Pieces That Fit: A Mothers Journey Through Her Son's Puzzling Diagnosis of Asperger’S Syndrome

By Karen MacNeill

Pieces That Fit is a powerful story based on one womans struggle to raise an autistic child. Karens raw, emotional candor will move you throughout your reading experience. Karen began this journey during Autism Awareness month in April 2014, when she wrote a post a day for thirty days. She received so much love, support, and encouragement from those posts that she is now sharing her journey, hoping to reach a bigger audience so that others may have a better understanding of their own journey and struggles.

She hopes this book will be a message of hope to others who have struggled or are struggling with this puzzling diagnosis. The book begins with Karen meeting her husband, Jim, in 1990 and moves on to the birth of their son, Chandler, who is afflicted with Aspergers syndrome. Karen describes in detail her frustrations, anger, and bitterness through the ordeal of having Chandler diagnosed. She takes her readers through difficult situations, tantrums, and tears in a uniquely honest and moving way. From frustrating meetings with teachers to even worse day-care experiences, you will find yourself rooting for this boy and his family to succeed. In between, Karen and Jim have another child, Braeden, who couldnt be more different than his big brother, and new challenges begin to emerge. With a new brother, however, successes begin to mount for Chandler. Finally, Karen brings us a message of hope as Chandler grows up and learns to live with the autistic traits that are uniquely his. As Chandler finally begins to succeed in school and in life, you will be cheering and fist-pumping in support of him.

• Language: English
• Publisher: AuthorHouse
• Release date: Feb 13, 2015
• ISBN: 9781496970084

Karen MacNeill

Karen has been a primary school teacher for the past twenty-four years and considers herself a champion for children. Having raised an autistic child for the past eighteen years, she has developed the patience and understanding to nurture children. She is a strong advocate for all children, both special needs and neurotypical, and continues to strive to foster a positive, caring, and fun environment for all children to succeed in. Her father was in education, and she followed in his footsteps. He often joked that “this is evidence insanity runs in families,” but it seemed natural for her to take that path, and she did so happily. Her dedication to her family, her school, and, most important, her students has provided for a very rewarding life, both professionally and personally. She knows there will always be challenges along the way in education, in her classroom, and with Chandler, but her experience has allowed her to overcome anxiety, fear, and trepidation and to move forward positively. Karen was born and raised in southern Maine and continues to live there, near the coast. She remains active in her community as she feels that all families need a helping hand at one point or another. She values her family, her friends, her job, and her two dogs.

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© 2015 Karen MacNeill. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 02/13/2015

ISBN: 978-1-4969-7009-1 (sc)

ISBN: 978-1-4969-7008-4 (e)

Library of Congress Control Number: 2015902399

Print information available on the last page.

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

1 Where we began: Jim, Karen, and Chandler

2 Presenting: When AS symptoms began

3 School: the early years

4 Sensory and awareness

5 Siblings: Braeden and Chandler

6 High School: music, writing and success

7 College: the beginning

About the Author

Dedicated to the best thing I have ever created. My family. Jim, Chandler and Braeden.

Thank you to my parents, Paul and Stella Seavey, and Jim’s parents, Pat and Lou MacNeill. You have always been there to support us from the outside in.

1

Where we began: Jim, Karen, and Chandler

W hen 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:

• 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