"Autism moms ruin everything"
That was the phrase that lead someone to my blog a few weeks ago. Did you know we bloggers can find stuff like that out? I suppose it's so we can see what kind of viral reach we have going on. Sometimes the phrases are kind of amusing. I still chuckle at the one asking "what kind of cocktail for after an IEP". (Never did find that answer out. Leave your suggestions in the comments if you have a good recipe) This one however, stuck in my craw. (By the way, what is a craw and where the heck is it that things get stuck in it. Again, leave your answer in the comments.) The annoying part is I'm not sure what it is I or any other autism mom is ruining for everyone else. It's going to be a case of suck it up Buttercup for that random person. I got enough going on. To bad so sad you don't like me but I got plenty who do so, (Say it with me now with Jersey attitude) "You do you!"
I've been doing this a year, let's just say the skin is a little thicker to random stuff like that and I can laugh it off pretty well knowing it will eventually make excellent blog fodder. Thanks random angry stranger! This past week however stuff got slightly more personal for me with what I write and how people respond to it. I am Facebook friends with a special education teacher. She sent me a very nice message the other day telling me how she's been enjoying the blog and the companion Facebook page for it. I was pleased to hear it. It's nice to see folks in the field reading it. She did bring up a few points that I have been mulling around in my noggin ever since. Why are we (us autism parents) kind of well so freaking angry all the time? We seem to be constantly up and ready for a fight. Always on the defense. What has brought us there? She asked me to explain my perspective to her as she wanted to understand more my position as a parent. Where was all this coming from? She also knows I come from a place of not just a parent but as someone that used to work in a special needs school for kids with autism. I've done both sides of the parent teacher meeting table. She needed some insight. She wants parents to know she's on their side.
So what gives? Why are we all so pissed off and ruining everything like that random stranger implied? Why is my teacher friend so baffled by our cynical outlook. Well I don't know about you all but I got a list. Of course I got a list. I'm Autism Mom. We love our effing lists.
1) I am TIRED! For years my son has not slept through the night. Some evenings are better than others but to many are just when he's going on his second, third and fourth wind. Of course I think of my friend. She works a full time job and then goes home to her home and family to care for. I bet she's tired too. Or the kiddo's former teacher. She taught my kiddo all day only to go home to her own autistic kiddo. That's a whole lot of autism. We all come to the IEP table pretty worn out.
2) Paperwork and testing blows. My kiddo is 9 and I'm still filling out forms. Mounds of paperwork and god damn I am sick of writing out his APGAR score still. Like that makes a tiny bit of difference now? Sometimes it just seems like an incredible amount of busy work to have all this. I especially feel slapped in the face when it's clear that it wasn't read despite me taking the time to answer all the questions. (I'm looking at you Doctors/Insurance Companies) Again, I can't help but remember writing out reports to parents on how their kids were doing with their vocational training and hearing nothing back from them. So then I feel for the teachers who are the ones being mandated to ask these questions and do these certain tests. They know some of those questions suck too and yet they still got to ask them. Getting a new and improved test into this system? Oh Lordy good luck with that. Wheels of education grind slow. That's got to stick in their craw too. (Again where the Hell is this craw?)
3) Yes, teachers do only get a taste of our kids behaviors. They do get to punch out and be done for the day. Weekends and vacations off. When I didn't have a kiddo, it was really easy to leave my job at my desk. Except those times I got hurt on the job. I have been kicked, punched, slapped, and bit. Things thrown at me. Property of mine destroyed in front of me. I had to take a class every year to learn the latest physical restraint Du jour. I think I was trained in four different kinds before I stopped working in the field. (The plus side of this is I always did feel prepared if I was by myself at night in a parking lot) I suspect this has happened to a lot of teachers too. They get the glory of all this while making a pretty pathetic paycheck to boot. I'm not saying their martyrs here but let's face it. They ain't doing this for the money either. Lets give them credit. They could leave. Instead they choose to show up at work the next day like nothing ever happened and teach again.
4) Money. We're broke. They're broke and schools seem to be the last on every body's list for funding. We fight for the services because we want what is best for our kids. They're stuck in districts that don't have it to give. Another reason everyone comes kind of pissed off at the IEP table. Who's gonna win that round because it really is any body's guess. Therapists and doctors tell parents to get such and such services. Insurance won't pay. They claim the schools will do it. The schools can't always though. This vicious cycle is stuck on repeat. Lots of things getting stuck in various people's craws. Craws epidemic ensues. Someone starts a Facebook page on Craw Stucking Awareness.
My point is, we BOTH have to remember that the other is not the enemy. We have to take a deep breath and remember why we are there. Now I know there are many of you right now who are ready to write a gospel according to your experience in retort. Just take a moment before you do. I'm not saying go in with guns blazing but aware. I'm asking teachers to realize the utter drain we parents feel on a daily basis. You went to school for this stuff. We didn't. I know no parent gets handed a guidebook but we really get tossed through a loop into this special needs world. So be patient when you have to explain stuff to us a second or third time. It's your day at the office but it's our kid's life. I promise I won't go into it thinking you're all out to get me. I know you get paid a crap salary and I'm going to give you a nice gift at the holidays and the end of the year. I promise it won't be another coffee mug because I know you will probably collect a good thirty of them over your teaching career. Just know I'm in it for my kid and I'm "that parent". I'm involved because I want better for my kid.
I'll even share a side of fries with ya. :-)