The power of social media…I want to share some snippets of conversations I’ve waded through in just 20 minutes on Facebook. These are autism families.
One parent is experiencing such extreme anxiety and depression, while trying to be the best support and advocate for two kids with special needs, she can’t deal with any of the advocacy conversations. She doesn’t have space for the “negativity and hate.”
Another was confessing that she’s struggling to pay the water bill, between all the normal expenses, as well as PT, OT, meds, and such. She feels like a failure at 42 and the “last place” she will go is anywhere that advocates are talking because she “doesn’t need people judging her and telling her she’s doing everything wrong.”
Another is dealing with a child that is self-injurious at school, and after changing schools and so much more support, all she can do is break down sobbing. The thought of advocates presuming to know what they’re going through is more than she can “bear or tolerate without losing it.”
Yet another…with a newborn baby, a son on the spectrum, and a husband in Afghanistan. She can’t engage, won’t engage. All she can do is put one foot in front of the other and get through each day, because she is all they’ve got right now.
I’m putting this here because I want you to know, this is just another day, just another 20 minutes. This is how parents really, truly feel about some of the advocates they’ve encountered. They don’t feel supported, understood, validated, appreciated, or like they’re part of the community. They feel hated, beaten down, singled out, overwhelmed, marginalized, and sometimes, at the end of their rope.
These people are important – their thoughts, their struggles. While I do not support Autism Speaks, they don’t make parents feel like this. So I really want to impress this upon you…where do you think parents will go after they feel kicked in the gut, or like they’ve been compared to other parents that have killed their children? It may not be a competition, but if advocates are serious, really serious about making an impact, does it behoove them to leave this in their wake?
20 minutes. So much hurt in such a small space.
Today I will spend 20 minutes listening, understanding, reaching out, validating.
What can you do in 20 minutes?