How Much Do You Know About Your Child?

I have been completing the paperwork to take Ainsley to a Developmental Pediatrician for a second opinion. The process started about 3 months ago. Fortunately, the forms are available online, and, when printed, make a stack of paper about one quarter of an inch thick.

That little pile of trees is intimidating as hell. I completed the same forms four years ago when I took Ian to the same place. Somehow, back then, the questions seemed easier to answer. It could be that I am duller than I was a few years ago. Every time I sit down with pen in hand, it is so difficult to get through more than three questions. By the time I read the fourth question, a raging headache is pounding on one side of my head causing one eye to close partially and blurring my vision.

My reaction would be completely understandable if this were a calculus test, or if one of the questions was "Can you solve the equation E = MC squared in your lifetime?" But it isn't. These are questions about my daughter. I should know the answers. Other than a few hours a week, she and I have been together for almost 5 years, non-stop. So why is this so damn hard?

This one gave me fits: "Describe your child as a young child." Assuming this is ages one to three, it is difficult for me to remember that far back. You'd think they were asking for a description of something I saw forty years ago. I just can't do it. I know I was paying attention because I was extremely worried she was going to have Asperger's too. I think I spent so much time watching for symptoms, that maybe I forgot to see the whole child. My own child.

So, I asked Steve to answer the question. He said, "She was happy." That's when I realized, Steve wasn't around much back then. He was traveling and working long hours. Ainsley seemed happy to him because every time he saw her was a reunion. He missed about six straight months of her changes. Six months of speech therapy and learning to talk. Six months of frustrations while we prepared to move. He never saw the struggles. In a way, he is fortunate that he didn't have to wonder if his little girl would ever say "da-da". To Steve it happened overnight - but it was really about 8 months.

I guess I'm on my own with these forms, and I've barely made a dent.

Now it's Thursday. The pile of papers is still sitting next to me, untouched since Tuesday night. This is crazy! Most of what remains is checking boxes labeled "yes", "no", or "sometimes". I know why I am putting this off. It's so obvious.

When I completed the same packet for Ian, I cried for 2 days after mailing it in to the Center. It was heartbreaking to openly admit to someone just how difficult things were and how little we knew about how to help him. I don't want to feel that way again.

It shouldn't be that bad this time. Ainsley's symptoms are a little milder than Ian's, and we DO know what to do this time. Still, I know how dreadful it is to be honest with myself about these multi-faceted autistic gems. There are many angles to each one, many complications, sharp edges that cut holes in my heart and remove reason from my brain.

It takes moments of truth to make me see that this is not an end, it is a beginning.

One of those moments of truth happened to me this morning. Ian, through his tortoise-like morning rituals, gave me the opportunity to see that my eight year-old is capable of doing more for himself than I thought was possible. He does not need me to do things for him. Guidance and confirmation are often all the help he needs. Words. Not deeds.

We stood at the end of the driveway this morning, waiting for the carpool. Resting my hand on his shoulder that is now up to my waist, I whispered, "This is my big kid." I gave his shoulder a gentle squeeze and dropped my hand to my side, giving him some grown-up space from a mom who sometimes hovers a little too much.

With a hand gloved in knitted Spider Man (NOT Thomas the Tank Engine OR Star Wars!), Ian reached for my cold fingers and gave them a gentle squeeze back. "And you're my Mom," he whispered with great pride. Then he did something really amazing. He put his hands on my cheeks, looked me straight in the eyes, and kissed me on the lips, just like I do to him when I want him to know how important he is to me.

He understands. He gets it! He has already moved from "my little guy" to "my big kid" right before my eyes. And it seemed to take right around 49 minutes.

It's time to finish Ainsley's paperwork. It will be done today. I promise.

Either the Kid Gets Medicated, or I Start Drinking

Ainsley has been talking non-stop since she woke up this morning. Whenever she has been unrestrained by a seatbelt, she has been walking, usually in circles. Her topics of conversation change with every breath. I am so confused. Is she talking to me? To the dog? To R2D2? Am I supposed to respond? When I do, she tells me she wasn't speaking to me. Ian is like this every morning until his Adderall kicks in.

One of us needs drugs ... now!

The Joy of Raising a Daughter

One can never be fully prepared for the adventure that is raising children. You can read thousands of books about unbelievable topics and still find yourself surprised when you turn out the lights at bed time. Ainsley has been blowing me away lately.

I have confessed previously, possibly on several occasions, that Steve and I need to watch our language around the kids. Generally, Ian does not repeat what he knows is off-limits for a kid. He bought the line we fed him about having to earn the right to say certain words, and earning it means you have to be at least 21 years-old to cuss. Ainsley still thinks she can say anything she wants to, as long as she does it in the right tone of voice.

The other night, Ainsley was in the bath tub, playing and talking to herself as usual. Kneeling next to the tub, I tried to keep up with the conversation that was barely audible. The sentences didn't make sense. They all seemed independent of each other, and often didn't make a complete thought within themselves. Then, in a petite, princess manner, she calmly asked:

"What the hell are you doing?"

"What do you mean?" I inquired.

Then she repeated, "What _ the _ hell _ are _ you _ doing?" Each word given an equal, delicate, and precise stress.

"What the hell are you doing?" I stared at her and asked. She had no idea why I was intruding on her private conversation between the voices in her head and herself.

"Mom, I'm not talking to you," she replied.

"Oh, I see. Don't say 'hell', no matter who you are talking to," I scowled. She smiled slightly in acknowledgment.

She is already a smart-ass at the age of four. We're in big trouble. She reminds me of a comedienne I recently watched on Comedy Central. Tammy Pescatelli is hilarious! She is Sicilian (Ainsley is 1/4 Italian) and from Cleveland (not that far from Boston). She grew up in a family full of brothers, so you can imagine her sense of humor. Ainsley may only have one brother, but together they are the equivalent of five boys.

Tammy is famous for saying, "What da hell is wrong widch you?" in a great kid from da 'hood accent. This is my daughter in 20 years. Trust me. Not only will she survive growing up with Ian, but she is going to use her experiences to make other people laugh. I feel certain that colorful language is going to be a part of her bit.

How can it not be? She's a rebel, and she already like the "bad boys".

Last night as we cuddled in her bed, she said in her adorable little girl way, "Mommy, I want to get married."

"Oh, really? Who do you want to marry?"

"Anakin," she said with a shy smile.

"Ah-ha. I see," I said, realizing it was time to break the bad news. "There may be a little problem with that. Anakin is a character in a movie. He isn't a real person."

"No, Mommy," she protested. "Not the little Anakin. The big one!" as if that made a difference. No, of course not the little one. He would actually be somewhere close to her age...when they made the movie. I'm sure he's in college by now.

"You mean the actor who pretended to be Anakin in the movie?"

"No, the real Anakin. You know, the one with the blue light saber," she said, justifying her position.

"Oh...you like the good Anakin!" I said, relieved.

(I gotta admit, the girl's got excellent taste. Hayden Chistensen is awfully cute. If you cross him with Josh Groban, you have my cousin Craig. And Ainsley adored Craig when she was a baby. Craig is also a good boy tempted by the dark side. A wonderful, loving human being who makes bad choices. So, there you go. Now I know why she loves Anakin. Duh!)

"Yeah, the one on the light side of the Force," she agreed.

Light side, dark side, good, evil. It makes no difference to me. She is FOUR and she craves the affection of a modern day James Dean. I wanted to smack her upside the head and say, "What da hell is wrong widch you?" But I didn't. Instead, I held her in my arms, kissed her little forehead, and said, "Sweetie, starting tomorrow, all Star Wars movies and video games are off limits."

"OK," she said with a yawn, and fell asleep almost immediately.

I am SO not gonna handle my children's puberty well.

Reaching for the Sky

My baby girl has started learning ballet. She has wanted to dance in toe shoes since she could talk, maybe longer. Just when she thought she would never get the chance, Santa brought her a leotard, tights, ballet slippers, and tap shoes for Christmas. With a tiny bit of my help, he enrolled her in classes at a lovely dance studio, where she will also learn tap.

We were the first ones to arrive for her first lesson. The class started back in September, so the other girls are ahead of her. She didn't let that slow her down too much. At first, she pretended to be shy and nervous about not knowing anyone. Once everyone had arrived, she was ready to meet everyone and take over the class. Her enthusiasm overflowed during the stretching games. Once they lined up to practice fourth position, she backed off just a little.

When the class was over, Ainsley lingered behind. Miss Lori, her teacher, walked over to her and gave her a big hug. "You did great!" she said. Ainsley's eyes welled with tears as she ran out of the studio and into my arms, where she started to cry.

"Oh, sweetie! What's wrong? You did so well?" I asked. She just nuzzled her face in my belly and sniffled. "Honey, I am SO PROUD of you! Was it a little scary being in there for the first time?" I asked.

She nodded her head a little.

"Was it fun, too?"

A slightly more pronounced nod followed. As I hugged her a little tighter, she whispered through her tiny sobs, "I want to stay and do it again."

My heart swelled in my chest and wrapped itself around her. This was pure joy, for both of us. Finally, she found something physical, something social, something beautifully expressive, something that is NOT related to Dora the Explorer or Star Wars!

And honestly, I could see it in her face that she loved it.

Chromosome 16

A study published in the New England Journal of Medicine links an abnormality in Chromosome 16 to autism. While the study found this evidence in a very small number of subjects, researches claim this finding is evidence that our genes are one of the causes of autism and could lead to the discovery of other genetic links as well.

The specific defect: a deletion of a section of Chromosome 16.

The evidence suggests that the defect occurs sometime after conception, although having family history of autism puts fetuses at higher risk of developing the defect. Doctors believe that approximately 90% of all cases of autism are inherited. Researches claim a pre-natal test for the deletion is years away.

Read the story referenced above in Business Week on line by clicking on the title of this post. The article contains a link to the actual study in the New England Journal of Medicine, if you want the nitty-gritty statistical version.

Does this study make me worried? Not a bit. It just confirms my long-held belief that my children are products of their family's DNA.

Do I think potentially autistic babies will be aborted? Probably not. If, as the study states, 90% of autism is genetically linked, then those who face raising children with the abnormality are very likely already dealing with it in themselves or other family members. Educating families on how to help kids on the autism spectrum will greatly alleviate many of the concerns parents have about their children who are different.

Autism is a quirk, not a death sentence. Let's keep it in perspective.