Cousin's New Baby Has down Syndrome

Updated on December 15, 2008
C.K. asks from Saint Paul, MN
26 answers

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.

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R.K.

answers from Appleton on

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.

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S.H.

answers from Green Bay on

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

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E.T.

answers from Rochester on

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

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
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J.D.

answers from Des Moines on

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.

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J.B.

answers from Minneapolis on

Dear C.,
One of my closest and dearest friends has a 5 year old boy who has Down Syndrome. They were also not aware that he had it until after he was born.

What I can tell you now is that my friend adores her son and think there is no one cuter. I watch him on regular basis and this is what I can tell you, he's a stinker. He only will give me a hug and kiss if he feels I deserve it, however I can totally trick him into doing it by having his sister give me one first. He is sooo stubborn, but that's because he likes to do his own thing. He thinks he is soo funny, which he is and we have spent hours laughing and playing together. I absolutely adore him.

My friend gets help with him for his OT and PT and has a great pediatrician. He goes to kinda like a headstart (she is also in WI so I don't know if that's what it is called) program for children with special needs. Next year she will be getting him ready to go to kindergarten which will be a big step. Developmentally of course he is behind where a normal 5 almost 6 year old would be. He is still not potty trained that stinker, but he will go when have him sit down. He has a speech delay, but she has worked with him to learn sign language and he does that so well. Whenever he is over and starts to get a little too antsy, I will put in My first Signs and he will sit and watch and follow along doing the signs because that is his element, that is what he knows.

If you have any further questions or if your cousin has any questions, feel free to e-mail me. I can ask my friend or give information from my experience with him. I myself that a child born still due to trisomy 18 (where down's is trisomy 21) and have a lot of connections with families whose children are still living with trisomy 18 and I try to be a support and connection for any parents whose child has been diagnosed or has a chromosomal abnormality. I would be more then happy to help in any way that I can for your cousin.

I am sure everyone is scared, because there just is still such an image portrayed for these children, but I am sure they will quickly fall totally head over hills for this precious child.

J.

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S.M.

answers from Waterloo on

there is great support out there now so i would encourage them to find it. my sister with down syndrome was born in 1977 and it was a new concept for the parents to take them home at that time. my parents wouldn't have considered any other option. doctors said she wouldn't walk, talk or make it to her 20th birthday. she actually wasn't that far behind the other kids thanks to alot of physical therapy and special ed preschool, etc. she even graduated high school and is now 31 years old and very self-sufficient in a group home setting, even holding a job. the stigma is still there and there are still people that stare but it's getting to be a common thing here in my town so it's not as bad as i always thought it would be. i spent my childhood trying to protect her from teasing and i probably didn't really need to. definitely have them look into physical therapy techniques they can do at home. muscle tone is poor. fyi my mom had my brother after having a down's child and he's normal (well as normal as a brother can be!) and i'm the oldest. so they could easily plan for more kids in the future. i only mention that because it is a very common worry. good luck to them.

S. m

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S.C.

answers from Omaha on

I personally do not have experience with having a child with a disability but I used to work with children and adults with disabilities. Like another poster said, you will find so many things about this child that you will fall in love with. Yes, there will be different challenges that the child will face, but with a lot of love and encouragement, he will be able to do a lot of things and will hopefully exceed expectations.

Do they live close to a bigger city? Many cities now have different support groups, numerous places to get different therapies, and chances for early intervention. That is one thing that I know a lot of parents I worked with would stress is the early intervention. When kids are taught things young and start with the intervention young, they tend to do better than with later therapies. A lot of places that I know of for early intervention either take insurance or have a sliding scale for payment. They usually do not want lack of funds to hurt the child get services.

So many people with Down Syndrome live full, happy lives. We took our kids with different disabilities all over the city and did different activities with them. The older kids would go to concerts, musicals, the zoo, sporting events and other things that "normal" teens would do. Their son can have a great life with all the support and therapies that are out there.

One thing to think about with DS, is that structure is amazing for them. We would have many kids with DS do wonderful for us because of rules and structure but do horrible at home because the parents would just let them rule the house. They did not want to be hard on the child because of the disability. Yes, things might not be the same as with a typical child but rules are still important.

I miss my job and the kids so much because they were always wonderful to be around. They could always make you smile and see things in a different way than you would ever look at something. I think I learned more from them than my "normal" friends. Besides learning patience, you learn to love all sorts of people no matter what they look like or what they can/can not do. You also are amazed with what they do learn. Many parents had lower expectations for their kids and as the kids would bypass those, they would have to up their expectations so the kids would continue to grow.

Be blessed by this child. He is beautiful and will add so much joy to their lives!!

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D.G.

answers from Lincoln on

I personally think that Down Syndrome babies are the cutest! That being said, I'd just tell your cousin to treat her child like she would any normal child. Down Syndrome children and adults commonally have heart and other health problems, but if it is watched, they can live long full lives. Depending on sever the condition is, is how much help they will need. I worked a place that served ppl with mental and physical handicaps, we had a lot of ppl there with downs and they ranged from ages of early 20's to late 60's. People with Down Syndrome are more likely to get alzheimer's then most people.
I would tell your cousin to start looking for help now. I'll bet you can look it all up on internet. There is a lot more know about down syndrome then there used to be, people with Downs are living longer and depending on how severe it is will determine how indepent he will be when he gets older.
I would go, cuddle the baby like you would any other child and let your cousin know you are there to help.

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K.S.

answers from Minneapolis on

Hi C.,
5 1/2 years ago, our first child was born. Shortly after his birth, the doctors told us that he has Down syndrome. We were like your friends in that we knew nothing about it except that you didn't want to have it.

It is a very overwhelming situation to be in, but the great news it there is a TON of support out there and so much information.

What is most important for your friends to remember right now is that their baby is like any other baby. He'll cry, keep you up all night, want to be rocked, will pee and poop and throw up on you, and make you so happy with his smiles that you just melt - just like any other baby! The best thing for them to do is simply love that kid.

Your friends are going to go through a grieving process as they mourn what they think they lost, and then you figure out that the only difference is that they are going to go down a different path than they thought they were and they will learn that this child will teach them things that they never knew they needed to know. He will open up a whole new world to them and enrich their lives in unimaginable ways.

Are there questions about what kind of life he'll live? Absolutely! But, really, you ask this question about all of your kids. What will she be when she grows up? What college will he go to? What sports will he play? And the list goes on and on. But, listen, there are no gaurantees in life and no matter how much your want your kid to be the quarterback on the football team, he may end up singing opera. You just don't know.

Kids with DS do have a wide range of abilities, but overall, they are really just like other kids except that they learn to do things more slowly. More than likely, their son will walk, run, play ball, talk, read, write, have a job, and maybe even get married some day. The outlook for these kids is increasingly more positive than when we grew up.

Medically, I would make the following suggestions:
1) Get in touch with a specialist that can be used as a support system to their regular pediatrician. We go to the Down syndrome clinic at the Children's Hospital in Minneapolis, but there should be other Children's hospitals that they can go to. If the distance is too far, I would think that they could at least get a phone consultation type scenario. There are also lists out there of what medical tests should be done at what age, etc. Kids with DS do have a variety of medical issues that they are more prone to: 50% have a heart defect, many have gastrointestinal blockage, they have a higher incidence of childhood leukemia, celiac disease, neck instability. There are several specialists that they are going to want be in touch with along the way, but a good beginning is their pediatrician and a developmental specialist (like at the DS clinic.

2) Have them contact the Down Syndrome Association of Wisconsin at www.dsaw.org - they will have lots of information, possibly a new parent packet, and contacts for them for parent groups in their area of the state. Chance are, there is already a support group near them and if not, there are many websites with discussion groups, etc.

4)Put an ENT on the list of doctors to start with. Most kids with DS have issues with ear infections and fluid on the ears because of the smaller faciocranial structures. The vast majority have PE tubes in their ears at a very young age - my son's first set was at 5 months old because he had fluid, which effects their hearing and ultimately speech development.

5) Get in touch with their school district immediately. The school district will send a team to their home and will start therapy in their home with their child as early as a month or 2 old. The school district can be a very valuable resource to them and I highly recommend developing this relationship.

This can be so overwhelming and seem like so much to learn, so tell them to slow down and take it one step at a time. Once they know that there are no medical issues that are urgent, they can relax, enjoy their baby, and learn as they go (just like we all do with our kids).

Please feel free to pass on my name and email. They are more than welcome to contact me. I own The Special Needs Store so I look at hundreds of products, talk to many, many parents of all disabilities, research numerous organization, websites, etc. I am more than happy to pass on some of what I've learned over the last 5 years.

Just an FYI: my little guy, Joe, is now 5 1/2 years old. He runs around like crazy with his younger sister, gives me great big bear hugs and kisses, throws temper tantrums, loves his movies, started Kindergarten this year, knows his alphabet, played on a soccer team last summer, and is one of the loves of my life! Life does go on and you learn to appreciate what you have - a very special person.

"When one door closes another opens. But often we look so long, so regretfully upon the closed door, that we fail to see the one that has opened for us." Helen Keller

"If you do not hope, you will not find what is beyond your hopes." St. Clement of Alexandra

My name is K. and my email address is [email protected]____.com

Tell your cousin CONGRATULATIONS! on the birth of their son!

K.

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M.C.

answers from Minneapolis on

I have a cousin that I grew up with that has Down Syndrome. She is now about 31 or 32 years old. She was (and still is) one of the happiest people I have ever met. She hugs everybody and is so happy to see someone she recognizes.
She went to my school when we were growing up and everybody in the whole school knew her and loved her.
Down Syndrome varies on its severity. Some people are fully functioning and grow up to live on their own, get married, have jobs. Some need help with some things and not others, some need more help with their day to day activities. Some can talk very well and some are harder to understand. Its hard to say how your cousins child will be like until he grows older.
Down Syndrome is not caused by anything the mother did. For some reason, a child with Down Syndrome has an extra chromosome

For more information on down syndrome..you can go to the National Down Syndrome Society at www.ndss.org.

M.

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A.Z.

answers from Green Bay on

One of the posters here referenced this short prose piece...here it is in its entirety....beautiful....just like your cousin's new baby. She and her family will find unexpected joy in the little things and your support is so important right now. Kudos to you for realizing she will need help--you sound like a very nice person and I know you will help her in her new journey.

WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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G.G.

answers from Appleton on

Hi C.,
I would strongly recommend them to talk with their pediatrician and get connected with the nearest Early Intervention services (birth to three). Each county has their own set of service providers. I am a pediatric speech-language pathologist for birth to three ages in Wisconsin. And yes, we start with babies with Down syndrome as early as "birth". There are speech/feeding, physical and occupational therapy services that can provide your cousin with valuable information about what's to come and therapy to aid in that child's progress. Please contact me for more information or with questions..I would be happy to try and help them get connected with therapists early on.

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J.A.

answers from Omaha on

C.,

I don't know if I have any advice or experience with this situation, but I do have a story that just happened recently. I was visiting with a family friend and she was at church one day when a lady sitting near her asked her "You look familiar, do you have a handicapped child?", thinking she was someone she new from a circle of people she once knew. My friend said no and the lady went on to say she had a handicapped son, who was the joy of her life and lived to be 50, which was miraculous, given his type of handicap. This woman was in her 80's and for most of her son's life she was told repeatedly to put him in an institution. She didn't, and also did not have the resources that we have today. She never regretted her decision to raise this child and found that her life was so fulfilled in a way that no one could have explained to her when he was born. He was an amazing blessing in her and her family's life, despite what so many thought, did and said about raising him. She reached over to my friend and said "God doesn't make mistakes"
If your cousin has a spiritual side, this would be a good time for her to search in that area of her life. There are also so many resources this day and age to get support, help, education and more.
Give her love and support, just like you would for any baby. He is a miracle, not a mistake. The experience and things she will learn from parenting this baby will be ones that no one can predict. Hug her and hold this new bundle of joy. I am sure he is very sweet.
Tell her congratulations, every baby is a blessing...
J.

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C.R.

answers from Minneapolis on

C., from what I've seen in my daycare/education experiences, DS children are truly a blessing. Please don't forget that or tell your cousin any different than that! DS children tend to have sunnier dispositions and find joy in nearly everything in life. Their faces light up at the slightest things and if their parents are open to it, their little boy will be more of a joy to them than anything else.

That being said, there are a number of challenges that they will face with a DS child. If they're in a rural area, their options for medical professionals will most likely be limited. They may need to travel to a larger town to see someone special every so often. There are educational programs out there through medical facilities that their insurance would most likely cover and which may be greatly beneficial to them. As for your part, I would suggest sending them a couple of books to help provide them with references and guidance. Here are a couple that I've found helpful:

http://search.barnesandnoble.com/Road-Map-to-Holland/Jenn...

http://search.barnesandnoble.com/Babies-with-Down-Syndrom...

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E.I.

answers from Duluth on

just help them to know that they arent alone, there are many parents going through the same things, and none of them love their child any less. i would see if you could get contact information of someone whos got a child with DS and give it to them so they can talk to that person in their own time. its going to be very difficult, as this is not the baby they expected, this is not the life they expected. look for an online support group, possibly through a main ds website or something. but never push, let them have the information, and they can check it out when they are ready.
otherwise, just show them the same love and excitement that you would show any new parents. yes, their child looks different and is different, but that doesnt mean that the baby doesnt deserve to be treated normally! :D the best thing you can do for them is to treat their new baby like he is the most special baby, and beautiful in his own way
God bless, and you can pray for them - that always helps!

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R.H.

answers from Milwaukee on

We have a wonderful little two year old boy at our church with Down's. He loves the contemporary music and on the last song mom and dad let him go into the main aisle a little bit so he can dance and clap. He brings so many smiles to everyone!

I would suggest the parents may like to join an online support group and get some advice from other parents about how to help their child reach their full potential and to deal with the challenges that will arise. --R. H.

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M.K.

answers from Sheboygan on

I am a pediatric Physical Therapist and Down Syndrome is my FAVORITE diagnosis to work with. These children are generally so sweet (although can become easily spoiled, so be careful!) and unless there are other medical issues, will "get there" with motor skills, etc. EVERY county in Wisconsin has a "Birth to Three" program. It is FREE and Down Syndrome should be pretty much an automatic qualifier for the program. Through that program they should be able to get the services (PT, Occupational Therapy, speech services, early education, etc) they need! The doctor should have made an automatic referral to "Birth to Three" when the baby was diagnosed. If this hasn't happened, your cousin can and SHOULD ask for that referral immediately! They come to the house, so there should be no outside travel. Where in WI are they? I may be able to find a phone number if they haven't already been hooked up! Send me a personal message if you want more info. And remember to encourage the family to love and cherish that little baby! they did nothing wrong--it just happens sometimes! Good Luck!

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B.B.

answers from Minneapolis on

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!!

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B.P.

answers from Minneapolis on

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.

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D.J.

answers from Des Moines on

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.

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D.L.

answers from Rapid City on

Hi C. -- thank YOU for being such a caring and supportive cousin!

Have your cousin contact the school psychologist at her local school district. In each state/district, there is a Birth to 3 Program. This program brings in physical therapist/occupational therapist/and speech-language therapist along with early intervention teacher to work with her son right from birth and it is ALL FREE OF CHARGE!!

One of our secretaries at our school has a little nephew also born with DS and they were told he probably wouldn't even walk, let alone talk, until he was 2 or so. Well let me tell you -- this little guy is not just walking he's running and talking like any other little boy his age and he is only 1 1/2 yrs old!

Depending on his severity of Downs - he can lead a "normal" life, living on his own or in a group home atmosphere, have a job and get married as an adult. If the parents treat him as if he has a disability and can't do anything, then this is what the son will grow up believing. THEY need to change their mind set in order to be the best parents possibly.

Rejoice in this special gift from God and love him as you would any other child born into the family.
Blessings Always,
D.

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E.W.

answers from Madison on

Hello--my daughter was born with DS and we were not aware or expecting it ahead of time either. First let me say that she is incredibly healthy, happy, and very social and popular person. my foremost advice would be to love, snuggle, and treat this baby like any newborn you were meeting--congratulate the parents and let them know that people with DS typically live very purposeful functional lives like every human being strives to do. I would also recommend finding a local chapter of a DS support group so they can meet other parents and kids and see just how amazing, beautiful, and "normal" (whatever that means=))kids with DS are. Your cousin should also look up the Birth to 3 program (the number should be available thorough the hospital or the local school district) and through B to 3 they can receive services such as physical therapy, occupational therapy, and speech depending on the needs of the child. This is a service that every state provides and for us was completely free because we weren't making much money at the time. Look for some books online or at the library about
DS or families w/ DS--be sure to get current books --I would recommend Expecting Adam and parenting a child with special needs. Read as much as you can while you need to and them put all the books away, help your cousin love this sweet being, and just take it day by day. If she can reach a point of acceptance she will love this child just as fiercely as she would any. Also help her share the news and enjoy this boys birth-- put out birth announcements, and gather her supporters so she knows that this baby will be accepted by all. One last thought is that her son should be eligible for insurance through the Katie Beckett program (hospital or birth to 3 should have info on this)--this has been wonderful and allows the child to receive any care he needs w/o paying out of pocket. take care E.

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M.D.

answers from Minneapolis on

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)

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D.M.

answers from St. Cloud on

C.,
I know exactly how your cousin feels. I had a less than perfect pregnancy with my daughter. At 3 hours old the doctors told us they suspected Down Syndrome. We were also in complete shock. Now, at 6 months Quinn is doing very well. Your cousin needs to know that neither of them "caused" this to happen. You and the rest of the family need to know that it is okay to be sad and happy at the same time. Also, this phrase has become a mantra for me: My daughter has Down Syndrome, it is a part of who she is, it does not define her.

She will probably feel very overwhelmed with the news and trying to learn everything. The hospital where I gave birth put me in contact with a local mom of a boy with DS. She was incredibly helpful in getting services set up and filling me in on information I never knew. Your cousin should contact the local school system to get her son enrolled in therapy and special ed as soon as possible. This service is completely FREE. My daughter started therapy at 2 months old. Also, if she isn't already, she needs to get herself and her son on Medical Assistance, go through her county health and human services.

The family will need to be very supportive in a very active way. For example, my daughter was born in June and my mom is a school teacher so she was able to come to my home several days a week and take care of my son and new baby while I was busy getting paper work together and making appointments to set up services for my daughter. But also later when the normal stress of being a new mom plus the stress of having a disabled child mount up, your cousin will need a break. Take the baby for a day or overnight if he is on the bottle. Even a few hours here and there.

You can do research on the Web too, but be wary of any information you find that is more than about 5 years old. They are learning new things about DS all the time. My pediatrician even told me that college might be possible for my daughter. In the town we live in, there are several group homes for adults with disabilities and these people hold jobs in the community and have active social lives. Try to help your cousin in any way you can. Sometimes just being there to talk to can mean the world.

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A.F.

answers from St. Cloud on

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!

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