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A Matter of Perspective

rehabA Matter of Perspective

by Cynthia Bissell

Seventeen weeks into my pregnancy, an ultrasound revealed that our first “child” would be twins! Our excitement and anticipation were short-lived, however. Eric and Aaron were born at 26 weeks gestation–three and a half months too soon.

Our lives as parents certainly got off to a rough start, as did the lives of our boys…

Our lives as parents certainly got off to a rough start, as did the lives of our boys, who were immediately whisked off to the neonatal intensive care unit (NICU). When we finally got to visit them, it was difficult to see our babies among all the tubes and wires. They looked like tiny albino monkeys, covered with fine blond hair.

The boys spent the next three months in the NICU, a stressful roller coaster ride that can be truly understood only by other parents of “preemies.” Both boys had many of the problems common to prematurity, including hypotension (abnormally low blood pressure), respiratory distress syndrome, intracranial hemorrhages (bleeding in or around the brain), retinopathy of prematurity (an eye disorder), patent ductus arteriosus (a condition in which oxygenated blood flows back into the lungs rather than circulating to the rest of the body), hyperbilirubinemia (jaundice) and anemia.

Eric’s most serious problem was bilateral periventricular leukomalasia (PVL), a condition in which tissue around the brain’s ventricles (chambers in which cerebrospinal fluid is made and circulated) is damaged due to insufficient blood flow or lack of oxygen. Eric has spastic quadriplegic cerebral palsy as a result of his brain injury. Aaron needed a tracheostomy because of acquired subglottic stenosis (a narrowing of the area beneath the vocal cords and the opening between them), an unfortunate result of his earlier need for a breathing tube. Because of damage to his lungs and airways, he also had bronchopulmonary dysplasia, a chronic condition that would always affect his breathing. Aaron has more recently been diagnosed with asthma and attention deficit hyperactivity disorder (ADHD).

The Bissell Family: (left to right) Aaron, Cindy, Eric and Rich
The Bissell Family: (left to right) Aaron, Cindy, Eric and Rich

The twins are now 5 years old and the trauma of the NICU has gradually faded. It is amazing to me where the twins have taken our family over the past 5 years. When the boys first came home from the hospital, I was often housebound caring for two sick, fragile infants. I turned to the Internet for information and support. My computer became my link to the outside world. I began building web pages as a way to network with other families and share our experiences. Since my husband Richard and I are both RNs, we had a bit of an advantage caring for sick babies. One of my web pages (Aaron’s Tracheostomy Page) has become the leading tracheostomy resource on the Internet. Networking with other parents around the world who are dealing with similar issues as our family was extremely therapeutic, and it not only helped us to work through our past experiences, it also is helping us face the many challenges ahead. Our home page is at www.bissells.com.

The twins hectic schedules of therapies, doctors’ appointments and surgeries made it difficult to work a regular job. In December of 1996, I got an opportunity to work on an experimental grant project that has afforded me a more flexible schedule. The Family Health Support Project is a Department of Mental Retardation (DMR) / University of Massachusetts collaborative project in which family members and self-advocates have been hired as part of the medical team. I currently work in pediatric neurology at University of Massachusetts Memorial Health Care, were I help families advocate for their child with special needs and at the same time, help the medical teams understand the needs of families and foster family-centered care.

Once the boys’ health issues began to stabilize, Richard and I were able to begin networking in our own community. We attended our first Family Leadership Series in 1997. The Leadership Series is sponsored by Families Organizing for Change (FOC). FOC is a statewide, grassroots coalition of families with children and adults who have disabilities and/or chronic illness. The Leadership Series is a six-day series, which teaches families about leadership and advocacy. Now, two years later, Richard is the Regional Coordinator for Central Massachusetts FOC.

We Have learned that “problems” are all a matter of perspective.

In just 5 short years, the twins have completely changed our lives. We have changed careers, met new friends and we have become advocates for people with disabilities. We have also developed different philosophies and new perspectives. The twins have taught us about strength, endurance, patience, and about what is truly important in life.

Richard and I are often asked how we manage, having two children with special needs. Well, we have learned that “problems” are all a matter of perspective. We discovered this back in the NICU when we were told that Eric had PVL and Aaron would need a tracheostomy. We were paralyzed with worry and fear, but gained some insight on our own situation by observing two other mothers. One woman was upset because one of her twins was temporarily under an oxygen hood; the other was despondent because one of her twins had died. All of us were grieving from different perspectives. We realized that although things could be better, they could also be much worse.

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In ‘Dougie’s Corner’

The MetroWest Daily News
Monday April 12, 1999

Doug Flutie Jr., 7, sits with his grandmother, Agnes Fortier in "Dougie’s Corner," as Doug Flutie signs an autograph for a fan, following the dedication ceremony of the new autism resource center at Natick’s Morse Institute Library yesterday. Photo by Judy Royster
Doug Flutie Jr., 7, sits with his grandmother, Agnes Fortier in “Dougie’s Corner,” as Doug Flutie signs an autograph for a fan, following the dedication ceremony of the new autism resource center at Natick’s Morse Institute Library yesterday. Photo by Judy Royster

By Deanna Zammit
News staff writer

NATICK – Buffalo Bills quarterback Doug Flutie and his son, Dougie, yesterday cut the ribbon at “Dougie’s Corner,” the Morse Institute Library’s new autism resource center in Natick.

“Hopefully, we’re going to make a difference in awareness,” said Flutie, a Natick resident whose 7-year-old son was diagnosed with autism three years age, “because God knows we all need it.”

The new center on the library’s second floor is one of three autism resource centers in the region, and the only one in MetroWest. The center houses more than 200 educational items, including videotapes, information packets, an Internet-linked computer and 120 books new books on autism.

“This is the best thing in the world,” said Lisa Clover, whose son Andrew has autism. “When Andrew was diagnosed three years age, there was nowhere to go. At that I think I lived on the Internet.”

The Center, which has been in the works for a year, is the result of a collaborative effort by the library, the Flutie Foundation and The Family Voice.

The Family Voice, a support and advocacy group for children with autism and their parents, approached the library about a year ago to house some of it’s research books. Soon after, the group presented the library with a grant. A $10,000 pledge from the Flutie foundation followed.

The foundation money will be donated to the center over a period of several years, and the library will use it to update books, videos and other materials and incorporate educational programs about autism for the public.

Photo by Judy Royster
Doug Flutie stands with 7-year-old Dougie as he welcomes guests to the dedication of “Dougie’s Corner,” the new autism resource center at Natick library. Also attending the ribbon-cutting ceremony dedicating the corner were Flutie’s daughter Alexa, 11, and wife Laurie. Photo by Judy Royster

“They just have a lot of good information,” said Chris Campbell, whose son Richie has autism. “Because this is an ongoing thing. We’re constantly learning new things about autism and you really have to keep up to date.

The Center’s committee, composed of members of the library, the special education departments of public schools, and the Higachi School for children with autism, will determine which new materials should be included to fuel public awareness.

“We were really surprised how much fear we found and that our children weren’t really welcome into society,” said Rich Bissell, a member of Families Organizing for Change, an advocacy group for families with disabled children.

His son Eric has cerebral palsy. Eric’s twin brother, Aaron, has developmental disabilities.

What Dougie’s Corner is doing it “letting people know that children with disabilities are people first, are children first,” Bissell continues.

Clara Claiborne Park, the Autism Awareness Day’s keynote speaker and author of “The Siege,” defined autism through her experience of raising her now 40-year-old daughter, Jesse.

“Autism is when your 2-year-old daughter looks straight through you to the wall behind,” said Part, “Autism is when your 11-year-old daughter fills sheet by sheet with long division. Division by three, by 11, by 17.”

Park described her involvement with her daughter’s development as a siege, “because it was like assaulting a walled city.”

Today, Jesse is an accomplished artist whose brilliantly colored paintings of architecture incorporate the autistic person’s demand for precise detail. One sold for $1,000, and her mother is hoping for a New Year City art show.

She also works 27 hours per week in a college post office.

Park was quick to remind the audience that all this did not come overnight. The siege was long.

Educating a child with autism is a lifelong building block process. When Park started there were no resource.

There was no special education.

There was no autism resource center.

When you child is diagnosed with a disability, “You have to give up a lot of dreams,” said Bissell, who once dreamed of having the first set of twins in the NFL.

“And then create new ones,” his wife, Cindy, chimed in.



Bissell’s Meet Doug Flutie

Eric and Aaron Meet Doug Flutie!
Eric and Aaron Meet Doug Flutie!
Rich and Doug talking football
Rich and Doug talking football
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Home, Sweet Hospital

The Boston Globe Magazine
Mind and Body / By Richard Saltus
June 7, 1998

homecare

Although he needed tube feeding, constant oxygen, treatment for seizures, and round-the-clock attention, Scotty Luce spent the last six years of his short life at home.

Scotty’s parents, like an increasing number of parents today, took on the immense task of rendering hospital-like care at home — aided by doctors, nurses, therapists, and others involved in the rapidly growing world of pediatric home care. Their reasons are similar to the one Scotty’s mother, Patricia Luce, gives: “He needed a home environment — it was important for him to have a mom, a dad, and a dog.”

Scotty, who had a rare genetic condition that afflicted nearly every organ in his body, died in 1996. He made it only to age 12. He slept in a hospital bed and used a wheelchair; a line for nutrition led into his heart, and other tubes led to his stomach and intestines. He was cognitively impaired. Altogether, he was “medically fragile” — a description of infants and children so ill that they are living on the edge, and often only with high-tech life-support equipment.

As more and more infants survive extreme prematurity or illnesses that would have killed them in the past, families are facing the question of caring for them after the immediate crisis passes. “There’s a lot of high technology that didn’t exist in the past, and so I think as a result of that, we have a new breed of children that exist in the World today,” says Patricia Luce, who lives in Worcester. She has founded an initiative called Family Partnerships, to assist families in pulling together the sometimes widely scattered resources needed for successful home care.

Until fairly recently, children with chronic, severe conditions requiring expert care and specialized equipment “remained in hospitals and institutions, because there was no support for families or financial support to have the child go home,” says Dorothy Page, a family nurse practitioner who heads the pediatric homecare program of the University of Massachusetts Medical Center, in Worcester. She is also president of the National Association of Pediatric Home and Community Care, which she founded along with a UMass physician, Robert G. Zwerdling. The association is involved with education and research on home care of children and with setting standards.

The move toward bringing medically fragile children home stems in part from activist parents who pressed public agencies to help make home care possible. Federal Medicare and federal-state Medicaid reimbursement policies swung toward home care as new technologies and training of parents made it not only possible but cheaper for these children to stay at home. The newly available money, in turn, prompted a home-care industry that had already grown up around geriatric needs to diversify into pediatrics.

A broad range of medical conditions afflicts the infants and children who are being cared for at home. They include lung problems caused by prematurity or, sometimes, by the respiratory treatments for prematurity. Many of these children have tracheostomies — openings through the neck into the windpipe — through which they are connected to ventilators. The tracheostomies need constant attention.

There are children with infections that demand long courses of intravenous antibiotics and young cancer patients on chemotherapy. Other children can’t eat, and they get all their nutrients through tubes. The care of such youngsters can be complex, demanding, and tiring, and the impact of the entire venture on the family is enormous.

“The stress and disruption of your life is indescribable,” says Cynthia Bissell, mother of twin 4 1/2 year-old boys, Eric and Aaron, who were born 3 1/2 months premature and suffering multiple disabilities. Aaron had a tracheostomy and was on a ventilator until last summer to help him breathe.

“We live in a town house, and we had what was like a mini-NICU [neonatal intensive care unit] set up in our living room,” Bissell says. “We had nurses, physical therapists, occupational therapists, speech therapists, caseworkers, coming in and out of the house all the time. There is no privacy.”

Today, the twins attend a special-needs preschool. Eric, who has cerebral palsy, uses a wheelchair, and Aaron is receiving therapy for his speech, which was delayed because of the tracheostomy.

Even though Bissell and her husband are both nurses, she says they were initially intimidated by all the procedures they had to learn. “But you’d be amazed at how quickly parents become experts in their kids’ care,” the Grafton mother says.

Like Luce and like other parents who make such a huge commitment, the Bissells believe the rewards of caring for medically fragile children at home are great. “We feel very strongly about this,” says Bissell, who has founded a group called Families Organizing for Change that is funded primarily through the state Department of Mental Retardation. The group is aimed at generating support for families caring for children at home.

Besides DMR, other agencies involved in home care include the state Department of Public Health, Medicaid, the Massachusetts Commission on the Blind, and various private groups. Family Partnerships, in Worcester, can be reached at 508-756-7467. The National Association of Pediatric Home and Community Care, in Worcester, is at 508-856-1908.

A World Wide Web site established by Cynthia Bissell offers information about caring for children’ with tracheostomies. It is called Aaron’s Tracheostomy Page, and the address is www.tracheostomy.com.

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A program for disabled children to lean on

febctp

Because of their tender age, disabled children need so much more than special medical care. That’s where the Family Health Support Program, a collaboration between UMMC and the Massachusetts Department of Mental Retardation, comes in. Staffed by two family health supporters who are personally experienced with the challenges of disability, the program provides resources, referrals and, just as often, an ear to listen and a shoulder to lean on.

While similar programs have been developed by parents in the past, “Ours is the first to integrate parents of disabled children and disabled ‘self-advocates’ into the medical team,” says Martin Young, PhD, associate professor of pediatrics and program co-director. The program was launched a year ago with a pilot in the division of pediatric neurology. Beth Rosen, MD, assistant professor of pediatrics and neurology, is the program’s lead physician. After completing a medical exam, she introduces one of the family health supporters to the child and parents. The health supporter speaks with the family to make sure all their questions regarding the medical visit and prescribed medical care are answered; she further asks if they need help with other concerns, such as special education, respite care, special equipment and therapies.

“We address anything and everything. And if we don’t have the answers, we know where to get them,” says Family Health Supporter Cynthia Bissell, the mother of twins with special needs. She and fellow Family Health Supporter Sandra Milyko have found that support groups and community support are critical components.

fhsp

Milyko, who has cerebral palsy, also specializes in counseling families on self-advocacy. “Self-advocates are people learning to stand up for themselves in getting basic things – from jobs to health insurance to personal support – that most people take for granted,” she explains.

At the same time they are assisting families, family health supporters are educating the medical staff. Says Rosen, “Cindy and Sandy have been well-received by patients, and have informed me and other providers about what’s available outside of UMass.”

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