My philosophy as a clinical social worker has always been that families with children suffering from mental health problems need the appropriate skills, tools, and services to effectively help their child. These families often encounter deficit-based delivery systems and somehow get stuck. I never understood why. Then my daughter, Alana, started me on a journey I never expected to take.
It began in 2004. Alana, then 6 years old, began having what we thought were night terrors. It made sense until they started happening during the day. She became combative, mutilating herself and anyone who got in her way. Seizures were diagnosed and then quickly dismissed as we made our way to our first psychiatric admission.
Since that first admission, Alana has been in over 12 placements, including psychiatric hospitalizations and sub-acute stays. It is only now that I really understand what the parents I worked with were going through. I understand what it is like to be blamed for my child’s behavior because she doesn’t fit neatly into a diagnostic category. I understand what it is like to watch your child end up in a restraint when all you want to do is hold her. I understand what is like to feel like you are living in a fishbowl as everyone judges your every interaction. I finally understand the toll mental illness takes on a family.
Instead of giving up, I decided to share our story and view this journey as an opportunity to grow as a professional and a parent and pass along what we have learned along the way.
Families need to understand our behavioral health system. The child’s parents are in charge of treatment. They need to know how outpatient therapy and other treatment modalities differ, what the admission criteria are, and how to access them. I would urge parents to familiarize themselves with their insurance benefits and to know how and when to seek help from their state health care advocate.
Make it your business to research your child’s diagnosis. Get together with other parents to advocate for extra support, for improved DSM diagnoses, for accommodations needed at school, and for specific protocols in treatment facilities. Parents who choose to advocate can increase the availability of mental health resources. Get involved! Find other parents in the same situation! Encourage your family therapist to start a parent support group. There really is power in numbers.
All parents need to be able to advocate on behalf of their children. It’s important to compile a complete history of your child’s illness, medications and hospital admissions. This document should combine medical, family, and educational information. This narrative should be kept up-to-date and used to educate any new provider who may be unfamiliar with the case. This summary can help bring providers together as a cohesive outpatient treatment team so if the child goes to the hospital, everyone agrees about the interventions that are needed and the discharge criteria. I found that doing this was invaluable to my child’s treatment and my own sanity.
When a child is in acute distress and the family has knocked on many doors seeking help, they may be grappling with many feelings including helplessness and fear. Even when there’s no solution in sight, professionals must listen to accounts of the nightmare and grief of losing the dream of a “perfect child.”
Every professional can and should help parents make time to care for themselves. Siblings, who often feel upstaged by the ill child’s symptoms may also need coping strategies that let them adapt without losing their childhood or their sense of self.
Alana and I continue on our journey, and it’s not an easy road. What we have learned is to listen to each other and to remember that we are in charge of the illness and the treatment, even when it doesn’t feel like it. We have also learned that there is a whole village of people behind us who can help. Parenting a child with mental health challenges has taught me that it takes a “village to raise a child.” I encourage you all to be part of someone’s village.
