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Was placement the right decision?

It has been two years since the day we tearfully said good-bye to Stephanie in the residence hall at St. Coletta School in jefferson, Wisconsin.

She was 13 years old, aware that something big was happening, but puzzled about our sadness. As her parents,, we were accurately aware that in the days to follow she would look for us and we wouldn't be there. SHE WOULD MISS OUR HUGS, our words of assurance, our familiar activities. She would feel alone and frightened, and would not understand. That knowledge made our farewell all the more painful. Although Ron and I were divorced, we remained close as Stephanie's parents. She was always with one of us, and we continued to share pleasant experiences as a family Would she think we had abandoned her?

As I held Stephanie and kissed her forehead, promising I would see her soon, I fought the impulse to carry her and her suitcase back down the stairs, to the safety of our car and the security we had known before this wrenching moment.

I was suddenly overcome by a furious swirl of confusion. Inner voices drowned each other out in a debate that probably lasted no more than five seconds - five long seconds in which I could still change the course of this stinging reality.

With gentle encouragement from one of the residence group parents, Ron and I hugged Stephanie once more before she was led down the hall to her class in the school building.

We grieved. We felt a loss that mimicked death. Stephanie was our only child and now we were, in a sense, giving her up. She would still spend time with us. She would return to Ron in Texas for holiday vacations and would spend frequent weekends with me in my new home in Madison, 40 miles from the school. Even so, things would never be the same. LOOKING BACK

For many years I had been active, both as a parent and a professional, in the Association for Retarded Citizens in Austin. There I enjoyed some of the closest friendships I have ever had with other parents of children with mental retardation. Over the years, we supported one another through many trying times, counseled each other through tough decisions and laughed together over our predicaments in a way no one else would understand.

In the safety of that group of parents (mostly mothers), we could truthfully examine the impact of our children on our marriages, our relationships with immediate and extended family members, friends and society in general. Each story was different, but some common concerns prevailed.

One that loomed more and more ominously with the passing years was the question of how to provide for our sons and daughters as they approached adulthood and the end of publicly-supported schooling.

We became increasingly aware of the youngsters graduating from special education programs. Only a select few were capable of finding employment. Even fewer were eligible for the handful of group homes. All too many found themselves placed in sheltered workshops where an atmosphere of stagnation held little promise for movement into the mainstream workforce. Some fell between the cracks and stayed home all day watching television.

Efforts to remedy the situation would typically receive a lot of parental and community support in the early stages. But as the wearying process of lobbying legislators and city officials dragged on, the cause would lose steam and finally fizzle out. Grant proposals were drafted and turned down.

And when a rare victory was realized, the work was still not finished. There was the uninformed and fearful public to deal with. Community group homes were fine, they seemed to say, but not in our neighborhood. THE RESIDENTIAL SOLUTION

I first learned of St. Coletta from a graduate of the school. Kevin Tracy was a young man hired to spearhead the Self-Advocacy Program in Texas. Kevin was the most articulate and capable person labeled "mentally retarded" that I had ever met. He was aware of his learning problems, aware of how he was perceived by others and able to explain to the rest of us how we so consistently underrated and undervalued people with developmental disabilities.

Kevin and I were co-workers. Through my conversations with him I became interested in the school he credited with his achievements. I kept it in the back of my mind as a last resort if opportunities and challenges for Stephanie in Austin did not materialize.

I didn't talk about it with my friends. I do not recall talking about it with anyone for a long time. Part of the reason was that I was one of the most vocal advocates for community living and employment. St. Coletta, even though it was highly regarded as a model for academic and social skills programming in a residential setting, was by definition an institution.

How could I maintain my credibility if I was even thinking about sending my daughter to such a place? And, even more important, how could I reconcile such a decision in my own mind?

Still, I wanted to know more. As Stephanie neared adolescence, I felt even more that she was not getting what she needed to grow socially and intellectually to her full potential. For several years she had been on a developmental plateau. Even though we were told this was to be expected as she got older, I could not accept the idea that her threshold of learning had nearly been reached.

One day as I was pouring over a book catalog, my eyes stopped at the title, Developmental Disability, A Family Challenge. The author was Sister M. Theodore Hegeman of St. Coletta School. That night I wrote my first letter to the school's administrator, asking for more information. I remember feeling it necessary to explain that I was philosophically opposed to self-contained, separate facilities for people with mental retardation, but I thought it was a good idea to learn about every possibility for my daughter, just the same.

Sister Elaine wrote back, enclosing a brochure, a newsletter and an application form. Her letter was succinct, with an acknowledgement that St. Coletta was not for everyone, but offered many opportunities for those who lived there. I read the letter two or three times, then filed the little bundle of papers in a manila folder. A REFUGE FOR THE FUTURE

I don't remember what actually spurred me to look for the folder two years later.

Very likely, it was an

accumulation of things.

Stephanie was maturing

physically, making her eventual

adulthood an undeniable reality.

I was unhappy with the quality

of her education programs. And

I felt exhausted from trying to

squeeze the blood of a secure

future from the turnip of the

system. Undoubtedly, I began

thinking of St. Coletta as a refuge

from the continual onslaught of

conditions that only made me

more apprehensive about

Stephanie's future.

In January, 1986, Ron,

Stephanie and I made the trip to

Wisconsin to see the school and

meet the staff. On a sunny, very

cold day we were escorted

through the school, the junior residence hall, the dining room, the chapel and the indoor swimming pool.

We talked with several staff members and Sister Elaine. Stephanie was evaluated briefly by the school psychologist. Everything was conducted in an atmosphere of calm sensitivity. We were impressed with how the staff interacted with the students and adult residents. Never condescending, always attentive and sincerely friendly.

We were glad to see that the rooms in the residence hall reflected the tastes of the individuals who lived there. Each room was shared by two girls. Stereos, posters, bulletin boards checkered with photos and greeting cards, collections of stuffed animals, all attested to the emphasis on personal expression. A calendar of upcoming events included Girl Scout meetings, museum trips, dances, athletic events and birthday parties.

The living area was a comfortable room with tasteful furnishings, plants and a television. Although it wasn't home, the environment mirrored a commitment to making everything as homelike as possible.

We left St. Coletta with positive feelings. We talked to Stephanie about the possibility of her going to school there and living in the dorm with new friends. We explained that this would help her grow and learn. As much as we could, we prepared her for what it would be like if she lived there. A TIME TO MOVE; DOUBTS AND FEARS

When we received notice that Stephanie had been accepted at St. Coletta, I decided to proceed with plans for my move to Madison. I had already made my move a condition of her going to school so far away from home. If we were both in it together, I reasoned, we would both be able to handle the changes with the least trauma.

During those months of preparation, I found little time to dwell on what might lie ahead. There was so much to be done. But in the quiet times, when I was alone and packing the books, photos, and countless reminders of the good times spent with Stephanie, with family and friends, I would freeze with doubt and fear.

I thought about Stephanie's joy at coming home on the bus after school. I thought about the picnics in the country she enjoyed so much. She loved to spend time with her grandparents. She was comfortably familiar with her surroundings and counted on certain activities, like Sunday morning breakfasts at our favorite bakery, to provide her with reliable continuity.

Would removing her from all that counteract the ONE YEAR EXPERIMENT

We realized the question was unanswerable until we tried. Initially, we saw the move as a one-year experiment, after which we would evaluate Stephanie's progress and her happiness.

At the end of that first year, we saw marked improvements in Stephanie's speech and her daily living skills. We were pleased that she was so well-liked and had made what appeared to be a fairly rapid adjustment.

The first year was a time for Stephanie to become accustomed to the new routine of living away from home, yet coming to Madison every other weekend and flying (by herself) to Texas for Thanksgiving, Christmas, Easter and summer vacation. Gradually, she understood that she was not in exile.

Her progress has been heartening. She is growing intellectually and socially. More and more, she is taking an interest in her surroundings, her personal appearance and her capabilities. A recent trip to the library, where she signed for a library card of her own, was a proud moment.

There are measurable gains. But there are questions as well. Would she make those advances anyway? Is she getting enough individual attention? Is she happy? THE EXPERIMENT CONTINUES

For now, we are starting a third year of the experiment," realizing that each year builds on the last. This one is beginning with promise. Stephanie seems more content than before. She seems more interested in

the other students and the

activities they share as a group.

But it is still difficult to be

separated. Taking Stephanie back

to school after a weekend, I

always feel a little tug. I walk

with her up to her room, wait for

her to get ready for bed, and tuck

her in as if we were at home.

When I walk out the door, it is

never without a subdued longing

for a normal" family life. And

in the back of my mind, there is

always the question: Did we do

the right thing?

Like so many other parents

who make momentous and

difficult decisions for their

children, I take solace where I

find it and go on with life. While

driving back to St. Coletta at the

end of our most recent weekend

together, Stephanie was sitting next to me in the front seat of the car, enjoying listening to her favorite Talking Heads tape. Suddenly, she turned to me and said, -1 love you, Mama."

At that moment, Stephanie reassured me that after all we've been through, our love survives. That certainly propels life forward. There may be more hard decisions ahead, but as long as we make them in the spirit of love, we can give up the need for absolute answers.
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Author:Moczygemba, Carol
Publication:The Exceptional Parent
Date:Nov 1, 1989
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