August 22, 2010

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.

Give Us a Break

My daughter has been having some behavioral problems lately.

I am not sure what to make of them.

I definitely am not sure how to respond to them.

With all the books on parenting these days, I don't think there is a single one that tells you how to parent the seven-year-old son with autism who does not talk, but, yet, has a lot going on in that sneaky little head of his, while simultaneously parenting the aforementioned child's four-year-old sister who just started kindergarten, is growing up in a single-parent household, and has more emotions than she knows how to handle, despite having a vocabulary that rivals that of many adults.

Yep, I don't think I am going to find any help on the shelves of Barnes & Noble.

Not any time soon, anyway.

Hey, maybe I just found my job opportunity.

In the meantime ....

How do I respond to the four-year-old who throws herself on the floor at the mall because she does "not have the energy to try on shoes."

How do I parent the four-year-old who tells me, "WELL, I just need YOU to cooperate with ME," after I tell her that I would really appreciate her cooperation during the shoe-shopping-venture.

How do I respond to her when she tells me that she is "done with" me, simply because I tell her she cannot get a new toy at Wal-Mart?

Keep in mind that I don't have a lot of time to ponder these questions while on the scene, because my non-verbal seven-year-old is there, too, and I can't take my eyes off of him for a second.

Sometimes higher-level-parenting has to take a backseat to reality.

I have a child who requires so much. He is walking through life with the physical capabilities of a seven-year-old, but the linguistic capabilities of an infant.

He can twist open the lid to a child-resistant-jar in a second.

He can turn on all the faucets in a bathroom, stop up the sinks, and leave the scene.

He can rise in the morning without anyone hearing, open a box of Popsicles, and eat them all, while leaving a few scattered about so that I am left scrubbing neon purple spots with carpet cleaner in the hope that the stains might disappear.

And, speaking of disappearing ...

I live in fear of it.

He cannot disappear.

My heart couldn't take it.

And I don't want to deal with police involvement and the resulting investigation by child protective services.

And so....

My daughter does not receive the type of responses she deserves.

She is not on the receiving end of a well-thought-out-parenting-plan.

She is, instead, on the receiving end of the do-the-best-I-can-even-though-I-am-stressed-beyond-words-and-feel-so-guilty-about-it-mess-otherwise-known-as-my-current-parenting-plan.

She constantly hears the phrase "in a minute" and she constantly waits.

She doesn't get to go to gymnastics class -- even though I know she would love it -- because she already takes tap and ballet, and I only have the energy to take her brother to the local rec center ONE night a week.

Oh, my, doesn't that sound awful???

Yes, I admit it. To take my daughter to dance class doesn't merely involve getting her dressed and ready and delivered on time. It also means taking her brother along. And keeping him busy and entertained and happy while we wait ...

In public.

And, even though I have been dealing with autism for several years now .... even though my skin is a lot tougher than it once was ... even though I am able to look people in the eye and tell them that my son "has autism" when the occasion requires ....

There is only so much I can do before I feel like crawling home, closing the blinds, and locking the doors.

So, my daughter has some behavioral problems.

How could she not?

I do, too.

Give us a break, world.

All of us. My boy, my girl, and, me, too.

We are doing the best we can.

August 19, 2010

Seven Years Ago Tonight

Seven years ago tonight,

I sat in a hospital room and stared at you,

not having any idea of the lessons you would teach me.

I realized that I knew very little about being a mother.

But I had no idea just how much I would need to learn.

I am still learning.

Seven years ago tonight,

I thought you were the most beautiful baby ever born.

I have discovered so much in seven years.

I have felt pain that is immeasurable.

And even more joy.

I have worried endlessly, and learned how to put the worry on a shelf.

But some things remain the same.

I still believe you were the most beautiful baby ever born.

August 17, 2010

A Big Hello from Texas (Or Should I Say, "Hey Y'all")

About a month ago, I installed this gadget on my blog called StatCounter. It is one of the coolest things I have seen in recent memory. (That's right, I don't get out much).

It allows me to see where my readers live, or least where they are sitting while they are reading my blog. I am amazed to know that there are people reading my blog in 20 states, as well as two contintents other than North America.

I can see how many old friends are reading back in my hometown.

It is such an honor when people want to read what I write. My hope is that people are learning something about autism from reading my stories about my son. I also hope I am able to convey the great joy that lies within my boy, as well as the joy associated with being his mother, even if that role brings upon challenges I didn't envision seven years ago!

I believe awareness fosters compassion, and that knowledge about autism will bring about opportunities for people who have so much to offer, even if they need some assistance in the process. I can only hope that my words about Daniel contribute to autism awareness in some small, but hopefully significant, way.

I always love to hear from readers, and I am so curious to know about the people reading from cities with which I have no connection. I have met many wonderful people through cyberspace, and I hope to meet many more. So, please, if any of you ever have thought about contacting me, don't be shy! And THANKS for reading.

August 16, 2010

Happy Birthday To ....

Happy birthday to the woman who ....

inspires me to keep running (never would have done that first half-mara without her),

amazes me with her patience and sensitivity,

cries with me through the darkest hours,

listens to my endless tales of woe (and my little moments of celebration), and

helps at my son's birthday party without being asked.

Happy birthday to the best friend a gal could ever have.

August 14, 2010

Welcome to Kindergarten, Take Two

My son's first day of kindergarten was enveloped in so many worries.

He is autistic. He could not, and still cannot, talk. His receptive language skills are limited.

Suffice it to say, I could not prepare him for the big day in any of the ways most moms would explore.

I had to wing it. And hope. And pray.

My mom was there that first morning. She kissed him goodbye and worried with me.

It wasn't ANYthing I could have envisioned when he was born, and life was still so .... perfect.

Now comes kindergarten-intro-take-two.

This child CAN talk. And talk and talk and talk.

I can tell her about kindergarten, about what it means to be a "big kid." I can answer her questions, or at least I can give it my best shot.

She knows how to make friends. She appreciates social norms. Heck, her mind works faster than mine does, and has for longer than I care to think about.

THIS time it should be easier, I told myself.

We pulled up to her new school today, my daughter and I, for the big Meet-the-Teacher-event.

I had explained to my daughter many times the purpose for the visit. I was glad to know that with each explanation, THIS child could appreciate the meaning of my words.

Preparation? So much easier when communication is not a problem.


Ah, not exactly.

"I do not want to go to this new school," my daughter told me. "And, besides, KINDERGARTEN IS STUPID."

She refused to put on the shoes she had kicked off in the car. She refused to walk to the building. She cried as we sat on the sidewalk outside her new school -- in 100-plus-degree-heat.

Families came and went. Happy, happy families. Skipping children. La-de-da.

I sat and baked in the Texas heat, and I waited for my daughter to stop crying.

"Olivia," I told her, "there comes a time in everyone's life when they have to start kindergarten. You really are going to like it. ... You are just going to have to trust me."

"OK," she says to me, "But will you carry me?"

Rip the heart from my chest, why don't ya?

What I could have told her:

I 'd like to carry you, Olivia, I really would. You have no idea how much I would like to carry you. Because I, too, am scared. I am scared at the thought of you taking yet another step that will carry you farther away from me. I would like to wrap my arms around you so tight, tight enough that it would fix everything ... your family would be intact, your brother would talk and play with you, and every little fear that travels through your mind would become a distant memory. .. I would like to carry you, Olivia, just as you have helped carry me through some of the saddest and scariest days of my life.

But I simply can't.

Because if I carry you, Olivia, I do not pay tribute to the child you really are.

This is what I really said:

"I can't carry you, Olivia. One of the first things you need to know about kindergarten is that nobody is carried. Everybody walks."

Oh, God, please forgive me.

She got up. She walked.

But, oh, goodness, was she fearful.

How I wish I could erase all the fears.

She will walk that same path on Monday morning.

My daughter struggled today, and who could blame her? Not only is she leaving behind the ONLY school she has ever known and a core group of friends who have been with her for three years, but she is dealing with instability, and her brother's autism, and a mother who is so scatter-brained that she left her wallet in a Wal-mart buggy yesterday and in a library three weeks ago.

But Olivia will make it, despite the difficulties in her life and despite my shortcomings as a mother.

This evening, several hours after we pulled away from the building that will become her home-away-from-home for the next nine months, my daughter crawled into my lap and said to me, "Do you know who is the best mommy ever? YOU."

It is praise I don't deserve, but will gladly accept. Because I, too, sometimes need to be carried.

How amazing it is to me that I can find my greatest comfort in the arms of a four-year-old girl.

August 11, 2010

When You Don't Have the Words, Link to Somebody Who Does

I am without words these days. Or perhaps there are just way too many swirling in my head.

Next week, my son turns seven and my daughter starts kindergarten.

One still does not talk. The other frequently startles me with her perceptiveness, with her amazing ability to appreciate some of the more extraordinary difficulties of life.

I currently am at a loss to put my thoughts about any of it into writing.

So, I will link to someone else's words, instead. I have mentioned before how cyberspace has allowed me to "meet" moms raising exceptional children, moms who understand what it means to truly celebrate and to truly worry. But there also are dads out there in cyberspace who can capture me with their words about their children.

Here is one of them:

He writes beautifully about his daughter and about himself. And I want to pull something from one of his recent posts because it is an excellent reminder of the most important lesson I could ever learn as Daniel's mom:

... I like to believe that I mostly err on the side of overbelieving in her. I've learned that everyone needs people who love them enough to overbelieve in them.

--with thanks to Robert Rummel-Hudson

August 8, 2010

If She Only Knew the Joy She Brings

More delightful words from my daughter, who turns five-years-old next month:

"Gram," she says to my mother while looking at a picture of a mother and daughter in a book, "Where do you think the father and brother are?"

"I don't know, Olivia," says my mom.

"Maybe they went to the hills of South Dakota."

"Well, OK, maybe they did go to the hills of South Dakota," says my surprised mom.

"Maybe they went to the hills of South Dakota so they could go prospecting for gold."


"Are you feeling better, Olivia," I ask her, after she has calmed down from a fit about something or other.

"Yes, Mama, I am. Only one of my feelings is still hurt. The rest of them are OK."


"Mama, I will stop being so cranky if you would just turn on a movie!!!!!" she says to me after several minutes of screaming because I turned off the DVD-player in the car so I could listen to some music.

"Well, no kidding, Olivia, I would stop being cranky, too, if I got everything I wanted, but, unfortunately, life just doesn't work that way."

August 7, 2010

Another link to another autism mama. Thank goodness for the Internet for bringing us gals together.

This one is particularly poignant to me because my beautiful son turns seven in less than two weeks.

August 4, 2010

Ten Fingers and Twelve Toes

Is it just me or has my blog been a bit of a downer lately?

Leave it to my daughter to brighten my world with a laugh.

If you are a regular reader, you know that during a recent visit to my hometown, Olivia took her first plunge from a springboard diving platform.

She had not been able to transfer that bravery to the city pool down the road from where we live .... until today.

I can't hang out in the water near the boards at our city pool like I can at the pool where she first started jumping, so that had been throwing her off. Even though she doesn't need me to be there, she just likes to see me waiting in the water before she takes the leap. Plus, our city pool is very busy, with dozens of kids lined up at the boards at any given time. It was a bit overwhelming for her.

But today was the day my four-year-old decided to join all those big kids jumping, diving, and cannon-balling their way into relief from this &%#@ 105-degree-heat.

She was VERY proud of herself.

As she told me, "This is the awesomest thing ever. I am going to do this all day."

After the second or third jump, she climbed out of the pool and asked me:

"So Mama, how many toes is that?"

Say what???????

I am trying to cheer her accomplishment, while keeping my eye on Daniel, who is a great distance away and who is capable of doing any number of things to cause grief -- swiping some kids' water toy, swiping some kids' sucker, swiping somebody's water bottle, you get the idea. Oh, and there always is the possibility that he might disappear from view and head out on his own to the nearby playground, and I simply don't have the time to be having a heart attack these days. So, I was a bit distracted .... what did she just say??? Something about toes?????

"What, Olivia?" I ask her, "What did you say?"

"You know, mama -- deep. How many toes deep is it?"


"Oh, FEET! Olivia, that water is 12-feet-deep! You are jumping into water that is 12-feet-deep, which is a WHOLE LOT OF WATER!"

Oh, thank goodness for the little things that make us laugh.

Thank goodness for my daughter.

August 3, 2010

She Takes the Words From My Brain, If Only My Brain Spoke as Wonderfully as She

My dear boy lost his first tooth when he was just a little bit past his fifth birthday. He has since lost three more.

There was no "Tooth Fairy" anticipation because he simply does not live in a Tooth Fairy world.

It is just one of those things that I try not to dwell on because to dwell on it is to drive yourself mad.

I don't even know what happened to that first lost tooth.
He lost it during school.
I knew it was loose, and I had been watching it for days.
I picked him up from school, and there was the hole in his mouth.

It only made him cuter.

But, wow, what a bittersweet moment.

Sigh .....

My pal, J, writes about it so eloquently, as she always does.

I couldn't have said it better myself. Seriously, I couldn't even come close.

August 1, 2010

Will You Be Sad When I Grow Up?

She did it again.

My daughter, my uncomparable joy... made my world stand still for a moment...

With her words, with her sweet heart, with her amazing combination of innocence and maturity.

Tonight, after the bedtime stories, she started her usual routime of nonstop chatter and questions.

"Tell me about when I was a baby," she says to me. "And then tell me about when Daniel was a baby."

They have become every-night requests. I tell her about the day she was born, about driving to the hospital early in the morning, about being hooked up to the monitors so that the doctor would know that her heart wasn't beating too fast or too slow--something she finds quite fascinating.

I tell her how her father and I waited all day in a special hospital room--waiting and waiting for her to decide she was ready to start her new life in this world. I tell her how when she finally decided she was ready, she practically burst right into that room. The doctor caught her and held her up for me to see.

"She is a girl," he announced.

Just as I had known, I tell her, because, dear Olivia, I just knew your were going to be a girl, just like I knew Daniel was going to be a boy. (And that is no lie. Even though I had decided during both pregnancies that I did not want to know about gender, I knew. I can't explain how or why, but it was more than a feeling. It was a certainty.)

And then I tell her how she opened just one eye, and scrunched up her face in a great big scowl... how she looked all the way across the room with her one open eye--taking everything in. And then she looked all the way back across the room. And then....

She closed that eye, opened up her mouth and let out one very angry yell.

THAT is her favorite part of the story.

I tell her how the doctor wrapped her up in a blanket and handed her to me, and then I tell her what I said.

"Hello there, sweet baby. Oh, how I am so happy to finally see you."

And she stopped hollering.

(I don't tell Olivia the other words I said to her in that moment: Oh, baby, have there been a lot of people worried about you. You had us so very scared.. I can tell her about all of that--the multiple ultrasounds, the delivery being moved to a high-level NICU, the stress, worry and uncertainty--some other time, many years down the road.)

The story varies a bit each time I tell it. Sometimes she wants to know the doctor's name. Sometimes she asks how big she was. Sometimes she wants to know about the day she came home from the hospital, and about how Daniel came to see her the morning after she was born. She likes to hear about the day Daniel was born, too, about how I had to work so much harder to get him to come into this world, almost as if he were dreading what he'd find. She likes to hear about how one of her first words was "Dan-ya" and how she would scream it as she chased her brother around the house, as fast as her little legs would carry her.

I am not sure why Olivia has this desire to so frequently hear about her birth and baby days. She is delighted by it all. I don't mind telling her about it, as often as she wants to hear it, even though it fills my heart with a certain degree of sadness. Sadness, because her life is so much more complicated than I ever expected it could be... because she is living in a home with only one parent... because all the dreams I had for what life would be like for me and my young children have had to be scrapped and reworked. BUT the story also reminds me of that moment when I first held her in my arms--one of the two best moments of my life.

So, finally, here is what my daughter did tonight that surprised me so. She took me on a completely unexpected path, and made me think again about how very much she has had to deal with in her less than five-years. This was our conversation:

Mama, will you be sad when I grow up?

Well, yes, Olivia, a little bit.

I will just have to live really close to you.

Sure, Olivia, you could live really close to me. I would like that. And you know, Olivia, you can live with me for as long as you want, right?

Maybe I'll just live with you forever, Mama.

(Oh, how very sweet, I think. How darling. But even though I am taken away by the tenderness of the moment, I also think that her words are probably similar to what many typical young children say to their parents. And then I am frozen by what comes next.)

And I could help you make Daniel talk.

(There was no holding back the tears. I hate for Olivia to see me cry. It has been unavoidable on occasion during the past year, but I try so hard to keep my tears from her. I simply couldn't do it this time. They came like a rainstorm. And I tried to find something meaningful to say.)

Olivia, there are going to be so many different things you might want to do when you grow up. You might want to be a famous dancer and dance on stages all over the world in front of cheering crowds. You might want to be a veterinarian and take care of sick animals or you might want to be the person who feeds all of the animals at the zoo. You might want to be a teacher just like all the teachers you love so much at school. Or you might want to be a police officer or a singer or a painter.

There are all kinds of different things you might want to do as a grown-up Olivia, and you are smart enough to do whatever you want. I want you to do whatever it is that makes you happy.

But I sure do love how you worry about your brother.

(She stared intently as she watched me cry but didn't ask about the tears. Instead, she rested her head on my chest.)

Mama, can we snuggle?

Olivia, I'd love to.