DAY 23: On Staring

It's ok if you stare.

Truly, it is.

I'm not being fascetious or defensive or sarcastic.

I will say it again, even more clearly:

It is ok with me if you stare at my son and I because you noticed he is different.

We are trained from birth to recognize the abnormalities in life. As young children, we could all hum along to "One of these things is not like the other", and took great pleasure in solving the puzzle. As we grow, we are encouraged to be unique, yes, but only in ways that are socially acceptable. We are told to stand out, to be leaders- but we also witness first hand how difficult the lives of non-conformists can be.

Trust me, I know that different "sticks out".  And staring is a normal reaction.

Honestly, I actually wonder if it isn't preferable to pretending not to see, scuttling off as if we are somehow like the insects on the ground, too unpleasant to acknowledge.

So yes, you can look at us. You can watch us. You can notice that we are different.

But if you really want to make my day, you'll take it one step further.

Ask the question.

It's on your mind. On the tip of your tongue. Just ask it already...

Is your son "ok"?

(Which, in reality, is the older, more mature version of "What's wrong with your kid")

Or, if you are feeling especially brave, "Does your son have special needs?"

Ask the question- and give me a chance to respond- cause I have a boatload of awesome, informed, education-focused answers.  I can practically quote verbatim half a dozen sources explain neuro-diversity. I am a walking FAQ on Autism Spectrum Disorder and a host of other PDD, Sensory and Behavioural conditions.

Please, let me share this with you.

You see, three years ago, I was just like you.  My knowledge of Autism was what I picked up watching Rainman or Oprah. I was scared of this condition that I heard you could get from a vaccine. I was terrified of having children who didn't love me, who were cold, unfeeling, disconnected.

I had a genuine phobia of Autism.

And I knew nothing about it.

I remember seeing it once- about 10 years ago...or at least I *think* I saw it.

And boy, did I ever stare.

I wish I had the courage back then to ask- not assume, but sincerely ask- to have it explained to me. I wish I had been able to say "Can you tell me about his disability? I really want to learn and understand.  Where can I learn more?"

But instead, I stared.

It may have been "awful" of me, I know. But not all stares are full of judgment. Some stares are inquisitive, desperate to understand.

And what I saw while I stared stuck with me for the past ten years...

A mother, adoringly stroking the hair of her grown son, whispering soft and reassuring things into his ears.

A son, whose body had betrayed him, clasping her hand in his, desperately trying to regain control.

A voice, wordless, but full of intention and meaning.

A human connection.

And, just like that, a flicker of light struck me in my darkest soul...there was love here. Real, reciprocal love.

And on a very basic level, I began to understand a fundamental truth: Whatever I "thought" I knew about Autism was wrong.

Of course, I couldn't have known then that I would one day stand in that mother's shoes.

But I do remember standing in yours.

And only through sharing knowledge and education can we begin to address the massive social misunderstandings that surround this condition.

So please, if you can be brave, ask me the question. I promise you, I will answer with as much honesty and information as I can.

But, if that's too much for me to ask of you, then please just look at me in the eyes.

Please stare.

If you don't look, then you can pretend we aren't there.

But we are.

So look.

And if you do look- with an open heart and an open mind- you will see a love story of a mom and her son, just trying to put the pieces of the puzzle together.

You will see affection.

You will see connection.

You will see love.

You will see the true face of autism.

Day 22: On the bus...(Wordless Wednesday)

Day 3 of school. A glowing report from school. And Sam's first bus ride. ♥

(Sadly, I was too busy working out with Sam to take pictures of him at his first day of Karate lessons, but it was super fun and I know that he will start to catch on soon.)

Day 21: On Lists (and Sam's first few days of school)

I like lists. So here's a fun one :)

5 things I learned on Sam's First 2 Days of School

1) It doesn't matter how well prepared you are and how much time you give yourself, you are going to be late for drop off/pick up or both.

2) You should always pour yourself a stiff drink before opening the "communication book".

3) No matter how many 'cool' things you buy your kid for school, they will inevitably covet the other kid's backpack.

4) The extra change of clothes isn't a precaution; it's a necessity.  (Yup, epic poo-apocalypse on day 1. Go Sam. My kid will forever be known as "that kid that poo'd"... :p)

5) I am totally going to be "that mom". Oops.

Seriously though, Sam's first two days of school were good. Some minor meltdowns, a couple of tears and some expected transition issues (we don't like to 'share' with other kids), but we are already starting to see some subtle changes and growth (like using the "more" sign).

The staff is awesome and they are buying a trampoline just for my kid. My anxiety has been almost completely alleviated and, even though I miss him like mad, I know in my heart that this is going to be awesome.

Now, step two of my plan: teach Charlie to sleep while Sam's in school so I can FINALLY DO ALL THE CLEANING!!!

Day 20: On denouement...

Today was one for the books, that's for sure.

Honestly, I just don't have the emotional strength to tell the story yet. I haven't even uploaded my pictures from the camera.

I understand the meaning of the word "denouement" even more today than I ever have before. The climax is over, but our story hasn't quite ended yet. There is still the aftermath, where the characters unwind from the action and slowly settle back into their "new normal".

This has been my evening.  I don't think I can consider this story fully over until I close my eyes and fall asleep, amd let it slowly lift from my body into the atmosphere.

Until then, I will relish the quiet and stillness that comes at the end of a great battle won. I will let my hand linger, intertwined with my son's as he softly slumbers, and think back on all the times I held him to sleep. I will reflect and dream of what the future will hold for my young daughter, and look forward to the hours of "us" time that we will now have together. I will let my body collapse into the arms of my amazing husband, and I will weep into his shoulders tears of joy, pain, heartache, and love.

And when this is over, there will be closure.

Roll credits.

That is, until we do it all over again in the morning... ;)

100th Post! On Anxiety Follow Up Post: On Taking Control

No they aren't.
They are not going to take my son.

That's just not how this is going to go.

Parents dream about what their child's first day of school will look like. They plan out the clothes, carefully label the supplies. It's a bittersweet moment in our lives. A rite of passage.

This is a milestone, not only for him, but for Jason and I.

And I will not be robbed of it.

So I made some calls.

And I made some changes.

And I took control.

So instead, of loading him on a bus right off the bat, Jason and I will drive him. We will walk him right up to his class room. We will hold his hand and see his face as he takes in his new surroundings. Will will hug him and tell him that he is safe, secure and comfortable. We will hold him and show him that he is loved and that we know he is ready for this new step. We will reaffirm to him that we are ALWAYS there, his two pillars of strength, never fully out of reach.

And then, when he is ready, we will walk away and trust that we have truly done everything we can to make this step a joyful and exciting one.

And when he is done, we will be there- in person- ready to take him back home again.

This will not be the worst day of our lives. I will not allow that. It will be a celebration of the next step in our family's journey.

Why?

Because I said so, dammit.

Day 19: On anxiety

I can't type today.

My fingers are trembling and the words are locked inside my brain, screaming to get out.

They are all caught up in a lump in my throat.

They flutter around like Monarchs in my stomach.

And I just can't catch my breath.

All day today, I've been breathless- deflated and wrinkled like an old abandoned balloon, shriveled from the memory of the inflations of the past.

The are going to take my baby.

They are going to take my son.

The child I carried in my womb for seven months. The one I for whom I was prepared to die so that he might live.

The precious baby that I grew at my breast, and swore on my life I would protect.

They are going to take him.

They will put him on a big orange bus,one that he's only ever seen in cartoons and pictures.

They are going to strap him down, ignoring his protestations, and drive away with him.

And when he cries, there will be no familiar faces to console him. No recognizable voices. None of the comforts that he has clung to his entire life.

He will not be able to ask for help. He will not be able say that he is scared. He will not be able to say if he is hurt.

Never before has his wordlessness been so tangible. So real. So terrifying.

"This is what we do", They tell me. This is their profession. They will take good care of him. They will see the words in his eyes, hear the voice of his body, listen to the whispers of his soul.

But They don't know him.  And he doesn't know Them. They are strangers to him.

And he will be terrified.

He will not understand why it must be so; that this is the first brave step into a whole new world of growth.

He will be confused. He will be angry. He will be hurt.

And I won't be there.

Even though I promised him I always would be.

I hope to God he will forgive me.

I hope to God I can forgive myself.

Day 18: On today (A Love Letter To My Son)

Some days, you wake up without even looking at me and walk past me as if I were some ghost in the room.

Some days, I kneel down to see what you are playing with and you carefully turn your entire body around so as not to look at me.

Some days, no matter how often or how loudly I call out your name, my voice is carried off into the wind as if you never heard a word.

Some days, the silence has a life of its own and I am overwhelmed by the aloneness of it all.

Some days, I just don't know if you know the difference between me and the stranger on the street.

But not today

Today, you sat on my lap to show me the latest toy to capture your attention.

Today, you ran to my arms, seeking in me comfort after scraping your knee.

Today, you took my hand and asked me to follow you as you moved from room to room, exploring your space.

Today, you sat up on my lap during lunch, not wanting to be further than an arm's reach away, even for a moment.

Today, you folded your body into mine and let me hold you, my lips resting on your forehead, tickling you as they whispered that I love you.

Today, you showed me just how deeply connected you truly are, to me and to the world.

Some days, our worlds are galaxies apart.

But today, you reached through the distance, took my hand and for a day our worlds were one.

As today reaches its end, I know in my heart that the "some days" are growing fewer and fewer. There are more days like today on the horizon.

Today, we lay one more stone on the bridge between us, as one more piece of the puzzle falls into place.

Today was amazing.