May 24, 2011

El Baile de la Ranita

Mis amigas de Peru presentan: "El Baile de la Ranita"

Cool as a cucumber, my five-year-old girl walked up to the microphone and said those words.

And she didn't even sound like a Gringo.

Instead, she sounded so very much like her teacher--the beloved teacher from Columbia who has filled my daughter's days with patience and enthusiasm.

Wow, wow, wow.

My daughter, my baby, my torpedo of emotion and drama, not only stood in front of a HUGE audience in an unfamiliar auditorium, she listened intently for her moment to approach the mic. And she said her line perfectly -- in Spanish!

I looked at the other parents in that auditorium, with their cameras flashing and their extended relatives taking up way too many chairs. I know that they, too, were excited to see their children growing up before their eyes.

But how many of them appreciated -- really, truly appreciated -- what was taking place at that very moment.

They were witnessing little miracles.

Each time a child waited to take the stage and watched for the signal.
Each time a child danced to the music.
Each time a child sang.

Each time a child spoke .... every single word .... a miracle.

I know.

I know because my daughter's brother, my first-born, sat beside me in the audience, with no understanding of what his sister was doing, with no real appreciation of what it means to have an "end of the year show."

I know because my sweet boy cannot sing .... or speak.

I know because at the exact moment my daughter approached the stage, my seven-year-old son decided to bolt. I went after him, and then I stopped. I turned my back to my son with the hope that he wouldn't go far.

And I watched my girl.

How can a mother be filled with both joy and fear in a single moment?

You would know if you walked a mile in my shoes.

So many times I have, in a way, chosen Daniel over Olivia.

I have told her, "Just a minute, Olivia," when I have been pressing Daniel to make that extra effort -- extend his index finger to point, move his head up and down to signal his agreement, open his mouth and try -- just try -- to give me the closest approximation of a word that he can.

I have gone to her brother on the playground when Olivia wanted me to watch her. But Daniel was lost in a stim -- probably repetatively dropping wood chips -- and I just couldn't bare to see him trapped in his own world.

I have put her to bed when my mind was lost in the "what ifs" and the "what could have beens" -- when my heart was breaking and I was missing her father and wondering what in the hell became of the dreams I once had for my family.

Without a doubt, I have not given Olivia the attention she would have received if autism hadn't been in our lives.

So, in that moment, at the back of the auditorium during my daughter's end of the year school show, I turned my back to my bolting, non-verbal autistic son. And I watched my daughter.

She nailed it.

I knew she would.

I inhaled. I exhaled. I quickly stored the memory away in the little part of my brain that still works.

And then I turned to look for her brother.

He hadn't gone far. He was watching me. He was all smiles. It was just a game to him.

I grabbed his hand and brought him back to our seats. I wondered if there was anybody in the crowd who had noticed the child running away ... away from the words and the crowd and the music ... away from what must have seemed like chaos to him. Was there anyone who wondered if he might be one of "those kids" they hear about in the PSAs about autism? Was there anyone who watched me dart after him and questioned my sanity? (I question it myself, at times, and it certainly has been put to the test.)

Probably not. It was a pretty happy crowd, after all.

People enjoying their little miracles ...

My little miracle, my dazzling Olivia, groggily got out of bed as I typed this tonight. Without a word, she walked to the couch and fell back asleep. She is just inches away from me as I type these last words.

Every day, I look at the freckles on her nose, at the dimple in her cheek, at the eyes so clear and beautiful that they surely will some day make a man's heart melt.

If she only knew how amazing I think she is ....

I try to tell her. Every day. And she looks away and smiles, as if the compiments are a little too much for her to process. (I don't take compliments well, either).

I try to tell her because I want to make up for all the times I have turned my back on her in order to look after her brother.
I try to tell her because I worry about her spending her twenties and thirties on a therapist's couch, pouring out her heart about all the dysfunction she witnessed as young girl.
I try to tell her because I hope I can somehow help her turn into a healthy adult, with healthy relationships, and a healthy self-esteem.
I try to tell her because I want to somehow make up for my shortcomings as a mother.

I owe it to her, after all.

Because she has given me more in the past two years than I could ever possibly give to her.

Because it is moments like these ... Mis amigos de Peru presentan: El Baile de la Ranita ... that remind me of my blessings, and of the reasons to hold out for more.

May 13, 2011

Autism robbed me of my son.

I have never spoken those words.
But I have heard them.

I recently read a blog post that mentioned the writer's frustration with those words. I wish I could remember which blog it was, but I honestly cannot. There are so many wonderfully written special needs blogs that I can get lost in them for hours if I am not careful. So many of them make me pause to reflect on things that are dear to me, as well as things that are extremely difficult to think about.

And so it was with this particular post ....

Is it wrong for autism-parents to say that the disorder robbed us of our sons and daughters?

I have heard a dear friend of mine say it.

I have heard another dear friend comment on how uncomfortable the words make her feel.

I must admit -- and this is probably going to make me a little unpopular with some folks -- that my first reaction to the post was to wonder if the writer's child was hanging out on that "high functioning" end of the spectrum or if he/she was chillin' with the kiddos closer to my son's place -- you know, the kids whose autism is never, ever in doubt.

Oh boy. There it is.

I am probably going to be shunned by parents who think I just trivialized their worries concerning their children.

I do not mean to. Honestly.

I know that all parents have sincere, agonizing worries when their children struggle with communication and social skills enough to legitimately be placed on the autism spectrum.

But in all honestly, the sentiment that the writer takes issue with -- the idea that autism robbed a parent of a son or daughter -- is much easier to understand when you picture a child who is unable to utter a single word ... a child who is incapable of engaging in any meaningful conversation with anyone ... a child who cannot begin to understand the purpose of play ... a child who struggles with the meaning behind not only words, but even gestures.

I don't ever recall thinking that autism "robbed me of my son." I am a very literal person, and I think the words don't make perfect sense to me because I believe Daniel always has had autism -- from the time he entered the world. And, so, my thinking goes: how could autism rob me of a child when my child has always been autistic -- when autism has always been a part of him, and I have never stopped loving him as a son from the day he was born?

But don't get me wrong.

I do believe autism robs.

And robs and robs and robs.

It definitely robbed my son. It robbed him of so many things that I can't even begin to really think about them -- because to think about them would be to return to days when I was so lost in grief that I almost lost myself.

It robbed me, too, as his mother, and it robbed his dad as a father.

It robbed me as a wife. And it robbed Daniel's dad as a husband.

It robbed Olivia as a sister.

And it robbed Daniel's grandparents.

Autism robbed me of an opportunity to know my son in the way I should have been able to.

And it robs Daniel every day of the ability to show the world just how much is going on inside that mysterious mind in his beautiful head.

So would I say that autism robbed me of my child? No, I would not.

But I take no issue with those who feel that way, only to say that I hope all parents who struggle with autism find a way to laugh each day, to rejoice in "small" accomplishments, and to find their way back to what matters most when they find themselves slipping into despair.