Hello, Ladies. Happy Mom Monday! We are now beginning week four of the quarantine. I hope this blog finds you well. I have been laughing with you these last few weeks. This week I want to talk about something a little more serious. With this quarantine, I am sure that some of you have noticed our special children are getting a little restless. So, this week, I am going to talk about one of the most painful choices that we, as moms of these amazing children, sometimes have to make. I want you to know if you have ever had to make the impossible choice, YOU ARE NOT ALONE! Autism presents differently with every single person that has it. Not every child is going to be aggressive the way Jonathan has been in the past. It could be something completely different. No matter what it is or the severity, you do not have to face it alone the way I did. In truth, I did not even need to face it alone. Had I opened up to my family or friends, I would have had a fantastic support system. However, my fear and ignorance about Autism Spectrum Disorder combined with the social stigma, made me feel like I had to go through this intensely painful process alone. When I finally told my family, we all did research and learned more about Jonathan’s condition. We speak about it openly now, whereas before, it was like we were trying to ignore a dinosaur that had taken up residence in our home.
This week has been an absolute mess for Jonathan day after day; he has been one meltdown after another. Keeping him from breaking things and hurting himself has been a fulltime job. I have not been able to do anything else. The schools are still getting settled into a homeschool system. Jonathan was a good sport for the first two weeks, but now ending week three. He and I were both getting lost in the school’s homeschooling learning curve. The interruption of Jonathan’s schedule and the isolation from his friends at school was more than he could bear. I was on day five of Jonathan’s screaming, crying, and rocking, I was exhausted. It was under control until Jonathan stopped trying to fight David and start trying to harm himself. He was trying to slam himself against the wall and the door. I put my body between the wall and him to prevent him from banging his head against the wall. I put my arms around him and hugged him while he screamed until he fell asleep. Once he fell asleep, his self-harming forced me to make a decision no mother should have to make; I called the Los Angeles Crisis team to come and stabilize Jonathan. I was told it would be a long wait and if it turns into a life-threatening emergency to call 9-1-1. As far as I was concerned, this was the nuclear option. Because of my experience in Connecticut, I swore I would always take care of him myself no matter how hard things got. However, as his mother, I know that I have to recognize when that is no longer what is best for him.
I wish I could say this was the first time I have had to do this, but I have been at this juncture twice before. I could not help but remember the first time I committed Jonathan almost three years ago. Jonathan was newly diagnosed, Carmen was still a toddler, and we did not know too much about his condition. I felt like I was just given his diagnosis with no resources. A medical professional told me that he would never be able to speak or function independently. He even said to me that I should be prepared to care for Jonathan well into his adulthood; that I should make provisions for someone to care for him in my will. I had many questions, but the doctors had no answers. There was much misinformation on the internet. Everything from “stress during pregnancy causes Autism” to “vaccines cause Autism.” (The latter assertion makes my blood boil. To be clear, I do not believe for a second that either stress or vaccinations cause Autism.)
His classmates were bullying him at school, and I did not know it at the time, because Jonathan is only limitedly verbal. That night, I brought Carmen to see her dad; we waited in the car while he unloaded her. Once they were safely inside. I did my usual seatbelt check and made my way home. David was in the front seat, pestering Jonathan. Anyone who is not an only child knows that this behavior is par for the course for most siblings. Despite my admonishments, David continued to bother Jonathan. Because Jonathan became overwhelmed, he held David down by his seatbelt and began to hit him. This fight was not a typical children’s fight. The way he beat David was brutal and chilling. David’s blood-curdling scream sent chills down my spine. My heart leaped into my throat. To this day, the memory of it makes my hair stand on end. I pulled over immediately to break it up. I did not understand what was happening to my sweet, beautiful eight-year-old boy. I had never seen my baby exhibit such aggression. My heart was breaking inside of me because I wanted to protect my oldest son, and I yearned to understand my youngest son. It felt like I could not do both at the same time.
I was afraid that if I reached out for help, that my children would end up in foster care, or a judge would put Jonathan in an institution. I did not feel like I could confide in my neighbors and friends, nor could I disclose this unnerving change in my son to my family. In my mind, they would never understand. They lived 3000 miles away from me. I wondered if my poor parenting skills had brought us to this point. Was my son violent because I was not giving him something he needed? Did I do something wrong? I could never tell my parents that I failed their grandchild in such a catastrophic way. How could I tell them? I could not even bring myself to ask them if there was a history of Autism in our family. That is not something you just come out and ask someone, not even your own family. The unfortunate truth is amongst minorities, Autism, and mental illness are considered taboo topics. If our loved ones suffer, we say nothing because our community enculturates us to pretend that mental illness and Autism do not exist. Even more so, in my case, because at the time, I lived in a predominantly Hispanic community, in which these issues just were not spoken of out loud. At that moment, I was utterly alone and feeling the stigma of shame and guilt, as if Jonathan's condition was somehow my failure as a parent.
“The pervasiveness of mental illness stigma is often higher in ethnic minority and religious communities. This is mainly because of the stereotypical views about mental illness in general, the double stigma that these communities already face because of their group affiliation, and the cultural tendencies that associate shame with seeking mental health services.” Rutgers
We rode home in silence. While everyone made it to bed without incident, I could not shake the anxiety. That morning I woke up and found Jonathan smearing, but he was not smearing feces, he was smearing blood. He had smeared blood on the walls in his room. The blood came from his arms that he had picked raw, and his nose that Jonathan picked until blood flowed out. He had plucked his hair out until he had a golf ball-sized bald spot on the left side of his head. I was without words; my whole body was shaking. I did not know what to do or think. My body went on autopilot. I picked him up and took him straight to the bathroom. As I frantically searched for the first aid kit, I kept asking him, "why did you do this, honey? We don't do this, doesn't it hurt? No, don't touch it, baby, Mommy will patch you up." I gave him a bath and cleaned his wounds. Then I called his pediatrician's office. I was advised to call the crisis unit. Once I called the crisis unit, I was instructed to take him straight to the Emergency Room. I waited and weighed my options. What if they took Jonathan away from me? I looked at the bandages on his arms, the blood on his walls, and I decided that staying there with me was not what was best for him; he needed help. I needed the information. I called Carmen's Godfather to watch David. As soon as he arrived, Jonathan and I left.
I went with Jonathan to the Emergency Room at Yale-New Haven Hospital alone. We waited to be seen. He kept saying, "Mommy, where we? Mommy, where we?" I answered the same question for what felt like an eternity. The children's emergency room was crowded that day. We were sitting in the only remaining seats next to the automatic glass doors. I heard swish! The cold air chilled us, then the door closed, and then heat blasted us in the face. It went on that way for a good hour or so before Jonathan started screaming and hitting me. The people in the waiting room stared at us with disapproval. I heard one lady say
"couldn't be my child, I'd whoop his ass."
The nurses intervened and took us to triage. He was examined, committed, and medicated at Winchester One Child Psychiatric Inpatient Unit. The walk from the ER to the Psych unit was freezing. It was the middle of November, just before Thanksgiving. I kept fussing at Jonathan to keep his jacket zipped. We arrived at Winchester One through the service stairs. The stairwell was dark except for the light from the one door window leading into Winchester One's reception. When we got close to the door, I noticed it was covered with animated cartoon characters from Winnie the Pooh. I knew it was meant to be a comfort to the children as they came into the unit, but on that evening, their happy faces seemed to be mocking me. Security opened the door, and we stepped into the reception. Two nurses came out of light blue double doors leading into the unit itself. I remember the sound of the double doors buzzing to open, and letting go of my son. He just kept saying, "wait. Mommy? Wait. Mommy?" I was strong through the entire situation, but when I saw those soft blue double doors close, then I heard the soft click of the door's electronic lock, I broke down right on the lobby floor. I was on my knees, curled up, sobbing on the floor. The ER nurse that escorted us there picked me up and hugged me . She whispered, “My grandson is like your son I’ll give you the resources I have.”
This random act of kindness was small comfort for which I am forever grateful. As I continued my journey of educating myself, I remember that small act and pay it forward in everything I do. I built my brand and my company on the idea that we are not just moms, we are a community. That fear, frustration, and shame that you feel in the darkness of your bedroom and share with no one; we feel them too. I wanted to stop the stigma. It was my deepest desire to change the idea that Autism and mental illness are taboo, so I used my blog to start a conversation.
I have never been able to forgive myself for the fact that my son spent Thanksgiving of 2017 in an inpatient child psychiatric unit. I know it was the right thing to do with the limited amount of information that I had, but it just never felt right. Jonathan came out of the hospital heavily medicated. It was a long journey to get him back to himself. The move to California closer to his grandparents helped. Since the move, my son has come out of his shell, he is more verbal, and he has friends. This recent regression was hard for me to watch and accept. When I called the Los Angeles crisis unit, I was feeling all those feelings of fear, guilt and shame again. I was pleasantly surprised this time my experience was different. They never showed up to assess him, but I did get a phone call in the morning. I told them he calmed down. I thought that would be the end of it until next time. This time the woman on the phone gave me other resources. She was very informative. True to form, she was a mother of an autistic child who was also struggling during the quarantine. I guess the take away is, talk about it, ladies. This is the year 2020; it is not taboo anymore. We can help each other because we are not just moms, we are a community and a support system. We do not have to go through this alone.
Thank you for joining me on this beautiful Mom Monday. Join us every Monday for Mom Monday. Join us this Wednesday. We have a guest blogger posting about how to start a virtual business. Subscribe to be notified when we post, and get the latest news. Click below to donate to Autism Speaks. As always ladies, you are doing fine.