Down Syndrome Surprised By Joy

11 Replies
LN - November 1

My daughter is 4 weeks old . she was born with Down syndrome. We found out from a level II ultrasound that it was a possibility, even though the doctor thought our baby was most likely "normal." As we have taken the plunge into these new adventure, we have discovered what a wonderful journey awaits for us. There is so much to look forward to, so much to learn. I just wish more people knew acurate facts about DS instead of being scared. Oh, and I am only 26. Maybe there are more moms out there tha are blessed with a child with DS.

 

mojolucas - November 3

I am not a mom yet as my bun is still cooking, however, I am a special needs teacher who works primarily with children who have DS. Always remember that they are people first not a syndrome. Keep being optimistic and try to be realistic. These folks are still kids and they pull all they stunts you pulled when you were a kid. Treat your child like a regular kid as much as possible. It is OK to have high expectations just as long as you are realistic. Be flexible and and set boundaries. Kiddos with DS need structure, all kids do. Get your child involved in occupational, physical and speech therapies ASAP. Speech adn LAguage disorders have been linked to negative behaviors according to some researchers. These kiddos, with DS, are my favorites. Do not believe the myths that they are all affectioante or all stubborn. It's not true. They have very distinct personalites as the rest of the world's population. Many artist from the 16th century paitned cherubs with DS features. As you baby grows you will, in my opinion, continue to see cherubic features in your little bundle of joy. In terms of eduacation, early interention is essential. Children with DS can learn, it just takes a little longer. Research shows that the continue to learn well into there adult lives. Be active in you child's education. If you have concerns talk to the teachers and /or therapist. They may be able to help. Be a active member of your child's IEP team. When you child is about 4 yrs of age he/she will be eligible for a public education as per the IDEA (individuals witt Disabilites Education Act)Act. An IEP is a plan of action to help your child to grow acidemically, socially, emotioanlly as well as provide service such as speech/language and OT/PT. I can only image how you feel. However ther are tons of resources and great books of there. Lining With Down Syndrome by Sue Buckely is a great read and may be inspiring for you. It was for me. It have exceprts from adults living with DS and there thoughts and feeling about it all. Remeber they are people too. They have thoughts feeling, wants and needs. Best wishes to you and your family on your new adventure.

 

LN - November 4

mojolucas, thanks for your reply. I already know all that you said. You work with children with DS, but I am blessed to raise one myself. We have friends that have children with DS too, so we know all the "facts" that you mentioned. But like you said, they are children (and babies) first. You see, what I find out is that people are quick to give the "facts" they know about DS, but the real day to day, and wonderful life expereinces come from other parents that are blessed with a DS child.

 

motherof3boys - November 5

I have a 2 year old that has DS, and he is doing very well. It is hard to keep up with him. He is very healthy! He has all the therapy's that she was talking about. You can learn alot from your therapist. We seem to have found out about the DS in simular ways. Anyways, I don't know if it's possiable, but after I found out it was almost like I just loved him a little more, ya know. Well if I can help in any way just let me know! Are there any major health issues your facing? Have you gotten connected to any support groups in your area?

 

LN - November 5

Thanks motherof3boys! Fortunately our daughter has not had anything mayor with her, even though we have spent some time in hospitals because ofz an immature liver. We have great friends that also have children with DS. God definitely was preparing us this little blessing. And you know, she is supposed to have low muscle tone but she can already roll over. The first time we thought it was a mistake, but now she does it all the time! Way ahead of my two year old! Anything you can share from your heart will be appreciated :) Thanks again!

 

lovemy3 - November 6

Hi there, Thank you for sharing that. I am 26 weeks pregnant and had an abnormal quad screen come back at 1/46 for ds. We decided against the amnio and are waiting till birth to find out. I found your story to be very encouraging, thank you for that. xo

 

LN - November 7

She is a joy. She can already roll over, all the time! She is already teaching us that we do not know what to expect, she has her unique qualities and abilities like all children do. And you know? She is only a baby, but she can bring out love from people around her, she is already touching lives. Who would have known that what the world calles "not perfect" can bring out the best in people. Bringing strangers together, making aquaintances friends, and melting hearts. I don't remember my "normal" baby who is now 2, have such an effect on people. My two girls are a blessing. If you have read the poem "welcome to Holland" I can say, Holland is extraordinary, I am glad I get to visit.

 

djh - November 12

LN, I am a head gymnastics coach for the World renowned Spec. Olym organization. Anyone who has had the priviledge of working with these athletes has already found what I know. DS children/adults are beautifully flexible and LOVE to dance! My DS athletes are the most sucessful on floor exercise and balance beam because it is such a natural fit for their wonderfully fluid body structures. It has been my experience that I get more hugs, more humor, more...well...everything from our DS team members. As with all children, each athlete is unique and perfect in my eyes. I have coached for 16 years and will continue to do so even though I graduated nursing school the end of August and now work full-time as an RN. I went in to coaching to give something back, it never occurred to me how much more I got out of it! Blessings to you and the joyous daughter you have, Take heart, almost without exception, my DS gymnasts learn the routines faster and more easily than my other-abled team members xoxoxo

 

LN - November 14

Thanks djh! You know, I always joked with our friends that also have a ds daughter that she would make a great gymnast because she is so flexible! Then when our daughter was born I thought "maybe someday she will be a gymnast" so maybe someday she will be. The first weeks of her life I wondered about her future, but as I learn more and more about DS, the more I see that I can have the same hopes and dreams for her as I do for my 2 year old. Thank you so much for the encouraging words, they sure brought a smile to my face.

 

djh - November 17

Hi LN, I am so happy you are already looking at the future with the same hopes and dreams any parent has for their child. She will bring you so much happiness! On a serious note, just as all parents need to get their children physicals before doing dangerous sports so do you. With DS there is a condition called ATLANTO-AXIS INSTABILITY. It is a "looseness" of the first two cervical vertebra under the head. It will not affect your child in day to day life, but with flexion (such as in forward rolls in gymnastics) it can be dangerous for your girl. All our DS athletes are required to get an x-ray confirmation that this condition is not present before they can compete/train in gymnastics. It is a very important thing to know about your baby. I will look on here as my schedule permits to see how you and baby girl are doing.

 

sheilabeth - December 27

I have a little girl (20 mos) who happens to have ds. The funny thing is that we often forget that she even has it. We just see her as our sweet baby girl. About 2 mos ago we started potty training, she can't tell me if she has to go, but she sits on the potty every couple of hrs and makes herself go. I could go on & on about all of her wonerful traits. We have a blog its kennabennett.blogspot.com

 

loulou83 - June 22

My kid is 18 months and has DS. I was only 22 when I had her! She's fab and I know it's a cliche but I wouldn't change her for the world. Having a child with special needs really does open up a whole new world for you. There are tons of support groups and help all over the place. Congrats on your new baby! x

 

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