Bill Cosby once said, “Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” Humor has been used to survive serious illnesses such as cancer as well as terrible situations. Dark humor is often used by police officers, firefighters and doctors to deal with the stress they face each day. Although they don’t share it widely, most parents use humor, often dark humor, to cope with having a child who has significant mental health needs in their family.
Survivors of similar experiences can recognize each other by the look in each other’s eyes. Or by their sense of humor. When someone makes what seems like an odd or even unfeeling remark about their own child’s behavior, another parent whose situation is similar, will smile, nod or even chuckle. The parent of a typical child might offer sympathy or shock but not the “insider” joke. Humor can bring you closer to one another or identify those who have been through similar experiences.
We laugh at our kids because they are so darned funny. There are moments when their behavior is absurd, bizarre or so out of whack with the situation that we have to shake our heads and laugh (usually where they can’t see us). We laugh for our kids, because they have such a hard time seeing the humor in life. They are intense, moody and often everything seems threatening to them. It’s hard to sustain that perspective and their parents usually cannot. We laugh with our kids because they, and we, feel so isolated that sharing fun or humor is a moment we value. We laugh despite our kids because we all need to distance ourselves when we are drowning in emotion and master our fear.
For some people, their sense of humor abandons them when things start to go wrong. For others, it kicks into high gear. Years ago, when I facilitated support groups, I was lucky enough to meet Maureen. Her young son was unpredictable, fragile and often was unsure what was real or not. She would tell stories of his life during each group and add her own droll comments. One time she reported that he was sure he saw a (nonexistant) man in their house. He would report the man’s movements, sometimes with fear, sometimes with confusion. One day he reported that the strange man no one else saw was in her bedroom and he had seen him on the bed. “Honey,” she replied, “I should be so lucky.”
Humor is essential to fighting burnout and keeping yourself focused. It creates a language that no one would else would understand except someone else who has been through it. Humor can bring you closer to one another and build some emotional distance from stress, pain or feeling overwhelmed.
Parents are often advised to “do something for themselves” or take care of themselves when raising a child with mental health needs. Conventional advice includes getting a massage or going away for the weekend, which might be almost impossible to achieve. But nurturing and valuing your sense of humor — and using it often — is something we can all do.
When programs strive to be culturally competent, the result should be that families are “culturally comfortable.” Most parents and youth can tell you whether it is easy and comfortable for them to be connected to and involved with a program. Feeling culturally comfortable helps families decide how they view a program, a worker or a service.
I first encountered the term “culturally comfortable” in the guide, Working with Families of Children in the Juvenile Justice and Corrections Systems. As Trina Osher and Barbara Huff note, some families may require a boost to become involved with their child’s services or program. They list some key strategies to provide that boost and providing culturally comfortable settings is a priority.
The term “culturally comfortable” has been cropping up in health and education settings for a number of years now. Many urban health centers have changed how they practice, finding new ways to share health information and deliver care. Some ask patients how they think a condition should be treated before offering their own recommendations. One pediatric practice in Virginia explored creating a “culturally comfortble” medical home. Some preschool educators have also been strong proponents of ensuring that their classrooms are culturally comfortable. Beverly Gulley and Nillofur Zobairi write that educators need to “know and understand the family’s cultural orientation to make a child feel comfortable and secure, and provide a sense of continuity.”
While cultural competence is a core value for both wraparound and creating a systems of care in children’s mental health, the notion of “culturally comfortable” settings or practice has yet to show up. I think it’s about time. Cultural competence is a rich, complex yet formal standard and most parents and youth would be hard pressed to say how close a setting or practice is to getting there. Yet they would be able to judge whether it was culturally comfortable. Feeling comfortable or uncomfortable is something we are all familiar with. Culturally comfortable settings, dialogues and practice make families feel welcome and respected.
Increasing cultural competence in the delivery of mental health services for children can help reduce disparities and increase access. But these results are frequently unknown to families, especially if the changes are gradual. Changing a setting, practice or dialogue so that it becomes more “culturally comfortable” is something that families can notice and determine for themselves. Determining whether that change is happening can empower parents and youth. Early in the family movement, parents often judged whether materials, programs or approaches were family friendly and later family dirven. So, too, can parents and youth figure out if materials or programs today are culturally comfortable.
Building an approach that is “culturally comfortable” starts with communication and awareness. Find out what the family values, who its members are, what the concerns and goals for its children may be. Ask families what matters to them. Find out what is private in a family and what is easily shared. Culture influences parenting and family behaviors, including meals, sleep, how to dress, interaction with both adults and other children, health care, how to show affection and respect, ways of celebrating and what occasions to celebrate. Many different family configurations are out there. Celebrate moms, dads, grandparents, extended family members, siblings, and others important to children. Model respect and show that customs, languages, cultures, and physical attributes different from your own are important and to be honored. Diversity in our society should be valued and enjoyed, not considered a threat to the values or lifestyle of any group.
Catherine Stakeman, Maine NASW, said that “becoming culturally comfortable between all cultures is a journey, and there is always room for improvement.” To make it happen, it must be everyone’s responsibility.
I have been exceptionally good this year. Well, at least I’ve tried really hard to be good. But there are all sorts of things that can get in the way.
I’ve been doing extra chores this year. It’s hard to pick up after children that hide things, especially cookie dough behind the cabinets, snacks in drawers, and even the papers that get ripped up into a million little pieces because it is an “activity” that keeps one of my kids busy. It can take a huge amount of planning to get the chores done and also manage to pick up and move pictures to the holes in the walls so that the visitors do not feel they have entered a “unsafe ” place.
I am not even talking about the singing that I have to do to get my daughter to eat, or the dancing I must do to get her to drink. It is difficult being the mom and the entertainer. Combining discipline and building positive self esteem is hard. NOT like the Italian home I grew up in.. you knew if the wooden spoon was raised you ran!
I have also tried to go grocery shopping at 11pm so that my children are sleeping all nestled in their beds and limit the number of customers who point at me and say “That”s the mom with the unruly child.” It also helps with the child who feels he needs to eat certain things to keep the voices in his head away.. if you drink lots of water you will not hear the scratching on the window that is not there.
I am trying to be nice to everyone but Santa, have you ever called Mobile Crisis? They want you to schedule a time for the crisis! When you call, they seem to always say it is shift change and they won’t have a clinician in for four hours. How do you pause a crisis? I call, at first to explain, then I’m more demanding but still patient, and then okay, I talk about the laws and then I’m called the parent OUT OF CONTROL.
Santa, I’ve spent a lot of time teaching too. Everywhere I go it seems I have teaching to do — grocery stores, banks, even people in cars looking as you are waiting for the stop light. Seems like everyone has to LOOK at our kids and judge us. So I am trying Santa.. but it gets hard. The new item in the state is Wraparound. What they don’t tell you is…well, can you imagine not believing in strength based families? Why is it such a hard concept? And you know my tough child–the one that hears voices–who doesn’t know what to do and sometimes wonders why he should continue to try? This Wraparound thing would never work for him because he is too unique–the system calls him too complicated.
Finally.. I really want to go back to DMH and get a caseworker that believes in families, believes in clinical help. They call back, they support, and guess what .. they do not want to file 51As. I am trying to believe that the professionals in Wraparound will get it.. but how many times do you need to change teams in order to succeed?
So I hope all this counts. My list this year is a list of the things I think would help me with the system. It’s a little like a top 10 countdown (I would love to be Jay Leno, or Letterman). Will people get my sense of humor? It is different then most… I guess not really if you have a child like mine.
The items on my list are in the order of importance, so if there are too many things for you to carry, please delete as few of the items as possible, starting from the bottom of my list.
Santa, I will leave you organic oatmeal cookies and soy milk (in case you are lactose intolerant) and carrots for your reindeer (organically grown of course).
Thank you in advance. I know you receive a lot of letters so you don’t need to reply unless there is a problem with my list or you need services for another child. I have taught myself to be resourceful so please let me know if I can help someone else get it right!
10. Mobile crisis to move in my home
9. Clinicians who will talk to all parts of the team
8. Schools that do not depend on the parent to play expert, and then blame them if it doesn’t work
7. A secretary
6. A full time nurse – those somatic symptoms creep up on us
5. News station to teach the public about children’s mental health
4. Safety protection.. not what you are thinking… i want bubble wrap so when the heat is hot.. i am protected!!!
3. Another set of eyes.. reality tv please. The money would pay for the lawyers.
2. I always wanted more children, so for this one could each kid in DCF or any other system get a someone to call mom, dad, grandma or grandpa?
1. Ok.. I have decided.. nothing can be cut off my list…I need it all to make things work
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!