Will wonders never cease?

Evolution of a Hug

noreply@blogger.com (Haley's Mom) — Tue, 31 Jan 2012 23:13:00 +0000

I am a hugger.

My friends that are huggers know that about me. They know to give me a hug when I see them. I am not obnoxious about it (I hope.) If I know someone isn't a hugger or if I feel some hesitation from them I don't force it.

I need at least ten hugs a day.

My kids aren't huggers. I expect hugs though, they don't get a free pass.

Getting Haley to give a good hug has been a process. Haley's Hugs are pretty famous. Especially the side hug, the back and bump and the run-by.

There was some confusion for a while what a hug even was. Haley thought that when I said hugs I meant Kisses. Sometimes when I ask for a kiss, I get a hug.

Haley's Big Sis discovered that if you hold your arms up like a touchdown signal Haley will do the same and then you can give her a hug and it feels like she is hugging you back.

Lately that hasn't been enough for me. I need the squeeze for it to be real.

So I asked for it.

I put my arms up, Haley put her arms up. I went in for the hug. Her arms stayed up.

I said "Haley, I need a squeeze."

She did it. She put her arms around me and she gave me a squeeze.

"Haley! That's it! You gave me a hug!"

"Good job."

"Yes, you did a good job. Mom likes those kind of hugs."

Her hugs have been getting better. We have been practicing.

I hug her a lot.

I love that girl!

I am getting real hugs now. Every once in a while I have to remind her to squeeze. It kind of feels like cheating, but not enough for me to stop.

I am a hugger.

A Little Sticky

noreply@blogger.com (Haley's Mom) — Mon, 30 Jan 2012 17:42:00 +0000

Haley had a dentist appointment on Friday morning. It was the best one yet.

Well, kind of.

She sat right down and let the hygienist put the seat back down. She was very still and very calm. She opened her mouth wider every time she was asked.

I kept resisting the urge to get my camera out and take pictures, or perhaps video. I knew that if I did I would break the spell. Every little thing the the hygienist did I was sure was going to set her off, but it never happened. She was able to polish all of her teeth. Floss them. She even scraped the tartar from her teeth.

I was floored.

Never did I think that the day would come when Haley would lay back and allow someone to pick at her teeth with a sharp instrument. When she was done the hygienist sat her up and Haley reached out to me.

She wanted a high five.

She knew that she had done well. I was so proud. I told her how good she was. I said "It was so much easier that way wasn't it? You didn't have to hold your head up the whole time."

She said "Yeah. Good job."

The dentist wasn't quite ready to see her yet so she was able to get up and get her prize. She is so used to that routine that she didn't even need me. The hygienist gave her a plastic bag and she went in to the prize room. She chose a little car and a bouncy ball that lights up. Then she got herself a new toothbrush, some flossers and a new timer.

She sat back down and we waited for the dentist.

Soon the dentist came in and laid her back in the chair again. There was a slight hesitation, but she let her. The dentist asked her to open her mouth and she used the instruments to examine her teeth. She poked and poked and then said "This one is a little sticky."

She has a cavity.

The dentist wants to put sealants on several of her teeth too, but she doesn't want to do it all at once. She also thinks that we should have an orthodontist consultation. I had a feeling that would happen some day. At this point I don't see Haley getting braces, but we will see.

So I made an appointment for Haley to get a filling.

That should be interesting.

Beautiful

noreply@blogger.com (Haley's Mom) — Fri, 27 Jan 2012 16:04:00 +0000

Haley stepped off the bus yesterday afternoon with a great big smile on her face. She didn’t hesitate a moment. Her foot hit the pavement and she was practically skipping up the drive way. I loved watching her – especially with the sun shining like it was.

It was beautiful.

I was watching her from our front porch. As she stepped on to the porch I smiled and said “You seem happy.”

She said “yeah.”

“Did you have a good day today?” I asked.

“Yeah. Fun day. Walk. Ucky. Wak. Wak. Wak.”

“You went for a walk today?”

“Yeah... Ucky. Wak. Wak. Wak.”

“You saw ducks?”

“Yeah.”

“They were quacking?”

“Yeah. Fun day.”

That was officially the first time that she volunteered to tell me what happened in school. That was the first time that she told me something that happened to her during school that I didn’t already know.

It was beautiful.

Why?

noreply@blogger.com (Haley's Mom) — Thu, 26 Jan 2012 22:50:00 +0000

We are all on this planet for a reason. I believe that. I believe that God created us for a purpose.

Some people know what their purpose is, some are still searching. It is my sincere hope that everyone finds their purpose so that they can fulfill it. I honestly don't believe that God would put anyone on this planet without a purpose.

I am not completely sure if I know what mine is yet, but I feel like I am getting there.

What about Haley? What is her purpose here?

I don't know, but I know she has one. I know it deep down in my soul. Because everyone does.

Everyone.

I have thought about this before. Actually I think about it a lot. I am a thinker. I am also a worrier, but that is for another discussion.

This morning I began my day, much like I often do, reading the blogs of other mothers of children with special needs. I was struck by a story that I at first couldn't really believe. Not because it was unbelievable, but because it was such an affront to nature. To the nature that God created. Then as I read more I became distraught and finally angry.

Please read this blog post by a fellow mom of a child with special needs - and if you have time go on to read about it from the perspective of the mom of a happy child that needs a kidney. A kidney that her doctor doesn't think she deserves because she is cognitively impaired.

Think about that.

Haley is healthy. Thank God! What if she needed a kidney? What if a doctor said that she couldn't have it because it says "mentally retarded" on her paperwork? The mother of this happy child was able to speak through her tears. I am not sure that I could, much like her husband.

The very thought of it makes my heart ache.

We all have a purpose. We are all here for a reason. Some of us know our purpose. Some are still searching. Some may never know, but God does.

God knows us. Each one of us. He has a purpose for our lives.

We all deserve to live it out.

Back to The Future

noreply@blogger.com (Haley's Mom) — Thu, 26 Jan 2012 00:18:00 +0000

Now that Haley can no longer choose The Grinch when she wants to watch a video she has been cycling through some of her old stand-bys.

In the last week or so she has gotten into Back To The Future. We have the three DVD set - all three movies. She usually chooses the third one because it has horses and a train. She watched it non-stop (read: anytime she wanted to watch a video) for about a week.

Then one day she got out the VHS tape of the second one. I don't really like her watching that one as much. It is quite a bit darker and there is more cussing in it, there is cussing in all three, but that one seems worse. She watched it for a couple of days and then she wanted to watch the first one.

The original.

I hadn't seen it in a long time and neither had she. She had a blast.

She laughed out loud during most of it. She got really animated. She started repeating what they were saying. Everything they were saying.

Doc! Marty! Butthead! Shit! You name it she was yelling it.

I chose to go the "ignore it, don't make a big deal out of it" route.

Haley's Big Sis and I had some difficulty stifling our giggles, but we didn't admonish her. We just let it go. She doesn't usually say things like that from movies outside the context of watching the movies. That would be a big step.

I might welcome it.

Maybe.

That's Better

noreply@blogger.com (Haley's Mom) — Fri, 20 Jan 2012 17:22:00 +0000

Haley doesn't have the best track record with being in an audience.

She doesn't like to sit still. She makes weird and sometimes rude noises. She really does not like to be shushed, she shushes back and then it escalates.

Taking her to the movies is out of the question. I tried it twice and both times were a disaster.

Her sister's school choir concerts were pure torture for me. I left in the middle of one crying, because I really wanted to watch my daughter sing. After that my husband and I ended up either taking turns going to them or getting a sitter, which isn't always easy.

The same with plays. That was nicer though because there were more performances. I went to one and he went to the other.

Our church experiences have been mixed. If I am there and sitting next to her she is pretty good. If I have to be somewhere else for the majority of the time she doesn't do very well at all.

We have a new situation.

Haley's Big Sis is on a school basketball team this year and her Dad and I really want to watch the games. The first home game that came up my husband said "What are we going to do about Haley?" I just said that we should take her and see how it goes. We took separate cars so one of us could take her home, but we didn't need to. She was great. She sat there the whole time and didn't whine at all.

She stood up when we stood up, she clapped, she yelled, she even changed the way she was sitting when she started to get uncomfortable. I was really proud of her.

At first I don't think she realized that her sister was out on the court playing. We tried to point her out to her, but I don't think she got it. It helped when her sister came in to the bench and Haley could see her up close. We tried to point her out and asked Haley if she could see her, but she didn't seem to like that.

There was a game last night.

Haley came off the bus in a really foul mood. Her sister asked me if I was going to come to her game alone. I said "No, we are all coming." She was concerned that Haley would behave badly at the game.

We all went. It was fine.

I think that there is something about the acoustics, the people and the mood of a basketball game. She knows she can make noise and clap and get silly and her Dad and I won't stop her. It is freeing for her. There were a few moments when she started making her "raspberries" and giggling that I got a little concerned, but there was so much surrounding noise it wasn't bad. I distracted her by clapping and turning it in to a cheer. She clapped with me and her Dad even joined us.

Haley was in a bad mood before the game and after the game, but at the game she was great.

Pretty Please

noreply@blogger.com (Haley's Mom) — Fri, 13 Jan 2012 01:51:00 +0000

My husband and I have always used "Please" and "Thank you" with our daughters. If we want them to do something or go somewhere or hand us something we use those words and we expect them to use them too.

I have learned that I get better results if I don't yell at my daughters from another room when asking them to do something. I try to walk up to them, get their attention and then make my request using please and thank you. I am not perfect. I forget sometimes, but I do try.

I have noticed lately that Haley responds really well to please.

Sometimes my husband sounds demanding when he doesn't use please and I am sure it sounds that way to her too.

When Haley's Dad asks her to take out the recycling it sounds like this:

"Haley, it's recycling time." or "Haley, take out the recycling." The response he gets is usually "ugh!" (read a grunt)

I tend to say "Haley, can you please take out the recycling?" or "Would you help me take out the recycling, please?" to which she usually says "Yeah," gets up and comes in the kitchen to help me. It may be a coincidence, but I don't think so.

It works when I take Haley to the restroom too.

I usually have her go first even if I am the one that has to go. I have always thought that if she hears me going she might go in her pull-up and then our trip is wasted (sorry if this is getting a little personal.) If I follow her in and watch her without saying much she will pull down her pants, sit down and then immediately stand back up. Then I have to tell her to sit down and try again. Sometimes that works, but most of the time it doesn't. Now if I say "Try to pee, please." She relaxes and pretty soon I hear a little tinkle (again I apologize.)

When she wants something I always insist that she uses please and thank you.

If she wants a glass of juice or help putting a DVD in the player I insist that she ask me in a full sentence, followed by please. Sometimes she uses full sentences on her own, but she leaves off the please. I always ask her to say please and remind her to say thank you. Maybe that will be the next lesson that she gets. We have been working on it for a long time.

She did so well with the last one.

Dad. Dinner. Ready.

noreply@blogger.com (Haley's Mom) — Wed, 11 Jan 2012 16:48:00 +0000

One of the things that I have been trying to get Haley to do lately is call her Dad for dinner.

The main reason is convenience. If she calls him than I don't have to, but there is another reason. It gets her to use her big voice in a nice way. She does have one. She uses it when she is angry or upset. We want to hear her voice. And not just when she is ticked at us.

So I have been asking her to call her Dad.

The first couple of times I asked her to go upstairs and tell him that dinner was ready quietly. That was the way that I did it and the way that I have asked her sister to do it in the past. The main reason is that I don't like yelling in the house. There is a history behind that. I can't stand it when someone is upstairs and they yell down to me and expect me to yell back. It annoys me.

For a while we used our telephones to talk to each other, they have an intercom system on them. That works pretty well, but our phones are cordless so they tend to wander around the house. I might try to call my husband while he is in his office, but the phone in our bedroom or in my office might ring. It could take up to three tries to get the right one.

I decided that getting Haley to use her big voice was more important than my need for a relatively quiet environment.

So at first I would say "Haley, let's go upstairs and let Dad know that dinner is ready." I would go up with her and then prompt her to say "Dad. Dinner is ready." Sometimes she would, sometimes she wouldn't. She might balk at the going upstairs, or once we got up there she would not cooperate. She might mouth the words, but even though she was standing right next to him he couldn't hear her. After a while I got her to at least say a facsimile of "Dad. Dinner is ready." It really didn't sound like it.

Then after we talked to her teacher about how quiet she is in school we decided to work on the volume of her request. That is when I would stand at the bottom of the stairs with her and prompt her. I would say "Say Dad." She would whisper "Dad." Then I would say it louder. Then she would whisper it again. Then I would yell "DAD!" at the top of my voice. She might say it loud enough that he could hear her (he is smart enough to wait until he hears her, not just me.) Then he would say "What is it Haley?" Then I would prompt her to say the rest. It could take awhile. I had to plan it so that dinner didn't burn or get cold.

So far not convenient.

Well, this has been going on for a while. I don't know how long exactly, but several months at least.

I have gotten to the point that I can say "Haley, go tell Dad that dinner is ready." and she gets up and goes to the bottom of the stairs and in a fairly loud voice says something like "Daaa..nnerr...edddy." and then she heads back to whatever it was she was doing. I can usually hear her, but her Dad usually doesn't. If I am in a hurry I will run to the bottom of the stairs and say "Did you hear that?"

"No."

"Oh, well dinner's ready."

"OK"

Sometimes if I have more time and patience I will ask her to do it again. Sometimes I ask her if she thinks he heard her. She usually says "Yeah." I wait a little while. If he doesn't come down I make her do it again.

Sometimes I ask her to call him and she just sits there or she grunts. She is a teenager after all.

So last night I said "Haley, let Dad know that dinner is ready please."

She got up, went to the bottom of the stairs and said "Dad. Dinner. Ready." Clear as day, big and loud. He said "Thanks Haley," and came right down. She got a big high five from both of us.

All of that work has paid off.

Good Riddance

noreply@blogger.com (Haley's Mom) — Tue, 10 Jan 2012 01:02:00 +0000

I finally took down and put away all of the Christmas decorations.

Don't get me wrong, I love my Christmas decorations.

It is just that putting away the decorations means putting away the Christmas videos, specifically How The Grinch Stole Christmas.

Don't get me wrong, I love How The Grinch Stole Christmas.

The original, that is. Not the remake with Jim Carrey. I really don't like that one. I didn't like it the first time I saw it and I still don't after I have seen it, oh, about a thousand times.

We have about eight Christmas videos. I pack them with the decorations, because I thought they would be a little more special that way. Haley loves videos. She watches them a lot. She likes to watch the same videos over and over again.

This is true of the Christmas videos as well.

For the most part I like the Christmas videos that we have, but we do have Beauty and the Beast: The Enchanted Christmas, I don't like that one. I liked it at first, but it is another one that doesn't hold up after about a hundred viewings.

Haley's favorites have always been the Grinches, both of them. This year they ramped up to the only ones she wanted to watch. So it was one or the other. She did watch a few minutes of a train video every once in a while, but for the most part it was "all Grinch all the time."

It has really gotten to the point that I can't stand either one of them, and that is sad. Haley's Big Sis got so tired of it that she relegated Haley to watching the DVD's on the computer so that they weren't on the TV.

I was with her on that one.

That meant Haley was in another room and if we could hear it we would yell "Haley, turn it down!" If she did we were happy. If she didn't we got up and turned it down for her - man I wish I could lock the volume on that laptop!

So, anyway, putting away Christmas meant putting away the Grinches.

It was a relief.

Haley has figured out how to watch them on YouTube, however, so that is not the end of it.

Unfortunately.

What Can She Do?

noreply@blogger.com (Haley's Mom) — Fri, 06 Jan 2012 17:01:00 +0000

I met with Haley's teacher, her speech therapist and the school psychologist yesterday afternoon for Haley's Three Year Evaluation. Afterward I spoke with her teacher Mr. B about her upcoming stint in the Apartment. We learned about the apartment during her last IEP.

Haley will be in the Apartment next week. I plan to go in on Wednesday and observe her. I am so excited!

Haley's teacher wanted to talk about some of the things that she should work on while she is in the Apartment. One thing that we had already talked about is breakfast. We talked about how she could work on pouring her own cereal and pouring the rice milk into it.

He asked me to look around the kitchen and try to think of things that she could work on that I felt she could do at home. Things that would make her life easier - and mine too.

I had a really hard time coming up with things.

We talked about how it might not be a good idea for her to work with the microwave because if she got familiar with it she could put something in and punch the time up too high here at home and start a fire. He also said that as a general rule they don't try to teach anything having to do with the stove or the oven, unless a parent requests it.

He did say that they planned to have the kids work on laundry. I hadn't even thought of that, but I think that might be something that she can do.

He also suggested vacuuming. Our vacuum is really hard to push, even for me, but we do have a sweeper vac that she is interested in so I agreed that she could learn to do that.

Another thing that I think she could manage is making her bed. I don't make her do that now, but she could do it. I told him that I wouldn't even be very picky. If she could learn to pull the covers up that would be enough for me. She wouldn't have to tuck anything.

We talked some more about things that she could do and also about the logistics of how I can observe her and then I left to watch her sister play basketball. Haley and her Dad joined me just before the game started. We had a lot of fun watching her Big Sis play. Haley jumped out of her skin the first time the buzzer went off, but after that she was OK. I am really happy that she will sit still for her sister's games, I was nervous that she wouldn't cooperate.

When we got home Haley immediately got the jar of peanuts out of the cupboard and brought them to me with a little white ramekin. I filled her cup and put the lid back on the peanuts and handed them back to her. She put the peanuts away and sat down at the computer on my desk.

I was getting ready to head out the door to go to my hand bell rehearsal when I heard "MORE!" from my office. I said "Just a second, Haley." and started to head to the kitchen to get her more peanuts. Haley's Big Sis yelled "Get it yourself, Haley!" from the kitchen. My first thought was, she doesn't know how. She does, of course, know how to get the jar, but she doesn't know how to open it.

I walked in to my office and and said "Come with me Haley." I had to say it twice. Then Haley got up and followed me to the kitchen. I told her to get the peanuts and she did. Then I showed her how to unscrew the cap. She tried, but it didn't budge. I put my hand over her hand and tried to turn it. She pulled her hand away and grunted. I ended up taking the top off of the jar and then without even thinking about it I poured the peanuts in to the cup and handed it to her.

So I guess I found another thing that she can learn to do. I think I will save that for home, however.

I think she will have enough to keep her busy next week.

I Lied

noreply@blogger.com (Haley's Mom) — Thu, 05 Jan 2012 17:27:00 +0000

Last night Haley and I went to her confirmation class at church. Pastor has been gone for a while and the class was taught by an interim Pastor during that time. It was nice to have him back.

When we walked in he asked Haley if she had any horses in her purse. He remembered that she usually carries horses with her. I knew that she didn't have any horses in there so I told her to show him what she did have.

She pulled out the "80," the tractor that her Grandma and Grandpa gave her for Christmas. Then she pulled out the Daylight and it's Tender and hooked them up. He asked her if she had gotten them for Christmas. I laughed and had to tell him the story of how I Blew It.

He asked if it was a special engine.

I went in to a very detailed description of the engine and why it was special to Haley.

"The Daylight is a steam engine that was built in 1941 by the Lima Locomotive Works. It pulled the Southern Pacific "Daylight" coaches from Los Angeles to San Francisco until 1955 when it was decommissioned. It was displayed at Oaks Park in 1958. In 1974 it was fixed up and painted red, white and blue and ran again for America's Bicentennial pulling the Freedom Train. After 9/11 it was painted that same way again, but it is normally red and orange and black. It is housed down in Portland and they use it to run special excursions now and then. We just rode behind it at Christmas time for the Holiday Express. Haley likes all trains, but this engine is her favorite."

I turned to Haley and said "It is scary how much I know about that engine."

Pastor agreed that I really did seem to know a lot.

We talked about other trains in the the area, including the steam engine at the Zoo. One of the boys in the class asked me if I knew about a couple of other engines that he had seen around and about some tracks near where he lives. I told him I didn't know, but I would find out for him.

Pastor went around the table and asked all of the kids about their Christmas vacations and then he said we were going to play a game so that we could get to know each other better. We would each tell two stories. One would something that happened to us and one would be made up and then we would all choose which we thought was true.

When it came around to Haley I told her stories.

First I said "When Haley was about three years old she fell out of bed and broke her collarbone."

I looked at Haley, she was quietly dressing and undressing her little Polly Pocket dolls.

Then I said "One time Haley got to ride in the cab of the 4449 and she even got to blow the whistle."

Haley gasped and put her hand up to my face, then she covered her mouth with her hand and giggled. Then she started "talking." I didn't understand what she said, but from the look on her face it could have been something like: "I did not do that Mom!" or "That would have been so cool, but it is not true!" None of us understood exactly what she said, but we all got the gist.

I was caught in a lie.

Everyone agreed that the first story was true and it was.

I will never forget that night.

A Compliment

noreply@blogger.com (Haley's Mom) — Wed, 04 Jan 2012 17:37:00 +0000

Haley got money for Christmas.

My child loves to shop and she understands that she needs money to shop, so when her Big Sis wanted to go to the Mall she was ready.

Big Sis had some definite ideas about what she was looking for and and where we would find it, so we followed her. We went in to one of her favorite stores; Forever 21. The store was cram packed with clothes of all kinds and colors. The prices are pretty good too. I thought Haley would like it.

Wrong.

We walked in and headed to a rack. Haley turned around and headed back out. I looked up from the shirt I was trying to show her and she was gone. I turned and saw her leaving the store. I caught up with her and explained to her that we were going to shop in this store for a while and then we would look at different stores, but right now she needed to shop here.

After that she was fine. She even found several things that she liked. She wanted to carry them herself.

We shopped for a while and then her sister decided it was time to try things on. I told Haley that I wanted her to try her things on as well and we headed for the dressing rooms. Big Sis did not want to share a dressing room (they were pretty small) so we got our own.

All but one sweater fit her well. I explained all of the reasons that I didn't think that the sweater worked, but I could tell that she still wanted it. It was orange. It had stripes. She wanted it.

Haley got ahead of me by a few steps leaving the dressing room and I quietly handed the orange striped sweater to the attendant. As I caught up with her there were two girls about Haley's age standing by the entrance to the dressing rooms. One of them leaned in to Haley smiling and trying to make eye contact with her and said "I like your top."

I said "Say Thank You," but I don't think she did. She was ahead of me and I couldn't hear her.

Haley probably didn't even notice that the girl spoke to her. She was on a mission to buy her new clothes. I walked up next to her and looked at her profile, she was focused straight ahead. I turned back to smile at the girl that spoke to Haley, but I didn't see her.

All I could see was the look on her friend's face.

I couldn't tell what she might be thinking. She might have thought that Haley was rude for not saying anything or that she seemed different somehow, I don't know. I pushed away the thought that she might be trying to figure out if there was something wrong with her.

I normally don't notice things like that.

I did when Haley was little. I used to get all caught up in what people thought when she threw temper tantrums in public or when people asked her a question and she didn't answer it. I read other blogs by parents of children with special needs and it seems like every single one has at least one post that is a rant against the people that give them funny looks or make stupid comments.

I stopped paying attention to other people's looks and comments about Haley a long time ago. I learned that it did me no good to dwell on what other people thought. My daughter is the way she is. There are no excuses. If someone wanted to start a conversation I would be happy to answer questions and have a dialog, but I don't pay attention to funny looks.

I did that day though.

After that girl gave Haley that look (I don't think she even knew that I saw her) I noticed that a lot of people were giving Haley funny looks. After a while I stopped and looked at her myself. I didn't see anything amiss. She didn't have food on her face or a milk moustache, she didn't have a booger sticking out of her nose or smudges on her glasses. Her hair looked good and we had already established that she was wearing a nice top (thank you very much.) So I really don't know what people were looking at.

Did she look that different from everyone else in the store?

I sure didn't think so.

That is probably why I don't pay much attention to other people. I am not saying that I have always been that way. When I was young I paid a lot of attention to what others thought and said. I put up with my fair share of teasing and bullying. I spent some time crying by myself.

If any negative attention was directed at me I would probably get hot and flushed and want to run.

I think most people care to some extent what other people think of them. No one wants other people to look at them funny. Many of us would like it if someone gave us a compliment. If they said they liked our top or our hairdo we would smile, we would say "Thank You."

Haley won't.

She really doesn't care.

She likes what she likes. She liked the top she was wearing. I remember when she picked it out. She liked the color and she thought it was "cute," but she really doesn't care if anyone else likes it or says anything about it.

She goes on her merry way. She is happier than most of us too.

Yadow Yap

noreply@blogger.com (Haley's Mom) — Wed, 04 Jan 2012 00:29:00 +0000

Going back to school today must have tuckered Haley out.

As soon as she had her shoes and coat off and put away and had visited the bathroom she laid down on the couch and said "Blankie."

I covered her up with a blanket.

Then she said "Yadow Yap" which means Shadow Lap.

I asked her if she needed to recover from a rough day at school and she laughed out loud. She found that really funny.

I got our cat Shadow and put him on her lap.

And there they stayed...until Shadow got up and had to be put back in his room.

2011 Milestones

noreply@blogger.com (Haley's Mom) — Mon, 02 Jan 2012 20:06:00 +0000

Looking back over 2011: the following are my personal favorites.

Haley is pretty agreeable most of the time, but in January Haley said No.

My daughter impresses me every now and then. In February she impressed me twice. I was afraid that she would no longer be able to ride Grandpa's tractor, but she put the Pedal to the Metal. When she started going to Yoga classes she not only impressed me with her skill, but her instructor thought that she was Amazing too!

In March I started trusting Haley to do more on her own. I found that all she needed were some Encouraging Words.

I spent some time away from Haley in April when I went to visit my sister and her new baby. I was pleasantly surprised to find that my husband posted something on this blog while I was gone. It was so fun to find out that she is capable of getting her own Kleenex.

In May we celebrate the birth of Haley's Big Sis and I discovered that Haley prefers to get presents rather than give them. Happy Birthday to You!

Haley has never really liked to draw so I was completely surprised when not only did she take a post-it note pad and pen out of my drawer, but she used it to draw a self-portrait; It's Haley. Haley's time in middle school ended in June and Oh, Baby did she celebrate!

We traveled to Montana in July to spend a week with my family in a log cabin. We had a great time. Getting together with my family brought back a lot of memories, most notably I remembered My Dad. Haley celebrated her birthday and I think the best present she got was Grandma C's Present.

August: My baby is growing up, but it nice to know that she loves her Mama; I Wanna Hold Your Hand.

September means back to school and for Haley this year it meant a new school. I thought the transition to High School would be easy because all of the other transitions have been, but I learned to Assume Nothing and because of that little lesson I decided to give Haley's new teacher An Introduction. Haley did well in her new school. She even surprised me by communicating with me on a whole new level when Rain Went Away.

In October I had Mixed Emotions and I wanted to ask Haley "How Do You Feel?" Later on in the month I no longer had to guess, she told me her opinion about the sweater her Grandma had given her; I Like It.

I started shopping for Christmas presents in November and I was so excited about one gift in particular and then I Blew It!

December was fun. Haley got to see her favorite steam engines and all of her grandparents and of course she got some great Christmas presents. I really enjoy going back and reading my little record of the year. I also really enjoy reading your Comments, so keep them coming!

2011 was a great year and I am looking forward to what 2012 has in store for us.

I keeee you

noreply@blogger.com (Haley's Mom) — Fri, 30 Dec 2011 19:28:00 +0000

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...

noreply@blogger.com (Haley's Mom) — Wed, 28 Dec 2011 20:54:00 +0000

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...

noreply@blogger.com (Haley's Mom) — Wed, 28 Dec 2011 20:53:00 +0000

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!

noreply@blogger.com (Haley's Mom) — Tue, 20 Dec 2011 20:30:00 +0000

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...

noreply@blogger.com (Haley's Mom) — Thu, 15 Dec 2011 23:28:00 +0000

...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

noreply@blogger.com (Haley's Mom) — Fri, 02 Dec 2011 00:24:00 +0000

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

noreply@blogger.com (Haley's Mom) — Wed, 30 Nov 2011 21:59:00 +0000

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

noreply@blogger.com (Haley's Mom) — Tue, 29 Nov 2011 16:23:00 +0000

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

noreply@blogger.com (Haley's Mom) — Mon, 21 Nov 2011 21:25:00 +0000

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

noreply@blogger.com (Haley's Mom) — Wed, 09 Nov 2011 16:18:00 +0000

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

noreply@blogger.com (Haley's Mom) — Thu, 03 Nov 2011 15:45:00 +0000

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"