Pieces That Fit: A Mothers Journey Through Her Son's Puzzling Diagnosis of Asperger'S Syndrome
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Pieces That Fit: A Mothers Journey Through Her Son's Puzzling Diagnosis of Asperger'S Syndrome
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Overview
Product Details
| ISBN-13: | 9781496970084 |
|---|---|
| Publisher: | AuthorHouse |
| Publication date: | 02/13/2015 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 88 |
| File size: | 4 MB |
About the Author
Read an Excerpt
Pieces That Fit
A Mother's Journey Through Her Son's Puzzling Diagnosis of Asperger's Syndrome
By Karen MacNeill
AuthorHouse
Copyright © 2015 Karen MacNeillAll rights reserved.
ISBN: 978-1-4969-7009-1
CHAPTER 1
Where we began: Jim, Karen, and Chandler
When Jim and I met, it was love at first sight. So corny. So clichéd. So unlikely, but true. I was twenty-one years old, a senior at the University of Maine at Farmington majoring in education. That October night when we met at Capt'n Nick's Restaurant and Nightclub in Ogunquit, Maine, I was home for the weekend to see a dentist about my wisdom teeth. They were impacted, and I would need to have them removed two weeks later. My best friend, Lori, was a cocktail waitress at Capt'n Nick's, so to cheer me up she suggested I come to Nick's that night for Nickel Draft Night. I wasn't much of a "bar fly," having just turned twenty-one, but I thought, I'm having a crappy day with this impending tooth surgery coming up, so why not?
Jim was twenty-four. He was a bartender. I'm not going to sugarcoat it; he was hot stuff. I asked Lori, "Who is that?"
She laughed and said, "That's Jim, the bartender."
"I'd like to meet him," I said. Lori introduced us. Unbeknownst to me, Jim had asked Lori about me just minutes before I had asked about him. Jim and I had an instant connection that rivaled any other. He nicknamed me KK that very night, and it stuck. (My license plate has said KKMAC for the past eighteen years.) It was October 5, 1990. We began dating exclusively and then moved into a little place just a short walk from the ocean in Wells eight months later. We were married in December 1992.
Jim is from State College, Pennsylvania. His father was at one time the aquatics director at Pennsylvania State University. His mom was a stay- at-home mom. His parents had been unable to conceive children of their own, so they adopted three boys. Jim's two older brothers were adopted from foster care at the ages of two and three. Jim was adopted when he was five days old through private channels. The only thing we knew for sure about Jim's medical history was nothing. We knew that his birth mother was of Pennsylvania Dutch descent and was very young—sixteen years old when she became pregnant with Jim. His biological father's information is sketchy. We know that he was married and a much older man and that he may have been of Italian descent and that he owned and operated a local hair salon in the small town where the young girl lived. What I learned about Jim as a person was far more telling. Jim probably has ADD (Attention Deficit Disorder), although he has never been formally diagnosed. He's calmest in a crisis and is an amazingly strong leader, which makes his work as a general manager of a local restaurant fit him so well. He works hard, smart, and a lot. He is able to multitask and juggle many different duties efficiently. His attention span is short, but he is absolutely present when you speak to him. He's incredibly loving and generous, and he's a true giver. Selfless. But I have medical history on my side. Let's break it down:
KAREN'S MEDICAL HISTORY
JIM'S MEDICAL HISTORY
• Maternal grandmother—deceased; ALS
UNKNOWN
• Maternal grandfather—deceased; dementia
• Paternal grandmother—deceased; cancer
• Paternal grandfather—deceased; cancer
• Mother—anxiety, depression, scoliosis
• Father—prostate cancer, prostate removed,
ffi high blood pressure, anxiety
• Sister Kathleen—deceased; spina bifida
• Sister Suellen—anxiety and depression
Clearly there is evidence of anxiety and depression in my family history. One might even say it runs rampant! Jim knew this and knew my medical history. He knew my family very well. He knew that I, too, am an anxious person. A little skittish even. He didn't concern himself with any of it. Jim is a relaxed and mellow man and doesn't get flustered easily. We used to joke that he has "no pulse."
Like any other couple, we talked about having children. We talked about little girl names and little boy names and Little League and prom dates and colleges. When we were discussing having children, I don't recall any conversations that started with, "What if our child has special needs?" I don't remember being nervous about having a baby. We discussed the fact that Jim was adopted and knew nothing of his medical history, but Jim was adamant that we not delve into his past and that his parents were his parents. Period. So that subject was closed. We were young and full of hope, so we talked about positive and hopeful things. Superficial things like nursery colors, which was the best stroller to buy, and cloth versus disposable diapers.
I am originally from a small town in Maine. The same town my parents married and settled in. My father made a career in education. He spent thirty-eight years teaching, earning degrees, acting as an assistant principal and finally a principal. My mom had various jobs such as secretarial work and teaching exercise to senior citizens. Both of my parents are anxious, fastidious, particular people. They are very routine-oriented and keep an immaculately clean house. My mom suffers from depression and has been in pain most of her life with scoliosis.
My parents had a healthy baby in 1963—my sister Suellen. Then in 1966 they had a second baby, Kathleen. She was born with spina bifida. My mom didn't have an ultrasound when she was pregnant with any of us girls, so this birth defect was a complete shock to my parents. Kathleen would die a year later.
I don't know much about this period in my parents' lives. My sister Suellen was four years old when Kathleen died, but she recalls a "dark period" when she spent a lot of time with our grandmother, who lived next door. I know that Kathleen was a beautiful baby and that my mother remarked to my aunt one morning while still in the hospital, "Isn't she beautiful? You'd never know by looking at her, would you?" I heard this from my aunt, so I assume my mom meant that the birth defect was undetectable while Kathleen was swaddled in her pink blanket. I often try to imagine what my mother must have felt at that moment. A mother of a special needs child myself, I try to identify with her pain. It must have been terrifying for her. She must have felt so out of control. Unbelievably, after that horrendous experience, they decided to have another baby in 1969—me. I was born healthy.
I've always been an anxious person. I used to think I was hyper, but as I've grown older, I've realized that the surges I feel coursing through me at times are anxiety and nervousness. I would have many experiences with anxiety through the years as I began to raise Chandler, and I would address it through talk therapy and medication much later in my life. As I became more self-aware and more in tune with my body and my anxiety symptoms, I was also better able to manage those surges of anxiety on my own.
I was concerned that Kathleen's spine malfunction might have crept into my gene pool, and I was just as concerned that my mom's own spinal issues might have as well. I wasn't necessarily concerned with the anxiety and depression piece, nor was I too worried about Jim's ADD (especially since it wasn't a formal diagnosis—just observations on both of our part.) Jim's mom once told me that Jim was always on the go as a child. That his engine was always revving. She advocated for Jim not to have to go to school by bus at the early age of eight. She thought that if he ran to school, he would get his energy out and be ready to attend once he got to school. Funny, I was concerned about the spinal issues but not about anxiety and ADD, and these were precisely the things I should have been worried about. So even though Jim and I never discussed "birth defects" and special needs and the possibility of our children having disabilities, it was obviously on my mind.
When I was four months pregnant with Chandler, I remember having some sort of anxiety/panic attack while lying on the table waiting for the ultrasound to begin. The sonographer, Sandy, asked, "Would you like to videotape the ultrasound?" and I just panicked. What if she found abnormalities or the spine wasn't forming properly? I didn't want a videotape of that! I began to cry. Like really sob. Sandy and Jim consoled me. Through my tears I explained that I was just so nervous that something would be wrong. Jim simply said, "Let's just see and then we'll deal with it."
So we proceeded with the ultrasound and what we saw was the most beautiful sight. A boy. A penis, even! No abnormalities. None that could be detected, anyway. Nothing other than a healthy fetus.
This is my story. A story about my son Chandler, who has Asperger's syndrome. A story of tough times for a family that never even entertained the notion of having a child with a brain disorder. A journey through therapies and IEP (Individualized Education Program) meetings and psychiatrists and tests and medications and anxiety. But also, a story full of hope with a message that things get better. That these little children with this disorder grow and change and adapt.
Jameson "Chandler" MacNeill was born in a long, arduous process in the wee hours of the morning on September 16, 1996. I had a normal, healthy pregnancy and opted for natural childbirth. My son was named for Jim, whose name is James Charles MacNeill. We liked that "Jameson" was a way of saying "James' son." Jim was named for his mom's brother, so we hoped this would carry on some sort of family tradition. But I really wanted to call him Chandler. So Jameson is his first name, but he goes by Chandler. I remember making that final push and the doctor saying, "Come get your baby ..." And so I scooped him up and onto my chest and just breathed a sigh of relief. All ten fingers, all ten toes, gorgeous face just like his dad's. I was tired. Sore. Wrung out. Happy to be done with the birth. Happy that Chandler was healthy. He was crying and hungry, and he was big: nine pounds six ounces. The initial tests performed by the doctor after the birth indicated that Chandler was a normal baby.
Jim slept through that day in the armchair next to my hospital bed with Chandler swaddled safe and snug in his arms, while I caught some sound sleep in the bed alone. Jim was the proudest father I had ever seen. Photographing Chandler from every angle, calling friends and family, kissing me, teary-eyed, and thanking me for his son. It was a beautiful time.
Jim went right back to work after Chandler arrived, but I didn't. Fortunately I had the luxury of some time off with my job as a second-grade teacher. I took twelve weeks off from teaching to get to know Chandler. To become a professional breast feeder. To wake up every morning and maybe not go anywhere that day. Maybe just lounge on the bed breast-feeding and stare at Chandler, who stared at me. I remember those three months I spent at home with Chandler to be some of the most blissful and beautiful times of my life. He was a good sleeper and a good eater during that time. Not fussy, very content. I just savored every moment.
When I finally did go back to work, Jim stayed home with Chandler for a short time. Without a doubt, leaving Chandler and going back to teach was one of the most difficult things I have ever done. Jim was between jobs, so he played Mr. Mom for a bit. We decided we would enroll Chan in the day care down the street from our house when Jim went back to work. I didn't like that idea. I secretly hoped Jim could somehow stay home with Chandler, and we would never have to enroll him in any day care. But Jim is a worker, a hard worker, and, like most families today, we couldn't afford it. We had to have two incomes to live. Not to mention that I was providing health and dental insurance for us all through my job.
When Chan was about three months old, Jim took him down to his workshop in the basement. He snuggled him into his swing and started up the band saw to work on his latest project. When I came home from school that afternoon, Jim was sitting in a chair in the living room. His hair was greasy, and his sweatshirt had spit up on it. He hadn't shaved. He had Chandler swaddled in his arms and was feeding him a bottle of breast milk. "What's wrong?" I asked. "You don't look good." Jim became very emotional. I remember taking Chandler from him and continuing the feeding while listening intently to him. "I took Chandler downstairs to finish the legs on that table," Jim began. "When I started the band saw, Chandler absolutely freaked. He just started screaming. His mouth was so shaky, Karen, and his eyes—they were just wide with horror." Jim spent the rest of the day after that sitting in the chair holding Chandler. Never showered. Never ate. Just held Chandler. For many years Jim thought he made Chandler autistic by running that band saw.
He says, "I know it sounds stupid, but I just think that had something to do with it."
I disagree. Jim didn't cause Chandler to have autism by starting up a band saw in his presence. Most likely scared the crap out of him, but make him autistic? No. I would adamantly but lovingly tell him this when it came up in conversation over the years.
I have been asked my opinion by parents of my students, teachers, family, and friends many times over the years about the cause of autism. I am always happy to share my opinion, as I have done extensive reading, experiencing, and living on this topic. I read the latest research, I talk to parents and medical professionals—and most especially, teachers. I am not an expert, and I don't know everything, but I do believe it is a genetic thing. I believe it happens in utero and that the parents' DNA dictates the outcome. In addition, I know this: my husband Jim was adopted at the age of five days by his wonderful parents. Simply put, we just don't know Jim's history. It could be in that beautiful history somewhere.
Chandler would experience four daycares in his life from the age of six months until he turned five in September 2001. All of them were tumultuous, heartbreaking, absolutely negative experiences for Jim and me. Chandler, thankfully, doesn't remember much about his day care years.
The first day care we enrolled Chan in—day care A—was nearby. So we chose it based on proximity. I had to race out the door in the mornings for work earlier than Jim in those days, so Jim was in charge of getting himself ready for work and Chandler ready for day care. Chandler was only six months old, so I was pumping breast milk and freezing it. Our expectation was that the day-care providers would feed him the two or three bottles we packed for him while he was there. Chandler wasn't there long, maybe three to five hours each day. On the days I picked up Chan from day care A, he was lying in a playpen. I admit I didn't like that. I had thought or hoped that some sweet, kind Mary Poppins-like woman would be holding my baby, bouncing him on her knee and that he would be giggling and smiling and then throw his arms out to me when I walked in, and we would go home and then do it all again the next day. Nope. Not what occurred. I realize that was an unrealistic dream. I have worked in day cares. I started my career in day cares. I know what it's like. It's hard work for very little money. But this was my child we're talking about. I had very high expectations. Too high, apparently.
Chandler was always lying in a playpen when I arrived and, on what would be the last day, I arrived to pick up Chandler, one of the cranky, know-it-all, not-so-very-Mary Poppins-like day-care providers informed me that Chandler seemed much hungrier than usual today. She decided that the breast milk hadn't cut it, so in addition she gave him a bottle of soy milk they happened to have in the refrigerator and that seemed to appease him. "Why don't you think about switching to soy instead of breast milk?" she asked.
Maybe you've never seen a new anxious mother overreact, and maybe you never should. It's not a pretty sight. My face flushed. I felt a surge of anxiety rush right up from my knees to the top of my head. I'm sure I raised my voice. I may have even uttered an obscenity or two between the sentences "What do you know?" and "Who do you think you are?" Soy milk? Without Jim's or my knowledge? What if he had soy allergies? I was pumping breast milk until my nipples felt like they were going to fall off! Supplement my breast milk? I was offended, livid, and utterly indignant.
I relayed what had happened to Jim, and he was completely supportive of my decision to leave day care A. I remember calling my parents that evening crying, begging for them to take care of Chandler for the remainder of the school year. Summer was fast approaching, which meant I could be home with him all summer and look for a new day care for the fall. I didn't have to beg very hard. My parents have always been the extension of our family, always willing and able to step up and step in when needed.
So when Chandler was about a year old, we found day care B. We were able to settle into a routine with this day care that would last about eight months. It was further from our home than day care A, but it was on my way to work. So it was now my task to get myself ready for work and Chandler ready for day care every day. No easy task with a twelve-month-old who has trouble with transitions. He wasn't a toddler you could wake and rush. He would wake up easily enough but would want to linger over breakfast or not want to get dressed. He would often cry and fuss when it was time to get in the car. Sometimes it took both Jim and me to get him buckled into his car seat. This would be our first tiny peek into what was to come. I would often arrive at work feeling anxious and fretful and defeated.
One afternoon in late spring while Chan was at day care B, I received a phone call from the owner. It was toward the end of the day, but I still had students in my classroom.
(Continues...)
Excerpted from Pieces That Fit by Karen MacNeill. Copyright © 2015 Karen MacNeill. Excerpted by permission of AuthorHouse.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents
1. Where we began: Jim, Karen, and Chandler, 1,2. Presenting: When AS symptoms began, 12,
3. School: the early years, 23,
4. Sensory and awareness, 45,
5. Siblings: Braeden and Chandler, 56,
6. High School: music, writing and success, 62,
7. College: the beginning, 72,
About the Author, 79,