It's Asperger's. . .Again

My baby girl has it. That's really all I can say right now. It isn't any easier the second time your hear it. I need to chill and regroup, but I'll be back soon, so don't go too far.

I Said What???

I must be a little tired today. My tongue and my brain are not on speaking terms.

A few days ago, in a frenzy of fury brought on by children not listening, I told Ian and Ainsley I was tired of seeing them pick their noses and use their mouths as trash cans. Serious consequences were about to follow.

"Ian, if I see you do it again, you owe me a dollar!" I bellowed. "Ainsley, if you do it again, you lose a half hour of t.v." I can hit 'em where it hurts, baby! And they knew I was serious, too. The good part is, I haven't seen either one of them engaged in "the act" since then.

As this afternoon crept into evening and homework had yet to be started, I quickly unloaded folders, books, and lunch boxes from backpack and school bag. Then Ian ran to the bathroom as I was about to give instructions on where to start his homework. As soon as he was finished, Ainsley went running in, screaming, "I have to go potty! Mommy, you have to help me!" All she really needed was for me to watch her go in and say, "Good job!" Glancing in the laundry room on my way back to the kitchen, I noticed the dog's food bowls were empty.

"I need 2 children to fill the booger holes!" I shouted.

Wait a minute. Did I just say that?

"Mom, you said we weren't supposed to eat boogers any more," Ian said to me indignantly.

"Yes, I know dear. What I meant was, you need to fill the sugar bowl." That still didn't sound right.

"I thought we couldn't have sugar either," Ian retorted.

[loud sigh, rubbing forehead] "I mean, your dog is hungry. Please fill Sugar's bowls." Finally!

Ian just looked at me like I was nuts.

Bittersweet September

September is one of my favorite months. Few things can match a New England fall, except perhaps the autumn months in the Rocky Mountains, and I have been lucky to experience both. Cooler weather, bright warm colors, apples ripe for picking, a smell of crisp cinnamon lingering in the air. All of these sites and sensations signal the year's maturity.

September in Texas is hotter than most places, but we usually begin to feel relief in the evenings, making it a great time for riding bikes or playing in the back yard when the sun starts to set. Even here in the Lone Star State I can take a deep breath of the changing air and feel a calmness that is not possible at any other time.

We took the kids on a bike ride last night that led us directly to Ian's favorite pizza place. The kids ordered enormous slices of cheese pizza, Steve chose a deep dish Sicilian, and I opted for a salad. We dined on the cool patio where the breeze reminded us that we were still in the city. It had the occasional scent of warm tire tread mixed in with cut grass and car exhaust. Not exactly the spicy aroma we had in Massachusetts.

The kids looked really tired as they finished their dinner. We put on our helmets and headed back up the hill toward our house, hoping the cars would see us through the dusk. Both Ian and Ainsley gave it all they had and seemed to enjoy the hard work. It was a good sweat, one that is a reward for giving muscles a challenge. When we arrived home, Ian was grinning, pleased with himself and reveling in the new experience. Ainsley talked and sang to herself.

It was in that moment I realized how tired I felt. It wasn't from pedaling a mile or so uphill. Rather, it was mental exhaustion for hearing Ainsley chatter non-stop for the last hour and a half. Literally. . .she started talking when we left the house and had not stopped. Very little of her conversation during that time was directed at the rest of the family. It was all inside her head and spilling out. She rarely invited the rest of us to the party, even when we asked to join.

I often wonder what is going on inside my children's heads that makes them so distracted. Is it amplified sounds from their environment? Are there voices that only exist between their ears? Is it music? Are there bells ringing? Are they working out complex math problems? Remembering stories they have read? Do they block out everything going on around them so they can focus on their own thoughts? As a parent, it is like living in Horton Hears a Who, searching through the clover patch trying to find that single, tiny speck with all the answers.


I imagine for Ainsley it is much like the infinite colors in the changing leaves, bombarding her thoughts and senses with too much information to be able to see the beauty of the entire experience. Will medication help her see the details as well as the whole?

On Tuesday, when Ainsley sees the neurologist, we may be forced to deal with even more questions, many of which will have no answers. Without knowing if she has other autism related disorders, I feel that dusk is settling into a frosty night. Without a label, the complications are mounting and we don't know how to deal with them. Only one thing is certain: changes are coming for our family. It's time to take a very slow, deep breath.

The Ride of Our Lives

We bought a tug-a-bug. This is my idea of subtly introducing two-wheeled bicycling to my children. Ian is terrified of riding without training wheels. Most boys his age have been riding independently for a while. He would like to ride his bike to school - just once - and doing so with training wheels is going to open him up to ridicule. Ainsley, of course, is afraid of anything Ian is hesitant to try. It's a package deal.

We hooked the tug-a-bug to Steve's bike, and Ainsley and I went for a spin. She took to it immediately. "Wooooo-hoooooo!" she yelled as we glided through the 'hood. Her main concern was stopping at regular intervals so she could take a sip from her water bottle, for which she had personally chosen a shiny silver bottle mount. After an hour of riding in the noontime sun, we headed home. Words fell from her lips the entire ride. I ignored many of them, but the ones that made me laugh the most were, "Mom, this has been the ride of my life!"

At 5:00 it was Ian's turn. Homework was finished and Ritalin was kicking in - it's a great time of day for a bike ride. He was excited and hesitant, but he mounted the seat and said, "Let's ride!" He moaned nervously as we rounded our first corner.

"Just hold onto the handlebars, Ian, and you'll do fine. Pedal! Pedal! We're going up a hill. I need your help!" I shouted. I could hear his grunts of effort. He wasn't going to let me down. We took the next left turn, and then another.

"Ian, you know what? You're riding without training wheels! Isn't that cool?"

He thought for a moment. "Yeah, that's really cool! This is the ride of my life!"

Huh? Deja vous.

"Mine, too, sweetie."

Epiphany

This past weekend my children spent their first nights away from home without us. They were welcomed into the arms of their grandparents and had a wonderful time. I was worried they would get homesick and I would be driving 200 miles in the middle of the night to be with them. That did not happen.

Steve and I did things we cannot do with the kids. We went shopping for several hours and looked at appliances. Now that's a hot date! [read with sarcastic tone] Afterward, we took a nap. Steve was on the love seat, Sugar and I were on the couch, and Soundscapes music was playing on the stereo (if you are unfamiliar, that is what I refer to as "spa music"). That really was fabulous. After about an hour of having the dog sleep on my arm, we were recharged and headed back out to enjoy dinner at a Thai restaurant and a movie - The Bourne Ultimatum. I highly recommend both (the dinner and movie, not the numb arm part).

Even though I missed the kids, the break gave me time to regroup. After having the house torn apart for a week of painting, the silence allowed me the chance to approach Ainsley's upcoming appointment with a pediatric neurologist as an opportunity to learn how to help her. Long, calm, deep breaths cleared my mind, allowing me to realize it's not a death sentence, it's a diagnosis. It doesn't define her, it merely describes a part of her. We can handle this, no matter what the label says.

It's funny how it only took being apart for 48 hours for me to be able to look at Ian and Ainsley as if I were on the outside looking in. Yesterday, when Steve and I picked them up, I observed the same behavior I see at home, but this time it was so much clearer to me how much alike they are and how out of sync their bodies and minds seem to be at times. I have felt that way before - heard my mouth saying something, while my brain thought something else and my body was doing something completely unrelated to the other two. It is difficult to put it all together later because there is no connection. It is three distinct events all happening simultaneously in the same body. No wonder Ian can't remember what happens at school or what he did thirty seconds ago. There is just too much going on for it all to register.

In a way, one could say Ainsley is fortunate. We have learned so much with/thanks to Ian. She will benefit greatly from those lessons. Hopefully, this will go easier for her, if as we suspect, she has more than just ADHD. We will know soon enough.

Introducing My Children to God

I became ordained as a minister last week. It wasn't because I am a religious person; I am not. I don't believe in going to church every Sunday to seek guidance and salvation. Those things are found within. The ability to know what is right and to do the right thing is not reserved for an elite group of people who worship in a particular building. Each of us has the ability to forgive our own transgressions and move on. Over the next decade or two, I hope to teach my children to find spirituality within themselves and not rely on others to tell them what to believe. God is what each of us need Him to be, and we create an image and belief system that works for us.

My first reason for taking on the title of Reverend was so that I could perform a marriage ceremony for some very dear friends who I hope will share a lifetime of happiness together. It was my examination of their relationship that enabled me to see I have been neglecting my duty to educate my children about God. For nearly eight years I have wondered when Ian would be ready to grasp a concept that is philosophical, not concrete. He knows about God, but does he really get God?

Ainsley is still in the elementary stages. She knows that at school, they pray before they eat. Now, when she plays Hungry Hungry Hippos, she makes the hippos pray before the game starts. I like that she understands we should be thankful for what we receive. Unfortunately, she doesn't always apply that gratitude to our own dinner table. I have heard her exclaim, "yuck!" while shoving her plate across the table when she doesn't think she wants to eat what has been placed before her. We'll keep working on the basics with her.

But right now I want Ian to understand that all religious ideas are debatable. No one on this planet has answers that are any truer than what he believes. If there is faith within him that an Almighty Creator made the rules by which he lives, then I expect him to use his common sense and apply those rules appropriately. Therein lies the difficulty for an Aspie: applying ideas that have little or no scientific basis and are far from black and white. And common sense, that's a tough one too. Ian claims not to have any. The impulsive and compulsive parts of his brain squashed out common sense very early in his life. My job is to guide him in resurrecting it.

While most children his age are learning how to apply the doctrine of their churches, Ian is still learning the basic concepts. I tried to explain "faith". He kept insisting that it meant "reading other people's minds" and became stuck on that idea. The discussion ended as quickly as it started. Maybe he isn't ready.

We are having most of the first floor of our house painted this week. Ian picked up a random aerosol can and sprayed it all over a window. It was a foam caulk that, fortunately, is water soluble and takes a long time to dry. Since he couldn't explain why he thought that was a good idea and he kept blaming it on everyone else around him, I concluded that he is probably right about his common sense. It done got up an' went! If he can't grasp the simple rule that you don't attempt to use things about which you know nothing, teaching him about God could be dangerous. I think we'll just keep working on simpler ideas for now. The paint fumes have made me light-headed, and that could last a while.

Farewell Luciano

I am in mourning. The man whose voice introduced me to opera has died. Luciano Pavarotti taught me to love Verdi and Puccini when I was too young to pronounce their names or the titles of their famous works. Every Saturday afternoon from the time I was 5 years old until I went away to college, my family would listen to opera on public radio. It's what Italian families do. We listen to opera, make ravioli, and talk in loud voices. I used to think the yelling was because of the hot-headed nature of our breed, but it was really because no one was willing to turn down the music. Now we're all hearing impaired.

My grandfather would sit in our kitchen with my parents, sipping red wine and playing cards. Occasionally, he would dance his way to the stove to take his turn at stirring the red sauce, singing as he went. I would peak around the corner to watch him. When he spied me I would run to him and we would dance in circles in front of the sink while Grandpa and Luciano sang La Boheme to me.

A few years later, when I was about to turn 8, the opera halted for a while. Grandpa had died, and it was just too difficult to hear the music that flowed in his veins. Saturdays were the worst. He wasn't there to stir the sauce, and he wasn't there to sing the tragic stories in the language of his parents. Luciano's partner had gone on without him. So the music stopped.

Then after several months, on a Saturday afternoon, my mother turned on the radio. La Boheme was playing. She sat down on the couch and listened for a few minutes and then began to weep. My dad, my sister and I gathered around her, and we all cried. It was as cleansing as it was sad. We needed Luciano to help us heal.

In high school my friends thought it was odd to listen to such things. My best friend tolerated it when she would come over because she thought my father looked suspiciously like Pavarotti. I had always thought so too.
Dad would say the resemblance ended with the beard, but that never stopped him from belting out a few bars during one of the great arias. I have always pretended that Dad's singing is terrible, but I adore it. He is completely comfortable playing Rodolfo for us - or Tevye from Fiddler on the Roof. "If I Were a Rich Man" has always been one of his favorites, and he often used his Topol-esque qualities to remind us that he is "the father!" when the three women of our family would trample his authority. Again, it was probably the beard.


I have been fortunate to be married to a man who, although not Italian, has been willing to tolerate my family's traditions, including listening to opera when he would rather be wearing headphones cranked with The Beastie Boys. When we were newlyweds, he was in graduate school, and we were broke, Steve's grandmother gave us some money for Christmas with the stipulation that it could not be used to pay bills. So, we bought tickets to hear Pavarotti in concert. To this day, I have never heard anything as beautiful as his voice in person. His musical ability was nothing short of a miracle, and I heard it with my own ears. A couple of years after that, Steve and I had tickets to the last 3 Tenors concert, which was canceled. I knew then that would be my last chance to hear them together, but at least I got to hear the best one when he was at his peak.

Ian's love of music has had me hopeful that he would learn to enjoy opera as I have, to be inspired by the beauty that comes from a well-trained, highly skilled voice. Ian can carry a tune quite well for a kid. Unfortunately, he find the sopranos somewhat grating on his sensory system. I can't blame him, really. But the great tenors - Caruso, Pavarotti, Carreras, Domingo - the power they bring to a stage simply by breathing air is what makes children dream they can do great things. I want Ian to believe life is that easy so he will aspire to greatness.

Ian will turn 8 in a few weeks. Even though he will never attend a Pavarotti concert or dance with his great-grandfather in the kitchen, he will still be able to sit on the couch at my parents' house and listen to opera with them. Maybe he will learn to love it like I do, or at least appreciate the physics of making music with the vocal chords. He already loves my mother's red sauce and likes to stir. And he thinks my father is the most brilliant man alive. What's more inspiring than that?

Evaluating a Child for ADHD

It has been a long time coming, but the signs are too strong to put it off any longer. We're having Ainsley evaluated for ADHD. Our pediatrician had me complete the Vanderbilt ADHD Diagnostic Scale. I know it is widely accepted because three different clinicians, all in different cities, have used this scale to evaluate Ian. I trust its accuracy.

I went through the questionnaire three times. The first time, I answered each question with instinct, putting down the first answer that came to my head. Then I went back through each question and thought about the answers for quite some time, trying to come up with as many examples as I could for the behavior in question and asking myself if that was the truest possible picture of my daughter. Then Steve and I went through the answers together, concluding that the responses were accurate. And then we cried.

We have always known that the possibility of Ainsley being somewhere on the autism spectrum was not only possible but highly likely. It has been easier to keep hoping she has an exuberant personality than face the reality that she is adept at masking hyperactivity as a joyful outlook on life. It has become clearer over the last few months that she is plagued by tremendous anxiety and behaviors she cannot control. She needs help.



Over the next couple of weeks we will be seeking no less than two additional opinions about her condition. I am not eager to medicate her at this time, because she will not be entering kindergarten until next year. If I can provide her with appropriate play therapy to introduce her to coping skills, then maybe we can delay medication until it is necessary to get her though the long school day. With Ian, there really was no other option but to treat his ADHD with medication early. There were so many co-morbidities that could not be addressed with ADHD in the way. Ainsley does not have those factors to contend with, thank goodness.

Friends have been asking lately how I manage to deal with all of this. I suppose part of me stays numb all the time - the part that has to make difficult decisions and keep it together so our life can move along as smoothly as possible. The blinders are up all the time, sheltering that part of my brain from any emotion that can interfere with rational thought processes.

Another part of me feels just enough stress to keep me constantly alert to changes in the kids' behavior. It's that part of my gut that can be fooled into believing things are o.k. by just the right amount of chocolate or a second glass of wine. I have to worry a little so I'll watch Ian and Ainsley closely. Tiny changes are often cause for celebration. Every little thing that causes us to rejoice keeps us optimistic about the future. Some alterations are cause for concern; I have to be on guard for those as well, but not so much that I dwell on what might be rather than what is.

The part of me that aches terribly right now is my heart, and I don't think it is because the Crestor I take each morning is ineffective. Another dream has died for me - the dream I have had for so long that at least one of my children would experience a normal life. A life without the complications of autism. A life without medication. A life without therapy. My daughter will have insecurities that her peers do not have. She will face additional physical and social challenges they do not face. Her reality will be skewed by neurological abnormality. Yet, to her credit, the strength of her personality will be the force that keeps her moving forward. She will have an older brother who understands her better than anyone else. And she will have parents who love her so deeply they will fight for whatever it takes to make her whole.

I don't know how I do this every day. Right now, I am not doing it very well, but this too shall pass. The hardest part for me has always been getting through the initial acceptance of a diagnosis. I'll be pissed as hell for a while. That's just the way I am. But eventually, Ainsley's unending joy and beautiful smile are going to heal my soul so that I can help her. It's the symbiosis that makes our family work. I guess that's the answer to the question.