Autism Viewed Through My Son’s Eyes

My children and I were driving around in the car last night and talking about Australia for some reason. I told my son that I have a close friend who lives there and that she has autism just like him. I explained that she’s funny and smart and completely wonderful. Then I told him that she is also a mom to two boys who are also autistic. He was completely fascinated by this.

This is how the following conversation went:

Son: So she has autism and her kids are autistic like me?
Me: Yes.
Son: So that means that when her kids have kids, they’ll have autism too, right?
Me: (deeply inhaling) I don’t know. It’s possible. Nobody is completely sure about what causes autism.
Son: Well I guess that means when I have kids, they will have autism, right?
Me: (thankful that he is in the back seat and can’t see me choking back the tears): I don’t know, my love. They might.
Son: That means that when my kids have kids, those kids will be autistic too!
Me: (apoplectic) Ummm…
Son: THAT’S TOTALLY AWESOME!!!
We will ALL have autism! That would be the COOLEST THING EVER!!!!! This world will be AMAZING!!!
Me: (eyes somewhat dryer now)
I love you, buddy. A world full of little “Yous” running around would be totally amazing!

Now I ask you, reader, who really has a problem with autism?
It’s not my autistic child, that much is certain.

He might speak a little differently than what you’re used to, but HIS opinion is the only one that matters to me.

Please also take note about my son’s choice of words. I’m not about to interfere with his use of “having autism” and “being autistic”. He’s happy just the way he is and that’s fine by me.
No, actually it’s much better than fine.
Like he always says,
“Everything is awesome”!

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I’m Thankful For Autism

For the past several days, I’ve seen a lot of people doing the 30 days of gratitude on social media.

I refuse to participate, not because I’m not grateful, but because to me, it’s more like bragging than actual gratitude.

There is one thing that I AM truly grateful for, though.
Ironically, just a short time ago, it was the last thing I had ever thought would be a blessing.

I am thankful for AUTISM.

More specifically, I’m thankful for my autistic son.

Because of AUTISM, I’ve had my eyes opened to the beauty that lies in everyday things when viewed through a different lens.

AUTISM has brought people into my life who have taught me so much about what is truly important.

AUTISM has taught me patience, unconditional love, and overwhelming joy. Things that were severely lacking in my life before I became intimately aware of it’s existence.

I’ve met adult AUTISTIC self advocates who have transformed my life. They are beacons who guide every decision I make for my son until he is able to make these decisions for himself. I’m truly blessed that these people have become my dearest friends.

I’ve learned that the only opinion that truly matters is that of my AUTISTIC son.
Not the “professionals”.
Nobody is more of an expert on his AUTISM, than he.
My job is to remove the obstacles and then step back and allow him to be his glorious, autistic self.

I am thankful for my Internet family of autism parents who love and support me during the rougher days. Without them, I would feel very, very alone. They never let me forget that you can’t have a rainbow without a little rain.

Contrary to the opinion of Suzanne Wright from Autism Speaks, AUTISM has taught me how to really live.

I celebrate small victories.

I revel in the beauty seen in everyday things like shadows and paper airplanes.

I live to hear our son laugh. It’s the elixir of life, really, and thankfully it happens often.

I rejoice in the fact that our son won’t ever stop talking. We know how lucky we are to hear his voice because for years, he didn’t have one.

I take pride in the fact that our son is gloriously, uniquely. HIM and his quirks make him all the more interesting.

I have learned to seek out and truly appreciate those who are different and who march to the beat of their own drum, for they are some of the most fascinating people on the planet.

I’ve become a ferocious advocate.
My goal is to leave each school with better policies and more informed educators.
It’s important to me to leave everything a little bit better than it was when I found it.
AUTISM taught me that.

AUTISM isn’t easy.
For some families, it presents far greater challenges.
Not every day is easy for us either, but it has taught me to slow down and breathe in each moment.
That alone makes the victories so much sweeter.

For all of the above, I am THANKFUL for AUTSIM.

Happy Thanksgiving, friends.

May your life be filled with tiny blessings and the ability to notice them when they occur.

With Gratitude,

Mama Butterfly

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More Time

“Will you play Barbies with me, Mama?”

That question will haunt me for the rest of my life.

I didn’t have any time to play with Barbie or my daughter because I was SO! VERY! BUSY!
I honestly can’t remember what I was doing at the time. I think I was cleaning out a closet or something “important” like that.
Shortly after that day, the Barbie dolls moved into their new home… a box in the attic.
My daughter is now in middle school and is no longer interested in playing with them.

I thought I had more time…

A few days ago, I sat on a park bench alone and observed as a mother walked by with her young daughter.
It was a perfect autumn afternoon.
The sky was blue, the trees were showing off their colorful foliage, and the air was clean and crisp.
The child was fascinated with the pretty leaves on the ground and paused every few feet to stop and pick up another.
She took great pride in showing each one to her mother who barely looked up from her cell phone to notice the wonderful treasures her child was discovering right beside her.
I wanted to grab that woman by her shoulders and shake her.
I wanted to shout “LOOK AT WHAT YOUR DAUGHTER IS DOING RIGHT NOW!!!!!” at the top of my lungs.
Her little girl will not be little for much longer.

She thinks she has more time…

You speed through your busy, stressful day trying to squeeze in everything that needs to be done and in doing so, you miss the beauty and the blessings in the simple and the ordinary.

You have no time, you say, as you fill your moments by crushing candy and checking your Facebook account instead of looking at your child’s face as they tell you about the magic that happened during their day.

You tackle some silly, unnecessary chore and miss the sad look in your daughter’s eyes as she tells you “It’s ok. Next time, Mama” only to realize there won’t be a next time.

Yes, parenting is hard and you deserve a break but childhood is so very fleeting.

Temporary.

From the moment a child’s small feet step into their very first classroom, time starts flying towards adolescence.
I can only guess that once high school begins, time shifts into warp speed and starts careening towards adulthood.

Time is greedy.
It doesn’t play givesies/backsies.
It moves on quickly whether you’re paying attention or not.

Your children are growing and changing and becoming more independent with each passing minute.

You think you have more time…

You’re wrong.

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The Reframe

My children and I were invited to join my friend and her daughter at their local pool yesterday.
We’ve been there with them before and we always have a great time.
Our friends had to leave a bit early but because it’s still summer vacation, we three decided to stay a bit longer.

My son, missing his playmates, looked around for some new friends to swim with.
Just then, a mom arrived with her three boys who seemed to be close to my son’s age.
Nick quickly noticed one of the boys was wearing the same Perry the Platypus swim suit that he had on. He used that observation as an opening to start a conversation.
(Oh people, do you know how much therapy and work and CONFIDENCE it took for him to do that?
Any idea at all??
Autism parents sometimes wait a lifetime and it never happens. It’s a huge thing in our world! HUGE!)

I watched my son use every tool in his arsenal to interact in a “socially acceptable manner” to speak with those boys.
He smiled.
He didn’t invade anyone’s space.
He said hello and told them his name.
He addressed the boy wearing the same trunks and said, “I see you like Phineas and Ferb too!”

And the response…?

Nothing.
Absolutely nothing.

They just looked at him.
Looked THROUGH him as if he weren’t even there.
I wanted to swoop in and protect him.
I wanted to shake my fingers at those boys and tell them that they could have said hello back.
I wanted to tell that mom that she was an awful person for not encouraging her boys to at least acknowledge my son.
I was heartbroken for my child as he walked away with his head down and shoulders slumped.
Defeated.
Again.

These are some of the most painful moments.

I was filled with hurt and anger.
It was heartbreaking to see my son successfully navigate his way through starting a conversation only to not have it reciprocated.
However…
I’m tired of only seeing the hurt.
I’m exhausted from the anger.
I want to see things differently.
I NEED to see things through a soft focus lens.

Instead of my usual reaction, I took a deep breath and a step back.
Instead of being angry with that mom, I realized that she really has her hands full with three small boys.
She was thin. Really thin. I wondered if she ever had time to eat a hot meal while caring for all of that boundless energy.
I wondered why she had a stroller when the boys were all too big for one. Did one of them have a disability that I couldn’t see?
I wondered why she was there alone.

I spoke with my children about the fact that people don’t always react the way we’d like them to. I explained that others may hurt us, often without knowing it but we needed to realize that it doesn’t change who WE are.
I hugged my son and said how PROUD I was of him for working so hard to make friends.
I told my daughter that I love how much she tries to protect her brother.

Then I realized that I also deserved to be proud of myself.
In the recent past, I would have allowed that moment to overshadow our entire day.
I would have allowed that hurt and fury to eat at me as it always had before.
I might have said something nasty to that mom, not knowing a thing about her.
I’m really, really glad I didn’t.

I chose empathy over anger.
I chose to reframe the experience and take away only the positive things.

I chose forgiveness and with that choice, came the peace and freedom to remember the triumphs of the day instead of the sadness.
I like this.
I think I’ll try it again next time.

“When you forgive, you in no way change the past- but you sure do change the future.”
-Bernard Meltzer

The Haircut (A.K.A. The Midlife Crisis)

Did you ever have an impulsive idea and just… go with it?

Before I became a mother, my life was all about being spontaneous.
It was exhilarating.
Exciting.
It made me feel… alive.

Alive is pretty much the opposite of how I have felt for the last five and a half months, when this horrible vertigo began.

Besides constantly feeling dizzy, at times I’ve also felt depressed, nauseated, bitchy, extremely bitchy, and when I hit rock bottom, slightly suicidal.

Yesterday, my wonderful friend (and talented hairstylist) came to my house to cut my hair.
We first met when our children attended the same special needs preschool and our friendship grew quickly.
Immediately after almost falling in the shower a couple of months ago, I hacked off six inches of my hair because I felt it was throwing off my balance. It had grown nearly to my waist and was so heavy, especially when it was wet. She came to my rescue to fix the mess I had made. There was plenty of wiggle room to fix my uneven mistakes and when she had finished (another two inches later), it still looked great. More importantly, my head felt SO much lighter.

Yesterday didn’t turn out nearly as well.

I thought that if I cut another six inches of hair off, I’d feel better like I did the last time. I had the brilliant idea that instead of just a trim, I’d go for it and cut it really short.

Spontaneity can be a real asshole.

When all that hair was gone, what I saw reflected back was so much more harsh than an extreme haircut.
Mortality was squaring off with me in my own mirror.

I had long hair for about twenty years.
It helped disguise a multitude of sins.

All of the things that I have tried to hide from myself are painfully visible now.
From a sagging jaw line to the unmistakable facial droop left from a neck surgery, I can no longer hide behind my hair and pretend that I am not aging.
The unnerving reality is that I’m not aging well.

For the past couple of years, I’ve started to feel a bit old.
Now, with most of my hair gone, it’s obvious that the long term effects of an autoimmune disease and other annoying health issues have settled into my face.

While a part of this is certainly foolish vanity, the larger portion that has been gnawing at me from deep inside is the fact that I AM getting older.
In just a four years (if I’m blessed), I will be fifty.

50.
Fifty.
FIVE-OH(shit!)

Fifty should mean settled.
It should mean secure.
Instead, it means terrifying.

I’m a special needs mom to two beautiful, YOUNG children who need me.
I need to live forever.

I

NEED

TO

LIVE

FOREVER

The person staring back at me in the mirror, stands no chance of living forever.
Nobody does.
The people I swam in the gene pool with, died in their early fifties.
My cousins, all within a decade of my age, passed away within the last couple of years.
I’m the oldest one left in the family pool.

Just a few years ago, I felt healthy and young, vibrant and alive.

This is about so much more than just a silly hairstyle.
This is a midlife crisis.
Actually, I hope it’s just a midlife crisis because that would mean I’m only halfway through my life.

I’m determined to stick around for another fifty years.
Maybe then, I’ll be ready for my next haircut.
…………………………………………………….
The photos below were taken of my beautifulkindcompassionatesmartfunny daughter just before and after we cut her hair to donate (for the second time) because she is the most awesome person on earth.

20130711-000816.jpgShe’s so much cooler than her mom.

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