Making Marriage Work With Special Needs Kids
As any parent will tell you, there are times when children are a real punch in the gut to a marriage. Lack of sleep, reduced time and opportunity for intimacy, hectic schedules and the struggle to balance family and career can eat up almost all of a couple’s available downtime.
However, parents find ways over, around and through these challenges as kids grow and develop. But what happens when that child’s potential for development and eventual independence are virtually eliminated due to special needs?
“I think what people need to know is that there is a grief that happens,” said Dr. Jayne Bellando, child psychologist at the Dennis Development Center at Arkansas Children’s Hospital in Little Rock. “You love this child and there’s all these expectations of this child being in your life, but there’s a grieving of the future that you have for them or the expectations that you have for them, and so that’s going to certainly impact how the parents are acting and how they’re responding.”
Research generally shows couples with a special needs child are more likely to divorce, but to exactly what degree is murky. Consider:
• A 2010 University of Wisconsin study showed divorce rates among parents of children with autism spectrum disorders twice that of the general population at each stage of childhood and young adulthood.
• A 2009 study of parents of children with ADHD by the University of Buffalo also showed divorce occurred at a higher rate, but only until the children were around 8, after which point the divorce rate receded to the national average.
• A Vanderbilt University study in 2007 showed divorce rates among families of children with Down syndrome were actually lower than those with children with other birth defects and families of children with no identified disability.
Statistics demonstrate the arrival of a child with special needs is by no means an automatic death sentence for a marriage, and keeping this in mind is one of the first and often most important elements of couples’ coping mechanisms.
“I don’t want (parents) to feel like they’re doomed,” Bellando said. “I think if families are able to be smart and they know this information and they’re able to be empathetic and be kind, you can absolutely get through these things.”
That said, there’s extra work that parents of special needs children must do to maintain a healthy relationship. Charlie Simpson of the Arkansas Relationship Counseling Center likens it to progressing through stages of grief.
“You have the initial shock, working with doctors and working with your spouse to make sense of things,” he said. “From shock you typically starting going to anger: ‘Why me? Why us? Why our family?’ Then you go into the bargaining where you start beating yourself up, and that leads to the depression. Finally, you get to acceptance and you’re able to come to terms with how life is going to be as you move forward.”
Of course, the real-life progression, as both Simpson and Bellando point out, is nowhere near that cleanly defined for an individual to go through, let alone a couple. Simpson said the point is not for a husband and wife to “get through” the stages at the same rate, but to support each other in the sometimes years-long individual journeys toward acceptance.
“We all grieve differently; some people turn inward and go through their grieving process while other people may need support,” Simpson said. “Oftentimes what we might do is project our beliefs onto our partner and say ‘hey, you should be grieving the way that I grieve.’ When that happens in a relationship, it causes a lot of friction. I challenge individuals to really hear their spouse and to better understand why it is they grieve the way that they do.”
Marriages come in all shapes and sizes, and no one strategy works for everyone when a child with special needs enters the picture. Here are some suggestions:
1. When it comes to feelings, don’t hide from your spouse or behind your child. Avoiding your feelings won’t make them go away, it will just slow down the journey to acceptance, thereby further eroding all other relationships.
“Some couples really hit the ground running; they just go straight to caregiving and really neglect their feelings,” Simpson said. “It’s like you lost a loved one to death and you just push your feelings to the side because you’re there to take care of everybody else. That’s really unhealthy for a couple.”
2. Date night may not look the same, but “us time” is still critical. It may seem inconceivable to pull this off, but look for ways to make time for each other. Even if you can’t go out it’s important to set aside time to spend just the two of you: talking, relaxing, enjoying a homemade dessert, or whatever else you can do at home. Date nights out are great, too.
(See Little Rock Programs Focus on Relief for Special Needs Families for info about childcare programs that can give you an opportunity for a morning or night off.)
3. Give and accept permission to take a break. Sometimes the steepest barriers are those of guilt and worry over what others might say that keep caretakers from tending to their own health.
“I often hear a client talk about, ‘If I focus on myself, that’s being selfish,’” Simpson said. “For an individual who’s in that caretaker role, just to hear somebody say it’s OK to go out and do something for themselves is really enlightening.”
4. Be prepared to step back if you need to. Age milestones can take on a whole new intensity; be prepared to experience what feels like a regression to a previous stage of anger or sadness.
“It kind of kicks you back into, ‘wow, my child should be talking now’ or ‘my child should be walking now’ or ‘my child should be going to junior high,’” Bellando said. “As a parent you have to be aware that you may be feeling great now, but when you hit that next expectation milestone, you may get some of those feelings all over again.”
5. Don’t sweat little problems, but don’t ignore simple solutions, either. While special needs couples face many day-in, day-out stresses that other families don’t have to think about, many of the best coping strategies are the same.
“I know this sounds very simplistic, but it really boils down to being kind to each other, having a sense of humor and really being articulate with your partner about how you express your feelings,” Bellando said.