Saturday, December 24, 2011

The Night Before Christmas....Autism Style

A friend of mine passed along this poem to me today and I thought it was perfect for the upcoming holiday. Which we will just try to make it through the day with no major issues. You can find that poem and more at THIS website.

Autism 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...

Friday, December 23, 2011


You just can't wait until he goes to bed. This has been one of those days. I have expected numerous meltdowns due to all the new people moving about, so I can't really say that I am surprised that Nick has had a good chunk of his time spent in the trailer today. Right now we are parked in front of the fam's house, so it has not been too bad. Relatives are close by, and have come out individually to visit with Nick and I here in the trailer. They are wonderful, really. We have ventured to take Nick inside the house numerous times today. He wants to go. He is happy for a little while. And then things get overwhelming. He shuts down completely, and starts losing it. And back to the trailer we go. It has been a viscious cycle all day. This is the part that makes me more sad than anything else. Neither us or him can have any sort of life like this. His senses completely overwhelm him. All. The. Time. He constantly seeks input, but then that input can turn on him and then overload. I know this happens to a lot of kids on the spectrum, but it honestly sucks. It sucks balls. Big Ones. I can only hope that next year we will figure out a way to get him under control, because right now he isn't.


We made it through Oregon and into California. We stayed the night Wednesday at a truck stop near Redding, and we were actually pretty comfortable there in the trailer. Thursday we headed further south to see some of Mike's family. We were shedding our jackets as we were getting further south. I think that is when we realized that we are so accustomed to colder weather-it was amazing to us to be just in normal clothes in December. The boys are having a blast getting to know their long lost cousins (whom we have not seen since our move up to Wa back in 2000-when all of them were just littles-including Michael who was 1yr old.)

Nick is being just Nick. We are used to him, but other people are not. Within minutes of visiting he had managed to knock down some picture frames. He was running to each room trying to do this. He knocked over the TV, took down their bulletin board, and a few other items. We try to stop him as best we can, but when your child is hell bent on knocking things over just to hear it drop (he cracked up at the huge bulletin board crashing to the ground) it can be hard to actually try to have a conversation with anyone. As soon as we let our guard down he was whizzing past us with arms extended and a satisfied grin on his face. The only time he stopped was when he was shoveling mac-n-cheese into his mouth. We decided it might be time to go and see some local Christmas lights-in part to get Nick interested in something else and spare the house more destruction. They assure me that it is OK, and that there is nothing he has knocked about (other than the TV) that cannot be replaced; but I still feel like a failure. I cannot control my child. More to it, I cannot control his autism. Even medicated he is hard to handle. Fortunately, everyone thinks Nick is cute and that we are just doing the best we can with him.

Sunset in Oregon

Christmas Lights!
On to the Christmas light display. It was HUGE! And so was the line to get in! We knew right when we drove up that there is no way Nick would tolerate standing in the huge line. Michael went out and stood in line with his cousins(they are now unseperable!) and the rest of us stood out in front with Nick. We pleaded our case with one of the local 'helpers' and he was nice enough to let us through without standing in the huge line. We had a short and sweet visit through the display, which was just what we wanted with Nick.
They have SUN in California! Who knew??!!

We are enjoying our time here in Cali with family! Not sure what is on the agenda for today, but I am sure it will be fun. Hope everyone has a Merry Christmas! Safe travels if you are going to see relatives and friends. Will try to post again before Christmas, but if I don't, then have a safe and happy holiday!

Tuesday, December 20, 2011


Kitchen area in our trailer....

 Well, our house has been packed up and we have been living out of our 26ft trailer since last Monday. We went from having over 1400 sq feet of living space, to 26 feet. For four people. Needless to say, it is cramped. But, we are making it work.
This is the 'Master' Bedroom. There are two cabinets for clothes on the sides of the bed, and under the bed is storage space for blankets, dirty laundry, etc.
The boys each have a bunk. To the right of the bunks is a closet for jackets/clothes/sheets, etc.
Most of this is Nick's medicines. Some can also be used for Michael.
Our 'Home' on the road...
We will officially be under way on Wednesday. Driving from one end of the country to the other. We have actually been living in the trailer now for a week. The first night we found out our heater did not work right(what a way to find that out...when it was 23f outside!) We went and bought a space heater and dug out every blanket we had packed. We got through the first night, and by Tuesday night our heater was back on line and working. I am tempting fate to write this, but it has been working fine ever since. The park we are at right now only has internet available in the laundry facilities, so that is where I am updating right now. I am also doing laundry-so I am multi tasking! The boys are out of school for the holiday break, and by about 4pm we are getting a little cabin fever. Today Nick and I took a nice long walk around the park and saw ducks, and threw rocks in the lake. He really seemed to enjoy that. He even picked which ways we went on the trail. We have my retirement ceremony to attend to tomorrow and then the next day, we are off. Michael is very excited! We are all anxious to get on the road since we have been going bonkers in the trailer...just sitting in one spot. Anyway, stay tuned for updates and pics from our journey! To Nana's house we go.....