Down syndrome from a father's perspective.

Down syndrome Book Review – Far From the Tree

“Sometimes, people end up thankful for what they mourned. You cannot achieve this state by seeking tragedy, but you can keep yourself open more to sorrow’s richness than to unmediated despair.” – Andrew Solomon

I am not sure how it is at your house but at our house we all sit in the same spot at the dinner table. When I am seated at the table I have Lindyn directly to my right and Treyton directly to my left. Sometimes as I raise a bite of food to my mouth or begin to take a drink of water I will notice out of the corner of my eye that I have a shadow doing the same thing. That shadow goes by the name Treyton and there is very little that I do that he does not imitate. Even when he is not imitating me there are things that he will do on his own that Leigh Ann will point out are things that I would have done. Treyton seems to be the living illustration of the old saying, “The apple doesn’t fall far from the tree.” Yet, the fact that Treyton has an extra copy of the 21st chromosome is something that will forever differentiate the two of us. This is the reality that every parent and child with a disability must learn to navigate. Having a child with Down syndrome can be a challenge for a father but it does not need to be a problem, it can be an opportunity for growth.

As seen on TV

Have you seen the products on the store with the label “As seen on TV”? Well, this book review should read “As heard on NPR” because that is how I heard about this book. I needed to get away from the office one day so I ran through a drive-through and then sat in my car to eat lunch. I should point out that I don’t think I would have ever heard about this book had it not been for the circumstances the lead to me hearing about it on the radio that day. You can call it luck but it seems to me that there was some type of involvement here with God’s sovereignty. Far From the Tree: Parents, Children, and the search for identity. By Andrew Solomon

My subscription to satellite radio recently expired and I didn’t have the cash in the bank to renew it so I was forced to find something to listen to on regular radio, I settled on NPR. I do enjoy many of the shows on the station but on that day I heard the words “Down syndrome” as I tuned in and I was hooked.

As I continued to listen I discovered the host was interviewing Andrew Solomon about his new book called Far From the Tree. I did not get a chance to listen to the entire interview but I was able to get a feel for what the book was about. It was about parents raising kids that do not fit the mold of what society calls normal. The real clincher for me was that there was a section of the book devoted families impacted by Down syndrome.

Book overview

Far From the Tree: Parents, children, and the search for identity was written by Andrew Solomon and released in November of 2012 by Scribner Books. The author begins by describing the difference between vertical and horizontal identities. These “identities” are the means by which we define ourselves and others. A vertical identity refers to the traits and values passed down through the generations – this can include DNA. A horizontal identity comes from the attributes and characteristics that are foreign to the parents causing the child to get an identity from a peer group.

When a child has an identity that is different from the parent there is a tension that presents itself. It is “normal” for parents to want kids to be like them but when there is a significant difference as in cases when a disability is present it can be extremely unsettling. Disabilities tend to expose family flaws especially when there is not a strong intimacy between the parents to begin with. Let’s face it, when two people decide to get married they will often discuss their views on religion and politics, the number of kids they would like, the type of house, etc. But no one talks about what they would do if they were to have a disabled child. No one is prepared.

Solomon uses his own life experience to set the stage for the rest of the book. He uses it to create an understanding for the differences between vertical and horizontal identities as well as for a basic understanding of what families with “exceptional” children go through. I am convinced that had the author had any other type of experience growing up that he would not have been able to write this book.

Moving on from his experience as a child the author investigates ten different horizontal identities that are common in society today. These include:

    • Deafness: There is a strong culture in the deaf community. If given the chance to gain the ability to hear many would not choose the option. The language barrier between hearing parents and deaf children is extremely challenging for both.
    • Dwarfism: This is one of most difficult disabilities for a doctor to communicate to parent. One father tells how brazen strangers were as they did not hesitate to ask questions about his child that was born with dwarfism. It is not something you ever get over. Dwarfism is you but you are not it; that is an important distinction for any disability.
    • Down syndrome: One in every ten families is affected by Down syndrome. There are many ways that DS can impact a child but the only common factor among all is the cognitive issue. The United States has a terrible history in terms of how people with DS were treated. Forced sterilization was upheld by the Supreme Court until the late seventies.
    • Autism: The frequency of autism is increasing. It is a spectrum disorder so there are many levels. There are a lot of assumptions made about autism.
    • Schizophrenia: Manifests in late adolescence or early adulthood which can be very difficult for family members because it seems like the loved one you once knew no longer exists even though they look the same. The Los Angeles county jail has the largest population of schizophrenic¬†people in the United States.
    • Severe/multiple disability: This can be very isolating for parents and other caregivers. It covers a lot of different disabilities but generally speaking they are severe and the care demands can be son strong they actually change the personality of the caregiver.
    • Prodigies: Having a child that is a prodigy is similar to having a child with a disability. Neither child is considered “typical” and both have special needs that must be met and adjusted to.
    • Rape: This is unique for this book because rape creates a horizontal identity in the parent first. The child may never find community and is usually viewed as defective. Rape hurts the woman, pregnancy creates permanent tie to rapist.
    • Crime: This is also unique for the book because it is the only time the child had a choice. Parents find extreme isolation and are often blamed on some level for the actions of their child.
    • Transgender: This is the scarlet letter in the religious community. Also, these children are very much unlike their parents.

The author closes out the book from the perspective of a father after beginning it from the perspective of a child. If nothing else, this creates for a nice sense of flow and continuity. However, this structure points to a key value, although unstated, to this book. The author is able to see from both the perspective of the child as well as the parent. As a child and into adulthood he was one of those children that found a horizontal identity but now as a parent he is able to get a better understanding of what it was like for his parents.

“Nirvana occurs when you not only look forward to rapture, but also gaze back into the times of anguish and find in them the seeds of your joy.” – Andrew Solomon

Personal reflections

As I worked my way through this book one of the things that struck me was how many similarities there were among the different groups. The author points out that different people create minorities but there is a unifying factor that comes for the experience of being different. It is my opinion that another secondary value to this book is that it helps others to see the benefits of difference. There is value for all of society by having people with horizontal identities.

I was also struck by how much value people placed in the difficulties their particular difference created. It was clear that most people feel that the struggle is an integral part of their personal development. According to the author, 4 out of 5 people say that the disability has brought their family closer together and 100% say that it has made them more compassionate toward others (I know that is true for me).

Other things that stuck out to me include the difference between the illness model and the identity model. When you want to try to fix the person with the disability it is because you see them as ill or something less than what they are supposed to be. That is not to say you should not try to help them be the best they can be but it is that you believe that at their core they are defective. The identity model is a lot more accepting of people and appreciates them for their uniqueness. Solomon says it like this, “When a parent says, ‘I wish my child did not have autism,’ what they are really saying is, “I wish the autistic child I have did not exist, and I had a different, (non-autistic) child instead.’”

I was also impacted by the complexity surrounding the advances in genetic screening and prenatal testing. The many recent medical advances that have provided so much more information about unborn babies than previously even imagined has placed a lot of power in the hands of prospective parents. It may help some to know ahead of time that their unborn baby has a disability but it may also make it easier to choose to terminate such a pregnancy. The reality is that a parent cannot judge something they do not know anything about. Even more than that, these advancements in medicine have given some the idea that a prospective parent has more than a right to terminate a pregnancy involving a disabled baby; they have a responsibility to abort that baby. These are things I am sure to be writing about in the near future.

Solomon’s book is filled with vast amounts of information as well as numerous stories about people and their families searching for horizontal identities. The book’s flow makes it possible to glean information about specific groups if you would rather not read it cover to cover. I would recommend that you read the first chapter in its entirety and then any of the ten chapters dealing with different identities. If you do not want to read all of the chapters I would encourage you to at least read the first few pages of the remaining chapters and then finish by reading the final chapter in its entirety.

Let me know if you do pick this book up and what you think about it. You can leave a comment at the bottom of this post or check out Treyton’s Posse on Facebook and leave a comment there.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.