Parental Guilt and Children with Developmental Disabilities

Recently, at a holiday meal with my extended family, it came to light that neither of my typically developing teenage children really knows how to tie his or her shoes. It seems that for the past decade or so, both have been using the “bunny ears” technique introduced to preschoolers for tying their shoes. My children appear never to have moved on from there to the mature “around the tree” technique. Now, if just one had this pattern, we could chalk it up to individual differences, but the fact that neither has mastered a skill expected by 7 years of age—well, before I knew it, the eyes of all my relatives seemed focused accusingly on me…or so I thought. I, in turn, found myself feeling an emotion I am not unfamiliar with: guilt.

Ah, parental guilt. I believe all parents experience this emotion at times. But based on my experiences over the past 20 years as a developmental pediatrician at Albert Einstein College of Medicine’s Children’s Evaluation and Rehabilitation Center, parents of children with disabilities take on far more parental guilt than other parents. It rolls in at the time of the initial diagnosis of developmental disability, and surfaces regularly through the years of raising children into adults with developmental problems.

Guilt at Initial Diagnosis
For example, guilt finds its way into the history parents share with me at the time of the initial diagnosis. It seems no matter when the diagnosis is made, the parents are always wondering if it should have or could have been made earlier. They will replay in their minds early observations about their babies. Did they ignore important signs? Delay seeking input? “We shouldn’t have listened to the pediatrician when he said to watch and wait” and “If only I had listened to my neighbor’s or friend’s suggestion to get my son checked out” are common laments.

What Did We Do Wrong?
The cause of the developmental disability is another topic that inevitably gives rise to parental guilt. Mothers frequently ask, “Did I do something during my pregnancy (or not do something) that caused this?” Parental guilt often leads parents to comb through the family tree with a guilty eye: “Did this disability come from my side of the family or yours?” “Is God punishing me for something I did wrong by giving me this child?”

Then there are the “If only”s: “If only we hadn’t moved away from our family”; “If only we hadn’t had another baby so soon”; “If only we hadn’t worked full time and put him in daycare. …” The literature doesn’t help. Every few months there is another headline announcing that some parental quality or situation is associated with an increased risk of having a child with autism: for example, babies are more likely to be autistic if they are born to older mothers or fathers, overweight mothers, mothers who took various medications during pregnancy, and on and on.

For one mother with a child with a significant disability whom I have known for many years, the mom’s history of alcoholism causes guilt. When her baby was born with developmental problems, the problems were attributed to the mother’s consumption of alcohol during the pregnancy. The mother, now long sober, spent years feeling that her actions had caused her daughter’s significant developmental disability. Recently, more-sensitive genetic testing that is available showed that the child has a genetic mutation, a “genetic accident” that most likely occurred at the time of conception, and this mutation—not the alcohol—was likely the cause of the child’s developmental problems. When that information was shared with the mother, the reaction was immediate and dramatic. I saw years of parental guilt slip from her shoulders. She actually sat up straighter right before my very eyes, relieved of the heavy burden of parental guilt she had been carrying for the previous 18 years.

Is My Child Getting the Right Treatment?
In families of children with autism, I hear guilt come up frequently surrounding treatment decisions. A particular celebrity appeared on late-night TV talk shows claiming to have cured her child’s autism with the gluten/casein-free diet. Parents often describe feeling “guilted” into using this difficult diet, despite its lack of empirical support, by other parents at support groups, or by therapists, neighbors and so on. Reports in the media on therapeutic techniques that, when implemented early, reduce autism severity have also contributed to parental guilt in the many families I work with whose children continue to have severe autism despite receiving excellent intervention. Inevitably they question: “Did we give enough therapy?” “Did we start the therapy early enough?” “Did we advocate enough for therapies—maybe he would have done better with more therapy, or with different therapy…?” Guilty consciences for parents of children with developmental disabilities come up with endless numbers of “what if”s.

Words That Wound
Parents often tell me how comments of others frequently spark their feelings of guilt. Parents of children with severe autism describe strangers making thoughtless comments that elicit guilt: “Oh, you didn’t get him early intervention” (the assumption being that any child who received early intervention would not have such severe symptomatology at this point…alas, untrue). When a child has emotional or behavioral outbursts in public due to the core features of autism—at family gatherings, religious services, restaurants, on the subway—these are situations ripe for eliciting parental guilt. Parents regularly describe being berated by other people for spoiling their child. Strangers will shout out unsolicited advice when they are dealing with the child’s behavior. Strangers have called Child Protective Services, reporting parents for their out-of-control children whom they have difficulty soothing in public. These situations are among the most stressful for parents of children with severe autism, undermining their confidence in their parenting, leading to reluctance to take their children out in public and making parents of these children feel very GUILTY.

Guilt over Neglecting Typically Developing Children
Then there is the double whammy of the guilt parents of children with special needs feel toward their typically developing children. I frequently hear from parents who worry that, with all the time and resources required by the child with special needs, the other children in the family are “neglected,” deprived of the parental attention they require. Parents express feeling guilty over the daily stress and disappointments that can go along with having a severely impaired sibling. Over the years, there is often guilt expressed about the eventual need of the typical siblings to be responsible for the one with developmental disability when the parents are no longer around, the anticipation of guilt following the parent to the grave.

When our conversation about the deficient shoe-tying wrapped up at our holiday table, my daughter must have recognized that faraway look I tend to get when the wheels of my mind are in motion. She said, “Should I expect that your blog audience is now going to be aware that I can’t really tie my shoes?”

“Yup,” I said.

I feel a little guilty about that now too.