Life With Tics

I've backed up a bit to tell our story with our daughter's tics. You can read earlier posts about our journey here and here.

In February of 2007, our then 3 year old daughter was playing a game on the computer. She kept sort of shrugging her shoulders up and rolling her head back. Over and over. I finally decided that maybe her hair was bothering her. My poor baby has never had much hair, but at this point in time the back of her hair was finally growing out a bit in the back. I thought it might be tickling her neck.

"Is your hair bothering you?"

"Yeah."

So I somehow managed to get her hair into two tiny ponytails. How cute! I took a picture since it was probably the first time in her life she had enough hair for any kind of ponytail.

And then I forgot about the whole thing.

I'm really glad I took that photograph because it helped us know just how long this had been going on when we looked back at the date on the picture. In order to be diagnosed with Tourette's Syndrome, a person must have both motor and vocal tics for a period of at least one year. By the time we meet with the neurologist next month, Little Bit will meet that criteria. That's why I'll be really surprised if this is not Tourette's. But then again, I'm no neurologist.

After that (since we still really hadn't caught on) I couldn't tell you what she did until at least July. That's when S told me to watch how "nervous" she was and we visited our pediatrician. Since that time I have been keeping a journal of the tics that we see. Some of these are hard to explain:

raising her eyebrows, panting, licking her shoulders, coughing/clearing her throat, moving her head/neck, shrugging one shoulder up and down, facial movements, eye blinking, jerking head back/chin up, tucking her chin down to her chest, looking at her right arm, exhaling in a huff, repeatedly touching the person near her, and licking. Those are just the major ones. All of these stayed for a period of a few days to a few months. They come and go. They come back after being gone for months. She does several of them at once or just one. They get worse when she's tired, scared, stressed, or excited. She does something every day. Some days it's not really all that bad. Some days she just has to be exhausted at the end of the day from all the calories she has burned.

Sometimes the tics scare us. Like when she licked the laundry soap scoop before I could catch her. Or the open pair of scissors. Sometimes the tics are frustrating. Like when she cries before she goes to sleep that she "can't stop." Sometimes the tics hurt. Like when her fingers are sore from clenching them all day. Or when her throat hurts from tensing up her muscles all day. She complained about that one. "Mama, it hurts when I do this (demonstrated)." I told her she needed to stop. "But I need to do it." Those days break our hearts.

A diagnosis won't change our lives. Our life is already different. In a way the doctor's appointment won't really make that much difference. And it's kind of a big thing. But not really.

She's still our daughter. She's healthy. She's funny. She's smart. And we love her.

We're Taking Back the House

My big night out for my birthday was wonderful. Thank you for all the well wishes and for letting me know it was not terrible to use my children as bait to get chocolate cake for myself. You make me feel better, you really do.

So here's the book I chose from the bookstore after much searching:

I know some would say it does not make sense to buy something to ADD to your house when the point is to TAKE AWAY FROM, but this book is really good. It's not the throwing out of stuff that is my problem really. It's the classifying and organizing what's left that I am completely lost on. I'm not ashamed to say that even as a college grad with many years experience teaching under my belt that I had my big sister come and help me organize my files at school one year. I just don't have that gift and she really, really does. So this book is going to help me now because my sister's boss likes it when she goes to work instead of over here to organize my house.

Oh, and as I sat reading my new book, Sweetheart wandered in with her own inspiration:

She's been dreaming of organzing her room and how neat it's going to look when we're done...just like Brother and Sister Bear's room. She just pores over the page when they get all done cleaning. My girl.

But my inspiration are these pictures. I cannot get enough of looking at these pictures from Sara's old apartments. They make me want to get up and clean my house and get rid of things and if Sara checks her site meter, she probably thinks I'm a stalker. I apologize...but my house is going to be so cool when I'm through. And it's not like I can just go spend the night at Karen's house anymore.

Karen was a friend of mine growing up. Her room was beautiful and every time I got home from her house I started cleaning my room. My mom said she was going to let me stay over there every weekend if it make me want to clean! It's just that her room was so uncluttered. She had a yellow bedspread and canopy and white and yellow furniture. She had perfume and cosmetics on top of her dresser. I had toys, stuffed animals, and an older sister on the other side of the room. Oh well.

Karen's room used to inspire me, now I stalk around Sara's flicker page. Hey, whatever works. And there other influences right now: these tiny houses gave us a good laugh at first, and later a good conversation about "how much do we need?", and then S pointed out how nice and simple the Ingalls' house was on Little House on the Prairie, season 1. Then S walked into the living room last night, turned out all the lights, and set our camping lantern down. Oh, he is funny. I said simple, not rustic, honey.

So I guess this is kind of like my New Year's post that never was...we will be decluttering and simplifying here at the House Revised. I can feel the breath of fresh air right now...

I'll let you know how we're doing.

P.S. We already decluttered the garage today. We are off to a great start!

My Birthday...

...is not at the very best time of the year. All my life it was either the day we went back to school from Christmas break, or the day before. "Wake up--Happy Birthday--hurry up and get ready for school." What a great way to celebrate. (By the way, there is NO school today here! The power of homeschooling.)

And if you think my parents ever let me stay home because it was my birthday, then you don't know people like my parents. The MOST I ever got out of them, and this was only because I was the third child and they were tired and old, was scheduling my orthodontist appointments so that I would miss first period--Algebra. Which, considering that I had to re-take Algebra in summer school might not have been the best move on my part. But anyway...

I shamelessly had the children call my dad this morning to ask, "Grandpa, will you help us make Mommy's cake?" Isn't that awful of me? I told my dad it was because the girls are a little disappointed that there is no surprise element to this day. They aren't getting me a present and they are just wanting to surprise me with something. Which is all true--but I could have helped them make the cake. I just think you shouldn't have to make your own birthday cake, you know? S can't help--he's working 12 hour days right now. If I wanted that German Chocolate goodness anywhere near my actual birthday I had to take action!

Christmas/my birthday is a stressful time for my husband. He either has zero ideas for presents, or $200+ ideas for presents. I helped him out this year by telling him what I wanted to do for my birthday. We are going to eat at a nice restaurant (Nice=you sit down and they bring you the food.) and then to the bookstore for me to pick out my own book while he watches the girls and I can actually LOOK at the books.

Later today I am going to get the party decorations down and set the girls free with tape. It should be interesting.

Have a good weekend! I'm off to enjoy the day by cleaning house.

The First Thing

I really feel the need to document our story here. We do not have a diagnosis yet, but we are dealing with symptoms every day. I really hope these posts will help someone. And it's good for me to "write" it all down.



When Little Bit was 23 or 24 months old she started blinking. A lot. Hard blinks. Lots of people noticed, including us. I worked in the mornings at a preschool and she was in the toddlers class. The class only had 4-6 children in it and 2 teachers. Her teachers and even a substitute all asked me about her eyes. We guessed at first it was probably allergies. Then I became concerned that she had the same condition as my aunt and grandmother with very dry eyes. My aunt had to have surgery to fix hers. Can't remember what it was called now. I asked the pediatritian the next time we were there. He looked at her eyes and said, "They don't look dry to me."

I was so irritated. Obviously something was wrong with her eyes, couldn't he see that? The other thing that had us concerned about her eyes was how she reacted to the sunlight. When our older daughter, Sweetheart, was small she would always bury her head in my shoulder whenever we first walked outside. S gets headaches from the sunlight and it really bothers him if he doesn't wear sunglasses. We just figured she was the same way. We bought her sunglasses. There, problem solved. But Little Bit reacted a bit differently. She screamed! Like she was in total pain. Also huge tears ran down her face. Not tears from crying, but tears from her eyes watering.

So, off we went to the eye doctor. They did all the standard tests on her and determined her eyes were perfectly healthy with the best vision possible for her age. So, why does she blink all the time and scream when the sunlight hits her face?

The doctor told us that she has really pale blue eyes so they let more light in than darker eyes. It probably hurts--get her some sunglasses. We did and in a few months the blinking had gone away. We put it out of our heads.

We would remember the blinking in about another year and a half.

Being Ready

My first job was vacuuming our church building with my sisters on Saturdays. I was in 8th grade and my oldest sister would drive us up to the church building and we would all split off into our assigned areas to begin vacuuming. It is a large building, but there is no way it should have taken us as long as it did. With no parents or adults around, we goofed off... a LOT.

But one year I really found out what it was like to NOT be busy at work. Our new principal chose me and one other teacher to be "pull-out" teachers. All day long we were to pull small groups of children from their classrooms and work with them in a smaller setting on skills needed for them to pass the state test. Such a noble task. We couldn't start pulling students until about a month into school, however when they took their first practice test. Then we could look at the data and determine who needed the most help. So for a month (and throughout the year each time they were testing in classrooms) we had nothing to do. Or very little.

It was our little secret. We were still teachers, but we had no lesson plans, no papers to take home and grade, no team meetings, etc. We were free! My friend and I decided right then and there that no one needed to know how un-busy we were at certain times. Everywhere we went, we carried our clipboards. That makes you look like you are on your way to do Something Very Important. Also, at the end of the day we loaded our purses into our canvas every-teacher-must-carry-one bags and went off to our cars looking to all the world like we had a load of stuff to do when we got home. Just like everyone else.

Looking busy can be hard work! I always felt guilty as our church secretary when I was all caught up on things in my office and had a few minutes to e-mail or surf or pay bills for home. Not that our minister would have minded--but I was used to that deceiving "you must look busy at all times" mentality so I always had my mouse ready to click off of whatever page I was on in case someone walked into my office. It's not that I was doing anything wrong...I just learned that lesson very well at my other job.

Now that I'm home, if my husband comes home unexpectedly, I find myself jumping up. I might be reading a book or watching TV or reading blogs...but I feel like I must be busy or at least look busy...so I jump. It's almost an instinct reaction. I don't believe that my husband would in any way be upset that I was sitting down. And I know that all the rest of the day I have certainly been busy enough. But I feel the need to LOOK BUSY. I guess it's a holdover from 15+ years of working for a boss.

The Bible tells us that Jesus will come at a time that is unexpected. Matthew chapters 24 and 25 warns about being ready when the bridegroom comes.

"Watch therefore, for you know neither the day nor the hour in which the Son of Man is coming." (Matt. 25:13)

And here is my question....Will you be ready, or only look ready?