Living With Metal Illness:
It's Not All It's Cracked Up To Be
By Donna K. Lay, MS, LPC, CCMHC

Chapter One: My Introduction to Parenthood

My journey as the adoptive mother of a child with mental illness began about seven years ago in January of 1993. My oldest adopted daughter's journey began at her birth, if not in the womb, approximately ten years ago. I will not pretend to know what goes on inside her head, although I often wish I could. When I see her deliberately hurting herself and squeezing blood out of a cut on her finger, and see the blood she has spattered on the carpet, I react in several different modes. The mother in me feels despair that she is hurting herself, again. The "housewife" part of me feels frustration because blood stains are hard to get out of carpet. The professional side of me can tell myself (later, when I can think rationally again), that she does this to silence own emotional pain. So, I tie oven mitts on her hands to prevent her from hurting herself further. And I watch her constantly, monitoring her rapid mood changes and obsessive compulsive rituals. My world becomes centered around hers. I, like her, become a prisoner of mental illness.

Other people who know of my oldest daughter's history often tell me that I must have so much patience and that I am a "saint" for continuing to take care of her. This statement usually alarms and dismays me. I know I am not the most patient person in the world. I can vividly remember the times I have lost my temper and screamed at my daughters. I can see them putting their hands over their ears. I certainly do not qualify to be a saint, nor do I want to be thought of as one. Could everyone else cope effectively with the type of life-style? Well no, probably not. Will I stay? Yes, that is what love is all about, is it not? So, with the help of my husband, my family, my friends, and my God, in good times and in bad, I will stay. With God's help, I will continue to help my daughter on her life's journey.

This book is also not meant to be a list of "ain't it awfuls" and complaints. I do not want people to feel sorry or pity for my family. I do not expect everyone to understand. I am writing this for me because it is therapeutic to put my experiences down on paper. If someone else reads this and learns something, then that would be a bonus. Moreover, if some other family who is experiencing this too could get more ideas, or just some hope, then my efforts would be worth it. I do not claim to know all the answers and what have worked in my particular situation may not work in someone else's. These words are not meant to be a "cure-all." No two people respond alike.

I am a Licensed Professional Counselor with 14 years of counseling experience. Before I met my daughter, it was quite easy for me to sit in my office and counsel people. I felt irritated when parents would come to appointments with their unruly children. I would rub my chin and think disparaging thoughts. "Don't they know therapy is difficult, if not impossible, to do when demanding children are present? Why don't they just get a baby-sitter?"

Counseling was a passion I had, a profession I felt called by God to do. However, I could leave my office and my clients at the end of the day. I could go home, run errands, visit with friends, or go to a movie. When I saw the results of inadequate treatment for the chronically mentally ill, I felt angry and tried to fill the need as best as I could in my office by scheduling frequent therapy sessions.

Now, I live with mental illness. My home is no longer my refuge, my safe haven. I find it difficult to work professionally outside the home because of the drain on my physical and emotional resources. When I do work, I arrive at my job emotionally drained because I spent the morning trying to convince my daughter she should get dressed to go to school. During the day, I dread the phone call from her teacher telling me she had another "bad day" and that I need to take her home. I spend time explaining to my boss why I have to be absent again, so that I can take her to yet another appointment. I hope my boss understands what it is like to have a "handicapped child" and will show me some compassion. I agonize over my priorities when my boss does not understand and just wants me to do my job as efficiently as possible and work overtime.

My heart bleeds for my daughter when she asks to talk to her real mother and I have to tell her that I do not know where she is. Yet, I am thankful that I cannot contact her, knowing that any contact with her biological mother sends my daughter into an emotional, self-destructive, downward spiral. I wish she did not want to ask why her mother did not take care of her and be a "Mommy" to her. There are no answers to questions like that, at least none that would take away the pain of a ten year old little girl.

I remember the first time I met my two daughters. They were ages' two and three then. They immediately stole their way into my heart. The three year old had long, thick, coppery, red hair and serious, blue-green eyes that seemed to look right through me and read what was written on my very soul. My red-head never smiled, just stared with her penetrating eyes. I noticed immediately that one eye constantly seemed to be watching the end of her nose. She was cross-eyed and needed glasses.

The two-year old had long, fine, blonde hair, beguiling blue eyes, and a smile that could bring sunshine to a stormy night. She had a way of looking at you with those eyes and that smile that immediately made you want to do her bidding. I tickled my blonde-haired beauty and she giggled and motioned for me to do it again.

The eyes of those girls haunted me. They were the eyes of those poor souls who have seen too much too soon. Those two babies looked out at the world with the eyes of frightened rabbits. My three year old red-head could speak simple words, but mostly remained watchful and on guard. I offered her my hand and, after a moment of hesitation, her small chubby fingers curled tightly around my forefinger.

My two-year old blonde could not speak and communicated her needs by a series of grunts and gestures. Her smile and earnest look captured my heart and made me want to fulfill her every need. She seemed so helpless, so defenseless. Neither child could feed herself and both were still in diapers. I did not know it then, but I had just become a Mommy. Instant parenthood was definitely not in our plans. Those girls were supposed to be with us on a temporary basis, ninety days at the most, until their parents could care for their needs. However, unbeknownst to me, God, and two little girls, had other plans. Those two "frightened little rabbits" apparently decided at the moment of our meeting, that I was the one that they were going to come to for maternal love, nurturing, and safety. Initially, I tried to resist the role they thrust on me, but in the end, I surrendered to it. My husband and I brought them to live with us in our home.

We taught them how to feed themselves, encouraged them to speak, and acquired eyeglasses for my red-head so she could see view the world as it appeared to others. I gave the nickname of "Boog-a-loo" to my oldest daughter, (for her giggle and mischievous sense of humor), and "Sunshine" to my youngest. I sang all the songs I could remember from my own childhood. While I was singing, they would look up at me with wonder in their faces. When I finished, they would say, "Sing it again, Sing my song for me" So I would sing until my voice grew hoarse. They never seemed to tire of listening and soon they were trying to sing along.

Soon after my little "Boog-a-loo" was given her glasses she discovered the names and beauty of colors. Prior to getting her glasses, my eldest had been unable to distinguish one color from the other. Soon after receiving her glasses, she informed us, with a quiet, solemn certainty that her favorite color was purple, and so it has remained. Walking around with her new eye-glasses, she seemed to look upon a world she had never seen before. My husband laughingly said she looked like "a little professor." I bought her a small white stuffed rabbit to cuddle with as she slept as her first toy from me. She christened it "Bunny Foo-Foo." At the time, I had no way of knowing just how important that small, white bunny would be to my daughter.

My husband and I soon were witnesses to a darker, disturbed side of those two babies. My eldest would, for no apparent reason, fly into uncontrollable rages. During these episodes, she would scream with anger, bang her head against walls and furniture, and sink her teeth into her own arms. While engaged in this self-destructive behavior, she did not seem to feel any pain. Yet, after I stopped her from biting herself, I could see the deep imprints her teeth had left in her skin. My younger daughter would also fly into rages when she did not get her way, but her anger seemed to be less self-destructive. However, she had a long-lasting, piercing scream that raised the hairs on the back of your neck.

My professional training came in handy at this point. I taught my husband how to restrain those two girls in the "basket-hold" so that they could not hurt themselves further. We used time-out periods and a strict, consistent regimen of rules to shape their behavior into something more appropriate. When nothing else worked, we resorted to the "basket-hold" for everyone's protection.

One morning while I was preparing for work, I glanced in at my sleeping girls, as was my habit and saw a sight that I will never forget. According to the evidence, my little "Boog-a-loo" had vomited on herself sometime during the night. Both of the girls were covered in dried, smelly vomit that had coated their hair, faces, and hands. What saddened me the most was that neither of those two little girls had uttered a cry for help all night. They had laid in that disgusting mess all night rather than ask for any help from an adult. Even after I discovered them, both girls remained silent and just looked miserable. They didn't even cry. That is a scene that will haunt me for the rest of my life. My mind keeps asking the question: "What brutal lessons had those two girls endured in their short lives that would teach them to lay in filth without uttering a sound?"

Psychological testing informed us that our little girls were seriously developmentally delayed. This meant that they had not accomplished the "normal mile-stones" within the reasonable age-limit. We asked the local school district for assistance and discovered that my oldest daughter qualified for a pre-school class that catered to the needs of developmentally delayed children. My youngest daughter was able to receive services from a special program that sent teachers to the home to work with the parents and the child. These teachers also taught the family how to help the child "catch up" to her age-level.

Much has changed since then. The "temporary custody" lasting ninety days turned into permanent adoption. My "two babies" are almost as tall as I am. Now, I cannot imagine my life without them. Whenever my youngest daughter sees me driving into our yard, no matter how long I have been away, she runs to me shouting "Mommy, you're back!" Those two girls still ask us IF we are coming back when one of us leaves to run an errand. Those eyes of theirs still remember the painful reality that people do not always come back.

My oldest daughter has her good days and bad. On her good days, she can laugh, tell jokes, play with her dog or her toys, and talk about her fears rationally with me. I have my "Boog-a-loo" back. But then, in a second, for no apparent reason, her illnesses take her over completely. My little "Boog-a-loo" has vanished.

On my oldest daughter's bad days, her eyes are filled with hate when she looks at me as I tie the mitts on her hands to prevent her from inflicting more harm to herself. Her pretty clothes have splotches of her own blood on them. So, I make her clean the blood off her purple clothes, her ballerina sheets, the walls, her desk, the carpet, and the bathroom curtains. I instruct her to put a blood-spattered "Bunny-Foo-Foo" in the washer. I close her bedroom door so I cannot hear the foul, hateful names she is calling me because I know she is doing this to get me angry. When she tries to come out of her room before her time-out is up, I lock her door, to keep her away from me and me away from her. At night, I lock her door when she is refusing to go to sleep so I can get some rest. This is for her own safely as well as the family's. But, when I lock her door at night, I do not sleep well because I am worried that something might happen, like a fire, and she would not be able to get out of her room. Yet, I know I have to do this because, if left unsupervised, she can, and has in the past, hurt herself.

She was last hospitalized in October 1999 when we discovered she had gotten up in the middle of the night, while we were asleep, and cut all her thick beautiful, red hair off with the scissors. Her hair was so short that she looked like a Marine recruit who had just come back from the barber shop. When I asked her why she had cut off all her hair, she looked up at me and replied, "My hair was bothering me."

My husband and I talked about what she had done in frightened, yet resigned voices. We remembered all the inexplicable, strange, things she had done in the past. I tried to do as my husband have suggested and not to act angry towards her. I sent her to school with a note explaining the new hair style. Luckily, she was already attending school in a local "Partial Hospitalization" Program because of the uncontrollable violence she had been exhibiting in her previous classroom.

My professional experience warned me that her psychiatrist would want to admit her to the hospital because of her dangerous behavior from the night before. I knew that she could have cut herself badly with the scissors and bled to death while we slept, oblivious to the danger, in our beds. We would not have even known anything was wrong until we woke up in the morning. The expected phone call came in the late afternoon. The Doctor wanted her admitted that night. He said he felt her behavior was too dangerous and unpredictable to take the chance that she might do something else. I was told later, that my oldest daughter had wanted to cut off her sister's long, blonde, hair that night, but decided against it.

My husband had to work late so I told him the news over the phone. When I told my daughter she had to go back into the hospital, she wept silent tears, so I put her on my lap and just held her. A good friend met us at the hospital to lend us spiritual support. After the paperwork was completed, my daughter took my hand and walked willingly down that so-familiar hospital hallway. Most of the hospital workers remembered her from previous stays. Before my departure, I made sure she had her favorite stuffed animal, a worn, bedraggled, white rabbit named "Bunny Foo-Foo" to help her sleep. I gave her a big hug and a kiss, and then walked back through those locked doors to go home to the rest of my family.

I have given you a brief glimpse into the reality of our present circumstances. In the following chapters, I will guide you, the reader, through an honest description of my daily family life. It will contain graphic and detailed descriptions of the earliest signs of serious psychiatric illness in my oldest daughter. I will also relate how it has affected our family, financially, emotionally, and spiritually. Additionally, I will describe methods we have used in our efforts to change and cope with my daughter's inappropriate behaviors. Finally, I will illustrate how having an emotionally ill child can seriously alter and even destroy the family unit when the necessary treatment and support is inadequate or unavailable. It is my dearest hope that you will help me find solutions. Welcome to my world...

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Copyright by Donna K Lay
Library of Congress: TXu 934-671