Sandy was resentful and emotionally drained.
Ron had completely withdrawn and behaved as though his withdrawal wasn't an issue.
Typical marriage? Actually, yes, says author Laura Marshak in her book Married with Special Needs Children
(Basic Books). That’s why couples who can navigate in the special needs realm together are, well, special. When the fairy tale feelings of love eventually give way to imbalances, finances, chores, careers, expectations and the unexpected — such as a special needs child — marriage can get downright impossible. A special needs child magnifies the added duties that child rearing brings with increased worry, added appointments, emotional evaluations, therapy sessions, CSEs (case study evaluations), and IEPs (individual education plans).
Because of these added stresses, marriage for parents with a special needs child requires more fine tuning to stay successful. Here, experts offer their tips on how to stay connected, supportive and in love while raising a child with a disability.
One common mistake women make is in defining who they are based on their child’s disability, says Fran Walfish, a family psychotherapist and author. She has appeared on NBC Nightly News with Brian Williams
, on Dr. Phil
, and is also a contributor to several national magazines. The everyday struggles mothers face with a special needs child from arranging therapy to transportation issues can become all consuming. Moms can become resentful and emotionally drained, Walfish says. And men, feeling the burden of not being able to “fix” their child, may withdraw from or even deny there’s an issue. “This is very complicated stuff,” Walfish says. “Couples that collapse are the ones who hold their feelings inside. There needs to be a checking-in with each other on a daily basis for even 15 - 20 minutes of uninterrupted connection. This means that two willing partners shut off their cell phones and computers and commit to talking about the day and its stresses.” These “check-ins” are meant to offer each spouse the opportunity to be heard fully and completely, without one spouse preoccupied online or flipping through television channels. The goal is to learn about the other spouse’s day, share a smile, offer support and most importantly, feel heard.
He Said, She Said
Walfish says that while it is often the case that one parent works to financially support the family, the other carries the burden of managing the child(ren) 24/7. This imbalance often brings added stress to the relationships. With special needs, one common problem is that one spouse may have to quit work to “take over” therapy issues. This sometimes includes numerous therapy sessions, testing, school meetings, learning the rights and laws for your child and creating real world situations in which therapy can be practiced. It can be exhausting, emotional and lonely. On the other hand, the spouse that continues to support the family financially has the added pressure of becoming the sole provider in a time of job insecurity. Being invaluable all day to a boss and then coming home to a busy house can also be overwhelming. Remember what the other spouse is doing to provide for the family, be it financially or emotionally.
Elaine Hall, author of Now I See the Moon: A Mother, a Son, and the Miracle of Autism
(Harper) suggests if spouses are not seeing eye to eye in regard to therapy, it might be best to have third party assistance. Walfish agrees. She suggests looking to your school district for help, as there are often ways to receive free services to ease the financial burden. Monthly meetings can be placed on a child’s IEP
so discussions with all therapists can take place at once. The therapists can provide hard-to-hear information and explain things in a detached and clinical format for both parents present. If you and your spouse have different opinions on how to best proceed, therapists have the experience to offer pros and cons of varying options, and they can help guide you both to a workable solution. This way, everybody can be on the same page going forward.
Date Night Needed
Walfish advises couples to schedule weekly date nights. The objective is to add more glue to the bricks and mortar laid in the foundation of your relationship. Date nights should be fun and stress-free, with only positive discussion of kid issues. Hall reinforces the idea that the concept of date night is to strengthen intimacy in your marriage, so when times do get tough, you have great moments to fall back on. While the disability of your child or financial restrictions may make it seem as if a weekly date is impossible, keep trying for it. Aim for one hour a week where you make marriage a priority. Can you put on a favorite movie for your kids and sit on the back deck? Feed the kids dinner early and enjoy an adult dinner later? If you don’t live near family, is there a friend willing to come over? Lingering over dinner may take too much time and be too expensive, but taking walks and holding hands or playing card games are free!
Hall also encourages spouses to show gratitude towards each other to create a loving, enriching environment. Look around and realize all your partner does to support you. Maybe it’s picking up milk on the way home from work, preparing a home-cooked meal or putting gas in the car. All of these things are easy to take for granted, but are helpful. If you think something nice of your spouse, be sure to share it — the feeling of love will follow, Walfish says.
Though marriage isn’t always easy or fun, there are proactive steps that can be taken to avoid major break downs. Things will get better, the hard work does pay off, and working as a team will certainly help the family as a whole.