New here- Son was just born with Down syndrome

[mamahen2coop]

I just had our son and he was born with Down syndrome. It was kind of a shock because we weren't expecting it, but after a couple days of tears and 12 days in the NICU we're heading home and ready to start our beautiful little life as a family.
What I'm wondering right now is what do I need to know when I get home. Do any mama's who've been there have any advice?
We have an appointment with his ped on Friday and I'm assuming she'll have some local resources for me. The social worker at the hospital gave us a local advocate mama to get in touch with. But what things should I get doing right away, or expect from him?
thanks!

[Linda on the move]

to the special needs board and congratulations on the birth of your sweet baby.

My DD's issues are very different (she's on the autism spectrum) so I don't have any specific advice, but I wanted to send you a .

This board is a safe space to talk about your feelings. Although we are dealing with diverse issues, some of the mamma feelings seem similar. For me, making peace with the unknown has been a huge part of my journey.

Peace

[Emmeline II]

There are a few threads I found in a search http://www.mothering.com/community/search.php?search=downsyndrome&containingforum[]=157&output=all&action=disp. I don't think any answer your specific question but there are some site referrals like these:

http://www.downsyn.com/resources.php

www.kellehampton.com

[Piglet68]

I would recommend getting in touch with your local LLL group. Down syndrome babies can have special issues with nursing and chances are the mainstream health professionals are not going to be aware of them or know how to help you. And after being in the NICU I'm guessing breastfeeding has gotten off to a rough start already...? Anyways, LLL has information on nursing DS babies. HTH!

[beachcomber]

Congratulations on the birth of your son and welcome!

[askew]

Congratulations on the birth of your son. My DD just turned two, and she has a chromosome disorder as well. They compare her syndrome to Down syndrome a lot. My best advice is not to overwhelm yourself. You have a little time to get in the groove. Soon you will be very scheduled. We started therapy at 21 days. We do Feldenkrais PT, OT, Speech, as well as a home program designed by www.nacd.org. I am a "do-er" by nature and I needed to fill my schedule like that to not feel overwhelmed by having a SN child. (we had no idea before birth either and DD spent 10 days in the NICU) It's a long process, so allow yourself to feel whatever you feel. If it is loving and positive or even horrible. I had a lot oh horrible when DD was young. If I could have find a way to give her back, I would have. My husband was the polar opposite. Pure acceptance and unconditional love from day one. It's been a journey, and she is a wonderful little soul and the perfect addition to our family. 

[mamahen2coop]

thanks mamas!
We actually are doing really great with breastfeeding, with the aide of a nipple shield. But I am going to take your advice and contact our LLL because I would really like to get rid of it if at all possible.
And I haven't even looked into therapies and all that yet. I guess I should start to get on that. We just got back from visiting his ped and she made a referral to a trisomy 21 clinic so I think that will be my starting point.
It definitely took me a few days to adjust. I pretty much cried for 2-3 days straight wondering how this could happen to us. It definitely did not fit in our life plans and it was hard to let go of that vision. I'm sure there will be more tears to come as he starts to become himself. I'm sure it will make our family stronger and he will be the light of our lives, but for me it didn't start out that way.
Here's a link to my birth story and some pictures.

[Linda on the move]

I just read your story. I cannot believe how much you guys have already been through and he just got here. You are a beautiful, strong woman.

Here is a link to an article that been around for a while on the odd feeling of having planned something very different for you life.  It compares having a special needs child to planning vacation, but ending up on a different one.

http://www.specialkidstoday.com/articles/essays/welcome-to-holland-4719/

I wish you peace

[jtkkmom]

Congratulations on your new baby boy!  I have a dd with DS who just turned 4.

I think the most important thing is to remember that he is only going to be a baby for a short time, just like any other.  Take time to cuddle & enjoy the baby days.

Having said that, we were pretty active with trying to stimulate our dd.  In fact, she was reading words & knew her alphabet before age 2 & could read books by 3.5 years.  Of course, we started out with simpler things.  Here is a blog post that I did on the subject;

http://downsyndromeupupupandaway.blogspot.com/2011/04/baby-days-how-can-you-stimulate-newborn.html

Here is a link to some videos of her reading:

At age 2 -  http://downsyndromeupupupandaway.blogspot.com/2011/02/onto-words.html

At age 3.5 -  http://downsyndromeupupupandaway.blogspot.com/2011/05/new-video-of-k-reading.html

Sign language was very helpful to our daughter before she became verbal enough to quit signing in favor of spoken language at age 3.

http://downsyndromeupupupandaway.blogspot.com/2011/02/my-views-on-sign-language.html

Here is a link to another forum that has many moms that will probably be very helpful to you:

http://community.babycenter.com/groups/a315/down_syndrome

Hope this helps.  If you have any questions or are looking for specific things, please let me know:)

[jtkkmom]

Congratulations on your new baby boy!  I have a dd with DS who just turned 4.

I think the most important thing is to remember that he is only going to be a baby for a short time, just like any other.  Take time to cuddle & enjoy the baby days.

Having said that, we were pretty active with trying to stimulate our dd.  In fact, she was reading words & knew her alphabet before age 2 & could read books by 3.5 years.  Of course, we started out with simpler things.  Here is a blog post that I did on the subject;

http://downsyndromeupupupandaway.blogspot.com/2011/04/baby-days-how-can-you-stimulate-newborn.html

Here is a link to some videos of her reading:

At age 2 -  http://downsyndromeupupupandaway.blogspot.com/2011/02/onto-words.html

At age 3.5 -  http://downsyndromeupupupandaway.blogspot.com/2011/05/new-video-of-k-reading.html

Sign language was very helpful to our daughter before she became verbal enough to quit signing in favor of spoken language at age 3.

http://downsyndromeupupupandaway.blogspot.com/2011/02/my-views-on-sign-language.html

Here is a link to another forum that has many moms that will probably be very helpful to you:

http://community.babycenter.com/groups/a315/down_syndrome

Hope this helps.  If you have any questions or are looking for specific things, please let me know:)

[beachcomber]

I'm sure there will be more tears to come as he starts to become himself. I'm sure it will make our family stronger and he will be the light of our lives, but for me it didn't start out that way.

There will be more tears. Hugs to you on that, Mama. When your child is born, you have a lot of dreams and unspoken plans. If they're born SN, then many of those dreams come crashing down around you. But he will bring you special love and unique things all of his own. Those things you will cherish.

Yes, this will make you stronger as a family. You will become an advocate for him and probably for T-21 as well. Your love will turn you into a beacon of hope and that's a very good thing.

[BeautyforAshes]

Congratulations on the birth of your son!  My dd is 2.5 yrs old, and was born with DS and a severe heart defect, neither of which we knew about beforehand.  It was a terrible shock and a very difficult time.  Just know that anything you might be feeling is OK and nothing to feel guilty about.  Glad that the nursing is going well.  I would recommend the book "Babies with Down Syndrome", which you may have been given.  It's a good overview of what to expect, although you don't need to read it all right now!   It's easy to get overwhelmed with all the new stuff coming at you.  Things will get easier when you start to know him as HIM, and not a diagnosis.  Just enjoy his lovely "babyness" for now--there's time for everything else later.  I would MOST strongly recommend that you check out downsyn.com.  It's an amazing forum for information and support--it has helped me tremendously.  Let me know if there's anything else I can do-- 

[Arete]

Welcome to you and your new sweet babe!  My little guy has DS (we found out at his birth, too) and has just turned one.  He is the most amazing and precious child I could ever have imagined.  I am thrilled to hear you are doing well with breastfeeding; for bonding it is the best.  It is certainly what got me through those rough first few weeks, and now he is SUCH a fan, he would say he intends to live on it forever.  I credit it too with the fact that despite his narrow ear canals, we've had 0 ear infections since birth.  Resources: there's a marvelous article on this site called "Enjoying My Daughter with Down Syndrome" that I highly recommend.  In it she mentions cranio-sacral massage.  I VERY MUCH recommend looking into this--it has made a world of difference to me guy.  I am also very fond of the "15 Things a New Parent Should Know" on this site: http://einstein-syndrome.com/2009/04/11/top-15-things-a-new-parent-should-know/  Finally, please (easier said than done, I know) try not to psych yourself out thinking about future issues. This past year has taught me to take all the joy from every present moment (and it is a lot!) and, aside from necessary planning, not care a straw about the future.  Please feel free to PM me if you care to. hugs, mary

[Arete]

Just occurred to me: this will sound very random (total stranger talking here) but we are about to go on a vacation to the Puget Sound area and will be in Poulsbo one day for sure.  If you are remotely interested in getting out for a cup of tea/coffee and meeting a stellar little guy, I would be more than happy to oblige.  Please do not feel awkward saying heck no, ms. overly enthusiastic stranger!   

[yansmommy]

Congratulations!!!  Your little boy is absolutely beautiful!!  I adopted my little girl with DS and she is the most amazing blessing.  Take time to enjoy him right now.  Remember, as you talk to doctors, therapists or others-no one can tell you what his future will look like.  They have never met someone just like him and don't know all the love and support that he will have throughout his life. He alone will pave his own way.  

I'm here if you ever want to talk.  I'm also a Pediatric Speech-Language Pathologist if I can ever help with any issues about speech, language and hearing.

Jenn

[mamahen2coop]

Originally Posted by yansmommy 

Congratulations!!!  Your little boy is absolutely beautiful!!  I adopted my little girl with DS and she is the most amazing blessing.  Take time to enjoy him right now.  Remember, as you talk to doctors, therapists or others-no one can tell you what his future will look like.  They have never met someone just like him and don't know all the love and support that he will have throughout his life. He alone will pave his own way.  

I'm here if you ever want to talk.  I'm also a Pediatric Speech-Language Pathologist if I can ever help with any issues about speech, language and hearing.

Jenn

Thank you. It's good to hear things like that. I'm still adjusting to his diagnosis I think. We had our first appt with the neurodevelopmental clinic and it was pretty uneventful. She said he has good tone (he does!) and since he's feeding well she didn't have much else to add except she did give us an updated version of the care plan, which just came out at the end of July. We'll follow up there in 3 months. I'm not really sure what the purpose of those visits are going to be though.
We're doing pretty good, I mean I love him and we're bonding. But sometimes I find myself thinking about the future and the what ifs. I feel differently about him than I remember feeling about DS1 but I wonder if its because he's the second. I am just enjoying him now and hoping he forgives me for having to drag him around while we chase DS1!! He's breastfeeding very well and I'm grateful for that. He looks good in gray. I'm not sure how DH is doing because he's not a talker but he seems to be doing well too. He's accepted it as just what is from day one. He loves him too and is very good with him.

[mamahen2coop]

Originally Posted by Arete 

Just occurred to me: this will sound very random (total stranger talking here) but we are about to go on a vacation to the Puget Sound area and will be in Poulsbo one day for sure.  If you are remotely interested in getting out for a cup of tea/coffee and meeting a stellar little guy, I would be more than happy to oblige.  Please do not feel awkward saying heck no, ms. overly enthusiastic stranger!   

I'd love to meet up!! just PM me when you're heading this way!

[AbbieB]

Congratulations!

My son has Ds too, he will be 4 next month.

All I can say is to be kind to yourself, allow your self to process your feelings, and love your beautiful baby. The hurt, the worry, the tears will lesson and fade. Skin to skin contact can help that process along.

Finding out my son had Ds right after birth, when in that just-gave-birth haze, was one of the most excruciatingly painful things that has ever happened to me. On the flip side, my son has given me some of the most brilliantly joyful moments of my life. I can't imagine how my life would be without him, certainly not as rich and joyful.

[mamahen2coop]

Originally Posted by AbbieB 

Congratulations!

My son has Ds too, he will be 4 next month.

All I can say is to be kind to yourself, allow your self to process your feelings, and love your beautiful baby. The hurt, the worry, the tears will lesson and fade. Skin to skin contact can help that process along.

Finding out my son had Ds right after birth, when in that just-gave-birth haze, was one of the most excruciatingly painful things that has ever happened to me. On the flip side, my son has given me some of the most brilliantly joyful moments of my life. I can't imagine how my life would be without him, certainly not as rich and joyful.

I knew right away when I met him. I was good at first, that first hour or so we were in the tub, laying out in the sun waiting for the placenta etc. Then I gave him to DH to hold while I got up to the bathroom and shower and it was while DH was holding him that DS2 started having the respiratory problems that earned him a life flight and 12 days in the NICU. Once he started doing that and we called the ambulance to take us to the hospital, I didn't even want to hold him. It was strange. I was crying and concerned and overwhelmed but also felt very distant like he wasn't mine almost. I felt that way for a few days, cried off and on all day long for at least the first 2. I knew that it was just who he was going to be, but since it was a complete surprise and not, obviously, what we were expecting, I just felt really odd about him but at the same time was with him 24/7 and as involved as I could have been. I'm still having thoughts and feelings that I think I might not have toward him if he were typical, but I'm assuming that it's just part of the process. I started reading the Kelle Hampton blog and I felt just like she said in her birth story. I felt in a daze yet everyone else was instantly in love with him and ready to learn right along side him. Maybe because it wasn't their dream that just took a sudden right turn. I'm lucky to have friends and family that are so loving and involved. I am anticipating that he will make our lives, too, more rich and joyful, I just need to let it happen. Everything is going well so far really. I'm so so grateful that besides his initial respiratory distress he is healthy and thriving. He has no heart defects, both newborn screens were negative for thyroid problems, and everyone remarks how strong he is, even without knowing his diagnosis. He might have been a David instead of a Dean but David seemed like a name for someone who eats their peas and does what their mama says. Dean seems like the kid who might feed his peas to the dog and nod. He gained over a pound in the past week (piglet+mamas Eagle brand milk!) and seems to be thriving. And big brother just loves him. I have so much to be grateful for, we got what we wanted- a healthy baby who we love so much we gave a little extra something.

[douladianne]

This post is beautifully written, Jenica...Such honest, raw feelings and unconditional love!