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.

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

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

Facing up to barriers

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.

June 24, 2010 Posted by | children's mental health | , , , , , , | Leave a comment

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

Who’s the expert here?

<div xmlns:cc="http://creativecommons.org/ns#" about="http://www.flickr.com/photos/maile/1745480/"><a rel="cc:attributionURL" href=So what makes an expert, well, an expert?  It’s certainly a step up from just knowing a lot or being acquainted with the facts.  According to the dictionary, an expert has skills or knowledge that’s gained from training or experience.   Usually, those skills are in one area or that knowledge is focused on one particular subject.

Let me say it straight out:  parents are experts about their children and about their families.  And that expertise should be recognized and respected.  Far too often, it is not.

We all seek out experts when we encounter a problem that takes special skills to solve.  If your car makes a strange noise or the check engine light lights up, you might go see a mechanic.  If you encounter a legal problem, you might seek out an attorney.  If that mechanic or lawyer finds out you own a bicycle shop, he could very well ask your opinion about selecting a new touring bicycle.

From the very first moment, a parent learns everything she can about her child.  She observes her child closely and is often fascinated by what makes him laugh, what jump starts his curiosity and what works for him each step of the way.  She notices how he carves a place for himself and how his ups and downs affect the entire family.  She slowly builds a body of knowledge.  In short, she becomes an expert about her child.

When parents encounter a problem that worries them, they seek out knowledge and advice.  They might turn to a doctor, a teacher, a therapist or a relative.  They bring their observations but also a hard won understanding of their child.  However, their often expertise isn’t acknowledged.

A number of years ago, a colleague of mine told me how she took her son to a first therapy appointment.  The therapist explained his ground rules around confidentiality and how often (or not) he consulted with parents.  He ended by saying that if her son divulged he’d experienced abuse or neglect during the therapy appointment, he would have to file a report.  My colleague, without missing a beat, replied, “Likewise, doctor, if on the way home my son divulges that any abuse occurred during his appointment I, too, would have to report it.”

The therapist was startled and somewhat taken aback.  In setting up the “ground rules,” he was not thinking of my colleague as an expert partner he should treat with respect; instead he was telling her the way things would be.  While she agreed he should act if her child’s safety was threatened, she also knew that her son would benefit more if her understanding of him was included.

In our state and in the country, we are shifting away from traditional services to home and community based services.  In order for those services to be successful, they must be family driven and youth guided.  When family driven care is at its best, families are considered expert partners when planning treatment and making decisions.  It requires a shift in attitude and for some, a leap of faith.

To be successful, we have to ask:  So, who is the expert? What do you think?

February 8, 2010 Posted by | Uncategorized | , , | 3 Comments

Diagnosing very young children

Last week Rebecca Riley’s mother went on trial, accused of deliberately overdosing her 4 year old daughter.  Although most of the media coverage has so far been focused on the facts, I keep waiting for the other shoe to drop.  What might also end up on trial is the practice of diagnosing and treating young children.  

As little as 10 to 15 years ago the public found it difficult to believe that elementary and middle school children could experience depression or be diagnosed with mental health disorders.  Childhood is supposed to be a time of happiness, right?  The combination of increased media coverage, targeted studies and consequent data have helped increase public acceptance that children can and do experience depression, anxiety and mood disorders as well as ADHD.  However, the public doesn’t really accept that young children can have mental health problems and has no idea what that looks like if they do.

Eight years ago PAL and Health Care for All issued a report, Speak Out for Access.  We surveyed families whose children had identified mental health needs about their experiences.  We were surprised to find that almost half (48%) of the parents who responded said that their child showed signs of mental health problems by age 4.  Let me say that again:  almost half the parents said their child with mental health needs showed signs or symptoms by age 4.  When they brought their worries to their child’s doctor, many felt their observations were dismissed.  Some felt that earlier treatment would have reduced many of the problems they faced later.

This is a topic that is near and dear to me.  When my own son was three, he had a bedtime ritual that lasted 20 to 25 minutes.  It involved an empty spray bottle and a series of spots we had to spray to banish monsters.  If we missed a spot or were interrupted, the ritual had to begin again from the beginning.  He cried and was terrified if we skipped the ritual and then couldn’t fall asleep — often for hours.  His pediatrician assured me he would grow out of it.  He did, but other fears and rituals immediately took its place.

Last Friday, a journal article authored by Mark Olfson of Columbia University, reported that the number of children aged 2 to 5 who have been diagnosed with bipolar disorder and treated with psychiatric medications has doubled over the past decade.  The study also noted that fewer than half the preschoolers had received a mental health assessment or a therapy visit, which is worrisome but unsurprising.  After all, where do you go to find help for a 3 year old?

There is a difference between prevalence (how often something is diagnosed) and incidence (how often something actually occurs), although we confuse the two.  According to the journal report, young children are being diagnosed more frequently.  According to parents in our report, a large percentage of children, later diagnosed with mental health disorders, show symptoms quite early. 

Parents want to help their children, especially when they see them hurting.  They spot the intensity or unusual length (like my son’s ritual) of a behavior.  A diagnosis often feels like a double edged sword;  it can open doors to treatment and services but brings the stigma of a label.

January 25, 2010 Posted by | children's mental health, Uncategorized | , , , , | 2 Comments

The unexpected parent

“You have to be the parent your child needs you to be,” she told me,  “not the one you expected to be.”

This piece of advice was offered to me by a veteran parent at the beginning of my odyssey through the children’s mental health system.  I was at a parent support meeting hoping to learn something that I could grab on to.  Most of the professionals in our lives were quick to tell me the things they thought were wrong with my child and the ways they could or couldn’t help him.  But no one told me what I could do that might actually work.  So I turned to other parents to find out what it was they did.

This advice intrigued me.  I could change myself.  (I sure wasn’t having much luck changing my son). I was definately being transformed already by my frequent failures and less frequent successes with a very challenging mental health care system.  I had already discovered that I had to throw out all of society’s ideas of what a “good” parent or a “bad” parent is.  The rules had all changed.  Looked like I would have to change too.  I had become a member of a very elite group of parents and wanted to learn from the other members.

Parenting a child with mental health needs can be difficult and exhausting.  Typical parenting strategies from time outs to rewarding good behavior might get you a different result every time.  Like many families whose children have mental health needs, I tried a system of rewards and consequences only to find that no matter how consistent I was, my son’s reactions were not.   I knew how to parent my other son but often wondered, “How do I parent this child?’

Most of us learn from our own parents and the parents of our friends while growing up and form an idea about what a “good” parent is.  Sooner or later we discover that we need to shift our focus from being a “good” parent to being an “effective” parent and it’s pretty tough to figure out just what that is.  Some weeks it seems that Thomas Edison’s observations about the process of inventing should also apply to parenting.  He remarked,  “I have not failed. I’ve just found 10,000 ways that won’t work. ”

In many parent support groups or other groups of parents whose children have mental health needs, I have often observed that two parents with very different parenting styles can face almost identical challenges.  An authoritarian parent and a more laissez-faire parent each find that their middle school child with a mood disorder has intense rages or irritability, for instance.  Although their child’s behavior is not a result of their parenting style, the authoritarian parent is advised to be less rigid, while the lenient parent is told to have a firmer hand.  And other parents might murmur (often in front of them), “I would never let a child of mine behave like that.”  They, too, are looking for ways to become the parent their child needs.

When parents tell me of their experiences and the many calls they have made, strategies they have tried, hours they have spent and love they have lavished, I often say, “How lucky your child is to have you as his parent.”  And I can’t say it often enough.  Therapists, teachers and treatments may all come and go.  Some solutions might work for a while but then you have to find a new one.  Most parents become advocates, walking encyclopedias and could write a critical review of children’s services for Consumer Reports.  They are the parent who hangs in there, is resourceful and has a sense of humor is.  Maybe that’s the parent we should expect to be.

January 6, 2010 Posted by | Uncategorized | , , | 2 Comments