History

Tristan’s Quest, Inc. was founded in June of 1999 by Dr. Jean and Richard Allen, whose 16-year-old son, Tristan, died during a physical restraint while in treatment for a severe depressive episode. Dr. Jean Allen, who is the Executive Director of Tristan’s Quest, holds a Ph.D. in Child Development and Family Studies with a concentration in Special Education-Learning Disabilities. Dr. Allen has adopted five special needs children, has fostered 18 high-risk children, and has been a role model and mentor for many of the students she has taught or tutored. She has more than 30 years experience working with and advocating for children with special needs, including ten years of clinical experience facilitating short-term study skills clinics with small groups, as well as working individually with children who face emotional, behaviorally, and/or learning disabilities and their families.

IN MEMORY OF OUR SON TRISTAN MICHAEL SOVERN
JUNE 25, 1981 – MARCH 3, 1998

Who Was Tristan?
A Mom’s Remembrance

            
           

Tristan Michael joined our family in April of 1982. He came as a foster baby and was supposed to stay with us only until a long-term institutional placement could be arranged. At ten months of age, Tristan was only functioning at about a 3-month-old developmental level. His large head with prominent forehead teetered on a small, flaccid body, and he appeared to a casual observer as an “out-of-proportion” little human being.

The moment the social worker handed him over to me, I bonded with this baby. He had dancing grey eyes and a crooked smile that melted my heart right away. His diagnosis was pervasive developmental delay and the prognosis given the me was that this baby was probably extremely retarded and that he might not ever walk or talk, but I saw “more” behind those intensely grey eyes.

I immediately began to try to convince the social workers not to pursue institutionalization, but to let him stay with us for awhile to give his development a chance.

It was a family effort, and we spent many hours each day exercising his arms and legs, providing visual and auditory stimulation, and giving him all the love and affection that we could.

Tristan, the child who “might never walk or talk” took his first step at 15 months. It was a long uphill climb to achieve true mobilization, because he stumbled and fell with almost every step. A year or more of physical and occupational therapy helped his coordination and “the little guy with those grey eyes and crooked smile” learned to walk, run, ride a trike, climb a tree, play soccer—and he was always everywhere at once—eyes dancing and the crooked smile ever-present.

Tristan did not make typical baby noises. I knew he wasn’t deaf because he would look up as jets flew overhead or as pots and pans crashed and banged as children helped to do the dishes.

After testing from many specialists, we learned that Tristan had a 40% hearing loss in both ears and the “speech-range of sounds” was not being processed. Tristan had surgery and miraculously began to make sounds within a few days. His speech initially had the monotone of a hard-of-hearing or deaf child and as we read and talked to him everyone exaggerated sounds and talked with hyper-inflections.

Tristan showed an early affinity to letters. As I introduced the alphabet to him and his brothers and sisters, he was fascinated by their shapes, their names, and their sounds. He began to see letter shapes in the clouds, to use sticks and rocks outside to form the letter shapes, and to play in his cereal each morning and line up his Cheerios to form his ABCs. Once he learned the concept that letters formed words, words made sentences, and sentences made books, he was hooked. He read early and maintained an affinity for books until his death.

         

Tristan was extremely hyperactive as a toddler and young child and although he was “one of many” among our adopted and foster children I always felt like I knew how mothers of quadruplets or quintuplets feel! He was a handful!

Schooling would become another real challenge Tristan. His hyperactivity and poor social skills with his peers was a continual concern. But Tristan was lucky enough along the way to have some “true educators” who could see beyond the surface to the potential locked inside this “boy with the crooked smile.” Tristan did learn. His affinity to letters and words led him to be first runner up in the school spelling bee in the fourth grade.

School presented Tristan and us as a family with some of our darkest moments as well as a few times at the “top of the mountain.”

Children were cruel at times and Tristan’s physical features provided fertile soil for the cultivation of rude comments and cruel pranks. However, I choose to remember the triumph—in the Spring of 1993 when Tristan delivered his “self-composed” address at the promotion ceremony for the fifth graders at Alamance Elementary School. He cited each teacher he had had since Kindergarten and thanked each one personally for some special thing that she had taught him. There was hardly a dry eye in the place. Those moments can never be forgotten!

Tristan had early on, since about the third grade, exhibited severe mood swings and behavioral outbursts and had shown classic symptoms of manic depression (bipolar disorder). A barrage of different medications and side effects put our family on a roller coaster of emotional ups and downs. However, all during this time, we tried to do a variety of family activities.

Adolescence, however, sent Tristan and our family reeling. We managed Tristan at home until his behavior warranted constant supervision to ensure that he did not hurt himself or our other children.

We placed Tristan in an excellent residential facility, but the down side was that it was on the other side of the state from where we lived. There are very few facilities, especially very few good facilities, that are set up to handle children with severe emotional and behavioral disorders. There was no support group in our community and my husband and I felt we were sailing “uncharted seas with no compass” as we tried to find a good placement for our son.

Tristan did well at the residential placement and the caring, compassionate, and well-trained staff helped him with his behavior, as well as with academic and self-esteem issues. We traveled once or twice a month to the other side of the state for one-day visits. With all our other family obligations and commitments, it was an exhausting ordeal, but Tristan was very firmly planted in our family and we were there for him.

Tristan was moved back to our home county in June of 1997. His transition to the new group home took some time, but it was great chatting with him on the phone almost every day and taking him on family outings more regularly. During this time, Tristan had the opportunity to challenge himself on a variety of field trips and excursions. He hiked a portion of the Appalachian Trail, he studied the salt marshes on a camping expedition at the beach, and he faced and conquered his fears when he successfully completed a white-water rafting trip! The young boy was becoming a man. His most important goal during this time was to complete high school and graduate as a part of the class of 2000. He wanted to get a job!

Tristan’s passion for automobiles, which began as a toddler, remained strong. He could identify all makes and models of cars we passed on our family outings. He memorized the “stats” on the latest high-ticket luxury cars and delighted in sharing this knowledge with anyone who cared to listen. He loved to tell jokes and riddles and genuinely loved life. But Tristan had darker moments, too. Events of his life and of the world caused him great anxiety and distress.

Tristan was a worrier! A chain of events over the course of his last few months led to a depressive episode which on February 26, 1998, precipitated our placement of Tristan into a private psychiatric hospital because of his suicidal ideations. Tristan was dead six days later. Although there are disputes over his actual cause of death, the facts of a restraint and seclusion the evening of his death are not disputed.

Five staffers restrained Tristan face down on the floor and used a towel and a bedsheet wrapped around his mouth to prevent his spitting or biting. When we were notified, Tristan was already dead.

An indictment was brought against one staff person who took part in the restraint; a jury found this individual not guilty.

With all of his own problems, Tristan always worried and fretted over all the other children who, in his opinion, had problems more severe than his own. He had a big heart and never lost his ability to lighten up a room with his crooked smile and dry wit!

My husband, Richard, and I will continue to work to see that unsafe practices are changed and that laws are passed to regulate the use of restraints and seclusion in hospitals and treatment centers. We have met with Congressmen since Tristan’s death, and I testified before a Senate committee in Washington, D.C. in April of this year.

June 25, 1999 would have been Tristan’s eighteenth birthday, and on that day, an administrative order came out of the White House which put into effect the following:

  • Eliminating the use of restraints except as a last resort. These new regulations will prohibit the use of inappropriate physical or chemical restraints in acute care, psychiatric, rehabilitation, long-term care, and children’s hospitals participating in the Medicare program, except when patients are in danger or are endangering the health and safety of others and only with a written order of a physician. The regulations also require staff to be educated and trained in the safe use of seclusion and restraints, as well as the techniques for handling behavior, symptoms, and situations that traditionally were treated through the use of restraints and seclusion. Currently, restraints are sometimes used by facility staff as a way to discipline patients who are difficult to control.
  • New reporting requirements to hold providers accountable. These new regulations require providers to inform the Health Care Financing Administration (HCFA) of any death that occurs when it is reasonable to assume that the death was caused by the use of restraints or seclusion. Any facility that is found to be out of compliance with the new regulations will be prohibited from participating in the Medicare and Medicaid programs.
  • New efforts to educate patients and their families about their rights. The new regulations require hospitals to notify patients about their rights, including the right to be free from restraints and seclusion. Each patient must be informed of his or her right to request or refuse treatment and to be involved in the development and implementation of his or her plan of care. It also includes patients’ rights to formulate advance directives and the right to be expect that the hospitals will comply with these directives.
  • New commitment to extend these protections to all providers covered by the Medicaid program. Included in the announcement was the fact that Secretary Shalala has agreed to work to extend similar protections to residential care facilities for children and other providers participating in the Medicaid program by the end of the year.

“Tristan, may the foundation always work to make the lives better of ‘all the other children’ who face similar challenges that you did. May we always strive to help those children and their families reach out of the darkness and into the light of triumph at the top of their mountains.”
—Jean Allen