Moms who have children with special needs often neglect themselves during their consuming quest to help their kids. Here, they share ways they’ve discovered to take care of themselves, too. Kristina Chew teaches with her cell phone on. More than once over the years it’s flashed in the middle of a lecture with the number of her son’s school, prompting her to pack her things and rush to her car to pick up Charlie, now 10, who was diagnosed with autism at age 2. Charlie’s bad days have weighed heavily on Kristina, a classics professor in Jersey City, NJ. She would often leave her office early to drop off a prescription or rush to school because Charlie was banging his head on the floor in frustration. Still, she considers herself fortunate: “I’ve been lucky. Because I’m a professor, I have a flexible schedule and have been able to get home in time to pick him up from school. But it can still be very stressful to make it all work.” Between her full-time job and her full-time role as Charlie’s mom and advocate, she rarely finds time for herself, though she does try. “I get in moments for myself throughout the day, small and fleeting,” says Kristina, who started a blog in 2005 to write about her experiences with her son and about autism in general and to connect with other moms. The number of working moms raising kids who have special needs is eye-opening. Nearly a quarter of a million children under age 3 have a developmental delay and difficulty moving their arms or legs or both, according to recent U.S. Census figures. More than 400,000 children who are 3 to 5 years old have a developmental delay and are challenged when walking, running or playing. And among those ages 6 to 24, more than eight million have a disability. All told, about 9 percent of employees care for a child with a disability. These parents juggle work and family along with doctor, therapist and specialist appointments—not to mention handling the unexpected, like seizures and medical emergencies, says Nadine Vogel, president of Springboard Consulting, a Mendham, NJ, group that works with companies to support employees who have disabilities or are raising a child with special needs. “It’s stressful to raise a child with a disability,” says Jonathan Kaufman, president of DisabilityWorks, a New York City consulting firm. That’s why it’s crucial these moms learn to care for themselves as well as they’ve learned to care for their children. Ignoring personal needs can result in even more trips to the doctor’s office, as moms face exhaustion, depression and a host of ailments. In fact, taking care of themselves and combating feelings of isolation are the primary challenges faced by the more than 50 million family caregivers of those with disabilities, the chronically ill and the elderly in this country, according to the National Family Caregivers Association. We asked working moms of children with special needs to share their coping strategies. They offer a gentle reminder that sometimes the best thing you can do for your child is to do for yourself.

Forgiving Yourself Mom: Nancy Thompson (pseudonym)

Child: David, 3, who has autism spectrum disorder 

“Me time”: A day at the spa and lunch with a friend Self-doubt has plagued Nancy Thompson ever since her son was diagnosed last year with autism spectrum disorder, officially called PPD-NOS (pervasive developmental dis-order not otherwise specified). “I thought I did everything right. I was so careful during my pregnancy,” Nancy says. “But part of me will always believe something I did triggered this.” People raising disabled children can have extreme feelings of guilt, says Kaufman, adding, “They’re constantly asking themselves, ‘What did I do wrong?’” They often neglect themselves physically or emotionally, which can have serious consequences. Divorce is more likely in couples raising a child with a disability, and as Kaufman notes, they wrestle with emotional anguish. Because the guilt has been hard for Nancy to shake, she’s plunged her energy into juggling a demanding career as a corporate executive with her son’s extensive care. In addition to David’s preschool, Nancy coordinates four kinds of therapy for him, about 25 hours per week. Her husband doesn’t participate in this aspect of their son’s care. “My skill set is better suited to this than his,” she says. She’s kept her son’s diagnosis largely a secret because “I don’t want David to be treated differently. I told only immediate family and my closest friends. I didn’t want parents at school to worry, ‘Will my child catch this?’ I want my son to feel included.” Nancy is starting to realize, however, that it can’t be all about doing for David. “On my birthday this year, I booked a day at a spa and had lunch with a friend,” she says. “That’s something I haven’t done since my son was born.” She’s also starting to take pleasure in small things. “Half an hour with a cup of tea while watching the news or forty-five minutes of peace and quiet in the morning before David wakes up can keep me going, help me recharge my batteries,” she says. “I still have guilt about what I did wrong, but I’m starting to shed some of the guilt about taking time for myself.” Getting past the self-blame is crucial to well-being, says Kaufman. It’s about shifting one’s perceptions and expectations. “Children with special needs may develop at a different pace,” he says. “But this isn’t a race, and you don’t need to come in first.” Instead of focusing on what your child can’t do, take pride in positive attributes and realize he will bloom in his own time, he adds. Kaufman, who has cerebral palsy, loves the book Leo the Late Bloomer, by Robert Kraus: “This story about a young lion who can’t do things as quickly as the other cubs often helps people come up with a new definition of their child’s success.”

Mom’s Night Out Mom: Denise Brodey

Children: Emily, 11; Toby, 9, who has sensory processing disorder and depression

“Me time”: Having drinks with a friend; business travel While coming to terms with your child’s special needs—and talents—you must block off chunks of time that allow you to recharge, says Denise Brodey, author of The Elephant in the Playroom, which includes candid conversations with parents about the highs and lows of raising kids with disabilities. But squeezing in a little “me time” requires a strategy. Denise recommends scheduling time for yourself the way you would a doctor’s appointment—and guarding that appointment with yourself. “It’s not that everyone has that spare hour lying around,” she says. “But that’s where the resourcefulness comes into play.” Realizing the need for “me time,” Denise says, “usually comes out of massively chaotic weeks, where moms are just so strung out that someone says, ‘You’ve got to take a break because you’re not doing anything well.’” Indeed, she adds, realizing you need to make time for yourself “often comes from a breakdown. I don’t think anyone is very good at taking care of themselves, or if they are, they feel guilty about it.” The key, Denise says, is to plan ahead: “It won’t happen unless you make it a point of supreme importance.” The first step is to be easy on yourself. “Me time” doesn’t have to be a huge commitment. “If you join a book club and you make it there two out of four times, that’s okay.” Second, Denise stresses that while it’s important to have someone to talk to about your role as a mom of a child with challenges, it’s just as important to have a chance to talk about other things. “I don’t think your whole book club wants to hear about your child’s special needs. And that can be a refreshing thing.” Now that her kids are a little older, Denise occasionally meets a friend for a drink after work. “I make it home by bedtime so I don’t feel so bad.” And then there’s another bit of “me time” known as business travel. “The sneaky truth is that it’s like a night out,” she says. “I savor those moments when I sit at a bar reading my book with the Mets game on.”  

Connecting with Others Mom: Trudy Marsh Holmes

Children: Heather, 34; Nicole, 30; Lauren, 23, who has autism spectrum disorder and epilepsy

“Me time”: Volunteering and being a mentor parent For help navigating the often confusing world of disability resources, health insurance and medical experts, parents can turn to groups like Easter Seals and Special Needs Advocate for Parents (SNAP). In fact, SNAP was born in 1993 from Nadine Vogel’s frustration when she couldn’t find help for herself and her then 2-year-old daughter, Gretchen, who has an undiagnosed neuromuscular disorder. SNAP’s mission is to help parents find what they need from the beginning—whether it’s a doctor for a newly diagnosed child, specially designed orthotics or a support group. Parents who understand what you’re going through can provide expert referrals and advice, as well as offer a sympathetic ear. When Trudy Marsh Holmes’s youngest daughter, Lauren, began having seizures at age 3 months, Trudy called a local epilepsy group, hoping to talk to someone who had been through it—only to be turned away. “They said, ‘Oh, we don’t have anyone for you,’” says Trudy, whose daughter, now 23, had as many as 30 seizures a day as a baby. “I thought, I am alone. I really am the only one. I was devastated.” A year later, Trudy discovered Parents Helping Parents, a Bay Area–based parent-matching group. From the start, says Trudy, her mentor made her feel supported. “There’s a comfort in having someone who knows where you’ve been and where you’re going,” she says. “You know that if she can do it, you can do it.” Because of Lauren’s condition, Trudy often found herself on alert 24/7: Her daughter didn’t sleep well and didn’t nap. “I’d try to carve out moments on the phone with friends and mentors. Many of the respite hours were spent at the marriage counselor or therapist, trying to keep ‘me’ together during many phases of crisis.” Parents caring for a child with special needs benefit from finding someone they can talk to who “gets it,” says Kathy Brill, who serves on the board of Parent to Parent–USA, which connects new parents of children who have special needs with trained mentor parents in similar situations: “When you become the parent of a child with special needs, you discover the grandparents don’t understand, your neighbors don’t understand, even your friendships change. But someone who was a total stranger becomes your life link.” Through parent-matching groups, moms can meet mentor parents who can show them the ropes. “Mentor parents will always be a part of my family’s life,” Kathy says. Once you connect with the right person or group, you can share information, support, strategies—even a laugh or two, says June Ganley, a mother of two in San Jose, CA. Her eldest daughter, Katie, began suffering seizures when she was 6 months old. June contacted Parents Helping Parents and met Trudy, who became her mentor. The two are still friends more than 15 years later. “We talk about what to do when people are staring at your daughter in public,” says June. “We talk about the depth of our grief, and we spout off. We also share a dark humor that other people don’t get.” It’s all about understanding, adds Trudy. “You have to have some comic relief, and only another parent of a child with special needs can share that with you. There are times when we look at each other and just start laughing—and that’s so necessary for survival.”

Nurturing Your Marriage Mom: Laura E. Marshak

Children: Three sons, ages 18 to 22, with a range of disorders 

“Me time”: Making stained-glass windows

While raising a child with special needs can be a big challenge, “there’s no reason it has to destroy a marriage,” says Laura E. Marshak, coauthor with Fran Pollock Prezant of Married with Special-Needs Children: A Couples’ Guide to Keeping Connected. “There are many couples who are raising several children with disabilities and medical disorders who have thriving marriages.” The key is how a couple handles the stress and disagreements over care, she says. The first step is to make a decision to protect the marriage, and then to learn how to respect and compromise with a partner who disagrees. “Even very damaged marriages can improve despite extraordinary child-rearing demands,” she says. Busy couples can do small things, like devote 20 minutes a day to their relationship. “This would still be less than two percent of the day,” Laura notes. She believes that protecting romance and sexual intimacy are also important, which can take some creativity. Laura points to the example of a mother of five children, including one with Down syndrome and one with autism, who loves to cook and prepares a gourmet meal on Friday nights. Each parent may have a child on his or her lap, but they still sit together with lighted candles and a glass of wine. Laura, who says special needs have been part of her daily life for the past 17 years, is a firm believer in “me time.” “All too often parents of kids with disorders feel they aren’t entitled to take time for themselves because their children have so many needs,” she says. “I think the opposite is true. It’s even more important for caregivers to take good care of themselves.” For Laura, just half an hour working on a stained-glass window project “transports me from other daily worries.” She believes that without time for herself it can be very hard to maintain a good marriage.

Blogging About It Mom: Jill Hoel

Children: Caitlin, 10; Sarah 8, who has apraxia, dyspraxia, autism spectrum disorder and receptive-expressive language disorder 

“Me time”: Snuggling up and connecting with my spouse Jill Hoel’s younger daughter, Sarah, was diagnosed with several disorders, making it difficult for the Orange County, CA, mom and her husband to find other parents dealing with the same issues. She started searching online and eventually landed in Yahoo! Groups, where she discovered a number of communities devoted to some of the same social, medical and emotional issues her family was dealing with. Today she oversees a global support group for parents. “The Internet has been a godsend,” says Jill. “Online groups allow you to glean information from parents who may have heard something that you haven’t yet.” For Jill, creating the support group gave her a sense of purpose and an outlet. “It allowed me not to wallow in self-pity.” The Internet has also helped Kristina Chew connect with people through her blog about her son, Charlie—one of a legion of homegrown personal sites about specific disorders. “My son was just turning seven and was having a lot of difficulties,” she says. “All the things you hear about autism, my son was experiencing. I had always written on the side, so I started writing online to reach out to others and see what would happen.” Kristina’s blog, which she started in 2005, soon took off. “I wanted to sit down and write every day, whether it was a good day or a bad day.” Kristina’s first blog no longer exists, but her current one, Autism Vox, is part of a new media blogging network and attracts some 3,000 readers a day, including parents of both children and adults with autism. “It was great to get more readers,” Kristina says. “Certainly, it was very gratifying, but it also made me feel that I was not so alone.”

Your Balance Checklist

Feeling depleted or depressed under the strain of caring for a challenged child? Amy Baskin, author of More than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs and mom to a teen who has autism, offers these tips.

LOOK AT YOUR JOB

Try to negotiate flextime or occasional telecommuting. “Many women we surveyed ended up changing careers and working in the disability field,” she says.

NURTURE YOUR HEALTH

Get a physical, get eight hours of sleep—and get moving. “Exercise can be a powerful mood booster,” Amy asserts.

SEEK HAPPINESS

Don’t neglect friendships. “If you’re feeling happy and connected, you’ll have more energy for your child,” she says. “Balance is physical and mental health, spending time with loved ones and feeling you’re contributing your abilities to the world.”

Online Lifelines

Spots where you can find around-the-clock support:

motherswithattitude.com Terri Mauro, who adopted two kids with special needs from Russia in 1994, offers humor and advice.

specialneedsmom.com A mother of two girls with complex 1 mitochondrial disease chronicles her life, focusing on the positive.

snapinfo.org Nadine Vogel founded this site to help parents navigate insurance issues and connect with one another.

p2pusa.org P2P-USA is a gateway to 35 statewide groups that link parents of kids who have special needs with mentors.

carecircle.com This site helps you create an online CareCircle (for $10 per month) to get practical help or emotional support for yourself or a loved one.

http://groups.yahoo.com/group/ourspecialneedschildren Jill Hoel, whose daughter has special needs, founded this group so parents could share their experiences.

http://hollandpostcards.blogspot.com Families of children with chronic or life-threatening illnesses or physical or mental disabilities share stories.

thismom.blogs.com A mother writes about homeschooling her son, who has Asperger’s.

http://specialneedsparenting.suite101.com Get help with special education needs and at-home concerns on a wide range of topics, including self-care.

soaringwords.org This site aims at helping children who suffer from chronic illnesses.

autismvox.com Kristina Chew, PhD, blogs about life with her son, who was diagnosed with autism, and shares related research.