"Just three weeks ago, I found out that our two-months-old boy has a genetic mutation," the email said. "I am still at a grieving phase and didn't tell my friends or my many family members about the baby's situation yet. I wonder how you broke this news to your friends and family? I find it extremely difficult since my emotions are complicated. And I tend to isolate myself. Any insights or advice?"
I knew what this mom was feeling, because I wrestled with it right after Max was born. I had a nice email birth announcement all prepared, the addresses entered—all I had to do was fill in the date, name, height and weight. Then Max had seizures, and doctors discovered he'd had a stroke. It took me at least a day to let my parents and sister know. I don't remember exactly what I said, but I was straight up: "Max had a stroke.... Yes, babies can have strokes.... We don't yet know." I said the same to a few close friends.
I spared my family the possibilities doctors had warned us about—that Max might never walk or talk, that he could be cognitively impaired and have vision and hearing issues. I wanted to ease them into this. They'd been so excited for Max's arrival and I couldn't bear for them to be devastated.
I wasn't quite sure what to say to other people. It was difficult to think straight; I was reeling from the shock and sadness. The message I finally sent out: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."
Looking back, keeping things general at first was the best thing, for us. Dave and I were ourselves floundering for answers and struggling to not drown in grief. It would have been too much to share more. Over time, we'd have more detailed conversations with friends and family about risks, concerns and fears. And over time, as Max grew and flourished, the grief would recede—replaced with real optimism and hope, and the joy that he brought us.
How did you tell friends and family your child had special needs?
I knew what this mom was feeling, because I wrestled with it right after Max was born. I had a nice email birth announcement all prepared, the addresses entered—all I had to do was fill in the date, name, height and weight. Then Max had seizures, and doctors discovered he'd had a stroke. It took me at least a day to let my parents and sister know. I don't remember exactly what I said, but I was straight up: "Max had a stroke.... Yes, babies can have strokes.... We don't yet know." I said the same to a few close friends.
I spared my family the possibilities doctors had warned us about—that Max might never walk or talk, that he could be cognitively impaired and have vision and hearing issues. I wanted to ease them into this. They'd been so excited for Max's arrival and I couldn't bear for them to be devastated.
I wasn't quite sure what to say to other people. It was difficult to think straight; I was reeling from the shock and sadness. The message I finally sent out: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."
Looking back, keeping things general at first was the best thing, for us. Dave and I were ourselves floundering for answers and struggling to not drown in grief. It would have been too much to share more. Over time, we'd have more detailed conversations with friends and family about risks, concerns and fears. And over time, as Max grew and flourished, the grief would recede—replaced with real optimism and hope, and the joy that he brought us.
How did you tell friends and family your child had special needs?
We did it just as you did, general at first and then more precisely after some time. After all, we had to grow into our (not) diagnosis. This means that we as the parents had to get accustomed to it all over the years as well. It also still depends who asks me and how close our relationship is.
ReplyDeleteWe had to grow into the diagnosis, too—and all the realities of it. Well said.
DeleteOur son's issues surfaces beginning at about 11 months with symptoms easily written off as "colic." Then as things evolved, it became more troubling. Since it took four years to get a diagnosis, friends stuck with me like glue wanting to listen and be there for us. They were genuinely very worried. Family, on the other hand, seemed to relax in denial, encouraging us that he would "snap out of it." Even with a not very hopeful diagnosis, we find having a name for the disease, Mitochondrial Disease, helps people be able to get behind a cause to give them a way to fight for Garrett. On the other hand, some are still in denial and will likely always be.
ReplyDeleteIf I had it to do over, I would give family and friends the info and let them process and speak with me as they wish, but I would not worry about their personal take on things and how they process it. I wasted way too many minutes wondering about why people think what they think!! Useless!!!
I cannot imagine how I would have handled knowing early on as you ladies did. I probably would have blurted out the cold, hard facts since I would have been so worried and scared that I would not have been too concerned about others' feelings. You guys have huge hearts!!!!
Ellen, as always, thank you for your huge heart for moms and their kiddos!! You inspire me!!!
We dealt with denial, too. I still remember someone staring down at baby Max and saying, "Oh, he looks perfect, he'll be FINE!" and all I could think was, "You didn't see the MRI scan."
DeleteI chose to have everyone meet Gabriel first, because once you meet him, it's hard not to adore him. So then, I explained he has autism. He is a child first, who happens to have autism... so that truly is something you only need to know second ;) I've lost at least one friend but that is fine with me.
ReplyDeleteLOVE your approach. And as for losing a friend, well, that happened to me too after Max was born. You find out fast who your true friends are.
DeleteWhen Miss 17 was born and diagnosed with Down syndrome we handled it pretty much as you did, although it was probably a bit easier having a firm, well understood diagnosis. Not easy, mind you, but at least a known quantity.
ReplyDeleteHowever, I find it much harder now (odd, eh?) to know when to drop in to the conversation with new people I meet, like work colleagues, my other kids' friends parents etc. it's not too long in to getting to know someone that I really have to provide that context otherwise conversations don't make sense - like, if I mention that Miss 17 competes in Special Olympics without first saying that she has a disability it might be misunderstood. I don't want new friends to think that i don't want to talk about it because I do and it's part of who we are as a family. But I also don't want to disability-bomb people either! I'm not a rah rah down syndrome is the most wonderful thing in the world and my kid has more chromosomes than your kid because it's not wonderful, it's just part of who she is. But I guess people need to know this about her to understand our lives and what we do. Make sense?
Also, I'm probably seeking those kindred spirits who jump up and say Me too!! Me too!! and then we have this awesome thing in common.
For the new mom in your post - if at all possible do all the new mom things you would have done and don't miss out because you don't know how to talk about it. Join that mom's group, splurge on that gorgeous but overpriced baby outfit, get those 6 week baby portraits, join the stroller jog group... and just get out there. And keep an eye out for PND...can sneak up and bite you when you're most vulnerable and getting help is so important for you and baby.
Oops.... back to work :)
Excellent advice! Dressing Max in ridiculously cute clothes and doing photo shoots was great therapy for me. I love the phrase "disability bomb." I'm at the point where I do tend to say straight up, "I have a son with cerebral palsy" but the second anyone says "Awwww" or gives me the pity stare, I'll say "Don't feel bad, he's an awesome kid and he's doing really well."
DeleteWith the two oldest of them it was obvious by the time they were toddlers something was going on. The twins not so much, until they were about six. Theirs were not physical disabilities. We were suddenly in the thick of it when S got sick in 2010. Suddenly we had a chronically ill child, in a wheelchair and we were being questioned by everyone. When S had his stroke in 2011 it was all the more amped up when we had to go into public. I didn't appreciate the scrutiny to say the least. I have a problem with nosy people:)I had gone to Portland with a 'healthy'(in remission) child and came back with a toddler(cognitively). It was a shock we are still reeling from. I have the greatest admiration for parents who struggle daily, trying to find a balance for their kids.
ReplyDeleteSorry, forgot to say school told the other students what had happened, one teacher offered to teach sigh language which S had taught himself in hospital. As for family there is none. You just tell them in your own time and as much as you want to.
DeleteThose are some good teachers you have on your side. Melissa, I don't know S's full story, but I hope he is coming along. The brain has much potential to overcome trauma, as I've learned from Max.
DeleteSince my kids were adopted and came to me with their disabilities, this was less of an issue, but it did come up with my Gabriel, because he was diagnosed with Psychosis NOS the summer before he entered high school. I had been waiting for this shoe to fall for a long time, because he came to me with a very strong genetic history of schizophrenia. I was upset and wanting some support, I suppose, so I sent an email to my brothers. I don't know why I did that, as our family is not particularly close. One brother wrote back a terse note...sorry to hear that. The other brother's response was so hurtful: the only response was "Have you made sure you have security on your email account?" Talk about a kick in the gut. When my son actually developed full-blown schizophrenia, I mainly tried to avoid telling my parents the actual diagnosis. It would have upset my mother so much.
ReplyDeleteWow, Galen. That's harsh. I can't imagine he hasn't had regrets for saying that.
DeleteI knew while I was still pregnant, so when I found out I decided to let everyone I knew know just about everything I knew. I basically posted something on my blog and shared the link with everyone. It was something along the lines of, "our baby has a genetic mutation, she is very small and has stopped growing, has a huge heart defect that she doesn't qualify for surgery for since she is too small, and we'll be lucky if we meet her at all." I'm glad I did it this way, it was a way of preparing everyone for when I gave birth. I was afraid that if she died and i hadn't warned people i would get a lot of congratulations on the new baby sort of comments, and i couldnt handle that. People were more sensitive, and almost came along for the ride with us, supporting us the whole way. I didn't want to have to tell people individually over and over again. At the time it seemed like I couldn't handle that either. I did tell my mom first over Skype, followed by my dad over Skype, I felt like I couldn't spring it on them like I did the rest of the world. By the time she was born just about everyone knew she was going to have issues, and I think knowing that people knew made me feel like I could focus on her rather than fielding questions. I suggest you do whatever feels right, if there's anything I've learned through all of this it's that there's hardly ever a right or wrong way for anything.
ReplyDeleteThat's so true, it's really about what works for you. I think it can help to have a central place to share news; I know other moms who've done CaringBridge pages.
DeleteWe found out that my daughter has a chromosomal abnormality--22q deletion syndrome--just before she turned 1. Telling family wasn't so hard, except some of them refuse to accept that she might not be a typical kid, which was very frustrating in the beginning when I was worried about everything. She is only 18 months now, so I still worry a lot, but I don't let myself dwell on the worst case scenario as much as I did when she was first diagnosed. I have told most close friends--but it is hard because they don't know what to say. They say sorry, which doesn't feel right. And they ask questions, but we just don't have many answers yet because there are 180+ potential symptoms and there is no way to know which ones she will have. It's hardest for me when people start talking about schools or college, and I think I don't know if my child will go to college. She might need to be in special needs classes--so spending my time worrying about which neighborhood to live in or which private school I should send her to is just not something I do anymore. Sometimes I just stay silent and sometimes I say we have no idea what she will need so I don't even think that far ahead. For me, it's really important to have places like this and support groups I belong to, so it's not so lonely. Otherwise I just do what feels comfortable for me and try not to worry about whether it makes them uncomfortable and if I don't like what they're saying, I talk to them a lot less.
ReplyDeleteI've learned to accept that people say "sorry" because they just don't know what else to say. I also had friends who asked questions, including one who kept asking "Is he talking yet?" It was painful. I finally said, very straight up, "I know you mean well but please don't ask me that, he's on his own timeline and we just don't know."
DeleteWhen my son was diagnosed a few weeks after birth, I let my husband tell my mom and then let my mom disseminate information to family and family friends. Not the most personal or responsible, but it was the best I could do at the time. For friends, it took a bit longer. I ended up writing a group email to my closer friends explaining my situation and then literally answering FAQs. I found it was a great way to inform the people who I thought should know in a very controlled environment, sharing only information that I wanted to share without answering questions on the fly. I was also able to avoid seeing their confused and scared looks. I kept it optimistic and in return got a lot of great support.
ReplyDeleteFor other acquaintances, I accidentally published a link to my blog on facebook around when my son was about a year. It wasn't the most ideal situation, but once I had realized what I had done, I just left it. I got a lot of encouraging words from people I hadn't talked to in years.
I still struggle with this question though. I never know when to bring my son's diagnosis up with new people I meet or in work situations.
Cyberspace sharing has definitely made life easier for moms like us, in many ways. Beth, I don't bring up Max's CP unless it's relevant to the conversation—just don't feel the need to. Same as I'd never spontaneously bring up, say, Sabrina's charming habit of having tantrums.
DeleteMy son started having seizures when he was a day and a half old. We had no idea what caused them (and kinda sorta still don't and he'll be two next month). Dr's thought it was going to be a one time thing so we tried not to sweat it until he was still having seizures every day for the next few months. We only told immediate family and some close friends. I made my mother tell the grandmothers, aunts, uncles, etc. It was too much to be making dozens of phone calls. I would just cry talking about it and I simply didn't have the time since we spent most of our time in doctor's offices. After a few months passed I wrestled with what we'd say if we'd run into friends/acquaintances while we were out. I decided to write a note on facebook to let everyone know what we had been going through with our little boy. That way when we did run into them, they already knew, and it saved us from having to explain everything tons of times. Then a few months later we realized he also had a visual impairment, and we did the same thing. I actually started a blog last fall to keep everyone up to date with any news. It's so, so much easier. I can just refer people to my blog, email the link, post an update on facebook and then everyone knows and I haven't had to open my mouth and risk a crying meltdown. Which still happens sometimes, but we're only human. But it gets better, it really does. For me the first year was very difficult. Small talk with strangers is what I'm having difficulty with now. Our little boy doesn't sit, crawl, walk or talk. He flails himself about and shouts a lot. We recently found out he has scar tissue on his brain so that was another emotional time. I'm grateful for the blog and being able to express how I'm feeling. I don't feel guilty if I'm crying behind the computer screen and I'm sure it's saved me lots of awkward moments having to discuss certain things in public.
ReplyDeleteI hope everything get better for you xo
Max had seizures on his second day of life, I can so relate—I couldn't talk without sobbing, either. But, couldn't agree more, it DOES get better, so much better. In terms of small talk with strangers, having a handy catchphrase helps like "He's got some delays, but he's coming along!" If I've needed to explain a behavioral issue, I'll keep it vague: "I'm sorry he's kicking your seat, he's got some sensory issues, we'll do our best to make it stop." !!!
DeleteI found out that my son had a genetic disorder when he was one week old. I posted a similar question to yours on another web forum and got some very helpful suggestions: http://ask.metafilter.com/232344/Lets-not-just-stand-around-my-baby-crying .
ReplyDeleteIn the end, I appointed two friends to spread a simplified message to our other close friends until I felt strong enough to tell them the whole story. I let my parents tell all the other relatives. I told my colleagues initially that my son had "health issues," but being that I work in a hospital, once I saw them in person (after a couple months) they really wanted to know the clinical details, and I was okay telling most of them. And while I've posted baby photos on Facebook, I haven't posted a single thing about his diagnosis, since I figure the only people who should know are the people who will see him in person. If acquaintances ask about his health, I usually just tell him that he has some health issues and is on some intense medications - no one has pushed me for more info after that.
That said, I'm still grieving four months later. We've had to make some very large, difficult changes to our lives post-diagnosis, and I'm scared of what we'll have to deal with in the future. But the day-to-day reality right now is OK, and I hope that the day-to-day reality down the road will turn out to also be OK.
It's ALL about the day-to-day reality, and always will be. Because whatever the future holds for your son, you will evolve into it, day by day. The grief takes awhile to abate, but it does, I promise.
DeleteI love your blog! I am struggling with this still. Some family members are in denial because they think that her milestone delays are due to her prematurity and not CP. They say that Sophie will be a perfect child one day. My answer was, SHE IS ALREADY PERFECT! I felt the need to send a message once we got a diagnosis because Sophie received many toys as Christmas gifts that were not appropriate for her, eventhough they would have been perfect for another child her age. I cried for a while while looking at a beautiful toddler trycicle that she received from her uncle. I decided that it was better to educate our closest family and friends in order to avoid geartbrakes in the future. This is how I broke the news:
ReplyDeletehttp://iloveyoutoeternity.blogspot.com/2013/03/diagnosis-breaking-news.html
Lauren, that is THE best answer! I loved your post. At some point, I started telling family exactly what to get Max for birthday presents; his therapists would make recommendations, and I would pass them along. Win win! He got fun stuff that would help his development, and my family wasn't left wondering what to get him.
DeleteMy advice to the mom: tell them when you're ready those who matter won't mind and those who mind won't matter.
ReplyDeleteWow, really don't remember a lot of what happened during the
ReplyDeletefirst 6 months of dealing with the not quite complete diagnosis.
Someone must have told somebody. We spent a lot of time
educating ourselves. Even now, people assume kids grow out
of things that are lifelong because it is too difficult for
them to consider bad things can just happen.
That, and I think people just don't understand. As parents, we become certifiable medical experts about our kids' diagnoses. Sometimes I forget that not everyone understands, for example, just how much CP can mess with Max's muscles, and always will.
DeleteWe got to tell our friends and family twice once for my son who was born with a hearing loss and the second time for my daughter when we discovered that a brain tumor took most of her sight.
ReplyDeleteMy son's hearing was screened the day after he was born, his hearing loss confirmed a month later. This was pretty easy because Jay was a newborn and so visually responsive to his aunts, cousins and grandmothers. Now he hears with a cochlear implant and the conversations are a bit easier due to the visual cue of his processor and loop.
In our daughter's case we discovered that she couldn't see the blackboard during her 4th grade year; we had no idea how limited her eyesight was. Our larger concern at the time was her tumor which required immediate attention and during the course of chemotherapy, we kept every informed through CaringBridge. Years later, it is still difficult for our friends and family to realize how limited her sight is and is a shock when she uses her white cane in crowded situations.
There is definitely a common theme here of people's denial about our kids' challenges. Sometimes, I've thought this is because they think that if they make like things aren't so bad, we'll feel better.
DeleteWe just told people as the subject presented itself. At first we were only working on the assumption that she had hypotonia (low muscle tone), then scoliosis, then epilepsy, and so on. After a muscle biopsy in Nov 2012, and waiting 9 weeks for the results, we learned in Feb that our little girl has Rett Syndrome. A spontaneous genetic mutation in the MECP2 gene.
ReplyDeleteI called family and close friends and then posted the results on my blog: http://hypotonicworld.blogspot.com/2013/02/the-diagnosis-isdrum-roll.html
I'm still struggling with the diagnosis and what it means for us as a family. So, until I get a handle on it then I am just loving on my little girl and doing everything I can to make sure she gets/has whatever she needs.
And that is just what your sweet girl needs. You don't owe anyone explanations, focus your energies on what matters most.
DeleteMy son had trouble at birth starting with underdeveloped lungs/oxygen deprivation. They basically just grabbed and ran with him as soon as they noticed. My husband went with him and I was left alone in the room. I had no idea what was happening and I wasn't allowed to move, but I had my phone so I used it to post on Facebook; that he was born, but was struggling and we desperately needed prayers. A few hours later he was transferred to a NICU at a better hospital, so I discharged myself and we followed. They said he just needed oxygen, but we now know, none of us had any idea. I spent every second at the NICU with him, 90% of it alone, so I kept updating Facebook several times a day on how he was doing, from the C-PAP, the bili-light, the NG tubes, until the day they told us he was ready to go home. We thought things were finally perfect, until they during discharge the doctor said "Don't forget to keep an eye on the hypertonia, it might mean Cerebral Palsy." Nobody had mentioned it to us earlier we were floored. We found out after 8(ish) minutes of oxygen deprivation at birth he was apparently high risk for brain damage, and already showed signs, but nobody had mentioned it to us sooner. We started freaking out so the doctor said "Well, I bet your kid, will be the one who beats the odds." So we kind of dismissed it, but put it on Facebook as a thing to pray about but that it wouldn't really be an issue. But as he got older and more and more problems and delays popped up I kept updating Facebook with new things to pray about for him, unaware these were his "special needs." It wasn't until he was about 9mos that I realized these were the CP symptoms, and we got our first evaluation at just after his 1st birthday and our diagnosis 11months later. The whole time though, I had kept our prayer team on Facebook updated when we found something new. I would post "today we found out... basically it means... these are the things we should be prepared for.. but we know he'll wow us again this time just like last time, let me know if you have any specific questions" and people that wanted more information would message me, or call me. By the time we got our diagnosis we all knew it was coming and were grateful for it. Our Facebook team found out officially an hour or so after we found out officially. Facebook was my lifesaver from the moment he was born, I never had to call person to person to repeat the news. I didn't even have to say 'brain damage' or 'cerebral palsy' out loud until after we got the diagnosis (apparently it's HARD to finally say it out loud for the first time) and especially in the hours after birth when I was in the room all alone, I got message after message of "you can do this" & "i'm praying for you, and so is everyone I know, and everyone they know, and they know, etc.."
ReplyDeletePeople often think her cp will get better and go away. I have to remind them she will always have it.
ReplyDeleteShe was a preemie so her announcements went out a month after she was born, when she came home.
Diagnosis was gradual at about 2. She has progressed well at age 6 but it isn't going away.
My grandson spent the first 8 weeks of his life in NICU and had two surgeries, one for a trach and one for a G-tube. So there were obvious physical indications that there was a problem. My daughter and I used Facebook ALOT to update family and friends about Noah's condition. It was easy to convey the details without all the emotions. Then, when Noah was 8 months old, we got the diagnosis of a really rare genetic disorder. We have spent a great deal of time educating ourselves about the disorder since the genetic testing just got approved by the insurance company 2 weeks ago. Again, Facebook has been a lifesaver for us. Not only were we able to join an on-line support group of families with this same diagnosis, we were also able to spread awareness about Noah's diagnosis
ReplyDeleteMy little girl is 3 and a half and we still have no diagnosis for her global delay: birth went fine, no apparent complications. I knew early that something wasn't right, but lots of family told me she "would be okay". With hindsight I realise they were trying to say that whatever the future held, we would cope with it and be okay.
ReplyDeleteAs much as this was true, I needed them to recognize my pain, and that I didn't/don't feel strong, or prepared for this version of reality. We are isolated and live in a rural area with no contact with other special needs families.
It's interesting to see how people have used facebook to cope with this, I refer to it indirectly, so those who know understand but don't feel I want to "post my pain".
Technology HSS changed things a lot since my daughter was born in 1975! She did not breathe on her own for seven minutes, then had a seizure on her second day of life. We were told to "wait and see", but St seven months, the pediatrician diagnosed CP. She had not met the most basic milestones like sucking her bottle long enough to get enough nourishment or holding her head up, but she started stiffening her body and crying for hours at a time. The diagnosis was almost a relief--I kept getting messages that I must be doing something wrong or she would do all the right baby things. I told my best friend, my boss and my mother. I left it to them to tell others. I was exhausted, stressed, and entering the non-stop life of doctor and therapy appointments. My husband left it tome to feel with people, and that was one of the few times in my life when the thought of having to talk to people was too much to bear.
ReplyDeleteMy 2 year old son was just recently diagnosed with Mosaic Down Syndrome. I texted my mom because I got the news while I was at work. It's a rare form of Down Syndrome. He is smaller, he still wears size 12M. A lot of my husband's family like to blame his habit of smoking cigarettes or the fact that we are so young. They even like to say that i'm so busy to sit and feed him a good meal. I am only 22 years old so I got pregnant at 19. My pregnancy was very hard because he was unplanned and I didn't have a job and my husband was laid off. Every aspect of having my son was a struggle. He is truly my angel, though. My husband's family have been a little supportive, my son's Godmother (my sister in law and best friend) is one of my main supports. I feel very lonely at times because my husband doesn't like to talk about it much. It is difficult because he seems so normal to us at home, but we go out and see other kids his age and it hits us. It's only been 3 months that I found out, but since he was a few months old we wondered why he stuck out his tongue so much, why he struggled so much to learn to walk, why he made weird noises, and some nurses would mention how low his ears were or how big his forehead was and i would call them crazy, but now i wish i would have asked more about it. I love your blogs they have been so helpful, my son is so perfect to me with or without disabilities. He helped me out of the rut and gave my life purpose. I was headed down and God sent him to bring me back up.
ReplyDeleteI wrote it on my blog- Now that I think about it, it probably was a punch to the gut to my family..... I don't know if it was the right way or not? I didn't know what else to do, but write.
ReplyDeleteMy issue now is telling my new friends. We just PCSed (moved) to Alabama and we're meeting new people everyday. I tend to just blurt it out-"My son has autism." It's random, and awkward.... but I feel it's best to just get.it.out.there. instead of the stares, and puzzlement looks.
"Hi, my names is Jessica, and I'm a autism mom."
"Hi, Jessica!"