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Post by Jessie on Apr 15, 2008 15:25:28 GMT -5
Our support group used to give the "Babies with Down Syndrome" book, but some of our more seasoned members don't really think too highly of it as far as giving it to new parents.
So . . . we have some of our new parents looking over some books to give us feedback - but what book would you recommend giving to someone that's just beginning their journey?
Thanks.
Jessie
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Post by Googsmom aka Jennifer on Apr 15, 2008 16:34:44 GMT -5
Gifts!!!
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Post by momofrussell on Apr 15, 2008 16:52:21 GMT -5
Ok... this is my take... you shouldn't take what us (or them) seasoned ones think about that book. New parents NEED a good "all about DS" book and I really see nothing wrong with it. Yes, now that we are "seasoned" and CRITICAL we see all kinds of things wrong... we are very critical bunch dontcha think?  LOL I say the new parents need something like that book. That book you mentioned was the book I got from the Library when I was pregnant with Russell and it let me know everything was going to be ok. That was NOT the book I bought for myself though. I bought Dr. Sig Puschel's book, which is the same premise, all about DS. I can't think of the name right now and have tried to google it and can't come up with it. I think Dr. Puschel is a very positive dr who has personal experience with the DS. Maybe that book would work better. I think something like Gifts is a great idea too.. but it's more of an anicdotal book and I think parents need the educational side of DS also. So... tell the seasoned parents to lightnen up LOL A. |
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Post by logansmom on Apr 15, 2008 18:52:02 GMT -5
When Logan was born, we were given at least 3 copies of "Babies With Down Syndrome." One was from the hospital, one was from Early Intervention, and one was from the state Down Syndrome association. It's a great book, but we really didn't need 3 copies (although I did send one of the copies to my parents). A copy of "Gifts" would have been nice.  Kim |
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Post by elizabethsmom on Apr 15, 2008 20:14:33 GMT -5
This is a subject Joby and I just discussed! We, too, were given the "Babies with Down syndrome" when we had Elizabeth. These were our feelings: although it was a great reference, we did NOT need to know all of the possibilities of what medical conditions she could have...what could be wrong...what our kids are more at risk for....etc. And the stuff we did need to know, we didn't need to know right then when we were still in the NICU. We needed encouragement..plain and simple. We wanted to hear about parents that thought their child was a blessing, not a burden! So...we both thought we would rather have been given the book gifts after her birth than the one we received. They could have "recommended" that book to us for when we got home and settled, but we would rather have read all of the wonderful anecdotes from the parents in "Gifts" at the time. So...that's my 2 cents...and that's the book we give out. (we also received a copy of the "bwds" from early on...so we could have gotten it that way.
JMO
Sheryl
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Post by dannysmom on Apr 16, 2008 11:28:57 GMT -5
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Post by momofrussell on Apr 16, 2008 11:52:41 GMT -5
YES Lisa!!! Good grief I was on Amazon and for the life of me couldn't find the darn thing! LOL I was at work and my book was at home so I was no help to myself!!!! I hear he is a great doc!!! Did you like meeting him?? Did you like him? I love this book!!!
A.
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Post by dannysmom on Apr 16, 2008 12:20:07 GMT -5
A, he is the most amazing and loving man. His son had Ds and passed away a few years ago. When he came to visit us in the hospital....he brought such a sense of hope, comfort and love. He made Dan and I feel like our lives weren't over....yet just beginning. He talked to us about his heart...and how so many kids do have heart defects but live long and healthy lives. We see him yearly at his office in Providence. Our next visit is in June when Daniel turns 3. He is probably one of the brillant men alive. His office walls are COVERED with awards, certificates and degrees. He also was the one who gave us Daniel's karotype and really explained to us what those 3 little chromosomes meant. Meeting him was most definitly a turning point in our lives. Not only is he a doctor...but a parent....so he understands in a way that many doctors don't. He keeps a high level overview of Daniels needs. He knows are regular ped and she is very comfortable with Daniel's needs...but if she needs particular guidance...she contacts him for more Ds specific issues. I urge everyone to meet him if they can. He is just wonderful!!
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Post by wrblack on Apr 16, 2008 13:54:46 GMT -5
Well, I still like Babies with Ds : a new parents' guide. That was the book the really crummy genetic counselor sent over with copy of Charlie's karyotype, which was the best thing she did for us. We've also got Dr. Pueschel's A Parent's Guide. But one of first books we read was Expecting Adam by Martha Beck, a bit odd and a bit old now. I thought there would have been a 3rd edition of Babies with Ds by now. Thought Dr. Leshin had been called in to revise and tone down a lot of the medical info, make it a bit less scary. But that doesn't seem to have happened yet. Don't remember if Babies with Ds comes with warning like Preemies : an essential guide does. It says take in small doses and read only the parts you need. Meaning, if your kid is not dealing with NEC, then you really don't need to be reading about NEC just now. If Babies with Ds doesn't have some warning like that, it needs one. But still, best single volume guide and introduction to life with Ds, IMHO. Could query Dr. Len or Woodbine House about status of new edition. And too late for us, but I've heard good things about Down Syndrome: The First 18 Months DVD. Hmm, maybe we need WikiBabieswithDs. There isn't one, is there? -- Bob www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htmwww.ds-health.com/books.htm |
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Post by alisonzmom on Apr 16, 2008 20:29:12 GMT -5
Our local parent group has just in the last year or so looked at this very same issue. The dozen or so of us on that committee decided to do "Gifts" to new parents. We also include in our packet some "our favorite books/websites" and Babies w/DS and Dr Prueschel's books ( as well as UnoMas 21!!! ) are listed.
Hey A - didn't you realize that Dr Prueschel was staying on the same floor as Susan, Robin, LauraSnowBird and I in KC last summer!!! He was like 3 doors down from me! I talked with him briefly on a number of the elevator trips and was struck by what a gentle, kind and loving "aura" he has! Oh and Kristi said to say hello, ran into her today at the local roast beef sandwich/ frozen custard emporium!!!
Barb
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Post by laurasnowbird on Apr 21, 2008 12:51:31 GMT -5
I wasn't crazy about the Babies with Down Syndrome book, and that isn't my retrospective opinion, but the one I had when I purchased it right after Ethan was born. Now that I'm "well-seasoned" (gosh, makes me feel like a Cajun food, LOL!) I'd probably like it even less. I felt there was too much emphasis on medical negatives, as Sheryl mentioned.
A friend of the family purchased the book "Common Threads" for us, and I LOVED it. It is a beautiful, hard-cover book filled with pictures of gorgeous kids looking like.....normal, happy, well-loved children! I think I really needed to see kids with DS just doing kid stuff, and I know that we've often heard from new parents how helpful they find our photo album, so it's kind of the same thing. It is an expensive book, but perhaps you could find some at half.com?
P.S. Just looked on half.com, and they didn't have a great selection, but Amazon has more in their used section!
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Post by momofrussell on Apr 21, 2008 13:15:17 GMT -5
Gee Barb NOW you tell me! LOL
A.
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Post by lespring on Apr 21, 2008 15:16:28 GMT -5
Gifts would be my first choice. Babies with DS second, but ONLY if they've updated it! The last update that I was aware of was before Angela was born, and she's going to be 12! Remember the rule...nothing older than 10 years.
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LOL I say the new parents need something like that book. 
