Thursday, September 19, 2013

Hell hath no fury.

"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. :-) 


  1. I love you. I find vodka on the rocks works best.

  2. My daughter's 3rd & 4th grade teacher was talking to me in the school parking lot while I was going through a particularly hard time, spending the morning crying with the parent support group social worker, trying to hook me up with therapy, and she said words I will never forget, "We chose to do this for a living, you did not. You're doing the best you can. Let us help you." I love her. I love my daughter's school. But sometimes we can get so overwhelmed and instead of bawling all over the place, we put up our guard and it comes across as anger, or a chip on our shoulder. When in reality, we're only trying to hold "it" together.

  3. Yes WE parents are ANGRY... not ALL of the time but a damn good part of it..Why... one simple answer.. WE'RE CONSTANTLY FIGHTING!

    Fighting for our kids to be seen buy doctors..FIGHTING to get into the doctors to refer our kids to Specialists...Fighting the school to recognize that YES our kids have a very UNIQUE and QUIRKY way of learning! ( Remind me my daughters Teacher and 4 SSO workers need more than a gift card at Christmas this year!)

    We FIGHT in the family to get those around our kids to COMPREHEND the difficulties our child has...We FIGHT to get the family to acknowledge the fact our child is Autistic... We spend all our waking time FIGHTING! Systems...Bureaucrats...Society..Relatives....Doctors...Specialists...Schools...

    WE forget US sometimes and we end up a little lost out on the battle field that is OUR KIDS NEEDS just to get through the confusion for them that is life!

    Sometimes WE also need a reminder that occasionally....It is OKAY to pull off the soldier caps we have on as parents and BREATHE!

    And even US ANGRY AUTISM PARENTS....well every now and then we also need someone to step up...take the battle plans from us for even a short while ..and just give us a hug! A little reassurance that really... WE'RE NOT in this fight alone..That really we are in fact fighting for the same cause as every other parent out there who is also on the spectrum..and even those NOT on the spectrum.. OUR KIDS.... and just occasionally if that person who comes along to take those Battle Plans out of our hands for a few hours has a bottle of wine and a good ear... then I think some how..we wouldn't be quite so angry!... ( oh an a full nights sleep..or even 5 hours solid sleep..that would BE AWESOME!...10 years 7 1/2 months and counting! (Bless my sister who takes her for me every few months just so I can be me and get some sleep!))

  4. You ruin EVERYTHING

    *stomps feet*


  5. craw - a pouch in many birds and some lower animals that resembles a stomach for storage and preliminary maceration of food
    So it's like a pre-stomach. Some sources equate it to also being a lower throat area. So things stick in your craw=they are hard to swallow. Yeah "Autism moms ruin everything" is definitely a phrase to "stick in your craw" and chew on and TRY to swallow. Anyone chiming in to tell us what that means?

  6. I'm angry just reading this!
    Which just makes more angry!!!


  7. hmm, i hadn't really put a whole lot of thought into this, but since it's been pointed out, I guess I am a bit angry at times. I think your list is pretty much on point as to why. the only thing I could add would be that sometimes anger is just a defensive reaction. I constantly feel like I am in defense mode, defending my son's actions, defending our reasons for doing the things we do, defending our rights against the school district, fighting for everything they/ we need etc. We really are soldiers... despite all of the outreach and awareness efforts, it still feels like us vs the world

  8. 3 parts pineapple juice, 2 parts Midori, 1 part vodka. We make it in pitchers at Christmas. And after IEP meetings.

  9. I think it is wonderful that this teacher was interested enough to ask! That's how you tell a good teacher from a bad one. Who asks the questions and really listens to the answers? I wish there were more like her. Unfortunately, many of us have been blown off, lied to or been taken advantage of by some teachers/therapists and administrators. We learn our lessons quickly, and in the process we get a chip on our shoulders. Nice guys finish last. Blind trust robs you blind; We learn that the squeaky wheel gets the oil and we learn to squeak. We are also tired and cranky, and feel pain for our children in a world where they are often misunderstood.

  10. I'm tired and being asked stupid questions or dealing with clueless administrators makes me damn cranky! I'm tired and cranky about worrying about my kid all the time - just because its bedtime doesnt mean it switches off. I'm angry that my kid gets picked on because she's different. I'm really pissed off that I have to fight for my kid every single day. Pastries and Chai are a must after IEP meetings... and a nap.

  11. I agree with Rosemary. I come to the table angry because 9 times out of 10 whenever I'm dealing with someone outside my immediate family (hubby, Sunshine, baby girl, and me), I'm constantly having to state my case and argue in my son's defense. Even with his is it even the two who have babysat him almost every single day since he was an infant still don't see what is so plainly obvious to me? Sunshine has an official Dx...but no, the neurological pediatric specialist at one of the best autism centers in the world doesn't know what she's talking about. The fact that he's had an IEP and has been in special education since the day after he turned 3....all of the people involved with that are mistaken. WTF? You have 4 grown kids! HOW can you not see the differences?

    So, when I constantly have to explain him and his behavior to people who should know better, who should get it...should get HIM...of course I'm going to have my hackles raised when I go into a meeting with strangers to discuss my son and his weaknesses (let's face it....that's what an IEP meeting is).

    Add to that the fact that you have 20-year veteran teachers who are very nice but don't know the first thing about autism or sensory processing disorder who want to lay the blame for my son's behavior on him. Who, when we have a meeting over my son having an absolute meltdown where he ended up throwing everything (and I mean EVERYTHING) he could get his hands on at his teacher and when he was marched to the vice principal's office he grabbed the time out timer off her desk and threw THAT at the teacher responded that there was nothing that could possibly have set him off sensory-wise in her classroom when both hubby and I said there had to have been SOMETHING that set him off in the first place. Who isn't following the IEP which says that my son gets one break scheduled into his class day - one that he doesn't have to ask for but is provided regularly anyway.

    I get that I am his advocate. His ambassador to this strange world. But dammit, I'm already tired of having to teach lay people what things to look for. My son can't be the only student in 20 years who has acted like this. How can all of these people sitting at this table honestly not have any experience whatsoever with kids who have sensory issues?

    So, yeah. Even though I plaster a smile on my face and rein in my temper, I'm sure some of that anger slips out. I try to remind myself that we're on the same team, but sometimes it's hard to do.

  12. We gave up. Started homeschooling. Not angry anymore. MUCH happier. I know, right? My thoughts too- we could NEVER do THIS full time. Well, we are and it's not perfect but it's better than fighting all the time. Now WE decide- not them. Not another IEP that "sounds good on paper". Join a co-op. Find other parents with special needs kids- there's a BUNCH of us out there.

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