This is the hardest post for me to share. Children with Autism have sensory and behavior issues. Sydney was beginning to use words in isolation and sign language to communicate. But the frustration of not being able to fully communicate resulted in aggressive behaviors. She would throw objects, kick, scream etc.
Due to her delay in speech screaming was her voice. There were days when she would scream all day. I never remember having the windows opened much. I felt like a prisoner trapped in my own home. Therapists came to observe her at home, because I knew I was doing something wrong. Sydney of course was the perfect angel.
Rob took Harrison to a family party and I remember sitting in her room cradling her as she screamed for hours. My critics would tell me I need to spank her and let her stay with them for a week and this wouldn’t be happening.
I started learning about sensory integration. We bought a swing for her room, weighted blankets, and sensory tools to help calm her down. I would later find out that before her seizures she would feel the electrical shocks in her brain and some of the violence was a result from that. One day she broke the blinds in her room, and tried hanging from the ceiling fan. Rob and I removed everything from her room for her safety.
It was a Saturday and Syd had four seizures. The neurologists told me to go directly to Ann Arbor. I got her in Robert’s truck, she didn’t look right. I just remember driving and praying. We were on M14(Michigan friends) and Syd had another seizure. Before I knew it she was out of her seatbelt and screaming and crying. Then I remembered Rob only had the child lock on one door and Sydney opened the door while I was driving.
I can’t remember how the door closed and how I made it over to the shoulder of the freeway. I put on my hazards and cried and prayed. I was confusing the words of The Our Father and Hail Mary. I couldn’t remember any scriptures so I just called out Jesus, Jesus, Jesus. God sent a state police officer who calmed us both down, called for assistance and escorted us to the ER.
By this time, I didn’t recognize Sydney. She was a combination of Damien Omen and the Exorcist. I know that is terrible to say. The nurse hugged me and turned me away while they gave Sydney a shot. She would sleep for the next several hours. When Rob arrived the doctors told us that because of her behaviors and seizure activity that she wouldn’t be coming home that day. We stayed with her for two nights while she had the video monitoring EEG, monitoring her seizures.
While in the hospital Sydney was still aggressive, having hallucinations and because of that the team of doctors decided to strip her of her meds and admitted her to the juvenile psychiatric ward for a week. Dumb me didn’t realize that I couldn’t stay with her. I was devastated. Did I mention that this was all happening in the September? My teacher friends can read between the lines.
We would drive to Ann Arbor everyday. I was torn about taking Harrison to visit her but he missed her so I gave it a try. When we got to the door Harrison said “this is pretty cool mom, they have cameras and a doorbell.” Bless his heart he thought Syd was in the VIP section.
That seemed like the longest week ever but the day she was discharged was the happiest day. The hallucinations were over. There wasn’t an added diagnosis of schizophrenia, which was my fear. I wouldn’t wish that experience on any family. I felt like a terrible mom. But if I didn’t rule everything out first, I would have felt worse. Only five people knew this story. Last year I had the courage to share it on Facebook during April.
My message is that sometimes you are in a storm that is so dark and so painful. But if you praise God during the storm and praise Him in advance. You’ll survive the storm. Sydney had a breakthrough and we were headed down a brighter road.
I can remember this day like it was yesterday. The faces of the doctors, the Michigan State Trooper, and the screams of Sydney. I kept this secret for a long time. When I tell you that you don’t know my story, I mean it. But look at us now.