My friend's daughter was born with Down Syndrome last night

[sahm99]

This is the fifth child of a warm, loving, wonderful family.

 

I called my friend in the hospital this morning to congratulate after the birth. She broke out in tears. I was so helpless and felt so useless. We sobbed together for some minutes.

Dh and I then drove to join her and her husband. We brought flowers and cheered as much as we would have for a healthy baby. It just felt right this way.

My friend does not want much contact with other people, yet. They seem overwhelmed.

I am at a loss about how to help. I am trying to imagine what I would wish a friend to do in this situation...what to say...

 

How much should I "impose" - I don't want to be pushy, but don't want them to hide (her husband said, that imagining the look of other people is almost the worst, right now...)?

What can I possibly do to sooth her pain...?

 

Thanks God, her little girl does not seem to have any major physical problems...

But, she is tiny and very sleepy, and breastfeeding has not worked at all, so far (apart of once, directly after giving birth).

 

Thank you for any help and advice!

[patchfire]

Can you offer to "run interference" between them and other people? No, they shouldn't hide, but neither should they have to put on a happy-everything-is-perfect face within 48 hours.

 

I'd also offer to track down resources that they request - support groups, an IBCLC with experience helping babies with Down Syndrome nurse, that kind of thing.

Edited March 12, 2010 by patchfire

[Melinda in VT]

Given what you said here:

 

How much should I "impose" - I don't want to be pushy, but don't want them to hide (her husband said, that imagining the look of other people is almost the worst, right now...)?

What can I possibly do to sooth her pain...?

 

I would ask them if they would like you to spread the word so they don't need to break the news to each person they know. I'm thinking if you told a couple of people at church, a couple of neighbors, a couple of people in the homeschooling group, etc., then your friend and her DH wouldn't need to watch everyone's initial reactions.

 

Just a thought. I'd ask them first.

[4kiddies]

I have a close cousin who had a child with down syndrome three years ago. I think for her it was important to mourn the life that she had *thought* he would have, ie. marriage, children etc.

 

Just be there for them and let them rejoice in their new life, grieve the life they thought that child would have and deal with the shock.

[delaney]

I am not sure what to say. There are many health complications that can occur so if they are clear of those they need to find some hope in that. My friend's little boy was born with Down's and he has few complications and the health dept has been working with him from 3 weeks on many areas! His progress has been amazing. Just cherish and love her like any other child and give her lots of hugs:)

[3littlekeets]

Say CONGRATULATIONS wildly and Sincerely!!!!

 

 

I have a child with down syndrome!!!! Trust me...that's what we miss out on!! There is an awesome book called Gifts... I have to run out for an hour, but check out my blog http://www.missmagic.blogspot.com and I"ll provide you tons of information.

 

DS isn't a curse or a burden....it just make a take a while to see it that way ;-)

 

edited: also check out http://www.ndsccenter.org and ndss.org

 

Whatever you do - DO NOT say "I'm sorry!!!!"

[sheryl]

This is the fifth child of a warm, loving, wonderful family.

 

I called my friend in the hospital this morning to congratulate after the birth. She broke out in tears. I was so helpless and felt so useless. We sobbed together for some minutes.

Dh and I then drove to join her and her husband. We brought flowers and cheered as much as we would have for a healthy baby. It just felt right this way.

My friend does not want much contact with other people, yet. They seem overwhelmed.

I am at a loss about how to help. I am trying to imagine what I would wish a friend to do in this situation...what to say...

 

How much should I "impose" - I don't want to be pushy, but don't want them to hide (her husband said, that imagining the look of other people is almost the worst, right now...)?

What can I possibly do to sooth her pain...?

 

Thanks God, her little girl does not seem to have any major physical problems...

But, she is tiny and very sleepy, and breastfeeding has not worked at all, so far (apart of once, directly after giving birth).

 

Thank you for any help and advice!

 

 

You may want to post on the special needs board and ask for opinions there too. Well, no doubt the family will be working with specialists to assist this little girl as she grows. You know, there is a stigma in the world....s/he looks different....whether iit's dwarfism, downs, obese or whatever. We all want to be perfect, but such is not the case. Even people who "look" normal can be epileptic, diabetic, etc.

 

My daughter has controlled epilepsy and PTL for 2 + years has been seizure free.

 

Celebrate the joys of this baby....celebrate her accomplishments as you would any child. Try not to focus on the negative, but be optimistic.

 

From what I understand there are varying "degrees" of downs. Years ago there was a tv show about a family and the son had downs. In real life this young man was "high functioning" downs.

 

Yes, they are in a state of shock or whatnot now, but as they receive information and knowledge then perhaps they will use those strategies they've learned and it won't seem so bleak.

 

:grouphug::grouphug:

[Dani n Monies Mom]

As the parent of a special needs child, though not downs, I agree that a mourning period is important, it certainly was for me. I read an essay whose author was autistic, and he said that because his parents didn't mourn the child they thought he would be, they were unable to fully embrace the person he was. It hurt him to go through that; it was quite a wonderful essay to read when my child was still very young.

 

I'm not sure I would necessarily tell them to mourn, in so many words (you know them best), but allow them the freedom to have those feelings in a very accepting, encouraging and sympathetic environment. Maybe even protect them from those who feel like they just need to move on and get on with life. That part will come without others pushing it on them, maybe sooner than later.

 

I also felt a great deal of guilt in regards to my dd's special needs. I just knew it was my fault, something I had or had not done during birth or early infancy. Perhaps later, when they are ready (I wasn't ready and didn't 'hear' this until my dd was 9yrs old, at which point it changed me in a very profound way) You can share John 9:1-3. God's amazing glory has been shown in astounding ways in our life.

 

How could I forget to add, Congratulations to your friend!!!

God Bless,

Ava

 

Wanted to add that my bil has downs and he now works in the mayors office, and has a very active social life and a girlfriend. He is not, and has never been shy, he grew up in a household with a total of 4 siblings.

Edited March 11, 2010 by Dani n Monies Mom

[creekmom]

A friend of mine had a Down's baby as their second child, and she told me that little girl has been the most unexpected blessing! When she was pregnant with her third, her oldest said, "Will this baby have Down's too? I hope so!" The mom told me that their Down's child is so happy and carefree and that (although she would have never said this before the Down's child) if God were giving people the option of whether or not to have a baby with Down's, she would be the first in line. She had 2 more children, and neither were born with Down's BTW. I know the parents are grieving right now, and I think they need know that it's OK to be disappointed, angry, and mournful of the child they might have had instead. (I would imagine that most parents feel a lot of guilt about the sadness and anger over their own baby.) But, they should also know that this child might just turn out to be the biggest blessing of their lives.

[Jodi-FL]

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

 

and then catch up on the rest of that blog.

 

and give her time to grieve, keep checking on her, running interference with others is good. take the other kids or just go to their house and play games/do wash/clean the house.... whatever lets her know that you're there

[Teachaheart]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

[Tidbits of Learning]

I have a friend who has a son with Down's. I didn't know her when she gave birth to him. I met her later when he was around 4. She didn't know that he was going to have Down's either. What she said was hard was the dr.'s and such telling her at the time that she found out he had down's of all the things he "may" never do. They really didn't have anything positive to say just a list of the possible negatives.

I know she said she went into hiding (so to speak) for a little while after that, but she did recover. I agree with the pp that said they may grieve for the life they had envisioned for this child. They may not want a lot of people around for a while. I would give them space if they ask for it.

There is a joy that children with Down's bring just by being in their presence. They always have an air of childhood innocence to them. Your friends have likely been overwhelmed by dr.'s that have to prepare them for the what if's. Give them time.

[homeschoolally]

Can you offer to "run interference" between them and other people? No, they shouldn't hide, but neither should they have to put on a happy-everything-is-perfect face within 48 hours.

 

 

:iagree: I think this would be a great way to help. You sound like a wonderful friend.

[4kiddies]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

That blog was absolutely beautiful!

[3littlekeets]

Gosh.... I don't know how to say this politely, so I'll just say it.

 

The responses here reflect the problems many people have with the messages people get when they have a child with Trisomy 21. That is NOT to blame people...before we had our daughter, we didn't know anything either.

 

1. There are NOT varying degrees of down syndrome any more than there are varying degrees of "typically developing" children. The terms high and low functioning are offensive to people who have children with Down syndrome.

 

2. They are children WITH DS, not "down syndrome children" or "down's" and they are NOT special or sweet or kind -- those are stereotypes just like asian people are good at math or black people are good dancers. Just because they "seem" positive doesn't make them any less stereotypical!

 

3. Yes, most people mourn the loss of their dreams of a typically developing child, but they don't need another person to point that out. You can say, "Your baby is gorgeous. This seems like a shock to you. What can I do to help you out? " Help them gather POSITIVE information, like the book GIFTS, or the NDSC new parent package. Help them connect with other parents who have chromosomally enhanced children.

 

Find cute clothes on etsy that have sayings like "my child has more chromosomes that yours," or "my child wears designer genes" that put the extra 21st chromosome in a positive light! It won't be long before they are putting those items on their baby with PRIDE!

 

And, this poem is quite popular in the T21 community:

 

WELCOME TO HOLLAND -- 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."

 

 

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.

____ _____

 

Good luck, and PM me. I can give you lots of info and brand new parent blogs, as well!

[Teachin'Mine]

A friend of mine had a Down's baby as their second child, and she told me that little girl has been the most unexpected blessing! When she was pregnant with her third, her oldest said, "Will this baby have Down's too? I hope so!" The mom told me that their Down's child is so happy and carefree and that (although she would have never said this before the Down's child) if God were giving people the option of whether or not to have a baby with Down's, she would be the first in line. She had 2 more children, and neither were born with Down's BTW. I know the parents are grieving right now, and I think they need know that it's OK to be disappointed, angry, and mournful of the child they might have had instead. (I would imagine that most parents feel a lot of guilt about the sadness and anger over their own baby.) But, they should also know that this child might just turn out to be the biggest blessing of their lives.

 

:iagree: This post says exactly what I was going to say! :)

[clementine]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

 

Oh my gosh!!! I just read her birth story & cried. What a way with words (and pictures). Thank you so much for sharing. I hope this new mom reads it sometime - it takes your breath away!

[Denisemomof4]

Say CONGRATULATIONS wildly and Sincerely!!!!

 

 

I have a child with down syndrome!!!! Trust me...that's what we miss out on!! There is an awesome book called Gifts... I have to run out for an hour, but check out my blog http://www.missmagic.blogspot.com and I"ll provide you tons of information.

 

DS isn't a curse or a burden....it just make a take a while to see it that way ;-)

 

edited: also check out http://www.ndsccenter.org and ndss.org

 

Whatever you do - DO NOT say "I'm sorry!!!!"

 

Oh my, your daughter is so absolutely PRECIOUS!!!!! She's just so pretty! Her smile is so absolutely contagious that it brought tears to my eyes!

 

You are truly blessed!!!!!

:grouphug:

[jelbe5]

I have a son with autism. He was not diagnosed until he was 2 1/2 but in those first few years I "knew" something was wrong.

 

I was devastated at first. He is 12 now and a joy. There are still difficult days and struggles . . . but I have those with my 14yog and 10yog who are "neurotypical".

 

There are many supports out there. This is a hard time as there is confusion and disappointment. Is your friend homeschooling? Many homeschool their differently-abled children with great success. The Illinois Christian Home Educators webpage has a wealth of info for the special needs homeschooling parent

 

http://www.iche.org/category/tags/special-needs

 

If there is anyway I can help or encourage your friend I would be pleased and honored. Our son has challenged and strengthened me in ways I never imagined. I am a better person because of him.

 

I just want to offer cyberhugs and encouragement.

 

Adrianne in IL

[sahm99]

Thank you all so much!

 

I feel so blessed to be part of this community.

Just glancing over your messages brought me to tears, and I am looking forward to sitting down in peace, once my kids are in bed tonight, and reading your words of wisdom and compassion.

I am sure, I will find the help and guidance I looked for, to be the friend I want to be...

 

Thank you! Thank you! Thank you!

[MyBlueLobsters]

I also have a son with Down Syndrome (and am actually one of the authors in the book Gifts) If there is anything that you can do it's just to listen to your friend. She's going to need lots of love, support and someone to just listen to her. I had so many emotions when my sweet Logan was born. One moment I was excited, the next I was just so sad. To have a friend who would just listen, hold my hand, and even cry with me was so comforting. At the beginning, I was very reluctant to contact anyone who had a child with DS. However, if she is ever ready to talk to others who have BTDT, feel free to PM me and I'll offer my e-mail addy.

 

If nothing else, just be there when SHE's ready, she will be ready to talk about this in time. Be patient. :grouphug:

[dtsmamtj]

I too have a blessing with DS. She is #5 of 7 and a ray of sunshine everyday. If we can be of some encouragment please let me know.

 

 

T

[LibraryLover]

This link has a part of a documentary linked to it. There is a woman who talks about how her family all came to visit in the hospital and nobody knew what to say or do, and the mother's father said a 'what not to say'. This is an uplifting site, and while the new mother might not be ready for it, it might be a site you keep in the back of your head for her.

 

www.merrymakers.com.au

www.themusicinme.com.au

www.abc.net.au/tv/enoughrope/transcripts/s2267505.htm

 

Edited March 11, 2010 by LibraryLover

[MyBlueLobsters]

This link has a part of a documentary linked to it. There is a woman who talks about how her family all came to visit in the hospital and nobody knew what to say or do, and the mother's father said a 'what not to say'. This is an uplifting site, and while the new mother might not be ready for it, it might be a site you keep in the back of your head for her.

 

www.merrymakers.com.au

www.themusicinme.com.au

 

 

I hadn't seen this! Thanks for sharing!

[i.love.lucy]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

How can I move on and function with my day with all these tears! So beautiful. Words fail me. I hope your friend reads this.

[cougarmom4]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

 

Oh, my goodness. That was absolutely beautiful. I can hardly see through my tears. What an amazing mama and what a way with words. I cannot believe the beautiful photography on that blog.

 

Sweet reminders to cherish the things that matter most in our lives!

[LibraryLover]

I hadn't seen this! Thanks for sharing!

 

:) Here's a link with longer video:

 

http://www.abc.net.au/tv/enoughrope/transcripts/s2267505.htm

[MyBlueLobsters]

:) Here's a link with longer video:

 

http://www.abc.net.au/tv/enoughrope/transcripts/s2267505.htm

 

Thanks! Is the documentary out yet? I may be missing something on the website. Is it available for the general public to see yet?? (Do you know?)

[Perry]

How can I move on and function with my day with all these tears! So beautiful. Words fail me. I hope your friend reads this.

It was beautiful.. Did you see yesterday's post? She's going to be on CNN.

 

Wednesday, March 10, 2010

 

CNN

 

The CNN interview will be primetime international, next Tuesday night, March 16th at 4:00 p.m., Eastern Standard time on CNN (can be viewed internationally on CNNI). It will replay twice the following day and will be available on CNN.com. There is a pre-story up on Connect the World's site where readers can send in questions.

 

Click HERE to see.

 

It was going to be aired Monday, but I got bumped by...um, the Black Eyed Peas.

 

This is crazy. We are humbled. But this is so very cool. If there is the possibility to inspire greatness and to be inspired, we'll take it. Thank you again.

 

Posted by Kelle at 1:14 PM 130 comments

[MyBlueLobsters]

It was beautiful.. Did you see yesterday's post? She's going to be on CNN.

 

 

No way!! That's so awesome! I'm so happy for her!

[LibraryLover]

Thanks! Is the documentary out yet? I may be missing something on the website. Is it available for the general public to see yet?? (Do you know?)

 

 

It's out. I have tried to buy it, but it's not able to be played on US DVD players. You need a certain type....which is what? lol I can't recall. A techie person needs to chime in.

 

I've seen it on Amazon, and you can buy an Aussie playable copy through the abc webite.

[Hockey Mom]

Read this blog http://www.kellehampton.com/2010_01_01_archive.html and if you think your friend is up to it have ber read it too. She will know she is not alone. You may glean some ideas on how to minister to her and her family.

 

This blog is stunning in its pain, reconciliation, and beauty. Thank you for sharing this.

 

With regards to the OP, what a blessing you are for this woman. I agree with most of the advice already given. Please let her know that we are all praying for her and her family. :grouphug:

[3littlekeets]

Oh my, your daughter is so absolutely PRECIOUS!!!!! She's just so pretty! Her smile is so absolutely contagious that it brought tears to my eyes!

 

You are truly blessed!!!!!

:grouphug:

 

 

Thank you! She is a hoot! She is in public school, fully included, and loves it that way. She has friends who adore her, and fight over her! She is having her 6th dance recital this year (and she's 8!), and she never misses an episode of iCarly. I don't know what I'd do without her!

 

Cheers,

Carol

http://www.missmagic.blogspot.com

[MyBlueLobsters]

It's out. I have tried to buy it, but it's not able to be played on US DVD players. You need a certain type....which is what? lol I can't recall. A techie person needs to chime in.

 

I've seen it on Amazon, and you can buy an Aussie playable copy through the abc webite.

 

 

They should market in the US, I'm sure it would do well here!

[TheCoffeeChick]

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

 

and then catch up on the rest of that blog.

 

and give her time to grieve, keep checking on her, running interference with others is good. take the other kids or just go to their house and play games/do wash/clean the house.... whatever lets her know that you're there

 

Thank you for sharing this ... I am literally bawling right now, what a beautiful story.

[ConnieB]

Say CONGRATULATIONS wildly and Sincerely!!!!

 

 

I have a child with down syndrome!!!! Trust me...that's what we miss out on!! There is an awesome book called Gifts... I have to run out for an hour, but check out my blog http://www.missmagic.blogspot.com and I"ll provide you tons of information.

 

DS isn't a curse or a burden....it just make a take a while to see it that way ;-)

 

edited: also check out http://www.ndsccenter.org and ndss.org

 

Whatever you do - DO NOT say "I'm sorry!!!!"

:iagree: I'm sure that it is initially a period of adjustment, but they have a new life in their care, and hopefully they will see that it is a wonderful joy!

 

As for "imposing"....since the father said his concern is having to see others' initial reaction, and you've already shown your initial reaction.....I would push just a tiny bit to make sure that they do not hide away, that they do not feel they should be ashamed of something. Yes, it's disappointing not to have had the perfect birth, or a perfect child, but they have a beautiful baby that they get to raise and love.....they need to be shown that it is a WONDERFUL THING. And perhaps with several other children at home, they need to find that wonder before they get home so that they do not project negatives reactions to their impressionable children.

 

If they are religious, remind them that God has given them THIS child for a purpose...not as a punishment. They have been chosen to raise a very special child.

 

If you are having trouble with the birth of this child being good news and something to be celebrated, then you may want to wait to spend a lot of time with this family until you can come to terms with the truth that any birth is a celebration and can celebrate with and for them.

 

My congratulations to them for the birth of their baby!

[bettyandbob]

I haven't read all the posts, but my youngest has down syndrome.

 

You did the right thing.

 

She's going to grieve a bit, that's normal. You can be a good listener. You can do things to help like you would if her baby had been born w/o an extra chromosome. Things like take her other kids for afternoon--this was one of the most helpful things people did for me.

 

Is the child coming home from the hospital or does he need extra time for complications (heart or other issues)? Mine needed time in the NICU. My dh had to travel for work right after birth so I needed rides to the hospital to be with the baby and childcare for the rest of the group during that time.

 

You can look up local support groups for her, so that when she's ready she can make a phone call.

 

Number 1, the product of this birth is a baby. A wonderful baby to love. Down syndrome and health issues are second. So, it's extremely helpful for you to remain positive about the baby.

 

When my ds was born, we had (and still do) a group home in our neighborhood. We knew one of the men had down syndrome. That man rides the bus to work, he is out in the community doing things like playing basketball and swimming in his free time. In other words, the man lives away from his parents, he has interests, a job and friends. I know people with masters degrees who don't have those things.

 

There have been lots of "success stories" published over the years that may be helpful for your friend to read. A local support group or the hospital social worker may have some copies of these stories to give your friend. You may want to connect with either and see if they have such and can pass them to your friend.

 

I need to get ready for work. When I have time I'll read the other posts and see if I remember more.

[bethben]

I have a son who was born with a rare chromosome disorder that makes down syndrome a walk in the park. When we first found out, people left us alone - I'm sure they didn't know what to say. We had to beg people to pray for us in person and comfort us because we were totally heartbroken. Don't leave your friend alone. There is a grieving they will go through that is very different. They have a child, but not the child they wanted. They never really asked for down syndrome, but now they have to figure out a way to grieve the down syndrome, but not grieve the child. It's hard because you love your child, but not the thing they came with even though it's so much a part of that child. We have this joy/sorrow thing all mixed together. It's a hard road.

 

When my son went through a big surgery recently, my friend gave me a list of things she could do for me. Included on the list, was drive my kids to play dates or to sports things, go grocery shopping...ect...The first year is really tough with these kiddos because you have to unwrap the package to see how best to help them. There are often unknown medical problems. So, the first year will be very tough considering she has 4 other kiddos.

 

Beth

[Tea 4 Three]

I thought this was one of the most beautiful birth stories I have ever read.

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

[_io]

I cannot recommend more highly the blog mommylife by Barbara Curtis. She has four Down Syndrome sons, one biological and three adopted later. Her daughter was on American Idol this season, already been cut, but in the first episode she was in an interview that featured her brothers.

 

Here is her archive of posts that deal with Down Syndrome.

 

And please be sure to watch this slideshow of pictures of moms with their DS children that have been sent to her. There are over a 100 photos. They are absolutely beautiful and heartwarming.

Edited March 12, 2010 by _io

[bettyandbob]

People first language friendly reminder.

 

Having read a few of these posts, I'd like to remind people to use people-first language. Not everyone is aware of people-first language. So, to explain the baby in the original post is a baby who has down syndrome. Not a down's, Not a down's baby, Not a down syndrome baby. Using language this way reminds that a person with a disability is first and foremost a person.

 

I have a son, who happens to have down syndrome. I don't have a downs. I didn't give birth to downs. I gave birth to a little boy.

 

My son doesn't want you to think of him as a disability when you see him. He wants to think of him as a boy. See the person first. Think about the person first.

 

This is the standard reference that many persons with disabilities have advocated for a few years now. I am just trying to inform with this post. I know no one here means anything negative with the terms they used.

 

Thanks

[Laurie4b]

I think you listen a lot and take your cues from your friends. Your friend may be like Nella's mom in that blog...or she may take months to adjust. Just be there with her. Empathize with what she is feeling at the time.

[MyBlueLobsters]

I think you listen a lot and take your cues from your friends. Your friend may be like Nella's mom in that blog...or she may take months to adjust. Just be there with her. Empathize with what she is feeling at the time.

:iagree:

[specialmama]

I also have a special bug. I'm going to post some of my poetry on the special needs forums. I don't share them often, but if they can help someone, then so be it. http://www.welltrainedmind.com/forums/showthread.php?p=1555704#post1555704

Edited March 12, 2010 by specialmama

[blessed2fosteradopt]

Thank you! She is a hoot! She is in public school, fully included, and loves it that way. She has friends who adore her, and fight over her! She is having her 6th dance recital this year (and she's 8!), and she never misses an episode of iCarly. I don't know what I'd do without her!

 

Carol - viewing the photos of your daughter brought a smile to my face and was a bright spot in an otherwise cloudy day. She is truly a ray of light and you have been blessed. Thank your for sharing your sunshine.

 

Now to the OP, please just love her and tell you that you are there for her. I like the idea of offering to be a liason for her family as well. Let us know how things progress. I will be praying for all involved. I hope in time as this precious little one steals their hearts, they will be able to fully embrace the blessing that she is.

 

Hugs :grouphug:,

 

Lisa

[krisp]

I have a dd with DS too -- my oldest. She's a child, fun, ornery, delightful, frustrating, all of the things that kids are :)

 

Additional ideas:

-- Encourage her to breastfeed the baby. There are benefits to the baby that one wouldn't think of with a typical child (palate development, strengthening facial muscles) that will aid for the future, but she's not likely to get encouragement to nurse. (I heard "babies with DS just can't nurse" way too many times and it doesn't have to be true. dd self-weaned at 24.5 months.)

-- Listen, realizing that her "new normal" with this baby is not yours. There will be differences between her new baby and her other children or yours. Let her be different and love her where she's different.

-- Sometimes we think that life will be "normal" again. Really, life will settle into a new normal, but it's not the normal she had before.

-- Try to stay away from the DS stereotypes. All children with DS aren't sweet, happy, joyful all of the time (just like you wouldn't expect it of your "normal" children).

 

I think she is tremendously blessed to have a friend like you, who wants to be there for her and support her in the ways she needs.

[Jean in Newcastle]

I have a dd with DS too -- my oldest. She's a child, fun, ornery, delightful, frustrating, all of the things that kids are :)

 

Additional ideas:

-- Encourage her to breastfeed the baby. There are benefits to the baby that one wouldn't think of with a typical child (palate development, strengthening facial muscles) that will aid for the future, but she's not likely to get encouragement to nurse. (I heard "babies with DS just can't nurse" way too many times and it doesn't have to be true. dd self-weaned at 24.5 months.)

-- Listen, realizing that her "new normal" with this baby is not yours. There will be differences between her new baby and her other children or yours. Let her be different and love her where she's different.

-- Sometimes we think that life will be "normal" again. Really, life will settle into a new normal, but it's not the normal she had before.

-- Try to stay away from the DS stereotypes. All children with DS aren't sweet, happy, joyful all of the time (just like you wouldn't expect it of your "normal" children).

 

I think she is tremendously blessed to have a friend like you, who wants to be there for her and support her in the ways she needs.

 

Very good post. I especially like how you pointed out the Down's Syndrome stereotypes. My nephew has Down's (he's now 33 years old) and he has his good and bad days with behavior just like the rest of us.

[Alessandra]

But, she is tiny and very sleepy, and breastfeeding has not worked at all, so far (apart of once, directly after giving birth).

 

I was wondering if a lactation consultant -- especially one who has experience with special needs children -- might be an idea. Expensive, but worth every penny, IMO.