Today I was reading through a bunch of posts on a private special needs group that I belong to, when I was totally flabbergasted to see a heartbroken post (or should I say rant – by her own words) by a mother who’s child has been in the hospital for quite some time. She was (and very understandably) upset that her Mother had posted on Facebook that her child was being released from the hospital. Yes, as much we all love the convenience of social media and having it in the palm of our hand, sometimes in can suck.
So What’s The Big Deal?
First of all, she had chosen not to put her son’s illness over social media for her own reasons. She wanted to hang on to some privacy and didn’t want the ‘whole world and his friends’ calling, texting or even coming for a visit. Also as the sole caregiver to her child she really needed some peace and quiet, so besides sharing her son’s situation with a few close friends and family, nobody knew about it.
Whilst going over the replies to this post I came to realize that this woman was not alone and that this is a global problem that many special needs parents have to deal with (as if they don’t have enough stress as it is!)
To be truthful the same situation could be applied no matter what the circumstances entail, meaning not necessarily a hospital visit, but other private matters. NOBODY has the right to post about ANYBODY’S business on any social platform without that person’s prior consent! Sometimes when it’s close family it seems that this choice is unrightfully jeopardised and that the family feels that it’s also their right to post things about their Grandchild/Niece/Nephew/Cousin etc.
No Bad Intentions
I am quite sure that these well-meaning individuals are not doing it maliciously at all, they are usually worried and need a place to vent, so now with Facebook and the like (excuse the pun), they feel they will get the support and attention that they also need. They may also feel that they are helping.
This problem affects many families at large, but seems to be even the more so when we are talking about families of special needs children, probably due to the fact that these kids are so medically fragile that the extended family and other friends feel that they really must get involved and let people know what’s going on. In their eyes, they are just giving legitimate support. And may even be stunned when you approach them on the matter.
How Do We Get The Message Across Without Hurting Anyone?
So how do we go about letting our family or friends know that our business is EXACTLY that – OUR BUSINESS, and that we don’t want it sprawled all over the social media without our permission. How are we supposed to get the message over without hurting the feelings of these well-meaning folks? We also don’t want to fight with anybody and certainly don’t want to feel guilty and have negative feelings when everything is just so stressful as it is!
One of the ladies in the group suggested a very nice way of how to let people know that you don’t want them sharing your business on social media and it goes something like this:
“I’ve recently decided that I’d like to be a lot more private about my son’s/daughter’s health and I really would appreciate you not ‘checking in’ on Facebook at the hospital when you come or sharing any information on social media until you see that I have already posted something announcing what’s going on first. Because of our child’s medical fragile situation, we are taking one day at a time and trying to avoid extra stress. By you waiting to post updates until I’m mentally ready to take that step you will be helping me with some of that extra stress I’m carrying. If there’s any other little ways you can help me I’ll let you know too.”
This seems the perfect way to get the message across without hurting anybody’s feelings. And if they still get hurt after that then I’m afraid there’s not much you can do and you MUST put your feelings and your privacy before anything else and stick to your guns (Even if it’s your mother 😉 ) But I think in most cases this very diplomatical way of getting the message across will work like magic. And who knows? Maybe you’ll even get some extra help in other more positively channelled ways.
Having written this post, I think I also need to write another post targeting family and friends of special needs families that will give some outlines of what to do and what not to do when somebody close to them is struggling with health issues or other stressful situations. For example, when a child is very first diagnosed as being special needs – for some reason this is also a ticket for some people to start posting about it on social media even before the family itself has even digested the news! It seems like somehow people’s senses have been numbed to the point of ultimate insensitivity. This is probably due to the impact of constant digital media that is fed to us all day and every day and has left us feeling comfortably numb.
So if you have any issues that you have experienced personally that I could write about (obviously anonymously) and could help others to be more sensitive when dealing with special needs families, please post in the comments below and I’ll gladly include them in the next blog about this subject.
Enough Is Enough!
I think this concept even goes beyond social media and also includes anybody gossiping about what’s going on with our kids behind our backs. I feel that the need to try and create some sensitivity awareness here is very important. So make sure to share the blog and let’s get the word out there! Enough is enough! Our business and our kids business is OURS ALONE! And not to be shared without prior consent!
With much love,
Hannah (Mom to Natan Shai)