skin they're in.

Me, looking and acting like a complete goofball. I really don't like post a picture of myself like this, but today I'm going for it!

Mama Warned Me

When you're a kid, your mother warns you about leaving the house looking less than your best.



"You never know who you might run into."



Yes. Well. Since the dawn of of my mommy-hood I've played pretty fast and loose with leaving the house. I figure there are people walking around wearing curlers in their hair--I'm not going to attract that much attention. Besides, most of the people I know have jobs--the kind that take place in offices.



Yesterday I was forced to admit that things may have gone too far.



I went out in my pajamas--a t-shirt that my mom bought me on a cruise, a pair of red capri PJ pants, and some slip-on tennis shoes. Nothing matched. Not even close. My hair was unbrushed and pulled back into a ball of swirly mess. I had no plans to leave the car--I was just going to hit the drive thru for my daily fix of Chick fil a.



Charlie was wearing a t-shirt and shorts in different shades of blue. No shoes. No socks. I really never let him go out like that, but he was cranky and ready to go and again, I WAS NOT GOING TO LEAVE THE CAR.



But then I remembered something.



You see, on Friday I dropped off a season of Monk at the library and then later that day they called and told me one of the discs was missing. I tried to bring it back that afternoon, but our library closes early on Fridays--please do not get me started on our library's bizarre hours. They're pretty much never open when you want them to be AND they lock their drop boxes when they're closed. What's the point of the drop boxes you ask? I'm wondering the exact same thing.

So I'm driving home and I remember that I still have that disc in the car and I start getting all twitchy because I hate it when I owe somebody something. Makes my skin crawl.

I figure I'll just run over to the library--it's early, no one will be there. Usually there's a lone librarian and a teenager trying to get on the Internet at that time of day.


Well, I was wrong.


Dead wrong.


No only was the entire library staff in attendance as I hauled my barefooted babe into the facility, but also the head of our parish's library system.

They were doing a giveaway of Jazz Fest tickets and I was asked to do the official drawing.


On videotape.


I was like Miss White Trash USA up there, y'all, shaking hands and introducing myself while STILL WEARING MY PAJAMAS.



My friend who works at the library Facebooked me later to tell me that it'll be up on the library's website in the next few days.


Next time, I'll just pay the late fee.

Focus

This weekend we went to Earth Fest in our local park. I'm not sure what was particularly Earthy about it, but there was live music and the usual stuff for kids to play on, so we went. They've even got a water feature that Charlie enjoys.

I met up with a girl I knew in college. We weren't best friends or anything, but she now lives minutes away, has a child about Charlie's age, and perhaps most importantly, she works as an audiologist and does all the parish's screenings for Early Intervention and the school board. She gets special needs, and she's really positive about Charlie and the work I do with him.

I've noticed two things these days:

I've noticed that the people who I spend my time with all fall into one category--people who are accepting of Charlie. They might be people who know something about special needs--through their jobs or personal life, Internet buddies in the same boat, or even old friends who don't seem phased by this new development in my life.

I've also noticed that in the end, we're not that different--any of us. I find myself focusing on the similarities: picky eating habits, preschool worries, and Disney World. It might be a form of coping, but I like to know that we've all got some things in common. At the end of the day, focusing on what I have in common with other people makes me feel happier and more connected.

Tell me about your friends. . . do they understand you and your child? Do you feel like there's common ground? Have your friendships changed lately?

PS: I'm looking for ideas for upcoming Units--please tell me what kinds of things you'd like to see us study!

Too Tired to Blog

We had a crazy weekend. I went outlet shopping with a friend, we attended a concert here in town, we went and hung out in the park all day today, and then friends came over for dinner.

Charlie went here and there--carried some, in his stroller some. Friends have grown accustomed to his differences; I am comfortable talking about them.

I have that delicious feeling of being completely tired from having fun.

There should be a long post here, but instead I am going to go and sit on my front porch and listening to the rain landing on the metal roof.

Change

When I was writing my last post, I went looking around Barbara's site, trying find where she'd written about Down Syndrome. I failed to find it, but became mesmerized by a picture of a child climbing into the bathtub. The picture surprised me so much that I called my husband over to take a look. The child scales the edge of the tub like a miniature mountain climber. I've never thought of that. I mean, it would be quite a feat for Charlie at his current size, but I never even pictured that scenario. Right now I lift him into the tub and in the future I hope to have a roll-in shower. It was black and white in my mind and now, someone had shown me some gray.

You think I'd be used to this by now--the constant change. Ever since I gave birth to Charlie I've felt like nothing is sacred--as if my beliefs have been thrown up into the air to land where they may.

I had to change my mind about parenting. I had to learn that his accomplishments and failures aren't a reflection of my parenting. These are his battles; this is his journey--I am merely a guide.

I had to change my mind about teaching--about learning. I've had to accept that there are things that Charlie will never do--not because he can't, but because he doesn't want to. I've had to accept that I will have to bring him to the learning because he can't always get there himself. I've had to get down on the floor and do things for him so that he can have that experience.

I have to change my mind about independence. In this country we put such a premium on independence, but why? What's so bad about interdependence? Truth is, it doesn't matter--me, my husband, our parents, our siblings--we're all in love with this kid. What do I care if he needs me? I need him too.

I've had to change my mind about intelligence--that holy grail. As someone who was constantly rewarded for her academic achievements, I grew to really value smarts, but I'm starting to see that smarts don't equal happy. I am still completely dedicated to helping Charlie learn as much as he can, but his cognition doesn't rule my world. The ability to find joy in this life is worth so much more.

This boy. . . he's teaching me so much.

Feel Free to Stare

I'm going to go ahead and assume this might be controversial to some of you. In fact, many special needs bloggers have talked about how much they hate this.

For me, however, I invite you to stare. Stare at me, stare at my kid. Soak it all in.

You see, I think a lot is lost by not looking.

You might fail to notice Charlie's slightly pink cheeks.

You may not see his one, perfect dimple.

You wouldn't get to see the joy on his face when his favorite songs come on.

Or the blue of his eyes.

I really do believe that the only way people are going to get comfortable with the disabled is to experience them. Not everyone is going to have a disabled niece, cousin, or neighbor. I've missed too much in my desire to be polite. I've missed the real person that co-exists with disability.

I was struck by something Barbara at Therextras said months ago about Down Syndrome in the community. She related something that I guess I hadn't realized--parents and family members of people with DS actually had to work to integrate them into the community. I grew up with Corky and Life Goes On, so it's hard to imagine a time when people with Down Syndrome weren't a part of the community.

So go ahead--get an eyeful--because me and my disabled child aren't going anywhere and frankly, I'd like you to get used to the sight. Just do me a favor? If you're going to stare and try to figure out what the heck is going on with my kid, put a lovely look on your face. Smile. It's OK if it's fake, I'll take it. He's still a child, he doesn't need pity-face, or worse yet, disgust-face. I know we're not typical over here, but really, how can you resist those eyes?

Many thanks to Cristin who expressed a similar thought recently and made me realize that I'm not completely alone in this.

Unit on Transportation

Unit on Transportation

Key Terms: car, airplane, boat, train, and truck. Others you could do: bicycle or bus.

Goals: Child will be able to recognize all key terms, Child will know that airplanes fly in the air.

Activities

Diaper box car. Allie made one using paper and a full description is here. I made mine using paint because I have a lot of paint. I also flipped mine over so Charlie is sitting in the box--he doesn't walk, so he doesn't need to have his feet out. I was surprised by how much fun Charlie had in this thing. Dad pulled him all over the house.

Flying a glider. Basically, I bought a glider plane at my local craft store for a buck-fifty and then threw it all over the house and the back yard. Spent my time talking about how planes fly in the air and also flew it over his head several times to introduce that concept. If your child has slow or no tracking ability then I would think about suspending it from a string and letting them swat at it (with supervision, of course!).

Take a walk. Point out all the cars, trucks, boats, planes, etc. that you see.

Hey Charlie, can you open your eyes? Mommy wants this one for the blog!

Race cars. We did ours in the hallway. I would push them down the hall then exclaim over whether they went far or stayed near. He gave pushing them a try, but his movement made them go sideways instead. That's OK!

Sorting Cars by Color. Put two different color cars in a box, pulled them out and sorted them. Pretty simple.

Airplane mobile. I cut up shiny gift bags (three for a dollar at Dollar Tree), punched holes in them, and then tied them to a coat hanger. Hang it by their high chair or somewhere else. Charlie's former vision therapist said that items that move and are sparkly are best for triggering the visual cortext so this is especially great for kiddos with low vision/CVI. Again, always supervise your chid if they are close enough to touch the mobile.

Book We Enjoyed

I got a lot of stuff at the library and none of it ended up being that great. I actually got one book that was all about a guy who died on a train. Ugh! The best book I found for this Unit was actually given to us as a gift and it's called, Noisy Car from Bright Baby. I usually hate gimmicky books, but Charlie will sit still for this one which is nothing short of a miracle.

Again, testing is not good for young children, so just have fun and feel confident that the stuff is sinking in.

Teacher in Heels: Part Four

So I officially changed my major to education, but there was no way I was ever going to do that. There were millions of reasons, but one big one: I was scared. Teaching kids is hard and I had been raised soft. I knew that. I figured there was a big chance some kids could chew me up and spit me out proper.



I'd never spent one minute in a public school. I graduated from an all-girls Catholic school. We wore uniforms and nobody talked back. We never took a standardized test and you could actually fail out.



Born and raised in the very Catholic New Orleans, I'd spent some time with public school kids during what is called CCD class. Those kids were sassy. I was not sassy. Sassy gets you in trouble and I wasn't interested in any of that.



So you can see how being afraid of Sassy kids might be a bit of a detriment to a career as a teacher. I knew my limitations.



My junior year of college, things started to change.



"Service Learning" was one of the buzzwords at that time--I don't hear much about it now--and I found myself enrolled in a service learning class.



I sat there in complete horror as I realized that I have to develop a service-learning project and execute it in addition to the other course work. Seventy-five percent of the class dropped that very afternoon including this one kiss-up girl who kept exclaiming over how great the service portion was going to be.



But I'm not a quitter. Chicken, yes. Quitter? No.



We were assigned to the lowest-achieving school in Baton Rouge. I remember clearly one particular question when we interviewed the teacher and students about the school:



"What are your demographics--African American, White, Asian?"

"Well, White would probably be one."

"One percent?"

"No, just one white kid."



Ahhhh . . .



Clearly, I was a fish out of water.



The project went well and I found that it was the best experience of the semester. I was still pretty certain that I would get locked in a closet at a school like that, but did enjoy interacting with students and reading their writing samples.



It was a start.

Picture of me in the Greenhouse during our Service Learning Project--we worked with the Agriculture classes and this was one of their projects--growing hydroponic tomatoes.

Good Things

In no particular order, things that are making me smile:

1. This fantabulous purse created by Mz. Nadine.







2. Cute shoes from Walmart for me.
   

   
   

   
   

   
   

3. Cute shoes for Charlie from Payless. Can I just take a minute and sing the praises of Payless for kid's shoes? I've looked around and they've got the best stuff hands down. Most other places it's over priced and ugly or it looks like some cartoon character threw up on it.
   











4. Jenn's got a public blog again. Jenn and I both blogged over at MSN spaces years ago, but she had to go private after awhile because some students found her blog. Well, she's back and I couldn't be happier--she's smart, sarcastic, and one of the most self-less people I know.




5. Getting my Gazelle out of the garage. I know it's a dorky piece of exercise equipment, but I really do like it and y'all have me convinced I need to take care of myself a little bit more.



6. Azaleas. They are blooming like crazy around here and it's like Barbie's Dream Garden everywhere you look.




7. The Hipstmatic app on my iPhone. It makes your cell phone pics look all old-timey and cool. Most fun I've had with two dollars in a long time.

Picture of Azaleas and weeks taken with the Hipstamatic app. It even makes weeds look good!

Marathon

This morning was exhausting.

I attempted a cute Earth Day craft and Charlie whined and threw his paintbrush on the floor.

I sat down next to him and read a book and he wailed in protest

His good hand stealthily undid his diaper and there was pee on my carpet.

I was tired. Tired of pushing. Tired of trying new things and having them flop. Tired of picking him up all the time. Tired of reading his mind. Just plain tired.

I've never run a marathon before. Never even attempted it. Don't want to. I think a person would have to be crazy to put their feet down on the pavement and try to run for over twenty-six miles. Nutso.

But people do run marathons. They fight their bodies and their schedules and even their own minds to complete a task that they don't have to do. They push through all that for a feeling of accomplishment. To show that they can do something that not everyone can.

Parenting Charlie is my marathon.

There are days when I went to lie down act like I'm not even there. There are times when I wish it were easier, wish someone else could do it for me. There are times when I just don't want to do it.

But oh is the victory sweet.

When Charlie's speech teacher tells me she's never had a kid go as far with augmentative communication as he has.

When his teacher tells me she thinks cognition is his strong suit.

When he takes a few, hesitating steps in the gait trainer.

If I'd had a normal kid, I would have taken it for granted that he would be smart or gifted. Maybe that's obnoxious, but it's true.

If my kid had been typical, I would have applauded his first steps, but I would have expected them.

Yes it's hard. I can admit that. You question your decisions. You don't have the energy to move forward. You have to take a break.

But I always keep pushing. Pushing through the pain, the discomfort. I know I'll find my stride again eventually.

Charlie is my marathon.

Life

Sometimes things happen to people and it's all I can do to hold my tongue and not just spill out my entire belief system on them. You know, pull them aside and just really give them a talking to about the way things are. I realize, however, that other people might not be interested in my entire belief system, so I keep it to myself. Here, however, on my blog, I will say my two cents.

I believe that every life has value. All of them. Lives barely lived and those that flourish. I cannot begin to fathom why some lives are so very short, but I do believe in their value.

This is not about abortion--that is far too big and complex an issue for this little space. Rather, this is about lives that are not seen. Children who don't live long enough or people whose value is harder to see.

These lives matter too.

Somewhere on the net--some public forum where the truly ignorant people give their opinion on things barely related to the topic--I saw someone write, "People should contribute and sitting in a chair and drooling isn't contributing." She was arguing against life-saving blood transfusions although what that was to do with the disabled, I'm not sure.

I'm going to go ahead and say that I don't particularly think of drooling as a contribution. I don't think leaving hateful messages on the Internet is much of a contribution either.

But someone who is sitting in a chair drooling might still be contributing. They might be helping someone realize their life isn't so bad--providing some perspective. They might be a much-needed, constant companion. They might be a brilliant author. They might be helping to stretch the boundaries of modern technology. They might be an inspiration when they smile.

There's just no way to know what sort of lasting legacy a person is creating.

I feel the same way about little souls who leave us too soon.

I know this one from personal experience. I still think about the little girl who passed away while Charlie was still in the hospital. She touched me. Her life was valuable to me. Is there any doubt that others felt the same way?

On the Internet and in real life I hear women recount stories of miscarriage and what I always take away from them is this: that life mattered to that woman. Maybe no one else could see it, maybe it was fleeting, but that life was important and someone will never be the same because of it. How could you measure the impact of that?

This is not meant to be a political statement. I'm not trying to be controversial or take on big issues like "choice." This is just me--one person--saying that while accomplishment may be the yard stick for many things, I don't think it's a good one for this. Each life leaves an imprint on this world and it's not for us to judge the importance of it.

Teacher in in Heels: Part Three

College was good for me.

I will always be so thankful to my parents for sheltering me and for giving me the best they could, but that sheltering left me with a lot of insecurities. I was so unsure of myself--I was worried about my "toughness." Would I be able to make it on my own without any help? It wasn't just the insecurities I had about myself either--people are all too willing to forecast your failure oftentimes before you've even begun.

People make a lot of assumptions about who you are.

People assume that if you've been given a lot, then you can't be tough if you need to.

People assume that if you have a lot of things, that you can't have a lot of compassion.

People assume that if you don't know something, that you can't learn it.

I'm happy to say these assumptions are false. I learned a lot of information in college, but I also learned a lot about myself. I learned how to load a dishwasher, wash a load of clothes, and even vacuum although I'm still not fond of any of those tasks.

I also met my husband.

My husband puts a high premium on ideals. He never babies me and never doubts that I could do something. He is one of the few people with whom I feel completely at ease.

I think that many people would like to hear a romantic story about how I met my husband, but the truth is that we went on a date in 1998 and I think we're still on it. It's not a big, grand love story--it's just an enduring one.

So in college, I learned a lot about myself. I also realized that nothing--and I mean nothing--could get me interested in Accounting. I had to change my major if I was ever going to finish college. After carefully studying the catalog, I found that I had a lot of English credits due to to my SAT scores. If I wanted to graduate any time in the near future, I would need to choose between a degree in English or a degree in Education with a concentration in English. Education seemed sensible. Also, I wouldn't have to take foreign language, in which I was terrible.

I also figured that all of those English classes would help me prepare for the LSAT--I mean, it wasn't like I was actually going to become a teacher, right?

Hubby and I on one of our first dates. Look at that skinny arm! I want to give myself a sandwich!

The Boy Who Bites

When I first started my Facebook page, I asked what people wanted their children to learn and I read all the responses very carefully. I noticed several parents talking about their child biting, licking, putting things in their mouth inappropriately.

As it turns out, I'm having a similar problem with my little guy.

Charlie has always used his mouth more than he should. When he was very little, he used it when his vision wasn't helpful. This meant that he would often lick something up and down, but the neurologist assured us it was fine.

Well, we've worked diligently in the mouthing area, but then Charlie developed a new and terrible habit--self biting.

Let me say that I don't even want to talk about this. I HATE that he does this. HATE it. For me, it's like he's wearing a badge that says "mentally unstable." I feel like I do a decent job at accepting the things that I cannot change, but I this doesn't seem like that.

It started when he was refluxing. We went through a period where he was out of his Slippery Elm and I guess biting provided some sort of relief. Now, he bites as a stress reliever. Loud room full of people talking? Bite. Stretching? Bite.

So, I've been reading and researching and asking the professionals.

Some kids put things in their mouths for more sensory input. This is what Charlie was doing before. As they age, it's best to offer them appropriate outlets. You can encourage them to feel with their hands or give them something appropriate to put in their mouths. Some of the website even suggested fashioning a necklace out of a chewy material if a child is a mouther. No one mentioned gum, but I wonder if this would help with older kids.

For Charlie, however, it seems to be a frustration relief. I read a story about a girl who clenched her jaw in frustration and actually broke her teeth. I clench in my sleep and have had more than one trip to the dentist as a result. The goal doesn't appear to be self-injury since he never breaks the skin.

The recommendations from both the therapist and the neurologist has been to redirect. So, we've been keeping a multitude of chewy toys around and at the first sign of frustration, we hand it to him. This has helped a lot. I'd love it if he were never frustrated, but sometimes we all have to do things we don't want to--that's just a sad fact of life.

I guess I should also add that if he does get into the throws of biting, we rub his upper lip to make him let go. My husband explained that its some kind of pressure point or something. I might not have been paying attention. It works--rub the upper lip.

So there ya go. A rather painful admission (I don't know WHY I beat myself up about this stuff), what we're doing about it, and some pictures of Charlie sorting Easter Eggs.