Showing posts with label books. Show all posts
Showing posts with label books. Show all posts

Saturday, October 13, 2012

31 for 21, Day 13 - 2012

Found this article and wanted to re-post it here.  I love to hear stories that others have to share about their journey.  Especially the ones that have paved the way for us new parents. 


90-year-old mother shares experiences as inclusion advocate for son with Down syndrome in new book



Marjorie Sullivan Lee spends time with her son, Kevin, during a trip to Seattle in June.


By Mary Beth Versaci, mversaci@shawmedia.com

In December 1960, Marjorie Sullivan Lee's sixth child was born. After five other children, Marjorie and her husband, John, were used to the routine. But what made this time different from the rest was the diagnosis given by their pediatrician the day after Kevin was born — their son had Down syndrome.

The doctor explained their options, which at the time meant telling Sullivan Lee she could send her son away. She immediately told the doctor, “No.”

This experience, along with others involving her son, Kevin, is described in the book “Bloom Where You Are Planted,” which published this year.

Through this book, Sullivan Lee has been able to share the message that "life with Down syndrome is OK" with parents of children with Down syndrome and those in the community.

“I want to help others learn that people with cognitive disabilities want to be a part of — rather than apart from — the rest of the community,” she said.

And Sullivan Lee has spent the last five decades searching for this inclusion both in the educational system and the community.

Kevin went to a school for people with disabilities away from his neighborhood until he was 17, despite efforts by Sullivan Lee and her husband to keep him closer to home.

The Education for All Handicapped Children Act — the predecessor of the Individuals with Disabilities Education Act, or IDEA — was passed in 1975 and required that children with disabilities be educated alongside peers without disabilities whenever possible, as long as that environment could provide the education they needed.

Based on this new law, Sullivan Lee and her husband initiated a due process procedure that won Kevin the right to be educated in his own neighborhood school with peers who were not disabled.
Kevin was the first person with Down syndrome to graduate from Glenbard East High School in Lombard.

Sullivan Lee then helped found the Parents Alliance Employment Project, which partnered with what is now called the workNet DuPage Career Center to provide credits for employers who hire people with disabilities, creating a way for people with disabilities to get “normal” employment.

Kevin has a volunteer job shredding documents at a government office, which he has been doing for about 20 years. He also takes physical education and individualized reading courses at the College of DuPage.

Even with the improvements Sullivan Lee has seen and fought for during her time, she said not all problems in the educational system and community have been answered; there still are areas in need of improvement and advocacy.

She wants parents of children with Down syndrome to know their loved ones can have a “very nice, happy, comfortable life while living with Down syndrome,” something Kevin has shown throughout his own life.

And just as his mom has enjoyed life with him, Kevin has enjoyed life with his mom.

Kevin said he is proud of the book his mom wrote for him, a book that’s described on the cover as “a story of family love for a special person.”

In December 1960, Marjorie Sullivan Lee's sixth child was born. After five other children, Marjorie and her husband, John, were used to the routine. But what made this time different from the rest was the diagnosis given by their pediatrician the day after Kevin was born — their son had Down syndrome.

The doctor explained their options, which at the time meant telling Sullivan Lee she could send her son away. She immediately told the doctor, “No.”

This experience, along with others involving her son, Kevin, is described in the book “Bloom Where You Are Planted,” which published this year.

Through this book, Sullivan Lee has been able to share the message that "life with Down syndrome is OK" with parents of children with Down syndrome and those in the community.

“I want to help others learn that people with cognitive disabilities want to be a part of — rather than apart from — the rest of the community,” she said.

And Sullivan Lee has spent the last five decades searching for this inclusion both in the educational system and the community.

Kevin went to a school for people with disabilities away from his neighborhood until he was 17, despite efforts by Sullivan Lee and her husband to keep him closer to home.

The Education for All Handicapped Children Act — the predecessor of the Individuals with Disabilities Education Act, or IDEA — was passed in 1975 and required that children with disabilities be educated alongside peers without disabilities whenever possible, as long as that environment could provide the education they needed.

Based on this new law, Sullivan Lee and her husband initiated a due process procedure that won Kevin the right to be educated in his own neighborhood school with peers who were not disabled.
Kevin was the first person with Down syndrome to graduate from Glenbard East High School in Lombard.

Sullivan Lee then helped found the Parents Alliance Employment Project, which partnered with what is now called the workNet DuPage Career Center to provide credits for employers who hire people with disabilities, creating a way for people with disabilities to get “normal” employment.

Kevin has a volunteer job shredding documents at a government office, which he has been doing for about 20 years. He also takes physical education and individualized reading courses at the College of DuPage.

Even with the improvements Sullivan Lee has seen and fought for during her time, she said not all problems in the educational system and community have been answered; there still are areas in need of improvement and advocacy.

She wants parents of children with Down syndrome to know their loved ones can have a “very nice, happy, comfortable life while living with Down syndrome,” something Kevin has shown throughout his own life.

And just as his mom has enjoyed life with him, Kevin has enjoyed life with his mom.

Kevin said he is proud of the book his mom wrote for him, a book that’s described on the cover as “a story of family love for a special person.”

Friday, October 29, 2010

31 for 21, Day 29: Book Signing

Maya and I went to our first book signing together.  I was so excited to have Jagatjoti Khalsa sign our I'm Down with You, book!  Maya was really very patient the whole time and she was hugging quite a few people tonight.  We hung out in the kids section after and Maya found a shaker she couldn't let go of.  It was really cute the way she was walking around the entire bookstore with that shaker.

If you haven't been able to check this book out I highly recommend it.  I posted earlier about the documentary that Jagatjoti is working on, but the book is available now.  When I first opened the book I was amazed by the stunning photography.  All those gorgeous faces so elegantly captured.  I haven't been able to read any of the text yet but I'm sure it is well written also.

Please do check out his site, http://www.imdownwithyou.com/

Jagatjoti signing Maya's book.

Maya says she's gonna me in the next book.  =)

Hanging out.

Thanks to Lily for loaning her pom pom. Maya loved it.

Tuesday, October 12, 2010

31 for 21, Day 12: I'm down with you

I know I've mentioned this book before, when it was still in progress. Well now the book is here and it is available. You can purchase it on Amazon.   Jagatjoti S. Khalsa is also doing book signings at different locations. I found out last week that he is coming here for a book signing at the end of the month.

To go along with this book they are working on a documentary.  Here's the latest trailer.  Honestly it brought tears to my eyes.  

Please do check out their website.  Beautiful photographs are previewed on the site.  Amazing, just amazing work.  It shows the beauty within us all.






Monday, April 12, 2010

down with you book, pre-order now

i'm spreading the word because this project seems so wonderful..."down with you" books are up for pre-order with a big discount via The Other Person is You foundation.

See message below from Jagatjoti Khalsa:

We are offering to our early supporters like you a Pre-Order discounted rate of $19.95 which is $10 off the regularly price and when they are ordered during the next month, I will be signing every one's copy.

I would like to humbly ask to have your support promoting the early purchase of the book during the next month leading up to our press run. Please send out notes to your friends, family, organization list and using your twitter and Facebook to offer to your supporters a pre-purchase discount of $10 a book which means the book will be $19.95 for a large format hard cover book and I am going to sign all books ordered during this next month when they are ready for shipment. We are going to use part of the money to help finish the documentary as the good people at HBO and Showtime along with TLC are waiting a rough cut to view and this is how we are funding it.

Here is the link to click to purchase:

http://theotherpersonisyou.org/book.html

I'm Down with You will ship in August. All profits from sales of this book on this website will be donated to the organizations which support all aspects of the Down syndrome community. From sales on this site, The Other Person is You{foundation} will donate a minimum of $5.00 per book. We have compiled a list on the website by state to select from which will allow you to direct money from your book purchase directly to the organization you support.

Sunday, January 10, 2010

Tuesday, May 26, 2009

a special kind of hero

two weeks ago i ordered the book "A Special Kind of Hero: Chris Burkes' Own Story". it has been on my list of books to purchase and read since maya was first born. of late, i was really feeling the need to read this book because i want to know what a person with down syndrome thinks and feels about having down syndrome. i also want to know how other parents have guided their children with down syndrome to be extraordinary people.

i remember watching Life Goes On, in the early 90s. i really enjoyed the show. i didn't realize it then, how amazing it was that there was a tv series that featured a person with down syndrome as one of the main characters. now, it seems i look all around for actors, characters, stories or everyday people with down syndrome. i'm glad that so much awareness has been brought out in this day and age. advocates like Chris Burke are an inspiration to say the least.

yesterday morning i spent about an hour reading this book. and i have to
tell you that this is an amazing thing. most of the time i spend my time reading at night because it just seems that's when i have time. i have so much to do that i just don't have time to read during the day. i'm only a few chapters into the book but i really love it so far. the storytelling is right on. it feels very engaging and down to earth and at the same time informative. i'm looking forward to reading more of it.

if anyone who is reading this blog, knows of any other books that they can recommend....well please do let me know. thanks, j.

Saturday, July 19, 2008

road map to holland

i've only read a handful of books from beginning to end.  don't get me wrong i have tons of books, many of them follow whatever interest i have at any given time.  probably my largest collection is between art books and meditation books.  now it seems i'm building another kind of collection, you guessed it, books that have anything to do with down syndrome. the majority of my time with books is about learning something.  i don't usually find myself reading fictional books or biographies.  i do however love to skim through books that offer information, something i can use to better my life.  but lately among my stash of educational books on down syndrome i have been starting a collection of books that tell a story.  

the book that i can say i've read from cover to cover just recently is  Road Map to Holland: How I found My Way Through My Son's First Two Years with Down Syndrome, by Jennifer Graf Groneberg.  i have to say i did most of my reading while expressing my breast milk for maya.  at first it was just something i could do while sitting there for 20 or so minutes.  but after a while it became something i would look forward to because the story
 she tells, well i could relate to.  there were scenes in the book that felt just like my life.  and it gave me things to think about.  i've been thinking that this is what makes a good book.  of course i've been wondering if anyone who does not have a child with down syndrome would read this book. but there must be a big audience because i noticed while doing my search for books about down syndrome that there are a lot out there.  the range covers personal accounts of parents with children with down syndrome, children's books explaining down syndrome, to more technical books on how to help your children excel.  it's very encouraging to see all these books.  

i really enjoyed road map to holland because the author just seems like a regular person, just like me.  and the sharing of her experience really helped me not feel so alone.  she also has a blog named pinwheels which i try to read when i get a chance.