across the top of my rear window on my little prizm is that saying, “You think you know, but you have no idea.”

it is a loaded statement, with many meanings. i like how thought provoking it is. i hope that people will read it and think, for just a moment, that the snap judgment they made a minute ago about me, or their wife, or their neighbor, might not be true. i like to make people think.

right now, i am thinking about this statement as it applies to my life with a child who is autistic. according to my facebook page, i currently have 18 friends, on facebook, whose lives are directly touched by autism. i know this because i started a group on there called ‘spectrum support.’ it was a selfish act, creating the group. i wanted a place where i could vent about amelia to people who understood.

please, i don’t mean to say that my other friends are not good listeners or don’t have compassion. i know you all do. you are all so loving and supportive of me and of the girls. it’s just that those of us who live with it… day in and day out… we have experiences that the rest of the world cannot fathom.

for example, it is normal for kids to get angry at their parents and scream that they hate them. yes, that is normal. my daughter amelia, when she is angry or frustrated, will scream that she hates her life, that she wants to die. she says she wishes she had never been born or that it’s not fair how hard her life is. and she screams how i have lied to her so many times and she will recount each and every time i ever told her something that did not turn out to be true. she remembers every moment. then she will scream at her sisters how they are mean and cruel to her because the won’t do this or that.  then she will stomp around and wail and cry. she will screech that she is moving NOW. she will go to her room and pack up her things. she will tell me she is moving. or that she is never leaving her room. or that she needs to live with someone who loves her. all of it… she screams this. every. single. time.

do you understand what i am saying? every single time she gets angry or frustrated, it is a screaming melt-down. it is not easily resolved. i have become almost cold and indifferent to her rages, because if i took what she said personally, i would want to crawl into a hole. i have developed some very thick skin. at least, she thinks i have. when she is done raging, she often puts herself to bed. she is exhausted and crying and sad. she sobs until she sleeps. and i sit on the couch, semi-catatonic (a phrase i picked up from a fellow mom of a child on the spectrum). inside, i am again broken. i am trying to figure out what set her off this time. i am wondering how i should have handled it this time. i am sad that she had to fall apart again. and i am thinking that she is right~ i really am the worst mother in the world. *sigh*

don’t jump to tell me how wonderful i am. that is not what i am saying. i am just trying to illustrate what you have no idea about.  these rages are just a tiny part of what we go through. there are also the fits at the dinner table because i try to make her try new foods. again, every child in america will, at some point, complain about some evil food that has appeared on their plate… be it a vegetable, or meat, or whatever. for amelia, this is any food that is not in her very specific list of acceptable foods. so when i put a tablespoonful of corn on her plate, she yells and groans. never mind that she loves corn on the cob. she will say this is different and she won’t eat it! then the ultimatum will come from me… eat it or nothing else for the rest of the evening. then she will bargain… if i eat it can i have one of my donuts? (gfcf of course) grateful that she is willing at all, i usually agree. all that for one tablespoonful of corn. not even a really nutritious vegetable! ugh. are you exhausted yet?

then there is the electronics battle. if it was up to mia, she would be ‘plugged in’ to some sort of electronic 24/7. without a doubt, she would have the computer playing her “let’s play”s from youtube. she would have a ds in one hand and the wii remote in the other. she would ignore all of us completely and be 100% happy. unfortunately, evil mommy does not allow this. yes, i do allow a great deal of electronics time on the weekends… more for my own break than for any other reason. but when she does something way out of line…. like lie to a teacher or me about homework… she loses her electronics. that is my go-to punishment. it is swift, effective, and when that news is delivered to her… ugly.

imagine the worst tantrum you child ever had as a 2 or 3 year old. now imagine that exact same tantrum coming out of a child who is almost 5 feet tall and 135lbs. yes, it is ugly. again, once the news has been delivered and she has raged, screamed, screeched and insulted everyone one of us in the room, she will melt down and sob. she will beg for forgiveness. she will apologize and ask for another chance. and then she will put herself to bed, at least for a while. and i return to that catatonic state. sometimes i cry. sometimes i drink.

i worry how my little rage-a-holic is affecting her sisters. when mia flips out, sophia becomes the care-taker in the room. she always comes to me to comfort me. she always tells me it will be ok and that she loves me. louisa tends to withdrawl into herself, getting very quiet. i think she feels very helpless when mia rages. i can relate to that. there have been moments of all three of us on the couch, just holding each other. we are all catatonic. we are all crying. we are all just glad that the storm is over again, for now.

the rest of the parents in the world get to look forward to the days when their children will be 21 and on their own. they get to think about ‘some day’ and college or weddings or grandchildren. i don’t know if any of that will be in mia’s future. she has gone 11 1/2 years without emotionally aging past the age of 4. so maybe by the time she is 23, she might be the age of 8? something tells me no, but i keep hoping and praying that someday… someday… those rages will end. i hope. someday.

anyway, that was just a tiny taste. please, just keep my story in mind the next time you see a mom at the mall or the park with a child who is unruly or defiant. you think you know what is going on…. but really? you have no idea. suspend judgement. hold back the ‘that child needs to be spanked’ comment. open your heart to that mom who is just barely holding on and say a little prayer for her. and for me. and for the thousands of other parents who really are just holding on. we need them. thanks.