Time to Retire

My girl is getting bigger.  She is outgrowing her clothes on a daily basis.  Most of the time it is no big deal.  Clothes move to the garage where they will eventually be gathered up and donated.

Sometimes a little more ceremony is in order.

Haley has outgrown her Cowgirl Shirt.

Haley's Grandma C gave her the shirt for her birthday about four years ago.  It is really nice.  It has sparkly snaps.  It is a really pretty color.  It looks good on Haley.

The Hat was a gift in a previous year.

Haley has worn her western shirt only a few times, but those times were memorable. 

She wore it when she competed in the Special Kids Rodeo at our county fair.  This is a rodeo that Haley participated in for five years.  My mom told me about it because it was put on by a organization that she belongs to.  We had also heard about it through the stable where Haley did her therapeutic riding.

The concept is that each child is paired with a Cowboy.  That cowboy takes the child they are paired with through five events, each designed after actual rodeo events.  The first year we participated was quite nerve racking for me.  Haley went off with this cowboy and we were supposed to sit in the stands.  I am sure you can imagine my trepidation.

That first year that Haley was involved in the Special Kids Rodeo she took home the coveted "Best All Around Cowgirl" award.  She has gotten a trophy every year for participating, but that first year her name was put on the giant trophy that resides at the fairgrounds. 

It was really cool.

She didn't dress up for every rodeo, but the last one that she was able to compete in she did.  She wore the Cowgirl Shirt.  I couldn't be there for that one, but her Dad took pictures as always.

Sawhorse Roping

Goat Tail Un-Tying

Stick Horse Racing

Wheel Barrow Racing

Barrel Racing on a real horse
(Haley's Favorite)

She also dressed as a Cowgirl that year for Halloween.

Last week at the girls' school was spirit week.  One of the days was Western Day.  We got out the Cowgirl Shirt and planned her outfit around it.  I put it on her and realized that the time had come.  I had to take it back off and put a shirt under it, because I was afraid the snaps might pop open at some point during the day.  I also had to roll up the sleeves because they were too short. 

Haley cannot stand it when a long sleeve doesn't reach her wrists.   I was a little worried that she wouldn't like them rolled up either, but she seemed OK with it.

I sent her out the door in the Cowgirl Shirt one last time knowing that when we took it off that night the next stop for the shirt after it was laundered would be the sack in the garage destined for donation.

It was a sad day for me, but I don't think Haley will miss it all that much. 

She has a lot of clothes.  Most of the time I can't even close her dresser drawers. 

Lucky for me I have the pictures.

Christmas Shopping Made Easy

Haley's Big Sis sends me an email each year listing in detail what she wants for Christmas.  The list is not long but, it is specific.  I appreciate that.  It makes my job easier.

I don't (usually) get that kind of help from Haley.

She doesn't really ask for anything. She is always happy to receive presents. She likes to open presents. She isn't picky.

She always likes new clothes.  She likes new videos.  Sometime it is easy, like when a movie comes out with toys.  Cars is a good example of that.  I got on EBay and bought every die-cast car they made.  I couldn't find them in the stores.

This year is different.  She has been asking for things, in her own way.

Haley gets catalogs in the mail that feature railroad memorabilia, t-shirts and model trains.  She likes to point out her favorites to me.  I usually make a comment about the picture or to be honest I usually just mumble "uh, huh..." 

I mean, she points to just about every picture, in every catalog many times a day, all day long, every day.

Now that she has earned the money for a t-shirt and a video from the catalogs it has changed a little bit.  After I comment she usually says "Nine Dollars."  Not everything in the catalog is nine dollars, but most prices end in .99 so to her that is what it means.

She especially likes to point out the model of her favorite steam engine, the 4449.  She tells me that it is nine dollars, but it is not. 

It is $499.00. 

I know that she wants it, that is obvious.  Little does she know that even if I had a momentary lack of judgement and bought it for her I wouldn't let her touch it.  That wouldn't work for her. 

She would want to touch it.  She would want to carry it in her purse.  She would want to sleep with it.

So the other day Haley was on the computer.  She was talking and she wanted my attention.  She wanted to show me something.  I walked over to the desk and looked over her shoulder. 

She was on EBay. 

She was pointing at a picture of the Daylight.  I looked closer.  It was a Christmas ornament.  It was pretty detailed.  It was about nine dollars.  I said "uh, huh...", distracted her, signed in to EBay and put it on my watch list.

This morning I found many of the same ornaments with many different prices.  I decided to bid on one and buy another.  I will put one away for her in it's original box.  The other one will be for her to touch.

To put in her purse.

To sleep with.

Christmas shopping made easy. 

Thanks, Haley.

Thrown Off

I hate early release days.

The schools in this area have early release days around the trimester change.  They are getting ready for teacher conferences.  The kids get out of school two hours early.  I imagine that each class time is reduced.  Lunch is probably at the wrong time too.

That happened yesterday.

Haley got off the bus.  She started her normal after school routine, including wanting a snack.  I was thinking to myself that she just ate lunch, but I thought a little snack wouldn't hurt her.  Then she wanted another one.  And then another one.  I opened her lunch box.  Sure enough it was empty.  I really don't know where she puts it all.

Her Big Sis had plans to make a lemon meringue pie when she got home from school.  She started on it right away.

Then things started to unravel.

As I sit here I don't remember what set her off, but she was off. Everything made her mad.  She was practically bristling.  I realized that I needed to go to the store for a few things.  I looked at her sister and realized that with what she was doing there was no way that I could leave Haley with her in that state. 

I asked Haley if she wanted to go to the store with me.  She said "Yeah."  And than she said "Bucks" which means Starbucks.  Haley and her sister have started walking to Starbucks for drinks.  Haley likes that.  Whenever we say store now that equates with Starbucks.  It used to mean The Mall to her.  I don't know which is worse.

I said "No Haley, we are not going to that store."

That set her off again.  I told her I needed to go upstairs for a few minutes and then we would go.  She started following me.  Screaming. Her Dad was upstairs working.  I could tell he was on the phone.  I quickly stopped her and pushed her back in to the kitchen, I could hear her Dad close the door to his office.  I knew if Haley ramped up a closed door would not be enough.  I tried to calm her down.  I asked her if she wanted to go with me again.  She said she did.  I sat her down on the couch and told her to pet her cat for a few minutes.  Her sister came over and started talking to her and petting the cat.

I ran upstairs and got ready.  When I came down we got her shoes on and left.

She was fine on the ride over and she was pretty good in the store. She likes to help me push the cart.  As we were leaving I could feel her getting a little upset.  I think she realized that she hadn't gotten anything. 

We got in the car and she rolled down the window.  I looked over my shoulder just as she stuck both of her hands out the window.  I told her to roll it back up again and then I locked it.  Then she proceeded to bang on the glass and scream.  I tried to talk to her.  To redirect - as we say - I asked her how she felt.  I asked her if something hurt.  I could see in the rear view mirror that she touched her head.  (Yeah, I was getting a headache too!)  I told her we would go home and have some medicine and relax on the couch.  I asked her if she wanted to watch a movie.  

She said "Yeah." 

"What movie do you want to watch?"  

"Cars."  

"OK, we will go home and watch Cars."  

That worked.

When we got home we both had a pain reliever and sat down on the couch.  After a while I think we both felt better.

I can't say with complete certainty that the change in her schedule caused all of that, but I have a strong suspicion that it did.  It has happened before.  She does better with a schedule.  She thrives on a schedule.  You mess up her schedule and this is what you get.

Well, it is what I get.

I hate early release days.

The Dance

Haley's Big Sis went to her Homecoming dance last weekend.  She had friends coming over.  She had plans to curl hair and put on makeup. 

I wasn't there.  I had other plans.  I gave my husband explicit instructions to take pictures.  I wanted pictures of everything.  I made sure that Big Sis knew of those plans so that she wouldn't shut him down.  I made sure that she knew it was important to me.

At a time that I thought everything would have calmed down I called my husband to find out how it went.

I wanted to know if the girls had made it.  I wanted to know if they looked pretty.  I wanted to know if their dates arrived.  I wanted to know if he took some good pictures.

Apparently all of those things happened, but what he wanted to tell me was that Haley wouldn't go to bed.  I called about forty-five minutes after nine.  She should have been asleep. 

I had forgotten about Haley. 

Not that she was there, but how she might react.

He said she was fine while everyone was here.  She was fine afterward too.  It was when he told her that it was time to go to sleep that she got upset.  She never said anything to him that would give him a clue as to why she was upset.  She just wouldn't cooperate with him.  She threw herself on the floor and laid there.  I asked him to hand her the phone.  I tried to talk to her.  I tried to get her to talk to me.  She didn't.  She grunted a couple of times.  I told her that she needed to go to bed. 

I wished my husband good luck and I hung up.

The next day I looked at the pictures my husband had taken and I got a little more of a clue as to what had happened.

Haley's Big Sis and her friend curled their hair.  They put make-up on.  They got dressed up in pretty dresses.  Then they put make-up on Haley.  Then the boys came.  Haley's Dad took pictures of them.  He took pictures of the each couple, of the couples together, of Haley with all of them.

Then they left.

It didn't take much thought to figure out why she was upset.  It is Fall.  Halloween is on the calendar.  Haley is ready.  She wants to Trick-or-Treat.

Everyone got dressed up.  They put make-up on.  Haley got make-up on too.  Then they left her.

I imagine that she thought she was missing Trick-or-Treat.

When Haley got home from school I made a big deal about the fact that I have not yet made her costume.  I have the fabric and we have talked about it.  I made sure that she knows that she hasn't missed anything.

Halloween is still on the calendar.

In the excitement I forgot about Haley.  It doesn't happen very often, but when it does it hurts.  I know this won't be the last time that her sister gets all dressed up and leaves her home. 

I have to remember Haley next time.

I Like It

I can usually tell how Haley feels about something.  I can tell if she is happy, or sad, or angry.  I can tell if she is having fun.

I know what she likes.

I know these things by how she acts and what she does.  She doesn't tell me with words.  I gauge her reactions.

Lately though she has added a new phrase to her repertoire. 

She says "I like it."

It is so fun to hear her say that.

It started with The Sweater that she got from her Grandma J.  She rubbed the arm of the sweater and said "So soft."  She sniffed it and said "Smells good."  Then she said "I like it."

Now she has started to use the phrase for other things, like videos, her horses and peanut butter on crackers.

It says to me that she is learning.  She is putting her world in context.  She has an opinion.

I like it.

My Anchor

There is no training manual for How To Be A Parent. 

There is also no training manual for How To Be A Parent to A Child With Special Needs.

I am making this up as I go.

I have help though. 

She may not know it, or realize how much she helps, but I am indeed helped by Haley's Big Sis.

I don't just mean that she helps me with Haley. 

She does that. 

She takes care of her sister when her Dad and I have somewhere else to be.  She helps us take care of Haley when we are out and about.  She plays with Haley sometimes.  She includes her.  That is all great.  And it does help, but that is not what I mean.

Haley's Big Sis helps me be who I am.  She helps me stay who I am.

In some ways Haley's Big Sis is a lot like me.  We share interests.  We like the same movies, the same actors, the same music, the same books.  We each like certain things that the other doesn't, but for the most part we have the same tastes.  We like a lot of the same foods. We like to go shopping together.  We go to rock concerts together. 


We have inside jokes (that drive my husband crazy.)

We can be watching TV and a preview for a movie comes on.  My daughter says "Mom, it's that kid."  I say "From that one movie."  She says "Yeah, with that girl."  I say "Yeah." and we both laugh.

And my husband groans.

It happens frequently.  It cracks me up.

She keeps me sane by allowing me to act a little insane.

It is hard to explain.  The point is that it helps.  I don't know what I would do without her.  She is a junior in high school.  Next year she will be a senior.  Then she will do something else.  College hopefully, but something.

I am scared.

I don't know what I will do without her.

Was it something I said?

I scheduled a haircut appointment for Haley at 3:00 pm.

The bus drops her off at our house anywhere between 2:00 pm and 2:15 pm, so I thought there would be enough time for Haley to have a snack and also some time for me to wash Haley's hair.

Haley will not put her head back in the sink at the salon. Our stylist cannot wash Haley's hair. I learned a long time ago that I had to do it at home.  Her hair is still wet when we get there, wet enough anyway that all she has to do is spray a little more water on it. She also puts a cream in it that keeps it workable while she cuts it. It is fascinating to watch her cut Haley's hair.  Curly hair is really a different animal.

So, anyway, I thought I had enough time.

I had planned out what I was going to do. I was going to let Haley come in and do her normal after school routine. I was going to let her take off her shoes and jacket and put them away. Then I was going to let her check on our cat, go to the bathroom. wash her hands, and get a snack.  Then I would wash her hair and we would go.

So the bus pulls up and Haley gets out. We walk in to the house.

And...

I lose my mind.

I tell her that she has a haircut appointment.

I tell her that I want to wash her hair.

I realize what I have done and I try to back track.  I try to explain myself. I try to reassure her that she has time for a snack.

It is too late. I am ruined.

Haley started touching her hair and giving me a really concerned almost scared look. I don't know what she was thinking. I said "Your hair is going to be pretty."

"Pretty!" she cried. She cried. She touched her hair some more.

Oh, no...

"Yes, your hair is pretty now, but it needs a little trim. You like to get your hair cut. Are you excited to see Camille?" (name changed)

"Camille?"

"Yes. Do you want to see her?"

"Yeah."

OK. So then I came back to my senses and we took off her shoes and her coat and put them away. She did the rest of her routine and I offered her a snack. I didn't wait for her to ask for it. I made it and put it in front of her. This agitated her too. She got upset all over again.  I turned the TV on and tried to get her to focus on her show. 

That helped.

When she was done with her snack I told her it was time to wash her hair. I asked her if I could wash her hair in the sink. She looked a little concerned. She agreed and we walked over to the sink. I tried to help her bend over the sink and she balked. I don't know why I thought that was going to work. I told her that it was OK.

We would go take a quick bath.

We went upstairs and as we walked in to the bathroom she started crying again. At this point I was dumbfounded. I don't know if she was still upset about the assault she got when she got home, or if something else was going on. I tried to explain to her that we were just going to wash her hair and get her dressed again and then we would go. She cried the entire time she got undressed and while the tub filled. She cried while I washed her hair. She cried while I dried her hair and helped her get dressed.

I told her it was time to go.

"Go," she said.

"Yes, it is time, let's go."

Then she was fine. We got her shoes and jacket on and left. The haircut was fine. She sat completely still. She was very quiet. When we left she touched her hair and said "Pretty."

I knew better.

I had a plan. I sabotaged myself and I don't even know why.

I got ahead of myself.

I must remember this lesson in the future.

How Do You Feel?

School started.  Leaves fell.  The weather turned.  Rain started falling. 

Germs entered our house.

All four of us have been sick.  Ill.  Slight sore throats, runny stuffy noses, general malaise... just not right.

Not all at once mind you.  One after another. 

A constant run-on sentence of discontent.  I am so over it!

Anyway, as the weather changes our needs change.  The clothes we wear have more;  longer pant legs, longer sleeves, thicker fabric and layers.  For some of us that transition comes naturally. 

Some of us need a little help.

Haley doesn't seem to know how she feels.  She has a high tolerance for pain, we have known that for a long time.  We found out the hard way.  Apparently she also has a high tolerance for discomfort.  Remember when your Mom would say "Put a sweater on, I'm cold." 

It is just like that.  If I am cold I assume she is and I dress her accordingly.

She wore sandals all summer.  She didn't wear socks.  Most of the time she wore shorts, but even when she wore long pants she didn't wear socks.  So lately she is running around the house without socks and I am cold. 

So I say "Haley, do you want some socks on?"

"Yeah."

So I put socks on her.  Otherwise she would have gone without socks all day.  If I am cold I put a sweater on her.  Most of the time she leaves it on.  Sometimes she takes it off.  There are times when she has gotten a sweater or jacket out of her drawer and put it on by herself, or asked for help with it.

I assume she feels cool, but maybe she just likes the sweater.

Last night Haley's pull-up leaked.  Her pants were a little wet.  I looked at the clock and realized that it was pretty close to her bed time.  Her Big Sis runs around the house all of the time in pajama bottoms and so do I on occasion (especially when I am sick.)  I thought they would be easier for her to put on than pants, so I told her to go upstairs and put on pajama bottoms.

She did that, but there were some other changes too.  Haley is a creature of habit.  Some processes don't change.  So in her mind if she was putting on pajamas other things had to happen.

She had taken off her glasses and her socks.

She does that before she goes to bed.  When pajamas go on glasses come off.  She will not wear socks to bed, so the socks came off too. It didn't matter that she would be up another hour or so. 

That is just the way it is.

So there she is without socks again.  And I am freezing...

The Drama

There has been a lot of drama around here lately. 

Some good, some not so good.

I will start with the good.

Haley loves to watch videos.  She watches many videos a day.  Sometimes the same video over and over all day long.  Sometimes a different video is put in after the last one ends.  She (we) have watched some videos so many times that she (we) have them memorized.

I can't help it.  I have the kind of memory and flair for the dramatic that I tend to repeat what has been said on the screen.  Or I anticipate it.

Haley does the same thing.

It started a long time ago.  She would mimic what was happening on a video.  Not really saying the same words, but making sounds that sounded like what had just been said.  Especially if it was said with enthusiasm.  Later on she would repeat the last word of a sentence.  Then some time later she started anticipating what the character was about to say.  She also reacted to what was said.  She would laugh if something was funny, or silly, or scary. 

I mean it might have been scary to another kid, but to her apparently it was funny.  Her favorite characters seem to be the villains.

This week something has changed.

Not only is she saying full phrases (not just the last word) she is saying them with the character.  She is acting them out.  If the character turns to the left when they say it she does too.  If they flourish with their arms, so does she. 

It is fascinating to watch. 

And, like I said, I have a tendency toward the dramatic so I have a tendency to join her.

The Drama...

Now the not so good.

Haley does chores for money.  She has been doing really well with the chart on the refrigerator that tracks her money. She had been earning money for a train video by taking out the recycling.  Most of the time I just say "Haley, can you take out the recycling?"  and she comes running.  Sometimes she doesn't and I have to remind her the reason she does it.  "Haley, do you want to earn a dollar?"  She says "Yeah."  And then she does it.  If her Dad asks her she usually gives him the "teenager grunt" and doesn't move.  Then I ask her and she complies.

The other day I asked her to take out the recycling. 

She didn't move.

I reminded her about the money.

Nope.

I told her that if she didn't get up and do it that I would. 

Still no response.  So I took it out. 

When I came back in and put the basket back in the pantry she walked in to the room and pointed at the white board.  I told her that I would not be putting an 'X' on the board because she did not do the job. 

She threw herself on the floor and had a fit.  She pointed to the refrigerator and yelled "Money!"

"Haley, I took out the recycling by myself.  You didn't help me.  You didn't earn any money."

Her fit went on for quite a while. 

I left the room.

The Drama...

Mixed Emotions

Thursday afternoon Haley came home on the bus and gave me a note from her teacher.

Haley has had a runny nose for the second half of the day.  We have had half of our class out with the seasonal bug. Otherwise, today went well.  Haley is finally adjusting to our new situation over here.  Kids really like her, as does all of our staff in both programs  We are beginning to track goals after doing extensive work at building the class... I hope all is well at home.

I kind of knew that was going to happen.  Haley's Big Sis had been sick the week before and then I got a mild version of it on the weekend.  It is really hard when Haley gets sick.  She can't tell me how she feels so I just have to guess.  It sort of helped that I already had it, I know how I felt.  I re-stocked our medicine cabinet and prepared myself for the worst.

We didn't get much sleep that night.

Haley was very stuffy and she got up to have me help her blow her nose approximately once an hour.  In the middle of the night it was time to give her more medicine.  After that I think we got a couple of hours of uninterrupted sleep.

It is better during the day.  She has learned to get herself a Kleenex and blow her nose on her own.  I guess she doesn't do that at night because she is a little groggy.  She stayed home from school and took it easy.

Last night we slept all night. 

I woke up and looked at the clock.  I was amazed and relieved.  Then another feeling swept over me.  Worry.  Dread.  Fear.

Bear with me, I will explain.

Haley gets up at least once a night and comes in to our room and then I get up and put her back in bed and cover her up.  Usually when she climbs back in bed the sheet and blanket and quilt are a mess.  They are either at one side of the bed or the other or clear down at the foot of the bed.  So I assume that she kicks off the covers, gets cold, and then doesn't know how to cover herself back up.

There was a time when she was small and I was less patient that I just told her to go back to bed.  I vaguely remember that.  Some nights she did leave my room.  Whether she actually got back in bed was debatable.  She sometimes played computer.  Sometimes watched TV.  Sometimes played with her toys.  Sometimes fell asleep on the couch.  Other times she didn't leave my room.  She just laid down on the floor by my bed and fell back asleep.

That was a long time ago.

It is kind of weird to think about it now.  I have been putting her back in bed like this for a while.  I don't know how long, or when it started, but it is normal.  I think I have only slept through the night a handful of times since she was born.

And on those occasions I do feel more rested, but I also get this feeling when I wake up.

"She didn't wake me up in the middle of the night.  What if she isn't sleeping?  What if she - wow, I can't even type this - died."

I have no reason to think that she could.  It's crazy.  It just comes over me.  And when it does it is paralyzing.  What would I do without her?  I don't think I could function.  Really.

I lay there with my heart pounding.  Then I listen.  Maybe I will hear some movement coming from her room.  Sometimes I do and then I am OK.  If I don't I get up and check on her.

I know that mothers of small babies do that all of the time.  I did. 

I still do.

She was fine.  She was downstairs on the computer.  I gave her a kiss on the forehead and said "You slept through the night.  Did it feel good to have a nice long sleep?"

"Yeah." she said.

Then I sat down on the couch with my laptop and saw this. 

Where's Molly?  (watch the video)

I often say that we are lucky.  I say that Haley is lucky that we live in a time where there are programs for kids like her.  Where there are medical advancements.  What if she had been born in another time.  Would she have been born?  Would she have developed like she has?  What if we didn't have Early Intervention, The ARC, her therapies, her pre-school, her life skills classes? 

What if we didn't have any support?

We have a long way to go, but we have come so far.  I am glad. 

I have her.


We all do.