2012 Milestones

Last year at this time I did a recap of the prior year.  I enjoyed it so much I have decided to do it again this year.

The following are my favorite posts of 2012.

In January I wondered What She Can Do? and she answered me.  Haley seemed to be making strides, I don't know if she really was or if I was just noticing her accomplishments because I was focused on them.  I was so proud of her when she said "Dad. Dinner. Ready.", when she stepped off of the bus and told me a Beautiful story and also at the end of the month when the Evolution of a Hug was complete.

In February Haley was Amazing!  and she left me Bustin' with Pride!

In March we got so excited when Haley said "No."  I imagine that most parents don't like to hear the word No from their children, but in our case (there's that word again) it meant that she was Correct!

I was so proud of Haley at the end of March for Taking Care of Business, but by the end of April I learned that Independence Can Backfire!

There were some ups and downs in May, but one of my favorites was Haley's notebook.  Got Words?

In June I only posted twice, but they were very fun.  At the beginning of the month you could read about Our Experiment and at the end of the month she was getting used to the Summer Schedule, with a little surprise!

The surprise was a trip to Disneyland in July!  I chronicled our trip from beginning to end.  It was Incredible and we had a lot of fun.  Apparently it wore me out because I didn't blog at all in August, but we did finally go camping at the Tree Farm.  Haley loved every minute of it. 

In September our summer routine was over, but I don't know if we were Ready for School.

In October I decided to challenge myself and write a blog post a day.  I did the 31 for 21 Blog Challenge for Down Syndrome.  It truly was a challenge for me, sometimes I was blogging late at night when I should have been sleeping.  I did capture some good moments though.  I was really excited to get a note from Haley's Teacher, "B" and the Awesome Greeting I got one day after work.  I hope you liked the post about Haley's favorite steam engine and the fact that along with Haley you got to Feel It.

In November I tried to focus on Gratitude.  It was a very busy month and so was December.  I didn't keep up with this blog like I wanted to, but there were More Thanks.

Here's to 2012!  It was a great year.

~Haley's Mom

A Little Affection

Every morning when I put Haley on the bus she buckles herself in, I give her a kiss and tell her to Have a nice day!  Then I step off of the bus turn around and wave goodbye.

Over the years this routine has changed very little.

It took her awhile to be able to buckle herself in, but what I do has always been the same.

Some of her bus drivers encouraged Haley to wave back at me or to say Bye Mom.  She did wave back when she was really little, but she hasn't done that for years.  That doesn't change my routine.

I was a little hurt when she stopped waving back.  I am a little sad that she doesn't say anything to me.  I would really like it if she did both of those things, but what I have noticed lately is that she seems to really like it that I do what I do.

My child does not complain when I give her a kiss.  I know that is not normal behavior for a fifteen year old.  This is one instance where I am happy that she is not "normal."  She also has gotten really good at giving me hugs and acquiescing whenever I want to give her one, but that doesn't happen on the bus.  She doesn't smile either.  She just accepts it.

What I have noticed is that as I step off of the bus and turn around she is looking.  She watches to see that I am going to wave.  Again, she doesn't smile, but she watches.  I noticed that this morning.  She has a substitute bus driver this week and when she has a sub she tends to be a little on edge.  I can sense that she knows things are amiss.  So she was watching for me to turn and smile and wave.  And I did.  And she kind of nodded.  She didn't smile.  Somehow I just knew that she acknowledged me and it felt good.

So, today I am grateful that I can still show my teenage daughter affection in public and that she seems to be glad that I do.

~Haley's Mom, Thankfully

This month I am focusing on Gratitude.  What are you thankful for today?

Distraction

Since we got home I have been busy.  

I am learning that my brain can only handle so much, but apparently I haven't learned to stop trying.  When Haley is in school I fool myself into thinking that I have things under control.  Then she comes home and starts her routine of requests.  I keep trying to do my job, my hobbies, the things that are on my list.  

Haley doesn't care.  

She wants her requests met.  

She has no reason to expect any different.

The problem is that I am distracted.  When she wants something I am distracted thinking about what I am doing, what I am working on.  When she wants something she distracts me.  So I have a problem.  No, I don't think my daughter is a problem.  I have a problem of trying to do too many things at once.  I feel like everyone does.  I have always had trouble relaxing.  I just don't know how. 

We were away from home over the weekend.  I wasn't able to do what I needed to do.  I am behind on my housework.  I am behind on my job.  I should have relaxed.  I didn't.

So today I don't know what I am thankful for.  I am struggling.  I guess I am thankful that I do have a job.  I am thankful that I have a job that I feel passionate about.  I think that is why I am so distracted these days.  It is important to me.  

I am also grateful that my daughter is flexible enough that her distracted mom doesn't throw her off too much.

~Haley's Mom

Gratitude

This month I am going to focus on Gratitude.  I will probably blog about many different things, things that are happening in our house on a daily basis, but throughout it all I will focus on what I am thankful for.  It may take different forms.  I want to challenge myself to post every day like I did in October.

I think I could go on and on about what I am thankful for.  

Gratitude is a natural state for me.

Today, like always, I am Thankful for my beautiful daughters.  I am so very blessed.  They are both special in their own ways and they both make my life so much better with them in it.

I am thankful that they love each other.  There is no doubt.  They have their moments like all siblings do, but there is a really strong bond there.  

My friends are always commenting about how Haley's Big Sis cares for her, how she treats her.  She is very compassionate and caring and patient in public.  At home she can be that way too, but she is also a normal big sister.  She gives her guff, she won't let her get away with anything, she watches out for her, but at the same time she will catch her off guard with a tickle, a joke, spontaneous wrestling or a long hug.

Haley loves her Big Sis too.  She always wants to include her in what she is doing, even if it isn't something that her Big Sis would be that interested in.  Haley wants to share.  She listens to her and she communicates with her.  They have always had their own special language.  When they were small and I couldn't tell what Haley was saying her Big Sis often knew.

I am thankful for the ways that they each reflect our personalities.  They can both be silly or serious when it is appropriate.  We can joke with them.  They can be "typical teenagers" at times, but when we call them on it they smile and go right back to being the little girls that we have been raising.  At other times they both can be so mature that I am taken aback.  I have to remind myself that they are young.  I also see some of the not so nice qualities from our personalities in them.  It is at those times that I take stock and remember to act differently around them because I see how we can influence them.

I love having two very different girls and I love that they have some things in common.

They are both friendly and fun-loving.

They are both strong-willed and stylish.

They are both kind and caring.

They are both quick-witted and smart.

I am very grateful for them.

~Haley's Mom, Thankfully

What are you thankful for today?

I Must Confess

Mom confession:  Some days I am so thankful that I can put my daughter on that school bus.

Today was one of those days.

Haley has been short tempered all weekend.  She spent a good portion of Sunday growling (?) groaning (?) moaning (?) bitching under her breath.  It is hard to describe the sound that she makes, but it is not hard to discern the intent.  She is not happy with the status quo and she wants everyone in the house to know about it.

I have no idea what set her off.

Everything seemed fine as far as I could tell.  The thing with her is that she can't tell me the reason and it could be that she doesn't feel well, I did something to upset her, I didn't do something that she expected or maybe she just got up on the wrong side of the bed. 

There is only one side, by the way.

So today didn't seem to be any different.  She woke up a little earlier than I did and was sitting at her laptop when I came downstairs.  I went in to say good morning and give her a little hug and a kiss and I got a grunt.

When I asked her to come in and eat her breakfast she did, but I could tell from her body language that it was against her better judgement.  I had to remind her to take bites all through breakfast.  It was getting close to the time that she needed to get dressed and she still had several bites to go.

We went upstairs to get her dressed.  She was very annoyed through the entire process.  Then came the time when I wash her glasses and they were not on the counter in her bathroom like they usually are.  I went in to her bedroom and looked on her dresser.  Then I asked her if she knew where her glasses were.  Her hands immediately flew up to her eyes and then she said "EYES!"   

I said "I know they are not on your eyes.  I can't find them.  Do you know where they are?"  A question like that - that specific question - never gets a good response.

I went downstairs and looked at the desk where she spends most of her time.  I didn't see them so I went back upstairs and looked in all the same places again, even though I had already looked there and knew full well that they were not there.

By this point Haley was a mess.  She was angry.  She kept touching her eyes and screaming "GLASSES!"

I followed her downstairs saying "You will just have to go to school without your glasses today."

She sat down in the chair at the desk with her laptop on it in a very huffy mood.  I started sorting through the piles of doll clothes, horses and matchbox cars that were strewn all over the floor under the desk.  She said "Glass!"

I said "I know Haley, but I don't know where they are!"

She bent over and reached under the desk on the opposite side of the chair that I was on and then turned and handed me her glasses.

I said "Thank you for getting me your glasses." 

Then I walked in to the kitchen and washed them.  I handed them back to her and she put them on.  All the while she was making the growling (?) groaning (?) moaning (?) bitching under her breath sound.

So when the bus came, I was happy to put her on it.



~ Haley's Mom

I am participating in 31 for 21 Blog Challenge this month. The challenge I have accepted is to blog every day in October to raise awareness for Down Syndrome. Learn more about Down Syndrome at the National Association of Down Syndrome.

Mini Me

Haley has a really short haircut.

I have been getting her hair cut short in the summer for a while now.  I usually let it grow out the rest of the year.  I call it her Summer Cut.

This year she got a summer cut and then in the fall I had it cut even shorter.  I was actually thinking that it looked really cute and it was really easy to care for, so why not?  I really don't think Haley cares.  Actually I think she likes it when I spend as little time as possible fussing with her hair.

I didn't think anything of it.

And then the comments started.

My hair is really short too.  Haley and I have very different hair though.  Hers is really curly and thick and mine is very very thin.  I actually have mine cut short because it was looking way to thin to me and also I was tired of it in my face.  I didn't like it in my face when it was windy or when I rolled over in bed or when I looked down.  

I was just tired of it so I asked my stylist to give me a pixie cut.

It is the sixth time in life that I have had a pixie cut.  I really like it, then I grow it out for a few years and then I get it cut again.  It has been a while since the last time.  I had to really convince my stylist to cut it short, she had never seen me with short hair.  I don't know what her hesitation was.  I think she thought that I would be shocked or disappointed.  I finally told her that I had had it that short several times in my life and I knew what I was doing.  So she cut it.

When I took Haley in for her summer cut this year I said what I have said before - I wanted it cut about an inch all over her head.  Our stylist didn't really do that, it wasn't as short as I wanted it to be.  I still had to fuss with her hair quite a bit to make it look good.  And it blew around in the wind.  It needed to be shorter.

That is why I had her stylist cut it even shorter just before school started.

She got a trim again not too long ago.

A friend of mine told me the other day that she never had seen the resemblance between Haley and I, but she sees it now.  (Now that we have the same haircut.) 

So apparently, without even trying, I have created a Mini Me.

That was really not my intention.

~ Haley's Mom

I am participating in 31 for 21 Blog Challenge this month. The challenge I have accepted is to blog every day in October to raise awareness for Down Syndrome. Learn more about Down Syndrome at the National Association of Down Syndrome.

This is Challenging

I have taken on the challenge of 31 posts in October, which has 31 days.  That means a post each day.

It really is challenging.

Life is busy and complicated around here.  I know full well that we are not the busiest people in the world, but for me we are plenty busy.  It is not even so much what we are doing on a daily basis, it is that each one of the four people in this house has their own busy-ness.

I have a list that just seems to be getting longer of things that I need to do.  I have my job and my volunteer work.  I have the house to take care of, which means cleaning, planning, shopping and cooking.  There are even some things that I want to do, like go Fall school shopping with each of my daughters, read, knit and watch some of the shows that are filling up my DVR.

Haley's Dad works from home so he is busy all day and then he has a set list of chores that he does.  He rarely wavers from that list.  He also is planning for an event that is coming up.  He is in charge of a large part of it so he is busy with that.

Haley's Big Sis is a Senior in High School.  That, I am learning, is a job in itself.  She has Grad Night stuff.  She is choosing colleges that we will soon visit.  She is planning to play Basketball again this year so she is training for that.  And she has her classes that have homework and projects, so we need to go shopping for materials.

Haley is no exception.

When she gets home from school she has a routine that she follows.  It is one that she has made up for herself that she does not like to waver from.  I seem to be a big part of that routine.

She gets all out of sorts if I am not the one that gets her off of the bus.  I have been out running around a lot this week and my husband has been home for Haley when school is over.  I have not been home when Haley gets home at all this week.  I told him that I might be late again.  He said it would be fine, but he added that Haley wouldn't like it.  

I said "Really?  What does she say?"

"Oh, she doesn't say anything." he said.  "I can just tell that she doesn't like it."

I have an idea why.

When Haley wants something she knows that I will do it for her.  She likes to have drinks and snacks and she wants to watch DVD's.  I bet she has to work a little harder to get her Dad to do the same things for her.

So it seems like there have been a lot of things happening at our house all week at the same time.  It has felt a little crazy.  So it has been a challenge for me to have time to sit down and write a blog post.  If you have noticed, I have been posting quite late at night.  

That seems to be the only time that I can sit down and collect my thoughts.

I actually really like being challenged like this.  I think it is stretching my creativity.  I just need to work on planning a little better so I don't feel rushed at the end of the day.  Maybe by the end of the month I will have figured out how to do that.

In the meantime I hope you are enjoying the consistency of a post a day and I hope I can keep it up.

~ Haley's Mom

I am participating in 31 for 21 Blog Challenge this month. The challenge I have accepted is to blog every day in October to raise awareness for Down Syndrome. Learn more about Down Syndrome at the National Association of Down Syndrome.

Attention

When Haley wants me I want her to say "Mom."  I really do.

I ask her to do that.  I talk to her about it.  I even ask her to repeat after me "Mom."

She won't do it.

In her entire life I only remember her doing it once.

She does know how to get my Attention though.

She does it by making sounds.  Sounds that annoy me.  I have to answer those sounds.  Occasionally my husband, in his most helpful way, tells me to ignore them, but I can't. 

I just can't.

The sounds that she makes are sometimes whiny, sometimes frustrated, sometimes pathetic, sometimes insistent, almost always incessant.  I just can tell that she needs something.  That she needs help.  That she needs me.

I know that because if she were to ask for help, she wouldn't ask her Dad or her Big Sis.  She would ask me.  But, she doesn't ask me.  She just knows that I am the one that will respond.  It is kind of a vicious cycle.

There are other ways she gets my Attention.

She sometimes brings me things.  Things that she wants that she can't quite do for herself.  She is trying to be helpful.

I have been making her cocoa using Nestle's Quik and Rice Milk.  The other day we ran out of Quik.  She knew that.  She went to the cupboard and brought me a box of Keurig coffee cups.  I just smiled at her.  She said "I want coffee please."  

Well, that is one solution.

Sometimes she just wants my Attention, just because.  She likes to show me the things she finds on the computer.  Sometimes it is something on the internet, sometimes it is a picture from our own files.

The other morning we were sitting at the kitchen table.  We had both finished our breakfast.  I was reading the paper and drinking my coffee and she was on her laptop.  I must have been engrossed in what I was reading because she was getting impatient with me. 

It would seem that she had been trying to get my Attention to know avail. 

She snapped her fingers at me. 

I immediately looked right at her.  She then pointed at the screen. 

That is her go to gesture now.  If I don't respond right away she snaps her fingers at me. 

Today she did it every time she wanted to show me something.

Again I asked her to just say "Mom."

I wonder if she ever will.

A Bit Groggy

Last week for Spring Break we went to Montana to see my family.  

Haley got to hold her one year old cousin on her lap and give her some hugs.  She also got to play with my Mom's cat Scooter a lot.  Scooter is normally a very anti-social cat, but since my niece arrived on the scene he seems to appreciate the companionship of people a lot more.

It was nice to visit my Mom for several reasons, not the least of which was I got a full night's sleep almost every night.  Haley didn't wake me up in the middle of the night at all.  She slept on a mattress on the floor right next to me.  

I don't know if that is why.  

Maybe it is because the room we slept in is very dark at night, or because there are no sounds outside.  Other than the occasional train that goes right by my Mom's house.  

Whatever the reason I really enjoyed it.  

At dawn when some light finally came in to the room Haley would wake up and go downstairs quietly on her own.  She had her laptop set up on a small desk in the kitchen, right next to the space heater.  She was perfectly happy.  Her Dad usually got up shortly after she did.  I slept until I heard my Mom get up (there is something about her voice, even at this age I cannot ignore it.)  I would look to my right and my husband was gone, then I would look to  my left and my daughter was gone.  I never heard either one of them get up.

So, now that we are home things have changed a little bit.  Haley did sleep through the night a couple of nights.  She has been getting up when my alarm goes off or just before it goes off.  She comes in to my room and I look at the clock.  I figure it is close enough to the time to get up and I tell her she can go downstairs.  

That has happened several times.

So this morning, when she opened the door to my room, I glanced at my alarm clock.  I said "You can go downstairs, Haley."  She quietly shut the door.  I laid there for a second and then I looked at the clock again.  I jumped up and caught her half-way down the stairs.  I said "I'm sorry Haley, it is not time to go downstairs.  Come back up."  

She turned and headed back up the stairs.  As she climbed in to bed I apologized again and told her that sometimes (especially when I am a bit groggy) a two can look like a five on my alarm clock.

I am so glad that I looked again.  She would have happily sat downstairs playing on the computer for three hours before I finally got up, but she would have been the one that was a bit groggy during school.

Comments

I enjoy reading blogs.  I read blogs by mothers of children with disabilities, blogs by single fathers, blogs by women who write for a living and blogs by women who have made their blogs their livelyhood.

I have noticed something.

People comment on blogs.  Sometimes I feel compelled to comment as well.  It is the way that the blogosphere communicates.

I don't get many comments on this blog.  I don't know why that is.  Maybe I haven't made it easy enough.  I am using blogger's commenting system.  There are others.

Maybe what I say doesn't prompt people to comment.

I actually get quite a few comments through facebook and I am thrilled when someone shares what I have written on facebook.  That is quite a compliment.

I also have several friends that read this blog and tell me in person how much they enjoy it, how much they have learned about Haley and how much they appreciate my sharing her adventures.

But in general, dear readers, you don't comment.

So when I get one it makes my day. 

For the most part the comments I have recieved have been positive.  I haven't gotten any spam that I am aware of, which is great.  I do monitor my comments and I don't publish some of them.  If you commented on this blog and I didn't publish it, it was probably because you mentioned my real name or the name of Haley's sister.  I try to keep personal things off of this blog to protect Haley.  I still appreciated the comment though, so thank you.

I just wanted to share with you how much the comments that you leave mean to me.  I truly do enjoy reading them and I try to respond. 

Thank you.

The Finishing Touch

After the girls left the house on Monday I got busy decorating the house for Christmas.  I decorate by myself.  I had two fewer hours this year than I have had in the past. 

I almost got done.

The problem is that I never decorate the house exactly the same way.

I take pictures of the decorations every year.  I have learned that although I enjoy being creative, when it comes to decorating sometimes I get frustrated and I want to get done quickly.  I took a first run at it and everything looked pretty good, but I wasn't happy with a few things.  So I looked at the pictures from last year. 

I had failed to take pictures of some areas, but luckily Haley had taken a few *cough* dozen - so I could piece it together.

You might think that I could just put things up the same way every year, but I can't.  The decorator in me wants to play.  I had to keep telling her that she didn't have time.  I am racing against the clock.  I usually like to decorate the whole house and have all of the boxes put away before Haley gets home.

I didn't make it.

I didn't even get the tree up.

Haley immediately knew something was up when the bus pulled in front of the house.  My husband had put the giant wreath above the garage door.  So she came running.  She saw the front door and said "Oooooooo!  Christmas!"

She proceeded to walk around the house looking at everything, pointing at everything and saying "Ooooo..."

I asked her if something was missing.  She didn't bite. 

"Do you see a tree?"

She walked around the house again.

"Do you think I should put up a Christmas Tree?"

"Yeah." she said.

I got the tree out and put it together.  She got out the star.  I explained to her that I needed to put the lights on it.  As I went through the lights to see which ones would light up this year she grabbed a set and left the room. 

Pretty soon I could hear her Dad from upstairs saying "Take those back down to your Mom."

She brought them back and then stood and watched me for a few minutes.  Then she went in the family room and put one of the Christmas videos in that I had stacked on the floor next to the TV.  I thought about putting them in the cupboard for her to find, but I figured we were in for a marathon anyway I might as well make it easy for her.

After I got the lights and the garland on the tree I had to make dinner.  I also know from experience that I cannot decorate the tree by myself.  Haley's Big Sis wants to do it, so I left it for her.

After dinner I sat down on the couch.  Haley brought me the star for the tree.  Her Big Sis was playing a video game.  She told Haley we could decorate the tree when she finished the level she was on. 

Haley left the room.

She had occupied herself by playing on the computer.

We came in to the room and Big Sis plugged in the lights.  I put on some Christmas music and we started decorating the tree. 

Haley had the star. 

We showed her how to hang the ornaments.  She put one the tree and and that was enough.  She wanted the star on.  I told her she had to wait.  The star perches on the top of the tree in a very precarious way.  It is probably the heaviest thing we put on the tree.  If we were to bump the tree while we were decorating it the star would fall off.  I knew that Haley didn't understand that. 

She didn't like to wait, but I know that if the star fell off the tree she would like that even less.

Finally we finished.

Finally the star went on.

I am still not done, but it is good enough for the first day.  I will work on the house some more when the girls are in school.

Then I will play.

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.

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.

Mama does not dress her funny

"I am not sure that Haley should dress herself," her Big Sis said.

She has a point.

I have made it my mission for Haley to look good since she was very small.  Of course, how a baby dresses is entirely up to it's parents.  Then when they are toddling around they are still very much looking the way that their parents want, mainly because they are still buying their clothes.  At a certain age kids learn to dress themselves and they also learn the combinations that they like.  That is a fun stage. 

I have seen a little girl wearing a cowboy hat, striped tights, rain boots and a tutu.

Not Haley though.  I have dressed her for most of her life.  Literally. 

She has only recently learned to dress herself and she still has some issues with it.  I made an effort last year to purchase only elastic waist pants for her so that it would be easier. 

She is very interested in fashion and she is a bit of a clothes horse. 

She has an advantage too.  She has gotten hand-me-downs from her Big Sis all her life and Big Sis has pretty good taste.  I have had to nix a few things before they made it from her room in to Haley's room though.  Namely things that didn't really fit, things that bordered on inappropriate for her - age wise, and things that just didn't seem like Haley.

Haley started picking out her own clothes many years ago.  I would open the "top" drawer of her dresser and ask her to pick a top or I would ask her if she wanted to wear pants or shorts.  After those decisions were made I would finish putting an outfit together.  I would make sure it matched.

I decided a long time ago that Haley would always look good.

My child would not have; a snotty nose, dirty clothes, disheveled hair, food on her face, messy glasses or clothes that don't fit.  She is at a disadvantage in life already.  I was not about to handicap her any further by allowing her to look like she was not cared for.  I wanted her to look good.  To look loved.

I am sure you have seen kids that don't look loved.  They walk around looking like no one cares what they look like.  That was not the way my child would look.  I care.

Haley doesn't.

If an outfit came to her as an outfit she will keep it that way, but if clothes come to her as separates that is how she treats them.  She is usually kind of picky about the top.  Then she opens her "bottoms" drawer and pulls something out.  It might not match.  It might not go.  It might really clash.

Sometimes I let her wear it - on the weekend - or - in the summer - if we are not going anywhere.  A lot of times bottoms don't make it the whole day anyway. 

If we are going somewhere I gently suggest a different choice.  I don't make a big deal out of it.

Today Haley was standing at her bedroom door when I came out of my bedroom.  I asked her if she was going to get dressed.  She said "Yeah."  I told her I would help her with her bra and then she could get dressed.  I did that and then I went back in to my bedroom.  A little while later I walked in to her room and she was on her knees with her face on her bed.  She heard me come in and looked up at me.  She seemed a little upset. 

"Do you need help with your shorts?" I said. 

"Yeah."

They had a zipper and a button that needed to be done up.  I did that and then I looked over at her bed.  A shirt was on the bed that did not go with the shorts.  It was another pattern and another color. 

I said "Haley, you have a nice blue shirt that looks really good with those shorts, lets get that one for you." 

She let me.  She doesn't care.  I do.

That Sinking Feeling

Usually at this time of year I start to get excited.  Back to school has been a relief for me in the past.  I don't feel that way this year.  I have a sense of foreboding and dread, deep down inside me.  I don't know why.

It started about a week or so ago.  I just started feeling strange.  I couldn't put my finger on it.  After a couple of days of feeling that way I decided to think about it, I wanted to discover the reason for the feeling.

After much thought; this is what I came up with.

This summer has been fun.  This is the first summer that I didn't feel trapped inside the house trying to entertain my daughter.  I know that sounds horrible, but that is the way my summers usually feel.  I like to be busy and during the summer most of the activities that keep me busy stop. 

I have free time, but for me free time isn't really a good thing.

That didn't happen this summer.  This summer I had something to do almost every day.  I had to take my oldest daughter to the zoo and back twice a week.  I had a part time job twice a week.  I had this blog to think about.  My time was reduced because of those things so I had to become more efficient in other things, like housekeeping. 

And Haley can now entertain herself.

Of course that is the best thing.  That is really the thing that has made the difference.  Even the very rare times that she got to use the wading pool in the back yard were not as big of a deal as they used to be.  It used to be a huge production when she wanted to swim.  This year we put water in the pool, Haley gets into her swimsuit, she splashes for a little while and then she tells me she is done.  Simple.

So, I still didn't know why I feel dread when I think about school starting again.  I will have more time for myself, but I will also have other things to occupy that time.  I don't think it is about me. 

I think it is because Haley is making another transition.  She will be going to a new school, a bigger school, a school with bigger kids.  She will have a new teacher and a whole new set of requirements.  I don't think it will be bad, but I always got nervous when I had to change schools and I actually think I am projecting. 

Haley doesn't know what is happening.  We tell her that she will be going to a different school, we have driven by it, we have gone in and said "This is where you will be going to school this year."  I am not sure she understands and she certainly doesn't dread it.

I guess I am doing that for her.

If my child didn't have special needs...

If my child didn't have special needs, I wouldn't celebrate every tiny little accomplishment.  I would be proud of her, but I wouldn't truly celebrate like I do.

If my child didn't have special needs,  I wouldn't notice the accomplishments of others.  I feel like my radar is on, all of the time.

If my child didn't have special needs, her habits would be more annoying than endearing.

If my child didn't have special needs, I wouldn't appreciate the differences between my two children quite as much.  I think I would notice them, but they wouldn't bring me as much joy.

If my child didn't have special needs,  I would be different.  I would be more selfish, more self-centered, more career oriented, more impatient, more demanding, more short-tempered.  I know this because that is how I was before I had her.

If my child didn't have special needs, I wouldn't love her any more than I already do.  I love that little girl with all my heart and all my strength.

Thank you Ellen for the inspiration.

If You Ask Me

I have a new job and I am loving it.

I have wanted a job for awhile, but I have been worried that I couldn't pull it off.  When the girls are in school it seems doable, but then I think about summer. 

How could I leave them in the summer?

A job opportunity came up a while back and it seemed perfect, the adminstirave assitant position at my church.  My husband and I talked about it very seriously, but there were some concerns.  Haley's sister is my go to sitter, but I don't want to take advantage of her and expect her to watch her sister every day. I have a feeling that when they are older her sister will take on a lot of responsibility for Haley.  I don't want that to happen too soon.  The more we talked the more we realized that it just wouldn't work.

Things have changed since then. 

My husband works from home full time now.  I can't really expect him to pay attention to Haley because he is working, but it makes it seem more possible because at least her can get her off of the bus. 

The church hired an adminstrative assistant and she is great.  She is on maternity leave now, she had her baby a couple of days ago.  I was asked to be an interim adminstrive assistant part time.  I share the job with another friend from church, I work two days a week.

I have asked Haley's Big Sis to be responsible for her while I am gone.  Their dad is home, but they are supposed to act as if he is not there.  They are not to bother him, but he is there if they need him. 

I have worked five days now and there are some issues that have come up.

I came home one day and gave Haley a hug, she had really bad breath.  I asked her if she had had anything to drink.  I looked around and didn't see any glasses that looked like she had been drinking out of them.  I asked her sister.  She hadn't asked for a drink.  That is so odd, because she asks me for drinks all day long.

There was food on the counter.  Haley gets leftovers out of the fridge and puts them on the counter sometimes, that means that she is hungry.  I asked if she had fed her. She said she had had lunch.  Haley sometimes eats two or three "lunches" a day and she always asks me for snacks.  Apparently she is not doing that for her sister.

Her sister is taking her to the bathroom and changing her.  That is good, but I have asked her to make sure to offer snacks and drinks.

I think she is doing a good job of taking care of her, I just find it interesting that Haley doesn't ask for as much from her as she does from me.

I wonder what that is about?

I've Done It Again

When we got back home from our family vacation in Montana Haley immediately talking about going to visit Grandma and Grandpa.

We had been talking about visiting them, when Haley wasn't around. 

We decided that we should talk to them about it the next time they called.  We didn't want Haley to hear the conversation because we knew it would be awhile before we could visit and Haley doesn't really understand the concept of time.  Her Big Sis warned us - she said that Haley has a "Spidey Sense" about these things.

Grandma and Grandpa called at the regular time.  Haley got to "talk" to them, like she usually does.  Then I took the phone from her and handed it to her sister.  I told her that her sister wanted to talk to Grandma and Grandpa and then I asked her if she needed to use the bathroom.  It gave us enough time to verify the dates and get things worked out and then Haley got the phone back when she was done.

Everything seemed to go off without a hitch.

The next day when I walked into the kitchen Haley got out the dry erase markers and wanted me to write Grandma and Grandpa's house on the calendar.  I assumed that someone had told her.  It was almost August so I thought it was time to change the calendar anyway.  I cleaned July off the calendar and started adding August.  I put the visit to Grandma and Grandpa's on the calendar.

That started it.  She wanted to pack.

I tried to explain to her that it would be several weeks before we would go.  We counted the days.  I took her finger and pointed to each day as we counted.

It was no good.  She is like a broken record.  She will not stop.

Later in the day I asked her sister to help her make a paper chain like they do at school when they are counting down to an event.  That seemed to help for a little while.

The next day she was at it again.  She says she wants to "Go."  It has gotten to the point that I have to avoid that word all together.  If I use it in any context she immediately thinks I mean that we are going to Grandma and Grandpa's. 

I explain the situation to her again.  She gets mad. 

She has been having "two year old tantrums," actually throwing herself on the floor kicking and screaming.  Every morning we go through it again, she thinks that each morning we wake up it will be the day that we are going to leave.  We have spent the last three days with a very unhappy child and I am scared.  I understand time. 

She may not be counting the days, but I am.

Find Us On Facebook

When I began this blog about Haley in April of 2010, part of the reason that I decided to write a blog was because my husband thought it would be fun if Haley had a facebook. 

When he suggested it, I just laughed.  I know she uses the Internet, and she uses it well, but of course she wouldn't be able to post, or like or interact the way that other people do on facebook. 

He thought it would be fun to have a web presence for Haley that would feature the things that she likes and I agreed.  That would be fun, but I was not about to sign her up on facebook.

I read several blogs at the time and I had been toying with the idea of writing my own blog.  I thought that people might like to read my unique perspective on life, but I wasn't sure what form my blog would take. 

My husband and I had several discussions about it.  We tossed ideas back and forth.  Then one day it just came to me.  "What if my blog wasn't about me, what if my blog was about Haley?"  Once I had that thought the blog post ideas just started flowing.  I wrote them down.  I filled two pages.  I thought "I can do this!"

So this blog was born on April 27, 2010 and the very first blog post was Money. One. Two. Three.

I posted it to my personal page and people really responded to it.  I have gotten great responses from my friends and my family ever since.  I am happy that people like to read what I write, but I don't fool myself.  I know what people really like are the stories about Haley.

So I have decided that maybe it is time that Haley have a facebook. 

The facebook page for this blog will include blog post updates as well as what Haley's likes and the occasional incident or quote that won't make it into a full post on this blog.  So check it out.

If you are on facebook click on the link at the right of this website to "Like" our facebook page.  If you are not on facebook, what the heck are you waiting for?  Now is your chance.  Sign up and then "Like us!"

If you know me please respect my decision to write this blog in anonymity.  I have done it for the safety of my daughter.  If you refer to me or my husband on our facebook page please stick with Haley's Mom and Haley's Dad.  Thank you.