Anybody have a baby with Down's?

[JustMoi]

My SIL is pregnant and due to give birth in June. The baby is a girl, and they already know she will have Down's. They also have a 2 year old son.

Any insight on what to expect? Particular things that helped you cope?

TIA :)

[Sputterduck]

There is one lady here... but I can't remember her name. I'm sure someone will. She has the cutest little girl.

[JudyJudyJudy]

SueDid. Keep this bumped for her.

[JustMoi]

Bumped :)

[MiMi_of_4]

I'm sure SueDid will be able to give you a lot of information about kids with Down Syndrome. Much luck to your SIL with her new baby.

[SueDid]

Hi :)

Ruthie was given ultrasounds of her heart, kidneys and liver (I think it was those, it was 4 years ago) as these can be problem areas for kids with DS. She was in the special care nursery because she was on oxygen, she was born very early Tuesday morning (1:30am) and her lungs had strengthened enough to be off oxygen by the following weekend and she was able to come home Sunday afternoon.

A friend brought me books from the library on DS and honestly I was glad I didn't read them until after she was born. They generally paint a more ominious picture than is reality these days for most kids with DS. There is a laundry list of possible issues they can have, most only have a few of them, though.

We had her by emergency c/s and when they wouldn't tell me anything about her when I cam e to so I thought she'd died. When I found out I had a girl, and she had Down Syndrome, I was so grateful she was still alive that I knew we could handle anything that came along.

I cannot even begin to express the amount of joy she's brought to our whole family.

Are there any specific questions you have?

There are lots of pictures of Ruthie on my blog http://quiltingchatter.blogspot.com/

[Meredith]

She is so beautiful, Suedid. :)

I don't have a child with Down Syndrome, but I've always found John C. McGinley (http://www.johncmcginley.com/main.html) to be such an inspiration and encouragement. ETA: Here's a cute video (http://ndss.yorkandchapel.com/index.php?option=com_content&view=article&id=230:buddy-walk-psa-2008-john-mcginley-video&catid=74:video) of him and his son. For the uninitiated, he's Dr. Cox on Scrubs. He has a son with DS, and he's very vocal about it. He's one of the celebrity spokespeople for the National Down Syndrome Society (http://www.ndss.org/).

Dr. Sears (both of them) is also. Dr. Sears, the elder, has a son with DS.

Best of luck to your SIL!

[JustMoi]

Oh, Sue, she's gorgeous :)

My SIL and her husband knew that the risk of having a child with DS was higher given the maternal age (she'll be 41 when she delivers). She's known since early in the pregnancy, and that was deliberate - she wanted to have the opportunity to learn all that she could beforehand.

SIL intends to homeschool, and will be a SAHM once this baby arrives.

We understand that she will likely be developmentally slower than average (including many milestones), may be at higher risk for certain illnesses/conditions, and will likely be of a smaller than average size.

Was Ruthie full term? Is SIL likely to give birth early? is there any reason to suspect that she will need a c-section rather than have a vaginal birth? (Her DS was a vaginal birth so it wouldn't be a VBAC)

[SueDid]

Thanks, Meredith. :)

One of the things I was going to mention in my other post is something I read in one of the first pages of the books that I read. It said that kids with Down Syndrome are more LIKE other kids than they are different from them. It is very likely that they will play, walk, talk, read, and write. It just takes them a little longer to figure it all out and they need a little more help getting there.

The main thing is to enjoy the baby as you would any other baby. I did the same things I did with all of my other kids. What was different about her is that instead of just reaching the milestones mostly on her own like the other kids, we had to be more deliberate with her. If I was busy cleaning a room or cooking and she was in a seat or on the floor, one of the girls often came in and sat with Ruthie between their legs so she could practice sitting up. We'd prop her up on her hands and knees when she was strong enough so she could see what to do, we'd move her arms and legs so she could see and feel what came next. It took her longer to learn things, but she did.

Milestones with kids are always really fun to reach, but with a special needs child each one is a special victory. The sheer joy on Ruthie's face each time she makes her potty sing is just priceless. The laughter that bubbles out of her when she realizes she figured out something new, or does something that causes an unexpected result would make the most staunch individual smile.

I think the hardest thing for me is that she is a total people magnet. That's been quite disconcerting for her wallflower mama because I know anywhere we go that total strangers will come up to us to talk to her or to me.

[SueDid]

Hi, JustMoi, you posted while I was writing.

First off, thank you, we think she's beautiful, too!

We homeschool, also, and chose to forgo early childhood services for Ruthie unless we felt she wasn't progressing and we needed help to get her going. I talked with someone from the county and they were totally supportive of that, we've not been at all disappointed with our choice to work with her ourselves.

Ruthie was born only 5 days before her due date, and I was induced because of a poor biophysical profile. They did a trial of labor and she wasn't tolerating it well, so we had the c/s, I don't think there is any reason that your sil couldn't deliver vaginally.

Ruthie was 6lb 9oz at birth. She was the smallest of my babies, Joshua (oldest) was 7lb 1oz and born 16 days early, the next 3 were all within an ounce or two of 8 pounds and Lucas was 8lb 15oz. She was a full 2 1/2 pounds less than Lucas, she seemed so small!

She's still small, at coming up on 4 1/2 she's still wearing a size 6-7 shoe. She does wear 3T-4T clothing, but the sleeves and pant legs are sometimes too long. Most of the 2 year olds we know are passing her up in height.

I think their immune systems can sometimes be a bit weaker, making them more susceptible to illness, and that simple colds can often cause ear and/or respiratory infections because of smaller than normal bronchial tubes and ear canals.

Ruthie has been the healthiest of our six kids, never having been to the doctor for being sick. I'm sure part of that is because we homeschool and she just generally has less exposure because of it. She's had a couple of hefty colds, though, and has fought them off without incident, so we've been really pleased about that.

[HammBugga]

Sue- your dd is so adorable. I am in awe over your quilts and I need the recipe for that trifle.

[Bellaelle]

I adore Ruthie!! Sue is right, children with DS are very,very similar to children without it. They just need to be engaged and given time to hit a milestone.
Please keep us posted on the baby once she is born!

[ima062002]

A very good friend of mine has a girl with DS, who is 13 now. When I asked my friend what she would say she made a point of saying that DS is a syndrome, meaning that there are several symptoms that often occur together. Her dd for instance has issues with frequent ear infections, low muscle tone that requires PT, a tendency to gain weight if she doesn't watch her diet meticulously and other issues that need constant monitoring and more frequent doctor visits. So SIL should be prepared to having to monitor and treat her baby more often than a baby without DS.

My friend isn't home schooling her child but she is in a regular school with an aide. My friend fought very hard to make that happen and she unfortunately faces a lot of opposition in the school, which manifests itself mostly with a bad attitude of everybody involved. She encourages her dd to be her best and she is even bi-lingual (although English is her strong language).

While she does worry what will happen to her dd later on when mom and dad are gone, she has two older sons (they are 10 years plus older) who adore their little sister and will take good care of her. I think that thinking and planning ahead, especially if the parents are older, is a good idea - although that is not something that might need taking care right now :).

[SueDid]

Thanks, everyone! :)

Hamm, I'm just about finished with the binding on the ring quilt, it will be done in a few minutes. I'm SO excited.

The trifle is easy peasy. No recipe really, I just make a box cake mix and cube it up. I like using a jelly roll pan because it's easier to cut into small cubes but have also used a regular 9 x 13 pan.

The bottom layer would be cubes of cake, the next layer pudding, then some fruit or chopped candy, then cool whip. I have a smaller bowl that I sometimes use, it will hold two layers of each, the punch bowl (which was the one in that picture) holds 3 layers.

We've done chocolate cherry (chocolate cake, chocolate pudding, cherry pie filling and cool whip), Chocolate Coma Trifle (chocolate cake, chocolate pudding, chopped chocolate candy (or chocolate chips) with drizzles of chocolate sauce here and there and cool whip, Caramel Chocolate (chocolate or caramel flavored cake, chocolate or butterscotch pudding, drizzles of chocolate and caramel sauce, bits of chopped chocolate toffee candy, and cool whip)

You can do them with vanilla cake and pudding and either peaches or any kind of berries along with the cool whip. Chocolate and banana is good, too.

Have fun!

[JudyJudyJudy]

Sue, all of your children are gorgeous. :)

[Meredith]

Thanks, Meredith. :)

One of the things I was going to mention in my other post is something I read in one of the first pages of the books that I read. It said that kids with Down Syndrome are more LIKE other kids than they are different from them. It is very likely that they will play, walk, talk, read, and write. It just takes them a little longer to figure it all out and they need a little more help getting there.


That is so true. I have two cousins with Down Syndrome, and my brother went to a special needs school with a lot of children with DS. One girl, in particular, was so sweet and outgoing, always asking me questions and chatting with me. Her brother, who also has DS, graduated college not long ago. :)

[Still_Tbog]

SueDid--I swear Ruthie has the most beautiful smile. It is like her heart shows when she smiles. :)

[SueDid]

Thanks, Judy, it still stuns me sometimes when I see them across a room or engaged with friends and I wonder how in the world these wonderful people came from me.

and thanks to you, too, tbog, I have a friend who says her smile lights up a whole room.

Meredith, right now speech is Ruthie's most noticeable delay, but she's learning new words every day. I know one of these days she'll be a chatterbox, too, and all the kids' friends and our church friends who have worked so hard to engage with her will wonder what they've gotten themselves into, LOL.

[JillyG]

Emily, my middle child..she's going to be NINE in May, I can't even believe how the time has flown!
I didn't know she had DS until she was born and it was a real shock for us, in spite of the fact that I had a "feeling" that she did during my pregnancy.

Emily received so much therapy as an infant and young child - we loaded her up with everything the early intervention program had to offer and it was a lot of work for her but also a lot of fun. Aside from that, we have always treated her like any other child. She's sandwiched between two close in age siblings and she has developed close, loving relationships with both of them.
In the beginning it was easy to fall into that trap of focusing on her limitations. As she has grown we've learned that she is not even aware of them (did she not read "the book?" LOL) and that's such a good thing - she is determined and capable of things that would have been written off for her had we not let go of that attitude.
I could talk all day about her ....but Suedid pretty much covered what I would say anyway...
here are some pics of my girly over the years..
http://i69.photobucket.com/albums/i66/jillgif/drewinternationalfestival0508020.jpg

http://i69.photobucket.com/albums/i66/jillgif/image42.jpg

http://i69.photobucket.com/albums/i66/jillgif/image74.jpg

http://i69.photobucket.com/albums/i66/jillgif/deck029.jpg

[JillyG]

http://i69.photobucket.com/albums/i66/jillgif/DSC00182-3.jpg
most recent:
http://i69.photobucket.com/albums/i66/jillgif/P1000388.jpg

[JillyG]

You are SO RIGHT about those *horrible* books. The one I was given in the hospital was so outdated! I remember crying my eyes out reading it. It had chapter upon chapter about "letting go" and putting the baby in an intstitution. I couldn't believe my eyes. I am pretty sure they are no longer giving that book out - I notified them by letter and also had our local support group contact the hospital to tell them to throw it the heck out!

When I had Emily they laid her on my chest and left the room so fast your head could spin. The lone nurse left to clean up didn't say a word, either. My husband and I were sobbing, and I cried out "isnt' anyone going to say anything about my baby having DOWN SYNDROME?" and the nurse came over to my bedside and held my hands, and very quietly said "We need to get a pedicatrician for that, we're not allowed to address it, but honey, I see what you see" and she walked out. It was agonizing, waiting for that ped.
When he came and assessed her, he told us it would be 10 days to 2 weeks for the genetic test to come back and in the meantime "don't worry." WTF?
LOL anyway, my point is that even though I absolutely loved her from the start, I don't think you can really know how you will "handle" the reality of it. I was scared to death - my husband was quietly in denial...but we both snapped out of it when "real life" took over once we took our beautiful baby home. :)
I think SO MUCH has to change in how the medical establishment "handles" the issues involved with Down Syndrome. I've had doctors make comments like "well, she DOES have Down Syndrome" as if that means I am supposed to just accept that she has "x" like when she had seizures as a baby...I mean DUH ok I get that, but NOW what do we do?
Oh well...as she's gotten older her issues have changed - these days she's medically VERY healthy but we're dealing with her stubborn streak LOL...but she's SO bright, and so social, and so fun...she does bring joy to our lives - more than I could have ever imagined in those early days...

[JillyG]

...
Meredith, right now speech is Ruthie's most noticeable delay, but she's learning new words every day. I know one of these days she'll be a chatterbox, too, and all the kids' friends and our church friends who have worked so hard to engage with her will wonder what they've gotten themselves into, LOL.

she has a LOT to say - but she talks super fast and is somewhat lazy with pronunciation. Speech is hard work for her so it's easier sometimes to just blitz through carelessly, but when she takes her time it's all there. Her vocabulary has absolutely BOOMED in the last year, and sometimes it's hard to remember those "wishing" days before it all clicked. She is all talk, all the time now. :p

[JillyG]

www.bandofangels.com

it's a beautiful website full of all kinds of "outreach" stuff. Their "Beautiful Faces" calendar is absolutely gorgeous and I have proudly had it on my wall every year since my daughter was born. I give it as gifts, too. And their notecards are adorable.

They sell a book called "Hi I'm Ben and I Have a Secret" which is a simple little book that has done wonders to help other kids "get" Emily. I have given a copy to her teachers every year, to read to the class.
There is also a book called "Common Threads" that is a must have for your SIL. It's full of beautiful stories about the accomplishments of children and young adults with Down Syndrome.

[EvilAmy]

Suedid and JillyG you're amazing moms. We have two people Down's syndrome here in town. One I grew up with (L, she's a couple years younger than me), her mom was the best. She would have said the same thing as y'all. Her mom hired me last year to help her paint some areas in her house. L and I talked and talked while we painted, mom ended up having to take care of some business. L wanted to help and while I did the cutting in around the trim L painted away. Mom came in and was worried about me thinking that L might be in my way and having an accident with the paint. I told her that L was doing great work there wasn't a spot missed by her and we were having a grand old time. Her mom got a bit teary-eyed and told me she appreciated the fact that I saw her just like I saw anyone else and that it can be hard dealing with people that view her as being less able.

[Maret00]

I have a coworker who's daughter has down's she has had some other medical stuff also but she has started a web page called Downrightbeautiful.org it is for information and has storied and other interiesting things about downs. She would love anyone to go to her site and learn or share. She also pumped for 2 YEARS! since her daughter could nurse. I tip my hat to her for that one.:p

[JillyG]

TWO YEARS? Wow. That's devotion. I only pumped for 10 mos because my dd was unable to nurse and I thought that was hard!

I have a coworker who's daughter has down's she has had some other medical stuff also but she has started a web page called Downrightbeautiful.org it is for information and has storied and other interiesting things about downs. She would love anyone to go to her site and learn or share. She also pumped for 2 YEARS! since her daughter could nurse. I tip my hat to her for that one.:p

[JustMoi]

I know SIL won't be able to nurse because of some meds she is on... she's really struggled with infertility and had other issues too. I'm going to give her the links you all have suggested. :)

[JudyJudyJudy]

Jilly, Emily is beautiful! :)

[MrsKitty]

Thanks so much for that link Maret! I have read about half the website now. It is fantastic.

[SueDid]

JillyG, Emily is just beautiful. The black and white one of her smiling made me smile, too, her bottom teeth are JUST like Ruthie's and she makes that exact same face sometimes.

It's exciting for me to hear how much Emily's speech has exploded in the last year or so, I've read that many kids have their speech blossom between the ages of 6 and 8.

JustMoi, I have 3 books that I bought off of Amazon that might interest your sil. They are "Gross Motor Skills in Children with Down Syndrome", "Fine Motor Skills in Children with Down Syndrome", and "Early Communication Skills in Children with Down Syndrome."

One nice thing about them is they show the progression of skills, have ideas to help them from one to the other, and just generally are very positive and informative books.

They also have "Teaching Reading to Children with Down Syndrome" and "Teaching Math to Children with Down Syndrome" both of which I'm buying this fall when I get the other kids' school books.

JillyG, Ruthie's words are usually missing either the beginning or ending consonants right now, but she's been able to pronounce all the letter sounds and is now doing several of the combined letter sounds (like "sh") We've noticed that as new words are added, old words are becoming clearer. Where "daddy" used to be really slurred and she barely hit on the "d"s in the middle, she's now very deliberate about saying them so we're really excited about that.

[Flutterby]

Sue, your quilts are amazing and Ruthie is just gorgeous :)

[SueDid]

Thanks, Flutterby!

[SemperGumby]

Beautiful children, ladies! It warms my heart to see them and read about them. Our son Duncan passed away at 35 weeks due to serious complications with Ds. :( I knew he had Ds the moment I saw him, but didn't want to jump conclusions too soon. I just knew, though. For a few months it was hard for me to look at pictures of other Ds babies because mine didn't make it. He was beautiful and precious. The doctor said he was "worst case scenario" as far as complications go.

We're expecting again, Dec 31st, Duncan was due Dec 21st. I'm trying to remain positive and optimistic. We'd welcome another Ds baby into our life, our only hope is that he/she not have so many complications. A living, breathing baby is what we desire most.

[MiMi_of_4]

Semper, I'm so glad to see you, honey! Congratulations on your pregnancy!

[MiMi_of_4]

SueDid and Jilly, Ruthie and Emily are BEAUTIFUL!!!! When I student taught, my favorite kids were the ones with Down...smile...

[tata]

I'll admit that I'm attracted to people in general - but kids especially - with Down's Syndrome. They are the kindest and most joy-filled folks I've ever had the pleasure to encounter. :)

SueDid, I subscribed to your blog. I'd love to hear how Ruthie is progressing and am in complete awe of your mad quilting skills.

JillyG, your Emily is just beautiful.

Semper, I'm so sorry for your loss :hug: Keeping you and your family in my prayers.

[Nipple_nectar]

I, like Semper, lost my little girl to DS and never laid eyes on her, she went to GOD unborn. I do have trouble seeing babies with DS as it triggers my mourning for what could never be..

I wish your SIL lots of courage and strength and to the special mommas with the special babies {{{hugs}}} to you.

[HammBugga]

Congrats semper, I am so happy to hear you are expecting again. I am so sorry for everyone that has lost a precious baby.

[SueDid]

Thanks so much, everyone, for the wonderful comments. Right now, our experiences with Ruthie have all been so positive, but I know that as she grows, society's perception of her may likely be different. I know that I'll be so grateful for those who so clearly show their support rather than their disdain.

Tata, how sweet of you to subscribe to my blog, I usually try to post at least once a week, and always include a Ruthie picture, she has quite a following, LOL. I think if you click on one of the labels (I'll have to go back and add them to todays post, I forgot) that say Ruthie it brings up all the posts with any pictures of her. I also wrote one called "Ruthie's Story" (I think that's the title, LOL) which tells more about our journey with her, if you're interested.

Semper, I'm so sorry for your loss, and so pleased that you're expecting again. I hope everything goes as wonderfully as possible for you and your little one.

NN, I'm also so sorry for your loss, I didn't realize your Amber Rose had DS, I mistakenly thought it was one of the other trisomies.

[Maret00]

Go to Downrightbeautiful.org that is a coworkers page to honor her daughter that has Ds. It can be very insperational and you can email her your story or family stories to put on her page. Sorry to hear how hard it has been for some of you. best of luck.