Nina's Reading Blog

Comments on books I am reading/listening to

Archive for the ‘Learning Disabilities’ Category

Look Me in the Eye: My Life with Asperger’s

Posted by nliakos on March 31, 2016

by John Elder Robison (Crown 2007; ISBN 978-0-307-39598-6)

In the tradition of Temple Grandin’s Thinking in Pictures and Emergence: Labeled Autistic and Daniel Tammet’s Born on a Blue Day (more here), John Elder Robison has written a fascinating account of his life. Robison’s Asperger Syndrome which was not diagnosed until he was forty years old, when a therapist friend gave him a book about Asperger’s because he felt that the book “fit [Robison] to a T.” In addition to coping with his very different way of being in the world, Robison and his younger brother, the writer Augusten Burroughs, had to deal with an alcoholic father and mentally ill mother. It wasn’t easy, to say the least. Somehow, Robison managed to make it to age sixteen, when he left home for good. He was a brilliant designer of sound and light systems, despite never finishing high school, and he managed to build a career as a sound engineer for rock bands (most notably KISS), a designer of electronic toys for Milton Bradley, and finally found his niche as a repairer and restorer of high-end automobiles in Amherst, Massachusetts. He married twice and has a son. He eventually forgave his parents and forged new relationships with them as an adult. He has obviously succeeded in his life, but it has been a struggle, which he describes in this fascinating book.

Robison’s directness and honesty are refreshing and give neuro-typical readers an opportunity to perceive the world from an autistic viewpoint. My favorite chapters are “Logic Vs. Small Talk”, where Robison explains his difficulty having conversations with neuro-typicals,  and “Married Life”, where he describes how he and his wife keep their marriage strong.

I’ve just put Robison’s new book, Switched On: A Memoir of Brain Change and Emotional Awakening, on hold, and I can’t wait to read it!

Posted in Learning Disabilities, Memoir, Non-fiction | 2 Comments »

Mother Father Deaf: Living Between Sound and Silence

Posted by nliakos on November 25, 2014

by Paul Preston (Harvard University Press, 1994)

Paul Preston is an anthropologist who also happens to be the hearing son of deaf parents. Interested in investigating the implications of this fact, he conducted an extensive study of other hearing adults who were raised by deaf parents. The resulting book reads a bit like a Ph.D. dissertation (perhaps it was), with numerous references to the research of others (although not much research has been conducted on exactly this topic–one of the reasons Preston felt compelled to do it, I suppose) and a chapter on methodology. For months, he drove around the country interviewing 150 subjects for the study. Many of the subjects only agreed to talk to him when they discovered that he was one of them; apparently, “Ooh, what was that like?” is a common response when one learns that someone grew up in a deaf household. There is a rather new organization, CODA (Children of Deaf Adults), which is forming a community of people whose parents were deaf, but for many of Preston’s subjects, it was the first time they had really reflected on the impact their parents’ deafness had on them and been asked to assign a meaning to it.

There were some surprises for me. For example, I assumed that anyone raised by deaf parents would be fluent in American Sign Language; but some deaf parents were not fluent signers themselves, and some refused to sign with their children, not wanting to compromise their entry into the hearing world, while other children depended on siblings to interpret for them. This reminded me of immigrants’ children who never become proficient in their parents’ language. One wonders at the impact the resulting lack of communication must have on parent-child relationships. I also learned that many deaf children acquire sign language at residential schools, where they also grow up away from their hearing parents and siblings, with a resulting lack of affect in some cases. And just as hearing parents may react with horror when told that their baby is deaf, deaf parents may expect and hope for a deaf child to inhabit their world with them and be disappointed when the child turns out to have normal hearing: “I thought, Oh, my God, she’s hearing! What am I going to do? . . . I don’t even know how to talk to her. . . . It never occurred to me that my child would be hearing. I was surprised. I was scared. . . . The Hearing world and the Deaf world are such separate worlds. I worried that we would never connect, or that we would drift apart.”

In the book, Preston distinguishes between deaf and Deafhearing and Hearing.  Many informants felt strongly that they were Deaf despite being hearing. One poignant quote is from someone whose father told him at age 18 that he belonged to the Hearing world. “I looked at him and [signs, ‘What do I know about the Hearing world? I hear, yes. I speak, yes. But I thought I was Deaf”]. My father smiled and said [signs, “true, you’re Deaf, but you’re Hearing too”].  I grew up Deaf. I guess now I’m Hearing. But some part of me still feels Deaf.”  From this and other quotes, the reader is able to enter the bicultural world of hearing people who grew up within the deaf community, which, for better or for worse, is isolated from the hearing community–even within an extended family, where deaf members may not participate fully in family life (at celebrations and holidays, for example, when extended families get together). Hearing children of deaf parents are often called upon to interpret or facilitate communication between their parents and hearing relatives or with the “outside world,” meaning that these children carry heavy responsibilities from a young age. As adults, Preston’s informants looked back on these unusual responsibilities, some matter-of-factly, some with resentment, and some with gratitude.

The book is academic and therefore somewhat dry, but it’s a fascinating topic and therefore I stuck with it.

Publisher’s website: http://www.hup.harvard.edu/catalog.php?isbn=9780674587489

Posted in Learning Disabilities, Non-fiction | 1 Comment »

No Pity: People with Disabilities Forging a New Civil Rights Movement

Posted by nliakos on August 9, 2014

by Joseph P. Shapiro (Random House/Times Books 1993)

No Pity tells the story of the disability rights movement. It introduces the reader to the heroes of this movement, such as Ed Roberts, who refused to accept no for an answer at the University of California Berkeley; Judy Heumann, who became a disability activist when she was denied a teaching job for which she was well-qualified; T. J. Monroe, who organized fellow people with mental retardation to stand up for their rights as members of People First; and Jim (no last name given), perhaps the original inspiration for the author’s interest in and passion for the fight for equal opportunities, whose slowness of speech belied his talent for all things mechanical, so he lived most of his life in an institution; and many more. Shapiro includes post-polio quadriplegics and paraplegics and disabled veterans; people with developmental disabilities, cerebral palsy, traumatic brain injury, and ALS; people who require a respirator to breathe; people who are deaf or blind. . . . in short, people with all kinds of disabilities, major and minor. He tells the story of the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). He reveals the surprising statistic that one in seven Americans has a disability; they and their relatives and friends constitute a population that includes poor people and rich people; people in power (including presidents, legislators. . .) and people without any power at all; people of all races, religions, and ages; people who were born disabled and people who became disabled later in life due to disease, accidental injury, or war-related injury. This book shows how many smaller rights movements merged to create the disability rights movement.

Shapiro took events that I remember, like the battle for a deaf president of Gallaudet University in 1988, and put them into a larger context. My daughter, born very premature in 1992 and considered to be on the autism spectrum, has benefited in many ways from the advances described by Shapiro in this book; yet I did not realize how recent some of them were. My perspective as the parent of a person with disabilities led me to question some of the ideas in the book, such as the idea that “even children with the most severe disabilities learn better in integrated settings” (p. 168). But I don’t want to quibble, because this is an important book, one we should all read, because it reminds us all of our shared humanity.

Posted in Education, History, Learning Disabilities, Non-fiction | Leave a Comment »

A Man Without Words

Posted by nliakos on September 30, 2012

by Susan Schaller (Univ. of California Press 1991)

Another of the books I’ve been meaning to read for a long time, but it wasn’t available at my public library; I found it at the university library, on a shelf with many other accounts of the lives of the deaf. Susan Schaller is a hearing person who learned American Sign Language because she loved it. After moving to Los Angeles with her graduate student husband, Schaller signed up with the local interpreters’ registry and was assigned to a reading class for hearing-impaired people. This was where she met the man she calls Ildefonso, a 27-year-old Mexican she soon realized was “languageless”–having never learned any language at all, either oral or sign-based, he had no concept of what language was and no comprehension of what people were doing when they interacted with each other.

Schaller took on the enormous challenge of introducing Ildefonso to language. She describes her often fruitless attempts to get him to understand the smallest things, as well as her misgivings about having unlocked the door to human communication for him while being unable to help him cross the threshold  She wondered if it was even possible for a languageless adult to learn a language; she searched and found nothing written about such people, yet she knew Ildefonso was not the only one. She tried to solicit support from the only academic she could discover who had written about adults without language, only to be rebuffed. But she could not give up.

Eventually, Schaller’s path led her away from Los Angeles and she lost sight of her pupil for several years. When she found him again, he had indeed acquired language, and he was eager to answer all of the questions she had tried to ask him when they worked together, which he had been unable either to understand or answer.

Schaller does not describe how Ildefonso managed to progress from the very rudimentary ASL she was able to teach him to the complete fluency he acquired later. And it was not only language that Ildefonso lacked when she met him; he knew nothing of time, history, geography, science, or anything that someone who has attended elementary school would know something about, yet somehow, he managed to catch up once he learned ASL. This would appear to contradict the critical period hypothesis for language development.

Despite the dearth of research Schaller found concerning languageless adults, Ildefonso introduced her to a whole group of such people just in his own community. Obviously, there must be many more such people in the world, which makes me wonder why there hasn’t been more research done or attempts to help them participate in the societies they live in.

Posted in Education, Learning Disabilities, Non-fiction | Leave a Comment »

I Am in Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice

Posted by nliakos on May 4, 2012

by Elizabeth M. Bonker and Virginia G. Breen (Revell 2011)

Virginia Breen narrates the story of her 13-year-old daughter Elizabeth, interspersing her narrative with Elizabeth’s poetry (written between the ages of eight and thirteen) and commentary.  Autism prevents Elizabeth from speaking, but after she learned to use a device called a letterboard from Soma Mukhopadhyay (another “autism mom” who created this simple device to help her son Tito communicate), and then  began to use a typewriter, Elizabeth was able to write poems and messages to communicate her thoughts. One of her first comments after learning to use the letterboard was, “I finally got to talk.”

Elizabeth’s poems are not complicated, but they are heartfelt. I loved her comments on the poems. A couple of examples: “I am frustrated because I can’t speak. Why me? I don’t get it. Why do people have disabilities?” (p. 60) and “I sometimes get frustrated and act out before I realize what I have done. I hope to be able to better deal with my emotions so people won’t be scared to be my friend or schoolmate.” (p. 72) and “I am not always able to show people how I am feeling. Sometimes I am not feeling well inside, or I have a hard time focusing. Sounds or smells that bother me do not seem to be noticed at all by others. I struggle to fit in, and succeed most days, but like everyone else, I have a bad day once in a while.” (p. 77) and “When learning something new, I have a hard time. I need time to figure it out in my own way.” (p. 85) These comments give NT (neurotypical) readers some insight into Elizabeth’s experience.

Both Breen and Elizabeth believe deeply in God and His power to heal Elizabeth. I am not a believer, but I admire their faith and hope for both their sakes that Elizabeth will be healed some day.

Elizabeth’s compassion for other people whom she sees as more challenged than she is is inspiring.

As I was reading this book, I often wiped tears from my eyes.

Posted in Learning Disabilities, Non-fiction | 1 Comment »

Where Is the Mango Princess? A Journey Back from Brain Injury

Posted by nliakos on July 19, 2011

by Cathy Crimmins (Vintage Books, 2000)

I had already read this a few years ago, but I picked it off my shelf recently and couldn’t put it down, so I reread the entire book. The story of Crimmins’ husband’s traumatic brain injury and its aftermath is an amazing window into TBI and its far-reaching effects on the patient and his family. It is also a scathing criticism of our American (non-)system of healthcare. Alan, Crimmins’ lawyer husband, is injured in Canada, where he receives excellent care.  However, all his American health insurance company can think of is how to deny him adequate care in the United States, starting with their refusal to fly him back to Philadelphia from Ontario and continuing on through a too-early hospital discharge and grossly inadequate rehabilitation benefits.  It makes the reader want to scream. When people are dealing with a healthcare crisis, the last thing they need is to be forced to fight for the care their loved one requires.

Perhaps the saddest aspect of the book, for me, was the devastating effect the TBI had on Alan’s relationship with his young daughter, Kelly,  who witnessed the accident and was thereafter subjected to extremely inappropriate behavior and language from her father.  Crimmins was not very available for her daughter post-accident either (too busy fighting with the health insurance company), and she (daughter) spent a lot of time with very kind friends. Not until Chapter 11 does Crimmins finally step in to protect Kelly from her father’s erratic behavior. When she finds out that he has actually kicked Kelly, she threatens that if he ever harms her physically again, she will take Kelly away from him forever. But the emotional abuse continues unchecked–perhaps because Crimmins is equally abused by Alan, whose personality underwent a huge change after the accident (apparently a common result of TBI). But she’s a grownup, and presumably could leave if she wanted to. It is to her credit that she stands by Alan despite the hardships–but I thought she should have done more to protect Kelly from her disinhibited father. This is not to say that Alan’s bad language, fits of rage, or just plain weird behavior were his fault; they were not.

A fascinating read. which makes the reader pray that s/he and his/her loved ones never experience a TBI.

Posted in Learning Disabilities, Non-fiction | Leave a Comment »

NLD From the Inside Out: Talking to Parents, Teachers, and Teens About Growing Up with Nonverbal Learning Disabilities

Posted by nliakos on August 13, 2010

by Michael Brian Murphy with Gail R. Shapiro.  Booklocker.com, Inc 2008.

Michael Murphy started writing this book as a psychology paper when he was in college, and his mother collaborated with him to make it into a full-length book.  It’s a nice addition to my NLD library.  Murphy is writing for a mixed audience of teens/young adults with NLD and the adults that live and work with them.  For me, the best chapter was “Your NLD Brain”, which explains the anatomy and functions of the brain very clearly and taught me some things I did not know, like “The putamen is responsible for procedural memory, such as knowing how to tie shoes….”  Who knew?

The book features extensive quotations from other young adults with NLD whom Murphy interviewed.

Posted in Learning Disabilities, Non-fiction | 1 Comment »

Quirky Kids

Posted by nliakos on May 28, 2010

by Perri Klass, M.D., and Eileen Costello, M.D. Ballantine, 2003.

I’d like to recommend a book I just discovered: Quirky Kids: Understanding and Helping Your Child Who Doesn’t Fit in–When to Worry and When Not to Worry, by Perri Klass and Eileen Costello.  It focuses on Autism Spectrum disorders including HFA and Aspergers, nonverbal learning disability, ADHD, sensory integration dysfunction and more. Klass and Costello are Boston-area pediatricians and moms.  The book was published back in 2003 by Ballantine, and oh how I wish I had read it back then! It’s really so comprehensive and practical.  I found the section in Chapter 2 on Diagnoses and Labels to be particularly helpful.  It explains clearly how different specialists give different names to (parts of) the same thing.  Another very helpful chapter is Chapter 10, “Mind-Altering Substances: Medications and the Quirky Child”, which lists meds available in 2003 and before, what they may be used for and what to watch out for.  I wish I had a 2010 edition of that chapter!  Finally, the last chapter gave me hope by reminding me that it is a lot easier to be quirky when you grow up: “Despite a great deal of romantic twaddle about the freedom and innocence of childhood, the truth is that many children’s lives are strictly regulated, and no major deviations from the norm are tolerated. A child can’t wake up one morning and decide, That’s it. I’m through forever with math…with riding those damn buses…with pretending I like the great outdoors.  But adults can easily make such arrangements for themselves.”  The book also includes excellent resources and references for each chapter.

Here is the link to the book’s page on amazon.com; unfortunately, there does not seem to be a second edition.

Posted in Learning Disabilities | 1 Comment »

The Body Has a Mind of Its Own: How Body Maps in Your Brain Help You Do (Almost) Everything Better

Posted by nliakos on August 15, 2009

by Sandra Blakeslee and Matthew Blakeslee (Random House 2007)

This is a fascinating book.  The authors, a mother and son science-writing team, endeavor (mostly successfully) to make some of the latest developments in neuroscience accessible to the lay reader.  It is now well established that everything our bodies do, both inside (circulatory systems, &c) and outside (movement, language, &c) corresponds to “maps” in the various parts of our brains.  Poke the map in the right place, and something happens; apply the proper stimulus (movement, touch, graphic image…) and neurons in the corresponding map can be observed to fire.

In the first chapter, the concepts of maps, body schema (your perception of your body), body image (your belief of how your body looks) and body mandala (the network of body maps in the brain) are introduced.  The subsequent chapters each take up different aspects and research areas of these, such as how your body image may not correspond to reality (why you still feel fat when you’ve lost excess weight, for example), how mentally rehearsing movements and skills can be almost as effective as actually practicing them (think of athletes’ or musicians’ visualizations), and how what you wear or carry or wield literally becomes an extension of your body, as far as your brain is concerned.

Chapter 9, “Mirror, Mirror: or, Why Yawning is Contagious” was especially interesting to me.  It deals with mirror neurons, special brain cells that represent not only one’s own actions but also those of others.  These mirror neurons allow us to understand the body language of other people and thus to anticipate what they might do, because their actions are mirrored in templates in our own brains. A dysfunction in these cells is suspected in autism and may also be involved in the inability of people with nonverbal learning disorders to read body language.

Favorite quote:  “When you watch dance, your brain dances.” (p. 170)

The webpage for this book is here. It includes excerpts, links to interviews, reviews, and more.

Posted in Learning Disabilities, Non-fiction | Leave a Comment »

From Emotions to Advocacy: The Special Education Survival Guide

Posted by nliakos on July 27, 2008

by Pam Wright and Pete Wright.  Harbor House Law Press, 2006 (2nd edition).

Pam and Pete Wright are the founders of Wrightslaw, a website devoted to special education, advocacy, and the relevant laws.  They also have a free online newsletter and have written several books to guide parents of children with special needs through the legal intricacies of IDEA and NCLB, including Wrightslaw: Special Education Law, which I own and also recommend, From Emotions to Advocacy, and others, as well as DVDs and other websites.  I wonder when the Wrights have time to do anything else; maybe they don’t.

For me, the most important benefit from reading Special Education Law was actually reading the law for the first time.  The Wrights stress the importance of reading the statutes and regulations for oneself.  This was how I first realized that schools are obligated by law to prepare children with disabilities for independent living (insofar as possible) and employment — not only to educate them in the traditional sense of the three Rs.  I had been led to believe that skills not directly applicable to education (math, reading, writing) were not the responsibility of the school to enhance.  Wrong!

Legal language is difficult to read, but the Wrights explain and clarify, giving plenty of examples.  They use the same strategy in From Emotions to Advocacy (in fact there is quite a bit of overlap between the two books).  In this book, I learned how to collect all the reports, IEPs, medical records etc. that had been languishing in 30 different folders and organize them into a chronological master file.  (They recommend using a large 3-hole binder to keep the documents–I already have three!)  I am now in the process of creating the index for this file.  It has been very educational for me to go back and look at these documents again, and the Wrights point out that in order to be an effective advocate, a parent must become very familiar with the contents of the file, because no one else is ever going to read through all of it!  There are useful chapters in both books about keeping a written record of all communication with the school and how to write effective letters that will serve as solid evidence if there is a dispute or due process hearing.  They assume that school systems may need legal coercion to provide FAPE (a Free Appropriate Public Education, guaranteed by IDEA), so the books are geared toward preparing a strong case.  I hope I will not need to use my Master File for this purpose, but if I ever do, the Wrights’ books and websites will certainly provide excellent guidance in how to proceed!

Posted in Education, Learning Disabilities, Non-fiction | Tagged: , , | Leave a Comment »