Sunday, October 2, 2011

The History

This may seem a bit  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 :)


  1. God, Rhonda. What a journey. Even though I knew bits and pieces, seeing (reading) everything in one sitting is so overwhelming, I cannot begin to imagine all your fears, tears and literal scars. I hope you are through the storm and on the other side. You all must be so tired. A family full of love and hope, but a tired one, too.

  2. Oh Rhonda! This post just shows me your strength and your love!! Through all the battles with everyone, you have remained a rock and got Tommy absolutely everything you could!

    The meds that he was on for five years really gets to me!! Why could it not have been done sooner - health care providers often suck! We always here about our childrens' delays - what about the health care delays?! Delays in diagnosis, in treatment, in referrals!!! As parents, we are so in the moment, just trying to get by that these doctors in our lives should be looking at meds and treatments and figuring out what to do about changing them to help- not in 5 years but in a month!! Time is precious. (Side effects are scary too.)

    As a visual learner, I'm really cheering for Tommy and you with this arts teacher thing. I so hope it works out!

    Your advice about NOT making friends with these people is so true!! We have to do what is best for our kids. And that nearly always means being a bitch. I consider that label a compliment! ;) Thank you for sharing your struggles here for the rest of us.

  3. You guys are so great. Thank you for your comments. Yes, it's been a journey. We all have our uphill battles. I hope, with all my might, that we all make it through these battles with our wits in tact, and our hearts happy, and our children together, happy and flourishing. Love to you both :)

  4. Okay, sounds like you've had QUITE a journey.

    I feel very very fortunate that my little spud isn't particularly aggressive. There are bites, but nothing like what you're talking about.