Saturday, November 27, 2010

I love this time of year! It's warm, it's cozy; most people are super-friendly - it can bring the best out in some people . . . (sometimes the worst). =0} It's a time of year where there are tons of beautiful decorations and Christmas music makes its appearance. Stores are busy with holiday shoppers and sales galore. However, it’s not always peaches and cream for those on the Spectrum - the Autism Spectrum. For Isaiah, this time of year is amongst his favorites, too, but the crowds, loud noises, and tons of change seem to overload his brain and in the midst of all the business and happiness (and decorating), we find Isaiah having an untimely, all-out meltdown.

Family over for Thanksgiving dinner? Meltdown.

Thanksgiving decorations going up? Meltdown.

Thanksgiving decorations coming down and Christmas ones going up? Meltdown.

Let's not even talk about the Christmas decorations coming down . . .

He hates change. We try to make the transitions happy for him - he even helps with the decorations or preparations (sometimes). But he can't seem to escape the whole sensory overload sometimes. Usually, one or two small changes are fine. It's more or less when those changes are in preparation for visitors that it can be a problem (when you have to make room at the table or move some of the furniture so there will be room for the guests and the Christmas tree).

Then, there is the chaos of extra people in the house, who bring extra noise because of the many stories that are being shared - it's then we find a meltdown. He enjoys the people being here, it's just that just doesn't like the noise. This is why theme parks are generally a bust for us - Isaiah can't take the noise, the busy-ness, the crowds; too many things to see and hear. Shopping, as you may have guessed, is just as tough on him . . . add to the crowds a crying baby/toddler/child and Isaiah becomes a mess.

This year, the family actually saw the meltdown (which used to be avoided by me taking Isaiah aside for time to calm down . . . or a video where Isaiah could escape for an hour or so). This year, that didn't happen - there was too much to be done and mommy overlooked the aside time. Add into the whole overload the relentless fever that he has had for 5 weeks, the fact he's not feeling very well, the fact that he's not sleeping well again, and you have a recipe for the mother of all meltdowns (at some point, I will write a post on his health situation). Did I mention the withdrawal from steroids and change of medications somewhere in there??? Poor guy had his plate absolutely full and just lost it. We had the gaping mouths, bulging eyes, and non-understanding comments going - people who don’t understand what it means to have a child with Autism and Sensory Processing Disorder. At first, I wanted to be angry - I wanted to dish out the hurtful comments in response to what I was hearing . . . but I realized they just don't understand. What would my hurtful comments do but cause squabbling and more hurt feelings?

You don't understand until you have lived the experience. Even working with children with Autism, I never got it. Sure, I had a wee bit more of an understanding (and learned not to point fingers and say a "misbehaving" child was just poorly disciplined), but I never truthfully got it - until now . . . now that I have my own child with Autism.

Here is a poem a good friend (and advisor) shared on Facebook (thank you, Kathy) that seems to explain it all from our point of view (add "he" for Isaiah where the poem has "she"): =0)

An Autism Christmas Poem

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
Asleep early for Christmas? unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure she gets
Just from bending her hands. (or jumping) =0)

"Just make her stop it," some say
"Just tell her "no",
“You must learn to be tough.."
On and on they go...

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

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

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

She said "hello"!
She ate something green!
She looked me in my eyes
She did not cause a scene!

She peed on the potty!
Who cares if she's ten;
She stopped saying the same thing
Again and again!"

Some 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 envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
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 so 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 our shoes
And I'll assure you…

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

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

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

~Christine Muczyk

1 comment:

stitching under oaks said...

this was a great post expressed your self and the situation so well. I hope this holiday season brings some moments of respite for both you and Isaiah. you're both in our thoughts and prayers.