As parents of children with disabilities, we sometimes have to learn lessons about our children the hard way. Sometimes that means realizing that what we are doing isn’t helping and isn’t working. This happened to my family when all the “experts” in my daughter’s life were saying that her intellectual/developmental disabilities (IDD), and not the trauma she had experienced the year before, were causing her behaviors. After the trauma, she developed severe depression and post-traumatic stress disorder (PTSD), but instead of giving her ongoing mental health treatment and trauma-informed care, they used behavior management practices to try to control her.
Eventually I realized that trying to manage her behaviors wasn’t the answer. But it took time. I had to advocate (i.e., speak up and ask) for a more trauma-informed approach that would build my daughter’s self-esteem by making her feel valued and giving her some control in her own life. As a professional who works in mental health policy, I know the system has gaps. A big gap is the lack of quality mental health services for children and adults with IDD.
I am hoping that this article will help parents of children with IDD learn more about mental health, so they can begin to ask different questions and see the need for better mental health services. As parents, we play a very important role in bridging the gaps in the system to help our children live more meaningful and happier lives.
Children living with IDD can, and often do, have mental health conditions. If your child is suddenly having challenging behaviors, mental health conditions might be the root cause. If we find professionals who understand what mental health symptoms might look like in children with IDD, we can help our children begin to recover. There’s nothing about having a disability that prevents you from having a mental health condition too.
So here is something to think about: What happens when a “typical” child (a child without IDD) is aggressive, depressed, isolated, or very anxious? What happens when their behavior is too hard for them and those that care about them to deal with? Usually, parents or school staff or other people working with the child ask for a mental health assessment for the child. If needed, the child is then connected to mental health services to help them get well.
However, what happens when a child with IDD has the same types of behavior? Usually we call in the behavior specialist to develop a [behavior intervention plan](link to: Behavior Intervention Plans and Schools page). We try to control “problem behaviors” instead of thinking about mental health needs first. Why are things so different for our children? They don’t have to be. Kids with IDD need access to quality mental health treatment and services just like any other child.
We know that people with IDD experience abuse, neglect, bullying, isolation, and other forms of trauma at higher rates than their peers not living with disabilities. Studies have shown that people with disabilities experience mental health conditions at 2 to 3 times the rate of everyone else. Yet all too often, providers look only at the disability, and parents don’t know to ask about mental health.
I think it’s time to change things for our children, and I’m not alone. There are many parents and professionals working to improve the situation – through education, with new resources, and by speaking up. For example, “The Road to Recovery: Supporting Children with Intellectual and Developmental Disabilities Who Have Experienced Trauma” is a training toolkit developed through a partnership between the National Child Traumatic Stress Network and the Hogg Foundation for Mental Health. It is the first toolkit of its kind and includes valuable information for providers, caregivers, educators – anyone working with children with IDD.
As parents, we can change the way we talk about our children’s challenges and change what we expect from professionals. Let’s talk about how we can help our children have mental health and wellness and not just focus on fixing “challenging behaviors.” Let’s demand quality mental health assessments, treatments, and supports for children with IDD.
Hopefully this article, the Mental Health for Children with Intellectual and Developmental Disabilities page, the mental health pages, and many others will help you feel ready to ask tougher questions and think about mental health supports and services if your child needs them.
My family and I saw first-hand the damage that is done when we only focus on behaviors and miss the need for mental health services and trauma-informed care. I hope that other parents begin to think about the mental health needs of their child. It’s time to change how we support children with IDD – and it’s up to us to take the first step toward focusing on mental wellness and recovery.