Telling Others About Our Child

Hi J.,

Congratulations on your new son! Babies are the most wonderful blessings we ever get, aren't they? I have not gone through this specifically, but thought I would put my ideas on the table for you to use or toss as you see fit!

I think an email or a written/computer made birth announcement would both be good ways to communicate with your friends. I would include his diagnosis in context with ALL of your most up to date information on him: His smile, his disposition, his like (or dislike!) of baths, etc. After all this diagnosis does not solely define your son. If it were me, I would make it a very personal announcement with details about him and a few pictures. (You probably have about 2000 by now, at one month!)

I thought a nice way to phrase it is given in an article I linked below. It is the way one family announced their son's Down Syndrome in their holiday newsletter. Until the father took a job for the Down Syndrome Research and Treatment Foundation, they chose to never formally announced it. They let people hold him and love him and then explained his condition, once the family members, friends, etc. had gotten the chance to meet their son. Their wording follows:

"Evan is curious, rambunctious, playful, affectionate, vocal and determined." They told of their recent travels with Evan to Singapore, Sweden and China.

Then, toward the end of the letter, came the words they had thought about for so long and chosen so carefully. "Evan was born with Trisomy 21, a genetic condition," they wrote. "He has three normal copies of his 21st chromosome, whereas most people have two. This is a fairly common condition, also known as Down syndrome."

There seems to be two camps of thought on this:
1. People who think that it is best to announce the news to everyone asap
for one article see link" http://www.aim-high.org/data/content/view/47/43/
and
2. People who don't want to formally announce it--ever.
see link: http://www.aim-high.org/data/content/view/47/43/

I think an email would, indeed save you telling and retelling your story and it is one way to quickly and thoughtfully spread the news of your family. Again, congratulations to you and your family.

3 moms found this helpful

J., my niece was born and the pediatrician suspected Downs because of an extra fold in the corner of her eye and low body temperature. After the diagnosis was made, him and his wife told both sets of grandparents together. Then the grandmothers helped them make phone calls. Some people knew before they received the call.Thank God, no one has treated her differently and we all helped her research info and set up Early Intervention. There is a lot available. She currently is in preschool and loves it!
Congrats on your bundle of joy!
In today's day, email is accepted, but I personally would prefer a phone call or even set up a gathering. Your child is the most precious person to you so I would only share the info with your closest family and friends. Some will have many questions about what it is and what can they do to help. Be prepared to answer all of them or refer them to a website or have a "handout" with info.
What ever you do, do not announce it until you and your hubby feel comfortable. My bro in law and his wife went through many emotions especially fear of how they were going to provide the best for my niece (work full time and live in a very rural area).Every child is unique and explain that you know that your child will experience some challenging moments, but so does every child.Explain some problems that children with Downs might face medically such as hypothyroidism,cardiac problems,etc. and that you would appreciate any support during those times which may include just listening,watching your other children or simply not being insulted if they don't hear from you because you are busy. Good luck and let us know how you decide to make the announcement!

2 moms found this helpful

Hi! Congratulations on your new son! I'm sure he is another love of your lives. I don't have personal experience with this, but my cousin did. He and his wife were told early in the pregnancy that some of their testing suggested Down Syndrome. They elected to not have extensive testing because they would never consider not having their child. Once he was born, it was confirmed that he did have DS. They only told immediate family members and, of course, the word spread. It's just how people are. But none was malicious as far as I heard from the mother of the baby. Noone ever said "I'm sorry" to them, because the parents just treated him like they did their other child. As for your question about the e-mail, I say, why not? I would probably send out an e-mail like a "family update". Like, hi all, just wanted to touch base with everyone. It's been a crazy month with having a new baby in the house. Give a little blurb on each kid and add we also found out that "baby" has been diagnosed with Down Syndrome. So among all the other kid stuff, we have been setting up Early Intervention for him. In a nutshell, all is great and we can't wait for you to get to know "baby". I think you should do or say whatever you feel most comfortable with. God bless. Enjoy your new baby and other children!

2 moms found this helpful

Congratulations on the birth of your son ! My daughter, Claire, has Down syndrome and is now 7 years old. We also did not know she was going to be born with DS. Her birth was such a mix of emotions. And yes, it was very difficult to retell the story again and again. A few suggestions would be to include a brief letter explaining the diagnosis along with a few resources in a birth announcement to help educate those who will be your and your son's biggest supporters. The other thought would be to designate a few "point people" a best friend, sibling etc. To contact various others in your family/social network to let them know. Unfortunately, you will get those who say "I am sorry". Just have faith that those people likely don't mean to upset you, but may be new to this whole experience as well. I have helped to start a parent group in South Jersey knows as KIIDS (knowledge and information about individuals with DS www.kiids.info) which offers various programs for families and children with DS. Not sure where you are located. We are in Mullica Hill.

L. W

2 moms found this helpful

Congratulations on your new beautiful baby and how refreshing to herar your response to his birth! I do not have a downs baby, but do have a special needs baby who has been chronically ill since he was born.

Maybe you could send out a family update newsletter, like some families do at Christmas, but it can be an announcement like newsletter to those you want to know. I would still meet with those closest to you face-to-face if possible, but that would save you talking about it non stop.

Best of luck and congratulations on your new addition!

1 mom found this helpful

Congratulations on your little boy:) I think sending out a birth announcement would cover all of your bases. Birth announcements are joyous and show people how your celebrating your baby. You can have pictures of him and the joy he brings to all of you through his coos and smiles. Then you can mention that he has been diagnosed with Downs Syndrome and offer any information you feel would be helpful. Keep celebrating him and hopefully, everyone else will join in:)
Best wishes and enjoy your little one!

1 mom found this helpful

I haven't gone through this, but bravo to you ! You sound like you are doing everything right.

I TOTALLY understand your wanting to send ONE e-mail to everyone, get the news out, and deal with their responses that way, rather than telling each person individually and going thru a potential cry-fest. That might also leave you in the position of feeling as if you have to comfort them, (this happened to me as a kid when people would ask what my DADDY did -- a wierd question people would always ask in the late 50's and early 60's -- and I'd have to tell them he was dead. Then I'd end up at 5 years old or so having to comfort them for the huge social error they'd made. It's a pain)

I think you should tell them in the easiest way for you. You are the one coping with the whole situation, and coping very well by the sound of it. Let them know up front in the e-mail the reasons that you withheld the information earlier, and that it's just easier for you to send it out once than to personally make 100 calls while caring for your infant son, or to make 50 visits to friends to tell them. If they love you, they should understand that. They may respond by calling you on the phone, or they may respond in e-mail, but you won't have shown any prejudice, because you told EVERYONE at the same time ! :-)

I don't know how you kept it private, myself ! I would have at least called my mom for support, and probably my sister. So the news would have gotten around without my saying anything at all to anyone else.

You are obviously an amazing mom, and you and your husband have a wonderful relationship to be able to make the decisions you did, and to cope with the reality of the situation. Sometimes we have to cope together before we can enlighten everyone else. That's definately okay. There is nothing anyone could have done had they known sooner, so you made the right decision by giving yourselves time to get used to the whole idea before spreading it around.

By sending an e-mail note, you are getting the info around, in a way that allows you to cope by degrees -- a little at a time, as people respond to your message, and if they respond in e-mail, you can turn off the pc when you've had enough.

Take care of you. You are the caretaker for your new son and for his siblings. Everyone else comes second to your own family. :-)

1 mom found this helpful

Congratulations on your son's birth!

When my son was diagnosed with leukemia I sent out a mass email to family and friends to let them know. Not only would it have been too time consuming to contact all of the people I wanted to tell individually by phone, but I was too emotional to have that conversation with more than just my immediate family. I didn't want to ask my parents or in-laws to make the calls because they, too, were emotional at hearing the news. I also wanted to give the most accurate info I could and sending the email myself gave me a bit of control at a very chaotic time. I think it also was a way for me to face the situation head on and begin dealing with it in a way that was therapeutic for me. It's been 2 1/2 years since I sent that email, and I don't regret it at all.

The best advice I can give is if you choose to announce your news to others, either by written or spoken means, stay positive. Let everyone see that you are determined to keep everything as normal as possible for your son and for your family. Let them see that you are not in denial but don't view your situation as one to be sorry about. Be prepared that people will say "I'm sorry." They don't mean any harm. They want to connect with you and offer support. Counter their "sorry" comments with something positive and thank them for their support. Be patient and give them time to adjust to the news as well as to trust that you truly are okay. In your correspondence, you might include agencies or websites to contact if they are interested in learning more about DS. You might also start your correspondence with an update on how your family is doing since the birth of your son, focusing on details not related to DS. This will show that you are in tune with all aspects of your life and that your son's diagnosis is just one part of your life. Best wishes to you!

1 mom found this helpful

Hello J.,

I think an email is totally acceptable. I just yesterday received the sad news of a friend's miscarriage that way.

I also think, like someone else mentioned, that you don't have to tell everyone, and of course, you really don't have to worry about anyone else.

But since it seems to be your wish to communicate the news, I think it would be helpful to phrase it like you have in your post, you explained the situation, and let us know that you're not "sorry" or any other thing... you're just happy to welcome a beautiful new life to your family. For people who haven't had this experience, you've really given them a clear indication of how to respond -- with joy! People might not know what to say (I wouldn't have), but you're clearly communicating, and that will help.

Congratulations and best of luck.

1 mom found this helpful

Hi J.,
Congrats on your new addition!
In regards to telling people about his diagnosis, I do think that email is the way to go. I was diagnosed with MS this past year and I HATED having to call people and tell each person everything that had happened, was currently happening, and would happen in the future. It got "old" very quick and harder and harder to talk about, because it seemed to be the only thing people wanted to talk about.
My husband and I had discussed sending out a mass email telling people about the diagnosis and then also giving them a link to the National MS Society so that if they wanted to know more about what MS was and what treatment was like then they could look it up for themselves. I so wish we would have done it. But once you call one person and tell them, the word really spreads quickly because people care and want to help in anyway that they can.
In the email you could tell them exactly what you told all of us, and how they can support you and your family if you need it.
God Bless you and your family.
T. E.

1 mom found this helpful

I think the way you said it here, was perfect! "I don't know if this is the right way to go about this, but I don't want to retell the same story a thousand times, so here it is:" People will not mind at all, and it will give them time to absorb this on their own. Are you just sparing yourself pain? Who cares! Who said you have to have pain! You will get the chance to talk in depth about it to your friends over time. For a preliminary announcement, go ahead and send an email. And be sure to include the part that you don't want to hear any sorrys, because you are so happy your son is here. Bless you, and congratulations on your beautiful son!

1 mom found this helpful

Well Hun being born with a birth effect my self i know how i feel telling the world. MY mother always said i was her most honest child. Honesty although at times may hurt is still the best policy. Once people get past the initial shock of it they will either be there for you and your child or they will quickly disappear. Be ever proud of your child and never say he is an embarrassment or let him know you are disappointed in the way he was born. That can hurt a child ever so bad for life. Build his self esteem more than anything else. Tell the world both ways an email is a general thing that will take half the stress of how to tell who to tell how to tell and it will be a good place to vent and let go. we all need that. then with those you are most intimate and closest sit over a cub of joe and share your concerns. and honey let the nasty slings and arrows of some cold callous people just whiz by you ignore them and hold your head high as the proud parent you are.

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You are blessed -- that is what everyone needs to know. imo You can set your own pace for information.
Special children, shape us, mold us and make us better, more realistic people on levels that most people just don't get.
Just because someone does not see the lining, does not mean you won't. :) Congratulations!

1 mom found this helpful

I think you are very sweet to be concerned about others - however, they are not your priority. Some people will be helpful and kind, others will be uncomfortable - it is inevitable.
Perhaps an email is too impersonal. Perhaps a family newsletter with sweet pictures and a straightforward explanation might be a compromise. If telling the story a thousand times is tiring, then avoid it - you need all the rest you can get with a NB in the house.
Wishing you the best and congratulations on your little boy.

Congratulations on your beautiful boy!!

It is sad, but some of these answers just made your point. A few here asked,"Why do you feel you have to say anything?"
I'll answer that...because there ARE insensitive people out there who will ask insensitive questions...some people here proved that fact. How dare they try to make you feel foolish for asking a perfectly legitimate question. Some people have no couth. I understand where that came from (saying you don't have to answer to anyone) but the way it was posed in itself was ironic.

I have to go to the hospital now to pick up my hubby but I'll be back to throw in my two cents (or maybe a nickel in this case). :)

dear J. ,
Why do you feel you have a "NEED" to tell friends and neighbors ?
#1 =now that you and your loving [ a gift] husband have set up services, adjusted, did your research. you have only ONE job to do...TAKE care of all your babies . love them , teach them ...
#2= I would suggest you KINDLY tell all grammys and grandpas and EXPLAIN to your older children [ at their level] all about ' sons' future disabitities and ask for their help , such as ; kisses, tubby time , tummy time,sunday services , etc ... .
#3= I ADMIRE YOUR FAMILY for being so kind to ' son' and deciding to relish in the good . keep it that way ; what a role model for everyone around you .
#4= I highly suggest you do not set yourself up for ' peoples reaction' over and over ... your children are watching !. he is your SON ,henceforth, not your families MEDICAL ISSUE .
#5= the world is mean . stay with your services , your children, work as a unit ... 'TIME' will solve your question ... ' LET IT BE' , he is a cute little BOY ...
keep it that way !
xoxoxo
kindly,
t

Congrats on the wonderful new addition to your family! I think that how you stated things here is a great way to let everyone know about your baby. Yes, your life is going to change, but it always does...It will be enhanced in ways you never imagined. People who have had experiences with children with special needs know that your lives are greatly enhanced. I think that your friends and family will know this already and come to realize it. I completely understand that you would like to inform everyone. This way you won't have people wondering if something is wrong, asking other people and not getting the information from you. We all brag about our children and talk about them all the time, this is just another thing to share about their lives.

J.,
You have been SO blessed, having a Down baby or not. A child is a wonderful gift from God. How your friends and relatives take it is not something you should be concerned with. Making sure that your child gets the appropriate education and love is the point.
I am going to college for special education. A requirement for taking these type of classes are to go into schools and experience hands on how children of special needs act and react. I have been so touched when leaving the schools I have the feeling of being overwhelmed and yet with a warm heart all day. Every child has something to offer, they just need to find their niche. If your heart is open, you too (and friends and relatives) will probably learn something about themselves they didn't know already.
You are blessed, your child is blessed...think nothing less!

I dont see anything wrong with sending an email, and I would be honest about why you chose to do it that way, just as you were here.

As for the reactions you might get from others... I feel like a jerk right now, because I think "I'm sorry" is probably exactly what I would say if you were my friend. Not because I would be sorry that your son was born (that would be a horrible thing to say), but I would be sorry that you have to go through a lot of difficult things that you didnt have to worry about with your other children... even things as simple as choosing whether/how to make this announcement to your friends. Hopefully your friends would have the same intentions, and hopefully thinking of it this way will make it a little easier when someone does say it. I think the best response you can give is... "Thank you. This diagnosis has been difficult for all of us, but I wouldnt trade him for the world!"

Good luck, and congratulations on your new little bundle of joy!

First of all, congratulations on your new little peanut. I hope that you are finding the time to enjoy all the special moments with a newborn :)

Secondly, I think that e-mail is the way to go with your network of friends. You will most likely tell a few close friends and your family, so don't convince yourself that you are avoiding any of that pain. Plus, anyone who cares about you will understand all that you have on your plate right now. When our twins were born early and spent eight weeks in the NICU, I sent out e-mails to keep everyone up to date. It seemed that our friends appreciated the less personal approach in lieu of frequency of updates. In your case, I'm sure that your friends recognize that you have three children and are dealing with an important medical diagnosis. They will cherish any way that you choose to reach out to them right now. Just be sure that the e-mail lets your personality show through - the more it sounds like you, the more connected they will feel (I used humor as much as possible so that everyone knew that I was doing OK and that they could still expect to hear my usual voice if they decided to pick up the phone and call) . . .

I have worked with children with Down Syndrome, so I definitely will not be telling you "I'm sorry" because they are some of the most lovable and fun people to be around. I admire and respect you for accepting this challenge from the get-go and getting the services you need right away. This will definitely help you and your family in many ways.

I wish I could give you good, sound advice on how to tell your extended family and friends, but I have never been in the situation. All I can say is tell them at your own pace. Good luck and congratulations on your little miracle!

Hello, J.,
First of all, congratulations on your new addition to the family!
Secondly, I don't have experience with a child with Down Syndrome or any other special needs, but I hope you will welcome my "first read through" opinion.
In this day and age, e-mail is an every day thing and widely accepted, so if you feel comfortable doing that, then go for it! I don't really think you're trying to "spare yourself the pain of seeing reactions", honestly. I think it just "gets old", for lack of a better phrase, telling the same story over and over and over, as you mentioned. Don't feel bad about that. It would be so much better to have people already know, let them chat on the phone, come over for a visit, whatever, and have it out of the way, so to speak, and carry on with your normal conversations and having a good visit, etc.

You could also consider a form of communication through the postal mail, such as cards or letters or something if you're still hesitant about the e-mail.

Whatever you choose to do, don't feel the least bit guilty about it. It's your child and your life and you do with it what you want. In your communication, let them know flat-out that you don't want to hear "I'm sorry" and for the exact reason that you stated here. Perfectly fine. People will understand.

I sure wish you the best and again, congratulations! I bet your other children are just tickled pink to have a new little brother!

What is there to tell? And why do you have to annoce it to the world? Your son is a gift, and your true friends will see that and hopefully not ask to many stupid questions. So many children are living normal healthy lives with the same condiotion. Some you can tell by looking at them and some you pick it up when they are talking to you.

Your true friends will come and stand by you and not judge or say "I am sorry". You are right there is nothing to be sorry about. Your where given a child that is special. Just like all children are special in there very own way.

I have a child that needs a little extra help, and they are not able to put a name to him. But the school wants to degrade him. You are going to need to be strong and fight for your child and all your other children to be treated equal. If we don;t then no one will.

You have started on the right path by getting the early help and asst. Keep up the strong work.

First congratulations on the birth of your new son. I can relate to what you are talking about. When my son was born sickly (we took him home on hospice) I had a relative call and say she didn't know what to say to me because she certainly couldn't congratulate me. - and there I was sitting with my beautiful baby boy who I would not trade for any thing - congratulations were certainly in order...A friend of mine who went through a similar situation (trisomy 13) actually got a sympathy card when her son was BORN. Unbelievable. I do however think that most people have good intentions their approach is just some times not what we would like. The news of your son's diagnosis will probably be a surprise to your friends and they will need to time to pull their thoughts together (so they don't blurt out something hurtful to you). Therefore, I would probably send an e-mail. I agree that I also would not want to have to retell the story a thousand times.
Enjoy your son! You are so lucky to have him!

J.,
I am sorry if I come off too blunt, but Why areyou looking for a way to explain your child. He is your brand new baby boy and you love him that is all that matters. Some people make bigger deals out of nothing. This is your son you dont have to explain anything to anyone. If you start to treat him different he is going to grow up feeling different and you don't want that. Let him grow up as "normal" as possible.
Shant'e