Brittany Schettler - Life As We Know It: A Father, a Family, and an Exceptional Child

Brittany Schettler 3044200

EDUC 2530-­‐005 Inclusive Approaches to Teaching Exceptional Students

March 13, 2014

Book: Life As We Know It: A Father, a Family, and an Exceptional Child

Life As We Know: A Father, a Family, and an Exceptional Child by Michael Berube is a biography published in 1996. This book is an interesting biography that includes personal ideas and thoughts towards society. Berube writes about his son James, who was born with Down syndrome. Berube brings to life the struggle of parenting a child with Down syndrome while describing his son’s journey. From a readers point of view Berube’s story is enlightening and thought provoking.

To give an overview of the text, Berube starts off introducing his wife Janet and himself as Professors of English in Illinios. Berube describes his experience becoming a father for the first time with his son Nick. He recalls thinking that the second child won’t be as dramatic and surprising as his first. This changes when Berube wife gives birth to a child with Down syndrome. James’s birth was a complicated delivery. James was in the intensive care unit for three weeks and ranked up a bill of 30,00 US dollars. As a baby, James had no emotion, he didn’t cry and his eyes were closed. The American health care system is analyzed and reflected on (Berude, 1996).

Berube describes the next four years as a struggle, but he won’t have it any other way. A discussion was included about allowing people to make there own decisions when using prenatal testing. Continuing on, Berube described James in his first month being tube fed and monitored on a cardiac monitor. As James grew he had a neck issues, which lead to intense physiotherapy. Occupational therapy, massage therapy, physiotherapy and speech therapy was a weekly routine. James would also get sick easily. Berube writes that James first sound was an “oooing” sound (Berude, 1996).

At seven months old, James had the body of a six month old and the physical movement of a three month old. Berube describes his experiences of going to appointments and having to be absent from work. When James was three he started using sign language with his brother Nick and began to communicate verbally when four years old. Berube describes James having problems with his gross motor skills but later began to walk. Near the end, Berude discussed the education system and how Janet and he would need to pick the best route for James. Berude concludes that as parents they wouldn’t have chosen another path. They believe in doing onto others, as you would have done onto yourself (Berude, 1996).

Throughout the book, many of the issues and views described by Berube were U.S. based. This made it difficult to agree or disagree with his options. However, I would agree that the US health care is very detrimental to many families that have health problems. I could agree with Berube’s views on third party objectors. He states he wouldn’t judge anyone doesn’t expect to be judged in return.

I feel that Berude includes too many additional discussions around several topics, such as fetal testing and government school systems. At many points in the text James’s story is lost to the additional facts and Berude’s personal views. The description of James’s life struggles could have been focused on more. The book I felt was an interesting biography, but was a bit bias. It also was difficult to follow the story line when jumping from past to present.

As a reader this book changed my view on exceptional persons with Down syndrome. I found this book to be very eye opening to the physical and psychological hardships to both the parents and the child. Berude’s description of James’s intense crying episodes from physiotherapy on his neck was very emotional. The amount of pain and distress put on a child with Down syndrome is immense. Another part of Berube’s life that had an effect on me was the part about both parents struggling with their jobs and personal lives. Their lives were put on hold for their two sons. From reading this book with little insight on Down syndrome, my eyes were opened to the penetrating journey many embark on.

Similarly, my viewpoint on Down syndrome had dramatically changed. From having little knowledge on the subject, my interest and outlook on children with Down syndrome has been amplified. Berube believed his child was capable of learning and progressing at the same rate as any other child. This I feel this is important to understand after reading this book. The drastic amount of appointments and emotional events such as finding out James was mildly deaf increased my view of personal hardships. My opinion of parents with exceptional children has vastly elevated. I feel that more can be done in society and schools to incorporate children and adults with Down syndrome.

To conclude, I would recommend this book to parents of a child with Down syndrome. It is also a good read for parliament members in the US, as many financial hardships are addressed. I would also recommend this book to teachers who have a Down syndrome student in their class. Readers can gain a new perspective on Down syndrome or be reminded again of the challenges people face.

Many of the personal challenges of the parent and child with Down syndrome are misunderstood in society. Berube biography reminds us all of individual differences and the potential each and every person has. I would advise readers to prepare to be challenged, and to embrace the journey Berube takes you on. Overall it an insightful and a gratifying read.

Berube, Michael. Life as We Know it: a Father, a Family, and an Exceptional Child.

Virginia: Pantheon Books. 1996