Facebook   Twitter

Out-of-Sync Title

Taking Care of Yourself When Your Child Has Special Needs

Unpublished – Written for the now-defunct clubmom.com (August 2001)

Before takeoff, you buckle your seatbelt and listen to the flight attendant review emergency procedures. You hear that if the oxygen masks drop, you should adjust your own before assisting your child. Likewise, if you are on a lifelong journey as a special mom, you must care for yourself so you can effectively care for your child.

Self-care, however, requires TLC (Time, Liberty, Cash), resources often in short supply. Kathy Vestermark, mother of four, cherishes time for herself. “I gain stamina to advocate effectively for my child with multiple disabilities when I take time to do those things that ensure my self-preservation. Easier said than done!” Kathy adds, “My husband often reminds me to do something for myself. It’s hard not to give endlessly to others – especially to my son. I worry that if I relax my efforts, so will he.”

Psychologist Griffin Doyle, PhD, comments, “Parenting a unique child is a most difficult adjustment.” Coloring the parents struggle often is their guilt about not possessing sufficient emotional resources to match their internal image of an ideal, all-courageous parent. “Parents who respect, admit, and work through their guilt or other agonizing feelings truly are caring for themselves,” he adds.

Also, self-care can be a priceless model of self-esteem for the child to emulate. Balancing your needs with your child’s is the ticket. Here are suggestions from moms who achieve this balance:

1) Exercise daily. Donna Keating, whose five-year-old daughter has sensory processing disorder, says, “Usually, moms assume the task physically and emotionally of the child. It zaps every part of you. Exercise is so essential to relieve everyday stresses. I stick to my work-out schedule and rarely feel guilty about taking time out for myself.”

2) Volunteer for groups that are needier than you. Sorting clothes at Goodwill or serving soup at a shelter, you may feel less self-pitiful.

3) Take classes. Nanette Bevan, mother of three boys, one with Down syndrome and one with spinal muscular atrophy, says, “Pay for a course and go.” Nanette crafts glass and silver jewelry. Learning new techniques or working in the studio, she is in the flow. She stops worrying about her sons’ problems and returns home refueled.

4) Listen to soothing music. The Mozart Effect recordings and Nourishing the Caregiver (available through www.SensoryResources.com) are produced specifically to relieve stress and restore order. A loftier idea is to get the piano tuned and make music.

5) Talk to someone, besides your husband. If you talk only to him, Nanette advises, you ll probably keep bonking up against each other over the same issues. A sympathetic friend or relative can be a lifeline, especially if the person shares your sense of humor. Consulting a psychotherapist is also extremely worthwhile. Donna comments, “When your child has special needs, you spend every waking moment thinking and planning to stay ahead. Moms require quantities of support that a spouse, relative, or friend can’t easily provide. On days when the light at the end of the tunnel seems nowhere in sight, I find some relief networking with moms with similar children.”

To find a support group, visit websites related to your child’s disability. Many have message boards for sharing concerns, information, and even belly laughs. For families with children with SPD, a wealth of information about joining or starting a Sensory Processing Disorder Parent Connections group is available at www.SPDnetwork.org

6) Seek respite care for an afternoon, evening or weekend, at home or a licensed facility. Finding respite care is challenging. It can be cost prohibitive, and providers may be scarce. Perhaps your local government can guide you to grants to help you meet the costs. Groups that provide respite care, sometimes free, include:

• Local chapters of national organizations such as ARC (Association for Retarded Citizens) that offers Parents Night Out (www.thearc.org/faqs/respite.html) and Easter Seals (www.easter-seals.com)
• ARCH National Respite Network (919-490-5577 or www.respitelocator.org/index.htm)
• Campus Ministries or public service groups at colleges, where students may gladly volunteer to baby sit for kids as special as yours
• Hospitals and Red Cross chapters that train providers of children with special needs

7) Nurture good babysitters. Amy Cunningham, whose son’s visual dysfunction lowers his tolerance for new people and situations, advises, “Once you find good babysitters, woo them. Treat them like honored family members – and pay them well. Do whatever it takes to ensure their return.”

8) Barter time with similar parents of similar children. If you are single, maybe you can watch your child and other kids simultaneously. A babysitting co-op may also work well. To locate one, consult neighbors, community newspapers and bulletin boards.

9) Think positively. Amy says, “I take better care of myself, my son, and everyone else I love when I not only accept what is, but also acknowledge the secret, sweet, up side that makes my life seem divinely designed.”

When you find the time to care for yourself, you will see your family’s spirits soar. Buckle up, and let’s go!