Advice on down Syndrome Baby

Why not just treat the woman like you would any woman who just gave birth to a happy, healthy baby?

Be compassionate, patient and supportive. Send a card to say "Congratulations!", just as you would with any happy birth. If you wish to send a gift, do so! Be upbeat. Compliment the parents on their beautiful baby!!

There are stages to acceptance and we can't guess what people are feeling or make assumptions based on how they respond in the moment, especially post-partum. Let the parents experience this, however they need to do this, with the time and support to process this news. I don't think they are in denial. They have a child with medical issues and this is super scary, no matter if it is something rather simple or a life-long issue with potentially serious heart concerns.

Gigi's Playhouse is a super resource for parents (and relatives) who get to parent kids with Down syndome.

www.gigisplayhouse.com

There are several in the Chicagoland region. They have great advice for new parents, and friends and family, too.

I don't think they are ignoring the fact that their child has Down syndrome. They are just figuring this out day by day. They have to make sense of it for themselves first, in their own time, before they can know how to share this with others.

And thank you to the previous poster who pointed out the use of "Kid First" or "People First" language we should all use when talking about people with disabilities. They are babies, beautiful babies, who just happen to have Down syndrome, rather than a Down syndrome baby. Thanks! I don't mean to be picky either. But, it does make a difference to parents of beautiful kids who just happen to be different.

They will get social services for the baby through the hospital, and I'm sure they will also put them in touch with support networks of other families of special-needs kids.

Your part is easy - just take delight in the new baby! Just admire her and cuddle her and say she's beautiful, like any other new cousin. Unless the baby has other health issues (heart issues are not uncommon), her baby months will be similar to any other baby's.

If you're close enough and able, I think it would be great to offer babysitting help when the they're ready (and help with other things that may come up, like if they need meals for hospital stays or whatever.) I'm not sure what else you can do other than be a good listener if they want to talk.

I wanted to respond as well. Even though my children do not have Down Syndrome, they both have Cerebral Palsy. They are now a little over 2 (twins) and it is very hard. At first yes I was in denial. Yes, I would say I still cry at least once a week watching other families with "normal" children. Yes, I blame myself and it is hard not too. I am learning that this is my normal life now. I agree with the other people that mentioned comments to you. Treat your friend as if she had a normal child, make play dates, celebrate big milestones. My friends have been a great support for me. When you do suggested things, though....my friends usually will send me an email and say "hay I was just looking at something on the internet and thought you might be interested in checking this out." Be very carefully (I am in support group as well with other family with "special" children) and sometimes it does hurt us when you say something or recommened something to us. Because we feel like we failed or that obviously we are not good job and you could do a heck of a lot better job.

Right now my advice since she just had her child....just support your friend, do not ignore them, let her talk, let her cry, let her complain. The first year is very hard. But she is lucky to have someone like you in her life that cares as well and she will apperciate it.

I don't know what specific advice to give you but your request made me reflect...
we always hear "girl or boy, as long as it's healthy" and while I understand the sentiment, I think there is an undertone that merits some thoughtfulness. This statement suggests that we want healthy babies (which of course we do) but the implication is that we don't want unhealthy babies.

I think it is really important for people to realize that disabilities make things tougher in some ways and introduce different struggles for parents and children, but children with disabilities are not "ruined" or less a part of our family. Hopefully as parents we make sure that our kids understand that they are wanted...and whatever qualities they are born with is part of the package, part of who they are, and doesn't detract their ability to bring joy to the family or from the love we can share with them.

i would just suggest educating yourself about Downs, find resources, people who have healthy attitudes about living with disabilities, etc and prepare your family to support your cousin and his wife when they are ready. Whether they are feeling guilt, shame or just need to keep it private until they can wrap their brains around the situation...they will probably give you a clue about when they want to talk about it. in the meantime, you can just let them know that you are available and supportive. They may be anticipating pity, so maybe showing excitement about your new baby cousin is enough- show them that the baby's disabilities won't stop you from loving her and including her wholeheartedly in the family.

take good care,
om

I have a 17 year old brother with Down Syndrome. When he was born my mom sent out the poem about taking a trip to Holland...have you heard this poem? Maybe send her a card with a gift and attach this poem. My brother is amazing! I also teach ECSE and I have had many students with DS. Every single one of those students has been a gift. They have so many great qualities to share. Mostly, she gave birth to a baby girl! She is a baby first and needs love and attention, just like all babies.

Please remeber this is still a baby who needs to be cared for just like any other baby. The parents may bot be ready for well meaning people to rain on their parade. The child is still their child and while downs is a challange it is not the end of the world. Our pastors son works for my husband as a maintance man for our church and school. He is 27 years old with Down's Syndrome. He works and does not recieve any state money or anything becasue he makes his own money. He graduated from High School, has friends and likes to go to the movies. He does live with his parents but they have a basement apartment for him. He is a great guy and we all love him. Another friend of our has as daughter who is around the same age and she also works and lives in an assisted living home with other young women. They all work and socialize and generally have a good time. She is really into photography last I heard from her.
If ther parents do not want to share this experience with others for the tme being let them alone. Send a baby present and a loving note of encouragment. This is a still a happy occasion. A new life has begun!

Having a Down's child is not the result of anyhing the mother did or didn't do. It is a chromosomal abnormality. It is too soon to see what type of programs the child may need. There are a lot of different levels of ability from one Down's child to the next. The parents should look into a support group & network with some other families that have similar situations to help them with the challenges that lay ahead. The road ahead of them will bring both joy & tears. The key is to look at all the joy this child will bring them. I have a brother with Down's & he is 48. He is loving , sweet & very stubborn, just like the rest of our family. When he was growing up there were very few programs available to him. Now there are so many wonderful opportunities. Many public schools have programs & there are also workshops. Give the family some time to adjust before jumping in with a bunch of suggestions. Just assure her that it was not her fault.

Don't say anything unless they bring it up to you. Be supportive and let them know that GOD gives down babies to very special people because they have sooo much love to give. Just listen when they speak to you. If they don't and you're at the baptism just give that child love and show the parents how to love this helpless child. I knew a couple that adopted a downs baby. The child lived to 13 years old and was a loving, hometaught, whole human being. It broke our hearts when she passed.

This is one of those situations that you have to let them come to terms with their child not being born the way they had anticipated and expected & although you want to show kindness & support, there will be plenty of time for that--they need to come to you, & then you can offer suggestions, support etc. Unless one has a very similar or exact situation, you cannot say you inderstand. let them come to you & then be the supportive family member they will need--& by the way, when you read about similar situations happening--everything always turns out much differently than it started, so just give it time for the immediate family to adjust........mom of a 3 1/2 month pre-mature girl & second on the way next week, who wasnt expecting a preemie with health issues with my first--but I must say in retrospect wouldnt have it any other way now! Good Luck & just be there when they need it.

Honestly, when they are ready to share, they will. Otherwise treat that baby as you would any other. Down's syndrome does not equal severe mental retardation..only time will tell. When they do start being more open, encourage them to teach the child like any other, as they are very capable of learning. As a fact there are people who have graduated from college not ever knowing they had Down's--it was found later in adulthood (they had very mild facial and hand differences that were so slight it was never detected).
Not taking prenatal vitamins did not cause Down's syndrome. It is a chromasomal disorder, and is more common in women who bear children later in life.

Beautiful responses from many Moms here, M.. I have a dear friend with a Down's Syndrome child and yes, he has been a total blessing, not without challenges but who is? Of course it is a huge adjustment and they have the right to deal with it in their own way, in their own time. You merely need to congratulate etc. as you would with any child brought into this world. Being nonjudgemental of their process is probably the most important thing you could do.

I agree with the other posts to congratulate her like you would any other person who just had a baby. I do have a good friend who has a downs child, he is 5 now, but I am sure she would be more than happy to talk with her and give her support. Let me know if you would like her # and I will give it to you.

Hi M.,
The Dear Lord granted this couple with a beautiful baby! What more is there to say? Leave it at what it is, a beautiful baby. If you were sending a card or gift before, send it now. Children are a blessing and this child is no different!
Best Wishes to your cousins family!

As a parent of a child with DS, first,I would like everyone to use the term down's syndrome appropriately...when you say a sentence, the noun (person) comes first then a descriptive word may come next. It was very dissappointing reading these posts that said "a downs child" or "a DS baby". Please say the childs name or persons name first and then if you have to add, "who happens to have DS", or "he or she has DS".

Please treat this child like any other child, afterall she is a gift from God and over time your family will realize what a blessing she is and how she has changed your lives for the better. It is amazing how much of a changed person I am after having my daughter. She will be 11 in one month. I have learned to not take things for granted, to enjoy the moment, to find pleasure in my daughters accomplishments no matter how big or small. She is full of love and happiness, but she is her own person and I do not compare her to other kids with DS. She will accomplish what she will accomplish and I am going to make sure she has every opportunity to reach her full potential. Children that have DS today have so many programs and opportunities that did not exist in the past. Most will go to high school and college, have a job, have a satisfying and enjoyable life (even if it is different than what others have).

I was able to share this information with family and friends right away (after about a day or 2) because I did not want people to think that I was ashamed, embarrassed etc. Everyone is different when it comes to talking about it, not everyone is ready at the same time. The parents are going through a "mourning" time if you will. You mourn the loss of what you were expecting, the life you thought your child would have, the life you thought you would have. Then you (hopefully sooner rather than later) look at life one day at a time and figure out how you can give your child the best life. When talking about DS, this includes speech therapy, physical therapy, occupational therapy, and early intervention. It is extremely overwhelming and at times very hard to deal with. There are also so many medical things that could be wrong, but your cousins child may or may not have all of those problems.

What I would suggest you do is go to the library and get information on DS and all that goes along with it...there is a TON! When your cousin is ready, she will talk about it. Just let her know you support her and love her daughter no matter what. I would suggest you not bombard her with advice or knowledge you have read unless she asks you. She may feel comported to know that you care enough to find out information on DS, and she may want to discuss things with you. As other people have brought up, Gigi's playhouse is a great resource, along with many other organizations and support groups.

Lastly I would like to say treat her daughter like any other child. I have raised my daughter like any other child and her and her sister follow the same rules and expectations. I wish your cousin and her baby the best.

What subject do you need to approach? How do you know they are ignoring it? It sounds like a private manner that people need to let them handle privately unless they indicate to you they want your opinion.
Don't be throwing resources and suggestions at them. Let them be new parents of a healthy baby and get into their new routine. The hospital will refer them to resources and when they want help they will ask for it.
All of us as parents have to learn to accept our children for who they are, not for who we want them to be.

Let them deal with their feelings about this privately.

I am sure that right now there are alot of closed door tears. Everybody wants to have the perfect baby...but don't realize that they have. You can help by offering, being around, being available, getting knowledge but not dumping it on her.Unless she asks for your advice don't give it unless it is standard parenting advice. Just being available so when she needs the ear, hand or hug you will have it to offer. Kids that have special needs are amazing. I have a child with developmental delay. She might not know that you probably should pull up your pants before you come out of a bathroom and her shoes are always on the wrong feet but she has the biggest heart and it wraps around yours quickly and won't let go.

You can ignore it until they speak to you or...you can tell them that you have heard about their daughter and you are so happy to hear that she was born! She is a blessing to them and will be a blessing to everyone who meets her.

She can look at this with optimism or be sad because she doesn't get what she thought she was going to get. It is a choice. Children with Down Syndrome are amazing blessings!!

I should know, my friend gave birth to my Godson with Down's in 2005 and we are all better off to have him.

D. D

M.~

I have worked with Special Olympics (volunteer) for 20 years. I can tell you that people with DS are exactly like the rest of us....BUT more forgiving & loving. While life won't be the same for them and there will be other health issues their lives and that of their child can be equally as wonderful as anyone else.

Treat this new baby as you would any other baby or child. Love them, hold them and play with them.

I would look into GiGi's Playhouse (South Barrington) which has wonderful programs & support groups for parents of children with DS.

I know Special Olympics now has programs for younger (not baby/toddler age)children and this activity really helps them.

My close friend has a DS daughter who is 16. She helps me in the summer as a mothers helper (since she was 14) she works PT and does pretty good in school. She also used to do Special Olympics....she rode horses and did ice skating. Let me tell you I can't ride a horse and can't ice skate to save my life.....she taught me.....

I'm sorry I could go on and on....I don't feel DS is a bad thing....just another type of lifestyle. Love this little girl and always encourage her to do new things and try new things. Those with DS are only limited to what we tell them they are.

Let the Mom know you support her and love & welcome their new baby.

Jen

I have a 30 year-old brother with Down's and he is the light of our lives for my 3 sisters and me. Although sad, shocked and disappointed now, they will see what a joy this child will be and bring to their lives in ways they would never expect. Growing up my parents treated Billy like "normal" and then so did we and then so did those in our community. This area has SO many activities and possibilities for Down's. Be the good friend you are and celebrate the baby like normal just be there for her when she wants to talk and cry. It sounds like you will!

If they are in this area, there are 2 great resources - Clearbrook Center in Rolling Meadows works with these parents - they have teams of parents who can help with counseling, support, and so so much more.

Downs has nothing to do with prenatal vitamins. Sounds like they are in denial right now. They will have to work through the stages of denial, anger and then later acceptance.

When the child is a little older - there is something called Gigi's playroom in Hoffman Estates - a storefront play area started by parents of a Down's child.

PS My neighbor's child has Downs.

M. H in Elk Grove

Ii have a very dear friend whose daughter was born with Down's. She blamed herself, without telling others, that she did something to deserve this. I found that I had to just be there as her friend, support her, love her, the baby and let her come to terms on her own. There were times when open periods came so that I could openly talk with her about the situation. Be there to remind her she is not being punished, don't ignore it, but you will know when it is okay to talk. Sometimes it is just best to listen and if she needs it, a shoulder to cry on. That was the one thing that she told me later about myself and another friend - she appreciated the shoulders, the no judgments for not telling everyone and inviting everyone over and that we weren't there to beat it into her head, but let her digest in the best way that she could. Remember that her husband will need suppport to, so if there's aman close to him, he should be doing the same.
When she is ready to talk, you will know. It is a shock and it becomes about blame - what did my husband do or what didn't I do while she was in me, is God punishing me for something, what is it/ Remind her that she has the most special wonderful child and God blessed her this way because He knew that it would bring them great joy and a bonding. They may not see that now, but keep reminding her that all children are precious. My girlfriend's baby has been the most special and wonderful blessing that I could have shared with her. She has changed the whole family!!

Hi M.,

First of all, what a sad story. It is always heartbreaking to hear about these types of things, and I know dealing with them as a family member can sometimes be awkward and difficult.

That being said, I think in this situation, you need to let the parents dictate the pace at which the baby's condition is revealed and handled. It would be extremely inappropriate for you to approach the subject with them at this time, especially since they were not even the ones who told you about the baby's condition. You are only privy to this information second-hand.

As I'm sure you recall, having a new baby is a difficult transition for any family, let alone when that new baby is born with challenges. When a new baby comes into the world, that new family needs time alone to bond. In this case, they may need even more time to adjust. I'm sure they will welcome outside support when it feels right for them. In the meantime, give them the space they need to come to terms with their baby's health and their own family dynamics. We have all heard that, in response to misfortune and heartbreak, people cope by going through stages. Denial is definitely one of those stages. They will work through this, no question. But they should be allowed to do so on their own terms, as any parents would want and expect, without being judged. What happened to this baby is no one's fault, it is just an unfortunate twist of genetics. Once the parents fully accept this, they will begin to come out of their shell, and will integrate the new baby in with the rest of the extended family.

Best of luck to you and your family.

Hi M.. Recently, a friend of mine gave birth to a child with Down Syndrome. I did a couple of google searches on things like "what to say to a friend who just had a baby with Down Syndrome" and found a couple of wonderful websites/blogs written by Moms that will give you some GREAT information.

They all say the same thing the previous posters have said: treat the Mom and and baby just as you would welcome any other baby into your family! But these sites will also give you some wonderful, basic information about Down Syndrome that may help your understanding. Plus, a few of them listed the top things NOT to say...which I also found very helpful. Do a couple of creative google searches and see what you find!