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?