June 27, 2010

Staying Connected

I had to take a trip last week to the city where I once lived with my family for more than seven years.

I worked two jobs, made some wonderful friends, and had some great neighbors there.

I gave birth to my children there.

I left that city not even three years ago. Not that long ago, really.

Yet, as I drove those streets, those same streets I once drove every day ... I couldn't feel a connection.

I sat in the same lecture hall where I studied all those weeks for the bar exam. Was that really me? Did I really do that? When was all of that, anyway? I can hardly remember.

I walked through a shopping center where my son's former favorite restaurant is located. We went there weekly, my family and I. My son would watch the servers walk by with the pizza pans and crane his neck to see if someone was carrying his favorite, the kind drizzled with cinnamon and icing. I can picture my daughter in the restaurant high chair, with the little purple bib around her neck, munching on cheese sticks and staring in wonder at all of the people.

I can see the images of my children in that restaurant. But where are the other memories? Have I lost them just like I have lost so many other things in the past few years:

the dream of "normalcy" for my son,

the dream of a relatively easy childhood for my kids,

the dream of a partnership I believed to be unbreakable.

I returned, briefly, to the old neighborhood. I looked at the houses lining the road to my old home. I looked at the cul de sac where my son learned to run. I looked at the old house, with the big window in the room where my boy once slept, and the fence around the yard where our beloved Socrates is buried.

Why does it feel so much like something I saw in a movie or read about in a book?

Where is the connection?

Nothing about my life this past year has been anything I ever could have imagined. Nor would I have wanted to. It has been pretty damn terrible. And, yet, there has been some real happiness among the fears and worries.

I doubt I will ever look back on the past year and not be able to remember .... the depth of the lows .... and the depth of my love for the people who were here for me.

My life has been turned upside down. And, now, weirdly enough, it is being moved to its side. I am not at all sure what life has in store for me in the near future. I quite literally am living in the moment, not thinking much beyond today and the next few days.

It is not a particularly fun way to live, but it is something I have grown accustomed to.

There was a moment yesterday, at a birthday party for one of my daughter's classmates, when I was surrounded by three beautiful women, all of whom I consider friends. We never have much time to chat. Unless we are COMPLETELY away from our children, which rarely happens, we have to steal the moments to talk about our lives. They know that the past year has been hell for me. They listen with their hearts. They wonder about my children and how they are handling things. They make me feel as if, no matter what answers I come to with respect to the big questions in my life, they will not judge.

They provide me with a wonderful sense of .... connection. The best kind of connection -- not associated with any town, or neighborhood, or even a house, but with true, genuine feelings of friendship -- the kind of connections that truly are unforgettable.

June 18, 2010

Animals aren't lining up two-by-two, but perhaps it is time to build an arc

The Texas skies are sunny.
The air is hot.
My yard is dry.

But my carpet, on the other hand, is very, very wet.

Oh, autism, what you bring to my days .....

I've mentioned my son loves water. In one way, that is a blessing. He taught himself to swim at a very early age. He likes to swim along the bottom of pools, as if he is escaping from the chatter, noise and madness above the surface. When you watch him, and how he glides so effortlessly, he looks more like a marine animal than a kid.

It is fun to take him to water parks -- although it is a lot of work, too. He doesn't naturally appreciate the rules that go along with pools and water slides, so someone needs to be fairly near to him at all times. If he wants to go down a slide, an adult MUST be with him; otherwise he might unintentionally break in line or start to slide as soon as the person in front of him has taken off, instead of waiting for the lifeguard's OK. He also might turn to swim back to the end of the slide, so that he can watch the water cascading into the pool. And, boy, does THAT drive the lifeguards mad.

He also must be monitored at diving boards. He is getting better about the waiting-in-line concept, but still needs practice. He gets so excited every time he breaks the surface, that I still feel the need to remind him to "SWIM TO THE SIDE, Daniel!!! NOW." Otherwise, he just might hang out under the board, prompting any number of whistles from lifeguards and shouts from kids waiting their turns.

(Note to lifeguards: when there is a parent on top of things, DON'T BLOW YOU WHISTLE. I know it will be hard. That whistle is, like, really cool, for wicked sure. And I know this job probably represents the most authority you have ever had in your 16 or 17 years on this Earth, but, please, realize that your whistle is stinkin' annoying to the mother twice your age, and with 1 million times the life experience, and give it a rest.)

Ok, so he really likes water. Really, really, really.

Some of you autism mamas probably know where I am about to go with this.

Sinks are my son's friends.
And my enemies.

He stops them up, turns on the water, pours in anything that might produce bubbles, and well, ...... sometimes FORGETS to turn the water off.

It was a problem I THOUGHT we had nipped in the bud several months ago.

But it recently re-emerged.

A few days ago, a kayak could have floated through my bathroom.

All I did was take a few minutes to color with my daughter. I forgot the door to my bathroom was open. (I have one of those "child-resistant" door-knob covers on the outside knob, just for this reason. My daughter can pry them off, but even my four-year-old girl appreciates the reason it is there.) Who knows how much time passed -- how much time does it take to flood a bathroom???? I walked into my bedroom, heard the sound of running water, and raced back to find both the hot and cold faucet-heads running full blast, and water was EVERYWHERE -- cascading off the countertops, flowing into and back out of the bathroom cabinets, and seeping into the carpet in both the bedroom and closet.

Water, water EVERYWHERE. (You guys probably know the Baby Einstein line, right?)

So, add to the list of things I have done for the first time since starting this single-parenting gig. I busted out the Shop Vac and fired that baby up. (Yes, I know, how does a woman go 34 years without using a Shop Vac, even if she is married? Well, I did, OK.) It sucks up water very nicely. But when there is enough water on your bathroom floor to fill up a kick-ass children's pool, it takes a while.

And, the carpet?????? Shop Vac, towels, fans, you name it -- I used it all. And it was still a full day before the carpet was completely dry. So, I can probably add household mold to the reality that is my life.

Before you write to me, know that I have learned my lesson. The stoppers have been removed from my sinks.

Want to know the BEST part?????????????????????

As I was cleaning out the soaking cabinets, I discover rodent poop.

Yes, there is a rodent in my house.

Is somebody screwin' with me????? Cause sooner or later, this life of mine might get to be a bit much. But, surely, just as soon as I find that critter in the traps now lining my bathroom.... surely that will kick-off a string of good fortune. Surely.

June 13, 2010

Damn it, I am one horrible mess. Damn it, am I screwin' things up bigtime. Damn it, I don't know if there ever will be a sense of normalcy to my life. Ever?????

So, what else can I do but remember some of the things my daughter has said to me lately.

What do you think it feels like to be a baby in a mommy's tummy?

Mama, I am sooooo thirsty. I feel like I have been walking through the desert.

Mama, I am so very thirsty. I really need a drink. I don't want to die!!!!

I want to have Adrian, Dominic and Cassie over to the house to put on a play. The living room will be the stage. But there won't be an audience because I don't want anyone to get fright stage.

Mama, do you know what makes me happy? YOU DO!

Chocolate chips, cheap wine, and a big ball of poop

When you cap off your night with two (maybe three???) glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened.

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain.
A great big pain.
Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances.
He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.
Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.

June 3, 2010

Jumping into Deep, Deep Waters

I have written before about why it is that I blog.

At first, I had to have an outlet to express anger... and hurt.

The anger is being replaced these days with acceptance.

The hurt is still there, but time really does ease the suffering, even if it doesn't completely heal the wounds.

I am surviving, but my need to write is just as strong as it was several months ago.

The traditional, hard-bound journal would meet that need, I suppose. But there is something so wonderful about "meeting" new people through this medium. I am meeting two groups of women with whom I have so much in common: (1) those who love a child with autism or other profound challenges, and (2) those who struggle with the demands of single parenthood when their children are so very young.

I even have met a mother who, at one time in her life, struggled with the demands of single-parenting a profoundly challenged child.

My therapist recently pointed out the privacy concerns with blogging. They are legitimate, no doubt. But I know me -- I know that a traditional journal might very well get lost in the chaos that is my life. And I know that, one day, I am going to need to look back on this past year of my life -- I am going to need to look back at the suffering, as well as the memories of people and things that managed to get me out of bed each morning.

I turn 35 in little more than a month. I look back at my life and realize that big, HUGE chunks are missing. It is as if someone took a giant eraser to more than a decade of my life. My twenties????? I could give you the basics. I could run down the years I graduated from what schools and the degrees I received. I could give you the details of my employment history, from back in the days when I actually received a paycheck.

I could tell you my children's birthdates, their weights, and their Apgar scores, of all things.

But I think the REAL memories, the meaningful stuff, is buried somewhere, lost behind the layers of sadness and disappointment that have made up the past few years of my life.

The birth of my babies ..... the most meaningful moments of my life... REALLY? Can I really remember so very little?

I just cannot take the chance that I will lose the memories of the things that are happening right now -- the many wonderful things that are happening alongside the difficult and the damn-near impossible.

If I don't write them down, the magnificent images and memories, I am afraid they could be gone in weeks, if not days ...

With that being said, I need to note just a few of the simple, extraordinary moments of the past few days of my life:

When I picked my son up from school today -- from the school for children with autism that he has been attending for just the past three days -- he wrapped his arms around my waist and hugged, and hugged, and hugged. He has always been a fairly affectionate kid, but he is getting close to seven-years-old, and the tender moments aren't as numerous as they used to be.

But, today, for some reason ... he wrapped those arms around me and buried that gorgeous face into my stomach and held on like I was the most wonderful mother in the world (even though I am nowhere close).

When I walked through Wal-mart a few days ago -- moments after taking both children to the bathroom only to discover that my buggy had gone missing and I needed to start my shopping anew -- I had a conversation with my daughter about strawberries.

"Eeewwww. I don't like them," she said.

"But you have never tried them," I said, "and they are delicious."

"And healthy," I add. (There are children in third-world nations whose diets are healthier than my daughter's.)

"But I don't like them."

"But you've never tried them."

"I don't like them, Mama, and that is just the way God made me."

OK, hard to argue with God.

And here is the best one -- the most fantastic memory of the past week. Over Memorial Day weekend, I took my kids to the indoor swimming pool in my hometown -- a huge, Olympic-sized swimming pool that both kids LOVE. The pool boasts two springboard diving platforms. My son managed to conquer his fear of diving boards last summer, and I was so very, very excited. My daughter, who has ALWAYS been much more cautious and timid than her brother, has never shown the slightest indication she would one day take the plunge.

Until last Sunday .....

I suggested she walk out on one of the boards, just as I have suggested numerous times before. But, this time, she didn't flatly refuse.

She asked if I would go with her, and I told her the board was too narrow for two people, but I would walk out on the other.

So, off we go. I walk down one board; she walks out on the other.

She wiggles, she squirms, she hesitates, she tells me she is scared.

"Do you want to watch me? I can go first," I say.

"Yes," she says.

And so I jumped, anticipating the dreaded wedgie that comes with the leap, never really expecting Olivia to follow.

I surface and look up at my little girl standing at the edge of the board.

"Stay right there, Mama, and catch me if I need you."

And BOOM, just like that, she is in the air.

I could barely process what was happening.

Really???? Just like that??? She has abandoned this fear that held her back, that kept her from even setting one foot on the board???

In just a moment, she decides to let go ... of the fear, of the hesitation, of the unknown.

And before I even have time to think about it, Olivia is flying through the air, arms outstretched, look of determination on her face.

Oh, GOD, how I love this girl.

She comes up, eyes-wide, disbelief on her face.

"OLIVIA, that was AWESOME," I tell her.

"I KNOW!!!!!" she says to me.

"That was the coolest thing EVER," I say.

"YEAH, IT WAS," she says. "Let's do it again.

Yeah, it was.

And I won't ever forget.

June 1, 2010

My Daughter, My Love, My One True Thing

Have I mentioned that my daughter amazes me?

She is spectacular, this four-year-old, 35-pound ball of drama and energy and love.

She is my ONE THING. Have you ever had one of those? Have you ever been at a point in life where you felt so tired, so sad, so disappointed ... and, yet, you had this one thing--this amazing-beyond-words-thing that kept you from falling to the ground in tears???

Even on those nights when you just give in ... you throw back your head and let the tears flow from the deepest part of your soul ... you let lose with those gut-wrenching, cry-out-to-God-sobs ... yet, you still think about your ONE THING. And you know that tomorrow will bring smiles, all because you have your one-thing, the one thing that is sure to provide you with enough love and laughter to keep on moving.

I wonder, sometimes, if my one-thing will turn into an adolescent who screams at me when I set boundaries with which she disagrees. Will she be angry at me for not managing to make things work with her father, as much as I wanted to? Will she resent all the times I made her wait, or told her to be patient, just so I could meet one of her brother's needs?

Will I be able to make life for her anywhere close to what I first envisioned when she was just a tiny image taken from an ultrasound?

I never once imagined, when I learned I was pregnant for the second-time around, that the baby I was then-carrying would one day be a four-year-old girl whose very existence would keep me from being overwhelmed with despair.

It sounds a bit dramatic, no doubt. But my daughter has been that for me.

The past six years have been a puzzle to me. I began to worry about autism early in my son's life, even though I didn't want to believe it, even though I couldn't bring myself to accept it for a while. And, wouldn't ya know, just as soon as the worries began, I learned I was pregnant again.

If it hadn't happened precisely when it did, well, there most likely would not have been a second baby for me. Even if I had wanted to "chance it," her dad most certainly would have been too worried. As anybody with a child with autism can tell you: once you have a child with autism, nothing about having a baby will EVER be "normal" again.

I question so much about the spiritual world. How, how, how can so many children, so many purely innocent children, suffer so many horrible illnesses, disfigurements and disorders, if there truly is a God? I don't know, and I can't ever completely reconcile reality with the presence of a God who actually plays a role in the ordinary, day-to-day lives of the people walking on Earth.

BUT ..... even if God isn't directly answering prayers, I frequently wonder if He is sending us signs. Or perhaps He is sending us gifts.

I frequently wonder if my daughter was sent as a gift-from-above for her brother. How can I not wonder when I see her chase after him in Wal-mart, after he decides to run down the aisle without turning back? She thinks about her brother in ways that transcend the "typical" brother-sister relationship, especially when the sister is supposed to be the younger sibling.

She accepts him for who he is.

She worries when she thinks he might be in danger.

She notices what makes him happy and calm, and she speaks up for him because she knows he cannot speak for himself.

She does ALL OF THIS at the tender age of four.

She is, without a doubt, a gift to her brother. I could live to be ninety, and I don't think I could ever forget the kiss she gave him this very morning, as he began his first day at his new school for the summer.

He kissed her back, in his own, sweet, Daniel-way.

Oh, my weary soul .... what a moment.

But now that I sit here, with the open bag of chips and the open bottle of Merlot before me, I know for-certain, that if Olivia was put on this Earth as a gift ....

I am the recipient.

As much as she does for her brother, as much as she will mean to him throughout the years ....

She will mean just as much, if not more, to me.

I so frequently worry how I am going to do the things I need to do, for myself and for my children.

I sometimes throw up my hands in despair, in disillusionment, and I wonder how I will make it through the next year, and all the ones that follow.

And then I think of that beautiful, amazing girl of mine, with the sweet, tiny lips, the dimple on the right-cheek, and the thick, dark eyelashes that will never really need mascara.

I think of her heart, so pure and accepting.

I think of her love, so limitless and unconditional.

She is my one, true thing, the joy that keeps my heart from breaking all the way through.

I don't know if I ever will manage, as her mother, to provide Olivia with one-tenth the joy and happiness that she brings me.

Probably not.

So I will just thank my lucky stars that she is mine, that I am so fortunate to have such a remarkable gift in my life, the amazing gift of my daughter.