Down Syndrome - Changed by a Child

Excerpted from
Changed by a Child
By Barbara Gill

We brought our baby home and sent out the birth announcements we had already purchased; they read "A star is born!" I remember struggling with whether to say "Amar has Down syndrome" or "Amar is Down syndrome," a puzzle that seems preposterous to me now. Friends and relatives came to visit, bearing gifts, condolences, comfort, and encouragement. We were enrolled almost immediately in an infant-stimulation program, and in addition to baby care the days were filled with in-take meetings, assessments, therapy sessions, and visits from the public health nurse. The busyness of these early weeks distracted me from my grief, but I was reminded of it every morning when I woke with the familiar heavy feeling in my chest. Somehow I found the time and will to complete the questionnaire from our childbirth-education class. I described our feelings of shock, disbelief, and incredible sorrow, and although I wrote that "Amar's new life deserves celebration," it would be a long, long time before that belief was not shadowed by sadness.

In the fall I returned to my job at the Minnesota Attorney General's office. A few years later we moved to Texas, where our second son, Samsher, was born. I quit work altogether to care for the boys. As the years went by, Amar moved from an infant program to an early childhood program. We returned to Minnesota, where he began public school. Life went on, and it was a normal family life but one always complicated by Amar's disability, with all its consequences and implications, ranging from chronic ear infections to disagreements at school to having a two-year-old who could talk better than his six-year-old brother.

Parents of children with disabilities often compare their experience to riding an emotional roller coaster. It's a good analogy, and as I consider the seventeen years of our life with Amar, I find myself drawn to a related image, that of a spiral. As the years with a child go by, the same intense emotions recur-the sudden, unexpected drops into rage and grief, as well as the upswings into relief, joy, and love. The issues and tasks repeat-we do too much work with too little sleep, struggle to maintain a balanced life, confront a health crisis, or celebrate some small accomplishment. But each time, we do so on a different level. Times change, our child changes as he grows, and our journey changes us, so that how we negotiate the tenth coil is different from how we rounded the second one.

As I have traveled the spiral of our lives I've made gains that have stayed with me. I have learned that our experience is not simply personal, but that social paradigms, politics, and economics shape Amar's life and ours. I am aware that political activism can change those circumstances and I know how to participate in the powerful grassroots movement to secure the civil rights of people with disabilities. I no longer believe, as I once did, that Amar has to be separate because he is different, or that he can live or learn or work only with others like himself, under the guidance of specially trained people. I understand that power is never ceded but must be seized, and that Amar himself has the most potent vision of his future.

On every level I have learned, and learned again, to "go with the flow," to let Amar show me what he needs and what will work. I've learned to appreciate who he is and meet him on his own terms. I've learned to trust my instincts and to be happy with our life as it is. I have learned to let him grow up: Amar is no longer a boy, and his father and I will not be here forever. Every day I feel my love for Amar and his for me. I am proud of the young man he has grown up to be and I take joy in his loyalty, affection, and mischievous wit.

But on every level of the journey I have also had to experience its negative aspects. On each round I wade again through pain and sorrow. I slip into letting Amar's problems-or the world's problems with him-obscure his beauty. I give way to rage, frustration, and self-doubt, turning up the volume on what others are saying and losing the voice of my own heart. At each turn I have fought good fights and picked bad ones, both at home and out in the world. On every level of the spiral I have had to find a new beginning of happiness and acceptance, and to rediscover the need for inner sustenance. Again and again I make my way back to what I somehow knew at the outset, that Amar's life deserves celebration, and back to the larger truth, that each life and all of life must be celebrated.

My greatest challenge arose in the spring of 1987, when, following Amar's disastrous first-grade experience, Harjinder and I determined that he should be in a regular classroom at our neighborhood school. Although our district officials were reluctant, they agreed to the change, and Amar started first grade over again that fall, climbing on the bus with the other kids in our neighborhood. Through this action I was drawn into the inclusion movement, which I hadn't known existed, and there found confirmation and support for many of my own ideas. The people I was meeting-educators, advocates, and other parents-also stretched my thinking as they articulated dreams bolder than those I had dared to have for Amar.

As that first year unfolded it sank in on me that gaining Amar's admission to the classroom was only the first step. There were many problems to be solved along the way. Amar was the first student in our district with Down syndrome-the first student considered mentally retarded-to be fully included. We were the ice-breakers. Many people were being asked to make a big change, and they were uncomfortable with it. There was open opposition and even hostility on the part of some teachers and parents. Amar's teacher was willing and highly experienced, but she had never done anything like this. Just having an aide in her room was new. Even though we had the advice and support of our lawyer, an inclusion consultant, and others, ultimately we were on our own in working with the school and getting along in our community.

Effectively including Amar was neither easy nor quick. In spite of fabulous successes on his part-he learned to read and passed the standardized reading test at the end of first grade-it was tempting for everyone to focus on where he fell short. His speech was hard to understand and his behavior was sometimes over the edge. He painted on other kids' clothes, hid under his desk when frustrated, and did not understand that when the teacher asked, "Would you please read now, Amar?" it was not acceptable to answer, "No." Each succeeding year meant a new teacher, a new team, new issues. We were caught up in a huge personal and institutional change. Many times I questioned whether we had chosen the right course and wondered whether we would have the stamina to follow through on our decision.

Because of my experience with Amar and my activities in the inclusion movement, I began to get invitations to speak to parents and educators. Eventually I left my job as an attorney and worked as a consultant and trainer. Everywhere I went I talked to parents - mostly mothers-who were fighting battles at school. I fell into the trap of thinking that I had to be the "expert," to provide answers as they shared their situations and frustrations. But so often what I could offer seemed to be of no help. Frequently what I said was answered with "Yes, but." When I thought about that "but" from my perspective as a parent, I knew what was on the other side of it: the need for encouragement and for acknowledgment of how complicated, difficult, and lonely the task was. There were no easy answers or quick solutions. There wasn't a right way to do it. No matter what problem each family was trying to solve for their child, they had to decide what they wanted and what they were willing to do to achieve it, and then had to hoe that row each day. People could give us advice, information, and encouragement-and those were all important-but they couldn't do the job for us. The parents I was meeting did not need analysis or argument. They needed what I myself wanted: validation and support.