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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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Two Precious Gifts

FATHERS’ VOICES
Trading old dreams for new ones.
By Richard Bissell

New Dad Richard Bissell holds his double blessing, sons Aaron and Eric in the Neonatal Intensive Care Unit.
New Dad Richard Bissell holds his double blessing, sons Aaron and Eric in the Neonatal Intensive Care Unit.

I had just taken a bite of my turkey sandwich when my wife, Cindy, came in the front door. I could tell she was fighting back tears. “It’s Eric,” she blurted out and broke down.

We had premature twin babies in the Neonatal Intensive Care Unit (NICU). Born after only 26 weeks, they weighed a mere two pounds each. They had been in the hospital for close to six weeks, fighting for their lives.

I waited for Cindy to calm down enough to tell me what was happening. I needed to know, but at the same time I was afraid to hear. My mind reeled as she gave me an explanation I couldn’t really comprehend. I felt as if the breath had been knocked out of me. There was a tightness in my stomach and chest. The official diagnosis was periventricular leukomalasia with intracranial hemorrhages. I felt trapped by the words-fancy words for the type of brain damage that leads to cerebral palsy. It was all so hard to believe.

“It’s all right,” I began. It was hard to move my mouth. “It will be all right. We will work it out.”

Working it out

We had been splitting shifts at the NICU. Cindy stayed during the day; I did the night shift. We are both nurses at the same health care facility. Our employer had been very understanding, working out our schedules to give us as much time as possible with our babies.

Robotically, I made my way to the NICU. It was 11:00 PM. The hospital was quiet and the lights were dim. Glancing at the babies in the “Growing Preemie” section, I wondered if my sons would ever graduate to this haven where stable infants wait to go home.

The NICU was busy, as usual. Doctors and nurses walked briskly between incubators, checking IVs and respirators, turning off alarms and discussing treatments with one another in hushed voices. I greeted some familiar nurses and walked into the room our boys shared with 10 other incubators. All the fragile infants were enclosed in their plastic “houses” with each baby’s name on the side.

Our boys had a multitude of problems, mostly related to prematurity. Very susceptible to infection, their bodies could not regulate their own temperatures. They could not be handled much because of raw, immature nervous systems. Some days all we could do was reach in through holes in the incubator sides and lightly touch their heads. On good days, we could hold them very gently for five or 10 minutes-very difficult conditions for normal parent/child bonding.

I sat down next to Eric’s incubator and peeked in. A tiny bundle, he was sleeping peacefully, breathing on his own now with a nasal cannula taped to his nose for extra oxygen. He was hooked up to monitors to alert the nurses if he stopped breathing or if his heart rate dropped, both of which happened many times a day. The nurses would rush over and calmly shake him, a little “reminder to breathe.” It had taken us a while to accept this routine.

I stuck my hand through the porthole of Eric’s incubator and lightly touched his head. He stirred slightly, then went back to sleep. As I sat there, I thought of the necrosis (tissue death) and bleeding in his tiny brain. I walked over to Aaron’s incubator, located right next to Eric’s. Still on a respirator, he was too weak and fragile to breathe on his own. Looking at my sons, I had many mixed emotions: anger that they were not healthy and strong; fear and sadness because they were so sick, fragile and vulnerable. Mostly, however, I felt an intense love and desire to protect them from harm.

It was so difficult to stand by as they were bombarded by constant prodding and probing required for a multitude of medical procedures. Their tiny heels were black and blue from multiple blood tests. IVs were repeatedly stuck in their little arms. Even eating was an unpleasant task: Tubes stuck down their throats allowed Cindy’s breast milk to be poured into their stomachs.

Patterns of crisis

We seemed to get into a pattern of good and bad days. Usually every few days brought a crisis with one baby or the other. Two steps forward, one step back; sometimes the other way around.

Aaron’s most difficult time came when he was taken off the respirator. It was so hard to watch him struggle for every breath, his little eyes wide with fear. His windpipe was inflamed and scarred by the respirator that had saved his life. Eventually, we decided to take him to see a throat specialist for an evaluation and possible tracheostomy. Leaving Eric at the “home base” hospital with relatives, we followed the ambulance to another hospital. We met with the surgeon, then helplessly watched as Aaron was transported into surgery. Each passing minute seemed slower and more frightening than the last as we waited-keeping in constant touch with “home base.” Finally the surgeon called us, “We had to do a tracheostomy, but he did just fine. You can see him when he’s out of recovery.”

It was then that we realized how strong Aaron is. He has a tremendous will to survive. After the surgery, seeing him with a tracheostomy was upsetting, but, at the same time, we were relieved that he looked so comfortable. He was at ease for the first time in weeks, neither having a tube down his throat nor having to struggle to breathe. With both boys so unstable, however was difficult to see any light at the end of this long tunnel.

The tunnel’s end

Eric and Aaron, now four years old, are busily at work dyeing Easter eggs with their dad, Richard.
Eric and Aaron, now four years old, are busily at work dyeing Easter eggs with their dad, Richard.

The boys at four now weigh in at around 30 pounds each. Aaron breathes through a tracheostomy tube and has some residual respiratory problems, but in all other ways he is like any other toddler, exploring and examining every new object as if it is some scientific breakthrough. Unable to vocalize, he makes all kinds of interesting creative noises and grins at his own cleverness.

Eric is certainly his own little person. Because of spastic quadriplegia cerebral palsy, he receives intensive therapy four times a week. He is unable to sit up or crawl, and even has trouble rolling over. His smile comes easily, however, and he is a happy boy. I can see the intelligence in his eyes.

The twins have strengthened us and they have taught us what is really important in life. When we had learned that Cindy was pregnant with twin boys, I had had dreams of big strapping football players: the first twins in the NFL! We would do so much together-run, bike, watch the games on Sundays. All these dreams disappeared when I had to face what I saw then as a grim truth.

Although things have calmed down a bit, we still have good days and bad days. More challenges lie ahead. But I wouldn’t trade our boys for Super Bowl Twins! As I wrestle and play on the floor with them, many of the bad memories fade.

I look at them now and think back to that terrible summer night when Cindy went into premature labor. I realize how truly lucky we are to have these two special gifts. I know now that I do not have to give up all my dreams for the twins. I just let them create new ones. EP

Richard Bissell and his wife Cindy are nurses and work together at the Newton and Wellesley Alzheimer Center. They live with their twin sons, Eric and Aaron, in Grafton, Massachusetts.

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