Excuse Me? A recurrent question thrown out over the years of raising our daughter has been, “what do people do who are not educated like you two, and have to raise a child with disabilities?” I find that question as off-putting as the equally frequent observation that “Your daughter is so lucky to have parents like you.” and that “There is a reason why you were given this child.”
People Mean Well: People do mean well and perhaps even believe what they are saying. But frankly I have never known how to respond to any of these comments. I am not a religious person. Nor do I believe luck has anything to do with it, or unluck. However, I do have some thoughts regarding our educational background and the special needs journey.
Background: Though my husband and I are both in “helping professions”, neither of us is trained to work with children or with special needs. When our daughter’s development seemed more delayed than her peers, it was not our observations that led us to specialists as much as friends’ feedback. At first. Most of the concepts that would be used to describe her challenges were either new to me, or existed in the periphery of my awareness. And though people assume that we had some expertise that eased the way and eased the pain, in fact, that was not true.
Attitude: What I do think each of us may have accessed from our professional trainings was “attitude”: that we had the right to ask questions; that we were not dissuaded from going elsewhere for the information if we didn’t get answers; that others should hear us and respond to us; that other professionals were our equals and therefore not gods or particularly intimidating; that other professionals can be wrong or off track; that non-professionals or para-professionals can offer some of the best guidance; that folks who know our child best, who are “hands on” provide enormous insight; and that trusting our instincts, even when “professionals” don’t agree, is the richest fount of information and direction of all.
The Empowered Parent: Parents need to feel equal to those “professionals” with whom they interact and on whom they rely. Equal as thinking individuals, who can observe their own child, ask questions, and if not satisfied with answers, go elsewhere. The empowered parent is not necessarily the most educated, in the academic sense of degree holders from recognized institutions. The empowered parent is one who values their observations, gives importance to their inquiry, views their lack of knowledge as normal and not shameful, and moves assertively to find useful pathways to aid their child.
The Answer: No, you do not have to be “educated” per se to raise a special needs child. But you do have to educate yourself, empower yourself and feel worthy of respect from any of the professionals with whom you interact. This is your child and believe me, you are the expert!
©Jill Edelman, M.S.W., L.C.S.W. 2011