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That Went Well: Adventures in Caring for My…

That Went Well: Adventures in Caring for My Sister

by Terrell Harris Dougan

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This was a humorous, usually heartwarming and sometimes heartbreaking book about a difficult subject. Terrell’s sister, Irene, suffered brain damage at birth and would forever be a child in heart and mind. After the death of her parents Terrell became primary caretaker for her sister. This book not only describes her trials and tribulations in that role, and the effect it had on her everyday life, but emphasizes that sometimes necessity is truly the mother of invention. Her family was the first driving force in Utah for establishing any kind of social support system for people with mental disabilities other than institutionalized care. The system did not always work for her sister, but than only spurred her into action for developing some sort of independent living situation that would work for Irene. Ms. Dougan is an amazing woman, who was also one of the pioneers behind the Sundance Film Festival.

There are two major things I took away from this book, one – I do not think I could handle a similar situation with the fortitude, grace and humor that Ms. Dougan did and, two – as Ms. Dougan so often points out, sometimes those we perceive as being challenged have a lot to teach those of us perceived as “normal”.
( )
  ChristineEllei | Jul 14, 2015 |
Terrell uses the book to write about her trials with her mentally handicapped older sister. Terrell tries very hard to treat her sister, Irene, as everyone else but every time she tries Irene show that she is not. That Went Well is a book that talks about the negative and positive of taking care of a handicap family member.

I liked that the family kept a good sense of humor throughout tough times. I also think compared to other memoirs with handicapped family member this one didn’t fluff the book up with with everyone always happy or perfectly handled.

On another hand I felt there should have been more about the handicapped sister, Irene.
A lot of the stories told in That Went Well is about Terrell trying to get her sister to like and do adult things.

I read this book because someone recommended and gave me the book. It is a good read and there are frustrating moments and humorous moments. I recommend it for anyone who has a handicapped member in their family or those that know families as well. ( )
  lavenderagate | Apr 9, 2013 |
I think I have written before about the time that the children and I were in a large bookstore, the Cherub was with the Equuschick and I was nursing a newborn in my sling, and the feisty and lively FYG was in the care of the HG (Jenny and Pip were seated together in the children's section, forbidden to move)- when the Cherub thought it would be hilarious to through the mother and father of all temper tantrums. The EC took her into the bathroom to try to calm her down- or at least avoid all eyes, and the Cherub's screams were so uncanny, so loud, and so disturbing that a crowd rapidly gathered outside the bathroom to see what was going on and when I arrived, the female employee was trying to make the male employee burst into the bathroom and was suggesting calling the cops. I explained that I was the mother, the child was with her sister, and that I knew she sounded horrible, but she was mentally retarded and that noise she was making was not, truly, the sound of a child being tortured. The crowd dispersed (except for a pregnant lady who wanted the bathroom), and I walked in.

The Cherub stopped as soon as she saw me. The EC evaporated into a quiet, solitary corner with a stack of quiet, mannerly books. I took the Cherub, who feigned innocence and kept signing that she wanted the EC. I do not know how much she understood, but I know it made me feel better to tell the little stinker, "Look, you may want the EC, but you have just humiliated her so deeply she may never enter another store with you for the rest of your lives. That was NOT nice."

I could tell other Cherub stories, all of which would illustrate just why I enjoyed this book, in spite of its deficiencies, so much. The book is That Went Well, by Terrence Harris Dougan
Terrell writes with humour, pluck, and down to earth realism about the challenges of caring for her sister, who is mentally retarded and at the time of this writing, in her sixties. As she writes about these challenges, about her sister's exploits, successess, and failures, and her own frustrations and burdens, she made me laugh, more than once, cringe in rueful recognition, and swallow down a large lump in my throat a couple of times.

Through her family's story we also see some of the ways America's treatment of and acceptance for the disabled community has changed over the years (and some of the ways it hasn't), how kindly meant words can be demoralizing and burdensome, how exhausting care-giving can be, and how important family support is, and more.

Terrell's younger sister was born with brain damage, but her family would not realize how extensive this was until she reached school age and they tried to enroll her in school. They knew she was slow, but they hadn't realized just *how* slow, and how many of her behavioral issues were related to her disability.

At that time (the 50s), most of these children were simply institutionalized, and their families seldom saw them. They certainly were not part of the mainstream community. Terrell's parents did not want that for their daughter, and they sought out other families with children like their Irene, and put together programs to help them care for and teach their children, lobbied for better legislature, sought funding for more programs, including residential care centers, worked hard to make society accept their children and their unique needs.

Unfortunately, Irene's anger problems meant that nearly all the work Terrell's parents did for retarded children was for other people's children. Her family had to work harder to find a successful way to help Irene live as independently as possible, but still be cared for as her special needs required.

The literary style could be better, and parts of the book seemed choppy. Rather than a cohesive, flowing story arc, each chapter seemed disjointed to me, and only tangentially connected to the previous one. I was really frustrated with what seemed to me to be a choppy writing style until I realized that if I read this book more like a collection of separate articles about life with a mentally challenged sister than as a cohesive story where each chapter flows seamlessly into the next one, then it would work better. Then I was really able to enjoy the book. That may even be the author's intention.=)

The author's religious background is Mormon, and though she has left the Mormon church theologically, she does still have her sister attend, and she still admires the traditions and community of her past. Although the book is not a political one, several offhand comments made it clear that politically I am far more fiscally and socially conservative than the author is. I felt those small plugs for her political point of view distracted from the narrative, but only slightly.

As the mother of a retarded child, I especially appreciated Terrell's excellent balancing act- she was able to be honest about how hard, draining, and embarrassing these children (and adults) can be, as well as rewarding. Her affection and love for her sister shone through the narrative, even when writing about issues such as her sister stealing things from her work, sliding on her own poop in a care-giver's car, and throwing things in a fit of rage while the two siblings were shopping together (throwing things is a regular feature in her sister's life).

Although my daughter shares a diagnosis of retardation, her situation and needs are very different from Irene's in many ways. Nevertheless, there was so much in this book with which I could identify. Like chapter 18, Friends, Labels, and the Future, which was full of paraphrases of things people have actually said and the delicious replies none of us make, but most of us think:

"I think secret, evil thoughts all the time when my friends, whom I thought were my friends, believe they're being helpful by telling me what to do with my sister. I don't say these thoughts out loud, but I do think them.
"Hey, Terrell, Has anyone ever really tried to teach Irene to read?"
No, of course not We shut her up in the attic, tied to a chair all her life.
I have heard multiple variations of that question, as well as the version where somebody who meets me daughter for the first time proceeds to tell me that she probably can already read and has just kept this a secret from me. I've also been told by people who haven't spent as much time with her in a month as I do in a day that she probably really knows how to talk, but just doesn't. What these helpful elves think this says about me, I would rather not know.

This is a wonderful book to give to anybody you know who has any level of special responsibility for or connection with another person with challenges, whether that be somebody with a senile parent, a brain-damaged sibling, or a disabled child.
The author is encouraging, funny, affectionate and, I was relieved, never pretends that these 'angel beings can do no wrong,' a sappy and syrupy sentiment that I consider just as demeaning and dehumanizing as many more derogatory statements.

The Cherub is retarded. Her nickname not withstanding, that doesn't make her an angel.;-) She is as human as you or I, and sometimes a lot harder to deal with. I can love her, support her, care for her, and fight fiercely for the rights of children like her not to be dismembered in the womb and to live with dignity, without being harassed and demeaned by a society made uncomfortable by the disabled while still acknowledging that sometimes she is a dear and sometimes she is a downright ornery and uncooperative little cuss.

I'm glad Terrell Harris Dougan wrote this book. ( )
  DeputyHeadmistress | Nov 9, 2009 |
There are a decent number of memoirs out there that talk about caring for a disabled family member, but most of them seem to sugar-coat either the family member in focus or the narrating caretaker. This book is engaging, thought-provoking, and funny, without trying to sweep over mistakes and struggles.

On top of it all, the narrator was heavily involved in the movement that helped transform care for the disabled from being institution-focused to being community-centered -- and so while the book isn't about that, it definitely provides an illuminating context for the story as it plays out.

Not only would this be a great read for anyone out there who has experienced caring for a disabled adult family member and all the bizarre interactions with "the system" that go along with that, I also think it would be an enjoyable and thought-provoking book for people whose life experiences have never touched on these issues. ( )
  miki | Sep 10, 2009 |
In 1946 Terrell Harris experienced a lightning storm. That same night her sister Irene was born. Irene developed slower then other children- not walking until a year and a half of age. It soon became apparent that something was not quite “normal” about the little girl.

That Went Well is Dougan’s experiences growing up with a special needs sister. As Irene grows the care she needs also expands, and having a handicapped child in the 50s compounded issues. Still, the family rallies and starts the first programs in the area for special needs kids. And as Dougan herself ages, she helps with these programs, as well as fights on a more national level for the rights of the handicapped.

Through it all Irene develops her own personality- her own likes and dislikes- fears and dreams. Eventually Dougan becomes Irene’s chief care-taker and she learns that even though her sister can throw fits and be suborn to a fault- that they are still sisters. And as Dougan realizes that she can’t control everything in her sister’s life things become easier. Though they’ll never have a “normal” relationship, Dougan lets her readers know that Irene deserves a life and happiness as much as the next person.

Coming from a family with a special needs member, I found this book both inspiring and bittersweet. If you haven’t been there you can’t readily understand the struggles that plague a family like the Harris’. The little touches of history (such as Dougan’s involvement with laws regarding the handicapped) are a nice reminder that these rights and programs are a relatively new development. Personally, I think everyone should read Dougan’s book, or one like it. She does a wonderful job of showing the ups and downs of their family, all the while reminding people that it’s okay to be different.
  GondorGirl | Sep 2, 2009 |
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When Irene was born, her parents were advised to institutionalize her. They refused and instead became trailblazers in advocating for the rights of people with mental disabilities.

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