October 27, 2010

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.


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.

October 24, 2010

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.


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.

October 22, 2010

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?


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.

October 20, 2010

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.


October 19, 2010


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 ....


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.

October 18, 2010

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.

October 16, 2010

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.

October 13, 2010

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.

October 7, 2010

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 ....

October 6, 2010

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.

October 5, 2010

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.

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.

October 4, 2010


For just one day,

I would like to be my cat.