Wednesday, March 30, 2011

Encouraging Words

Amazingly I have spent most of the last three days sitting here working on the computer and yet I haven't sent a single blog post...

I am really enjoying a new sense of freedom and empowerment that comes from a child who understands me and responds accordingly.  I am able to say things like "Go to the bathroom, please."  or "Go upstairs and get dressed." or "Pick up your Barbie clothes, please."

And she does it!

It started out simply enough.  I asked Haley to go to the bathroom.  She walked into the bathroom, turned on the light and shut the door.  I stood there with my mouth gaping open staring at the closed door.  I listened.  I heard the sound of the lid being lifted.  I heard the sound of her pull-ups being pulled-down.  Quiet...then I heard a little tinkle, tinkle.  I was getting excited...then I heard "Done."


She wasn't really "done," but it was encouraging.

From the other side of the door I said "Do you need help?"  She said "Yeah."  So I went in.  I helped her wipe and take her pants all the way off and put on a new pull-up.  I think if the pull-up hadn't been wet she would have just pulled her pants back up.  I know she can do that.

The other day (on a whim) I asked Haley to go upstairs and get dressed.  I went about my business downstairs.  Time passed.  Then from the top of the stairs I heard her Dad praising her and asking me if I knew what she was doing.  I had some idea of what she was doing, but I went upstairs to see what was going on. 

Haley was wearing pants. 

That's it.  She was carrying her bra and her top and she was heading down the stairs to find me.  I think my husband was a bit taken aback by the situation, but I was thrilled.

I have been using my new found freedom a lot lately.  Sometimes it works, sometimes it doesn't.  When it works it is really great!

Thursday, March 24, 2011

A Passenger

Haley just walked up to me softly giggling and holding her elbow.

I didn't think that she was hurt, because she seemed so happy.

I focused on the elbow that she was presenting to me.

There was an ant crawling on her elbow and up her arm.

I laughed and grabbed it and gave it a quick squish behind my back.

"Haley, you had a passenger."

She laughed and walked away.

"Passenger...," she said.

Wednesday, March 23, 2011

18 and Life

Last night my husband and I went to another class in the Transition Series to learn about Trusts and Guardianships.  Haley's Big Sis was at Drivers Ed so Haley came with us. 

She was very good, she sat there quietly.  She was interested in the presentation and the materials they handed out.  She brought a purse full of animals.  She even got cookies.

We learned a lot last night.

When Haley turns 18 things will change.  18 is a big age for anyone, but for Haley it will mean that we will have to become her Guardians because apparently it won't be enough that we are her parents.  There is a lot of legal stuff that goes on, it seems kind of strange at this point.  I understand the benefits and I understand the need to protect her.  Of course we will still care for her, but in the eyes of the world when she reaches that age she will become an adult. 

The wording is interesting:
"Adults are presumed competent to make decisions after age 18.  After age 18, parents no longer have legal authority to make decisions for a child unless there is a guardianship."
The Guardianship will protect the child concerning:
  1. medical treatment and care
  2. financial exploitation
  3. if the child becomes involved in the legal system

It is hard for me to imagine a time when we will not completely responsible for our daughter.  Especially the way she is.  She relies on us completely.  She would not survive without us.

A guardian is a person appointed by the Court to manage the affairs of a person who is incapacitated.
An incapacitated person is one who is at significant risk of harm because of a demonstrated inability to manage property or financial affairs or because of a demonstrated inability to adequately provide for nutrition, health, housing or physical safety.

That sounds like our daughter.

She will be 18 in a little over four years.  It seems like a lifetime away. 

I know that everything we are learning about is intended to protect her.  I know it is all in her best interest.

The Trust is a great thing.  The people that manage the Trust are doing a wonderful job.  They are there to protect their clients.

It is all good.

As we pulled out of the parking lot my husband and I were talking about what all of this means to us.  It is very strange.  He says we have plenty of time to make these decisions.

I feel like we don't

It feels immediate to me.  I don't know why.

Knowledge is power, but at the same time the more I learn the more concerned I become.

Monday, March 21, 2011

Oh Those Tubbies

I have a love/hate relationship with the Teletubbies. 

Haley just loves them.

First of all, what is up with the way they talk.  They are not really speaking English, they are not really speaking baby-talk, it is weird alien language that drives me crazy.  This show is intended for toddlers, I believe.  Kids mimic television we want our children to sound like

I like that there is a narrator.  I like that the narrator corrects them. 

I would like that job.

I like it when they dance.  When they fall down and their bottoms make funny sounds when they hit the floor.  When they slide up a slide.  When they are completely silly and get the giggles.  That is all fun.

There is a portion of the show dedicated to "the real world" of children.  The Tubbies tummies are televisions, and occasionally they receive feed from small children splashing in the pool, reading books or riding their trikes.  Believe it or not these real children are sometimes sillier than the Tubbies.

Haley loves it all.

And she does mimic them.  She even sort of mimics them correctly. 

It is a little disturbing.

Haley's favorite thing about the Teletubbies is the Noo-noo.  It is their vacuum cleaner.  The vacuum cleaner is efficient and sometimes vacuums up things that it shouldn't.  Haley gets a kick out of that.

Haley gets in a Teletubbies mood.  She watches it over and over again (like everything she likes.)  I, of course, have the shows memorized.  They are short and we only have two of them.  Haley also knows how to find them on YouTube, so there is that.

I find if I let go of my reservations and my inhibitions and just go with it, it is more fun for both of us.  So quite often you can find Haley and I dancing around the house while the Tubbies are dancing on the screen.

Thursday, March 17, 2011

My Morning Surprise

When I walked up to my desk this morning I was greeted with this.

Apparently my desk is now a bed for Haley's horses.

And dolls.

Wednesday, March 16, 2011

She is Listening

The other day I was watching television in the living room and Haley walked in.  Her stable was in the middle of the room.  She picked up a basket full of horses and then reached for the stable with the other hand.

"Haley, you won't be able to carry both of those,"  I said.

She tried again.

"Haley, take the basket now and then come back for the stable."

She stood and thought about that for a few seconds and then she turned and walked out of the room.  A few minutes later she came back and pointed to the stable and grunted.

"You can pick the stable up now, you can use both hands."

She looked at me.  After a beat she bent down and picked up the stable.  She turned it and adjusted her grip on it and started to head out of the room.

"See Haley, I told you you could do it," I said.

She said "Good Job."

Tuesday, March 15, 2011

What I Heard

This weekend I was in a bathroom stall and I heard a tiny voice in the stall next to me.  The tiny voice spoke in a complete sentence. 

I imagine that her mother had heard her do it before.  I imagine that she likes to hear that tiny little voice.  I imagine that there are times when she doesn't really want to hear that tiny little voice.  I imagine that she had no idea that hearing that little voice speaking, in a complete sentence, saying something so mundane as "I can go potty by myself." would make someone like me cry.

It did though.  I sat in that stall and cried.

That hasn't happened to me in a long time.  I've done it before.  Not only when I hear a tiny little voice speaking in complete sentences. 

Sometimes I cry when I see a tiny little person running on tiny little legs.  Haley didn't do that.  Haley walked with a lot of effort and not until she was three.  She never walked on her own tiny little legs.  By the time she was three she was actually pretty tall.  She didn't really toddle, like toddlers do.  She walked in her own special way.  She had braces on her feet and ankles, they made her walk differently.  She wore them all the time.  And she didn't run.

So when I see a tiny little person running on tiny little legs it makes me cry.

I am used to Haley's voice.  I am used to the phrases that she uses.  I rejoice when she puts words together.  Usually it is two or maybe three words.  I have meticulously trained her to put up to four words together.  When she wants something I make her say "I want _______ please," but it is stilted.  It sounds more like "I.  Want.  ________.  Please."  I have never heard her say something quickly like most everyone else does.  I want to.  Someday I really want to hear that, but I don't know if I ever will.

So when I hear the voice of someone who I know to be barely two saying something that Haley can't say, that Haley wouldn't say, it sometimes is too much for me.

I got over it pretty quickly.  I moved on.  I went about my day.

That was three days ago though, and I am still thinking about it.

Monday, March 14, 2011

What is Normal?

Haley is slowly returning to herself.  Getting back to normal.

She stayed home from school for three days last week with a cold. 

It started as a runny nose and a cough.  Then it became a quiet sad little girl and a cough.  Then it became a somewhat noisier little girl with an attitude and a cough.  Now it is a teenager who is almost back to her normal happy self and a cough.

My happy child likes to talk... and cough
and laugh... and cough
and make disgusting sounds in her throat... and cough. 

She doesn't seem to understand the connection.

She went to school on Friday.  Maybe she shouldn't have.  I don't know.  They said she seemed sleepy.

On Saturday her Big Sis wanted to go to the mall.  Haley likes the mall.  I asked her if she wanted to go shopping.  She said "Yay, shopping!" 

I let her lead me around the mall while her Big Sis and her best friend shopped.  We went into all of the stores that sell toys, cute little critters and girl clothes.  She got a couple of tops and several pairs of pants.  She really needed new pants.  I think she has grown another couple of inches.

She was hungry so we went to the food court.  She got her "usual" at Panda Express. 

We had a nice day. 

Haley's Big Sis is learning to drive.  I have been taking her out, or should I say, she has been driving me all around town, for the last couple of weeks.  She drove to the mall.  Haley didn't seem to think it was unusual to have her sister driving and her Mom in the passenger seat.

Yesterday we wanted to go to IKEA.  Her Dad and I and her sister were talking about what was involved in driving to IKEA.  We were all ready to go with our shoes and coats on standing in the garage, talking.  We were trying to decide if Haley's Big Sis was ready to drive across the state line. 

Haley was impatient. 

She started to get into my car (by the way, I am so proud of her that she can open the car door and get in by herself.)

We all stopped talking and her Dad told her that we were taking the Yukon. She shut the car door, opened the Yukon door and got in and shut the door.

We all just looked at each other.

Haley usually sits in the seat behind the driver. That is just the way it is. It is easier to get her in and out of the car that way. She got in on the passenger side because that was the side she was on, I guess.

We decided that her sister wasn't quite ready for the drive we were about to take, but we thought that she should ride shotgun so she could at least see what was involved. So I got in behind the driver (Haley's Dad.) 

It was like musical chairs.  We were all in the wrong spots.  Well, except for her Dad, I guess. 

Haley didn't seem to think anything of it.

I think she knew exactly what was going on even though we never took the time to explain it to her.

She amazes me every day.

Tuesday, March 8, 2011

No Mo Jo

Haley stepped off of the bus yesterday with a runny nose and a cough.  She also had a note with her telling me that they had started to notice the change at school.

I decided not to take her to Yoga.  I figured that the way she looked the last thing that she would want to do is hang upside down.

She sat herself down at the laptop on my desk and that is where she stayed the rest of the night.  She didn't want to eat dinner, but I did get her to eat a little applesauce.  By eight o'clock she was done.  I had taken her to the bathroom and she had a coughing fit that left her retching. I asked her if she wanted to go to bed and she said "Yeah."

She looked so lost and sad and tired in her bed.

I went to bed knowing that she wouldn't be going to school today.  I also had a hard time falling asleep because I didn't know how long she would be able to sleep.  I hate it when she is sick.  She doesn't know what is happening to her and she doesn't know how to tell me what she needs.

I woke to sounds of her coughing at 5:00 a.m.  I got her some water and some medicine and said a little prayer for her.  I didn't hear her cough anymore and I eventually fell asleep.

This morning I didn't wake her.  She finally got up around 8:45 a.m.  She came downstairs and sat on the couch.  I asked her how she was feeling and she said "Better."  I asked her what she would like to watch and she said "Tarzan."  I gave her something to drink, but I thought I would wait for her to ask for food. 

When Tarzan was over she brought me the Spirit DVD.  She got a pillow and a blanket and wanted to lay down and be covered up.  Then she said "Shadow."  I got Shadow out of his room and put him on her lap. 

That was the last I heard from her until Spirit was over.  I was reading a book in the other room when I heard "Again."  I started her movie again and went back to read.

Her Dad came down to the kitchen to get some tea.  He looked at her and said "Haley's lost her Mojo."

Haley is normally a very active person, she is usually up at the crack of dawn ready to take on the day.  The way I know she is really sick is when she is like this.  She just lays there, still.  That is not normal.

At lunchtime I asked her if she wanted some eggs.  She said "Yeah."  I made them and tried to feed them to her, but after two bites she said she was done.  She felt hot so I gave her some more medicine. 

I sat down to write this post about a half an hour later.  She started mumbling.  I went in to check on her and she wanted something else to drink, she said "Smells good."  Which to her means it tastes good.  I think the medicine might be starting to work. 

I can hear her talking to the television which is a good sign.

Friday, March 4, 2011

Baby Steps

The blog post that I wrote yesterday was not the one I intended to write.  I guess I needed to write it.

This is the blog post that I meant to write yesterday:

Having been to several classes that were intended to help families and students prepare for life after graduation I have decided that I need to start asking a little more of Haley. 

If in fact she may some day be independent or at least be out in our community more she will need some skills that she doesn't yet have. 

I never meant for her to be totally dependant on me, it is just the way it has been.  I have been caring for her and doing things for her for almost fourteen years.  It is a bit hard for me to change at this point.

We try to get Haley to do things on her own, but it isn't easy.  She is a perfectionist and she knows how life is supposed to look.  It is hard for her to make mistakes, she gets so frustrated.  She will try things once and if it isn't just right she will give up.  If I keep pushing her she will shut down.  That is the way it has always been.  Lately she has been having some successes though and it really is gratifying to see that. 

She goes through learning spurts just like she goes through growth spurts.

Her teachers have been trying to get her to dress down for PE on her own.  They asked me for advice a while back and I suggested to them that if there was a chair that she could sit on while she took off her pants and put them back on that it might help.  They tried that and she has been doing really well.  I got a note last week that she dressed down for PE completely by herself for the first time.

At home I have been making her use the bathroom by herself.  I used to help her.  Like a couple of weeks ago, I helped her.  I have been backing away and asking her to do everything herself and you know what, she is doing it.

When she wants something to drink she usually brings me the container from the refrigerator.  I have talked to her about "using her words" instead for years.  Lately she has been.  She still brings me the container, but she asks me right away without all of the prompting. 

We ran out of juice yesterday and I told her that if she was thirsty she could have water.  I got her a glass of water and she drank some and then poured it in the sink.  She came to me an hour later and wanted juice again.  I told her that we still didn't have any juice, but that she could get some more water.  I tried to get her to put the cup under the sink and turn the water on, but she wouldn't do it.  I went over and made her do it, hand over hand.  She took a sip of the water and spit it out.  We have been working on spitting after I brush her teeth, I think those two lessons got a little mixed up.

She likes me to write words on the white board that is on the refrigerator.  I have started asking her to write them herself.  She recognizes letters so I figure she should be able to write them.  This one is a little harder, but she does know how to write her own name, so at least she can write H A L E and Y.  I am not giving up on this one.  I may be doing it for several years, but I am willing to keep at it.

This is what the board looks like today.

She wanted me to write Grandpa because she talked to him on the phone last night.  I told her to do it and I started to spell it, she started to get mad at me so I helped her write it.  Then she wanted to write Heather, I said "H", and she wrote H.  I said "E" and she wrote what looked like an A, the next letter is her lower case a, then she got mad and I helped her finish it.  Then she wanted Haley and I told her she could write that, and she did.  Then she wanted me to write Mommy.  I got choked up.  That was a first.  I wrote Chip and Chelsea for her about fifteen minutes later.

I am letting go.  A little at a time.  Baby steps.

Thursday, March 3, 2011

Letting Go

February was a busy month for me, I packed a lot in.  I tried to keep up with this blog during that time and I surprised myself at how well I did that.  Now that I am not so busy it has been hard for me to write.

I have been doing a lot of volunteer work for my church, I have been teaching Haley's Big Sis to drive and my husband and I have been attending classes that will help us be better parents to Haley.  Not to mention the fact that we added Yoga and Confirmation Classes for Haley this month.

In February my husband and I went to several classes that were put on by different groups to aid families of children with special needs.  They were all concentrated in February because some of them had to be postponed from their original dates due to weather.  We went to classes on Social Security benefits for people with disabilities and the value of employment for people with disabilities, my husband went to a class put on by a Naturopathic Physician and we just went to a class put on by Haley's first Occupational Therapist and her current Yoga instructor.

We have learned a lot, but what I feel I have learned the most is that I need to start letting go.

Letting go is not something I want to do.  I don't want to let go of Haley or her Big Sis.  I still feel certain that I will keep Haley with me for as long as possible, but I have heard from other parents and kids that they need the chance to be on their own.

One speaker that we listened to has a son who is now an adult and he does have his own home, but his parents are still very much involved in his life. 

He has had many jobs and has learned something from each of them.  He has a girlfriend and even though he will not be able to drive, he will soon get a car.  At first his parents weren't thrilled with the idea, but he was able to give them a list of the people who would be willing to drive his car for him. 

The fun thing is that he loves The Dukes of Hazzard and the General Lee, which is their car.  They know someone that can create a General Lee for him and that is thier plan.  Can you just imagine his reaction when he sees it?  It would be like giving Haley her own personal 4449 steam engine!

His mom talked about the ways that they have been adapting his surroundings, his jobs and his world so that he can be a functioning part of society.  He has friends that he does things with, he has a job that occupies his mind, he has money that he can use how he wants.

I don't see Haley living the way he does.

I know I may someday see things differently, but the Mom in me wants to care for her.  I know that this young man's Mom still cares for him, but in a different way.  She was quick to admit that she still spends sleepless nights worrying about him, but she has let him be who he is.

When  people talked about the value of employment what a lot of them said was that as parents we need to create jobs for our kids.  There are agencies and services available to help, but it has really been the families that did the creating so that their kids could have meaningful work. 

My husband and I have joked that a job that Haley could do would be to test computer games, because if someone could crash a video game it's Haley.  If a game designer just watched her play a game I think they would learn a lot about how they could make the game more user friendly not only for kids like Haley, but for anyone.

The other thing I found interesting about listening to other people's stories is the ways that they made life in the world easier for their kids.  The young man I have been talking about has different people that do things with him several times a week.

I could see a friend (or someone that we hire) coming to take Haley to the mall, she loves that or someone that can take her to a group yoga session.  These are things that I can see happening some time in the future.

Another thing that I realized is that Haley's Big Sis will probably not be around in several years so she is going to need someone that is close to her age to hang out with.

This is not something that I want to think about, but it is something that I need to think about.

The time is coming and soon Haley will be in High School. 

Oh my goodness...


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