Monday, January 31, 2011

Not What I Expected

So, if you remember, Haley had a Zoo trip planned.

We went on Saturday.

We decided to take the Metropolitan Area Express, or MAX for short.  It makes the trip to the Zoo a bit longer, but it also makes it a little less of a hassle.  I don't like to park at the Zoo.  I have had some experiences parking at the Zoo that I would like to forget, I can't, but I would like to. 

I was excited to ride MAX because I thought Haley would be excited to ride MAX.

She wasn't.

It's not like she had a fit and wouldn't get on.  She just seemed luke warm about it.  She was quiet.  She sat still and looked out of the window occasionally, she played with the horses in her purse.

She repeated the announcements that came over the speaker before and after each stop.  That was kind of funny because what she was repeating was Spanish.  A female voice comes on and says "The doors are closing." and then a male voice comes on and says the same thing in Spanish.  I don't know Spanish, but I got that puertas means doors, the rest, not so much.  Haley repeated the last sound she heard.  I don't know what it was.

She started asking me about the Zoo, like she thought I was pulling her leg and we were never going to get to the Zoo.  I kept trying to reassure her, that indeed we were on the way to the Zoo and that we would be there soon.  It didn't help.  She kept asking me and her tone got more and more irate.  Her sister and her Dad tried to tell her the same thing.  She wasn't buying it.

Finally when we got close I pointed to the sign that changed with each stop.  I said "What does that say?" because I know she recognizes the word ZOO.  We then entered the tunnel.  

She likes tunnels.

She perked up a little bit.

When we got off of the elevator and walked out into the light she finally saw what it was that she was expecting.  She was happy.

We thought she would like the ride on MAX, but I guess we can't really be sure of anything can we. 

There is more about Haley's trip to the Zoo to come.

Friday, January 28, 2011


When babies are born they have the most amazing little fingers.  They are small and thin and perfect.  The nails are so tiny and so perfectly shaped.

I loved to just sit and stare at my babies fingernails.

As they grow their fingers begin to change.  They get bigger of course, but they are also less and less fragile.  The fingernails keep their shape for a while.  Then, when they can crawl and get into things they change again.  The nails grow and have to be cut.  Dirt gets under them. 

My babies' fingers are long and thin, but their nails got short and fat.  They became "kid fingernails."

About a year ago something terrible happened.

Haley started chewing on her nails.

Her beautiful baby fingernails turned kid nails became ragged edged. 

They became dangerous. 

They had to be trimmed, but there wasn't much to trim.  They developed hang nails.  She chewed on those.

They bled.

I was at my wits end.

Then one day a couple of months ago Haley's Big Sis painted Haley's fingernails.  To put it more accurately, she painted the ends of her fingers where her nails should have been.

Haley thought it was the greatest thing in the world.  She proudly showed them to everyone.  The teachers at school must have "oohed" and "awed."  They mentioned them in her note that comes home.  It seemed to work.  They chipped right away so I repainted them.  I did that quite often in the first couple of weeks.

Haley likes her "nails" she likes to hold out her hand and announce what color her nails are. 

They have been "RED", "BLUE", "YELLOW", "ORANGE", and "PINK."

She doesn't chew on them anymore.  I give her a manicure once a week. 

They grow fast now. They get long. It's great!

They are not so much "kid fingernails" anymore.

They belong to a girl, a teenager, or should I say "a young lady."

Thursday, January 27, 2011

We Will Rock You

I am so lucky. 

I love Rock-n-Roll and my kids seem to share my taste in music. 

The other day we were driving home with the radio tuned to my favorite station. 

Queen came on.  "We Will Rock You."

From the back seat I hear...

Stomp. Stomp. Clap.

Stomp. Stomp. Clap. 

I turn around to see Haley stomping and clapping to the music.  I turn back to the street and smile.

Next thing I hear is singing.

Haley and her Big Sis were both singing.

To one of my favorite songs.

I love those kids.

Wednesday, January 26, 2011

Fly On The Wall

I wish I could go to Haley's school and watch her in action.  I can't, however, if she knows I am there.  It wouldn't be the same.

I imagine a lot of kids are like that.  They have their school persona and their home persona.  I know Haley does.  I would be willing to bet her Big Sis does too.

The notes from the teacher have been interesting this week.  Yesterday it said that Haley and her Miss D played a board game together.  She didn't say which one.  She said that Haley just took her piece all the way around the board on her turn, she didn't count the spaces.  The teacher thought that was funny and said that they will play more board games in the future.

More power to her.

I gave up playing board games with Haley a long time ago.  That probably sounds horrible, but it is the truth.  Haley doesn't have the patience for board games.  Frankly I think she doesn't see the point.  I might try card games in the future, but I am done with board games.

Today her note said that she did a really good job dressing herself for P.E.  That I would love to see.  When I am around she acts like she doesn't have the use of her limbs.  They drop lifelessly to her sides and she sighs heavily.  It is pretty pathetic really.

The note also said that she played Ping Pong in P.E.  I asked her if she hit the ball with the paddle.  She said "Yeah."  Uh, huh.  I would like to see that too.  It's not that I don't believe my daughter, or that I don't believe she could do it.  I just want to see it.

I wish I could be a fly on the wall at Haley's school.

Tuesday, January 25, 2011

Making Plans

Haley brought home a drawing yesterday.  Someone had folded a piece of paper into quarters and numbered each quarter.  There was a pencil sketch in each quarter.  Haley was really excited about it. 

She showed it to me and I asked her what it was.  She pointed to each drawing in turn.  Number one was a frog, number two was a bird, number three was a pig and number four was a tiger.  I recognized most of them.  I was glad she told me that number four was a tiger, I thought it was a cat.

She put the drawing on the refrigerator.  She likes to hang her artwork on the refrigerator.  She hangs something on the refrigerator everyday.  She is not particular.  It doesn't have to be her own work.

This morning she pointed to the drawing on the refrigerator and told me about all of the animals again.  Then she got out a dry erase marker, she wanted me to write cat, frog, pig and bird on the white board. Apparently the tiger is a cat this morning. 

I told her that she could write those words. 

She didn't buy it.

I started spelling the words for her, I know she knows her letters.  I thought she would write them as I said them.  She wasn't fooled, she wanted me to write them. 

I held my hand over hers and we wrote C A T and F R O G and B I R D and P I G. 

She read the words again.  Then she said "animals" and then she said "zoo."   Then she pointed at the calendar on the refrigerator and she wanted me to write zoo on the calendar.  I hesitated and then I wrote it.

I went upstairs to get something and pretty soon Haley was behind me.  I turned to see what she was up to and she held out a dollar to me.  She said "dollar."  I said "Yes, that is a dollar."  She turned and went back downstairs.  I have no idea where that dollar came from. 

I went downstairs again and found her in the kitchen.  When I walked in she said "money."  She had her wallet on the island and was counting dimes.  She said "One, two, three, four, five."  I looked and sure enough she had five dimes.  I told her that she was right and that she had 50 cents.  I opened her wallet and found the five dollar bill that I knew was in there.  I added the dollar to it and asked her what she had.  We talked about the five and the one and I told her she had six.  We put all of the money in her wallet.  She turned to me and held up the wallet and said "money, zoo, go see animals."

Haley's sister has been wanting to go to the zoo as well.  I wrote it on Saturday.  I hope Big Sis is feeling better by then. 

As far as Haley is concerned we are going.

Monday, January 24, 2011

I'm Here

I know you probably thought I was long gone.  I feel long gone.  Anyway...

My first baby has been sick.  Again.  I don't know if she has what Haley had a week ago, or if it is something else.  It looks like something else and it acts like something else.  I really hope it's not something else 'cause that might mean that Haley will get it too. 




I really can't stand it when my kids are sick.  I would rather that I was sick.  I won't say that I would rather my husband was sick, that is another ball of wax altogether.

My life has been going along about the same as it usually does.  I just hear my daughter suffering and see my daughter suffering and I worry.  It's what I do.  I am still getting most of what I need to do done. 

Most of it.  I finally cleaned the floors today.  And I haven't been blogging.  Sorry.

Haley is fine.

Haley is normal.  She is doing her normal things. 

She has been playing with her stable - I am so glad I got that for her. 

She has been playing with her dolls. 

She has been watching train videos. 

She has been watching "the extra stuff" on her favorite movies on the laptop.  I love it when she does that, she can click around to her heart's content and I don't have to do it for her.

She has been eating us out of house and home.


I hope everyone at your house is well.

Monday, January 17, 2011

Friday Field Trip

Haley's class sometimes walks to a local grocery store on Fridays to purchase ingredients that they cook with in class.  It is a neat program and they get to eat what they make.

Haley likes the field trip because they stop at a pet store.  She likes to look at the animals.

On Friday when she got off of the bus she told me that she went to the "animal store" and saw "kitties" and "birds."

I have mentioned before that I get a form that comes home with Haley that tells me what went on at school.  Sometimes the form is informative, sometimes it isn't.  I usually don't get one when they go on field trips, I think they have a lot on their plates on those days.  I was pleasantly surprised this Friday.

I thought I would share with you what Haley's teacher wrote:

"Haley enjoyed our field trip today.   She loved looking at the cats.  We have noticed she has been coming out of her shell more.  She will sit at her desk and talk to herself and those around her.  She really loved our cooking lesson and Friday movie - Lady and the Tramp.  She had some beans and a hot dog.  She also helped pick up trash around school grounds as part of service day."

On the chart that ticks off what she did it said; Reading - labels, street signs, Cooking - beans and hot dogs, Math - using money to buy groceries, I chose to - color, PE - played with balls, Field Trip - walked to store.

I love to get that much information.  It gave me something to talk to Haley about.  She was really excited to tell me about her day.

She immediately went to the cupboard and got Lady and the Tramp out and then she wanted a snack.  I guess the beans and hot dog didn't fill her up.

Friday, January 14, 2011

I Know It's My Fault

I take full responsibility for what I am about to tell you.  I did it.  It is my fault.  That doesn't take away the fact that it drives me crazy.

I just spent the last hour, time which I wanted to dedicate to typing up some notes from a meeting I attended last night, being my daughter's snack dispenser/minion.

I have mentioned before, that out of necessity and my own heebeejeebees I started giving Haley her snacks many years ago in small white ramekins.  The kind that you might make individual creme brulees in.  It is a good use of them, because I never make creme brulee. 

Haley brings me the snack container and the ramekin and I fill the ramekin, close the container, give it back to her and she puts it away.

It is a great system.

This evening she has been bringing me a bag of chips every minute and a half.  I am trying to type my notes.  I get about half a sentence typed and there she is with the bag and the ramekin.  After I dole out the chips I have to wash my hands because I don't want to mess up the keyboard.

She got thirsty, of course.  So she brought me her cup (with a lid) and a bottle of Gatorade.  Again my fault.

She was sick, I thought she might have lost some fluids so I bought her some Gatorade.  That was several days ago, she likes it.  I bought some more.  She wants it all the time.

She brings me the snack and then the drink and then the snack and then the drink. I type a sentence then I get her one or the other, I wash my hands, I sit back down and type another sentence and there she is again.

I was on the verge of screaming.

I know that a full bottle of Gatorade for a kid her size in one afternoon is not a good idea, I have been watering it down to make it last.

She finally finished the bag of chips (she wouldn't just eat out of the bag, I asked) and the bottle of Gatorade.  She wanted her hands washed and then she went upstairs to play.


I finally got to finish my notes and got them emailed.  I thought I would never finish it.

It's all my fault, but I am not complaining. 

I like that she is neat.  I am glad she is feeling better.  When she was sick she wasn't up near that much.  I got a little rest but I didn't like the reason I got it.  She is back to normal. 

Normal can be exhausting.

Thursday, January 13, 2011

John 9

Part of my morning routine (or sometimes whenever I have time) is looking at other blogs by mom's of kids with special needs.

I look to them for many reasons.  It is nice to know that there are others out there that have similar issues in their lives.  It is nice to hear how they deal with them, and sometimes that they aren't dealing with them.  I don't always deal well with our issues.

Today I found a blog that is beautiful in so many ways, but her post really touched me.  She spoke about a verse from the Bible that has come to her many times, one that she feels connected to.  One that helps her.

If you have time read her post here.

Tuesday, January 11, 2011


Haley is doing pretty well.  She is very talkative today and we haven't had any more events like those last night and this morning.

Please go to the poll at the top right of this page and let me know how often you check in with us.


My Baby is Sick

Haley is in bed asleep and the bus will be here in a few minutes.  I will have to go out and tell the driver that Haley isn't going to school today.

She woke me up at 2:00 AM and just wanted to be put back in bed.  She was cold.  There was nothing unusual about that, it happens all the time.

Then at 3:00 AM she woke me up again and headed to the bathroom.

That is when all of the trouble started.  What began as a pretty routine thing ended with a full on bath and change of pajamas.  I just kept apologizing to her.  "Honey, I am sorry.  I'm sorry that you are cold.  I'm sorry that it is taking so long to clean you up.  I am sorry."

If I could have taken it all upon myself, just to take it away from her I would have.  Haley hasn't been sick like that in at least six years, maybe longer.  I remember nursing a little kid that was barely three feet long laying on the couch.

I put her back in bed and tucked her in and rubbed her back for a while.  I asked her if she was feeling any better.  She said "better."  She gave me the weakest, saddest little smile.

I went back to bed, but I couldn't sleep.  I just kept lying there in full alert mode, listening for any sound that she was getting up again.  I felt bad for about an hour until I realized that my husband was not in the bed with me.  I relaxed a little then, because I was at least not keeping him awake, but I never really got very good sleep.

Haley woke up again about the normal time and we did it all over again.

I put her back in bed.  I hope she sleeps for a while.  I don't know what the day will bring but I know one thing.  Haley and I are not going anywhere today.

Monday, January 10, 2011

Magic White Board

Haley likes me to write words on a white board that hangs on the refrigerator.

She tells me what words to write.  I write them.  She reads them.  She spells them.  She traces them.  She refers to them often.  They are important to her.

She learned how to say Grandma by doing that.

A couple of days ago she wanted me to write:

Tree Farm - Grandpa - Tractor

Then she pointed to the calendar that also hangs on the refrigerator and said "Tree Farm."

I redirected her back to the original white board.

I am afraid that she thinks that we will go to the Tree Farm because it is written on the refrigerator.

Does she think it is magic or something?

Friday, January 7, 2011

Toy Surprise

So, Haley came home with another toy surprise in her backpack today.  Again, no explanation.

It is a Leap Frog digital watch.  She thinks it is cool, of course, because they gave it to her at school.  I asked her if it was a prize or a treasure.  No answer.  I didn't really expect one.

They sent home the form that they usually send home. 

The note at the bottom of the form said how excited she was to share that she talked to Grandma and Grandpa on the phone last night.  Translation:  She listened to Grandma and Grandpa talk.  She gets to listen on the extension while her Dad talks to his parents.  All three of them ask her questions, but they never get responses.  Sometimes she nods her head or kind of silently giggles, but that is usually it.  I heard that she said "Hi" and "Bye" last night.

The note said that she was very happy today.  That she worked really hard.  That she watched Peter Pan during seventh period and that she enjoyed it.  It didn't say anything about the watch.

Her Dad set the time for her and put it on her wrist.

It will be interesting to see how long this lasts.  I actually have been thinking about getting her an identifying bracelet.  One that says what she cannnot, her name, my name, our phone number, her disability.  I haven't gotten her one yet because I was afraid that she wouldn't wear it.  It wouldn't be as bulky as the watch.

We shall see.

Tuesday, January 4, 2011

While we were on vacation, visiting Haley's grandparents we went to Port Townsend for the express purpose of riding the new ferry.

When we got there it was lunchtime.

We went to a restaurant on the main drag, it was wonderful. We had the best fish and chips and Haley was really good. She fed herself and was very well behaved, she even used the restroom.

We walked around town a little, but it was really cold and windy. We needed to move the Yukon closer to the ferry terminal so we all piled back in.  Haley was riding in the very back with her sister. We drove down the street and found another parking spot and stopped. I got out and was standing in the parking lot adjusting my earmuffs and my gloves when my husband called to me.

He said he needed my help, Haley wouldn't get out of the car.

I went over to the car and looked in. Haley and her sister were still in the back seat. I said "Come on Haley it's time to get out."

She said "No."

I laughed, I couldn't help it, this child agrees to everything. If I ask her anything she says "Yeah." Even nonsense questions get a "Yeah." Haley's Sis said "I asked her to get out and she said 'no.'  She even shook her head like this." Haley's Sis shook her head, it was the universally recognized gesture that meant No.

I ended up grabbing her leg and pulling. I didn't really pull her out of the car, but I think she got the gist that I wasn't going to take "no" for an answer and she reluctantly came along. As we walked to the terminal Haley continuted to make her objections. She just kept saying "no," as I explained to her what we were going to do.

When it was time to get on the ferry she started getting hysterical. She was crying and shouting "No!" and I was kind of getting freaked out.

There have been times in my life when I really didn't want to do something; times that I almost felt I had a premonition that something bad would happen. I don't know if that is the way Haley was feeling, but her reluctance was starting to get to me.  It had been really windy in the last couple of days and there was some question that the ferry would even be running when we got there.  There were signs around the terminal that said something to the effect that if there was rough weather the ferry may not run and that walk on passengers could be stranded.  The water was choppy.  I was already a bit nervous myself. 

I was strong, however, I just kept pushing her on to the ferry.
She seemed scared, but her Grandma was standing right next to her and that seemed to help a little.  I sat down in a chair and asked her to come and sit with me.  She wouldn't move.  She had taken hold of the steel divider between the windows and was holding on for dear life.

She watched as her Dad stood outside the glass and took pictures.  He was taking pictures of the dock and the ferry and turning to take pictures of us.  It seemed to calm her down a little.  He came in and asked us if we wanted to walk around and check out the new ferry. 

Again Haley was reluctant, but I nudged her along. 

We went up one more level and found ourselves in an area that housed the elevator and the stairway.  Haley looked out the window at this point and said "Pretty."  I agreed that the view was pretty and we stood there for some time.  Grandpa came to stand next to us and talked to Haley a little while.  The ferry made a wide turn and I started to get a little queasy.  I told Haley that I wanted to go down the stairs and sit a little while.  She let me lead her.

When we got to our destination we had to get off the ferry.  I got nervous because we would have to turn right around and get back on in a few minutes and I didn't want a repeat of the last time.  As soon as we got off the ferry Haley said "Fun."  Then she indicated that she needed to use the restroom.  We went in and I discovered that she was wet. 

These days she is wearing an overnight pull-up and they don't have Velcro sides so I have to take off her pants and her shoes to change them.  I was in the middle of that process when Haley's Sis came in and said it was time to get back on the ferry. 

I started sweating.

I tried to hurry as much as I could and we rushed out of the bathroom and onto the ferry.  I didn't have time for protests.  I think Haley was aware of that.  We got back on and we sat down at one of the booths.  We stayed there the whole ride back and Haley rode without saying much, every once in a while she would look out the window and say "Pretty."

When we docked and got off the ferry she said "Fun."

So I don't know if she was scared, if she thought we should have headed back to Grandma and Grandpa's house after lunch or if she was just cold.  She didn't want to go on that ferry, but apparently she was glad she did.

Monday, January 3, 2011

Time to Share

As I was making Haley's lunch this morning she came up to me and said "Grandpa's house tractor ride."  It took me a moment, but then I realized that she was starting to tell me what she did over the vacation so that I could fill out the form that she uses to share her home experiences with her teacher and aides.

I said "Hang on a sec, Haley," and I got her form; I wish I could have recorded what happened next, but it was happening fast and believe me I don't work fast in the morning.

I started to write something about Haley going to her Grandma and Grandpa's house and she just kept talking.

"Open presents, yay, 844. Boat ride. Lunch, yum, good. Heather. Horses, presents."; There was more, but like I said it's morning.

So to translate these are the things that I wrote about on her form:

Haley got to visit her Grandma and Grandpa over the vacation; While we were there she got to ride her Grandpa's John Deere tractor.

Haley is getting really too big to do this. It is kind of sad. Her Grandpa usually sits her in front of him on the seat so that he can operate the tractor. Her legs are so long that it is really difficult for him to do that. No way is she riding that thing solo. After some discussion we decided that next time Grandma is going to ride with her. Haley is actually taller than her Grandma now.

She also got to see Heather, the cow that lives behind Grandma and Grandpa.

Haley just loves seeing that cow. She got to feed her a branch after her ride on the tractor.

Haley also got to ride in a ferry and we had lunch.

We went on a special trip with the express purpose of riding a new ferry. This is quite a story. I will write about it soon.

Haley loved opening presents. She got a new stable for her toy horses, four new horses, Toy Story 3 figurines and some train videos.

You can read about her gifts here.

Haley watched her new UP 844 video.

That is really the only video she has watched since we got home.
Haley went train watching with her Dad.

This is something she does every Sunday and this last Sunday was no exception.
Haley went shopping and bought four new pairs of pants.

This seems like ancient history now, but a couple of days before Christmas I took her shopping. We spent a lot of time in the dressing room trying on many pairs of pants. My assumptions about her size were way off.  I actually bought her pants that were four sizes bigger than I would have guessed.  We got some really good deals.

Haley had honey mustard chicken, rice and veggies.

We always report what she ate the night before.

Haley had a bath.

Those are the things that Haley did on her vacation; those are the things that she wanted me to write on her form. I told her that if she was that excited to tell me all she had to do was go to school and tell her teacher, she really didn't need the form.

I know better.

She will clam up when she gets to school, but hopefully if they read the form back to her they may get one or two words out of her. My guess is that they will be:




Sunday, January 2, 2011

Quiet Play

My daughter spends a lot of time on the computer.  I don't mind, obviously, because I think she is learning things.  She is learning skills about the computer, but she is also listening, which I think is a useful skill.  I would like her to do something else every once in a while, however.

It would seem that she has found something else to do.

She took her new stable into our bedroom to play with.

She has been at it for a while now. 

We can hear her talking. 

It is a wonderful sound.

Saturday, January 1, 2011

Time Off

Winter vacation is winding down.  We have had a very nice holiday so far.

Haley enjoyed Christmas.  She was so excited to see some new presents under the tree on Christmas Eve, but she was obviously a bit disappointed in her gift.  She got pajamas, of course, and I think she was expecting something else.

Christmas morning was what she was waiting for.  She sat in front of the tree enjoying her "gift from Santa"  we always have one unwrapped present under the tree and this year Haley got a stable for her horses.  She loves to carry it around the house and put her horses inside it.

She loved her stocking surprises, she got two Hot Wheels cars as well as two miniature Schleich horses along with her candy.  I asked her what her horses names were.  The sounds she made became the horses names, one is Lea and the other is Ila.

It took us about a half an hour to open the gifts that were under the tree.  We were thankful that Grandma C had wrapped several gifts for Haley, because she just kept wanting to open more.  She tried to open some of her sister's gifts for her as well.  My Mom gave Haley a sticker book of horses, a beautiful wall hanging with horses on it and two Schleich horses.  Haley named one of them something that sounded like Elliot so that is it's name now, the other one matches a horse in the sticker book that is called a Shire Horse so that became it's name.

We gave Haley a Thomas the Tank Engine video set, a video about the Southern Pacific and a Shrek Christmas DVD.  My husband made her a calendar of some of his railroad photography and her sister gave her a really cool Toy Story 3 figurine set. 

She really loves her gifts.

We packed for our trip up to Grandma and Grandpa's in the afternoon.  The next day we headed north to visit them.  Haley got to do all of the things she expects to do at Grandma and Grandpa's and they both commented that she didn't seem quite as shy as she usually does.

They know what she likes and they gave her a DVD about the 844, another one of her favorite engines and a pair of socks with horses on them.  She also got some money, but she wasn't as thrilled with that as I expected her to be.  I am sure that will change when I tell her that she can go shopping.

The morning we were leaving I asked Haley if she was ready to go home and she said "Yeah, Shadow lap."  She wanted to see her cat, so I know she had enjoyed her trip, but she was done. 

We have been very lazy this holiday, which is nice. 


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