Autism Night Before Christmas

A poem written by Cindy Waeltermann, mother of two autistic sons and founder of autismlink.com, a Pittsburgh-based national advocacy group.

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 meltdown
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…….

The Diagnosis

My worst fears had been confirmed. My first and only child had been diagnosed with autism. I was experiencing a whirlwind of emotions. I was numb, sad, confused, feeling sorry for myself and my child, angry, and feeling like I was being punished. I wondered what the future would hold for my child and I, how would people perceive and react to his diagnosis.  Deep down inside I was still hoping he would improve in the future, hoping he would probably just wake up one day talking and that he would get better with therapy. Was I in denial? I don’t think so. I had been exposed and thrown into a new world, but, I was still hopeful.

I had been observing the signs but didn’t know what the cause was. There was the poor eye contact, the constant lining up of toys, the ability and desire to play by himself for hours on but the most obvious of all was his lack of speech. I had voiced my concerns to his pediatrician who referred me to two different specialists. The first had been for a hearing test which came back with perfect results. On my visit to the second specialist I described the signs I had observed in my son and again shared my concerns.

After listening to me he went on to give me his medical opinion on the possible causes and then he said the word ‘AUTISM.’ I had never before in my life heard the word. I was confused, curious, and a bit fearful but still hoping for the best. I told myself this wasn’t a formal diagnosis but just a medical opinion on what could possibly be the cause of my son’s lack of speech. I was advised to have him fully evaluated to rule out or confirm the possibility of autism.

This medical opinion on the possible cause of my son’s lack of speech prompted and fueled my research of the word ‘autism’. The more I read about it the more fearful, anxious and worried I became but I was still hopeful. I was hopeful that this would turn out to be a phase that my child was going through or that he was just slow in talking but not autism, NOT this strange and new world that I had begun to learn about.

After a few months the day of my son’s evaluation had finally arrived. He was now two and a half years old. I remember walking in to see a psychologist who would observe him at play, interact with him, have me fill out questionnaires and ask me a series of questions. The more questions she asked me the more it seemed she was describing my son as if she had known him. She asked,

“Does he look you in the eye when you talk to him?”

“Does he answer to his name when you call him?”

“Does he try to say any words?”

“Does he show the desire to play with other kids or interact with others?”

Unfortunately the answer to most of these questions was NO. My fears instantly increased. At the end of the evaluation, the diagnosis for which I had long waited and fearfully but hopefully anticipated, had arrived and confirmed my worst fears.

The Signs.

Mom, Mommy, words every mother greatly anticipates hearing from their children as soon as they start babbling. But imagine a mother living in a world where she is faced with the reality that her child may never speak, yet alone say the words mom or mommy. This is my reality. What I would give just to hear my child say those words.

Twelve years ago I gave birth to a beautiful, bouncing, baby boy. I was both scared and excited at the prospects of being a new mom but hopeful and optimistic nonetheless. This was going to be a whole new experience with endless possibilities for my son. He was like any typical boy growing up. He met all his milestones early or on time. He was sitting up at six months old, walking at nine months old and very active. He was just as curious as other kids and enjoyed doing typical stuff most kids enjoyed doing such as playing with toys, swinging on swings and playing in the dirt.

Although he hit all his milestones and would babble from time to time I began to observe after he turned one going onward that there wasn’t much progress being made in the area of speech. He was unusually always quiet and wasn’t saying any words. I told myself that he was probably just going to be a late talker. After all he was an only child with no siblings to copy or socialize with. One year jumped to two and my son still wasn’t talking.

My son had the ability and desire to play by himself for hours on. But again I thought he was an only child so he was just trying to entertain himself. But then, even when we would go out or be in settings where other adults and children were present he continued to show little or no desire to interact. Maybe he was just a shy person. After all, his mom was. I can recall him being out sometimes and people would say, oh he is such a quiet boy.

Then there was the constant lining of toys. They would be lined up with a certain precision and if someone tried to change anything he would protest. At times it seemed more like an obsession than just child play. Again, I thought this might just be his way of playing plus I had no previous children to compare him to.

I also noticed that my son would very rarely maintain eye contact with anyone. You would almost have to hold his face using both your hands as blinders to get some eye contact and even then, he would still be easily distracted by whatever his obsession was at the moment. Again I brushed it off, didn’t pay much attention or take it too seriously. I thought that’s just probably him being a curious child.

With him now past the age of one going on to two I voiced my concerns to his pediatrician. He still thought that my son could just be a late talker but referred me to some specialists to remove any other possibilities from the equation. It was during my visit that my child would receive the diagnosis I feared; but in hindsight and retrospect the signs were all there.

HAPPY THANKSGVING TO YOU ALL!!!

There are a ton of things I am grateful for. First and foremost I am grateful for life, a loving and supportive family, my son and all the lovely people who have taken time out of their busy schedules to read and show support to this blog. I sincerely wish for you and your families a happy and peaceful thanksgiving.♥

An Homage To Mark Zuckerberg and the Facebook Autism Community

     Who would have thought or imagined that one day by the click of a button, a single mom raising a child with autism would be able to connect with millions of other moms and dads in a similar situation from all over the world? Who would have thought that from the comfort of your living room, your kitchen, your office, a restaurant or a coffee shop that one would be able to connect to a crucial online support community that would become beneficial in coping with having a child with autism?

     Who would have thought that one day, by the click of a button, one would be able to create a forum to share our stories, our struggles, our grief, our pain, our triumphs, our accomplishments, our fears, our experiences of having a child on the autism spectrum, our hopes, our dreams, our challenges and our funny stories?

     Well thanks to Mark Zuckerberg, the creator of Facebook and a long list of Facebook pages we can, and we have! We now have the ability to create online support systems, that might not have been available in our immediate physical communities, to have dialogues and conversations with other moms and dads from all over the globe. We can connect with others who have children with autism and who not only know the intricacies of the condition but understand very well what you go through on a daily basis. We have been able to form new friendships and create new bonds with people who simply ‘get it’. 

     Today there is an online autism community existing on Facebook that  not only helps to raise awareness about autism but create and foster support systems that are beneficial to parents, children, siblings and loved ones who are affected by autism. There are several Facebook groups and pages available some of which might be suitably tailored for your needs or requirement from a support group. If you are a single mom raising a child with autism you might want to check out the Facebook page Single Mothers Who Have Children With Autism. If you are looking for a dad’s perspective on having a child with autism you could check out Autism Daddy’s page. In need of finding resources for your child with autism, then you could also visit Autism Speaks just to name a few of my faves. Last but by no means least my FB page: Tales Of A Single Mom Raising A Child With Autism 

     Again I would like to express sincere gratitude and appreciation to Mark Zuckerberg and the rest of the Facebook autism community for directly or indirectly helping to create and facilitate a great resource that benefits and brings together millions of individuals from all over the world in one common place, bound together by one common thread – a loved one with autism.