Reply to: RE>Family Coping with Loss of Support and Hurtful Comments

Permission to place this mail into the Our-Kids archive given by the author, by Dick Sobsey

From: Children with Special Health Care Needs 
<> at cclink 8/4/95 1:18PM (6772 bytes: 111 ln)
To: at cclink
bcc: esiegel at NYBG
Subject: Re: Family Coping with Loss

------------------------------- Message Contents -------------------------------

Reply to: RE>Family Coping with Loss of Support and Hurtful Comments

Dear Joan:

Please excuse my rantings here. As the father of a child with Glycogen storage disease 20 years ago and the father of child with severe mental disabilities, asthma, and a list of other special need today, I've spent a lot of time thinking about your coping question. As a researcher on developmental disabilities, I am also concerned.

There are two kinds of negatives that parents have to address: The overt ones are the simple ones. There are other more covert ones that are subtle messages that often come 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 find helpful.

oo There are three strategies that parents can use when people are being negative:

1. Educate: 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, often just avoiding them is perfectly healthy and, in some cases, easy to do. Of course, there are some cases such as relatives where this is harder.

3 Fight: This should be a last resort. It takes too much energy, requires negativity, and is less likely 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).

oo Recognize that not all apparent support is helpful. Don't let anyone alienate you from your child. I need support FOR my relationship with my child, not support AWAY from him. Things like telling a parent that they people feel sorry for them, overemphasizing stress, etc. do not support parents relationships with their 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 when it is a labor of love.

oo Seek the support network that really supports the relationship with your child. Often, this means other parents of kids with special needs. Sometimes it includes the rare professional who cherishes your child.

oo Recognize the positive aspects of your child and his or her contribution to your family. Our five-year-old cannot talk, 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 ways that he has made our life better and our family stronger.

Milton Seligman who has done great research work on families wrote a personal perspective for the book Uncommon Fathers (1995) [D. Mayer (ed) Bethesda, MD: Woodbine House] . He gives this advice:

My suspicion is that the general public believes that a child with a disability creates enormous tensions within the family, eventually culminating in divorce. On the other hand, parents who speak and write about their experience with their child project the notion that a child with a disability marshals constructive forces within the family system and actually brings the family closer together. (p. 179)

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 could contribute after she was gone:

I thought that placing Cassie would be simple. I thought I could go easier on myself and, like some splendid Sisyphus, throw off the stony burden of the last nine years. I even thought I would be able to spend more quality time with my other children, working on relationships long overdue, commitments long underdone. But I see clearly now that I miss her terribly. I am also beginning to see that my children benefited from Cassie's presence, that removing Cassie didn't change behaviors or even allow for more one-on-one time because it was always there. I didn't need to separate Cassie from the family to make them better. My family didn't need to be fixed. It was never broken. (p. 88)

oo 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 prognosis. 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."

oo 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 that's okay. I've been a nurse and special educator working with handicapped children since 1986. My wife is a speech therapist. 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 to busy being parents to do all these other jobs." The first time my five month-old was in the hospital in 1970, I made the horrible mistake of going to see her wearing my nursing uniform on my break. She took one look at me and screamed and I could not come near her without her screaming again for two weeks. Her message was simple, "You're either one of them or your one of us. You can't be both." Hopefully other professionals can help my children, but we are the only parents they are ever going to get. The unique role of parents must be recognized, respected, and cultivated. Ironically, parents who are not already professionals often have to deal with even more of this. Our transdisciplinary model asks them to adopt a lot of paraprofessional roles, but we usually ask them to do this with complete disregard for the unique and most important role that they will ever play as parent. I am a great supporter of transdisciplinary teamwork, but this is a problem that we have to come to grips with. Parents need to be parents first.

Dick Sobsey
Abuse & Disability Project
6-102 Education North
University of Alberta
Edmonton, AB T6G 2G5 CANADA
Phone: 403/ 492-3755 Fax: 403/492-1318