of Children with Special Needs

by Judy M. Miller

Many parents of children with special needs appear to parent with grace, balance, and energy. They also seem remarkably stress-free and organized. In the face of all of these challenges and more, what habits do they embrace that allow them to be so effective?

They are proactive and advocate for their children and educate others.

Parents become experts about their children and their needs. They conduct ongoing research; ask questions of therapists, doctors, specialists, and other professionals; and keep an organized binder full of notes and important information. They create and add to their at-home special needs libraries. They are knowledgeable about vernacular, treatments and services. They are well versed in the state and federal laws that regulate services for their children. Because of their knowledge, parents are effective educators of their child’s faculty and staff. They are powerful advocates for treatment, services, and support-in and outside of school.

Ashley and Dallas Olson of Peachtree City started advocating for their daughter Anna, now 13, early on. Anna has a dual diagnosis of Williams Syndrome, a chromosome disorder that affects fine and gross motor skills and can cause other developmental delays, and autism. “We call it the double whammy,” Ashley says. Soon after the diagnosis, they started researching her condition, and talking with doctors and therapists to find therapies to help her. “It felt like a lot of the time I was educating the doctors about Anna,” Ashley says. “I’d always been a very shy, quiet person and being able to stand up to a doctor was very difficult for me.”

When Anna entered first grade, “she was in a great public school, but they didn’t know what to do with her,” Ashley says. The couple pulled her out after a month and enrolled her in the Joseph Sams School in Fayetteville, where she’s getting the education and therapies she needs.

“The Joseph Sams School has been life-changing for her and for our family,” Ashley says. “She loves it. She feels happy and accepted. School and going to the beach are her two favorite things.”

They maintain a sense of “normalcy” within the family.

Effective parents realize that although everyone in the family is affected by their child’s disorder, they are not defined by it. Parents work to ensure that siblings have childhoods and do not take on adult responsibilities. They encourage siblings to spend time with their friends.

The Olsons work hard to focus on all three of their children. Parker, 16, is a good student and soon will be college-bound; Mary has the needs of a typical 7-year-old. Ashley says they’ve heeded the advice of her parents’ friend, who raised a child with Down syndrome. “She called me out of the blue” after Anna’s diagnosis, Ashley says, and told Ashley: “Your child will most likely be living with you the rest of her life, but remember that you have other children who will grow up and leave and be out in society and you must never forget that.” The Olsons aim for a balance between Anna’s needs and those of Parker and Mary.

Parents are proactive about training other family members, friends and sitters about how to care for their child so that they can have time for themselves – individually and as a couple, perhaps going out on weekly dates. They also spend time in the company of other adult friends.

They take care of themselves.

Parents nurture their needs, and recognize that doing so is important for them as well as their children. Effective parents take care of their physical, emotional, psychological and spiritual needs.

They eat nutritious unprocessed food and don’t skip meals. They make sure their bodies are properly hydrated. They schedule time for regular exercise, by themselves or with friends. They engage in activities that offer creative or intellectual enrichment.

They manage their stress.

Effective parents are intentional about reducing stress in their lives by setting time aside each day to promote calm and centering. They adopt practices such as prayer, deep breathing and meditation to replenish their inner reserves. They resolve to forgive people for letting them down or for rejecting their child.

When parents lead lives that are stress-free and balanced, all family members, especially children, win. Research, by the Gottman Institute supports that children fare better emotionally, socially and academically when parents manage their stress properly.

Ashley exercises and participates in Bible study at her church and in a neighborhood book club – activities that “have nothing to do with special needs children.” The family also has a network of friends with children with special needs and friends with typical kids, and friends with a mixture of both.

They make rest a priority.

While any parent can tire in their parenting responsibilities, parenting a child with special needs can elevate fatigue to a whole different level. Sometime parents don’t realize the extent of their exhaustion. I didn’t – my child’s physical therapist pointed this out to me.

Effective parents realize the importance of getting to bed as early as possible, or taking naps to offset the sleep they lose due to their child’s irregular sleep patterns – up and down throughout the night, late to bed, and/or early to rise.

They surround themselves with energy givers.

People are either energy zappers or energy givers. Effective parents opt to spend time with people who lift them up, make them feel confident, positive, and happy. Parents of children with special needs appreciate and need this energy.

They have a support group.

Parenting a child with special needs can be lonely, but there is no need to be alone in the journey. Effective parents are part of or have created a group of parents whose parenting journeys are similar to theirs. People on the same journey understand what you are dealing with, and their support helps parents stay calm and focused on their child’s needs.