Howling at the Moon

       Sigh... double sigh... sigh again...  I am not quite sure where (or more precisely, how) I am heading with this post but bear with me if you don't mind.  I want to discuss a little about something very stressful that happens in every disabled kid's life.  Well, more to the point, something that happens in every disabled kid's PARENT'S life. There has been drama at school.  I don't mean the word drama to sound dismissive. It's not. I just want to make sure I don't tread all over some child's personal boundaries.  So if I sound sarcastic, it's not meant to be. I am trying to speak euphemistically in order to preserve other people's privacy.  Feisty Pants and I (and her nurse who accompanies her to school) missed the starting point, in fact, I think we missed most of it.   We were playing hooky by hanging out in the peds ward at our local hospital.   So I am probably getting things all wrong to begin with.  But we are not missing the fall out from everything and it's stressful.  It's stressful on the nurses at school, it's stressful on the parent's, it's stressful on the administrators.   Feisty Pant's teacher- who is made of awesome sauce, is caught in the middle.  Most of all, this stress is going to trickle down and affect our vulnerable kids.

           So, let's just say it involves some behavioral issues that might lead to some safety concerns.   There should be a logical, reasonable answer to fix this.  But emotions have gotten involved and now the drama is setting in.  (Again, the word is NOT meant dismissively.) But I would like to point out some things .  You see, I grew up with disabled siblings, and the kind of organized parents who pushed hard for their kids so I have seen this my whole life.  Disabled children bring the WONKY in EVERYBODY.  And it's getting wonky here.  But since it's MY blog  and since I am always logical and never wonky (or wrong- why are you rolling your eyes???) and since this is one of those rare occasions where being the mommy has a distinct advantage (who's gonna fire me???), I get to point out a few things.

          One- we parent's of feisty ones are not always logical or easy to deal with.  So what?  We want the sun, moon, and stars for our kids just like everybody else.  But you don't have society acting like you should be grateful for every little pittance or crumb thrown your child's way.   You are NOT called takers or moochers or treated with the mind blowing, INFURIATING passive aggressive bigotry that is the patronization thrown at our children every effing day.  ("poor thing, what's wrong with her?")  Add to that we are overscheduled, underfunded, and stretched taut by schedules and appointments and fighting with insurance and medical professionals and governments and schools on a daily basis.  And lots of disabled kids don't sleep well. So their parents sleep even less.   Every day a disabled kid's parent DOESN'T shoot people from a bell tower is minor miracle in, and of, itself.   If we haven't actually cut you then cut us some slack.  And stop acting like we are out of control because you don't like our tone.  Put on your big grown up panties and deal with us.  We've had to learn to be tough as nails for our kids.  Deal with it.

          Two- on the other hand, parents, we are tough as hell and sometimes that's hard to take.  I am so used to automatically fighting for Feisty Pants that I don't always know when to quit.  Growing fangs and howling at the moon for my kid is my default mode.  I am smart, blunt, aggressive by nature and always in a hurry. That has lead to me being accused of being, as my friend Celtic Pants puts it, as subtle as a brick in the face.  Might I gently suggest we all learn to take a step back and be more cold blooded in our approach?  Maybe we could get things done more easily and quickly by point blank stating what we need.  "I need to know my child will be made safe at all times and what you are doing to achieve that."  "I expect my child to reach college and expect we will all do what it takes to get her there.  How do we accomplish this together?"  People who work for institutions, especially underfunded ones, are stretched taut with their own concerns and may respond better to that style of approach.

         Three- to the people who work at the institutions (schools, hospitals, therapy settings, etc.) No offense, but we don't effing work for you and your rules are NOT our problem.  Just as you should never have to be the parent to our kids, we should never have to follow your policy simply because you have a policy.  Simply put, you are not the boss of me.  I am a real live grown up and understand that your policies and procedures are there for a reason. Usually really good reasons.  But slavishly following them and not stopping to think is frankly, a sign you are just going through the motions and not really doing your job.  Then we have a big problem.  And I am right to grow fangs and howl at the moon.  Or hire lawyers and then things really get contentious.  Our disabled kids fall through all the cracks due to the fact they are disabled.  Staying nimble and learning to be flexible is important.  If you can't do that, transfer out of dealing with Special Ed.

        Now, personally, I have the perfect answer in this case.  (Do I hear another eye roll?!?)  Webcams-  simply get permission from the parents and install a cheap little webcam to the smart board.  Parents could access a website and see how the kids are doing.  Those few bullies (rare, but it happens) who work with disabled kids would be quickly weeded out.  Our kids would probaby be better behaved if we saw what they were trying to pull when we aren't looking.  Schools and teachers would be protected against unfounded accusations.  And parents could volunteer through skyping to read to the kids, lead discussions, show off what they do .  See. Simple. You're welcome.   Next up, I solve world hunger.