I keeee you

Haley really wants to go to her Grandma and Grandpa's.

She really wants me to (at least) put it on the calendar. She points at the calendar. She points at the only Saturday on the calendar that is open. It is the December calendar, so it is the 17th.

I have explained to her that the day she is pointing at was two weeks ago.

Her Dad tells her what happened on that day. I really don't think that helps.

She just wants me to write G and G on the calendar. I have told her that I don't know when we are going so I can't write anything.

All of these answers make her mad.

I refuse to lie to her though. I can't tell her something is going to happen if it is not. I can't say that we are not going, we might.

So the other day after this had been going on for a while, Haley's mood went down hill. She got madder and madder. She got to the point that she was screaming. A high pitched scream. I asked her to stop.

She screamed "I keeee you."

I don't know what she was actually saying.

That is what it sounded like to me. So what it kind of sounded like was "I kill you." It might not have been that, but I don't know.

My husband thought it was funny. He thought it sounded like Jeff Dunham's Achmed the Dead Terrorist. She has never heard that, that I know of.

Either way, I don't think that is what she said.

I hope that is not what she said.

Giving is as good...

On Christmas morning Haley was excited to dump out her stocking and see what she got. She was happy to play with the three baby farm animals that were in her stocking through breakfast. Then her sister came downstairs and suggested that we take a look at the tree. There is a curtain that closes off the entry from the living room and Haley's Grandparents had left it closed for privacy. We all gathered at the curtain and opened it.
 
I love the reaction that we get when Haley sees all of the presents under the tree. I know that she knows that they are not all for her, but it is still exciting for her to see so many.

She was pretty patient while we opened presents this year. She really didn't want to give anyone their presents though. She would pick up a present and look at the tag. If she recognized her name that was good. If she didn't she would hand it to me or her sister with a questioning look on her face. We would tell her who it was for and ask her to hand it to them and she would just grunt.

After having screwed up the present I was most excited about I did find a few good presents to give her.

I was kind of excited about giving her one of them.

When my Mom was here we went to Craft Warehouse.  I was telling her how I didn't really know what to get Haley.  I wanted to get her something that she would really be excited about.  Just then my Mom looked down and saw just the thing.  It was a print of the Daylight in the snow.  It was perfect.  I found a black frame for it.  I thought it would be a great addition to her room.  Her room is mostly decorated in horses, but I think we are about to transition it to trains.

I saved the framed print for her next to the last present.

She had gotten a Cars 2 book, a coloring book, a John Deere tractor and truck from G and G and some money from both sets of Grandparents.  My Mom had found a card with the Daylight on it that Haley really liked too. Then I handed her the print.

She did not disappoint.

She ripped the paper off and squealed.

It is so fun to give a gift that someone really likes.  There was no mistaking that she loved it.

It now hangs in a place of honor in her room.

Anticipation...

Haley had been in constant anticipation mode for a week. 

Not for what you might expect. 

She was anticipating going to Grandma and Grandpa's house.

It did not seem to matter how many times I told her that we were not going to Grandma and Grandpa's house.  She was convinced that we were.  I finally broke down and told her that they were actually coming here.  I put it on the calendar and we talked about it.  I showed her that G and G would be here on Christmas Eve and the next day we would open presents, thinking that the prospect of presents would distract her.

I thought she understood. 

Sometimes I think she did understand and then other times she still thought that we were going to their house and that we needed to pack.  She made piles of DVD cases.  She put her pillow pets by the back door.  She packed three purses full of toys. 

I explained it to her again.  She seemed to understand.  Again.  Then about an hour later she wanted her suitcase out of the closet. 

I began to feel like I was in a remake of the movie Ground Hog Day only nothing that I did made any difference at all.  It was just the same conversations over and over.

Finally on Christmas Eve, much to my relief, Grandma and Grandpa did arrive.

Haley gave them both shy sheepish hugs and promptly went upstairs to her room.  Soon she came down with various toys, magazines and pictures that they hadn't seen before.  One at a time, of course. That went on most of the day.

Haley's voice left her, like it always does, but she did sit next to Grandpa on the couch kind of voluntarily. 

We were all watching football and Haley came in to the room.  She pointed at the opposite end of the couch from where Grandpa was sitting.  I told her she could sit there.  She did.  Then her Dad told her that she could sit closer to Grandpa if she wanted to and she scooted a foot closer.  Then Grandpa patted the couch right next to him and she scooted all the way.  She stayed there until it was time for her to go to bed.

Haley gave them both hugs every night before she went to bed.  I also reminded her several times that she could just give them hugs whenever she wanted to.  She did!  We went for a walk down by the river on Monday and Haley really enjoyed walking with them.  She kept up with them too.

I don't know if it is obvious to her Grandparents that she loves having them here.  It is obvious to me.  She was quiet, but she was thrilled.  

Tuesday morning they started packing their things.  When their car was loaded we gave them hugs again and thanked them for coming.  Haley left the room.  Then she came back in.  I told her she could give them another hug and she did.  Then we watched them drive away, waving the whole time. 

Then her voice came back. 

She started going over all of the things we did while they were here.  She talked about them driving away.  We talked about how they had probably put on their seat belts before they drove away.  A little later she started talking about a bridge.  She knows they have to drive over a bridge to get to their house.

Today she is still talking about the visit.  She is also talking about going to their house. 

She wants to pack.

Here we go again!

Yeah, fun day!

The Holiday Express is a train ride behind one of the two steam engines that are housed in Portland. The first weekend this year it was pulled by the SP&S 700 and the second weekend it was pulled by the SP 4449.

Haley's Dad took her to watch the 700 on the first weekend. They had a great time together. They spent the rest of the day looking at the pictures that he had taken of it. Haley loves talking about the steam and the smoke. She still says that it smells good.

I found out later in the day that Haley and her Dad actually took a spill on a slippery part of the trail. She hadn't told me about that. Her Dad said that she was surprised and it looked as if she was about to cry when he laughed it off and made some jokes. Then she laughed about it too and they went on.

She was really excited about seeing the 700 running and kept talking about taking a train ride. Her Dad had to admit that we had tickets for the following weekend.  She even made him show them to her.  That was all she would talk about all week long. "Tickets. Ride. One, two, three, four,"  because we had tickets for each on of us.  Once she saw them she was fine. She was excited, but she never got upset like she has in the past when something fun doesn't happen fast enough.

So the next Saturday we got in the Yukon and headed out.  We planned to go early this year so that Haley could get her shopping done before the ride.  Her Big Sis needed to be somewhere right after the ride.  Haley enjoyed walking around looking at all of the merchandise they had on display.  She pointed at things and talked about them, but she wasn't picking things up or acting like she wanted any one thing.  I needed to speed it along so I asked her if she wanted to buy anything.  She was off like a shot picking up videos, calendars and t-shirts.  I had to push past a few people just to keep up with her.  I know she understands money and buying things now, but she was in such an excited state I was afraid that she would just fill her arms and head out.

She chose a calender of the SP 4449, a video (the second part of a series we already started buying her) and a shirt with the SP&S 700 on it.  I think she would have taken one of everything, but I had to limit her a little bit.  She also wanted a hot chocolate, but her Big Sis thought that maybe what she really wanted was the free cookie that went with it.

We got in line and listened to the volunteer explain about the engine and the trip.  Then we got to get on the train.  We chose a seat with a table and sat down and Haley opened up her bag of goodies to check everything out.  She had also picked up a brochure about Amtrak that she (surprisingly) didn't already have, considering how much time we had been spending at the Amtrak station lately.  There were brochures on the table when we sat down and she was quick to grab them and stuff them into her bag as well.

As we rode down the track we talked about what we saw out the window.  Her Dad pointed out the places that they had stopped along the trail to take pictures the weekend before.  He even pointed out where they both fell down.  Haley pointed out the lights and the ornaments that decorated the inside of the car.  Soon we heard the jingle of bells and we knew what to expect.  Santa and his elves came in to our car and gave everyone candy canes.  He stopped to take pictures with the children.  I asked him if I could take a picture of him with Haley.  I don't think that he realized she was a kid - she is getting so big these days.

We had a great time on the trip this year.  Haley still talks about it.  She says "Yeah, fun day!"

Random Ramblings...

...or...

If I don't post something on here you all will think I died...

I probably don't need to tell you that this time of year can get a little hectic.  So anyway...

My Mom came to visit for a day.  It should have been longer but she was on her way through via Amtrak and her train was so late getting in we basically lost a day.  She was only scheduled to be here for two days and then she left again to visit my brother down south for Thanksgiving.  I did put my foot down (and pouted quite a bit) when I found out that she would only be here a couple of days on her way back north and east, so her trip was extended and she was with us about four days after the holiday.

So Mom was here and that was fun.

Then for Thanksgiving we went to my husband's parents.  We did all of the things that Haley would expect.  She got to go to the Tree Farm with Grandpa and she rode the tractor.  She saw Heather.  We had wonderful food and generally had a nice visit.

Then Mom and Don came back and spent some time with us.  We all really love having my Mom around.  There is always lots of laughter.  Haley didn't seem shy at all.  She gave everyone big hugs every night before she went to bed.  In fact the hugs got bigger every time.

I have been busy getting Christmas presents and trying to get them wrapped while the girls are in school.  I am almost done.  They will have the next two weeks off and I think I am ready.  The calendar is looking less full toward the end of the month and I am really looking forward to just hanging out with my family.

Haley is excited for Christmas.  She brings home art from school each day.  Today she brought home a gift from her One-on-One.  It is a toy train that holds candy.  When you push down the smoke stack it makes a lot of train related noises.  The sounds go on for quite a while.  That gift may not last long around here.  She hasn't even discovered that there is candy in it yet.

Oh, Haley got to see the SP&S 700 and the SP 4449 too, but that is a subject for another day.

Comments

I enjoy reading blogs.  I read blogs by mothers of children with disabilities, blogs by single fathers, blogs by women who write for a living and blogs by women who have made their blogs their livelyhood.

I have noticed something.

People comment on blogs.  Sometimes I feel compelled to comment as well.  It is the way that the blogosphere communicates.

I don't get many comments on this blog.  I don't know why that is.  Maybe I haven't made it easy enough.  I am using blogger's commenting system.  There are others.

Maybe what I say doesn't prompt people to comment.

I actually get quite a few comments through facebook and I am thrilled when someone shares what I have written on facebook.  That is quite a compliment.

I also have several friends that read this blog and tell me in person how much they enjoy it, how much they have learned about Haley and how much they appreciate my sharing her adventures.

But in general, dear readers, you don't comment.

So when I get one it makes my day. 

For the most part the comments I have recieved have been positive.  I haven't gotten any spam that I am aware of, which is great.  I do monitor my comments and I don't publish some of them.  If you commented on this blog and I didn't publish it, it was probably because you mentioned my real name or the name of Haley's sister.  I try to keep personal things off of this blog to protect Haley.  I still appreciated the comment though, so thank you.

I just wanted to share with you how much the comments that you leave mean to me.  I truly do enjoy reading them and I try to respond. 

Thank you.

Green and White

Haley is excited about the Christmas decorations.  She knows Christmas is coming.  She also knows that means presents.

She walked in to the living room Monday night and pointed to the Countdown Santa Claus that I have sitting on a high shelf and said "Presents!"

I said "That says there are 28 days until Christmas."

"Presents!"

"28 days until presents."

"Yay! Woo! Hoo!"

"Are you excited about getting presents?"

"Yeah."

"What would you like for a present?"

"Green."

Hmmmm...

"You want one of your presents to be green?"

"Yeah."

"OK, I can do that.  One of your presents will be green.  What kind of present do you want?"

"White."

"OK, so you want to have a green present and a white present."

"Yeah."

Fast forward to this morning...

She comes down the stairs and sits on the couch and points up to the Countdown Santa and says "Green and White."

Hmmmm...

The Finishing Touch

After the girls left the house on Monday I got busy decorating the house for Christmas.  I decorate by myself.  I had two fewer hours this year than I have had in the past. 

I almost got done.

The problem is that I never decorate the house exactly the same way.

I take pictures of the decorations every year.  I have learned that although I enjoy being creative, when it comes to decorating sometimes I get frustrated and I want to get done quickly.  I took a first run at it and everything looked pretty good, but I wasn't happy with a few things.  So I looked at the pictures from last year. 

I had failed to take pictures of some areas, but luckily Haley had taken a few *cough* dozen - so I could piece it together.

You might think that I could just put things up the same way every year, but I can't.  The decorator in me wants to play.  I had to keep telling her that she didn't have time.  I am racing against the clock.  I usually like to decorate the whole house and have all of the boxes put away before Haley gets home.

I didn't make it.

I didn't even get the tree up.

Haley immediately knew something was up when the bus pulled in front of the house.  My husband had put the giant wreath above the garage door.  So she came running.  She saw the front door and said "Oooooooo!  Christmas!"

She proceeded to walk around the house looking at everything, pointing at everything and saying "Ooooo..."

I asked her if something was missing.  She didn't bite. 

"Do you see a tree?"

She walked around the house again.

"Do you think I should put up a Christmas Tree?"

"Yeah." she said.

I got the tree out and put it together.  She got out the star.  I explained to her that I needed to put the lights on it.  As I went through the lights to see which ones would light up this year she grabbed a set and left the room. 

Pretty soon I could hear her Dad from upstairs saying "Take those back down to your Mom."

She brought them back and then stood and watched me for a few minutes.  Then she went in the family room and put one of the Christmas videos in that I had stacked on the floor next to the TV.  I thought about putting them in the cupboard for her to find, but I figured we were in for a marathon anyway I might as well make it easy for her.

After I got the lights and the garland on the tree I had to make dinner.  I also know from experience that I cannot decorate the tree by myself.  Haley's Big Sis wants to do it, so I left it for her.

After dinner I sat down on the couch.  Haley brought me the star for the tree.  Her Big Sis was playing a video game.  She told Haley we could decorate the tree when she finished the level she was on. 

Haley left the room.

She had occupied herself by playing on the computer.

We came in to the room and Big Sis plugged in the lights.  I put on some Christmas music and we started decorating the tree. 

Haley had the star. 

We showed her how to hang the ornaments.  She put one the tree and and that was enough.  She wanted the star on.  I told her she had to wait.  The star perches on the top of the tree in a very precarious way.  It is probably the heaviest thing we put on the tree.  If we were to bump the tree while we were decorating it the star would fall off.  I knew that Haley didn't understand that. 

She didn't like to wait, but I know that if the star fell off the tree she would like that even less.

Finally we finished.

Finally the star went on.

I am still not done, but it is good enough for the first day.  I will work on the house some more when the girls are in school.

Then I will play.

I Blew It

What I don't understand is why after almost two months of school I cannot get used to the fact that Haley gets home at 2:00pm.

Remember a while back when I was so proud of myself for coming up with a great Christmas Present for Haley? 

Well, it arrived. 

I opened it, checked it out and set it down on my desk.

I realized that I needed to go upstairs for something.  As I got to the top of the stairs and saw the time on the alarm clock in Haley's Big Sis's room and realized that the bus would be here at any moment.  I ran back down the stairs and looked out of the window.

Sure enough, the bus was here.

After I got Haley squared away I headed back upstairs to finish what I was doing. 

Pretty soon Haley came up behind me all excited.  I turned to see what she was talking about and...

"SHIT!" I yelled.

Haley's eyes got big.  Her Dad yelled "What's wrong?"

I quickly backpedaled.  "What do you have there, Haley?"

"Daylight."

I told her it was supposed to be her Christmas present. I asked her if she was surprised.

She obviously loved it.

I said "Go show your Dad."

The rest of the day she walked around talking about it.   She kept saying "Daylight.  Cute.  I like it."

Her Dad just keeps laughing at me.

I deserve it.

Another IEP

Last week my husband and I attended a meeting with Haley's teacher "B" to discuss her Individualized Education Program (IEP) at school. 

Her teacher instructed us to call him B, because it is easier for his students to say.

The IEP meeting is a time when we can help the teacher figure out how and what to teach her.  Each child gets their own IEP and so the teacher has very specific things to focus on for all of the kids in his class.  Haley's teacher is young and enthusiastic.  He has high hopes for Haley, as do we.

We discussed some of the things that were previously on her IEP and how she has achieved them.  Some we can remove because they no longer apply, like those geared more to her Middle School experience. 

She is in High School now, so her learning is changing.

One of the things that will be changing is that she will be in an "apartment program."  The Special Education department has set up one of their classrooms to be an apartment.  They have a kitchen, a dining room, a living room and a bed.  Haley will be "in the apartment" for a week.  She will be paired with another student in the apartment and she will have her one-on-one with her.  While there she and her partner will plan all of the meals, do all of the shopping and cooking and cleaning up.  She will even get to go to a "job."

I am excited about this program.  Not only will she be able to learn how to take care of herself, but I can watch!  They have an area that I can come in to without Haley being able to see me.  I will be able to observe her in action.  I am planning on going in after she has had a chance to get familiar with the apartment.

While we were talking about what she will learn I realized that I haven't been teaching her to do many of the things that she will be learning.  I tend to take care of her.  I don't expect her to be self-sufficient. 

I will be learning as well.

Her teacher asked us what kinds of things we would like him to teach her.  We talked about recognizing signs around the school (like the exit signs) and what to do if she sees the sign.  We talked about learning who to go to for help.  The teacher pointed out that she is never alone, which is a good thing, but we still want her to know the other teachers, the secretaries, the principal and security guards.

The speech therapist was there too.  It is always a bit disheartening to talk to a new speech therapist.  This one at least knows that she can speak, but because she is still in her shy mode he doesn't know how well she can speak.  We told him some of the things that she says at home and his eyes got big.  He hasn't heard any of it. 

He has been working with her to just say "Yes" and "No."  We told him that she says "yeah" instead of "yes" and that we have only heard her say "no" once.  We told him the story.

He wants to determine what she knows by showing her cards with pictures on them of household items.  He showed us the cards.  We agreed that she probably didn't know the things on the cards.  It was a bit embarrassing for us.  Haley knows a lot of things.  She can recognize every animal, all kinds of vehicles, more trains than most human beings and everything Disney related, but she wasn't recognizing toothbrush, comb, hair brush, and soap. 

We don't talk about the day to day things in our house I guess.  I don't know why.  It was very weird to realize that. 

Lately she has been curious about what I am doing when I make dinner.  I have been explaining my processes and what I am using.  I guess I need to do a lot more of that.

The IEP meeting is for the teacher to determine what Haley needs to learn.

Apparently it is also for her parents to learn the same thing.

Haley's Photography

So if you have been around here for a while you know that when Haley gets a hold of my camera she doesn't just take one or two pictures. 

She takes fifty or sixty or more.

The other day when she was taking pictures of her Big Sis carving her Halloween pumpkin she took a lot of other pictures as well.  I love going through all of Haley's pictures.  I actually think she has a pretty good eye.

I have assembled here some of my favorites from that day. 

There was good light. 

I call this series:

"Surfaces and Shadow"

Halloween Holiday Happenings

Haley's Big Sis decided that she and her BFF and Haley would all be Mermaids for Halloween this year.  She decided that in plenty of time for us to figure out how we were going to pull it off.

As it turned out I had most of what I needed to make the costumes here at home. I made one trip to the fabric store and I started sewing.

I used to sew all of the time, before I had kids.

I had such dreams of sewing for my children, especially because they were girls. I dreamt of the frilly dresses I would make. The matching outfits.

I actually have fabric, patterns and notions for several outfits that never happened.

I learned early on that me sewing and Haley don't mix, but I had kind of forgotten what that meant.

I had everything set up and was working away when Haley's bus arrived.  I brought her in, helped her get settled and gave her snack.  Next thing I know she was watching me.  I tried to explain what I was doing.  Soon the mood in the room turned.  She didn't really say anything and it is hard to put in to words what was happening.  It was just extremely hard to continue.  Her sister tried to distract her several times, but she made herself very disruptive.  Needless to say I didn't get finished.

I put everything away and tried it again the next day.

Haley's Big Sis came home from school that day with a plan.  She changed her clothes when she got home and went right out and got her pumpkin and carried it to the back patio.  She got knives and spoons and a big bowl and set to work carving.

So Haley had a decision to make.  Would she make my life miserable while I sewed or would she make her sister's life miserable while she carved.

She got a sweater and her shoes and headed outside.

I took a few pictures of the activities and then I got back to work. 

After a while her Big Sis opened the patio door and said "Do you know that Haley has the camera?"

"She has good light, maybe she will take some good shots."  I said.

Well, I was right.

Pretty soon she came in, marched through the house and out the front door.  She came back in with her pumpkin and headed out the patio door again.

That was when I stopped sewing and I jumped up and grabbed a Sharpie.

I headed out the door after her.

I knew that her sister was not going to be able to help her with her pumpkin and I didn't have the time nor the inclination to help her either.

I said "Haley do you want to draw on your pumpkin?"

I thought that she might make a cute face, she has been drawing some really great faces lately.

She said "Yeah!" and grabbed the pen.

She wrote her name on the top of the pumpkin, smiled, handed me the pen and headed back in the house. I grabbed the camera and chased her down as she got to the front porch.

That's my kid!

The Pumpkin Patch

Last weekend Haley's Big Sis insisted that we visit the pumpkin patch.  We didn't do it last year and she didn't want to miss it again.

We headed out late in the day, because we were busy in the morning.  It was pretty good weather, considering.  The place was packed and it wasn't easy finding a parking space.

Once inside Haley remembered all of the fun that she had had in the past and started leading us around to the things she remembered.  The hay pyramid, the farm animals, the hay maze and of course, the corn pit.

It is like a ball pit only with corn.  It is really pretty clever.  She had a great time in it two years ago and she remembered it.  It seemed like it was quite a bit bigger this year. 

She had a great time.

After that we got in line for the hay ride out to the pumpkins.  It was a long line, but it moved fairly quickly.  We talked about each tractor as it went by.  The farm had many different types of tractors, John Deere, Farmall, and others that I hadn't even heard of.  We talked about the colors. 

I tried to distract her from the pony rides.  She was convinced that she would ride on them, but I tried to explain to her that she was just too big. 

Soon we boarded the hay ride and we were off.  Haley loved the ride behind the tractor.  It was a bit bumpy in a couple of parts and the other passengers moaned and screamed for fun, that disturbed Haley a little bit.  I smiled at her and she seemed to realize that she wasn't in any danger.

We finally arrived and began looking for the perfect pumpkins.

Haley was unhappy with the state of most of the pumpkins.  Quite a few of them were smashed or broken or rotting.  She would choose one only to find out that it wouldn't do.  It took quite a while to find just the right one.

I have had a rule for a long time in our family that whoever selects a pumpkin must be able to carry it.  Haley knew that rule.  She didn't challenge it.  She carried her pumpkin like a trouper.

She never put it down.  Her sister set hers down several times and I was afraid that Haley would want to do that too, but she didn't.

We had a great time at the pumpkin patch.

Time to Retire

My girl is getting bigger.  She is outgrowing her clothes on a daily basis.  Most of the time it is no big deal.  Clothes move to the garage where they will eventually be gathered up and donated.

Sometimes a little more ceremony is in order.

Haley has outgrown her Cowgirl Shirt.

Haley's Grandma C gave her the shirt for her birthday about four years ago.  It is really nice.  It has sparkly snaps.  It is a really pretty color.  It looks good on Haley.

The Hat was a gift in a previous year.

Haley has worn her western shirt only a few times, but those times were memorable. 

She wore it when she competed in the Special Kids Rodeo at our county fair.  This is a rodeo that Haley participated in for five years.  My mom told me about it because it was put on by a organization that she belongs to.  We had also heard about it through the stable where Haley did her therapeutic riding.

The concept is that each child is paired with a Cowboy.  That cowboy takes the child they are paired with through five events, each designed after actual rodeo events.  The first year we participated was quite nerve racking for me.  Haley went off with this cowboy and we were supposed to sit in the stands.  I am sure you can imagine my trepidation.

That first year that Haley was involved in the Special Kids Rodeo she took home the coveted "Best All Around Cowgirl" award.  She has gotten a trophy every year for participating, but that first year her name was put on the giant trophy that resides at the fairgrounds. 

It was really cool.

She didn't dress up for every rodeo, but the last one that she was able to compete in she did.  She wore the Cowgirl Shirt.  I couldn't be there for that one, but her Dad took pictures as always.

Sawhorse Roping

Goat Tail Un-Tying

Stick Horse Racing

Wheel Barrow Racing

Barrel Racing on a real horse
(Haley's Favorite)

She also dressed as a Cowgirl that year for Halloween.

Last week at the girls' school was spirit week.  One of the days was Western Day.  We got out the Cowgirl Shirt and planned her outfit around it.  I put it on her and realized that the time had come.  I had to take it back off and put a shirt under it, because I was afraid the snaps might pop open at some point during the day.  I also had to roll up the sleeves because they were too short. 

Haley cannot stand it when a long sleeve doesn't reach her wrists.   I was a little worried that she wouldn't like them rolled up either, but she seemed OK with it.

I sent her out the door in the Cowgirl Shirt one last time knowing that when we took it off that night the next stop for the shirt after it was laundered would be the sack in the garage destined for donation.

It was a sad day for me, but I don't think Haley will miss it all that much. 

She has a lot of clothes.  Most of the time I can't even close her dresser drawers. 

Lucky for me I have the pictures.

Christmas Shopping Made Easy

Haley's Big Sis sends me an email each year listing in detail what she wants for Christmas.  The list is not long but, it is specific.  I appreciate that.  It makes my job easier.

I don't (usually) get that kind of help from Haley.

She doesn't really ask for anything. She is always happy to receive presents. She likes to open presents. She isn't picky.

She always likes new clothes.  She likes new videos.  Sometime it is easy, like when a movie comes out with toys.  Cars is a good example of that.  I got on EBay and bought every die-cast car they made.  I couldn't find them in the stores.

This year is different.  She has been asking for things, in her own way.

Haley gets catalogs in the mail that feature railroad memorabilia, t-shirts and model trains.  She likes to point out her favorites to me.  I usually make a comment about the picture or to be honest I usually just mumble "uh, huh..." 

I mean, she points to just about every picture, in every catalog many times a day, all day long, every day.

Now that she has earned the money for a t-shirt and a video from the catalogs it has changed a little bit.  After I comment she usually says "Nine Dollars."  Not everything in the catalog is nine dollars, but most prices end in .99 so to her that is what it means.

She especially likes to point out the model of her favorite steam engine, the 4449.  She tells me that it is nine dollars, but it is not. 

It is $499.00. 

I know that she wants it, that is obvious.  Little does she know that even if I had a momentary lack of judgement and bought it for her I wouldn't let her touch it.  That wouldn't work for her. 

She would want to touch it.  She would want to carry it in her purse.  She would want to sleep with it.

So the other day Haley was on the computer.  She was talking and she wanted my attention.  She wanted to show me something.  I walked over to the desk and looked over her shoulder. 

She was on EBay. 

She was pointing at a picture of the Daylight.  I looked closer.  It was a Christmas ornament.  It was pretty detailed.  It was about nine dollars.  I said "uh, huh...", distracted her, signed in to EBay and put it on my watch list.

This morning I found many of the same ornaments with many different prices.  I decided to bid on one and buy another.  I will put one away for her in it's original box.  The other one will be for her to touch.

To put in her purse.

To sleep with.

Christmas shopping made easy. 

Thanks, Haley.

Thrown Off

I hate early release days.

The schools in this area have early release days around the trimester change.  They are getting ready for teacher conferences.  The kids get out of school two hours early.  I imagine that each class time is reduced.  Lunch is probably at the wrong time too.

That happened yesterday.

Haley got off the bus.  She started her normal after school routine, including wanting a snack.  I was thinking to myself that she just ate lunch, but I thought a little snack wouldn't hurt her.  Then she wanted another one.  And then another one.  I opened her lunch box.  Sure enough it was empty.  I really don't know where she puts it all.

Her Big Sis had plans to make a lemon meringue pie when she got home from school.  She started on it right away.

Then things started to unravel.

As I sit here I don't remember what set her off, but she was off. Everything made her mad.  She was practically bristling.  I realized that I needed to go to the store for a few things.  I looked at her sister and realized that with what she was doing there was no way that I could leave Haley with her in that state. 

I asked Haley if she wanted to go to the store with me.  She said "Yeah."  And than she said "Bucks" which means Starbucks.  Haley and her sister have started walking to Starbucks for drinks.  Haley likes that.  Whenever we say store now that equates with Starbucks.  It used to mean The Mall to her.  I don't know which is worse.

I said "No Haley, we are not going to that store."

That set her off again.  I told her I needed to go upstairs for a few minutes and then we would go.  She started following me.  Screaming. Her Dad was upstairs working.  I could tell he was on the phone.  I quickly stopped her and pushed her back in to the kitchen, I could hear her Dad close the door to his office.  I knew if Haley ramped up a closed door would not be enough.  I tried to calm her down.  I asked her if she wanted to go with me again.  She said she did.  I sat her down on the couch and told her to pet her cat for a few minutes.  Her sister came over and started talking to her and petting the cat.

I ran upstairs and got ready.  When I came down we got her shoes on and left.

She was fine on the ride over and she was pretty good in the store. She likes to help me push the cart.  As we were leaving I could feel her getting a little upset.  I think she realized that she hadn't gotten anything. 

We got in the car and she rolled down the window.  I looked over my shoulder just as she stuck both of her hands out the window.  I told her to roll it back up again and then I locked it.  Then she proceeded to bang on the glass and scream.  I tried to talk to her.  To redirect - as we say - I asked her how she felt.  I asked her if something hurt.  I could see in the rear view mirror that she touched her head.  (Yeah, I was getting a headache too!)  I told her we would go home and have some medicine and relax on the couch.  I asked her if she wanted to watch a movie.  

She said "Yeah." 

"What movie do you want to watch?"  

"Cars."  

"OK, we will go home and watch Cars."  

That worked.

When we got home we both had a pain reliever and sat down on the couch.  After a while I think we both felt better.

I can't say with complete certainty that the change in her schedule caused all of that, but I have a strong suspicion that it did.  It has happened before.  She does better with a schedule.  She thrives on a schedule.  You mess up her schedule and this is what you get.

Well, it is what I get.

I hate early release days.

The Dance

Haley's Big Sis went to her Homecoming dance last weekend.  She had friends coming over.  She had plans to curl hair and put on makeup. 

I wasn't there.  I had other plans.  I gave my husband explicit instructions to take pictures.  I wanted pictures of everything.  I made sure that Big Sis knew of those plans so that she wouldn't shut him down.  I made sure that she knew it was important to me.

At a time that I thought everything would have calmed down I called my husband to find out how it went.

I wanted to know if the girls had made it.  I wanted to know if they looked pretty.  I wanted to know if their dates arrived.  I wanted to know if he took some good pictures.

Apparently all of those things happened, but what he wanted to tell me was that Haley wouldn't go to bed.  I called about forty-five minutes after nine.  She should have been asleep. 

I had forgotten about Haley. 

Not that she was there, but how she might react.

He said she was fine while everyone was here.  She was fine afterward too.  It was when he told her that it was time to go to sleep that she got upset.  She never said anything to him that would give him a clue as to why she was upset.  She just wouldn't cooperate with him.  She threw herself on the floor and laid there.  I asked him to hand her the phone.  I tried to talk to her.  I tried to get her to talk to me.  She didn't.  She grunted a couple of times.  I told her that she needed to go to bed. 

I wished my husband good luck and I hung up.

The next day I looked at the pictures my husband had taken and I got a little more of a clue as to what had happened.

Haley's Big Sis and her friend curled their hair.  They put make-up on.  They got dressed up in pretty dresses.  Then they put make-up on Haley.  Then the boys came.  Haley's Dad took pictures of them.  He took pictures of the each couple, of the couples together, of Haley with all of them.

Then they left.

It didn't take much thought to figure out why she was upset.  It is Fall.  Halloween is on the calendar.  Haley is ready.  She wants to Trick-or-Treat.

Everyone got dressed up.  They put make-up on.  Haley got make-up on too.  Then they left her.

I imagine that she thought she was missing Trick-or-Treat.

When Haley got home from school I made a big deal about the fact that I have not yet made her costume.  I have the fabric and we have talked about it.  I made sure that she knows that she hasn't missed anything.

Halloween is still on the calendar.

In the excitement I forgot about Haley.  It doesn't happen very often, but when it does it hurts.  I know this won't be the last time that her sister gets all dressed up and leaves her home. 

I have to remember Haley next time.

I Like It

I can usually tell how Haley feels about something.  I can tell if she is happy, or sad, or angry.  I can tell if she is having fun.

I know what she likes.

I know these things by how she acts and what she does.  She doesn't tell me with words.  I gauge her reactions.

Lately though she has added a new phrase to her repertoire. 

She says "I like it."

It is so fun to hear her say that.

It started with The Sweater that she got from her Grandma J.  She rubbed the arm of the sweater and said "So soft."  She sniffed it and said "Smells good."  Then she said "I like it."

Now she has started to use the phrase for other things, like videos, her horses and peanut butter on crackers.

It says to me that she is learning.  She is putting her world in context.  She has an opinion.

I like it.

My Anchor

There is no training manual for How To Be A Parent. 

There is also no training manual for How To Be A Parent to A Child With Special Needs.

I am making this up as I go.

I have help though. 

She may not know it, or realize how much she helps, but I am indeed helped by Haley's Big Sis.

I don't just mean that she helps me with Haley. 

She does that. 

She takes care of her sister when her Dad and I have somewhere else to be.  She helps us take care of Haley when we are out and about.  She plays with Haley sometimes.  She includes her.  That is all great.  And it does help, but that is not what I mean.

Haley's Big Sis helps me be who I am.  She helps me stay who I am.

In some ways Haley's Big Sis is a lot like me.  We share interests.  We like the same movies, the same actors, the same music, the same books.  We each like certain things that the other doesn't, but for the most part we have the same tastes.  We like a lot of the same foods. We like to go shopping together.  We go to rock concerts together. 


We have inside jokes (that drive my husband crazy.)

We can be watching TV and a preview for a movie comes on.  My daughter says "Mom, it's that kid."  I say "From that one movie."  She says "Yeah, with that girl."  I say "Yeah." and we both laugh.

And my husband groans.

It happens frequently.  It cracks me up.

She keeps me sane by allowing me to act a little insane.

It is hard to explain.  The point is that it helps.  I don't know what I would do without her.  She is a junior in high school.  Next year she will be a senior.  Then she will do something else.  College hopefully, but something.

I am scared.

I don't know what I will do without her.

Was it something I said?

I scheduled a haircut appointment for Haley at 3:00 pm.

The bus drops her off at our house anywhere between 2:00 pm and 2:15 pm, so I thought there would be enough time for Haley to have a snack and also some time for me to wash Haley's hair.

Haley will not put her head back in the sink at the salon. Our stylist cannot wash Haley's hair. I learned a long time ago that I had to do it at home.  Her hair is still wet when we get there, wet enough anyway that all she has to do is spray a little more water on it. She also puts a cream in it that keeps it workable while she cuts it. It is fascinating to watch her cut Haley's hair.  Curly hair is really a different animal.

So, anyway, I thought I had enough time.

I had planned out what I was going to do. I was going to let Haley come in and do her normal after school routine. I was going to let her take off her shoes and jacket and put them away. Then I was going to let her check on our cat, go to the bathroom. wash her hands, and get a snack.  Then I would wash her hair and we would go.

So the bus pulls up and Haley gets out. We walk in to the house.

And...

I lose my mind.

I tell her that she has a haircut appointment.

I tell her that I want to wash her hair.

I realize what I have done and I try to back track.  I try to explain myself. I try to reassure her that she has time for a snack.

It is too late. I am ruined.

Haley started touching her hair and giving me a really concerned almost scared look. I don't know what she was thinking. I said "Your hair is going to be pretty."

"Pretty!" she cried. She cried. She touched her hair some more.

Oh, no...

"Yes, your hair is pretty now, but it needs a little trim. You like to get your hair cut. Are you excited to see Camille?" (name changed)

"Camille?"

"Yes. Do you want to see her?"

"Yeah."

OK. So then I came back to my senses and we took off her shoes and her coat and put them away. She did the rest of her routine and I offered her a snack. I didn't wait for her to ask for it. I made it and put it in front of her. This agitated her too. She got upset all over again.  I turned the TV on and tried to get her to focus on her show. 

That helped.

When she was done with her snack I told her it was time to wash her hair. I asked her if I could wash her hair in the sink. She looked a little concerned. She agreed and we walked over to the sink. I tried to help her bend over the sink and she balked. I don't know why I thought that was going to work. I told her that it was OK.

We would go take a quick bath.

We went upstairs and as we walked in to the bathroom she started crying again. At this point I was dumbfounded. I don't know if she was still upset about the assault she got when she got home, or if something else was going on. I tried to explain to her that we were just going to wash her hair and get her dressed again and then we would go. She cried the entire time she got undressed and while the tub filled. She cried while I washed her hair. She cried while I dried her hair and helped her get dressed.

I told her it was time to go.

"Go," she said.

"Yes, it is time, let's go."

Then she was fine. We got her shoes and jacket on and left. The haircut was fine. She sat completely still. She was very quiet. When we left she touched her hair and said "Pretty."

I knew better.

I had a plan. I sabotaged myself and I don't even know why.

I got ahead of myself.

I must remember this lesson in the future.

How Do You Feel?

School started.  Leaves fell.  The weather turned.  Rain started falling. 

Germs entered our house.

All four of us have been sick.  Ill.  Slight sore throats, runny stuffy noses, general malaise... just not right.

Not all at once mind you.  One after another. 

A constant run-on sentence of discontent.  I am so over it!

Anyway, as the weather changes our needs change.  The clothes we wear have more;  longer pant legs, longer sleeves, thicker fabric and layers.  For some of us that transition comes naturally. 

Some of us need a little help.

Haley doesn't seem to know how she feels.  She has a high tolerance for pain, we have known that for a long time.  We found out the hard way.  Apparently she also has a high tolerance for discomfort.  Remember when your Mom would say "Put a sweater on, I'm cold." 

It is just like that.  If I am cold I assume she is and I dress her accordingly.

She wore sandals all summer.  She didn't wear socks.  Most of the time she wore shorts, but even when she wore long pants she didn't wear socks.  So lately she is running around the house without socks and I am cold. 

So I say "Haley, do you want some socks on?"

"Yeah."

So I put socks on her.  Otherwise she would have gone without socks all day.  If I am cold I put a sweater on her.  Most of the time she leaves it on.  Sometimes she takes it off.  There are times when she has gotten a sweater or jacket out of her drawer and put it on by herself, or asked for help with it.

I assume she feels cool, but maybe she just likes the sweater.

Last night Haley's pull-up leaked.  Her pants were a little wet.  I looked at the clock and realized that it was pretty close to her bed time.  Her Big Sis runs around the house all of the time in pajama bottoms and so do I on occasion (especially when I am sick.)  I thought they would be easier for her to put on than pants, so I told her to go upstairs and put on pajama bottoms.

She did that, but there were some other changes too.  Haley is a creature of habit.  Some processes don't change.  So in her mind if she was putting on pajamas other things had to happen.

She had taken off her glasses and her socks.

She does that before she goes to bed.  When pajamas go on glasses come off.  She will not wear socks to bed, so the socks came off too. It didn't matter that she would be up another hour or so. 

That is just the way it is.

So there she is without socks again.  And I am freezing...

The Drama

There has been a lot of drama around here lately. 

Some good, some not so good.

I will start with the good.

Haley loves to watch videos.  She watches many videos a day.  Sometimes the same video over and over all day long.  Sometimes a different video is put in after the last one ends.  She (we) have watched some videos so many times that she (we) have them memorized.

I can't help it.  I have the kind of memory and flair for the dramatic that I tend to repeat what has been said on the screen.  Or I anticipate it.

Haley does the same thing.

It started a long time ago.  She would mimic what was happening on a video.  Not really saying the same words, but making sounds that sounded like what had just been said.  Especially if it was said with enthusiasm.  Later on she would repeat the last word of a sentence.  Then some time later she started anticipating what the character was about to say.  She also reacted to what was said.  She would laugh if something was funny, or silly, or scary. 

I mean it might have been scary to another kid, but to her apparently it was funny.  Her favorite characters seem to be the villains.

This week something has changed.

Not only is she saying full phrases (not just the last word) she is saying them with the character.  She is acting them out.  If the character turns to the left when they say it she does too.  If they flourish with their arms, so does she. 

It is fascinating to watch. 

And, like I said, I have a tendency toward the dramatic so I have a tendency to join her.

The Drama...

Now the not so good.

Haley does chores for money.  She has been doing really well with the chart on the refrigerator that tracks her money. She had been earning money for a train video by taking out the recycling.  Most of the time I just say "Haley, can you take out the recycling?"  and she comes running.  Sometimes she doesn't and I have to remind her the reason she does it.  "Haley, do you want to earn a dollar?"  She says "Yeah."  And then she does it.  If her Dad asks her she usually gives him the "teenager grunt" and doesn't move.  Then I ask her and she complies.

The other day I asked her to take out the recycling. 

She didn't move.

I reminded her about the money.

Nope.

I told her that if she didn't get up and do it that I would. 

Still no response.  So I took it out. 

When I came back in and put the basket back in the pantry she walked in to the room and pointed at the white board.  I told her that I would not be putting an 'X' on the board because she did not do the job. 

She threw herself on the floor and had a fit.  She pointed to the refrigerator and yelled "Money!"

"Haley, I took out the recycling by myself.  You didn't help me.  You didn't earn any money."

Her fit went on for quite a while. 

I left the room.

The Drama...

Mixed Emotions

Thursday afternoon Haley came home on the bus and gave me a note from her teacher.

Haley has had a runny nose for the second half of the day.  We have had half of our class out with the seasonal bug. Otherwise, today went well.  Haley is finally adjusting to our new situation over here.  Kids really like her, as does all of our staff in both programs  We are beginning to track goals after doing extensive work at building the class... I hope all is well at home.

I kind of knew that was going to happen.  Haley's Big Sis had been sick the week before and then I got a mild version of it on the weekend.  It is really hard when Haley gets sick.  She can't tell me how she feels so I just have to guess.  It sort of helped that I already had it, I know how I felt.  I re-stocked our medicine cabinet and prepared myself for the worst.

We didn't get much sleep that night.

Haley was very stuffy and she got up to have me help her blow her nose approximately once an hour.  In the middle of the night it was time to give her more medicine.  After that I think we got a couple of hours of uninterrupted sleep.

It is better during the day.  She has learned to get herself a Kleenex and blow her nose on her own.  I guess she doesn't do that at night because she is a little groggy.  She stayed home from school and took it easy.

Last night we slept all night. 

I woke up and looked at the clock.  I was amazed and relieved.  Then another feeling swept over me.  Worry.  Dread.  Fear.

Bear with me, I will explain.

Haley gets up at least once a night and comes in to our room and then I get up and put her back in bed and cover her up.  Usually when she climbs back in bed the sheet and blanket and quilt are a mess.  They are either at one side of the bed or the other or clear down at the foot of the bed.  So I assume that she kicks off the covers, gets cold, and then doesn't know how to cover herself back up.

There was a time when she was small and I was less patient that I just told her to go back to bed.  I vaguely remember that.  Some nights she did leave my room.  Whether she actually got back in bed was debatable.  She sometimes played computer.  Sometimes watched TV.  Sometimes played with her toys.  Sometimes fell asleep on the couch.  Other times she didn't leave my room.  She just laid down on the floor by my bed and fell back asleep.

That was a long time ago.

It is kind of weird to think about it now.  I have been putting her back in bed like this for a while.  I don't know how long, or when it started, but it is normal.  I think I have only slept through the night a handful of times since she was born.

And on those occasions I do feel more rested, but I also get this feeling when I wake up.

"She didn't wake me up in the middle of the night.  What if she isn't sleeping?  What if she - wow, I can't even type this - died."

I have no reason to think that she could.  It's crazy.  It just comes over me.  And when it does it is paralyzing.  What would I do without her?  I don't think I could function.  Really.

I lay there with my heart pounding.  Then I listen.  Maybe I will hear some movement coming from her room.  Sometimes I do and then I am OK.  If I don't I get up and check on her.

I know that mothers of small babies do that all of the time.  I did. 

I still do.

She was fine.  She was downstairs on the computer.  I gave her a kiss on the forehead and said "You slept through the night.  Did it feel good to have a nice long sleep?"

"Yeah." she said.

Then I sat down on the couch with my laptop and saw this. 

Where's Molly?  (watch the video)

I often say that we are lucky.  I say that Haley is lucky that we live in a time where there are programs for kids like her.  Where there are medical advancements.  What if she had been born in another time.  Would she have been born?  Would she have developed like she has?  What if we didn't have Early Intervention, The ARC, her therapies, her pre-school, her life skills classes? 

What if we didn't have any support?

We have a long way to go, but we have come so far.  I am glad. 

I have her.


We all do.

Overheard...

As I was watching for Haley's bus I heard a conversation between her Dad and her Big Sis.

Haley's Dad:  "Last night when you and Mom were out Haley and I were talking about Lion King.  I said, 'Mufasa' and she said 'Simba,' then I said 'Mufasa' and she said 'Simba' and then I said 'Mufasa' and she yelled 'Bonzai!'"

They both cracked up.

Haley's Big Sis:  "When Haley and I walked down to Starbuck's I asked her about her teacher.  She talked the whole way down there.  I don't know what she was saying, but she was talking.  Then after we got our drinks at Starbuck's all she said the whole way back was 'Mmmmm. Good.'"

They laughed some more.

I love that.

They were talking about her, but it wasn't gossip.  It wasn't malicious.  They were sharing. 

We share around here.

We like to update each other on Haley's progress.  It helps if she does something or says something to know if we are the first one to see it or hear it, or if it is a pattern.  We like to keep each other up to date and we like to hear when she is learning and growing.

All three of us are in her corner.  All of the time.

It's working!

Things I have been saying to Haley's Big Sis for years, that I haven't said to Haley: (until recently)

"Put your shoes away after you take them off."

"It's time to set the table."

"Go upstairs and change your clothes."

"If you want to buy something at the store you had better bring your wallet."

"If you are chilly go put on a sweater."

"If you want to be paid you had better take out the recycling."

These are all things that I have said to Haley's Big Sis over the years, with mixed results.  When I say them to Haley, she follows through. 

It is refreshing. 

I don't know why I waited so long.

I am not saying that her Dad has the same results with the same words.  She still gives him the teenager grunt.

So soft...

When we visited Grandma and Grandpa a while back Haley's Grandma gave me a top and a sweater.  She didn't specify why she didn't want them she just told me if I wanted them that was great and if I didn't she wouldn't be offended.

I took them home and tried them on.

They both fit, but they really weren't my style.

I had a feeling that they would be someone's style, however.  Haley's.

I put them in her room and waited.  Sure enough, a little while later she brought me the sweater.  She stood there holding it with a question on her face.  I told her that it was from her Grandma and she immediately wanted to put it on.  She rubbed the sleeve and declared that it was "So soft!"

I mentioned that it smelled nice, it still smelled like Grandma. 

That did it.

That sweater became the most important article of clothing that Haley owns.  That is saying a lot, because Haley loves clothes.  Haley also has a drawer full of t-shirts depticting her favorite trains and steam engines and yet this sweater is her favorite.

She wants to wear it all of the time.  Even when it is not appropriate.  I hate seeing her walking around in a sweater when it is 80 degrees, but she does it.

As soon as she comes home from school she gets the sweater and puts it on.  Then she walks around rubbing the sleeve up and down saying "So soft..." and "Smells good..." even though it has been washed numerous times and no longer smells like Grandma.

One day Haley's Big Sis asked me why I don't put the sweater on her to go to school.  I hadn't really thought about it, but I really didn't really have an answer for her.  So the next day I made sure that Haley's outfit would coordinate with the sweater and I put it on her.  I buttoned the top button and sent her to school.

She came home with the sweater still on, even though it was very warm.  I realized that I should write this post about the sweater (Grandma doesn't know yet how important it has become) and I wanted to take a picture of Haley in it.  Haley was not in the mood to get her picture taken, but I got one smile.

This is Haley rubbing the sleeve.

She wanted to wear it again the next day.  She picked out a shirt that went pretty well with it so I let her.  She wanted it buttoned all the way up.  When she came home it was really too warm to wear it and I tried to explain that to her.  She wouldn't take it off.

A little while later she came up to me and patted her stomach proudly.  I could not figure out what she was trying to tell me.  She wanted me to follow her.  I did.  She pointed to the sweater on the chair and patted her tummy again.  I realized that she was trying to show me that she had taken the sweater off.

"Oh, you took the sweater off?  Is that more comfortable?"

"Yeah, better." she said.

Luckily Haley wanted to wear something else this morning. 

The other top that we got from Grandma.