New Born with Downs Syndrome

Jennifer - posted on 12/27/2008 ( 23 moms have responded )

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My dear friend just gave birth to a son with Downs Syndrome. She and her husband have completely closed themselves off are will not take phone call or visitors. It has been 3 weeks and I am very worried. This was a complete shock to them, as this was their 1st baby. How can I help ...

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Bonnie - posted on 12/31/2008

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Everyone here has said the right things. Just keep reminding her that you are there for them. It took my husband a year to really begin to start accepting his son. Like others here I was 37 when Anthony was born. Even my 14+ years of working in the social service field/ disabilites prepared me for this shock. I cried for three days straig. I could not eat or sleep. Many people take a long time to heal. We had all the testing except an amino. Nothing ever prepared us for the shock. I feel tha God saved us from knowing. I have three boys all of which have "speical needs" at some level. I have come to realize that you never really know what life will though you. I find it harder to get a dignoises after the child has grown as you have to accept that you child that you have know will never be like others. You take one day at a time becuase something may be around the corner that may just change life for ever. Excpeting these changes with grace is hard and takes time. Everyone accepts these changes diffrently.



You may want to consider buying some books. Go to your loal book store, The book calle "Gifts" is a good one and there are may others.

Calli - posted on 12/30/2008

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SUPPORT them...At 19, my first baby, we were blessed with a DS daughter. There will be shock and they will grieve it, but it will turn out to be the most rewarding adventure they will ever take. Our daughter is now almost 8 and such a joy in our lives. Treat him as any other child and they will fit in anywhere just fine.

Christi - posted on 12/30/2008

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You never know things may turn out great in the long run. I haven't really experienced anything negative with my son and my friends or family. (although in the beginning you are quite afraid of how people will react) He is such a lovable little boy and he is blessed in that he hasn't really had any major health issues and is high functioning. Downs has many varying levels of functioning so you never know how it will turn out for your friend. Lord willing she will work through this ok. But you definitely are a great friend to put in as much effort as you have.

Sarah - posted on 12/30/2008

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Jen its so sweet that you want to be there no matter what time and you are willing to wait and that is what a friend is all about.
It will all be ok, i dont know from there point but i know with my son when i got his dignosis i was so sad, i grevied for the life he should have had and the life he would miss out on and also the life we would miss out on. It effects relationships aswell and people dont talk about it but it dose.

I just find it great that you can be there and wait for them to let you know what they need after reaching out and its great your not taking it personal :-)

Bless you and they all are in my prayers.

Jennifer - posted on 12/30/2008

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Lady Fairhil, I couldn't agree with you more !!! I think I would go the flowers and card route. The flowers may bring some cheer and good point about reading the card when she is ready. I am happy to hear that your son is such a light in your life. Yes, God makes his children in His own image therefor our children are perfect. Issac was born to a wonderful couple and I know they will step up to whatever challenges life brings them. It is just hard for me not to hug my friend when I know she is hurting. But bothering her now would be nothing but selfish on my part. Thanks again for your most appreciated advice. God Bless you and your family. Jenn

Sarah - posted on 12/30/2008

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Just another thing i said to my IL's when they told me to get rid of my baby cos of the risk he would have a disability i told them "God dosent make mistakes!"

Yes it is hard verry hard at times but his smile just breaks me cos he is my son and god created him for us, he chose us.

I belive children with special needs choose parents they know will love and care for them!

Sarah - posted on 12/30/2008

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Send a bunch of flowers via a shop who delivers or a card saying your thinking of them and if they need anything your there?
It must have been a shock, i was told my son had a high chance of a few disabilitys and the first thing i asked after he was born was "is he ok". His disability wasnt one that we found out until he was 2 1/2 thou even though the signs were there we didnt know that at the time what it was.
Sorry im not much help its just a card she can read at her own leasure and they can not feel overwhelmed or the need to put on a face you know?

Best wishes to your friend.

Jennifer - posted on 12/30/2008

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Thank you Ali. I am so greatful to you for your wise insight. I am definitly going to refrain from the "blessing" statement and God doesn't give you anything you cannot handle. I was disabled for nearly two years after giving birth to my daughter. My spinal cord was torn and I went for a very healthy woman who worked out and ran to a wheel chair bound mess. God had given me a beautiful new baby and yet I couldn't understand what was happening to me. Finally I had spinal surgery last December and after a long 10 month recovery I am finally able to enjoy my little girl. I will certainly pass along your info to baby Isaac's mom. In the mean time please keep them in your thoughts and prayers. God Bless you and your family. Jenn

Ali - posted on 12/30/2008

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Hi Jennifer, I agree with what everyone has said so far. My little girl, Amy is 4 1/2 and is down syndrome and autistic. She has had almost every health problem possible with DS but a close friend of mine whose little girl is 3 weeks older then Amy has had no health problems whatsoever. So, just like typical children, every child is different. My husband and I didn't talk to anyone but family for about one whole month after she was born. We were devestated and like someone said previously we mourned the loss of a healthy baby. It does take awhile to get over that. I would definitely stay away from saying this baby is a blessing and from saying that God doesn't give you things you can't handle. We were told that so many times and it really didn't help me at all. You are a very good friend and just keep trying. They will eventually let you in and in the meantime researching DS so that you can help her when she's ready is a good idea. We also went on to have 2 more healthy children after Amy. Take care and I wish you and your friend a Happy New Year. Things will get better. If she does want to correspond with someone else who has been through this heartache she can e-mail me at ali_van_straaten@yahoo.ca I am more then happy to share my experiences with her.

Jennifer - posted on 12/30/2008

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THANKYOU...DONNA. That is so reassuring and when the time is right I will pass all of this information along to my friend. Happy New Year and thanks again for all of your valuable information.

Donna - posted on 12/29/2008

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They will come around. I agree with everyone else, you just need to stay open to your friend. They have Parents as Teachers in Florida. I used to be a preschool teacher just north of Orlando and I had children with Down Syndrome in my class. They have great resourses in that area. Just wait for them to come back to you. Give it some time and then try again. It will happen. Good Luck

Jennifer - posted on 12/29/2008

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Donna, She lives in Orlando Florida. That is an excellent idea. Her husband has cut off all communication. I don't know how to get though to her.

Donna - posted on 12/29/2008

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I'm not sure what state your friend lives in, but Parents as Teachers are a great way to get some service contacts and get the early intervention going. I think the earlier the better. They will want the children to have as much opportunity to socialize and be apart of playdates etc...Parents as Teachers may not be in every state, so look it up. They can also be their referral to any preK special ed. programs in the area. God Bless!

Jennifer - posted on 12/29/2008

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THANK YOU...Kristin, Esther, and Christi. I think between the support group and early intervention my friends should be ok. Esther, I may lay off the "your child is such a blessing" as that maybe be overkill for them at this point. All of you have been so kind to take the time to write and reach out to me. I will keep you posted on baby "Issac's" progress. God Bless and Happy New Year.

Christi - posted on 12/29/2008

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Some people take the diagnosis as a serious shock. I think going the email route might not be so bad at all. I think support groups are great but if they don't know maybe you can research local Early Intervention programs they can get their child into.These types of programs are miracles for parents and children. You can give them the information to get started with (in case they don't have it). Down Syndrome Children qualify for everything i.e speech therapy, occupational therapy, special instruction and physical therapy not to mention SSI (social Security Income). The child could have therapist right away instead of losing time. Having therapist that can answer questions available to you (and they can do sessions out of your home) may be truly helpful for them. I am thinking more about the baby. Early Intervention can make the biggest difference and they start at infancy. My prayers are with your friends. Good luck

Kristin - posted on 12/29/2008

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Each child with DS, just like all children, is an individual with their own strengths and needs. It's a good sign that your friend's baby is not in the NICU and is at home with his mom and dad. I'm sure doctors have recommended testing and have done a full evaluation of the baby's health, so I wouldn't worry about that as a friend. There are some health issues that can be common in people with DS, but it doesn't mean that every child will have all of them. It can seem overwhelming at first, but as your friend gets to know her baby, she will find that he is an individual (person) first, not a "Downs" baby.
As for having other babies with DS, her doctor will say that her chances of having another will be higher because of having one baby with that diagnosis. My doctor told me that I had a 400% chance of having another. (I was 27 years old at the time.) My husband and I were ok with that, and went on to have two more children who do not have DS. I love our family, and all of the sibling dynamics that occur just like they do in every family. Our 12 year old is definitely the "big sister" and lets her two younger brothers know it! I can't imagine our life any other way.

Esther - posted on 12/29/2008

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Jennifer,

You can email your friend even if she doesn't respond. Like the others have said, make yourself available. Maybe send her a link to this page or this website. You can even send her my name and number. Esther Chessin 4063961817 esther@montana.com. My daughter Isabella was born 4 years ago. I was 2 months shy of 40 years old. I did not have testing. I was so thrilled to just be pregnant and having my first (and apparently only) after my 1st marriage dissolved unexpectedly and my 2nd partner was willing to jump in early in our relationship. We were shocked and I didn't want to hear all the comments about her being a blessing. BUT ISABELLA IS SUCH A BLESSING to us and all who are around her. She brings joy and love where so many people are caught up in the difficulty of life, Isabella is LIFE and LIGHT in what can be (but doesn't need to be) a gloomy world. Having a child with Down Syndrome teaches us to appreciate and celebrate EACH AND EVERY MILESTONE. Yes, there are times of frustration, wishing she would just be potty trained, that she could speak like other 4 year olds, but instead I celebrate what she is learrning and I know it has taken so work and attention from both of us. It is so sad that people are afraid of what others will think or say because everyone I know who knows a person with Down Syndrome just talks about the extra love that is brought into their world.

Find others in your community who have children with Down Syndrome and have them write your friends. In the meantime, you can meet with these families and learn all you can. Best to you and your friends.

Esther Chessin

Jennifer - posted on 12/28/2008

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Thank you Kristin. I will continue to give her space as I know she is still in shock. I will research support groups too. About how long did it take for the docs to tell you if your son had any other health issues associated with Downs? What did you docs tell you about having more children and the probability of having another child with Downs? I believe her son is a gift and that she will step up to the mother I know she can be.

Kristin - posted on 12/28/2008

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Our first baby was born with Down syndrome almost 12 years ago, and I remember those first weeks were difficult. Not only are you dealing with having a newborn, which is an adjustment in and of itself, but you are also grieving a loss of that "perfect" baby that you had imagined during the pregnancy. To you, three weeks seems like an eternity, but it is a process.
As a good friend, I would remain supportive, and offer help, but sometimes space is what is necessary at first. I remember the first "outing" with my daughter (a walk in the stroller around the block) was a Huge deal for me, and I remember being relieved not to run into any neighbors. It will get better.
Do you know of a local support group? Maybe contacting an organization like the Arc or researching groups through the NDSS could be helpful for your friend, too. She may need to talk to other moms who have "been there." She is lucky to have a friend like you.

Jennifer - posted on 12/28/2008

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Thank you Simone. I just want to be there for my friend but she and her husband are shutting everyone out. They've shut off their phones, will not return phone calls, or email and text messages. I am so worried about the new mommy.... So a letter is the way to go. Thank you so very much. It is killing me to stay away from her.

Simone - posted on 12/27/2008

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I would write them a letter telling them you love them, you love their child, and that he is just as beautiful and precious as any other baby, and that you understand that they need time and space, but you are available at any time to help, talk, listen, etc. I was in this exact situation 8 years ago at the age of 19 and I remember the pain, trauma and grief like it was yesterday. It does get easier. xoxo

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