Clinicians must recognize psychosocial needs of children who have parents with disabilities.
By Jill Diffendal

"I sometimes wonder, 'Why did it have to be me,' but really I suppose we've just got to get on with it, anyway it could have been worse."

Matthew, age 12, shared these thoughts with the journal Disability, Pregnancy and Parenting International in its column Kids' Talk. Matthew's mother sustained a spinal cord injury in a car accident when Matthew was three months old.

Matthew's 7-year-old brother, Neil, was not so optimistic: "I think it ruins her life. She can't do as many things as she could before, and I think that is sad."

Daniel Gottlieb, PhD, a family therapist and adjunct faculty in the psychology department at Hahnemann University in Philadelphia, said that children of parents with disabilities are no different than children whose families face other types of adversity, such as divorce. Gottlieb, a father with quadraplegia, is host of the public radio show "Voices in the Family" and writes a bimonthly family advice column for the Philadelphia Inquirer.

"It is the same for the child of a mixed marriage or a gay or lesbian couple," Gottlieb says. "A disability is not automatically a sentence of depression and agony; it depends on what the disability means to the person and the family."

In fact, Gottlieb asserts that children who grow up in families with well-managed adversity turn out more confident, more connected to their families and with better self-esteem. The real issue is how the family deals with the disability.

"The most important thing is keeping the lines of communication open and making the disability an open topic," explains Rhoda Olkin, PhD, a licensed psychologist and faculty member at the California School of Professional Psychology. "The children need to know they can tell the parent if they have a problem about it, and the child needs updated information based on his or her developmental level."

Olkin, a polio survivor and mother of two, is an author and staff member at Through the Looking Glass (TLG), a non-profit California-based group devoted to research, training and services for families with disabilities. She is currently conducting the first national study on parents with disabilities and their adolescent children. Based on current research, she feels that children of parents with disabilities aren't facing unique issues.

"The very things we know predict problems in children in general are the same things that predict problems in children of parents with disabilities," Olkin says. "Many of these children live in low income, single-parent, multi-stressed families. The difference is that parents with disabilities don't get asked about these other things, like violence or drug use. People assume that the disability is the problem."

Research reinforces these claims. One of the earliest studies available, "Personality, behavior, values, and family relations of children of fathers with spinal cord injury" (Buck and Hohmann, Archives of Physical Medicine and Rehabilitation, Sept. 1981), found that children of fathers with SCI were healthy and well-adjusted, with no confirmed link between the father's disability and negative behaviors or attitudes.

A Swedish study reported in Paraplegia ("Motherhood after traumatic spinal cord injury," Westgren and Levi, 1994), found that mothers didn't feel their relationships with family members differed from other families. Mothers didn't feel that their children were restrained from normal activities, had extraordinary responsibilities at home, or were ostracized by their peers. The 10 children old enough to fill out a questionnaire didn't perceive their mothers as different; six said they felt sorry for their mother's predicament; and three recalled family activities from which they had been excluded because of their mother's disability.

Gottlieb and Olkin admit that children of parents with disabilities could have some psychosocial distress. Gottlieb lists depression, secondary post-traumatic stress, attachment disorder and alienation as potential risks.

Olkin explains that one of the best things parents can do is get their child in touch with other children of parents with disabilities. Finding these children is much easier said than done, however, because there's very little available to them in the way of specialized support.

Resources for these populations acknowledge that children living in difficult family situations may manifest anger, fear, confusion, guilt, resentment, isolation, depression, aggression or substance abuse. Very few children have developed the skills to adequately cope with these issues on their own.

Psychologist Kamela Scott, PhD, wrote in Jacksonville Medicine that "physical disability of any member of a family impacts the family system to a similar extent as the impact on the patient. However, frequently the emotion sequelae of family members is not addressed... Family members experience similar feelings of anxiety, fear, depression, despair, and conflict, and yet often are left to deal with their emotions in isolation" ("The 'Psychological Emergency' of New Onset Physical Disability and Deformity," May 1998).

However, most parents with disabilities don't think their children are any different. Indeed, there are so few resources for parents with disabilities in general, it's no surprise that there are no resources for the children.

Research is no help either. Existing studies are formulated to look at the children through the parents' perspectives. But the vast majority of parents, whether disabled or not, don't understand how to read emotional signs in their children. In general, children's mental health needs in the United States go under recognized.

Also, the potential exists for parents to underreport signs of strain in their children for fear of being labeled a "bad parent." Many people with disabilities encounter strong opposition in their decision to become parents. Critics raise many questions, from whether the child will inherit the disability to whether the parent will be physically able to perform parenting tasks.

Some parents may fear, with good reason, that such interference may result in a call to social services or child welfare agencies. One parent reported on the Through the Looking Glass bulletin board that someone from the outpatient program the parent attended called social services. Although nothing came of the call, the only resource that social services offered to the parent was the possibility of respite care.

"A really key thing is alleviating isolation for families, including children," says Megan Kirshbaum, PhD, executive director of TLG. "Networking of parents with disabilities needs to come down to the local level. What really needs to take place is human contact on the local level between families."

Jill Diffendal is senior associate/online editor. She can be reached at jdiffendal@merion.com





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