hi Michelle,I just received my tee shirt today. Thank you very much they are really neat. Can't wait to wear it tomorrow. Maybe we can get more people from Texas on the web page. I told Joy (Arnold's ex-education specialist) about your web page and since she is always in contact with parents who have children with DS I thought she would be a perfectsource of getting the word out. Once again Thanks for everything.

BUDDY WALK BUDDY WALK BUDDY WALKSATURDAY OCTOBER 10, 1998"CELEBRATING FRIENDS"ENTRANCE TO THE SAN DIEGO ZOOWAR MEMORIAL BUILDING7:30 A.M.BREAKFAST MUSIC FUNGREAT PEOPLE GREAT CONVERSATIONDOWN SYNDROME ASSOCIATION OF SAN DIEGO

Hello,Sara, our first child has been diagnosed as DS. We would like to make more friends who understand the stages we are and will be going through.Sara is 2 months old, and YES! she is beautiful!!Please mail. Thanks!!

Hi Drowsy,My friend's daughter went through the leukemia with her daughter and she is CURED now! Both our kids have DS and both have been through heart surgery. Good luck to you!

Howdy, I have 3 children. My first son, Dakota has Down syndrome. I am a volunteer board member of the Down Syndrome Association of San Diego. I am interested in talking with anyone who would like to talk (about anything[especially baseball{ GO PADRES}]).

Drowsy... Man, it sounds like you are getting more than your share of rotten luck. Please take a look at this page and tell me if you think there is a need for this, and if it could help you at all. I will keep your family in my prayers.

Thanks Michelle, No I'm not the one you were talking to. I live in Ottawa, Canada. Leukemia was something I never expected. I was told it was a possibility, but my son also had cardiac surgery at age 2, and I don't know with all the x-rays he has had since birth and his DS if this added to his chances of getting ALL. He has been in the hospital 6 weeks now, with an infected ported cath (an IV they surgically install in the chest which lasts up to 2 yrs). We just had it removed and now they think his heart valve has an infection and we might be facing another 6 weeks of IV anitibiotics. If there is anybody out there with a similiar situation pls reply back. ddddddddddddddddddddddddddddddddddd

Drowsy, I'm so sad to hear the tragic news about your son. I was just coming to this page to post a message asking if anyone knew the name a woman I met in Texas, whose 4 yr. old son named Bradley was facing the same situation. I'm just stunned by this news. Was it you I met in Dallas? I wanted to post a message to this board, so that I could set up a fundraising effort to help Bradley's family with costs involved in the hospital stays away from home: meals, lodging, etc.. but I didn't get the last name of the woman I met. Please tell me how I can help. I'm so sorry you are facing this, it is something I've feared for years.

Hi, I've been on this chat site before. I have a 5 yr old DS son, who was just diagnosed with leukeumia (ALL). I'm wondering if anyone out there has had the same thing happen and could share experiences. Thanks

Hi Tony, I also would like to congratulate you on the birth of your new baby. I can see that you have already welcomed her into your heart. She will bring so much laughter and joy into your lives, someday you won't believe you ever cried a tear for her. I know things must seem very serious right now, but I think if you look around this site at the pictures and stories, you will see that the future is bright. Regarding making webpages: you can take a look at my "neat stuff" page for tools I found useful when building this site. You are ambitious! With a new baby and all! Well, I'm glad you found this site. I hope we can help you with your concerns.

Tony and Family: Congratulations TO Treasure: Welcome to the world sweetheart. I'm sure that you have lived up to your namesake and have given everyone around you a great treasure. HAPPY BELATED BIRTH-DAY from my family to you:)

Hi there. Just testing the optional email link. Looks like people wanted this.

Sorry, i forgot to enter my email address: hayman@zianet.com. looking forward to meeting new friends on uno mas!

Just wanted to say hi to everyone on this board. I am new to this uno mas. I just returned from the Dallas,Tx National Down Syndrome Congress convention. boy, what an informative and exciting weekend. Did anyone else out there get to go. It's is something you don't want to miss going to. They have alot of information to give us parents and professionals. I have 4 children, 2 have d/s, one is my bio daughter and the other is my adopted son. Hope to talk to all of you sometime. deb

I am the mom of a beautiful five year old boy with Down syndrome. He is our fourth child and the joy of our lives. He is bright, funny, cute, stubborn and a born actor. The internet is new to me and I would love to correspond pprivately with another family who has a child with Down syndrome. Email me at sonshoncan@aol.com. Hope to hear from some new friends.

I am trying to start a web page for down syndrome with chat rooms and ect. I would like some suggestions.

I am the new father of Treasure who was born on 7-30-98 who was born with Down Syndrome. I also have a 19 month old and her name is Trinity she does not have Down Syndrome. I would just like to leave my email address for those who may have some information or words of encouragement for my wife and I. You may reach me at tlehman@zport.com

I would just like to let everyone know that we have just had a baby girl that was born 7-30-98 her name is Treasure. As you can imagine I have a million questions. I would like to know more about Vitamins that may assist our child.

Dennis, by the way, if you are interested in a source of internet information on the subject of targeted nutritonal intervention, you can go to this site: http://www.tri21.org/kayasun THis site has many links which will share so much information with you! I hope you find this useful!

Dennis,My daughter will be 2 this month, and has been on the TNI protocol since she was 7 weeks old! We have seen nothing but positive results from the supplements! If you would like to e-mail me privately, I would love to share with you. In the meantime, you can check out a testimonial that I wrote about our experience by checking out the following link. Hope to hear from you soon. You can reach me at iwanttotalk@hotmail.comHere is the link: http://members.aol.com/TheRagans/melina.htmHave a great day!

Hello. We have a daughter with Down Syndrome who will be two. I am looking into the nutritional intervention programs and would like to know what any of you experience has been with it. My wife does not like the idea, but I want to have an open mind.

I'm not sure if this belongs here but I thought it was weird and it sent chills all over my body. This morning I was cleaning out my closet and found this box and as I started going through it I found this black ring box. When I opened it I found an old Mother's Ring that my husband had bought we about 17 years ago on a Mother's Day. It has three stones, both of my kids had been born in November so they were both yellow. I told the guy at the jewelry store that I didn't like the way it looked because you really couldn't see that there were two stones. It looked as though there was only one stone. Well he suggested that we put a diamond in the middle to separate the two other stones. I wasn't to thrill with it but it looked better. I promise not to make this story any longer. Four years ago I got pregnant again and Arnold was born on April. Do you know what stone represents the month of April? IT'S A DIAMOND, is that weird or is that weird.

Hi! I feel like I've been neglecting the website for the past week or so, but I'm running around trying to prepare for the National Down Syndrome Congress Convention this week...trying to make a banner, create order forms, and get the bumper sticker made. By the way, if any of you want an Uno Mas! bumper sticker, you can send me a dollar, a stamp and your address. Don't send an SAS, because it is 12" long and I dont think it would fit. I'll try to post a picture of it, but if I'm not sure I'll find the time before Wednesday. It will read "GOT UNO MAS? You've got a little something extra!" and picture of the crazy third pepper (like the one on this page). It also has the website name and url at the bottom. ... go to "contact us" for the address....Hey, it's not spamming if your it's your website is it? It's a shameless plug but what the heck!

Mary, just wrote you an email about the pix. They are so great! I am going nuts trying to get ready for our trip, but I'm determined to add them to the photo album tomorrow. For anyone reading this...you have GOT to see this cute kid. What a bright happy face! Take a look in a few days!

Michell, I was just wondering if you received the pictures of Arnold that I sent you on Saturday night. I'm not sure if I did it right.

John S., you have found the perfect chat line. Please try again and you too will find people that are out of this world. I am fairly new to this chatline and I only wish that I could have found one when I was pregnant with my son. The support I would have gotten here would have been just what I need. My son is three now and it's still great to get on and talk to so many people with such positive attitudes and these people have hands on experiences not book knowledge. Because if there is one thing that I have learned in my own experienc is that what the "experts" tell you is not always what is to come. In my experience, everything they told me did not happen their way. It was all BETTER. I'm sorry for going on and on, that seems to be a big problem of mine, but please give this chat line another chance and you too will see what I mean.

Ah, heck, I keep searching for the perfect chatroom... guess this isn't it. I suspect that some web-browsers don't work with java..anyway the print is too small and you can't read past discussions. Let's go back to the old version until I find the perfect setup. Sorry to keep experimenting with all of you!

Like info on downs chat line any info would be helpful.thank you.

Please tell me where i can find more info on chat lines for downs syndrome?

Michelle and Scott, I read your comments to Danny first thing this morning and I must tell you, it brought me this warm feeling. It makes me feel real good to know that there are people like yourselves out there who are willing to share your experiences with others and I know that helps more than you will ever know. Even though I had great support from my family and friends, it was still hard to believe them when they would tell me that everyting would be fine. You see they didn't have children with DS and in the back of my mind I kept thinking "How do they know." I guess what I am trying to say is that there is nothing like talking to someone who has really been there. One more thing and I promise I will stop talking. When I was pregnant with Arnold my sister sent me a book for Christmas and I was just wondering if anyone else out there has read it. It really help me through those difficult days. I also read it to Arnold when he was in ICU. The name of the book is "THE CRIPPLED LAMB" by Max Lucado it's an excellent book.

Danny I read your comments and would like to offer my experience to you. I hope it will help your friend. I am not the kind of person who gets light headed and emotional, but the day my son Casey was born and the doctors said "We believe your son has Down Syndrome", I got extremely light headed and had to be physically helped to a chair and given a glass of water. The doctors advised me that I not tell my wife until the anesthesia from her operation wore off. For the rest of the day I pretended to have a normal healthy child. In reality I had a child with Down Syndrome who was having a hard time breathing on his own and oxygenating his blood. By the time I was able to talk to my wife and tell her the truth about our son, he was being readied for a trip to Childrens Hospital in San Diego to be admitted to intensive care. As would be expected, my wife was distraught and I was having a tough time finding the right words and actions to comfort her. When i finally left the hospital to get some much needed rest after 36 long hours at the hospital I was alone with my thoughts. How could this have happened to me? What would the future be like for my son? How would we ever find the strength to cope? When I awoke the next morning it was December 25th, 1989. I was alone and feeling sorry for myself, and I had a wife in one hospital and my newborn son in another. Not exactly my idea of a perfect christmas morning. What I did not know at the time was that I had just been given the most special gift I would ever receive. When I arrived at Childrens Hospital I could not believe the festive atmosphere that I saw. There were parents and families with presents, decorations everywhere and Santa Claus making his rounds to see every boy and girl. I found my way to the neo naal unit and was allowed to spend about 2 hours with Casey. While I ws there Santa came by to give Casey his first christmas/birthday present, a small stuffed reindeer which we still have and will always cherish. Those 2 hours will always be the most special 2 hours ever spent with my son. As I sat there with Casey I suddenly realized that I was surrounded by people just like me, many of which had children who were terminally ill. Suddenly I felt like a very lucky man. I realized that God had chosen me to have a son like Casey because I could be a good father to him and give the love and attention that he would need. Casey continues to be the joy of my life. Given the choice i would not have changed things. I am the kind of person who tries to find the good in a bad situation and Casey has provided plenty. Your friend will learn to find joy in all the accomplishments that his child makes just as he would if he had a child without a disability. Having a child without a disability is not a guarantee that hardship and frustration will not occur. Learn to find joy in life's little accomplishments. Give him love and give him a chance to succeed and he will. His child will be an individual just like his father and will reward him with an incredible undenying love. In my book, your friend is a very lucky man!! Enough of my rambling for now and I hope this has been some comfort. Please answer back when you get a chance if i can be of any help. Good night.

I have to agree with you Michelle. I too find myself not giving Arnold all the credit he deserves. He also is so much more aware and intellegent than I ever thought possible. I guess that's part of the "brain washing" we have put through in the past years. As soon as a commerical for Sonic or Wendy's comes on T.V. and Arnold hears the jingles he starts saying "Fench Fies." Now I want to know where I can go to submit my name for mother of the year. He won't say "Mom" but he will say "french fries." He loves his french fries!!

WELL WHEN MY SON ABOUT SIX MONTHS OLD HE DECIDED HE WANTED TO THROW A TANTRUM AND WHEN HE WOULD HE WOULD TRY TO PULL PEOPLES HAIR. BUT, THIS ONE TIME HE WAS ON THE FLOOR AND HE PUT HIS HANDS BEHIND HIS HEAD AND PULLED HIS OWN HAIR. OF COURSE HE STARTED CRYING BUT HE FIGURED THAT IT DID HURT. TO ME THAT WAS A VERY FUNNY, AND I HAVE ALOT MORE MEMORIES OF FUNNY THINGS BUT THERE JUST WOULD NOT BE ENOUGH ROOM FOR EVERYTHING THAT I HAVE TO TYPE DOWN. I HOPE EVERYONE THAT READ THIS ENJOYS IT AND HOPE YOU AND YOUR KIDS ARE BLESSED JUST AS MUCH AS I AM WITH MY SON. BY THE WAY HIS NAME IS STEVEN ANTHONY RODRIGUEZ, JR.

Hey, I'm not sure if this belongs on the funny stories page, but it cracked me up and I thought I'd post it here. Yesterday, when I asked Casey what he wanted for breakfast he said "Lucky Charms." Well, I happened to have a box of the real name brand stuff and a bag of the less expensive stuff that I was trying to slip by the kids. When I reached for the cheapy stuff, Casey stopped me, and insisted "No, no Mom. Not that one ... This one!" He wanted the REAL Lucky Charms. It made me laugh, and it also make me realize that I thought he wouldn't be aware of the difference. If it had been my other son, I might have tried to be a little sneakier. I guess the reason, I'm telling this story is because when Casey was first born, I had a concept in my mind of "mental retardation" that is so WAY OFF from the reality! He is so much more aware and intelligent than I ever thought possible. Well, how's Lucky Charms for targeted nutrition? Mother of the year, I'm not!

I am writing a research paper derived from family experinaces with mental retardations. Is there any one online who would like to answer some questions?????

Thanks again about the time hook ups in the old chatroom version. I took a quick peak at the new version and it was like the ones I'm familiar with .Like the lay out of the new room .Try to catch you later. BYE

thank you kate i will definitely do some more research into this..and yes you are right we have to advocate for all of our children weather they are special needs or not.. it is the only way they are going to grow up to be the best they can....amanda is one of our four children so i am being well trained in standing up for all of them.....thanks again and ill keep you informed on what i find

Ilene and Lucy, Hi ! Ilene, I'm not militant either. The law does call for a continuum of educational services and by supporting IDEA ( Individuals With Disabilities Education Act ) We ideally support that continuum so that each individual child can be placed in the least restrictive environment ( LRE ) for them as individuals. My child has been fully included in a regular ed. classroom since pre-school. For now this continues to be the best placement for him. The information I was refering too came to me via our newsletter here in Cincinnati, Ohio. It was an article by Stephanie Smith Lee who is the NAtional Down Syndrome Association Governmental Affairs Representative " IDEA- A Cause For Alarm" I'm sure you could get a copy via the NDSS. It's too long to copy here. Lucy, nice to see someone with a young child interested in the future. If you are interested in learning about the laws that will affect your childs education I would recommend you contact the National Down Syndrome Society or the National Down Syndrome Congress. They can be found easily on the net. Or if you have a group in your own area join. Also there may be regional special education resource centers in your state that can help you learn. Dependent upon where you live and what your school district is like you could have a tremendous educational experience with your child or a very tough time. But this is true with any child , yes? Let me know what you find.

HeidiIf you are interested in getting your child's pix here, you can contact Michelle. She owns this site. E-mail her at somethingextra@unomas21.comYou can scan the pix and send them to her, or she can tell you how to mail them to her! Have a good day!

I just took a look at the cute pictures of all the kids! How Cute!! It got me wondering how to get MY daughter's picture put there for all to see?!?!? If you know, let my know.She's a beautiful 9 year old. Thanks!!!

ok guys what is this IDEA battle thing..amanda is only2 so i dont know alot about this school stuff for her yet.. but the last thing i want is for her to be limited simply because of who she is...please give me some more info on this.......

Kate, when you say some educators are lobbying to have the law reopened, do you mean they against our kid's opportunity for inclusion? I believe we have the best of all possible worlds right now. When appropriate, I think we have the chance to choose full inclusion. I like that. But I am not militant on the issue of inclusion. If my child has a better opportunity to learn and thrive in a special ed class, than I am going to choose that for my child. My child is an individual person, not a cause. I try to make all my decisions based on that premise. It makes me very sad to think that someone would want to take that choice away from me and designate my child to any pre-ordained path for children with disabilities.

GREAT Board and chat room. See you tomorrow

Hey Michelle you may not know me YET but I hope to catch you sometime soon.I've relayed the http: to several of my regular Bulletin Boards so be watching for some new people soon.There is alot of request for a location like this. What's that saying "Build it and they will come...." Rhonda :)

Ilene, nice to see someone else out there who is "mellowing" although I will admit that my stressors are now mostly evident during the school year. Most of the postings on this board seem to be about nutritional supplements and their efficacy. I'm currently more interested in the inclusion effort and the ongoing IDEA battle. It seems ther are groups of educators who are lobbying very strongly to have the law reopened. Let me know what you think.

KimBesides calling International Nutrition regarding information about Nutrivene-D, you can also go to the following site, which is a TNI resource site. It lists many different places where you can learn great info about TNI (Targeted Nutritional Intervention) protocol with Nutrivene-D.http://www.tri21.org/kayasun I have been using it with my daughter for 20 months. She is extrememly healthy, and is doing great. My main concern was that it would help her to be healthier by giving her body what it nutritionally lacks, and it has done just that. One ear infection, and only a couple of little colds. She has managed to stay healthy when everyone else in the family has been sick. This protocol, along with early intervention & lots of love, has made all the difference!!

Hi Kim i have the number for you to call for the nutrivene d therapy.. here it is International Nutrition Inc, PO box 43422 baltimore MD 21236 The phone # is 1 800 899 3413... they can also send you all the research that has been done so far on this product...i have amanda on it and i think its verry worth the money... the cost of nutrivene with out peracatam $75 wich also includes the enzyme capsuls and the night time capsels..

I have heard the stereotype so many times about how "sweet and compliant" individuals with Down syndrome are. This has certainly not been my experience. I have a young adult son who has Down syndrome and has significant behavior problems. I would like to "talk" with other parents who have a son or daughter with behavior problems to find out how they have best supported their child.

Michelle, I'm sorry I missed you. My husband was recently diagnosed diabetic, so now I have a whole new thing to deal with. Good thing for me that Pauline is so low maintenance. Daddy has more doctor appointments right now than she ever did! I'll keep trying. My schedule is a little strange right now.Thought finding Nutrivene-D for Pauline was going to be easy. Any suggestions?

Darn it, I just read your message tonight around 10:30 pacific time. Looks like I missed you in the chat room. But I have to say, Kim, you must be onto something. It sure seems like a lot of people have an interest in chatting real-time. Thanks for the suggestion! I'm on a mission now, to find just the right set-up to make it work for all of us. By the way, is any one else going to the NDSC conference in Dallas next month? I'm going to have an Uno Mas table in the exhibition area. It would be neat to meet some of my online pals in person!

Michelle, got your message. A huge Thank You for revamping things so quickly. I've been pulling doubles at work the last two days so this is the first I've checked. If you get this message at a decent time, let's try for Thursday the 9th at 4pm Az. time. Should be back from all our appointments by then. Pauline has pre-school in the morning and my folks head for Alaska on Friday. Hope all is well with you.

hi maggie, my daughter amanda takes nutrivene d and she also has a great imune system.remarkable since she also had open heart surgery at 8 mo. i agree with the oter post though. it is a combination of the programs available lots of love and attention and a little help from the oral therapys...

Kate, you sound very wise. I think you are absolutely right when you wrote "It has been my experience that the less you push the farther you get and the saner everyone in the household is." I agree, the more of an issue you make out of it, the bigger problem it becomes. Some people take a little longer than others.

Hi --I was wondering if there is anybody out there that has a mosiac down syndrome chuild? I'm a paarent of a 4yrboy that we found out at age2 that he has mosiac down syndrome--he can do alot but it takes a long time.He still isn't talking much--uses some sign but we put in ear tubes in at age 2 and just last yr he had open heart surgery which made a vast improvement in a lot of areas.

Hi gang! Just found this site and it's neat! My compliments to the webmaster.For those of you who have posted looking for information about the vitamins and/or piracetam as a therapy for DS, you can start your search at website http://members.aol.com/TheRagans.Some folks have also compiled a book (350 pages) called a Circle of Friends, Bringin Hope and Love to those with DS thorough Targeted Nutritional Intervention. Perhaps that was the Circle of Friends inquired about here...?My little guy is now 4.5 and cute as a button. He's been taking the vitamins and piracetam for 3 years. He's doin' great...BUT, the vits are not some magic bullet. We also do PT, OT, speech and NACD (a home program for development). The good health that he has found through the vits is just a foundation for all the other educational stuff we do with the little "Dan-man."

I'm new to these here parts! I have a three year old daughter with DS and would love to know if there are any "live" chat rooms out there for parents. If not you can E-mail us at Mondochrly@AOL.com. My daughters name is Pauline and my third child. Any response is welcome. We're from Tucson.

I was just wondering if anyone out there has given their children Nutrivene-D or Piracetam. I would like so more information about these drugs.

Just wanted to say to everyone who submitted photos, stories, and doctor information over the holiday weekend: Thank you so much for taking the time to send it to me... adding it to the website is VERY high priority to me, and I am so grateful to you for contributing. I haven't figured out yet how to handle vacations... I don't want to post on the internet when I will be out of town, that seems a little risky.... but your additions to this website are very precious material to other parents, and I want you to know how much I appreciate your taking the time to share your experience with them. Your pictures, comments and stories will be incorporated by Monday! Thanks for your patience..

I feel for you all enduring the potty training nightmare; however just as children who are typically developing, our children who have Down Syndrome learn too. Just think of all the bathrooms you won't have to visit every trip to the mall! and long car rides during which you don't have to stop and use the potty every five minutes. There is an Up side to everything sometimes you just have to find it. Children, in my experience have control of three things in their early years that give them autonomy and power. Going in the potty, eating, and sleeping. It has been my experience that the less you push the farther you get and the saner everyone in the household is.

IF ANYONE IS INTERESTED IN ATTENDING THE NATIONAL DOWN SYNDROME CONGRESS CONVENTION ON AUGUST 7TH - 9TH IN DALLAS TEXAS, YOU CAN GET A REGISTRATION FORM FROM THE NDSC'S WEBSITE AT members.carol.net/ndsc/

Hi Mimi, Thank you very, very much for the information on the otherkind of testing. (BER) I don't think you realize how much Arnoldhates people touching his face. It takes 3 people to give Arnolda hair cut. Two of us (myself and my husband) to hold him down andhis barber to cut his hair. I will ask his doctor about this BER testing next time I see him. Arnold also seems to have a problemwith ear wax. I have had to use ear drops to try to remove the waxin his ears. Arnold also spent 13 day in NICU and I am wondering if maybe theydid some testing on his ears but forgot to mention to me.

Seems like a popular topic, so I thought I would put this "toilet training made semi-easy" link in:
http://www.davlin.net/users/lleshin/train.htm
Please let us know if you find the information helpful.

I forgot to answer your question about ear infections. Casey had relatively few ear infections... not nearly as many as my second son. He does have VERY tiny ear canals, and once they were completely plugged by earwax, which had to be surgically removed. His hearing loss is very mild, almost borderline as to whether he needs aids at all. Anyone at the point of purchasing hearing aids, I've got to give you some input on the subject: they are not all the same

Mary, I'm glad you mentioned where you are from. I hope someone can recommend a good audiologist in your area. Hey.. are you going to the NDSC conference in August? It's in Dallas TX. I have been trying to arrange to set up a booth at the conference...I really hope to go. I went to the conferences in Boston and Anaheim, they were a lot of fun. Oh, about the hearing test: Casey spent his first two weeks of life in NICU at Children's Hospital in San Diego because he took his first breath inside the womb and had meconium aspiration. While he was in NICU they did a bunch of tests: genetic, heart, and hearing etc. They told me when he was only a few days old, that they detected some hearing impairment. Now that I think of it, Mary, it's good you asked! I totally forgot to tell you that they can test hearing with BER (Brain Evoked Response) where they can measure the brain's reaction to sounds, even if your kid is sedated and sound asleep. Amazing, huh? This is what they did when Casey was only a few days old. And I completely forgot that they did it two other times too. Once when he was less than a year... and later when he was four or five... I got frustrated because Casey wasn't being cooperating with the standard tests. So, there is that option for you too

Nancy, Did your daughter start talking after she had the tubesput in? My son babbles all the time and at times he actuallysays some words but we can't get him to repeat them. Since hewill be starting school this fall and will be the only childthere with DS, I'm afraid that he will become frustrated withthe other children because he will not be able to communicatewith them.

Mimi, Thanks for your information. How old was Casey when hewas tested? What made you think that your son needed to betested? Did your son have alot of ear infections when he wasa little boy?

Mary, I just want to double what Nancy had to say about hearing tests. The audiologists that have tested my son, did a really good job of making the test seem like a game. You will be amazed at how resourceful they are! My son sat in a sound proof booth, with speakers in different locations. There were hidden animated figures, that would appear and come to life (like a little dancing bear, or a monkey playing drums etc.)when Casey would respond to sounds by turning toward the source of the sound... he would be rewarded by the cute dancing character coming to life. They had all kinds of games... so that he could "add a peg" or whatever, when he heard the tone. Sometimes it took a few repeat visits, if he got bored with the game, or was in a cranky mood. I think the audiologists are used to this and take it in stride. Hope this helps relieve any worries you have about it. If the first audiologist isn't patient and kind about having to make a little extra effort... I say: shop around!! They are not all great with kids, but the good ones are wonderful!

Drowsy: Question about teaching children with DS to read. I'm not there yet, my son with DS is only 14 months old, but I have a book "Teaching Reading to Children with Down Syndrome ... A Guide for Parents and Teachers" by Patricia Logan Oelwein that seems to make a lot of sense. I purchased the book at a conference where Libby Kumin spoke. The book is published by Woodbine House.

This is response to Mary wondering about the hearing tests.They will blow a little wind in his ears to see if they areplugged at all. My daughter will not allow them to do this part either. In fact she is 4 1/2 and her canals are so small they can never get a reading anyway so don't upset him with this. They will put earphones on him for the rest of it and he will be able to sit on your lap in a soundproofroom and they will sit in front outside the room so he is able to see out to her. They will have noises come through the earphones and depending on how and if he will respond tolet her know if the sounds are being heard. I've also had them do it will my daughter without the earphones just use speakers in the room. A helpful hint would be get a pair of play headphones for him to play with before the examinationso he won't feel so invaded. This is how I got my daughter to accept doctors. I bought her a toy doctor's kit. It worked great. After that doctors are allowed to examine her. But she also will not let people touch her ears. Shehas had now 3 sets of tubes and she has never had an ear infection. They decided to go with the tubes because there was quite a bit of hearing loss. She now speaks a mile a minute. I don't think there is anything she doesn't say.

hi BJ my daughter amanda had a heart cath when she was 6 months. it was really scary and i almost opted her out of it but i am glad i dident it was really helpful in locating the exact problems with her heart..we found out with the cath that not only did she have av canal defect but she also had ventricular septal defect. which in english means that the artery going into her heart was also deformed "clamped almost" any waynow with this new info they were able to fix that at the same time as the av which saved her from another open heart surgery..any way she did recuperate from the procedure very quickly..i also have some more technical information if you would like it..all was given to me by the surgeon before the procedure.....just let me know and i would be glad to share it...'

thank you la la and lisa the information on the scar cream was very helpful..i will keep everyone posted on our experience with this product.

I am a 44 year old mom with three kids. Christina who is 23, David who is 18, and little Arnold who is 3. To say the least, he wasa big,big surprise to us. But he was a very welcome gift. He is our littleangel from Heaven. My question is this. Arnold will be starting school thisfall and I think it's time I get his hearing checked. He is not talking yetand I think that this may be his problem. But you see Arnold has this thing when it comes to people touching his face. He throws a fit. I can't even touch his face. I would like to know what they do when they check their hearing. I wantthem to be able to get an accurate reading. He has been very healthy. He has only had one ear infection and that came early this year. So if there is anyone out there who can help me with some information, I will greatly appreciate it. I have greatly enjoyed reading all the comments and hope to be a regular reader.

Drowsy,Thanks for the input about No Exit. Does the exit on this page fix it? I can alter the program pretty much anyway I want to now. By the way, what exactly is a cardiac cath? It sounds scary.. like a angioplasty or something.Casey was born with two small VSDs. I almost passed out when they told me; delivering the information as if it were good news! Holes in my newborn baby's heart? It sounded terrifying!!Seven months later, I sat in the waiting room of "Pediatric Cardiology" of Children's Hospital.. filled with self pity, and disbelief...."What in the **** an I doing in Pediatric Cardiology? Why me? What am I doing here? I should be at the park with my little baby." Then I looked around the waiting room, and realized.. there are alot of kids and Moms here ... probably with a lot worse problems than I had to face. It wasn't "why me?" anymore.. other people had problems too... not only people with Down Syndrome.Do you know what I mean?

hi everyone, Michelle thanks for the info on the book, I'll look for it. I choose Drowsy because I have a 5 yr old, 4 yr old and 14m old and I can only come on the computer after 1000 pm. Bj, my son had a cardiac cath done. It's suppose to be routine and in and out day surgery. My son had complications and had to stay in 5 days. It is a very important test though, it tells the cardiologists a lot of information. They thought he needed surgery at 6 months, he has AV canal, they thought his his valve was affected too. They were amazed at how well his heart managed under stress and postponed his surgery until age 2 1/2 and he did very good with surgery, was in and out of the hospital after 10 days.

hi all i have a five month old daughter with downs and she is having a cardiac cath done is any one familiar

Oh, Drowsy (great name, by the way): I have a book called "Teaching Reading to Children with Down Syndrome" A guide for parents and teachers. written by Patricia Logan Oelwein. Have you heard of it? It looks pretty good. I've been so busy just trying to keep up with the homework from school, that I haven't really given it a thorough reading yet..

thanks for all the info on potting training. I"m glad I'm not alone on this one. It seems that all the DS girls train quite easily compared to the boys. Justin started talking at age 2, ball, mama, dada etc, I took a sign language course and that helped him. Now he is using 2 - 3 wrd phrases. He plays with his peers but doesn't communicate well with them. The school is using sign language and pictures. This is helping too. I'm still looking for info on teaching the alphabet and reading.

Actually, Michelle, although I hate to think I may be changing diapers for another year yet, it's good to know I'm not alone!

hi maruch, my daughter amanda will be two the end of august and she also wants nothing to do with sighning..she says a few words like ma ma da da and her new one is ba ba..she also says some other things but i think they are in italian cause i cant understand it..i have been playing a new game with her that seems to help..i say the begining of a word and repeat it til she tries then i finish the word when she tries the end i put the word together..she seems to enjoy the game and at the same time is trying to say some more words..i have even caught her trying them when she is playing by herself...i to agree that you should have your daughters ears ckecked,,it may be as simple as wax build up with ds their ear canals are alot of times very narrow which can cause even a little wax to block the ear...amanda is going to a specialist in the next week for this very reason ..it really surprised me because amanda has never even had an ear infection...

About the potty training: actually 5 years old was when I started grumbling about it...and starting to feel impatient to get it over with. I hope it's not discouraging to you or others, but here's the frustrating truth: He was still not daytime trained until he was almost 7, and finally out of the pull-ups at night too at 7 yrs 9 months. It is the one thing that really put my patience to the test regarding DS. My theory is that it isn't a mental thing.. it is a muscle control thing. Seems to me that the boys have much more trouble. Do you all find that to be true? Maruch: I've got to go check his baby book on the talking. It seems so long ago. I think he was saying "mama, dada, ball, and a few requests for food and juice by 1 1/2. The sign language really helped us. Also at 3 he got hearing aids, and that really improved his articulation. Have you had your daughter's hearing tested. Maybe she is saying words the way she hears them?

Hi! My little girl is 2 1/2 and is just starting to talk. She can say a few words like mommy, daddy, stop, her brother's name, a few other. What ages were your kids when they started talking. She does not like using sign language and really tries uses words - I just can't understand her.

Hi! Sounds like Drowsy and I have a lot in common! My 5 year old son also had the heart surgery, and didn't walk until he was 3 1/2. Does everything at a dead run now, though. Michelle, did you say 5 years of potty training?!? He's turning 6 and some days I'm sure he'll still be wearing diapers when he graduates from high school!

hi michelle,,ive never heard of that one but here in florida they have another program called CMS childrens medical services...amanda was on it for a while but unless you dont have insurance privately or through the ssi it is really not nessasary...that and when you use there service you have to use there doctors...i prefer to keep amanda with only one pediatrician so i droped her from their program...amanda did real well in therapy yesterday..they said she was not real far behind and rated at an 16month level..she will walk if you hold one hand now..i am so proud of her...i think it is true that any downs child can far exceed if they are not treated as though they are handicapped..well shes awake from her nap gotta go....did you read the new poem i posted on the other page???

I just met someone today that mentioned Social Security benefits for the disabled. I always thought that SSI was the only resource for that kind of thing. In Calif, there is something called CCS, (Calif Children's Sevices, I think) but they make the paperwork so overwhelming and the coverage so skimpy that I'm sure most people just give up in frustration

hi michelle, i went to a place called tlc rehab and they contacted amandas pediatrician he in turn wrote a perscription and social security says they will pay for it ...

Sun Jun 14 19:10:13 1998 PDT Lucy, how did you get Amanda approved? Or did you decide to just foot the bill yourself?

Well i did it Amanda has her first physical therapy session on monday..she is trying to walk and can get around her playpen walking with one arm holding on..i have also been playing with her alot on the floor getting her to stand herself up.she does really well at this...I have Amanda on Nutrivene-d she has been on it since she was born...note she was also a premie..although she also had the heart defect..that has been the only thing to keep her down..never had an ear infection.she also recovers very quickly from colds...note though we only have her on the vitamin program not the perasatam program i personaly dont like the idea of such a strong drug...i speng every chance i can get playing with Amanda she is truly a gift to our family..and with three other children she never gets lonely and always gets plenty of love..i cant say for sure that the vitamins make a big difference but since our whole family takes some form of vitamin suppliment it cant hurt to give her some too...my advise though if you are looking to vitamins for a miracle cure you need to look alot higher than that.. Only God can give you a miracle..and i beleve Amanda is one just the way she is..i dont want her changed i just want her to have the best i can give her even if its only my love......one more thing praise God for all of your children they are perfect in Gods eyes.....

Hi, I have a 5 yr old son who didn't walk until he was 3. He had open heart surgery at 2 1/2 and really changed him, gave him strength. Before surgery he didn't eat very well, but now he does. He used to do the army crawl and wouldn't bend his knees going from a stand to a sit. We put him in leg braces and this forced him to bend his knees. I still find his legs are weak, he is unable to peddle a tricycle but he can pedal a bigger bike. I am having trouble toilet training him. Does anyone have suggestions for toilet training. He is learning his alphabet. Does anyone have tips for teaching DS kids to read.

My wife and I had our daughter on Nutrivene D for a year or so. We don't think that it did anything, however, we felt we had to try it. We stopped giving it to Rochelle, because she simply refused to eat it anymore. If you are looking for more information on Nutrivene D, it commonly appears under TNI (targeted nutrition something). I would like to also offer my thoughts on walking. Rochelle is 23 months and just started to walk, she gets about 12 steps in before gravity overcomes her effort

I know I've seen info on the web. I'll post it if I can remember where.

Yes, it was nutrivene d. I would like to know more!

I think I remember the show you are talking about. Was it Nutrivene D?

Hi room! I have question. I was watching Dateline acouple of months ago and it was about a woman who adpoted a little girl who had DS. She had did some research on DS and found that DS children lack certain things that different vitamins that they can take could help improve balance , concentration and other things. I was wondering if anybody happened to catch that . And if so, I would like more info on it so that I could check it out.

Lucy, I live in Calif. and in most situations, just the Diagnosis of Down Syndrome was enough to let my son qualify for physical therapy and many other services. I wonder if you are getting the runaround from whoever authorizes services for your daughter It seems like the fact that she isn't walking by two years old, should be evidence enough that she could benefit from physical therapy. I really think you shouldn't take no for an answer on this. That said, I want to reassure you that 2 yrs. doesn't seem out of the ordinary to me at all, for a kid with Down Syndrome. Is she pulling herself up on furniture or trying to stand?

My 2 year old daughter has downs and i guess im not the only one concerned that she is not yet walking..reading your messages really made me feel alot better..i dont get to talk to other parents with downs children and it is really hard some times..Amanda is such a good little girl and has done so well that she is not been accepted to any physical therapy classes.. although i am thrilled that she doesent need it it makes it real hard

Hi Rhonda, I have a son with Down Syndrome who is 8 years old. I would be happy to discuss and help with whatever I can. Another avenue for good advice is the newgroups. I've been meaning to get more involved in a newsgroup or "list-serve" but I'm not very familiar with how they work. I do like talking to other parents, I think they are the best source of great tips and information you are going to find. The support group meetings never seemed to work with my schedule... that's why I think the internet is the PERFECT place for us to help eachother. Does your daughter have internet access?

Hi room, I am a grandmother of a downs baby...I'm am trying to help my daughter find a place she can go to discuss with other mothers her problems in rasing Megan.

Hi Again. I'll bet your Darrel Ray will be walking in no time. No doubt, it will happen while you are on vacation, just to keep you on your toes! I was glad to hear that Darrel Ray eventually brought out the best in your husband. At first when you said that he was against the sign language, I expected something different. I guess we all have a right to our own theories of what is best. I know a few of mine are less than politcially correst. But personally, I found the sign language to help both of my sons communicate their needs sooner. It helped Casey get his message across a little easier. Even his little brother picked up a few signs, and everyone was amazed at his speech at such a young age. In my experience, it helped them, and I saw no evidence that Casey came to rely on it in any long term way. As soon as he could pronounce the word, loud and clear, he ALWAYS dropped the sign. Just helps ease any frustration, in my opinion. Hope you both have a fun trip!

Hi Mimi Well we are going to NY and FL on vacation. Dad is staying home. He has given my all my instructions. On how to care for my baby. He never wanted children . ESPECIALLY a "disabled" child. But he is such a hands on dad. He tried to talk me into getting the test to see is I was carrying a baby with DS but I refused. I just said if God chose a DS baby for me it was his will. Anyway I can't imagine life without our special gift and neither can his dad. Everyone in the family loves this guy!! Oh! One more thing. I do hold Darell Rays knees in a crawling position and simulate the crawling motion. He does betten on the lawn . But tires very quickly.

Hi again Tilly, I''ll check his baby book on this, but I'm pretty sure Casey didn't start crawling until he was 19 months old. A friend suggested we actually take his little legs and guide them through the crawling action, and sing-song "one - two - one two.!" as we did so. It worked! Who knows? Maybe he was about to crawl without the little lesson, but it seemed to help teach him the movements required to crawl. I wish I could insert a little video clip of the moment he figured it out... Oops, gotta get the kids to school, I could go on and on about that kid, but I'd better go...

Darell Ray is my son and he is 18 months. I meant to say before, that he doesn't use his legs much. He has phsyical therapy 2 times a week. I exercise him everyday. He seems to enjoy the exercise more on the lawn now that it's warm. When we go to the hotsprings in Thermoplis Wyoming he just loves it now. I think he will learn how to swim before he walks. My husband is really against using sign language. He is in denial about the special needs Darell Ray has. But is verry prompt about giving him his Nutrevine-D on time. So what do any of you think? Thank you for your feedback Michelle. I too have faith in God. He has been so good to me to bless me with this baby at age 45.

Hi Tilly. How old is Darrell? Casey was nearly two when he started walking. My husband used to call him "peg-leg" because he used to do this half-crawl /half starting to get up on his feet thing for many months. Whenever I start to obsesses about the "time-line" of his progress, I try to remind myself that a year or two is not really going to affect the quality of his life in the long run. When I started to worry about the fact that he was nearly two and not walking yet. I would stop and reassure myself "ok, do I really think he is going to still be crawling by the time he gets to kindergarten?" I knew his time would come, and we would celebrate his accomplishment when it did happen. This is one reason I feel that the accomplishments of people with Down Syndrome need to be celebrated and recognized. These things come so easily to all of us... but people with DS can get there too, they just have to work harder to get there! To their credit, THEY DO GET THERE! Sorry, I don't mean to lecture on the subject. God knows I've had my moments (especially with potty training) that tested my patience. I remember thinking "Man! Five years of potty training? I didn't sign up for this!" and feel resentful. But it suddenly was over, something clicked and the challenge was over! Maybe that is what I want to say to you... it's a little different with DS. It seems like you go a long time with no progress and then BAM! It clicks, and they make huge strides overnight. I need to go back and check the videos, but I'm sure it happened very suddenly as I remember. Here is one thing that I do think is a blessing: I think the fact that Casey looks so much younger than he really is, is truly a blessing. It cuts him a little slack when it comes to strangers expectations. You know, I'll bet my parents wished I graduated from college when I was 23, like everyone else. But now that I'm 37, does it really matter to anyone that it took me an extra two years? I don't think it makes any difference in the "Grand Scheme of Things."

Hi Everyone I'm concerned about my son Darell Ray . He has Down Syndrome . He is still only doing the army crawl. He says ma ma DA DA but isn't using his much. Has anyone has a child walk this late or crawl not using feet at all.