As any parent, there are just some things that people say to you that make you think...."WTF?!?" This is especially true if you are the parent of a child with autism.
I cannot begin to tell you how many times I have had to bite my tongue because people in public have said things that just make me want to scream, rip their eye-balls out, and throw a poopy diaper in their back seats...yes, I know sounds vicious but seriously, if you don't know what to say, don't say anything at all...I know sometimes people are just trying to be nice and encouraging but it does not always work that way.
Since I'm not the only autism mommy on this earth I decided to see if I was the only crazy one who felt like this. I posted on a social networking site for parents of children with autism MyAutismTeam the following question:
"Working on a post for my blog and need your help. I want to know, what are the things as autism parents that you hate to hear the most from people? I want to write a post "What not to say to an autism parent..." but I want to hear from other parents...thank you!!"
These are some of the responses I received...
DMS: "I don't want people to apologize to me or say they feel bad. Having a kid with Autism isn't horrible."
Firas: "I hate it when people tell me Oh its okay all kids that age do that or act that way.....Biggest pet peeve"
Bruniesmom: "I can't stand when I am trying to teach [my daughter] proper responses and/or actions in public and I get told 'oh, don't worry about it, kids will be kids!' Not ours, they have to learn the social cues and responses!"
MomofSammy: "I can't stand when my son is having a meltdown, and some stranger says "you know how you should handle this...." grrrr like they would know!"
JenniferF: "But she doesn't look like she has Aspergers/Autism. That has to be the most idiotic statement!"
KarenAgrestiBellafiore: "What I hate most is the stares. Not from children but adults!"
PamelaMari: "If you don't do something he's gonna end up in an institution"
Julmer: "He'll grow out of it...just get tougher on him, if you put the food in front him he'll eat if he's hungry enough."
Katziah: "Its good to hear he's improving, but is he talking yet?"
MomtoKiddo: "Everything happens for a reason..."
Letourngo: "I got a lot of 'he'll grow out of it', 'he's just a late bloomer' and the old...'he acts that way cuz you spoiled him'..."
The following two statements summarize a lot of the responses as well:
- "God does not give you more than you can handle"
- "I don't know how you do it!"
This is not to say that we do not want to hear from others or talk to other people. No by any means at all. We just want people to think about what they say before they say it because we live our lives charged with emotion and anxiety. Our days are full of stress and worry about what will happen tomorrow or what will trigger the next melt down. What we want is people to just listen to us and offer to help. And by help we mean, learn about autism, what it really is - not just Rainman or Mercury Rising references; teach tolerance to your children that its okay to be different and that people should not be judged because of the fact that they are different.
We are parents just like you are. We love our children with all our hearts. We are not martyrs or miracle workers. We take care of our children because they are our children. They are not wards or burdens on our lives. They are our flesh and blood. We cry for them when they are sick just like you cry for yours. We stay up late with children who have fevers and scare monsters out from under the beds.
We also have to deal with taking the tags off our children's clothes because they bother or making sure they have 7 pairs of the same shorts because they will not wear anything else. We also have to make sure that their cups are filled "just right" and that there are no chocolate floaty things in their chocolate milk. The music cannot be at certain levels and their trains all need to be facing the same way. They have to go the same route to school every day and to grandma's house every weekend. They have a particular hair band and should they lose it we have to rely on the kindness of museum personnel to find that one hair tie because even though they have 20 more at home that look just like it...they need THAT one... (This particular story is a true story that a mom with a little girl faced when visiting the Titanic exhibit and wrote about it on her blog One Girl Circus)
So please, next time you are around an autism parent, just smile a smile of understanding because that's all we really need. And maybe a glass of wine when the kids go to sleep for the night (if we can get them to sleep...LOL)