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Women Often Bear Brunt of Caring for Special Needs Children

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Cross-posted from New Deal 2.0.

In her recent memoir, "Buzz: A Year of Paying Attention," Katherine Ellison introduces readers to the world as it is experienced by a parent of a child diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD). Her memoir is moving, even riveting, beautifully-written and totally credible. As his mother describes, living with a child like Buzz requires extraordinary devotion and care. Like many children with serious disabilities and chronic illnesses, Buzz's needs for parenting have been enormous. As Ellison confronts her son's troubles, she also confronts her own history of ADHD.

Ellison's account reminded me of some of the worst days I spent being a parent to a child with a much less difficult condition, a mild version of ADHD. Parts of Ellison's wonderful book left me cringing about times when I acted badly as a parent out of aggravation, frustration and even fury at my son. Why couldn't he just sit down and get his homework done after school? Why did we have to break every instruction into parts? Why was he always in my face? And why was it impossible to have three or four enjoyable moments in a row in a restaurant?

As Buzz's mother recounts, difficulties were apparent early in elementary school, where Buzz had trouble staying focused and calm. At home, he was often explosive and aggressive. By the time he was in second grade, his school was recommending he be evaluated. His circle of friends grew smaller and smaller, eventually disappearing altogether. The chaos Buzz creates becomes too much for everyone, including his mother. Then, one day, Buzz goes even further over the edge with a violent threat.

Ellison learns that children with Buzz's diagnoses are usually treated with medicines, and that the medications usually include some kind of methamphetamine, known on the street as speed. Highly resistant to medication as an answer for herself or her son, she uses her considerable skill as a journalist to search for alternatives. Eventually, she and her husband conclude that medication is necessary along with other interventions. The most important of these, she concludes, is the increase in her own attentiveness to understanding Buzz.

My son, unlike Buzz, is now grown. While still affected by ADHD, he has become adept at coping. He is a loving, affectionate, caring, gracious adult, who is mostly happily engaged with the worlds of work, family, friends and nature. How he got there is a long story, but one important piece, and another way in which his story seems to differ from Buzz's story, is that his father and I learned how to work together to help him, which was anything but easy.

Early in the book, Ellison describes Buzz's father as not seeming "to notice most of the troubles with Buzz, which ... were keeping me awake at night." She finds herself working on him to get him engaged more fully with their son -- to help her on the medication issues and his taking responsibility for getting Buzz's day started. But her initial experience of feeling like she is parenting alone is not uncommon.

The more I look at families of children with disabilities and chronic illnesses, the more I appreciate how tough it is for parents to learn to work together to help their child. More so than other parents, parents of special needs children seem to adopt specialized parenting roles, with mothers most often undertaking the bulk of the child's special care needs and fathers undertaking the bulk of the breadwinner duties.

Hard as it is to think about, this usually gendered parenting practice of specialization needs to be challenged. Years ago, feminists began to advocate for shared parental responsibility; otherwise women would have little opportunity to develop themselves except as mothers. Because of economic changes driving more women into paid work and because of feminism, many parents, especially in younger cohorts, now engage in a higher degree of shared parental responsibility. But this change hasn't happened as much in families where parents are raising a disabled or chronically ill child. These special needs children, however, may need to have two equally involved parents even more than other children.

Partners often pick each other because they are different from one another. Having access to both of the complementary personalities of the parents can be vital for the child. My husband was far better than I when it came to having sympathy for our son's struggles. He also excelled at encouraging his athletic activities, for connecting him with nature, for helping him to improve his people skills and for just having fun with him. I was better at keeping our son organized, making sure he got adequate help at school, and planning for future events. I was the hard-ass who didn't let daily tasks slide, at least most of the time, and who taught him how to appreciate the usefulness of calendars and lists. (Among the many gifts he's given me in return was helping me appreciate algebra, something most unlikely to happen in the absence of my supervising his homework almost every day for a year.)

In the case of Buzz's parents, Ellison is the one who seems more spontaneous and energetic, while her husband appears more phlegmatic and analytical. Buzz responds to both. One of his most successful teachers, as well as a Harvard researcher with whom both Buzz and Ellison connect, is similar to his mother - people who explode with energy and intensity while simultaneously exhibiting a high level of disorganization and even distractability. All three of the people who helped Buzz successfully prepare for his bar mitzvah appear to resemble his father -- each appeals to Buzz through a combination of calm attentiveness and a quiet demeanor.

A child whose parents are working together also has a chance to observe people who are facing problems and work through their disagreements. By modeling conflict resolution, the parents give the child both an incentive to develop social skills and more knowledge about what works and what doesn't work.

When parents specialize, they risk losing touch with each other as well as depriving the child of access to twice as many parental talents. They are both doing tough work -- one mostly at home and one mostly in the marketplace, and it's hard not to become angry, distant and resentful in ways that tear their relationship to shreds. Resentment can also lead parents to deprive each other of the support each one needs, especially when the child's special needs leave the caretaking parent depleted emotionally and exhausted physically. The divorce rate for parents of young children diagnosed with ADHD is about twice that of other parents. My husband and I used to be like a tag team and sometimes play "toss the child." The term wasn't about a physical act; it was about our recognition that sometimes a depleted parent needed to get away from our son for a while, with no questions asked. Doing that without us feeling angry and resentful of each other wasn't always easy.

Traditionalists in our society sometimes preach that fathers must be involved with their children because fathers add a masculine perspective to the lives of their children and they teach their children how to live their lives in properly gendered ways. In my view, the masculine perspective is not what's lacking when parents specialize; it's the interactions of two complementary personalities. It doesn't matter, therefore, whether parents are both female, both male, or different sexes. So long as neither parent is neglectful or abusive to the child or aggressive toward the other parent, what matters is two things: the child needs to have enough time with both to have a relationship that helps the child grow fully, and each parent needs to be able to look to the other for support and comfort.

Employers who pay too little, demand too much and intrude too often on family time can make it tough for parents not to specialize. Ellison describes her husband's work as highly stressful, extremely time-consuming and inflexible. Like many mothers of special needs children, she made multiple adjustments in her own work as a free-lance journalist so that she could be available for Buzz and his brother, but she doesn't appear to have asked her husband to try to restructure his work. And, like many fathers of special needs children, Buzz's father does not appear to have volunteered to seek a restructuring.

Resisting parent-hostile employment practices is often not an option in our current economic situation. If parents find themselves forced into specialized roles because one is in a parent-hostile situation, however, both parents can still take responsibility for seeking ways to make parenting a top priority. Motivation is difficult, however. Seeing your child go through hard times is painful. Parents can make the emotional mistake of blaming themselves for the child's problems, and nobody seeks pain and criticism as a way of life. Fortunately, my husband and I discovered the importance of checking in with the other about how we were hurting. We also found we could turn to friends, family and even support groups. When we could turn to others for help with our son, it made us feel less isolated, more welcomed (even into restaurants where he acted up!) and much more competent as parents.

Ellison's story of paying attention to Buzz cannot help but make her readers more sensitive to the challenges that parents face when they are raising a special needs child. All parenting is tough, but Ellison's experience is, like that of many parents of special needs kids, qualitatively and quantitatively different. To the extent that she has to parent alone, both she and Buzz suffer a loss. As I write about chalimony and other legal changes that take into account the lives of parents raising disabled and chronically ill children, the importance of identifying policies that encourage shared parental responsibility is high on my list of goals. Chalimony, for example, would be payable by a divorced parent only if he or she didn't provide enough of a child's care to allow the other parent to engage in paid employment. Employers with parent-hostile practices should be liable for discrimination so that parents can decide not to specialize without sacrificing their jobs. Schools should require teachers to use the web to keep parents informed about assignments, problems and performance so a parent can check on a child while the parent is at work. Living with children like Buzz would not be quite so difficult if we could all resolve, like Ellison, to begin to pay attention.

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