Gotta get this off my chest....

On Sunday - in church no less, my teenage daughter overheard some (rude) teen boys making fun of Mary. 

They said she looks like "Frankenstein".

I realize they are "teenage boys", and that both words carry heaps of possible explanations for stupid behavior, but I can't excuse it!  At age 16, all human beings know how powerfully words can hurt.  

It hurt not only Mary, but the rest of us too. 

I really wanted to march over to his house and slap his pimply face!  There, I said it!!

After 27 years, I am still appalled by the amount of people who don't seem to acknowledge that Mary can hear. and understand. and feel. everything!   

On a more positive note, Mary's picture was in the newspaper.  See:   http://www.thespectrum.com/apps/pbcs.dll/section?Category=LIFESTYLE&template=archive&Date=20110207   

(It's  possible that the link won't work because we have the only online newspaper in the US that requires a paid subscription. )  Anyhoo, the reporter came to do an article about the Children of Hope Academy which Mary attends 3 hours a day.  They did a great job - lots of great photos and a nice long article, plus a plug for the 5K Fun Run on March 5th.  

We are having a better week also - more smiles and happiness.  She initiated going home a few days ago.  I got to the school, and on her own, she got her stuff and headed for the door, going out and looking for the car.  ANYthing she initiates is GREAT with me!!

Now that I've vented, I feel much better.

Why in the heck are my paragraphs highlighted??  Hmm...it is what it is. 

The Winter blahs....

A friend of mine has a blog (who doesn't have a friend with a blog?) and she made an entry last month about caring for her elderly and ailing mother-in-law.  

It touched something deep down inside of me.

Plus, I realized that there are people out there living with similar challenges to mine. 

It helps.

This past few months, my state of health has resembled a roller coaster.  One that instead of going high and back to ground level, goes low and back.  Even though I am doing everything I can to correct this situation, ( I'm not here to talk about my health, or my age) I have noticed that Mary regresses during the lows.  She is not making progress at this point.  

And, like my friend,  I wonder what to do.

Would she be better off living with someone who could take better care of her?

Does she resent the fact that I am not always there for her?

Why is she still hidden away in her little "box"?

Why does she refuse to smile?

Am I able to provide for her everything that she needs?

If I could just get someone to come in 1-2 hrs a day to help with her - oh what a difference that could make.  

Mary loves friends.

But they never come by anymore.

Mary has been ill the last 2 days.  Tummy ache, throwing up, fever.  

Today I drove her to school again, something that Dan has been doing for the last few weeks.  Mary was so grumpy looking.  She looks grumpy at me most of the day.

 

I have to admit that it makes me feel sad.

What is it that she needs?  

Since she won't talk, I can only wonder and anguish over that question.

Not so many years ago she was a happy, smiling, giggling girl, who would dance and talk jibberish.

We just HAVE to get that Mary back!!

It's Been Too Long!

Well, we made it through the holidays. 

While all the celebrations are fun, it really gets us 'off-track' with Mary.

Happily, she is still resilient and we are already getting back 'on track'. 

Mary and big little sister Jessica

Big Bro Danny home for Christmas and Mary - waiting for the 'opening of the presents'.

Mary is annoyed, I think, with whatever Loren is saying.  :)

Mary's got a present!!

Gingerbread men decorating.

 

As you can see, while we've maintained some good behaviors, Mary has found a few new debilitating activities.  One is always covering part of her face with her hand.  The other two are:  always touching her tummy - it looks like she's putting her hand in her pants, and laying her face against the wall.   I feel like we get rid of one and she finds two more!

Mary and Rachel taking a walk.

 On a positive note, Mary has gotten better at helping with chores and will now take the trash out to the trashcan all by herself!!

 

Halloween and a month in review....

Mary was a pirate for Halloween!!

Last time I posted, I was silly enough to state that I would post 2-3 times a week.

Why did I ever say that?
Maybe I thought I needed a new source of self-inflicted guilt.
Whatever caused my insanity, I have had a month of discouragement.
We have SOOOO far to go and we are moving along SOOOO slowly.
That is all I focus on sometimes.

So, I decided to take a look at the month we have just covered.

Milestones for October:
Mary playing basketball - started with making 4-5 baskets to making 30 baskets this past Friday.
Crawling: started with getting down on the floor for less than a minute, to crawling clear across the room last week.
Vocalizations: There has been much less yelling "no" as we try to respond better. She makes more happy noises now - even some humming.
Chores: Instead of refusing, she now happily helps doing kitchen chores. She helped me "fold" laundry last week. (ok - I did have to refold when she wasn't looking)
Initiating activities: Making very slow progress here. Wish I knew what I could do to get her to find something to do during down time. She just follows me everywhere.

Okay - that's all I can think of. I thought this would make me feel better. But I still feel so frustrated and impatient for faster progress.

I was looking at some old photos again - going through stuff.
There she was; Mary full of smiles and excitement.
I can't help wonder, what happened to that little carefree, happy girl?
It's like the Mary we knew, crawled into a box and shut it, then threw away the key.
How I wish I knew how to open that box again.

Good night!

A Cheeseburger and a Lamp Post

It's the odd, unexpected things that get Mary going.

I will try all the old stand-bys to get a smile out of her:
Sound Of Music DVD
Music from Mary Poppins or Shrek
Singing goofy songs in the car
Going to DQ for a Blizzard
Getting out the Uke for more silly songs
Dancing to Freaky Friday
Watercolors, puzzles and games
But none of them have been working.
She just seems to have been in a slump lately - with only glimpses of smiles.

Until last night.
It was both sisters' final soccer game of the season.
Plus it was senior night and her sister is a senior.
We had to be there early and do a bunch of stuff.
But she was content.
Finally, after the second game began we were able to get something to eat.
I ordered her a cheeseburger from the concession.
I fixed it up and set it on her lap with a napkin, then hurried back to get the rest of the burgers.
When I got into my seat, I noticed our friends sitting by us looking at and smiling at Mary.
I looked at Mary.
She was tearing into that cheeseburger with the full-out giggles!!
And she just kept munching and giggling!
She was so happy!
Now, you are probably wondering if I've been starving her. I don't.
Believe me, if I was, we'd have more pants that still fit her!
Through the rest of the game, she had a smile on her face.
She watched the game better than in the past, with little "zoning out".

After the game, I had to:
Take down posters
Gather my daughter's roses
Check on my daughter who got kicked in the face during the final 3 minutes of the game
Talk to the trainer and coaches about her injuries
Plan posters for the next game

Dan and Mary waited patiently.
While Dan was putting posters in the van, I was standing with Mary waiting for the girls.
Mary wandered a little over to a lamp post nearby.
I kept watching for the girls.
I heard giggling.
I looked at Mary and she was standing on the little cement base for the post, with her arms wrapped around the lamp post. She was walking around the base while holding onto the post. She was hanging from the post. She turned backward and wrapped one leg around the post. She was giggling and laughing (belly laughs!) non-stop. I haven't seen her so happy in YEARS! It took me right back to her 8-year old self. Happy and carefree.
She continued with this for several minutes while I watched and smiled.
A kind friend came to join me and side by side our hearts cheered on her joyful episode.

I have been praying for some of this(happy faces) for some days now.
A breakthrough.
An opening of the box she is in.

Prayers are answered in the funniest ways!

2 steps forward, 1 step backward....

Some days are like this.
Some WEEKS or MONTHS are like this.
We make progress - 2 steps. Then, we go backward - 1 step.
It's really hard not to get discouraged on the backward steps. When I compare where we are now with where we were 7 months ago, we have traveled far. I need to keep that in mind on days like this, when Mary kind of 'shuts down' and is so hard to reach.

Mary has been doing well at the following things lately:

-Following directions. For example; "Mary, clap your hands." or "Mary, touch your nose". Yep, I know these are things that pre-schoolers can do, but that's where we are. 8 months ago, Mary wouldn't respond to simple requests.
- Crawling. Now this isn't the 'crawling' on hands and knees. That is technically called 'creeping'. This crawling is the 'army belly crawl'. Well, Mary is doing it! This is BIG! She'd have absolutely NOTHING to do with this even 3 months ago. She wouldn't even get on the floor. So, why is this so important. Brain development. Crawling develops that part of the brain that helps you to track things and to read.
-Listening. Her listening skills have really improved. Well, maybe she has always listened, but she shows that she is taking it in by eye contact and facial expression.

Things that have been a little rough lately:

She keeps zoning out - dis-associative behavior.
She keeps putting her hand in her pants. (gotta teach her about pockets)
Grumpy face. Where did all the smiles go to?
-She follows me EVERYWHERE! This is two-sided because it's a good sign that she seeks out the society of her family, but when she leaves the table in the middle of her meal cuz I went to answer the phone, or follows me to the bathroom, it begins to wear on me. I know, I know. Look at the positive. Like the yelling. It's a GOOD thing, right?

Well, that's all for now.
My job: keep on looking on the bright side.
Every "little" step forward is still moving in the right direction.

Inch by inch

(New goal: Blog 3-4 times a week for Mary - minimum! Unless I am sick or on vacation. Or any other excuse I can invent. Just kidding on the last 2 sentences.)

Progress has been slow, but even small increments count as long as we are moving in the right direction.

Here's some of Mary's progress over the last few weeks.

- Painting. We have gone from mindless drawing (now I DO mean mindless! She would sit and draw without looking at the page and with a blank stare on her face.) A few weeks ago we had her start doing water colors. She is now painting consciously - making a design, choosing her colors, all the while fully engaged in what she is putting on that paper.

L to R: May 15, 2010, Sept 7, 2010, Sept 30, 2010
The cool thing about the last one is that she started with that shape and continued it in different colors. Completely engaged and aware!!! Yippee!! (BTW: her name on the first one was written with us holding her hand)

- Vocalization. I am calling it this to dress it up a bit. It's a nicer name for screaming "NO!" at us at an ear-splitting decibel level. The experts tell me this is a positive thing. When you are being screamed at - it doesn't feel so positive. But, it is what it is, and she is trying to communicate with us. This is different than her previous tantrums when she would lose control. She is forcefully telling us she doesn't want to do something now. On a more positive note: she is also making new "humph"-ing noises when she is happy. (Much better than screaming in my opinion)

- Creeping and crawling. As a young mother - I thought this was a crazy notion invented to make moms paranoid about getting their babies to crawl. Turns out I was wrong. The assertion is that crawling is an essential developmental milestone for brain development. You see, Mary never crawled. She just scooted on her bum. We have, in past months, tried to get her on her hands and knees, but she would have none of it. But, these past 2 weeks, she has been crawling. Yay! She has even - just yesterday - tried to "belly crawl" - another important step in brain development! (Interesting how this coincides with her painting!)

Mary in front of her new "school". The Children of Hope NACD center for Southern Utah.

Well, that's it for now. These are the highlights for Mary this last month. Again - these things seem small and insignificant to the observer. But for us, they are HUGE! When we look at the long range - we have a lloooonnnnggg way to go. But, inch by inch, we'll get there!