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. 


  1. Im sorry. I'm just sorry. I hate the frustration that comes with having hit walls and getting angry that I'm angry. Hurting for my son, hurting for me. Some days I wish there was better training for any person working with special needs kids. I feel like an idealist, then I feel like a failure. But we're human right? Hang in there! You're doing a great job mom!!!

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