(Update: April 2, 2015 apparently, when I changed this post from Private back to Public, it reposted as new. Although I do not support Autism Speaks any longer, I would never begrudge anyone that does. I do stand behind the rest of this post – it was a rant at the time, but I do stand behind it)
I received a little bit of abuse since posting my last blog, not about the “streak”** but because my streak supports Autism Speaks. I’m sure I’ll get some abuse from this post as well. I don’t like conflict. I certainly try not to cause conflict. I’ve been thinking about writing/not writing/writing this post for days, but it wasn’t going to stop bothering me until I did. I could receive all of the positive comments in the world, but unfortunately the comments that stay with me are few negatives.
I used the word “abuse” to describe this feedback because that is exactly what it was…. abuse. They weren’t opinions, or simple comments like “Hey, I disagree with you and here’s why”, they were out-and-out attacks. I value everyone’s’ opinion; it doesn’t mean I will agree, but I will listen. There is always that opportunity to learn something new or look at something in a different way. Most surprising, to me anyway, was that these comments came from people with autism.
The only usable sentence not dripping with expletives was “How can you support a charity that is trying to eradicate me? I am so sick of this.” This post is really not about a few negative comments, my skin is thicker than that, it’s more about the fact that I’ve seen this kind of reaction before. It makes parents feel bad for wanting to help their children.
I can make the assumption that these folks were able to read my post, understand it and comment on it. This alone puts them on an entirely different level of the *spectrum than my son. My son cannot do that. He will never be able to do that.
On one hand, I found it refreshing (if only for a minute) to come across people, any people, who actually like who they are. Isn’t that what all of the self-help books/TV shows/magazines, etc… tell us we all need to do, love ourselves? I don’t believe anyone should have to change what or who they are if they are happy with themselves. On the other hand, I could have lived without the hostility. If I thought Autism Speaks was rounding up everyone with Autism and forcing them to into treatments, obviously I would not be supporting them.
We all need to look at both sides of the story. I support the right to be who you are, but there are many children and adults with autism that need help, will never be able to take care of themselves, live on their own, much less comment on a blog. I’ve said it before; if I could live forever, I would not want to change a thing about my son. He’s the happiest “kid” around and a joy, but he has no siblings, no one really to care for him when I’m gone. This is what my nightmares are made of. This is what keeps me awake at night.
I’m not going to feel guilty for hoping for some sort of break- through so that I know his life without me will be just as happy and safe as it is with me. I do not want to eradicate anyone; I want what’s best for MY son.
I will continue to support any Autism charity I chose to support. I will continue to fight for my son.
If you’d like to have a rational conversation, I am perfectly willing to listen.
*Streak – #AutismStreaks – 100 day walking streak using the CharityMiles app.
Taking it a Step at a Time 
TRY TO IGNORE THE ABUSERS. THEY DON’T UNDERSTAND WHAT YOU ARE GOING THROUGH. SPEND YOUR TIME AND ENERGY HELPING YOUR SON AND SHOWING HIM HOW MUCH HE IS LOVED.
LikeLike
I can ignore the abusers, but I really am staring to believe that there is such a push for awareness and acceptance (as there should be) that parents being made to feel guilty for also wanting to help their children. Thank you for your comment! He IS very much loved 🙂
LikeLike
Beautifully said! We all want what’s best for our children, with or without autism. We want our children to get the best education, have friends, make decisions, and stay safe. Wen our kids can’t make their own decisions we have to make the best ones for them. If an adult with autism has the ability to make their own decisions, that is wonderful. being confident in who you are is the ultimate victory. this being said, I can’t imagine a child who is non-verbal, can not process their environment, can not make social connections, and can not sleep or eat properly would care who is doing the fundraising or research to help them get to the point where they could be independent. Don’t we all want help when we can get it in life? There are many sides to the opinions for/against autism speaks, just like there are many sides to autism. There is no one right answer for everyone.
LikeLike
So true! Thank you.
LikeLike
Love you Vic. You are a wonderful Mom, a beautiful friend with a tremendous heart. Stay strong! Your son is great kid and you two have a wonderful relationship. Everything you are doing is out of love. I don’t know of anyone who can’t use a little extra help. It’s sad when people assume everything is about them. Don’t they realize while we all have gifts that make us unique, not everyone has the gifts that make them independent?
LikeLike
Thanks, Sue! I know you’ve heard this all before (maybe not this specific incident). Thanks for listening! Luv u too!
LikeLike
Exactly!! Well said. We speak the same language!
LikeLike
We do. That, above everything else is my hot button! Thanks for your comment.
LikeLike
Ignore the flamers. You’re working for a good cause.
LikeLike
Thank you. You are the second person to comment on this very old post today. I don’t know how you are finding it. Anyway, although I no longer support Autism Speaks (for my own reasons, not the popular latest reasons) I would never begrudge anyone that does, ever. I do still stand by the rest of my post. Thank you for reading.
LikeLiked by 1 person
You know that dinner at an Italian restaurant that we’re going to have when I will explain degrees of consanguinity on a red-and-white checkered table cloth, while we sip chianti? We’re going to talk about this, too. 😉
LikeLike
I was just trying to write a post for Autism Awareness Month (which is why I saw this come up so quickly) but I am having a hard time. I am finding myself more resentful about it every year. I don’t think this headache will go away until I do. Looking forward to both of those talks.
LikeLike
Maybe a post on what you are resentful about …? The division in the Autism community? The lack of consensus? Lack of supports? Just throwing out some ideas…
I am looking forward to those, talks, too 🙂
LikeLike
I am really resentful about all of the above, but I really do feel that parents, especially those with older children, are not allowed to say how they feel. I worry every single minute of every day about what will happen to DC when I’m gone, when his Dad is gone…. It breaks my heart to think he will be at the mercy of strangers, but still I am supposed to Celebrate? I’m tired of being lectured to about how I should feel about everything. Yes, there should be acceptance and awareness, but my child will never be able to care for himself, ever. I am resentful that I am not allowed to say that with out people crawling out of the woodwork to tell me I’m wrong, I should celebrate him! I do, anyone that reads my blog know that I celebrate him every day. And “If I were to live forever I would not want to change a thing about him” – I don’t want to change a thing about him, but there is so much he doesn’t understand. There are so many ways people can take advantage of him, abuse him, hurt him…. I have plenty of things set up and in place for him for when I am gone, but the fact remains, that he will eventually have to be cared for by strangers and that scares me to death. But we’re not allowed to say these things, we are just supposed to accept the way it is and the kids/adults that are higher functioning (oops, not supposed to say that anymore) will be just fine, but why won’t they understand that everyone is not the same – we are worlds apart? A friend of mine’s son, screams as if in pain 50% of his day, every day. Why is she not allowed to say she’s hoping for a cure? How can someone with Autism say to her ” you are wrong, we’re okay” – Who is “We’re?” . Certainly not her son. I have another friend https://takestep.wordpress.com/2013/11/14/dear-abby-feeling-chastised-in-new-england/ – who is in the same boat. I absolutely understand that no one should ever feel “less than” – I get why we are now celebrating “Autism Acceptance”, but it is not the same for everyone, it just isn’t. I am fortunate that DC has progressed as much as he has, it took a lot of work, a lot of work, but as much progress as he makes or will continue to make, he will never be able to take care of himself and this is what my nightmares are made of. (aren’t you glad you asked?) – so now that I’ve been able to vent at you, maybe my headache will go away and I won’t have to write a post after all. So sorry for the rambling vent, but thanks for “listening”. (I also do not support Autism Speaks anymore, that was an old post that I didn’t know would re-publish when I changed it from private to public, but I do stand by the rest of what I said.) Sorry for the vent, you’ll know better than to ask next time 🙂
LikeLiked by 1 person
You can vent any time you like, my friend. I will always ask because I always want to hear what you have to say.
Everything you say is incredibly valid and important, and those who can’t respect the reality of your situation and instead keep thoughtlessly rattling their sabers and chanting their slogans are naive and, in the end, ineffectual.
I am just sorry that their mongering has hurt you.
LikeLike
But that is exactly the environment we find ourselves in, it’s a shame. There is something to learn from those of us that have older children and have been through the trenches and we are many times, disregarded because this is not the way we do things now or this is not the way we think now. I really do try to stay out of it for the most part. But I feel horrible for the people I see getting the brunt of the animosity only because they are worried about their child. It isn’t right. And as I said, I normally do stay out of it, even though I have a lot to say about it, but this month just brings it all to the surface for me. Thanks again and again, you ended up with another vent 🙂
LikeLiked by 1 person
Big hugs – if there is anything I can do to help – besides listening to venting, which I am very happy to do 😀 – please just ask.
LikeLiked by 1 person
Thank you!
LikeLike
Well said – I simply don’t understand why people need to be so aggressive in their opinions – if you happen to disagree then just don’t read the article.
LikeLiked by 1 person
My thoughts exactly. This was an old post that got reposted by accident, but I am glad that it did.
LikeLike
I am sorry to read that this happened, regardless of when. Your response was right on. I, for one, know how hard you work at balancing your lives (as in always thinking for two).
Everyone has the right to agree or disagree but, that doesn’t give them the right to be abusive.
Keep up the good works!!
LikeLiked by 1 person
Thank you so much Mere! That is my point exactly. We all have different views and we all should be able to voice our opinions without being abused for it. I don’t agree with quite a lot of what I read. If I fell strongly enough about it, I will give my opinion – just my opinion without hostility. More times than not, I just keep my mouth shut (or write a post:) – Thank yo again for reading and for your support (as always) – Miss you.
LikeLike