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Sami's Mom....Elyse, Samantha's pics are posted. I couldn't find your email addy anywhere so I thought I would post here. Click here to check them out..... http://www.unomas21.com/samantha.htm Thanks for sharing your little darling with us all.

I have just been assigned as co-chair of our little group in Bakersfield. What can we do for our Oct. meeting that will bring in older and younger families and promote awareness for the Nat'l DS Awareness month? Any ideas or suggestions?

Hi. I am a special education student and I am doing a report on Mosiac Down syndrome. I'm having a hard time finding information on Mosiac D.S.- the vast majority of info is on trisomy 21, which is why i want to report on mosaic- it's less known. Any ifo you guys can give would be so helpful!! (sites to go- personal stories- myths- etc) Thanks!

Robby, Sun night in the chat room you asked if anyone had a problem with there child shaking there head. Before I could reply I lost everybody in the chat room. My son 14months old was doing this about 2months ago and was shaking his head for hours at a time I got concerned and called his developmental doctor he had me take him to his ped. to have his ears checked out, it turned out he had a ear infection after only a few days of taking his medication he stopped shaking his head.

Jennifer, there is a list you can join called inclusion some of the people on their might be able to help you. To join go to http://www.onelist.com and register. then in the search part type in inclusion-topics, that should take you to the site and join there. Or if it doesn't scroll down unti you find the inclusion-topics site. hope this helps you some. Cindyg

Thanks Cindy.

Thanx to everyone who gave me suggestions on helping Cassidy learn to drink out of a sippee cup. She seems to have it down and for 11 mos. I'd say that is pretty good. I think the most helpful idea for us was using a cup with a straw in it. She took right off with that idea. Thanx Again!

Thanx to everyone who gave me suggestions on helping Cassidy learn to drink out of a sippee cup. She seems to have it down and for 11 mos. I'd say that is pretty good. I think the most helpful idea for us was using a cup with a straw in it. She took right off with that idea. Thanx Again!

Hello all. I am podiatrist from Australia, who practises in the area of Down syndrome. I have been working with individuals with Down syndrome for some 3 yrs, completing Honours research in foot function in individuals with Down syndrome. I am also involved with a medical group which travels Australia assessing children with Down syndrome. I find this as a major source of enjoyment and work. I would also like to commend the function of this website, which provides individuals such as myself to communicate further with parents of children with Down syndrome and individuals with Down syndrome. I hope that you continue to provide your important function for many years to come. I also welcome any emails, thoughts, questions that anyone may have in relation to individuals with Down syndrome, their mobility and foot pathology. Kind regards Nikolaos Nikolopoulos B.Pod(Hons) Victoria, Australia

TO Michelle (Ciarra's mom) I am so sorry that was in the archives. I don't read all of them before I upload them and this shouldn't have been put on the archives at all. My total screw up here. If I had known that "Sue" said that I certainly wouldn't have archived that chat. BUT, PLEASE don't listen to this person, probabley a poser anyways. Ciarra is gorgeous, and you have every reason, right and even responsibility to Brag about your girl!!You bring encouragement to new parents, and hey, someday Ciarra can read the archives and "hear" her mom brag!!! Don't let this person get to you...EVERYONE AGREE?? Check Ciarra out on the photos, and all the other beautiful kids there. This is a place of love and support, and remember that you are loved, and Ciarra is beautiful! Cindy (Kaylee's mom!)

Reading through archived chats, I came across a comment from a person named Sue who felt the need to tell me that my beautiful daughter, age 15 months, had "very heavy DS features; and her tongue really hangs out. Does she have trouble eating?" Reading it genuinely broke my heart. (Not because I believe it, Ciarra is a gorgeous gift from God.) But because of the hatred behind it. Perhaps, Sue, you find my baby girl unattractive. I happen to think she is an absolute living doll. What hurts most is that, apparently, your problem is with ME, and you choose to make derogatory remarks about a BABY to get to me. Lady, may I raise my child to have more respect, more couth, more love, and more tolerance than you. God has given me this loving and beautiful little girl. I love her just as she is, a reflection of the angels themselves. The most amazing thing is, if you were the ugliest, cruelest person on Earth, Ciarra would love you anyway. I will follow her example...you are forgiven for your ignorance. Michelle

Hi everyone, I know this is short notice, but if you live in the Detroit area, we are having a Buddy Walk tomorrow at Nelson Park in Sterling Heights (off 15 Mile btwn Ryan & Dequindre) from 11 am - 5 pm. We will be offering Sub sandwiches and entertainment. I know it is probably going to be a crappy day for it, but won't you join us anyway, the kids always have so much fun! We (Families Exploring Down Syndrome) are also having an Apple Orchard Outing on Sunday, October 17th at Stony Creek Orchard and Cider Mill in Romeo off 32 Mile btwn Mound & Van Dyke from noon til 5 pm. And on October 30th we are sponsoring a conference in conjunction with the National Down Syndrome Society at the Van Dyke Park Hotel in Warren. You can visit my website for more details (hometown.aol.com/kmariesilv/page/index.htm) or email me and I will mail you a registration brochure. Take care everyone and God bless!

Hi,Stephanie. If you would like to chat feel free to e-mail me.

is anyone out there to talk to.

Hello I am the mother of a beautiful 8yr old girl, and we are having a problem with her public education. It seems that since she has moved upstairs to the third grade, she has been having some behavior problems. I beleive these problems stem from the change in her environment and staffing changes, and I can't seem to make the educators understand that so my question is Is there somewhere I can get this information to prove my theory? I am open to any and all suggestions please e-mail me with some advice. Thank you Jennifer

hello all how is everyone? we are all good. Marie I know debi and i do know that she meant noharm to you please dont ever feel as though you can not express your feelings of concern or anxiety or happiness with us . we all have them but debi is a straight forward person and has gone thru so much in her life. that she automatically feels as if everyone should be as strong her at times when we all cant. and that is ok. we are all human and we deal with things in our own way. please keep your comments posted here we allwant to hear from you . i know i do. and on another note. my website address has changed please go to it and check it out. if you have any opinions or comments please email me there is a link to my emial but befroe you go keep in mind that it is not completely done i am doing more work on it daily and it is very hard for me as i do not know a lick of anything about html. but i am learning. thank you. and please dont hate debi, she is who she as we are who we are. some of us are more vocal than others but all comments should be made and taken with a grain of salt.. Melissa. http://www.users.uswest.net/~dupontclan/

hello all how is everyone? we are all good. Marie I know debi and i do know that she meant noharm to you please dont ever feel as though you can not express your feelings of concern or anxiety or happiness with us . we all have them but debi is a straight forward person and has gone thru so much in her life. that she automatically feels as if everyone should be as strong her at times when we all cant. and that is ok. we are all human and we deal with things in our own way. please keep your comments posted here we allwant to hear from you . i know i do. and on another note. my website address has changed please go to it and check it out. if you have any opinions or comments please email me there is a link to my emial but befroe you go keep in mind that it is not completely done i am doing more work on it daily and it is very hard for me as i do not know a lick of anything about html. but i am learning. thank you. and please dont hate debi, she is who she as we are who we are. some of us are more vocal than others but all comments should be made and taken with a grain of salt.. Melissa.

Marie, I'm a bit behind on my respose, but I would like to hear how you made out at the doctors. I sure know how scared you must be because that was me about a year ago. I took my (now 3 1/2) son for the neck X-rays because it was recommened and I was at work when I got the results and I creied my eyes out. Thank God I have a lot of support at work. I did the only thing I could and got as much info as I could. I took Alex to see a specialist and he said that all he wanted to do was watch him closely and keep him out of all contact sports. I was real scared and felt very unsure about it, but he said that they are discovering that LOTS of children with DS have this and that most of the time nothing is done. He even feels that some day they won't even make it routine to chekc for this. I'm not sure how I feel about the answer, but I did get more than one opion and got the same. SO please let me know how things go for you. Maybe we can help each other out and anyone else here. My prays are with you. Your not alone with this and with all your other concerns.

Hello again! Thanks to everyone who responded to the request for help with my book. It is coming along very well. I haven't heard from everyone who asked for the list of questions, hope there are more responses soon. I am really enjoying the answers, really making me think. Also, thanks to everyone who has written asking if Ciarra is better, she had a VERY nasty run-in with a viral infection, and things got more than a little scary. She is doing much better, although she is still very weak, not back to her crawling and cruising yet. She will get back though, and will catch back up and be walking full throttle in no time. It's so nice to have you guys to talk to, and have people remember her name and ask about her. I feel a though the gift I got when she was born just keeps growing, bringing me wonderful friends and relationships I would not have had without her. I am blessed, and I know it. Michelle

Howdy ! October is Down syndrome awareness month. In San Diego we are having a Buddy Walk on Saturday, October 16, in Balboa Park at the War Memorial Building. Let's all pull together and support our support groups. PEACE

If anyone is interested in reading more about todays findings on folic acid they have a full article on MSNBC.com under the health section.

"USA TODAY" Folic acid may cut Down syndrome risk Taking folic-acid supplements, already shown to cut the chance of having a baby with spina bifida or related birth defects, also might reduce the chance of Down syndrome, suggests a study out Tuesday. Food and Drug Administration researchers compared blood samples from 57 mothers of Down syndrome children and 50 mothers of non-Down children. Mothers of the children with Down syndrome appeared to be more likely to have problems metabolizing folate, another name for folic acid, than the other mothers.

I was wondering if anyone got a look at the USA Today front page (Today). There is an interesting article regarding a study they did on mothers of DS children and it goes on to explain a possible link between DS and Folic Acid-- Just thought I'd share for anyone interested.

I was wondering if anyone got a look at the USA Today front page (Today). There is an interesting article regarding a study they did on mothers of DS children and it goes on to explain a possible link between DS and Folic Acid-- Just thought I'd share for anyone interested.

hi everyone, thanks for reading through my post, which now, as i read back on it i feel a little loony!!! but the feelings ARE real, and today i am doing ok, thanks for the responses and i will just be glad to see the doctor tomorrow, and i guess i have been imagining the worst case scenerio!! But he is going to be seeing a child psycologist for a behavior asessment at Dupont hospital, which is a fantastic hospital for kids, which is where he is going for the neck too. i will keep you posted tho. my ever full of surprises son gave me one last night. he cleaned the living room up for me, took his bath with some assisstance of course and went to bed, stayed there all night!!! guess he thought he would give mommy a break! thanks for listening.

Marie, I don't think you are as alone as you think in your feelings. Somedays I'm also in Alaska! But usually in 1 or 2 days I'm back in Holland again. Any child can be exhausting, I know because My 11 yr old "normal" daughter can make me as emotionally and physically exhausted as my 2 yr old D.S. son can. Our developmental specialist told me that if behavior became a problem to contact a behavior specialist. I hope this helps some, I just want you to rest assured YOU ARE NOT ALONE!

About necks. We asked our neurodevelopmental therapist about this and she said that there were differences of opinion about how major a problem it was. In this city, they tell you not to worry and that in the days before they scanned for instability, DS children weren't becoming paralysed left right and centre, if you see what I mean. So don't panic, it may not be such a big problem after all. Fran

Sherri, Hi You can find information about Nutrivene D at their web site the addy is http://www.targetednutritionalintervention.com I believe that is the name of the site or the phone number to them is 1-800-899-3413 ask them to send you an information packet and they will. The site might also be www.nutriveneD.com I am not sure of it. I will have to look it up and see. But that is their phone number. also there is a list you could join that talks about nutrivene D. there is much information on the list and lots of people to help as well. the list is for people who have their kids on it and also for parents who are trying to find out information about it. Go to the onelist that is http://www.onelist.com and register, then in the search part type in DSTNI and then join the list. The posts will come directly to your e-mail. Take care, if you want more information you can e-mail me if you would like to. I think there is another address and that is http://www.trisomy21.org

Marie, Hi they had tested my daughter for the neck thing and she was fine, but while the dr. was testing her for it, I had asked him a few questions about it. He had said that if they have to do surgery on the kids it is a very common type of surgery for kids with DS. Also he had said the risks are very minimal. I had my daughter looked at when we took her for her feet to be looked at. Also they can tell just by looking at the back alot of the times and that is how she was tested for it by two drs. up at Children's hospital. I hope this helps you somewhat. Also Terri if you are reading this, how are you doing and glad to hear that Nick is starting to go off on his own. Give him a big clap for us. Take care, Cindy

This message is for Marie. You sound like a lady who needs a hug, a "stiff" drink, and a massage! My twins are 2 3/4 yrs. old and I have a few of those rough days myself! I know what you mean about the comments. If I hear one more person say "God only chooses special parents for special children" I might smack 'em! I'm not that special! However, I do believe that God sees a strength in me that I don't always see in myself. I'm especially aware of it when I'm having a particularly bad day and don't think I can stand another minute of it! I wish you lived in the Dallas area, our support group is having a saturday seminar in "Positive Behavior Stragegies" Given by Dr. David Pitonyak. I just happend to have the brochure in my purse & was contemplating whether this topic would apply to twins approaching (rapidly!) the "terrible twos". Sometimes we all need to vent, and I do believe you are allowed. I sometimes wonder if I am doing all that I can for my boys. The thought of "double" the work sometimes fill me with "dread". I know your child is your life, but please make sure you take some time just for "you" too. If you're all stressed and upset than you won't be doing your best! A hard lesson I've learned (due to increasing high blood pressure) myself lately about not "stressing" over every little thing. I know in my heart I'm doing the very best I can and what I feel is best for my boys. I hope you're feeling better soon! Judi

you know, sometimes i can relate to what you other parents say the "special angel from GOD" and my "little gift from GOD" and all these wonderful one liners that might apply most of the time. But you know what? Not only did i miss Italy, i skipped by Holland and landed in alaska!! Holland would have been a nice place i suppose. Why is it all i hear is how wonderful things are all the time, when i know that 80 percent of my life with my son is a struggle to get through each day in one piece. I did not have the feelings at his birth like i have heard other parents describe, i accepted him as is, i was nineteen years old and alone. I read all i could about DS talked with other parents, but i was not prepared for the bheaviors that present themself now. It must be my fault i tell myself, though i feel like every waking momment is spent trying to make things ok. I dont know why my son screams and kicks and self injures and why at school they cant see any of what i talk about. so it must be my fault and my husbands, yet why do we feel like we are lost and dont know what to do. I have loved this child from the depths of soul since his birth, we have used consistent disipline and caring, raised him in GODS love, hes our only child so he gets all the attention he needs, yet most nights my hubby and i fall into bed exhausted and wondering where we failed yet again. ive found only 2 other people so far who can relate to this!! DOES ANYONE COMPREHEND WHAT I AM SAYING???? ANYONE AT ALL????? i'm sorry its no ones fault here i know this and i feel losuy for yelling. I am just so fustrated lost and tired and wonde rhow i will do this the rest of my life!! how will i eve rbe able to have more children and give them what they need??? my son can be so loving and has so much intelligence i se eit in his eyes and in what he can do. I know the capacity is there for him to become a capable good young man, but it will all go to hell unless the bhevior is gotten under control,and i have lost all ability on how to do that. I am grieving. i am grieving for the ideas i had for his future that may never come to fruition. I grieve for my inability to figure this thing out, and i grieve because i want to see my son become the best he can be. I just dont know anymore. But i will keep hanging on, and hope this gets better and keep my sense of humour, because if i lose that i will be finished. it helps keep me going. I feel like i dont even fit in with other parents of kids with DS. mine seems to be a whole different breed, living out there in alaska, waving to the ones in Holland and wondering why they he isnt there.

Dyanna, Just wanted to thank you for the post. I really appreciate the positive feedback from your post and the emails I received. My head is still swollen. LOL Congratulations on Cory's rolling - what an accomplishment. Isn't it just amazing how much these milestones mean? I know that Nicholas never stops amazing me - I knew that is true with all parents. If only we had known, when they were born, what we know today - what a difference those first few months would make. Anyway, thanks again - everybody. Terri

Hey everyone! Hope all is well with you all. I just wrote to say hi and share joy with the lady whose 21 month old stood up on his own!!!! Yeah!!!! My 8 month old rolled over for the first time last week at a DS coffee. We were all cheering for him and I couldn't have been more proud, especially with the audience he had! I love this site and I love all the encouragement I get from all of you AWESOME Moms, Dads, Grandparents, Aunts, Uncles, Friends, Teachers, Ministers, Siblings.... Have a great day! Love, Cory's Mom.

Ok. I GIVE UP!#$#@$#$###$@$#@$#@ I can't seem to get my whole messages sent si I guess you won't be able to understand why I am saying good-bye. I don't know what else to do.Debi

To Marie and everyone on Uno Mas! I guess I don't know how to send these messages because my first one was cut off in the middle and my second one disappeared altogether! If this one messes up.I give up!

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Name: Debi J. Willis
Email:Debiw3@webtv.net
Date: Saturday, September 25, 1999 at 07:47
Comments:

Dearest Marie and everyone on Uno Mas! When I told Nick's dad about his neck problem he went.bye bye. Instead of staying on Nick's side he decided it was too much for him to handle and off he went to never-never land. He has not talked to or seen Nick in almost two years now and Nick doesn't understand why. I do. At first I was very angry and hurt; then by the grace of God, I decided to forgive him because it WAS too hard for him to handle. Period. He will miss out on the opportunity of a lifetime but that is his choice. I have no-one to help me protect Nick so I have had to get down to brass tacks and become a "fighter". I have also cried a lot because I just couldn't do ANYTHING about the neck problem. I felt so helpless and hopeless. Every single day I wonder if today is going to be the day that someone calls me and tells me that he is paralyzed. God Bless you all.......Debi J. Willis

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Name: Michelle
Email:jimichelkj@aol.com
Date: Friday, September 24, 1999 at 22:54
Comments:

Wow! I know its none of my business, but I felt the need to put my 2 cents in. Poor Debi, 1st SHE gets all hurt and offended by peoples reactions to her post, then she posts again saying "gee, sorry, I shouldnt have gotten offended" and now offers help to poor Marie, who is scared out of her wits about HER son. Marie, thinking she was being told to stop sniveling (hey, its ALLOWED!) gets offended too. Geesh. What is so amazing is, we all try so hard to be ok with the diagnosis given our kids, but we are all still a bit fragile, thinking the world is somehow this awful place sometimes. What we ALL need to remember is that every person on this board is here cause they, too, have a child with ds. We are all just a bit terrified about the unknown, and we would all dearly love to help any other parent who we think nees a boost up once in awhile. My point is, we have all been in both these womens shoes, the scared and the comforting, the giver and the taker. I for one dont always know the right thing to say, but by letting someone know I care, and trying my best to help, I feel better about myself. PLEASE, remember that we are all human, we are all going through the same things, and we dont all have the same perspective, family support, finances, or wherewithal to ALWAYS do what sounds right. The only perfect people here are these beautiful children who have brought us together into this community of intimate strangers. Lets not forget, we are all just trying to survive. No one, for the most part, wants to hurt anyone else. Its a matter of perspective. Please dont lose it. These kids need us all, we are their hope for a brighter future, and they are our hope for a piece of humanity. Lets try hard to be tolerant, isnt that exactly what we ask of the world? Marie, I hope your boy is ok, and Debi, I think often about Nick, hoping his world is better soon. Kindness...thats all. Michelle

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Name: Lea
Email:leadavis@geneseo.net
Date: Friday, September 24, 1999 at 21:38
Comments:

Dear Marie and Everyone who posts at this or any other message board, receives email or chats online, I just read through the messages on the board from Marie and Debi's reponse to Marie's post. I think we all need to calm down and not take everything so personally. Marie, I think...no, I know Debi was trying to be supportive. She was ready to do battle with you! She's been through the same frightening doctor visits and she wanted you to be encouraged. She wanted you to get strong. You are the only one your boy has to fight for him, to get him the care he needs. That's all Debi was trying to say. So she handed you a tissue and said it's time to get busy to do the best for your son...and I'm here to get you started. This is the place to come for encouragment, comfort and advice. But please, don't think you "hear" how people say things. Don't assume they are against you because they happen to have a different opinion. And please whatever you do, think and re-read a post or letter. I tilt my head and re-read things, trying to get a different perspective on things. Maybe someone is feeling playful or silly when they write and when you read it, because you are upset, you "hear" them in every way BUT the way they wanted you to. We can't "hear" one anothers "tone" or "attitude" here. We are here to help and if there is the occassional post that seems to attack, we just ignore it. Don't ever assume we are all going to say the same thing. That's what is so nice about the net...variety. And if you still feel someone didn't respond the way you needed them to, say so.

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Name: Michelle from Uno Mas
Email:michelle@unomas21.com
Date: Friday, September 24, 1999 at 16:11
Comments:

Leslie and Jim ... I don't have your email address so I thought I'd tell you this here...I've finally posted Caleb's pictures. I was thinking that I was having trouble with my scanner or software ... maybe it is, but I'm starting to wonder if Olan Mills puts some kind of "no copy finish" on their pix... because I just can't get a scan off those two pictures. I can't figure out what I'm doing wrong. Here is Caleb's page www.unomas21.com/calebl.htm SORRY (!) for the long wait to see these posted. I kept thinking I could get a clearer scan ... but I haven't been able to do it. Any suggestions, anyone?

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Name: Marie
Date: Friday, September 24, 1999 at 16:11
Comments:

you know, i asked for advice not to be yelled at and told to stop crying and get busy! I happen to love my son and i am worried for him and he has a appointment soon to discuss the problem the technician found. I didnt know on this board it was against the rules to express concern. I am sorry i even posted it now.

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Name: Melissa J. DuPont
Email:mjd2@USWEST.NET
Date: Thursday, September 23, 1999 at 18:00
Comments:

hello. I was just wanting to let everyone no that i now have a partial website up and running. please stop by and let me know what you think. just please keep in mind that i am no where near being done!!!! thank you, and please email me at abov3 address to let me know what you think any opinions and advice will welcomed http://www.users.uswest.net/dupontclan/aspenjason.html and again thankyou . Melissa

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Name: Melissa J. DuPont
Email:mjd2@USWEST.NET
Date: Thursday, September 23, 1999 at 18:00
Comments:

hello. I was just wanting to let everyone no that i now have a partial website up and running. please stop by and let me know what you think. just please keep in mind that i am no where near being done!!!! thank you, and please email me at abov3 address to let me know what you think any opinions and advice will welcomed http://www.users.uswest.net/dupontclan/aspenjason.html and again thankyou . Melissa

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Name: Debi J. Willis
Email:Debiw3@webtv.net
Date: Thursday, September 23, 1999 at 16:02
Comments:

Marie: Time to stop crying and get busy! My son has a bad form of the atlial-axil(?) problem so I know a lot of what you are feeling. If your child can be helped by surgery then start researching the surgical procedure and then LET GO AND LET GOD. HE CAN:i can'T. MY SON NICK, CANNOT BE HELPED BY SURGERY SO HE RUNS A TERRIBLE RISK OF PERMANENT paralysis if he does the wrong kind of movement and his activities have been severely limited but he still works, goes bowling and walks. It seems this is a somewhat common condition in ds people so there shopuld be lots of help for you out there. I think the one thing that I did that was most beneficial for my son when he was going through so many surgeries was to learn about exercises that would increase his breathing ability so that he could recover from the anesthesia better. We did "yelling' exercises and I had him do anything aerobic and anaerobic that I could find( that he was capable of doing). I talked to anestheologists, physical therapists and then I made sure I checked out the reputation and credentials of his surgeon.

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Name: Marie
Date: Thursday, September 23, 1999 at 15:16
Comments:

hello, i really need some advice/comments. my son with DS is seven and he just x-rayed for the neck instability and i never dreamed there would be a problem but i got the call today that they found something an dive just been crying my eyes out about it. i know some about it but he goes next thrusday to see the orthopedist. has anyone else been through this, i feel so bad for him and real nervous. can there be mild forms of the neck problem or does it always require surgery? please, if anyone can answer and your prays are always welcome too thank you... a worried mommy

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Name: Terri
Email:terri.rogers@city.pittsburgh.pa.us
Date: Wednesday, September 22, 1999 at 12:56
Comments:

Hi Everybody, I am overcome with the need to brag about my little guy. He turned 21 months old on September 20th and in honor of that occasion decided to STAND UP ON HIS OWN. He has been pulling to a stand for awhile but over the weekend began to 'let go' and stand without holding on for a little bit. Monday night he suddenly stood up and has been doing it ever since. I am so proud of my little boy - I was crying my eyes out. If it is possible, I think Nicholas was even prouder of himself - he laughs and claps each time he does it. What a joy ! Thanks for being here to let me share this with you guys. Have a great day !

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Name: Tracie
Email:tlbjkl@aol.com
Date: Wednesday, September 22, 1999 at 12:31
Comments:

Hi! I am wondering about this white ribbon for the month of October. I think it is a great idea, esp with all the other ribbons people wear. If we wore a white ribbon people would start asking about it. what does everyone else think?

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Name: MICHELLEMC
Date: Wednesday, September 22, 1999 at 10:18
Comments:

I LIKE THIS PAGE AS I'VE NEVER REALLY FOUND ONE THAT YOU CAN TYPE COMMENTS TO. THIS IS A GREAT IDEA!!!!> <+--00==-0009998609-==---=============54444cbhnhj p[p[=[=>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>...

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Name: MichelleMc
Date: Wednesday, September 22, 1999 at 10:15
Comments:

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Name: MichelleMc
Email:mcintosh@unomas21.com
Date: Tuesday, September 21, 1999 at 00:34
Comments:

Debi, I've been so busy that I haven't had time or the nerve respond to your post. Thank God for Scott, Cindy, Connie and the several others that help keep this site afloat when I flake out. But I really do want to respond to your uncomfortable dilemma. I want to express my support to you, to encourage you to continue to pursue whatever YOU feel is best for your son. Don't worry about what is politically correct. Pursue your where your heart leads you... you are his mother, and care more for his best interests than anyone in this world. I say, follow your heart and do what you know is best for your son.

Sometimes I keep quiet on topics of inclusion, because I know that we are no "poster family" for mainstreaming. I fully believe in it when appropriate. I tried it for a year, and decided to re-adjust my position to do what was best for my son. I recognize the slight frowns when I say that my son spends part of the day in SDC, but I can live with it because my first concern is the best interest of my son.

I am very grateful to the people who pushed and made a fuss for the many choices I now enjoy. I think it's a great thing that he has so many opportunities to interact and be a part of the mainstream kids. But I do intend to constantly weigh the appropriateness of those options in relation to his needs. He is a kid, not a cause. I just want to do what is best for my son.

I was going to email you privately about this, but I thought since you had the guts to speak openly about your dilemmna, I would answer you just as openly. I wish you the best, in whatever your decision.

Michelle

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Name: MichelleMc
Email:mcintosh@unomas21.com
Date: Tuesday, September 21, 1999 at 00:19
Comments:

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Name: Debi J. Willis
Email:Debiw3@webtv.net
Date: Monday, September 20, 1999 at 23:32
Comments:

Well, I have finally found someone who will help Nick and I. I was told by my doctor to call Adult Protective Services about Nick's situation and the lady there referred me to my local......ombudsman.. We had an outstanding conversation and by golly, it looks like Nick will be vindicated after all! Hallelujah! I am so happy. My son currently has NOTHING>>>no clothes, no money and no personal possessions because it was stolen from him in a way that makes it look like HE WAS AT FAULT! Can you believe it? Thank you so much Melissa. You are a very kind person. If anyone else would like to write to Nick in his new home please contact me at my e-mail address and I will forward his mail. He dearly loves baseball cards and cards of any kind and he LOVES TO GET MAIL! If anyone has some extra time he could sure use a pen pal. Thank you again Melissa. I don't know what I would have done if I had never been able to meet you> God Bless......Debi

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Name: Melissa DuPont
Email:mjd2@uswest.net
Date: Monday, September 20, 1999 at 19:35
Comments:

I JUST WANTED TO SAY THAT I HAVE FOUND MY FAMILY WELL THE REST OF IT. ON MY DADS SIDE, AND I HAVE ALOT OF FAMILY AND I HAVE A COUSIN WITH AUTISM HE IS THE SMAE AGE AS ME. I AM SO THRILLED AND THEY ALL KNOW ABOUT JASON AND WANT TO MEET HIM, I HAVE GIVEN THEM THIS WEB SITE, SO JUST MAYBE THEY WILL POST A MESSAGE AND DO SOME READING UP ON DOWNS SYNDROME.. YIIPPEEEE ;-) EMAIL ME IF YOU WANT AND DEBI, I KNOW WHAT YOU ARE GOING THRU I WILL MAIL A CARD TO NICK.. ALL MY LOVE MELISSA AND JASON DUPONT

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Name: Melissa DuPont
Email:mjd2@uswest.net
Date: Monday, September 20, 1999 at 19:34
Comments:

I JUST WANTED TO SAY THAT I HAVE FOUND MY FAMILY WELL THE REST OF IT. ON MY DADS SIDE, AND I HAVE ALOT OF FAMILY AND I HAVE A COUSIN WITH AUTISM HE IS THE SMAE AGE AS ME. I AM SO THRILLED AND THEY ALL KNOW ABOUT JASON AND WANT TO MEET HIM, I HAVE GIVEN THEM THIS WEB SITE, SO JUST MAYBE THEY WILL POST A MESSAGE AND DO SOME READING UP ON DOWNS SYNDROME.. YIIPPEEEE ;-) EMAIL ME IF YOU WANT AND DEBI, I KNOW WHAT YOU ARE GOING THRU I WILL MAIL A CARD TO NICK.. ALL MY LOVE MELISSA AND JASON DUPONT

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Name: Dora Ramos/Zapata, Tx.
Date: Monday, September 20, 1999 at 17:06
Comments:

Diane, Now that I know that white is the unofficial color for DS and I know October is DS month, I'm going to take a white bow and put on my car antenna for the whole month. Maybe we should all try it.

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Name: Dora Ramos/Zapata, Tx.
Date: Monday, September 20, 1999 at 17:02
Comments:

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Name: Dora Ramos/Zapata, Tx
Date: Monday, September 20, 1999 at 17:01
Comments:

Connie, Thanks for the info on the DS Chart. I looked it up and it helped a bunch. Sorry it took me so long so Thank you!!!

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Name: Diane
Email:drf218@earthlink.net
Date: Monday, September 20, 1999 at 12:03
Comments:

There's a discussion going on at UpsNdowns about ribbons. October is DS Awareness month ( white ribbon) and also Breast Cancer Awareness month (pink ribbon). Now, Disability awareness is March (we thing) and is a silver ribbon. Can anyone give me more colors and months? For Nick's EI center, I am making up a bunch of ribbons. Actually, white is the "unofficial" color for DS so what I'm going to di is make two tone ribbons silver and white for DSAM. Any suggestions or comments???

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Name: Diane
Email:drf218@earthlink.net
Date: Monday, September 20, 1999 at 12:00
Comments:

Greg, That's wonderful news about Jake speaking. You must be very excited!!! Also, I'm scheduling an appt for the DS Clinic today!

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Name: teresa
Email:Yahone@aol.com
Date: Sunday, September 19, 1999 at 22:27
Comments:

I have a daughter almost four years old with downs and lately I've been overwelmed with decisions on schooling. Special ed vs. inclusion. I live in Brooklyn, N.Y. and all the inclusion programs I've been to never really had a child with downs in it and she would propably be the first and I just want to make the best decision for her. I know she could benifit tremendously having the "typical" children as role models but I don't want her to feel so out of place and lost in the suffle. I would love to hear from a parent who can relate or who has a child in an inclusion program already.

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Name: Greg Fillman
Email:Gregf24@aol.com
Date: Sunday, September 19, 1999 at 14:28
Comments:

Hi to all, My son Jake does not speak he is 6 years old and has a seizure disorder, and he is very delayed. He does babble alot though. Well anyway Jake was on the bus friday and the Bus driver said to the aide on the bus,Oh Jake's in a good mood today and then they swear they heard Jake say I'm in a good mood today. Jake was the only student on the bus and two people heard it. The school teacher told us that they have heard of this happening, that when a ds child is relaxed that sometimes things can just come out. Well we can only pray that this is the start of more things to come. Jake lets us know what his needs are by sounds, but it would be so wonderful if we could communicate with him, i wish somethimes i knew what he was thinking. Just wanted you guys to know what's happened. Thanks Greg Fillman Visit his WEBSITE at http://members.aol.com/gregf24/jake.html

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Name: Greg Fillman
Email:Gregf24@aol.com
Date: Sunday, September 19, 1999 at 14:15
Comments:

Hi to all, The New Easten Pa Down Syndrome Center Website is up and running, Give us peek. Thanks Greg Fillman http://members.aol.com/epadsc/epdscp1.thml

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Name: michelle
Email:jimichelkj@aol.com
Date: Sunday, September 19, 1999 at 08:54
Comments:

OOPS!Sorry!How about 9 PM Sunday night Eastern time USA?? I do tend to forget the world is slightly bigger than Bangor, Maine. Small town, world revolves around us, ya know? GEESH, I can be a real dummy. If you can make it, specially those of you working on the book, that would be awesome. Thanks. Michelle

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Name: Lea
Email:leadavis@geneseo.net
Date: Saturday, September 18, 1999 at 22:16
Comments:

Michelle....what time zone is that 9 p.m. chat? Thanks

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Name: michelle
Email:jimichelkj@aol.com
Date: Saturday, September 18, 1999 at 19:27
Comments:

anyone care to chat at 9 pm? Short notice, but we can try!?

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Name: Stephanie Jaquith
Email:sr_jaquith@hotmail.com
Date: Friday, September 17, 1999 at 11:47
Comments:

I am a student at Bethel High School in Spanaway Washington. In my child development class we are studying birth defects. I was wondering if anyone could send me some information on living with a person who has down's syndrome. My e-mail address is sr_jaquith@hotmail.com. I would add a great deal of detail to my report. Thank you for your time. Stephanie Jaquith

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Name: Michelle
Email:jimichelkj@aol.com
Date: Friday, September 17, 1999 at 08:39
Comments:

THANK YOU to everyone whp has generously responded to my request for help with the upcoming book. I have been quite surprised by how open and helpful you guys have been. Right now, we are at the early stages, working on getting together a good list of questions new parents might have, some of the ideas you guys have had are really great! I hope you will sit down and as a family, think about what the biggest fears you had early on where. The book, by the way, is going to be called "Angel Unaware: What It's REALLY Like Having A Child With Down Syndrome" thanks again, keep sending your questions, soon we will be in stage 2, answering the hard ones.

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Name: Debi J. Willis-Reid
Email:Debiw3@webtv.net
Date: Thursday, September 16, 1999 at 18:58
Comments:

Everyone, please forgive me. I was much too rash and I guess I am still in a militant mode when it comes to me and Nick. If anyone would like to write to Nick please e-mail me and I will forward his aaddress. He LOVES getting cards and baseball cards. He is a loving child and I am thankful he is in my life. I hope some of you will share our life with us..Thank you uno mas! This has opened up my eyes soooooooooo much. God Bless

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Name: yolanda bunch
Email:bunch_y@fairfield-city.k12.oh.us
Date: Thursday, September 16, 1999 at 13:36
Comments:

Does anyone have ideas of behavior modifications for defiant behavior in a child in kindergarten with downs syndrome

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Name: Cindy
Email:scottcindy@jps.net
Date: Thursday, September 16, 1999 at 11:15
Comments:

To Debbie- Actually, I didn't have one negative thought about you or your son, and maybe I speak for others here at unomas? I'm sorry that you feel as though others look down on you because your son is not living with you. I think you're being way to hard on yourself. You're doing the best you can, and it sounds like you've come a long way-Great! I'm sure it was a lot of work, emotionally and mentally, but you're changing, so be proud of yourself. The best thing I think you can do for your son is to continue to advocate for him, and pray for him. God is concerned about his well being too, and He's much bigger then you or I! :) Unfortunately many of the parent's I've met through unomas have younger children, so have not yet had to deal with "adult" situations, such as living arrangement and guardianship-that may be why you haven't heard from many of us. We just aren't there yet so don't know the answers. Any one out there that can help?? Good luck and be strong! Cindy (Kaylee's mom.. www.jps.net/scottcindy )

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Name: Debi J. Willis
Email:Debiw3@webtv.net Debiw3@wbtv.net
Date: Thursday, September 16, 1999 at 06:25
Comments:

I think that many of you must have read my posting and decided that I should be ostracized as I had my son in a group home. Many of you must have asked yourself how could I have done it? Why do I not have my son at home where he belongs? etc.......... Believe me. every day is a torture for me for just those reasons. As a clean and sober hard core drug addict and alcoholic I sincerely thought that all my problems would vanish into thin air once I finally cleaned up. One of my first priorities was to bring Nick home. He expected it..I expected it. During my rehabilitation I learned a lot of things about myself that have totally exasperated my life..ie...I was diagnosed with a severe case of depression, post traumatic stress due to spousal abuse, a horrendous case of obsessive-compulsive disorder and ADD. Good God, could anything else be the matter? Well, after a lot of soul searching and therapy and lots(!) of A.A. meetings etc. I realized that Nick would not be in a good home enviroment until I had gotten some of this under a semblence of control. I put my son in a home when I realized I couldn't be a productive parent. It is pretty bad when your child is crawling on the floor and you happen to look down and he is playing with a dirty needle. I have been a drug addict and alcoholic (black-out drinker.....used to take him to the bars and "forget" he was there!) for almost all of my life...since I was five. I am now 45 years old and struggling on everyday life......none of this(did I happen to mention that I was an incredibly physical, verbal and emotional abuser?) EVER STOPPED ME from loving my son. As of today I have begun to work for Nick the only way I know how. I go to these forums to learn as much as possible so I can keep an eye on his situation. I interact with him constantly yet I just do not have the emotional strength to bring him home...yet...! One lady from the message board wrote me and really laid into me about why Nick was having so many behavorial problems. I totally understood her position yet when I wrote to her and explained our situation she apologized. Please do not discriminate against me and Nick because we aren't together. I am doing all I can to get to that point. Until then I stay in touch with any resource available that will allow Nick and I to grow together. We talk all the time about why he lives "there" and I live "here". He knows mom is "sick" and is getting better and I love him for his courage. We have been thru the surgeries, the ear tubes,the almost constant attacks of bronchitis, numerous infections that would only go away with antibiotics, he wore "depends" until he was 15 due to bowel problems (he got himself out of them because he wanted to be able to wear cowboy jeans!) as a matter of fact our doctor was our best friend for a long time! Now he is 19 and we are having a hard time with the regional center not taking appropiate action on Nick's behalf! I don't think you can imagine the frustration I go thru (yes, and the guilt) of knowing that I can't do what needs to be done for someone in the "system"! I have decided that no matter what I will do everything and anything necessary to help Nick. The last time he was "moved" to another home he was left penniless, on a list of horrendous medicines and NO personal possessions at all! He had some old worn out clothes and that was it! Excuse me? My son had a t.v., radio, tapes cd's,his beloved picture albums, lots of nice clothes and every single card or letter anyone had ever written to him. Gone....all gone.... No one knows where any of it is.....I am going to fight to sue the home for anything I can. This is how I can be effective for now so .if anyone out there would like to help Nick he would dearly love to hear from you. A pen-pal would be great, but hey, just a short note in the mail makes him feel ten feet tall. He also has the "neck" problem that a lot of ds people have and this limits his activities severly. He bowls every week, he holds down a job ( and has since he was 15!) he loves pictures and he loves people. He is a miracle in my life and I am doing what I can to better his life and mine. If anyone would like to help please feel free to e-mail me for info. We both live in California and sure could use some help and input. I think that even those people who do have relatives etc. (none of the families, dad included, have anything to do with Nick. No b'day cards, Christmas cards etc..) in a home might just be really good people and love their "special" person or child dearly and yet just not be in a position to take care of them in a good way, still deserve some consideration. I know that if anyone wrote to me and told me about their situation like mine my first thought would be how could I help them? Thank you very much. Debi

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Name: Connie
Date: Wednesday, September 15, 1999 at 16:57
Comments:

You can view DS growth charts at http://www.growthcharts.com. There is a link to this site from Dr. Len Leshin site at www.ds~health.com

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Name: Dora Ramos/Zapata, Texas
Date: Wednesday, September 15, 1999 at 16:11
Comments:

Can anybody give me information as to how to obtain a Down Syndrome growth chart? Please let me know on this message board. Thanks!! Para Mayra, Hola, muy pronto me co munico contigo. Adios

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Name: Michelle (Ciarra's Mom)
Email:jimichelkj@aol.com
Date: Tuesday, September 14, 1999 at 20:37
Comments:

OK! I am taking a DEEP breath, its hard to put my big dream up for everyone to see. I am hoping to have some help. I am writing a book, a kind of Q&A about DS, what its REALLY like to have a child with ds in your life. I am going to be writing up a list of questions about dealing with stuff, how people cope, I hope to get about 20 questions, and would like to have a large group of people to respond in 2-3 paragraphs, to each question. I will choose whoevers answer best suits the question, probably 4-5 seperate short answers for each question. I will use everyone who replies in one way or another, but not every person will answer every question. I hope to make this a book that shows the positive side of DS, but not sugar-coated. I want honest, thought-out answers. If the answer is not what you feel is positive, but its honestly how you feel, write it. I want people just starting out to know what its really like, the good and the bad. Mostly, I would like people to know that there are alot of us families out here, living every day with this thing and surviving, and that we adore these children no matter what happens. I hope you will let me know if you are interested. I am very serious about this project, but I need input from other families. I COULD talk about Ciarra for an entire book, Im sure, but I think for new parents starting out, its nice to know what its going to be like. If you are interested, email me and let me know. If you dont want to use your real names, thats fine. Right now, I am trying to compile a list of questions parents might ask about life with DS. If you have any suggestions, let me know. I appreciate your help. I promise you this will be a loving and thought provoking book. Thank you.

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Name: Theresa
Email:teve@mindspring.com
Date: Sunday, September 12, 1999 at 14:20
Comments:

To Anyone Interested in Adoption: There is an outstanding organization in Cincinnati, Ohio that has an exceptional and internationally known adoption program. Their name and address are as follows: Down Syndrome Association of Greater Cincinnati (or DSAGC); 1821 Summit Rd., Suite 102; Cincinnati, Ohio 45237. Their web address is www.DSAGC.com and their e-mail is DSAGC@AOL.com. The name of the woman in charge is Robin Steele. Their phone number is (513) 761-5400. Good luck to all! Theresa

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Name: Cindy
Email:scottcindy@jps.net
Date: Sunday, September 12, 1999 at 10:29
Comments:

TO All WHO CHAT: There seems to be another problem with the chat room guys, and I'm real sorry. Trying to figure out what's up, hopefully it will be fixed in time for tonights scheduled chat. Have a great Sunday! Cindy

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Name: marilyn
Email:warrenken@ftc-i.net
Date: Friday, September 10, 1999 at 08:56
Comments:

Just an up date on how Vinson's appointment with Dr. Smith his nero. surgeon went thur. 9th. they aren't doing surgery just yet. Dr. smith wants to check out with his colleagues on how to handle this problem. Vinsons 3rd and 4th vertebras are out of line he says he was born with this problem. He has to go back in Oct. to have another cat. scan and meet with Dr. Smith again. He said to do the surgery he would fuse the 3rd and 4th vertebras and put in a rod and then put in a bone between the space. He would be in a halo for 6 months. Please pray for the Doctors and Vinson.

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Name: mayra
Email:MDATIL@AOL.COM
Date: Friday, September 10, 1999 at 06:43
Comments:

PARA DORA,DORA MI NOMBRE ES MAYRA DATIL Y SOY NATURAL DE PUERTO RICO Y VIVO EN EL BRONX,NY ESPERO TU CONTESTA PRONTO PARA QUE HABLEMOS DE NUESTROS HIJOS.BYE MAYRA

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Name: Diane
Email:Lobomagill@AOL.com
Date: Thursday, September 9, 1999 at 23:23
Comments:

I love this new website. I live in Wyoming and work as a parent resource for parents. My son has mosaic down syndrome and is 24 yrs. old. I find it interesting that most of the parents that are on this website have younger children with ds. Guess I'll have to get the older parents moving!! There is not a Down Syndrome group in WY because we have such a small and rural population, that our parent groups include all disabilities. Keep up the good work of finding questions for you kids. That's what it takes.

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Name: Dora Ramos/Zapata, Tx.
Date: Thursday, September 9, 1999 at 15:43
Comments:

Para Mayra, No creas que no te voy a contestar, es que me estan tratando de ayudar con el E-Mail. Yo no habia usado E-Mail, es la primera vez. Estoy muy emocionada con tener te como amiga por internet. Le estaba platicando a mi esposo de ti y me pregunto que de donde eras. Le dije que se me habia olvidado preguntarte. Ya teniendo mi E-Mail platicamos mas en detalle de nuestros hijos. Hasta luego, te vuelvo a escribir manana.

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Name: Paula
Email:par3@gis.net
Date: Wednesday, September 8, 1999 at 19:27
Comments:

OOPS let me try again. I am looking for some encourgment for late walking. My son is 3 1/2 and shows little to no interest in walking. He has AFO's for his feet and they are suspose to help, but I havn't seen any real change. I would love to hear from someone whos child waled late like Alex. Or someone else facing the same issue. Thanks

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Name: Paula
Email:par3@gis.net
Date: Wednesday, September 8, 1999 at 19:22
Comments:

WALKING!!

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Name: MAYRA
Email:MDATIL@AOL.COM
Date: Wednesday, September 8, 1999 at 19:10
Comments:

PARA DORA RAMOS ZAPATA DE TX.HOLA DORA NO SABES LA ALEGRIA QUE ME DIO AL VER QUE ALGUIEN SI ME RESPONDIO Y CLARO QUE SI QUE QUIERO QUE SIGAMOS EN COMUNICACION.NO IMPORTA LO POQUITO QUE SEPAS EL ESPANOL NOS ENTENDEREMOS TE LO ASEGURO.GRACIAS POR CONTESTARME ESTABA ANCIOSA POR HABLAR CON ALGUIEN QUE TUVIERA FAMILIARES CON DS Y QUE HABLARA EN ESPANOL Y ES LO MAS DIFICIL QUE SE ME HA ECHO CONSEGUIR A ESA PERSONA PERO YA A DIOS GRACIA QUE TU ME CONTESTASTES ESPERO QUE ME VUELVAS A ESCRIBIR PARA PONERLOS DE ACUERDO Y LO MAS QUEDARNOS EN COMUNICACION MUCHAS GRACIAS DORA Y ESPERO QUE ME CONTESTES PRONTO CON MUCHO CARINO MAYRA

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Name: Cindy
Email:scottcindy@jps.net
Date: Wednesday, September 8, 1999 at 15:58
Comments:

Hi everyone! Just wanted to tell you all that Kaylee had her sneak preview for Kindergarten today and I am just in total shock! She is included in a regular classroom, the school has hired an aide for her and the teacher and the aide have were sent to a workshop on inclusion! They have already made a visual calander for her, and are going to use it for the entire class.! The teacher has been searching the web for information on DS and even seems happy to have Kaylee in her class!!! I am so relieved. I wish that all school districts were this supportive and welcoming to kids with DS...:) I know I have chatted with some of you and just wanted to let you know I'm not as worried as I was a few days ago! Thank God for a good teacher and aide and a school that really believes in making inclusion work!

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Name: Una
Email:tomwin@gofree.indigo.ie
Date: Wednesday, September 8, 1999 at 13:32
Comments:

Message to Charlene: I missed you on the chatline but read your comments re the young man learning reading. Most children with DS appear to learn reading best through flash cards. Make cards with the words which are contained in the book you are using. Start with three words and when he knows them, then another three, etc. Then ask him to find the word on the page of the book. When he knows all the flash cards on the first page, get him to read the page. And so on. I hope this works for you.

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Name: Karen
Email:kdjoslin@hotmail.com
Date: Wednesday, September 8, 1999 at 10:19
Comments:

I am looking for someone named Elya. My husband was going through his deleted messages last night and I saw a message to me with that name on it and I am afraid they e-mailed me and I never saw it. I don't want to be rude by not responding but he deleted it before I could get the address. Please respond again.

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Name: DORA RAMOS/ZAPATA, TX.
Date: Wednesday, September 8, 1999 at 09:24
Comments:

PARA MAYRA, EMAIL:MDATIL@AOL.COM. YO TAMBIEN TENGO UN NINO CON DS. MIJITO TIENE 8 ANOS. EL HA SIDO UNA GRAN ALEGRIA PARA NUESTRA FAMILIA. ME GUSTARIA MUCHO PLATICAR CONTIGO. YO HABLO Y ESCRIBO EL ESPANOL MUY MAL PERO ESTOY LISTA PARA PLATICAR. DE DONDE SOY YO HABLAMOS TEX-MEX Y EN REALIDAD SE OYE MUY MAL PERO COMO QUIERA. MI NINO SE LLAMA JOEY Y VA EN 3RD GRADO EN EL PROGRAMA DE SPECIAL ED. YO TAMPOCO TUVE CON QUIEN PLATICAR CUANDO NACIO MIJITO. SI TU ESTAS DE ACUERDO DEJAME MENSAJE AQUI Y YO TE DEJO MI EMAIL PARA PLATICAR MAS EN DETALLE

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Name: DORA RAMOS/ZAPATA, TX.
Date: Wednesday, September 8, 1999 at 09:16
Comments:

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Name: Cindy
Email:scottcindy@jps.net
Date: Monday, September 6, 1999 at 18:59
Comments:

TO UNA-so sorry about the chat! Something happened with the chat room and I couldn't get it to work. Was so enjoying our conversation. Please try mailing me the picture of Gemma! Cindy McWilliams 3911 SE Cedar Street Hillsboro, Oregon 97123

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Name: Lori
Email:LGard32@aol.com
Date: Monday, September 6, 1999 at 14:25
Comments:

I want to thank everyone who replied to my message about feeding textured foods. The solution I have found for my son is to thin out the Stage 3 Baby Food with some Stage 2 Baby Food(for example, stage 3 spaghetti with meatsauce and Stage 2 spaghetti with meatsauce). He is doing much better now with no spitting out of the food. I have also found positive reinforcement and a spoonful of fruit(his favorite thing) have helped greatly. Thank you again everyone!

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Name: mayra
Email:mdatil@aol.com
Date: Monday, September 6, 1999 at 00:39
Comments:

mi comentario es en espanol ya que no escribo en ingles pero lo entiendo,yo quisiera saber si hay personas que tengan familiares con down syndrome y hablen espanol yo tengo un nene con down syndrome y es mi orgullo el tiene 19 meses y es una chuleria siempre se esta riendo y bailando.yo quisiera que atravez de este mensaje alguien hispano me contestara ya que no tengo ni conosco a nadie con down syndrome.he comprado libros y tambien atravez del internet he consegido bastante informacion,pero me gustaria conocer a personas que tengan familiares con down syndrome y que hable espanol."muchas gracias"de todo corazon. mayra

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Name: mayra
Email:mdatil@aol.com
Date: Monday, September 6, 1999 at 00:39
Comments:

mi comentario es en espanol ya que no escribo en ingles pero lo entiendo,yo quisiera saber si hay personas que tengan familiares con down syndrome y hablen espanol yo tengo un nene con down syndrome y es mi orgullo el tiene 19 meses y es una chuleria siempre se esta riendo y bailando.yo quisiera que atravez de este mensaje alguien hispano me contestara ya que no tengo ni conosco a nadie con down syndrome.he comprado libros y tambien atravez del internet he consegido bastante informacion,pero me gustaria conocer a personas que tengan familiares con down syndrome y que hable espanol."muchas gracias"de todo corazon. mayra

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Name: Lori
Email:lori@cableone.net
Date: Sunday, September 5, 1999 at 21:33
Comments:

To XTRA: Yes, people with DS do age faster. So your sister entering menopause at 38 is possible. (It is also possible with any 38yr. old, really). Hopefully your family has a good OB that she is seeing. Menopause could be a little confusing to her, but hopefully she will adjust to it well. A really good book for your family to get is "Medical & Surgical Care for Children w. Down Syndrome" published by Woodbine House. It covers every topice you can think of & lists a lot of resources also.

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Name: Collene
Email:Trainrose@aol.com
Date: Sunday, September 5, 1999 at 18:31
Comments:

I am a parent who would like to adopt an infant girl with DS. I have two boys and one girl already, so a balance of hormones and energy seems appropriate. We had a child with DS for 4 years and she and the community were amazing. We would like to add to our blessings with another child with DS. We have a homestudy in place. Anyone with any directions for us would be wonderfully appreciated. Thank you, Collene and bunch

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Name: Sheri
Email:miguel1198@aol.com
Date: Sunday, September 5, 1999 at 13:51
Comments:

I am trying to find out some information on the vitamin called nutriven-d. Has anyone had any experience with it? I have a 9 month old baby with DS and my therapists has recommended the vitamin, but we cant find any info on it. I would appreciate any information on the subject.

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Name: Una
Date: Saturday, September 4, 1999 at 16:34
Comments:

Angela, Glad to hear Ryleigh is doing so well. I was chatting to you by email recently. My daughter used a little walker when she was learning to walk and I think it helped to strengthen her legs and gave her independence. I remember she would stop walking and just hold on with one hand to have a look around and then go off again. She walked unassisted at 18 months but from what you say Ryleigh will be walking before that.

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Name: Una
Date: Saturday, September 4, 1999 at 16:32
Comments:

Angela, Glad to hear Ryleigh is doing so well. I was chatting to you by email recently. My daughter used a little walker when she was learning to walk and I think it helped to strengthen her legs and gave her independence. I remember she would stop walking and just hold on with one hand to have a look around and then go off again. She walked unassisted at 18 months but from what you say Ryleigh will be walking before that.

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Name: Debi J. Willis
Email:Debiw3@webtv.net
Date: Saturday, September 4, 1999 at 15:57
Comments:

Has anyone out there had to try and deal with the "system" because their Downs Syndrome adult is in a group home and is not being treated fairly regarding medications, finances and or behavorial problems? My 19 year old son keeps getting shufflrd around to a new home every time he "acts out." He has learned how the caregivers react to his misbehavior and acts upon that from the start. They now have him on some drugs that are not beneficial to his well-being plus every home he goes to he ends up with less money and severe losses of his personal property. All I want for my son is a stable life yet I do not know how or who to contact so he can be helped. I am also looking for anyone who has advice on how to deal with his atlas-axis neck problem. Would surgery help or is there any type of neck brace that he can use so he will be able to join in more activities? A major part of his problem is that he is BORED and no-one seems to know what to do about it. I know I have rattled on and I apologize but if anyone ou there can help us we would be very grateful. We both live in Calif. Thank You Debi J. Willis Nick's mother

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Name: Angela Reid
Email:lareid@peoplescom.net
Date: Saturday, September 4, 1999 at 14:29
Comments:

My 10 month old daughter is learning to walk unassisted..she has been cruising furniture for about 2 months and has just started standing on her own for a minute or so..I unvested in a Teletubbie walker the kind she pushes and wlks behind not sit in..She is walking a little with this..I got it last night..I was just wondering if any parents used this with any of their kids and if the kids became dependant on the walker to walk. Thanks Angela/Tx (Ryleigh's Mom)

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Name: Joanne
Email:info@boatli.org
Date: Saturday, September 4, 1999 at 09:24
Comments:

I was wondering if anyone knows of our legal rights concerning an aide that may be working with our chile? My son has been assigned an aide for next year who I personally know is not patient, talks down to all children and who will do as little as possible. I have let the Director of Special Services know I am not happy with this choice, but I don't think he is going to do anything. Do I have any legal rights here?

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Name: Nicole Young
Email:nyoung6@aol.com
Date: Saturday, September 4, 1999 at 07:13
Comments:

This message is to Lori. I tried giving some foods with texture to my son too around ten months. It's a good age if their ready. I have three kids and none of them, even my two without DS wouldn't eat stage three food. It has too many textures at the same time and they seem to get confused. One of the first foods I tried was baby egg pastina. It's the little stars. He sucked on it and spit it out at first and then I'd have to give him something else after, but I kept it up until he eventually started to get used to it and started to keep it in his moouth. You can try other foods like scrambled eggs and other soft foods. Just stick to the one texture foods though. It takes some time. Kids with DS just seem to be a little more sensitive about textures than other kids, so it might take a little longer. Sometimes I would take a bite myself of the food I was giving him and having him watch how I chewed it and made all those yummy sounds of eating something good. It made him very curious. Some kids are more stubborn and wont try it if they don't want to try something new. You just have to keep trying new things to find out what can convince him/her to taste it. Let me know how you make out. Nicole

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Name: Donna
Date: Friday, September 3, 1999 at 09:09
Comments:

To XTRA regarding your 38 y/o sister with DS. There is information on the ARC (retarded citizens website) about DS and Aging..One theory about the genetic changes in DS is that there is an speeding up of the Aging Process-there are also some DS clinics that specialize in older adults with DS-I believe the University of Cincinnati is one good luck

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Name: Lisa
Email:lisagrossman@juno.com
Date: Thursday, September 2, 1999 at 19:51
Comments:

Hi, I have a 9 month old son with DS. And I would love to chat with other parents out there.

I'm a real proud mama. I didn't know I was having a child with DS until my son was two days old, plus he has a VSD, which is almost healed.

My son is doing great, he can sit all by himself, and has been rolling around since he was four months old. he's working on crawling, he can get up into position but doesn't go anywhere.

were having trouble with introducing textured food, he'll eat stage 3 vegis and fruit, but is having trouble with the meats. His nutristionist is driving me crazy about him noot wanting more textured food, she keeps saying he's going to miss the window of oportunity, but my son is not ready yet? What should I do? Help.

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Name: Dyanna
Email:brianddy@aol.com
Date: Thursday, September 2, 1999 at 12:41
Comments:

Lori G. I just wanted to let you know that you are not alone! My 8 month old is doing the same thing with his mealtime. Of course, the OT came out to see if she could help and Cory was a perfect angel for her! I don't have any suggestions, just some good ole' support. I am anxious to see how other parents deal with mealtime and texture and all that good messy stuff!

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Name: XTRA
Email:xtra_usa@yahoo.com
Date: Thursday, September 2, 1999 at 09:51
Comments:

Does anyone here knows how fast DS women age? I have a sister 38 y old and looks like she is entering menopause- her periods stopped. Could that be?

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Name: Denisse Cuervo Ginther
Email:denacu@hotmail.com
Date: Thursday, September 2, 1999 at 05:18
Comments:

I am mexican and know i'm in Mexicali, BC. I'm moving to San Diego and the truth is that i don't have any family or relatives that have DS. It all started when i took my niece to play with his friend, this boy was 11 years and i got to know him for a year he had DS but the thing is that he teach me a lot of things that i didn't knew, the way he lives every day amazes me, know he moved to another city. I will like to know if someone can help me and please say to me how can i help in any institution, i don't have lots of money but i know that with my support and the little things i know of DS children i could be helpfull in any institution or school, i don't want a job, i just want to be a voluntary that way i can learn from the people that is prepared, i hope someone could answer me, sincerelly, Thanks!

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Name: Judi
Email:judig2@yahoo.com
Date: Wednesday, September 1, 1999 at 21:54
Comments:

Hi! This is for Tammy,looking for a nanny. See if there is a nursing school near you. Contact them and see if they have somewhere you can place an "ad" or whatever. I live in Dallas and had my twins at Baylor Univ. Med. Center. The nursing school is in the hospital complex. My boys had a really long NICU stay and we made lots of friends with the staff. One of the nurses told me about the nursing school "babysitter list". Got my hands on a copy and got the name of the person who coordinated it every semester. Got some good babysitters. You may be able to do the same thing for a full-time nanny if they are a part-time student looking for work. Another thing you might try is try any other community college/university or whatever, especially ones that have "child development" programs. Again, you might luck out and find a part-time student willing to work for you. I know this probably won't work for you, but the local high school has a child development program and we called the head of the department and asked for some names of students who wanted to babysit. Our main babysitter came from this recommendation. She's great! Not only was she in this program, but she's volunteered alot for special olympics, etc. thru school. I've recently begun teaching Sam & Patrick sign language and she already knows that so that helps a lot! Good Luck!

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Name: Lori Gardiner
Email:LGard32@aol.com
Date: Wednesday, September 1, 1999 at 20:25
Comments:

Dear Tracie, I also read your comment about your younger daughter noticing the difference between her sibling and herself. I wanted to tell you about a pamphlet that my husband and I received from a world renowned Down Syndrome Specialist, Dr. Siegfried Pueschel, when he visited us in the hospital after our son Joshua, who has DS, was born. It is called "Chris...our brother" and was written by Siegfried, Jr., Pamela, and Jeanette Pueschel. I'm not sure if you can find it in your local DS Agency's Library but if not you can e-mail me and I could send you a copy. This might help explain to your daughter about DS and what a child with DS can accomplish. It is also great reading for adults! I hope this helps. E-mail me anytime if you have any questions.

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Name: Lori Gardiner
Email:LGard32@aol.com
Date: Wednesday, September 1, 1999 at 20:16
Comments:

Tracie, I also read your note about your younger child noticing the difference between her sibling and herself. I would like to tell you about a pamphlet I received from a world renowned Down Syndrome Specialist, Dr. Siegfried Pueschel, who gave us the pamphlet while visiting us in the hospital after the birth of our son Joshua, who was DS. It is called "Chris...our brother" and is written by Dr. Pueschel's children Siegfried, Jr., Pamela, and Jeanette Pueschel about their brother Chris who has Down Syndrome. I don't know if you can find it at your local DS Agencies Library but if you can't let me know and I can mail you a copy. I hope this might help explain to your daughter about DS and what children with DS can accomplish. It is also great for adults to read. Please e-mail me if you have any questions.

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Name: Tammy Stein-Sandbo
Email:tammy.m.stein-sandbo.@intel.com
Date: Wednesday, September 1, 1999 at 18:53
Comments:

Hello Everyone: I have an 11-month-old daughter (Raeana) who has Down syndrome. I am a single mom and have to work 5 day per week to support my family. My question is... does anyone know of any resources that they can refer me to, which will help me find a nanny. I need a nanny who has training in special needs (physical therapy techniques, speech therapy, etc.) and who will come to my home daily to provide care. I have had two nannies (both 18 years of age) within the last 7 months but neither understood the full scope of the responsibilities that I was asking for, even though I completely and clearly stated what the responsibilities would be in writing before I hired them. I am not a rich executive and I have contacted the Alta California State Regional center to find out about subsidized day care funds to allow me to afford to hire a more qualified individual to help care for Raeana. Again my question is… are there any Nanny Agencies that support the Northern California (Sacramento) area with nannies who have special needs training (preferably experience working with Down Syndrome children). I am working with one local nanny agency but none of the 7 applicants that were currently available have any special needs training. Any help or resource that anyone could provide would be GREATLY appreciated. I just want to find the right person who understands the challenges facing Raeana and who will help her reach her highest potential (whatever that may be). I am currently using temporary care at a day care home and I know that the constant changes are NOT a good thing for Raeana or my other two girls. Thank you in advance for any knowledge you can share with me. Tammy

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Name: Una
Email:tomwin@gofree.indigo.ie
Date: Wednesday, September 1, 1999 at 15:18
Comments:

Just in case anyone was trying to email me and had message returned. My email username is changed to tomwin@gofree.indigo.ie.

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Name: Trish
Date: Wednesday, September 1, 1999 at 08:04
Comments:

Tracie, I read you comment regarding your younger child noticing the differences between herself and her sister. There is a great children's book called, "Our Brother has Down Syndrome". It is a family-written book about two girls who have a little brother w/DS. I particularly liked the book because I have two daughters and my son (the youngest) has DS. I have used this book to read to the girls' classes (they are going into 1st and 3rd grade this year). The kids in the classes see Michael a lot because I am at the school often. The book explains what makes "Jai" (the little boy w/DS in the book) different, but totally emphasizes how much more ALIKE Jai is, than different. As I was reading the book to the class, I made two columns on the blackboard: one for ways he is different and one for ways he is the same. The "same" column was very long and the "different" column only had two entries! The kids really enjoyed it and it makes my girls feel good about their brother. I can't find my copy of the book at the minute to give you more info, but I've found it in book stores. Good luck and tell me what you think about it.

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Name: Stephanie
Email:stephmark@worldnet.att.net
Date: Tuesday, August 31, 1999 at 21:22
Comments:

Dear John, We have a 10 month old daughter with d/s. We also have a 5 year old son and a 3 year old son. We live in Middletown, New Jersey and my husband commutes to NYC. We go thru a great agency, Family Resource Associates, in Shrewsbury, NJ. They provide all of our daughters therapies and they actually have a physical location where they provide, for a nominal fee, group therapy (my baby started group at 6 months old), support groups, family fun days, sibling support groups, and a host of other "onsite" activities and support services. In NJ, when your child is 3 years old they can go to the "handicapped preschool program", which I hear is great in Middletown. When ready for Kindergarten, Middletown does inclusion. I think that if you don't want inclusion, you do have other options (based on what other people have told me). I know many people who are in the school system with d/s and their parents are all very happy! Good luck to you! Stephanie

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Name: Kathy
Email:pjskats@earthlink.net
Date: Tuesday, August 31, 1999 at 19:06
Comments:

Hi Everyone. I havent been online for awhile but some of you know me from the chatroom, my DS daughter is Ashley who is 8 years old and I also have another daughter, Jamie who is 6. Anyways, I live in the Detroit area and would like to tell all of you about my support group's upcoming statewide conference on Down syndrome in October. It is being held on Saturday, October 30, 1999 at the VanDyke Park Suite Hotel and Conference Center in Warren, Michigan. The cost is $45 for one person or $75 per couple and it includes lunch, 2 snack & refreshments, dinner w/entertainment and a choice of up to 5 conference sessions (you can choose 5 from a list of 25). A sampling of the sessions are: toilet training, massage therapy, child development, music therapy, just to name a few. And for parents with older DS children, we will be having sessions dealing with sexuality, job coaching and independent living, just to name a few. We will be having a keynote speaker during the dinner with entertainment afterwards. Limited hotel rooms have been discounted specially for this conference for out of towners for $99 per night. If you would like a brochure and registration form mailed to you, please email me with your address and I will get one to you as soon as I can. I hope to have them printed by September 6th or 7th. Thanks and I hope to see some of you there!! Kathy

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Name: Tracie
Email:tjkjkids@aol.com
Date: Tuesday, August 31, 1999 at 12:43
Comments:

Our first born child has DS. Our second child was born 18months later and now at 6 and 7 we are seeing some issues with the younger girl about having an older sibling with DS. Has anyone else out there dealt with this. Our youngest is saying things like "Why doesn't she have to dress herself, she is the older sister" Why does she always get to go to the doctor" Do you love her more because she has DS" etc. We try and do special things with our 6 year old that our 7 year old can't do yet but this doesn't seem to help. ANY SUGGESTIONS??

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Name: Judi
Email:judig2@yahoo.com
Date: Tuesday, August 31, 1999 at 12:17
Comments:

This message is for Dyanna: Try this - take a plastic laundry basket and put your child in the basket, in the bathtub! I read this tip at www.specialchild.com. The laundry basket helps keep the child in a sitting position with a little support (you may have to roll up some small towels and place on the sides to help prop). The water can flow thru the holes in the basket and allow the child to "play" in the water and splash, etc. Good luck!

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Name: Cindy
Email:scottcindy@jps.net
Date: Tuesday, August 31, 1999 at 11:27
Comments:

TO Ann in BC, Could you e-mail me the information on your upcoming conference (is it a medical info conference regarding people with DS?) in Canada? We would be very interested to go to that..I just read your conversation in the chat room a couple days ago when I was archiving. Thanks for any help you can give us! :) Hi Larissa!

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Name: Lori Gardiner
Email:LGard32@aol.com
Date: Tuesday, August 31, 1999 at 08:55
Comments:

I have a 10 month old son with DS. I have been trying to get my son to start eating some soft table foods. I decided to try Stage 3 Baby Food to get him used to the texture and consistency but I am not having very good luck. Joshua used to love to eat but now mealtime has become a chore. He cries and spits out the chunks. It is quite messy! If anyone has any ideas or tips please let me know. Thanks, Lori

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Name: Neil
Email:neil@mhs.mps.k12.vt.us
Date: Monday, August 30, 1999 at 13:24
Comments:

I am trying to reach Una regarding setting up an e-mail pen pal relationship between her daughter and a student at my High School. I tried to respond to her e-mail message, but the e-mail address did not work. Please try to reach me again. neil@mhs.mps.k12.vt.us Thanks again, Neil

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Name: Holly Giglio
Email:hgiglio@tc3net.com
Date: Sunday, August 29, 1999 at 20:23
Comments:

Jarrod, Congratulations on your baby boy. Our baby boy, Jake, will be 5 months old on the 14th. We were not aware that he had DS until he was born. We also have a 2 year old nephew who has DS. When my sister in law learned about the baby, I read as much as possible so that I would know what to expect. That knowledge has helped us so much. At first you are overwhelmed at what the diagnosis means. Not just to your child but to life as you know it. Knowledge is power and key to taking on the challeges that you may face. Our son and nephew were born healthy. They are both a wonderful part of our families. We treat them just like our other children. Our families and friends have been supportive and understanding. They also have tried to learn as much as possible. Our experience at this point has been a very positive one but I think most of that is because we are positive. The book "Babies with Down Syndrom, A new parents guide" has lots of info. Also, I loved the Gene Stallings book "Another Season." Reading about what he went through with their son, made me realize just how lucky we are in this day and age. So much has changed and so much more is expected of people with DS. Enjoy this new experience if it happens to you. Take one day at a time, and take time for yourselves. God Bless!

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Name: Holly Giglio
Email:hgiglio@tc3net.com
Date: Sunday, August 29, 1999 at 20:23
Comments:

Jarrod, Congratulations on your baby boy. Our baby boy, Jake, will be 5 months old on the 14th. We were not aware that he had DS until he was born. We also have a 2 year old nephew who has DS. When my sister in law learned about the baby, I read as much as possible so that I would know what to expect. That knowledge has helped us so much. At first you are overwhelmed at what the diagnosis means. Not just to your child but to life as you know it. Knowledge is power and key to taking on the challeges that you may face. Our son and nephew were born healthy. They are both a wonderful part of our families. We treat them just like our other children. Our families and friends have been supportive and understanding. They also have tried to learn as much as possible. Our experience at this point has been a very positive one but I think most of that is because we are positive. The book "Babies with Down Syndrom, A new parents guide" has lots of info. Also, I loved the Gene Stallings book "Another Season." Reading about what he went through with their son, made me realize just how lucky we are in this day and age. So much has changed and so much more is expected of people with DS. Enjoy this new experience if it happens to you. Take one day at a time, and take time for yourselves. God Bless!

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Name: Dyanna Jones
Email:brianddy@aol.com
Date: Sunday, August 29, 1999 at 09:42
Comments:

Thanks to all for the great bath tub advice. Jarrod Cooper-congratulations on your little baby! The first two things that came to mind when I read your comment was "Jarrod came to the best website in the universe!" (My son was born in January and we did not know he had DS. This website has been a great source of encouragement and education to me.) The second thing that came to mind was a bible verse in Proverbs. "Lean not on your own understanding, but in all thy ways ackowledge Him (Christ) and He shall direct all thy paths." Bless you and your family as you continue on in this miracle of life! Dyanna

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Name: Jarrod Cooper
Email:icecop1@aol.com
Date: Saturday, August 28, 1999 at 19:42
Comments:

After having the 20 week sonogram and anxiously awaiting the news from the technician if our child would be a boy or a girl. We were told that indeed we were having a boy, but also that our child had a 1 in 10 chance of being born with Down Syndrome. This was based on the physical characteristics found in the ultrasound and the results of a triple test. My wife and I decided not to have an amniocentisis performed due to the high risk of miscarriage. This was all last week. So far we are comming to grips with the reality and are trying to learn as much as possible about DS. We want to be as informed and as prepared as possible for the arrival of our son with or without DS. Any direction or information would be greatly appreciated. Thank you, Jarrod Cooper (a proud and loving father-to-be, no matter what)

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Name: Diane
Date: Saturday, August 28, 1999 at 16:28
Comments:

I heard good thinga about this clinic and I intend to make an appt very soon. Thanks for the URL.

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Name: MichelleMc
Date: Saturday, August 28, 1999 at 13:09
Comments:

JOHN: I'm in CA, and don't have a very good grip on the tri-state area, is New York a part of that area? I do know of a great organization called Assoc for Children with Down Syndrome in Bellmore NY. Here is a link to their website www.acds.org Even if they are not in the area you referred to, I'll betcha they can give you some good suggestions.

Dyanna I hope this doesn't sound like a wierd suggestion and I know you can't do it all the time... but your baby is still very young, I'm sure it wouldn't be inappropriate to climb in the tub with him and support him while he plays. Of course, it sure is nice to be able to clean the bathroom or read a magazine while your baby happily splashes away for a half hour. I think I've seen some really supportive bath seats... let me surf around and see if I can find a link for you.

Finally, there was someone last month asking about suggestions for working at home, so that she could stay home with her baby. I'm sorry I can't remember your name, and shortly after your post, this program crashed and I lost weeks worth of posts on this page. ANYWAY... I have found a good website called WAHM (Work at Home Moms)there are lots of great discussion boards there. It might be a way for you to see what other people are doing at home... and get a peek at their success and frustrations. Here's the web address: www.wahm.com Let me know if you find anything of interest!

Michelle

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Name: Greg Fillman
Email:gregf24@aol.com
Date: Saturday, August 28, 1999 at 11:06
Comments:

Hi to all, I have been developing a new down syndrome site for the Eastern Pennsylvania Down Syndrome Center. Witch is now online. If you would please view the site and send e-mail to EPDSC@ptd.net We would greatly appreciate your comments on the site Also there are so great down syndrome links on the site The URL is http://members.aol.com/epadsc/epdscp1.html Thanks so much for your time on this matter. Sincerly Greg Fillman

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Name: Diane
Date: Saturday, August 28, 1999 at 08:21
Comments:

Dyanna, Have you tried one of those bath seats? You can always fold up a towel to help prop the baby up....

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Name: Dyanna Jones
Email:brianddy@aol.com
Date: Friday, August 27, 1999 at 22:56
Comments:

Hey everyone. Can anyone please give me some tips on a "fun" bathtime for my 8 month old with DS? He is growing out of the baby tub. However, he still cannot set up and he can't hold his head up for very long. I hate to just get him in and out while holding him with my hands when I think he would really enjoy playing in the water. I have no creative bones in me so I need help!! Thanks, Dyanna. PS. Jenny, I will try to keep up with your e-mail addresses. Thanks for always giving an update.

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Name: John McGuire
Email:john.mcguire1@worldnet.att.net
Date: Thursday, August 26, 1999 at 19:39
Comments:

My wife and I have a six-month old daughter with Down Syndrome and live/work in the New York City area. We are planning to move out of the city to the suburbs in the tri-state area within the next two years. Our goal is to have our daughter, Annie, included in a traditional classroom environment when she is ready for school. Wonder if any parents from the tri-state area can recommend a specific school district to live in that is supportive of inclusion.

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Name: John McGuire
Email:john.mcguire1@worldnet.att.net
Date: Thursday, August 26, 1999 at 19:38
Comments:

My wife and I have a six-month old daughter with Down Syndrome and live/work in the New York City area. We are planning to move out of the city to the suburbs in the tri-state area within the next two years. Our goal is to have our daughter, Annie, included in a traditional classroom environment when she is ready for school. Wonder if any parents from the tri-state area can recommend a specific school district to live in that is supportive of inclusion.

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Name: MELISSA DUPONT
Email:MJD2@USWEST.NET
Date: Tuesday, August 24, 1999 at 22:31
Comments:

hey michelle if you get this message email me there was a user in the room today by the name of (angel of death) i dont think he/she belonged there but i do think that it was inapropriate for her to use the language that she did . she was in there at 13:37:12 today. this evening just thought you would like to know Melissa

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Name: MELISSA DUPONT
Email:MJD2@USWEST.NET
Date: Tuesday, August 24, 1999 at 22:19
Comments:

IM SO SORRY EVERYONE I LOST ALL OF MY FRIENDS EMAIL ADDRESSES IF YOU ALL CAN EMAIL ME AGAIN WITH THEM I WOULD REALLY APPRECIATTE IT... I NEED EARLENES, TERRI ROGERS, MARY, AILAY LORI DORCHESTERS, CANDY'S, MICHELLES, LESLIE, LIZ'S DIANE FERKO'S AND MANY MORE... IM SORRY BUT MY PC TOOK A HUGE DUMP ON ME. AND WE JUST GOT IT FIXED.. THANK YOU .

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Name: Tracie
Email:tjkjkids@aol.com
Date: Tuesday, August 24, 1999 at 22:13
Comments:

I am beginning to wonder if my 8 year old daughters with DS self stimulation, and behavior might be sign of Autism that is associated with DS. Does anyone have any info. Thanks!!

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Name: Tracie
Email:tjkjkids@aol.com
Date: Tuesday, August 24, 1999 at 22:11
Comments:

I have an 8 year old daughter with DS and she behaves wonderfully at home and at summer camp, but at school, they can't seem to get her to behave. She spits, which she never does at home. She has an aide with her in reg. ed but for some reason, she still has issues. Any ideas??

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Name: Samantha
Email:petshs@dshs.wa.gov
Date: Monday, August 23, 1999 at 12:37
Comments:

Please help?!?! I am a case manager for childrenwith disabilities. I have a family that is looking for clothing that is made for individuals with DS. I remember viewing a catalog about a year ago...I do not have it anymore and cannot remember the name of the company. Does anyone have information they could share? This family is not on the "net" so I am facilitating for them. Please e-mail. THANK-YOU!!

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Name: Theresa
Date: Friday, August 20, 1999 at 02:56
Comments:

Thanks Jenny! I'll update my address book. And I'll send you an e-mail sometime this weekend. Talk to you later!

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Name: Mandy
Email:www.achammock@yahoo.com
Date: Thursday, August 19, 1999 at 19:17
Comments:

In need of info about hearing impairments and thier relationship to DS. If you know of any info or have any suggestions where i can find info please E-Mail.

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Name: Mandy
Email:www.achammock@yahoo.com
Date: Thursday, August 19, 1999 at 19:17
Comments:

In need of info about hearing impairments and thier relationship to DS. If you know of any info or have any suggestions where i can find info please E-Mail.

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Name: Gretchen
Email:Gretch352@aol.com
Date: Thursday, August 19, 1999 at 08:33
Comments:

Tracie I helped my daughter get past this period by tapping out the words on her leg as I said them. Then told her it was her turn. After a while the rhythm helped her see there were 3 parts to the sentence instead of two.

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Name: Trish
Date: Thursday, August 19, 1999 at 08:18
Comments:

Tracy, He's playing you!!! All of my kids used to hate bedtime, especially Michael, my 4 year old w/DS. You have to lay down the law that bedtime is NOT negotiable. After a couple of heart-wrenching nights of crying, etc., he'll realize that you are serious about bedtime and he'll stop crying. It is VERY hard to listen to your child cry, but if you give in, it will NEVER stop! Trust me; been there, done that. Good luck!!!

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Name: tracie
Email:tlbjkl@aol.com
Date: Tuesday, August 17, 1999 at 22:44
Comments:

Help! it is 11:41pm and 3 year old jude is still awake and crying to stay up! we have tried everything! we would eliminate his nap in the after noon but he falls alseep around 3 if we don't put him down and we can't wake him until he has slept about 1 1/2 hours! he is totally conked out!! he only gets about 9 hours of sleep at night and his nap. any thoughts? I am so tired!!!!

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Name: jenny
Email:lbristow99@aol.com
Date: Tuesday, August 17, 1999 at 19:39
Comments:

yes, my husband changed my email again. This time I have threatened him about making anymore changes. I am sorry. I just read your message, I will try to email you later.

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Name: Nicole
Email:nyoung6@aol.com
Date: Tuesday, August 17, 1999 at 13:38
Comments:

Julie, I too posted a comment in the forum. If you have any questions, feel free to e-mail me any time. I'd love to help! Nicole

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Name: Diane
Date: Tuesday, August 17, 1999 at 10:57
Comments:

Julie, I posted a reply in the Forum...

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Name: Julie
Email:jaj@northnet.net
Date: Tuesday, August 17, 1999 at 06:04
Comments:

I recently submitted a question in the forums but "I guess" no one had any ideas for me. My daughter is 10 mos. with DS and I am trying to get her from her bottle to use a sippy cup. She held her own bottle so that isnt a problem, I am just not sure how to get her to catch on to the concept. Any suggestions would be appreciated.

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Name: Lisette
Email:lisette.frigo@bigpond.com
Date: Sunday, August 15, 1999 at 20:25
Comments:

This message is for Linda (Trinity's mother). A breastfeeding counsellor tried emailing you with some suggestions but her email did not get through. Is the email address you gave on this message board correct? Hope everything's OK with you and Trinity. Lisette

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Name: Paula
Email:par3@gis.net
Date: Sunday, August 15, 1999 at 15:45
Comments:

I have a calendar called "Down Right Beautiful" and it had some very beuatiful children in it. I beleive I got it from the Woodbine Company, they also put out great books. I also think you can get one from the National Down Syndrome Society. Maybe these numbers would help. 1-800-221-4602 or 1-800-843-7323.

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Name: Linda (Erics Mom)
Date: Sunday, August 15, 1999 at 11:11
Comments:

Cindy, I have sent you an email (Sunday). let me know if you don't receive it. Maybe we had a problem with our servers , so emails didn't get through? I'm so new to the computer. Warm Regards, Linda

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Name: Theresa
Date: Sunday, August 15, 1999 at 00:47
Comments:

To Jenny (Lbris99)

Did you change e-mail addresses again? I sent you some messages this weekend and they came back to me from mailer daemon saying the address was incorrect. Send me an e-mail with your address if it's new and I'll re-send what I sent you. Thanks! Theresa

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Name: Cindy
Email:vitog@jnlk.com
Date: Saturday, August 14, 1999 at 19:07
Comments:

Linda, Hi! Thank you for the information. I e-mailed you back but didn't hear anything again so I thought you did not want to talk anymore. Cindyg

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Name: CATRIONA SILLARS
Date: Saturday, August 14, 1999 at 17:21
Comments:

I would like to thank all the people who gave me there e-mail addresses.I hope you got your replies.Its great to hear from you. I would also like to ask anyone living in the U.K who uses the chat room if they fancy arranging a certain time at the weekend for a chat.Any time myself or my daughter go there unfortunately we seem to miss people due to the time difference.

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Name: Erin Mc
Email:mcginnis@email.unc.edu
Date: Saturday, August 14, 1999 at 14:27
Comments:

Hello everyone- my family is interested in adopting a child with down syndrome. Yesterday, the 13th, my mother and I were watching "Ophra" and a woman spoke of an adoption agency called "A Child Exchange" I think. Does anyone know any more about this agency or another one that would be good for a family on the east coast to try? thanks erin

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Name: Linda (Erics Mom)
Date: Saturday, August 14, 1999 at 10:18
Comments:

Cindy, Dr Caputo's Number is : Roseland- 228-3111 (I think the area code has changed from 201 to ....). We moved during the area code changes, so I'm not sure of the new one for that area. Newark: 485-3353. (same, I'm not sure of the area code). Cindy, I have sent you several email and responses to your emails. Have you been receiving them (as they had Caputo's #'s in them)? Linda

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Name: Cindy
Email:vitog@jnlk.com
Date: Friday, August 13, 1999 at 19:56
Comments:

Hi! Someone had given me the name of an eye dr. who is in newark, and also in Roseland, NJ> I have looked up the name to get his phone number but i can't find it. Is he in a particular office which has another name besides his? The eye dr. is DR. Anthony Caputo. Would you please get back to me about his phone number. Thank you, Cindy

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Name: Kristie
Email:iwanttotalk@hotmail.com
Date: Friday, August 13, 1999 at 10:09
Comments:

To Mary, and those of you looking for specific information on a certain topic!

Check out the new UNOMAS FORUMS! There are specific topics for different concerns. It is a great format, and it's something that Michelle has been working on for a while to get going. Take a look by clicking on the FORUMS link!

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Name: Gabby
Email:gcook21@aol.com
Date: Thursday, August 12, 1999 at 20:59
Comments:

Hi, this year we are starting a VIP program in our AYSO (soccer region). We are located in Southern Arizona. I just wanted to let you know, if you are intested in your children playing soccer AYSO has a great program, and if you speak with the people in your area, maybe you can get a VIP program going in your region. If you have any questions e-mail me and let me know. I'll see what I can do to help.

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Name: Mary Alice Malott
Email:malott@one.net
Date: Thursday, August 12, 1999 at 14:57
Comments:

Ihave a 4yr old daughter with DS! I am looking for toilet training support information or what ever some other parents can offer.

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Name: Gina Premont
Email:erikpremont@earthlink.net
Date: Thursday, August 12, 1999 at 12:47
Comments:

The one calendar that no one with a child with D.S. should be without is "Beautiful Faces" It is the most beautiful tribute to children with D.S. I 've ever seen.Hang one at work and one at home to promote awareness and show the world just how beautiful the faces of Down Syndrome are.Their e-mail is www.bandofangels.com and phone is 1(800)963-2237

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Name: Judi
Email:judi.grossman@gsa.gov
Date: Thursday, August 12, 1999 at 11:32
Comments:

Hi! This is for Julie, who is looking for a calendar. I belong to the Dallas Down Syndrome Guild and we put out a calendar as a fund raiser. It is called "Field of Dreams". I am one of the people selling our calendar and will be getting my shipment today or tomorrow. I can't recall the price off the top of my head (think it's $15.00 which includes mailing). If you are interested, please e:mail me and I'll set you up! Judi

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Name: julie
Email:sjhauser@jps.net
Date: Thursday, August 12, 1999 at 10:01
Comments:

I was just wondering if anyone has seen a calander featuring DS kids. A friend of mine claims she saw one, but can't remember where. Any clues?

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Name: Roulain
Email:sunshine@globalcompinc.com
Date: Wednesday, August 11, 1999 at 18:38
Comments:

I am 29 years old and the mother of 3 children,two of which have DS. These are my biolgical children. I wanted to know if anyone else has had 2 or more children with DS or do you know of anyone? HELP!!!!!!

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Name: Bonnie DeVito
Email:devitb@aol.com
Date: Wednesday, August 11, 1999 at 10:19
Comments:

Roulain, I know of one family where one child with DS is biological and one is adopted. I also met a family this weekend in Pittsburgh with twins both have DS. I have twins also, one with DS and one w/o. I was told that twins born both with DS is quite rare. However, I was told that having a second child with DS is 1 in 100. I am sure someone here knows of another family with a similiar situation. Do you belong to any of the DS lists. They reach many people and someone there may have two biological children with DS on at leasdt know of a family. If you are not subscribed I can post a message for you and maybe get you hooked up with another mom and dad. Email me privately if you wish.

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Name: T Mom
Date: Tuesday, August 10, 1999 at 23:48
Comments:

Does anyone have any information on the "Buddy Walk" sponsored by Down Syndrome Association of Los Angeles and PROUD? I know it is in October and saw it on the calender but would like more info or a website link to it.

Thanks!

T

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Name: Roulain Harrell
Email:sunshine@globalcompinc.com
Date: Tuesday, August 10, 1999 at 21:29
Comments:

I am a 30 year old mother of 3. One ten year old daughter, one eight year old daughter with DS, and a seven month old son with DS. These are my biological children and I am expecting again in FEB. I want to know if there is anyone else out there that has had two or more children with DS. or even if you know of anyone???????

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Name: Tracie
Email:tlbjkl@aol.com
Date: Tuesday, August 10, 1999 at 20:09
Comments:

Has anyone had any luck in moving from talking in two word sentences to three word sentences. Our son seems to be stuck! Thank you.

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Name: Diane
Email:drf218@earthlink.net
Date: Tuesday, August 10, 1999 at 14:25
Comments:

To Mel, my son Nichoals has myoclonic seizures which are kinda the same. Email me if you'd like. Nick is 29 months and was diagnosed in Feb.

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Name: ronald
Date: Tuesday, August 10, 1999 at 01:48
Comments:

hey deborah I have the same problem only It's not my son it's me, haha just a little joke. But that does pose a problem so I say just find someone to help trim down that inseam so they'll fit the boy.

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Name: Cindy
Email:scottcindy@jps.net
Date: Monday, August 9, 1999 at 23:00
Comments:

TO NEAL---Saw your name in the chat room and your statement about nobody talking to you. Just wanted you to know that if people don't exit correctly then their name stays in the room even though they aren't in there. So, there was probabley nobody there at the time. Please try again! Scheduled chats are on Wed and Sunday nights at 6 pm, but we all stop by whenever we get a chance! Just say hello and remember to hit refresh to see peoples comments...Cindy

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Name: jenny
Email:lbris99
Date: Monday, August 9, 1999 at 20:28
Comments:

Hey, I just wanted to brag. My Abigael is not only eating baby food easier now, but she is also taking a bottle !!!!! She weighs in at 14lbs now and 25 inches. Just wanted to be a proud mama!!!

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Name: ellbee
Email:lindab@tznet.com
Date: Monday, August 9, 1999 at 20:18
Comments:

I agree with Ron - I have a 32 year old DS son and I find it interesting to read about you young parents just entering into what I have gone through years ago (without the support or knowledge that's available to you today). I never regretted a day of it. If I can help any of you, please let me know.

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Name: deborah
Email:deblove5@aol.com
Date: Monday, August 9, 1999 at 18:32
Comments:

I am looking for elastic waist boys pants for a husky boy, waist 31, inseam 22. Any ideas? Thanks

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