I don't like roller coasters anymore.

It goes without saying, it's been a trying week here.  I've been carrying this load on my shoulders now for 3, almost 4 months.  It's a very heavy weight.  Pulling a minimum of 16 hour days.  Waking up and being mom, getting my daughter off to school, keeping Tommy occupied and engaged ALL day, running errands, doing mom stuff with my daughter, trying desperately to spend a minute here and there with the hub, wrestling the dogs, home school on top of all of that.  I started slacking.. giving Tommy more free time.  He doesn't do well with free time.  Anything more than 45 minutes, he's either going to fall asleep which will lead to a CRANKY rest of the day, or have him up all night. It really boils down to boredom.  WE'RE BORED! The weather is cold, wet and windy, so doing anything outside it out.  Going anywhere is out also because money is tight now that we're not going to school anymore.  


This week, has just been ... trying.  We had one incident that came SO FAR out of left field, we all were left with the WTF!!! look on our face.  We're sitting here watching tv. Hubs and I chit-chatting. Tommy was on the Laptop, and Brianna was doing her homework.  A Fiber One commercial came on. You know, the one where the parents are trying to trick their son into eating the NUMBER ONE cereal? (the dad is covering the FIBER word on the box)  Well, this INFURIATED Tommy.  He jumps up, runs over to the Cable box, and begins ripping it out of the wall.  I run over and start wrestling the box out of his hands.  Hubs runs behind me and is catching everything falling off of the shelf in the process.  I inform him "this is UNACCEPTABLE behavior, now it is time for bed."  He didn't fight back... surprisingly.  I follow him upstairs, and lay with him to make sure that he's calmed down.  The next day, he's informed that he gets to watch ZERO Mad TV videos on youtube as punishment for touching the cable box.  He's actually ok with this.  We go over the rules again.  We talk about our options when commercials come on that we don't like such as changing the channel, turning the tv off, even just closing our eyes.  He's just going through the motions with me at this point.... but, we do successfully reach the UNDERSTANDING. That comes later.


The next day, dad preforms the update on his iphone.  We hadn't sync'ed it a few weeks. No big deal... yeah right.  He takes his phone up to his room and comes down about a half hour later.  "where are my 40 pictures!?!"  Dad looks through the phone, and there's nothing there.  All the pictures are just GONE.  Dad, being the electronic GENIUS just looks at me with a blank stare.  I immediately take him upstairs to lay with him while dad FIXES (!!!!!!!!!!!!) it.  While we're laying there, i'm just trying not to say anything.  I'm already exhausted and running on fumes. Its almost 9pm.  I'm pretty much done for the day.  We're about 30 minutes into laying there when he taps me on my shoulder. I open my eyes. (he typically speaks in a mono-toned voice) He says "i want my 40 FUCKING pictures RIGHT NOW you FUCKING BITCH!"  Yeah I just lay there.  My whole INSIDE has now, crashed.  Rock bottom? Oh I'm on my way.  If there was a negative thought, it was going through my body.  I calmly get up and come downstairs and inform hubs that if he doesn't get those pictures back, to start preparing the house for implosion.  He got the hint.  An hour later, he preforms his magic and returns the iphone to Tommy.  The world is ok again.  I however, am not.  I see it all coming back to where we started.  


The next day, is home school day.  I spent the day going over the schedule.  We had a lot to do that day.  Not really WE, mostly me, but he wanted to come along for some of it.  No big deal really. Well we start the morning off at Walmart to do our shopping.  I've got my list, he's got his.  We work to get all of our list items.  All goes well.  We get to the check out and we're moving along. All of a sudden, he moans and is holding his stomach. "my stomach hurts!" It startled the checker, AND me!  We were almost done so I took him to the bench and went back to pay.  But by the time I got back to him, he was giggling and he seemed fine.  So we head home.  He heads upstairs for some free time (dad was home) and I head out to take Brianna to the Orthodontist (actually dropping her off there and hitting 4 stores to get some sale items). That appointment got all screwed up and ruined the rest of the day.  So, I had to miss MY appointment with the Gastro-Doc. *sigh*  Oh well, home to relax finally.  I get back home and inform Tommy that he has 1 hour until Home School starts.  


Well, 15 minutes before he arrives, Tommy's turned into Satan.  He refuses to get out of his bed.  I lure his with anything.  Food, tv, computer.. NOTHING is working.  Then, in a voice as CLEAR as day he says "get the FUCK out of my room.... NOW!  Yeah, I'm not looking for a physical fight over 1 hour of home school.  So i call the instructor and cancel.  By this time i'm INFURIATED!  I am so mad. All I can do is cry. I leave him in his room and just come downstairs (because he can't handle seeing anything outside of NORMAL when it comes to emotions. Sadness makes him mad/upset)  The more I cry, the more I just fall apart.  The next hour and a half, he just stays in his room.  I had removed his remotes and iphone from his room, so he had nothing to do in there but stare at the ceiling. 


Later that night, we are going through the routine as we usually do.  I go to get him out of the shower and he's not quite hysterical, but really wound up. I'm trying to dry him off and he rushes over to the potty and says "I HAVE BLOOD!" Blood!? What do you mean you have blood.  I look at his legs.. and there's a stream of blood coming down his leg.  WTF!?!?!!?  He's having issues with getting his stool to pass.  Once its out, i go to check things out.. blood, in the toilet.  O M G. Of course, I fall apart again.  It's all making sense.  The crankiness. The stomach aches. Holy shit.  


The next day, I call the doc.  She's out of the office, and under the circumstances, I don't think it's a good idea to see the doc in the practice that he's not familiar with. So we take the appointment on Friday to see the regular doc.  Note- the blood has lessened, but is still there. 


So yesterday, I am determined to get through to him.  If you don't feel well, thats one thing.  TELL ME and we'll cancel school.  You DON'T Curse me out, and act like a complete asshole.  He looses his madtv for a second day. He's ok with that.  He's issues a punishment/consequence for being non-compliant for homeschool.  After breakfast, I explain to him that his behavior in regards to missing homeschool was completely unacceptable.  He "works" for hotel stays.  I inform him that if he still wants to go to the hotel in the winter time (that's a whole other story) then he must do work for me around the house. Extra chores.  He understands.  So yesterday he did every piece of laundry in the house.  He sorted, got the loads started, added soap and fabric softener.  40 minutes later, he's switching laundry over and repeating.  When the loads were dry, he'd fold EVERY piece.  Of course I had to refold things, but the point what getting across.  With every load, he was reassuring me that he will get to go to the hotel in the winter time.  We have dinner, and shower.. still doing laundry in between.  Last night at 8pm, he even put every piece of laundry away.  I lay him down to bed and he says "mom, we're all better for homeschool. I will work next time".  YES! He GOT IT!


Back to the cable box.  We always watch Conan on the DVR during our dinner time.  It's one way we can spend time as a FAMILY.  He's not one to join in on conversations so .. this is how we manage.  We're all big fans.. so dinner time is great.  ESPECIALLY since Conan has his BEARD AGAIN!!!! (yes, Tommy's growing his beard again also)  During the episode, there is a commercial for State Farm/ Cars 2.  Very surprising since I had to BRIBE Tommy to watch 3 minutes of Cars 1 hahahaa! Anyhow, he was SO EXCITED about this commercial, he ran to get the camera and tripod.  He RECORDS the commercial, and immediately edits, and puts it onto youtube.  He wants to SAVE that episode of Conan on the DVR.  So step by step, I show him how to save the recording.  BAM!!! He's so happy to KEEP that episode.  Thats when it happened:
"Tommy, that Conan episode is not on the TV. Its IN the cable box. Remember when you punched the windows vista and everything was gone forever!?!?!" He replies yes. "well, if you destroy cable box, THAT CONAN, with CARS 2 commercial, will be ALL GONE. Do you understand?"  He sits there, and replies.  "ford cares".  Why does ford care?  HELL IF I KNOW! He ran off to go watch his video he made.  We did talk about this several more times.  Even the fiber one commercial came on since.. and there was no touching the cable box.  He just ignored. it.  I'm hoping this lasts.  If it doesn't.. well, what can i do.  In the meantime, he's very protective of that Conan episode.  *sigh*  Ever feel like our lives are nothing but non-stop mind games? Yeah... and my doctor THINKS I have PTSD.  *smh*  Thinks? pssh!

Welcome to Home School!!!

The day has come.  First day of home school for Tommy.  We had marked the calendar, we spent the week talking about what to expect, he actually seemed excited.  As the day got closer, I could see Tommy trying to retreat.  This is one of his anxiety techniques.  For the past week, he's been little by little he's been wanting more and more free time.  By free time, I mean spending time in either his room, or my room, playing with his iphone... or sleeping.


I was so on to him!


Tuesday night, him and I had a long talk.  "You're being way too sleepy's bub".  "why too sleepy??"  This went on for a long time..lol  I let him know that he can finish the night being "sleepy" but tomorrow, we're going to be LESS sleepy.  And... he was.  We kept him very busy.  However, as the clock was ticking.. closer and closer to 5'o-clock, i could see the anticipation building with him.  


So, it shouldn't surprise anyone that when Mr. Mike arrived Tommy greeted him by pulling his shirt up over his head and saying "I SEE BOOBS!".  I hide behind the wall to laugh (so he doesn't see).  I could see Mr. Mike fighting back the laughter as well.  As the professional he is, it rolls off his shoulders and he walks past Tommy.


To decode the situation- I really believe Tommy lets things build up like a pressure cooker (unfortunately, he gets this from me).  He'd been anticipating this "school at home" for some time now.  In a way, I think Tommy was TESTING Mike.  To get a rise out of him.  To see how far he could push.  I was so happy that Mr Mike didn't acknowledge the negative behavior.  


Once we finished the boob show, it was as if the skies parted and goodness just POURED into Tommy.  Mr. Mike set up the following schedule for Tommy.

Tommy's Schedule

1. Worksheet
2. Break
3. Windex Bathroom Mirror
4. Break
5. Worksheet
6. Break
7. Vacuum living room
8. Break (2 videos)
9. Worksheet
10. Break (1 video)
11. Swiffer (dust) fireplace
12. Goodbye Mike :)

He initially wanted to give Tommy short breaks in between doing things.  So, he wouldn't get overwhelmed with doing work.  The purpose of the "chores" is to touch-up on his daily living skills.  During the breaks, he was playing with his iphone looking up Jack in the Box commercials.  (this was entertaining because we don't have Jack in the Box here, and Mr Mike had never SEEN Jack before! *GASP!*)  It became easier to monitor the break time by allowing the certain number of videos each time.  

Of course this was so beautiful and wonderful because it WAS only the first visit.  With Tommy, the first visit is so crucial.  He decides very quickly if he will tolerate you placing demands on him. Mike passed with FLYING COLORS! I have never... I mean never ever seen Tommy excited for learning.  He's always been GREAT at it, but he's NEVER enjoyed it.  He's already checked the calendar once today to make sure Mr Mike will be coming again next week. (we're starting with only once a week.. baby steps)

He then earned his 1 hour of free time upstairs.  

Today, I am going to be contacting my district and cancelling the transition into the DD school.  I made a promise to Tommy that I would listen to him.  School is the cause of his anxiety and I am NOT going to put that pressure on him.  If he can continue to work with Home School, we'll finish his credits out at home.  The IEP will need to be re-written to reflect that.  Once that's done.. we can all stop stressing out so much! (that's my own pep talk, for me lol)


During one of the breaks, Mr. Mike and I were chatting it up.  I knew he does a lot of work at the high school, and he had mentioned that his brother is a teacher at the Middle School that Brianna used to attend.  Last night I found out that the work he does at the High School is.. subbing.  Currently, he's the sub for Brianna's Honors Language Arts class.  *gasp*  When Tommy was done, and Mr. Mike was gone, I had to have a talk with her too.  "How do you feel about Mr Mike being your sub AND Tommy's home school teacher?"  Her response? "i'm cool with it.. i'm down with this mom.  Don't worry about it".  Have I mentioned how amazing this child of mine is??!!

~~BREAKING NEWS~~ *gasp* Brianna has braces!

Yes. I know. WTF right?  Didn't we already go over this?


Why, yes we did! Tonight, during dessert, Tommy finally ACKNOWLEDGED the fact that they're not going anywhere.  After several different attempts to ask me to "take them off" then he wanted her to "just take the top teeth out then" ...




.....hahahaaahaa!!


Oh it was priceless.  You know when you're watching something horribly disgusting on tv, and you're trying not to look, but you HAVE to? That was the expression on Tommy's face when Brianna opened wide to let him investigate.  


Of course then he ran upstairs and went to bed.  He's been engaging with her more lately. I love it.  It makes me smile :)

Homeschool- the introduction

Just a short blog today. We met with the Artsy Fartsy home school instructor.  He's not so Artsy Fartsy. More like young, athletic and very nice.  I'm feeling very optimistic that this could really work.  Tommy took to him instantly. 


Initially our overall goal had been to use home school as a transition to eventually get him into a DD run program/school nearby.  The program is divided into 2 parts.  One being a school type setting from pre-school up to teenagers. The other being an Adult facility for those who are fortunate enough to get the few waivers that are available. There is a very large vocational program there as well as a horticulture greenhouse area about a good square acre in size.  The list is never-ending to what they offer from landscaping, growing fruits and veggies that are sold at the farmers market to help with funding of the program to building maintenance (during our first walk through the students were repairing sidewalks. Pouring and mixing AND laying concrete).  MANY many options.  Tommy has so many skills when it comes to vocational training.  He LOVES cash registers and is great at doing math in his head and working with money, so when he was at his prior placement, he ran the register at the store. He's ultimately lazy, so any physical activity he'll only last 10-20 minutes before he begins the dramatics of "i sooooooo tired!' lol  


Over the past couple of months, the hubs and I have been talking about... what do we do here.  We're at this turning point where these decisions we make now are going to effect the long-term goals we have in place.  We're torn between do we do what we KNOW he is capable of knowing that there may be resistance? Or, do we continue to preserve our family life, and keep things here to a minimum?  


Hubs would much rather Tommy finish out his credits necessary for his diploma here at home.  To home school Tommy, and let it be done.  We've been through so much physically, mentally and emotionally over these past 5 years. However, I'm still on the fence.  Part of me is just so tired.  I have this boy 7 days a week. 24 hours a day.  I'm seriously tired.  Most of us are able to let our kids sit in front of the TV, or the computer so we can catch a break.  I can not do this with Tommy.  These 2 things are his triggers.  Granted he hasn't had a meltdown in some time now, we can't afford to lose another TV or Computer to his 'beating the crap out of it' because a commercial comes on that he doesn't like, or the computer is 'working properly'.  My breaks come in 1 hour spurts of 'free time' where he does his preferred activity which is- lay in mama's bed and play with his iphone.  If it weren't for food, and my insistence on doing chores around the house.. that's all he'd do. So of course, I'd love to be able to send him someplace, a school or work program, for 4-6 hours a day. But, here's what's holding our thought process back.  Tommy is aggressive.  If you have an adult child, or teenager.. you know that when your child has that additional label attached to his disability, a LOT of doors close.  (i know people are anti-labels for their kids, but i am not. Labels serve a purpose. They categorize groups of individuals. I'm ok with that. I know my kid is aggressive. It IS ok to call him that) Doors close because though Tommy falls under the category of High-Functioning, he has no control over his emotions. His coping mechanisms are very limited. His meds have him stable, but that's it. He can NOT safely go into the community independently and hold a job SAFELY. The potential is always going to be there. Especially since he's STILL going through puberty.


Another aspect we're looking at is.. my husband works for the government.  The facility he works at actually has employees from that particular county's DD office.  These individuals clean the facility. Bathrooms, break rooms etc.  My husbands co-workers are disgusting fucking pigs.  They're horrible to the special needs people that come in to work. They mock them. Make their work harder. Make fun of them behind their backs after being nice to their face.  Yes I've already let the DD facility know of this but it hits home to my husband.  He see's that and does NOT want Tommy to be subjected to people like that. 


We never take services that are not necessary for Tommy.  I've said it a million times and I'll say it again.  There are FAR too many people taking advantage of the system.  I know too many people that hopped aboard the train that allows them to get funding, and they CONTINUE to TAKE the funding, when they KNOW their child no longer NEEDS that funding.  It MADDENS ME!!!!!!!!!!!!!!!  I am so stuck. Do I put him into this vocational program, and train him for a job, that he may never have? Once he turns 22, it's done.  Jobs are scarce here in NE Ohio. Employers won't consider taking someone that is a potential liability to them.  So what do I do????????  


I'm really leaning towards changing our IEP from vocational to educational (which would end his vocational training) and just finishing the credits at home.  Somewhere inside me though, a piece of me feels like i'm giving up on Tommy.  I'm really not, but I FEEL like I am.  I've laid SO MUCH pressure on him over the course of these 5 years. I really think that's what BROKE him.  UGH.  To be the holder of someone's fate, weighs on me.  I still have another month to decide.. and I'm sure it will be ALL that's on my mind for the next month.  *sigh*  I guess for now.. we just start the home school (next week) and take it from there.


Hmm.. so much for the SHORT blog huh?

The History

This may seem a bit lame..lol  But I was emailing Autism from the Lighter Side who was interested in how we got to homeschooling.  I decided to turn it into a blog since most of us don't have the time to scroll through eachothers blog at one time to see.. how did they wind up here?


So, for those of you interested.. here ya go!

My son is 17 this month so we've been through the wringer a FEW times.  We've moved a LOT.  Before moving to Ohio, we lived in NY (Long Island).  They fought us tooth and nail on EVERYTHING. I couldn't go to an IEP without an attorney. EVERY year we were taken to due process only to have them, the day before the hearing, decide to sign off on everything.  $5k in retainer fees for the attorney every year for 4 years.  Yeah the math on that is disgusting.  Tommy has NEVER been in public school. I NEVER wanted, nor allowed it.  Let me take that back. He's HAD to, try. It lasted 40 minutes (he was in the 1st grade at that point). They had given him a 1on1 (70 yr old lady). First he pushed her down and she broke her arm, then he launched a desk across the room full of 25 other kids.  From that point on, i refused to let him put kids in danger.  We fought to have him placed in the most adequate (yet a physically crumbling) charter ABA school.  The turnover for teachers for that school was horrible.  One year we went through 5 teachers. So that blew up in our face also.  In between fighting with the district, i'd home school him.  Since I wasn't a certified teacher, staff came in to do the work.  Which sucked because it was ALWAYS a different staff person.  In NY, it was just getting worse as he got older.  

I found a great school here in Ohio.  The Cleveland Clinics Center for Autism.  It's an ABA program that transitions into Cognitive Behavior Therapy. Thats where we WANTED to place Tommy.  But by the time we were able to find a house, move and get settled, a waiting list had built up.  The transition just MOVING Tommy was horrible (horrible doesn't quite explain it but.. its the only word that comes to mind). After a month of TRYING to wait for our name to come up (we were #19 on the list) things were getting out of control. I should back up and explain that.. i used Yahoo Groups to connect with some parents to find a school district that wouldn't be SO difficult to work with.  I spent MONTHS looking for this place.  I no longer play the lottery because.. moving to this district.. has been .. i can't even put it into words.  The Sp.Ed director.. she is phenomenal.  She was the one that found the alternate to the Clinic's program.  It's called Monarch school for Autism.  Not an ABA program but more of a "we'll use whatever works" kind of program.  They HAD 35 kids at the time.  Tommy works good in small numbers so I had hope. Come to find out, the tuition there was $75k a year with an additional $6k for ESY.  My district NEVER hesitated to pay it.  On top of everything, after several attempts of transportation... i was the only one that could transport him. They paid me the same rate they paid contracted companies... $100/day.  

Unfortunately, it didn't pan out.  A year after we started, they broke ground for a BIGGER facility.  Enrollment went from 38 to 98. 6 months later, it grew to 128.  do you know what 128 autistic kids from the age of 3-22 look like?  Tommy couldn't function.  They do have a residential facility on site as well.  They were growing too fast, in so many different directions, it was too much for Tommy to handle.  Then it got to the point where his staff was letting him do nothing but sleep at school.  After 5 years of trying EVERYTHING to make it work.. he broke.  He had a psychotic breakdown and attacked me while i was driving.  Trying to jump out of the truck while I was driving on the freeway.  I was able to get him home safely but he continued to attack me at home.  When I went to the school for help, admitting that the only way i could get away from him was to strike back at him, rather than help me... they called CPS.  I pulled him from the school.  After  month of fighting back and forth, my district talked me into trying again with them in their transitional work program. NOT in the "school".   Again, they were letting him sleep all day.  Come July (i have detailed blogs about this one) he had another major psychotic breakdown that put me in the hospital. Bites up and down my arms where he latched onto the muscle and pulled, ripping muscles.  He was pink slipped (psych ward).  We took a medical leave from school.  We found a FANTASTIC psychiatrist that was able to look at his medications and FIX them.  We had him on the same meds for 5 years (from his neurologist) even though they were KNOWN to cause aggression.  Once he came out of the psych unit, he was so much better.  The new meds have given us our BOY back.  Since July, there has been ZERO aggression.  When we held an emergency IEP-followup, the help I received from the school was their recommendation that he be placed in their residential facility.  I permanently pulled him from that school. 

We've been out of school since then. It's been a LONG road getting him adjusting to his meds.  LOTS of side effects.  Now, he seems very stable.  We're going to attempt some home school with him shortly, but it hasn't begun yet.  We're only looking at 2-3 hours a week at MOST right now.  I cant be his teacher. He wont work for me. I'm mom.  So the SpEd director has worked very hard on getting someone that he'll be able to work with.  He's a visual learner.  Hidden Curriculum works GREAT with him.  Very hands on.  He's academically on target however, his comprehension is only HALF of what it should be. 

In the beginning we went the biomedical route. DAN docs the whole kid-n-caboodle! After 4-5 years of that, which nearly KILLED him (LITERALLY!) I decided to NOT play doctor and listen to the professionals.    He can communicate with us now.  He laughs with us. GETS our jokes.  He's an ACTIVE part of the family now.  I'd love to just be DONE with school at this point however... I want him to have that diploma.  That's not something we can go back later and get.  I won't let him out until we get that.  He will NOT be in school until he's 22.  He's been in school since he was 3 years old.  Enough is enough already.

(I've never given this story all in one shot before.. gonna have to put this in my blog lol)

I don't prefer home school for him. But it's our only option now.  There IS a DD ran school here.. which I, long term goal, hope that he may be able to attend.. but i'm not real optimistic about it.  I have a feeling home school will be it for him.  And, we're ok with that.  So long as HE'S ok, we're ok.  

I wish i could offer more as to HOW to get home school but to be honest, its a HARD fight.  I can be a BITCH when I need to be. I never held back with the district.  I never allowed myself or my son to be walked on.  I KNOW that when its our turn for IEP's staff members roll their eyes.  I'm ok with that.  I'm not there to be ANYBODY'S friend.  That's what I want parents to know. STOP TRYING TO BE FRIENDS WITH THESE PEOPLE!! Stop being GRATEFUL that they're working with your child. They CHOSE this field to work in. They get PAID to do their job.  If they're not getting the job done right, HOLD THEM ACCOUNTABLE.  I just can't say that enough.  I'm not quite sure what else to add to this so if you have any questions please don't hesitate to ask.  This is just OUR journey.  There are so many more out there.. good and bad.  NONE of it easy, that's for sure :)