When children are sick with physical illnesses like cancer, the entire community rallies around the family. Friends bring casseroles, offer to watch the child’s siblings while the parents spend time with their sick child, and flood the family with tangible signs of love and support like flowers, cards, and balloons.
But when your child is in the psychiatric hospital, no one brings you a casserole.
We often talk about the stigma of mental illness. While stigma or judgment from family and friends can be harsh, the most difficult form of stigma to overcome is the shame we may inflict on ourselves. We would not blame ourselves if our child had a physical illness. But when we start down the long and often twisted path of mental health diagnosis, it’s common to question ourselves. What could I have done differently as a parent? How could I have provided more love and support to my child?
Building a support system
The truth is that while love is important to all children, love alone does not cure any illness. Developing a support system when your child experiences symptoms of mental illness is critical to the entire family’s well-being.
An effective support system has multiple parts. The first part is your child’s healthcare team. This team may consist of multiple members, including a psychiatrist or psychiatric nurse practitioner for medication management, a therapist for cognitive coping skills, a behavioral interventionist or psychosocial rehabilitation specialist to help your child in the community, an occupational therapist to address sensory issues, and perhaps even a case manager if your child’s needs are complex.
Coordination of care is critical to your child’s success—and often successful coordination depends on the parent. Keep a binder with all of your child’s most current information and notes from care providers, and take it to each appointment to make sure that the team treating your child can coordinate their efforts for maximum success. And make sure that you and your child feel comfortable working with each member of the team. A relationship of trust with your providers is essential to supporting your child’s treatment.
Working with the school
The second part of your support system is your child’s education providers. Your child may need a Section 504 plan or an Individualized Education Plan (IEP) to succeed in school. Unfortunately, the process of obtaining and enforcing an IEP can feel adversarial for many parents. While school administrators and teachers are likely on your child’s side, at the same time, the lack of funding for support systems for children with special needs can create a tense environment. Knowing your child’s rights is essential to making sure that the school support system functions as well as possible. You may want to consult a special needs education attorney or work with a trained advocate to ensure that your child—and you—have the right educational supports in place.
Finding emotional support
The most important support system in any emotionally draining situation, whether it’s childhood cancer or mental illness, should be friends and family. But many of us find that our friends and family distance themselves when we have a child with behavioral issues. On the one hand, I completely understand this reaction. My son’s behaviors could be downright scary at times, to him, to me, and to other children. Safety is always a primary concern for children with behavioral issues.
But when you lose your playgroups and your social networks, it can be incredibly isolating. I know there were many times that I felt like I was the only mother in the world who was going through the difficult experience of parenting a child with mental illness.
When I finally shared my family’s story publically after years of suffering in shame and silence, I finally connected with several parents who understood exactly what I was going through because they were on the same journey with their own children. Considering that according to the National Institute of Mental Health, one in five children will be diagnosed with a serious and debilitating illness before the age of 18, there are actually quite a few of us. I also got involved with my local NAMI (National Alliance on Mental Illness) where I now teach the Basics class for parents of children who showed symptoms of their illness by the age of 13.
And I discovered secret support groups on Facebook. These groups have been a life preserver to me in difficult waters. Not only do the group members understand my struggles, but many of them have also already navigated the challenges I am facing, so they can offer both emotional and practical support and advice. If you want to learn more, please reach out to me on Facebook.
A final and important consideration when building your support network is your own mental health. I saw a therapist regularly throughout the years that my son was in crisis so that I would have the emotional strength to manage my own stress and anxiety. While therapy can be expensive, some employers, including mine, offer a set number of free sessions through their Employer Assistance Program (EAP). I also used low-cost counseling sessions through a local university’s clinical counseling academic program.
While I am still waiting for the day when friends bring over a casserole for mental illness, I know that support and hope are out there. Putting together a support team for yourself as well as for your child is essential to both of you living your best possible lives. Above all else, remember this: you are not alone.