When my son was seven, he had his first psychiatric hospitalization. He had become incredibly afraid of going to school and was often unable to get there. He had nightmares almost every night and was frightened by television shows he used to enjoy. He started talking about suicide and began to hurt himself. In short, his world was filled with pain and fear. It finally led to a hospital admission.
I took his four year old brother to see him. He watched with wide eyes as the many locks on the psychiatric unit were opened to let us in and then the doors were locked behind us. He looked at his older brother and asked, “Don’t you just feel like a monkey in a cage?” “No,” his older brother vehemently said, “It’s safe in here and nothing can hurt me.” So from the beginning it was clear that they were going to have two very different views of the treatment, the behaviors and the impact of mental health needs.
Mental health issues impact not just one child, but the entire family. When parents have the chance, they can share with each other their sadness, anxiety, anger and frustration. Even though they are also profoundly impacted, siblings have few places to get information, safely vent or even get a break. When talking about my two sons, I often say that one has a diagnosis and the other experiences “sibling spillover.” When I use this term to a group of parents, they nod their heads with recognition. Sibling spillover happens in a lot of homes.
The impact on siblings whose brother or sister has significant mental health needs is just beginning to be studied. Until now, most research has been focused on siblings whose brother or sister has developmental delays, autism or chronic illness and even that is uncommon. Emily Rubin, Director of Sibling Support at the Shriver Center, says that “the most effective intervention is for parents or guardians to talk openly with siblings at an early age, acknowledging their complicated family lives in age-appropriate language.” She wrote an excellent brochure for parents, one of few available resources.
Most siblings whose brother or sister has special needs notice that much of the attention, resources, time and energy seems to be unfairly divided. And siblings can feel angry, resigned and ignored. But when your brother or sister also has behaviors that can be aggressive, bizarre, frightening or embarrassing, there’s even more to cope with.
Siblings have a variety of coping mechanisms. Some become the “good child,’ others withdraw and some may even mimick the behavior that seems to get all the attention. When they grow up, many go into “helping” professions (teacher, therapist, etc.) while others move across the country. At least for a while.
As for my two sons, I was advised that things would get better as they got older. My younger son went from saying that his brother was “a good boy who did bad things” to saying that he was a “terrible brother.” I noticed that my older son often got along better with adults than peers and waited for the day they would both be young adults. Gradually, they rediscovered the common ground that comes out of sharing experiences as a family. Siblings in the same family often see things differently and that’s okay. Maybe that’s the way it should be.
There is a lot of buzz these days about evidence based treatment or evidence based practice. Mental health treatments are being studied, compared and evaluated in the same way that medical treatments have been: for effectiveness, for cost, for patient satisfaction and for long term results. Until recently, parents had to either be content with what was available, popular (anyone remember scream therapy?) or adapted from treatments for adults.
That’s why research is important to families. Most families who are right in the midst of trying to just access treatment, let alone effective treatment, probably wouldn’t say that. But it is. We are not so far away from the days when children were almost always given diagnoses that described their negative behavior (such as Oppositional Defiant) or by terms such as minimal brain dysfunction (now ADHD). Research has created a better understanding that first, children and teens actually do experience mental health episodes and second, that their psychiatric illness often looks quite different that it does in adults. It has helped shift society away from thinking that if a child has mental health needs, then the parent must have created the problem, though there is still too much of that thinking out there.
So with a salute to David Letterman’s Top Ten lists, I’ve put together a list of five reasons why research is important to families. This list is called Top 5 Ways Research Lets Families Just Say No.
Number 5. Research lets families say no to ineffective treatment – even if it’s the kind of treatment insurance companies will pay for. Research can give parents the information to hone in on those treatments that will be effective for their children, themselves and their family. It helps families know what kinds of treatments work for children with a specific diagnosis, such as eating disorder or trauma.
Number 4. Research lets families say no to treatments that waste their time and money. Research that proves the effectiveness of interventions can give families faith that the time, effort and money that goes into those treatment is worth it. As one mother put it: “I want to see the data to help me and give me strength when it is time to disrupt dinner and force my child to get in the car to see the therapist. Give me data so I have the strength to argue for this, because I am so tired.”
Number 3. Research lets families say no to policies that don’t work. Research results can be used by families and family organizations like PAL to advocate for changes in practice and policy that benefit them.
Number 2. Research lets families say no to treatments that are not culturally appropriate. Good data helps families understand whether a specific treatment works for children and families from their culture and if their experience is shared by others who share their ethnicity or speak their language.
And here’s the number 1 way research helps families say no: Research lets families say “no way” when the system doesn’t hold itself accountable. Data is a way to compare a system to itself over time or to evaluate multiple interventions to understand what is truly effective. If it doesn’t really work, why are we still doing it? Families want accountability. We pay high insurance premiums to ensure we receive effective treatment and we all pay taxes, which in turn can pay for services. Data can help us all determine ways to improve the services and treatments we offer our children and families.
So thanks to all the researchers for helping our families say “no.” Without you, we would be nowhere!