More from Karl Taro Greenfeld: Life in the shadow of autism
May 18th, 2009
Interviewed on NPR, journalist Karl Taro Greenfeld says his childhood was overwhelmed by his brother Noah, who is severely autistic. Noah became a celebrity in the 1970s when their father, Josh Greenfeld, wrote a series of best-sellers about him. Karl Taro Greenfeld is the author of the just-released memoir, “Boy Alone.” (Earlier post here.)
Excerpts from Greenfeld’s interview with NPR’s Michele Norris:
… “when you have a developmentally disabled person in your family … the gravity of the family is tilted disproportionately toward that person. In my family, Noah became the center of everything.”
… “Almost as soon as I have a memory of myself, the memory is of worrying about Noah,” Greenfeld says. “I was very much the less important sibling. I don’t look back on that with any kind of self-pity; it just was the reality of the situation.”
… More than once, Greenfeld uses the word “idiot” to describe his brother.
“It’s not very politically correct,” Greenfeld says. “It’s what society used to call people like Noah, and I think I use it in that more classical sense of the word.”
While he acknowledges that growing up with his brother taught him a certain amount of compassion and selflessness, Greenfeld notes that these lessons were forced upon him – not taken up by choice.
“If you’re hit by a car, you learn to be afraid of cars,” he says. “It’s hard for me to say, ‘I’m learning so much from this and that makes it OK,’ because I look at Noah and it’s not OK.”
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June 29th, 2009 at 11:48 am
Down Syndrome vs Extreme Autism. Such totally different ballparks…neither is great news, of course…but comparisons are irrelevant.
Many years ago I formed an enduring fondness and respect for Karl’s gifted father for having the enormous courage to do exactly what Karl does now…tell his truth…even when lots of it wasn’t pretty.
It’s a huge gift to those who feel alone,tormented by some normal, hidden, ugly-feeling, negative thoughts. And I totally fell in love with the childhood Karl.
I’m glad to know of his educational and literary successes…and although I never doubted he’d grow into a compassionate, responsible guardian for Noah…I’m happy knowing he’s experiencing the joys of fatherhood. Just heard him on NPR.
June 15th, 2009 at 12:00 pm
Unless you’ve walked a mile….
Unless you have a child, a sibling, someone whom you love and who is totally dependent on you, you will never know what it is like.
My son is ill and the prognosis is not good and when my husband and I look (hard) for the bright side of his disorder and our family life, we always say, “At least he is our only child” because to have another child (a sibling to our child) who has to live with all of this would make the horrible even more horrible.
Karl’s childhood was hijacked and to minimize or not be capable of recognizing this is insensitive, to say the least.
June 4th, 2009 at 1:13 pm
I agree with Scott.
His whole article seemed to point out all of the negative things that happened in his life with his brother. What about all the positive things that happened? When i read the article, the phrase “poor me” kept coming to my mind. I can understand the frustration and challenges with having a sibling or a child with a disability, but I don’t understand the lack of understanding. If you can realize that some things just can’t be changed, living with someone who is disabled shouldn’t be a problem.
I also love the this excerpt:
“While he acknowledges that growing up with his brother taught him a certain amount of compassion and selflessness, Greenfeld notes that these lessons were forced upon him – not taken up by choice”
Yeah, brushing your teeth as a child is forced upon you too, doesn’t mean you don’t significantly benefit from it.
Quit bitching and start a revolution.
June 2nd, 2009 at 12:53 pm
Whoa, Kendall.
Please don’t put words in my, er, keyboard.
I never said that Mr. Greenfeld, or you for that matter, aren’t entitled to your feelings – I said that it made me sad that he had those feelings.
As the dad of a young girl who has Down syndrome, I’m well aware that having a family member with a disability isn’t easy.
While you praise Mr. Greenfeld for his bravery in expressing his feelings, I find it ironic that you chastise me for sharing mine.
May 31st, 2009 at 5:52 pm
Scott:
Perhaps if you could trade places with a sibling of a person with a disability, you would not have the audacity to tell Mr. Greenfeld what he should do or how he should feel.
As a sibling of a person with autism, I find it extraordinarily brave that Karl Taro Greenfeld is sharing his side of the story. Being in that situation produces a host of emotions, including anger, sadness, guilt, etc. and I have been taught my entire life to keep those emotions to myself because imagine how much more difficult it would be to be autistic.
True, his brother has had to endure difficulties and probably will have to for the rest of his life that none of us can comprehend. But it is absolutely not OK to marginalize the feelings of anyone in a family that has been touched with autism; that diagnosis has a pervasive impact and changes the lives of everyone involved. Shame on you.
May 25th, 2009 at 1:04 pm
I have a family member with a mental illness and have been a supportive sibling for almost 50 years. Yes, caregiving takes a huge toll on any family, including those with a child or adult with a disability or life-changing illness.
Friends and I formed a non-profit whose mission is support and advocacy for family caregivers. I do a presentation for caregivers, at meetings or conferences, Strategies in Self-Care for Caregivers. It is a progression of breathing, humming, music, laughter, massage, and connecting with nature. As difficult as illness is, for the individual, and the caregiving that accompanies it from all family members involved, and health providers/caregivers… we can save ourselves from heartbreak and depletion by intentionally engaging in daily self-caring and sharing, which can make a huge difference for all involved.
May 21st, 2009 at 11:56 am
Go to some of the forums for the siblings of disabilities. They’re the ones growing up with family dynamic. I’ve spoken to my roommate’s sister about it, and she got off easy, but it has still impacted her entire life.
May 20th, 2009 at 7:35 pm
I’m not sure if I’m sad because what the other says could be true or simply because it seems that he’s complaining about all the attention his sibling received.
People with disabilities have enough obstacles to overcome, they don’t need their own family members making things harder on them.
Perhaps if the author could trade places with his brother for a day, he might not feel so slighted.
May 20th, 2009 at 10:54 am
Scott, it should make you sad. I find it maddening as the parent of 7-year-old boy with autism, that people such as NPR’s Michele Norris have no clue how difficult it is to control a child with this disability. Michele made some inane comment about the “gift” that the experience gives to someone who experiences what Karl Greenfeld had to endure. It is not a gift — it is a long-distance run with an uncertain finish.
Autistic children fixate on nonsense, obsess over the most trivial details if something is “wrong” with a toy or food or clothing, and can be damn moody when they don’t get their way. This sounds like a typical child, but an autistic child cannot let go of their compulsion easily.
Everyone who has autistic children should read this as a primer for worst case scenarios in their child’s life — it can easily happen. The stress is difficult to relate to the uninformed.
May 19th, 2009 at 8:58 am
This just makes me feel sad.