When Julie Chapman found out her young son Jordan suffered from developmentally debilitating cerebral palsy, she tearfully wondered, is he ever going to be OK? This is not the child she thought she’d have. In fact, it took her years to become a parent (she and husband Greg finally adopted two sons after battling infertility).
The Dallas mom never expected to become the family caregiver, suddenly thrown into a bewildering juggernaut of disability resources, health insurance red tape and medical experts—all the while juggling 24-hour nursing care, another child, marriage, home and volunteer work.
“I thought, poor me, poor us,” recalls Chapman, who admits to dwelling in a pity party. Wondering when the next shoe would drop, she began just “going through the motions” of life and parenting.
Although she acknowledges now that she was completely overwhelmed, at first she didn’t want to share her predicament. “If I asked for help, I felt like I’d be the only mom on earth who doesn’t know what to do,” she divulges.
With the added emotional, medical and social challenges of raising a child with special needs, Chapman started to feel like she was drowning. Actually, she was suffering from depression.
Down & Out (and Not Alone)
Struggling to make sense of a foreign, chaotic and often lonely world, 40-70 percent of family caregivers show clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression, reports the National Family Caregivers Association (NFCA) in the 2006 “Assessment of Family Caregivers: A Research Perspective.”
Mothers of children with autism had the highest rates of depression, according to a pivotal report published in the Journal of Intellectual Disability Research. Additionally, mothers of children with an intellectual disability (ID) had higher depression rates than parents of normally developing children (single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner).
Notably, fathers of children with disabilities showed normal depression scores. Why are moms at greater risk for spiraling into depression? The study suggests what is obvious to many women: We take on a greater share of the responsibility of parenting, are more likely to give up our jobs and interests and our self-competence is often tied to parenting—something that is tested beyond measure with a special-needs child.
“Parenting a child with ID increases the risk of provoking feelings of loss (i.e. of the perfect or dreamed of child and of one’s personal freedom), helplessness (i.e. experiencing high stress, not being able to change the situation and not being able to get the help one needs) and failure (i.e. having a child with difficult behavior and not being able to pursue one’s personal goals in life),” notes the study called “Depression in Mothers and Fathers of Children with an Intellectual Disability.”
Help Yourself First
Denise Brodey’s 4-year-old son Toby was diagnosed with a combination of sensory integration dysfunction and childhood depression. Everything was “too loud, too bright, too noisy” for Toby, and “managing his condition was a time suck,” says Brodey.
“This is not what we thought parenting would be,” declares Brodey of her and husband Jeffrey’s initial reaction. “In the very beginning, it all seems very depressing. There’s just no way around it.”
The journalist mom, who now leads the Your Life section for USA Today, worked through her grief by writing The Elephant in the Playroom, an intimate collection of revealing essays by parents who share the highs and lows of raising children with special needs.
She also sought treatment for depression, at the urging of her parents, who are mental health professionals.
“Whether you take medication or get therapy, you have to admit when you are depressed and it’s OK to be depressed,” stresses Brodey.
Tracy Harrington, Ph.D., licensed psychologist at the Child Study Center in Fort Worth, provides assessment and diagnosis of special-needs disorders. She sees firsthand the devastation a diagnosis can bring to a family, noting that often parents exhibit denial and anger or guilt and shame.
She advises parents to learn the signs of major depressive disorder. While it’s normal to experience ups and downs—everybody has bad days—it’s time to seek help when symptoms, such as hopelessness, exhaustion, loss of interest in pleasurable activities, changes in eating and sleeping, and even thoughts of death, start to permeate everyday life for at least two weeks.
Chapman acknowledges the stigma attached to depression, but reassures parents that you can’t fault yourself for feeling down. “As parents of special-needs kids, we are obligated to turn it around,” she notes. “You can’t help them if you can’t help yourself.”
‘Get a Life’
Cindy and Jeff Miller’s son Benjamin was diagnosed with viral encephalitis when he was 2 (he is now 16 and functions at the level of a 3-5 year old). “At first my husband and I were totally focused on helping Ben recover. It was physically, emotionally and mentally exhausting,” the Arlington mom recalls. “As time went on, we went through the various stages of grief over and over again, and began to realize that we might be hit by it at any time and by any situation.”
Miller suffered from postpartum depression and knew once she received Benjamin’s diagnosis that she would need professional help. She began taking anti-depressant medication and seeing a therapist who asked her what she was doing for herself. “I replied, ‘There is no self right now,’” recalls Miller. “And, she said, ‘Get a life.’ It was the best piece of advice I’ve ever received.”
Harrington says she reassures parents that this is “not something you caused,” and counsels them to put the focus on the strengths of the child, as well as plotting the next steps to advocate for their child.
To help cope and to seek solace, Miller founded Mothers of Magnificent Stars (MOMS), a close-knit group of mothers of children with special needs.
“They are my best friends and they ‘get it’ without having to explain anything,” she asserts.
The Millers also pushed hard to get relief through government resources. Working closely with their social worker, they found out a way to circumvent the waiting list for the Medically Dependent Children’s Program (MDCP), giving them access to respite care and Medicaid for Ben. “Our world opened up,” says Miller.
“That was a definite change for the better in our lives because we get more rest and have more time to spend on date nights or time with our other child, Olivia,” reports Miller, who also was able to go back to work as a special education/resource teacher at Thornton Elementary in Arlington. “I realized that I have turned my son’s illness into something that can benefit other children and other families.”
Chapman also set her sights on a career advocating for special-needs children and is now the admissions director of Oak Hill Academy in Dallas. She learned early on that it would take a village to support her family, one that includes therapists, doctors, friends, teachers and pastors.
“It keeps you from feeling the burden is all your own,” offers Chapman. “Your circle of support can never be too large.”
Dr. Catherine Karni, associate professor of psychiatry at UT Southwestern Medical Center, advises parents to connect with other special-needs families who have gone before you, whether you join a support group, start your own, find a mentor or seek out blogs, online forums or books.
For Brodey, reading the tales of other parents’ experiences was a revelation. “I suddenly realized I’m not alone,” she shares. “It helped.”
Brodey describes in her book: “The best advice I’ve gotten has been from other harried, worried parents with children just like Toby. Knowledge of how they handled school, playdates and tantrums was power. It made me feel less weird, more ‘in tune’ and more capable with my special-needs child.”
Put the ‘Me’ Back in Mom
Moms have a habit of taking over, feeling as if no one else can take care of our child the way we do, notes Brodey. But often that can lead to putting our own needs last on the day’s long to-do list, especially proper rest.
“Along this journey, you’ll need to take care of yourself; caring for yourself is caring for your child,” stresses Karni, who also serves as medical director of Outpatient Services at Children’s Medical Center, Center for Pediatric Psychiatry, as well as the Crystal Charity Ball Autism Project.
Brodey tried to do it all, managing the family’s schedule all day and staying up late to pursue her own interests. In the end, she not only lost sleep, but also she lost herself.
“I felt like I was losing my mind,” she recalls. “For me it was a constant battle to battle my expectations.”
She realized that if she could solve even one thing, it would be to reclaim her Zs (and her family’s sleep). And, it changed everything, she reports. Brodey now makes time to exercise with a personal trainer—a form of therapy that works for her—and is writing a second book about facing fear (in addition to her full-time job).
She also engages in what Karni dubs positive “self-talk.” Brodey reminds herself (and other special-needs parents): “You’re doing everything you possibly can. You can’t let yourself forget that.”
You also “don’t have to give every ounce of your being to raising your child,” says Chapman. In fact, Karni recommends parents continue to seize their own dreams and make it a priority to find down time to re-energize.
Miller admits it’s not easy since every day presents a new puzzle to be solved for special-needs families and, occasionally, developmental setbacks.
“It’s important to expect a roller coaster ride,” says Chapman. “Remember as you ride you are going to come to loops and twists; enjoy the good times, but don’t be surprised by the bad. Where you are isn’t where you are going to stay.”
Miller suggests building up a storehouse to prepare for the tough times. For instance, your storehouse might include a friend who you can lean on for emotional support—someone who isn’t going to fix it, but who will listen and simply give you the freedom to scream, cry or vent on a moment’s notice.
Chapman urges families not to get stuck in the moment or even project forward. Instead, look back at the past six months and revel in the progress your child has made.
Special Needs = Special Attention
Having a child with a disability can be a challenge to your marriage, asserts Karni, so it’s important to carve out time alone with your spouse, as well as other children in the family.
Brodey advises that spouses fall back on the basics and remember that they are a team. It helps to keep a sense of humor, too.
She and husband Jeffrey hashed out on paper who was responsible for all of the tasks needed to make their family hum, from therapy appointments to bill paying. Now they don’t nag each other about getting stuff done.
Miller leaned on spouse Jeff’s positive attitude to get through the tough times. Chapman and her husband Greg attended couples therapy and spiritual retreats together (they are now separated but remain committed to their family).
“You have to celebrate each little victory together,” notes Chapman. “Instead of blaming yourselves, you have to ask, ‘What can we do together to turn lemons into lemonade.’”
Chapman’s children are now grown, with Jordan off to college—something Chapman didn’t think possible.
“Your child many not be what you thought, but you won’t be any less proud,” she assures.