C.K. asks from Saint Paul, MN on December 13, 2008
Cousin's New Baby Has down Syndrome
After a difficult pregnancy and an emergency c-section, my cousin gave birth to a son w/Down Syndrome. They did not know ahead of time that he had it, so they are in shock.
To anyone out there who has a baby with DS, or is close to someone with DS, what kind of support, both emotional and practical, can I offer them? They are completely unprepared and uneducated. For example, my cousin was asking the doctor what she did during her pregnancy to "make" the baby have DS. They have no money, this was an unplanned pregnancy, I could go on and on. The entire family is in the dark about DS, thinking this baby will be dead before adulthood or that it has zero chance at a functional life--everyone still believes all the myths that exist.
They live in a small town in WI, and I am not convinced that their clinic is going to be of much help. From what she went through with her pregnancy, it sounds pretty backwoods to me.
Thanks for listening, and I'll take any advice anyone has to offer. I haven't yet talked to my cousin, but I'm going to see her in a week. Thanks.
Featured Answers
R.K. answers from Appleton on December 14, 2008
I grew up with a boy who had Down's. This was back in the '60s. Back then his Mom read everything she could and took charge of his education. We also live in WI and lived in a very small community in Northern Wisconsin. My advice is to start researching online and learn as much as you can about Down's. Most people with Down's are able to get jobs and function at a very high level. Many are born with a heart defect and that can cause a shortened life span.
There was a TV show in the '80s that had an actor with Down's syndrom as the star of the show. I can't remember the name of the show but Kellie Martin played his little sister.
S.H. answers from Green Bay on December 14, 2008
The listing below is a TV show with a Down Syndrome actor, good show.
Life Goes On (TV series) - Wikipedia, the free encyclopedia
Nov 20, 2008 ... Life Goes On is a television series that aired on ABC from ... The Thachers
sought to have Corky interact with regular society after ...
en.wikipedia.org/wiki/Life_Goes_On_(TV_series)
We are friends with a family that has Down's syndrome man who is in his 50's. He is able sing Christmas carols with us, works on a latch hook rug, carries on a conversation. I was in a girls scout troop witch helps with Down's syndrome people. Depending on the severity of the Down's syndrome the child can have an ok life.
They need to see if they can find some sort of support group.
Best of luck,
S.
homeschool mom and business owner
More Answers
E.T. answers from Rochester on December 14, 2008
I don't have a baby with Down Syndrome, but with our daughter we had a 1 in 60 chance that she could have it. Even knowing ahead of time that there was a possibility was terrifying. I have worked with children (in schools and through providing respite care) and adults with Down Syndrome (through an organization that provides job training for adults with disabilities) off and on over the last 22 years. My job has never been more rewarding than when I have worked with those individuals. They have been some of the most loving and accepting people I have ever known. The very first Down Syndrome girl I ever worked with has become an excellent swimmer and has even competed in the Special Olympics in China! One of the last men I worked with who had Down Syndrome just recently died. He was in his 70s. Yes, there will be challenges, but there are so many rewards!! Encourage your cousin to get in touch with the National Down Syndrom Society (www.ndss.org). They have tons of resources from books, to videos, and connections to local support groups. Also encourage her to get as much information as she can about early interventions. As someone else mentioned, her son will qualify for social security benefits because of his "disability". That will help with the financial part of it. Also have her check with Easter Seals. They have great resources too. At one time Easter Seals offered respite care for families of children with disabilities. A trained caregiver would come into the home and watch the children so parents could get away to run errands, attend appointments, or get some needed R&R. It was free or cost very little for families. It will be a scary and challenging road, but your cousin's son is going to be an amazing blessing in their lives. I will keep them in my prayers.
1 mom found this helpful
L.C. answers from Janesville-Beloit on December 13, 2008
The best thing you can so, is treat this baby just like any other. Educate yourself and maybe find some books or a local support group for her. His prognosis depends on the severity of his condition.
I had a coworker that a similar situation happened. They were completely shocked to find out their new baby had Downs. It was her Grandmother that put things in perspective....
If you planned a trip to Hawaii and ended up on the wrong plane and landed in Holland what do you do? At first you can be shocked, disappointed and even angry, but once you walk around you fall in love with all the flowers...
1 mom found this helpful
J.D. answers from Des Moines on December 14, 2008
My Aunt had a baby with DS when I was 10 years old. They named him Sam. He was the HAPPIEST baby. He would smile and smile. Full of Love. He is now almost 19 years old and still very loving and very caring but can get a little rough. :) LOVES to Wrestle and is not a small guy. I remember the doctors told her he would not live to be a year old. We threw a HUGE first birthday party. Well then they said he would be lucky to turn 5. Well we had another HUGE party. This kept going and they said he would never become an adult and sure enough he turned 18 and we had the Biggest party ever. LOL. There were many times he was in the hospital. He has very weak lungs. can't be around people who are sick. They gave him steroids to strengthen his lungs and heart. And even though he is 18 he only has the mentallity of about a 13 year old. We as a family never treated him as him he were different. We always treated him as if he were normal. Just a little behind. He took longer to walk, potty train, and I still have trouble understanding him when he talks. They taught him sign language when he was very young and they use that to talk to him alot of the time as he has a larger tongue than most people and it gets in the way. He is not dumb as most people think. He does have feelings. He does get angry easily but I think that is just because everyone on that side gets angry easy. It is just the way you raise any child. I would just be there for them when ever they need. Help them find a support group, a good school that will work with them, and lots of love. If you want I can email my aunt and see if she has any suggestions. In Iowa we have an organization called the AEA. not sure all states have it but if they call their local school district or county health department they could get info on where to get some help. My aunt had the AEA people come over and work with her and my cousin when he was very young and helped them learn sign language. they worked with speech Therapy and all that.
I just know that with Down Syndrome they can be different levels of severity. They can be just mildly behind their age group or they can be really far behind. Just work with them like you would a normal baby and see if they develop on schedule. if not keep working with them. I would also advise her to find a bigger city near here and go their for a doctors help. Her clinic should send her to a specialist. if they don't then they are REALLY backwoods.
Some children with down syndrome can live completly normal lives. They can go to regular schools and have friends just like any other kid. Some may have more health problems than others. Some may have a hole in their hearts. Some are bigger than others. It just all depends. They need to have him seen by someone who KNOWS what they are doing as far as a doctor. if they don't have one near them then they probably should consider moving closer to one.
OK well I have written alot. I hope some of this helps. let me know if you want me to have my Aunt contact you. laterz.
M.D. answers from Minneapolis on December 14, 2008
Everyone here has had excellent comments. One thing that your cousin should look at if their income is in the lower level, SSI. Apply for it right away, just the diagnosis of Down syndrome qualifies as a disability. 9 years ago I gave birth to a spunky little guy with Down syndrome, and I went through the whole denial, the crying. If you go to a book store like Borders, Barnes and Noble and type in a keyword search of Down syndrome you will find plenty of books on it. The first book that we got was Babies with Down syndrome, we got it through the Down syndrome clinic at Minneapolis childrens. We remain in close contact with our developmental NP for new problems that have come up. Tell her to enjoy her little one and that things will get better, keep an eye on your cousin to watch out for post partum depression. Most important to contact the county that she lives in and get a disability case manager - they know all the programs out there available for her baby.
M.
mom to Ryan 9 (DS, ADHD, Bipolar, asthma, allergies, lactose intolerance)
Abbey and Alexa 3 (identical twins)
A.F. answers from St. Cloud on December 14, 2008
Hi C.. I can imagine that she will go through a grieveing process. As parents we all want the best for our kids and knowing they will have a struggle is always hard to process. My daughter was diagnosed with diabetes and my first question was "What did I do to make this happen?" Keep reassuring her that she did not do anything wrong and that it's okay to grieve for the loss of the "ideal" childhood.
I worked for many years with people who have Down's. I count them to be my friends. I want to cry just thinking about how precious they are to me. They are full of love, life and bring joy to whomever they meet.
There are so many wonderful support programs. She can contact the county to see what financial assistance they can get for a child with a disability. Also, programs to assist with developement....part of my job was going to peoples homes to assist with developing living skill.
My cousins's son also has Downs. They have a nice support team and their son is THRIVING in every aspect.
This time WILL be hard but they never have to go through it alone.
Your cousin is blessed to have someone care so deeply about her and her baby!
D.J. answers from Des Moines on December 14, 2008
My cousin had a similar situation. She was 20 unplanned, complicated pregnancy, born premature. I would encourage them to be proactive. Find a physician who will be positive and hopeful. My cousin started almost immediately with physical therapy. My son was born around the same time hers was and I was amazed how much he kept up. He was a little behind, but is doing well. He will be 8 in a couple of months. They taught him sign language to help with communication, but in the last year he started talking and WRITING!! He was potty trained I think a couple years ago. He's an incredibly bright and energetic boy and just a blessing for the family. I don't think my cousin would have it any other way. God doesn't always give you what you want, but he will give you what you need. What they have is scary because it's something they have never had to deal with, but I garuntee them that their baby is a blessing. The baby will be teaching them for years to come. As for you, just be supportive. It is a lot more work, a lot more time in caring for an infant with DS. So just be there to lend an extra hand.
B.P. answers from Minneapolis on December 14, 2008
It is best for your cousin to get into a bigger, metro hospital for now. Children with DS do run risk of having respitory and heart problems. (in general)
There are SO many different levels of severity of Downs.
I work with handicapped youth and adults, so, it ranges.
It would be the best for them to get some type of help through the schools and hospital. As with any child,their environment has a huge affect on how they grow up and develope.
They need to talk to this child, and swadle this child just the same as any other. As the baby gets older, they can check into signing, as with some Downs childeren, they can have diminished hearing, but signing is good for all children as well.
Support from family of course is also going to be key. Help them with errands, make sure this baby is treated just like everyone else. Downs children are probably THE sweetest, and most loving people on Earth. The DS population that I have worked with are so gentle, and so enduring! The biggest mistake your cousin could do would be to harbor guilt for "doing" something during her pregnancy, because it is genetic, can happen to ANYONE! Please help her in making this journey a special one. It is a TON of work, and raising ANY child is. Make sure she gets help from community, clergy,family and this child will have a great life!
Best to you all.
B.B. answers from Minneapolis on December 15, 2008
First of all, having a child with DS can really be a blessing!!! Although I know people know think that at first. I have worked with many adults with DS. It's important to know the 'functioning' level of her son. Maybe they won't know for a while. But some people are very high functioning, and some are very low functioning. Those who are high funtioning can live a very normal life - and they are usually so sweet! It may be more of a challenge with a low funtioning son, if they have to do a lot of things for him all his life - toileting, help eating, etc. But either way I hope they love and cherish him, because everyone is a blessing!!
Email