Family
Perspectives on Parenting©
by Nancy Lambert Davenport


Nancy Davenport's Column:
For Richardson News 10-03-99
Copyright Nancy Lambert Davenport 1999


"Parents Helping Other Parents Pass Along Knowledge"


I sat at a round table of amazing parents. All of them had at least one child born with disabilities. Next to me was an "experienced mom." In other words her child was as old as mine. Across from me was a couple whose child with disabilities is six years old. They recently lost a baby who went almost to full term. The wife could be depended on that morning to crack a joke when the discussion got too heavy. Down the table was another mom who has two-year-old twins with Down syndrome. There was couple whose child with disabilities is only 18 months old, a mom with a 9 years old, and another mom with a one-year old who has already had several surgeries.

They had all given up their Saturday mornings to attend a training session to be qualified to visit with parents of newborns by phone, in the hospital, or at newborn's home. These parents with whom they visit would be special because they would have just been told their new baby had Down syndrome.

We all concluded that there was no good way of hearing "The News", and that most of us severed relationships with whomever was the bearer of that news to us. It's the "kill the messenger" mentality. We all know that is irrational, but way down deep we still must think it was that messenger's fault. Happily at least being a messenger won't be in the job description of the people of this table.

Instead they had volunteered to visit with other parents after they have been told so those parents can learn from them, be given realistic first-hand information, and have someone listen to them who has a sympathetic ear.

One of the best bits of information handed out that day was about grieving. We were an educated bunch of people so most of us knew the major steps of grieving--from shock and disbelief to resignation to having a baby with disabilities. What was new though was that families with children with disabilities also experience re-grieving. Grief is not a one shot deal. About the time a parent adjusts finally to having a baby with Down syndrome, they hit pre-school and are slapped with a feeling of grief because their child doesn't measure up to the others. It might hit again when it's time for t-ball or soccer, and again with first grade, and so on. It seems there is no escaping those pangs of grief. The parents also learned that it is not bad, not weird, and in fact, pretty normal.

Everyone learned that many families are also in denial and that denial is not necessarily bad. It gives people time to build their resources so they can cope in the long run. We learned that many people cope by setting up their initial defenses to protect themselves. That defense might be anger, fear, sadness, anxiety, or some other expression. These defenses must be honored and allowed expression. Problems occur, it was mentioned, when spouses do not respect and acknowledge each other's defenses. One spouse telling the other spouse to " just get over it" is going to spell trouble. We were duly warned.

I have a feeling most of the parents that day, like me, had to reexamine their own feelings about their children and their own attitudes about adjustments to life with them. I think though that the main reason those parents were there was to have an opportunity to pass on to others that "It's going to be all right. Life with this child is going to be fine. You'll make it. If I can, you can, and if necessary I'll walk a while on the path with you."


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Nancy Lambert Davenport
EMAIL: nancdave@swbell.net
URL: http://www.nancyldavenport.com