As the father of a child with Glycogen Storage Disease 20 years ago and the father of a child with severe mental disabilities, asthma, and a list of other special needs today, I've spent a lot of time thinking about how I've coped with the reactions of others, and I thought that some of my ponderings might be of value to you.
There are two kinds of negatives that parents have to address: The overt ones are the simple ones. There are other more covert ones, though, that are the subtle messages often received from the people who we love and trust or the professionals who are supposed to be helping us. There are no easy answers, but here are some things I found helpful in coping with 'problem statements'.
There are three strategies that helped me when people were being negative:
1. Education: Tell people the truth. Let them know that they are not being helpful and more importantly, let them know what would be more helpful.
2. Escape and avoidance: If you can't change peoples' minds, try avoiding them. Perfectly healthy and, in some cases, easy to do.
3. Fight: This should be a last resort. It takes too much energy, requires negativity, and is less likely to be successful than education or avoidance. However, sometimes there is little choice...(e.g., your child's school is giving you a hard time and there are no good alternatives).
Recognize that not all apparent support is helpful. Don't let anyone alienate you from your child. I needed support FOR my relationship with my child, not support AWAY from him. Things like telling me that people felt sorry for me, overemphasizing stress, etc. did not support me in my relationship with my children.
Many parents are told implicitly or even explicitly, "Don't get too attached to this child or it will break your heart." This is a mistake. It is better to allow some heartbreak than to turn a heart to stone. Attachment minimizes stress. Parents of kids with intensive needs can handle a lot of demands that they see as labors of love.
Seek the network that really supports the relationship you have with your child. Often, this means other parents of kids with special needs. Sometimes it may even include a professional who cherishes your child.
Recognize the positive aspects of your child and his or her contribution to your family. Our five-year-old cannot talk and his motor skills are at about a one year level. There is a long list of things that he can't do. We've spent some rough times, but everyone in our family can list many ways that he has made our life better and our family stronger.
Milton Seligman who has done great research on families wrote a personal perspective for the book Uncommon Fathers (1995) [D. Mayer (ed) Bethesda, MD: Woodbine House] . He says something like
'My suspicion is that the general public believes that a child with a disability creates enormous tensions within the family, and that that tension eventually culminates in divorce. What often happens, though, is that parents speak and write about how their experiences with their child marshal constructive forces within the family system and actually bring the family closer together.'
One of the most poignant essays in the book is David Seerman's "Loneliness of a long distance daddy." Seerman writes about how he and his family decided to place their daughter Cassie outside their home, thinking the family would be better off... and only realized what she had contributed after she was gone. He concludes the poignant narrative of his loss with these words. "My family didn't need to be fixed. It was never broken."
Never let anyone rob you of hope. Research shows that professional caregivers consistently underestimate the quality of life of people with disabilities and often provide overly negative prognoses. They are too worried about giving people "false hope" and so they casually give them a dose of "false despair." Parents need to know that hope doesn't always mean "a cure."
Sometimes it is more important to be a parent than a paraprofessional. Parents are expected to be physical therapists, nurses, behavior modifiers, communication therapists and so on. Sometimes paid professionals tell us, "you don't need us; you know how to do all this stuff." Sometimes we have to tell them, "I'm sorry but we're too busy being parents to do all these other jobs."
The unique role of parents must be recognized, respected, and cultivated. Parents need to be parents first, and being good parents is the most important job in the world...
Fleitas, Ed.D., R.N.
Last updated: November 14, 2004