Down Syndrome

Brigid - posted on 07/19/2011

I have three children, one with DS, she is 8. Ever need to talk, don't hesitate!

Kelli - posted on 07/12/2011

Hi, Helena! I am the mother of 2...my youngest son, 2 1/2, was diagnosed with DS before I was in my 2nd trimester. He is the light in my life!

Kelli - posted on 07/12/2011

Hi, Helena! I am the mother of 2...my youngest son, 2 1/2, was diagnosed with DS before I was in my 2nd trimester. He is the light in my life!

Edith - posted on 07/03/2011

Helena, you have been given correct info from what I have read. The one thing I do not see is take notes on every thing from the time your baby was conceved (any problems you had while carring her) until YOU are too old to write. You would be supprised the questions asked by each group that passes through your life from this point on. You can best help dr., pt, ot, speach and teachers do the best job for your child by keeping up with every thing. For me it was too much for my brain so I made a notebook to take to all appointments. Put all doctors and treatments, milestones, when and who did each theripy, NOTES AND MORE NOTES!!!!!!!!! Do not worry if she does not walk or talk when the average child does. When she does she will not stop for anything or anyone. I was told Joey would someday stop learning. He is 17 years old and is learning daily. He did scare me when he would get something new and regress on everything else and work on that one thing for a while (maybe a week to severial months) then he went stronger than ever. He was 2 months old when I went back to work and had a teacher, speach, ot, and pt started. He was climbing fences before he walked at 2. started signing at 9 months. Most people can understand him when he talkes but the signing has come in handy at times. Go to all classes offered even if not age approate now. I went to one when he was only a few months old thinking he was to young for me to use the info. Months later I used the info when he was giving me trouble. Apply for all serverses in in your area that you can. Waiting list are long. If you can get into horse riding do it at soon as you can. It can help make her stronger and may help walk sooner. If you want me, email is edithhixon8@aol.com I am in Louisiana and will be happy to help any way I can. We keep saying do this and do that but the most important thing is love and enjoy that little girl. She will be a blessing to your family and all she comes into contact with. You have a lot of moms here for you and we can get dads to add any thing you may want to ask them too. We each come on here to learn and help others if we can. I am also on facebook if you want me.

Nina - posted on 06/30/2011

Well my son only started walking when he was 3.5. He 'moved' around much earlier but no walking til then. But hey, why be in a hurry - they'll be walking for the rest of their lives, hey!? My son didn't have heart problems but was diagnosed with 'Hirschsprungs Disease' while still ih hospital which meant a Surgery to get a Colostomy Bag for the next 7 months, before it was reversed again and his bowels healed great. It meant a daily enema for the next 8 years and now a special drink daily to help him go to the toilet (as he hasn't got any nerves in his colon telling him that he needs to go to the toilet!). He also has very weak lungs which means that, in winter, he gets hit with Pneumonia quite regularly. Having said all that, he is amazing, resilient, mostly happy and a great addition to our family. He goes to 'normal' school and has a support teacher for some of the time there. He understands both german and english and we also used sign language for the first few years to help him communicate.

Alison - posted on 06/29/2011

Hi my son Bobby will be 6 on friday. He was abit of a shock as i had the nucal scan and all was well, then we left hospital with a healthy baby, so he was 6 weeks old when anyone suspected downs, he had open heart surgery at 9 mths, hes doing really well, not talking alot relies on makaton alot. There is a group on facebook called smile, all people who have down syndrome kids

Karen - posted on 06/29/2011

Hi! I have a 2 1/2 yr. old and she is the complete joy of our lives. She has 2 older brothers who absolutely adore her.. If you need to talk or have questions I'd be happy to talk to you

Beverleigh - posted on 06/29/2011

First many congratulations on the birth of your daughter!
My daughter is about to enter her first ur of freshman high school, she is active,and quite the social butterfly. If you would Like to talk some more please feel free to contact me. Looking fwd to hearing from you. Mom of down syndrome too.

Madeleine - posted on 06/28/2011

Sharon i just want to know from you my son is also walking with his bike and trike could he have the eye balance muscle problem too. He is walking but only short distance

Alyssa - posted on 06/28/2011

I have a beautiful little girl with DS who will be one next Wednesday, July 6th. She had OHS @ 3 months, but has been an absolute blessing to my life. Just remember, she is your daughter first. Best wishes. Would love to chat more. ♥

Sharon - posted on 06/28/2011

Nick sat up when he was close to ten months old. Walking, he got around by pushing a little tikes triangle shaped toy with wheels from eighteen months until he was two. The doctor figured out he was cross eyed-a common DS trait. Once he had eye muscle balance surgery, he was mobile! Potty trained by five years old but we would still have some #2 accidents until he turned 6.
Nick does have the heart defect but didn't have to have surgery. He did have to have surgery to repair his neck-the Atlantal Axial abnormality. He does have the narrow eye drainage and nose drainage problems and asthma. He did get overweight during puberty age 16 to twenty, then suddenly he slimmed down. He was just involved in Special Olympics swimming, now he is involved in soccer plus we have been having him ride his bike. We did cut back on his portion sizes and he has slimmed down. He does have flat feet; I am looking at getting orthotics for his shoes.

Sharon - posted on 06/28/2011

Helena, I am a mother of two adult children. My daughter is 22 and my 21 year old son has Down Syndrome. Nick has taught us a lot about himself and about ourself, he never seizes to amaze us. Besides this site, there is also the National Association for Down Syndrome. It is a forum that you can read other people's stories, ask questions or comment on threads. It is really important that you have your doctor refer your child to early intervention services, some states call it Early On.
We had a teacher/consultant come up to the hospital a few days after he was born and gave us things to work on. The teacher and the occupational therapist were very helpful as well as doing what you are doing-looking for support.
Nick was involved in a play group sponsored from the educational service district then we got him into Headstart preschool then he was mainstreamed all along.
I am really happy that Nick is social but so is his sister and his cousins. We have always included him in all the things we do and treated him as we did with the other kids. There are some accomodations as you would do with any other child. Such as some kids are more sensitive and do not like stern tones of voice, some can be motivated by chores and some don't get the cause and effect thing.
You are truly blessed to have your daughter, God gave her to you because he figured you can handle it. People with Downs are certainly a blessing!

Danielle - posted on 06/28/2011

My son started walking right before his 2nd birthday, we use sign language to communticate. He is fluent in at least 20 signs. He is starting to say some words not too, he will be 3 next month.

Danielle - posted on 06/28/2011

Hello my name is Danielle, I am also a mother of three and my youngest will be three years old next month, he was dianosed withb DS while I was still pregnant with him. I am here to support you in any way possible.

Cindy - posted on 06/28/2011

Walking - just before 2nd bday.
Talking - single words (light, bubble, apple) around 2, but is just now, at 4 1/2 yo, really starting to use 2-4 words to convey wants/needs & that's with a ton of speech therapy and daily special preschool. Receptive speech came much earlier of course. Talk to your little one in short, well articulated sentences even though she can't understand you yet.

Bhks - posted on 06/28/2011

Thank-you for all of your responses.. we have started seeing birth- three program.. and also started physical therapy.. I guess my big question is Milestones such as walking and talking.. when did your little ones start?

Terralyn - posted on 06/28/2011

Congratulations on the birth of your wonderful Daughter. My son who has DS is now 14 but i had the same situation when he was born. I have 2 girls that are 2 and 4 years older than him and after he was born there were some complications with his feeding. While testing to find out why he couldn't/wouldn't eat we also found out he had DS. How old are your other 2 children? What type of DS does your child have? Mine has trisomy 21 which is the most common type. he has been the light of my life. I wouldn't undo him if I could. I could never have imagined such a blessing. Enjoy her, she is a wonderful blessing and honestly not a lot different from your other 2. I live in BC Canada, you can message me anytime, I'l lbe happy to answer.

Cindy - posted on 06/28/2011

I have a 4yo son with DS and twin b/g 19 month olds. We live in Houston, TX. I'm a pragmatist and a realist & while everything that everyone has posted is totally true, there are some specific things that you need to start right away. These are things that I wish someone had told me early on. Early intervention is everything. You likely have some state services available to you to get started. In TX it's called, "ECI" or early childhood intervention. The quality totally depends on who your therapists are. Get all the therapies you can. Now, this is important. Don't let them tell you that your baby doesn't need speech therapy since talking won't happen for a long time. This is not true. Speech therapy encompasses a lot more than simply talking. Make sure you get someone that knows what he/she is doing & don't be afraid to speak up &/or change therapists if you don't see some improvement. We wasted a lot of time with a therapist that was sweet but all she did was hug on our son & play with him. Once we switched, I saw the difference & then, we switched, again, & it was like Ian's skills just took off. My only regret is that we didn't find the one we're with now, much earlier. Your daughter needs OT and PT, as well. My son walked just before his 2nd bday. I've seen other kids with DS do it both earlier & later but around 2 seems to be the average. Your daughter probably needs some type of orthotics. It's important to get her feet & ankles in the correct position so when she grows they will grow appropriately. Some kind of music therapy or class would be good, too. Also, you need to find a preschool for your daughter. In Houston, we have The Rise School (www.riseschool.org) and they are in several cities. The school has classes of 10 kids, 1/2 of which have DS & the other 1/2 are typically developing (generally the siblings of the DS kids.) The kids have to be 9 months to start and there are a total of 6 classes of a year each. The idea is to prepare the kids for "Big school" or public school starting in kindergarten or 1st grade. Usually, these schools have long waiting lists so it's important to call & get on the list right away. You can contact me at cindy@kenswick.com if you have any questions or just want to talk. I think I cried nearly every day for a year after Ian was born. It takes a while to get used to the idea but the fact that you already have 2 other kids puts you in a much better position and your other kids will be invaluable with moving her skills along. Buckle up. You're in for a bumpy ride but you can do this. Try not to spend too much time worrying. Just get your plan in place & hit the ground running.

Cecilia - posted on 06/28/2011

Congratulations on the birth of your beautiful daughter. It was a huge struggle for me when my youngest daughter (now 5, 3 older siblings) was born with DS/heart issues. But, in time, I slowly realized what a huge blessing she is both to me and my family. Not a day passes that I don't thank God for her and laugh most of the day at how cute and loving she is. We've been through heart surgery, late walking & talking but each little milestone she achieves is celebrated in a way that I never appreciated with my other children. Would love to listen/talk anytime.

Vicki - posted on 06/28/2011

Congratulations on the birth of your daughter. Like yourself we have three daughers and our youngest has Down syndrome, she is going to be 13 soon. Like everyone here has said there will be challenges but she will be no different than your other daughters are. Would be happy to talk with you anytime....wonderful to hear of your daughters birth!

Bronwyn - posted on 06/28/2011

Hi Helena! Congratulations on the birth of your daughter. Where are you located? There is a large online community on babycenter.com that I recommend checking out. There are also a wealth of blogs out there. I'd be happy to share them with you. My son is now 2 1/2 and is doing great.

Madeleine - posted on 06/28/2011

Hi Nina, i just want to know if your son had heart surgery and at what age did he start walking

Nina - posted on 06/28/2011

hi, my DS son is 10 now, we live in Adelaide, South Australia, and if there is anything I can help with/let you know/share my advice, opinion or experience...easy done!

Arisa - posted on 06/28/2011

I have a 5 yr old son with Down syndrome. Like any child, there will be challenges. I am always reminded that our kids are more alike than they are different.
Happy to answer questions, ask away!

Aisha - posted on 06/26/2011

I have a 3.5 year old daughter with DS, we found out after she was born too. Enjoy her like all your others. Early intervention programs will/ should be available thru your county. Use them they are a big help. Ask me anything...take care

Madeleine - posted on 06/24/2011

I also i have DS son he is almost 2 years old i would love to speak to you about it it's always nice having someone in the same place as yourself