Saturday, March 30, 2013
social events #autism
i am tired of accepting invitations because I worry about someone's feelings even though i know it will be a difficult situation for my family. So why do i keep doing it? the truth is, it's hard to face a good friend or family member and admit that what you have just been invited to will be too hard for your autistic child and if you DO say it you are immediately met with this response: " oh he'll be fine!" or " we don't mind!" - Translation: we don't care if your child struggles or freaks out. This is NOT helpful and makes it even harder for you to say no. occasionally they will ask you what your concern is, but when you try to explain - they shoot down every reason you give. the truth is, if you don't have an autistic child anything i say will sound like a ridiculous excuse. "too much open space" "too small of a space" " too loud" " too many animals" " too many children" "boring" "smells bad" " dog hair" "he hates the food" what parent is really going to say that? no. you either make up the best most realistic excuse possible, or , you smile and start preparing. you pack 2 more bags than the average parent. you feed the kids PRIOR to the party so they don't get upset about eating things they won't like. you bring games and extra clothes and any other distraction you can think of. you spend the entire party glued to him with watchful eyes waiting for the signals that he's had enough. you don't eat, you don't have any meaningful conversations. you don't sit down. you have anxiety the entire time. it is a nightmare. when those signals start happening your hosts will suddenly decide to "help" he's raising his voice, trying to run out of the room/area, he's demanding to leave, he screams he hates the food, or the smell of something. And they try to TALK to him, they decide now would be a good time to offer conversation, and tell you "mom- relax, we're all fine, have a seat" etc. By the time you get out the situation is too far gone. the ride home consists of trying to diffuse your child who has just been through what he probably feels is a terrible miserable evening. he's had too much of everything and he's hungry. when you get home you need to do everything at warp-speed in order to get back into the groove so he can calm down. you run the shower, you get snacks, you turn on a favorite show. bedtime is pushed back in order to get back into a routine. you have a migraine. you're starving, your back hurts, you have been holding back crying all day. everyone finally goes to bed and all you feel is angry. why do we have to keep doing all these things to make everyone else happy? to make everyone else feel comfortable? just once i'd like someone to ask me what scenario would be best for me and my family to be able to participate? as a mom to an autistic child i can't even count how many social gatherings we've endured that i wish i could forget. the frustration. the sadness. the embarrassment. if you're going to invite us, at the very least give us a way out. let us say no. don't argue with us, don't pretend you understand. don't tell me it will be "fun" or " relaxing" don't tell me "he'll be fine" you don't know my son. spend your entire party doing everything you hate . put on clothes that are too tight and turn the music up too loud and cook food that smells too strong and balance a stack of books on your head while someone kicks you in the shins. did you have fun? don't tell me you understand. just once i'd like someone to be honest and say " i have no idea what you need, but if you tell me i'd be happy to try" or at the very least just let me say no.