[AmyGarner]

Does anyone have any experience with Down's Syndrome? We just found out the baby we are supposed to be getting may have it (our county still hasn't received the file, so all info is a little sketchy), and neither my hubby or I know anything about it. Thanks for any help

[momto59]

We have had 2 girls with Down Syndrome. They both were very "floppy" having very low muscle tone. A child w/DS will need to be in Early Intervention for Physical Therapy, therapy for speech and feeding issues as well as developmental. Both our girls (and common with most Down babies) had a very hard time with sucking a bottle They tend to push their tongue forward instead of sucking. They tend to need a little more support than kids w/o DS We used to roll soft blankets into a long roll and place it on each side of them. Their milestones will be delayed but the most celebrated when they come!! Both our girls were pretty easy and pretty content but that may have just been them. One thing that can be a little scary is that alot of times they can have a heart defect. One of our girls did, one didn't. Our 1st Fd had 'minor' surgery at 8 mos to correct a valve. She was home the next day and doing great. The most important thing would be to get them into Early Intervention they can give you plenty of help and suggestions. Other than that they are not much different than tour "typical" baby so just enjoy and good luck. (Our 1st FD is now 17 and the other is 8 and we still get to see them regularly.)

I agree with momto59 (BTW...WOW!!!)! I have a bio daughter with global developmental delay and she also exhibited many of the same tendencies as children with Down's. Floppy, mellow, poor suck reflex. Early Intervention will be your key if the children are under three yrs. old. After that, they should receive their services through your public school system.

Another resource for you could be "www.eparent.com" which is the website for Exceptional Parent Magazine which I find extremely helpful and supportive.

Lastly, do not be afraid of how "different" these children may be. They are more the same as others than different. Also, they will teach you lessons of love you never knew!

Good luck.

[AmyGarner]

I want to thank you both for your reassurances. I am slightly worried about any physical problems he may have, but at 8 weeks it may be too early to tell. I am very excited about all of it, and I can't wait for the red tape to disappear and he can come to our home.

[carolinec]

we had a down's baby over the summer, right from birth. She was 6 days old when placed and 12 weeks when she left to be adopted. A was tiny, and had several heart defects, but none that you would know of. She ate great! had no low tone issues,and gained weight steadily. Early intervention was involved, but didn't need to do much with her. She was just above her age, for developmental abilities when she left us. She was vietnamese, so her down's features weren't that evident visually. See what his issues are when he comes to you and get involved early, with services for him. I think as with every child, there are similarities to children with this diagnosis, but no 2 children develop the same. Alot depends on environment, and services provided when very young, and continued. A was adopted out of state, but we have contact with her new parents and her heart defects, once thought that she would require surgery within her first 6 months, 2 defects have repaired themselves,and the valve surgeries have been put off until she is about 18 months old, if not longer. They are no longer as big of an issue they thought they were. She is 7 months old now, and developmentally, right on target, so have hope. Your little one could do just fine. Give them lots of attention, and make games out of playing to work tiny muscles and expect him to do fine. Treat him no differently than you would a "normal" infant, and if there are issues, you will deal with them and get past them. Just take it slow and you'll be ok.

[elefant99]

It sounds like you have recieved some great advice about your inquiry so far. I just wanted to chime in from another perspective.

My partner's brother, John, has Downs, and really is an amazing guy. At 32 he still lives at home (his parent's choice), and he goes to work every day in a sheltered workshop. John is definately on the higher functioning end of DS and does lots of very normal things. He has a girlfriend he takes on dates, he hangs out with his friends, he goes shopping by himself, he has chores he does daily at home, he goes to parties, talks on the phone, writes letters, reads, listens to music, watches movies, paints, etc. Pretty much he does everything that anyone else would do, except occassionally he needs little extra reminders (for example, to remember to get correct change back when he pays for something, or to wash behind his ears.) John loves to come and stay with my partner and I for the weekend, and enjoys planning what he is going to do with his adopted niece or nephew someday! John received early intervention services from birth, and certainly was delayed in some ways. He didn't talk until he was 12, and even though he was "mainstreamed" he never worked at grade level. Luckily he had excellent teachers who took the time to help him along.

Now, another perspective. I work at a residential facility for children and adults with mental retardation. The facility was founded by a family who had a daughter with Downs in the early 70's, and many of the first residents were children with Downs. Back then the baby's were just dropped off when they got out of the hospital, and now there are adults who have lived there their entire lives. Most of those original adults now live in homes in the community, and work either on campus or at jobs in the community. Many of them function at the same level as John. There are a handful of adults with DS who function at a much lower level, and sometimes this is believed to be a result of lack of early intervention services, and sometimes despite the intervention, some people with DS just function at a lower level.

As a teacher, I work with a couple students who have DS and autism, which is a whole different ball game! One other thing to mention is that the DS community is very strong - you will get LOTS of support if you want it. I don't know where you are located, but I may be able to hook you up with some connections if you want them.

Please feel free to PM me if you want to ask me any specific questions. Good luck in making your decision