Twas The Night Before Christmas (with Autism)

I saw this online, and just wanted to share it. :)

‘Twas the Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent.."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions..

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you.

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.

Christmas Quote

Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. --Calvin Coolidge

Today is Dh's birthday. Ds and I braved a snow storm to get his gifts. We also got a cake to surprise him.

Ds was restrained at school twice this week, and the school never even bothered to inform me.

DS had another meltdown yesterday at school. The school never even bother to try to call me. I don't even have a missed call on my phone.

"I had a terrible education. I attended a school for emotionally disturbed teachers." --Woody Allen

Ds had a nuclear meltdown at school today. I had to go get him.

“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.” -Chinese Proverb

MIL stood up today, in PT! Only for a second, three times! The first time she's been on her feet in months!! WOOHOO!!

Christmas Blues

I'm kind of struggling through the Christmas blues at this point.

I know, it doesn't make any sense. I have every reason to be absolutely delighted and thankful this year. My MIL is getting better, and we may even be able to bring her home for a little while on Christmas. That is just awesome news! And she's working hard to be able to stand, which would make all this a little easier to carry out. Even if she can't get to that point, we can still do it. We'll just need professional assistance to accomplish it. That's fine. And the nursing home will help us arrange it.

So why so blue? I guess it all just stirred up some old memories. I had a brother pass away just after Christmas when I was a child. Christmas was the last time I saw him. Christmas was never really the same after that, as you can imagine. So I've always had some struggle with the holiday. And his birthday is coming up soon. so that doesn't help much either.

On top of all that, my mother passed away just before Christmas. In fact, she was buried on that brother's birthday. (Yes, the timing certainly seemed like more than just a coincidence.) My mom had cancer, and was trying to hang on to make it to the holiday, but it wasn't to be.

I suppose all this hospital stuff, with the scary times, and the cold hard facts from the hospital staff, it really brought all those painful memories back, for me. Even though my MIL has pulled through, and is doing much better now, the memories still cling. Some of it was rather deja vu. My mother was unable to speak, and neither was my MIL. The family gathered in the intensive care waiting room, the blatent disregard for the hospital rules, and the hospital turning a blind eye to our rulebreaking. Becoming so familiar with the hospital staff, that you know them by name, and get mistaken for an employee. Being able to come and go as you please. The stress. The heartache. Hearing the cold facts, and knowing their truths, but experiencing denial anyway. Phone calls in the middle of the night. Siblings coming home. Sleepless nights, uneaten meals, afraid to hope or to plan. Prayers and bargaining. The Kubler-Ross stages dancing in my head instead of sugar plums. Knowing what can happen to a family structure, and to holiday traditions, when the matriarch is gone.

The experience with my MIL was a close call. Thank God we still have her with us, and we are thankful for every minute.

It's all been a blur between the past and present and future in my head and my heart. I feel the pain of the past, the fragility of the present, and the fear of the future.

I know I have to put all this aside and celebrate the holiday season. I have to throw myself into cookie baking and shopping and wrapping, and decorating the tree. Somehow it doesn't feel like Christmas though. It feels like past. And I have to ignore that. I will ignore it. It's just hard to get into it. I hope this year, I will start out by going through the motions, and then pick up the actual good feelings and anticipation. One can hope.

It's supposed to snow for the next few days. Maybe that will help lift some Christmas spirits.

To feel keenly the poetry of a morning's roses, one has to have just escaped from the claws of this vulture which we call sickness. -H.Amiel

Another 2" of snow yesterday

We're trying to see if we can bring MIL home for a while on Christmas!

We got about 5 inches of snow here today!

My MIL is OUT of the HOSPITAL!!!