Haley's iPod

Haley loves music.  She likes to listen to music and she likes to sing along.  Haley's favorite songs are from her favorite shows.  She has CD's of the soundtracks for The Road to El Dorado and Spirit Stallion of the Cimmaron as well as three Disney CD's that are compilations of songs from Disney shows way back to Snow White and the Seven Dwarfs and all the way up to The Lion King.

I think Haley likes these songs for two reasons.  First they are great songs and second they remind her of her favorite shows.  The soundtracks contain songs that happen underneath the action in her movies not just the songs that the characters sing.  She gets excited when those songs come on because she is remembering the action.

Haley likes to listen to her CD's in the car when we go on long trips. We live quite a ways away from both sides of our family so when we visit them we can have anywhere from a three hour trip to a trip that lasts two days.  My husband and I have also been able to slip in a couple of Elton John CD's on those long trips so we don't go crazy.  She is used to his voice.

We had a stereo system in the house and I was listening to a CD once when Haley got home from school.  She put two and two together and brought me her CD to listen to in the house.  She loved it.  She also had a CD of the sounds of they Daylight which I think she and her dad listened to really loud when I wasn't home.

I was turned on to the concept of the iPod a couple of years ago and I really love it.  I have two myself, one for walking and one that I can put on portable speakers.  We remodeled the first floor last year and I decided that we didn't need that great big stereo system because I could just listen to my iPod on the speakers, but that left Haley out.

So for Haley's birthday last year I decided that it would be fun for her to have her music on an iPod.  I thought it would be a way for her to have her music with her whenever she wanted instead of just when we were on long trips.  I got a shuffle for her and a little speaker that attaches to it because I didn't want to get her ear buds. 

She was so amazed when she opened that present. She didn't understand what I had given her until I turned it on.

We are still working on not holding up to her ear.  I keep it pretty quiet, but this was her first reaction.

Look at that face, she was ecstatic.

I want...

There was a time when Haley couldn't put two words together.  It wasn't that long ago.   Haley and I don't always need words.  I can usually understand what she wants.  She brings me things that she wants help with like snacks and drinks and videos.  I have taught her to use her words though and I make her use them.

Once my brother told me that he got upset when his daughter said "I want (that.)"  I don't really remember what it was that she wanted or how she had said it but I remember my reaction to his attitude.  I told him that I would be so grateful if Haley said "I want" anything.  That was back when the sounds we heard from Haley really didn't mean anything to us.  I think they meant something to her though.  Haley has always seemed very intelligent to me.  She seems to understand a lot more than she can communicate.  Words just don't come easily to her.  The private speech therapist that we used to take her to said she had Apraxia of speech.

When Haley brings me something like the Kool-Aid pitcher I make her "use her words."  I usually just give her a look that I reserve for the situation, but if that doesn't work I say "What do you say?"  On a good day she will then say "I want Kool-Aid please."  (imagine this said slowly pausing after each word)  She has done this a couple of times without my prompting but usually I have to get her started.  Sometimes I say "I" and then she can start from there.  Sometimes I have to model the whole question for her word by word.  I know an English teacher would not call it a question, they would call it a statement, but it works for me.  At least she is starting to put words together.

We have always been polite in our house.  We are polite to each other and to our girls.  I thought that if I wanted them to use words like Please and Thank You that they needed to hear them from me.  Haley uses please really pretty well.  I always make her say it before I do something for her.  Thank You is a little harder.  I always say Thank You if she hands me something or does something that I ask her to.  Usually after I say it she says it back to me.  If I say Your Welcome then she says Your Welcome.

I revel in the times that Haley corrects herself and when she puts words together on her own.  This morning when the bus arrived Big Sis said "Bye Haley."  Haley said "Bye." and then after a beat she said "Bye echel" (which is my rendition of how she says her sisters name.)  It was great, not only did she correct herself but she made the connection to her sister.  She is thinking, not just repeating.  It made my day.

Little Brother

We call our cat Shadow Haley and her big sister's "Little Brother."  He is actually an it, but it works. 

Shadow came in to our lives when Haley was a baby.  He was rescued by our day care provider's youngest son.  My husband and I had cats before the girls were born and we had really decided not to have any more.  He was a little shocked when I picked him up from work one day after I had picked the girls up from day care and he got in the car, turned to say "Hi" to the girls and Big Sis was holding a small black kitten.  He has said that if the kitten could be held by a toddler in a moving car it was a good sign that it would be a good cat.  It was supposed to be a trial run over a weekend, but you know how those things go.  Twelve years later he is still here.

Shadow was fun when he was a kitten.  He got his name from following Big Sis everywhere she went, he was her shadow.  He was an inside kitty.  We loved it when he would come around the corner and "talk" to us.  Everything changed when a neighbor moved in next door with a big yellow lab.  Shadow felt threatened I guess and the bad behavior started.  He sprayed and he became aggressive.  He would lay in wait for Big Sis and attack her, actually leap on her back and bite her.  It didn't take long for me to say enough is enough and kick him to the curb.  Then he became an outside kitty.

For a long time Shadow would come in and spend the night in the laundry room and then go out during the day.  For the last several years it has been Haley's job to make sure he comes in and gets fed at night.  She also made sure that we let him out in the morning.  It was a nice arrangement until he got into a fight with a neighbor dog who "cleaned his clock" as they say.  Shadow will not go outside anymore.  Haley still seems to be in the "let the cat out" mode, unfortunately.  She doesn't open the front door and let him out, but she does let him out of the laundry room.  This is something that I cannot tolerate, he still sprays.  It is a constant fight around here.

Haley and Shadow have a special relationship.  Even during the time that Shadow was attacking Big Sis he would not attack Haley.  Haley was able to use Shadow as a pillow and he didn't act like he cared.  He does have his limits though.  If we pet him too much or brush him too much he will bite us.  He has only bit Haley once, that I am aware of.  I think she learned her lesson and when he starts growling or hissing she knows to back off.

Haley likes to have Shadow sit on her lap.  She will sit on the couch and ask to be covered with a blanket and then she says "Shadow lap."  If he is in a good mood he will knead her tummy and purr and sit with her for a while.  Sometimes he steps off as soon as you put him down. 

Haley says "Shadow lap" again and we try it once more, sometimes we wear him down after several tries and sometimes he gets unceremoniously marched back to "his room."  Haley especially loves to have a Shadow Lap before she goes to school.  Shadow usually doesn't mind that too much because it rarely lasts very long. 

He is becoming quite a curmudgeon in his "old age."

I am a wimp

I find that my focus on any given day is to keep Haley happy.  I don't mean giving her everything she wants and following her every whim.  I mean making an effort to keep her from being unhappy.  I am a wimp.  I can't stand it when she gets out of control, when things don't go her way.  I try to get her to calm down, to go back to that happy state.  Sometimes I just can't.  My husband gets frustrated with me.  He tells me to ignore her, to just walk away.  That is really hard to do.   Sometimes it works but it can take hours.  My preference is to not let it happen in the first place.

That is probably why I haven't actually said to Haley "No, we are not going to Grandma and Grandpa's house."

I had a meeting last night so I wasn't home for a couple of hours.  When I got home I noticed some subtle differences from when I left.  Haley's pillow was on the floor by the back door that leads out to the garage.  Her purse was packed and sitting at the top of the stairs.  There was a pile of magazines under it.  There was a small pile of plastic horses sitting beside it.

I was sitting on the couch a little while later and Haley came in to the living room with a framed picture of her grandparents.  She brought it to me and held it out so that it was facing me.  She didn't say anything.  I said "Who's that?" and she said "Grandpa. Coy. Judy."  I smiled and nodded.  Yep that's them.  That was about it.

Later on Haley started talking about her new Daylight t-shirt and her new 700 t-shirt that she got on National Train Day.  She said "Daylight shirt, Grandpa."  OK.  I know my daughter.  I am just playing dumb.  She wants Grandpa to see her new shirts.  She wants to share her experiences with him.  I wish she could tell him everything that she wants him to know, because I can tell that she really wants to.  She knows that he will get it, she knows that these things are as important to him as they are to her.

My husband told me that while I was gone at my meeting he and Haley were in the bedroom upstairs that we have converted in to an office.  They were both in there playing on the computers.  He said he went downstairs several times and that every time he went down the stairs she would get up and look over the railing.  When he would come back up she would go back in to the room and sit back down.

This morning when I was getting her ready for school she said "Heather. Hi. How are you?"  Heather is the cow that lives behind her grandparent's house.  She likes to feed her.  She said "Leaves. Corn. Yum." and made a smacking noise with her tongue.

So Haley really wants to go to Grandma and Grandpa's house and I can't bring myself to tell her that we don't have plans to go.  I am a wimp.

Good Job

When Haley does what I ask her or says something correctly I usually say "Good Job!"  She has heard that phrase a lot in her life.  I believe in positive reinforcement.  There are times that she doesn't follow my instructions, she can be a bit stubborn, but I usually try to turn things around so that they are positive.

Occasionally Haley will take it upon herself to do something.   She likes lollipops.  We always ask her to throw away the stick when she is done with one.  Once I heard her in the kitchen say "Good Job!"  No one was around her.  She had thrown the stick away all on her own and then had said "Good Job!" for herself.

This morning my husband asked her to sign a birthday card for her Grandma.  After he walked away she said "Birthday. Grandma."  I said "Yes, it is Grandma's Birthday."  She then sang the birthday song for her Grandma.  I wish I had known she was going to do it so that I could have recorded it.  I have heard her sing the song before, but we recently celebrated Big Sis's birthday and my birthday and she didn't sing for either of us.

I had been out of town for the weekend and I hadn't put my suitcase away.  She came in to my bathroom this morning and saw it sitting on the floor.  She said "Case."  I told her that I hadn't had a chance to put it away yet and I would be doing that pretty soon.

Then later on when I was getting her lunch ready she started stacking her videos.  She took all of the videos off of the shelf and stacked them on the floor.  She got them all lined up and said "Good Job."  I really didn't know what she was doing.  After she left for school I thought about it.  I am guessing that she was tying the birthday card together with my luggage and guessing that we would be heading out for a visit soon, so she was getting her videos ready.

I have put away my luggage, and all other remnants of my trip.  I have picked up her videos and put them away.  She didn't say anything when she got home from school.  Hopefully she won't be too disappointed.

Nobody's Perfect

I am a perfectionist.  It is like a curse.  I want everything to go just right, but of course it doesn't.  It can be frustrating, but I am aware that nobody is perfect. It is obviously very frustrating for Haley too. 

My daughter has difficulty with her fingers sometimes.  She has had occupational therapy since she was very small.  They tried to teach her to use her fingers.  They tried to get her to write, to cut with scissors, to stack small blocks.  The thing is that she knows how things are supposed to be and she knows that she can't do it just right.  My daughter is a perfectionist with an imperfect body.

She gets very upset when she spills food or drinks.  I don't mean a big splattered mess, I mean a tiny drop on the table.  It makes her very cranky and life cannot continue until it is cleaned up.  There was a time when she would just whine and cry until I did it, but it has been nice lately that she will get a napkin and dab it up herself.  She still grunts and fusses, but she doesn't expect me to do it anymore.  Well on a good day anyway.

I have been trying to teach her to dress herself lately.  It is something that she has never had any interest in.  She does take her jackets off and occasionally she will put one on.  She learned how to do that in school.  I love it when she comes down the stairs with a jacket or sweater on that I did not put on her.

We are starting with her underwear.  She wears pull-ups because she has not been fully potty trained yet (subject for another day) but at school they keep her in underwear and take her quite often.  I dress her in the morning in pull-ups because she has a fairly long bus ride.  We put underwear over them so that they can remove the pull-ups at school.  We get the kind with Velcro on the sides.  She does really well with the underwear, but she has difficulty maneuvering her long legs and those unruly toes.  She gets frustrated.  She sometimes tries to give up, but I don't let her.  She grunts and stops.  It takes all of my will not to just reach over and help her, but instead I just keep encouraging her calmly.

So that is probably part of the reason that she still doesn't dress herself.  If it is not going well or right I take over and do it myself.  Maybe that is the reason that she doesn't do a lot of things on her own.  I am a perfectionist.

The Short Bus

I have heard the jokes.  I just ignore them.  I am sure the people who told them weren't thinking.  I didn't see an advantage to making them feel bad.  They really don't understand.

The short bus is awesome!

Haley has been riding the short bus since 2001.  I was so grateful that the bus would be coming to our house to pick her up, taking her to school and then bringing her back to our house, not only because it would be convenient but because it would be safe. 

I did not like the idea of my baby getting on a great big bus full of great big kids.  Kids that did not understand or appreciate her.  The short bus has been a blessing.

Haley began preschool when she was two, but I always drove her.  I quit my full time job as an architect in 2000 and that was the year that big sister went off to morning kindergarten.  In 2001 both of my babies got on busses and headed off to full day school.  I was not ready for that.  I was a blubbering idiot most of the day.

Thinking back about the short bus I couldn't resist a walk down memory lane.  I have pictures of the first day of school for every year except 2003, we went on a cruise that year that coincided with the first week of school and I forgot to ask her grandparents to take a picture.

This is Haley getting on that BIG little bus for the first time.

This broke my heart.  I was glad that she was safely secured, she would have gotten up if she hadn't been, but my mommy mind was more worried that something would happen to the driver and she couldn't get out.

Haley has had some great bus drivers.  The first couple of years they would kind of scare me by sending out a driver to pick her up the first couple of days and then switch them.  Apparently the drivers get to choose their routes based on seniority.  Usually by the second week of school we would have her regular driver.

Depending on the driver they would strap her in or I would.  She has started securing her own seat belt this year.  She also undoes her seat belt and gets up this year too.  I usually watch out the window for the bus, but sometimes it is early or I am engrossed in something and I forget.  The bus driver lets Haley get off the bus and ring the doorbell on those occasions.  She loves that.

Haley's bus drivers have always loved her.  She loves to ride the bus.  She is never a problem.  She is quiet and sweet.  She does sit by herself though.  They have only put someone next to her once.  I don't know what happened but it didn't last a day.

A couple of years ago Haley had a bus driver that let the kids bring CD's onto the bus to listen to. He let them take turns. Haley loved that. She liked to bring her soundtrack CD's from The Road to El Dorado and Spirit Stallion of the Cimmaron.

Haley got on the bus this year with her CD in her hand. The bus driver just looked at me quizzically. I told her that her last bus driver let her listen to it and she agreed that it would be OK.  I actually prefer it.  If that CD wasn't in they would be listening to the radio.

This year Haley's bus driver really enjoys her. She loves her fashion sense and she thinks that she is funny.  I love it when she shares something about her day.  The aides sometimes tell the bus driver things that they don't write on the paper that comes home with her so it is just another way that I can stay informed.

Every year we try to get Haley to be social with her bus driver.  She has never used her bus drivers names, even though we talk about them at home.  This year she finally gets out of the bus and turns and waves goodbye. 

I really appreciate the short bus, it is much more than a means of transportation.  I think riding that little bus has been a big part of Haley's education.

Mom

I celebrate little victories.  It comes with the territory.  This weekend my daughter walked up to me and said "Mom."  My heart stopped.  It was a red letter day.

When I looked back at the reports about Haley's development I read that at her first evaluation they had recorded her only saying two words.  She said "mama" and "dada."  This was at 20 months of age.  I know every parent looks forward to the first utterance of their child that means they know who they are and who you are, but for me it has been a fleeting thing.

I don't think those sounds that she made were really in reference to us.  I think they were just sounds. 

There was a time when Haley didn't really know who I was.  She didn't have separation anxiety.  She would go to anyone.  She was handed over to her daycare provider, her therapists, her grandparents and back to me and it made no difference to her.  That did change however after I "retired" from my full time job and became her sole caregiver during the day.  Eventually she did realize I was her mom and she did have separation anxiety when I left her.  She was almost three when that happened.

Over the years Haley has learned to say her own name and her sister's name as well as the names of friends at school, teachers, grandparents, animals, toy animals and dolls.  She talks about people, but she doesn't really address people.  If pressed we can get her to repeat our names, but it has only been in the last couple of years that she really uses them.

Until this weekend she had never used them spontaneously. 

She hasn't done it since either, but I am so excited about that one time that I think it will last me for quite a while.

Haley's Glasses

Haley has had glasses since she was about four months old.  Her eyes continued to cross long after they should have stopped.  That was the initial reason for the glasses, we know now that she has astigmatism as well.  Her glasses are mainly to help the eye crossing. Over the years we have had to patch one eye or the other so that one eye does not get weaker than the other. The eye doctor scared me once saying that if something were to happen to the strong eye she would lose her sight. 

We later learned that she has no depth perception.

It is extremely hard for me to imagine what that might be like.  When she started walking it was a real obstacle.  Parking stripes were difficult to navigate, when we approached an accessible parking space she did not want to step on to it.  She couldn't tell if it was a step up or a hole that she would fall into.  She had to trust me that I wouldn't lead her somewhere dangerous.  It took her a long time to do that.

Play structures are the worst.  I am sure you have seen those big wooden or metal play structures on playgrounds.  Haley had problems stepping up on to them of course, but she also had the problem of stepping off of them.  If the surface of the structure was the same color as the ground material it sat on she would try to step right off.  Sometimes that could be a four or five foot drop,

As an architect I had been dealing with ADA (Americans with Disabilities Act) issues concerning designing enough parking places, the correct design of accessible ramps, the right layout for accessible restrooms and more.  It wasn't until I became the mother of a child with accessibility issues that it really hit home.  My biggest pet peeves are surface changes without a color or texture difference. 

Once when she was little she got away from me in a grocery store, she started heading down the aisle and almost smacked into an oncoming cart.  She didn't realize how close it was to her.

Haley has gotten used to our house, she knows where to step up and down.  Sometimes she will trip on a cord or a toy if she is not paying attention.  Occasionally I am happy to see her step over something, but it is a matter of trial and error and also practice.  She is better about stepping on and off curbs now, I think her long legs help her there.  She always uses the handrail in new situations and inches her foot toward the edge of the step.  She still relies on our help.  She hates escalators, but we are working on that.

I don't really understand how the glasses might help her depth perception, I don't think they do, the doctor said she would just have to get used to it. 

It was hard to have an infant in glasses.  The first pair we got her had a strap around the back of her head so they wouldn't fall off when she was crawling.  We have gone through lots of glasses in her twelve years, but I have been amazed how long some of them last.  She is usually pretty careful with them.

When she doesn't have them on it really changes her appearance.  I used to take them off for pictures so there wasn't a glare on them, actually the photographers wanted me to do that.  I realized that we were not getting an accurate representation of our daughter so we don't do it anymore. 

The other day my husband had gotten her dressed, but had forgotten to put her glasses on her.  I had seen her walking through the house and she had her glasses on so I thought nothing of it.  He came in the room and asked me if I had put them on her.  We decided she must have gotten them and put them on her self. It seems that they have become a part of her.

Developmental Delay

What is developmental delay?  When I first heard that diagnosis I really didn't understand it.  At that time I didn't run right home and look it up on the computer.  I went with what the professionals were telling me. 

They told me that Haley was behind in all areas of development, cognition, socialization, gross motor skills, fine motor skills, communication and adaptive abilities.  Percent of delay, which is the difference between her chronological age and her functional age, with a measurement on the tests greater than 25% would qualify her for services.  My child's percent of delay range was from 28% to 91%.  According to the tests there was no doubt she was developmentally delayed.

The word delay led me to believe that she would catch up.  Her functional age on the tests was about half of her real age.  We took her to a wonderful therapy center for speech therapy, occupational therapy and physical therapy beginning when she was about 20 months old.  We then took her to be evaluated at OHSU a few months later and she had already shown improvement.  In fact they said that she had improved at a rate that they would expect from a normally developing child.  This gave me encouragement.  This made me think that it was only a matter of time and therapy.

It took me some time to realize that was not the case.  I value every therapy session we took her to.  I am greatly indebted to every teacher she has had.  My child has learned and grown, but she is developmentally delayed. The term was coined  in 1970 to describe the population of individuals who had historically been institutionalized.  It basically means mentally retarded.  The term mental retardation is used after the age of five.  When she was diagnosed at that age with mental retardation friends and family who know Haley were appalled.  That can't be right, Haley is so smart.  She is, I think, but you can't deny that when you look at other twelve year olds it is pretty obvious that she is delayed.

It is what it is.  Haley is the way she is.  We continue to do the best we can for her.  I see little things everyday that are improvements, but I don't expect her to someday catch up.

A horse of a different...name

Yesterday I walked in to the kitchen and there were some horses on our bar table.  A little later on I came back in to the kitchen and there were more horses on our bar table.  I asked Haley if they were having a party.  I still don't really know why they kept showing up, but it gave me an idea.

One of Haley's favorite things to look at on YouTube is the Schleich horse montages.  It is amazing to me what you can find on YouTube.  I haven't really done a lot of searching, but my daughter can find the most interesting things.  Kids, young girls mostly, like to put videos on YouTube of their Schleich animals set to music.  Sometimes they are in natural settings.  Sometimes they are just sitting on the shelves in their rooms.  Usually they are identified by the names the girls have given them.  Haley loves to see the horses that she owns on the screen, she calls them by the names we have given them.

Haley doesn't really name animals or dolls, for that matter.  I usually name them.  This came from necessity.  If she gets a new horse and we don't name it for her it will be named Horse, which would be fine, except sometimes she is looking frantically around the house for one of her horses and if it didn't have a name we would be in trouble.  Haley often sleeps with her horses and if she needs a certain horse to fall asleep it is really helpful to know which one she is in need of.  Ten horses all named Horse would be a problem.

The first Schleich horse Haley got was a gift from our neighbor.  Haley used to ride horses as part of her physical therapy and our neighbor brought her daughter to ride with us.  Haley's favorite horse at the riding center was called Chelsea.  The Schleich horse looked just like her, so she came with the name.  Over the years Haley has carried that horse so much that the coloring has completely worn off in places.  She is lame, but we haven't had the heart to put her down.  She fell from a considerable height one day, the second floor of our home.  Many of Haley's horses are missing ears and the very ends of their tales, but Haley loves them anyway.

Seeing all of her horses lined up like that I couldn't help getting out the camera and asking Haley to tell me their names.  When I type what Haley says I hear it in my head exactly how she says it, but you my dear reader are probably hearing your own voice in your head.  Now you can hear Haley's voice.  Enjoy.

After we made this video Haley went up to her room and brought down a few more horses.  She insisted that we name them as well.

Should I be worried?

Since Haley was very small she has loved to watch videos.  I would love to be able to say "When she was three..." but I can't.  As I sit here I have remembrances of Haley but I couldn't tell you how old she was when she did things. 

I haven't been very good about documenting Haley's life up until now.  Her baby book is empty.  In my defense it isn't because I didn't want to fill it out, she didn't have all of the little milestones that parents can record in her first year.  Haley didn't roll over at four months like her sister.  She didn't crawl before she turned one.  She didn't actually walk until she was two and half, and that she did in therapy so I didn't even have a camera or camcorder with me to capture it.  My memories are scattered so I will do my best to guess, but that is all they are; guesses.

Anyway, for as long as I can remember Haley has loved to watch videos and it was at a very early age that I realized that Haley is partial to villains.  I remember watching Lion King with her for the first time.  I was a little worried because it can be kind of scary (like most Disney cartoons) and I wasn't sure how she would react.  Imagine my surprise at her reaction to Scar, she loved him.  She would laugh when he was on the screen, I would almost say cackle.  The first scene that we meet Scar he grabs the poor mouse and lifts him up to taunt him, she loves that scene.  Later on in the movie when he is doing the same thing to his brother before he throws him from a cliff she also cackles.

That is not her only favorite character.  Haley loves Cruella De Ville.  She loves her in the cartoon as well as in the live action versions.  I will admit that I think Glenn Close did a phenomenal job in that role, but I really think that she is one of Haley's favorite characters.  When I say favorite that is not an easy thing to qualify.  Haley doesn't really seem to get the concept of "favorite."  We have asked her to name her favorite food, color, toy, drink, cereal, train engine, you name it, she just gives us a blank look.  I am basing my assumption that these characters are her favorites by her reactions to them, also the fact that she will actively seek them out not only on her videos, but also on YouTube (which is a subject for another day.)

Some of her other favorites are; Tzekel-Kan in The Road to El Dorado, the Beast in Beauty and the Beast, the grasshopper in a bug's life, Hades in Hercules, the wicked queen in Snow White and the Seven Dwarfs, and Maleficent in Sleeping Beauty.  Haley is a very gentle person.  She pets animals with care.  She likes to give her toys loves and kisses.  I don't know about this darker side.  Should I be worried?

A little window into her school day

Over the years Haley has had several one on one helpers in school.  She needs a one on one to help her focus on her tasks. She does a lot of things with the class, but she really isn't that good with group activities. The other reason she needs a helper is because she is a flight risk. She would walk off and not know how to come back. I hope she is getting better about this as she gets older, but when she was younger it really worried me. It is a huge relief to me to know that there is someone with her that can watch out for her, but also I think it helps Haley cope to have consistency.

Haley went to kindergarten at a school across town and then was transferred to our local neighborhood grade school for first grade.  Haley had a one on one helper for the first couple years of grade school for part of the day.  Haley was very attached to her.  She was someone who Haley really enjoyed being with and would often "talk about" when she got home.  It was very sad when she was no longer able to be Haley's one on one.  She had to leave the school because she was diagnosed with cancer.  Haley didn't know why she was gone and she asked about her for quite a while but she did get another great one one one helper after that and soon qualified for a full time one on one.

By fifth grade her teacher thought it would be a good idea to try getting Haley used to someone new so that the transition to middle school would be easier.  It worked really well.  Haley is in middle school now.  Her fifth grade one on one helper was able to transition with her so that when school started there was someone familiar to her in the classroom.  Haley seems to be doing really well in middle school. I really am happy with the teacher.  This year she has a different one on one helper, but she seemed to make the transition really well.

Haley really enjoyed sharing time in grade school. One day a week she would be able to bring something from home to share with the class. She always knew when sharing day was. One year they decided to move sharing day from one day to another. It took her quite a while to get used to that. Middle school did not have sharing day so I was a little worried how she might handle it.

I was very excited when they sent home some forms for us to fill out everyday that let them know what Haley does at home.  It is nice to be able to send the paper because she gets to "share" her home activities every day.  They also send me a form that they fill out that lets me know what goes on in school.

The form we fill out has pictures that represent the kinds of things she does at home.  There is a trike for playtime, a CD for what she might watch, listen to, or play on the computer, a picture of two parents and a child for family activities, a picture of a minivan for places she might go, a picture of a church, a picture of a funny looking little man with a hamburger and cup and straw for what she ate, a picture of a grocery cart and the word "other." 

It didn't take long for Haley to get the hang of the forms.  She is very excited to share her form from school with me when she gets home.  This form has lines for math, reading, writing, choice time, PE, cooking, field trip, speech, computer and w.c.  There is also a box at the bottom where they can write me little notes.  I love to find out what she did during the day. 

There are still mysteries though.  Sometimes she will come home with things in her backpack and no explanation as to what they are our why she has them.  She is never any help with this.  Everyday when she gets off the bus I ask her "How was school today?"  She says "Fun!"  That's all I ever get, so I feel like the forms are giving me a little window into the world of Haley's school day.

Haley's Hugs

Grandma C left this morning after staying with us for a week.  We had a lot of fun together while she was here.  It is always nice when she can stay that long because it gives Haley enough time to get comfortable with her.

It is not just Grandma C that Haley needs time to get comfortable with.  Haley doesn't make quick transitions.  Whenever we do something new it takes Haley a while to get into it.  She needs time to process things I think.  This is getting better as she gets older, but it is still a reality for us.

The first night when Grandma got here Haley was excited.  She was visibly more animated than usual.  She doesn't run into Grandma's arms like other kids do when someone comes to visit, she acts very shy.  She smiles a lot and she gets giggly.  She did not go right to sleep that night.  She kept coming downstairs after I put her in bed.  She came down and stood there grinning at us, it is not easy to be stern with her when she does this, she is so darned cute.

The next day she wakes up early and goes to check that Grandma is still here.  She is still very excited, but she still does not seem comfortable with her.  It takes her several days.  By Wednesday I think she actually answered her when Grandma said "Good Morning, Haley.  How are you today?"  Mom thought it was nice when Haley put in a video and sat on the couch to watch it.  Grandma C asked "What are you going to watch Haley?"  Haley held up the little plastic pig she was gripping.  Mom guessed that it was either Charlotte's Web or Babe.  It was Babe.

As Mom was leaving this morning I gave her a hug.  Haley was sitting on the couch watching her show.  I asked her to stand up and give Grandma a hug. 

Hugs are rare commodities with Haley.  I mentioned in another post that I sometimes get one in the morning, that is a fairly new development.  Usually when Haley gives hugs she kind of sidles up to a person.  You might get a sideways hug (which is more like a run by) or a back hug (which is when she spins and backs up to you allowing you to squeeze her shoulders before she bolts.)  Recently Big Sis discovered that if you ask for a hug with your arms up like your signalling a touchdown she will also raise her arms and when they come down on your shoulders that is about as close as you will ever come to getting a real hug.  I think I might be getting morning hugs because she is still a little groggy.

My Mom is somewhat jealous of my Husband's father - Grandpa C.  Once we had a visit from Grandma C and Grandma & Grandpa at the same time.  Grandma C was already here when G & G arrived.  Haley had already had some time to get used to my Mom so when the doorbell rang and I opened it to reveal G & G she had gotten over the initial shy period.  She ran to Grandpa and gave him the closest thing we have ever seen to a spontaneous hug.  My Mom is a good sport though, she just laughs it off and says that the only reason Grandpa ranks higher is because he has a John Deere tractor.  I think she is right to a certain extent, but she does have an advantage too, Haley can watch trains from her house.

This morning I raised my arms in our "touchdown" way and Haley did too.  She gave Grandma C a pretty good hug, partly because they are exactly the same height now.  I think Grandma C was happy with it.  It was more than she got from Big Sis who was running out the door at the last minute to catch her bus.

National Train Day

In honor of National Train Day we took Haley to see her favorite steam engine, the Southern Pacific 4449 Daylight.  We did not however tell her that we were going.  Haley and her Dad usually go "train watching" on Sunday mornings, but this weekend we have other plans on Sunday so when we told her we were going to see trains on a Saturday she assumed it would be business as usual.  Grandma C is in town so we thought she would enjoy this experience too.

We arrived at the depot and started walking toward it and Haley started pointing to all of the people wearing SP&S 700 and Daylight hats and shirts and I realized that I failed when I got her dressed.  She should have been representing.

At the entrance we were greeted by clowns that gave Haley a sticker(which she loved.)  Then once inside we got a bag of swag.  She immediately started collecting things to put into it.  Haley loved all of the booths that were set up.  She looked at everything and took everything that they were offering.

Haley saw this as a perfect opportunity to increase the size of her railroad t-shirt collection.  She is growing out of some of her favorites.  She chose two new t-shirts; a Daylight shirt and a black 700 shirt that glows in the dark.  She would have taken more of course, but I had to draw the line somewhere.  She also got a new 700 pin, the kind that guys like to pin on their hats, but we pinned it to her purse.

We stopped at every booth and then walked through the depot and we decided it was time to show her what we had really come for.  We had heard the whistle from inside the depot and I had asked what she could hear.  I think she was already overwhelmed by the crowd because she didn't answer me.  Haley can usually tell you what kind of train is coming by the sound of the whistle.  She knows the difference between the Amtrak whistle and a freight train whistle, she can identify the 700, the Daylight, and the 10 by the sound of their whistles.

I started to head toward the door and I could tell that Haley knew what was going on because she started to back up.  Haley loves the engines.  She loves to watch them on the TV screen.  She loves to watch them go by from the comfort and safety of our vehicles.   She does not like to be close to them.  As I gently pushed her through the door I could feel her start to shake.  She was scared.

This  is something that we have dealt with for a while now.  Her father loves trains too.  She got her love of trains from him.  He likes to be close to them and he knows she loves them so he really wants her to be comfortable enough to join him.  I think that is why he made sure I came with them today.  He is the one that gets her excited, I am the one that can calm her down.

The closer we got to the engine the more she held on to me.  She was pushing me back.  I was calmly telling her that I wouldn't let her get too close.  I wouldn't let her get hurt.  I don't really know what she is scared of.  The thing is big and it is loud.  If she got very close it would be hot, but we would never make her get too close.  They had a platform built so that people could easily get up to the cab level and look in, they could even talk with the engineer.  There was a long line for it.  I knew that we would not be going there.

The engine was steaming and puffing.  Without warning the whistle would sound.  That thing is really loud when you are that close.  Whoever was pulling the chord was being gentle though because it could be a lot louder.  Haley jumped every time.  I don't blame her though, so did I and everyone else that was there.

We passed the engine and went up on the overpass that looked down on the yard so that she could get a birds eye view.  I hoped that she would feel more comfortable further away.  I think it did help.  From that vantage point she could see the other cars they had on display and she saw the caboose. 

I saw that there was a line to get into the caboose and asked her if she would stand in line to go into the caboose.  She said "Yeah."  She did really well in that line (it went quickly.) 

Haley really enjoyed going through the caboose and the pullman car.

When we got back down on the sidewalk from the pullman car she turned to me and said "Yukon."  That was it.  That was all the "fun" she could take for one day.  As we left she kept telling us about her experience.  "Caboose.  Fun.  Daylight.  Yeah.  Caboose.  Fun.  Daylight." and on and on.

What she doesn't like.

Haley likes a lot of things.  When she was in grade school she had a homework assignment to cut pictures out of magazines and make a collage of things she likes and things she doesn't like.  This was basically homework for me.

I had no problem finding pictures of things that Haley likes.  I added pictures of animals, foods, toys and even the train engines she likes.  Finding something she didn't like was harder.  I thought and thought.  Really the only things I knew she didn't like weren't really things at all. 

Haley didn't like to swing or rock.  That was due to her vestibular system.  Big words that meant it really made her cranky if you tried to rock her or put her on a swing.  She had to swing as part of her therapy back then and I could barely handle it, she screamed and cried.  Awful.

She didn't like to be restrained.  Well really who does? but if she wanted to do something that she couldn't and I held her back she didn't like that.  I couldn't really cut a picture out of that to paste on to her homework.

She didn't like to have to take medicine so I cut out a picture of a bottle of Tylenol and put it on her collage.

Haley still likes most things, but I found out recently what she doesn't like.  Haley doesn't like pecans.

A long time ago I started giving her snacks in a small ramekin so that I knew how much she was having.  Also the whole idea of her running around the house with a bag of chips or something gave me hives.  She likes nuts.  I bought mixed nuts from Costco and she wanted to have some of them as an afternoon snack.  She brought me the container of nuts and the cup.  I dumped some nuts in the cup and gave them both back to her and then she put the container away and went off to have her snack.  Later on I walked into the kitchen and there is the cup on the counter with pecans in it.  All of the other nuts were gone, but the pecans were left.

A couple of days later when she was having a snack and watching her show I was sitting on the couch next to her reading a magazine and she reached over and tried to feed me a nut.  I realized what she was doing so I opened my mouth.  After a few chews I realized she had given me a pecan.  I guess she figured she didn't want it and I was close so she would pawn it off on me.

Haley still likes a lot of things and I can think of very few things she doesn't like.  She got over the rocking and swinging thing with therapy. She still doesn't like to be restrained.  She is even pretty good about taking medicine, but if I had to do that assignment again now I guess I could cut out a picture of pecans to put on her collage.

Just Add Water

Haley has loved water since her very first bath.  She didn't like being naked that first time, but when she was put in the water she relaxed and I could just tell she really loved it.  I don't have to ask her twice when it is time for a bath.  I just say "Bathtime" and she is up and ready.

When Haley was in preschool they had a water table.  Haley loved that thing.  She would splash and soak herself and anyone within a three foot radius.  I had to pack extra clothes, besides the extra clothes they had already asked for.  They also had a bubble table which amounted to the same thing.

No standing water was safe.  Grandma's "pond" (which was a galvanized bucket with plants and fish), the sink full of soapy water, or just a pot filled with water to soak, the gold panning table at a silver mine in Idaho.  Haley splashes.

We have always had wading pools during the summer.  Haley just goes nuts in those things.  Big Sis tries to "swim" with her, but sometimes she can't even handle it.

Haley loves to swim, but to her it is just another opportunity to splash.  When she was little we would go swimming and I would hold her.  She held on for dear life with one hand and splashed with all her strength with the other.  It was exausting (for me.)  I got her a full flotation swimsuit in the hopes that I wouldn't have to hold on to her and that helped but it took her a while to feel comfortable in it.  When she got tall enough to stand at the deep end she could still hold on to the side of the pool with one hand and splash with the other.

Haley has had swimming lessons.  God bless the sweet girl that taught her, it was quite a challenge.  I don't expect her to ever actually swim, but we tried.  The lessons were in preparation for a trip to Arizona where we knew we would have many opportunities to swim.  She actually did finally let go of the edge during that vacation after the third day of swimming.  I still am near her in the water or on the edge ready to jump in at all times.  The real issue is actually getting too close.  The splashing is still incredible and the longer and stronger her arms get the bigger the diameter of the splash zone.

Haley gets to go swimming with her class once a month.  Yesterday was a swimming day.  They send home a note that announces that the following day is swimming and asks us to pack a swimsuit, towel and lunch.  Haley looks so forward to this that she will now get her suit, towel and a plastic sack ready the moment she gets off the bus and put them in her backpack.  She then tells me to make her a lunch.  It takes me quite a while to get through to her that I will make her lunch in the morning like I always do.

I don't really know what goes on at the pool when she goes with the school.  I know they go in the city bus (Haley says "C Bus") and her helper has to dress her into her suit and back in to her clothes.  I am assuming someone gets in the water with her and I am sure she is only allowed in the shallow end, but I wonder how her classmates and teachers like the splashing.

Oh, and in case you are wondering.  Yes, she splashes in the bathtub.  I have to clean the entire room when she is done and sometimes I have to ask her to tone it down because some days I deal better with getting splashed then other days, but there is such joy in it for her I let her go.  We don't get to swim very often and bathtime is the only good splashing time she gets.

Haley is different.

Haley is different from other twelve year olds you may know.  Here are five differences:

1.  She doesn’t text.

She has no need or desire for a cell phone. Haley has never been social. She greets animals the way most people greet friends. She doesn’t really have friends. She also won’t talk on the phone. She will listen and smile and nod her head, but she won’t talk.

2.  She doesn’t need the latest gadget.

Haley is happy with the computer. She taught herself how to use the mouse a long time ago. I remember back when we first exposed her to the computer. She used to sit on my lap and I would play computer games that were designed for young kids and she would watch. One we had was Jumpstart Toddler. She was entertained, but she didn’t seem interested in playing it herself. Then Grandma C gave her a Lion King Animated Storybook one year for Christmas and that was all the motivation she needed. She figured out the mouse all by herself one day and pretty soon she could play every game we had. She even goes on the internet now. She especially likes to go onto YouTube.

3.  She doesn’t use slang.

Some twelve year olds drive their teachers and parents to distraction with the latest slang. Haley doesn’t speak a lot so the words she uses are few and they are to the point. Haley talks about her cat Shadow, about the shows she watches, about school and about trains. She does use the words “Awesome!” and “Cool.” but I take full responsibility for that, she learned them from me. At least she uses them appropriately.

4.  She doesn’t curse.

The only words that would resemble curse words are purely accidental. Some come from the videos she watches. She doesn’t realize what she is saying though. When she is really mad she has been known to say “YOU!” and we can only guess what she means by that.

5.  She loves school.

She wouldn’t miss school for the world and she rarely does. I feel so bad when she is actually sick and I tell her she has to stay home, she cries big crocodile tears, it just breaks my heart. Luckily Haley has been sick only a very few times in her life. She looks so forward to school that soon after she comes home she says “School tomorrow?” And I tell her “Yes, you have school tomorrow.” And she says “Yay, School!” On Fridays when she asks me this question I say “No, tomorrow is Saturday. Tomorrow is a stay home day.” She says “Stay home tomorrow. School Monday?” “Yes, school on Monday.” (at least until summer vacation…)

Videos

Haley loves to watch videos.  Since she was very small she has loved them.  She never got into television.

When Haley was quite young she would play with the video cases.  She liked to pull the cases off of the shelf on to the floor.  I think she was looking at them as she did this, I hope she was not just making a mess for the fun of it.  She could also put her own video cassettes into the player and they would play, so that was a fun game.  She would put one in, watch it, take it out, stack it on the last one and put in another one.  We would have stacks about two feet high around the TV.

DVD's are trickier.  I put those in for her.  She likes the fact that they have "extra stuff" though.  My daughter likes the extra stuff.  She will bring me a DVD and say "Stuff" she will then sit and watch people talk about the movie, how it was made, the actors, how the music was written and all the other things that go into making a movie.  She loves the stuff.

Sometimes she just says "Show." I can then hit play on whatever happens to be in the machine. We can have the same video in that machine for days at a time. Haley will watch a video and when it is over she says "Again." I either rewind a tape or hit menu on a DVD and start it over again. Haley will watch a video like this many times. I know toddlers do this. Haley is twelve. That is a lot of years watching the same shows over and over. I decided a long time ago that one of the reasons she does this is because she likes to know what comes next.  It is how she can bring order to her own world.

Life is unpredictable to a child like Haley. Things can happen around her too quickly. She gets disoriented and upset by the chaos of life. Too much stimulation can bring on the MELTDOWN. She doesn't like crowds, loud noises (like big barking dogs) or flashing lights. We can't take her to a movie theater.  We just wait for the video.

She loves to watch a video over and over because she has seen it so many times she knows what comes next. It is routine. She does have her favorites; The Lion King, The Road to El Dorado, Spirit Stallion of the Cimmaron, 101 Dalmatians (all versions) and Finding Nemo are at the top. Consequently Big Sis and I have these movies memorized. We can quote them, we can sing along, we can tell you what scene is next. Haley can too. Haley loves it when I say a line in a movie just before it happens or at exactly the same time. We get the giggles from that. Well, she gets the giggles from that and then I get the giggles from her giggles.

Haley also likes videos about trains. 

What you may not realize is that there are videos about trains.  There are videos about certain engines, about certain lines, about certain trips, about how to repair engines, about the people who work on them, about engineers, about how to right one after it derails, it goes on and on.  Haley loves them all.  This started at an early age as well.  Her father likes trains, and so does her grandfather.  I could understand if she liked to watch the train go by on the screen, but that is not all there is to it.  The first time she saw a video we have about one of her favorite engines I thought that she would lose interest soon.  Not so.  She loved it.  This is a video of people talking about the engine, "talking heads" as they say.  She was enthralled.  I was amazed.

So not only am I now fluent in all things Disney, Pixar and Dreamworks I also know more about trains than I ever thought I would, or ever really cared to.

Routines

I believe that every child benefits from a routine.  We learned that with our first daughter.  Routine is especially important for Haley.  Haley does best when she knows what to expect.

MORNING

I try my best to follow the same routine with Haley every morning, sometimes I don't.  I am human you know.

Sometimes she wakes up on her own and sits down at the computer, sometimes I wake her up.  I like it when I get to wake her up.  Haley wakes up immediately and completely when I say "Haley.  It's time to wake up."  I say it fairly quietly and kind of in a sing song way and she opens her eyes, yawns, stretches and gets up.  Talk about instant gratification. 

This is in complete contrast to waking her Big Sister up, for that I need a bullhorn, a crowbar and a wrecking ball. 

Another reason I like to wake Haley up is because when she stands up I get a hug.  I love hugs. 

Then we go downstairs.  Haley usually chooses a video to watch and then she chooses what she wants to eat for breakfast.  She likes to watch a video while she eats her breakfast.  I read the paper while I eat mine.  Haley will sometimes read one of her magazines or look at the JCPenney's ads from the paper.  She multi-tasks. 

After we eat our breakfast we make her lunch, get her dressed, comb her hair and brush her teeth.  She usually has a few minutes to do what she wants after that; she will use the computer or watch some more of her show.  Then we put on her shoes and her coat, grab her backpack and CD and when the bus pulls up we head out the door.

I leave it up to her teachers at school, I know they are all about structure.

AFTER SCHOOL

When Haley gets home we take off her shoes, she takes off her jacket, we head to the bathroom and take care of business in there (we always wash our hands).  Haley has picked up my need to wash my hands as soon as I get home, I can't do anything until I do.  Then we check her backpack.  She shares any artwork that she has brought home and then she is on her own.  After all day at school I figure she needs some down time.

NIGHT TIME

Our night time routine starts with pajamas, then we brush her teeth and she gets in bed.  She has to have her Daylight pillow to her left (see the note about her favorite engines at the right hand side of this site)  and her horse pillow on her right.  She gets a kiss from Horse (a Webkins horse I brought her from Texas.)   She is very insistent about those three things.

Then I say "I" she says "I", I say "love" she says "love", I say "you" and she says "you" and then in the same manner I say "See.  You.  Tomorrow." and she repeats.  I started this a couple of years ago in the hopes that some day she will say it on her own.  Every once in a while I get a version of it.  Usually if the mood strikes her to say "I love you" it just comes out "I you."  She has said this enough times that we know that she means I love you when she says it.  Sometimes she will repeat after me so quickly we almost say it at the same time.  I am still waiting for her to say it to me first.

That right there is another reason that I think routines are important.  If we do our routines enough maybe they will become so routine that she won't need me to tell her to do them.  Is that too much to expect?