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!

Forgive the lapse of time.
I have been side-tracked.
I am going to do better.

We've had some more firsts.
2 weeks ago, while Dan was fixing Mary's hair, she said, "It hurts".
She hasn't said it since, so either she doesn't want to, or we are doing her hair better.
Last week, Rachel was trying to get Mary to watch a movie with her.
Mary said, "No! Shooo!"
Yay! More words.
(we'll take what we can get!)
Some other good things are that she is initiating a few activities, like;
getting on the computer,
picking up and looking at books,
re-organizing stacks of papers,
singing (monotone, of course).
A BIGGIE for me was that a few days ago, she actually got clean clothes out of the closet to wear, instead of getting the old stuff out of the hamper. It's been a loonnngg time since she went to the closet.
And, on Sunday, she re-arranged her hair dillies. By herself!!
These are all behaviors that she hasn't been doing!
Plus, most days, she's been giggly and happy.
Way to go, Mary!!
Mary - 1 month old. 1984

Moving Forward

Sigh.

I didn't say that loud enough.
SIGH!
Dan and Mary returned last night from Mary's evaluation
with NACD and Bob Doman founder.
Taken as a whole - it went very well.
Even though Mary would NOT go up the stairs to his office.
No way Jose!
Coaxing, prodding, bribing, nudging would not work.
She was terrified, plus, she wanted to watch Mary Poppins.
So, Dan got her settled with Mary Poppins in the waiting area, and he went up alone. They talked about Mary. It was good.
Then Bob came downstairs and met Mary, then just sat and observed her while talking with Dan.
I am impressed that a man that important would do what it
takes to meet with Mary and help her.
He made lots of good recommendations.
And, a formal Individualized Plan is forthcoming.
So, why do I sigh?
Because my life is about to change AGAIN -
and this time it will be BIG TIME!
I know this isn't about me, but I feel so incapable at this point.
I am 53 yrs old and starting to feel it.
But, I have to gear up and somewhere find the
energy and strength to do this.
I need a dragon stone, I guess.
He recommends that Mary be CONSTANTLY engaged.
No down time.
She has several repetitive behaviors that are getting in the way of learning, and we have to break all those habits.
How?
By having her doing something new all the time.
Every.
minute.
of.
the.
day.
How will we (I) ever do this?
How?
How?
How?
I feel exhausted just thinking about it.

(8 hours later....)
Okay - I am done whining.
No more pity parties.
I can do this!!
I will take one day at a time.
I won't try to do it all at once, but one step at a time.
I will improve and do better each day.
I will continue to move forward.
Just look at her! How could I not give her my best effort?

And, as Loren always says now, "NO WORRIES".
MARY IS WORTH IT ALL!
My new motto will hereafter be:
"Just take BABY STEPS"!
"Once upon a time, you looked into my eyes,
And you trusted me with your dreams."

Up to Ogden NACD

The house is so quiet now.
Mary had a hard time waking up this morning!
Dan and Mary left an hour ago for their trip to Ogden to the National Academy for Child Development. Mary's first evaluation is scheduled for tomorrow.
We are excited for this evaluation.
Initially I was supposed to accompany Mary.
But, due to a back injury that makes travel excruciating,
my dear sweet Dan - father to my 6 chillins, decided this was too important to miss.
So, he went in my stead.
What a guy.
They will arrive in Ogden this evening, stay at a hotel, do some swimmin', and then tomorrow at 10am is Mary's appointment.
Yay!
I can't wait to see what we come up with and what
Mary's individual plan will consist of.
Plus, all the help we will get from NACD.
There are gonna be big things to come!

Little steps....

One of the many, many things Mary stopped doing during her regression was to use the computer. Now, I'm not saying that she was a master at Solitaire or was writing a novel or anything like that. But, she used to enjoy getting on the computer and just "dinking" around - or just messing up our programs really good.

Maybe I should back up and make a list of what her "typical day" has been like before we got involved with NACD.

7am - ish: Get up and get dressed in whatever I set out. If I forgot to set something out, she'd get her dirty clothes on from the day before. If they weren't available, she'd come downstairs in her undies. Forget the buttons and snaps.
7:15 - Have some breakfast that I made for her and set in front of her.
7:30 - Sit at the counter - in HER chair - and draw on a pad of paper. Mindless drawing. She won't even look at what she's drawing. Many of my attempts at getting her to be involved in something else are met with violent tantrums and screaming. Yeah, intimidating!
7:30 - noon - We try various activities to coax her out of her chair and do something else.
Noon - Lunch - pretty much like breakfast. If I try to get her to move to the table for a meal, she ignores it and goes hungry until I move it in front of her again.
12:30 - 5:30 - More mindless drawing. I put on music and act like a fool trying to coax her out of her chair. Usually I'll give up after a while. She has me well trained.
6:00 - Dinner with the family. No exceptions - she HAS to sit at the table for this one.
7:00 - Back to her chair and more mindless drawing. The girls try various things to get her to do something else. Rarely are we successful.
10:00pm - Bedtime - we escort her upstairs and to her bedroom, sometimes with resistance and yelling. If her pajamas aren't out, she'll try to go to bed in her clothes.
(Next blog I'll list her typical day NOW! Things have changed!!)

I know, pretty sad isn't it. And I'm baring my very private life by admitting this on a blog. But it helps make me accountable. It was worse when I was working. Thankfully I am no longer working and, we will take any and all improvements we can get, no matter how small or seemingly insignificant. In fact, nothing is insignificant!

And so, it's been a couple of years since she'd have anything to do with the computer.
Especially on her own initiative.
So, imagine my delight and enthusiasm when Mary, of her own accord, wandered into the office one morning, sat down at the computer, and started "dinking" around!! Waahhhoooo!!

She'll go in there and we put on Paint for her or Word (so she doesn't destroy the other programs with all her clicking - which she loves by the way) and she'll spend hours drawing or making lines of letters, smiling and humming the whole time! And that's not all! She'll get tired of that and go re-stack papers (another little quirky thing she used to do) or organize a pile of junk, or refold my kitchen towels - smiling and humming all the while.
Now, these may seem like small things, but they are not.
They are affirmations that Mary is returning to us, bits at a time.
See Mary smile!

My How Time Flies!!

It's been over 2 weeks since I blogged. Naughty me. So much has been going on -
I just haven't taken the time to sit down and catch up.

The whole fam minus Danny at the airport to greet Loren.

1 Major event occurred in our family 2 weeks ago. Mary's brother Loren returned from serving a mission in Fiji for 2 years.

Mary has a special relationship with Loren, her younger brother. They have occupied seats next to each other at the dinner table for untold years. Loren loves to "high five" Mary and tease her. She (most of the time) takes it good-naturedly. Other times she'll tell Loren to "STOP" or "Go-Way"!! He always has a big smile and a hug for her. They also have this silly "game" they play, putting their hands against each other and trying to push each other down the hallway. Hmm...Mary likes it anyways. Mary has missed Loren. And she is glad to have him home again.

Loren brought home gifts for everyone. He brought "sulus", or the native skirt, home for each of his sisters. Mary is frowning because it is past midnight and she is tired and overwhelmed.
It's good to have the family all together again.

Bowling for Smiles

Both of Mary's sister left for Girls camp yesterday. Usually that makes Mary sad - she misses them. But...
Yesterday was a good day with Mary. And, to make it even better, she was invited to Kristen's birthday party at the Bowling alley.

Years ago, when Mary was in High School, she loved to bowl. Loved it. LOVED, LOVED, LOVED it. Did I say she loved it? It completely delighted her, plus, she was pretty darn good at it. Well, bowling is one of those things that Mary no longer wanted to do during her regression. SO..., I wasn't too sure if she'd like this bowling party thing.

Mary & sisters in the van

I worried for nothing. From the time we got there and got her shoes on, to the time she went to bed last night, it was BIG smiles. So happy. Giggling. She still loves bowling, obviously. Plus, she loves her friends. Kristen and Cindy are so good to her. They watch out for her - maybe because they are older - they feel protective of her.

I am grateful for good friends for Mary. I am grateful for bowling and all the other things that Mary loves again. Looks like we'll be doing this for Family night more often in the future!

July 28, 2010 - First Post - a little background

Summer. What a summer it's been. Trips to Wisconisin and to California - with all states in-between. We've never done so much driving in so little time before. Mary has weathered it well. I'm not saying that she wants to take any more trips right away, but she endured it well.
This past spring, we connected with a wonderful woman who has a 33 yr. old daughter, who like Mary, has Down Syndrome. Her daughter, Cindy, can do amazing things. Like; she can play the piano and takes violin lessons. She talks and reads and sings and even reads music. She knows rudimentary Spanish through classes that she has taken. She leads a very full life. This woman introduced us to NACD - National Academy for Child Development. NACD has been a part of Cindy's life since she was but a baby. It, and her wonderful supportive family, are the reason Cindy is so accomplished.

Enter us. Since leaving High School, and the subsequent diminishing size of our family, Mary has been in severe regression for the past 6 years. SERIOUS regression. One year ago Mary would often refuse to eat. Some days we could barley get her to get out of bed and get dressed. She lost weight, stopped talking, making eye contact, or even smiling. She had no interest in us, her family, in interacting, or participating in activities which she had previously enjoyed so much.

I quit my job this past winter. After much thoughtful and sincere prayer, I knew this was what I needed to do, even though it would be a strain on our already tight budget. But it felt right, so we took the plunge. After just a few months of spending increased time with Mary, we began to see some improvements - smiles, hugs. But, I was lost. I was home with her, but what do I do now? What activities could help her the most?

More prayer. Enter my friend and her daughter, Cindy. (There's more to this than meets the eye - another story for another day) Since that time - in April 2010, we have applied to NACD for an evaluation - which will happen this August 18! In the meantime, Mary has gone over to their house where we have put together an "interim" IEP for her. She swims, jumps, spins, swings just to start off. Then we have puzzles and words, counting, games and interaction with her new friends, Cindy and Kristen. Her progress has been amazing - even with this interim program. She makes eye contact again, smiles, plays on the computer, gets dressed by herself and more.
And so, even though on most days, I still don't know what I'm doing, I carry on. Even though my youngest is almost 16, here I am, "home-schooling" my Mary. I'm a little scared and nervous, but I'm excited too. This blog is our diary of our journey together. We both have a lot to learn.