Running Head: The Joys and Struggles of Knowing Jesse

The Joys and Struggles of Knowing Jesse

Shannon N. Stommes
Franciscan University of Steubenville

The Joys and Struggles of Knowing Jesse

Marianne Leone is an actress, screenwriter, essayist, wife, and mother to a child with
cerebral palsy. Born in Massachusetts in 1952 to an Italian immigrant, Marianne developed a
very straightforward, talkative, dramatic, and hardworking attitude. While attending theater
classes at college in New York she met her beloved husband, Chris Cooper, and married him in
1983. Although their acting careers were very demanding and required them to travel all around
the United States and Europe, Jesse was born when they lived in Hoboken, N.J. Only the summer
before Jesse would begin first grade did the family decide to leave the city and move to their
permanent home in Massachusetts.
In Mariannes book, Knowing Jesse, Marianne writes about her life with the struggles of
fighting for rights for her son, the joys he brought to her and her husband, as well as the
enormous sadness of their sons death. The chapters are a mix of what life was like when Jesse
was alive and after he had died. Mariannes writing is heartfelt, uplifting, and sometime inflamed
with emotion. She expresses her exact feelings so that the reader feels like he or she is in the
situation. Marianne keeps the reader interested and guessing what will happen next. However,
some of the chapter seemed to me out of place. While reading Knowing Jesse it was difficult for
me to make a visual timeline of the familys life events and the order in which they happened due
to the authors writing style.
The Cooper family lived a life full of doctor visits and their opinions. After taking Jesse
to a number of specialists, they were told that he would never be intellectually normal.
However Marianne would only add on to that by saying he is not intellectually normal he is
intellectually superior. Although she was often given the label as the overprotective parent,
Marianne would not let her son be treated with anything short than the dignity he deserved.
Many time her writing expresses how people seemed to label her child. They would refer to Jesse

The Joys and Struggles of Knowing Jesse

as a CP kid, one-of-those-kids, the disabled child, etc. All of which were sadly used by
professionals when they should have used people first language. This and many other factors
influenced the Cooper family to change programs, school, and even move to another state in
order to ensure basic learning rights for Jesse. Under the Individuals with Disabilities Education
Act he has a right to a free and appropriate public education.
Marianne, in the earlier years of Jesses life, worked at home while caring for her son.
Her husband, Chris, was often away shooting for a number of movies but when he was home he
would support and aid his wife in caring for Jesse. The family caregiving roles also shifted when
the Cooper family hired their first family help, Bernadette of Athy. Bernadette stayed with the
family for almost five years. She was a kind, Irish woman who, when first seeing Jesse, cried,
Oh! Isnt he gorgeous! She went everywhere with the Cooper family including doctor
appointments, therapy sessions, early intervention classes, on movie sets, and on vacations.
Suzanne was the second family aid but the first to live with the Cooper family. From Scotland,
she fit in very well with the family and would even join them for movie nights. After Suzanne,
Brandy was the next caregiver to enter and stay in the Coppers lives. Brandy played a huge role
in Jesses life. She became his personal aid at school (after much legal debate) and taught him so
much even to the extent of grooming. She sent him to school every morning with his cow-licky
fine hair spiked and gelled. Brandy was also a tremendous help to the family when Jesse had
seizures. All of these aids were extremely important to the Cooper family and became part of it.
They were there to support and provide extra help that the Cooper family needed to function.
Marianne and Chris did everything they could to make Jesses life normal. They attended
to Jesses physiological needs, safety and security, love and belonging, self-esteem, and selfactualization needs. When people would stare at Jesse, Marianne would loudly say, Jesse!

The Joys and Struggles of Knowing Jesse

Youre so handsome, people cant take their eyes off you. They brought Jesse everywhere
including fancy restaurants, coffee shops, amusement parks, concerts, and plays. Jesse was
encouraged to read famous books and even began writing poetry at the age of ten.
Jesses disability did challenge Marianne to think of her own childhood and how she
was once slightly prejudiced against individuals with special needs. In addition, throughout her
life Marianne struggled with the fact that she felt her son belonged to the social worker at the
early intervention center, the occupational therapists, orthopedist, and the neonatologist. She
recalls having many struggles and becoming very angry with these specialists who did not see
her child as she did: an individual child of God. Marianne also stated how much she hated the
seizures that Jesse would suffer. They took Jesse to a number of Specialists who recommended
drugs that simply did not work or negatively affected him.
When Marianne writes about early intervention she makes it clear that there were many
problems that came with it. Finding the right program and the right professionals to work with
Jesse was challenging. The early intervention center consisted of physical therapists, speech
therapists, occupational therapists, instructors and social workers all provide free by the
government. It seemed like much need help for Marianne but she soon became disappointed
when these programs were not family-centered practices. Jesse cried through the first full session
and she felt as if she could do nothing. She felt uncomfortable with how rough her son was
treated during the therapy sessions and wanted the freedom to actively participate in the sessions.
In later sessions she was one again called the overprotective mother and was told that Jesse
had to do things on his own even though it was impossible. For example when Jesse was told to
do a puzzle he was having problems gripping the pieces. Instead of the intervention center
making adjustments to the task, Chris had to glue on nobs to the pieces himself.

The Joys and Struggles of Knowing Jesse

As Jesse grew older the battle for full inclusion continued. Marianne writes about the
constructing of an Individualized Education Program for her son when he was in first grade. The
IEP team simply handed her the finished IEP and told her to sign it. This is not at all how an IEP
should be constructed. Parents should be an active member of the team. Marianne was told by
Jesses first grade teacher that he belonged in a separate class and that his crying was a
behavioral issue. When in fact, Jesse was not receiving the proper care and was crying because
he was sitting in his wheel chair for hours. Furthermore, when Jesses IQ was evaluated, he was
given a standard Stanford-Binet IQ test with no adaptations for his disability. Leading to Jesses
failure of the test and the results were inaccurate to his true IQ. These problems were all fixable
but were used by the school to place Jesse in a separate class. This was a violation of the school
on Jesses learning rights.
Knowing Jesse was an eye-opening book to what families with children who have
disabilities may experience. The relationships that the Cooper Family had with the early
intervention workers, school districts, and family aids can be helpful to the reader. Some of the
situations that she described I found very heart-breaking and frustrating, but nonetheless was
important for me as a future educator to learn from it. I would say that all educators should read
this book and that it also could be very beneficial to parents who have children with cerebral
palsy. By reading this story parents will know that they are not alone and that there are many
things they can do to help their child learn.