We are a blended family with 7 children. We have 5 autistic children, 1 child with other diagnoses and a 1 year old. We believe in a world where people with disabilities can succeed and have a full life. We believe in equality and what is right. These beliefs are being shattered by a school district.
Our story begins 3 years ago when our 6th child was born. The changes caused our then 7 year old autistic child to experience anxiety and frustration. He began biting his hands as a way to cope. We documented each bite and the school was aware. We implemented in home services and within 2 months the biting stopped. We thought this was the end of the story but we would later realize that it was only the beginning.
Fast forward 3 years, our 3 year old autistic son starts preschool in the same school as our now 10 year old. A week and a half into school we received an email saying that he had been scratched by another child on the playground. No big deal, kids will be kids.
Two weeks later our sons got off the bus. I asked my older son if he had seen his younger brother in school. He put his head down, said no and ran in the opposite direction. I thought it was odd but I didn’t push. He came back a few minutes later and said “I saw him in the nurse’s office”. We questioned why and his response was “to look at our bodies” the entire time he smacked his body and cried. We didn’t push and comforted him the best we could.
Meanwhile, I called and left the nurse a message. That night she called me back. I asked why my children were in her office and why was she looking at their bodies. She said she did it every day to them. Her reason for them being together during this process? My younger son wouldn’t comply. He cried and tried to run so they brought his older brother in to coerce him into compliance. She said it was “protocol”. I asked where the protocol was and she just kept repeating that it was protocol. I asked to see the written protocol. She replied with “it isn’t written”. I informed her that this was against my beliefs on bodily autonomy. She told me that she didn’t need my permission and didn’t need to tell me that it was being done. I informed her that she was grooming my children for a predator. She became angry. She said she had been doing it to my older son for 3 years and it was done twice a day. Wait? Did you just say 3 years? Twice a day? For 3 years you’ve been searching my child’s body without my permission or knowledge? How long did it happen to my younger son? Every day for almost 4 weeks. Years and weeks of violating their rights and privacy. I couldn’t wrap my mind around it. I just couldn’t. I informed her that my children wouldn’t be returning to school until I had answers. I hung up and started my email trail.
The next day my older son finally told his story. He was brought to the nurse with his younger brother. His younger brother was given marshmallows as a reinforcer when he complied. The same marshmallows I had bought and provided to his teacher. Their arms, back, belly and legs were searched.
Many emails and phone calls started. I wanted to know what happened to my boys. I wanted to know why when I reported my younger son’s regression was I told it was normal but you left out that his boundaries were pushed to the limit. What happened? I asked for an emergency IEP meeting.
The morning of the meeting my anger was boiling over. The director of special services was out on medical leave so the superintendent came to the meeting. Before anyone could say a word, I asked for a copy of the written protocol. No answer. They started reading off my son’s skills. I asked again. “There is no written protocol” and my response was “then what you did is illegal”. Next I asked for documentation of the visits to the nurse. I received an envelope that was 4 inches thick. Pictures of a naked man with my children’s names were placed in front of me. I was nauseous. My babies were on a picture of an anatomically correct male and they even marked things seen in places covered by their diapers. What was going on? I asked the nurse why. She said she was following “orders” handed down by a director that had retired 4 months before my 3 year old started school. Where’s the email confirmation of these orders? There was none. I asked if this was done to other children. The response was “yes”. I asked if their parents knew. There was no answer. I tried so hard to keep my composure as I stared at my 3 year old’s name on the naked picture of an adult man. I tried but then the principal joined our meeting. I asked her if she knew about the body searches and she said she did. I asked if this was done to “normal” children and she became offended by the word “normal”. I informed her that we stopped being politically correct when my children were body searched like they were carrying guns. I asked if the non special education parents were notified of body searches. She said they were. Wait? What? You search the bodies of disabled children who can’t tell their parents but if a child can tell then you call their parents? That’s discrimination, abuse and illegal. I was in the twilight zone and I couldn’t escape. I demanded an out of district placement and left. I would not leave my nonverbal child in a place of danger where he was learning to show his body for treats.
I went home and called the police and filed an internal abuse report. The principal spoke to the police and said that we had agreed to body searches but couldn’t provide documentation. The internal abuse investigator came out and talked to our children. He said that if there was no written policy then it was clearly illegal but his investigation could take 90 days.
That night I sat with those records from the nurse and went through them 1 by 1. I found the names of other autistic children on the papers, crossed out to make room for my children’s names. I cried. This was happening to all these children. I looked at the one name crossed out. I went to school with his mother. I cried more. I had to do something. I formally requested another IEP meeting for an out of district placement due to my children’s rights being violated.
We implemented in home services for our boys to teach bodily autonomy and address the behaviors that have come from being violated. My older son makes drawings of the nurse in therapy then draws an X through her. Internally he feels violated but he can’t express it. This is what happens when disabled children are abused. People think that because they have a disability that they can’t possibly understand. They do and now he will deal with the lasting effects this caused. My younger son has regressed. It’s a fight to change his diaper and bathe him. He isn’t the same carefree child that he was.
The next meeting didn’t go well either. We were given no options. Either we return to the exact placement we had or we go to a classroom that wouldn’t fit our child’s needs. That’s it. Those are our options. We were told that the ADA and Civil Rights laws are interpretive. We were told that our children and ourselves have no power over their bodies.
Our story isn’t over. We are filing for mediation and ready for due process. We will be suing for our children’s Civil Rights. We will get out of our district. We have to. The truth is that we will never win. In 10, 20, 30 years if someone takes advantage of our boys or inappropriately touches them we will be brought back to this moment. We will blame it on the nurse and the staff who helped her or had knowledge of it. We will always remember and I’m sure the boys will too. People with disabilities are frequently taken advantage of but I didn’t think it would happen to us.
Think about it….for 3 years your child is put in a disgusting position. They can’t tell you so behaviors start to pop up. You see the behaviors but you don’t know where they’re coming from. Then one day you find out that the people you trusted, the people paid to protect them are abusing them. I blame myself every day for not knowing more, for not walking into that classroom every day, for not being aware enough to know.
I ask you to make this stop. Stop the abuse of all the children in our school district, your school district and your friend’s school district. If we don’t stand together then we will have generations of traumatized, disabled children. Be their voice.