tag:blogger.com,1999:blog-401303964563152307.post893371929274913383..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : What to say when a friend has a baby with special needs?Ellen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger61125tag:blogger.com,1999:blog-401303964563152307.post-2140720872126087822013-02-14T16:24:28.119-05:002013-02-14T16:24:28.119-05:00I, as an autistic, would say "Don't let c...I, as an autistic, would say "Don't let cure advertisements make you think that your child is a pestilence. That kid is here to bless you with its different ability."Anonymoushttps://www.blogger.com/profile/16576844684725684941noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67558023920336450832012-01-09T03:45:37.056-05:002012-01-09T03:45:37.056-05:00If I had a child with special needs I would most w...If I had a child with special needs I would most want to hear <em> you have been blessed with a child who will teach you more about yourself and life than you ever thought posible </em>.Nishahttp://nisha360.com/noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26103004613195230512012-01-04T02:01:52.893-05:002012-01-04T02:01:52.893-05:00i think every parent wants to hear something good ...i think every parent wants to hear something good and hearth warming to their baby,... say something positive first, then have some casual talk with them,after some conversation, go back to your original intention,.. you should tell it in a nice manner, you can also do some research in order to append in some of their questions,..for example: what might be the cause of having that kind of baby,.. answers might be because of improper carriage or maybe because of some <a href="freeadultdatingguide.com" rel="nofollow">relationship issues</a> . Then help them decide what necessary things must be done to the baby...free adult dating guidehttps://www.blogger.com/profile/08275909925175975634noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33244395154682453092011-12-25T01:07:44.462-05:002011-12-25T01:07:44.462-05:00I have an adopted child with special needs. Specia...I have an adopted child with special needs. Special needs we did not know about until after he was home for almost 2 years, he has CP. I would say to that parent that it will be a challenging road at times,but a road that will fulfill you. Your child will teach you things you things you never would have imagined. Actually, I would refer them to that poem, "Welcome to Holland" and well, that says it all. Best of luck to them.Shanahttps://www.blogger.com/profile/08768214843217350062noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68788761386941631902011-12-24T15:33:45.159-05:002011-12-24T15:33:45.159-05:00I don’t think there is necessarily a “right” thing...I don’t think there is necessarily a “right” thing to say. What one parent would like to hear may be opposite to what another would like. For me, it would be similar to Jill and Shasta’s response. <br /><br />My daughter has a very rare diagnosis, and most people aren’t familiar with it and the things that come along with it. For that reason, I love for people to ask questions so they can better understand her and where we are coming from as her parents. Most of the time it’s like the elephant in the room, however. No one acknowledges it or says anything more than the typical, “It will all work out” or something along those lines. If I do bring it up, often times I’m met with silence. I think most people just don’t know what to say or think I’m being a negative. Noah’s Dad had great suggestions of things someone could say. <br /> <br />Also, I think it’s really important for people to acknowledge the pain the parents are going through. The last thing we want is pity, but it would be nice if people would understand that we are grieving the loss of everything we had imagined and planned for our daughter and us as a family. That loss hurts…a lot! As Shasta mentioned, just sitting with the parents and recognizing that the situation just sucks can mean the world.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69943648466168937192011-12-24T01:02:59.879-05:002011-12-24T01:02:59.879-05:00This sort of goes counter to what a lot of people ...This sort of goes counter to what a lot of people said here, but I think the thing my husband and I missed most after one of our twin's diagnosis of brain damage was people acknowledging how hurt we were. Everybody just wanted to skip right ahead to the "it'll all be OK; you guys are great parents; no matter what happens, he'll be loved" part. And that's great. Certainly better than some of the folks on here whose families pretended the baby didn't exist (#@*??). But I've learned the value of just sitting with someone in their pain; acknowledging that their situation sucks for a moment before speeding ahead to the pep talk.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-56434758513110301382011-12-23T20:04:02.996-05:002011-12-23T20:04:02.996-05:00As a mom of a three and a half year old with Down ...As a mom of a three and a half year old with Down Syndrome, I think the most appropriate thing to say at this point is "Congrats! He is gorgeous!" and to treat him much like they would any other baby. They need to follow the parents' lead at this point--if the parents are just posting pictures on facebook and announcing the birth, then it should be left at that. When the parents want to be more open about the diagnosis, they will, and then it's appropriate to say something specific to that.<br /><br />The only exception is if the baby has medical issues and is in the hospital. If that's the case, I think it's appropriate to reach out to the parents to ask if they need anything--a meal, some errands run, someone to take the dog, etc. <br /><br />When Johanna was born, we really grappled with the diagnosis, and it really helped us that our friends welcomed her with open arms and treated her no differently than any other child. Personally, I think that's the best thing anyone can do.Hallie Snoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23687860168627599142011-12-23T18:46:06.137-05:002011-12-23T18:46:06.137-05:00I didn't want to hear "I'm sorry"...I didn't want to hear "I'm sorry". I wanted to hear congrats. Your baby is beautiful. I wanted the flowers and cards<br /><br />We had a fairly good idea she would have Down syndrome, so we'd gotten some of the grief and shock out of the way before she was born. <br /><br />If people really want to acknowledge the special need, I always preferred something along the lines of "I don't know exactly what Ds, autism, etc means, but I want to learn right along with you." Support and love.<br /><br />I'm still not a fan of the Holland and Special mother type poems...Melissahttps://www.blogger.com/profile/06474584473012742915noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-34758845086909403222011-12-23T17:16:35.992-05:002011-12-23T17:16:35.992-05:00So many great comments! One thing I think is that...So many great comments! One thing I think is that the "right" comment will probably depend on the parents, and probably the diagnosis. My twins were born prematurely, and one had a severe brain bleed but no other diagnosis yet (eventually became pretty severe cp). For me, "congratulations" and "I'm sorry" both were entirely appropriate. Too much joy wasn't the right thing, and neither was the "you were given this because you are strong enough for it" types of comments. Ugh. (Now, someone said "I'm sorry" to me just last month, and my daughters are now 4-1/2 years old. That felt very strange.) Don't worry too much about saying the wrong thing. As others have stated, the worst is saying nothing. I appreciated the intent of everyone who said something, even if it wasn't exactly the "right" thing.Andreahttps://www.blogger.com/profile/13546347150603853508noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37703685438804914342011-12-22T18:10:58.331-05:002011-12-22T18:10:58.331-05:00This is a no brainer. All babys are beautiful and ...This is a no brainer. All babys are beautiful and blessings from god. Just congratulate the parents and tell them what a beautiful angel they have. We tend to focus sometimes to much on the disabilities and miss out on the joys.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37188431128153794052011-12-22T16:27:07.751-05:002011-12-22T16:27:07.751-05:00I wanted my friends to ask me questions. I wanted...I wanted my friends to ask me questions. I wanted to talk about it. It was like the elephant in the room. When I brought it up I felt like a downer, the conversation usually fell flat. I don't <br />mind people asking what she has, but I hate when their response is I'm sorry.Jillhttps://www.blogger.com/profile/07726191062135153582noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-7636350043418633512011-12-22T13:10:06.819-05:002011-12-22T13:10:06.819-05:00I think there is no "right" thing to say...I think there is no "right" thing to say, or maybe it depends on the state of mind of the parents. Looking back on when my son was born with DS, I think all my friends and family did say the right things, according to the other comments on this blog. Everybody was happy and saying congratulations, and therefore I felt like my grief and my hurting were being completely ignored. And then, I felt like I was wrong to be feeling that way as apparently everybody else was thrilled. <br /><br />I think acknowledging that things are not as expected is helpful. Above, someone suggested, "I know this is not what you expected, but everything will be okay." I think I would have liked to hear that, along with the congratulations. <br /><br />What I really wanted in those early days was for somebody to be able to take the whole nightmare away and make it not true that he had DS. Since nobody could do that, it didn't matter to me much what else they might say. What I did like was when people came around (instead of avoiding us) and wanted to hold and coo over the baby, and say how adorable and precious he was.<br /><br />That still holds true today. My son is 4 and is a funny, adorable, lively little boy. Family and friends who obviously appreciate, love, and dote on him get a lot of extra points in my book.janicehttps://www.blogger.com/profile/10920380003942573290noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2212190875011471002011-12-22T13:02:08.388-05:002011-12-22T13:02:08.388-05:00This response is overwhelming! My son Billy is 55 ...This response is overwhelming! My son Billy is 55 years old; we didn't have a diagnosis of Down syndrome until he was 18 months old. Even so, people noticed that he had special features and would sometimes look away or sometimes stare impolitely. Rarely did they ask questions or make comments.<br /><br />Now that Billy is a grown man and a joy to our family and friends, I am frequently asked to speak with new parents of babies with Down syndrome. I can say to them with honesty that their lives will be challenging but rewarding. My best example is Billy.<br /><br />I have a friend who is a pediatrician who used to say "I'm so sorry" when she told her patients that their baby had Down syndrome. Then she had a baby of her own with Down syndrome; she no longer says "I'm sorry."<br /><br />Follow us at Grownmannow.com and you will understand.Jane Schulzhttps://www.blogger.com/profile/12469491915306525613noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-44590925189040360822011-12-22T12:16:32.675-05:002011-12-22T12:16:32.675-05:00My oldest has Autism and recently a friend from el...My oldest has Autism and recently a friend from elementary school had a baby with some brain abnormalities (they have not shared her diagnosis)<br /><br />They posted something like "Charolette has arrived. However, an MRI on her brain at day 2 of life showed some abnormalities. Doctors do not know how this will effect her in the future but for now we will just enjoy our princess."<br /><br />I replied "congratulations. My oldest is 8 and has Autism. This was never the journey I would have chosen but it was definetely the journey I was meant to be on"Kristinhttps://www.blogger.com/profile/18302037643126411567noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62734561061127447402011-12-22T11:00:45.786-05:002011-12-22T11:00:45.786-05:00well put! yes, condolences are not for births! whe...well put! yes, condolences are not for births! when braden arrived with Down syndrome, it was not a tragedy at all, and all i wanted to hear was "congratulations on your new baby boy!" those comments were few and far between. i wish folks would just stop assuming... and just ask a tactful question now and then. then they would find that we are blessed, not burdened. thx ellen.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-81863850575055277332011-12-22T10:48:48.548-05:002011-12-22T10:48:48.548-05:00With having a child with Down Syndrome and not kno...With having a child with Down Syndrome and not knowing until she was born the response from family and friends was "Oh I am so sorry"....that really upset me, I asked them why are you sorry, I am blessed to be the mother of this wondeful baby, granted both my spouse and I did go through the greiving process but that lasted all of a a day or so then it occurred to me that having a child with Down Syndrome was not a "death sentence" and it we would be ok. Today my angel baby is 10 years old and the joy of mine and her daddy's life. My words to a new parent with a child with Down Syndrome would be , congratulations as you would say to any parent and also I would say that maybe right now you can't comprehend it but what a wonderful gift they have been given from heaven .Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-30159740061782295772011-12-22T09:07:57.466-05:002011-12-22T09:07:57.466-05:00Oh gosh. 45 comments already and I went and dug up...Oh gosh. 45 comments already and I went and dug up a blog post that I written specifically about this, called "feedback: what to say". Here it is, anyway - http://www.withalittlemoxie.com/2010/08/feedback-what-to-say.html#.TvM4xtVYWSo<br /><br />It's what I wrote in response to all the silence I was feeling when I'd "tell" people Moxie has Down syndrome.Meriahhttps://www.blogger.com/profile/13813502666724137451noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-35095079165906915142011-12-22T06:28:43.956-05:002011-12-22T06:28:43.956-05:00Beautiful baby, has the perfect parents, hurry up ...Beautiful baby, has the perfect parents, hurry up and have another one!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-345649651629155972011-12-22T00:53:33.961-05:002011-12-22T00:53:33.961-05:00we received our diagnosis at 19 weeks...our amazin...we received our diagnosis at 19 weeks...our amazing Gideon is 4 now. I think I would have liked to hear - "that I know it's not what you expected - but it's going to be okay..."Sarah Tnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70373132957706956812011-12-21T23:29:23.152-05:002011-12-21T23:29:23.152-05:00We received the Ds diagnosis at 15 weeks of pregna...We received the Ds diagnosis at 15 weeks of pregnancy, so my experience was a little different -- there was no baby to ooh and aah over, just this shocking piece of news. The most comforting reactions were the two I remember word for word today (and Cooper is now 10). The first came when I called a girlfriend and told her, and her husband could tell by listening to her side of the conversation that something was wrong. She conveyed the news to him and he said, "A baby is coming. It is a beautiful thing. Congratulations." He didn't skip a beat, he didn't belabor the news, and he brought the focus back to the important news -- a baby is coming!<br /><br />The second came from another girlfriend, when she said, "We never know what’s in store for our children. With this diagnosis, you now know one of the huge challenges this baby will face in his life. It is a certainty. But the diagnosis is the only thing that is certain. What this means for his life depends on so much more. This is just a peek, a peek at Cooper’s crystal ball." Her point of view was hopeful, and helped me get past that momentary feeling of 'victim' that came with the news. Her idea that this was just a glimpse into his future helped move me to a place of power -- I as his mother, we as his family, we had so much to offer this baby.Lisa Lilienthalhttps://www.blogger.com/profile/03152500885897993371noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-3607230266389556912011-12-21T19:55:47.810-05:002011-12-21T19:55:47.810-05:00What not to say:
"I am sorry."
"How...What not to say:<br />"I am sorry."<br />"How sad."<br />" I don't know what to say."<br /><br />What to say:<br />"Wow! How beautiful!"<br />"Congratulations!"<br />"You are so lucky to have this wonderful child and he/she is so lucky to have you!"<br />"What a blessing you have been given."<br />"What a PERFECT baby. Just as God planned."<br /><br />I would not change anything about my son if given the chance.<br />Let’s look at Psalms 139:13-16:<br />"For You formed my inward parts;<br />You wove me in my mother's womb.<br />I will give thanks to You,<br />for I am fearfully and wonderfully made;<br />Wonderful are Your works,<br />And my soul knows it very well.<br />My frame was not hidden from You,<br />When I was made in secret,<br />And skillfully wrought in the depths of the earth;<br />Your eyes have seen my unformed substance;<br />And in Your book were all written<br />The days that were ordained for me,<br />When as yet there was not one of them."<br /><br /><br /><br />You see, while it is a shock to find out that your baby has Down Syndrome, there is still this new life that should be celebrated. <br />Down Syndrome is far from the end of the world. Quite the contrary. If everyone had an extra chromisome this world might be a kinder place. I wouldn't change a thing about my son if I could.Propst79noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-59525319732439545342011-12-21T19:27:49.205-05:002011-12-21T19:27:49.205-05:00different situation, as knew there was a 50% chanc...different situation, as knew there was a 50% chance our son would be born with marfan syndrome, which i have, but i wrote a post about what i hoped people *wouldn't* say, called "please don't say i'm sorry": http://marfmom.com/archives/2887<br /><br />i feel like saying you're sorry for the diagnosis places an automatic lesser value on that person, or at least expectations.MarfMomhttp://marfmom.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72026348461445270882011-12-21T17:16:49.980-05:002011-12-21T17:16:49.980-05:00My son was born with Down syndrome, something we w...My son was born with Down syndrome, something we were not aware of until five days after his birth. I look back now and am sad that the joy was somewhat taken out of his arrival. <br /><br />I would just stick with congratulating them on the wonderful addition to their family, so exciting for the older child to have a sibling, etc. <br /><br />IMO, the more important words and actions come later on, when and if they address their son's diagnosis with you.Jaidahttps://www.blogger.com/profile/06755041750426371969noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1170171294923925712011-12-21T16:54:19.134-05:002011-12-21T16:54:19.134-05:00I'm not a mother of a special needs child, but...I'm not a mother of a special needs child, but I have CP, and I think you should just say congratulations. It really depends on how close you are to the person, what would be appropriate to say. <br />Happy Hannukah EllenToonerhttps://www.blogger.com/profile/13035308590730363327noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-90806102098448716362011-12-21T16:22:09.267-05:002011-12-21T16:22:09.267-05:00My husband and I were blessed with twin girls abou...My husband and I were blessed with twin girls about 3 1/2 years ago, and little did we know, but one would be born with down syndrome. One of my best friends had been struggling to get pregnant for over a year, and as we tearfully told her that one of our babies had down syndrome, she told us simply, "So what." That is the one thing I will never forget. Kind of took us by surprise, but to her who had wanted a child so badly, that would have been the last thing she cared about. Both of our daughters are amazing, and beautiful, simply perfect. That really helped to put things into perspective and realize the gift we had been given.Anonymousnoreply@blogger.com