I have gone to war, just like my husband. My war is not with a nameless faceless enemy in the some random country in the Middle East. When I come home there will be no fireworks, there will be no celebrations, and I will not get medals for my battle scars, and believe me there are many. I have gone to war for my son. My enemy is the United States Department of Education and the parents that justify the Department of Education lackluster implementation of IDEA. This is part of the reason I closed down my account. I was tired of taking ego hits from a person, who has no vested interest in my child, questioning why I lobbied and got a person elected to superintendent. I got tired of the implication from both the county school system and other parents that it is my fault that my child had issues in the school. Let me give you a little bit of background of our life, and you decide– did Okaloosa County Schools fail, or did I.
I gave birth in 2004. My husband deployed 5 months after I had my son. The first time my husband deployed there was a major train accident in our neighborhood. My neighbor died. I’m considered 40% disabled by the VA, because the chemical that spilled could very well kill me later on. Right now, my doctor has said the ONLY thing keeping me from having major lung and sinus issues is my fitness level, marathon training has its benefits. But as soon as I’m not able to run anymore or participate in fitness activities, I could very well develop COP-D or Asthma. Needless to say, I was highly uncomfortable staying in Germany. I left for Minnesota for the duration of my husband’s deployment. Much to the consternation of nearly everyone I knew, but I also knew that my mental health depended on it. After my husband returned, we noticed odd things about my son. 1. He was easily placated. 2. He was really, really floppy. and 3. He didn’t have any interest in walking. But besides that he was developing normally. When we took him to his one year well child, things began to change. First he developed a 105 fever, had seizures, projectile vomiting, and other symptoms hours after getting his 12 month shots. He spent 4 days in a hospital in Amberg. He was diagnosed with global developmental delays, and the word autism was hidden in small print on the EFMP paperwork. That little word should have prevented the next two years, but it didn’t.
In 2005, I was pregnant, and we had moved to Minot, ND. I gave birth, and three months later, my son had his official diagnosis of autism. I had read up on everything about autism. Found out he needed ABA therapy, and found out that they didn’t have ABA therapy in Minot. I tried to get the Loovas Institute to come to Minot and teach parents how to do ABA therapy, but one of the younger enlisted spouses straight out told me that, because I’m a rich Major’s wife, I should pay for it (the cost of getting Loovas here– $50,000!). Instead, we opted to do a humanitarian assignment and get my son the therapy he needed. While waiting for the paperwork to go through, I went to every resource, every website, every place I could think of and I worked hard. I got my son to identify his colors, to identify letters, to identify numbers, and to talk. He would go to school until 2:00 PM and when he got home, I would work with him from 2:00-5:00 PM. Needless to say I had another daughter, but that didn’t matter. My daughter was raised in a therapists office, or me playing “do this” with my son.
When we moved to Virginia. My son went to a “do this” school. It was 90 minutes both ways to and from the school. He would go from 8:30-2:30 PM. I would drive him there, sometimes I would go to the gym, and workout, but I only got 90 minutes of childcare. My daughter and I would drive back, or go to the mall, or go explore Suffolk for 6 hours, then spend another 90 minutes driving home, and that’s only if traffic was good. I put 60,000 miles on my car in one year. Still when I got home, my son and I would “play do this.”
A little under two years, 22 months to be exact, we moved again to Ohio. He went to a school with a wonderful teacher, and aide. He did things I never expected. He read. He was invited to birthday parties with TYPICAL kids. He was accepted into his class. He was ready for the first grade. This was a short lived assignment. Fourteen months later, we got orders to Florida. I was excited. The area we were living, was rated as one of the best areas for education. It was a beautiful location, not too far from Disney World.
We faxed my son’s IEP, that important little document over. We were told they would write a new IEP after they evaluated my son in August. The document I faxed over, stated that he was to be mainstreamed 60% of the school day. I had a bad feeling when we first got there, and it was confirmed the week before school.
When we arrived I enrolled my son in school, I was told that he could not be sent to the same school as my daughter. I went to meet with the administration, and explained that he was having difficulty adjusting to this new location. The first thing that touched off a nerve was they didn’t want to show me his classroom. I didn’t meet his teacher either. I was assured that she would call me, as that’s what his teacher in OH did, call me. She never called me. I did not meet his teacher until the first day of school.
The first day of school, I left the school in tears. He was placed in a classroom with 8 other children with varying degrees of disability. I was told that he was not going to be mainstreamed, and that I would have to sign an IEP to make the placement legal. I refused. Two weeks later, he was accused of exposing himself and soliciting a sexual act with another student. Mind you, this is a 7 year old little boy, who would just as soon talk to a wall as to talk to another person. He doesn’t ask questions. This was far too sophisticated of an action for my son. We had a big conference with the teacher, and there I was informed that he was no longer allowed to wear shorts, they had to be belted, and he could not even change for gym. He screamed every day at gym and recess, because of the heat. Funny thing was, no other outside authorities were made aware of the accusations– not even the principle. You would think if a child who does not normally talk to other children solicited a blow job, someone would call the police and initiate an investigation. I begged for him to be allowed to change into shorts just for recess and gym, the answer was no. I asked if I could sit with him during those times, and play “do this”, answer was no. Two weeks later the incident happened.
A few days prior to the incident, my son had pink eye. He was constantly getting pink eye at that school (ironically he stopped getting pink eye once we pulled him). I sent him to school, it was very hot and humid. He screamed again during gym, and got himself so worked up, he banged his head against the desk 14 times. I had signed a waiver allowing the teacher to place him in a hold. The teacher never put him in a hold. At the end of the head banging incident, he screamed and held his eyes, he said he could not see. When I picked him up, I was told of the incident. I asked if he was sent to the nurse, the answer was no, and I was told that it was “because he had pink eye and was trying to get out of doing something. It was an act.” I called my doctor. The doctor told me that pink eye would not cause a child to bang his head against a desk 14 times, and to take him to the ER. The doctor we saw at the ER, examined him, and determined that when he banged his eye, he hit his cornea temporarily blinding him. The ER doctor was so upset that he wrote a DHS report and sent it to the sheriff’s office. The sheriff’s office “lost” the DHS report. The teacher is still employed there.
I pulled him from school two weeks later. I was not able to get him into a private placement until much later, so we still sent him to public school, even though it went against every fiber of my being. I kept him home any day he had an “autism day,” and by December, we opted to homeschool him until a spot came open at his new school in January.
In OH and FL (at the start), we did “do this” after school every day. Now, I do what I can at home after school, because his schooling is so intense, I would like for him to be able to be a child. This is the first time since he has been diagnosed that I have not done some kind of supplementation after school. My mom and dad are moving in, and my mom is going to make it her mission to get him reading. With the exception of a nine month school year, from the day he was diagnosed to now, my son has received hours and hours of supplemental school work after school– whether it was by me, a trained therapist, or my mom. Yet parents and administrators still say that I have not done enough, and that I’m asking too much.
What exactly am I asking for? I’m asking for my son to get a similar education as other children his age. I’m asking that he not be written off. I’m asking that he be taught the basics– reading, writing, and simple math, so that he can at least be independent. That he can fulfill whatever destiny he has in this world. I know that his destiny is not to live with me forever, I know his destiny is something more. I know that he deserves something more than what he has gotten. I know that I deserve more credit than I have gotten. Sure there are some special needs parents who want their children to receive the best of the best, but I also know that’s not what I want. I just want my son to get something fair. Stuffing him in a band room with 8 other children with varying degrees of disability, not allowing him near typical children, and then when he doesn’t perform, blaming me, is not fair. It’s not appropriate, and it’s not education. And as a parent of a gifted child, I’m more than willing to pay whatever extra to go above and beyond for my daughter, I just want my son to get the minimums.