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?
Living on the Spectrum: The Connor Chronicles 
Heyyyy… you didn’t talk to ME in those 20 minutes! I would have just complained about the IRS, anyway.
Sorry…. this is a serious post…..
Damn them and all their rules and what-not!
I wish there was more we could do for these families 😦
This is such an eloquent post in such a short space. Really makes you think… thank you, Flannery.
Flannery,
Great Read ! Unfortunately it’s too common and people feel backed against the wall. Others say BULLSHIT look at all the resources they have. I have a 15 yr old ASD that hit puberty and it all went to hell. He’s angry, destructive, hateful, cuss’s me, bangs , spins, slams. We are talking thousands of dollars of damage over the past 2 years. We have had the same Doctor and neurologist since he was 4. We are juggling meds, fighting the insurance company because only they know what he really needs. (sarcasm) I have been told to take him to a behavioral specialist , we are on A 2 YEAR OR MORE WAITING LIST, The school has a behavioral specialist but her schedule is full, the teachers are pretty much taking on that responsibility. I have contacted Medicare, SSI, Social Services, ASD Advocates in my state, children’s hospital, mental hospitals, and the insurance commissioner. I work full time and take care of him full time, that’s it. I make next to nothing because of the cost of a caregiver so I can work. I have been turned down for everything or given more numbers to call, more websites to visit, more excuses. It’s exhausting ! I have days when if someone post one more puppy in need I will scream because there are some days I can’t stand another sad story…….hey I’m living it ! It doesn’t necessarily mean they have been beaten down but they can’t even get to the beating !! I personally am so thankful for the groups on here and the people I have talked to, without them , without you, I am alone ! The key is resources, without them we are lost. I make a point to repost and resource info no matter what state or country, might help someone else in my situation !
Kimberly, I’m so sorry that resources are strained and hard to come by. Having a group that will validate your feelings and struggles is so important to not feeling alone. Hang in and stay strong!
I love you. I feel you. Your not alone.
This stuff does go through my mind. Talk politics? Angrily? Or get down to the business of helping my child. Hmmmm….decisions….decisions….
Screw politics, let’s talk bacon!
Heartfelt post, I can both relate and sympathise. Nicely done
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i feel so sorry for this woman with her husband overboard, dealing with a newborn and a kid on the spectrum. maybe there should be a place where parents to kids on the spectrum can meet in person. and maybe their kids can make friends with each other. isnt that an idea?
thank god for forums and blogs like this.