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.
According to PAL’s most recent report, parents rated psychotropic medications the most effective treatment available to their children. A number of people have been pretty surprised. “Really?” they asked. “Why would parents say that?” Treating children with psych meds for attention, mood, behavior or other mental health conditions generates lots of strong opinions, rhetoric and even judgement. Much of it is negative; it seems no one really expects parents to say anything positive.
But parenting is a practical endeavor. Parents want their children to be successful in school, be able to manage their emotions, have rewarding relationships with their peers and family and most of all, be pain free. Parents look for things that work and help their child do better whether it’s structure, a strict diet or medication. We try out different options but end up making choices based on results. Studies show that stimulants work for 70 to 80 percent of patients who need them and anti-depressants for 60 to 80 percent.
In an interview about her book We’ve Got Issues, Judith Warner says that we’ve been talking for the last 10 years or so as if children are routinely being over-diagnosed and overmedicated and lazy, competitive parents are basically acquiescing and pathologizing and drugging their kids in order to give them a competitive edge or in order to save themselves the time and trouble of real parenting. She goes on to say that this is not only false, but also really hurtful. It can actually keep kids who need mental health care from getting it when parents internalize these messages and worry about fitting those stereotypes. They can question themselves and their own instincts about whether something is going wrong with their kids. And this doesn’t benefit anyone.
There are often high expectation for our children. Schools often hold students up to rigorous attendance standards whether or not they have mental health needs. If a child is depressed, fearful or has just returned from a hospitalization, he or she is still expected to show up at school. They are also expected to focus, and behave well. These results are expected by schools, and everyone else, to occur in a very short amount of time. Long gone are the days when children had time to stay home and recover from an episode of depression.
Most parents want their children to stay home and receive care in their own community. We want our children to be part of their family and be able to have a healthy relationship with their siblings. Sometimes medication, hopefully in tandem with other treatment, is what makes this possible. And sometimes, it’s all we have.
Change can be hard. On the other hand, if we don’t change, we don’t grow. What I observe growing here in Massachusetts, sometimes slowly and other times in leaps and bounds, is an understanding that partnering with parents is pivotal to the success of children and youth with mental health needs.
Seems like a no-brainer, right? Children live in families and their families know them better than anyone else. They invest in them emotionally, financially and give them truckloads of time and energy. They worry about them, cheer their successes and feel their failures. In the words of Jane D. Hull, “At the end of the day, the most overwhelming key to a child’s success is the positive involvement of parents.”
While involvement is a start, it anchors the beginning of a continuum. At one end is family involvement which builds to family engagement which in turn leads to a full partnership with families. The kind of relationship where you share information, communicate regularly, hold each other accountable and respect each other’s expertise. If all we aspire to is involvement, then a school, a program or a clinician can ask a parent in for a meeting and check off the box labeled “involvement.” After all, that parent showed up, listened and maybe signed off on some forms. The criteria for involvement has been met.
Family involvement is often unilateral. A program might develop family-program activities without parent input in order to help the program achieve its own goals. A school summons parents to hear their information, not to contribute their own information. A clinical team has recommendations for parents on how to improve family involvement. In each of these instances, the program assumes they are the experts about the child and the parents are the learners. There is a single approach for all families.
Family engagement, on the other hand, is a two-way street. A program works together with families to develop activities that promote goals that they share. They always seek family input when developing plans to increase family involvement. A school listens to and includes the input of families. A clinical team believes that each person, including the parent and youth, has expertise and information to share. All of them assume that parents care about their child’s progress and well being when planning interventions and treatments. They respect the differences of each family and understand that one strategy is unlikely to work for everyone.
Family engagement and its impact on the success of children and youth with mental health needs is also being studied and reported on. In Occupational Therapy in Mental Health, Claudia Fette and Rebecca Estes define family engagement this way: “Family engagement is an active and ongoing process that facilitates opportunities for all family members to meaningfully participate and contribute in all decision making for their children, and in meaningful involvement with specific programs and with each other.” Note that the definition uses the term “ongoing process” and includes the involvement of families not only with their child’s program, but with other families as well.
The bar is set higher to get to family engagement. It means more work than giving parents information and having them sign forms. But the odds for successful outcomes for children and youth go way up too. Change is hard, but it is rewarding. As we are moving in that direction, always remember that the future comes one day at a time.
Ten years ago last month, Massachusetts enacted a mental health parity law. As with most legislation, there were a lot of compromises along the way and no one was really sure if this law would make a significant difference. (It was an important moral victory, though.) The list of diagnoses was limited to those that were considered to be“biologically based” (bipolar made it in, post traumatic stress disorder was out) and insurers could impose limits on anything that wasn’t “medically necessary.” PAL was the only organization talking exclusively about what children and families needed and worked hard to get the insurance benefit to pay for therapy in other places than an office. We had high hopes for what the passage of parity would do for children with mental health needs and their families and a lot of hopeful guesses.
Ten years is certainly enough time to tell if any law has made a difference. What parity is supposed to do is simply ensure that your insurance covers your mental health treatment just as it does your medical treatment: same deductible, same authorizations, same copayments. Our parity law of 2000 was limited in scope — many called it partial parity. Does that mean it only partly helped?
Here are five ways that the mental health parity law — with all its flaws — has helped children and youth with mental health needs and their families. Sometimes it has made a direct impact and other times its influence has been more subtle.
First, parity increased outpatient visits so that children have as many visits as they need in a calendar year (here’s where that medical necessity standard comes in: it’s frequently the insurer who decides what they “need”). Before this, children often had only 8 visits (or 12 or 20) a year, no matter what. Many families reported running out of their therapy visits in the summer, often right before school was going to begin. For many, the individual therapy and family therapy visits came out of the same pool so that if you had family therapy, your precious number of individual visits was decreased.
Second, by including children in the language of parity we agreed many kids actually didn’t have perfect childhoods and their mental health needs often look quite different from those of adults. The language in the law for children and teens has standards around functioning, not diagnosis, even though it isn’t always used.
Third, we laid the groundwork for paying for mental health services for kids in different settings. The law said you could receive therapy at home, at school or in other settings. Why is this important? Children and youth often resist going to an office or institution and parents can have a heck of a time getting them there. Many also will speak more freely in a familiar comfortable setting.
Fourth, this law actually did help reduce stigma. When Nancy Collier and I first worked on this law, we had to use our own personal stories to highlight the issue in the media. Now, we have many families willing to speak out and tell their stories, hoping to make things better. Hearing about real people, their struggles and successes, always makes the issue come alive. This willingness to speak out wasn’t there just ten years ago.
Last, this law affirmed to parents and their children that mental health is as important as physical health. We know our children and familes are in every city and town in the Commonwealth, from the child who shows up in the school nurses office with a stomach ache (often anxiety in disguise) to the child who experiences trauma and has witnessed violence in his home or community. Their future depends on all of us saying over and over again, children’s mental health matters to me, does it matter to you?
What do you think? Has mental health parity made a difference for you?
About a year and a half ago, PAL surveyed parents asking questions about their struggles and successes getting needed treatment for their child with mental health needs. It was a short survey and was available for only 6 weeks. 471 parents rushed to respond and about half wrote comments, told stories and vented about how tough it was to not only get services but to even find out about them. In most surveys about 5% of the respondents take the time to write comments; to have half do so tells us that parents were just waiting to be asked about their lives.
In the report of the survey results, Overcoming Barriers in the Community, there were several noteworthy findings. First, parents reported that out of pocket expenses were hurting their families. This was true for families with little income as well as those in the middle class. Children with mental health needs often see a therapist as well as someone to prescribe medication. So there are two sets of copayments instead of one as well as the copay for medication. Since some parents feel ambivalent about medication in a way that parents whose children have serious medical needs don’t, they are more apt to purchase herbs to help their child sleep or supplements to help them feel less anxious. It all adds up. A 2008 California study reported that there is very little cushion in most family budgets for health care costs and many families make trade-offs with paying other bills or even delaying other medical care.
The survey also asked about respite care and surprisingly, 1 in 5 parents had never even heard of it. Of those who had, 75% thought it was an important part of their child’s care and most found it difficult to get. Many families truly want their son or daughter to stay at home even with challenging behaviors and swinging moods, but the stress of caring for them, coordinating their care and advocating for services is enormous. Quality, timely respite care can make all the difference.
Most poignant were the stories of stigma and the impact of a child’s mental health needs on the family. Parents over and over again wrote of how their child’s behaviors were seen as the end result of their inadequate parenting skills and worse, nearly half said that their extended family made them and their child feel unwelcome. One commented, “It is a frightening and lonely path that I never envisioned….”
Yet throughout their stories, families wrote of their successes. Sure, there were long waits, but when the services were in place improvements began to appear. Yes, it was hard to get useful information, but when they found another parent to exchange information with, share war stories and point out shortcuts, the load was lighter. Overwhelmingly, other parents who’ve been down the same road were named the number 1 resource. That either means that one veteran parent has been very busy helping hundreds of other parents or that parents are networking and supporting one another.
No one raises their hand and says, “Pick me. I’d love to be the one to parent a child with mental health needs and face all these challenges.” But for those that find themselves doing just that, access to good information, effective services and other parents was cause for gratitude.
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!