Thursday, October 4, 2012

Not sugar-coating it

Yesterday.... I was mad!
I went to pick up Ben from his after school program, and the cute little 19 yr old aide comes up and tells me there was an "incident"  FUCK!
Out on the play ground, Ben went to play on the monkey bars.  No kids are allowed to play on the monkey bars because kids have been breaking their arms, etc......(wait.... what?) and they really don't want Ben to break his arm (um, thanks?)
Any way, there's a young girl (middle school/high school) who works/volunteers there, and she tried pealing Ben's hands from the bars.  When she did, he scratched her down the back.  the other aide goes to assist, and he's kicking and punching her.  Now Ben's never kicked or punched in front of me, but I've resigned myself to the thought the world is not out to get us.  People are not looking day in and day out to make me miserable by coming up with intricate lies of Ben's behavior.  it just is.
I ask the question I don't want to ask.  "Is Ben getting to be too much for you?'  She looks at me, and I'm guessing can't decide how much to reveal.  She then tells me that they're documenting incidents.  Basically she's telling me their dotting their i's and crossing t's becuase they're going to want him to leave (remember camp....da da dahhhhhh)
I have to get out of there again.  Now, I've loved his going there.  Outside whenever possible, even in the cold, getting fresh air.  providing him with oversight.... But it's coming.... "Ben doesn't belong here."  "Ben is too affected to be here with the other kids."  I can already hear them.  It's fucking killing me.
And at that point, I'm mad at Ben.  I really was.  I yelled, I cried.  "Why can't you just behave for 2 hours a day?  You're going to get thrown out.  I'm so angry at you!"  I even gave his hand a hard squeeze.  I'm far from proud of myself.  I'm very upset that I let this get the best of me.  He's crying he wants his daily cookie I bring him, and the Fresh Beat Band on the radio.  I throw the cookie, and tell him no.  3 minutes later, after a breath I give him his cookie and put on the music.
I have no real resource to ask that question of "Does he get it?"  His school has had the teachers rearange due to the abuse scandal last year.  If you you-tube autism abuse in NJ you'd see what I meant.  Ben wasn't involved but his teacher was moved to another class, then he had a new teacher for 6 months, and this years teacher as 2 years experience.  The social worker moved to another school, in protest, I don't know, but this social worker doesn't know Ben.  His doctor at CHOP... she see's him 30 minutes 2x a year.  What does she really know about him?
I was thinking Ben knew.  He was aware of his actions.  Ben's father was dead set on, I'm crazy and it's a symptom of Ben's autism (which really had me feeling like shit!)
I then decide to be proactive.  I call my insurance and think I'll get a behavioral therapist to assist with this behavior.  WRONG!  my husbands company provides us with healthcare, and it's free for the whole family.  That's pretty sweet.  They self-fund their insurance, so they are not bound to the autism insurance act.  And they don't provide it.  no OT, Speach, Behavior therapy's as they apply to learning, etc (basically autism) written out in the plan.
Now at this point I'm about buck crazy.  I say, to no one in particular, it's crazy how they'll pay over and over for alcohol and drug rehab, which is a bit of a self inflicted wound, but autism.. they can go f*ck themselves.
I'm feeling lost, overwhelmed. 
Anyone? 

Wednesday, October 3, 2012

but it's the weekend

I left work on Friday stressed, and ready for the weekend.
Work is going through an expansion, and that leaves me with a butt load of work to staff the place.
I won't even discuss work.
I get to Ben's after school program to pick him up, and a 1st grader asks the question I'm sure so many would like to.
"Why doesn't Ben speak our language?  Why does he just go ahhhhuuuuhhhhhhmmmmmm?"
Really?  Friday afternoon?
Well, the aide is surely flustered, but I say to the child, Ben is a little different, and the way he expresses himself is different, but when you speak to him he understands everything you say..blah."
I have to get the whole teaching moment down better.  I still don't know how to put it.
From there, the aide starts to ask if Ben had a tough night the night before..... Great.... where's this going.
He came off the bus, and she wanted him to go the bathroom.  He didn't have to go.  She then wanted him to wash his hands before snack.  He didn't want to.  He pinched the beejeezus out of her arm.  DAMN!
Now we know he has to keep his hands to himself, but are the other kids told to go to the bathroom?  Ben will ask when he has to go.  Are all the kids made to wash their hands?  Leave him be.  I deflect from keep your hands to yourself.
I then tell her you have to be firm.  When he starts that crap with me, I just have to turn and give him the "sure you don't want to rethink this before you do it?"
Now it's not that I'm looking for anyone to strong arm my kid, but who'd the adult?  Throw me a bone!  Care for him!!!
The weekend was a bit tough.  For those not used to Autism I'll set the scene... Boscov's big shoe sale.  Must have been senior citizen day as well.  Ben would prefer to be riding the escalator, and we've dared drag him into the shoe dept.  We get to the edge, and he grabs two shoes off a display and wings them with all of his might.
I duck, his father attempts to catch them.  One old woman screams, another shouts "what's happening!!!"  At that moment I almost fell over.  I told my husband lets go, we're leaving!  He replied no we're not, you're returning your shoes and getting a new pair.  OK sucker...  I then pretended not to know who they were and shopped.  At the time I concentrated very hard on not cracking.  This second, I cracked a smile.  looking back (since no one was hurt) it was a bit funny.

My co-worker suggested today I get an anti-depressent.
I'm not sure how I feel about that.  My life is incrediblay stressful right now.  Do I take a pill to cover that up?  I'm feeling waves of anxiety litterely from the time i open my eyes.  But there's cause.
I can't decide what to do.....????

Autism is so much $%^& fun!  And yet, the kid cracks me up constantly.  like he really is funny!  Loves to repeat whatever you say with the word NO.
Time for Bed - No Bed
Do you want to go to Home Depot? - No home, No De, No Po
Come on Peach Fuzz - No peach fuz
Come on Chicken Livers - Well you get the idea.  I love when one thing I call him cracks him up, and he has to laugh before telling me no.
My son has a sense of humor, and loves to give hugs and kisses.
Know one child with autism, and you know one child with autism.  none are the same.