January 28, 2011

I reject the Holland poem. I know moms who love it; some of them are my friends.

But not me.

My son is disabled. Profoundly disabled. And I am not happy about it, even though I love him dearly and celebrate the many aspects of his personality that make him a neat kid.

I currently am walking through life at a loss for what to say, which is unusual for me. So I want to note the post from a writer I admire. I identify, even though our children are the victims of different monsters.


January 18, 2011

My 25-Cent Take on Prayer

"That and a quarter will get you nothing."

Sad words.
Spoken by someone I love.
Referring to prayer.

I have mentioned before that my spiritual life is not what it should be.

I rarely attend church, even though I grew up going to Mass with my Catholic mom (and agnostic dad). A big reason I don't attend is because Daniel "cannot." We would receive too many stares, from too many ignorant people. And, in all fairness, he would be a disruption. (Although I think God would say, "So what? He is as much my child as any other." You know, suffer the little children to come onto Me, and all that.)

I also must confess that I am no Biblical scholar. I do, and believe, any number of things that the leadership of the Church would condemn.

But ....

I believe in a higher power. More specifically, I believe in God.

And ....

I would never, ever say that prayer is worthless.

I know many people feel that way. It doesn't make them bad people. Some of the smartest people I know are atheists or agnostics, and they are good, moral people.

But prayer is never meaningless. To even suggest a thing, I think, is insulting-- and, well, ridiculous. Even if the atheists are right, and there is no God, prayer has meaning.

When we pray, we recognize that we are not infallible. We acknowlegde our own limitations.

When we pray for others, we acknowledge our love for them. And, call me crazy, but I believe there is value to positive thoughts, expressed in a focused, sincere way. They sure as heck don't hurt anything.

When we pray, we reject evil. And without a doubt I believe there is plenty of that lurking in this world. All too often it is cleverly disguised--the "helpful" person is really just a shyster with a selfish agenda, hoping to manipulate, and willing to destroy those who stand in the way. I can't help but wonder if people who have turned from prayer with disdain have done so because they have been overtaken by a force of evil.

When we pray we are true to ourselves--our fears, our hopes and our insecurities.

And, perhaps most of all, when we pray, our hearts cannot help but soften.

I have prayed many times for my son, and what I have asked for has changed over the years, as I have reached greater amounts of acceptance with regard to his disability.

I will never understand how God operates. I do not expect to wake up one day and find that my child's limitations miraculously have been removed. I do believe, though, that prayer can only help me be a better mom--and surely the good Lord knows He has not heard a lot from me lately.

So, tonight, as I stop to consider the words I noted above--when I think about how uncomfortable I was with the sentiment--I vow to seek solace in some praying of my own.

I will acknowledge my limitations and ask for greater patience.
I will ask that He one day bring words, in whatever form, to my son. And to Clark, and Rhema, and all the children whose lives are touched by autism and developmental disabilities.
I will ask Him to help my daughter be the kind of sister her brother will need.
I will ask Him to heal my son's broken foot, and my broken heart.
I will ask that He help deliver my loved ones from evil.

And I will go to bed knowing that my prayers have meaning--meaning beyond measure.

January 17, 2011

My Daughter, My Foundation

My daughter watched her brother get his cast .

She witnessed it all.

His screams, his pain, his confusion.

She watched me restrain him. She surely noticed how much I struggled to hold him still--how he struck out in fear.

How did she process it all?

How can I know for sure? She is only five-years-old.

But I know that she is incredibly attuned to my feelings. She has been for a very long time.

I know that she must have sensed my desperation and my sadness, as I struggled to keep her brother still.

She was incredibly interested in what was going on, and she watched closely at first.

But, after a while, I think her brother's screams became too much for her, and she crawled under the table and hid.

I wanted to acknowledge her in some way, as I held her brother so tightly that I thought my muscles might spasm. I didn't want her to think that I had forgotten about her.

So I praised her for her patience. I told everyone in the room what a wonderful, helpful sister she was.

And I tried to reach out to her with my voice, even as I clung to her brother with everything I had, and counted down the minutes until the whole ordeal would be over.

"Isn't it amazing, Olivia," I said to her, "how doctors can fix broken bones."

Less than 24 hours later, my daughter says to me:

"Mama, do you know what I want to be when I grow up? I want to be an autism doctor."

I can hardly type the words without crying.

If I wondered what kind of impression Daniel's injury made on Olivia, I knew when I heard her words.

Isn't it amazing how doctors can fix broken bones ........ I want to be an autism doctor .......

I have no idea what my daughter will be when she grows up.

But I know that right here, right now, she is the person who keeps me smiling.

She is my rock, my foundation, my greatest joy.

Broken Voices, Broken Hearts and Broken Toes

Fractures of the fourth and fifth metatarsals.

The day started with me waking up a grumpy daughter who did not wish to rise. As she she settled down to eat her breakfast, I went to wake my nonverbal seven-year-old son, who had injured his foot the evening before.

Daniel is a monkey. He loves to climb. And even though he is careful, he takes risks. I know it probably sounds ridiculous to make those two comments in the same sentence, but parents with children on the severe end of the spectrum will understand. Let me put it this way: he appreciates that he might fall, but he is a boy who loves to climb.

And, as I mentioned, communication is not his speciality, so he always has preferred to take care of his needs, and especially his wants, himself.

Which explains how he wound up falling from the very high shelf in my closet--the one where I had stored the Halloween trick-or-treat pumpkins. I thought they would be out of sight, out of mind.

I should have known better.

I heard the crash. I heard the screaming.

That was last Thursday evening.

I thought, and hoped, he had an ankle sprain. Two people even looked at it and said as much. OK, so they weren't doctors, but they were guys who probably have had their share of ankle sprains.

But when Daniel woke up on Friday morning and still wouldn't put any weight on his foot, I began to get very scared.

I took Olivia to school and then began a series of phone calls to the doctor's office.

We can't see you until after 3, they told me.

Ah, that is not going to be good enough, I said. I have a nonverbal seven-year-old who might have a broken foot and I have to carry him everywhere. I also have a five-year-old. And, at the moment, I have no help (something I could have said many times over the past few years). I can't wait until the end of the day to start this process. He is in pain. Something needs to happen--now

Go ahead and bring him for an x-ray, they said.

Thank you, I will.

I drove 20 minutes to an unfamiliar hospital, carried my 55-pound child from the parking lot, placed him in chairs at two waiting places, filled out a ton of paperwork, carried him back to radiology, and then--joy-of-joys--restrained him while he got an x-ray of his foot.

Then I rushed out to the car so that I could pick up my daughter from school on time.

The three of us then went to the doctor's office, to await word of the x-ray results.

(Daniel was acting terribly. Somebody could have shot a film of his behavior in that office and played it for audiences around the world. "This is what a child with severe autism looks like," the narrarator might say. It was that bad. Of course, he had a broken foot, to go along with the major behavior problems that have sprung up recently, so what could I possibly have expected?)

Two broken bones.


I would gladly accept a dozen broken bones in my own body before wanting Daniel to have one.

Any mother would probably say the same. (Well, a lot would. I have seen a few very selfish mothers, both when working for the juvenile court system and more recently.) I say it with a little more zeal than most moms, though, because Daniel, is Daniel. And everything in his life is so much more complicated than it should be.

But life is life. And bones break.

So, what do we do, I asked.

You take him back to the hospital and go see the orthopedic specialist--immediately.

So, Daniel, Olivia and I drive to the hospital.

More paperwork. More carrying. (Thank goodness I have been lifting weights the past year.) And, then the highlight of my day, I get to restrain my son while two very nice people put a cast on his foot.

It was torture.

Pure, agonizing torture.

I held Daniel in my lap and did my best to pen his good leg and both arms. I had to grip both of his forearms with all my might. Whenever he got a hand free of my grasp, he would claw, hit, pull my hair, you name it. I dodged multiple headbutts, but he landed plenty.

I wondered what must have been going through his mind.

Why does my foot hurt so badly?
What are these people doing to me?
How long is this going to take?
I hate the feeling of this thing on my foot!
It hurts, it hurts, it hurts. How long is it going to hurt?

That was Friday afternoon.

He seems to have figured out that the cast is there to help him. He is motoring around on it quite well.

Indeed, he is climbing.

Four weeks with no swimming and no bath. Did I mention how much Daniel loves water.

Somehow, we will get through it.
But I can say this about life: sometimes when it rains, it really does pour.

January 13, 2011

Shine a Little Light

A few weeks ago, I went to Mass for the first time in a long time.

I say "Mass" instead of "church", which is my way of still identifying myself as Catholic, even though I list Planned Parenthood on my Facebook page and can't understand how any Church would restrict 50 percent of the population from its highest ranks (and I think God would be the first to say that the Church wouldn't be in as big a mess as it is in if it had some women among its leadership).

Why did I go?

Well, who really knows why I have done a lot of the things I have done recently.

My life is in shambles, which I suppose is as good a reason as you can have to attend church.

I was in my hometown, and I love the church I attended in my youth. It is such a beautiful church. It reminds me of happy days, and of some sad ones, too, like when my beautiful friend Autumn died--a friend who once sat next to me in the pews.

Being there reminded me of a time when my biggest worry was whether the oh-so-cute-boy from across town was going to be there, or if he had attended the earlier Mass. (You would have wanted to sit next to him, too--I am talking Hollywood-gorgeous.)

Oh, what happened to that girl ... did she ever really exist?

If she had only known what was in store for her, she would have prayed a little harder.

While I sat in my old church, I thought about all that I have experienced since that day, more than thirteen-years-ago, when I walked down the aisle at the age of 21.

What happened to THAT girl, and those dreams? Did they ever really exist?

The priest I knew and loved as a teenager has since left the priesthood--a sad loss for the Church, but a blessing for the woman he married. I was glad to see, though, that the priest who is now there was well-spoken and interesting, even if nobody can hold a candle to Father Larry.

I am ashamed to say that I was not familiar with the scripture that day--because I am not familiar with scripture as a general rule, may God forgive me.

But I can remember what he said about the person who was the subject of the scripture--how he had been given an amazingly important responsibility, one he did not expect, and one he was not certain he could handle.

The priest talked about the unexpected difficulties of life, and how God does not promise anything to us with regard to our days on Earth. He said that life is a lot like driving down a very dark, unfamiliar rode. Your headlights give you just so much help, just so much guidance--but even with the strongest lights, there is only so far you can see in each direction.

Man ...... no shit.

Are my headlights even working?

I am traveling down one very dark road. My son is disabled. So disabled that today, at the age of seven-and-a-half, he hurt himself by falling from a shelf he had no business being on--and he could not even begin to tell me what hurt.

I sat and held him as he cried. I clung to him and wished I could absorb the pain.

I wondered how in the world I could ever have been entrusted with this responsibility.

I never expected it.

I still am uncertain I can handle it.

But I have no choice.

Because I am a mother.

And may God shine a little light my way.

Because I sure as heck need it.

January 11, 2011

Waterfalls, Blue Skies, and Dreams of the Past

When my son was small, his father and I liked to take him hiking.

It was one of his favorite things to do.

My son's father would strap a heavy-duty hiking pack to his shoulders. Daniel would ride along his back. And off we would go.

We hiked along mountains all over northern Arkansas. It was something we began when Daniel was just six-months-old.

We hiked all over the Ozarks. It was as if we were the only three people for miles.

And I felt like the luckiest woman in the world.

Those memories are so glorious. So miraculous.

What happened?

I can remember the waterfalls.
I can remember the serenity.
I can remember the amazing blue sky one day when I looked to the heavens and thought ...

"I will never forget this moment. I will never forget how magnificent the sky looks right now. It is the most beautiful shade of blue I have ever seen."

After Olivia was born, we went on a few more hiking trips. She rode on my shoulders. She could never hike for as long as her brother. She loved it, but she would tire after a while and need a nap. Daniel, in comparison, was simply enthralled with his surroundings. If he did tire, he would fall asleep right there--in the hiking pack, on his father's shoulders.

One of our favorite hikes was at Petit Jean State Park. It wasn't as secluded as many of the other trails we hiked, but it was closer to home, and it boasted a magnificent waterfall. We'd start down a steep path that eventually began to wind along a creek. The trail ended at the waterfall. My children loved it.

When I think back, I realize that Daniel was much more mesmerized with the waterfall than was Olivia. She was looking at everything in her surroundings, and she intently would study any other hikers who came along the path. Daniel, on the other hand, was so much more singularly focused.

He always was.

You can see "the autism" when you look back--you can see the signals, the signs, the red-flags--even though it is so unfair to yourself to think about it that way. How many "typical" toddlers would have been mesmerized by the waterfall?

I can tell you: it is so incredibly difficult for any parent to accept that the beautiful child they saw enter the world is anything less than ... perfect.

It seems like a lifetime ago--those days when I would hike alongside Daniel and his father, with Olivia in the Snuggli.

What happened to that family?

The answers are painful. Autism is part of the story. And it is the central part.

But it is not the only part.

There are other influences.

An inability to see, and accept, the problem at the same time.
An inability to grieve at the same time, in a similar way.
And an inability to share, to communicate about, the grief.

There were other factors at play, too.

I have learned a lot during the past year about just how much trust can be taken for granted. And violated.

I also have learned a lot about just how evil people can be--how they can look upon a troubled soul and take advantage, thinking nothing of the pain that they are causing to so many people.

I have learned what it is like to truly feel alone at the end of the day.

But a part of me can still remember ...

what it was like to hike in those mountains with my children...

what it was like to listen to the cascading waters ....

what is was like to look upon that beautiful, perfect blue sky.

January 9, 2011

When You Get to Pick Your Family

"Mama, when I am an adult, I am going to live with you," she says to me from the back of the car, as we pull out of the neighborhood on the way to school.

Oh, the joy my girl brings to my life, which is no small accomplishment, given the pain of the past few years.

"Olivia," I tell her, not really sure how best to respond to her tender sentiment, "I would love it if you always live near to me."

"No, Mama," she says, quite forcefully. "Not NEAR you. When I get to be a grown-up, when you get to pick your family, I am going to live WITH you."

When you get to pick your family.

What an amazingly interesting choice of words.

I am frozen. And I wonder:

Are my daughter's words simply her way of trying to get her point across at that particular moment?

Or do they reflect so much more about how she views the world, how she sees family obligation, how she sees the choices that adults have when faced with real responsibility and difficulty?

My daughter has a brother with a severe disability. He cannot talk to her; he cannot listen to her. He cannot share in her imaginary games or her creative schemes. He cannot count down the days to Christmas with her, or pick out a gift for her brithday, or make fun of her glitter eye shadow and pick fingernails.

She knows he is different. She knows her relationship with her brother is far, far different that the relationships her classmates have with their siblings.

And it always will be.

I think my daughter's words reflect an early understanding that we are born into a family of which we have no control. We get the brother God (or circumstance) gives us. We get the parents life gives us. We arrive, we are, and we adapt.
But of course, there is a point when we do get a choice with regard to family.

I may sometimes read too much into my daughter's words. When you have two children, and only one of them can speak, you tend to listen that much more closely to what she says.

So, I may assign too much weight to what my daughter says to me.

But .... I would like to think... that my daughter's words signal that she already is forming an idea of what it means to be a family, and that the image in her head is defined by commitment.

I would like to think that she already understands that people make choices, and that those choices define who we are, and who we will be as family members.

And I would like to think that her words reflect that she really likes her mom, despite my many shortcomings--and that she likes her little family, flawed though we are.

I would like to think that her words, at the dear age of five, suggest something about the adult she will one day be.

January 3, 2011

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.”
--- Kurt Vonnegut

The people who really know me, know that I frequently deal with stress through sarcasm, through jokes.

I have managed, during these past two years, to make jokes about things that are not at all funny.

Why do I choose to "cope" with reality in such a way?

I am not sure.

Maybe I am just tired of crying.

I did that long enough.

I cried for my son, for the son I dreamed of, for the life I dreamed of.

I cried, and cried, and cried, until I couldn't even stand myself.

I cried for the dreams that seemed forever gone.

Sometimes, you deal with so much sadness, with so much shit, that the only way you know how to "cope" without tears .... is to joke.

But that doesn't mean my heart isn't hurting.

People disappoint.
Dreams are put on a shelf.
What could have been is replaced by what really is.

And life goes on.

I still cry sometimes. But I really am tired of tears. And so I joke.

It is a coping mechanism.

There could be worse ways, and I have been witness to some of them.

All I know is that I am still here, still breathing, still getting up every morning finding ways to laugh with my children.

Some days I do better than others.

But I am trying to choose laughter over tears.

Sometimes that is a tall order.

But if I can joke, surely I can rise again in the morning...

and find just enough peace to get through the day.

January 1, 2011

What child would DARE steal from Santa???

What child would DARE steal from the giver-of-gifts, the keeper-of-lists?

What child would DARE think she could outsmart the Ole St. Nick and all of his elves?


We didn't have cookies, so we left cupcakes.

And apples for the reindeer.

My daughter put each cupcake on the special plate that we left on the table. She arranged the apples just as she saw fit.

And low and behold ....

when nobody was looking, and she was supposed to be asleep, she sneaked over to that plate ...

And ate all the frosting off of those cupcakes!!!!

As if Santa wouldn't think he was getting robbed.

As if he wouldn't wonder who stole his frosting.

Sweet Lord.

If she can steal from Santa at the age of five, what in the world am I in for as her mother?

Happy New Year, everyone.