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.