Friend just had baby with Down Syndrome

Special Needs Down Syndrome
1

My friend just had a baby with Down Syndrome. She is in Australia so I can't see her. She is actually my "ex" sister in law due to a divorce but I am still friends with the family and with my ex. She is also is the aunt of my eight year old daughter.

Of course,I am going to send her a baby card and gift with congratulations. I realize this baby is a blessing and a gift but I am not going to lie and say that my heart is not heavy right now.

I just want to say or do something. She did not know the baby had Down Syndrome until after the birth so this just happened and I am sure she and her family are dealing with the shock of it all. I think it is best to send the card and gift and leave it at that for now. Baby is in ICU for a week and then going home which sounds to me like a good sign. I know there are other complications that babies with Down are prone to.

She has closer friends than me but I was wondering if there is anything I can do for her or for her parents and brother who live here in Houston. I realize they do not want pity or for anyone to feel sorry for them.

If there are any Mom's out there who have a child with Down and can pass along and words of wisdom my way, I would appreciate it.

2

This is all that I can add. My mom is friends with a lady that has a daughter with down's syndrome. She asked her one day, "if you could change anything about the way you and your daughter's life has been would you?" She told her no, not a thing I would change. My Mellisa is the greatest blessing god ever gave me. It took years for me to realize it, but I would do it over again in a heartbeat. In my eyes she is perfect. My Mil friends just had a baby through IVF, and to there surprise she was born down syndrome. They too feel so blessed they waited years to have a child, and this is what the lord gave them. I too have a daughter with a very rare Genetic condition.....she is my world. People look at me different when they hear about it, but I could care less. She is my girl! Your friend may feel the same way! My daughter is 8 weeks old now. I was really glad when everybody quit treating me so fragile. I just did not want to talk about it anymore!! Just be supportive.....

3

My sister has Rhett syndrome and so I have been around handicapped people all of my life. My suggestion would be just let her lead. Send your congratulations and gift and simply ask how the little one is doing, when will baby will get to go home etc. I think you can ask how she is feeling overall and just follow her lead. If you focus on showing concern for the health of the baby, then she can fell free to talk to you about any health condition she is ready to discuss. So I think congratulations are definitely in order along with sincere concern for the health of mommy and baby. Have a great day!!

4

I agree that you should congratulate your friend and send the gift and card. You are correct that this is a blessing. I have an uncle, although not downs, he has some form of autism/mental disability and he is a joy!

As an infant/toddler caregive when I used to work in a daycare, we had a child who was downs and she was adorable and oh so sweet. (But very precocious!!!)

Many children with downs are functional and they have such a differnt outlook on life that when you are around them you see how beautiful life can be.

I truly believe that people with downs are angels in disguise!

I would not pitty them but rejoice in the wonderful addition to their family. Of course there are challenges with any disability, but I am sure your friend and her family with do just fine!

5

Hi! I have a first cousin with Downs. He graduated highschool this year and is doing so well. Physical therapy and other kinds of thereapy were done from birth pretty much. He can work and possibly even have a romantic relationship as sometimes Downs kids do eventually marry. He's doing great!

My college dorm dean's son has Downs and he was the sweetest person. I adored him. HE could write his name and I'm certain if he had a good school he would have learned a lot more then that as he had determination. But they said that was 'all they could teach him' and dismissed him! He could put together a dismantled VCR so I am CERTAIN with training he could work. Poor guy

So, education and therapy is key and her child may do beautifully. Of, a good friend of mine's sister is also Downs. She's doing great.

My daughters and I have autism and people are shocked I'm having a fifth child. They are wonderful and I love each of them and if I have another with autism so be it. Those with disabilities can offer a great many things to this world.

6

Dear Lisa,

I am not the mother of a Down Syndrome child; but, I did work in Labor and Delivery for many years, and this genetic condition is more prevalent than most people realize. Many of the parents are young, and their children have a primary thing in common, there is an extra chromosome.

The High School where I am now employed has a particular section for Down kids. Many are high functioning and very loving. The loving part may be the saving grace for the new Mom. If you would like, there is a Website for Down. It is called the National Down Syndrome Association.

There is some fascinating information contained in those pages. Just type in your search engine, Down Syndrome Association.

For the extended family in Houston, there is a Down Syndrome Association of Houston, www.dsah.net, telephone 713-682-7237. They offer a number of services, including support groups. Australia has a similar group called the Down Syndrome Association of Australia.

Most families don't understand the condition, and as you say don't want pity, and need time to adjust to life now as it will forever be. Lisa, for now, perhaps it's best for you to wait for them to come to you. The Down children will have a most special place in heaven like no other. It could be a beautiful world if all people could come to that conclusion.

You have my greatest respect for your concern for the family of this precious child. Have a wonderful weekend, Lisa.

Best wishes, Rose

7

Hi Lisa,
I used to work at Special Olympics and rule of thumb is anyone with a disability is always a person first. So, of course send your congrats as a new baby is here. There are many support groups across the country that I am sure the hospital is getting her all the info she will need to help her navigate towards one that will fit her needs. I have worked with many, many people that have down syndrome and can tell you how much joy they were to be with. There are many people w/ ds that are high functioning and are apart of our working force....People say when you have a child with disabilities that your responsibility as a parent is a life long one-true...I am a parent of 3 healthy kids and I don't feel any different...age doesn't take away the responsibility you feel towards your child regardless of their abilities. I think your congrats is suffice, as I am sure the hospital is helping the family with everything they need to help them start off successfully. As time progresses, it is certainly okay to see how the little one is doing..just like you would with any baby. I have a friend who had given birth only to have her baby pass hours later...your friend has a breathing human life and in time she will see it as a blessing. I understand your heavy heart...take care!

8

My sister had down syndrome....she also had heart problems and died when she was 7. But down syndrome kids will live long and happy lives. My sister would be 24 today, but growing up we didnt treat her any different than any other children. She was extreamly smart and went to school everyday. She got away with more but hay we knew from the time she was born will all her other problems she wasnt gonna be with us long. Yes they are prone to have other problems but I have seen many d.s. children grow up to be happy healthy adults. Each case is different. She should charish the fact that god has chosen her to be the care taker of such a speacial child. The love she gets back in return from that baby will out weigh all the problems........

9

Hi Lisa,

My name is Debra and 8 years ago I was blessed with a baby girl with down syndrome. We, like your friend did not know prior to delivery. Luckily, Alex did not have any heart or intestinal issues. I will tell you the best possible thing you can do for her is support her and treat this baby just like you would any other. What broke my heart more than anything is when someone would say "I'm sorry". Yes, I was terrified and actually I went through a morning period because of the unknown and you know what, that's normal and okay.

The best piece of advice I can give your friend is to sign up for Early Childhood Intervention if they have it where she lives. The sooner the better. When Alex was two weeks old my husband and I went to a Genetisist. This moron told us "Don't expect much!" I was furious, how can anyone just not place expectations on someone because of a diagnosis.

Please let me tell you that Alex is going into the second grade and is reading, doing math and all of the other "Normal" things kids do. Yes, she is delayed some but let me tell you, she has surpassed everyone's original expectations because a really good friend of ours told us when she was very little "Let her have the dignity of failure" Wow, words of wisdom.

The first couple of months will be difficult for your friend because she is probably going thru all the adjustments of just having a new baby and dealing with friends and family can sometimes be very difficult. If she has email, keep in close touch with her and ask questions about the baby and make sure she has a shoulder to lean on. My best friend would call all the time just asking simple questions, how's the feeding going, are you getting any sleep, etc....she just stayed plugged in and she made me laugh......

Good luck and god bless,
Debra

10

I won't go into lengthy detail, but Down's Syndrome runs in my family. First of all, by all means send a gift and card. Congratulate the parents and grandparents on their new little bundle of joy. Maybe you can find a card to send the grandparents.

Continue to ask about mother and baby, if you feel so compelled. However, when asking you may want to concentrate on asking questions you would would ask about any "normal, healthy" baby...Is the baby eating well? Are you tired? How are family members adjusting to the new baby?

Please don't assume that having a baby with Down's Syndrome is a sad thing that requires your sympathy. At times, your friend may want a listening ear because it can be a difficult situation. If so, she will no doubt let you know. But ANY baby is a blessing (even when he/she comes with surprises), and keeping your tone positive will be a BIG support in itself.

People with Down's Syndrome can live happy lives these days. They go to school. They get jobs. They sometimes even get married. I know my family members with Down's and disabilities want to be treated as much like a "normal" person as possible. Yes, they have disabilities, but they also have abilities and strengths. (Sorry if I sound preachy.)

Anyway, long story short, I think you are on the right track wanting to be supportive and send a gift.

11

Hi Lisa I have a down syndrome niece. My husbands brother and his wifes 3rd. child. The other children are totally healthy. The fourth baby was fine also. It caused from a bad egg. I did not know that until researching this. It was a complete shock to them too. But what a blessing in disquise. They are the sweetest most prescious gift. My niece does not talk alot they taught her how to use sign language. She talks a little bit. I would advise everyone close to the family to learn sign language just incase. I am a teacher assistant and we have 2 downs children are are smart and very independant, funny, they love to joke around , and laugh just like all normal children. Downs children are so special but its hard not to think the worst when this happens in your family. Everything will be great. There is a reason for everything. God Bless you and your family. Oh yeah check out the FEAT organization. Its an organization for parents of Downs Children they are based in Austin but are staring up in Houston which is where my niece lives. I get e-mails from them all the time and it may be helpful to you and the family. Brandy K.

12

Hi Lisa,

I think what your friend will need most at this time is normalcy. Don't treat her situation any different than if she had a normal healthy baby. They have a lot to deal with and learn with their new baby and the last thing they need is to deal with other people's issues. They have waited 9 months for this blessing and it needs to be celebrated as if there were nothing different. God has chosen them for this venture and I am sure they will flourish in that child's love in the years to come. Be excited for your friend and be there when she needs to talk, but this baby is no different than any other right now. She has the same needs as any other, and maybe a little more, but she is still their little bundle of joy. Save the "special" gifts, etc. for later on, a birthday or Christmas perhaps, when her abilities and known and she might need that extra little help in her development. Right now she is a baby, a beautiful baby, and her parents, grandparents, and uncle should all be thrilled to have a new family member in their midst. And right now she needs all the same things as any other baby in this world, the basic essentials, love and health care. Everything will be fine for all of you and all of them. They just need time to get over the initial shock and bond with their precious baby. And it sounds like you need to, too, but are unsure since you are so far away. Encourage your friend to send photos, etc. just like any other new mother would and rejoice with her.

13

I just had my fourth child and im 22. All my kids have come out healthy but this last one had a problem with her hip. I grew up with 2 brothers and one sister then my dad had more kids after we all grew up 3 of them. One the girl had downs syndrome. It was akward the way she had to learn. She tried to use her feet as hands. Her eyes would stray and tongue out. She is 5 now.Its clear that she is not your typical 5 year old she has that look. But being raised with an older brother and little brother within the same age she is by no means at a disadvantage. She can come back with come backs and play with them. At times she has pointed out our flaws and made us feel funny.The best thing to do is treat her as if she didnt have downs. Thats peoples biggest mistake putting these kids at a disadvantage by not giveing them the same learning activities. Some things may take more attention for the parents to teach but kids are precious. Shes already in school and gets on the computer by herself.She had heart surgery when she was small. Shes doing good. I would just send congrads and celebrate the birth. Nothing to be sad about we are all different.

14

Lisa,

To begin with CONGRATULATIONS!!!! It is a double edged sword to have or not have the knowledge of giving birth to a Down's baby, but in my religion it is a blessing all around.

My relgion teaches that Down's children are the ones that cast Satan out of heaven. When he threatened retaliation on those who removed him, God promised that those spirits would be forever protected, so he made them Down's. Yes, these babies are born with (many) health struggles as well as others we can and cannot see, but my relgion teaches that these babies knew what they were getting into. This baby picked a special mother to be born to. When I look into the smile of a Down's child I see God himself and the peace and purity he expresses. (I realize that babies and children and are not to be labeled as a medical condition, race, religion, etc and I do not do it out of disrespect; it's only done in reference of this topic. Babies/children are born with .... not as.)

Anyhow...treat your nephew/niece as you would another infant. Let the family be your guide as to how they want to deal with the syndrome and the baby's current and possible future health problems. You can do your own research with your doctor, library, internet, support group so that you are informed. I believe that if you treat a child as if they have a problem, they will grow to believe they are a problem.

When one of my children was born with a medical condition, the doctors told us that she would not be able to do certain things. I said...BULL...and I have never stopped her. I let her be the guide and she surprises us all.

God Bless to you and yours. Again..CONGRATULATIONS!

15

First I want to echo the advice of the other very insightful women who responded to celebrate this baby's birth just as you would with any healthy baby blessing. Enjoy the bonding time, even if there are some speed bumps of health issues.

As they settle in and bond with their precious baby you may consider a wonderful book that Pam Vredveldt wrote about her unexpected Down's Syndrome baby titled "The Angel Behind The Rocking Chair".
You can probably find it through Barnes & Noble or Amazon; however, I have always been able to pick up copies or order them from Lifeway bookstores.

I have given it a few times and it was so well received, that those moms have asked where to find it to forward on to other families
.
I don't know your SIL's faith situation; but, Pam is a christian author who shares where she gets her strength to recover from the initial shock and what day to day experiences (both wonderful and challenging)she has gone through and how each remind her of what a blessings her gift from God is. Her writing style is insightful and witty, informative, and empowering.

Thank you for having a heart to do something. Many times friends let their personal fear of "what is the right thing or wrong thing to do" cloud their heart so much that they do nothing or ignore the elephant in the room.

My advice is to let her know that you know and that you care, let her know you are there to listen to her when she needs to talk, or cry, or scream; let her know that you don't pretend to understand all that she is going through or feeling; but, want her to know that your heart is full for them and you want to continue to be a supporting friend.

and then...Stay in touch and be the supporting friend. Getting a phone call (even at a bad time to talk) is such a blessing and afirmation of love that is much needed. Fun, informational notes in the mail of your life, activities are welcome connections. Don't feel guilty for sharing your life activities - you won't make her feel sadder that her life isn't like yours. Hers will be full of her own experiences to share...they will just be different. As different as if you had girl babies and she had boys - they are just different.

Love on her and stay in touch with her. Be her support in whatever that may mean to you two. Let your love for her be stronger than your own fear of what is right. What is right is anything you do from the heart.

This baby is a miraculous gift she will grow to understand and appreciate far more than she can fathom right now.

16

Sending a gift with card is the perfect thing to do! You must treat the baby's birth just as you would any other. Every baby is a miracle and a time to celebrate.

I have an 8 1/2 month old baby girl that was born with Trisomy 21 (Down Syndrome). She is such a beautiful baby girl. We were blessed that she doesn't have any health problems whatsoever and continues to do very well. We could not love her anymore than we do.

We didn't know prior to her birth that she had this. There were markers, but, I did not undergoe a amnio to see for sure. I had the quad screen and a ton of Level 2 ultrasounds. We were given a 20% chance of her having DS.

In any case, your friend will be in shock initially, as were we, and that may move over to denial (until the genetic test comes back positive), and then she'll go through all the grieving signs that one goes through when they experience a death in the family. What happens is, when one gives birth to a baby with DS, they grieve for what they dreamed of having; a baby with no genetic condition; a healthy baby.

With the support of you and her family and friends, she will get though this, and, will come to realize that raising a baby with Down Syndrome is truely a gift.

As for doing something for her parents, there really isn't a need. And you are right, no one who has a family member with DS wants pity.

Our baby may have down syndrome, and it will always play a little part of who she is, but, it is not a horrible thing. She will do just fine because she has a family who loves her, and has all the early childhood intervention she can get. We have her in a gymnastics class, swimming class and music class, all for "avereage" kids. Sure, she does play with some children with DS, but, we make sure she interacts with all children.

Make sure your friend gets involved in a DS group. Her doctors should recommend it.

17

My daughter has Down Syndrome and she is 21 years old. When she was born, I thought it was so cliche for people to say that God gives special kids to special people. I didn't really want to hear that. Yes, I loved her from the start, but I actually appreciate the journey God gave me more and more as time goes on. I look back and feel like God really did bless me with a special gift that keeps on giving.

Many of kids born with DS have heart defects that require surgery, and the parents also have to be involved to advocate for their child's education; however, "normal" kids present challenges, too.

Your friend needs to reach out to the resources in her area. She may live in Australia, but I am sure they probably have most of the supportive organizations that we have here. Before leaving the hospital when my daughter was born, I asked the Social Worker about the community resources. She gave me the number for the Harris County Mental Health and Mental Retardation Authority. My daughter started an Infant Stimulation program at 6 weeks of age; as the child grows they teach you play therapy, ways to improve their fine motor skills and help develop their speech. You learn about positive reinforcement and the challenge of discipline, as the terrible 2's last forever. The Infant Program goes into the Early Childhood Intervention Program until they start school. Then you meet with the teachers every year to plan your child's educational goals.

Special Olympics and all the other parents you meet throughout these programs is probably the best part, sharing thoughts and information, networking, etc.

It's not the same journey that your friend planned, but it is surely a special journey. When my daughter was born, I said, "God, what are you thinking and do you really think I can do this?" Hopefully, but it may be many years from now, your friend will say, "Gee, God, NOW I know what you were thinking."

18

I have a five year old daughter with Down syndrome. Good news to hear the baby is going home in one week! I hope that is still the case. There are a lot of complications that can happen. The best thing I think is to show your joy over their baby. Let them see how excited you are over their new baby. There is a great book out now called Gifts:Mothers Reflect on How Children with Down Syndrome Affect Their Lives by Kathryn Lynard Soper. It is great! It has several moms' stories, very honest and enduring and down to earth. They talk about the joy, heart ache, sorrow, happiness, all of it. So maybe you could get that book for her as well as the grandparents. The thing you can do is get invovled and learn about Down Syndrome awareness, The National Down Syndrome Congress and The National Down Syndrome Society are good places to go to on-line. The best thing is to be honest about your own feelings, ask about how the baby is doing, ask them how doctor visits go, later on how therapy appoitments go, etc. Congratulate but don't condesend either. Some parents don't feel it is a blessing, at least not yet. We don't want to hear how people with Down syndrome are always so happy, etc. In reality that is not the case. They are as different and unique as anyone else. Keep them in your prayers.

19

As the mom of a little boy with down's the main thing we want is to quit hearing the negative stuff. we don't want to hear I'm sorry when we tell people. If one more person tells me how "special" my son is I will scream! He'd be special with or without an extra chormosome. She needs to hear postive things! Like that her baby will crawl and will walk and will talk and will go to school. She needs to hear that you care and are intrested. Send her a book on downs for new families. Look up greater clear lake families exploring downs syndrome they have a great free dvd you can get and send to her its very uplifting and will let her know she isn't alone!
hth
Jaci

20

Thank you for all your responses. I hope my friend gets to hear advice and stories like the ones you have shared b/c I am sure she will find comfort in them as I have. I am sure she will have her own support groups, she’s a smart, ambitious gal.

A BIG thanks to the mom’s out there who have a child with DS and responded, I appreciate your honesty. No one can explain what my friend is going through like you.

I did send a card and little note congratulating her. No mention of DS, just a card as I would have sent if nothing was different. In the future, I will let her know I am here but will take her lead if she wants to talk. In the meantime, I plan on asking the normal questions I would ask any new mom (feeding, sleeping, ask for pictures, etc.)

I did find an amazing book, nothing technical or written by a physician, it is called “Gifts: Mothers Reflect on how Children with Down Syndrome Enrich Their Lives”. I am NOT sending it now…I am saving it for a little while, maybe a month or so. It has 67 testimonials from Moms, and even won a “Mom’s Choice Award”. Supposed to be upbeat but honest at the same time.