Saturday, July 16, 2011

I think we're getting pushed around. And, I don't LIKE it one bit!

So here's the deal. If you've been following our story, Tommy's had another "psychotic breakdown" so to speak.  Honestly, we don't know what else to call it.  He's on new meds, and coming off of an old med, so there's been a LOT of sleeping, toying with the dosage, sleeping more and so forth.  

While all of this is going on, I'm battling some of my own hopes/fears that i've had for Tommy's future.  He attends the HARVARD of Autism schools.  Its a LONG commute.  The commute is MOST of the problem.  After the (at least) hours drive to get there, he's zonked.  He's not preforming there. He hasn't been for a long time.  It's been a non-stop battle of task-avoidance and outright non-compliance.  LOTS of anxiety.  Lots of actual FEAR. There's no rhyme or reason to this that I can make sense of.  Other than, social anxieties maybe?  I'm totally guessing here because I don't understand what Tommy's experiencing.  And, he's unable to communicate to me anything other than "i want to stay home".  Whatever he is going through, i feel it is NECESSARY for us (as a family unit) to help him through it.   

Wednesday, we toured the Board of DD's vocational program.  It's a really good program, something that I would actually place Tommy in just to end the commute to his current Facility.  Tommy could stay local, continue to earn his credits for his diploma, and all could be well.  However, is physically a BIG facility.  Lots of rooms, hallways, a giant cafeteria.  It took Tommy about 20 minutes for the anxiety to kick in. (they were telling him all of the RULES in each of the rooms. Here look at this! and this! and this!) It was just too much for him.  I looked at hub and said, "you gotta get him out of here".  It was too late.  Panic had set in.  He cursed dad out in the truck for a good 20 minutes.  He was so worked up, he was TAUNTING dad.. trying to pick a fight.  THANKFULLY, Dad just stood outside the truck while Tommy laid on the horn cursing.  I finished the tour, and went back to the truck and we all went home. My heart was crushed to see Tommy experience that. I suffer from panic/anxiety attacks.  I know what it feels like.  For the first time, I KNOW what he was feeling.  And I was SO SORRY to have put him in that situation.  It's a good program, but he's no where near READY to enter ANY program at this rate.  I voiced this to our case manager.

Yesterday, our case manager, and the Behavior Specialist came to see Tommy in his own environment.  It was his lunch time, so we sat at the table with Tommy.  We're talking about likes, dislikes, sensory issues etc.  When Tommy finished his lunch, he put his dishes in the sink, grabbed his iphone, and went upstairs.  That seemed to bother her.  I don't know if she was upset about him having his own iphone in general, or ... i don't know what.  We're filling out paperwork, and she's taking jabs. Like "well I wouldn't want to go anywhere either. Why? He's got everything he has right here".  I gave her that look of WTF ARE YOU TALKING ABOUT?!  "excuse me?" She says "there are no demands. he's got control of tv's his own iphone, he comes and goes as he pleases..."  I'm in disbelief.  I correct her.  "He has the iphone because his commute his LONG.  We drive 500 miles a week (when we are in school) and he needs something to do to pass the time. " She snickers, like I'm just another mom of a spoiled autistic kid.  "well how many more cable boxes are you going to let him destroy before he looses it for good?" SERIOUSLY?!  Umm, as many as I want!!  Its not like YOU'RE paying for them!  *smh* "All he has to do all day is just sleep and eat!" yeah, that one really pissed me off.  I had to remind her that we're going through MAJOR med changes.  Do you REALIZE the side effects of Haldol?!?!  Even my -eye candy- case manager, stepped in and informed her on that.  She scoffed. 

So since I don't want to put Tommy in her program RIGHT NOW, i get attitude.  Her exact words were "well, if you continue to let him stay home and have his way, it's just going to make transitioning him into a program that much harder" Ok, I get that, but are you taking into account the MENTAL BREAKDOWNS this kid has had this year?? Then she says "we have a lot of clients (clients.. i hate that term for my son) don't WANT to go to school/work.  In that case we will come and get them and MAKE them go."  Ok, we can talk ABA all day long, and talk about the principals of "you don't get to enjoy EVERYTHING you do in life" but, all of this FORCING, and even being MADE to do things without his INPUT being considered, I don't approve of it.  If I wasn't the only one here with Tommy, her and I would have had several words.  But, if I get upset, that upsets Tommy.  I can't have that happen right now.  

I normally don't work with these Agencies.  They tend to seem like our kids are their Cash Cows.  I hate that.  I don't want my son STRONG ARMED into attending a program.  All you're going to do is make this situation worse.  We're trying to teach him ALTERNATIVES to aggression.  Yet, you want to strong-arm him into your program? See, this is why people get STUCK with the Board of DD.  It becomes "my way or the highway".   

At this point, the highway is looking more and more accepting.  Right now, unless sometimes does something to change my mind. the Board of DD can BITE ME!


  1. I am at a total loss as to why she would treat you and your family that way--in your own home!!! From what you are describing she was rude, belligerent and downright belittled your whole situation. Is there any way to get her replaced??

    I have no idea all the stress that is involved and I can't even begin to imagine. Stay strong and give someone an ear full--they deserve it!

  2. I know why. It's money. Tommy's scores HIGH PRIORITY right now because he was pink slipped. That means instant waiver. I'm looking to pull him out of a school that our district pays $81,000 a year for (including ESY) and they want to get him in THEIR programs for guaranteed money. School districts are struggling. A lot of our teachers are getting laid off. Somehow i've made it this far without so much as a complaint from my district (a lot of other districts refuse to pay for esy for reasons of cutbacks) and they know this. Im sure that in-lies several people that really care, and are doing their life's work. But, to administration, I hate getting treated like my son is just a "client". Clients pay for services.

  3. Who is letting this ghastly woman work with vulnerable youngsters? Trust your instincts. A program is only as good as the people who deliver it.

  4. Sorry you had to experience this women who obviously is clueless. As if mothers have enough issues and decisions to deal with making when it comes to our children and then along comes incompetent and insensitive workers,  so sorry. I am at my ropes end with insurance company workers lately, I swear being a liar has to be the top quality on their resume when they get hired to represent the insurance companies.
    I wish you luck, wisdom, and strength in finding the right program for Tommy.

  5. When did students or patients or children needing help start becoming clients? He is not going out for a cereal commercial. That lady was tottaly inappropriate.

  6. OMG, if this is my future I am screwed. I would have ended up screaming at that woman and probably throwing her out of my house to avoid beating the shit out of her. Not cool...