1. I'm sorry. Sorry about what? Sorry that you don't know what else to say? Sorry that we are in a conversation that you find uncomfortable? I know you're not sorry it's me and not you. Don't be sorry. There isn't anything for you to be sorry about. It is what it is. We have Autism. That's that. Don't treat us weird or ignore us or unfriend us. Support us, then you will have nothing to be sorry about.
2. Are you sure? I'm not sure how people have decided that they are an authority on Autism. I'm not sure what they see or don't see that makes them think otherwise. Someone who knows about Autism would never say that. So then, saying it just makes one look ignorant.
3. I don't know how you do it. They are my kids. I would do anything for my kids, just like any parent. Doing it is the only option. You're right though, you don't know how I do it. You have no idea what it's like to live with Autism. I live Autism every minute of every day. Parents adapt to what their children bring into their lives. It's a simple concept, I love them and will do anything for them, that's how I do it.
4. We are only given as much as we can handle. I question that a lot. A lot. How much can I handle and why is it constantly being tested? I have taken on what has been given to me because my heart is full of love for my kids. However, I am often pushed to many limits - emotional, mental and physical. My patience level is tested regularly. I know for a fact that I am a much stronger person since I have been on this journey but I don't need other people to tell me some cliché to eat up space in a conversation where they don't know what to say.
5. What's their special skill? I hate this question. It's offensive to me. My kiddos all have many unique skills. My 4 year old isn't going to college in the fall. My 2 year old isn't reading. My 5 year old isn't composing a Sonata. My 6 year old hasn't cured Cancer. They are just amazing kids that are incredibly brave. Isn't that enough? To me, it's everything.
We get the " How do you do it" and " Special needs? They don't look special" people are ignorant. The old saying applies, "If you don't have anything nice to say, don' say anything at all" or in our case " Please don't open your mouth and spew out stupid ignorant things you know nothing about that will offend me and my kids, best you just nod and go about your business."
ReplyDeleteI've heard these too. Another one of my personal favorites is "Everyone is a little Autistic at times." Has anyone else heard that one? It's frustrating.
ReplyDeleteYeah, I hear that one a lot. I always want to push them to tell me how they've come to that conclusion.
Deleteoh i hate that one too.x what do people know bout being autistic if they aint!! im not my son is so what do i know?? the only thing i know is that my son goes through hell on a daily basis and theres not a lot i can do to stop that all i can do is help to make his world more comfortable but thats it. i give him all my love and time and patience and i wish i could just end the torture in his head but i cant.
DeleteI've heard that but it usually is we ALL have autistic tendacies. Um well, ok.
DeleteMaybe it would be worth a shift in perspective - as in people are just trying to be empathetic. Usually trying to offer kind words but not sure what to say, or how much defensiveness you have bubbling beneath the surface.
ReplyDeleteDon't get me wrong, I'm currently wiped out on summer vaca with my 7.5 yr old and counting the minutes 'til ESY starts tomorrow - I need to breathe and try to get more energy and I need others to be there for him. So I get the defensive feeling - but really at this point I'd be grateful to hear someone say 'I don't know how you do it' because I know they're just trying to acknowledge things can be challenging or overwhelming some days.
I don't have a special needs child, and you are right - sometimes I may say ignorant things to those who do. But it's not because I aim to offend, believe me. Sometimes in a quick situation I just don't have enough brain to say something appropriate and sometimes I don't know what to say at all, because, again, you are right - I have no idea how it is to have a child with special needs, but I do feel empathetic. I just don't always know how to express it. People have many challenges in life, may it be with kids, illnesses or other issues, but I don't think I need to know every single detail about special needs children, allergies, diseases, etc. I mean, I live with diabetes, and I don't expect people to always say the right thing or act appropriately, because they have no idea what I'm dealing with. I know sometimes we need to vent, but there's no need to make people feel bad for being empathetic.
ReplyDeleteWell said mama! Well said.
ReplyDeleteI agree with all of them but also with all the comments. Sometimes people don't know what to say. Are they supposed to just stand there and stare at you? Sometimes when someone says "I'm sorry" to me, I honestly reply "Me, too!" but I usually follow it up with "But sometimes they are easier than typical kids so there are pros and cons."
ReplyDeleteHugs and hang in there.
The one I abhor is the "I don't know how you do it". Like I have any other choice? Who ELSE is going to do it?
ReplyDeleteIt doesn't feel like empathy; it feels like patronizing. Those people who can obviously see that I need help, don't exactly offer to do so. I don't need their sympathy or their empathy; I need HELP.
What's their special skill? Hmm well mine knows all his hotwheels all 5K of them. Oh and he knows when I put conditioner in my hair based on how it feels when he twirls it. Oh and he's pretty good at being a 4 yo. What's your kids special skill? I think whoever asked me this question would get a verbal beat down.
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