Oh those facebook updates...

zoeyandsummersmom · December 2013

They never stop stinging do they? So glad your 10 month old took his first steps. Wish my 2 year old would have any interest in walking indepently and I wasn't talking to our PT about a gait trainer. SIgh. Vent over. Dear Mr. Zuckerberg, please have your army of developers create a way to block updates based on subject.

realisticdreams · December 2013

The one time I saw a therapist last year she basically said facebook was awful for people dealing with stuff. I have to ignore so much on it now and rarely use it. Hugs.

Assembly_Reqd · December 2013

Those posts do sting, but I try to reframe the experience. To me, those video clips of kids who are basically the same age as Nate are 'Research'. I love them because they amaze me. It is a miracle to me how it all comes together.

Our day to day interactions are with other kids who have delays. Of course this makes me feel better because there is always a kid having it worse than yours or having different challenges that you are glad you don't have to deal with. The Reality Check of Facebook can be a great motivator. How are those kids interacting? What toys are they playing with that I really should introduce to Nate? What the heck are they climbing on? What a great idea!..yada, yada, yada

You can't block out reality forever. If your child could potentially participate in the 'typical' world, you need to know what 'typical' looks like and figure out ways to get closer to it.

MirandaHobbes · December 2013

Another thing I remember is that people only put the happy bits on facebook. I'm totally guilty of this. The first (and practically only) time my kid sat still long enough, and our cat sat still long enough, for them both to share a little snuggle on the couch- you bet that picture went on FB. Picture of DS crossing the finish line of a 1 mile race? Straight to FB, even though I had to bribe him with Snickers bars to finish the race. So I remind myself that none of these pictures show the nitty gritty day-to-day we all go through.

macchiatto · December 2013

-auntie- said:

Yeah. It never gets old.

That said, the growth of the skill set of a typically developing child is a miracle to behold and it's totally understandable that parents of such a child should celebrate that. They aren't doing this to hurt you. But it does hurt because it reminds you of where things are challenging in your own life.

My son's peers are older, so we experienced the braggadocio in a more intimate and personal format- in person. The last couple of years of high school were almost unbearable. The posturing of college visits, multiple application essays and scholarship counts. FTR, none of these wizard kids about whom we'd be spoon fed progress reports ended up anywhere more glamorous than Penn State or Pitt. DH and I endured this in the full knowledge that said scholars were blowing weed, drinking and generally up to no good.

What I didn't see coming, was that my friends with older kids are starting to become grandparents, a gift I'm sure will not come our way. It's like the cycle is repeating itself. If you think parents can be obnoxious, wait'll they become grandparents.

Maybe it's best to take a few steps back. Or hide the worst offenders.

The bolded is so true. I can relate to both "sides" since I have one typically developing twin and one with delays/SN.
I hadn't thought about grandparents. I'm sorry.

And it's also so true that people tend to just post the high points on FB (other than the chronic complainers ). Always something to keep in mind. Many of my FB friends have no idea what we've gone through with DS other than his hospitalization 3 years ago and recent MRI. I also rarely mention my MS (though recently I've done so a few times). Not because I'm trying to hide anything but because I don't want to bring on unsolicited advice or have people treat either of us differently because they don't understand our diagnoses/issues.

lite-bright · December 2013

MirandaHobbes said:

Another thing I remember is that people only put the happy bits on facebook. I'm totally guilty of this. The first (and practically only) time my kid sat still long enough, and our cat sat still long enough, for them both to share a little snuggle on the couch- you bet that picture went on FB. Picture of DS crossing the finish line of a 1 mile race? Straight to FB, even though I had to bribe him with Snickers bars to finish the race. So I remind myself that none of these pictures show the nitty gritty day-to-day we all go through.

Absolutely! I do it myself. So yeah, I'll post about how amazed I am that my kid is such an avid, early reader and very like me that way. But there is almost zero evidence on FB that she has ASD -- I'll like things here and there that are ASD or SN-related, but I haven't made it obvious that the connection is DD1, because I think it's better for me to be very circumspect about that on FB so that she ultimately has some control over that information.

I'm pretty open about it IRL, though, so the people who know us and know her at all well know that there are challenges along with the FB bragging; but anyone who isn't a regular part of our lives probably thinks we have a typical kid or even one who is gifted.

Justinlove · December 2013

-auntie- said:

That said, the growth of the skill set of a typically developing child is a miracle to behold and it's totally understandable that parents of such a child should celebrate that. They aren't doing this to hurt you.

Having my SN child first, the above is sooooo true! DH and I are constantly amazed at how easily and quickly things have come for little A that were so much harder for LA. For example, I can remember spending HOURS on the stairs with LA and our PT teaching her how to climb up. Little A was up three stairs 2 weeks ago before I could blink an eye. Every milestone so far has been effortless and it has truely been a miracle to watch.

Like others, I don't post about the days that I want to kick the girls, the dog and DH out the house because they are driving me crazy. I don't post about the virus that kept little A home for a week and me changing "lovely" diapers every 30 minutes, nor do I post my frustrations in PTing LA.

Do some post sting--yes. But I am sure that some of my posts about LA sting my FB friends with children who will NEVER do the things LA has accomplished, or my friends who have children who have passed away. Unless something is intentionally hurtful, I don't let it get to me. Like someone said, you are seeing the BEST of their family and don't we all like to show off a little!

Rink08 · December 2013

I agree. It's so easy to post only the positives. I've never posted DS1's dxs on there although I have posted funny things that he has said by being so incredibly literal or pictures of him playing chess when he was 5. The people who know our family, know him and they know his idiosyncrasies.

I don't mention when he runs behind moving cars in a parking lot, has meltdowns because he wants to wear the same suit outfit (complete with tie) everyday including to gym class, that he puts his tie under his baseball uniform because I won't let him wear it, or when he would sit for an hour ripping paper into tiny pieces.

DS3, on the other hand, is faliure to thrive due to malabsorption and allergies and I have posted about that usually in response to "He's so skinny! You need to feed that kid!" type comments.

zoeyandsummersmom · December 2013

Thanks everyone! All great points.

CaptainSerious · December 2013

I am another person who keeps the kids' diagnoses very private. People who know us understand that they have some delays, but know one knows the extent of it except family and very close friends. I don't see the point in broadcasting their private health information, especially in light of all the ways it can be misinterpreted and used against them. I DO post about all the ways they make me proud and how much I adore them.

Lovenyc · December 2013

I know what you mean. The FB posts hurt but for me, the harder part is seeing the other kids in his daycare class. They can carry on conversations with me. Reality is always tougher to swallow!

JoJoGee · December 2013

I find this conversation interesting. FB statuses can affect me too. I usually won't watch videos of children's first steps unless I have mentally prepared myself. But, I don't just post highlights.

I know most people only post the positive, but I've always posted about Lily's struggles and triumphs. I think, by posting about the struggles, people get a real sense of how big those triumphs are. Then, there is the fact that Lily came so early, there was never the illusion that she was typical. Not to mention, her physical appearance automatically marks her as 'different' (I.e. her trach, and now that's gone, her stoma scar and her wheelchair). I just never saw a reason to hide anything. Besides, I'd like to think that by sharing both our triumphs and our struggles, I'm educating and demystifying what it means to be medically fragile and have significant physical delays. Of course, I could just be one who over shares.

CaptainSerious · December 2013

@JoJoGee I used to feel the same way you did, but my situation is a bit different. My sons came to me as children with complicated pasts (they are both adopted), and we have always treated their histories as their stories, which they could chose to share or keep private. We talk about them freely in our home, but we also teach our children about the difference between secrets (which are generally about shameful information), and private and public information, as well as about how some people can/will use information about people to hurt others, so sometimes it's safer to guard sensitive information.

With their medical information, this was a slower process. Everyone knows about M's heart condition and J's NF, but almost no one knows all the things that we are dealing with in terms of their learning disabilities, processing and memory issues, or any other "hidden disabilities" they face. This is in part because somewhere along the way, we realized that we don't share our own medical information, and it made us question why we are so free with our childrens'. In another part, there's a huge stigma surrounding one of M's diagnoses. I originally felt compelled to fight the stigma, but at what cost? When it became clear it would affect how M was treated in school, I no longer felt the need to be the standard barer. Sharing his diagnosis would also involve sharing information about his family's past, which we have agreed to keep private for him. And so, we've slowly moved more towards keeping the details private.

Both our children have learning disabilities and delays and receive special education services and therapies. We do not hide that and are not in any way secretive about it. We just don't believe that most of our friends or acquaintances need to know the reasons why they have these difficulties. Does that make sense?

JoJoGee · December 2013

@CaptainSerious, makes complete sense to me. I think we all are living under different circumstances. And are operating from different backgrounds. And, one day I probably won't share so much about Lily. I also believe @-auntie- is right that there is a big difference around invisible disabilities and visible disabilities. I grew up with an invisible disability, albeit a minor one (LD), but I find it difficult to share it today.

malcivar · December 2013

For a while I took to hiding certain people from my newsfeed for that very same reason but then, and I don't know exactly how this came to pass, but someone else who was friends with a lot of people making these posts wrote something about how she didn't like how young mothers these days talked about their kids almost as if it was a competition and chided them for trying to one-up each other and encouraged them, in turn, to stop turning their kids' milestones into a race and just enjoy their children.

They do sting sometimes (most times) but I can't begrudge them their happiness. When Chris does something awesome, I feel equally proud but because I don't want Chris's dx to define him, I keep it off FB and share with family (we have a private family-only website through shutterfly) or here on the board.

Try to take a deep breath and remember that they're not doing it to make you feel bad. They love and are as proud of their children's achievements as you are of yours. {{hugs}}

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