‘Beth, there’s police at your house. Are you ok?’ I found my son handcuffed to a hospital bed, drugged.’: Mom advocates for son with severe autism, PANDAS, ‘Don’t ever give up on your child’

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“I sat in a little room in the back of a pregnancy resource center while I waited for the test result to show up. I remember feeling pretty numb. The lady was talking to me, but I had tuned her out. It was like everything around me was blurry and distorted. I was just two months passed my sixteenth birthday and the situation I found myself in did not feel real. After two minutes, the volunteer removed the paper towel which was covering my test. There it was, plain as day. Positive. I was pregnant.

My mother was sitting in the waiting room. She took one look at me and said, ‘I knew it.’ She was not disappointed as one would assume a mother would be upon finding out her teenage daughter was pregnant. Not my mother. She wore a smile from ear to ear. Looking back, I am not sure she was smiling out of pride or at the fact that she was right. She grabbed her cell phone and called the father. After hanging up, she told me that his first question was, ‘How do I know it’s mine?’ At this point, I was still processing that I was pregnant.

I spent my entire pregnancy in a series of unstable environments. My mother was a drug addict, her mood flopping from supportive to downright abusive. We moved from one town to another. By the time my son was born, we were completely homeless, spending each night wherever there was a spare couch.

My son, Evelio, was born in September 2007, nearly six weeks premature. The labor was long and intense. I remember pushing for close to three hours straight. He was born face-up, which was why I had such a hard time getting him out. They immediately took him to the NICU. I remember his head being covered in purple and black bruises. I did not get to see him for another three hours after his birth. When I did, he had an IV in his head and was hooked up to multiple machines. He spent a week in the hospital after birth. I spent each day with him, holding him and promising him a better life, the best life I could provide.

Courtesy of Bethany Chavez

I had a feeling from an early age that something was not quite right with my boy. From around 2 months, I remember holding him and staring into his eyes and getting the feeling that something was off. I could not explain it, and I did not dare voice this to anyone in fear of judgment. Around 10 months, I noticed Evelio would sit in his walker and stick his tongue out while rapidly swinging his head back and forth. I used to laugh and wonder why he did that. He also started flapping his hands constantly and laughing. He did not have much speech and was uninterested in other children. I rationalized these behaviors as telling people he was trying to fly.

It was around two and a half years, in the fall of 2009, that I could not ignore the peculiar behaviors Evelio was exhibiting any longer. My mother mentioned she thought he had Autism. I did a Google search and found an online screening tool called the MCHAT. There were a series of questions to answer about my son’s observed behaviors. With each ‘yes’ or ‘most of the time’ I clicked, the weight in the pit of my stomach grew heavier.

I hovered over the ‘finish’ button for a minute. I suddenly did not want to see the results. When I did click it, the results flashed in front of my eyes in bright red font: ‘High risk. See doctor soon.’ I did not know much about Autism at the time. After all, I was only 18 years old and was trying to figure out motherhood in general. The thought of parenting a special needs child had not truly crossed my mind. I made an appointment with a pediatrician. This first appointment with Evelio’s primary care physician set us on a road that I seriously underestimated. This appointment led to a referral for a full Autism evaluation that took place 7 months later.

Courtesy of Bethany Chavez

In June of 2010, Evelio had an eight-hour evaluation consisting of tests, observations, and parent interviews. At the end of the day, I sat across from five or six professionals. They each held clipboards in their hands. I sat on the edge of my chair, waiting. The lead physician on the team said, ‘We are diagnosing your son with Autism. He is functioning at a 9 to 13-month level.’ They continued speaking, but I felt as if I was falling through the floor. I felt hot tears running down my cheeks. One of the doctors said, ‘Well, you knew this was coming.’ This was true. I did expect to hear a diagnosis of Autism. But hearing it, seeing it in black and white, hit me like a ton of bricks. We left that day with a crisp blue folder, a checklist of what to do in the first 100 days of diagnosis.

Instances of aggression occurred early in Evelio’s life. Even prior to diagnosis, he frequently bit and scratched others when becoming frustrated. He would also bang his head into the floor repeatedly, even after his lips were busted and bloody. As he got a bit older, he would break and throw things across the room. These events occurred at home, in school, and in public. There were many times I’d leave a public place with bleeding scratches, disheveled hair, a screaming child, and the judgmental stares of others boring into me while I hurried to my car. I’d get him into his seat and close the door before collapsing against the steering wheel letting out loud sobs while he continued to scream and thrash in the backseat.

At the age of 4, Evelio was having multiple aggressive outbursts at school. Some might ask themselves what damage could a 4-year-old really do. I can tell you, a lot. It got to the point where the school and I agreed he needed intensive intervention. So, Evelio was admitted into his first inpatient placement in April of 2012 at the age of 4.

He spent five months at a residential treatment facility and came home that September. I remember being so overwhelmed with sadness and despair when he was gone. I’d sit for hours on his bed and cry into his pillow. When he came home, I was beyond happy. For the first few weeks back home, Evelio was different. His behavior was better. He was using the bathroom. He was calm. But, unfortunately, after about a month, Evelio showed significant signs of regression. He quickly reverted to being incontinent and aggressive behavior.

Courtesy of Bethany Chavez

The two years after his inpatient placement were a whirlwind of increasingly aggressive and OCD-like behaviors. It was also during this two-year time span that he was diagnosed with epilepsy, PANDAS, intellectual disability, and disruptive mood dysregulation disorders. One incident resulted in his teacher being sent to the hospital with injuries to her arm. Another incident occurred while shopping at Walmart. Evelio became agitated soon after entering the store. A little girl was walking by with her father. He was sitting in the seat of the cart and as she walked by, he grabbed her hair and yanked her backward. She began screaming. I grabbed Evelio’s hand and frantically apologized to the girl’s father as we rushed out of the store.

In 2014, two years after his first inpatient stay, we had an appointment with his psychologist. I took Evelio to this appointment, along with my daughter, aged 10 months, and two of my nephews, aged 16 months and 4 years. I was caring for my nephews at the time. During this appointment, Evelio became extremely agitated and kicked my 16-month-old nephew in the head. The other children were removed to another room and Evelio was taken to a separate room by a security guard and another staff member so I could finish his appointment.

The psychologist informed me she would have to make a report to CPS and recommended my nephews be placed in another household for their safety. In the next room, Evelio was being restrained by the guard and staff member. He bit the security guard’s arm, taking a chunk of flesh off, and leaving the guard bleeding. I was shaking as we left the office. The psychologist called to inform me the security guard would not be pressing charges on my then 6-year-old child. This incident resulted in Evelio’s second inpatient placement. He was admitted to the same residential treatment facility as before, this time for just a month.

From 2014 to 2016, Evelio’s behavior was out of control. In July of 2016, something awful happened. I was graduating with my bachelor’s degree in special education. It was a happy time. I was very proud of myself and looking forward to commencement which would be held in Salt Lake City, UT. My husband and I had purchased our plane tickets months prior and were looking forward to the ceremony. We were flying out on a Friday and flying right back the very next day after the ceremony.

We had separate childcare arrangements for Evelio and our daughter. At the last minute, our childcare arrangement for Evelio fell through. My husband’s mother agreed to watch both of the kids since we were just going to be gone for one night. We checked in frequently with her and all seemed to be well. We talked to her around 4:30 on Saturday afternoon while boarding our connecting flight in Denver, CO. She said things were fine. We happily boarded the plane. Upon landing in Dallas, TX, my phone began alerting me of multiple missed calls, voicemails, texts, and Facebook messages. I opened the first Facebook message and I read, ‘Hey, Bethany, I just passed by your house and there were police and ambulances there. Are you okay?’ My heart sank.

Shortly after our last phone call with my mother-in-law, the wi-fi stopped working at the house. Evelio was unable to watch his Youtube videos. This caused him to fly into a raging meltdown. During this meltdown, he attacked my mother-in-law, biting her numerous times. She instructed my daughter, aged three at the time, to run and hide. My daughter ran to her room and tried to hide, but Evelio ran after her. He bit his little sister on her legs, arms, hands, and head. She had open, bleeding wounds all over her body. He also bit the lower third of her right ear, including cartilage, completely off. I learned that both of my kids were being treated at the hospital who had been trying to call me for hours. My phone had been on airplane mode while on the plane. My husband and I raced to Oklahoma as fast as we could.

Courtesy of Bethany Chavez

My daughter was released to go home with my mother-in-law. Child Protective Services had been called and my mother-in-law was instructed to leave before we arrived. I arrived in the hospital room to find my son handcuffed to the hospital bed with a social worker and a policeman nearby. He was drugged and sleeping. I won’t go into detail about the exchange with the social worker, but it was devastating. She had made her mind up that I was a neglectful parent who failed to protect my children. I was instructed that my son was not allowed to be around my daughter, and if I was caught with them together, I’d lose custody of my daughter permanently. I begged the hospital not to discharge my son, to find a placement for him. He clearly was not safe to be at home after this incident. The doctor stated, ‘It’s not my problem. He’s a minor and you’re responsible for him,’ and sent us on our way with no supports or help.

Child Protective Services quickly closed our case, saying we were not guilty of neglect. During this time, we were not allowed to have our children together. My daughter was forced to live with her grandmother for five months and we were allowed visitation. CPS agreed that my son was not safe to be at home but could not do anything to help. The day after the incident, we drove Evelio to the children’s hospital where he was admitted. The social worker suggested my husband and I separate so our daughter could stay with him and my son with me. This way, she would not get hurt again. This was absolutely absurd to me. I asked them about my safety. She responded, ‘We are only concerned with the safety of the children.’

Meanwhile, Evelio had been admitted to the children’s hospital for about five weeks. At the request of his state insurance, Soonercare, he had been given two psychological evaluations and denied local outpatient services. These were requirements that must be met prior to consideration for an inpatient stay. The residential treatment center at which he was placed before had since closed due to budget cuts and declining quality of care. The result was the consideration of out-of-state placement. However, even after meeting all Soonercare’s requirements, he was denied placement. They refused to fund a placement. The children’s hospital could no longer keep him, and we were told he would be discharged home.

I was devastated. I cried and screamed and begged the doctors to help us. I fell to my knees on the floor and sobbed. I was terrified to take him home with no supports. During his five-week stay, he had attacked several nurses and doctors, spent time in restraints, and was given multiple IV drugs to sedate him. This was the lowest point in our lives. I seriously considered relinquishing Evelio to the custody of the state. I realize how callous and cold that sounds, but I did not know what else to do. I knew if he was in state custody, they would be forced to place him. When speaking to CPS about this, I was threatened with charges of abandonment and jail time. I asked the supervisor on our case what he would do if I called them and just told them to come and get him. He told me, with a nervous chuckle, ‘I’d probably not come to get him.’ I was in complete anguish.

We were discharged home at the end of August 2016. Again, we were left with no supports. We were finally able to bring our daughter home, but the fear of a repeat incident loomed over our heads. Evelio was attacking me multiple times daily. I went to work in long sleeves to cover my bruises and scabs. I felt like a battered wife, except it was my child. My child who was out of control of himself, of his body, of his actions. My child who, after a rage, would cry and kiss me, looking at me with big, sad eyes, begging me to ‘fix it.’ I wasn’t mad at him. I was completely broken.

Courtesy of Bethany Chavez

I stopped taking my son anywhere. We stayed at home where he was most comfortable. I always made sure to have his favorite snacks available to avoid meltdowns. I put myself between him and my daughter so that she wouldn’t get hurt anymore. My daughter would freeze up when Evelio showed signs of agitation. She would shake and back into a corner while screaming, ‘I want to leave. He’s gonna get me. I want my daddy. Mama, save me.’ I did my best to comfort her and assure her I would keep her safe while my son kicked me in the face and raked his nails down my arms. I allowed her to spend the night with her grandmother whenever she wanted so that she would be safe.

In June 2017, Evelio went into yet another rage. He got angry when we ran out of Goldfish. I locked my daughter in her room and tried to keep him from getting down the hall. He bit my arms, hands, and chest, drawing blood with each bite. I did my best to shield the sensitive parts of my body and begged him to stop. It was too late to reason with him. He was not him. I fell beside the couch and he stomped on my back and my head repeatedly. I managed to grab my phone and dial 911. When the police arrived, they surveyed the scene and asked if I was okay. I clearly was not okay. My 8-year-old son had just beat me and destroyed the house. The police could not do anything but agreed to file a report. At that point, I decided that Soonercare was not going to deny treatment for my son when he so desperately needed it.

Courtesy of Bethany Chavez

From that day on, I called Soonercare after every incident, sometimes upwards of five times per day. I was going to be the squeaky wheel that gets the oil. I called and emailed state senators, appealed to the media, and made Facebook videos. While the media was disinterested, some educators who were in the capital shared my Facebook videos with senators. I documented the time, duration, and events of every outburst that happened. When school started, I instructed them to do the same. Sometimes I got through to someone and others, I was sent to voicemail.

Mid-August 2017 brought with it a crucial contact. I was put in contact with my state representative. He took a special interest in our case and advocated for services with the head of Soonercare at the capitol. I remember one phone call when he relayed to me, ‘I told them that if we couldn’t come up with something, I was going to come down there and pick Evelio and his mom up and we’d come back up here. I told them I’d lock us all in a room here at the capitol building and no one would leave until something was done.’ Up until that point, we had had no support from anyone who could make a difference. This felt like a game-changer. And it was.

In late August 2017, my son was suspended from school for assault and battery. He had attacked three teachers and was so escalated, they had to call the police. I called the state representative and screamed through my tears. I told him I couldn’t do this anymore. I told him I was at my breaking point. He assured me that he was going to make something happen. Within two days, I received a call from Soonercare that Evelio had been approved for admission to a residential treatment facility in New Mexico. This was the closest facility to us that had an immediate bed.

Evelio was admitted to the treatment facility on September 1st, 2017. He spent a full year there, making many gains. During his stay, my husband and I decided that we could not stay in Oklahoma anymore. There were no supports or hope there. We decided to move to Arizona, my husband’s home state, where we would have family support and access to actual services for Evelio. While the move caused a premature discharge from the residential treatment facility as a result of him losing Soonercare, it was the best decision for our family. He was discharged on August 31st, 2018.

Evelio spent about two months in our home in Arizona before being admitted to a hospital for an aggressive outburst. After a month of waiting in a Tucson hospital, he was admitted to a behavior health hospital in Tempe. He remained in the hospital for five months. His support team which consists of us, a DDD support coordinator, and his behavioral health coordinator, decided that an out-of-home placement was most appropriate for Evelio. In April 2019, Evelio moved into a temporary group home and in October 2019, Evelio moved into his permanent group home.

Since being in his group home, Evelio has started at a private school that specializes in working alongside students with behavioral issues and Autism. He has one-on-one staffing within the group home. He will be starting in-home services through an ABA provider soon as well. He is doing well. Though he still has aggressive outbursts, he is in a more structured and safer environment than when he was at home. These supports and services would not have been possible in our home. We would still be in the same boat we were in before.

I wish more than anything that my son could live at home, but I have made peace with the fact that it is not currently possible. Our time spent together now is loving, happy, and positive. He has adjusted well to his home, which is just an hour and a half away. He always greets me with a smile on his face and wraps me in a huge hug. He no longer hits me, bites me, or scratches me. Our time together consists of snuggling, playing, laughing, and love. I wouldn’t have it any other way.

I know there are other families out there who have or are currently experiencing severe autism. I know of families right now who are facing the same situation as we did in 2016. My advice to them – don’t give up. Don’t worry about feeling like a burden or a bother. Make your voice heard. Ignore the doubters and those who pass you along with a pat on the back and an ‘I’m sorry.’ Keep going until someone, somewhere does something. Also, know that for just as many people who judge you, there is a tribe out there who understands you completely. Find your tribe. If you have trouble, start with me. If nothing else, I will be a shoulder to cry on and an ally in your fight.”

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Courtesy of Bethany Chavez

This story was submitted to Love What Matters by Bethany Chavez. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories. 

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