dear auntie you cant make them push for a diagnosis,but you can be supportive.Chances are they already know what is wrong,and cant bring themseves to talk aboyt it.Denial.It isnt easy when your child isnt part of the so called norm,be patient and loving to them,no matter what happens or what the problem may be.There are alot of other things that it could be,or it might be nothing at all.I d know one thing,when there is something wrong with your child,you would give your life to make it better.I pray every thing works out for the better with your faimly Kim P My son has down syndrome and is 13 mths old(and doing great)

I hope someone out there can help me. I have a 4 1/2 year old nephew. There was something different about him since day one. He has never been diagnosed with anything. His parents would never admit there was a problem until recently. When he was a baby his head was very large. His eyes are slanted and one of his ears is shaped oddly. He was much slower in development in general. He did not move around much. His speach is very delayed. At 4 1/2 he only speaks 2 words at a time. They worked on potty training for a long time. They finally have him off diapers during the day (he still wears them at night). He likes to keep to himself, he is 1 of 4 children. He does not interact with the other children very much. I am trying to find out how to help my nephew. I may be barking up the wrong tree. I do not know for a fact he is DS. Wouldn't a doctor have diagnosed this already during a check up? I know that they have not brought up any of these concerns with a doctor. I have encouraged them to go in and have a doctor evaluate him but they keep putting it off. He is suppose to start kindergarten next year and I wanted him to get help before that so he wont be to behind. Any suggestions? Thanks, A concerned Auntie

I spelled my name wrong on my address y name wrong on my e mail addrss

does anyone have any information on the supplemental and nutritional programs that are out there.I have heard only a little bit,but if there is something to it(increasing cognitive function,decreasing developemental diasabilities)I would love to hear about them.Our doctor that we have for Patrick since we moved isnt helpful .Patrick is 13 mnts.

Responding to MICHIF re: boils---(ugh) Hi, I have a 20 year old son with DS and we have been having problems with boils for the last couple of years and have been under the treatment of a dermatologist. As you probably know, boils are an infection on the skin but surprising to me, our doctor told us that dry skin really aggravates the problem. Drew has problems on his butt and groin and yes, his private parts too sometimes. He never complains about anything so he waits usually until they get huge and are really hurting him. His modesty and pride give in and he comes and tells me. What I do is put him in a very hot bath for about 20 minutes. That is usually enough when they are at the worst to open them up so they can drain. Then use triple antibiotic ointment and cover them. That usually does the trick. The dermatologist has put him on long term antibiotics (Minocycline). He started taking 2 a day and once the med. level got built up in his system we cut it back to a maintenance dose of 1 each day. He also told us not to use antibacterial soap (only dove) because it kills the good bacteria on the skin and makes the problem worse. He said antibacterial soap is not recommended for anyone. Surprise to me!! He also likes Eucerin Lotion and prescibed something called Lacticare (has cortisone in it)lotion. Poor Drew, he even had to go through a colonoscopy because he would have boils that burst and I would find blood on his underwear when doing the laundry and we didn't know for sure where the bleeding was coming from. It's very surprising that he has never really had much problem with acne, because I think it can be realated. The antibiotics help take care of that too, I guess. The Minocycline is very expensive but we do have very good prescription coverage and only pay a $15.00 copay each time. I hope this has helped some. That's why this site is such a wonderful resource...to be able to help each other. My best to you and your son. Maybe we can chat sometime. Merry Christmas. Mary

This is in response to Denni - I know a little about modifications, what grade level are you interested in?

Why can't I use the chat room now I entered the chat room almost every day today it says it dosen't support my browser because I don't have frames:o( I am a mother of a two yr.old with DS and would love to chat with other parents !

I guess children with down syndrom always want to say " if you learn to do it, I can learn to do it"wish all of you best of luck!laila

I am including Cassidy in my prayers. I hope and pray all goes well for her. I also wanted to say something about Holiday giving, since it is that season, if you all don't mind... I'm not sure of the the rules in all states, but I think most people would be surprised to learn that in California (and I think in all states), food stamps do not cover such staples as toilet paper, diapers, soap, baby wipes, paper towels, laundry detergent. Did you know that? I really never knew that until I had a friend in need. State aid may help put food on the table, and pay part of the rent... but there is nothing left for such staples. I never knew that, until my friend was overwhelmed with free food and frozen turkeys.. but still had no way to afford laundry soap or toothpaste. I just REALLY wanted to put this suggestion out there.. when the food drive requests canned food... I think the people really in need would love to receive a package of diapers or a roll of paper towels. Is that such a luxury? Just my two cents. I'll bet you didnt' know there was no program to provide such things, did you? Forget the canned cranberries!! These people need diapers! Soap! Paper Products!!

My family will say a very special prayer for her !God bless you and yours !MelissaRyan DS 11-20-96

My new baby Cassidy, is having surgery for her VSD December 29th. Please say a prayer for her.Thank you.

anyone know anything as far as academic modifications being done in the classrooms in a reg. ed setting?

hey everyone i have amanda in an online beauty padgent, please go check it out and vote for her...she is the only one with downs competing,,, thanks http://babyzone.com/contest2/toddlervote.htm

Well, the votes are in on the new chatroom: Trash it! You voted overwhelmingly for the old chat program. Most people like the fact that you can leave a message about when you will return. I've removed the new page and you can go directly to the old chatroom again. Thanks for the feed back!!

hey susan, here is an idea that i use on all my kids,i put some vinegar in a little spray bottle (like the ones trial size hairspray comes in)you can get one from wal-mart, i keep it in my purse. if one of my kids uses inaproprate language out in public or at home i simply spay a few squirts in their mouth. it even works great when trying to teach a child to stop biting....good luck

Erin, thanks for the suggestion. If not pepper, maybe a drop of lemon juice. I have to do something and quick. Lisa used some of her colorful lauguage at the dentist office last week. Talk about embarassing!

Something I would really value others input on.... I have a son, Marcus (DS) who is 6 years old and currently in a "Severe learning Difficulties" school over here in England. I am beginning the long haul to get him into the local mainstream school. So here is my problem.. the Head Teacher at the new school would rather see Marcus in the younger class of 5 year olds, which only has 18 kids, rather than his "age appropriate" class which has closer to 30 kids. I can see the arguement for each class. What are other parents opinions/experiences? P.S. Am I the only one to be confused by the new chat room? Do I still have to be registered with "Xoom" who keep trying to sell me stuff?? Wishing everyone a very happy Christmas and New Year!!!!!

Something I would really value others input on.... I have a son, Marcus (DS) who is 6 years old and currently in a "Severe learning Difficulties" school over here in England. I am beginning the long haul to get him into the local mainstream school. So here is my problem.. the Head Teacher at the new school would rather see Marcus in the younger class of 5 year olds, which only has 18 kids, rather than his "age appropriate" class which has closer to 30 kids. I can see the arguement for each class. What are other parents opinions/experiences? P.S. Am I the only one to be confused by the new chat room? Do I still have to be registered with "Xoom" who keep trying to sell me stuff?? Wishing everyone a very happy Christmas and New Year!!!!!

Susan: My sister puts a shake of pepper on her kids tongue when he says something nasty. Just plain ground pepper, as in salt and pepper. She say he hates it, and that it seems less cruel than "washing your mouth out with soap" as our mother used to say. Does this approach seem inhumane or cruel?

I hope this is not a duplicate message (I'm not computer literate yet). Our beautiful 8 year old daughter has picked up some swear words and uses them freely. Has anyone else dealt with this problem? Any suggestions? Time out seems to work best but not always possible when away from home.

Mary, You are right. I guess Moms and Dads balance eachother out. As it turned out, Casey was very excited about his cool new bike. He climbed on it and tried riding for a few minutes. We let him decide when to take a break and when to try again. So far, not too much frustration... much to my relief. I'll still keep his little bike around and he can take his pick for a few months until he masters the big one. He had a great family party on Saturday night..but slept through half of it! Thanks for your response, I'm glad Scott pushes a little more than I would. I might have bought him another big-wheel, if it had been up to me!

Hi Michelle, I left you a message on the chat room but when I checked on it later it wasn't on. So I will leave it here. You were talking about the bike that you were getting for your son, Casey. Dads always seem to want to make their sons tough. Maybe it's to prepare them for what ever may be ahead of them. I think as Moms we want to protect our children as much as we can. Sometimes I wish I could keep Arnold three years old for the rest of his life. We don't want them to get hurt and we surely don't like seeing that disappointing look on their faces. It hurts us just as much as it does them when they fail at something. I remember when Arnold was in physical therapy, I use to cry because he had to work so hard just to do things that came naturally to children without DS. Things like crawling, rolling over, sitting up or walking. I remember Joy telling me that Arnold didn't realize just how hard he was having to work. To him learning how to crawl was just as hard for all kids. Our children will always have more challenges than most kids. It won't always be because of their disabilites but because of the way this world will see them. It will be these same challenges that wiil make our children stronger. Thank goodness Dads are there to help push us too. Man Arnold seems to be growing too fast. It seems like only yesterday that we brought him home from the hospital. Please tell Casey that I wish him a very,very happy birthday and with a Mom and Dad like his, he will never go wrong.

dear ellie, and diane thank you for your support. i think i just really needed to hear someone tell me everything will be ok.. my family is not very supportive and will totaly freak when we tell them we are having another child..so my whole support system is here and at our church...so to add to my concern i no longer have ant insurance and have a history of pre rupture and premee babys 3 of our 4 were premee...so if you all want to keep us in your prayers for an uneventful pregnancy and a full term baby i would greatly appreciate it...thanks, lucy

Lucy, congratulations on #5! I am no expert, but I have a DS son who is almost two years old who has two older brothers ages 7 and 4, and a younger brother age 6 months. I was also worried about having a child younger than David, but now that Dustin is here, nothing could seem more natural. It is a normal thing for children to experience siblings, and all that goes with them. I think David really kind of likes to have someone smaller than him to pick on (just kidding....but there is a note of truth to it!) All kinds of kids make up a family, and they are all blessings. Good luck to you and your family.

Dear Lucy:My chumby fingers hit the wrong keys on the first try!! Anyways, when Kaitlyn was born 4 years ago, Michael who is our second child with DS was 4 years old and was wonderful with his new baby sister! He use to help feed her her bottle, get the diapers and wipes for me. He was very gentle with her and loved to pieces. Now that she and he are both older they are typical siblings, getting into each other's "stuff", teasing and a typical love hate relationship!! We also have an older son Chris, now 12, who was very a great model for Michael when Kaitlyn was an infant. I have many friends who have had children after the birth of their child with DS and none have had any difficulties. Everything will be fine.

well i need some advise.. amanda as most of you already know is our fourth child and she has downs,, well we just found out we will be getting # 5...what i need to know is how do downs children react to having a younger sibling..they will be almost exactly 3 years apart...well any thing anyone wants to tell me ill be happy to hear...

Michelle, I just love all the changes you have made to your web page. Once again thanks for giving us a place where we can come and share with other parents. I just got through reading all the new stories and going through all the pictures in the Photo Album. Man are they great. I want to thank all of the parents for sharing their beautiful warm stories and also for sharing their beautiful pictures of their children. I don't think I have ever seen more beautiful children anywhere. I was not able to bring up Arnold's picture "coming home" but that's ok, because if it's ok with you I would love to send you Arnold's first school picture. I am very proud of it.

Hi Michelle, I got an e-mail from the greatest guy Chris after I posted my message. He has a brother with DS age 7 I think he said. He seems to like both systems but said the Playstation controls are a little easier and the games a little cheaper. I also heard from several others that Playstation games have better graphics. Chris also thought that Drew would enjoy the driving attachment. Soooo, last night I braved the customer service return desk to return the Nin64 and 3 games. In return I got the Playstation, 4 games and the driving attachment for only $10.00 more so it is a little cheaper. The other thing I noticed is the updated games of course are more. For instance, I got Drew Madden 98 instead of Madden 99. It was $20.00 cheaper. Also Crash Bandicoot is supposed to be popular and I got #2 instead of #3 and saved $20.00. Drew won't care about that part of it anyway. By the way Michelle, I have never talked to you before but love this website. So many wonderful resources made available and emotional support when people really need it and...instant friends! Well, take card and thanks so much for the help. Dru, I hope Taylor likes the Playstation. Mary

Michelle and Mary! Thanks! I've been debating for months. Playstation it is!

Mary, I don't think your post is too trivial at all! This site is just a place to share experience and suggestions. Recreation is important too! My son is nearly 9. I struggled with the decision each time, about whether or not to buy a sega system, and then upgrade to N64... almost like it was a moral decision! I am very happy I decided to let my son have video games... he has never become obsessed with them... he'll set it aside any ol' time, at the opportunity to take a walk, play some catch, or shoot some hoops. And I am so glad I let him have a video game system.. it has become something he has in common with so many kids his age in the neighborhood. They come over and think it's "cool" that Casey can hold his own with them; and often beat them. It's great for his self esteem to hear them exclaim "Wow, Casey is good!" He looks proud.Oh, so anyway, about Playstation (finally getting around to your post here)... I have no experience really about how difficult it is.. but I have been disappointed with the quality and quantity of games available for N64. They started out last year with such great quality 3D games and then sort of "dropped the ball" if you ask me. My kids are constantly asking me to rent a neat game... I find myself saying "Oh, sorry honey, that's a playstation game. You can't play that on Nintendo 64." I sort of resent that they hooked so many in, and then got lazy about producing quality games. I would really like to hear what you find out about Playstation, if you hear anymore...

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