Tuesday, June 29, 2010

An echo and then some

Haley is a mimic, which is generally a good thing.  I think it helps her to learn when she repeats what she hears.  The thing is, she doesn't only repeat words.  I was hoping it was a phase she was going through, and maybe it is, but it happens daily.

Haley is amused by bodily sounds, like most kids her age.  She repeats those sounds when she hears them.  Burps, sneezes, hiccoughs, coughs and others (use your imagination.)  She repeats them and repeats them.  Often I am surprised by a sound and I excuse myself, but it is already too late.

It's pretty funny how accurately she can make these sounds.  There are times, when someone in the family has a cold, that I worry that she has come down with it as well.  The sounds start out as almost exact replicas, but then she gets into it and adds her own embellishments.  It can go on for a while. 

The funny thing is that I am still not used to it, and it has been happening for several years.  I am always amazed at how much amusement she gets out of it and how long she can drag it out.

Sometimes one of us will be downstairs and sneeze and a few seconds later we hear a sneeze coming from upstairs.  It is like an echo.  Echos only happen once however.  The sneezing from upstairs will last for an hour.

It starts out really funny if we are in the car and going on a road trip, but as you can imagine it doesn't take long for us to tire of it.  Then it becomes somewhat of an exercise in futility.  She makes her noises and we laugh, and then she does it some more and pretty soon we are asking her to stop, it doesn't work.  We are talking about a kid who can watch Back to the Future 3 up to five times a day for two and half weeks straight.  She doesn't really get tired of it.

I hope she does someday though and I hope it is soon.

Monday, June 28, 2010

Tell us about your weekend

My husband and I celebrated our 20th wedding anniversary this weekend by staying at a wonderful B & B.  We were able to drop Haley and her Big Sis off with their Grandma and Grandpa on our way there.  We had a great time on our own and I think Haley had a great time too.

When we got to the house to pick up the girls Haley seemed happy to see us.  She came up to me and gave me a hug then started telling me about her weekend.  She was animated and excited, but very quiet.  I had to listen very carefully and repeat some of her words to verify that I had understood her.  Grandma was standing close by and nodding when I guessed right.

We had dinner with them before we had to head back home.   During dinner we heard about the exciting weekend they had.  They visited their tree farm on Friday and went for a ride behind live steam on a 7 1/2" gauge railroad at a local park on Saturday.  Haley got to drive Grandpa's tractor and feed the cow behind their house.  They had a lot of fun.  They ate really well too, Haley had to tell me all about the hamburgers they had (I think Grandma did that on purpose.)

Most of these stories came from Grandma and Grandpa and Haley's Big Sis.  Haley was very quiet.

Until it was time for us to leave.  We gave Grandma and Grandpa hugs and said goodbye and got in the Yukon.  We drove to the end of the  driveway and then Haley got her voice back.  From the back seat we heard "Trees.  Trains.  Ride.  Steam Engine.  Yeah.  Cars.  Caboose.  Fun.  Tractor ride.  Bye Heather.  Leaves.  Eat.  Fun.  Grandpa lap.  Yeah.  Hamburger..."  She was practically yelling. 

Haley  must have left her voice somewhere in the Yukon and she got it back out so she could use it to tell us everything.  This went on for almost an hour until she fell asleep.

Friday, June 25, 2010

A big transition

I got a letter last Saturday that said there would be major changes at Haley's school.  It is one of the schools that didn't fare so well in the No Child Left Behind evaluations.  The letter told me all about the many changes that would be happening and focused on how wonderful the school would be when all of the changes had been implemented. 

It said there was a list on the back of the letter listing all of the teachers that would be leaving.  I turned the letter over.  There were a lot of teachers leaving.  Most notably Haley's teacher. her one on one helper, her back up one on one helper and as far as I could tell the entire Life Skill's staff.

Monday morning I emailed Haley's teacher and asked her if that meant that the whole Life Skills program would be moving to another school and if so what did that mean for Haley.

She emailed me back.  No, she was leaving to teach Kindergarten to autistic children and her staff had opted to leave the school as well.

So instead of having one more year before the big transition to high school Haley will have a big transition at the school she is used to.  I don't know if that will be something that she will take in stride, or if it will be hard.  She was in the same school with the same teacher for her entire elementary education.  I knew middle school would be a big adjustment, but as it turned out her one on one helper transitioned with her.  That made it so much smoother for her. 

Now she will be going back to the school she is used to but she won't know any of the teachers or the helpers.  I will have to train a whole new set of people.  Next year will be interesting. 

Thursday, June 24, 2010

Making Connections

When Haley makes associations it lets me know that she is thinking.  There is a lot going on up there.  Haley has had trouble with time, but I know she does make connections. 

Haley's birthday is around Independence Day.   For years she really didn't even know that we celebrate on the 4th of July.  We celebrate her birthday.  She is a really good sleeper and when she was younger she had an early bedtime.  We would put her to bed and she would sleep through the fireworks.  I don't know how she did it, it sounds like a war zone in our neighborhood.  Several neighbors get together and set off fireworks right in front of our house.  A couple of years ago we decided to let her stay up and celebrate the holiday with us.  She loved it. 

A few months later it was her Grandpa's birthday and we decided to call him on the phone and sing the Happy Birthday song to him.  That night she wouldn't go to bed.  She kept getting up and she was very agitated.  I didn't know what was wrong.  Finally she said "Boom. Bang."  It took me a minute to realize that she was associating a birthday with fireworks, not just her birthday.  She knew it was Grandpa's birthday and she thought that we should have fireworks for him too.

Two days before school was out Haley started to talk about swimming.  Haley likes to swim in the summer.  I looked out the window and our kiddie pool was in the yard.  We don't know how it got out there.  My husband didn't do it, I didn't do it, and Haley's Big Sis didn't do it.  The pool was in the girl's playhouse.  My husband went out and looked and came back and said that the playhouse door was closed and locked.  I don't know when she did it, but apparently she went out sometime without us knowing about it got out the pool and locked the door and came back in.  That is a mystery. 

The point is that she knew that school was ending, summer was beginning and it was time to swim.  Never mind that it was only about 50 degrees outside and raining.

Wednesday, June 23, 2010

Summer Haircut

Haley was awesome at her haircut appointment.  She sat perfectly still.  She was mesmerized by the process.  The stylist used a razor to cut it this time and I know how interesting that feels.  I was impressed.  I tried to take before pictures, but she wasn't cooperating and it really didn't show her hair very well.  She was a little more interested in posing afterwards.

This is the typical pose these days.

I asked her to turn so I could get a shot of the back.  The stylist cut a lot.  There were curls all over the floor.  Don't worry it will grow back.  And soon.

When we got home I asked her to pose for me again.  I got the same reaction so I was patient.  You have to be to take pictures of her.  If I ask her to smile she just says "smile" and she doesn't do it.  She is not an easy subject.

I guess I was done at this point.

Tuesday, June 22, 2010

Those Curls

Haley's hair is usually the first thing people notice about her.  They always say "Where did she get that curly hair?" and I always say "My Dad had curly hair like hers."  I don't know if my Dad appreciated his curly hair.  When I knew him he didn't have a lot of it, the top of his head was bald.  He kept his hair pretty short and he washed it several times a day to keep it under control.  Haley's hair is just like my Dad's was.  It is not the only thing she has in common with him.

Her hair has always been curly.  We could actually see her hair in the ultrasounds we had when I was pregnant.  The technician pointed out her hair, there was a lot of it and it was already curly.

Haley has perfect hair.  It's curly, but not kinky.  It's soft.  It doesn't take any effort to make it look good.  I spray it with water and comb it and then I fluff it with my fingers and when it drys it turns into the most beautiful mass of curls.  My Mom likes to play with her curls when she fixes her hair, but it really isn't necessary.  My husband just combs it straight back and sometimes uses a brush.  It looks better if he uses a comb, but Haley's hair is very forgiving.  It usually just obliges and turns out great.

I kept Haley's hair very short when she was young because I was afraid that it would get out of control if it got too long.  I love it short, it is easy to care for and so cute.  I decided a couple of years ago to see what would happen if we just let it grow long.  It never really looked any longer than shoulder length even though when it was wet I could stretch it down to her waist.  It was fun and it never got out of control.  I could put it up in pigtails and pony tails and I even french braided it a couple of times.  I always had to do something with the front like a pony on top or a headband.  She didn't have bangs.  Last year I had it all cut off again in an attempt to get her to quit nodding.

Cutting is not as easy as fixing it.  When Haley was little it was not easy to get her hair cut.  Haley will not sit back and let someone wash her hair, ever.  A few hairdressers tried that and it was a disaster.  Finally I just told them to spray her hair with water and go from there.  Now I just give her a bath prior to a hair appointment so that her hair is still wet when we get there.

Once I took her to get her hair cut and she had such a fit, she was screaming and crying.  The hair dresser had only done the right side of her head and then stopped and asked me if she should continue.  Are you kidding me?  Was I supposed to take her home with only one side of her hair cut?

Another hairdresser was so nervous.  I had to hold Haley's head still while she cut her hair, I had both of my hands on the side of her face by her chin.  When she was done I noticed that she had cut her own fingers trying to be so careful not to cut Haley.

I now take Haley to my stylist.  She does a great job.  Haley has grown up a lot, she knows that when she is done she will be pretty, so she does a very good job of sitting still.  She is getting a haircut today.  This is going to be her summer cut.  We are going very short, back to the style she had when she was little.  I am excited about it.  I will post pictures tomorrow.

Monday, June 21, 2010

Train Watching

Haley did go train watching with her Dad on Father's Day and he took some pictures of her while they were there.  She got to go to her new favorite train watching spot.  She calls it Tunnel.  They go under the tracks and go up a land bridge and watch the trains at eye level.  She likes it because she can be close, but not too close, and the engineers don't honk at her.


Haley brought along her horse Chip to help her watch the trains.

Friday, June 18, 2010

Happy Father's Day

We don't have anything planned for Father's Day.  Well, not that I know of anyway.  Haley's Dad always seems to have a plan.  He will probably do the one thing he always does on Sunday.  He takes Haley with him to "Train Watch."

I put that in quotes because it is something that is understood at our house, but when I explain it to outsiders they often give me a blank stare.  It is not something that everyone does, but there are those that do.  Haley and her Dad being two of them.

For the uninitiated Train Watching is exactly what is sounds like.  You go somewhere near tracks, you stop and you watch.  A train goes by.  You wait.  Another train goes by.  That's it.  Oh.  And Yes, I do mean freight trains.  The kind you see running along next to you on the highway.  Oh, and Amtrak. 

I wish I could see your face right now.

We also "Watch" steam engines, but that is another story.  That is fun and there are always hundreds of people waiting to see them go by.  It is kind of novel to see one of those bad boys barreling down the tracks blasting smoke and steam.  That is a spectacle.

This is just sitting by the tracks and waiting.  I don't get it, but I know my husband does.  He has friends that do.  Haley does.

Every Sunday morning I get up like it is a regular day, but after that everything changes.  On Sunday, I go to church.  I get up and get myself ready.  That right there is saying something.  I don't get Haley ready on Sunday.  This was never an agreement between myself and my husband, it has just developed organically.  I usually have to be at church early because I volunteer at my church.  I have many roles.  I also have a really difficult time saying no when it comes to my church.  I love them and they love me.  So I usually don't have time to get Haley ready, but also Haley is on Dad's schedule.

He usually doesn't have to get her up.  She has a very good internal clock and she is usually up and rarin' to go on Sunday.  She eats breakfast with Dad.  He gets her dressed, which usually means a train shirt and jeans.  He brushes her teeth and fixes her hair.  Then they leave.  We don't see them again until lunch time.

They don't always go to the same place, but apparently they have the same routine.  They stop somewhere and then Haley undoes her seat belt and climbs in back of the Yukon and sets up whatever toys she has brought and they wait. 

My husband has been doing this since he was young.  He has a scanner so that he knows where the trains are.  He knows which one to expect at what time.  He knows if they have an issue on route and will be late.  He can listen to the conversations between the engineers and the dispatchers.  He even can listen to the crews that are doing maintenance on the tracks.

I have tried to go Train Watching with him.  When we were dating it was fun.  It was a unique experience and I just wanted to spend time with him.  The same was true after we were married.  I saw it as a way to spend time together.  It didn't take long for the appeal to wear off for me.  My husband doesn't just go to the depot where the average person would expect to find a train, he goes out in the boonies.  He goes to places that will make for a good backdrop, because he also likes to take pictures of trains going by.  Those places are usually far from civilization, and when I say civilization I mean restrooms.  A couple of times of that was enough for me.

We did Train Watch as a family after Haley's Big Sis was born, but she seemed to have the same reaction to it that I did.  Then we had Haley.  Little did we know that she would get the fever. 

My daughter is a Rail Fan. 

She loves trains in any form that she can get them.  When she is with her Dad she loves to watch those big trains go by.  As long as she can stay in the back of the Yukon.

So, Honey I have the Yukon all ready to go, I took it to the car wash for you today.  Happy Father's Day.

Thursday, June 17, 2010


Haley is all about peace.  The symbol that is. 

For some reason the peace symbol resonates with her.  She has had an affinity for it for many years.  When she is shopping she is drawn to it like a magnet.  At first I didn't realize how pervasive it has become until I was folding her clothes one day and I noticed that t-shirt after t-shirt had the peace symbol on it in some fashion.

It has become quite the running joke in our house.  Well, especially between Haley's Big Sis and I.  If we see something with a peace symbol on it we know it is just a matter of time before Haley will notice it.  When we get catalogs in the mail, or the circulars in the paper we know that Haley will point out the peace symbols.

We recently got the new catalog for Pottery Barn Teen which has many things in it covered in peace symbols.  They call the line Berkeley.  When I saw it I immediately thought of Haley.  Her birthday is coming up and I don't have a present for her yet.  She has been giving me clues that she might like some new luggage, this is something she frequently points out in newspaper ads.

I don't know why she wants new luggage.  She used to have a small pullman that came with a matching backpack, fanny pack and sleeping bag that Grandma C gave her.  It became too small for our use when her legs got so long.  I have to fold her pants many times to get them to fit.  If we are packing for more than two days it gets way too full.  I donated the whole set recently.  We have been packing her clothes in my suitcase when we travel.  I guess she has decided she doesn't want to share with me.

The PB Teen catalog has bedding in the Berkeley motif as well, so I am thinking that would also make a fun gift.  She got a hold of the catalog the other day and noticed all of the peace symbols immediately.

As I am typing this the catalog is sitting on the table, she just walked by and pointed to the backpack on the back of the catalog and said "Peace."

Peace, Baby.

Wednesday, June 16, 2010


Haley had my camera.  She was taking pictures of her horses and dolls.  I caught her.  Then she wanted me to take the photos while she posed.

Tuesday, June 15, 2010


I am so excited!  I just learned about an app for the iPod touch or iPad that could allow Haley to "talk."  It is called Proloquo2go.  I have been looking at the blogs of other special needs families and they shared their experiences with the app.  They even have videos of their kids using the app and talking with it.  It is amazing.

I have to be honest here and confess that I am geeking out just a bit.  I mean the truth is that I want an iPad.  I think they look so cool.  I also have long held the opinion that Haley would really benefit from a touch screen.  I thought that long before she ever taught herself how to use a mouse.  When I saw the first commercials for the iPad I immediately thought that it would be perfect for her.

It's not like we are lacking in gadgets around here.  We have computers and laptops and iPods.  Haley's Big Sis has an iPod touch herself and she has quite a few apps on it.  I just think that this particular app could benefit us all.

Haley can say some words and she understands a lot more than she can express.  I know that in her head she is saying all kinds of things to us, but frequently it comes out as a series of grunts and sighs and hums that I can't even accurately represent with typed words.  They are words to her though, I am sure of it.  Imagine if she could choose words from the screen and create sentences and hit play and get her meaning across to us.  Just the thought of it brings tears to my eyes.

I looked a the videos that the other bloggers posted and then I went to the website for Proloquo2go and then I went to YouTube and there were more videos of kids using the app and actually having conversations with their parents.  It was truly inspirational.  Haley sat down next to me and watched a few of the videos, it was very interesting to her.  I showed her Dad the videos and he was dubious that she would actually use it to communicate.  He was afraid that she would just play with it.

I am not sure.  One of the blogs I read said that her son liked to stay in the section about his friends and that if allowed to he would stay in that section for a long time.  I can see Haley doing that if there was a section about horses or about trains, but I would hope that if I trained her to use it to communicate that she would see the benefit in that.  I know she gets excited when I actually understand what she is trying to say.  She gets the biggest grin on her face.

This is not the end of this.  I have more research to do, but I think this could be a really cool summer project.  It could be my way of extending the learning and the school experience into the summer.  I could ask her what she wanted to do, and actually get an answer. I am excited!

Monday, June 14, 2010


My weekend was better.  Big Sis had some medicine that finally put an end to the dizzy/headache and the sun was shining.  Haley and I and her Dad decided to go for a walk on Sunday.

We walked down by the river, which coincidentally is also by the railroad tracks, much to Haley's delight.  It was a beautiful day and there were a lot of other people that had the very same idea.  Haley got to see many dogs on our walk as well as boats and airplanes and trains.  She kept up with us very well too.

We walked past several restaurants on our walk.  Delicious smells were in the air.  Haley announced that she could smell a hamburger.  She decided she wanted a hamburger.  She tried to go in to the restaurant.  We told that we were on a walk, and that we would not be eating.  That didn't seem to deter her.  She tried to go into the next restaurant.

I told her that I was planning to make salmon burgers for dinner and that seemed to satisfy her for a while.

After our walk we stopped by the grocery store to get a few things.  She wanted to get a hamburger there.  I again explained to her that I would be cooking dinner tonight at home and that we would be having salmon burgers.

We got home and because I was not going to start cooking, even though she wanted me to (it was only 3:00) she decided to go upstairs and play on the computer.  After a while she wanted help with her computer game.  She was playing a Spirit Stallion of the Cimmaron game which is strategy game, you have to save a horse to move on to the next level.  Haley has played this game many times and her favorite part is toward the end of the game.  There are railroad tracks and a steam engine.  She likes to get to that point, but it takes time and skill and I usually have to help her get to there.  I told her that I didn't want to play her game and that I needed to get started on dinner.  She clapped her hands and said "Yay!  Hamburger!"

I went downstairs and started making my salmon burgers.  Pretty soon Haley came in to the kitchen and went to the refrigerator.  She got out the catsup, the mustard and the pickle relish and put them on the table.  I thought about explaining the difference between salmon burgers and hamburgers, but I didn't.  After she had done what she thought needed to be done she went back upstairs.

When dinner was ready I called her down.  The salmon burgers I make are delicious, and she liked them the last time I served them.  Sunday night Haley did want my salmon burgers.  I got quite a look when she sat down and took a look at her plate.  Haley doesn't like to pick up her food.   She is happier using a fork or a spoon, so I usually help her eat sandwiches and tacos and burgers.  I held up the burger so she could take a bite.  I got another look.  Then she said "Hamburger!" 

She was not happy with me.

Friday, June 11, 2010

It's Just Too Much For Me

I am feeling it.  I don't know how much more I can take.  When my kids are sick it affects me.  I don't feel like doing anything.  I take on their suffering.   I may not feel it like they do, but I don't feel right.  I don't feel good.  I feel bad.

We still don't know what is wrong with Haley's Big Sis.  She is dizzy.  She has been for almost two months.  She has missed so much school.  I am trying to stay on top of her homework, but I am worried.  I think we are a week behind right now, but not all of her teachers have gotten back to me.  I can check her grades online, but not all of her teachers are up to date on the website.  I am heartsick that my child is suffering, that her grades are suffering.

I keep taking her to doctors.  We keep trying the medications they prescribe.  Nothing works.  I am just sick.

On top of that Haley has started nodding again.  I don't know what this is.  Haley has done it in the past.  It starts out innocently enough. It almost seems like she is playing with her hair.  Like she needs a haircut.  The first time it was like she wanted to feel her hair on the back of her neck.  Thinking that was it I took her to get her hair cut.  It was pretty long back then and I had it all cut off. 

Now it seems like she can feel her curls.  They bounce around on her head when she nods.  It seems at first like it might be fun.  It starts out as a subtle thing, but then it gets violent. I am afraid that she will hurt herself.  It can't be good for a persons neck to jerk it around like she does. It looks like it would hurt.

Last time she did this for almost four months, until I just lost it.  I told to her to stop.  I demanded that she stop.  I thought at the time that I was being irrational, this is something that had been going on for months how could a few words now make a difference. They seemed to though.  She did stop, not immediately though.  It took a couple of weeks, but it was such a relief.

So now I am on edge.  Seeing Haley out of the corner of my eye nodding and twitching like she does is making it worse. 

I don't know when it really started this time, but it was bad last night.  During dinner she did it a lot.  She did it while she was taking a bite, that doesn't seem to me to be something she is doing for fun.  Now I am worried about her too.

This morning when she was eating her cereal I saw her do it again.  I asked her to stop.  She put her chin to her chest and then she grabbed her head with her hands and pushed it back.  I almost lost it.  I don't know what she is thinking.  I don't know if it bothers her as much as it bothers me.

I don't know how much more I can take.

Thursday, June 10, 2010

Our Yearly Reminder

It's that time of year again.  The time of year when the case manager from the Department of Developmental Disabilities comes to the house to determine the level of support that Haley requires.

After a whole year of celebrating little milestones and thinking that Haley is doing so much better I get an official reminder of how much assistance she really needs.

Haley is evaluated on her daily activities and the level of assistance she requires along with the family supports that we need.  As the case manager asks me the questions it becomes painfully obvious to me that Haley really does require a lot of assistance.  This is our life.  I don't question it on a regular basis, I just live it.  I have been thinking about what she needs a lot more lately (now that I have started this blog) but in general I forget how much she needs.

There are questions about her self care like; Can she dress herself?  No.  Can she bathe herself and shampoo her hair?  No.  Can she trim her fingernails and toenails?  No.  She isn't toilet trained, she relies on her family to change her.  She can feed herself, but does sometimes require help.  She moves around her home independently, but she does require assistance in new situations.  We understand what she wants (for the most part) but others would struggle to understand her.  She know that she needs money to go to the mall with her class, but she doesn't understand anything about money.  She can't tell us if she is in pain.  I don't let her go outside by herself because she would probably just wander away and not know how to come back.

The one that always affects me the most is the question about safety.  Could she identify and respond safely to emergencies.  I have to say no, I don't think she could.  I don't think about it on a daily basis, but if something were to happen to one of us or to the house I don't think she would know what to do.  I am not even sure that she would understand enough for us to teach her what to do.  I know they have safety drills in school, but I don't know if they really mean anything to her.

The case manager asked if she had ever indicated to us that she needed assistance.  I told her that the only incident I could recall was when the computer crashed and she stood at the top of the stairs and said "Help."  We were encouraged by that, but in comparison it is really nothing.  I started wondering if we should have safety drills here at home.  What if I pretended to pass out with Haley in the room with me, I wonder if she would find her Dad or her sister and ask for their help.  It really makes me wonder.

Haley is in good health.  I am thankful for that every day.  The case manager went down a list of medical issues and asked me to indicate if Haley needed support with any of them.  It was quite a list.  I was very thankful that we don't have medical problems to deal with, some parents do, and I feel for them.

The last series of questions have to do with me.  They want to know if there are other care givers available.  Well, there is my husband and my other daughter.  On occasion I have asked one of the teenagers in the neighborhood to watch her for a couple of hours so that her Dad and I could do something with her Big Sis.  We don't have family in the area, but if her Dad and I want to go somewhere for a couple of days we have asked her grandparents to come and stay with the girls or we have taken the girls to their house.  They want to know if raising our daughter causes us undo stress.  A couple of years ago when Haley seemed out of control that was starting to be an issue, but any more everything seems to be fine.  Our family is happy and stable.

So every year at this time we are reminded (officially) of how difficult our life is, but we are also reminded of how truly blessed we are as well.

Wednesday, June 9, 2010

What I Am Learning to Teach

Everyday occurrences become lessons.  I feel like I spend a lot of time teaching Haley.  Mothers of toddlers are used to this.  I am the mother of a teenager and a pre-teen.  I am still teaching them both, but differently.  I teach one of them that if she doesn't call when she says she will or doesn't answer her cell phone when I call, there will be consequences.  I teach the other one to climb in and out of the bathtub.

Last night was bath night.  Haley has a bath on Tuesday, Thursday and Sunday nights regularly unless I have something unexpected come up.  Her Dad doesn't give her a bath anymore, it is my job.  This has been our routine for several years and it has become routine.  Something happened recently though that made me rethink our habits.

Haley's Big Sis and I had a Johnny Depp movie marathon.  We watched several of his movies that I had seen and a few that I hadn't.  One of the movies I hadn't seen was What's Eating Gilbert Grape.  The movie was disturbing in many ways, but there was one scene that has haunted me ever since.  I couldn't sleep at all the night that we watched it.

SPOILER ALERT - I have to talk about a key part of the movie to explain what was so disturbing to me, but I won't give away the ending.

Leonardo DiCaprio did an amazing job of portraying Arnie, a young man with mental disabilities.  It was never really explained what exactly his disabilities were but he was very convincing and very much like Haley.  It fell to his big brother Gilbert played by Johnny Depp to take care of him.  He did a pretty good job considering he was only a kid himself, but Arnie was occasionally left on his own to run the streets of Endora, Iowa.  His favorite pastime was climbing the little town's water tower.

The scene that haunts me had to do with Arnie's bath.  Gilbert had the responsibility of giving Arnie his bath, but he wanted to see his girlfriend so he told Arnie where his towel and his robe were and he left.  Now being a Mom to a child with disabilities it didn't take me too long to see how this was going to go.  It was still really upsetting to see that after being out all night, Gilbert returned home and fell asleep and then he awoke in the morning to find Arnie still sitting in the bathtub, shivering.

It really hit home for me.  I would never leave Haley in that situation.  I never even leave the room when she is in the tub, but I can imagine that if I wasn't there to tell her to get out or to help her get out that she would also sit in the water until it was cold.

So the next time Haley took a bath I began to teach her how to get in the tub by herself and how to get out by herself.  I have also started teaching her to pour the water on her hair.  I try to get her to feel the top of her head so that she knows if all of her hair is wet or not. 

These little things that come so easy to us, that we take for granted, these are the things that Haley needs to learn.  These are the things that I have to teach her.

Tuesday, June 8, 2010

Happy Feet

Last night while I was making dinner something very odd was happening in the family room.  There was a lot of giggling.  It was distracting.

Monday, June 7, 2010

The Day Everything Changed

We are so lucky.  Haley is a very healthy girl.  She is hardly ever sick.  I think in the last (almost) thirteen years she has only had two stomach viruses that I can remember.  She gets the sniffles occasionally, but they don't last long.  The rest of us trade cold germs back and forth pretty regularly but they seem to miss her.

I am thinking about Haley's health today because her Big Sis has not been doing so well.  Big Sis has missed a lot of school because she is dizzy.  She has been to the doctor and had many tests.  We don't know what is wrong even though she can tell us how she is feeling.  She can describe her symptoms and put qualifiers on them, but even then we still don't know why she is dizzy.  It is very frustrating. 

I can think of something that would be even more frustrating.  Not knowing what she was feeling.  If she was suffering and she couldn't tell me. I know that would be worse because that is the problem we have with Haley.

There was a time when we weren't feeling so lucky.  Haley didn't feel good.  I know that now, but back then I didn't know what was going on.  Haley doesn't know how to tell me what she is feeling. There have been times when I could tell that she didn't feel well, but no matter what kind of question I asked her I couldn't get her to tell me where the problem was.

Haley spent a large portion of her young life constipated.  I had to keep her home from school because she couldn't sit down. I couldn't bear putting her on that bus knowing that when she got to school she would be miserable. She would scream and cry when she needed to go. It could last for days. She would hide in her room and try. She would lean over tables. It was torture.  I had talked to someone that I knew with a special needs child and she suggested mineral oil.  I tried that.  It didn't really help and it didn't seem like a very good long term solution to me.

Haley was angry a lot.  She had a short fuse.  If things weren't going her way she would have a fit.  She had what I call the Meltdown regularly.  The simplest thing would set her off and the bad mood would last for hours.  She started attacking me.  She would come at me and try to hurt me.  She either hit me or tried to bite me.  My husband would pull her off of me and take her to another room and try to calm her down.  She would break away from him and come back at me.

I was beside myself with worry, she was getting big and I didn't know how to defend myself without causing her harm.  I talked to our doctor, her teachers and my cousin who also has special needs children.  I started reading a lot of things on the Internet, I searched everything I could think of about behavior modification.  I even ordered a CD of music that was supposed to calm her down.

During my searches I ran across a lot of information about how diet can affect kids like Haley.  I read about casein and gluten free diets.  It made sense to me.  It didn't seem that difficult to try so I went to Whole Foods and bought dairy free milk, pudding, yogurt and ice cream.  We were ready to go. 

Haley went dairy free on January 1st 2008. 

I was amazed that she took to it immediately.  She actually wanted the new things in the refrigerator and didn't go for the old things at all.  Within a week she was a different person.  She was no longer constipated and she was no longer mad at the world and at me.  It was like a miracle.

My baby had been suffering and  she couldn't tell me what was wrong.  She didn't know how to tell me that she was in constant pain. When I was a little girl I remember telling my Mom that my stomach hurt, she didn't know how to help me, but at least I could tell her.  Haley didn't know how to tell me what she was feeling and it made her mad that I didn't understand. 

Sometimes it feels like I am all she has.  I know her Dad and sister and grandparents love her, but I am the one that she counts on and I wasn't getting it.  I am sure she doesn't realize that I figured out what was wrong and I fixed it, but it doesn't matter to me.  All I care about is that I did.

I decided that if it worked so well for her that I would give it a try myself. The week after I started Haley on her new diet I went onto it as well. The stomach aches I had been plagued with my entire life stopped. They just stopped. I did try a little milk a week later and sure enough that was what did it.

It has been two and half years. Haley's behavior problems are gone. She is almost always happy and so am I.

Friday, June 4, 2010

The Next Best Thing

Last night Haley was filling the air in our house with laughter.  She was having a marvelous time.  I was upstairs and I could hear "WhoooHoooYay!" followed by riotous mirth.  I had to check it out.

She was sitting on the couch with the laptop perched on a pillow on her lap.  When I walked in and took a look over her shoulder she was watching videos of people riding amusement park rides on YouTube.  She was enjoying it as much as if she was on the rides herself. 

For the most part that is probably the closest she will ever get to riding on some of those rides.

The problem with amusement park rides is that Haley has either been too small to ride or too big to ride the rides that I feel are at her developmental level.  Now she is tall enough to ride the rides that have height restrictions, but I am not comfortable putting her on them.  It helps (me) that those rides seem to scare her. 

One of our favorite amusements parks is Silverwood in Northern Idaho.  Our family has a close attachment to it.  When it was first under construction my husband and I were dating.  We were driving by the site one day and we had to pull over to see what was going on.  We could see that it was under construction but the buildings looked like they belonged in the early 1900's.  From those humble beginnings the park has become a really great park.  It is like a giant country carnival and it has one of the best steam engine rides we have ever been on.

I like that at Silverwood the kiddie rides are fun and that parents can ride with their kids.  Haley and her Big Sis can ride them together.  One of our favorites is the Log Flume ride.  Last summer we decided that Haley was ready to try it.  Haley doesn't normally do well in lines anyway, but in this line she could see what was coming up and she seemed to get more and more nervous the closer we got. She saw all of the wet people getting off of the ride and I don't think it looked that fun to her. 

I just kept reassuring her that it would be fun and that I would be with her.  She backed into me a couple of times.  It was a little tricky getting her into the log but we did and she seemed to enjoy it until we got to the top of the big drop.  I was squeezing her pretty tight with my legs and I had my hands over her hands on the bar handles.  I could feel her shaking.  We were all yelling by the time we got to the bottom and when we stopped she said "Fun!"  When we got off the ride and asked her if she wanted to go again she said "No."

We took the girls to Enchanted Forest on Mother's Day this year.  That park also has a log flume ride.  We rode it, but I still don't think she wanted to.  She said "Fun!" at the end of that one too, but just like last time she didn't want to go again.  We also wanted to ride a roller coaster at that park, but she decided to stay with her Grandma and watch.

It doesn't bother me that she doesn't want to ride those big rides.  My Mommy instincts want to keep her on the ground.  I am glad that she gets such a kick out of the videos of rides on YouTube,  I think that they are close enough to the real thing for both of us.

Thursday, June 3, 2010

Never Say You're Sorry

People usually call them Pet Peeves, things that bother them on a regular basis.  Haley has several.  For example she hates it when I get water on her shirt when I am fixing her hair in the morning.  She says "Dry" and we have to use the hair dryer to dry the tiny drop away. 

She doesn't like things out of place.  While I am trying to get her ready in the morning she is busy trying to get me to put away the toothpaste, hairbrush and other sundries that her sister has left on the counter.  Big Sis is not as concerned about being neat.

When she works on the computer the desk has to be clean.  If I have left papers on the desk she will push them onto the floor, this is especially annoying to me around tax time.  If I can't find my cell phone I have learned that I should check my desk drawer because she started stashing it in there when I left it on top of the desk.

In my post Nobody's Perfect I mentioned her annoyance with any kind of spill, even those so small that we don't usually see them.  This happens quite often when she is feeding herself.  She will spill a drop of milk while eating her cereal or a grain of rice will escape her plate and land on the table.  This drives her up a wall.  It must be cleaned immediately.  Life as we know it comes to a complete stop.  This is true even if the spill is not her fault. 

I still feed her occasionally.  Haley eats too quickly.  She will continue to shovel food into her mouth regardless of how much is already in there and she rarely chews her food completely.  I have on many occasions had to retrieve things out of her mouth that she was not able to swallow because she didn't chew them properly.  I sometimes resort to feeding her just to slow down the process. 

Soup is baffling to her, I usually have to feed her that.

Haley is a carnivore, she would be happy with a plate full of nothing but meat.  I usually have to feed her bites of vegetables in between her bites of meat not only for her balanced nutrition but also so that she can give her poor throat a break.  I don't know why she does this to herself, but she always has. 

I am right handed and I usually don't have a problem feeding her if I do it with my right hand.  Occasionally I try to feed her with my left hand (I don't know why) and that is usually when the problems occur.  She gets really mad at me if food misses her mouth, falls off the fork, lands on her shirt or her pants or finds its way onto the table or floor. 

I apologize "Oops, I am sorry Haley, see even Mommy makes mistakes sometimes."  It doesn't help, in fact it seems to make her madder.  Haley doesn't want to hear it.  If I say "I'm sorry."  She yells "SORRY!" in a tone of voice that cannot be mistaken.

She doesn't like criticism either or more to the point she doesn't like to be contradicted.  If we tell her "No" she also yells back at us "NO!"  Apparently she doesn't like the word no.  We say she doesn't like being told.

Disciplining her is tough.  I don't condone corporal punishment in general.  Spanking never really worked on Haley's Big Sis and it really doesn't work on Haley.  I am not proud of the times that I have resorted to spanking her, but I can tell you that I remember every one of them and I can count them on just one hand.  When I spanked Haley it was out of frustration, usually for a behavior that was dangerous and had to be stopped or had gone too far.  I knew it was a mistake the moment I did it, but there was no going back or taking it back. 

When I spanked Haley she would then spank herself.  It was heartbreaking.  She showed no mercy.  One little swat on the behind from me and she would start smacking herself over and over, and not gently either.  I usually had to hold her hands still and try to calm her.  I then, being me, would apologize.  I am sure you can tell where this is going.  As soon as I would say "Haley I am so sorry."  She would yell "SORRY" and it would continue to escalate. 

It is extremely hard for me not to say "I'm sorry." it just naturally rolls off of my tongue and I make mistakes frequently.

Just typing these things brings them back vividly.  This hasn't happened in a long time, but the times that it did happen were really traumatic for me.  I hope they weren't as traumatic for her.

Wednesday, June 2, 2010

My Little Velociraptor

I am proud of Haley when she learns something new.  It is a great achievement for her, things don't come as easily for her as they do for other children. We rejoice over any advancements Haley makes, but sometimes there are things we don't want her to learn.

There are times that I want to keep her in the dark about certain things.  Take for example the child locks we still have on several cabinets around the house.  We really don't want her to get in to those cabinets.  We have to be careful when we open them so that she doesn't see how it is done.  I have taken to calling her my little Velociraptor.  If you have seen Jurassic Park you know what I am talking about.  They learn.  It can be quite scary.

I was never excited for her to learn how to unlock and open any of the doors in our house, especially those that lead to the great outdoors.  When Haley was a baby we would hold her up to the garage door opener and ask her to push the glowing red button.  Eventually she got tall enough to reach it. Even now we like to let her open and close the garage door for us because it makes her feel useful (I am guessing) and because we usually have our hands full.  Back when she was five or six she also learned how to open the door to the garage from the house, which I really wasn't aware of until it was too late. 

The doorbell rang once when I was upstairs.  I came down and opened the door to find Haley standing there with our neighbor's son from down the street.  He told me he saw Haley wandering down by his house and he didn't see me so he thought he should bring her back home.  You can't begin to imagine how I lavished praise onto that kid.  After he left I sat down and balled my brains out.  We almost got to the point of putting an alarm on all of the doors and maybe we should have, but instead I just became more vigilant and she hasn't done it again.

This last weekend was a three day weekend which meant that the four of us were together in the house for three days.  I should say the five of us because Shadow was also in the house - he doesn't like to go outside.  He was being his usual curmudgeon self though and not sitting still on the girl's laps.  At one point Big Sis decided he was going outside whether he liked it or not.  He hissed at her the entire time but she eventually got him out the door.  We always lock the doors even when we are home so she locked the door after him.  A little while later I came around the corner and there he was sitting in the entryway looking all innocent.  I swear if he could talk he would have said "Haley did it."  So yeah, Haley can unlock the front door and open it.  Oh joy.

Haley likes to let Shadow out of "his room" and he likes to wander the house looking for places to spray.  It puts me over the edge so my husband decided to put a lock on the door to the laundry room on Saturday.  That put my mind at ease. 

I soon learned that it was a false sense of security that I was enjoying.  Come Monday morning Haley had figured out how to unlock that door.  I quizzed the rest of the family and no one fesses up to teaching her how to unlock it or to even to letting her see how over their shoulders.  She did it all on her own. 

In case you are wondering I didn't say "Good Job!"

Tuesday, June 1, 2010

My Little Helper

I have been a bit distracted lately.  I have a lot on my mind.  I really love that when I get like this I have someone around that helps me get through it.  Haley was on the ball this morning.

When it came time for me to make Haley's lunch she started pulling things out of the cupboard and the refrigerator, I had to ask her a few questions but for the most part she basically told me what to pack in her lunch. When I was done making her lunch she anticipated my next move which was to fill out her paper.

Every day before school I fill out a form that lets Haley's teacher and aide know what she has done the night or weekend before.  I explained this paper in the post A little window into her school day.  I got the paper out and she started telling me what to write.  She said "Trains. Dad."  Which meant that she went train watching with Dad on Sunday.  Then she said "Depot." which meant that she and Dad went to Home Depot on Saturday.  She loves going to Home Depot. 

I started to write the movies that she had watched and she pointed to the right section and said "Future. El Dorado."  Which meant that she watched Back to the Future and The Road to El Dorado.  For the record we were on our seventh day of watching Back to The Future.  She usually chooses the third film because it has a train and horses in it, but since it was a three day weekend we had convinced her to watch the first and the second films a couple of times as well.  By Monday Big Sis had to intervene and Haley ended up choosing some new movies.

At this point I said "What did we have for dinner last night?  I cooked it so I should remember it." I often talk to myself.  Haley was standing there though so I guess she assumed I was talking to her.  She said "Chicken."  Oh that's right it was chicken.  Really I don't know what I would have done without her. 

I picked up her lunch and her paper and headed for the closet to get her backpack and she came up behind me with her Friday folder.  This is a folder that the school sends home with her every Friday with all of her papers from the week and any correspondence from the school that they need  us to have.  We are supposed to send the folder back on Monday.  I am here to tell you that that would not have happened today if Haley hadn't brought it to me.

I started to wonder if maybe she should stay home and help me with the rest of my day, but in all honesty I think what I really needed was some quiet time to myself.  After all it was a three day weekend.


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