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Hi again,This is just a great website. I get a lot of good information and support. I am a single parent with 2 kids and my youngest who is 5 has DS. Their dad is not in the picture since he was born. I sometimes feel overwhelmed in dealing with different issues but it is nice to know I have somewhere to turn. Thanks so much! My newest issue is potty training. Now I have seen enough information about it and have read the comments here but none have indicated the problem I am having with Davis. He has decided he no longer wants to go potty in his diaper but also he doesn't want to go on the toilet. The big toilet freaked him out from the start so I have a little one for him. Recently he doesn't scream and protest as much when I put him on but the problem is he WILL NOT go. We could sit for an hour (which I know isn't good) and perhaps after that long he can not control it any longer and goes but will SCREAM and cry the whole time. It isn't that it is hurting him - it is more a control issue. If I do not force him to sit on the potty he becomes constipated and won't go for as long as 4 days until I have to give him a suppository. Now I am giving him a laxative every other day or he just won't go. He will kneel and bounce up and down which is my indicator he has to go. HELP! Sorry about getting so detailed but I just was wondering if any of you have had to deal with this? My guess is it is just going to take time for him to know it is OK to go potty on the toilet and he will feel better if he does. But how long will this take and can I help speed this process up somehow??

Dear Dru and Mary. (Apologies.. must keep this message short or my computer disconnects me!) I cannot thank you enough for all the help you have given me. I have found the NUK distributor here in England and have 2 on order. Nobody here from my Dentist to the Special Needs nurse have ever heard of them. Have just visited the new-vis website. So much information!!! Have tried Dru's card idea for helping Marcus's behaviour problems when we go shopping...and it works!!! Thanks again.

Michelle, first of all let me tell you that I think your "Extraordinary Stories" is a great idea. What a wonderful addition to you web page. This is a perfect thing for parents to be or for parents who have just found out that their child has DS. The second thing, I too found the message "Looking for girlfriend" offensive and disturbing. My first thoughts were to email this young man and tell him that he needed professional help. For once in my life time I kept my mouth shout and I'm glad I did. The comments that he got were wonderful. Thank goodness there are cooler heads out there. I feel like we should have some form of censorship, after all, we send our kids pictures for you to put on this page and I'm always posting my last name along with my email address. I never think twice about leaving my email address on the chat line if I feel that there is someone out there who needs someone to talk to. I think we should try and keep the offensive and rude people off. Sorry if I offend some of you out there but this is just my opinion.

Just wondering what other's thoughts are on "censoring" offensive comments on this site. Occassionally, there are strange or insulting messages posted. I just noticed the "Looking for a girlfriend with DS" post on the the threaded bulletin board.. my first thought was to delete it. But there are some very thoughtful and empathetic responses to this troubled person.. and I'm reluctant to erase their comments. What do you all think? Most of all, I want new parents to come to this site and feel good about what is in store for their family and their child's future. I hope if you see something on the site that is offensive you will email me and alert me to it. It only takes a moment to delete it. Thanks for your help.

Michelle, What a great idea! Your "Extraordinary Stories" page should be very interesting reading for anyone! I think it will be especially helpful for new parents to see that it is totally 'normal' to grieve a loss of a supposed 'ideal' plan. These stories will probably help them realize that this child is the missing 'puzzle piece' to help make their lives complete! GREAT IDEA!

Just wanted to let you know that I have added a new section to this site called "Extraordinary Stories."   It's a page to share your story of how DS has affected or changed your life.  Or just to tell how it all began for you.  I never tire of hearing how people learned about Down Syndrome.  Hope you find it interesting, as well!

Janey, We chatted a couple nights ago about oral motor development.I spoke to my speech therapist and she found a great web site that might help you.I briefly checked it out ,it looks great(full of info.) They also have a catalogue this is were she ordered my Nuk. I think this is worth checking out for anyone with any oral motor issues. I plan on spending some time with it.Irealy feel language and communication is terribly important to all other growth.the thing that amazed me the most is the connection between feeding and speech.I hope this helps. Hope to talk again soon.I almost forgot to type the address it's http;//www.new-vis.comm.

Hello folks. This is my first trip to this website... it is wonderful. My wife and I have a 19 month old daughter, Grace, who has down syndrome. We also have a 4 year old ball of fire named Sarah. I just wanted to thank you for this website.. and hope to meet some of you in the chatroom at sometime. Our Gracie is doing great... and I am wishing the same for you and your family. By the way.. for the gentleman who posted a note earlier.. we did not have an amnio. We had quite a shock on Grace's birthday. I wish I knew then, what I know now.

Janey, I enjoyed the live chat tonight! We were talking about oral motor therapy and the Nuk massage brush. I really think I found mine in the baby department of Wal-Mart, but I'm not sure Wal-Mart has made it's way to England yet. I found a web site for Speech Dynamics Inc., they list the Nuk massage brush @ $7.50. It can be used at regular teethbrushing times or before meals or most anytime. I think it would help with acceptance of different textured foods. By moving it across the tongue and other areas of the mouth, it encourages tactile acceptance. We have no feeding problems at this point, but we use this technique for speech articulation. It seems to help make the muscles in his mouth stronger. Since the tongue is a muscle, it seems to reduce its thickness, a little, making his speech a little less thick sounding. You should consult your Occupatinal or Speech Therapist.

(Last bit!) This is affecting the whoile family and I am getting virtually no help with this over here. You all seem so much more imaginative in the US than over here!!! HELP NEEDED! PLEASE!!!

(Continued). Marcus has various behavioural problems that my Family Doctor will not get properly assessed (he seems to think that the obvious diagnosis of Down Syndrome is enough) and wondered if there is anybody out there who could help with coping strategies, keeping Mother sane etc...! Right now, I am running out of ideas and energy. The biggie problems are: Refusing to walk, or only walking/running where he wants to go, only eating mashed potato, cold pasta and green choclate, obsessive bahaviour (same videos, colour green, placing things in lines, panicing if something is "wrong", bossy behaviour, forever saying "No" to everything...I could continue, but I feel that will do for starters!

(I am going to have to sent this massage in 3 lots as my connection will cut me off if it sees no activity after 3 minutes!) This is the first time that I ahve visited this website. It is absolutely amazing!!! I live in England with my son Marcus who is 6 years old who has DS and my daughter Amelia who is 11 years old. I am having a particular problem that I am not getting any help with over here and wondered if anyone could help.

Hi Michelle,I was on the chat line a few minutes ago and didn't have any luck so I decided to read all the funny stories again. You were right, they are great. I had this great idea! At least I thought it was a great idea. You should published all the stories that people have sent you. Every time I read these stories, they make me cry. Not because they are sad but because they prove that our children are normal. Everyone is always there to tell us just what our kids won't be able to do and we hear these things over and over again that we start believing them. I would have loved to have read a book based on funny stories from parents with children with DS while I was pregnant with Arnold. I think it would have balanced things out. Yes there have been difficulties,challenges and hard times but the wonderful ones out weigh the other ones. It's time these children get the respect they deserve. I'm sorry this is taking so much space on the discussion board. After you have read this, please feel free to delete it. You know me, I have a hard time using 20 words or less.

Just wanted to tell all the folks who have submitted Funny Stories to the site in the last week or so: Wow, this part of the site has become so popular that I can't fit the stories on one page anymore.. the system won't let me add anything more to the file!! I'm redesigning it, and hope to have it up-to-date today.. with the newest stories on the top of the first page. I am so glad this section has been such a hit! Thanks for your submissions, Keep 'em coming! People write to me all the time telling me how much they love reading them. Also.. the new livechat format should be in place very soon.. I'll keep you posted.

Dru, I'm with you.. when you say "Do what? My life is normal" This is THE big message I want new parents to hear.. The unknown is scarey. ,,,, I just have to tell you all this.. right now as I was posting this message... Casey came downstairs and wanted me to read him a story... he picked a book for me to read to him.. I suggested we read it together.. we read it together once.. and then as I started this message.. he read it to me again .. by himself... A book called "I am not a dinosaur" ... Normally I would read it to him.. but I got distracted and the next thing I knew... he was reading the entire book outloud by himself. What a joy he is. Full of surprises, just like any other wonderful kid.

Hi! I didn't have the experience of an amnio 14 years ago when I was expecting my 2nd child. Instead, I was given the news shortly after he was born, after I had the opportunity to hold him and see him as a typical child. He looked like any other baby to us. When we got the news, still in the recovery room, my first reaction was that my baby must have been switched! They couldn't possible be talking about the baby that I had just been holding hours earlier. I went through the sadness, grieving, etc., wondering why me? That question has since been answered many times over. He has made our family's life complete. Many times, over the years, friends have asked, how do you do it? My reply is, do what? They really don't realize that to me, my life is normal. We all deal with whatever we have. We make the best of it! Our children are a biological extension of US. We takecare of ourselves (US)! Life is a challenge. The unknown is scary, but our family is our family.Please, anyone out there who has had the amnio experience, please post a reply to cheri on the Message Board on this site, so she can help her friend who has just gotton the results of her amnio. Please share! THANKS!

I promise this will be all, but just a little point of interest, David Pitonyak's wife, Cyndi Pitonyak is an inclusion specialist and consulting teacher for Montgomery County Schools, a rural school district in SW Virginia in its 8th year of providing fully inclusive neighborhood school services for students served by special education. Montgomery County Schools were recognized in the HBO film, 'Educating Peter'. They live in Blacksburg, VA, home of Virginia Tech University. (where my husband went to school, Go Tech!) OK, I'm through.

My last post was a little more than a chat, sorry . . . I got a little carried away.

I agree with Shannon, David Pitonyak, is an excellent presenter. There are actually two audio tapes of his presentations available from the 1998 National Down Syndrome (NDSC) Convention in Dallas. He had a keynote presentation and also a follow-up workshop. If you call the NDSC toll free number (800-232-NDSC (6372), they will be happy to send you a 1998 audio tape order form. The audio tapes are produced and distributed by Professional Sound Images Co. in Norcross, GA. You can also request the handouts from David's workshop. It's a 12 page document titled: What Do I Do Next ...? Supporting a Person With Difficult Behaviors. This document was included in the 1998 Convention Compendium. The audio tapes are $7.00 each, or 8 for $50, 16 for $90 or a complete set of all tapes for $265. Coach Gene Stallings, (football coach, father of a young man with DS, and author of "Another Season: A Coach's Story of Raising an Exceptional Son" was the guest speaker for the Awards Banquet, and a tape of his presentation is available on the same order form. Buying the whole set of tapes is pretty expensive for a family, but a very wise investment for a Parent Support Group or Library. Sometimes, the state Governor's Council on Developmental Disabilities has money budgeted for "family empowerment" and will contribute $$$$ to a group for an educational purchase of this type, again sometimes they won't. Ask the NDSC for contact information for your states DD Council. Sometimes the DD Councils even have money budgeted to help pay for families to attend conferences like this. Check it out! If you want to contact Professional Sound Images direct, they can be reached at 1-800-808-8273 or e-mail: psitapes@freewwweb.com. The NDSC will send you the ordering info and handouts free of charge.

First time sending a message. We have three perfect children a son 6 daughters 11,and 18 mo. My youngest was born with DS. She is so wonderful. She is very healthy. she is also very tiny (16lbs. at 15 mo.). I have learned so much this past year and a half, and have had the best time doing it.

Hi, I am new to this board. I have an 8 year old daughter with Down Syndrome named Danielle. She uses "total communication", sign language and saying the word at the same time. She has learned it very fast. I wish I had started her earlier, but didn't know much about it until I found a speech therapist who was very enthusiastic about trying it with Danielle, and it was the best thing we ever did. She's talking now more than ever.For the lady who asked about behavior problems: I want to The National Down Syndrome Conference, and there was a speaker named David Pitonyak who did some behavior work shops which were very good. I will try to get you some info on him, maybe you could search on the internet for some of his books. I made it a point to go to his work shops because my daughter also has some behavior problems (what kid doesn't?). If you contact National Down Syndrome Congress, you could probably order his audio tapes from the convention. I think they were about $7.00 a piece for each work shop you wanted on tape.

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