Tuesday, June 10, 2008

Not what you think

**warning: probably very scattered thoughts, not perfect sentences, may not be perfectly flowing reading :) **

raising an autistic child isn't what most people think. it's not like the movies. i absolutely HATE seeing an autistic child portrayed on tv. They are usually showed to be horribly agressive and abusive and self mutilating, many times showed involved in murders and such, or they are showed to be stupid. the families are usually showed sticking them into institutions to try and protect the child, or to simply not have to deal with it. It's horrible how autism is portrayed in movies and tv shows.
when people find out that benjamin is autistic i see the look in their eyes. most tell me they saw it on tv, or in a movie. or that they know someone who knows someone who is related to someone who knows someone who is autistic.
then you have those people who think that the child is bad or naughty or that they way we are parenting is what is causing the problem. if we disciplined more, or if we didn't give in, if we didn't give him special treatment, if we just forced him to communicate, etc...
Others treat it as a disease. They don't want to come anywhere near him, or even us. Heaven forbid it could be contagious. I think that autism is a bigger taboo to some than the AIDS epidemic.
Then there are others who see Ben for 5 minutes and make their judgement from that. He said a few words, he smiled, he played with a car, he didn't scream and slam his head into a wall, so clearly he is fine. He isn't really autistic. They think that we clearly have it so easy because Ben acted fairly normal, maybe even a bit quiet, during the 5 minutes they saw him, so clearly that must be how he is during the other 23 hrs and 55 minutes of each day.

Life isn't like any of those things above. Ben isn't contagious. He doesn't have a disease. He isn't stupid. He isn't weird. We don't underdiscipline. We don't over indulge him. he throws horrible tantrums, sometimes for hours. He refuses to eat sometimes for weeks. When he does eat it's a fight and it's strange things. He will eat only applesauce out of the dumb little plastic containers for weeks, every single meal. Halfway thru the meal he could throw it across the room and scream until you figure out that he has changed and now the new obsession is waffles. He gets constipated so bad that we now keep a container of spray lube in his room to help when we have to literally remove a piece of stool twice the size of his fist from his bottom as he screams. he can say amazing sentences, putting words together properly and clearly pronouncing each word, then I can ask him if he wants milk or applejuice and he loses all communication and can't answer the question. He can see a motorcycle and he will say "it's a motorcycle" over and over until we say it exactly the way he wants. sounds simple huh? but it's not because we don't know how he wants us to say it, we aren't in his head. this can go on for hours until he is so exhausted he can't go on or until we figure out exactly what he wants. he can scream for no apparent reason, us never figuring out why. he is OCD, and this can be a long exhausting process. he usually only wants me. if he drops something it has to be me that picks it up and gives it to him. if anyone else tries to it's another melt down. he will follow me around screaming my name over and over. no matter what i do he won't stop. he doesn't ask for help, he doesn't tell you if he needs something, he doesn't tell you what he needs, he doesn't initiate any sort of conversation at all.
these things can be exhausting...and embarressing. I SOOO hate to say that. i feel like such a horrible person to even think that let alone say it but it's the truth. people stare in public and i hate it. sometimes i just want to crawl under the table. sometimes i don't want anyone to know that i'm a part of this at all. sometimes i wish he would just stop. sometimes i scream because i just can't deal with it anymore. sometimes i just want him to stop. sometimes i don't feel empathy for him having to go through this, sometimes i just want the insanity of autism to stop.
i have no idea where we are going to end up on this roller coaster. i would like to think that it ends with ben functioning perfectly in a neurotypical world. but i'm beyond terrified that it doesn't. how long can i do this? can i live my whole life like this? what happens as ben gets older and bigger? i know that i am a mother which we know means indestructible, invincible, etc...i know that no matter what happens i will make it and so will ben, i just hope i can keep my family and my marriage intact as we continue to fight the uphill battle of sanity.


Kimble-Wood said...

Heather, I can't begin to imagine what you go through on a daily basis. But, you are such a strong woman. God has put a lot on your plate and you always rise to the occassion. I agree about the the stigma put on autism and I blame it on Rain Man. That was people's first glimpse at autism and that is what they remember. Outside of that, people haven't taken the time to educate themselves on autism so the either #1 make rash judgement or #2 withdrawl. Neither one of them is right and I'm sure it is frustrating. Keep your chin up and your faith strong.

Michelle said...


Like I told you yesterday, I don't know what it is like to have to deal with autism 24/7. But something I do know is that I am impressed by the strength that you have because you deal with it 24/7. (if that made sense I'm impressed). Just remember that God does not give you more than he thinks/knows you can handle.

If you need to talk, you know how to get ahold of me.

Hang in there.

MamaMia said...

God, Heather. I'm sorry about all of the things that you are going through. We are going through some pretty tough things with Max. It almost seems like it never ends. I hope you are surviving the weather.