Hold On, It's Not Over

A Blog about Children's Mental Health in Massachusetts

Gotta laugh

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.

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February 21, 2011 Posted by | children's mental health | , , , , , , , , , | 3 Comments

Getting to “culturally comfortable”

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.

January 16, 2011 Posted by | children's mental health | , , , , , , , , , , , , , , , , , | 3 Comments

My top stories on children’s mental health in 2010 — what are yours?

We are all looking forward to 2011, making our resolutions and hoping, as we always do, for a better year. The end of the year is also the time when we look back before we look forward. There were many events in 2010 which will impact all of us who parent children with mental health needs or work with them and their families. Here are my picks for the top stories. What are yours?

#1. The health care reform law passed and began to offer protections for consumers across the country and the promise of coverage to the uninsured. The passage of the Affordable Care Act was signed into law by President Obama in March and some portions of the new law are already in effect including that young adults can remain on their parents’ insurance plans. The law requires mental health to be covered and people cannot be turned away or dropped from coverage because of pre-existing conditions. Although Massachusetts has had health care reform since 2006, many families have insurance that is solely regulated by federal law and this will change things for the better for them.

#2. Federal mental health parity was an under-the-radar story which will also have a major impact. The new federal mental health parity law, enacted in 2008, went into effect in 2010. For the first time, mental illness must be treated by insurance companies in the same way as other chronic conditions, like diabetes and hypertension. Parity is incredibly important to those affected by mental health condiditons, yet it was not widely noted while health care reform was debated. Again, while Massachusetts has had a mental health parity law, many families will only see changes under federal parity.

#3. Following an outbreak of LGBT teen suicides across the country , columnist Dan Savage launched the “It Gets Better” campaign in September, which lets gay teens know that if they hang in there, life will improve after high school. It’s a brilliant campaign and thousands of people (both celebrities and regular people) have posted personal stories on YouTube in an effort to offer hope to countless LGBT youth worldwide and shine a spotlight on the harm caused by bullies. LGBT youth are up to four times more likely to attempt suicide than their heterosexual peers according to the 2006 Massachusetts youth risk survey.

#4. The bullying and subsequent suicide of Phoebe Prince in January went from a local tragedy to an international media storm about bullying in schools. The tragedy of her death came just months after the suicide of 11-year-old Carl Walker-Hoover of Springfield and galvanized advocates, lawmakers and the media to advocate for change. In April, the Massachusetts Legislature passed a new law mandating that every school system in the Commonwealth come up with a plan by the end of the year for dealing with bullying issues.

#5. Another local event which captured national media attention was the trial and conviction of Rebecca Riley‘s mother (in January) and father (in September). Rebecca Riley was found dead on the floor of her home in 2006 from the combined effects of Clonidine, Depakote and other medications. Each of her parents was found guilty of murder. Many national and local reporters wrote and narrated stories that doubted the existence of mental health issues in very young children as well as the use of medication. Unsurprisingly, a complicated situation was pared down to a discussion of mental health, medication and young children.

#6. One of the most important stories of 2010 never got media coverage. The first full year of the implementation of Children’s Behavioral Health Intiative, although imperfect, continues to provide Massachusetts families with home and community based services on a previously unheard of scale. Nearly 70% of children and teens are receiving behavioral health screens at well-child visits, and almost 6500 children and youth have received care coordination with nearly 19,000 experiencing at least one of the new remedy services. Families report that they feel they are considered a partner in their child’s treatment and are particularly satisfied with the services provided by a family partner. What is striking is that while other states have created similar services, none has done it on such a scale. CBHI is available across the state to children with signicant mental health needs on MassHealth.

#7. In October, the Boston Globe reported that many children are deemed "too acute" by some hospitals when asked to consider an admission. Children and teens who are violent, hallucinate or have complicated psychiatric histories are most likely to be turned away. Just last week I heard a story of a teen waiting in an emergency room after being turned away from hospitals in Massaachusetts and two other states. Sounds like a story we’ll hear more of in 2011.

These are my top stories. Did I miss any or are there any that should not have made the list?

January 1, 2011 Posted by | children's mental health | , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Dear Santa

Meri Viano is a guest blogger for Hold On, It’s Not Over and the mother of three children. This is her letter to Santa.

Dear Santa,

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

December 19, 2010 Posted by | children's mental health | , , , , , , , , , , , , , , , , , | 3 Comments

Sibling Spillover

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.

December 15, 2010 Posted by | children's mental health | , , , , , , , , , | 1 Comment

Parents, children and psych meds

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.

December 3, 2010 Posted by | children's mental health | , , , , , , , | 2 Comments

Family engagement is a two way street

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.

July 7, 2010 Posted by | children's mental health | , , , , , , | 4 Comments

Bipolar no more?

The new DSM 5, the bible for psychiatric disorders, intends to do away with a bipolar diagnosis for many children and teens.  A new diagnostic category, temper dysregulation disorder (TDD) is being proposed and would include symptoms of bipolar disorder.  The new diagnosis of TDD (does this really denote a serious medical condition?) will surprise and dismay many parents.  Families usually struggle for years with their child’s unpredictable behavior, intense moods and volcanic temper tantrums while strangers, friends and family assume that what is wrong is inadequate parenting.   A bipolar diagnosis has helped many parents get treatment, school services and a recognition that what they are dealing with at home is serious stuff indeed.

The DSM is many things to many people.  Mental health clinicians rely on it to help form an accurate diagnosis.  Insurers use it to authorize payment for medically necessary treatment.  Schools often cite diagnoses in the student’s education plan.  Even juvenile courts use it to better understand the behaviors that might bring a youth into court. 

The DSM 5 Child and Adolescent Disorders Workgroup has listed several reasons for the recommended change.  The rise in prescribing psychotropic medications for children is one.  The group also cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD [bipolar disorder].”   Yet, a 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.

But in 1994, practically no children were diagnosed with bipolar disorder, so any increase from “almost nothing” would be startling.  In the early 90s, I was running support groups where parents would share stories with each other about their child’s moods (from rage to extreme silliness to wanting to die), the nightmares that came almost every night, the rigid food preferences and risky behaviors.  Most parents worked, had little support and felt overwhelmed by the impact on their family.  Parents were told their children had ADHD, anti-social personalities, were oppositional or had conduct disorder.  Somehow these diagnoses didn’t capture the gravity or complexity of the situation.

The DSM is not a coding system set up for the convenience of the insurance industry or to create a shorthand for schools. Yet, a child must often be labeled “something” in order to get services.  We all give lip service to measuring the “functioning” of a child but that still doesn’t open doors or get services paid for.  The reality is that parents often have to fight for services.  We may decry the need for labels and powerful diagnoses, but at this point in time it’s what we have.  Those diagnoses have to increase access for children as well as describe their symptoms.

Most of the children and youth who now have a bipolar disorder diagnosis require medication, therapy, special education strategies and a loving, dedicated parent who is willing to do battle to obtain the needed treatments and services in order to improve things.  It’s a diagnosis that does not imply that “bad” parenting is the cause, which allows parents to be partners in creating and carrying out a treatment plan, just as they would if this were any other medical illness.   It also does not imply the child is to blame, which is often equally important.

Any new diagnosis proposed by the DSM 5 needs to send a clear signal to insurers, schools and the general public that bipolar in children is very real and very serious.  Parents already know this.  There is still time for comments at  www.dsm5.org until April 20, 2010. 

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Yes, there’s been a gap between the last post and this one.  I got a house ready to be sold, sold it and am getting ready to move.  It certainly devoured a lot of my time.  But I have been thinking about children’s mental health a great deal and the posts will keep on coming!

March 29, 2010 Posted by | Uncategorized | , , , , , , , , | 4 Comments