I too watched the program on Discovery Channel and was in total shock after seeing the child after his surgery..i would NEVER put my child through this kind of torture! I think the parents have extremely too much pride! Everybody is different ..Children with DS are so beautiful.Of the world could see through their eyes we would all live in a better place..

Our family watched the Discovery Program, horrified like a lot of you.This child recieved more stigma from Mom and Dad than he ever will out in public.Our children with DS need to have total acceptance and unconditional love at home, because they won't get it anyplace else.We all have kids with faces not only a mother could love but the rest of the world as well if they will just open their eyes.

The whole "Skin Deep Deal" just makes me ill! I did not see it and I do not want to see it. I can not even imagine doing it to myself (and goodness knows I could use a little here and there) never mind a young child. That's all.

Hello! First, I would like to commend all who created this page. I think it is a wonderful site!! Please, keep up the good work! Second, I echo Michelle's comments on the program "Skin Deep". In addition, may I say how shocked I was that the Discovery program would choose to air a program on such material, considering how few parents/people are even thinking of utilizing such drastic medical options. A piece on the wonderful things people with Down syndrome are doing and accomplishing these days would have been much more helpful and enlightning, to all of us and the general public. Well, just had to get this off "MY CHEST".

I'm another new person to this site. I left a message on the bulletin board in January. Since there were no responses, thought I would try this instead. My daughter, Mirissa, is 11. She has not been walking properly for some time and had started falling a lot. After much frustration in getting a medical person to address this issue, I recently got to an orthopedist who actually took X-rays and found that her left knee is dislocated. He says this is a frequent problem in DS people due to the muscle set around joints not working properly causing the joint to go out of place over time. He gave me three solutions: 1 - don't do anything; 2 - get her a brace; 3 - do an operation to correct the muscles and put the joint back in place. Since my husband died last year and Mirissa is therefore afraid of hospitals, I ruled out the operation for now. We are still waiting for the brace. Interestingly, she hasn't fallen since we went for the brace mold fitting. Does anyone else out there have any experience with this dislocation thing? Has anyone had the operation done? How successful was it? How long and difficult was the rehab?

I only found this web site yesterday but was very interested about the comments on the program "Skin Deep" which has not been shown here in Brisbane, Australia yet. I have just emailed the cable network to see if/when it will go to air. I am the mother of a beautiful 10 year old boy with Down Syndrome.

Sorry but that should have read Bulletin Board.

Michelle, I just posted something on the message board and I want you to know that after it stays on for a few days, you can delete it. You know me, it's long. I just felt like I needed to get it off my chest.

ONE MORE THING! I would like to share a suggestion made by Mary Wilt of The Parent Advocate News: Don't know if any of you saw "Skin Deep" on Discovery Channel Sunday night (a three year old child undergoing radical facial reconstruction because someone might make fun of him when he gets older). If this bothered you, I am suggesting that we send pictures of our kids with Down syndrome to this doctor with the simple note: This is NOT the "Mask of Deformity". His address is: Dr. Kenneth Slayer 7777 Forest Lane Suite #C717 Dallas, TX 75230

For those of you who missed the Discovery Channel's show 'Skin Deep', you will have another opportunity to view the program on Sunday, February 28th at 5:00 PM, Pacific time and 5:00 PM Eastern time. The Discovery Channel feels that they reported both sides of the issues. If you would like to voice your opinion of the program, you can reach them at their toll free #888-404-5969 or write to them at: Discovery Channel, P. O. Box 665, Florence, KY 41022.

I get requests for information in Spanish quite often, I assume, because of the title of this website. I don't speak Spanish but I do have some good news to report. A local group called PROUD just received a grant from the March of Dimes to expand their information base into spanish. I will try to keep you informed when any new resources in Spanish become available.

Michelle, you are NOT high strung, I cried throughout the whole show. They have given this child, Michael, a permanent complex about the way he looks now. Offensive doesn't even begin to cover what I felt about the way the doctor spoke about Down Syndrome and the way he used those parents' fear as a way to make money. My Cameron is 8 years old and has had only two surgeries in his life, one to correct a nystagmus and the other was open-heart. My husband and I would never put him through ANY unnecessary process that would in any way cause him pain or discomfort. Later, should he decide to have this surgery on his own, then that is his decision and we will support it, but as far as we are concerned he is one of the 3 most beautiful children in the world (we have two younger boys as well, and he is perfect as he is, stubborn streak and all.

I really feel that these parents were more preoccupied with looks and public appearances than anything else. I think that they really thought that Michael's life would somehow be drastically different if he looked like his brothers. Like I said, I have three boys and they all have a very different look as well as very different personalities. I love them all the same, no matter what. I think this couple was very confused and the surgeon took advantage of that fact as best he could.

I'd love to continue my monologue.. but I'd better make a few other announcements: Here is today's daytime chat archive. Also.. Visitor from OK that placed an order this weekend.. I've been trying to send you an order confirmation but I keep getting my email back as undeliverable.. I will put your confirmation in the regular mail. (If you email me, I will have your exact address to respond to.. over the secure server, I can't access it).
Finally, I will be trying to study the access reports for the chatroom this week, to try to narrow in on the most popular times that people want to chat. Each time you log in this week, will help me know what times are most popular. I will continue to tweak the chat schedule to try to accomodate the most people.

I thought maybe I was a little high strung and might be over reacting to the show last night. But I still feel the same way today: I found the attitude of the show "Skin Deep." offensive. I felt that the parents acted out of fear of the unknown. When I saw the before and after (and during!) pictures of that little boy.. my main thought was "They never gave him a chance. They just imagined the worst, and panicked. They never gave him a chance to grow into his own look." I think they got lousy advice from some doctor to "do it as early as possible." I disagree.

I felt so sad at the very beginning of the show when the father is berating his son's previous "chubby face." Insane! Should everyone with an infant drag their kid in for liposuction to get rid of their baby fat?! Both of my kids had their chubby cheeked, baby fat stage.. they both grew out of it naturally .. without having it "removed." Honestly, I feel sorry for these parents. I think they were driven by a fear of the unknown. I wish they had given their kid a chance to grow into his own beauty, before they decided he wasn't good enough.

Ok now, maybe this is extreme: but I was even offended by the show labeling Down Syndrome as "incurable." It is a person's genetic makeup. I am genetically a woman... socially, that means I will face certain stereotyping, discrimination, and disadvantages that men won't. Does that make my condition "incurable?" It's who I am!.. ok, I'm getting carried away. I just don't think of anything about Casey as "incurable." He is a great, handsome, wonderful person... I don't want to cure him from being exactly what he is. I want to help him reach his full potential. I don't think altering a baby's face at 3 years old is the way to do that.

I am a high school student trying to write a report on Down Syndrom. I would greatly appreciate it if someone could sned me some information on Down Syndrom or good links. Thank you sooo much!

I did not make it to the chatroom last night but was so unnerved by the show "Skin Deep" on the learning channel.My son Drew was in the room when it was on and was playing a game. After the surgery was done and the little boy was visiting the dr. for a check-up Drew looked up at the TV and said. "that little boy looks just like me" My husband and I were both speechless. I felt so sorry for that little guy having such a drastic procedure and I did feel like the father was really needing some validation for having it done in the first place. I wonder if they ever talked to any parents of older DS children who had not had the surgery done? I also felt like the surgery did not make that big of a change in his appearance and wonder what will happen as he ages. I have to say, at times with Drew he may display some actions that draw attention to the fact that he has a mental handicap. He works in our family business and sometimes when he helps customers, I as a mother am glad that they notice that he has DS. I think this makes most people more understanding. I guess what I am trying to say is that we unconditionally love our children and sometimes we have less control over their development as they get older. What are the parents going to do when these sort of things crop up? Surgery doesn't fix everything. The mother in the program talked about people making fun and calling bad names. Next week I am taking part in a program at our Middle School. Parents with children with all different disabilities are placed in different rooms throughout the school and given 25 min to openly discuss their childs handicap. The kids are given opportunities to ask questions and make comments. This goes on all morning as the different classes rotate around through each room. This is where it needs to start or even earlier. Hopefully kids given information at an early age will develop into more non-judgemental, caring, compassionate people. Some will, some won't! We can't control that either. There will always be ignorant people in this world. "Yes', we told Drew, "he does look like you...and isn't he handsome?" In my opinion, "Don't fix it if it ain't broke" Our kids are perfect the way they are....ALL BEAUTIFUL!!!

I've got to rush to work.. but here is last night's chat. Click here to view it. Heather, I taped the show last night. Do you know of an inexpensive way that I can send it to you?

Hello, I'm in Switzerland and couldn't watch the Discovery Channel's show on DS tonight. Could anyone tell me if it was worth watching, and if it was, is there a way I could get a copy from someone who taped it? Thank You!!!!!!!!!!!!

The scheduled chat was a great success, even for a Sunday night. I will make the chat dialog available for anyone intersted, to review. I try very hard to remain neutral on most controversial topics... I don't want this site to have any sort of "bent" at all, other than a positive optomistic one. I want people to feel free to speak their mind. But I'll need to hold my comments on the Discovery Channel Show until I can collect my emotions. I'm not sure I can keep my opinions to myself this time. I'd better go, before I start expanding on the subject!

Let's set up a few chat dates and see how it goes.
This week I'll try SUN and WED EVE at 6pm PST(9 pm EST).  And Weekdays at Noon PST.
I hope this helps people connect in the chatroom more often. But you can also catch folks in there anytime of the day or night! I am trying to arrange a guest for the chatroom, hopefully a doctor that can answer our questions for an hour or so sometime. I'll keep you posted. Check the calendar for scheduled chat announcements. Hope to see you all tonight at 6pm PST!

Melissa, Please read approx 5 messages down on this topic. I rotate the stories on the "Your Stories" and "Funny Stories" pages. When the files get too full, people can't open them on their web browsers and I need to archive them. I rotate the stories to an archived page when the current page gets too long. Your story can be found here.

i know that i have put my story of my son jason where did it go? or do they just get moved along or does that page just get updated with new stories? if anyone knows or would just like a pen pal email me thank you. please visit the photo album and look up jason you can see my 2 cuties there. jason is much older now.. he is 1 yr old on friday my my how the time has flown bye..

Candace I tried to reply to you privately regarding your post, however the e-mail was returned. Please contact me, and I will send you the e-mail.

I'm so thrilled to find info on down syndrome. I have a 10 month old daughter and couldn't love her anymore than i already do, she is definately a gift from GOD!

I would just like to comment on this site. I think it is just so great!!!! I am a 16 year old High school student and I have a 15 year old brother who has down syndrome. I am hoping to work with down syndrome children the rest of my life. I was hoping to find part time work after school working with children with disablilities. Everywhere I have looked is associated with the government and you have to be 18 to work. If anyone has any information about any kind of job dealing with children with disabilities please e-mail me. Again, I would just like to comment on how great this site is!!!!!!!!!!!!11

Hi, I am so excited, I received two emails thanks. I will be replying to both in the next day or so. I only have a short time on the internet right now,. thanks again and have a great day.

Lori, When a file (or webpage) gets very long it loads very slow and sometimes crashes a visitor's browser. I start getting email from people saying they can't view the page. For this reason I need to periodically move posts to an archived page. On this message board, Funny Stories and the Your Story pages you will find a link at the bottom of the page called "MORE!" I think there are three or four pages of "YOUR STORIES." I haven't had a chance to look; did his story disappear from the archived pages as well?

Does anyone know what happened to Blake's story on the story page?

Im new .. And i want to join the group

Sandy, I tried to respond to your message re: needing input for your dissertation but there was my email was returned as undeliverable. Please repost your email address, was it input wrong? I'd be glad to complete your questionaire.

Hi I'm new to the site, I have a son Jacob with DS he is 4yrs old. I think its great to be able to get in touch with so many people and share stories and info. about downs

Our daughter, Gabrielle is five years old and has broken a tooth. She needs a crown. As you can imagine, there's no way to do this without "IV" sedation. We're looking for a DENTIST and an ANESTHESIOLOGIST that will allow us to remain in the room while the procedure takes place. I'm a nurse and can handle this without a problem. Besides, I want to SEE what is going on for my daughter's protection. I can't bring myself to just "hand" my child over to someone and hope that all will be well. If you know of a dentist that we might contact, please let me know. We can travel almost anywhere necessary.

Hello! I am a third year psychology student at the University of East London. I am currently working on my dissertation which involves a short questionnaire to the parents of special needs children. The questionnaire focuses on parents' reactions and emotions experienced within their family, looking at both the positive and negative aspects. I kindly ask any parents of special needs children aged over 8 years or above and willing to fill out this questionnaire to E-mail me as quickly as possible. My deadline for handing in the project is rapidly approaching and I have found it very difficult to find enough parents to give me an unbiased view - this is the reason why I have resorted to the internet! Great web-page and very useful to anyone interested and involved in special needs. Sandy!

Hi, Im 45 my sister Diane is 36 and has ds. Our parents are deaeased and she lived with my family for a while but this caused alot of turmoil. She now lives in a group home and loves it. No violence, tantrums, verble abuse or anything. I guess she just needed a life of her own away from family. My mother was very over protective, and she did little outside the family especially as they aged. so anyone out there in a similar situation there is hope and there is always room for them to grow and experience possitive things in life, the key is to find good people to care for your loved one.

Hi! I have two children with DS Tyler 15 and Lindsey 12 yrs. old. Lindsey was a tiny peanut of a kid, up until 1 yr. ago. She has gained , at least 25 lbs. in this time frame. We have had 2 sets of thyroid tests done. Both results were within normal range. ???? Does anyone have any other suggestions? Her diet is well monitered, and she has never consumed alot of food. This is why I am so puzzled.Her added weight has had an effect on her knees. She takes an anti-inflamatory occasionally for the pain. She takes Trazadone for a sleep disorder. Thats all the meds. she takes. Any suggestions are welcomed.

Jenn . . . Good luck on your report about Down syndrome. I would like to suggest that you refer to Down syndrome as a disorder rather than a disease. Down syndrome is not a disease in any way. People who have Down syndrome simple have an extra chromosome in each of their cells. You sound like a very caring young lady, and lucky for you that you found this site! Keep up the good spirit.

I just wanted to say that your web page is very educational and I learned alot from it. I know people who have this disease and members of my family work with people who have Down Syndrome and one day I hope to as well. Also, your site has helped me alot in my report for school. Thanks for such a good site. And to everyone out there with DS BEST of LUCK in the FUTURE and dont let anyone bother you about having the disease because I know how the people are in my school.

Hi there! Does anyone know of any organizations in the San Francisco area that offers activites for adults with Down Syndrome?

hi I am new at this just looking to see what is out there. I am from Hinton, Alberta, Canada. I have a 2 year old daughter with ds. She has 3 older sisters.

Just wanted to say one last thing and then I'll drop the Al Gore thing. I have gotten allot of positve feedback from people saying it doesn't hurt for him to be reminded and many people said they are glad I sent it. I feel much better now! Thanks everyone! Diane

diane, i got an electronic e-mail reply only stating that my e-mail was recieved..i should have checked in advance to see how current that statement was made by al gore. however i do not feel bad about my e-mail i said noting wrong. i just simply stated that he should think about what he is going to say and how it will affect others before saying it.. i am also kinda glad i did send my email and that hos comment was posted on the bulletin board.. it goes to show him and other leaders that even old statements can do damage and that he and others should consider this before speaking...in other words " be sure brain is engaged before putting mouth in gear"

Regarding software for two year olds: I can highly recommend a "cd rom storybook" called "Just Grandma and Me" by Mercer Mayer. I'm not sure I would say that it's educational software, but when my sons were only two and three years old... it absolutely drew them into the story and the interactive part of the program. They lauged and played with that program for at least a year! It definitely taught them about how the mouse worked, and the cause and effect of "clicking." It was entertaining for the adults and our little one's. That would be my very first choice for a very young child! It held their interest and was well worth the money. At that age... you don't want them to equate the computer with frustration and failure... storybooks like "grandma and me" and "The turtle and the Hare" were the perfect introductory programs because nearly anywhere they click on the screen produced results.

ANAPlease e-mail me privately if you are interested in getting some more support from other parents who are also using NuTriVene-D. There is a list-serv for parents who are using it for their children. It is a wonderful way to hook up with outhers, and get lots of great info! Let me know if you are interested!

Kristie thanks for the reply it's great to know that someone is using the same thing we are using;makes me feel less lonely,for I also found this other Dr web page whichs happens to be against Piracetam;my Dr is supporting us and suggests that we keep it up,and he is and expert here in San Antonio.The only real problem I have with Maca is her speech ;she understands both English and Spanish but her expressive languaje is very poor.She will turn 4 next month.

ANAI have also heard negative things about the Sierra Clinics. I don't know much about it, but somehow they got my e-mail address, and sent me unsolicited info. I just deleted it. I, too, give my daughter NuTriVene-D and piracetam, and she is a very healthy girl, with good muscle tone and very good speech abilities. I am extremely thankful for this protocol, and know she is better off for it!

My son is great !!! is any one thing same.ds child is not my life problems it is rich things.

We.ve been using Piracetam for 31/2 along with the Nutriviene protocol and so far I believe we are doing great but just the other day I bumped with the sierra page and requested info It has been 6 day and nada,they haven't send anything,I emailed Dixie Tafoya she just say that they are using a very dangerous solvant but did not elaborate.Any body has and input?

About this Al Gore thing...I asked about this on my listserv and got several replies.Al Gore did say those things--several years ago! He has since apologized publicly. I still, don't feel real good about sending my e-mail yesterday. I can always blame it on my slow computer.

This is for Lucy....Did you get a response when you e-mailed Al Gore?I sent one yesterday then Mary e-mailed me saying it was probably not true since her news station didn't have a record of it.Anyone know more about this?

Can anyone recommend software for two year olds? I am looking for something that he will gradually get more interested in, he is just semi interested in the computer now.

In HEALTH CARE GUIDELINES FOR INDIVIDUALS WITH DOWN SYNDROME (Reprinted from Down Syndrome Quarterly Volume1,Number2,June,1996)http://www.denison.edu/dsq/health96.html pg 6 bottom ENT

Was there a problem with the chat room on 2/5/99 into the a.m. 2/6/99??? Because there were duplicate statements plus when I sent message it would not refresh and update at end of last statement. Please inform us to what is going on with the chat room. Thank you.

Just to let you know, I sent my email to Al Gore. I'm curious to see if I get a response. I'll let everyone know.

I'm new here and would like to join the group I hope I,m on the right track

I have a little ds boy age 4, HIs name is TJ. We went to the doctor today and he referred us to a specialist, ENT Doctor for a second opinion about his tonsils. Has anyone had any trouble with their child having their tonsils out? Were they treated as outpatient or did they stay in the hospital overnight? I would just like some feedback on how other kids have handled having their tonsils out. Please let me know. Thank-you!

Does any one order PIRACETAM from"Glaxo"(ot of Mexico ) or from"Masters Marketing Com" Are they a reputable company,or should I order out of "Hazel Drugs".Any and all comments would be appreciated. Thanks Kim Perrea

Tonya- When first started brushing Max's teeth I used a little finger brush with FIRST TEETH it tastes yucky to me but Max loves it. I found it in Baby Superstore. We now use a litle toothbrush because it started getting dangerous to put our fingers in there. I tell him to show me his great big teeth, he laughs and I grab the opportunity.

John - "Step by Step: Heather's Story" is a 1996 (65 minute) video. Heather, who has DS is in a regular 4th grade classroom. The video follows Heather from age 8 in a self-contained, special education classroom to age 10, fully included in her neighborhood school. For information or to order, contact: Comforty Media Concepts 2145 Pioneer Road Evanston, IL 60201 - Telephone #847-475-0791 The film also has comments from Heather's parents, teachers, inclusion consultants and other school personnel as they explore the challenges and successes they encounter.

I need some tips and advice on how to get my 2 year to let me brush his teeth. He just clenches right up and won't even let the brush in his mouth. I've tried hand over hand with him, and this is not new. I always brushed his gums when he was younger and with a brush as soon as he got teeth. Now he won't have anything to do with it. I need some advice.Peter's mom.

I'm trying to track down a video. It's called "Step-by-Step: Heather's Story" and it's about a young girl's experiences being included in school. Can anyone help me track down the publisher?

Can any one tell me the best sites for information on Downs Syndrome?

Hey CTT,I would like some more information on the tape that you have. Where can I get a copy or where can I go to listen to it. My local newstation did seem to any record of it.

i was not able to post my email to Al Gore. i lost it in the computer. however i encourage you all to e-mail him your selves. his web address is in the next entry below.

Posted by ctt on January 31, 1999 at 22:30:10:I was upset when I heard a sound bite of the Vice President Al Gore:he was describing his opposing party members, saying that they are crazy-way out there-and then he says: I am talking about the extra-chromosome ones. I did not think that was a very good choice of words?

http://www.whitehouse.gov/WH/EOP/html/principals.html: this is the web address with al gores e-mail . the following response was sent to him by me. i encourage all of you with family and friends with ds to also send a email of dissatisfaction.we get enough battles we dont need them to be fules by the unthoughtful comments of our leaders.

Hi my name is Spencer I am D.S I am 25. My auntie made a webpage for me. It contains a story that my mum and dad wrote about me, and the way I have been treated badly by the people we most trusted ( The medical Doctors) please read it,as it may help other children in this world who are also D.S. The site addres is http://freespace.virgin.net/caroline.h/spence.htm

Would like information on Hypothyroidism and children with Down Syndrome. Has anyone used alternative therapies to treat this? If your child has been affected, did he,or she become aggressive due to the low functioning thyroid?

Hello,we have ds boy he`s name is Niklas and he is 6 years old.Niklas goes "prepare"school and he start the school 8/1998.we live in finland.we are interesting to heard your comments to the "prepare"school in yours country.sorry this writing i use little english.greetings for all.

I have a 6 year old daughter with DS. New to the board, would love to talk to anyone! I am sending my daughter to public school next year....scared to death.

I would also like to arrainge a chat with someone experiencing the same withtheir child.My wife and I are eagerly looking for correspondence.

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