In the months following her daughter Amy’s diagnosis of a rare muscle disorder, Roberta Hansen didn’t allow herself to mourn the news. In fact, she didn’t allow herself to take a break at all.
“I got angry and then the anger turned into, ‘OK, now let’s fix it.’ I tried taking Amy to all kinds of therapies and was out of the house several days a week” while caring for three other children under age 6, she recalls.
Her body couldn’t cope with the pace: it took three months just to shake a cold. Her friends finally confronted her about her burnout, offered to watch her children and encouraged her to take a break.
Two decades later, Hansen shares her wisdom as a parent liaison for Child and Family Connections. She tells parents of children with special needs that failing to take breaks can jeopardize personal health, relationships and even the ability to effectively parent.
“Every parent needs time away from their kids,” she says. “They need to think like an adult, have a conversation that doesn’t have the words ‘pee pee’ in it. That’s even more important if you have a child with a disability.”
From researching their child’s disability to scheduling therapy appointments, from filing health insurance claims to negotiating appropriate school settings, parents often spend every free moment managing their child’s care. In the process, they often forget themselves, says Tammy Besser, the Eva Cooper disability coordinator for Jewish Community Family Services.
For many people, finding time to maintain their own physical and mental health, social networks-and especially their marriage-feels impossible.
“Your children have to come first,” says Margaret Martin, a mom of two children with autism. “Whatever energy that’s leftover you have to suck out.”
Whether it’s rediscovering a favorite hobby to arranging for regular respite care, below are ways parents can cope more effectively with the long road of caring for their special child.
Begin with yourself
• Allow time to grieve the future that may never be and know that everyone mourns differently, says mom and Evanston therapist Ann Tharayil. “Some parents are angry, some turn to information for comfort, some feel guilt or shame, others reject labels or don’t want to believe it,” she says. The first two or three years after a diagnosis can be the most difficult, so give it time.
Martin remembers becoming very emotional as she and her husband watched a video of her infant son before his autism diagnosis. “At that time, our life was entirely different. We didn’t think about the word autism. We just had this little baby and look how cute he was… The feelings just overwhelmed us.”
•Tell yourself: “No regrets. I did the best I could with the knowledge and resources I had,” says Hansen. This approach has kept Martin’s family from dwelling too much on what could or should have been. “We’ve always looked forward and not backwards,” she says.
• Describe yourself without using the word ‘mom’ or ‘dad,’ Hansen suggests. Think about who you were before becoming a parent and what brought you joy. Then, find ways to do it again. She says one mom who loved to run adapted her stroller so she could jog with a child with a feeding tube.
• Find “pockets of peace,” Hansen says, because it’s much harder to find longer breaks. Grab a crossword, for example, or hop on the treadmill for 15 minutes. Even going to the grocery store alone once a week can be a treat. Besser gives the example of a mom who loved to take bubble baths, so she occasionally left work 20 minutes early to bathe at home before picking up her kids from day care.
Connect with your spouse
• People process news of their child’s disability differently, which means couples rarely react the same way. “You can imagine how painful it would be to feel a huge sense of loss that your child will never be the child you dreamed of, while your partner is dismissing the diagnosis and denying anything is wrong,” Tharayil says.
Be patient. Give your spouse plenty of space and accept that reactions will be different. Also, Tharayil says, “couples counseling can create a safe place to sort out feelings and try to agree on steps to take to support each other and your child.”
• Educate yourselves about the disability together, she says. Develop a family strategy for approaching the child’s care and development and stick to it.
• Make sure both partners are on the same page about the rest of family life, too. Before the Martins had children, they envisioned taking a family cruise each year. But with two unpredictable, nonverbal children, they have opted for more manageable overnight trips to Six Flags Great America.
• Accept that maintaining a healthy marriage will require lots of work, says Martin. “It is very difficult to be married. A lot of our focus goes on our kids and not a lot on each other. We have to put forth an effort to do things and plan way ahead of time.” Now that their children are in school, the couple often connects over lunch. Sometimes they just run errands together.
Hansen suggests carving out time on the weekends-even if it doesn’t always happen-“just to talk and make sure you’re on the same page. Otherwise, you’re just asking for distance.”
Build your support network
• Everyone interviewed for this story says families who cope best with their child’s disability have created a strong network of loved ones. But sometimes, family members refuse to acknowledge a disability or are unwilling to help; acquaintances may ask hurtful questions or pass judgment; strangers may stare. Home, says Besser, often becomes a sanctuary for families; connecting with others feels like more trouble than it’s worth.
Birthday parties or even family gatherings create more stress than pleasure for the Martins. “We have to be on alert, on guard. If our kids aren’t in their own environment, we don’t know how they’ll behave,” she says. “For the most part, we do kind of isolate ourselves.”
The Martins try to host events if at all possible. If they do go out to a party, she says, they make sure to come prepared with plenty of surprises to keep the kids occupied. Her advice? “Be good planners and know what to expect, but expect the unexpected!”
• Prioritize time spent with family members and friends who “get it.” These are the people who love and accept your children as they are and want to learn how to care for them. In other words, says Besser, find loved ones who will say, ” ‘Look, we know your child’s quirky, but you’re always welcome at our house.’ This makes a huge difference in how well a family copes.”
• Attend support groups to commiserate, share coping strategies and learn new information. Hansen says her personal need for support groups waxed and waned throughout the years, but she always went if she needed to bounce ideas around or simply be reminded that she wasn’t alone.
• Stay connected with families who don’t have a child with special needs. There will come a time, Hansen says, when parents need to remember what it means to be typical. She gives the example of wanting to host a birthday party for her 7-year-old daughter, but forgot what typical girls do. So, she called a friend who talked her through it, from fingernail polish to Disney music.
Think creatively about child care
The key to many of these suggestions is having someone else care for your child, whether it’s a family member, neighborhood babysitter or paid respite worker. Finding someone trustworthy and competent might seem like a challenge, but it is essential for the family’s well-being.
• Don’t give up on respite care, even if finding an appropriate fit and availability takes a long time. Martin says even though she had one negative experience with a respite care agency, “I’m all for respite. It was wonderful.” Sometimes, she would simply go to her bedroom, close the door and watch a movie while a respite worker cared for the kids.
• Train several babysitters if possible, so that you don’t become reliant on just one. One of Martin’s favorite babysitters leaves for college soon, but she has already trained other sitters who are prepared to take over. It also helps to have a friend or family member who can be an emergency caregiver should other plans fall through.
• Think creatively about the adults in your life and how they might help. For example, Hansen says, one woman trained a friend and fellow YMCA member to work with her son while she exercised. Other mothers in Hansen’s support group agreed to exchange babysitting time so they could renew a hobby.
• Finding a preschool that is sensitive to all children is a huge step toward a successful school experience, says Tharayil. It can also give parents a much needed break.
•Family Resource Center on Disabilities, www.frcd.org
•Early Intervention Clearinghouse,
•Jewish Community Family Services offers Glick Family Camp twice a year, providing a worker for each family, activities for children and time alone for parents, www.jcfs.org
•For more resources, check online at ChicagoParent.com.
Lisa Applegate is a Chicago mom and freelance writer.