Love, marriage and special needs

 
 

By Robyn Monaghan

Contributor
 
Staying together through special needs

1. Protect your marriage.

One of the reasons marriages are more prone to divorce is that care for the child often overrides everything else in the family.

2. Embrace your differences.

Differences are amplified when disability enters the family. Couples differ in emotional reactions, future expectations, discipline and educational and medical treatments. Couples should ask: "What is good about the fact that my partner has a different point of view on this?"

3. Take care of yourself.

Parents need to learn that they will be no good for their children, or have anything to give to their marriages, if they do not also protect some time for themselves.

4. Become a team.

Couples often divide responsibilities in a way that is practical in the short run but can cause problems longer term. Becoming a team also requires making space for genuine co-parenting while giving up some control.

5. Protect romance and sexual intimacy.

Loss of romance and sexual intimacy is one of the many problems amplified in couples raising children with disabilities. Many disorders result in sleep problems and increase the likelihood that children sleep with their parents or a couple is too exhausted to have the energy for sex.

6. Practice forgiveness and realistic expectations.

There is a tendency to form unrealistic expectations of a partner simply because the pressures can be so great. Because resentments then build easily, it is important for couples to practice forgiveness when appropriate.

Source: Married With Special Needs Children, Laura Marshak, Ph.D., professor of counseling at Indiana University of Pennsylvania and a psychologist at North Hills Psychological Services in Pittsburgh, where she works with parents of children with disabilities.

It was Mother's Day and family law attorney Ana Marcyan was folding laundry in her Clarendon Hills home.

"Baron's on the roof," she heard a neighbor call outside.

After a nightmarish afternoon with what looked like a SWAT team of rescue workers trying to lure her 6-year-old son with autism safely from the shingles, Ana's husband came home with their other two children.

"Why weren't you watching him?" she remembers Carl Marcyan asking.

A series of similar stories about 12 years ago landed the Marcyans in a court-mandated divorce mediator's office in DuPage County.

Instead of saying "You're right, Ana," as she expected, the counselor pointed out that there were no drugs, alcohol, gambling or extramarital relationships muddling her marriage.

What was coming between them was the sheer fatigue of caring for a low-functioning son with autism who had a penchant for stripping off his clothes, slipping out a window and following the white lines down the street.

"That's when I realized something I'd heard before-that love is a decision," she says. "We decided to keep loving each other."

The Marcyan divorce was off.

Ironically, Baron's dad is now a family law attorney who specializes in divorce between parents of children with special needs.

After the diagnosis

Until recently, conventional wisdom has pegged the divorce rate in families with autism at around 80 percent. But new research is debunking the myth that relationships for parents of children with disabilities are statistically doomed.

A 2010 study by researcher Brian Freedman, clinical director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, found that children with autism live in homes with both parents 64 percent of the time, compared with children in families without autism at 65 percent of the time.

The new findings may assuage a little bit of the pressure that plagues parents of children with special needs.

About a quarter of Buffalo Grove therapist Amy Bash's practice is working with parents of special needs children. A mother of a child with special needs herself, Bash says the most common issue that brings parents into counseling is grief.

"Special needs parents face the complicated, consuming, frightening and challenging task of raising the child they have, while letting go of the child they dreamed of," she says.

Grief in the gender gap

What can rip vows asunder is the thorny reality that husbands and wives grieve in different ways.

Women are socialized to talk about their feelings, while men often believe they should be stoic in order to be supportive of their wives, Bash explains. Mothers will take on the role of seeking help and therapies, meeting with school staff and health professionals, exploring research, and providing the special care required. Moms tell Bash about their feelings of isolation and their shortage of time to take care of themselves.

Ana Marcyan tells of her loneliness at home with Baron as Carl took Baron's siblings to weekend soccer matches and movies.

"It was impossible to get a babysitter," she says.

Men, Bash finds, get "lost in their role when they can't be the fixers," she says. It is the father who is most likely to retreat to the safety and consistency of his work. Dads, like Carl Marcyan, say they rarely get a break if they go from work to home, where child care and chores await.

"It got to the point where I was actually glad Monday morning was coming because the stress at home was so intense," he says.

Bash also says fathers feel extra pressure to make enough money to pay for therapies and medical supplies.

Emotionally enmeshed

Laura Marshak is the author of Married With Special Needs Children, a book detailing the romantic pitfalls of parenting children with disabilities. She sees a lot of parents who love too much-but not each other.

"The quality of the emotional relationship between husband and wife has an impact on closeness with a child," she says. "If unhappy, a parent may turn more to a child."

It's a recurring marriage buster both Marcyan and Bash see when they work with families. The "enmeshed" parent may become overprotective, over-involved and overly controlling.

At the other end of the spectrum is another homewrecker familiar to both Marshak and Marcyan. It's the parent who takes the "head-in-the-sand approach" by minimizing the child's disability, rejecting all diagnoses and insisting their child simply will grow out of the problem.

For better rather

than worse

Where can couples turn to keep from winding up in Marcyan's office negotiating a visitation schedule? Social support with friends and family, along with advocacy and support groups, is key, Bash says.

A good way for couples to support each other is to trade off parenting responsibility by swapping time when one is "on" for parenting. But carving out time together as a couple is critical, too. Finding respite services if family or friends are not available is a must.

"If time is not set aside, exhaustion is the result and the sex life and the emotional intimacy is diminished," Bash says.

But the absolute best predictor of successful marriages is the ability to resolve conflict and develop resiliency. Communication and "fair fighting" skills are key in any marriage. Resentments develop when parents don't stand up for their personal needs.

Bash helps her clients realize they may not have control over the challenges that life presents, but they do have control over what they think about the events.

"I encourage clients to do what they need to do, but surrender the control of how it is 'supposed' to happen," she says.

In the Marcyan household, where both parents are divorce lawyers, "nobody is afraid of the D-word," Carl Marcyan says.

Yet he and Ana stepped back off the ledge when they realized in the counselor's office that day that theirs was a manageable problem. The mediator told them to go across the street to the bar and work things out.

"That's when we came to the conclusion that for better or worse really means for better or worse," Ana says.

Staying together through special needs

1. Protect your marriage.

One of the reasons marriages are more prone to divorce is that care for the child often overrides everything else in the family.

2. Embrace your differences.

Differences are amplified when disability enters the family. Couples differ in emotional reactions, future expectations, discipline and educational and medical treatments. Couples should ask: "What is good about the fact that my partner has a different point of view on this?"

3. Take care of yourself.

Parents need to learn that they will be no good for their children, or have anything to give to their marriages, if they do not also protect some time for themselves.

4. Become a team.

Couples often divide responsibilities in a way that is practical in the short run but can cause problems longer term. Becoming a team also requires making space for genuine co-parenting while giving up some control.

5. Protect romance and sexual intimacy.

Loss of romance and sexual intimacy is one of the many problems amplified in couples raising children with disabilities. Many disorders result in sleep problems and increase the likelihood that children sleep with their parents or a couple is too exhausted to have the energy for sex.

6. Practice forgiveness and realistic expectations.

There is a tendency to form unrealistic expectations of a partner simply because the pressures can be so great. Because resentments then build easily, it is important for couples to practice forgiveness when appropriate.

Source: Married With Special Needs Children, Laura Marshak, Ph.D., professor of counseling at Indiana University of Pennsylvania and a psychologist at North Hills Psychological Services in Pittsburgh, where she works with parents of children with disabilities.

 
 







 
 
 
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