Fabulous Miss S.

Twas The Night Before Christmas - Autism

I saw this on a local parenting forum and it is just too on-point to pass up. 

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….

A little bit of this and that

I just realized that it has been almost a full month since I wrote, posted or even updated with a picture.  It's not that I don't think about this blog, really, I do.  Almost every night, as I heave my body heavily into bed I ramble off the five-million things I did not accomplish that day, yes, I am just that positive, heh, fuck you too, this website it among the top million or so each day. Really!

It seems that my stress comes in waves and I suppose that is just normal.  I have small bouts of free time that are so unexpected that I normally end up walking in circles almost because I can't figure out how to spend a whole three minutes to myself.  Catch up on chores and make the rest of the day easier for myself or engage in a guilty pleasure like eating while sitting down or pooping with the door closed?  See, you'd have trouble too.  Choices like these are not easy to make.  These types of decisions can only be made my someone who has gotten more than three consecutive hours of sleep. 

Speaking of sleep and lack of it, I am downing coffee, iced tea, iced coffee and Red Bull at alarming rates.  One caffeine-saturated beverage after enough until I'm buzzing and multitasking like the queen that I know I truly am. 

I screwed up today.  I had a cup of coffee this morning and then FORGOT to have any more caffeine and the resulting dizzying migraine is almost too much to manage.  It's a night of ice packs for my head and digging for left-over percocet from last c-section. Thanks Mallory! 

Speaking of Mallory: she is crazy adorable these days.  A whopping 6 months old, I know, I cannot believe it for one second.  She doesn't allow me a moment to breathe alone but her charisma and personality are so intense I can't help but be drawn into her. We cuddle, giggle and play all day.  We are on the go almost constantly and for this I feel guilt.  But really, her life could be a lot worse and there are only so many things I can worry about, right? 

We walked into Noah's classroom yesterday and someone waved and said hi to her and she sticks out her arm and smiles back and I'm all, yeah, my little overachiever, waving already!  And the teacher was like, yeah, that's great, huh? And I replied with doubtful sarcasm that yeah, hah, she's only six months old and I was subtly informed that yes, indeed, she is well on track and doing things she should be doing.  It is a real kick in the pants to realize just how distorted my sense of milestones has become since Noah's diagnosis.  Once you step off the charted grid, you just blaze your own path and celebrate your own achievements as they come if they come.  This special needs territory is often dark and messy.

Unit number one: Noah.  He is doing so well I cannot hardly stand it.  He is still seriously affected by his apraxia and of course, the autism and I suspect this will be a life long struggle for him and a large one for me as a parent in the coming years.  Right now, our focus is speaking.  I have a 32 month old son who really can barely talk. Fascinating as it is that our world of interpersonal communication just doesn't make sense to him, it is also infuriating and heartbreaking.  The emotional roller-coaster is never-ending and this is what parents of typical kids don't understand, every day we are reminded of our challenges and every day we conquer old ones and new ones pop up.  Constantly being challenged by the things you take for granted eventually wears us down.  Our celebrations, no matter how small are treasured moments of hope but also reminders of how far we have to go.  You feel awkward around us and it just gets too much to handle.  Remind me to talk more about this whole typical versus special needs parents issue later on, it really is a whole post (or three) in itself and I'm willing to be rather candid and I suspect that will help some people.

Noah has some words, more when prompted, a few that he uses spontaneously and in the right way.  He adores his teachers and likewise, they love him.  He is calmer, happier, and more verbal than ever before. 

This heavy and constant life is mine and I'm okay with that. I have found, not without intense heartache and headache, where my support beams are in this life.  You know who you are and I could not live without each and every one of you who comes into our home and life and loves us unconditionally.  Your support makes life worthwhile.

And now, the real reason you came to this website:

 

Juice!

NOAH: *Grunts loudly with arm outstretched in the direction of the cups*

ME: Time for bath, lets go upstairs.

NOAH: Uurgh!  UuhhHH!

ME: *frustrated* WHAT DO YOU WANT?

NOAH: Juice (D-uce)

ME: *Collapsed in tears* OK!  Here is juice!  

NOAH:  Dasgudduce

ME:   ...