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.
Wednesday, September 12, 2007
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.
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.
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.
Saturday, January 20, 2007
The Top of the Roller Coaster Hill
"When your child is first born, it could all still be perfect." That's the line Steve Martin's character says in the movie, "Parenthood," and it's true. When our children are born, we have such lofty dreams and hopes for them. They'll be academics, movie stars, sports heroes and eventually they'll grow and start families of their own some day. But at the end of the day, I think most of us just want our children to be happy. At least those are the results of the informal poll taken amongst my parent friends.
My daughter came into this world on October 14, 2003, and the scenario wasn't perfect, but she sure was. Ten fingers and toes, pink chubby arms and legs and a scream that could knock down walls. Through the fog of the drugs and amidst the doctors putting me back together, I fell instantly in love. I couldn't take my eyes off of her as the nurses and my husband fussed over her and swaddled her up. She was born via c-section, I couldn't move my arms, so holding her was an impossibility. Instead, I drank her in with my eyes, fighting off exhaustion so I wouldn't miss a moment of her new life. Eventually, they took her out of the room, at which point I puked and fell asleep. Again, not perfect, but I'd do it all over again.
She grew quickly and it became obvious we had quite a firecracker on our hands. The scream she'd let out on her birthday was a good indicator of things to come. She was bright, silly and charming, but all that could change in a blink of an eye. The tantrums, it seemed, were just part and parcel of having a kid. No worries there. But around 18 months, her lack of true words started to concern us. Friends and family said it was nothing to worry about, but as a parent, sometimes you just 'know.' Our pediatrician confirmed that she should be saying more than she was at that point. Oh sure, she babbled on and on, but there were no 'real' words. Our doctor recommended we take her to a speech therapist for an evaluation, so we did. The results came back that her comprehension was at a 24 month old level, although her language was that of a 12 month old. With such advanced comprehension, they could not recommend speech therapy at the time.
We were partly relieved at this, because who wants to drag their kid to speech therapy every week? We continued to work with her, trying to engage her in more conversation and gradually, her vocabulary grew. In the meantime, I did some research on what could cause a speech delay. Besides hearing problem there was the 'a' word...autism. The first thing that comes to mind when most people hear that word is, 'Rain Man.' Well, certainly, my daughter was not Rain Man. She was very interested in other people, although she did just fine playing by herself as well. We had a routine she preferred we stick to, although, all the parenting books said that was what all kids craved. I couldn't deny she did fit with some symptoms listed on the Autism Society website, but how much of that was diagnosis and how much of it was I had a wild and wonderful 2 year old?
In October 2004, I picked up an extra day of work, so I could return to full-time status and get my benefits back and a much needed pay increase. A dear friend of mine agreed to watch my daughter for that one day a week. She had a son around my daughter's age and they were thick as thieves. That arrangement went great until midsummer. My girl started hitting my friend's son. Literally attacking him for no reason. I wouldn't have believed it until I saw it myself. She'd push him down and take toys from him, hit him and push him again. Time-outs didn't work, yelling didn't work, for me spanking is not an option, so we had to remove her from the situation. We eventually had to find a new babysitter, and we did. A former elementary school teacher with a home daycare and two children, including a son my daughter's age. It was the perfect situation, and at first everything went well. In a couple of months though, my daughter started hitting the babysitter's son with that same tenacity with which she'd gone after my friend's son.
I was horrified. How could my goofy, Spongebob loving baby girl be so aggressive and why was this happening? It wasn't just with other kids though, we could be anywhere and the slightest little thing could set my baby off in the most intense way. Meltdowns, we called them, for they weren't typical 'I didn't get my way temper tantrums.' Screaming, kicking, hitting, biting, you name it. She'd be inconsolable in the midst of one of her meltdowns, like she wasn't even connected to reality. Yelling didn't help, a firm grip didn't help...it's like she didn't even know we were there. I relayed all of this to our pediatrician. I wanted a reality check. Was it something we as parents were or were not doing? Generally she seemed happy. We were consistent with her, we disciplined her and praised her, played with her outside, limited her TV, but something wasn't quite right. Even compared to other kids her age, something seemed off. Our pediatrician recommended we see a developmental specialist.
A developmental specialist. My old fears about her speech delay filled my head. There would be three initial appointments. An interview, an observation of our daughter and a follow up where she explained her report. What would she say...our babysitter had mentioned something about Sensory Processing Disorder, which when I read about it, sounded an awful lot like what I'd read about autism, but again, didn't seem to fit my daughter 100%. We'd just go into the appointments and see what she said. Certainly, we were just blowing this out of proportion like our friends and family said. She was just a precocious, and demanding child. Now that she'd turned three, she'd probably chill out a bit. Right?
My daughter came into this world on October 14, 2003, and the scenario wasn't perfect, but she sure was. Ten fingers and toes, pink chubby arms and legs and a scream that could knock down walls. Through the fog of the drugs and amidst the doctors putting me back together, I fell instantly in love. I couldn't take my eyes off of her as the nurses and my husband fussed over her and swaddled her up. She was born via c-section, I couldn't move my arms, so holding her was an impossibility. Instead, I drank her in with my eyes, fighting off exhaustion so I wouldn't miss a moment of her new life. Eventually, they took her out of the room, at which point I puked and fell asleep. Again, not perfect, but I'd do it all over again.
She grew quickly and it became obvious we had quite a firecracker on our hands. The scream she'd let out on her birthday was a good indicator of things to come. She was bright, silly and charming, but all that could change in a blink of an eye. The tantrums, it seemed, were just part and parcel of having a kid. No worries there. But around 18 months, her lack of true words started to concern us. Friends and family said it was nothing to worry about, but as a parent, sometimes you just 'know.' Our pediatrician confirmed that she should be saying more than she was at that point. Oh sure, she babbled on and on, but there were no 'real' words. Our doctor recommended we take her to a speech therapist for an evaluation, so we did. The results came back that her comprehension was at a 24 month old level, although her language was that of a 12 month old. With such advanced comprehension, they could not recommend speech therapy at the time.
We were partly relieved at this, because who wants to drag their kid to speech therapy every week? We continued to work with her, trying to engage her in more conversation and gradually, her vocabulary grew. In the meantime, I did some research on what could cause a speech delay. Besides hearing problem there was the 'a' word...autism. The first thing that comes to mind when most people hear that word is, 'Rain Man.' Well, certainly, my daughter was not Rain Man. She was very interested in other people, although she did just fine playing by herself as well. We had a routine she preferred we stick to, although, all the parenting books said that was what all kids craved. I couldn't deny she did fit with some symptoms listed on the Autism Society website, but how much of that was diagnosis and how much of it was I had a wild and wonderful 2 year old?
In October 2004, I picked up an extra day of work, so I could return to full-time status and get my benefits back and a much needed pay increase. A dear friend of mine agreed to watch my daughter for that one day a week. She had a son around my daughter's age and they were thick as thieves. That arrangement went great until midsummer. My girl started hitting my friend's son. Literally attacking him for no reason. I wouldn't have believed it until I saw it myself. She'd push him down and take toys from him, hit him and push him again. Time-outs didn't work, yelling didn't work, for me spanking is not an option, so we had to remove her from the situation. We eventually had to find a new babysitter, and we did. A former elementary school teacher with a home daycare and two children, including a son my daughter's age. It was the perfect situation, and at first everything went well. In a couple of months though, my daughter started hitting the babysitter's son with that same tenacity with which she'd gone after my friend's son.
I was horrified. How could my goofy, Spongebob loving baby girl be so aggressive and why was this happening? It wasn't just with other kids though, we could be anywhere and the slightest little thing could set my baby off in the most intense way. Meltdowns, we called them, for they weren't typical 'I didn't get my way temper tantrums.' Screaming, kicking, hitting, biting, you name it. She'd be inconsolable in the midst of one of her meltdowns, like she wasn't even connected to reality. Yelling didn't help, a firm grip didn't help...it's like she didn't even know we were there. I relayed all of this to our pediatrician. I wanted a reality check. Was it something we as parents were or were not doing? Generally she seemed happy. We were consistent with her, we disciplined her and praised her, played with her outside, limited her TV, but something wasn't quite right. Even compared to other kids her age, something seemed off. Our pediatrician recommended we see a developmental specialist.
A developmental specialist. My old fears about her speech delay filled my head. There would be three initial appointments. An interview, an observation of our daughter and a follow up where she explained her report. What would she say...our babysitter had mentioned something about Sensory Processing Disorder, which when I read about it, sounded an awful lot like what I'd read about autism, but again, didn't seem to fit my daughter 100%. We'd just go into the appointments and see what she said. Certainly, we were just blowing this out of proportion like our friends and family said. She was just a precocious, and demanding child. Now that she'd turned three, she'd probably chill out a bit. Right?
Thursday, January 18, 2007
First Post...
Wow...I've finally entered into the world of blogging. Cool. This is easier than keeping a journal, because, well, I can do it while I'm at work too. :-)
I'm primarily doing this because my daughter was just got diagnosed with autism...mild autism, which is good, although I'm starting to see a more challenging picture of the future. But hopefully if there are others out there going through the same thing, we can share each other's experiences and learn and grow with our children.
So, a little about me. I'm a 30 year old middle manager in the tech industry by trade. I'm a writer in my dreams and my life is being a mom, especially now.
How's that for a cliffhanger? I'll have to cut this short now, but I'll be back.
Be Well.
I'm primarily doing this because my daughter was just got diagnosed with autism...mild autism, which is good, although I'm starting to see a more challenging picture of the future. But hopefully if there are others out there going through the same thing, we can share each other's experiences and learn and grow with our children.
So, a little about me. I'm a 30 year old middle manager in the tech industry by trade. I'm a writer in my dreams and my life is being a mom, especially now.
How's that for a cliffhanger? I'll have to cut this short now, but I'll be back.
Be Well.
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