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.

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.

Capturing Lily

She was under a large chest of drawers in my daughter's bedroom.

Think beady black eyes and whiskers.

Think rodent.

And I was on my belly trying my darnedest to get her out. Broom stick in hand, I gently poked and prodded, sending her scurrying every which way but my direction.

I had to round her up, and she could not be injured in the process.

Because unlike the mouse that our dear cat Lovey dropped in my house several months ago -- which sent me screaming for assistance -- THIS rodent had license to be in my home.

She is the newest member of the family.

She is Lily, the guinea pig.

My daughter thinks she is pretty darn cute, and I must admit that she is. But, damn, was she hard to capture after my daughter allowed her, without my permission, to roam.

The irony was not lost on me. I could not even stay in my home last winter when my neighbor hunted for the mouse that Lovey brought on the premises. I screamed like a crazy person. But, there I was, last night, at times almost eyeball to eyeball with a rodent -- a very quick rodent -- and I was even making kissy noises to entice her into the open.

My daughter wanted so badly to help. She began to wonder if Lily would stay forever under the dresser, only to wither away and starve. (Haven't I mentioned that I sometimes worry about Olivia's anxiety?)

But there wasn't much my daughter could do. And our joint frustration started to build -- although it was, at the same time, pretty amusing.

Little Lily seems to take a poop with every third or fourth breath, and I could just picture the stuff accumulating, pellet by stinky pellet.

Lord, ain't life something?

What really cracked me up about the whole thing was my five-year-old daughter's take on it.

"Mom," she says to me, "Why don't you just call some workers?"

What the ......?

Workers?
Do I look like I have workers????

My house is a mess, my hair is too long, my toenails have a teensy bit of paint on them from the last time I took out the polish two months ago, and laundry is piling up in three different places.

There may be a few parents of kids at her pre-school who have some workers, but I am not among them.

Finally, I decided the only way to get our little friend was to move the dresser. It was heavy, but I pulled the thing part-way out from the wall. I think Lily was so blinded, she didn't know what the hell to do.

And I got her.

A little TLC later and she was back in her cage.
Olivia was finally getting in the bed.

And it was time for some Q&A, Olivia-style.
Mom, how did God make people?

How long has the Earth been here?

How did He make the land and the water and the animals?

Is God in our bodies?

How can God be everywhere?

Sweet goodness, shouldn't it just be enough that I captured the pig????

Sometimes, poop-included, motherhood really is sweet.

A few weeks ago I watched the movie Catfish. I had not heard about it, and I was intrigued to watch the story unfold, documentary-style -- a story of a woman yearning so intently for something different in her life that she went to unbelievable lengths to escape, if only in her mind.

It is a movie I will not forget, to be sure.

Because I can identify.

OK, so I wouldn't have done what she did --and I don't want to spoil the movie for those who may be hitting up a Redbox soon.

But ..... I know that feeling. That feeling of wanting something more ... needing something more than what makes up your life.

And even just saying that brings on the guilt--because I have many blessings in my life.

But I have been through my share of sadness, too. And I have learned lessons that I wish I had never had reason to learn. Here was the most difficult: as much as it hurts to see your child suffer with a disability, there are things that hurt much worse. And sometimes, you so badly want your life to be different, that it can reach desperate levels, like it did for the woman in that movie.

So, I don't know what others might think of what she did. I certainly don't approve. But I understand what motivated her.

I wish I didn't.

Talk to Me

A week ago I had a moment when I messed up with my daughter.

It wasn't the first time. It won't be the last.

In my defense, I have had a difficult few years. And at the moment of this particular personal failing, I was confronted with an in-my-face reminder of how much pain I have yet to process.

The words tumbled out of my daughter's mouth. She had no way to know how they would affect me--although I think her words reflected just how many questions she, too, has about what has taken place in her life and the roles that certain people have played.

Talk about stitches ripped from wounds struggling to heal.

I said some things in that moment that were a reflection of my hurt ... and my anger--anger not at my daughter, but anger that is so very real and raw that it can consume me in the moment, if I am not careful, until I can barely focus on anything before me, even my beautiful daughter.

I told her, in no uncertain terms, that the subject of her words was so upsetting to me that I did not want her to mention it again.

Bad, bad, bad Mommy moment.

I recounted the entire situation to a friend who has become so dear to me that words cannot describe her value.

She empathized. She reminded me of the very difficult situation I have been in for a very long time. She told me, basically, to not be so hard on myself, which is something I need to hear from time to time. And she gently reminded me of something I can never forget--that no matter how difficult, no matter how gut-wrenching it might be, I ALWAYS want Olivia to feel comfortable talking to me, about ANYthing.

Pretty damn good point, wouldn't ya say?

So the next day, I did the best I could to gently reintroduce the ugly topic to my daughter. "Hey, Olivia," I said, "You remember when we were sitting in the restaurant the other day and you started telling me about ....."

I tried, even more gently, to explain, in very brief terms, why I get upset when I hear about the topic--but that did NOT mean she shouldn't talk to me about it. Because I am her mom, and I always, always want her to tell me what is on her mind, what she is thinking about, what she is worrying about.

I hoped my words registered. I hoped I had undone a big part of the damage I did the day before.

And guess what? I think I accomplished that goal--because of what she said to me later that night as I put her to bed. THIS time, I did a much better job.

Thank goodness this mothering-gig leaves you some time for improvement.

I decided to write about this because I don't ever want to forget the important lesson my friend helped remind me of. Only one of my two children can talk, after all, and so I have even more reason than most moms to never forget how important it is that my child feels comfortable talking to me.

And I wrote about this because I can think of no better way to say thank you to my friend, who will read this when she checks in with Google Reader tomorrow. I love you, gal. And I owe you so much.

Today is World Autism Awareness Day.

Perhaps there already is a face that comes to mind when you think of autism -- the face of a family member or friend.

If not, I ask you to think of this one...



And say a prayer.

Brave Like Daniel

All kids can't be brave like Daniel is.
--Spoken by Olivia, sister to Daniel, March 13, 2011

There are things my daughter sometimes says ....

Words that freeze time for me, for a moment.

And in that moment I am aware of nothing, other than the tremendous love I have for my children, and the reassurance that if anybody was ever sent into my life directly from Heaven, it is my daughter, my amazing Olivia.

I cannot begin to imagine what it is like to be Olivia.

I am an only child, so I can't even appreciate what it means to be a sibling, much less a sibling to a disabled brother. When I consider that Olivia is growing up with an older brother who will always need her help -- a brother who is completely unable to talk to her, cheer for her, listen to her, pretend with her, scheme with her -- I wonder just how deeply autism has affected her.

Is her brother's autism one of the reasons she basks in the attention of her favorite friend at school?

Is it one of the reasons she can so quickly dissolve into tears when things don't go her way?

Is it one of the reasons she gets so frustrated when she doesn't accomplish something in a matter of seconds -- does her brother's disability explain her need to be able to do everything perfectly, and to obtain perfection immediately?

No better way to put it: It is enough to blow my mind.

So I am thankful for the moments, like the one last weekend, when Olivia says something that makes me pause ... and smile ... and refocus on the amazing capacity for love that exists within my daughter.

She was climbing the ropes that connected two park play structures. Her father encouraged her to climb even higher, and there it was:

"All kids can't be brave like Daniel is," she said in response.

And there was her brother, high in the ropes, as high as any child could climb.

Even though he cannot talk to her, even though she knows he is so very different, even though she knows he struggles with so much ....

Olivia sees her brother as brave.

Of course she does.

Because he is.

She could not have a braver brother if she searched the world.

He faces each day with joy and enthusiasm, and the purest love for the people in his life ... even though he cannot talk to us, even though he is diferent, even though he struggles with so much.

I am so thankful I have a daughter who sees it, and who loves her brother so deeply, and who possesses the ability to remind me of the countless reasons I have to be proud of her ... and her brother.