Tuesday, April 15, 2008

Why do we wear shoes?

How would you answer?

Kaia had a speech evaluation last Thursday at the recommendation of our developmental pediatrician. Having failed to even speak to a breathing human at Children's Hospital, (not a knock on them, I know they are busy), I got an appt. with a local speech pathologist.

When we got in there, the Dr. explained what tests he'd be giving Kaia then directed me to a room with a two-way mirror so I could watch the tests as he administered them. Usually, people want videos of their children's birthdays or Christmas. I would have killed to have video taped her evaluation, it was quite entertaining.

At first, he opened up a flip book and asked her to identify shapes and colors and other stuff. She breezed through that, so he stopped and asked her some questions.

My favorite was this:

"Kaia, why do we wear shoes?"

She put her index finger to her lips and looked upward. "I know! So earwigs won't bite our feet!"

The doctor, who I'm sure has been doing this a while, has probably NEVER heard that response and it was all I could do to keep from falling on the floor and cracking up. "Um, ok, Kaia, I'll ask again. Why do we wear shoes?"

Again, finger goes to lips, a thoughtful "hmm" comes out of her and then, "Oh, I know. So centipedes won't bite our feet. And even scorpions."

So now you know why we wear shoes.

Wednesday, April 2, 2008

She's just quirky...

Quirky–adjective, quirk·i·er, quirk·i·est.
1. Having or full of quirks, idiosyncrasies, peculiar behavior.
2. The word Child Find would rather use to describe my daughter as opposed to 'Autistic' or 'having Autistic Tendencies.'

Quirky is one of those words that seems 'good' as in, "That romantic comedy movie was quirky and light-hearted." However, when the people at Child Find decided to describe my daughter this way instead of addressing any real issues, it's not such a 'good' word. Mostly because you can't get services for being 'quirky.'

They tested Kaia and when the results came back, I didn't understand the results. They tested her for academic readiness; shapes, colors, comprehension, that kind of thing. She scored twice as high as the average.

Never in my life would I have thought I'd be upset that my daughter had scored high on any kind of test, let alone twice as high as the average. But there I was, confused and feeling that cold reality that we would not get services settle in like a February snow.

"You're daughter is very bright, Mrs. Leavitt, you should be happy," quipped the too-perky administrator.

"I KNOW she's bright, I never said she wasn't. I'm not here because I think she has mental retardation."

A nano-second later her disposition did a 180 and she said. "Well, if you still think she has a 'problem' we can send somebody to observe her. You know, Mrs. Leavitt, we didn't see any kind of autistic behaviors, she's just quirky. Bright kids usually are."

"Are you a developmental pediatrician?" I asked.

"I beg your pardon?"

"Can you say that you've observed a good cross-section of autistic children? It's a 'spectrum' disorder you know, they're not all the same."

"Mrs. Leavitt, I'm well aware of that."

"Good. But the fact is that you are a school administrator, not a doctor and not really anybody who works directly with kids, so I find it odd that you feel as though you can diagnose my child." I tried to say this last part as gently as possible, but I failed.

"Good day, Mrs. Leavitt, we'll send somebody out to observe your daughter. You'll hear from us soon."

Thursday, February 14, 2008


When your child is diagnosed with a developmental disorder such as autism, in my county, you have the option to take them to an early intervention program, where they will decide whether or not you can get free services such as speech therapy or occupational therapy. When you're first told this, as a parent you think, "Finally!! All those taxes are going to pay off."

You could be right, or you could be wrong. The Child Find office at Independent Hill is in one of the many trailers that house the school board offices for Prince William County. I passed the place probably hundreds of times growing up and thought it was everything from an abandoned World War 2 bomb shelter to some kind of cult compound. If this grouping of dilapidated trailers *was* either of those two things, it'd be fine. But when you drive up and realize that this is the home of county services and the birthplace of public school decisions, it makes you nervous.

Yes, I'm judging a book by it's cover, but you have to realize that in my daydreams of the people who were going to help me and my daughter, it didn't look like this. I pictured more of a ivory tower/academia setting where they would smile and commit themselves to my daughter's cause, reassuring me that, "Yes, Mrs. Leavitt, everything will be fine! We are here for you, 100% satisfaction guaranteed or your money back." (And yes, I have a wildly overactive imagination.)

When my husband and I got seated in the waiting room, I quickly realized that we were in trouble. My daughter busied herself with some toys, my husband picked up a magazine and I observed. The mustard walls reflected the time when these trailers were put in place. The other parents in the waiting room looked like I felt inside. Nervous, scared. The kids were another story. One girl was in a wheelchair, staring at the ceiling, unmoving except for the slight rise and fall of her chest beneath her pink Dora the Explorer shirt. One boy was playing with a train smiling and content, but his almond shaped eyes and round face told the world that he had Down Syndrome. And there sat my daughter. Nothing visibly wrong with her, smiling, playing with some blocks, then flipping through the pages of a book. Relief and defeat collided in my chest. We were so lucky our daughter didn't have such severe issues, these kids needed services much more than we did and they would probably get them.

These old, water stained, rusting trailers whispered to me that there were only so many funds to go around.

Tuesday, February 12, 2008

5 Things About Me...

OK, so I was under the mistaken impression that nobody has ever read my blog. Now I know that at least one person has. Luckily, it's my good friend Nancy, and she already knows I'm a nut, so that's ok. :-)

However, now she is holding me accountable and has tagged me to write five things about myself. Hmmm...I'm happy to say that I knew most of the things Nancy posted in her blog, even though they were not things everybody would know. Nancy knows everything about me, so I'm not going to even attempt to come up with rare facts.

1. I used to own my own candle business. I still have all the equipment, so once I buy a house, Blue Turtle Botanicals *may* be up and running again one day.

2. I was a bathing suit model for one day for the swim shop I worked for when I was in college. Luckily, I believe all photo evidence was destroyed.

3. I have no sense of smell. (No jokes about how I have no taste.)

4. I have started a new hobby called "Geocaching." Found my first cache yesterday!! Now I'm hooked.

5. I used to be a wedding and private event DJ.

Now I have to tag 5 other bloggers...except I don't really know any. LOL I'll find some other ones and report back, pronto!

In the meantime, here's a picture of my girl atop one of the beautiful horses, Boo, that until recently lived at Nancy's farm:


Wednesday, September 12, 2007

Let the rumors begin...

Gossip is great, isn't it? Everybody loves it and everybody participates in it even when we say we don't like to or don't want to. Families are no different. In fact, families might be worse.

When I got to my niece's house, there was my mom, sitting on the couch while the kid's played and watched TV. My daughter got right in amongst them while I sat next to my mom. I was exhausted already and she hadn't even asked what the doctor said. Maybe she wouldn't - that would have been spectacular, but no.

"So, what'd the doctor say?"

"Well, she went over her notes, and what she saw and she said, well, you know she's been doing this along time and she came highly recommended and well, uh, she said my girl is bright and smart, and that she's uh, well, on the autism spectrum." Suddenly, U2's song, "Stuck in a Moment, that You Can't Get Out Of" came into my head. I wished I had a time machine so I could go back and change my answer to, "Oh, fine. Everything's great." It would have been a lie, but it would have spared me the next few months.

My mom stiffened in that way that she does when she wants to say something like, "What the hell?" but knows that she can't. I think she said something like, "Really?"

"Yes, she's highly functioning, but she's still on the spectrum."

"I see."

I was waiting for her to bring up my other nephew who was autistic - start drawing comparisons, but she didn't. Instead, she grabbed my daughter and hugged her tight and said, "But she's just an angel girl." That's what my mom says when she wants to avoid whatever topic is being discussed.

"I know," I said, and went to the bathroom. I didn't actually have to pee, I just had to get out of there for a second. After a few deep breaths and some water on the face, I went back into the living room. My mom was on her cell phone and the part of the conversation I caught was, "...well of course the doctor met her, she did an observation of her. I'm guessing that's how she came to that conclusion. I know it's not right, but that's what she said. Ok, I have to go. Love you. Bye."

I pretended not to hear it, but I asked if it was dad on the phone and she confirmed that it was. I wanted to leave right that instant. Not just the living room or my niece's house, but the state, or better yet, the country.

I told my daughter to get on her shoes and gathered up my purse. "You know, Mom. All this means is that I'm going to do my best to get her whatever she needs to survive and thrive in this life. The good news is, I was already planning to do that before my chat with the doctor."

She didn't have an answer and I didn't have anything else to say, so I left with my daughter and we went for ice cream. Why not, after all, the world hadn't stopped.

Thursday, August 30, 2007

The World Didn't Stop

"How do you feel about this, Mrs. Leavitt?"

It was a fair question, since the tears streaming down my face could have meant anything. She handed me a tissue, and smiled at my daughter - with the practiced skill of somebody who has lived this scenario countless times. My girl smiled back, oblivious to my tears and the fact that our lives had just changed forever. She went back to playing with the Fisher Price Sesame Street Clubhouse. That had been my favorite toy as a child too. I smiled at my girl and touched her soft blond hair.

"Mrs. Leavitt?"

"I think...I think I'm relieved." I knew that must have sounded strange, but it was an honest answer. At least there was an explanation for some of my daughter's quirky behavior.

"I hear that a lot," she said.

The doctor gave me all sorts of information, where I could go to get further assessments, a whole list of books I could read, websites, county resources, a virtual care package of what to do and who to talk to when your daughter is autistic. When we were still in the doctor's office, I felt safe, like I could handle this.

It felt like when I was in the hospital when my daughter was first born. The nurses came in, changed diapers, helped feed the baby. They were so calm, everything seemed so easy, until I got home with this baby and realized my husband and I had to do all of this ourselves.

It wasn't until I stood in the street with my daughter - the same beautiful tree lined street we'd walked up not an hour ago - that I realized I wasn't ready for this. I had no idea how to handle it. My daughter let go of my hand and picked up some more leaves, delighting in the different colors and textures. I saw dead leaves. Ugly, rotting, dead leaves. How had the picture perfect street change into such a cold and unfeeling scene so quickly?

I thought to call my husband, but I didn't. I don't know why. I just picked up my girl and carried her to the car. She smiled at me and pointed to more leaves and trees, still blissfully ignorant. I was happy for her. When we reached the main road, cars zoomed by, just like before, people went about their day, and the world hadn't stopped for my daughter nor I. When events like this happen, it feels like the world should stop, but it never does. The earth keeps spinning and we keep going, it's the only choice.

My mom called when we were on our way home to say she was watching my nieces kids and why don't we stop by. I knew that she knew about the doctor appointment and I knew she'd want to know what the doctor said. If the earth would have opened up and swallowed the car whole, I would have been more than ok with it. You see, I love my mom, but she's of an age where any kind of 'disability' is looked upon with shame, not compassion. She adored my girl, but in an instant, it could all go south. In the end, it didn't matter what my mom thought, I loved my daughter, now more than ever, and that would never change, but I didn't want to have to deal with having to defend my daughter against her own family - I was sure I'd have to fight for her plenty, autism or not, that's what parents do, but it's different when the enemy is related to you.

Been a while...

...but life is getting to be 'normal' - whatever that is. :-)

The appointments with the developmental pediatrician were interesting. The first appointment was an interview with my husband and I. She asked us countless questions, some of which made sense, some of which didn't, but we answered them all.

How's her attention span? What kinds of words does she say? Does she have 'pretend' play? What's her favorite toy? Does she sleep well? Does she ever have a conversation with you? How do other kids respond to her?

We were there for about an hour and a half. When we walked back down the row of town houses, I felt like I'd just done an hour and a half of Tae-Bo. I'd asked the doctor about Sensory Processing Disorder, but she dismissed it as something people say when they don't want to say 'Autism.' I didn't really know what to think. The doctor did harp on her attention span a great deal. I wagered to myself that we'd be told that Kaia had Attention Deficit Disorder and I fantasized about that moment and what I would say.

"She's two. Of course she has ADD!" At that point I'd stomp out of the room with my quirky daughter and seek a second opinion.

The next appointment was an observation of my daughter. She was told to play with certain toys and perform certain tasks like kicking a ball, and hopping down from a stair step. The doctor was amazed at how well she knew certain things like her colors and letters, also how adept she was at doing puzzles, but still she focused on my daughter's short attention span. The chances of winning my bet with myself looked better and better.

The third appointment had to be rescheduled due to a work conflict on my part. My husband couldn't make it, and I couldn't get a babysitter, so I had to take my girl with me. At this point, I still expected the ADD diagnosis. I *hoped* for, "No, Mrs. Leavitt, everything is fine! It's good that you are so concerned about her well being, but she's fine." As it turns out, I got neither.

I parked the car and walked with my daughter to the doctor's home office. It was fall and the leaves were turning. Red, gold, orange - stunning - the quiet neighborhood like one you'd see in a movie. My daughter picked up a maple leaf and twirled the stem in her pudgy fingers.

"Maybe when we are done here, we can go to the park." I said. She looked up at me and smiled.

When we got into the doctor's office, I apologized for having my girl with me, but the doctor just smiled and pulled out some toys for her to play with. We reviewed her report, and I nodded and smiled as she outlined what she saw and asked if I agreed. Nothing she said was exaggerated or wrong. This process seemed to go on for a while and I started to feel like she was building me up for something. She complimented how well my daughter did this or that, how cute and social she was. Each weakness was couched in at least two strengths, which made me feel proud, but suspicious.

Maybe it's just me, I thought. She's about to tell me my girl is fine and I'm just an over-worried mother. After all, she is my first and so far, only. I've never done this before. Please, please tell me that everything is ok.

The tears were already welling up when she told me that my daughter, my ten fingers, ten toes, cherubic daughter was on the autism spectrum.