Will Wonders Never Cease?

I am just sitting here, quietly, contemplating how much my daughter has grown this year.  I don't mean her height or weight, though she has grown that way as well.  She has matured this year, her thirteenth year.

A couple of days ago we received a package from my Mom.  Haley loves packages.  We had to open it. 

Actually Haley's Big Sis grabbed it and started opening it, so I can't really put it on Haley. 

My Mom had wrapped the presents inside and labeled them, of course.  Haley can recognize her own written name now, so she new exactly which ones were hers.  She wanted to open them, but I told her that we were going to wait until Saturday.  "Saturday is Christmas Day, that is when we open presents."

That was a bit hard for her, but I asked her to put all of the presents under the tree.  She felt important doing that, so it was OK.  We have never put presents under the tree.  I was fully prepared to hide them if there was a problem, but they are still there.

She sits in that room next to the tree.  She sits in the chairs that flank the tree, or she sits on the floor in front of the tree.  She has quite a collection of toys that she has been playing with while she sits there.  If someone walks by she will point to the presents.  She says "presents" or "Christmas" or her version of "Saturday," which really doesn't sound much like Saturday. 

She hasn't opened them. 

I think if any of us were to tell her that she could they would be open in a heartbeat, but she is being very patient.  I think that she is showing a new level of maturity that I have never seen in her before.

We changed up the Holiday Season on her this year, first by having Thanksgiving here and having Grandma and Grandpa come to our house.  Now we are planning to go to their house after Christmas.  She knows we are going. 

For a while she seemed more excited about going to their house than she was for Christmas.  I have both occasions written on the calendar that hangs on the refrigerator.  She points to the days that are marked Grandma and Grandpa's House, but she hasn't been pointing to Christmas.  I have explained the timing to her several times.  I say that we are going after Christmas, after we open our presents.

I think she has finally accepted it.  In desperation about a week ago I actually put on the calendar the day that we would pack so that she would stop asking to pack her "case."  I think she has come to terms with the timing.

I actually think she gets it.

I am so proud.

The Year Without a Santa Claus

Spoiler Alert:  If you believe that Santa Claus comes down your chimney and puts all of the presents under the tree and in your stocking you should probably stop reading this post and go get yourself a nice eggnog.

Our Christmas Eve's go something like this, we have dinner and then we open one present each.  That present is almost always a pair of pajamas.  This is also a tradition that came from my childhood family traditions.  We put our new pajamas on and then before bed we read The Night Before Christmas by Clement C. Moore.  I wrote about that tradition on this post.

A couple of years ago we added something to our Christmas Eve.  I rented a movie that had come out in 2006 called The Nativity Story.  If you haven't seen it I highly recommend it. 

After we get our pajamas on we watch The Nativity Story and then we read The Night Before Christmas and then we go to bed.

I don't.  I put Haley in bed and then I go to church.

I play hand bells in our church choir and I always go to the Christmas Eve service at 10:00PM.  It is a time for me to truly reflect on why we celebrate this holiday.  It is a candlelight service and it is beautiful. 

I enjoy it. 

I hug everyone before I leave and then I come home and get the presents out from their hiding places in the garage and I put them under the tree.  I fill the stockings and then I go to bed.

Last year after I had made about six trips back and forth from the garage to the living room carefully, quietly placing the presents under the tree and filling the stockings I was coming in to the house for the last time when I heard a small sound like the coo of a dove...

I looked up and there was Haley looking at me over the low wall at the top of the stairs.  I smiled at her and then went upstairs and gently nudged her back in to her room.  I covered her up and gave her a kiss and closed her door.

I breathed a sigh and went to bed.

After the festivities the next morning Haley's Big Sis came up to me.  She gave me a sheepish look and said "I saw Santa Claus last night."

"You did?"

"Yep."  She said.

So the cat is out of the bag.

The Countdown Snowman

We have a Countdown Snowman.  Every day Haley puts an ornament on his Christmas tree and Snowman announces how many days there are left until Christmas.  Snowman starts counting at 25 days until Christmas.

Snowman was not out 25 days before Christmas. 

I didn't have enough C batteries so I opened the box and put Snowman in the garage and put C batteries on the grocery list.  I eventually got the C batteries and then Snowman continued to languish in the garage until recently Haley saw him and the jig was up.

We have a love/hate relationship with Snowman.  Haley loves him and frankly I think the rest of us hate him.

It's a cute idea, but imagine my child, who can watch the same video over and over again with a motion detecting sound making object.

To tell the story of the Snowman I have to tell the story of Rhonda.

Rhonda the Reindeer used to come out every year at Christmastime too.  She doesn't anymore. 

She was also a cute idea.  An idea no doubt conceived by a well meaning person who didn't have a daughter like Haley. 

Rhonda was a stuffed reindeer with wings and arms that moved as she played Christmas songs.  Rhonda was not a motion detecting sound maker. Rhonda was a sound detecting sound maker.  She would play more than one song, which I thought would redeem her, but unfortunately it didn't.   The kinds of sounds that would prompt Rhonda to break into song were loud noises like claps, dropping things on the floor, sneezes, coughs, yells and the like. 

Haley couldn't clap loud enough. 

No matter how she tried Haley couldn't smack her own hands together loud enough to get Rhonda to perform.  She tried, but I really didn't want her to hurt herself.  I clapped for her for a while, but then my hands hurt.  If Rhonda didn't start playing Haley would get upset and start crying.  If she cried long enough she eventually got into fit mode and then when she screamed at the top of her lungs guess what would happen. 

Rhonda would play.

The next step, which I am sure you could surmise was simply to scream at the top of her lungs.  Rhonda would play a song and then stop.  Haley would scream and Rhonda would play another song.

After enough of that to make me want to curl up in the shape of a ball and whimper, I got out two wooden spoons.  I taught her to hit the two spoons together.  Sometimes she could do it so that Rhonda would respond, sometimes she didn't, but at least her odds improved. 

One year I got one of those plastic clappers in the shape of tiny hands that Haley could just shake.  It worked pretty well.

The details are fuzzy, but at some point I stopped getting Rhonda out.  At this point I am not sure if we still own her, but I think we do.

So Haley has some memory of Rhonda the Reindeer and when she wants Snowman to respond she jumps up and down and claps and tries to make noise.  I have to show her again that all she needs to do is wave her hands in front of Snowman and he will count down the days for her, because it is motion detecting not sound detecting.

I put Snowman on the top of the refrigerator after she has listened to him tell her the number of days left until Christmas about ten times or so.  That used to be pretty safe, but she is getting tall.  I am afraid she can reach him.  She likes to put the ornaments on the tree and then take them off of the tree and listen to Snowman count up and down alike.

I wish I could find a place in this house that he could live where he might tell us the days until Christmas every once in while, not so much that we want to throw him across the room.  I haven't found that place yet, so I just turn him off.

The Night Before Christmas

When I was a little girl my Mom read The Night Before Christmas by Clement C. Moore every Christmas Eve before we went to bed.

I didn't realize how important that tradition was until I was in college.  My freshman year of college was the first time that I had ever been away from my family.  The college I went to was not that far away from my hometown, but once I went to college I stayed there until Thanksgiving. 

I went home for that holiday and then I went back to school.  As Christmas approached I had a serious case of homesickness.  My roommate and I were feeling sorry for ourselves  and one night after we had gotten into bed and turned out the lights we started talking about our Christmas traditions. 

I told my roommate that my Mom had always read that story to us.  I can't remember why now, but I started reciting the story. 

I had it memorized. 

Word for word I recited the story like I had the book in my lap, but it was dark in our room and the book was back home.

The story has always been a part of Christmas.  I have read the book to my girls every Christmas Eve from their very first Christmases.  I can still recite it from memory so I can hold the book open to them so that they can see the pictures.

Last year Haley's Big Sis decided that she wanted to read it.  It was kind of hard for me to give that up, but I did.

Today we received a box from my Mom in the mail filled with wrapped boxes.  There was a copy of the book inside, it wasn't wrapped. 

We opened the book and I realized that it was the kind of book that you can record your own voice into.  I immediately thought that it would be so cool to have a recording of my Mom reading the story.  I turned a page, but there was no sound.  I thought maybe that she had expected me to record the story, which also would have been cool, I was disappointed though. 

Haley took the book. She has a couple of books that can be recorded and she started pushing the buttons.  Haley wanted to read the book so she started turning pages and that is when I heard my Mom's voice.  I was afraid that she had recorded over the first few pages. 

I asked her if I could look at the book.  I read the instructions.  It said that it works best in a room with good lighting.  I turned on the light and then closed the book and opened it again.  My Mom's voice told me that the book was a gift from her read in her own voice.  We turned the page and the story began.  We hadn't ruined it after all.

Haley has listened to the story, read by her Grandma many times this afternoon.  It is sitting on the coffee table in the front room and the lights are on.  She goes in to that room and listens to the story and then comes and finds me and says "Grandma read."  or "Read book."  She loves it.

So there is another tradition that has changed and changed again.

Thanks, Mom.

The Nativity

Another Christmas tradition.

When Haley was little I put out a small porcelain Nativity scene by Precious Moments.  I really loved that scene, it was a gift from my Mom.

Haley has always loved little figurines that she can hold in her hand.

The first time I saw her carrying Mary and Joseph around I decided that it wasn't safe.

Luckily at that same time Avon had come out with a plastic Nativity scene that looked just like it. I gave it to Haley and it has been hers ever since.

Every year I get it out and set it up somewhere that she can find it.

This year it is in her bedroom.

Over the years I have found each figure in a different place around the house.

Sometimes she sleeps with them.

When it's time to put away the decorations we go around the house and gather up her figures and box them up for the next year.

Change is good.

The Gingerbread House

Another Christmas tradition that has changed.

Our church has a wonderful tradition of making gingerbread houses together. We have a member that has taken on the job of coordinating the efforts to make the small simple houses on round cardboard bases. She has teams that make the dough and cut it into the proper shapes and then they use frosting to hold the pieces together. After the children's Christmas program every year people gather and pool together the candy that everyone shares to decorate their houses. It is a wonderful event.

We have gone a couple of years and the first years were fine.  We have great pictures and great memories. This was back when Haley's Big Sis did the decorating and Haley was small enough that we could just hold her, or walk around with her. When Haley got older something happened.

This beautiful event was all just too much for Haley, she has never done very well with crowds anyway.


I think the combination two events one right after the other without a meal in between didn't help. Haley was hungry and the only thing to eat was the candy. That is what she ate. We tried to get her to stop, but then she started spiraling into melt-down mode and since Big Sis wasn't done decorating the house we stayed and let her eat more.

Can you say Sugar Rush?

Then when we got home with the house she still wanted to eat it. I wanted to use it as decoration for a while, but it became too much of a temptation and had to have an early demise.

So we don't participate in this particular holiday tradition any more.

Chocolate Balls

Today we made chocolate balls.  My husband's Mom has made chocolate balls at Christmastime for as long as he can remember.  We enjoyed hers for several years and then we respectfully requested the recipe.

There is quite a process involved in making chocolate balls, it is kind of like a production line.  My husband and I made them together for years and then Haley's Big Sis joined in the fun when she was old enough.  This year Haley wanted to help too.

My husband measured out the ingredients that consist of graham cracker crumbs, powdered sugar, peanut butter, margarine, coconut and chopped nuts and Big Sis mixed them together. We gathered around our tall round bar table and began to roll the mixture into balls.  Haley stood there expectantly dramatically sniffing the mixture and proclaiming that it "Smells good."  Her Dad asked her if she wanted to help roll them into balls and she actually jumped up and down excitedly and said "Yeah!"

I took a bit of the mixture and worked it together so that it wouldn't fall apart in her hands and then I handed it to her.  As she started smashing it between her palms I got a little into my hands and showed her how to rub her hands together to form a ball.  She was using a little too much force so I made her another one and then I held her two hands and helped her to gently roll the dough.  When a ball formed I told her that she had done it and she place it on the waxed paper.  She was thrilled.

I asked her if she wanted to do it again and she said "yeah."  I picked up some more dough and out of habit I created a ball and handed it to her.  She immediately set it on the waxed paper, having judged it complete.  That became our process.  I would roll a ball for her and she would place it down next to the others.  She had a great time and when all of the balls were formed she wanted me to help her wash her hands.

My husband took the tray to the refrigerator and Haley opened the door for him.

Later after the balls had chilled my husband began the process of melting the chocolate coating.  Haley's Big Sis added the chocolate and supervised from then on.  Haley would come by now and then and check on the process.  At one point we needed a spoon and Haley went to the drawer to get one for us.  She really was a big help.

We had a lot of fun this year putting together our favorite Christmastime treat.  All four of us did it together. 

Yet another tradition has changed, for the better.

Christmas Traditions

Every family has traditions around the Christmas holiday, our family is no exception.  The exception is that our traditions have changed over the years.  I have already mentioned our Christmas tree tradition that has changed in this post and the fact that I decorate by myself.  There are some other traditions that have changed as well, I will be sharing a few of those over the next several posts.

Some families put presents under the tree before Christmas day. 

We don't. 

We wrap all of the presents ahead of time and hide them, then on Christmas Eve after Haley has gone to bed I put them under the tree. 

Haley must open presents. 

It doesn't matter if the present is for her or not.  If I wrap a present for any gift giving occasion I need to hide it immediately.  I know this from experience.  Haley has opened many presents that I have wrapped that were never intended for her. 

If I go to a party and bring a gift home that I have received I have to immediately take it out of the wrappings and hide them away before I bring it into the house.  If she sees the wrappings she launches into "Present, present, present." 

Actually, truth be told, Haley must open boxes.  They don't need to be wrapped.  She always wants to know what UPS brings even if I tell her it is only soap.  She has to see it.  I have several boxes that I intended to keep to store things in that have been unceremoniously opened.  So no unopened package is safe.

My favorite thing about Christmas morning when I was a kid was to come down the stairs and be blown away by the amount of presents under the tree.  I remember a few presents under our tree before Christmas day.  They were usually the ones that my brother and sister and I gave to each other, but all of the other presents were saved for that big surprise on Christmas morning.  We are keeping that surprise alive in our house, I think there is some value in that tradition.

Ticket to Ride

On Sunday we went for a ride on the Holiday Express.  This years train was pulled by the 4449 Daylight, one of Haley's favorite steam engines.  The day was very rainy, but not cold. 

Haley loved the ride as evidenced by her brightly colored cheeks.

She loved that she could hear the Daylight's whistle from her seat in the plush festively decorated car.

She got very excited when Santa Claus came through the car with jingle bells ringing saying "Ho Ho Ho," but she was most excited to go shopping.

The Oregon Rail Heritage Foundation set up a tent so that people can wait in line for the train out of the elements and also so that they can peruse the items that they are selling to support the building of the new roundhouse that will some day house the SP 4449 Daylight, the SP&S 700 and the OR&N 197.  Haley gleefully took every written piece of information about her favorite engines which included the Newsletter that updated us on the state of the new roundhouse.  The newsletter is well done and it makes us really excited to see construction begin.

Haley loves shopping.  She kept talking about shopping for clothes, which she did, but shopping for anything with the Daylight, it's logo or the 700 and it's logo on it is her favorite kind of shopping.  Haley bought two t-shirts and a new jacket.  The first picture on this blog is one of the t-shirts she got.

This is the shirt that shows all three engines.

Here is her Daylight jacket.

I have been eyeing the jacket for awhile, I just really wanted to try it on her so this was the perfect opportunity.  Haley also got a DVD about the Holiday Express.

We would love to support the building of the new roundhouse even more if we could.  The only times that we can experience these engines is when they are out on excursions, the rest of the time they are locked up tight inside a building that is too dangerous to visit.  We look forward to the day that we can go to OMSI and buy a ticket and visit these big beautiful engines whenever we want to, but until that day comes we will continue to do our part to support the work of the ORHF by letting Haley shop.

A Time to Every Purpose

Last night I went out with four of my girlfriends.  We talked candidly about ourselves and our families.  We laughed a lot.  I had a wonderful time.  It was a well timed diversion.

I was out rather late and when I got home I watched television (Hulu) for a while before I went to bed.  Haley woke me up twice in the night to be changed and tucked back in bed.  So I was tired this morning and I slept in.

Apparently nothing happens around here without me. 

Haley needed to be changed again when I woke up and she hadn't eaten breakfast.  She came downstairs with me like she usually does in the morning and we had breakfast.  Her Dad came in from the garage and started getting his lunch ready, because he had been up since morning and was on his normal routine. 

Haley got up from the table and opened the freezer.  She decided that she needed lunch too, never mind that there was still cereal in her bowl.

I tried to explain to her that she was eating breakfast and that she didn't need to eat lunch, just because her Dad was eating lunch, but it didn't matter to her.  I offered her some of the grape salad that I had left over from a potluck that I attended last week.  That sounded good to her, so she ate it.

I took a shower and got dressed and then sat down at the computer and she brought me a package of pasta.  I went through the whole spiel again about how she didn't need to eat lunch, but she wouldn't quit.  I reheated some pasta and sauce that I found in the refrigerator and set her up at the table again. 

I don't know what I would do without a microwave!

She seems to be satisfied, for now.

It's Not All About Her

Haley is shy.  We took her to a Psychiatrist a couple of years ago and that was his diagnosis.  He never mentioned the elephant in the room, her developmental delay, he just said that she was Super Shy.  I know where she gets it.  I am shy.  His theory was that because I am shy and when he was younger her Dad was probably shy that the combination of the two of us shy people made one really shy kid.  The theory doesn't work for her Big Sis, but whatever.

I am shy.

When I meet someone for the first time I am quiet and I might not even look them in the eye.  In the past people have thought that I was aloof.  I don't share my feelings easily, ask anyone that knows me, if I start to talk about myself I turn a bright shade of red and my neck and chest turn three shades of purple.

Once I know someone well I open up.  Some of my friends probably don't think that I am shy, but deep down I am.

Even though this blog is about my daughter, ultimately it is also about me.  I can't write about my daughter without putting a lot of myself into it, especially because what I know about her is filtered through my understanding of her.

I am open in this blog, I am honest.  I may not write about every little thing that happens to us, (obviously since I haven't written a thing in four days) but what I do write about is honest.  I am trying to be more honest in my everyday life as well.

The person I was five years ago would never have been able to write a blog.  I was a different person to everyone who knew me.  It was exhausting.

In the last couple of years I have decided to be who I am, all of the time.  There are people who thought that I had changed, but the truth is that I have always been this person, I just have not always let everyone know that.

It makes life somewhat simpler to be yourself.  I don't try to filter myself for each person I am with.  I let people know what is going on inside of me.  I have friends that read this blog, but I also have friends that don't.  They don't get as much information about Haley and our life together as my readers do, I have to remember that.  I try to share our experiences with them like I do with you. 

It also means that I am honest with my feelings sometimes when people ask me how I am. 

Life is not always easy with a child that has special needs, sometimes it can be really hard.  When people ask me how Haley is doing I usually say that she is doing really well, because she is.  Everyday seems to bring new and exciting changes.  Lately she has really been showing incredible patience.  I think she is learning that when we tell her something is going to happen in the future she can believe us.  That is a great improvement.

I like to share the joys, but sometimes I also share the problems.  People smile and nod and I can tell that they are trying to imagine what it must be like for me, they won't be able to, but I appreciate the fact that they try.

All of this is to say that I haven't been writing for a couple of days because sometimes my everyday life takes over and even if I have time to sit down at the keyboard a cute little story doesn't always come to me. 

I don't try to sugar coat my life for you, my readers, but sometimes it helps if I sugar coat it for myself.

She Saw the Daylight

In our area we are blessed to have a steam locomotive that is operational and is run on special occasions.  One such occasion is the Christmas season.  Every year we like to take Haley for a ride on the Holiday Express that is pulled by either the 4449 Daylight or the SP&S 700. 

We wanted to go this weekend, but Haley's Big Sis is not feeling well so we are planning to go next weekend.  We bought our tickets this morning.

My husband always takes Haley train watching on Sundays and he really wanted to take her down to see the Daylight pulling the train today.  He was concerned that she would be upset if she got to see the train without getting to ride it. 

I didn't know what to tell him, but I said that maybe she would understand if he just told her the truth.  He decided to take her.

When they got home Haley came in the kitchen and started telling me all about it.  She told me that she saw the Daylight and that she walked and that she heard the engine's whistle.  She told me that she could smell the steam and smoke and that it smelled good.  Her Dad came in a few minutes later and prompted her to tell me more.  He told me that she wasn't scared.  At all.  He said that she walked right along side the engine and never asked to go back to the Yukon. 

He said that he really enjoyed the whole trip because she really enjoyed it.

I asked him if she was upset that she didn't get to ride it.  He said that she wasn't.  She talked about riding the cars and he told her that we had tickets for next Sunday.  She said "tickets" and that was it.  She was fine with it.

A few hours later. after she had spent the afternoon looking at pictures of the Daylight and the Holiday Express online she came downstairs and found me again.  She started telling  me how she had waved at the engineer of the Daylight, his name is Doyle.  She told me that she walked and that she had fun.

Well, I will let her tell you herself.

O Christmas Tree

When Haley was small we had a real tree and we had lots of beautiful Hallmark ornaments that we had given each other as gifts since we were married. We had those ball ornaments that will break if they touch each other. The tree was decorated with cute little figures.  Haley loves little figures. She likes to hold them.  She reached for one and pulled and the entire tree came down on top of her, breaking most of those beautiful delicate ornaments.

So now our tree is small, simple and unbreakable.

We have an artificial tree that is about five and half feet tall and we decorate it the same every year. I bought three sets of unbreakable ball ornaments that are blue, red, green and purple with gold designs. I bought six golden crosses which are also unbreakable and a set of 12 plastic icicles.  That is all we put on the tree besides lights and a garland of sparkly gold.
 
I think it is pretty and the girls can help me decorate it; I don't worry about them breaking anything or putting an ornament in a wrong spot.  It is easy and simple.  It speaks to many compromises I have made over the years. 

We decorated the tree today. 

Haley got to help put the ornaments on. 

I have to guide her hand because she can barely hold on to the ornament let alone find a branch and then leave it on the branch. 

She put two on with my help and then she was happy to just hand them to me.

I like it when she feels like she is helping and she doesn't get stressed out because she can't do it herself. 

Our tree is also quick, I think we decorated it less than thirty minutes.  Again, no stress.

The Next Thing

As I was helping Haley get dressed this morning she looked over at the tiny calendar that hangs on the wall by her bed and said "Christmas presents coming."  So I guess that is what's next.

Then we went in to the bathroom to comb her hair and brush her teeth and she kept talking about Christmas presents.  I asked her what she wanted for presents.  She said "Green. Red." 

"Oh, you are talking about the wrapping paper.  What do you want to be in the presents?"

She thought about that for a moment and then she said, "Horses, mmmm, horses, dolls, mmmm, horses, mmmm, horses, cars, trains, mmmm, horses, horses."

Well, that was easy.

We went downstairs and she headed for the laundry room to see Shadow like she usually does.  I got her shoes and her coat out of the closet and went around the corner to wait for her.  She followed me around the corner and I looked up to see that she was carrying a box.  I was startled.  I looked at it.  She had gotten out the box of wrapping paper.  I told her we didn't have time to do any wrapping because the bus would be here soon and I put the box away.  Then she got mad at me. 

"Presents!" she yelled.  Oh, joy! 

"Haley, we will be able to open presents on Christmas Day, today is the 3rd so we have 22 days to wait." 

"22 days."

"Yes."

Another Eye Appointment

Haley had an eye appointment yesterday.  She did really well.  She doesn't need a new prescription and her glasses are holding up well so I guess we will go another year with them.

There has been an appeal at our church for used glasses so I got out all of Haley's old glasses.  It has been very nostalgic for me.  Looking at them reminds me of all of the years that she has worn them.  I thought it would be fun to look back at pictures of her in them, the only problem is that I don't have very many pictures of her wearing her first couple of pairs.

This is the first pair of glasses she had.  She got them when she was four months old.  Notice the straps.  We had to strap them to her head.  At four months old all she did was roll around and then when she crawled they would have fallen off it they weren't strapped on.  It wasn't a perfect system however.  Also notice that there are two pairs and that they are both broken.  I am not sure if there was a design defect or if they were never tested for someone so small.  She used to take them off and chew on them.  I don't have any pictures of her in these.

This is the next pair of glasses that she had.  Notice how the white part of the glasses wrap around the ear.  Great idea, in theory.  They are also quite chewed up.

These were so cute.  She did better with them and I really liked the fact that they were metal.  They seemed almost indestructible.  The rubbery part on the earpiece is chewed up though.  I do have a couple pictures of her in these.

The next pair lasted a long time.  I loved the color on these, and that they are wire frames.  I won't ever get plastic glasses for her again.

I have lots of pictures of her in this pair.

Then there is the pair that she wears now.  She has had them since 2006.  She is pretty good to them.  She will put them on all by herself if we forget.  I think she is used to them by now.  I love the fact that they are blue, they go with her eyes.

Never a Dull Moment

As I typed that title I had the thought that I could have used it as the title of this blog, but I digress.

Haley is walking funny.  I mentioned in my post about Thanksgiving weekend that she was walking around with one shoulder held higher than the other, a' la Quasimodo.  It didn't stop when Grandma and Grandpa left, and it's freaking me out.

I watched her like a hawk yesterday before school and all evening.

I've been coming up behind her and pushing her shoulder down and then I kind of rock both her shoulders up and down.  I have been giving her mini-massages.  I asked her if her shoulder or her back hurt.  Of course she didn't answer, I don't know what I was expecting.

I spent all day yesterday, as I decorated the house, worrying about her.  I was planning to call her doctor.  I was planning to call a chiropractor.  That's what I do.  I worry.

I even tried to follow her around the house with the camera and document it. She seemed to know what I was doing and made every effort to twist away from the camera at exactly the wrong moment, the moment I pushed the button on the camera to take a picture.

When I was undressing her before bed last night I took off her shirt and noticed that she was standing so cockeyed that her bra strap was falling off of her shoulder.

I started watching her again this morning the moment she got out of bed.

She was fine. 

Her shoulders seemed level. 

I couldn't quite believe my eyes.  I watched her all through breakfast.  Then I had a thought.  What if it was her bra?  What if she was trying to keep the strap from falling off her shoulder?  She wasn't doing it when she wasn't wearing a bra, she was only wearing her pajamas.  I watched her walk up the stairs and made a mental note to put the bra on her that has a racer back, I don't think the straps would bother her in that one. 

She seemed fine after I got her dressed.  She kind of started looking like she was cocking one shoulder up when I was brushing her teeth, but I could have imagined it.  I sent her off to school. 

I have been watching her since she got home and I don't see it.  I asked her Dad if he thought her shoulders looked level to him, he said they did.  So I will keep my eyes on her.  She is going to wear the racer back bra for a couple of days though.

Man!  If it's not one thing it's another.  What's next?

It's That Time Again

I decorate the house for Christmas by myself.  There are several reasons why I do.

First of all Haley gets stressed out when we get out the Christmas decorations.  She likes them.  She actually likes them a little too much.  She wants them all opened at once and then she wants them put where they are going to go right away.  She acts like she is having fun, but after a couple of hours at it she burns out and goes in to melt down mode.  I like to avoid that.

Secondly I get stressed out when Haley "helps" me (see above.)  I tend to put things in different places every year.  I usually have rearranged the furniture during the year or bought some new things.  If you were to look at pictures of past Christmases you would see vast differences from year to year.  So Haley wanting me to put things where they go quickly doesn't work for me.  I put things in place and then I move them around, it's a process.  One that I enjoy doing by myself, without stress.

Third, I love the reaction I get when she gets home from school and sees everything up.

I always choose a day that I can devote completely to the task, because I like to take my time.  I usually have about seven hours to take down and put away the Fall decorations and then get out, put up and rearrange the Christmas decorations and then put away the empty boxes.  I work right up to the last minute and then quickly vacuum and sweep and watch for Haley's bus.

Tonight I went out to get her and as we walked toward the house she said "Ooooh. Christmas."  She had seen the swag on the front door.  Then she said "Cute." when she saw the doormat.  As she came in the house there were a series of comments for everything she saw.  "Snowman. Santa. Ooooh. Cute.  Christmas.  Candle."  This year I got a new Nativity scene and I had it set up right on top of the mantle.  She went up to it and talked about the donkey and the sheep and the wise men and the angel and so on.  She decided it was cute.  She went around the entire house looking at everything and commenting on it all. 

I think she appreciates what I do and it works so much nicer this way.  No stress.

She's Too Shy

Grandma and Grandpa were not able to come on Wednesday like they had planned.  The power was out at their house and they didn't want to leave it like that.  We knew that; they had called on their cell phone and let us know.  We didn't tell Haley.

Haley had gone to the calendar and pointed at Thanksgiving.  She had been counting the days.  When Haley counted she would point randomly at the calendar and say "one, two, three, four, five, six, seven."  She said that every time.  I would correct her and make her point at each square on the calendar as she counted, at first.  When I found out that they were delayed I didn't correct her.  I don't know if the number really means anything to her.  As far as she knew they were coming and that is all she needed to know.

They arrived on Thursday a little after noon.  We had planned to have lunch with them so we held off lunch a little later than we usually do.  We were all hungry, including Grandma and Grandpa.  Haley was much too shy to say anything to them and they both got side hugs.  She was shy all through lunch and wouldn't even make eye contact with them.

We were sitting on the couch in the family room after lunch and Haley was still so shy.  I said "I hope you are staying for a couple of days so that she will get used to you."

She never really got used to them.  At least it didn't seem like it.  In fact, she was so shy that she walked the long way around the house to come in to the kitchen and if they were in the kitchen she walked in kind of a hunchbacked way.  Her left shoulder was about two inches higher than her right.  She was really starting to concern me.

On Friday we asked Grandma and Grandpa if they would watch Haley so that the three of us could go to a movie.  While we were gone Grandpa had taken Haley in their car to the tractor store.  Unfortunately the tractor store was closed so they ended up getting gas and coming back to the house.  That was enough for Haley.  When we got home she was so excited to tell us that she went in Grandpa's car to the tractor store.  She was still talking about it on Monday.

On Sunday she and her Dad took them train watching and on Sunday night Haley sat between Grandpa and Grandma on the couch while we watched a movie.  She was still acting really shy, but she was definitely having fun. 

This morning when it was time to go to school she gave them both hugs.  I told her that they were going home.  I don't think she was listening.

When she got off the bus she noticed that the driveway was empty.  She walked in to the house very slowly.  She looked around the living room.  She was very quiet while I helped her off with her coat and her shoes.  I asked her about school and I got the standard "Fun."  A few minutes later she started crying.

She said "Car gone."  I said, "Yes Grandma and Grandpa went home."

Then she got mad.  I gathered that she was mad at me, but I think she just didn't know how to react. She cried and yelled for a little over an hour.  I toyed with the idea of recording her fit for them because while they were here they could hardly hear her. 

They would have heard her tonight. 

I wasn't surprised.  I knew it would happen.  I kind of hoped it wouldn't, but I would have been surprised if it didn't.

I Am Thankful

Today is the day that Americans set aside to remember their many blessings.  We honor this day and share it with family.  I am thankful everyday, but today I will list a few reasons why.

I am thankful that Haley is healthy.  Over the years Haley has only been sick a handful of times.  She doesn't have any major medical issues.  I was scared when she was born.  She didn't gain weight in her first week of life and we had to feed her with a syringe every two hours.  At that time I thought we were in for a lifetime of medical issues.  She has issues, but she is healthy and I am thankful.

I am thankful that Haley can talk.  There was a time when we didn't think she would ever be able to.  She could say words but they were few and far between.  The words she used were mainly nouns.  I would pray that some day I would be able to have a conversation with her, I just wanted to know what she was thinking. It has happened gradually and she is by no means speaking like other thirteen year olds, but she can talk to us and we do generally know what she means.  Take the conversation that I posted yesterday.  She can be repetitive and annoying at times, but I know what she is thinking and I know what she wants and I am thankful.

I am thankful that Haley and her sister have a great relationship.  Can you imagine what it must be like to be the Big Sis to a child like Haley.  I know it's not easy.  Haley's sister has grown up to be a very compassionate and thoughtful young lady.  I remember the comments that my friends would make watching them together.  She always tries to help Haley when she needs help, she teaches her things, she teases her like a big sister does, they have inside jokes between them, they wrestle, they share music, they crack each other up and they love each other.  They occasionally fight like sisters do, not very often, but when it happens it makes me smile because it means she thinks of Haley as her sister and not a breakable object.  Haley has a wonderful sister and I am thankful.

I am thankful Haley has good taste.  OK, I had a hard time with a single sentence on that one, but this is what I mean.  Haley likes movies and music that I like.  She doesn't have any patience with shows that I also find to be annoying.  For example:  We never had to watch Barney.  Haley didn't like those stupid animated dinosaur movies that they made incessantly.  Haley chooses to watch movies that I like.  She watches certain movies over and over and surprisingly I don't get tired of them.  She listens to music on her iPod and on YouTube that doesn't drive me crazy.  When I listen to my music she sings along, she doesn't whine for me to change it and I am thankful.

I am thankful for everyone who reads this blog.  A number of you that are reading this know Haley and love her and want to know more about her and I am very thankful for you.  Some of you know me and are very supportive of me being Haley's mom and I am very thankful for you.  There are some of you that read this blog because you have a child like Haley and I hope it helps to read about Haley's trials and triumphs.  I didn't know anyone else that was going through the same things I was when Haley was little, I would have loved to find people that would write about their experiences.  I hope that I can be of help to you, but barring that I hope I can at least give you something to smile about and if I do I am thankful.

Several people have asked me if they can share this blog with people that they know.  Please feel free to share it with anyone that you think would benefit from my insight.

I hope the things that I write help you to know that although it can sometimes be hard or frustrating that raising a special needs child can be fun!

That Sam I Am

Would you like them in a house?  Would you like them with a mouse?

That Sam I Am he was quite a salesman.  He didn't take "No" for an answer.  He was persitant.  He was annoying.

He had nothing on my daughter.

"Case."

"We are not going to pack a suitcase, we are not going anywhere."

"Grandpa's house."

"We are not going to Grandpa's House.  Grandma and Grandpa are coming to our house."

"Grandpa hug."

"Yes. You can give Grandpa a hug when he gets here."

"Yay!  Knock Knock. Come in. Here."

"Yes.  Grandpa is coming and we will let him in when he comes."

"Coming."

"Yes.  He is coming."

"Yay! Grandpa hug."

"Yes.  You can hug Grandpa when he gets here."

"Case."

Seriously, this is just a small sampling of what goes on around here. And it was heavily edited.

One Track Mind

Five more days to go and (maybe) this will stop.

Haley does not want to listen to reason.  She starts talking about going to Grandma and Grandpa's as soon as she wakes up, before her feet hit the floor.  She is constantly trying to get me to get her suitcase out.  She wants to pack her DVDs that she has meticulously stacked.  She wants me to get the "case" out for her toothbrush and the shampoo and conditioner that are sitting on the bathroom counter.

Yesterday I tried to convince her that we were looking forward to a visit from Grandma and Grandpa.  That they were coming to our house (not the other way around).  I got this idea in my head that if I showed her the route they were going to take it might help.  I have no idea why I thought that was a good idea.  I think I am losing it.

I typed their address and our address into Google maps.  I showed her the the blue line that indicated the most likely route that they would take.  I pointed to our house on the map and to their house on the map.   I clicked on our house and showed her a picture of our house.  She thought that was cool, but she wanted to see Grandma and Grandpa's house. I tried to click on their house to see if there was a photo.  There wasn't.

I got her ready for school and sent her out the door.  I enjoy the reprieve.  I get about seven hours a day of not having to listen to her talk about going to Grandma and Grandpa's and explaining to her that we are not.

When she got home it started up again.  I finally got to the point where I wouldn't answer her.

That didn't really help.

She stood at the top of the stairs and ranted.  After about five minutes I thought it would have been smart if I had been recording it, you know, for posterity.  She went on and on about going to Grandpa's and crying and then talking about crying.  Her teachers would have been amazed.  I am sure they have no idea how loud she can actually be when she wants to be heard.  Not everything she said was recognizable.  It was just a lot of grunting and moaning with the occasional understandable word. "Uh, uh, uh, Grandpa's house, uh, uh, Heather, uh, uh, uh, cry..."

Pretty soon her Dad came home.  He came in the room where I was and talked to me a few minutes and then went upstairs.  By then she had quieted down some.  All of a sudden I hear "How would she have gotten a picture of my parents house on the computer?"  I said, "I typed their address in to Google maps this morning?"

My husband's parents usually call on Thursday nights just before Haley's bedtime.  She likes to listen to them talking on speakerphone.  She rarely talks to them, but she really enjoys hearing their voices.  I went up to get her ready for bed and saw that there was an aerial view of their house on the computer screen.  I said "How did you get that picture?"  My husband said "That is the picture that was on the screen this afternoon."  I told him that I hadn't seen it before.  We just looked at each other.  He showed me a small brown mark on the screen.  "We think that is Heather."

How did she get that aerial shot to come up?  I will never know, but I imagine it will be on our computer for some time to come.

She Got My Attention

I love it when Haley makes an effort to get my attention.  I wish she would just say "Mom," but she doesn't.  Well, hardly ever.  There was that one time.

Last night after I had put her in bed she came down for a snack.  She went through the front room and around to the kitchen in what I would consider the "back way" or the "long way."  I guess this is her being sneaky, thinking that she won't get caught and sent back upstairs.  It cracks me up.  She has always gone that way - after I have put her in bed.

She had gotten her snack and had eaten it and was ready to go back to bed.  She won't just go back to bed by herself.  She always wants me to put her back in bed.  I was watching a show on the television; I was laying on the couch with a blanket covering me and I was engrossed in the show.

Pretty soon Haley is standing in front of me, in my direct line of sight of the television and leaning over toward me.  She whispered "help" and then stood up.  I told her she probably would have gotten a response from me if she had just said Mom, but I know that is a lot to ask.

This morning we were eating breakfast and I was reading the paper.  Haley had let the cat in earlier and he was sitting on the couch.  I was engrossed in the paper and I didn't hear her get up from the table.  All of a sudden I hear "Shadow upstairs."  I looked up and Haley was standing at the bottom of the stairs looking at me.  I jumped up and said "Thank you" and ran up the stairs to see what kind of mischief my cat was getting into.

See, she can get my attention when she wants to.  I think she has learned what will get my attention the quickest, too.

I Don't Understand Her

Haley has been doing some odd things lately.  Well, I think they're odd.

She has been opening windows.  She can open the windows in our bedroom that look out onto the culdesac, the front room windows, the window in Shadow's room (the laundry room) and the window in the bathroom that she shares with her sister.

I keep explaining to her that it is cold outside and that we don't want the windows open.  I have told her that it makes our heater come on too much and that Shadow will get cold.  It is not sinking in.

My other daughter walked in to the laundry room the other day and said that she had left the window open in there.  I have no idea when she opened it.  It was really cold in there.

It's driving me crazy.

When she is taking a bath and the water is filling the tub if I look away she turns the water all the way to cold.  I didn't realize she was doing this for awhile.  I always ask her to turn the water off when the tub is full enough so I haven't actually turned it off for awhile.  I thought the water seemed cool and I also thought that maybe our water heater wasn't keeping up.  I usually give her a bath in the evening about the same time that we are running the dishwasher.

I saw her turn it down the other day.  Well actually she was sitting there shivering and I looked over at the tap and it was turned all the way to the right.  I cannot figure out why she would do that.  I turned the water on warm to rinse her hair while I was washing it and she said "Better."  I told her not to turn the water down anymore. 

I don't know if that is sinking in either.

It seems like these are things that she has learned to do so she does them.  I don't know.  As I type this I realize they are similar in that it would seem she is too warm, but I really don't think that is it.

The other thing that is not sinking in is that we are not going to Grandma and Grandpa's.  She mentions it everyday.  Some days are worse than others.  Yesterday the girls didn't have school because of Veterans Day.  That completely messed her up.  When she got home on Wednesday she said "School Friday."  I said "Yes, you will have school on Friday, but not tomorrow."

Something about being home made her think we were going to start packing.  She has had her toys packed up for awhile now, but she started stacking her videos and wanted me to get the "case" out - the bag that we pack videos in.  She just keeps pointing at the stack and saying "Case." 

She got to talk to Grandma and Grandpa on the phone last night.  I don't know what was said, but she did come downstairs and say "Gobble. Gobble. Gobble. Grandma.  Pie."  So I assume they talked about Thanksgiving.  This morning after I got her ready for school she went running in to our bedroom.  I followed her to see what was going on and she pointed at her new suitcases and said "Case."  I tried once again to explain that we are not going anywhere.  That conversation went on all morning.

A little while later she was sitting on the couch watching a show with the cat on her lap and talking about going to Grandma and Grandpa's.  She tries to get me to agree with her.  It is a trap.  She will say something with an inflection in her voice and if you say something like "Uh, huh."  Bam, she's got you. 

I didn't do that.  I told her that she was going to school today and she said "Friday."  I said "Yes, today is Friday and you are going to school today.  Tomorrow is Saturday and you will stay home."   She started crying. 

Huge tears rolled out of her eyes and down her cheeks.  I got her a tissue and dried her eyes and blew her nose and left her sitting there.  By the time the bus arrived she had composed herself.  I don't know how we are going to make it to Thanksgiving.

New Clothes

I asked Haley's Big Sis to go through her closet and find some clothes that she doesn't wear anymore because ARC is coming to pick up the clothes I have been collecting.  I thought we might as well make it a paying trip for them. 

I am going to pause now to let you know that we always take our used clothes to the ARC.  They support programs for kids like Haley.  The items are sold at the Value Village and the money goes to a worthy cause.

Anyway.  Haley came in to her sister's room and saw the pile of clothes on the floor.  She heard her sister and I talking about the clothes and she just stood there looking at us. 

I know my daughter.  She didn't have to say anything.  She wanted those clothes.

I picked up the pile of clothes and she reached out for them.  I handed them to her and that was that.  She was able to put one of the shirts on by herself and she wore it the rest of the night.

This morning after breakfast I told her it was time to get dressed.  I didn't have to tell her twice, she stood right up and headed up the stairs.  I started to follow her and I said "That was quick, do you have an outfit in mind?" and she said "Guitars. Gray."  I knew exactly what she was talking about.  There was a gray shirt with guitars on it in that pile from her sister's room.

We got her dressed and she was really excited. 

I hope she can pay attention in school today.  Her Dad and I met with her teacher on Monday night and one of the things we talked about was how much she likes to show off her clothes and discuss what she is wearing.  Apparently it is difficult to get her to concentrate on her schoolwork because she wants to talk about her clothes.

Here I was thinking that she and her sister had such different tastes.  I guess I was wrong about that.

Hand Me Down

I have been going through my closet lately.  Actually the truth is this: we got a new TV. 

The new TV needed a new TV stand.  I didn't want to get rid of the piece of beautiful oak furniture that the old TV was on so after many days of thinking about it we moved it upstairs.  We moved the dresser that was upstairs downstairs and I had to find new homes for all of the clothes that were in the dresser.  I made a big pile of clothes that I don't wear anymore, for various reasons. 

As I was putting those clothes in to sacks to donate I was folding a pair of pants and thought that they just might fit Haley.  After all, she wore one of my dresses for Halloween and it didn't need to be hemmed, maybe my pants wouldn't need to be hemmed either.

Haley is getting tall.  She passed up both of her Grandmas at the beginning of the year and we have noticed several times recently that she is taller than her Big Sis.  Her Big Sis thinks it is her curly hair that makes the difference, but I don't think so.  I wouldn't be surprised if she passes me up soon.

So yesterday morning when I was getting her dressed I tried my pants on her.  They fit.  They were just a little baggy, but the elastic is really good.  That is actually why I was willing to give them up.  The elastic was a problem for me, but not for her.  They weren't at all too long.  In fact I am sure she will grow out of them lengthwise long before they will "fit" her.

So now I think that I will go through those sacks and see if there are some other things that I could try on her.

Over the years Haley has worn some of her sister's hand-me-downs but there came a time not to long ago that they were basically the same size.  Then there came a time when her Big Sis's pants were too short and too big around for her at the same time.  She still hands down the occasional shirt, but they have very different styles.

So now she will get hand-me-downs from me.  Weird. 

Haley's Big Sis sometimes borrows my tops and jackets and Haley likes to go through my closet and look at my clothes.  Soon she will start wanting to wear them. 

I guess this is what comes with having teenagers.

Past Halloweens

I mentioned the other day that Haley doesn't really get in to the whole costume thing.  She loves the candy, don't get me wrong, but she could care less about dressing up.  She will do it, but it's not her favorite activity.

I wanted to go back and look at the costumes she has worn in the past, but I have a problem.  Apparently I have not done a very good job of taking pictures on Halloween.  There are several reasons for this. 

One:  She doesn't like the costume thing so she is usually not the best subject.
Two:  She really doesn't like to pose for pictures anyway.
Three:  She just wants to get out there and get her candy. 
Four:  I'm a flake.

So here are the only pictures I have of Haley in Halloween costumes.

This was Haley's favorite costume.  Ever.  She wore this costume for about three or four Halloweens.  She finally grew out of it and I had to retire it.  She loved this costume because the cute cow on the front would "Moo" if you pushed in his nose.  She couldn't do it, we had to do it for her.  It was not easy to do because you had to press really hard to make it work and we didn't want to press her tummy that hard, so we had to kind of hold the nose away from her tummy and press it.  She thought it was hilarious.  For years the only thing she equated with Halloween was the cow costume.  Back then I don't think she even cared about the candy.

This costume was a no brainer, I'll admit, but it was appropriate.  It was also easy to put in her backpack, this was when she could dress up for Halloween at school.  I know, amazing, right?

I was quite proud of this costume.  It was a combination of two costumes that my husband and I had worn on a cruise to the Caribbean.  I thought she looked great, but she was in a really bad mood.  She did not want me to take her picture and she would not stand up.  She threw herself on the floor and screamed and cried.  Normally I would have given up, but I wanted a picture of her in this costume.  So I have about a dozen pictures of her throwing a fit.  For posterity.

I am not even kidding.

This again was a bit of a cop out on my part, but cute, right?  Maybe it is just because she is so cute, I don't know.  She was in a great mood for this shot too, which helps.  When she actually went out Trick-or-Treating she wore a coat and had a cape over it with spider webs on it.  The wings, hat and cape were from three different costumes her Big Sis had worn over the years.  This was the first year that her Big Sis took her out and I stayed home.  It was very hard for me.  Big Sis said that Haley would not keep the hat on her head, but she said she had fun.

This was also the first time we played with make-up.



Queen Haley

Earlier this year when Haley's Big Sis and her girlfriends got ready for prom Haley seemed jealous.  It seemed like she wanted to join in.  We decided that for Halloween she needed to get glammed up.  We also decided that it need to involve glitter somehow.  We didn't really have a plan though.

Haley loves to go Trick-or-Treating.  She loves to get the candy.  I think in general she puts up with the costume.  Some years more than others.  Last year she wasn't at all thrilled with the costume part.

She doesn't get into it, she doesn't have ideas, she doesn't even talk about it.  All she talks about is "trick-or-treat" and candy.

I really haven't thought about it much since prom, I just knew that it would involve glitter.  Saturday night when I went to bed I started to stress because I had no idea what we were going to dress her up as.  I decided that I would try to go to sleep and think about it tomorrow...

So on Sunday at about 3:00 PM I went up to my closet to go through old costumes. I moved a few dresses to get back to the costumes and I saw it.  The dress that Haley would wear.  It was a dress that I had worn to a few events in the past, it wasn't an expensive dress, it had seen better days.

I showed it to Haley and told her that she could be a princess.  I showed her the tiara that she could wear.  She seemed to like it.

I went downstairs to do something and then I came back upstairs and she was wearing it.  I thought "Why fight it?"  I decided to go ahead and put on her makeup.

Once she was dressed and made up we decided that she was not a princess, she was a Queen.  She decided later that she was the Queen from Snow White.  I am not sure why.  All I know is that she was beautiful.



She went out with her Big Sis and her friends.  They were gone almost an hour.  Then they came back and left her with me and headed out again.  Then she got down to business and dumped her haul.  We categorized the candy and counted it and did her best to get rid of some of it.

That is the whole point, right?