Help with Down's Syndrome

I am the mom of 3 children with Downs. My oldest is almost 7 and my youngest is 14 months. All were placed with us as infants. People born with DS can have an IQ level from very low to the low end of normal. Some may even have an IQ in the normal range but I do not know anyone that does. Kids with DS can have a variety of health issues ranging from life threatening to very mild. My 7 year old has constipation and hypothyroidism. She has mild hearing loss and speech is very difficult for her. But that is about it. She does test out to be functioning at a 4 year old level. So she is delayed by 3 years. My 5 year old is very healthy, his speech is pretty good, but he was exposed to drugs and alcohol before birth and has been diagnosed with FAS. That throw another major issue into the mix. His behaviors are a huge problem. His Downs seems to be secondary to the FAS. He functions at a 24 month level with no idea what danger is. My 14 month old had open heart surgery, has feeding issues, is fed with a G-tube. But developmentally she is closer to her age range than the other two our however that may drop back also. As these kids get older their delays become much more apparent. Children with DS need parents who are willing to look out for them and make sure all of their needs are met. You will have more doctor appointments than you would have with a child without special needs. There will be therapies, IEP's when the child is school age, blood tests need to be done every 6 months to check the thyroid, hearing tests, vision exams, dental..........Anything you would do with a child who does not have DS but more often. These kids tend to stay babies for a lot longer than other children and they are very dependant on you for quite a while. Hope this helps some. We have really enjoyed our children with DS and they have been a real blessing. But they do require someone who is willing to take the extra steps needed to meet their needs. Contrary to popular belief these kids do have a mind of their own and can be very strong willed. In my experience there are behaviors that can be very difficult because of the child's lack of understanding of what is being asked or expected. They lack judgment and they forget from one time to the next so you feel like they are just not getting it or are being uncooperative on purpose. The truth is they just take a lot longer to comprehend most things. So you may deal with the same behaviors for a very long time. But they are very loving and can be very sweet too. Hope this helps a little.

Thanks for the info. I see what you mean about them having a mind of thier own. We've had our FD for 1.5 months and have come to learn, she is very stubborn;) But she is the sweetest most adorable thing in the world. Her features only mildly show the Down's, but she is only 4 months, so we won't know how delayed she'll be for a few more months at a minimum. But for now she is right on task, and we work with her every day. She will have to have heart surgery within the next few months, which scares me, but I think she'll do okay. Again, thanks for the info. Amy

Hi Amy, You will enjoy her very much! These kids can be very strong willed but yet they are the most kind and caring individuals you will ever meet. It is hard to tell just how delayed she will be as she gets older. The delays will become more noticible as she gets older. Our 17 month old is still very close to being on target and she is my higher needs heart baby. She is G-tube fed. Her IQ appears to be higher than my other two older children with DS. They are 30-50% delayed in certain areas. Good early intervention will help your daughter do her best. Our 7 year old is in school now and doing really well. Heart surgery is scary. We went through it almost a year ago. Our daughter had an ASD/VSD, pulmunary hypertension, and was in congestive heart failure so things were pertty rough for a couple of months. Be sure to go to a Children's hospital that does a lot of open heart surgery on kids. We were at a great hospital but it was still pretty rough. I am sure things will be fine. Are you close to a children's hospital or will you have to travel. We had to travel and lived away from home for almost a month. Us and 6 kids! It was not easy. Sounds like you are doing just great! You will learn as you go..........: ) Lee Ann