A little over a month ago, 5 fearless parents and I conducted a 3 hour workshop for residential providers from all over the country. Their national conference was held in Boston and we were the only workshop with an honest-to-goodness parent panel. Some of the other workshops included youth speaking about their experiences, but we were the lone parent voice. We used our time effectively, recounting experiences and giving advice.
Residential care for children with mental health needs is slowly changing. This is partially caused by changes in funding and certainly influenced by a new understanding that out of home care must be seamlessly connected to a child’s family and community. The Building Bridges Initiative recently held its 3rd summit in Omaha and continues to promote practice and policy to strengthen partnerships between families, youth, community and residential based treatment. There are some truly innovative and exciting programs being developed. It should go without saying that any new policy, practice or design needs to include input from parents.
With this in mind, our presentation also included a top ten list called, “Ten Things Parents Want Residential Providers to Know.” This list is a result of many heartfelt conversations, moments of humor and often exasperation shared by dozens of parents over the years.
Number 10. See me as part of the solution, not just part of the problem. Let me know what you’re finding is effective and what isn’t working – I’ve been through failures before and I know they are part of the process.
Number 9. I know things about my child’s history, strengths, responses and culture that no one else does. I’ve known my child since he/she was an infant and I know things no one else in the world knows. Sometimes I worry that some of the information in his file might be wrong.
Number 8. While you are making decisions based on my child’s needs, I am making decisions based on my family’s needs. With each decision I think about the impact on my entire family, especially the other children.
Number 7. When we have a difference of opinion about what to do for my child, remember I am an expert too.
Number 6. Don’t call me Mom (or Dad).
Number 5. I want to know that you see my child as a special and unique individual. As one parent told me, “Just for the length of this treatment meeting, I want my child to be just as important to everyone else as he is to me every day.”
Number 4. I am tired and frustrated by everything we have gone through to get to this point. There are days when I don’t feel successful at parenting this child. At our first meeting, I was probably at a low point.
Number 3. I really value good information. Getting useful information to help me understand my child’s diagnosis and how to access treatment for him has been very hard to come by.
Number 2. Regular, detailed communication is important to me. I want to hear about my child’s progress and help develop strategies to build on successes. I appreciate all forms of communication (phone, email, newsletters)
Number 1. Please train your staff on the principles of family-driven care. I am getting tired of training each new person myself!
This week is Children’s Mental Health Awareness Week and there are events all over Massachusetts. Some of them are splashy — such as dinners and photo exhibits — but most are low key events organized by parents and those who want to do something about the stigma still attached to mental health disorders. The governor and many mayors issue proclamations, posters and flyers are put up in communities and everyone is urged to wear a green ribbon. I’m wearing one right now; are you?
What I love most about children’s mental health week is that it still belongs to the families who started it. In November 1995, I went to the annual conference of the national Federation of Families and heard a presentation by a passionate, funny and articulate group of families from Missouri. They had come together and decided that the most important thing they could do for their kids was try and reduce stigma. “This isn’t a casserole illness,” one said. “No one comes to your house with lasagna or a casserole when your child goes into a psychiatric hospital. Instead, they either don’t know what to say, or worse, act as if this is somehow the parent’s fault.” So they started a campaign to raise awareness, reduce stigma and celebrate their children. It’s still going strong in Missouri to this day.
After the conference I brought all their materials and suggestions back to Massachusetts. In May 1996, two friends, Nancy Collier and Marian Butler, and I launched Children’s Mental Health Week in our state. We created posters, a tool kit and took a stab at writing public service announcements. Our coworkers and friends gave us small donations to help with printing, mailing and glueing ribbons together. We met each other in McDonald’s parking lots and handed off materials. We were determined it was going to be a success. Parents loved it and put up posters in libraries, supermarkets and schools. And proudly wore their ribbons.
We got technical advice from the family organization in Missouri along the way. (I’ll never forget the phone message from one staff person, after we had had a few days of telephone tag. He was trying to connect to get some information to me and kept saying, “I want to git with you so I’ll keep tryin’. I’m gonna git with you all in Massachusetts.”) They were so pleased to see families in other states mirror their efforts.
Next year will be the 15th year we have had Children’s Mental Health Week in Massachusetts. Children’s mental health issues are more often in the news (both positive and negative coverage) and our awareness has increased. Parents still emphasize the impact that a child’s mental health needs have on everyone in the family and sometimes it’s heard. We’ve made some progress but there’s still a lot of ground to cover.
Guess I’ll keep wearing that green ribbon!