I was sitting on a bench inside a McDonald’s playground. I was probably staring into space either out of exhaustion or pure stress. My boys, who were 18 months apart, were 3 and 5 years old at the time. My youngest son never stopped moving.
He never stopped going, running, or climbing on things. He climbed on top of tables and counters. Sometimes I would find him inside dresser drawers and climbing out windows. He never stopped. I found solace at my local McDonald’s from the constant need to keep an eye on it and keep it safe. It seems we can never keep him safe.
Suddenly, a woman burst into me with a very angry face and shouted at the top of her voice: “I don’t know what’s wrong with you, because your eldest son is fine but the younger one keeps pushing my son.” . whats your problem?”
I stammered as I was startled by the false comment. “My son is disabled,” just fell out of my mouth.
She shouted louder: “So what, he should know human decency!”
He was only 3, and even though my angry inner voice was screaming that pushing was completely normal for a 3-year-old and no big deal, instead I felt extremely humiliated and my face got hot and I became uncomfortable. I quickly chased my children into the car and drove away. Ashamed. Heartbroken. angry. isolated. The experience will not be the last.
What I wanted to shout out was that my son was born very sick. He is missing part of his 15th chromosome. When he was 5 weeks old, he was shaken four separate times, suffered 15 broken bones, and nearly died. When he was 6 weeks old he went to nursery. At the age of 8 months, he moved to another nursing home. My husband and I adopted him when he was 15 months old. So please give him a great break because he is doing his best.
And…please give me a freaking break. I’m doing my best.
My son Dominic is now 13 years old. He is 5 feet 2 inches tall and weighs 115 pounds. Dom is someone who strikes up lively and open conversations with random strangers, a cheerful bug with a big smile and a stubborn sense of humor, but he is also violent and abusive.
His behavior, or what psychiatrists call “emotional dysregulation,” takes over our family. Everyone is constantly walking on eggshells. The slightest hint of frustration can set him off. If you ask him to wait, even for a minute, it may frustrate him. Sometimes, stopping it is just a matter of exhausting oneself. He still never sits down.
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Dominic calls me all the names you shouldn’t call your mother. Yes, he uses them all. Gives me the finger. He pokes me, intentionally bumps into me, punches me, kicks me, pinches me, spits on me, and urinates on me. He can be angered at any moment. His moods carry him up and down, sometimes all day long because he is unable to handle all the intense emotions. He breaks everything, including the things he loves most, from the same intense rush of feelings. He talks nonstop, craving every bit of your attention and rationality. He doesn’t play with toys.
Now is a good time to point out that our family has no support or comfort.
My husband and I plan every part of our lives knowing that Dominic will accompany us. There are no vacations and nights out. There are firm pressures, lots of hugs, and soothing techniques that sometimes work.
A few years ago, I was diagnosed with complex PTSD. I would soon be diagnosed with gastroparesis and then began experiencing chronic debilitating pain.
Currently, I live with anxiety and pain every moment of every day. I often wake up in the morning and immediately feel a huge weight on my shoulders pushing me down and speaking directly into my ear: I’m not good enough, this is all my fault, today will be the same. I often feel hopeless. There are many days when I can’t change out of my pajamas because living outside of Dominic’s is too stressful. Loud noises bother me. I am too exhausted or too sick from caring for Dominic to work or enjoy anything else.
Like a real abuser, a Dom suffers a cycle of abuse that begins with mere insults and can escalate into physical violence. This escalation can last for a few seconds or a few hours. When I can follow a routine of calming him down, he feels the remorse that an abuser feels in a cycle of abuse.
Dom becomes so sweet, so gentle, so comforting. It always gives me time to reboot and calm down. My house could have a moment to breathe. I can respond to an email without going into a rage and crying state. It also gives me time to forget. Forget the emotional pain and suffering it causes. I need to forget his violent abuse in the good moments because there is nowhere to go. He is my son and he needs me. It’s the only way I can survive.
I was counting on being rescued. I was, after all, a victim of my son’s disability, I told myself. I wanted to be saved. I was trying to be saved. I was begging to be saved. I needed salvation. But the only person who could save me was me.
I wanted a Savior who would sweep up and take care of my son, clean my house, pay my bills, and massage my feet. But this kind of redemption is short-lived because emotionally I am the same person. Pain, sadness, and depression will slowly recede into my life. I feel lost because I let myself get lost. I let the abuser in and let him abuse me. Guilt and remorse kept me from demanding what I needed in my life to save myself.
I needed to save myself.
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In my opinion, one of the tasks of every parent is to never give up on your child. I love him unconditionally, but he has a lot more challenges in life than most other kids. He realized that loving and raising him could be both painful and rewarding at the same time. I can feel the weight of emotions pulling me down, but I can still always see the sky. I’m broken and hurting, but that doesn’t have to define me in any way. I can still feel free.
I can heal. I want to heal. I’m trying to heal. I need to heal.
Right now, Dominic is going through an escalation cycle throughout the day and is struggling to stay calm. He is extremely exhausted, recovering from a cold, and has a low frustration point. This will never change, at least not in the foreseeable future. I need to change faster, but I accept that I have little control over how Dominic acts or how he handles his emotions.
I will never stop feeling the guilt, remorse, and intense stress of living with someone who is often “out of control” and “violent.” Right now, it’s day by day, moment by moment. This is our life. I can work on being more present, and I work on being more present, but my savings depend largely on me and what I can do to take the smallest steps to save my life.
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