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!!!

Or.....

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.

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.

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.


http://rhemashope.wordpress.com/2010/12/13/a-silent-night/

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."

OH, GOD, HOW PRECIOUS IS THIS CHILD.

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

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.

Why I Run

I could say that the past two years of my life have been a beatdown.

And I wouldn't be exaggerating.

My trust, my hope, my heart ....

have taken a beating.

How do you cope with life when everything is not how it should be?

When there is no foundation beneath your feet.

And two little children wake up every morning expecting to be loved, and cared for and comforted.

It ain't easy.

You learn a lot of lessons.

Many of which you would have been better off never needing to know.

But life ain't easy.

So you either cope, or you fail.

I don't know how other people do it--people who have found themselves taking care of children, much less a child with special needs, on their own.

I never expected to be in the position I found myself in last year, and I still sometimes wonder how it happened.

I also still struggle with how to deal with the challenges placed before me. But I do know that one of the biggest reasons I haven't jumped off a cliff is because ....

I ran.

And ran and ran and ran.

What do you know?

This simple act of taking one step after another, pushing myself against my previous time, forcing myself to go one extra mile, telling myself that if my son could face the world with all of his challenges, then I could surely keep my feet shuffling along the pavement ....

It saved me.

I was never an athlete in my younger days.

I dodged balls thrown in my direction.

I would have liked to skip junior high PE in its entirety.

I always felt like I couldn't do anything even remotely athletic. I didn't even want other kids to see me run, because I thought I looked so incredibly awkward.

So what a surprise ...

I am running a 10K on Thanksgiving morning.

And I am so excited.

I have completed one half-marathon and three 5Ks in the past year.

And my times were nothing to sneeze at.

I can do this. I can actually run.

I love what running has done for me.

I love the tension that flows through my body when I wait behind the starting line.

I love the sense of accomplishment when I cross the finish line.

I love the mental challenge that comes with each race, the feeling that nothing can stop me but myself, that nothing can stand in my way as long as I decide to keep moving my feet.

Nothing .... can ..... stop ..... me.

It is a glorious feeling.

It makes me strong.

And I can use all the strength I can get.

AMEN

http://www.schuylersmonsterblog.com/2010/11/wrong.html

Oh, mirror in the sky,
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
And I'm getting older, too
-- Stevie Nicks, Landslide


Sometimes you don't have any choice but to change.
Because the world as you know it disappears ....
What you envisioned as your life is no more.

And, yet, your responsibilities remain the same.
Indeed, they expand.

You wonder if you can do it.
But you have no choice...

And you change.

In ways big and small.

Sometimes you cry.
You mourn the loss of everything you believed to be real.
And the sobs pour through you.

In ways big and small.

Eventually, you start to recognize things that will keep your from disappearing.
You accept them.
You embrace them.

But you still worry, and you still mourn.

In ways big and small.

Joyful Curls

My daughter wants her hair curled.

It is not national news.

Reporters aren't beating down my door for a sound-bite.

But it is one stinkin' big deal to me.

My girl, my don't-wash-or-brush-or-fix-my-hair-daughter, WANTS HER HAIR CURLED.

What happened?

She climbed into her car-seat Monday after school and started talking about her role in the school Christmas pageant next month.

And she said the words that nearly caused me to drive off the road:

Mommy, will you curl my hair for the Christmas show?

Ah, heck yes!!!!!

The next day was a repeat performance.

Mommy, will you curl my hair for the Christmas show?

Will you curl it when we get home?

I am not sure what brought all of this on.

But I found that rarely-used curling iron and curled her hair.

AND THEN SHE ASKED ME TO PAINT HER FINGER NAILS.

I am loving this.

And I ain't even THAT girly of a girl.

Olivia, thank you, thank you, thank you.

For these moments when I can just be a mother paiting her girl's finger-nails.

I will curl your hair every day if you want me to.

And I will inwardly cringe some day when you decide you are old enough to do it yourself.

Thank you, dear daughter, for these moments of pure joy.

I would do just about anything to "fix" my son.
Even though I love him just the way he is.

He is becoming more and more frustrated at his inability to effectively communicate, as his behavior clearly indicates.

It is frustrating for me, too.

But there are things that are even more frustrating in my life.

Yep, I could tell you about things that are even more frustrating than a seven-year-old, non-verbal son who requires constant attention, who likes to push my buttons and who runs from me in public parks.

I have a list, actually, and it is fairly impressive--if by "impressive" you mean difficult enough to put me in an asylum.

There are no answers to my problems these days.

No way to know what is going to happen.

We can all say that, I suppose.

I THINK I have accepted that I am only ONE person, that there is only so much I can do.

I tell myself that I have, in fact, accepted that I can't "fix" anyone. I haven't even done such a good job of "fixing" myself, although I am trying.

I am running.
I am dancing.
I am writing.

But have I fully accepted that there is only so much I can do?

No, I haven't.

Not yet.

Seeking an Expert

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... me.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....

something.

Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

One Hour at a Time

So God just help me out while I fight through this grievin’ process
Tryna process this loss is makin’ me nauseous
But this depression ain’t takin me hostage
I’ve been patiently watchin’ this game, pacin’ these hallways
You had faith in me always-- Eminem, You're Never Over


I have had some really dark days due to this disorder known as autism.

They began to hit me the hardest just before my son turned three.

My shoulders were the best outward illustration of the pain I was feeling on the inside.

I have never been tattooed, but back in the day, my shoulders were like a rainbow of colors: black, blue and purple.

They were my son's favorite biting target.
And they showed it.
I could cover up the bruises on my shoulders with clothes. People rarely saw them. And I tried, too, to cover up the immense feelings of sadness I felt on the inside. But that wasn't as easy ...

Eventually, I began to feel it -- the overwhelming sense that something was going to give.

I was starting to lose my mind, and I knew it.

I knew it because I began to think things that were completely irrational.

I began to wonder if perhaps God had wanted me to never parent.

I began to wonder if my son was challenged because I was a bad person.

I began to wonder if things were so hopeless that I would be better off just .... giving .... up.

Thank God, or good fortune, or the moral direction I received from my parents, or all of the above, but ..... somehow, I maintained just enough sanity to question the rationality of my thoughts.

And I started taking steps, baby steps though they were, to reverse my thoughts.

It was a long process.
And it isn't as if you are ever just done. When you have a child with such a severe disability that he most likely will always need your help -- just to get by -- well, you can't ever live like a "typical" person. Your mental health has to take on a priority the likes of which many people never will be able to understand. You have to remind yourself to be calm, to live one day -- if not one hour -- at a time. And you have to come to realize that happiness is, to a very large extent, a choice.

It is a choice that requires work.

I constantly remind myself of all the things in this life that make me happy.

If it weren't for my son's disability, I would not take nearly as much time to reflect on these little joys.

Don't get me wrong--I would much rather my son go through life without obstacles. But I know that I would not appreciate my daughter's remarkable gifts as much as I do, if I did not know firsthand what a miracle they are. I would not appreciate the amazing friendship I have found in one of the most beautiful people to walk this Earth, if I didn't realize just how much I need it.

I still have my dark moments.
They have been much darker than I ever thought they would be because I suffered a loss that, to me, was even greater than the loss of my dreams for my son.

Talk about starting over....

But the one thing I know about life is that it doesn't change simply because you question your ability to handle it.

And when there are two children depending on you, you simply cannot give up.

Accepting the Unimaginable

Accepting autism.

What does it mean?

My son turned seven in August.

I first started worrying about autism when he was just one-year-old.

So I have been confronting autism for well over six years.

But have I truly accepted autism?

In some ways I have.

I know it is here.

It is here in my life every day.

Because my son has autism.

Put it on a tee-shirt. I will wear it.

Look at us while I chase him through a department store.

Gawk, if you are so ignorant and so inclined, while he stims with a plastic fork in Chic-fil-A.

This is our life. This is my family. This is what autism looks like.

If you don't like it, I really don't give a crap.

I know there is nothing I did to cause my son's autism.

THAT, in itself, must be a part of acceptance.

Because there was a time in my life when I wondered if I was to blame for my son's obstacles.

I also know there isn't anything I can do to change my son's autism.

That, too, must be a part of acceptance.

But I still have a responsibility to help him achieve what he is capable of achieving... whatever that is.

And THAT is probably one of the most difficult aspects of accepting, and dealing with, autism.

How do I best help my child?

And how do I maintain a sense of self?

HOW can I balance the roles of (1) mother of a seven-year-old boy, (2) caretaker to this child who needs constant care, (3) teacher to this child who needs as much teaching as he can get during the course of each day, and (4) mother to the "other" child -- the incredibly inquisitive, five-year-old daughter who so frequently stands on the side-lines while her brother gets the majority of my attention????

Wasn't I once someone else???? Oh, yes, I once was a wife. I once was a young woman full of love and dreams. I once was a girl who had no idea what life had in store. I even went to college; I even had an advanced degree. I thought I was going to BE SOMEBODY.....

Yes, there was once a time in my life when I had an identity that had NOTHING to do with autism.

Times change.

What does it mean to accept autism?

Hell if I know.

Maybe someday I will figure it out.

Here's hoping .....

Your Baby Most Likely has a Lymphatic Malformation: Say What???

I have mentioned before that my second pregnancy was, to put it mildly, worrisome.

I discovered I was pregnant with my darling daughter just about the exact moment I started slipping into a dark hole of worry about my son.

Autism was starting to dominate my thoughts.

And then ... I find myself sitting in a boatload of worries for a baby growing inside me.

It was May 2005. I was getting an ultrasound, my husband at my side, when my wonderful OB says:

Um, I don't mean to stress you guys out, but there is something on the baby's face or neck.

Um, WHAT??????

She wanted us to go to a "fetal development specialist."

Shit.

My head was spinning as I listened to her. I tried to focus on the "positive." Whatever this "thing" was didn't appear to be very big. It might be something they could "take care of" right after she was born. Something they could "drain."

But when we left the appointment, I saw the fear in my husband's eyes.

He is a physician.

He was panicked.

Shit, shit, shit.

We had to wait for our appointment with the fetal development specialist (AKA a "high risk" OB).

We both spent hours on the computer, pouring over articles about facial deformities.

Unfortunately, we spent those hours alone. He was on the computer by himself. I was on the computer by myself.

We never really came together in our fears.

We were walking through a no-man's land of absolute dread.

And, as we walked, we looked at our beautiful son and wondered:

Why in the heck is he not developing like he should?
Why does he have all of these weird little quirks and behaviors?
Why doesn't he wave?
Why doesn't he point?
Why doesn't he imitate?
Why doesn't he TALK?

And, again, for the most part, we worried, and anguished, alone.

We had multiple appointments with two different high-risk OBs. It was like a nightmare.

The high-risk OB who would eventually deliver our daughter told us that he believed she had a lymphatic malformation on the lower part of the left side of her face. Both my husband and I already had decided, based on all of our reading, that a lymphatic malformation was the most likely answer, so we wern't surprised by the news.

As explained on the Children's Hospital of Boston website:

LM is a sponge-like collection of abnormal channels and cystic spaces that contain clear fluid. ... Lymphatic channels sprout from veins in early embryonic life. Protein-rich fluid normally filters out of blood-filled capillaries into tissues throughout the body. The lymphatic system serves to transport this fluid back into the venous system. ... Although the precise cause is unknown, LMs are believed to be caused by an error in the formation of these tiny, thin-walled sacs and tubes in the embryonic period. No known food, medication, or activity during pregnancy can cause an LM.

An error in the formation of .....
Bring on the guilt.
Bring on the depression.
Are you trying to tell me something God?
Did you never want me to have children in the first place?
I got to the point where I was so sure bad news was waiting around every corner that I didn't even want to go to the mailbox.

OK, so back to reality ... The definition noted above is a fancy way of saying that sometimes lymphatic channels don't form correctly, and the result is like a traffic jam of fluid. LMs can occur anywhere in the body, but they frequently occur in the face and neck region. They can be big, medium, or small--sometimes so tiny that you don't even notice, sometimes so large that they wrap around a child's entire face. They sometimes block a baby's airway and cause profound disfigurement. If large enough, LMs can basically suffocate the baby in utero or be deadly upon birth.

As I waited for my baby to be born, I spent hours and hours reading about LMs. I joined an on-line LM support group, and while my son was at preschool--three mornings each week--I read the postings of parents whose children were severely affected by lymphatic malformations.

I went to see the doctor once every two weeks and had an ultrasound at every appointment. He wanted to see if the LM was growing. He was cautious, but encouraging.

The lymphatic malformation did not appear to be growing.

Everything else looked good. The baby's head measured perfectly. Heart looked great. Lungs were doing what they were supposed to do. Kidneys looked fine.

And, at one appointment, we learned something that was a HUGE bit of good news:

The baby was sticking out its (I didn't want to know gender, even after ALL those ultrasounds!) tongue. Sticking it out and in, out and in.

What a relief -- because I knew that many LMs that obstruct the airway keep a child from being able to withdraw his/her tongue. It just hangs outside the mouth because the LM is such an obstruction that there is nowhere else for the tongue to go.

So, that bit of news definitely was welcome. It meant our baby's airway most likely was not obstructed.

I tried so hard to focus on all of the good stuff, even though I also heard the following words from the doctor:

You need to deliver the baby in a hospital with a level-four NICU. I want to have the NICU team standing by in case the baby needs to be intubated.

I have had more than my fair-share of dealings with the five stages of grief.
As I read about children with large LMs -- about their trachs and G-tubes, about their multiple surgeries and severe disfigurement, I hit that bargaining stage pretty damn hard.

OK, God, if you would just let this baby be born breathing without any problems -- just able to breath and swallow -- I will stop worrying so much about Daniel and appreciate him for who he is.

Well, my spiritual life ain't what it should be, and as I've noted, I think God mostly listens and doesn't intervene. But ...

If he was listening, and if he did intervene on my daughter's behalf, he did one heck of a job.

She is beautiful.
And amazing.
Smart and funny and, oh, so filled with energy.
She is a singing, dancing delight, even though she sometimes drives me crazy with all of the drama.

Her LM definitely was noticeable at birth, but it did not cause her any problems.

You can see what it looked like in the picture of her the day she went home from the hospital.



Her LM has not caused her any problems in her five-plus years. It still might someday--they sometimes swell during illness or periods of great hormonal change, like pregnancy--but the fact that it hasn't swollen yet is a great sign. It turns dark when she has the slightest bit of injury or trauma to that part of her face--like when she collided with another little girl in her dance class a few weeks ago. But the color goes away in time.

Most of the time, nobody would even know it is there.

She is absolutely beautiful.




But going back to that bargain with God .... I definitely have not held up my end of the deal.

I want so much more for my son.
I HATE how he is so frustrated by his inability to speak.
I want him to be able to write a letter to me some day, even if it is just a short note with simple sentences.
I want to hear him say "I love you."

This life of his is not fair, and by extension, his family endures unfairness as well.

And, yep, God, I ain't happy about it.
I suppose that as my frustration grows, I should be on my knees that much more often. Especially when I have days like I did yesterday, when my son is pushing all my buttons and I find my frustration level growing in volumes. Sigh ....

It is not as if God promised anything to anyone, in terms of this life here on Earth.

And I know there are times when He must be so disappointed in me--at my impatience, at my self-centered woes of unfairness.

But I hope He also knows that, at the end of the day, I realize that being my son's mother has made me a better and stronger person ....

even though I still have a very long way to go.

Autism brings on its share of headaches, heartaches, and out-and-out stress.

No doubt.

BUT there are "autistic traits" that definitely would improve the world if only the "normal" people would pay attention.

As I have noted here before, when my son likes you, he simply likes you -- unconditionally.
Whether you are fat,
whether you are bald,
whether your clothes are a mess,
and your life is even messier ...

It doesn't matter.

My son doesn't judge as others do.

What matters to him, is really quite simple:

Is this person nice to me?

What a concept.

And so perhaps the most troubling thing to me, in this life of mine that has been so troublesome as of late, is that there are people in this world who, for lack of a better description, are totally the opposite.

It would never occur to my son to do anything to hurt someone.
Because WHY would he ever want anyone to hurt?

And, yet, there are people who take pleasure in others pain.

They can contribute to the worst pain a person has ever known and rub that person's face in it.

Amazing.

I'll take my son's problems, numerous and challenging though they are, any day before I'd want to deal with problems, and people, like that.

So Happy to be Mistaken

I had a big scare one morning last week as I was driving my kids to school.

I started down the road that borders my neighborhood -- it runs directly behind my backyard. It is a very busy road during the morning.

I approached the part of the road that bordered my own backyard and saw a furry blob.

A black, grey and white furry blob.

"No, no, no," I whispered. "Oh no, oh no, oh no."

Not Lovey.

I slowed down and drove past the dead cat.

It looked just like Lovey.

I turned down a side street and parked the car. I jogged over, stood smack in the middle of the road and gazed down. (Yes, I could see my car the entire time. Please, nobody call DCFS. I have enough problems.)

The collar wasn't there, but Lovey sometimes gets his collar snagged on bushes and ripped off. I thought there might be a bit more white around the neck than I remembered. BUT the rest of the cat looked EXACTLY like Lovey. And he was crumpled up right there behind my house -- behind the fence I see Lovey walk along and climb over almost daily.

Oh, boo, hoo, hoo.

I moved the cat from the middle of the road to the grass.

I finished taking my kids to school.

I called my dad,

Boo, hoo, hoo.

I texted my best friend.

Boo, hoo, hoo.

I thought to myself: Seriously, God, with all of this crap in my life? With all of this pain and sadness? And now there is no Lovey?????

I know, I know. No reason to question God. I have never believed he causes hardship. I am a believer in an omniscient, keeping-tabs-but-not-interfering-God. It is the only way I can make sense of the world (although I still pray, so go figure).

I went home to get something to use to wrap up the body.

And who is there, basking in the sun in the middle of my driveway????

Dear, sweet Lovey.

OK, so I know I haven't been sleeping much. I haven't eaten much. My mind has been blown away by the details surrounding the crumbling of my marriage.

BUT AM I HALLUCINATING??????

I dropped to the ground and loved on Lovey.

And I drove back to the grassy shoulder.

There was that poor little cat.

I placed him on a towel and gently wrapped him up.

There was no way I could just leave him.

Add it to the list of things I never thought I was capable of doing before life slammed me upside the head with a you-really-don't-have-much-of-a-choice-fastball.

I can remove feline corpses from the side of the road.

The nameless kitty is now buried in my yard.

And I sure am happy every time I see Lovey.

Finding Myself

When your first child is profoundly autistic, you can easily lose yourself in his diagnosis.

Especially when you have given up a career of your own.

Especially when you have been needed to be the primary parent for that child, as well as the child who followed.

The years go by.

He goes from two to three and still no words.

And you start to think they might never come.

You battle depression. You wonder what you did to bring this suffering upon your child. You go to bed crying. You try to care for a newborn daughter whose presence in your womb came JUST as you started to fall into this world filled with worry for your son.

Three turns to four, and you are presented with an opportunity to try something new. Maybe this will work. Maybe the people at this school will find a way to unlock the potential.

Four turns to five, and you think that maybe he needs just one more year. There are moments where you see his mind at work. You see him solve problems without the benefit of any language. You see him start to nod and shake his head and answer your simple questions. You see him start to move his mouth in different ways and laugh when he makes a new sound. But, still, no words.

Five turns to six, and WHAT????? Why am I now doing this alone? What happened to my marriage? And, crap, now we are in public school. His teacher is wonderful. His aides are wonderful. But the football coaches' salaries probably surpass the special education budget for the entire district. And my son is stimming more than ever and still is struggling with some skills most two-year-olds have mastered.

WHAT NOW?????

Deal with all of that and .... well, I guess it is not hard to wonder why I can be asking, "What in the hell happened to me?"

Where am I?

Who am I?

And what in the h-e-double-l am I going to do with the rest of my life that does not involve autism?

I am struggling to find myself.

One thing I have learned is that I am deeply flawed, but that I have the best intentions .....

I guess that counts for something.

Another thing I have learned is that, no matter what, I refuse to leave my children. I know that with absolute certainty. How do I know? Because there have been moments when I have been face-first in the carpet crying out to God ... moments when I have been curled up in total despair wondering how I would get up in the morning.... moments when I actually have told my best friend, God bless her, "I just can't do this anymore."

And, yet, here I am.

I can't imagine being anywhere else.

I need to find out more, though, about myself, and about the person I am going to be five, ten, twenty years from now.

It is going to take some time.

But here are a few of the things I am discovering:

I like to dance. I really, really like to dance. I like putting on a black dress and dancing all over a crowded, hoppin' dance floor.

I like to run races. I like the tension that flows through my body while I stand with the runners at the starting line. I like the feeling of accomplishment when I finish, regardless of my time. I like knowing that the girl who never once considered herself remotely athletic can run a race and run it well.

I have room for a lot of forgiveness in my heart. More than I thought possible, and certainly more than I ever thought I'd need.

And one other thing I have discovered as of late -- and as with so many things, I owe a bit of gratitude to my bud S for helping with this discovery -- there really is something to be said for taking the high road.

I have taken only a few steps down this road of self-discovery. My shoes are definitely worn, and the bags under my eyes speak for themselves.

But I am not turning back.

Home Sweet Home

I went away for the weekend.

There was something important I wanted to do.

Something I needed to do.

I am not sure how much I got accomplished.

But I had to try.

I came home this evening with my children and walked into a very messy house.

A dishwasher full of dishes that needed to be put away.

Laundry that needed to be folded.

Beds unmade.

Toys scattered throughout every room.

But there was something so comforting about walking into my house ....

Like an embrace.

HOME.

So much more than a roof over my head and a floor beneath my feet.

A foundation.

I put my children to bed and was thankful that we all were under the same roof ...

that everyone was healthy and would be back on schedule tomorrow ...

that both of my kiddos had schools to go to where they will both be happy, even though one of them will be working on skills that most of us take for granted.

It is good to be home.

The Child in My Heart

Hey you, you're a child in my head
You haven't walked yet
Your first words have yet to be said
But I swear you'll be blessed
...
And you, you'll be blessed
You'll have the best
I promise you that
I'll pick a star from the sky
Pull your name from a hat
I promise you that, promise you that, promise you that
You'll be blessed --Elton John, You'll Be Blessed


My son has some of the most beautiful hazel eyes I have ever seen. The colors in his eyes sparkle when he is happy.

His laugh is contagious.

But is he the child in my head??? The child I envisioned when I learned one December day eight years ago that I was expecitng my first child?

No.

I don't think I was envisioning too much in particular. I wanted a boy, but I never told anybody that. I secretly yearned for a baby boy simply because I knew how very much my husband wanted one. And I just felt it -- from early on in the pregnancy. I knew the child growing in me was going to be a big, strapping boy.

And he was.

He also was, and still is, absolutely gorgeous.

But like most moms, while my tummy expanded and my feet swelled, my thoughts mostly were focused on my baby's health.

Would he come out with ten toes and ten fngers and everything in the right place?

Just after I gave birth, and the nurse stepped away with my baby to check him out and clean him, I kept asking my husband, "Does he look OK? Does everything look OK?"

As if anybody was going to be able to take one glance at this child who just miraculously entered the world and say, "Yes, eveything is OK."

I now realize: it just doesn't work that way.

My baby boy DID look just like the baby in my head.
But there was something in his head that was not right.

There was a time, during my never-ending struggle to deal with my son's autism, when I could not even look at pictures from his first year of life.

How sad.

Now, I occasionally look at the pictures from his infancy and toddler years, and I play, "Can you find the autism."

WHEN should I have known?

Sigh ....

Daniel is not the child I saw in my head.

He struggles.

And I worry:

Who will be there for him when I no longer can be?
Who will make sure that his life is a happy one?
How can I ensure that he becomes all he can be?
And given all his problems, all of his obstacles, how will I make sure that my son truly is blessed?

Talk about worries ....

No, Daniel is not the child I envisioned in my head.

But he is the child who occupies so much of my mind ....

And so very, very much of my heart.

He is my constant reminder that there are no guarantees in life.

And that we get only one chance to be happy ...

One life .... one complicated, messy, beautiful life.

And when it is over, there are no more opportunities to be happy.

He is my reminder that I should look for happiness.
And seize it when it is in front of me.

Because if my boy -- my beautiful, but challenged son -- can find happiness in his life -- and, oh how he does -- then surely, so can I.

I Hear Ya, Deb, and It Sucks

Don't even get me started about the link noted below ...

Been there, done that, although our insurance never even started paying for therapy for our son.

Autism: the disorder no insurance company wants to recognize.

Yep, Deb, you got it right: F&#% 'em.

http://thisismynewnormal.blogspot.com

Broken

There are broken things all around me.

Broken hearts, broken dreams, broken people.

Everywhere I look ....

things are broken.

My son's brain ... it never even formed properly...

It is broken.

My daughter's confidence, her sense of self, her sense of family ....

All broken.

My own dreams, my own heart ....

Broken.

I am bending down, trying to pick up the pieces.

But things keep breaking.

And I only have two hands.

When do the pieces become too numerous to pick up?

When do things become so shattered that they can never be put back together?

I don't know.

But I am still trying.

Truly Wonderful

So, a few days ago I posted about why I blog.

And I hoped for some new wonderful things about which to write.

These days, wonderful is a very tall order. I have been through hell.

But ....

Tonight I laughed at my daughter as I followed her and her brother around the block. They were on bikes. I was on foot. She looked at a driveway to see a child's chalk drawings -- she likes to partake in a lot of chalk drawing herself these days -- and she said with delight, "Oooohhhhh, look at those BEAUTIFUL chalk drawings," as if she had just seen a collection of masterpieces.

How could I not giggle?

How could I not laugh at her after our trek around the block, when she arrived in the driveway, jumped off her bike and did a little dance, screaming, "I made it home, F-I-R-S-T."

Yes, you did, Olivia. You did insist on being "the leader" the entire way, after all.

This afternoon, I helped my daughter pick out a mini-pumpkin. She was so delighted to be picking out a pumpkin (aahhh, the simple things). We had to get JUST the right one. The stem couldn't be too short or too long. The pumpkin couldn't be too blotchy or too flat. (Geez, do I look forward to picking out clothes with her someday.) And I marvelled that she came home and decorated the thing -- for a school project -- with absolutely no assistance from me.

Before our pumpkin expedition, I watched my girl force -- ahem, coax -- her brother onto McDonalds playground equipment.

Gotta love that never-give-up-spirit.

And after our bike trip, I watched my children succumb to hysterical laughter as Olivia sprayed both herself and Daniel with the garden hose. So much for her "job" of watering the new flowers, which, by the way, also bring a smile to my face.

That was just ONE DAY.

And I didn't even mention the best part.

I sat down with my son today to get him to work on a few things with me. I once put so much pressure on myself to "work with" Daniel. It is a tremendous burden, when you have a severely autistic child, to be both a parent and a teacher. You feel like you always need to keep your child from engaging in self-stimulatory behavior, like you need to keep him active and engaged each moment of the day. It is an impossible task. I have gotten better about giving myself a break from the guilt, but .... as I mentioned, I have been trough hell the past year. Some days, it was all I could do to function at all. I should have been focused on goals for my son, and, instead, I was focused on ... well, breathing.

But today, my boy did some things for me that I didn't know he could do.

It has been a while since I cheered for him like I did today. (And what a shame that is.)

I watched him smile at my pleasure, at my praise.

What a WONDERFUL reminder of how much I have to treasure in my children.

BOTH of them.

The one who amazes me with her intellect.

AND the one who amazes me with his ability to persevere, in his own way, despite a boatload of challenges.

It is a different kind of wonderful than what I once envisioned.

It is a different kind of wonderful than what many people could begin to understand.

And it is a different kind of wonderful than what some people can appreciate.

But today was wonderful.

Truly wonderful.

Why I Write

Someone asked me the other day what I get out of writing.

Well, I suppose you could look at the time of night when I write most of my posts and figure it is one way I battle insomnia.

But it is so much more ...

When your child has a severe disability, coping becomes one of the most difficult challenges you'll ever face. And I almost hate to use the term "severe" because, really, there are children in this world who can't even eat or sit up on their own, and my child can put away a tall order of pancakes before leaping into a pool and swimming like a fish.

But, still, my son IS profoundly affected by a severe disability.

He cannot talk.

He cannot understand a decent amount of what is said to him (and just how much is difficult to determine).

He is seven-years-old and would very much like to bond with children around him, but does not know how.

And he sees the world in unusual, "atypical" ways.

I truly believe that because he is so limited with respect to language, his other ways of relating to the world take on a depth that the rest of us do not understand.

He is fascinated by what he sees.

The way the leaves blow in the wind, the way water cascades from a fountain, the way sunlight forms shadows on the ground...

We might notice these things in passing.
My son is mesmerized.

He also is fascinated by touch.

He has to touch the ground when he sees that the surface beneath his feet has changed. He likes to press himself into corners. He loves the feel of soft, velvety fabric.

He LOVES my bare tummy. God only knows why. I could stand to do some situps. But he loves to wrap his arms around my waist and press his face into my tummy.

It is weird.

But it is part of what makes Daniel, Daniel.

And it makes me laugh.

But his challenges also break my heart.

Why do I write? And why do I write on this blog, in particular?

Because I know there are other parents out there going through this pain. I write because it helps to communicate with people who understand.

Because I feel very alone. And I am alone, in a sense, despite the fact that several people are in my corner, and I love them all. I write because it helps me deal with loneliness.

Because there are so many other things I could be doing to cope -- and most of them would be self-destructive. I write because it beats the hell out of drinking.

Because somehow, at the end of the day, I have to find some sanity. I write because I have to have a way of clearing my head.

Because there are good things, happy things, happening in my life every day, right alongside this beast known as autism. I write because I don't want to forget the things that make me laugh.

But there is one more reason that I write. A deeply personal reason ... so incredibly heartfelt that only the few people who love me best know what it is. It may be THE biggest reason I write, but it is the reason I will keep to myself.

And now it is time to crawl into bed and stare at the ceiling ... time to count my blessings despite the many sorrows .... time to close my eyes and make wishes ... maybe even whisper a prayer.

Tomorrow is a new day.

I hope it will give me something wonderful about which to write.

Just Take It

My boy is getting older.

And stronger.

And things are not what they should be. They are not what I wanted, what I hoped for, even after I began the difficult process of accepting the "A word" and altering my dreams.

There are moments when the autism -- my son's autism, the autism that fills my family's days -- is so profound that it is like a slap to my face, a punch to the gut, a kick in the ribs .... a beatdown, when I am already face first in the dirt.

These moments come when I feel like my son is tormented by his inability to communicate with the world around him.

I cannot begin to imagine what it must be like to live inside his world.

I am rarely at a loss for words. The irony is not lost on me: how is it that MY child could have THIS problem????

I see how much he suffers and I wish I could give him my voice.

The medical geniuses of this world have discovered how to transplant hearts and lungs, kidneys and parts of livers .. they can pull bone marrow from one person and use it to cure cancer in another, they can remove skin from part of a person's body and graft it some place else ....

So, why, oh why, can't someone figure out how to take my voice and give it to my child?

They could take it. I'd go without.

They could take the part of my brain that controls language.

They could take the whole damn thing.

If it meant my child would no longer struggle.

I am not sure how much of my gray matter is still working anyway.

This world of autism is a lonely place.

It is so damn lonely for my child.

But it is lonely for the ones who love him, too.

It causes us to worry endlessly, to doubt ourselves, to grieve the loss of dreams.

It causes us to do things we never, ever would have dreamed ourselves capable of doing.

I smile at friends as they talk about the achievements of their children. I would never want them not to share.

But, wow, are there reminders -- everyplace, at every turn -- of just how much my life, and my family's life, is not what I had expected it to be.

So, figure it out, medical world.

Figure it out for me.

If it means taking my voice, then just tell me how and when.

I'll do it.

Just take it.

As long as you give it to him.

Star Light, Star Bright

My daughter recently asked me to help her wish on a star.

Where did she learn that concept, I wondered????

TV? A book? A friend?

I just know it wasn't me.

Sigh ....

Add it to the list of things I should have thought of to teach her but didn't...

Anyway, how delightful that she wants to do this -- to say the words I used to say when I was little, words I used to believe in ...

Just like I beleived in Santa and the Tooth Fairy ...

Just like I believed in magic.

So, off we went to the driveway and we said the words together:

Star light, Star bright
First star I see tonight
I wish I may, I wish I might
Have this wish I wish tonight

She asked to say it again.

No, just one wish each night, I told her. Only on the first star you see.

If only ...

If only it were that simple ....

And, yet, I found myself wishing with my daugher that night.

And I wished again when she asked the next night.

I closed my eyes and said the words I thought in my head... and felt in my heart.

It wasn't even her brother for whom I wished ..

even though I would give anything, do anything, to see him no longer struggle with this horrible thing called autism.

No, it was not my boy for whom I wished ...

even though I wish for him all the time.

It was for someone else.

If only it were that simple ....

To Sleep, to Dream, to Speak

My five-year-old daughter has been talking in her sleep a lot lately.

And what she says sometimes worries me.

As if I need more to worry about ....

Just a few minutes ago, as I sat on my couch with my lap-top and Cheezits, wide awake despite my fatigue, I heard her scream out from her bed:

"I can't do this, I can't do this, I can't do this."

Geez. What in the hell is she dreaming about?

I think about the possibilities.

Is she thinking about school?

I enrolled her in an excellent, but hoity-toity private kindergarten this fall, after three years at a preschool where the primary focus was on being a good friend and helping those who need it (i.e. the students in the class who are on the autism spectrum).

Now she sits each day in the world of "perfection." Her classmates probably have been drilled with phonics flashcards since the day they started eating whole foods. Their mothers pull up to the school in Escalades and Lexus SUVs,in full makeup despite the fact that they are wearing Nike gym clothes -- probably headed to pilates. And my poor daughter marches in with her flip-flop-wearing, barely-holding-it-together-mother who might have forgotten to brush her teeth the night before.

I threw her into this new, challenging -- "Let's all read from our readers even though we are barely five-years-old" -- environment. I put her there even though I have not given her the attention she deserves, even though I have not taught her the things I would have if I had been living a different life -- a life untouched by autism.

Sink or swim, Olivia.

Is she thinking about her brother?

My darling daughter is two years and two weeks younger than her brother.

But she surpassed him developmentally when she was just ten-months-old.

And, every day, I see the signs.

I see the signs of a sister who loves her brother as much as she worries about him.

I see the signs of a girl who understands that her brother is different and disabled, and isn't at all ashamed, but is sometimes very annoyed.

And who wouldn't be???

Why should a five-year-old girl feel the need to race after her seven-year-old brother if he ventures down the aisle at Walmart?

Why should she tell me in the middle of a department store, "You have GOT to hang on to, Daniel. We can't lose him!"

Why should a five-year-old be telling other children about "autism," in situations where even her own mother frequently struggles to find the words.

It is not fair. It is not right.

But it is her reality.

Is she thinking about me?

Does she realize just how essential she is to her mother's happiness?

Does she know that she is the ONE THING that has kept me from completely falling to pieces the past two years?

Does she know that, without her, I don't think I could get out of bed each morning?

Does she realize that soemtimes when I hug her before she drifts off to sleep, that I can barely bring myself to let go? That I put my face next to hers and take in the very smell of her, the very feel of her cheek against my own?

Oh, dear God, no wonder she says these things in her sleep .....

I have to do better. I have to try harder...

To make her see how beautiful she is.

To make her understand that my feelings of anxiety and panic and sadness have NOTHING to do with her.

To make her feel at peace.

I had a moment last Saturday evening.

A very powerful moment.

A wonderful moment.

And that is saying a lot.

Because in the past two years, I have had some hellish moments. And they just keep coming.

In waves.

Waves ferocious enough to knock me over. To pull me under. To crush me.

But I am trying to keep my head up.

And swim against the tide.

This moment last Saturday involved a woman who has become so dear to me that words cannot express her value.

I spent the afternoon in her home. My daughter played with hers, and I bombarded her house with my sadness, my anxiety.

You'd think she must be so sick of me. Talk about a downer of a friend.

But she still calls every day. She listens. And every word she says to me is said in love.

After an afternoon of watching football (let's hope there are better things waiting for the Horns next year, BTW), we went to a nearby park with her two kids and my daughter.

I watched my daughter being so happy with hers. I was so grateful for the opportunity to see her being a kid without any worries about autism. Her brother wasn't there for her to worry about, and, every now and then, she definitely deserves that. (Thank you to my wonderful parents for making sure that my beautiful boy was happy and well cared for that day. He couldn't have been in more loving hands.)

It came time to go home. My daughter wrapped her arms around everyone and gave good-bye hugs.

I reached into my friend's car to kiss both of her kids.

And it happened.

I have told my friend before how much she means to me. If she ever needs blood, a kidney, bone marrow, part of my liver .... its hers. And I have told her, if there ever came a time when her kids needed someone to care for them, I would gladly do it.

I meant it. I would do anything for this woman.

But, there was something in that moment, when I reached in and placed my hands on her children's faces and kissed them both.

I felt it. If there was ever a reason when, God forbid, their parents were not there .... and they needed someone ....

I would love these two beautiful children every bit as I love my own.

I am probably one of the LAST people she would choose for a guardian, given my own messy life and multiple problems.

BUT, man, would I love those children.

It surprised me just a bit -- this feeling that I could love any kids as much as I love my own.

But there it was.

A reminder that my heart is still working. And that it is capable of new love, despite all the beating it has taken.

It is a good thing to know.

When Class Lets Out

It is my favorite moment of the day, five days a week.

Those mothers out there who have a child with severe autism, as well as one or more neorotypical children, will know what I am about to describe.

Because they all have a moment like it.

A moment each day when their hearts nearly burst right out of their chests.

For me, it is the moment when I pick my daughter up from school.

She attends a private kindergarten. She turned five just two days past the age cut-off for public kindergarten. I did not want her to sit out one more year, and she can attend first grade at our local public school next year if she attends private kindergarten. So despite the significant cost of tuition, I signed her up for a great dual language kindergarten close to our home.

At the end of the school day, teachers bring the students out into a large open area in the middle of the building. The kiddos sit in a line with their classmates and wait to be picked up.

Parents walk down a long hallway to get to this waiting area. You can't see the children until you get to the end of the hallway and look around the corner.

THAT moment -- that moment when I peek around the corner and spot my daughter -- is my absolute favorite moment of the day.

There she sits, totally in the moment, always with two or three or more friends.

TALKING.

Talking, talking, talking.

Giggling, imagining, showing off toys that she stashed in her backpack on the way out the door that morning.

Sharing the secrets of little girls.

I stand there as long as I can before she notices me or before I start to wonder if the teachers think I am a freak.

I want to freeze time.

The other parents come and go. They round the corner and holler for their children. They exchange a few words with the teacher and off they go.

"WAIT," I want to tell them. "Stop and look at your child. Your son or daughter is amazing. Look what your child can do. It is a gift."

It is only a moment.

But it is such a treasure.

Lovey

For just one day,

I would like to be my cat.

What my daughter said to me a few days ago:

Mama, do you know what true love is?

(Oh, dear God, don't get me started, I think to myself.)

What is it, Olivia?

It is when a princess and a prince love each other more than they love themselves.

Well, take out the prince and the princess stuff, and ....

WOW.

Where did she come up with that????

OK, so it is a bit simplified.

But what a beautiful description of an ideal.

Whatever true love is, I hope someday my daughter finds it.

And if she does, I hope she never lets it go.

Someone recently told me "that there is nothing worse than autism."

How do I start to respond to that?

Some people would probably wonder if I consider that statement an attack on my child.

I do not.
I know the speaker did not intend it that way at all.

You can despise the disorder while loving someone who has autism.
I do it every day.

But, without a doubt, that statement makes me incredibly sad.

Sad, because I know as well as just about anyone what it means to hate autism.

It really does suck.

It sucks to see your child struggle to do what most of us do thousands of times a day without giving it a moment's consideration -- we open our mouths and express ourselves. We chat with friends. We order lunch. We tell somebody a funny story, or complain about life's struggles, or reach out to somebody in need with kind, compassionate words.

My son cannot even say his own name.

The statement also makes me sad because I know the dread concerning the future that lies behind those dark words.

Somewhere along the way I have learned to concentrate more on the here and now. It was NOT an easy thing to do. And that is not to say I don't worry about the future.

I sooooo worry about the future.

But to think about it every day would be to make myself crazy.
And I truly believe that somehow, someway I will figure things out for my son as he and I both age.

Call it dumb, call it fantasy -- and some people have -- but I just believe.

I have moments of doubt. I have many moments where I feel like a failure as a parent. I wish to hell and back that my son would one day be able to talk to me.

I wish my child did not have autism.

But I would never say that there is "nothing worse than autism."

Even though I know the pain that drives the sentiment.

My child IS HAPPY. He mostly lives in his own world. But the moments when he brings me into that world are so spectacular -- they are filled with the absolute purest form of love I ever have experienced.

I believe that my child's love is the closest reflection of the love of a Heavenly Father (assuming there is one).

Because my son truly loves unconditionally.

When he likes you, he truly loves you.

He loves you when you've gained 20 pounds.
He loves you when you've had a cranky day and have shown him little patience.
He loves you even when you fail him.

I ought to know.

And there definitely are things worse than autism.

I have had some experience with that as well.

One of them is losing someone.

One of them is seeing someone lose himself.

And one of them is wishing so hard that you could help someone deal with what is the most tragic pain they have ever experienced ....

And not finding any roadmaps.

One of them is feeling helpless.

I Want to Believe in Angels

Spend all your time waiting for that second chance
For the break that will make it ok
There's always some reason to feel not good enough
And it's hard at the end of the day
I need some distraction, oh, beautiful release
Memories seep from my veins
They may be empty and weightless and maybe
I'll find some peace tonight
Sarah McLachlan,
In the Arms of an Angel


If only I knew ....

that there would be an angel waiting for me at the end ...

someone who would wrap his or her arms around me and pull the pain from my soul...

and that the viciousness hurled at me from someone who had no business being any part of my family's story would somehow be erased from my mind.

If only I knew ....

that there would be an angel waiting in the hereafter to tell me that my heart would be healed ...

someone who knew the pain I felt in this life because she witnessed it from above ...

and that the agony of heartache would be replaced by peace and calm and sanity.

If only I knew ....

that there would be an angel waiting for my children one day, too ....

someone who would make sure that whatever hurt they suffered in their lifetimes was replaced with the joy they truly deserve ....

and that everything would be fixed for them in Heaven:

the gaping hole in their family would no longer hurt them,

my daughter would no longer worry about being her brother's keeper,

and my son would find his voice.

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back
The storm keeps on twisting, you keep on building the lies
That you make up for all that you lack
It don't make no difference, escaping one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees
Sarah McLachlan


I want to know that one day I will feel more than what I am feeling right now.

I want to know that one day everything really will be OK.

I want to believe in angels.

Faces With No Names

One of the things I remember from being in the hospital after giving birth was how the nurses came by to ask how much pain I was in. They pointed to a sheet posted on the wall -- the same little graphics I suppose most hospitals use -- with the funny faces accompanying a pain scale of one to 10. The faces started off looking pretty normal and then progressed into what looked like complete agony by number 10.

You could line up the best artists in the world, but none of them could draw a face for this.

And there ain't a number high enough.

And, yet, I keep reminding myself that there is greater pain in this world.

I know there is.

There are people whose children have died. Many, many people.

There are people who have lost their entire families.

People who have survived war, ungodly natural disasters, unspeakable violence.

There are people whose children have been kidnapped and who have only the worst to imagine and fear.

It could be worse, it could be worse, it could be worse.

Wasn't I saying the same thing some time last year?

Funny thing about hitting rock bottom: when you realize that what you THOUGHT was rock bottom was merely midway down the ladder, you wonder if you will ever have the strength to get back up.

Yep, I am a rollercoaster, people. And I am ready for the carousel.

Where is it?

I ran a pretty darn good race last Saturday, all things considered.

And, man, were there a lot of things to consider...

I ran, I coughed, I wheezed, I sweated profusely, and I finished .... and I didn't even come in close to last.

And what do you know?

I can run a good race just three weeks after discovering the unthinkable ...

And ....

I still have two parents who would climb mountains for me.

I still have a best friend who repeatedly reminds me that I am worthy of love and respect.

And she listens, with all the concern and compassion of a saint.

I still have other friends, too, who remind me how much they worry and care for me. And none of them -- not a single one -- would ever judge or make light of the terrible situation in which I find myself.

I still have two children who love me very much.

And I even have a dog, stubborn and ugly but loving and sweet, who is currently covered in pink and purple hair glitter, courtesy of my daughter.

Life goes on.

Someone recently told me that I should spend "all of (my) extra time being a better wife instead of blogging and training for marathons."

There is just so very much I can say about that comment ....

But I won't.

Instead, I am going to lace up my running shoes and participate in a 5K this evening.

My time will stink. I am exhausted. And I am coughing and wheezing up some nasty looking stuff.

But I will finish.

At least that's what I am telling myself. Rah, rah.

Later.

It was, by far, the happiest day of my life.

First baby.

A boy.

A nine on his first Apgar, followed by a ten.

Eight pounds, 10 ounces.

Ten fingers, ten toes.

A head full of hair.

Everything was perfect.

But it wasn't.

How could I have known?

I gave birth at the hospital where my husband worked. Everybody knew my husband. The people poured into my room. One by one, they came. All day long. Who needs sleep after labor and delivery, right?

But I didn't mind. Seriously. Because I knew they were coming at my husband's urging.

He was so proud.

"Did you hear? I had my baby. Go see my boy. Room 255."

The nurses were so tickled as they described his words to me.

How is it, when two people can so joyously bring a life into this world, when a baby was so very wanted, so very cherished from the second the line showed up on the little pee-soaked stick .....

How can THAT turn into THIS.

Why can't the two people who need each other the most find each other in the midst of all that pain?

Autism really knows how to kick ass.

And I am so very sad.

Fixing Things

Since my husband left last year, I have learned that I can fix things.

Not a lot of things.

But a few.

The faucet handle just fell off one day and clanged into the kitchen sink.

I found the part that was broken and called the number on the handle. I ordered a new part and waited for it to arrive. I took out a wrench -- I think it was a wrench -- and a screwdriver, and I got the sucker back on.

OK, so it is wobbly.

But it works.

The light bulb went out in my Sony television.

I got a new one, took the front panel cover off the unit -- again, using a screwdriver -- took out the box with the bulb and slapped that new baby in.

My lawn mower kind of sucks. It is old. Sometimes I have to finagle for minutes in the blazing sun to get it to work. Sometimes I even have to take the little front cover off -- again, with a screw driver -- when I have primed the mower with too much gasoline.

But I get the lawn mowed eventually.

Yes, I can fix a few things.

But not the most important ones.

I cannot fix people.

I cannot place my hands into my son's brain and reconnect the circuits. I cannot redirect all the information buzzing in his brain. I wish I could take the chaos, the cacophony, the lack of clarity and smooth it out.

I wish I could fix the part of him that makes life so difficult for him.

I wish I could fix the part of him that keeps him from understanding how to fully join my world.

I wish I could fix the part of him that blocks the words.

But I can't.

And nobody can.

And it is OK.

It is OK because my son is wonderful.

It is OK because I know that he is happy.

It is OK because there is so much of life that he enjoys -- every time he leaps into a swimming pool, he is at peace. Every time he buckles the belt in a roller coaster car, he is filled with a zest for life that many people never experience. Every time he snuggles with my mother in the love seat in my living room, he knows he is loved.

And every morning, when I lift him from bed (Yes, I still lift him from bed even though he is seven) .... and he wraps his arms tight around my neck and his legs tight around my waist .....

I know how much I am loved.

It is OK because ....

Well, it has to be ....

And because it just is.

You are a thief.

You steal from children.

From the time they are in the womb, barely identifiable on the ultrasound machine.

All the mother can see is a tiny blip on the screen. The image looks like a tadpole.

But then she hears it -- a heartbeat. Strong and steady.

And the tears flow.

Tears of joy -- unavoidable tears springing from her soul, from this unreal feeling that her life will never be the same. From this instant, every decision will be made for this child, this person who isn't even here yet. He might as well be. Because he will be all she is thinking about for the next nine months....

And for the rest of her life ....

And you were there, the whole time, you mother f'er.

Just lurking.

Ready to attack my child.

And rob him of his words.

You came into my home.

You robbed us of our joy.

You assaulted us.

You threw at us every weapon in your arsenal.

Fear, insecurity, worry, self-doubt, guilt ...

PANIC.

I didn't want to hear the words.

It was almost six years ago.

I couldn't stand to hear what my son's father was thinking.

He knew, he was positive, he was panicked.

But I couldn't hear it. It wasn't possible. My child was too beautiful, too happy, too lovable.

To accept the label would be to insult my baby.

I couldn't do it.

And you know what you did to us, you son-of-a-bitch, you drove a wedge so deep, so deep, so deep .....

You made me doubt my worth as a woman, as a mother. God must never have wanted me to be a mother. I must have done something horrible in my life to bring this upon my child.

And I cried, and I cried, and I cried.

I did everything they told me to do. The speech therapy, the special needs preschool.

And there you were, the whole time, swatting down my hopes. Laughing at me.

Laughing at us.

Somewhere along the way you and I got to know each other on a first-name basis.

I could say your name out loud, even though I wanted to kill you, to shoot you, to throw you to the ground and kick you over and over and over. If I could take a bat to you, I would swing until my arms popped from their sockets, until I fell to the ground.

Autism, autism, autism.

My family spilt up for you, for a chance to combat you, for some hope that we might be able to conquer you.

And you laughed at us.

You robbed my daughter of a sibling with whom she can talk, with whom she can share her wonderfully creative mind in play. You made her a caretaker when she needs to be the one being cared for.

You bastard.

Oh, you must have had some fun with us. Can I break them? Will they ever find any joy in life again? Will they lose sight of what is important? Can I bring them to their knees?

Well, congratulations, asshole.

You did bring me to my knees, in desperation, in panic, in some worthless attempt to keep things together.

I don't believe I lost sight of what was important, not when all was said and done ....

But .... I am only one person.

In the end, you got what you wanted. You had some help in the form of a complete stranger to you.

And you ripped us to shreds.

But I know this, you may have robbed my child, you may have destroyed my family, but I see the joy that lies within my boy.

There is no purer love than what is in his heart.

And there isn't ANYthing you can do to screw that up.

Now go to hell.

Remembering Autumn

On August 23, 1991, a beautiful girl left the world.

She was a neighbor and dear friend. She often sat next to me in the pews at our church and sang her heart out, even though she had one of the worst singing voices I have ever heard.

She was 15-years-old.

The night before she died, I drove her to our high school football team's pre-season scrimmage. I was leaving the house when I heard the phone ring and almost didn't take the time to answer it. It was my friend, Autumn, calling to ask for a ride.

I saw Autumn briefly at school the next morning, but that night going to and from the football game was the last chance I had to talk to her.

I still can recall the details of our last conversation. I even remember what she said to me as she got out of my car -- it made me laugh, and it was so typical of the delightfully sweet things Autumn so frequently said.

I watched her walk to the front door of her home, and I waved to her father as he opened the door for her.

Twenty-four hours later she was gone.

I sometimes get so caught up in the difficulties of my life. (Just read yesterday's post.) It certainly does not look anything like the life I envisioned 5 or 10 years ago. When I was pregnant with Daniel, I worried about any number of things that might go wrong, but I never actually considered the possibility that my child would be unable to talk. And don't get me started about the other knock-out surprises and disappointments life has thrown my way .... Suffice it to say life has been more difficult than I expected it to be, even though I never once believed any of us are entitled to a fantasy existence.

But all of that being said, I know how much my dear friend would like to be here in my shoes. I look at her picture on my dresser and am reminded that unfairness is a universal truth -- that life can deal you a perfect hand just as the leg breaks on your barstool.

She was a beautiful gal, my friend Autumn. And not just because she had long, beautiful hair with golden highlights, a radiant smile and cheekbones to rival Cindy Crawford's. She was a beautiful soul. I can remember only a few girls from high school who never complained about another girl, never criticized, never ridiculed, never judged. Autumn was one of them. I never heard her say a mean word about anyone.

If she were still here, she would be one of the people who do not judge my son. She wouldn't look upon him as "weird." She would first his see his beautiful smile and his loving nature, and she would bend down to his level and try to engage him.

She has been gone for 19 years, and, yet, I still think of her pretty much every day. I remember how we flirted with the cute, older boy who lived down the street, like a couple of silly, adolescent girls. I remember how we planned the things we were looking forward to that school year. I remember how I looked for her each Sunday morning as I climbed the steps to church, so eager to rush off with her and some of the other kids our age. We were way too cool to sit with our parents, after all.

So many memories come back as I sit here thinking of her right now ...

Oh, how she loved life.

If there was anything I liked about Autumn more than her sweet nature it was that singing -- that terrible, off-key singing. She knew how badly she sang. We joked about it. If she saw me start to frown, she would sing even louder, with a smile on her face and a gleam in her eyes. "So who cares that I can't sing," she would say to me. "I like to sing, and it is church. Who is going to say anything?!"

I think about her carefree, joyful attitude and wish I did a better job of emulating her spirit.

I think about how many songs she never got to sing, and I am reminded of how glad I am to be here on this Earth, laughing with friends and loving my children.