Karl Taro Greenfeld, I Want My Breath Back! An Autism Mom On Reading "Boy Alone."
As the mother of three children with autism, girls at that, the reality of the future often paralyzes me. Karl Taro Greenfeld's new memoir about growing up with an autistic brother, titled Boy Alone (that's an Amazon link) from Harper Collins has made me stop and think; and sit and cry. It has also re-affirmed why I am a biomed Mom, a Mother Warrior who will continue to seek treatments for my girls.
Noah Greenfeld is a 42 year old with profound autism. You might have read about him two weeks ago in Time Magazine HERE. His father Joshua Greenfeld wrote three books about Noah in the 1970s and '80s. The Greenfelds, now elderly, were among the earliest biomed parents, seeking answers, trying all available avenues, when autism was exceedingly rare. I have great respect for how hard they worked on behalf of Noah.
Karl, whom I've had the pleasure of meeting in the glorious literary splendor of the Algonquin Hotel while he was researching the book, has a wife and two daughters. He lives in New York City. His brother and parents are in California. Karl is preparing to move his own family to California to be closer to Noah. Back in 1978, Karl wrote a report for his 7th grade health class (HERE) on what it was like having a brother with autism. It ran in the New York Times. Not a bad start to his literary career, eh? You can read Karl's bio (HERE). I'll be running a contest shortly.
I wrote a piece on Boy Alone for HuffPo. It's up today HERE. I'd appreciate if you'd share your comments at HuffPo. It's important that those outside the autism community know what we face. This book will open up conversations about... the future.
Kim Stagliano is Managing Editor of Age of Autism.
I just seen Karl's interview with Dr. Sanjay Gupta and i wanted to tell him he is not alone and either is Noha. My grandson Austin was born in 2004 he was a very large baby other than that pretty much normal until he was 22 months then Autism struck him like a thunder bolt, my daughter went through a period of denial and anger and she tried to hide it, when that did not work she tried to seek medical help but buy then he was pretty far gone he is 5 years old now. we took custody of him last year(grandparents) because he is very big about 150lbs and she is having more children he does not like them he pinches them so he lives with us we have him on a gluten-free wheat-free casien-free diet which has really helped his focus so much i can't tell you. he is in thearpy 2 times a week and now he goes to school 2 times a week for a half hour a day. When i seen your brother Noha he reminded me of Austin so much i don't know what the road has in store for us but i am willing to make the jorney with him. His food his expensive he is full of challanges daily but it is still my hope to make him a functional adult.I wish you the best.
Posted by: Kim Daniels | April 07, 2010 at 01:30 PM
I didn't know where else to post this too so I'm posting it here. I wrote to Huff Po on the article about Jenny and the "Playboy" bunny thing and I must say that I'm pissed. They won't let some of my comments through even though they weren't that bad. I wrote a post to the doc that wrote the article and apperently Huff Po is in the business of protecting Doctors too. Here's my post in response to NOT posting my comment.
What was wrong with my post HuffPo? I do believe that my posts aren't quite as bad as others and yet you let those go through. I wanted PricipalDad to know that this was not a post that was meant for him. That he should let the doctor answer her own questions. Does he need to speak for her? Was it the fact that I referred to Offit as a vaccine profiteer? PrincipalDad is allowed to say MY comment is derogatory and repulsive but I'M not allowed to say what the doctor wrote was derogatory? Is that how it works? That HuffPo protects the doctors from answering the tough questions too? Protects the doctors from accountability for their actions and their words? Lord, I wish I lived in that world...where I wasn't accountable for anything that I didn't really think I should have to answer too. I dare you to print this Huff Po...prove you are neutral...that you will allow parents to ask the tough questions without censorship. I don't mean cussing and the like...I mean the hard questions that every doctor wants to avoid at all cost. Do it, make me a believer in free press again. Make me a believer that the drug companies and doctors don't feed the media what they want printed. Please I'm begging you. Be a beacon of truth in this whole mess. Won't print this either but I know you'll read it. But I still dare to post it.
This was a comment from the 2 or third page. Of course I'm rileysmom on there too. This is in response to the jerk that said my comment was derogatory and repulsive because I asked the doctor was what the difference if Jenny made money from autism when she (doctor) was making money from vaccines. What's the difference?
You can post this if you want to or not Kim, I'm just so erked by Huff Po's censorship of the tough questions. Protect the precious doctors at all cost...just don't worry about the kids.
Posted by: rileysmom | May 29, 2009 at 09:21 PM
done, commented on and thought about all night. I'm afraind, very afraid. The future's so black and white.......it's gray!
Posted by: Heather C | May 27, 2009 at 03:51 AM
I do not want to read this book. I do not want my son to have Autism. But, I will read this book in the hopes that I will find that my paralyzing fear for my son, as he soon becomes an adult will be unwarranted.
I will not hold my breath.
God bless the siblings of all of our affected children. They will need it.
Posted by: K Fuller Yuba City | May 26, 2009 at 11:08 PM
I am about two thirds of the way thru this book and, agree or disagree with the author, it is a breathtakingly honest portrayal of his life and his family's life -- no holds barred. I find the story a testament to Noah and the family's dedication him (even when it may have been "easier" in some respects to not be so dedicated to him (and when many families saw no options other than institutionalizing their children)) at a time when there were so few options available to families.
Posted by: Kim Mack Rosenberg | May 26, 2009 at 10:42 PM
"I guess when you can't talk, tantrumming is one of the few ways to communicate".
Wow...pretty damned astute for a boy of 13 or 14. What a great and loving brother. I sometimes wonder about the day when Gage is going to realize there is something very different about his older brother. On that day, he will become the 'eldest'. I both dread that day and look forward to it.
Posted by: Julie Swenson | May 26, 2009 at 05:11 PM