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Teacher finds special success

Telegram & Gazette
Wednesday, May 27, 1998

‘Many schools try to give the children as little as possible. We were very concerned. But when we first brought Eric and Aaron here, we could see the Sue saw them first as little boys rather than children with special needs.’ PARENT RICHARD BISSELL

Teacher Susan M. McCullen works with Eric and Aaron Bissell during a preschool class. Photo by Mike Castagnaro
Teacher Susan M. McCullen works with Eric and Aaron Bissell during a preschool class. Photo by Mike Castagnaro

By Chris Sinacola
Telegram & Gazette Staff

GRAFTON – The fact of the matter is that Susan M. McCullen did not have to turn Eric Bissell’s walker into a “bulldozer,” to the delight of all the children in her preschool class.

But she did.

Nor did McCullen absolutely have to make sure that Eric and his brother, Aaron, took part in every class trip, such as over to the South Grafton fire station, and see that they climbed into the driver’s seat of the pumper truck like all the other kids.

But she did that, too.

Certainly, McCullen didn’t have to run to the Bissells’ home last summer to care for Eric while Aaron went to the hospital for emergency surgery.

Of course, she did.

Tomorrow, at a dinner and ceremony at the Ramada Inn in Auburn, McCullen will receive the state Department of Mental Retardation’s 1998 Excellence in Inclusive Education Award, for the preschool/kindergarten level in the DMR’s Region II, which covers Central Massachusetts.

McCullen was nominated for the award by Eric and Aaron’s parents, Cynthia and Richard, who are quick to note that McCullen has included their sons not only in her classroom, but in her heart.

Although the state’s special education law requires that all children with special needs be educated for “maximum feasible benefit,” school systems and parents do not always see eye-to-eye.

“Many schools try to give the children as little as possible,” Richard Bissell said. “We were very concerned. But when we first brought Eric and Aaron here, we could see that Sue saw them first as little boys rather than children with special needs.” Of course, they are both.

Born in July 1993, at just 23 weeks gestation, Eric and Aaron Bissell faced long odds just to survive. Meeting the special medical needs of the twins has meant years of surgeries, treatments, medication, worry, and stress for the Bissell family.

But the little boy part is blossoming.

Following surgery last summer to rebuild his trachea, Aaron is a lively, talkative 4-year-old — his latest projects include mastering the use of the bathroom, an in-depth study of washing his hands, and participating in show-and-tell. Due to cerebral palsy, Eric still has significant problems with his muscles and motor skills, but has made phenomenal progress with verbal skills in recent months.

“Everything lately is ‘That would be nice!'” Cynthia Bissell said. “We ask if he’d like to go to school or shopping – ‘That would be nice!'”

For McCullen, welcoming the Bissell’s into her classroom has been a natural extension of the educational philosophy she adapted at an early age.

“It was in eighth grade that I wrote once ‘I hope to work with children with special needs,’ ” McCullen said. “I’ve always been interested in how all kids learn, particularly the acquisition of language. I do just see kids as kids.”

Her most frustrating days of teaching, McCullen said, were in dealing with nonspecial needs, or so-called typical children, in second and third grade, whose behavior and motivation were often far less than what she sees among the Bissell’s and others.

McCullen’s preschool is a mix of special and typical children – based on the philosophy that exposing the groups to one another builds understanding from an early age, as well as helping to break down barriers and prejudices that exist in the children’s parents.
Grafton teacher succeeds with ‘bulldozer’ approach

Eric uses a special walker with wheels. To help the typical children understand Eric’s situation, McCullen named the walker a “bulldozer,” after the piece of heavy equipment that children find endearing. And it worked. With Eric’s permission, the other children even get a chance to use the “bulldozer.”

The Grafton preschool program offers a morning and afternoon session, and is popular enough that the school system must hold a lottery each year for those families who want their typical children to take part.

John McIntyre, director of family support and children’s services for DMR’s Region II, said that the work of teachers such as McCullen, and the advocacy and dedication shown by the Bissells, are an illustration of how the state, schools, and parents can and should work together.

A generation or two ago, McIntyre said, children with special needs or mental illness were shunted aside, hidden away, and rarely spoken of. Some made it into sheltered work-shops. Attitudes began to change when parents demanded that society do better, leading to the state’s land-mark Chapter 766 legislation in the 1970’s, and the 1990 Americans With Disabilities Act.

Today, McIntyre said, the benefits of inclusion are being widely demonstrated. They are breaking down barriers of prejudice and misunderstanding in adults, and allowing children to see and understand, from a very young age, that children with special needs aren’t scary or strange, but mostly just like themselves.

“This is the next step in a movement that began in Massachusetts on the order of 25 years ago,” McIntyre said. “The idea is that they become full, taxpaying citizens. A lot of these children, as they get to be 14, 15 years old, hopefully the schools will begin a transition program with them. The idea is that they get invited to birthday parties, that they become part of the neighborhood. I think the community is enhanced when we embrace kids with disabilities.”

McIntyre said the awards program, now in its second year, has provided a focus for the good work being done all over the state. A group of parents reviews applications for the awards, interviews the nominees, and votes on who the recipients will be.

For the Bissells, the experiences of the last few years have been a rigorous test of their love for one another and the strength of their family. They are passing those tests, in part by reaching out to other parents and the medical community with advice, information and support. Their anger and despair have been transformed into action and hope, they said.

The couple helped start Families Organizing for Change, a statewide support group for individuals with disabilities and their families. Richard is now executive coordinator for Central Massachusetts, and writes for the organization’s newsletter “Compass.” Cynthia works with the Family Health Support Project at UMass/Memorial Health Care.

Like many parents, their work at home is never done, but they also have begun to expand the scope of their concerns, exploring the many issues involved in helping society as a whole do right by those in greatest need.


More on the Excellence in Inclusive Education Award from our local paper, the Grafton News.

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Inclusive Education Award!

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Congratulations to Susan McCullen from Edward and Yvette Ropiak and Daniel Kimberly and Nicole McCullen! Susan’s family is proud to announce, that she was awarded the state Department of Mental Retardation’s 1998 Excellence in Inclusive Education Award,” for the preschool/kindergarten level in the DMR’s Region II, which covers Central Massachusetts. She was presented with the award at a dinner banquet held on May 28,1998 at the Ramada Inn, Auburn. Susan was nominated for the award by Cynthia and Richard Bissell, parents of 4 year old twins, Aaron and Eric. Due to premature births (at 26 weeks gestation), the boys have a variety of medical and developmental special needs. Eric has been diagnosed with cerebral palsy. Aaron had a Tracheostomy, which has since been repaired. In addition to surgeries, medical treatment and therapies, the boys are serviced in Grafton’s integrated preschool program for which Susan McCullen is the teacher. Being an integrated preschool, the groupings consist of some children with special needs, and more than half of the children are those with “typical development” or no special needs. The benefits of such inclusion are numerous. Most importantly, all children have a right to be educated with their peers. From an early age, children such as the preschoolers – learn to celebrate each other’s differences and yet realize how much they’re also a like. Those with special needs also benefit from inclusion with peers, as children learn so much from each other, especially language and social skills. Susan enjoys working with all children, as well as forming partnerships with their parents. Congratulations Susan on receiving this prestigious award!

Richard is the executive coordinator for Families Organizing for Change of Central MA, a statewide support group for individuals with disabilities and their families and Cynthia works with a Family Health Support Project at UMass/Memorial Health Care.

Photograph includes (from left to right) Richard Bissell, Dr. Johanna Van Houten - Superintendent of Grafton Public Schools, Susan McCullen, Margery Gagne-Director of Special Education, Cynthia Bissell, and Anthony Cipro - SGES Principal.
Photograph includes (from left to right) Richard Bissell, Dr. Johanna Van Houten – Superintendent of Grafton Public Schools, Susan McCullen, Margery Gagne-Director of Special Education, Cynthia Bissell, and Anthony Cipro – SGES Principal.
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A program for disabled children to lean on

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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.

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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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