Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 , Over the years, I have learned that the most comfortable wording for us is to tell people that Max has -Silver Syndrome, which means he has trouble growing like other kids. That usually makes everyone satisfied and comfortable. Even Max uses that wording now if people ask him (after he is ready to hit those who are rude enough to point out that he is short and they don't believe he is really 16). I have found that short and sweet is the best way to handle these situations. But for those who press on, I will go into a quick explanation of their bodies not using their own growth hormones in a sufficient way. I also tell them that our kids have poor appetites and can be really tough to feed, that they don't have that " hunger button " that we do. After these few words, most are happy and move on. I shy away from terms like disorder because they sound so ominous and negative. I believe that it is important to feel comfortable using the term RSS outloud and letting your immediate family hear it and use it, too. If YOU are comfortable, then they will be, too, and so will LeeAnn when the time comes. Just my 2 cents... Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Thank you for the response. It makes perfect sense. But truly, with an interracial family and a child with autism at home right now, I am no stranger to rude questions! We are always amazed at what people think is OK to say. I feel armed and ready! I am reading a book called Little People that seems pretty good. Have you all read it? I am a big time reader and would love to hear what else is a good read. Have a great evening. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi , I'm le. My son Coby has RSS and he just turned 2 last week. First of all I have to say, you are a brave woman with the patients of an angel to have 5 children under 5. hehehe my twin 2 yr olds are coming close to taking over my house and I have the help of my 2 older kids. lol Anyways, back to the issue at hand. Jodie summed it up very nicely. I just wanted to add my congratulaations. le, mom to: Shye almost 10, Brock almost 8, and Coby(rss) & Carlee NOW 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Someday we should compile all of the rude questions that people have asked and see just how rude people can really be. Then again, I've had many people who have been compassionate and understanding. What I really appreciate, however, is those who just leave us alone and let us do our own thing. I know it is natural to be curious, but curious and rude walk a fine line. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 - first of all congratulations on the official adoption process. LeeAnn is very lucky to be going to such a wonderful family. , now 13 months, is still wearing 3-6 month clothes - I don't know if this is " normal " but this is how she is. Good Luck - keep reading this listserve - you will learn tons. Jane, mom to - 13 months 13# 15oz - 26 " , just started Periactin and Zantac, also on Peptamin jr. Gavin 4 yrs, Aidan 2 yrs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 First of all, as a mom to 2, I cannot believe you are going to have 5 under the age of 5! YIKES! Hopefully you have some help, and apparently patience with no end.... Anyway, my daughter Emerence is officially SGA (small for gestational age, we call her Small Girl with Attitude) and possible mild RSS. They both fall under the same group at MAGIC and the treatment is the same. Either way, she is mild. She was 37 wks, 4 lb 6 oz, 16.25 inches. She eats but not a lot at a time and she eats (sample menu below ) breakfast (1/3 bottle of Dannon frusion yogurt mixed with whole cream Stoneyfield yogurt and maybe a few cheerios), snack (some goldfish/crackers and juice), lunch (1/4 - 1/3 grilled cheese sandwich, milk), snack (1/2 cup preportioned pudding or several thin apple slices, milk), snack (more yogurt drink), dinner (sm. amt. meat/rice or meat/pasta and peas or carrots), snack (slice Amer cheese and milk) and any other time I get anything into her. She is 20.5 mo and weighs 18 lb 11 oz, 28.5 inches. She just started moving into 12 mo or 12-18 mo clothing, depending on the brand but onsies are smaller. Most of her stuff is Old Navy, it wears well (she was wearing the same size forever and ever!) and will last however long your newest ray of sunshine might need them. You should definitely plan on feeding her quite a bit - others here can talk about night feedings to ward of hypoglycemia. It sounds like Emerence eats a lot (and she does compared to most RSS kids!!!) but not anywhere close to what the other kids her age in her daycare class eat. Have you started to talk to Early Intervention in your state yet? I think you mentioned you have one child with autism so I'm sure you are aware of this program. good luck, you are brave, I'm so excited someone can love her as much as she should be loved... , mom to 4.5 (closing in on 5!), Emerence 20 mo. SGA/pos RSS > Hi everyone, > > Now that we are " officially " in the adoption process I want to come back here > and LEARN about RSS. I am reading like crazy (any recommendations?) and want > to be as ready as I can. > > LeeAnn is a year old next week and is in 6 month clothes. Is that pretty > normal? She looks very healthy in the videos. We are really excited! > > I also am hoping you can help me learn PC terminology for RSS. As an > example, we have two kids from Korea and I have had to teach friends and family about > wording. I can't tell you how many people have asked if we can have " kids of > your own " !! They are all ours, he he. > > So basically, HELP us!! We want to be ready to be great parents to LeeAnn > and just need to learn. > > Thank you friends, > > Mom to Patty 5, Reagan 3 1/2, almost 3, 1 1/2, and LeeAnn, age > one, RSS > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2004 Report Share Posted October 25, 2004 hi jamie!!! i am soo excited for you and your family!!! size 6months is " normal " for an rss child. my son christopher will be 4 in dec and he wears a size 24 months-2T. he is currently 25lbs 13oz and 36.3 " tall. did you join magic yet? www.magicfoundation.org they can provide you with a great amount of info for free!!! feel free to email me at jlcals2003@ yahoo.com (no space after @) jodie c. > Hi everyone, > > Now that we are " officially " in the adoption process I want to come back here > and LEARN about RSS. I am reading like crazy (any recommendations?) and want > to be as ready as I can. > > LeeAnn is a year old next week and is in 6 month clothes. Is that pretty > normal? She looks very healthy in the videos. We are really excited! > > I also am hoping you can help me learn PC terminology for RSS. As an > example, we have two kids from Korea and I have had to teach friends and family about > wording. I can't tell you how many people have asked if we can have " kids of > your own " !! They are all ours, he he. > > So basically, HELP us!! We want to be ready to be great parents to LeeAnn > and just need to learn. > > Thank you friends, > > Mom to Patty 5, Reagan 3 1/2, almost 3, 1 1/2, and LeeAnn, age > one, RSS > > > Quote Link to comment Share on other sites More sharing options...
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