Thursday, August 14, 2008

Adventures in Education - Our Story

In 2002 our son attended his first preschool. It was a wonderful experience. But, he was constantly sick and missed a good bit of it. He was diagnosed with Reactive Airway Disease which soon became Asthma. We were in and out of Emergency Rooms and doctors offices. His list of medications was exorbitant. But at 2 years of age, he was showing signs of extreme intelligence. He knew all his colors. He knew shapes, such as Octagon and Hexagon. And that's not because we, his parents, were pushing this stuff. He was so inquisitive - he had to know everything. So when we spoke to his doctors about his behaviors and somewhat delayed motor skills, we were "poo-poo'd" with things such as "But just listen to his vocabulary" and "He's on so many medications"....

In 2003 we decided it was time to find out why the "Terrible Twos" came on at 12 months and still hadn't left at age 3. He was starting to have extreme behaviors and could almost never sit still. He was chewing on things, despite being way too old to teethe. Most of his board books were devoured. He was jumping and jumping and jumping where ever he was. Even one time his jumping landed him at the ER with a goose-egg on his head and a nice scar when he slipped and hit his head on the way down.

The developmental pediatrician we saw also did not pick up on his diagnosis. She felt that, if anything, he was showing signs of giftedness and perhaps ADHD. But she was loathe at the time to diagnosis him with anything. However, she sent us to a family therapist, who picked up on his Sensory difficulties.

From there, we started Occupational Therapy and soon after Physical Therapy. It was at that office, I was introduced into the world of Autism Spectrum Disorders.

I began to see the similarities in the other children in the waiting room. While many of these children were not verbal, the behaviors were so familiar. One day, our son had such an explosive episode another Mom said to me, "Asperger's Syndrome"? And I said in a pleading voice, "I don't know".

That day, I got online and went to town on my research. Suddenly I had found it. Asperger's Syndrome. THAT was exactly our kid. I called up the Developmental Pediatrician who squeezed us in for a full Psychological Evaluation. We walked out with the diagnosis.

By this time, Preschool was well aware that we were trying to find answers. He, of course, was having behavioral issues there. But the teachers were really patient and understanding since they knew we were doing all we could. We were in the process of getting him some one on one supports when a new parent threatened to pull funds from the program if our son was allowed to continue there. I received a call that day from the teacher who was mortified. Her boss (an administrator who had never even met us) told her to call us and tell us we couldn't come back. I was sick.

We found another preschool, which was very accepting and accommodating. By this time, our local education system was getting him into an early intervention program. He continued in private preschool for three half days per week. He attended Early Intervention 2 days per week for a couple hours at a time. It was all going pretty well.

Enter the local school district.

In the Spring of 2004, we had a formal meeting to transition our son from Early Intervention to School Aged. At the time, we thought this was going to be our IEP meeting. Upon arrival, we were told that it was not an IEP meeting - but a transition meeting. We were given papers to sign him out of Early Intervention and a paper which stated our intention to enroll him in the district Kindergarten program. Assuming this was the process, we signed papers and went on our merry way.

In the summer of 2004, our local district offered us a summer school program that would allow him to become familiar with the Kindergarten rooms and school in general. We jumped at that chance knowing that familiarity was good. We couldn't have been more wrong. It was a horrendous disaster. The program was called "Success by Six" but it was really "Weed out by Six". The program was a sly way for administration to figure out which kids were going to be "problems". The goal was to break the wild ponies before fall. The summer teacher, who was a regular kindergarten teacher, was not allowing our son any accommodations. There was no tolerance for his quirks.

With the problems ensuing, I contacted the school district to find out about an IEP meeting. The district administrator told me that we didn't need any meetings - his Early Intervention IEP would carry through and we should "wait and see". BUT...she slipped and said he was not getting Physical Therapy. I hung up the phone and it dawned on me. I was very green on educational law. But I knew that they couldn't change the IEP without a meeting - which is what she insinuated had happened by removing PT.

I contacted our state's educational consult line first to find out if I was right. What I found out was MUCH more than I had expected. You see, that meeting where he was removed from Early Intervention was also supposed to be an IEP meeting for his school aged IEP. The school just ignored that and thus took him out of special education with no intention of ever telling us. I supposed they figured we'd be "none the wiser".

Talk about feeling bamboozled. BUT, we thought, okay...maybe they are just really screwed up and didn't KNOW what to do. We took the high road.

I formally called an IEP meeting in writing. Two weeks before the start of school, and IEP document was written. I was still fairly green, but had done enough research to make sure that we wrote something based on needs. Since there were no school evaluations done, I provided outside psychological reports, OT reports, you name it, I included it. I found a really nice document outline to give teachers about your child and customized it. I emailed and mailed copies to the team members in advance and had copies to give everyone at the meeting. The documents were never even so much as opened or glanced at.

Despite this, we walked out feeling pretty ok with things. Everyone seemed so nice. They assured us things would be great. Talk about being naive.

By the second week of school, the principal sent our son home for "behaviors". By the third week, he was threatening to expel our 5 year old. By week four, I was being told they were going to change his placement. I hired an advocate.

We found out that his IEP was not being followed because it was not a legal IEP. Our son never had a school evaluation to show a need so therefore, it was just a dummy document to shut us up. There was a plot to transfer our son out of the Autistic Support and into a emotionally disturbed classroom which was just full of problems.

Our Autism therapist (who works at a notorious Autism clinic) received a call from the school psychologist who attempted to persuade her into turning against us. The therapist questioned the school psych as to why they felt he wasn't on the spectrum. The school psychologist started rattling off behaviors that our Therapist advised were indeed indicative and quite common for Asperger's. The school psych, unhappy with that answer, said "We don't see it that way" and hung up on her. I was told this first hand by our therapist.

In the meantime, our son's anxiety was off the charts and he was becoming dark and withdrawn. He started talking about wanting to die. Finally, we had to have him admitted for his own safety.

We called the school to the plate. Do a Multidisciplinary evaluation and get this kid some supports. The school complied, although missed time lines. But in the meantime, his current teacher was really taking the high road and working with us, despite her administration. We also had a private one on one who made the rest of that year tolerable.

Summer was somewhat non eventful until two weeks before school start. We received a call that his one on one was taken off our case. The explanation was given that she wanted off. In the meantime, she and I had become close. I called her and she had no idea that they pulled her off the case. She put in a call and was told she'd lose her job if she pursued it. We soon figured out the school had "gotten" to our one on one's agency. He started first grade alone.

Within a few weeks, we found a new one on one via a new agency. It was going "okay" as far as we knew. By December, we had a different story. He came home with bruises from an Aide assisted by the Principal. We soon found out he had been put in seclusion and restrained while there in a very illegal prone restraint almost every day that year.

We pulled him out immediately, filed due process and enrolled him in Cyber School. He's been in Cyber for two years now and just flourishing. But in March of 2007 he had to do another inpatient stay due to depression.

It's been a ridiculous saga to get our child an education. But we've finally found a home with our Cyber Charter School. I've since learned what special education "should" look like. His school granted him extended year services this summer and sent him to an 8 week day camp to work on social skills. He made friends there. We are so thrilled.

That pretty much summarizes our story, leaving out a lot of gory details. I hope you take away something from it. Amy C.

No WIRE Hangers!

And not because I work hard to buy those beautiful plastic jobs at Wal-Mart, but because they leave icky wrinkles on your pants...

I could not think of a better way to start off this blog than to bring up Mommy Dearest, aka Joan Crawford (played here by Faye Dunaway).

Why you may ask? Because years ago Autism was once blamed on Refrigerator Mothers (emotionally frigid) such as the mother portrayed here. Things have changed dramatically since then. Autism is now recognized as a neurological disorder by the world. And while the various causes remain controversial, it has been established that Mother's have nothing to do with it.

But I didn't just quote Mommy Dearest to focus on the past. There's a method to my madness.

Enter the 21st century. The increase of Autism Spectrum diagnoses is at an all time high. So are the instances of other neurological and mental health disorders. And well, in general, medicine is getting better at recognizing the signs. However, much of society in effort to ignore the issues, often likes to point blame back at good ol' Ma.

Recent public statements like that of a Radio Talkshow Host telling the public that most Autism cases are complete frauds - the kids just need a good old fashioned whipping, are what we hear. People like this get us all fired up. But folks, that's not the what we should be fired up about.

Better we should be concerned that this mentality is lurking behind closed (school, church, kids clubs) doors everywhere. And it lurks so silently that many of us don't know it exists until it's too late. It lurks at the administrative level at public schools. It lurks in the minds of church congregations. And it lurks right next door to you.

That truly is scary. Because ignorance breeds misinformation. And misinformation spreads so much faster than any good information ever could (just look at how fast Hollywood rumors propagate).

Parenting a child with special needs is no easy task. And while that in itself can be challenging, it's nowhere near as difficult as raising a child in a society who thinks that YOU (Ma and Pa both this time) are the only reason your child behaves differently.

Well, at least I'm no refrigerator mom...Now I'm just a plain old bad parent.