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This is not a problem at all, just a little Christmas dilelmna. My son Drew is 20 years old and we bought him a Nintendo 64 and some games to replace his old Super Nintendo for Christmas. I have had quite a few people tell me that the Sony Playstation is much better and that I should get that. I understand that the games are on CD rather than the cassette type thing that Nintendo has. I also saw an attachment for the Playstation that you can buy that has a steering wheel sytem with gas and brake pedals for the racing games. What I need to know if any of you have teens who have had experience with these two sytems and how difficult the Playstation is. Drew is quite adept at his old Nintendo and I just don't want to get something that may be too hard but the Playstation sounds pretty neat. (really it's for me) Hope this isn't too trivial for this website but I thought some of you with other kids might have a little better insight than most. When asked about degree of difficulty of course most teens say "its really easy" Yeah, I've heard that story before. Anyhow, any help would really be appreciated.
Hi Linda, How is your sister doing? I understand how upsetting the news must have been for her. She seems to be going through the same sort of shock and grief that many of us faced at the birth of our children. I guess my advice to you would be to give her some time to mourn the loss of the child she expected to have. In my opinion, there is nothing wrong with that. It is a shock. When my son was born, sometimes I felt like I was almost putting on a "cheerful" act for all those around me. To keep them from feeling sad; to keep them from feeling sorry for me. I cried for months about it. I really don't think that is a sign of non-acceptance. It takes time. I guess I would suggest that maybe you print out the "Your Story" page on this site. That might help your sister see that her feelings right now are very understandable and normal. It might also give her a peek at the future with her child to see how much joy and laughter our babies came to bring. Do you know what I mean? I say, let her grieve a little if she needs to, and give her time to adjust to the news. Being pregnant is usually so filled with anticipation and excitement. It is quite a shock, at first, when it suddenly becomes just the opposite. Just my two cents.. hope I don't sound too preachy.
Hi Mary, I have the chatroom set up to periodically "purge" the dialog whenever the room is dormant. I suspected that people might get tired of reading thirty "Anyone here?" messages. For any comments that you want to be more permanent than a day or so, I suggest you add them to this page or to the Threaded Bulletin Board. If you ever post something that you later want deleted, you can always email me and ask me to delete or change it. I've purchased a new chatroom program that should be faster and easier than the one I have, but for some reason, I just can't get them to install the darn thing! Stay tuned!
Michelle, I left a message on the chat line the other day (Thursday 26) along with my email address, someone was needing some information about DS. When I checked back today, my message was not on. Can you tell me what went wrong.
Hi:This is my first time at this site, I have an 8 year old son with DS, he is in 2nd grade and fully included, I am currently seeking options to the general ed. report cards and was hoping to find any suggestions from parents or educators. Thanks
My sister, who is due to give birth in about 4 months, found out that the baby has DS and a serious heart problem. She is a nurse, however she is having great difficulty with this. She has five other children, all boys and we found out this one is a girl. I am trying to locate some inspirational information for her. She wont talk about it with me which i understand, but i would like to send her some information that she may not have. She has medical information, what I would like to found out if there is a book with maybe the "emotional side" to having a child with DS. Thank you for any information you can give me. linda
Hi! I am an undergraduate student and I am writing a paper for my psychology class about Down Syndrome. If you can answer any of thesequestions for me, I would really appreciate it!Which doctors and specialists does a child with Down Syndrome usuallysee for services? What kind of adjustments do families of children with DownSyndrome make?Finally, can you recommend any up-to-date resources? I willbe going to graduate school next year in genetics and I amvery interested in studying Down Syndrome.Thank you very much!!!
Ihave a 4 1/2 year old little girl with DS, and she just recently had hip surgery for hip dysplasia-she was dislocating her hips quite easily. Just wondering if anyone else has gone through this? She is doing quite well now. I understand this is a fairly rare occurance with DS. Would love to hear from someone about this!!!!
this web site is great and very educational!!!!!!!!!!!!
Ric, I agree with you about children with or without disabilites are gifts from God and they are also a true blessing. I had an amniocentesis done when I was two months pregnant and I'm glad I did. The months that followed gave me and my family the time we needed to prepare ourselves for what ever God was sending our way. Arnold is the joy of our lives and we are truly the lucky ones.
I have some questions about Down syndrome and I hope that you could answer them. I have noticed that 'Brushfield spots' is one of the symptoms associated with it. Does it occur among all races (spots)? What is the eye color of the child known to you? Does the child have brushfiled spots?I think 'Brushfield spots' occur among only those children who have blue eyes regardless of having Down Syndrome. For example, children who have Down syndrome those are not Caucasian, hardly have 'Brushfield Spots'. It is probable that 'Brushfield spots' could only be found among the whitesspecifically blue eye children who have Down Syndrome. Those spots are quite common among the people who have blue eyes. Thanks for your answer.
Hi Diane, The chatroom seems to be a really popular part of the site.. but, yes, a lot of people have complained about the way it functions. Just tonight, I ordered a new chat program that I think will be much easier. I appreciate the feedback on this. The new chat should be in place this week; and it really helps me to hear what does and does not work for Uno Mas visitors. Please check back in a few days, try the new chat and let me know if it works better for you. Thanks for the input.
Hi everyone, just a couple of questions. I've been trying to do the chat thing, which I have never done before, and I am not having much success. Sometimes I can see the message I've written, and sometimes I can't (especially if I leave the chat room, then re-enter). It seems that my previous post disappears. Last night I posted a hello message, then it dissappeared. this morning it has reappeared. Maybe I am just overlooking the obvious, but it does seem kind of confusing. Hopefully I will get a chance to meet some of you in the chat room - if I can ever figure it out, or show up there when someone else is there! One more thing, has any one ever used Hip Helpers, the little lycra shorts for hip abduction? If so how did you like them, and did they help. My little David is gumby man. Sometimes he even sleeps in the Chinese splits. Any good advise in this area would be great! Thanks
Mary, I just read your story about your son at school with the little boy with CP. It brings to mind an incident that I remember with my son Drew. He is 20 years old now and some of you have probably read, A REAL CHARACTER!!! Several years ago when he was in school he had a boy with CP in his class who was very profoundly affected and had to use an electronic communication board with a pointer fastened to his head. They wheeled him in to the class one morning and Drew ran over to his aide and asked if she would "please plug Jim in so they could talk" The teachers all got a big laugh out of that. This past Spring Jim and Drew graduated from High School together and Drew proudly marched in the processional pushing Jim in his wheelchair. It was very touching and there were alot of hankies used that night.
Something very touching happen to me this morning when I dropped my son off at school and I thought I would share it with you. My son who is three years old is in a program for children with disabilites. He has DS and in his class room there is a little boy who is in a wheelchair. I think he has cerebral palsy. Well anyway this morning when I dropped my son off the little boy was on the floor playing with a doll house. My son went right over to him and bent down and patted him on his back. In a lanuage that only Arnold can understand, I'm sure he was saying goodmorning to him. Not only do children with DS have an extra "let's make mommy laugh" gene, they also have and extra "loving" gene. He is always waving and saying hi to everyone he meets. If we could only work on the sour ---- who look at him and turn their heads. I guess they are afraid they will "catch" what ever Arnold has. Isn't it a shame that love, happiness and caring is something we can't "catch".
Your message really touched me; probably because you remind me so much of myself when my son was born.I was 28 years old when I had Casey, he was my first baby, and also like you, I knew very little about Down Syndrome. I really think I couldn't remember ever meeting a person with Down Syndrome in my entire life. When they told me that my baby had Down Syndrome, the only thing I could relate it to was a picture I had seen in a Biology 101 textbook chapter about genetics.I hope you get some kind of feeling from the people on this site, that we felt as you are now. Overwhelmed, scared, sad, shocked. I remember asking another mother a few years ahead of me .."when am I going to stop crying about this?" I thought I had a pretty strong accepting attitude about it.. I knew I LOVED my baby more than anything in this world. But I still cried some everyday about what it all meant.Barbara, the mother of a four yr old daughter at the time, said the most comforting thing to me. She didn't tell me to pull myself together and snap out of it. She said to me, when my son was nearly 3 months old, and I asked her "when am I going to stop crying about this?" She said "maybe you will cry about it everyday for awhile.. and in a few months, you will notice that you only cry a few times a week, then a long while after that.. it will only hit you every month or two... and pretty soon the joy of watching your child grow while replace it almost altogether. Maybe you will only cry every now and then." I really appreciated that response. There is nothing wrong with feelings of sadness and shock. It is so normal. What I hope you will see is the wonderful future you have ahead of you with your new baby. All the terrible scenarios I imagined about how kids would treat me son... really never materialized. It is a whole different world from what you and I grew up in. We had so little contact with people who are different. But I don't think that is the case anymore.Wow, your baby is so brand new. I know it is not the homecoming you expected. I can remember all the "what did I do wrong? What did I do to deserve this? Am I being punished for something?" thoughts. I know exactly what you mean about your lives getting back to normal. My favorite thing to do on the way home from my son's many doctor visits was to put him in the stroller and walk around a mall and "pretend" like a was a normal new mother.I know your life must feel like it has been turned upside down. I know it takes time to feel like it is alright againThere is so much joy in store for you... you will see that little by little. Michelle.
Hi I recently had a baby with DS (4 weeks ago) and am trying to cope with the shock. Some days are easier than others. She is still in intensive care and will need surgery for a VSD. It is very difficult since it is our first baby. I hope someday our lives will get back to normal. It seems so strange to us we never even new a thing about DS until now and its all so overwhelming. Well, we are hanging in there and hope to get our baby home soon.
I got on-line for the first time tonight. Had a great talk with another mom. I have a 20 year old son with DS. We feel so blessed and lucky. Our son is very healthy. Aside from respiratory problems his first few years he stays well better than the rest of us and when he is ill, doesn't let it stop him. He keeps us in line and is such a character. When he turns 21, he says he is going to the gambling boat and drink wine. Where did we go wrong? He keeps us in stitches most of the time and is a joy to have in our home.
hi I have been looking for a group home for a 36 year old Down's man.His mother has Cancer and lives alone I am a CNA and am looking for her.I used to work for a group home in the area but it has closed down,and I dont know where tolook.I dont know if she is terminial but it dose not look good.Any help finding a place would be helpfull.He is at a very low level of Down's about 18mo.He cannot talk but he isdoing well with me with his ADL's.He also has problems with his eyes but to what extent is unknown. PLEASE HELP
My son Justin, was born 5 yrs ago. It was an uneventful pregnancy, my first, I was 26, It was a very fasst delivery. He was given an abgar scor of 10. 2 hours later he required oxygen, then extensive oxygen and had to be transported to a Children's NeoNatal Intensive care. It was there they informed us he had DS and a heart defect. He didn't look like the typical DS baby but he did have the palmer crease and the space between the toe and he was floppy. That day was very traumatic, we were very upset and his father went into a deep depression. He has become the joy of our life. We now have 2 other children too. Justin has had heart surgery at age 2 and now has leukemia. He is doing extremely well so far, he is a fighter and has quite a character. He still can be frustrating but he is very lovable and looking for a good time.er
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