Tuesday, September 25, 2007

When All Does Not Go Well

Over at The Preemie Experiment we are talking about brain bleeds, IVHs. A brain bleed in a preemie can result in neurodevelopment disabilities (such as cerebral palsy), cognitive impairments (mental retardation), learning disabilities, and autism.

My second oldest son, by 4 minutes, did not have a brain bleed. In fact at age 2 he had a MRI, which was “entirely normal.” Yet, he has a severe mental impairment, severe autism, mild CP and is legally blind. He has some language. He can ask for “pizza”, “bread”, “suckers”, and “water.” He will ask to take a bath or to go to bed. Occasionally he puts his clothes on the right way, although more often than not, they are on backwards. Including his underwear! He was fully potty trained at age 9, one year ahead of our goal of age 10. He is not the poster child for a successful outcome in the NNICU.

What a ride he had in the NNICU. At two weeks, he perforated his bowel and needed an ileostomy, which was reversed when he was 99 days old. Clearly, having an ileostomy is very stressful. Within hours of his reversal surgery, he came finally off oxygen. He also transformed from a very placid, mellow (perhaps exhausted?) baby to a much feistier one. Not having his bowels connected took the stuffing out of him, literally as well as figuratively.

At five weeks his PDA reasserted itself and needed to be surgically ligated. The doctors also inserted a Broviac central line. Later, they found yeast in his blood. He developed inguinal hernias, which were surgically reduced at the same time his ileostomy was reversed. Finally, when he was 107 days old, he had laser surgery for his ROP. At 114 days, he came home. No oxygen, no monitors, no meds. He sat up at 6 months adjusted, crawled at 10 months adjusted and walked at 12 months adjusted. He echoed his first word at 4 ½. He began using some meaningful language at 6, if you can call saying “shelf” for “open” meaningful.

Today, he attends a center-based school where he has access to a pool for hydrotherapy, horses for hippotherapy and a well-equipped sensory room. He has been a student at this school since 2 ½. He is now 12.

On the other hand his twin brother, who had a small brain bleed, is fully included in a general education classroom doing grade level work with no accommodations. Son number 1 weighed 1 pound 6 ounces; son number 2 weighed 1 pound 7 ounces. Both were 25 weeks gestation.

Two babies, two very different outcomes.

Monday, September 10, 2007

Why Circling Normal?

I had intended to move on to discussing my second oldest (by 4 minutes) but instead decided to explain why I named this blog “Circling Normal.” Helen Harrison, who is one of my heros, very eloquently described the coping mechanisms of parents of children with disabilities. She called it “Making Lemonade” after the popular saying, “If Life Gives You Lemons, Make Lemonade.” I call it “Circling Normal.” Since there is no way that I will ever be as eloquent a writer as Helen, I am reprinting her essay here. The link to Helen only describes one of her contributions to improving the lives of premature children. I would need to devote a separate blog to the remainder of her contributions. Perhaps I’ll ask for her CV.

Making Lemonade: A Parent's View of the Quality of Life Studies
by Helen Harrison (published in 2001 in the Journal of Clinical Ethics)

"It is a mistake to confuse coping mechanisms with quality of life."
—Carolyn Daniels, Ph.D., social worker, McMaster University Hospital, 1985-1995


Upon becoming parents of a disabled or “high-risk” child, one of the first things we learn to do is lie—to our friends and family, to the doctors, to our child, and to ourselves. We quickly learn that others do not want an honest answer when they ask, “How are you (or your child) doing?” and we oblige by giving the positive and politically correct answer.

“When I mention Andy’s condition,” writes Jennifer Hamilton, mother of a retarded child, “I can almost count on the response: ‘But he’s happy, isn’t he?’ It isn’t merely a conventionally polite question; I sense real anxiety behind it. The ‘dumb but happy’ notion is one way of avoiding confrontation with painful and complex realities. But it is not really the questions people ask that disturb me as much as it is my reaction to them. Because I am aware of others’ need for reassurance I find myself offering them the comforting lie, ‘Oh, he’s just as happy as can be.’ Then I smile confidently and change the subject.”

We don’t lie just to reassure others. An arguably more important motive is the need to comfort ourselves and give positive meaning to the immense physical and emotional difficulties of our lives. We refer to our children as “miracle babies.” We want to believe that we have become “better” and “braver” through participating in their medical ordeals and developmental struggles. We are “special parents” to “special children.”

We lie to deny, or at least postpone, unpleasant realities. We believe that our children’s problems can be overcome with therapies, interventions, and, of course, the “right” parental attitude. If we play our role with bravery, all might end happily. Our children’s doctors and therapists instruct us in euphemisms: our children do not have cerebral palsy or autism, they have “tight muscles” or problems with “sensory integration.” Our children are not retarded, but “developmentally delayed.”

Disability rights advocates caution us against using phrases that begin with the words “suffering from,” even when our children’s conditions involve substantial pain. We learn to keep a straight face when we describe our children as “handi-capable,” “not typically developing,” or “severely differently-abled.”

But, in private, we still feel guilty and ashamed. Our bodies or our genes have somehow malfunctioned and, as a result, our child and family must now cope with painful consequences. In public, we cringe as strangers try to stare past our child’s odd behavior, strange appearance, or bizarre and complex medical equipment. We suspect they are thinking: “What did that mother do wrong?” “How much of our tax money goes to support these children?” and “I sure am glad that isn’t my child!” We feel an urgent need to defend ourselves against our harsh inner judgments and those we suspect others make about us.

Helen Featherstone, mother of a child with severe disabilities, writes that most parents of handicapped children “resist any interpretation of their lives that would convert them into objects of public pity. Like the disabled themselves, they are, they keep insisting, ‘leading a life.’ ” We assume our bravest face to tell the strangers in the supermarket or the doctor’s office (the ones who dare to ask) that we and our child are doing just fine, thank you! “I have known mothers so conditioned to being brave,” writes Hamilton, “that they have practically convinced themselves that their child’s disability is a blessing.” Some of us, wishing to extend these blessings to other families, support “Baby Doe” legislation.

We try to raise the self-esteem of those of our children who are able to understand the concept, by reminding them of their heroic fight for life and by encouraging them to accept and embrace their “challenges” with pride. The guilt we feel for being the agent of the damaging conditions of their births—and the guilt our children feel toward us for being the cause of pain and upheaval in our lives—adds poignancy to these efforts. One mother of my acquaintance told of repeatedly trying to convince her daughter to be proud of having been a miracle baby. But when the child was given a school assignment to write about the one thing about herself she would change if she could, she wrote a bitter essay about her premature birth.

Nevertheless, the familial and societal pressures on our children to think positively are strong. Prematurely born teenagers and young adults have told me of their need to appear brave to protect their parents from further pain. They also worry that if they openly express grief or discuss their frustration and pain, it will be viewed as an act of disloyalty by others in the disability community, a culture that “celebrates disability” and scorns the notion that handicapping conditions might cause problems beyond those imposed by social prejudice. Eventually most children with disabilities, like their parents, learn to put on a brave public face.

There are, of course, a few parents and children who insist on revealing the uncomfortable private truths of their lives, but they do so at their peril. “In this relentlessly upbeat culture,” writes Featherstone, “it takes courage to confess to personal despair.” One young man featured in a documentary on retinopathy in premature infants discussed the difficulties he had personally experienced from his blindness and stated that he would not want a premature baby of his own treated in a neonatal intensive-care unit (NICU). He was severely rebuked for this opinion by other blind adults. Adults who speak with candor about their disabilities have been driven off Internet support lists and ostracized by their peers. Parents who express unhappiness about the conditions of their children’s lives (and their own) may find themselves barred from support groups for “negativity.” Physicians and therapists label such parents as “angry” and “embittered” and refer them for counseling and even for investigation as potential child abusers. Parents who express their despair in public, especially if they question the ethics of aggressive treatment for extremely premature infants, are accused of being “bad parents” and “prejudiced against the handicapped.” Some mothers and fathers have told me that for speaking out they have had their jobs, and even their physical safety, threatened. It is clearly dangerous to challenge other people’s coping mechanisms.

Parents often tell me that they are afraid to speak out in public lest their sentiments be misinterpreted. They fear accusations that they do not love their child, accusations that would only cause their child and family further pain. “The only parents who can speak candidly,” a NICU nurse and mother of a preemie told me, “are those whose children are too disabled ever to understand.”

But parents of more severely disabled children have their own set of silencing fears. “We have to beg for every service and every bit of equipment our child gets,” states the mother of a multiply handicapped preemie. “There is no way in the world we could afford this on our own. We are totally dependent on the people at my child’s special school for his care. If we were to speak out about our true feelings, there would almost certainly be reprisals against our son and ourselves.” Other parents hesitate to make public statements because they depend for ongoing treatment on the same hospital and doctors who saved their child’s life, and they fear alienating their child’s medical caregivers.

The comforting lies (or the failure to tell the uncomfortable truth) are not simply emotional coping mechanisms for many of us. They are practical necessities if we want our children to get proper medical and educational services.

But the comforting lies are in constant tension with the facts of our daily lives, and, as we and our children grow older, cracks appear in the cheeriest facades. “Delays” become “disabilities,” and the struggles we had hoped were temporary are finally acknowledged as permanent and irremediable. Disillusionment and burnout take their toll. In a few tragic cases, we snap—as have several Canadian parents recently involved in mercy killings of their severely disabled children, and as did the Kelso parents of Philadelphia who abandoned their disabled, prematurely born child at a local hospital. A New York Times article about the Kelso case quotes Beth Gage, mother of a handicapped 17-year-old son, who comments with unusual candor: “People put up a good front in public, acting like everything’s hunky-dory, but behind closed doors they fall apart. I can’t tell you how many times I’ve felt like quitting.”

Most of us, fortunately, do not act on our despairing secret thoughts. But behind closed doors, after a few too many drinks, or in the darkened parking lot after a support group meeting, the truth comes pouring out. The conversation begins with the obligatory, “I love my child dearly. I am so grateful to the doctors and nurses who saved him, but. . . .”

Saturday, September 1, 2007

We Interrupt This Broadcast...

Oh my gosh! What a Big Ten football day. The Spartans won! That makes me a happy Spartan. I’ll take my wins where I can get them. I sat through the Muddy Waters' years. But the real shocker is the U of M game. Gosh, almost makes me cry.