I get it. Some people hate FaceBook and hate all social media. How annoying that people can see so much into your life – how annoying that nosey people you hardly know can find information about you! I have heard people comment about FaceBook being so horrible that you would think that FaceBook did something to them… personally. This last Friday a friend commented “FaceBook will be the downfall of society.” The passion!
I offer a different perspective, and one from a special needs parent.
In the last couple of days alone I have seen:
A parent with a new baby boy in the NICU – the new baby recently diagnosed with something she had never heard of and she was scared. Not only was she faced with having to educate herself on a diagnosis that there just isn’t a lot of information about (and most negative!) but she dreaded the day they discharged him because then she would be responsible for all of his care. Where does she start, it was a cry for help.
A parent desperately looking for medical supplies that she needed to feed her child. The proper insurance approval hadn’t been received yet and she was seeking out any extras parents may have amassed. The request did not stand long before she received offers. This reminded me of the time when someone asked for spare 60 CC syringes and before I could respond that I had an extra BOX, 20 other people had chimed in that they were willing to help.
A parent struggling with taking her child to church because her sweet special needs teenager was having a hard time fitting in. The continuing struggle to get her to church and church activities was shaking her testimony. She was given options on how to handle the situation and a reminder that no one is perfect and we are all works in progress. She was comforted and allowed to vent in a place where people understand.
A mother facing a hospital admittance over-night that was not only given strength and support from people she had never met but also a few people offering to bring her anything she might need. Having never met in person, this support, and being able to meet someone who knows what you are going through, is invaluable. Sharing parenting stories with a mother she would have never met if social media didn’t play a role.
I have seen a parent post a video asking if other parents recognized the motion their child was making looked like a seizure. And then, I saw her receive the sad news that yes, the behavior does look familiar to several parents. I saw the updates as it was confirmed by medical professionals. I shared her disappointment with the news because I have been there and I remember how much your child receiving a new diagnosis hurts.
And I saw much, much more.
So, I offer to you, FaceBook is a way for special needs parents to unite, pool information and knowledge (which collectively, on rare diseases, I would argue is far more vast than any single doctor’s).
It’s a place that when we are feeling lonely (which is often in this community) there is someone who is always there, quite literally 24 hours a day, to remind us that “you are not alone”. And those words have never felt so true.
I fall in love with children I have never met.
I cry when our special needs community loses a child.
There you have it, social media is more than memes, pictures of food, and over-sharing. Although, I have been know to share the occasional selfie – even the ugliest face I could muster for a picture. Because, well, humor needs to be a big part of special needs parenting as well.
Do any of you, my new social media friends, have anything to add about what social media means to you and special needs parenting?
Image courtesy of Pixomar / FreeDigitalPhotos.net