Nearly two decades after entering the field of special education more by accident than by design, my interaction with parents of children with special needs continues to remain amongst my most poignant and enduring moments and memories. Each time I interact with a parent who has come to us seeking advice, admission, reassurance, I can mentally visualize and chart the journey they have taken so far and will need to take in the future. I wonder whether the parent has the physical and mental stamina, the resilience to face the various setbacks that will accompany the journey on unfamiliar and uncharted territory and the financial and other resources, so essential in mapping the life of a child with special needs. Much may have changed in the profession of special education: there is early and better diagnosis, early intervention has made great strides, more professionals are available, support groups are more common, newer therapies are being tried; but what remains unchanged is the trauma, the guilt, the anger, the regret, the anxiety, the fear, the despair, most parents face when first confronted with a situation not of their asking or making, a situation that is unknown and frightening because they fear not just that the future is bleak and uncertain, but that there is no future.
The biggest and most important challenge in special education is our work with the family. We encourage parents to speak up and speak out and listen unprejudiced and with objectivity when they talk. In order to help parents articulate a vision for their child, we work with them to inspire confidence in themselves, in us, and in their child. By the time parents approach us, most are exhausted with the rounds of various professionals and are initially relieved that for some years at least their child will be at school and their concern about the future can rest for a while. The support group at school and the regular interaction with other parents in a similar situation, interaction with ex-students, and parents all help in keeping hopes of an independent and productive future for the child alive in a new parent.
I am often confronted with questions for which I have no immediate answers. One such question is, “What will be the future of my child?” One can empathise with the anxiety and fear that prompts the question, but the words of reassurance often sound empty and meaningless. What does one say to a parent who confides that her daily prayer to God consists of just one line, “Please take my son before me.” Are words enough to assuage the guilt of a mother who is convinced that her daughter’s disability is the result of her having had some medicine to ensure that her unborn child is a male? How does one confront the anger of a parent who feels that his son’s difficulty is due to medical negligence at birth? A family that has a child with special needs often goes through such emotional upheaval that the scars take years to heal, if they heal at all.
As the school works with the parents for the development of the child, learning takes place for all. Many positive changes have been brought about in the school because of parental suggestions and insistence. By listening to and respecting the views of the parents on their child, for they know their child best, the school has been able to bring about a positive attitude in the family with regard to the child’s future because we are equal partners. We are not infallible however, and we do make mistakes, we can under or over estimate a child’s potential, have had differences of opinion, may not have been able to do our best for every child, and are sometimes unable to live up to parental expectations. But at no point are our doors shut for the parents. It is a measure of the excellent rapport we share with families that they continue to be in touch long after their children leave school, and continue to share with us their joys and sorrows and together we rejoice in having achieved our common vision of helping each child develop into a confident, self-assured individual, living life meaningfully and productively in the mainstream with support as required.
Establishing rapport with parents is hard work, often emotionally demanding, and fraught with the danger of misunderstanding. But it is and will continue to remain a very important part of our work, because only when we work in partnership with them can we translate our common vision into reality.
The author heads an alternative school in Sion, Mumbai, called Little Angels’ SAPLING. She can be reached at [email protected].