March 31, 2010

BECOME AWARE: April is Autism Awareness Month

Do you see those eyes?
Those long, dark eyelashes?
Do you see that face?
Isn't it beautiful?

That is the face of autism.

April is autism awareness month. And April 2 is World Autism Awareness Day.

Six years ago, I didn't give the word "autism" much thought.
So much has happened in six years.

I am no longer the 28-year-old strumming through the days with my beautiful newborn, so sure that my life was exactly as it was meant to be, so sure that the world would hold great things for me, my son, and his father.

Six years have passed and my life is not what I had envisioned.

More importantly, my son's life is not what I had envisioned.

He still cannot talk. He still struggles to process the language -- the never-ending, too-frequently-demanding language -- that fills his days.

He gets frustrated. Who wouldn't. He did not get a fair ride in life. And, even worse, the past year has been so unfair to him, so confusing and unstable. It has affected him deeply.

Yet, here we are, my boy and I, and his amazing little sister. There is so much love in our home.

Autism has, without question, turned my life in a completely different direction than the one I thought I was travelling six years ago. Along the way, I lost the person I thought would be my partner.

This definitely is not the path I had pictured.

But, wow, look what I have discovered along the way.

Autism has been my teacher.

It is like a roadmap that unfolds slowly, in tiny little pieces, and each unfolding reveals something so essential about what really matters in this life, or at least what really ought to matter.

Autism has taught me that someone does not have to talk to communicate.

That so much can be said with our eyes, if we really take the time to look, to gaze, to listen with our hearts and not just our ears.

That being a mother will be the most difficult, and most precious, job I would ever take on.

That milestones -- amazing, joyous milestones -- are cause for tremendous celebration even when they come nowhere close to those annoying timelines set forth in the "what your baby ought to be doing" list. (You guys know the book. Mine will be for sale at my upcoming garage sale. In fact, I'll be happy to give it away.)

Look again at that face.

That is the face of a gorgeous, six-year-old boy who loves to jump in bounce castles. He loves to snuggle with his mommy and his Gram. He loves to dance with his grandfather. He taught himself to swim. He rode the Shock Wave (think double-loop coaster) for the first time when he was FOUR-years-old and loved every second of it.

He figures out so very much about this world without the benefit of language.

He is the most meaningful thing that has ever happened to me.

He has autism, and he is amazing.

March 28, 2010

Recipe for Successful Early Bedtime

(1) two children: one energetic six-year-old boy with autism and a precocious four-year-old girl;
(2) one sleepy mom;
(3) one amazing-beyond-words Gram.

Wake both children well before they desire to get up on Saturday morning.
Arrive by 8:30 a.m. at local mall for Easter Seals Walk-a-Thon.
Older child walks TWO WHOLE MILES; younger child walks one.
Drive directly to local Easter egg hunt.
Park .25 miles away from scene of hunt; children must walk to and from.
Hunt eggs.
Sit and eat candy.
Pet and feed animals at petting zoo--a feature of egg hunt.
Leave egg hunt and pick up food.
Drive directly to neighborhood park; picnic & play with awesome friends.
LOTS of spinning and climbing on new-age park equipment at said neighborhood park.
Drive back to house for one hour of chill-time with best buds.
Drive directly to local pool and swim for two hours.
Return home. Eat dinner and bathe.

If ALL directions are followed in proper order, both children SHOULD fall asleep 30 minutes earlier than normal. Yep, a whopping 30 minutes. But what a fabulous day!

March 11, 2010

Same World, Different Eyes

I find myself really watching people these days.

I can't pay attention to much else other than my son when he is with me because, as anyone with a nonverbal autistic child can tell you, there are so many things you have to think about while out in public that you don't have a lot of time to take in the scenery.

But when I am out and about by myself, or with just my daughter, or even with my son when I think he is happily occupied and not about to bolt, I am really starting to remember how much I once enjoyed "people watching."

But.... there is a difference now.

Call it age, call it maturity, call it life experience -- I don't know. But I don't see the same things the way I once did.

The middle-aged woman with the ultra-short-shorts and the tattoo on the back of her neck? You go, lady, whatever makes you comfortable.

The young couple who cannot keep their hands off each other while enjoying a warm March afternoon at the local botanical gardens? How sweet. What passion. They are so lucky.

The mother at the Walmart with the toddler and the new baby? Oh, honey, what I wouldn't give to share with you what I just saw as I saw it. Your sweet little boy just stood up in the grocery cart -- yes, a risky move given the chance of falling and all, but, whatever -- and he leaned over that infant car seat and kissed your new baby girl on her forehead. Do you know what an AWESOME miracle that is???

I watched a little boy today climbing at the park. He looked about three. He was gorgeous. He climbed all the way to the top of that rope structure -- a very tall structure that still makes me nervous when my son sits atop it -- and yelled down to his grandparents.

Three or four years ago, I would have been so envious. With every single word the boy said I would have wondered "why." Why does this child speak and mine does not? Surely his mother didn't do much differently? I took my vitamins. I didn't drink. I didn't smoke. I didn't even gain a whole lot of weight. I wonder if she ate tuna fish. Did she gas her own car? Because I always was putting gas in my car. Did she have her clothes dry cleaned? Because that was back in the day when I actually dressed in real clothes -- suits dry cleaned and pressed for the life of a young lawyer. Did she exercise during her pregnancy? Because maybe I exercised too much. Maybe I got my heart rate up too high for too long. Was she ever incredibly sick during her pregnancy? Because I ALWAYS will wonder about that horrible case of food-poisoning when I was not even two-months along.

But I didn't think any of those things today when I watched that little boy at the park. I don't think of them much at all, really. Just occasionally when I think back to how sad and worried I was back then. How depressed must I have been to actually look at people with their "normal" children and envy?

But I did. Now, I just wish I could tell them. Tell them all the wonderful things -- the teeny, tiny little things -- they have to cherish.

I glanced from the playground to the parking lot and saw a mom getting out of the car with a very new baby. If she could read my thoughts. Woman, cherish that baby -- right now, every single second. I just assume you don't currently have any worries other than the ordinary -- is he eating enough, will he sleep for a while tonight? And, if so, lady, remember every single day. Because you will never get these days back. They are perfect. Honestly, they are they closest thing to perfection you will ever know.

I mean that because I remember just how perfect I thought my life was when I held my first-born, when I lifted him from the crib each morning and saw how his face lit-up to see mine. What could be more perfect? It was, indeed, perfection, and I always will remember it that way.

And, yet, I also know that life doesn't have to come close to the way you once imagined it in order to be wonderful.

It was not a lesson learned overnight.

I can remember a few people telling me that back in the day -- back in the day of my dark despair and sadness. I needed to hear it; I wanted to believe it. Heck, I wanted to embrace it. But I couldn't.

It is not a switch you can just turn on.

These days, as I people-watch, I really notice the families who have children with disabilities. How much did I ever notice them before? Surely I did, didn't I? I especially notice the ones who take every extra step to make sure their children do not miss out on a single opportunity. They lift their children from the wheelchairs to the rollercoasters, they bring along the medical equipment so their children can eat through a feeding tube, they wait out tantrums so that their children can continue having a good time.

I especially notice the couples who are doing it together. What a testament to their devotion, not only to their children, but to each other.

I have had so much change in my life this past year. All of it so very unexpected. I am so glad that I now am finally starting to open my eyes again to the world around me, instead of walking through life in a haze, thinking only of how I will manage to get through the day, and the week, and the month, without the person I had trusted so very much.

I have had to relearn the lesson I learned as my son's mother, and embrace it all over again. But it still holds as true today as it did when I started to accept it as a mother.

Life doesn't have to come anywhere close to perfect to be good.

March 9, 2010

Harvard, Prison or Girls Gone Wild

My daughter is amazing.

Just four years old. So stinkin' smart.

Everything comes easy for her. At least so far.

She is independent, stubborn and resilient. And thank goodness, because her little life already has experienced more unfairness than any child's should. She is going to have to be strong, so it is a good thing her strength appears to come naturally.

She never forgets. She sometimes brings up memories -- stories from many months gone by -- and reminds me of them as if they happened yesterday, down to the tiniest detail. She even has recounted special things we did more than a year ago, things I never would have expected her to remember.

She is incredible. And, oh, how she has been such a gift -- the one aspect of my life these past several months -- these horrible, horrible months -- that never fails to make me smile.

But does she have her moments ....

Two days ago I was checking out at the Walmart. I am trying to make sure my autistic son doesn't take off. (You see, the boy who once was so good about staying near to me and listening to instructions has now developed a habit of running from me in all open spaces. And, wow, is he fast. It is just so funny to tick Mom off. ) I am trying to get all the bagged groceries into the cart. I am trying to get out the credit card. I am trying to keep my son from pulling the candy bars off the shelves and opening them right there on the spot.

And, what do I see out of the corner of my eye but my little girl -- so full of sweetness and love -- wrapping up a princess cell phone and some lip gloss in her winter coat. She bundles up her loot and turns to walk out of the store with me, carrying the coat casually under her arm like she has not a care in the world.

JESUS!!! My daughter is an attempted shop-lifter!!

OK, so if I didn't have my son with me, I probably would have stopped and had some big discussion with her about what she was doing. I would have gone into detail about the wrongness of it all--that when people steal it makes the rest of the world have to pay more--that it isn't right to take something from a store without paying just like it wouldn't be right for a stranger to come into her home and take off with her favorite toys.

But I did have my son. And taking my eyes from him for even a second these days can result in all sorts of trouble.

So, I just said, "What you are doing is called stealing. It is wrong and we are not going to do it. Put everything back."

As surprised as I was to see my daughter crafting a plan to steal, I also was cracking up, just a bit, on the inside.

Oh, how she is going to keep me on my toes, and in ways so very different from her brother. She already is filled with personality and has attitude to match. I am going to have to outsmart her, and when that is giving me a bit of trouble when she is four, I can't even imagine what life might be like when she is a teen.

Her newest little quirk is wanting to take all her clothes off when she gets home from school. Sometimes she will go through three or four outfits, but frequently she will want to just sit around in her birthday suit. (Yes, you are remembering correctly, it is her BROTHER who is on the autism spectrum, not her).

What is up with that???

If only, I suppose, we all could be so comfortable with our nakedness!

I don't know what the future has in store for my stealing, stripping, super smart girl, but, wow, does she enrich my life. She is my greatest joy, my reminder that life will bring lots of laughter my way -- despite the worries regarding her disabled brother, despite the pain of divorce.

But for now, I'll just be sure to shake out that coat before leaving the Walmart.

March 7, 2010


It started with a busted lip courtesy of my daughter.

(Actually, the cut is on the inside. But my top lip got swollen. I am no match for Angelina, but I kind of like the puffy lip -- if only it didn't hurt!)

In the afternoon, I listened to my daughter talk about poop for a good 7 or 8 minutes while waiting for her to finish her business in a public bathroom. Who knew there was so much to discuss?

Later, I fished my autistic six-year-old son out of the public pool after he decided the occasion called for skinny-dipping. I looked up to see his swimsuit floating on the water's surface. And there was my boy, floating like a jelly fish -- his white tush sticking straight out of the water .

Say what ya want, but my life is NOT boring.

Thanks, girl


Thanks for the midnight phone call.

Perfect timing.

Perfect words.

And, I know I've said it before, but, seriously, thanks for saving me God-only-knows-how-much money in therapy.

March 2, 2010

The Value of Friendship

How does one ever tell a friend how much she is valued?

The last year of my life has been, to say the least, tumultuous. I have been hurt deeply by someone who should have been my best friend, every day of my life.

I have struggled to process my own pain while also worrying about the needs of my two young children, one of whom can't say a single word to me -- not a single, solitary word -- about anything, much less the complexities of his world.

I currently am observing behavioral regression in my autistic son. And, oh, how I hate the word "regression." But that is exactly what I am seeing.

Why? Why are we moving backward on certain levels? Is it due to the events taking place in his family life?

Oh, what can I say? Crap, crap, crap. (That is the edited version.)

But there are some gals in my life, a group of strong women who could grab the attention of a room full of men just by walking through. They are that beautiful.

They also are smart, and confident, and caring.

They are wonderful, wonderful friends.

A shout out to you, girls. Thanks for the night out last week. Thanks for all the nights-out to come.

Thank, you, thank you, thank you for telling me that you have my back no matter what. For your understanding, for your sympathy, for your friendship.

You are, indeed, priceless.