How We Protect Our Son With Down Syndrome From Sexual Abuse

I was sexually abused as a young child. The trauma is a double wound — one for the actual assaults and another for growing up in an environment where I felt safer living with abuse than voicing my terror to others. As a mother to a 7-year-old boy, one of my driving motivations is to prevent victimhood from becoming a family tradition.

Before Bobby was born, I did my research about the most effective ways to keep him protected. My partner and I agreed to be vigilant about his inner circle. We knew predators look for children on the fringes of a social circle, the little ones who have no one to tell their secrets to. We were determined to nurture a strong, self-confident voice in our child, a voice that would make him an unappealing victim.

Then Bobby was born with Down syndrome. None of the advice on keeping a child safe accounts for a largely nonverbal child who relies on adult help for things like going to the bathroom. How do you differentiate between a “good touch” and “bad touch” for a child who needs help wiping himself?

When he’s older, we’ll have options for empowering him to choose healthy physical interactions. But for now, his safety is primarily up to us. His circumstance may increase the likelihood of abuse, yet we don’t want that fact to limit his ability to experience the world. So we have developed our own philosophy of vigilance.

1. Having a voice doesn’t require language.

We give Bobby a good deal of control over who touches his body. For instance, physical affection is completely voluntary.

However, we can’t allow him to dictate whether he will cooperate with medical interventions. He has had several major surgeries and sees multiple specialists. He hates it all. Last time he had to have his blood drawn, his top-of-his-lungs protest started in the waiting room. The phlebotomist’s face turned dark when she saw us. She was afraid she would have to fight to get the needle in, but she was surprised once we were in the lab. He continued his screaming but still held out his arm and let her take the sample.

As we left I smiled and told her, “Our family rule is that we cooperate with the doctor, but we don’t pretend we like it.”

I know some of the doctors and nurses we see would much prefer I hush him when he starts to scream. In the immediate term, I think his reaction allows him to release the stress of the situation. In the long term, it reinforces an important lesson: Scream as loud as you can if you don’t want someone touching your body.

2. Be that parent.

When he was younger, Bobby came home one afternoon with a bruise. He wasn’t seriously hurt, and my initial reaction was to let it go. My partner’s reaction was to call his teacher on her cellphone and demand an explanation.

I was embarrassed at first, not wanting a teacher I respected to feel accused. But then I remembered that my own sexual abuse had gone on for years precisely because the adults around me didn’t want to make waves.

So I follow my partner’s lead. We don’t spew accusations, but we demand explanations. We aren’t afraid to be a pain in the butt. The school staff knows it. More importantly, any would-be predator lurking in the school knows that, at the slightest provocation, we will show up and start asking questions.

This reputation is one that’s easily earned. We don’t need to intervene every day or even every month. But when we do ask questions, it’s with enough force to leave an impression.

3. Trust your instincts.

My partner is a former child abuse investigator. She can spot an abuser and a dangerous situation. I’m a victim of child abuse. I know the soulless eyes of a predator. My son is a child whose instincts have not been polluted by social niceties. We can’t identify everyone, but if my partner or I have a bad feeling or Bobby reacts negatively to an adult, we honor that.

Innocent until proven guilty is only a stance for a court of law. If someone makes you feel squeamish, don’t talk yourself out of it.

4. Do your research.

Every person who has been alone with Bobby has been through a background check. It’s not a foolproof check, but it’s an easy process that eliminates obvious predators and sends a message to everyone else that we’re paying attention.

5. Remember where your loyalty lies.

I know some of the teachers and administrators we’ve dealt with over the years dislike our involvement. Bobby’s behavior at the doctor’s office isn’t universally understood or appreciated.

All in all, we’d be more popular if we stopped asking questions or if he sat in silence and submitted to medical procedures. But then, Bobby might become one of the children on the fringes.

There are tons of social mores designed to keep parents from asking too many questions. Even other parents collude when they make snotty remarks about someone being that parent or are afraid to smudge an adult’s reputation by asking questions.

My job is to keep my son safe. If that requires uncomfortable questions, then so be it. I don’t fling casual accusations at people. I’m not running to intervene in his life every second, but I’m always paying attention.

I don’t love this work. It’s all the harder because I know that even our best efforts can’t protect him completely. But I much prefer this approach to waiting helplessly, hoping that nothing bad will happen. Down syndrome or not, we are in the fight.

A version of this post originally appeared on Role Reboot.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.