The Truth Hurts

It's been an awful day.  I spent a good portion of the day in tears.  I promised myself that I would share stuff, and that includes the tough stuff.  Today was one of those tough stuff days.

I read a  story today about an autistic kindergartner that did not get lunch at school because there was an issue with the bill.  This story rocked me to the core.

It comes on the tail end of  this story about an autistic kid who was left to ride the school bus for 5 hours.  This story made me really upset.

And in the Spring this one surfaced about an autistic kid who was bullied by a teacher and an aide.

So yah, it's been a heartbreaking day for me.

I understand these stories have been around.  And I understand this is not the first time an autistic kid has been subjected to some awful event in the course of time.  I also understand that kids who do not have autism have also had horrible things happen to them in the school system, on the bus, in the lunch room.

I get it.  I really do.  But let me share this.  My kid interacts with the world differently than any other neurotypical kid.  Right now, my kid is non-verbal....and although she's making progress I do not know if she'll be able to speak her needs in 6 months (when school starts for her).  So stories like these terrify me.

Nea does not communicate her needs.  Right now she has parents at her side that are pretty savvy in anticipating her needs as well as trying to guess what she may need along the way. She doesn't eat or ask to eat or drink unless we put something in front of her.

We are in the process of trying to teach her how to use these communication cards.

And until you have to live in a world where this could possibly be the only communication tool your child has for several years.......you're not going to understand this fear.

I don't have any issue being my daughter's advocate.  And I don't have any problem getting out my Mama Bear paws and taking swipes along the way.  But what I'm most upset about....and what I cry about with the loudest wail.....

Is that I have to in the first place.

Her Poppa and I do everything we possibly can for her.  And on a busy morning of the very first day of school I can really see how the lunch money piece gets lost in the shuffle.  A new routine, teeth-brushing fights, hair combing battles, clothes that may be itchy and get removed so several other outfits are tried, picky breakfast eater and it takes 4 tries of different items before a food is ever eaten........I could totally see how I might forget to stick the $3.00 in her backpack, or pay online or whatever the process was.

But where was the common sense?  This kid was SITTING IN the damn lunchroom .....no food.  Not one adult in the scenario thought , "Wonder if we should give John Robert some lunch?"  Yes, mistakes happen....but this is of epic proportion.

As a parent, even if I do every thing down to the letter and I forget something.....will someone step in the gap ?

Tonight, as we are going through our evening routine, we notice that Nea's toe is bleeding.  It didn't  just have some blood on it.....but really bleeding.  I pick her up to inspect it closely and see a big puncture wound in her toe.  Blood is dripping onto the floor and we take her upstairs to clean it up and make sure it doesn't need stitches.  (Once I got it cleaned up, and looked good I think the wound will heal okay.)

Nea was oblivious to it.  No crying.  No "ow!" No running to one of us for comfort.  Remember, her sensory issues play a role in how she perceives pain.  Apparently, either the feeling was so deep and painful that it was comfortable OR she didn't register the message at all.

And on top of this I have to worry about if my kid is going to be fed lunch?

Just to bring it all home we now have a copy of a letter that reads.....

"Dear K...
Please accept this letter as confirmation for referral from the XXX County Department of Public Health, Child and Family Connections, Early Intervention Program to XXX School District # XXX for Nea to begin the transition process into a 3-5 year old program." 

And so it begins.....

I want to make it perfectly clear that I do not for one second believe that every school teacher or every school district is below standards.  In fact I believe that there are many, many wonderful educators and administrators who have the best interest of kids at heart.  But I'm not naive enough to think that we'll never come in contact with a "bad apple" along the way. 

We all have issues.  The world is harsh.  Everyone has problems.  Yah, I know.  But today is the day I grieve for the fact that the world I'm sending my child into may hurt her more than help her.

And it's the saddest realization, ever.