A reprise of my blog on grief in special needs adoption

This week Robert and Jennifer have written so eloquently about the grief that parents of disabled kids experience. I suddenly remembered an essay I wrote about eight years ago for my Geocities page, back in the pre-Blogger, pre-360 era, and I found it and reread it this morning. I thought it might be of interest to folks reflecting on this topic of grief and disability:

I am an occupational therapist and adoptive mother to 10 kids, most of whom have significant physical and psychological disabilities. Over the years we have dealt with cerebral palsy, spina bifida, traumatic brain injury, dystonia, diastrophic dysplasia, Tourette syndrome, anorexia, ADHD, schizophrenia, attachment disorder, post traumatic stress disorder, depression, learning disabilities, and mental retardation.

Yes, I said "disabilities." I guess the politically correct terms are "differently abled," "physically or mentally challenged," etc. But why sugar-coat the problems? Why deny the difficulties imposed by a physical or mental limitation? Why minimize a devastating loss of ability into little more than an inconvenience? Why not acknowledge the sense of loss and grief which accompany disability?

Many people have particular difficulty understanding that an adoptive parent could have such feelings of loss and grief. "After all, you knew Johnny had problems when you adopted him, didn't you?" But adoptive parents, just like biological parents, go into parenting with certain dreams for their child and their family. After so many years of very draining parenting, it is somewhat difficult to remember what my dreams were, but I vaguely recall some of them. I dreamed of a close relationship with my children. I dreamed of sharing my love of learning, reading, and other cultures with them. I dreamed of travelling with my children, hiking in the mountains, exploring other countries.

Over the years I have had to bury many of those dreams. Some of my children, because of their attachment disorder, have totally rejected me. Dreams of having deep conversations about literature or politics have faded as I listen to discussions about football and DragonBall Z. Knowledge of geography is limited to being able to name those cities which have professional basketball or football teams. Exploring is limited by both physical barriers and lack of interest.

Although over time the anguish gives way to a dull ache, I have found that as my children have become teens and young adults, the sense of grief sometimes washes over me like the ebb and flow of the ocean. Most of the time I hardly think of their disabilities; they have become as routine as their eye color. But then reality crashes over me. Perhaps it's a milestone missed, for example, as a friend gets his drivers' license, reminding us that Johnny won't ever get one. Perhaps it's seeing Johnny sitting on the couch next to a guest about the same age and realizing that there is a huge gulf between the two of them in terms of maturity, interests, abilities. Perhaps it's watching a mother and her child at the store, hand in hand, or a baby secure in his mother's arms, and grieving for the lost soul who never knew that sort of love and nurturing until it was too late and so rejects it. Or, the most difficult, perhaps it is watching your child change for the worse over time, for example, seeing a bright, charming child become a slow, flat schizophrenic teen.

And the parent's grief is exacerbated when the child himself goes through a period of grieving. When my son who is disabled because of severe physical abuse realized at the age of 5 or 6 that he had once been normal, he went through a period of profound grief.

So I think it's essential to acknowledge this sense of loss and grief among adoptive parents, and that these parents receive support, rather than judgment and criticism. A parent whose most stressful medical crisis with her child was getting stitches or having ear tubes cannot imagine a life with braces, wheelchairs, body casts, multiple surgeries, catherization, etc. A parent whose biggest behavioral challenge is getting his child to stop name-calling or to pick up their dirty socks cannot imagine life with a child who rages for hours, threatens to burn down the house, assaults others, verbally and physically abuses the parent. Yes, we adoptive parents chose this journey, but the course was unmarked and uncharted. When the road is full of potholes, or the night is dark, or the storms rage, it would help to have a friend walking along with us, with an arm around our shoulder and a word of comfort.