How open are you about DC's dx on social networks/internet?
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I think about this from time to time. Today, a friend from HS posted a pic of her son ready to go to kindie -- he uses a walker. She'd posted recently about him being hospitalized, but it wasn't until I saw his pic that I realized she's almost certainly in a SN situation.
Sometimes I consider posting something -- not sure exactly what -- on FB about DD1's dx. Pics aren't really an issue because there's nothing physical that says she's autistic. But even though we've been upfront with family and some friends, it feels like there's something very different about putting it all out there on FB for people I haven't talked to in years and may never see again in my life. I also sometimes wonder if it's "my" info to share, KWIM? Even though obviously DD1 is still a small child, and it won't be her choice whether or not to share her dx for some time. And it's definitely a big part of my life and our family's life.
I've thought about blogging. More for myself than anything else. But I get caught up in a lot of the same issues, and mixed feelings about putting real names and/or pics out there vs. pseudonyms (always tricky considering the stuff I've seen happen on TB/TN) and in wondering if something could come back to bite DD1 someday when she's old enough to care about it.
So there's the choice to say nothing online (except here) -- but at the opposite end of the spectrum, there are people like Kelle Hampton who basically make a living from blogging about their lives, SN child included. I know I browsed a lot of RDI/autism blogs when we first got our dx that were really helpful in reading about other parents' experiences, and I like the idea of contributing something to that in a small way.
I dunno, just curious to hear other people's take on this stuff.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
Re: How open are you about DC's dx on social networks/internet?
I've thought all the things you said (I find myself often thinking "me too" to your posts).
I think I'm fairly open now, if people ask or it comes up in conversation I have no problem talking about DS's impairments. Thing is people don't ask much so there are alot of people I've never officially told, like cousins and old friends I see rarely or only really on FB. A couple months ago I felt really brave and posted about him, just how proud I am of him and his accomplishments, etc. It did feel good to get that out there.
On the Bump (other boards) I will say he is special needs and sometimes give the diagnosis (but rarely). On this specific board I'll give his diagnosis.
On a couple of private forums, I'm pretty upfront about what he has. The one board they know everything. Shoot, they knew even before my husband (he was deployed when we got the diagnosis and I needed to tell someone right away) and they know of all his accomplishments, set backs, and whatnot. The other private forum I am on I am pretty brand new too. I've told them what DS2 has and what he can/cannot do but that is about it and it was specific to a SN sub-board on that forum.
On FB, I don't say anything. I don't even use names but first name initial when mentioning either of my kids or my husband. I don't post many pictures of my kids either. I'm more protective of what I say the more public place I am at (as in FB where friends/family can see everything vs public like The Bump where I don't really put any private info out there). However, most of my friends and family know.
I've thought about blogging, but if I did that I think I would keep it private. I'm open to people asking me questions and talking about it; but I'm not comfortable just bringing it up and putting it out there because rarely would it be a natural "ice breaker" type of conversation...meaning it would end up being this awkward random subject that would come out of left field.
I do not post stuff about DS on facebook. Sometimes I will "like" things that have some bearing on his dx but not often. This is really the only public forum I talk about him other than the email list serve for his dx. I am mostly a lurker there though.
Beside the hearing aids that are hard to miss, I don't want to 'out' him more than necessary. At the end of the day, making his dx public will not help him anyway. Maybe we'll get lucky and he will be less affected, able to get a job, marry etc. That hope is what keeps me from making his story more public. It's his story to tell, not mine.
I only share on a "need-to-know" basis...which definitely does not include FB and all of the 55 billion people that frequent it. It actually doesn't include most of our extended family. We've only shared with the closest family members and I personally have shared with maybe 4 of my closest friends.
So far, I haven't met a person (besides pro's observing my child for a specific reason) that would guess that DS has special needs. So, I don't really see a reason to shout it out to the world, cyber-world or otherwise...I only see negatives associated with that at this point...judging, pity, isolation, stupid questions, or accusing me for being dx-happy....you name it.
This all may change as he gets older and things may get more obvious, and I realize we may have to share more, but it should also be his decision. So, we're laying low.
I blog about both the girls, I've never thought about what would happen if they found it..I know people who have deleted blogs & you can't find them after that.
As for FB I post often about what appts we have, etc.
My way of dealing with everything is being very verbal and open about it. I had a hard time in the beginning & I was working FT so I had to explain the situation. If someone thinks i'm dx happy they can go screw themselves as I explain how our bed, hallway & living room were covered in blood as I hemorrhaged on the way to the hospital.
I found that too many people were confused as to why Peyton was always in therapy/at the doctor so I had to give specific reasons to shut them up.
As for Morgan, most people know she was early and they assume that's why she is getting therapy, to catch up. They also know i've had to be with her in the hospital for extended stays when she was sick.
This is pretty much me too. I feel like I need the support of a board like this, but I'm a private person and am a bit paranoid about putting too much information out there, especially sensitive info about my kids.
I'm in the minority, I guess... I certainly don't shout about DD's dx from the roof tops, but autism is a big part of who she is, and I just can't reconcile ignoring it. I certainly don't volunteer it to every person we encounter in our travels, but on FB, where I'm somewhat selective about who I friend? Sure. I even solicited donations for our autism walk on FB... one simple post about yielded over $1500 in donations. And I've never once received pity, judgement, stupid questions, etc... We get support. That's it.
52 Choices For Better Health
My FB is set to private and I am only friends with family members and close friends. I do talk about major events - trip to the hospital, etc. I also solicite for the Cystic Fibrosis foundation.
I talk more about it on the bump because it is anonymous. I think most of the bumpies on my reguler boards know, but occassionally - like when I posted we were done having kids because of our crappy dna - I get a comment like 'OMg I know what you mean my kid has eczema'.
I think I talk about it because most people don't understand. I get comments like 'he'll grow out of it' All. The. time. IRL. DH's family is convinced that their chain smoking will not harm him. *Head Desk* and can't figure out why I won't let him around them.
Because my daughter has Down syndrome, people will notice. For the first few months on FB, I only mentioned our NICU stay. Eventually, I shared my blog on there... most people were VERY surprised by her diagnosis. (We'd know since I was 11.5 weeks pregnant.) I think it helped that people saw her first and thought she was a beautiful baby, it helps them see her as a CHILD with special needs, not as a diagnosis. Now, pretty much everyone knows, my blog is very public, and I talk about stuff like our Buddy Walk for Down Syndrome.
I think as Ellie gets older, she'll have more obvious physical markers. My rule is that I never write about anything that I think would embarrass her down the line. (Ya know, making guesses about what would embarrass her in 18 years!)
My kid is only 5, so who knows, my thoughts on it will probably change as he ages. But to me right now this thought process is invoking shame, and I never want there to be any shame associated with who my DS is. If I'm unwilling to admit to family and friends his impairment, if I just walk around pretending there is nothing going on, isn't that implying that I'm ashamed? By talking about it aren't I helping to fight the stigma of having an impaired child? When people see my DS acting fairly typically and then learn that he is Autistic, doesn't that help to dispell some of the stereotypes associated with Autism?
And I do realize that it is his dx, his impairments, but our entire family is greatly effected by it. So much about our life right now is because of his impairments, it's huge to all of us. My DD's have been pulled around so much going to therapies and drs and school. Their nap times, bed times, extracurriculars have revolved around his needs. So while I understand that it's his to own, we are right there with him.
ETA: I'm not judging how others deal with their child's impairments, imo you have to do what you feel comfortable with. I'm just giving my opinion based on where I am now. I hope that makes sense.
I am not on FB. On LinkedIn I am a part of a group of prents of kids with ASD.
I do not talk about the Dx unless absolutely necessary. I was not pselected for a job because a prospective employer googled me and saw me responding on a board with my real name, and assumed that as a SN parent I will make a poor employee.
I now work for a fantastic boss who is supportive of my schedule. However, people judge, and I just do not need someone labeling me or my son.
52 Choices For Better Health
Well said. I have a blog about DS which is not google-searchable and is about the joys and challenges of his life, not mine. I created it when he first fell ill at 3 months, as a way for loved ones and friends to follow his story, and save us from explaining a zillion times. I don't post links to it on my FB wall, but I do have a link in my FB info page. Those who want to figure out a little more about him or us can check that out. I did not sign up to be a role model of handling adversity with grace, but I take that challenge willingly. I do not complain on FB. I do ask for prayers when DS is hospitalized or having trouble controlling his seizures. I will speak up when I see people mocking those with disabilities. It's uncomfortable for me, but if I can make life a little better for those living with disabilities, it is worth it.
Finally, I want to reiterate that FB is what you make it. 55 million people (or however many) do not see my page. I am not searchable. You can only find me as a friend of a friend. And until I friend you, all you see is my profile pic. And if I friend you, I may keep you in a list of people who can only see one album and not my wall, and not my link to my blog. Finally, I turn down friend requests. If I would not want to stop and talk to you when I see you at the grocery store, I don't need you combing through my vacation pictures. Oh, and I also have no problem defriending people who post offensive crap that is upsetting. I use FB to get and spread joy. That is all.
To me FB is a great social life-line. It helps me connect and have a mental break. I think that is good for all mamas. I am not a phone talker, so this is what works well for me.
Great thought-provoking post!
That's great that you can be open about it.
I just feel really funny outing my kid without his consent. I am not sure about everyone's ages on here, but it may also be a generational thing. It would be interesting to see if there is a connection between those of the internet age and those of the 8-track tape age.
I don't personally need my kid to be poster child for his dx of the day. Maybe when he is older and if he ends up being more affected by his issues it won't matter if I out him. He doesn't look "typical" so people probably know something is up.
I guess I am just hoping that someday he will be able to understand his diagnosis and then decide how open he wants to be about it. There is an itty bitty spark of hope I still nuture that he will be able to live way beyond the limitations of his dx's. I have struggled with this issue a lot lately. Good Discussion!
I have been thinking about this a lot. There are so many facets to the issue.
One facet: How do my child's special needs define me as a person in the online and RL community?
Do I vent about it? Do I joke about it? Do I brag about accomplishments? Do I hide that whole side of my life, beyond a few pics every now and then? Do I share details of medical appointments and events? I think a lot of these answers have to do with who you are as a person in general. I personally find people who brag every time their kid poops in the potty annoying, so I don't do that, regardless. I also can't stand whining, so I try to avoid doing that. I HATE being pitied, so I only post happy or remarkable things about our lives. But this is all who I was pre-DS.
Another: How are different special needs viewed in my culture?
I thought about the second question a lot. DS has epilepsy among other neurological issues. 100 years ago, and still today in some cultures, epileptics were thought to be cursed or possessed. I suppose if I lived in that culture, I would do my best to hide DS' seizures so that he could have the best opportunities in life. Some issues are still considered mysterious because we don't have the science yet to understand them fully. There is so much misinformation and fear out there. Some/many health issues have one name that covers a whole spectrum of ability levels and symptoms. People can make incorrect assumptions about your child based on the DX name. Taking all that into consideration, I can appreciate why parents have kept DX details to themselves. You love your kid, and if they can, for lack of a better term, "pass" as typical and skate by without the unfair treatment society can throw at people with disabilities, well, why not let them, if that is what they want to do?
I guess what I am saying is that I don't think that any person here is right or wrong (not that anyone insinuated that, either). We all have to take our personality type, our child's situation, our child's temperament, our family/friend support system, and so many other things into consideration as we suss out what is a comfortable arrangement for our family.
Hope this makes sense. It's been a long week!