Three years ago, at 4 am in the morning, my life began to unravel when my daughter sank her teeth into the fleshy part of my inner thigh. “Mommy, please help me!” she begged as she fell to her knees and grabbed my legs. Then she clamped down hard and held on tight like a pit-bull. I screamed, her teeth still embedded in my inner thigh. When the policeman approached her, she kicked him. He faced her down and handcuffed her. Two emergency responders strapped her into a gurney and shuttled off to the hospital. That morning we had seen a Cognitive Behavioral Specialist for my daughter’s nocturnal panic disorder and its resulting insomnia. This specialist had confronted her: “If you continue keeping your mommy up at night, she will get sick!” This, of course, was the trigger that set her off that night. Ever since her dog had died, she had been terrified of falling asleep. Her solution was to stay awake.
When I arrived at the ER, I learned she had bitten hospital personnel. This explained the 4-point restraints and a bleeding catheter hanging between her bare legs. She remained in 4-point restraints until evening when involuntarily admitted into acute psychiatric care.
How had my cute, beloved autistic child grown up into such an ugly dangerous adult? For 26 years I had allowed myself be held captive by her angry outbursts, and had vehemently sought absolution. What more could I do to help this wild (adult) child acquire impulse control?
Five Days Later
The jury approved an additional two-week commitment, but I convinced them to discharge her into pending 24/7 in-home supports. Within two weeks, I had two awake staff all night long, 7 nights a week. They blocked her from beating on my bedroom door. In response, she threw household objects at them and threatened to kill them.
Each night, I lay wide awake locked up in my bedroom listening to her tirades, shuddering like a victim of an air-raid. In the morning, I got up, made her breakfast and went to work, leaving her in the care of the next shift.
It was agonizingly stressful trying to adjust to the 12 different people coming and going in and out of my house day and night. My feelings of discomfort with the strange people awake all night in my living room resulted in forfeiting all urges to go downstairs for anything, not a cup of tea or a snack, not for anything. I reassured myself that all of those people were necessary to keep my daughter out of institutionalization. I honestly did appreciate them tremendously. So, why was I so miserable?
Even when her screaming out for me began to diminish and her insomnia improved, I did not. It wasn’t until she began smiling again saying, “I love you mommy!” that I began to confront the source of my own pain and suffering.
At first I thought I was merely sick from the deadly antibiotic I had taken in order to prevent infection from the human bite I had sustained. The antibiotic did carry a warning label: Can cause serious diarrhea. I had a stool sample taken. The lab test came back negative. Then I rationalized that it must be exhaustion and disorientation from my loss of control over my own home that was causing me to feel so ill. I was having flu-like symptoms – night sweats, chills, chronic diarrhea, stomach pain and no appetite. I was restless, irritable and couldn’t concentrate.
When I could no longer eat anything, I took myself to the emergency room with my suitcase packed. I wanted to be admitted. At least I could receive IV fluids and some rest. The ER doctor grinned. “You think you need to be admitted, huh?” he joked. He had been on duty that dreadful night. When he inquired if she was still living at home, he ordered a CT scan, pumped me intravenously with Pepcid AC and sent me home with a tranquilizer.
“Ok, so now what?” I argued with myself. And then, in the midst of my angst, a subtle but miraculous thought revealed itself. “I don’t want to live with her anymore!” I heard myself blurt out loud. This was not a new revelation but I now had a new level of conviction. The power of that thought in that particular moment opened me up to a visceral state of self-preservation. When your baby bites your breast, it is time to wean! And so, I went home that night a changed mother.
Initiating the Disengagement Process
I began keeping an overnight bag packed. On nights that I suspected she might tantrum, I called on friends for a place to sleep. When she started screaming at me, I walked out and sat in public places like the library, or my car. Instead of attending to her every need, I began focusing on my own health.
Eating caused an icy feeling that started in the pit of my stomach to shoot up my neck and down my arms and legs ultimately produced a sickly weakness similar to shock. My temperature hovered between 96.1 and 97. I was cold all of the time. I lost 15 pounds. I took a cot and sleeping bag up to our third floor finished attic space, put a “PLEASE DO NOT DISTURB” sign on the door and installed a chain lock.
Was I insane? For 27 years, I had been a mommy that tolerated being hit, kicked, screamed at and even bitten. I had been a mommy who would religiously wake up each morning and serve breakfast with a smile as if nothing bad had happened! For the past 27 years, I had been possessed by motherly preoccupations with a child who would never grow up and may never stop being abusive! It was time to take charge over this intolerable situation! I requested an out-of-home placement.
Crushing News Leads to Greater Understanding
My heart sank when we were denied residential housing. Again, my daughter went out of control! I barely escaped out the front door. She pursued for a full city block screaming at the top of her lungs that she was going to kill me. A neighbor called the police. By the time they arrived we were both back inside and she was calm.
That’s when it dawned on me! My daughter thought being a tyrant was normal. That night, I had the most important conversation with her I will ever have. I calmly and clearly explained that if she ever tried to hurt me again, she would go back to the psychiatric hospital and NEVER RETURN HOME. I meant it. This was not a threat. I finally was able to communicate in a way that she understood. If she wanted all of the good things her mommy and daddy provided her, she needed to stop hurting me.
Service Dogs to the Rescue
After a year and a half of waiting, our daughter was finally matched with a specially trained companion dog. His name was Hagley, a strapping 83 lb. yellow Labrador Retriever. His “work” was to sleep with our daughter. With the comfort of his warm body snuggled up against her, she began sleeping through the night.
Through commitment to her new dog, she began caring for others in a way that 25 years of strategic interventions had not accomplished. One day she instructed him to “load up” into the car. She had forgotten to stand out of the way. As he jumped through the opening between her head and the back seat, he hit her chin so hard it caused her teeth to sink into her lip and split. She had bitten herself. When I then explained, “You have to get control over yourself, so you can get control over your dog,” she didn’t start screaming at me. Instead she just replied: “You’re right mom.”
In three short months, Hagley single-handedly replaced the need for all overnight staff. I moved out of the attic and back into my bedroom and resumed enjoying tea and TV in my living room until the fatal night we rushed Hagley to the emergency animal hospital where he was diagnosed and died of kidney failure. We were devastated! And, our daughter’s sleep disorder returned with a vengeance. We were all miserable, and grief-stricken but at least the violence did not return. Soon, the service dog agency replaced her yellow lab with a black one. We participated in the graduation ceremony all over again with a new dog named Duff. It was love at first sight! We all breathed a sigh of relief.
Temporary Inconvenience, Permanent Improvement
We decided it was time to initiate the next level of separation by selling our town house and buying a duplex: one side for her and the other for us. We figured we could at least afford a wall between us.
We found a house with a mother-in-law apartment and frantically stepped up the process of selling our home. Cleaning, painting, floor replacements and trying to keep it looking like Better Homes and Gardens was a feat, but we moved into our new life on a cold afternoon in March. The plan was simple: Daughter gets the 3-bedroom house and rents 2 rooms to compatible peers. We live in the efficiency apartment. This was the best we could do, and all that we could afford.
The Final Battle
We had moved twice before, each time had resulting in psychiatric hospitalization. This time was different. I could retreat into my apartment and lock the door. It worked for a few months. Then one day she launched a physical attack. I reached the door of my apartment, entered quickly and locked it. I warned her: “If you don’t calm down, I will call the police!” She replied in her evil cartoon voice: “HA HA HA, I will NOT allow this door between us. Then she picked up a chair and began beating the door down. Unfortunately it was hollow. I grabbed my cell phone and her service dog and headed for the car. I called the police. Four policemen arrived. The next day we bought a solid wooden door. I reiterated: “Either you accept the door, or back to the psychiatric hospital you will go.” She conceded. And that was the last physical attack she ever launched on me. Twice she initiated a head butt maneuver. Both times her head came within two inches of mine and stopped. She was acquiring rudimentary impulse control.
Hope is Restored
Today marks our first year anniversary of living with a wall between us. We now live in an old house with a huge yard, in need of extensive repair. Management is a full-time job, of which I do not get paid. Consequently, we have downsized to one salary and one car. But, we are making progress.
Our daughter continues to improve. Yesterday, while driving, she began running one of her standard petty tyrant routines. I reminded her she was dependent on us for the ride. She threatened me in her familiar sing-song voice, “I’ll punch you in the face!” I ordered my husband, “Turn the car around!” She shouted, “No! No! No! I didn’t mean that literally, I’m sorry!” We all laughed and kept right on going.
Alexandra Bricklin is a music therapist currently living with her husband in an apartment above the garage of the house owned by Rebecca Bricklin’s Personal Assurance Team Inc., the corporation founded to create and protect quality of life across lifespan for their daughter Rebecca and two roommates. To learn more, visit our Facebook page, Rebecca Bricklin’s Personal Assurance Team Inc. at www.facebook.com/CormmunityforRebecca or contact Alexandra at firstname.lastname@example.org.