Once upon a time, I had a job that gave me a paycheck. I worked as the child advocate at a crisis center where I provided education and support for children and families impacted by sexual abuse. I absolutely loved everything about it: giving awareness talks in the community, co facilitating equine therapy summer camps, and even helping teens prepare to testify against their abuser in court. It was intense meaningful work that would often shut down the polite, “What do you do?” party conversation in two seconds flat. Despite my Debbie Downer vibe at social gatherings, every now and then someone would find out what I did for a living and summon the courage to share their story with me. It was, and is, always a privilege to be invited to hear someone’s story of surviving trauma.
As you can imagine, I’ve been fairly diligent in teaching my kids about body boundaries and safety. But when we adopted our son with Down syndrome, I knew the prevention strategies I’d been implementing with my typical children just weren’t going to work for Ben. I also knew his risk of sexual abuse was much higher simply because he has a disability… but more on that in a minute. When Ben joined our family, we had so many immediate needs to address, such as forming a parent/child attachment and navigating some serious medical diagnoses, that I stored these concerns in the back of my mind.
Then, this past October, I had the privilege of participating in a retreat with some amazing moms of kids with Down syndrome. Here I was surrounded by some of the fiercest advocates and most incredible mamas I’d ever met, and they were telling me they had not seen any material or heard any conversations aimed specifically at preventing the sexual abuse of children with Down syndrome. Ugh. I admit I was really hoping they could just point me to someone already addressing the topic. That would have been much easier.
For months now, I’ve been poring over books and articles trying to figure out how to address the issue of sexual abuse in children with Down syndrome. While there is discussion and education surrounding sexuality in pre-teens and young adults with Down syndrome, I’ve found very limited conversation and information about the prevention of child sexual abuse. Statistics regarding the frequency of abuse in children with disabilities vary and researchers are quick to admit there are challenges and limitations in collecting accurate data. But researchers solidly agree that children with disabilities are at greater risk of experiencing sexual abuse. In a 2000 study of more than 4,500 maltreated children, Sullivan and Knutson found children with disabilities are 3.14 times more likely to be sexually abused than their non-disabled peers. Other studies suggest up to 10 times increased prevalence of abuse.
There are some general characteristics of young children with Down syndrome that put them particularly at risk:
- Limited verbal communication and vocabulary
- Heavy reliance on others for basic needs such as diapering and toileting
- Increased need for interventions (medical, therapeutic, etc.) can unintentionally teach compliance to authority figures
- Frequent separation from typically developing peer group
- Exposure to multiple adults and caregivers
- Lack of education in healthy body awareness, privacy and boundaries
- Strong desire for attention = vulnerability to manipulation
- The societal expectation that children with Down syndrome are friendly and loving to all people, even strangers
There are some wonderful organizations out there already addressing the topic of child sexual abuse, but there is a clear lack of information tailored to the needs of our extra special families. I firmly believe parents and adults in the Down syndrome community have the ability to change the sexual abuse statistics for our children. Yes, our children have unique risks, but they are also surrounded by a unique community who shouts their worth from the rooftops.
My hope is to use this space to candidly address a difficult topic and share my thoughts on prevention strategies. I want us to set a foundation that will keep our kids safe now and promote a healthy adulthood in the future. Your input and feedback is so important – this has to be a much bigger discussion among parents, relatives, caregivers and professionals to truly change the statistics. One thing I know for sure, our kids are 100% worth the conversation.