This is an amazing book. It is also a very big book at almost a thousand pages but it is well worth the effort. (Actually, the last 250 pages are all notes and references.) The author, Andrew Solomon writes about families who have a child or children different from them and how the families cope. He has done extensive case studies over a decade or so and the individual stories are poignant and mesmerizing. The long first chapter is a bit more technical but stick with it because he is explaining his methods and theories. He explains that as a gay son he and his family had to learn to cope and this suffering caused him to become interested in families where the child differs in a significant way from the parents. He then devotes the next 11 chapters to the following issues (all of which will floor you):
The DEAF: How do families cope when they have a deaf child? He gives the stories of many family and explains the conflicts between sign language and implants and how the deaf community struggles to survive and protect its own. You will never look at sign language or the deaf the same way. American Sign Language is a true language, very complex and difficult to fully learn after childhood. The grammar and structure are not related to English. A child must have language early in life, whether that language is by sign or by hearing/voice, otherwise it will be too late for the child to ever fully enter into language. Therefore, big decisions about implants, education, signing have to be made fairly quickly. It makes you reflect on the choices. The deaf community believes that the implants are imperfect and don't offer real hearing and that forcing them on infants may deprive the infant of real language until it is too late. He tries to present all sides fairly and usually doesn't take sides.
DWARFISM: Like the deaf, dwarfism too is a community that struggles for acceptance. There are so many physical health issues here with various forms of the syndrome. And the very visibility of the condition makes them standout. Once again, families have huge decisions to make for their child. (And some of the examples of how insensitive doctors have explained things to the parents are mind blowing.) Shortened limbs limit so many things, from mobility to personal hygiene and some of the purposed solutions are drastic. Fortunately, here as in other cases, the internet allows forming of communities of those who share the condition. But there are many controversial issues.
DOWN SYSDROME: Families often go into shock when they discover their newborn has Downs. Everything has changed for them and for this child's future. Families adjust in different ways and go through a long period of grief and adjustment. Often these children are so sweet and loveable that the parents come to the conclusion that they would not wish it any other way. This chapter is a heartbreaker and an eye-opener.
AUTISM: This chapter blew me away. Of course I am familiar with autism because it has become so common but we tend to think of withdrawn kids whose families try desperately to break into their isolated world. But the more extreme cases can drive families to near insanity from lack of sleep and from just trying to physically control the child. Feces and blood spread on walls and the whole house - what a way to walk in the door. For a minority there is hope as some children can be pulled back into normal life. But some can't... What the families face is unimaginable.
SCHIZOPHRENIA: When a child has Down Syndrome the family usually finds out about it at birth or early infancy. Then they have to adjust to the child they have rather the child they expected. With Autism the child often develops normally for about 2 or 3 years and then regresses and the family has to give up the child they had and live with the one they have now. Schizophrenia is even crueler since it often does not show up until puberty or the teen years. Then the hallucinations and confusion start and the family loses the person they have known for all these years. Sometimes medication and treatment offer some respite but often it doesn't and these are agonizing cases. There are a wide range of symptoms and some can be quite violent. The families can face agonizing decisions including considering institutionalization.
DISABILITY - In this chapter he covers many forms of disability ranging from Cerebral Palsy to multiple severe disability where the person has an overwhelming number of challenges. Some are completely paralyzed and some don't even have fundamental awareness. They don't know who they are, they can't talk or feed themselves or demonstrate basic emotions. But as he says "They are human and often they are loved." The individual stories and the decisions the families face will haunt you for a long time.
PRODIGIES - This was the most surprising chapter. We think of having smart kids as a good thing. Well, these children are beyond genius and families don't know how to handle them. They can have extraordinary gifts from toddlerhood but dazzling brilliance is an aberration and the parents are faced with raising children who are beyond their comprehension and who are often poorly adjusted in many ordinary life functions. Because the author understands music he concentrates on musical prodigies but some are also math genuises. Can they have a happy life - read it and see.
RAPE - Children born of rape always carry for the mother the memory of their violent conception. And if there is an ethnic or racial difference, then the child and mother face even stiffer obstacles. Rape is often used in ethnic wars and then both mother and child are cast aside as reminders of the enemy. This is so common is many of the war-torn areas of the world today and he has examples from all over the world.
CRIME: How does it affect a family when one of the children commits a vicious crime? Unfortunately today there are too many examples and they are all tragic. The most moving part of this chapter is the long section on the family of Dylan Klebold - one of the shooters at Columbine. His haunted parents are really magnificent people. The nightmare they have had to deal with is beyond imagining and yet reading their story is incredibly uplifting despite the tragedy that underlies it. Don't miss this section.
TRANSGENDER: I don't know if anything can be more conflicting to parents than gender confusion. Of course sometimes it is obvious at birth when a child is born with both male and female genitalia, and then there are big decisions to be made. But what about the physically perfect child who says he/she is the wrong gender and insists on it? Or some children who want to be a mix or alternate between genders? What these families face and how bravely some of them cope is mind boggling. And the abuse, bigotry and hatred they can encounter from the outside is terrifying. I found it hard to sleep after reading this chapter.
FATHER: In this final chapter Solomon tells his own story of becoming a gay father of biological children and the struggles he faces. I live in California and this is much more widely accepted here than in other parts of the country but there are still many obstacles. Very moving.
This powerful book is beautifully written and will affect you for a long time.
A final afterthought: Many of these families have found happiness in the hand that life has dealt them - they are very brave and truly love their children and only want their children to be happy. They are an inspiration.
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