Thursday, August 4, 2011

Meeting Results.

I knew this wasn't going to be a good meeting.  We just had the IEP 2 months ago, and it's very obvious that we're not going to be able to keep up with it.  I'm sitting here with enrollment papers, that I don't know if I should waste my time filling out.

Second time in a row, the Director of the School confirms she'll be there, and she doesn't show.  That pisses me off. She does this a lot. 

So there's the 5 of us. We're literally writing up a tally sheet of pros and cons to each of the options. So here is what they are. 

Option 1- Autism Scholarship.  The school will put together the IEP for me. That's it. They carry no responsibility other than  keeping the IEP's scheduled.  For that, I would get $20,000 to educate Tommy on my own. I would be in charge of FINDING people, interviewing them, over-seeing them. If I have an issue, its all on me.  The district solely assists in writing the IEP only. 

Option 2- Home school.  My district will give me -IN WRITING- consistent personnel to come in and do what needs to be done. 

Option 3-  DD will home school, provide the personnel as well as transition him into their program (as slow as necessary. Starting at 1 hour a week and working our way up). 

Option 4- Residential.  The school Tommy attends, has a Boarding Academy.  Everyone is recommending Tommy be placed residential.  

I've thought about residential so much. Especially lately. Because I can NOT emphasize just how TIRED I really am.  Its been me. Around the clock. Non stop. Every waking minute.  And, a few middle of the night minutes to check for medication side effects. Burnout best describes me. And that's with help from my husband AFTER he gets home from work.  

I sat there listening to all of them tell me how I can't do this forever.  How Brianna deserves a better life than this. "imagine being able to go out as a family..."  I fell apart.  I AM tired.  I'm freaking EXHAUSTED! 

I came home, and tried to open the topic with my husband.  I knew it wasn't going to be easy. I couldn't finish the sentence.  It was on! After 30 minutes of going back and forth, I decided it would just be best to shut down completely. And so, I did.
Shut the phone off, left the computer, and went into lock down.  I always have said, residential would be for when EVERYTHING else hasn't worked.  WORSE CASE SCENARIO   Are we REALLY there now?  Is this it??  Have we explored EVERY avenue??  

Today, around 3pm, it hit me.  We have NOT! I was sitting in the closet of a bathroom, on the floor, head on the toilet, sobbing.  I needed an answer. And there it was.  

Monarch is fantastic.  I have a ton of issues with them, but only because I EXPECT perfection from the staff.  It really is a great school.  But, they're not so great with Tommy's complexities.  Tommy is a master manipulator. He knows what buttons to push to get out of a situation. He's the WORSE kind of Autistic.  High functioning with severe Behaviors.  You can NEVER ever EVER drop your guard.  They do. And he knows it.  5 years, and we've overcome nothing. The problems have only gotten worse. The hours drive EACH WAY is very difficult on him AND me.  

 ----------------------------Decision time -------------------------

"I will take option 2 and 3 please"

He's not going to residential. (these are still the same people that called Job and Family services on us not 6 months ago!) Not yet.  We're not there yet.  My plan is to start with Home schooling.  We'll do that for a month, 2 if needed.  The district  will provide the (CONSISTENT) personnel, while DD will provide the Aid. That Aid will be the person that will eventually transition him over to their day program which we'll start 1 hour at a time 2 times a week and work our way up.  Fortunately, Tommy has a lot of credits.  He COULD graduate at the end of this upcoming school year (technically he's going to be a JR in high school.) All of the extra tutoring paid off.  However, if I graduate, he will not be eligible for services through DD until AFTER he turns 22.  He needs to be in a program. He NEEDS the social learning.  His academics are almost done.  That was supposed to be the hard part.  But for Tommy its backwards.  Academics was EASY for him.  He's terrified of the social stuff.  He hates it.  More than 10 minutes and his anxiety is through the roof.  He NEEDS to develop.  I can't teach him this with trips to the grocery stores.   

My first idea was, to explain to him that, this is whats going to happen.  If you don't abide by these rules, you will have to go have sleepovers at Monarch and come home on the weekends.  (in essence, using monarch as his punishment.. threat.. something along those lines. The repercussions of not following the rules. I decided not to go with that.  Tommy, without knowing it, gave me a better idea.

He was getting out of the shower, and randomly started to talk about California.  He loves it there. Particularly South Lake Tahoe, where my parents live.  There's casinos there.. lots of hotels.  Its MECCA for Tommy.   The past 2 years, he had FABULOUS school years and was treated with trips to CA.  This past year, was horribly awful.  I was too afraid (scared to death) to put him on a plane. And he knows it. "you have too much angry happening for me to put you on a plane".  It hit me.  You want to go to California??? Oh Buddy, lets sit down and have a talk.  I explained the "school at home" and "going to a new school". His replay "no more Monarch?"  Nope, we're all done there. He says "ok" and walks off.  (there's MUCH more talking to be had.. this was a GREAT beginning however)

Its going to work.  It has to. He has no choice at this point.  Now he's got to decide, to make it easy, or very hard.

Nobody else knows this plan outside of this house  I still have to get this all approved (which im sure i will have no problem getting it done).  I'm excited.  I get to be LOCAL. A LOCAL parent.  No more commuting 100 miles a day!!! 

I really need this to work.  It WILL work.  

Most importantly, I HAVE A PLAN!!!!!!


  1. We have our IEP coming up in a couple of months. Last year it was scheduled last minute and it was a disaster. At least this time I know that we have to have one every year. They tried to blame us last October for not rescheduling, but we've only had 2 including that one. We're still new to this game. I have no idea what's going on or what to expect. The whole process feels...well...processed. Like our daughter is meat and she's being checked for contagions to make sure she's safe for public consumption.

    This year I'm trying to get on it earlier so there are no surprises. I just want them to fill out their damn forms and let us move on -- our daughter is in a private school for Autistic children and peers. Our son is a peer in the same school, two years ahead of her. The Autism Scholarship is the only thing keeping us above water right now, and a few meager benefits from the county DD. Insurace in this state (Ohio) covers nothing. At least I know about the $7000 remainder of tuition to pay this year instead of being blindsided by it like last year.

    I share your pain, but can't imagine where you are in your life. Our daughter is only 4 (5 in a week). Sometimes fear of the future is suffocating.

  2. Good plan. From your point of view it's the best option, in Tommy opinion it will be the 'least worst' option of what's available. Best of all, it's not irrevocable and you can keep reviewing how it's going - I'm guessing that monitoring the arrangements will be easier if it's happening in your house. Good luck.

  3. I give you so much credit for realizing you haven't hit the wall of last resort. It shows you are a much stronger person than you probably think. I really hope this new plan goes well, and that Tommy earns his trip to CA. I'm pulling for you guys!

  4. @TH3 eNINJA You're using the Autism Scholarship? I cant imagine 20k covering the cost for school. WOW! Im just learning about the scholarship. I wont take it because I need backup. If I take it the school district can not help me with anything more than the IEP. Tommy's in a Private school for Autism as well (ran by the JCC in Shaker Heights) here's their website if you want to look at it Their tuition is outrageous!!!! $72.5K for the school year and 6K for ESY. The classrooms are 8 kids/1 teacher/ 2aids/ 1 speech therapist. There are smaller classrooms for kids that require smaller settings. But, we're leaving there now lol. I had the WORSE IEP's when Tommy was younger. We moved a LOT so each time we went to a new state, I had to do a crash course in the state laws. That effing SUCKED! NY was the worse. Dont ever move there. Especially Long Island. That DICK of a Special Ed Director, i wish eternal explosive diarrhea on that "man" (term used lightly). Again was trying to keep Tommy in an autism specific school and he fought me tooth and nail. Wanted to FORCE inclusion. Tommy could NEVER handle inclusion. 5k a year we borrowed for attorney fees. The final year he took us to Due Process. The day before the hearing, he signed the paperwork. As we were leaving, his grandson was diagnosed. He had the BALLS to come to me and ask for recommendations. I walked away.. laughing. Laughing until he couldnt hear me anymore. These people I tell you, I dont know what goes through their minds. Im not a big proponent for inclusion for all kids. Tommy from day one at the age of 3 couldnt tolerate a special preschool of 12. He would hide in whatever corners he could find. It was never going to happen. I don't know the Cbus area all that well, but if you ever want to pick my brain, don't hesitate. I have good connections up here that could give you some help as well.

  5. Thanks Jen. I had to really reach down deep these past 2 days. I dont know how I get over these humps. Im thankful for my meds!! lol Seriously though.. I had to really take into consideration my husbands feelings (hard because I have always been the one calling the shots for Tommy), I had to talk to my daughter and ask her how SHE'd feel if I sent Tommy away (that killed my heart!) and honestly, Tommy hates that place. I mean really HATES that place. The only person hanging on to that school.. has been ME. And, thats not good for anyone. I'm scared to DEATH that im making the wrong decision. Most of my "friends" (other parents) think I am "burning a bridge and not doing whats best for Tommy". Thats ok... they're all bitches anyhow that i only associated with because we share a common diagnosis. These same bitches take services and money from the country only because they CAN. Not because they NEED them. If this blows up in my face.. i've come to the part where.. I'm ok with that. No matter what.. we're just done with that school. Period.

  6. bbsmum - Thanks for your comment. I do think this will be much easier. He's at the age where, he needs to be local. His community needs to start working for him. His school is 3 counties away. The drive alone has been taking its toll on him, me AND my vehicles. Im nervous.. but feel very good about my decision. Now, if these people would pick up their phones and return my call.. we could get the ball rolling! :)

  7. Jesus. This is some scary stuff - IEPs. We're trying it again - new state - but you know, you've read. I just want so much for my sons to be the best them that they can be. Their only shot, I feel, is an ABA autism school as opposed to this reverse mainstream bullshit where they do not demand your kid do stuff - "participation optional" school does not work for kids with autism. I am secretly glad that the Dick director in NY now has autism in his life (not to wish that on any kid), but this SOB had power to affect so many families' lives. And he wielded that power like a sword. What an asshat. Now he will feel our pain.