December 22, 2010

My daughter has been signaling that she wants, or needs, to talk about her brother.

And I struggle to best answer her questions.

I can't even begin to know what it must be like to see Daniel through a sister's eyes.

Olivia didn't come into this world with any preconceived notion of what it would be like to have a brother. (So unlike me, so unlike her dad--we both had all these dreams of what it would be like to have a son. Dreams that will never come to be .... at least not in the way we once envisioned--the way idealistic, hopeful, excited new parents envision. And I know those words will bring on some indignation from the "embrace-the spectrum" crowd. But I wanted my son to be able to talk to me, and I won't apologize for that.)

It was a while before Olivia realized that her brother was different.

I clung to those days like any young mother would, with the hope that maybe, just maybe, my first-born would start to make enough progress that his sister would never have to be his keeper.

I remember the little girl who sat in the high-chair and watched her brother's every move, fascinated by this little person who was so much closer in size to her than anyone else she knew.

I remember how her eyes lit up at the sight of him when we picked him up from school, how she would stick close to him whenever she found herself in the company of unfamiliar people, how she chased him through the house screaming "Dan-ya" and giggling with delight.

I remember how, in the very early days, Olivia's eyes reflected an adoration for a brother who could do things, and who was experiencing things, that she was not yet capable of doing or experiencing.

Those days are gone.

Because Olivia has far surpassed her brother, developmentally, in every possible way.

I remember, too, when Olivia said her first word. She was ten-months-old.

Daniel was two-years-and-ten-months-old, and he showed no signs of ever being able to say a word.

It was such a moment of joy.

And a moment of overwhelming grief.

Because not only did Olivia say her first word--"duck"--but she showed me just how far she had surpassed her brother in less than a year of life.

You see, she heard one of us--I can't remember if it was me or her father--ask about a toy duck--one that her brother liked.

"Where is that duck--the one that quacks when you squeeze it."

And off she went--my ten-month-old, already walking by herself.

"Uck??? Uck???" she said. And she walked into the kitchen, picked the toy off the chair, and walked back to her father.

"Uck," she said again, as if to say, "Well, here it is, Daddy. Glad to be of service."

Oh. My. God.

I didn't know wether to shout:

My daughter is a genius!!!


My son is so disabled!!!!!

Or both.

A part of me rejoiced. At least this child was going to be standing on the outside of this autism-spectrum-bully that attacks innocent children and robs them of so much. But, oh no, oh no, oh no, what does this mean for my son? Not only can he not say a word, but he is almost three-years-old, and he can't even follow such a simple conversation!!!!

I can picture myself in that moment as if it just happened.

I can picture every single member of my family.

It is as if someone took a picture, framed it, and put in a caption:

This is the moment when you finally realized, Leah--even if you didn't want to say it aloud--that life would never be the same.

Olivia knows today that her brother is different. She knows he is disabled. And I think she even knows that he is always going to need a tremendous amount of assistance.

Sometimes she handles it with amazing grace.

Sometimes she is royally pissed.

I can say the same about myself.

Tonight, before she drifted to sleep, we talked about how she and Daniel would probably be at the same school campus next fall. (I say "probably" because you never know for certain what will happen with Daniel. As a parent of a child with a severe disability, you spend so much time wanting to do the "right" thing, but never really knowing what that thing is.)

She mentioned some of the other kids she knows who will be there, too.

She mentioned a beautiful little boy--Ethan--a typically-developing-kid but an amazingly-extraordinary-child--who took a special interest in Daniel when they both attended an inclusve preschool.

"Ethan is Daniel's friend," Olivia said.

Hmmmm. Well, yes, to the extent Daniel has friends, Ethan is the best. But it is so much more complicated.

And here is the rest of the conversation:

I said to Olivia. "Ethan is very special to Daniel."

"But have you ever imagined how hard it must be for Daniel to make friends? Because talking is such an important part of friendship. And he can't talk to other kids, so it makes it almost impossible for him to make friends. Can you imagine how hard it must be for him to not be able to talk to other people, even though he must want to make friends just as much as we do?"

Olivia looks into my eyes:

"No, Mommy, I can't imagine that. I really can't."

She pauses, and she looks away.

"My imagination must be out of energy."

Oh, dear girl, I know exactly what you mean. But, I know you are trying--in ways most children, and even most adults--can't understand. You are trying to understand what life must be like for Daniel.

And I love you for it.

Because one of life's most difficult lessons is that there always will be people who will never stop and think about what life must be like for others, even when they ought to know better.

If I can do anything for my darling daughter, I hope I teach her to pause before judging, to look upon others with compassion, and to always consider the pain that must lie beneath the most difficult of circumstances.

It is something Daniel continues to teach me, and I am trying my best to learn.

December 18, 2010

Mama, do you ever wish God didn't make Daniel like this?

And there it is:

The direct, hit-me-upside-the-head question from my five-year-old daughter, sister to Daniel, observer of all.

I wasn't ready for it.

But what have I been ready for in this incredibly complicated, deeply painful, beautiful life of mine.

I had been muttering to myself just before she asked.

Daniel had stopped up the sink with something. I still am not sure with what -- some type of cardboard or paper most likely, because I was able to unclog the drain by simply pushing down a knife and wiggling it around.

(You see, one of Daniel's obsessions is water. I took out the drain plugs some time ago, but he still finds ways to clog drains and fill up sinks. He likes to pour things into sinks and bathtubs, too. Shampoo, soap, laundry detergent, lotion -- I have lost a small fortune in substances, quite literally, going down the drain. Anybody out there want to send me a present? I would gladly take a years supply of shampoo to replace what Daniel has poured down the drain. I get the cheap stuff -- I am a Suave girl all the way down to the white hairs starting to sprout off the top of my head.)

Anyway, back to the story. I was muttering to myself as I went about unclogging the drain. "Daniel, why do you do this to me," I said, even though, as annoyed as I was, I also was glad that he at least turned off the water before it started pouring out of the sink and onto the floor.

And there was Olivia, watching me the entire time.

Then came her question.

Oh, sweet Lord.

I inhaled. I exhaled. And who knows how many thoughts went through my head.

First of all, I don't think God "makes" anybody any particular way. We just arrive. We just are. It just is.

But am I upset that Daniel has autism?

Hell, yes.

Am I frustrated, each and every day, that he can't talk to me?

Without a doubt.

And as he gets bigger and bigger, and his frustration seems to grow at his inability to speak, my fears expand.

I can't think too much about the future, or I will lose what little sanity I have left.

This is not how I pictured motherhood.

This is not how I pictured life.

And if I am this frustrated when my child is just seven, how am I going to make it?

All these thoughts are swirling at rapid speed through my head as I look at my daughter, whose thoughts about her brother and about what it means to love somebody with a disability will be forever influenced by me.

And so I tell her:

Olivia, I wish Daniel could talk to me. And I wish he could talk to you. I really wish he could tell us what is going on in his mind. But I love him, just the way he is. Just like I love you, exactly the way you are.

And I went back to unclogging the drain.

It is the best I can do in the moment.

It will have to do.

December 14, 2010

Sometimes I can't find any words. Or maybe I am too afraid to put words to the thoughts swirling in my head.

Sometimes it is just too damn hard.

So I will share the words of another mother and blogger who is dear to me, even though we never have met.

I love the post I have shared below for so many reasons. I love how my friend manages to look through sadness and worry and fear to find all the ways her daughter teaches her.

And I love how my friend manages to put words to so many of my innermost thoughts.

I can only begin to imagine what it must be like for my friend to see her child suffer so much. I would never want her to think I was comparing our situations. But I do know something about the feeling she describes -- the feeling that, as a mother, I have to do something to let my child know I am there -- even when I have no idea what that something ought to be.

I, too, sometimes find myself singing in a dark room, in the hope that my son's tears will stop.

I, too, sometimes think about how difficult it is to love someone when you feel as if that person has rejected you.

It is the most heart-wrenching feeling I have ever known.

I want to share my friend's words because she amazes me...

and because she teaches me.

December 2, 2010

One of my daughter's playmates -- the son of a woman who is both a neighbor and friend -- was in my home a few days ago, and as is typical with this little boy, he was taking orders from my five-year-old girl with such good humor that I thought of trying to arrange a marriage.

He has been in my home many times before, and so he has seen my son Daniel and is very familiar with his differences. But he had never asked me about it, until this particular day.

I saw him watching Daniel and then listened, as he struggled to phrase the question forming in his head.

"Leah," he says to me, "Why does Daniel not know anything."

Hmmm .... How interesting it is to hear the thoughts of young children. How difficult it is for them to ask the questions about the things, and people, they find so mysterious.

"Well, honey," I tell him, "Daniel actually knows lots of things. He just can't talk to you about them."

My daughter then joins in.

"That is right," she says. "He has something called autism. And some people with autism can't talk, even when they are adults."

"OK," says our friend. "But why?"

Yes, WHY?

My daughter comes to my rescue.

"Well," she says, "That is just the way God made them."

I am not sure that answer really adds any clarity to the issue, because my adult mind still wants to scream, "WHY???" But .... it seemed to work for our little friend, who said simply, "OK."

I felt compelled to add something -- who knows why, he no longer seemed worried about it. But how will the world ever begin to truly accept people with disabilities like my son's if the mothers of these children don't try, at least on occasion, to increase awareness.

And so our little friend, my daughter and I, had the following conversation:

"You know how some people can't see? And some people can't hear? And some people can't walk?

"Yes," says our little friend, "Really old people."

HAH!!!!! I couldn't keep a straight face, but I soldiered on.

"Yes, sometimes really old people have trouble seeing, or hearing, or walking. But so do lots of other people, of all ages. Even kids. There are some kids in this world who can't see or hear or walk."

"Yeah," says Olivia. "That's why someone uses a wheelchair, because they can't walk."

"And what I think," I tell my little friend, with the knowledge that his family has a much more faithful church attendance record that I do, "is that God really, really hopes that when kids like you and Olivia, and when adults like me, see people like Daniel, who can't talk, or other people who can't see or hear or walk, that we notice them, and go out of our way to be good friends to them."

"You know, Daniel likes a lot of the very same things you do," I tell him. "And he does know lots of things. He can push the button to start his favorite video. And he can swim really well."

"Can he float?" our little friend asks.

"Yes, he can -- very well. And he can jump off the diving board. And he can swim to the bottom of the deep end to get diving sticks. And not only does he ride all of the rides at Six Flags -- even the big,scary rollercoasters, but he knows where all of his favorite rides are."

"Wow," says this darling five-year-old boy with the spiky blond hair and soulful eyes, "Daniel really does know a lot of stuff."


Maybe his parents really would go for an arranged marriage in, say, 25 years.

December 1, 2010

What It's Like

We've all seen the man at the liquor store beggin' for your change
The hair on his face is dirty, dreadlocked and full of mange
He ask the man for what he could spare with shame in his eyes
Get a job you fuckin' slob's all he replied

God forbid you ever had to walk a mile in his shoes
Cause then you really might know what it's like to sing the blues

Everlast, What It's Like

I am a college educated woman with an advanced degree.
I was self-assured and confident when I walked down the aisle of my beautiful hometown church to be married.
I worked in a professional field for three years before I gave birth to my first child.
I didn't touch liquor when I was pregnant. I have never used illegal drugs, not even pot. Never touched a cigarette. I took my vitamins. I was the ideal expectant mom.

And, six years ago ....
I found myself wondering if my son had autism and the child waiting in my womb had a birth defect because I was a bad person.
I found myself thinking that I must have been an incredibly bad person and maybe I didn't deserve to be a parent ....

Five years ago ....
I found myself caring for an infant who filled me with joy.
I found myself trying to be optimistic about the son who filled me with worry, even as he lit up my days every time he wrapped his chubby arms around my neck.
And I found myself slowly giving in to the exhaustion, lack of sleep, and fear ...

Four years ago ....
I had received the official diagnosis.
I heard the experts tell me that I MUST keep him as engaged as possible, as much as possible, every day, all the time.
I thought that my son's only chance was for me to keep his brain working, to stop the stims, to make every moment of his day "meaningful."
I hated the guilt; I hated the feeling that I could never do enough.
I started getting bitten by my son, who didn't even have a single word to tell me about his own anxiety.
And I started wondering if maybe, not only did I not deserve to be a parent, but maybe I would have been better off never having been born.
The thoughts scared the crap out of me, and so I told a doctor. And just having told someone, and taking an anti-depressant -- something I had never before considered -- seemed to help.

But ...

Three years ago....
I found myself in a new city with my two young children, missing my husband terribly, but hoping my family's sacrifice would make a big change in my son's life.
I felt incredible guilt that I was never doing enough for either of my children, that neither my son nor my daughter was getting close to what they deserved.
I felt pulled in a million different directions.
I was so very lonely.
And scared.

Two years ago ....
I felt everything in my life starting to fall apart.
I just wanted my family to finally all be together.
And tell each other we loved each other.
And laugh ...

A year ago ...
I was at one of the worst points of my life.
I had dropped to my knees, only to see a back and a closing door.
I cried so much I thought my eyes would permanently swell.
I screamed in frustration.
I saw even more people turn their backs on me, blame me, ignore me.
I wanted to pull the covers over my head every morning, but I had to get up. I had to get kids to school. And I'd be damned if I was going to stop taking them to parks, or McDonalds, or Six Flags.
But I was on automatic pilot.

And in the past several months...
I have gotten answers to questions I never thought I would have to ask.
I have dealt with pain I did not deserve.
I had it rubbed in my face.
I have come face to face with vicousness in human form, and walked away.
And I have found myself face first in the ground, sobbing, more than once.

I have the same old worries and a fresh set of new ones.

I knew this kid named Max
He used to get fat stacks out on the corner with drugs
He liked to hang out late at night
Liked to get shit faced
And keep pace with thugs
Until late one night there was a big gun fight
Max lost his head
He pulled out his chrome .45
Talked some shit
And wound up dead
Now his wife and his kids are caught in the midst of all of his pain
You know it crumbles that way
At least that's what they say when you play the game
God forbid you ever had to wake up to hear the news
'Cause then you really might know what it's like to have to lose

Everlast, What It's Like

I have learned a few things in this life.

I can mess up bigtime with my children, and even though I feel horrible about it, I most certainly will do it again.

I still can find reasons to laugh every day, and be thankful every day, even as I never forget the sorrows of the past six years. Because that is a choice, and it is what I have chosen. The reasons really are there -- I choose not to overlook them.

And nobody ever knows what it is like to walk in someone else's shoes.

I've seen a rich man beg
I've seen a good man sin
I've seen a tough man cry
I've seen a loser win
And a sad man grin
I heard an honest man lie
I've seen the good side of bad
And the down side of up
And everything between
I licked the silver spoon
Drank from the golden cup
Smoked the finest green
I stroked the baddest dimes at least a couple of times
Before I broke their heart
You know where it ends
Yo, it usually depends on where you start

Everlast, What It's Like

I know I am not done learning.
I hope the lessons waiting for me tell me a lot about how much people, myself included, can change. For the better.