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Post by Jackie on Dec 24, 2004 9:40:48 GMT -5
ok friends...help me out here...I dont get into the literature about DS the way I used to.....and as I have posted my neice is possibly having a baby with DS next month...strong possibility.
I went to my library and found what used to be considered a good book ...Babies with Down Syndrome...but my copy is 1995 and when I thumbed thru it it seemed...well...rather bleak.
I think its important for the first book someone reads not to be overwhelming....I think the desire for more knowledge sort of comes a few months later.....
I have the new parents packet from NDSC and perhaps that's enough ...but I like books with pictures ...etc....although my neice has been around Emily and her crew of friends most of her life.
I also want something good for my sister to read....she knows mostly ...what I have told her...never read up on DS herself.
Personally I think the book Choosing Naia is excellent as they use the info the NDSC gives out in it....I remember when reading it thinking that besides being a good story about 'choices' ...that it was also an excellent text on DS as well.
Thanks in advance and Merry Christmas
Jackie mom to Emily 24
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Post by momofrussell on Dec 24, 2004 12:11:03 GMT -5
Jackie, the link I put here is for the book I bought when I had Russell. My version is from 1995 but I was reading and it's been newly revised, complete with 1997 IDEA stuff. I truly liked this book. It's called: "A Parent's Guide to Down Syndrome: Toward a Brighter Future" www.amazon.com/exec/obidos/tg/detail/-/1557664528/103-0747338-5887016?v=glanceThe title alone is positive!!!  I personally didn't find it bleak and there is feedback on Amazon which gave pretty good reviews! I also like the Woodbine book "Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents" Now, I personally loved this book and have read most of it when Russell was just born... BUT... it is NOT a book for the neurotic and hypocondriact type parents LOL. Some will read this book and think their child DOES or WILL get things in this book... I personally did not. I felt it was a good reference tool because a typical Pediatric medical book doesn't go into great detail the things that may or may not effect out children. If you think they can handle this book... I'd highly suggest this one. If you think they would be too overwhelmed with it, hold off for a few years! LOL Good luck! A. |
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Post by SuziF on Dec 24, 2004 15:57:54 GMT -5
Jackie darlin', Dr Cohen's group gives the"Babies With DS" in their packet & I also really like the Gross Motor Skills book (that whole series in fact) But, if you really want a positive, pick me up book for the new parents & your sis, I suggest this book "Common Threads"~ you might recognise a story in there  Suzi |
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Post by Debi on Dec 24, 2004 16:36:11 GMT -5
Jackie I have seen some excerpts from the video about Babies w/ Down Syndrome from birth to l8 mos. and I have to say it is EXCELLENT. I think for very brand new parents it is the best cause it's very very postivie (with videos of our kids now right there, that HAS to be postivie ;D) and covers all the bases ~~good and bad~~for those first few months. It is the one thing I wish I 'd had right away. Trying to remember the exact title~~can't!! It's gotta be easy to find online . It's the only thing of it's kind ; I think it's even been mentioned on this board a while back. I think it's Burberry productions if that helps. |
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Post by Jackie on Dec 25, 2004 9:43:00 GMT -5
OK...thanks a lot....I will order some of these...then if it turns out the prognisis was wrong....will donate them to our group...keep suggestions coming...I know we have had this thread before ...but I didnt need it then.....
Jackie
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Post by laurasnowbird on Dec 25, 2004 22:34:25 GMT -5
Debu, Great minds think alike! I was going to suggest the same thing, and also couldn't remember the title, and didn't have time to look it up. It is called "Down Syndrome: The first 18 months", and is directed by Will Schermerhorn of Blueberry Shoes productions. Here's the "blurb": "Woodbine House is very pleased to bring you this video, created by Will Schermerhorn, and filled with adorable images of babies with Down syndrome, inspiring stories of parents, and practical information from the leading Down syndrome experts. DOWN SYNDROME: The First 18 Months is a reassuring and realistic introduction to the unique joys and challenges that children with Down syndrome bring to their families during the critical first 18 to 24 months of life. Will Schermerhorn was inspired to make this video after his son with Down syndrome was born and he observed his wife’s relentless pursuit of information that would comfort and empower. He interviewed thirteen leading medical and developmental experts on Down syndrome--–Libby Kumin, Ph.D., CCC-SLP, Joan E. Guthrie Medlen, R.D., L.D., Patricia C. Winders, P.T, Dr. George Capone, Professor Sue Buckley, Dr. William Cohen, Dr. Allen Crocker, Sarah Rosenfeld Johnson, and Dr. Sally Shott--–on a variety of issues covering: Newborns: diagnosis, health care, breastfeeding, heart defects Health Concerns: parent-professional relationships, ear, nose, and throat, nutrition and feeding, dental Therapies: language and speech therapy, physical therapy New Expectations: the impact of having a child with Down syndrome on the family and the world Heartwarming footage of young children with Down syndrome is interspersed with the interviews with parents and experts. Throughout, perspectives provided by veteran parents who share their joys and concerns will reassure new parents. DOWN SYNDROME: The First 18 Months is an inspiring and educational video for parents who want to know more, and an excellent tool for support groups, medical professionals, and libraries to support families. " I found it on Amazon.com and it showed that they had used and new for as low as $25.00. We work with Sara Rosenfeld-Johnson, and her methods and have made a HUGE difference for Ethan as it relates to feeding AND speech. Most of the people on this tape I've met at the NDSC conventions, so I'm sure you have as well, LOL! I haven't seen this myself, but I've heard great things about it. Here's a link to the Amazon "used and new" page. I have bought books using this feature, and they have always shipped fast, and been in great shape! www.amazon.com/gp/product/offer-listing/B0001I54PM/ref=dp_pb_a//104-2088150-5957550?condition=all |
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Post by snickers71801 on Dec 26, 2004 7:22:14 GMT -5
Hi, I have a book at home (at work right now) and will look when I get home to see what it is called. I was given the book by my daughters Early Intervention teacher for Christmas about a year ago. It is great and I really enjoyed reading it. It is simple to understand, but yet has all the medical terms and such in it. It gives you a feel for everything. It also has growth charts in it that compare the typical child to a child with downs and for boys and girls. It has helped me with many problems, that I would have panicked about. It gave me an understanding about pretty much everything. Another cool thing, it has the history of down syndrome in it. Like when they discovered and named down syndrome, how they were treated in the earlier days and such. Very interesting and good read. I will try to find it and let you know what it is later.  |
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Post by Debbie on Dec 28, 2004 17:21:59 GMT -5
Jackie,
Your story about your neice, moves me to want to write something but what? What can I do to help these parents who find out that their baby has Down syndrome? It must be hard but, I want them to see that there is hope. How can I help?
I am older than your neice, she is what? thirty one? I am guessing. Please let me know if I can do anything at all. Would an e-mail help?
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Post by wrblack on Dec 28, 2004 17:41:53 GMT -5
Hi, Jackie, I think my first two picks for your niece would still be Babies with Down Syndrome: A New Parents' Guide, 2nd ed. by Karen Stray-Gunderson. And Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Beck. First is good packaging of basic info for new parents, and second is a good read, a little strange and mystical maybe, but still a good read. You could go to Dr. Leshin's site and his lists of recommended books www.ds-health.com/books.htm and order from B&N through there, and help support his site. Regards, Bob (trying to keep my day job as a librarian) |
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Post by Jackie on Dec 28, 2004 17:42:09 GMT -5
Debbie...nothing right now will help....this is just something they will have to sort of get through in the next few weeks...then just reminding her about you will certainly help...and maybe even talking to you once the baby comes...and who knows...it might not even be DS ...maybe something else...maybe nothing...but I want to be prepared. I certainly think that if any parent could meet you before their baby comes it would greatly ease their apprehension....and I think the two of you have already met at one of the parties.
And...I really do think you should get that book written.
Jackie
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Post by Jackie on Dec 28, 2004 18:58:19 GMT -5
I went to Barnes and Noble today...and the only book they had was the Babies with Down Syndrome...same 1995 copyright as mine?  I am sure the info is good...I just think the pics in the book look sort of dated and it cant have the latest info on inclusion in it if its 10 years old...but will pass it along cuz its easy to read. I also got a paper back copy of CHOOSING NAIA. I remember when reading it how well it really tells the 'story' of DS....as it goes along...and thought really it was as good as any text out there on the subject. Jackie |
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Post by Cbean on Dec 29, 2004 22:02:58 GMT -5
Debbie - I second what Jackie said. I always love when you post. Write that book! I'll be first in line for a copy!
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Post by steffipoo on Dec 31, 2004 0:47:51 GMT -5
jackie a lady whom I think is amazing here in Los Angeles just wrote a book called..."But will she be a Brownie?". written by mom and educator Deborah Bogen regarding her daughyter Elizabeth. Elizabeths journey from infancy to adulthood is shared by Deborah with an open heart and includes many instances that will take parents of an older child back to a time long past and will prppel parents of a young child forward with hope and encouragement. New parents will find many wonderful ideas to help encourage and educate their child from deborahs' experience as an educator and a parent. The book also includes space for the reader to write their own notes and begin their personal journey with their child. Its available for purchase at www.debroahbogen.comHer daughter is about 8 years older than Emily and is an amazing lady who is such a great speaker and has such a way with words. Her mom taught her well and these are the 2 I MOST admired when I met them at a new moms tea after Liv was born. No nonense down to earth people . You'd love em... HUGS Steff |
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Post by steffipoo on Dec 31, 2004 0:52:35 GMT -5
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Post by ourangelalicia on Dec 31, 2004 2:17:55 GMT -5
I would definitely get her Common Threads...another book I started reading a few months ago is Nobody's Perfect, Living and Growing with Children who have special needs. It depends on the person though...it's a great book about the grieving process, but it can also make them go into a pity party of they have the personality for it.
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I personally didn't find it bleak and there is feedback on Amazon which gave pretty good reviews! 
I am sure the info is good...I just think the pics in the book look sort of dated and it cant have the latest info on inclusion in it if its 10 years old...but will pass it along cuz its easy to read.