Finding the right

Expressive language deficits

Receptive language deficits

Sensory processing difficulties

Impaired auditory processing

Reading comprehension delays

Impaired social skills

The list grows and contracts. We spend our days correcting deficits. Pushing him, prodding him. No matter how much he achieves, it isn't enough. Each time I leave a meeting with well-intentioned professionals, I wonder, does he do anything right?

We demand he control his extraneous vocals. We want him to communicate more fluently. We expect him to tolerate sounds, lights and textures he finds overwhelming. We want him to find order in a world he finds disordered. We expect him to process auditory information while often ignoring his visual strengths. We send a clearly defined message: be more like us.

The endless criticism would send most mortals into a lifetime of analysis and endless reflection of what constitutes good enough.  

Still, he greets most days with a welcoming smile, eager to please. He accepts us as we are wanting little more than a smile back. He doesn’t care if we are short or tall, rich or poor, articulate or barely literate. Each morning as he smiles down at me I wonder does he grow weary of trying? Does he find our demands insatiable?

To be successful in this world there are skills to master, there is no denying that. But I wonder, in our quest to correct all the "wrongs" do we miss so much that is right? Do we missing the very essence of his being?

Beginning today, I vow to find the “right” each day:

His smile and humor brightens the grayest of days. He brings joy and acceptance to anyone who takes the time to notice. As I reflect on this I know it is my privilege to be his mom.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

The perfect child

I sat near a young mother recently. Though I didn’t mean to, I found myself listening to her conversation. Clearly delighted by her child, she extolled his brilliance and charm. At the risk of bragging, she admitted her son was well beyond all his peers. He may even have leaped a tall building in a single bound, though I am not positive she said that. I am certain in the ensuing weeks he’s learned twelve languages. Or more.

I couldn’t help but smile at the little cherub nearby who sat blissfully unaware of his great prowess. That mother’s delight in her child made me smile too. I hope he is every bit as brilliant she thinks. I hope he can perform magical feats. One day he may hold our collective futures in his hands. I'd be foolish to hope otherwise. 

I have a favor to ask of you, mother of the perfect child.

I ask you instill in your child a compassionate heart as well as an open and inquisitive mind. Teach him  to be patient and kind and to fearlessly pursue all that is right. Bless him with acceptance of all people regardless of origin and ability. Show him how to appreciate their achievements no matter how small. Help him develop an eye for beauty in even the smallest of things. Stress the importance of giving back as much as he takes. Share with him the value of a smile.

Teach him to treasure each living creature and to value every life. Let him know it is ok to make a mistake and honorable to admit and learn from it. Help him to understand he won’t become more by making another less. Teach him to resist judging what he doesn’t understand and perhaps even what he does. Let him know he is no better – or worse – than anyone else.

Teach him to use his gifts wisely. Whether his accomplishments are grand or small, provide him with the tools to leave our world a better place. A place where your son and my son might one day peacefully co-exist. Maybe even be friends. You can show him the way, mother of the perfect child. I know you can. You can help him make the world a better place. 

Thank you from the bottom of my heart,
Sam's mom

 

Hope, denial and lotteries

When Sam was three the neurologist told me in a blunt, matter of fact way he would never catch up.  “Are you sure?” I asked. “He is barely three.” “Quite sure,” I remember hearing. “When a child presents this delayed the odds of catching up are one in one hundred.” 

One in one hundred. I remember dead quiet. I remember thanking her though I wasn’t sure why. I left for home, put Sam down for his nap and then I cried.

When he woke I looked into the trusting dark eyes of my beautiful boy and knew I couldn’t bring myself to say the words I’d heard out loud; not yet. I needed time to wrap my brain around the complete dissolution of the life I had planned for Sam. 

I prayed to God – any god – I would wake up with only the vague memory of a bad dream. I wondered what to do.

Around this time, I began to hear comments like “she is in denial” and inevitable the whispers that follow, “someone needs to tell her there is something wrong.”

Yes, I know, I thought.

But what was the protocol for news like this? Do you shout it from a rooftop? Send out announcements? I grew to hate the word “denial.”

And though I didn’t speak of this to anyone, I remember my meeting with the neurologist as the day I was handed my lottery ticket.

It was also the day I began to focus on one percent and what it meant. I started to think about hope and denial and metaphors. And so to anyone who has ever used the word “denial” I offer up the following:

What if you were offered a free lottery ticket for a Mercedes and the odds were one hundred to one of winning? You would likely take the ticket. You might fantasize about winning or the color of the car. Is it a convertible? Will I keep it or sell it for a bundle of cash? Is there room in the garage for it?

All of those thoughts, they are hope. You don’t build a garage for a car you haven’t won. That is denial.

With hope, I accepted my ticket and found the courage to slowly redefine our life. I found programs and therapies and for the most part, met wonderful people. I got through the early, difficult days by dreaming about the one percent. I began a college fund, knowing the money might never be used that way. And though I desperately wanted to build a garage for all the meaning it carried, I didn’t.

With the help of caring friends, I discovered the joy in simple things like playing with the kids on the local playground and hearing, “Hi Mommy.” I learned to question the definition of success and failure.

As time passed, I thought about the lottery less and less until I didn’t think about it at all. One day I realized the drawing had taken place some time ago. While I didn’t think I’d won, I wasn’t sure I had lost.

As for the lottery ticket, I still have it. You never know when someone might need a little extra hope.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

Our friend Shrek

This story is inspired by Kristen and her recent blog about castles...

We are a Shrek kind of household. Through the use of a TV, laptop, iPad and iPod, we can simultaneously view the entire Shrek franchise, versions 1 through 4, resulting in an efficient mishmash Shrek marathon with a very peculiar story line.

On really special occasions we watch random parts of Shrek II while Sam recites Shrek I in my ear, an experience I can only describe as surreal.

And then there is the Shrek music, but that’s a story for another day.

I guess you could say we border on a Shrek obsession. It was through this obsession Sam finally found a kindred spirit.

Shrek is a big, green, misunderstood guy who is disgusting, loud and prefers a solitary life. This is an apt description of Sam as well – right down to the green undertones of his olive complexion.

As it often happens through friendships, Sam was introduced to his ideal mate. Yes, Sam loves Fiona.

Her allure is undeniable: she is a princess with a castle, a kingdom, and many servants. She is also blessed with a powerful ability to belch. Since I do not have a castle, kingdom or any servants, and have been known to discourage bodily noises of any kind, I have been replaced.  It is simply impossible to compete with royalty that belches.

Yes, there are obvious cultural considerations. She is, after all, an animated character. But I’ve seen many relationships with cultural differences work. And, if she makes Sam happy, I will learn to put up with the incessant burping.

Hey, maybe I’ll get to live in a castle. You never know. 


Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

I believe

The holiday season was fast approaching. I mentally organized what I hoped to accomplish that night: First, the Christmas cards to those who had worked with Sam in the past year, then package their gifts.

The cards were already selected: simple and white with a small Santa engraving – whimsically elegant with plenty of white space for Sam’s large scroll. The stock was both heavy and soft to the touch. I had chosen the cards envisioning the juxtaposition of elegance and Sam’s childish script.

I laid out the cards and like a drill sergeant directed Sam to sign them, “Love, Sam.” I was surprised by his unexpected protest.

“Want write. Want write,” he insisted. Translation: he disagreed.  I groaned and thought, he is going write “underwear” all over my beautiful cards. Sam had been obsessed with writing “underwear” for the last few weeks. I was certain today would be no different. More firmly I said, “Just write Love, Sam”.

Again he refused. Looking to compromise, I found a piece of blank paper and said “OK, Sam. Write whatever you want here and later we will sign the cards with just your name.”

Sam accepted this and picked up his pen. I watched in surprise as he slowly and carefully wrote:

Sam looked up and said firmly, “Want write believe.” Taken aback, I asked, “Believe what, Sammy?” He responded emphatically, “Believe.” BELIEVE!”

A little humbled, I thought: Believe in God; believe in Santa Claus; believe in Sam. Believe in miracles. Whatever it is you believe in, just believe. It was a perfect a message. Within the subtext was an important reminder: never assume because little is said there isn’t something worth listening to.  

Somehow this story is incomplete without a fast-forward to 4:45 AM the next morning when Sam greeted me with an evil and boisterous, “WAKE UP, TRASH!”

I truly hope that greeting had more to do with his pal Oscar the Grouch and less to do with his general opinion of me from the prior night.

I believe I’ll never know.

Follow us on Facebook at https://www.facebook.com/BlendingWithAutism

A Day at the Beach

I sit on the beach watching as Sam as he rhythmically bobs up and down in the waves. The sky is blue, the surf impressive; the perfect day to body surf. Sam is not alone. The ocean is full of swimmers on this hot, sunny day. There is nothing remarkable about Sam or the day. He looks like any other teen enjoying the surf on any summer day.

The rhythmic pattern continues for fifteen or so minutes. I sit, relaxed, enjoying the visual order of it all. 

Without warning, an aggressive wave takes hold, pulling most of the swimmers under water. Within a moment, they all pop back up, briefly wipe their eyes and continue their rhythmic bob in the surf.

Except for Sam.

He runs to the shore, eyes shut, aggressively shaking his head, reminding me of my childhood Shepherd. As he gets closer, I hear “I need a towel please, I need a towel please,” growing louder. The voice inflections are identical with each recitation.

He doesn’t quite remember where we are sitting or take much care to avoid neighboring blankets as he searches for us. “I need a towel please, I need a towel please.”  

“Sam” we call. “Over here, over here." He heads our way, showering those he passes with water droplets from his still shaking head. Folks nearby give a sideways glance, some with discretion. They wonder about this boy.

Sam is focused on drying his face. Mission accomplished, he drops the towel, shouts a few random, unrelated words and gleefully leaps back into the water. The rhythmic weaving resumes. And so our afternoon goes.

As the day progresses, I notice some of the kids have joined together, making new friends. Sam bobs near them with little notice. The kids glance at him, managing to keep separate. They sense a difference. He is not destined to become one of the new friends today. 

I am sad for a moment, but my focus soon returns to Sam’s bright face and his exhilaration riding the waves; his jubilant smile and complete joy. I smile too as I pick up his towel and ready it. 


All is right with the world once again. At least right now.    




Follow us on Facebook at https://www.facebook.com/BlendingWithAutism