Breach of trust, breach of privacy

December 3rd, 2017

“I was walking down the aisle of the grocery store,” Greg said, “and in the next aisle I heard my son’s teacher telling someone the details of his abuse.”  I was driving Greg, a dad of three, to a local radio station where we were going to be on a talk show about children’s mental health.  We had only met over the phone and quickly told each other the brief version of our lives:  how many kids we had and what kind of mental health issues we grappled with.  The conversation quickly turned to our war stories, the stories of hardship and crisis, partly to prep for the interview.  That’s when Greg told me about overhearing the teacher.

Greg was a single father of two boys and a girl, all of whom had different diagnoses.  His second son, his middle child, had the most on his plate.  He’d had several psychiatric hospitalizations, rotated through several medications and bounced around among therapists.  Right now, Greg was trying to get his school system to see that the child they had enrolled a couple of years ago was a far different child with more serious needs.  He had debated with himself, then told the school the details of his son’s story, hoping it would create an “aha” moment.  I’m sure it did, but it also led to a privacy breach.

Greg and his wife had divorced when the children were small and they had gone to live with their mom and her new boyfriend.  He saw them irregularly.  Greg moved in and out of the state, had several jobs where he tried out a few things.  Some were successful, some weren’t.  Then one day he got a call saying there had been charges of physical and sexual abuse against his ex-wife’s boyfriend and could the children come live with him?  He immediately agreed, somehow thinking that his children would be the same as when they were preschoolers, just older versions of the children he had lived with every day.

They weren’t.  Each of them had been through a lot and expressed it differently.  His oldest son kept saying everything was fine but had nightmares at night.  His youngest, his daughter, was clingy and didn’t want to let him out of her sight.  His middle child had received the brunt of the abuse and alternated between hurting himself and exploding with pain and anger.  Greg, bless his heart, had to learn three different styles of parenting in very short order.

The day he heard the teacher telling someone the graphic details of his son’s abuse, the child was with him and heard it too.  The boy began sobbing and curling in on himself.  Greg told him to wait with the grocery cart and stalked over to the next aisle where he had a few choice words to say.  He felt a little better but he couldn’t unhear it and neither could his son.  Neither could the person who was told the story.

Parents tell me over and over again that they simply don’t trust school staff with their child’s mental health information or history.  They worry – without knowing Greg or his son – that something similar will happen and they fear it will hurt or infuriate them.  There are exceptions to this – parents report that they trust special education teachers and school nurses to a great degree.  Sometimes there are individual teachers who “get it” or have raised a challenging child of their own.  These are the people who translate the symptoms, like Greg’s son’s meltdowns, into working diagnoses and unmet needs.   But they seem to be a small group.

Things happen to children through no fault of their own, resulting in trauma and difficult behaviors.  Sometimes things happen within children, too, that are beyond their control, such as overwhelming moods or crushing anxiety or ping-ponging thoughts. Until they learn tools and strategies, behavior is often their only way to let others know how they are feeling and what their needs are.   In savvy schools, teachers, guidance counselors and aides can be “first identifiers” and spot the things that should concern us and raise the red flag.  In schools like the one Greg’s son attended, that seldom happens.

Parents worry a lot about privacy.  Information about us is collected by everyone, or so it seems, and your children’s information is gathered without their consent. (Often without a parent’s consent either.)  Some information doesn’t intrude into our lives very much so we shrug it off.  For instance, I really don’t care if my transponder tells EZPass how many times I’ve crossed a toll bridge or driven a certain highway. But other information is much more sensitive and can shape how people see us.  Personal mental health information still carries a powerful amount of stigma.

Some mental health advocates say that we should all tell our tales of mental health and mental illness openly. It is, they argue, the only way we will reduce stigma and raise awareness.  Every time I hear that, I think of Greg.  He thought by telling the school about his son’s trauma that he would create compassion.  He expected that the team working with his son would respect his privacy.  The day he heard the teacher talking in the next aisle and watched his son sobbing, he changed.  He learned to tell just enough but not everything.  He learned that sometimes the risk of sharing his story can be too great.  He learned that while our stories can create powerful change, emotional safety matters too.

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Serial waiting

November 20th, 2017

I read a report last week about the complicated and onerous waits for outpatient mental health care in this state.  It was a thoughtful report from the Blue Cross Blue Shield of MA Foundation, thoroughly researched.  It told me what many parents already know:  we wait far too long for mental health appointments for our children (and ourselves).  In fact, if you add up all the days and weeks and months you spend waiting, you’d have a nice chunk of time all to yourself, or to rescue homeless kittens, or learn how to use an InstaPot.

It struck me that even the best reports fail to capture an experience most of us have.  I call it serial waiting.  It’s waiting first to get an appointment with a therapist.  It’s waiting to get an appointment with a new therapist when that one leaves.  It’s waiting to get an appointment with a psychiatrist so you can see if medications are part of the answer.  It’s waiting in emergency departments for an elusive bed.  We don’t wait once, but again and again. Serial waiting takes its toll.

The first part of your wait is that long process where you get a list of names, wade through them, cross some off and wait for calls back from the ones who work with children or take your insurance. At this point, you think anyone who works with kids will fit the bill – you are no longer willing to be picky.  Later, as you understand how complicated  and unique your child is, you again go through the process of finding a match, this time looking for someone who has experience with bipolar disorder or school refusal or sensory issues.  Then you wait once again for a slot.  You wait next for a neuropsychological evaluation or an appointment with a psychiatrist.  You get frustrated, impatient, angry, argumentative, cajoling and persistent.  But if it shortens up that wait, you feel okay with getting emotional.

When my son was 12, his psychiatrist went back to Kansas where his roots and family were.  We looked for a new doctor and were turned down by a major institution because my son needed frequent visits and their scheduling didn’t allow that.  We were turned down by a another doctor who thought my child was too complicated, by another who was not taking new patients and still another who only saw children who were 16 or older.  The wait stretched on and on before we finally got an appointment.  The psychiatrist who finally agreed to treat him was awesome, unfazed by his complexity.  I told myself she was worth the wait.  Lucky for us, she really was.

Serial waiting has nothing in common with serial killers, except for one thing.  Serial killers have a pattern where they kill, have a cooling off period and then start up again.  This pattern is a lot like serial waiting, except there is no killing involved.  (Sometimes you feel like you are uselessly killing time, but that’s a different thing.) We have that cooling off period, too, then we find ourselves frustrated and waiting once more.

Not a lot helps shorten the waits.  It’s not a matter of being more skilled or doing more research.  Most of it is out of your control.  There simply aren’t enough clinicians, doctors and mental health workers to meet the demand.  When we look for the next person to provide care for our child, we go to the back of line each time.  Personally, I’ve never become better at waiting.  As a parent, you feel it’s your job to get care quickly, especially once you’ve identified the need.  Many of us pay a hefty amount each month for health insurance, expecting that treatment will be available when needed.  We know that waiting a month for therapy or four months to see a psychiatrist is a huge chunk out of a child’s life.  Once you make it through the wait the first time, wait #2, #3 or #ManyMore are even less appealing.

In the medical world, they talk about uninterrupted treatment.  People with chronic illnesses like asthma, diabetes or heart disease are told firmly not to discontinue medication, lifestyle changes and other care.  In the mental health world, uninterrupted treatment is like a unicorn, aspirational and mythical.  In reality, waiting for a new therapist means that the parent becomes the quasi-therapist.  Waiting for a new psychiatrist or nurse practitioner means cobbling together a prescribing plan to span the gap.  We do this again and again – it’s another component of serial waiting.

Serial waiting wastes a lot of time.  What’s more it squanders our faith in the mental health system (such as it is) and our hopes that while the process moves slowly, the results will be worth it.  Earlier this summer, I asked a lot of parents what waits for care was like for them.  Parents said they had to wade through lists of practices that didn’t take kids, practices that did take kids but weren’t taking new patients or no longer took their insurance.  One parent said several people on the list provided by her insurer had died. If some politicians worry about people who have died voting in an election, aren’t insurers worried about people who have died offering therapy?

 

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Transition

November 6th, 2017

It still takes me by surprise when my now-young-adult children have been doing wonderful for weeks and months and then all of a sudden the signs start showing. Showers not happening, slow and fast speech and maybe a change in routine of medication or daily activities. As the parent I see this and sometimes it takes me a week or two to know that “the change” is happening. Mental health symptoms coming on strong and can be hard to catch.  They are also not wanted.

Sometimes I’ve taken a break from needing mental health support.  We might have had a break from therapy, hospital visits or even needing provider and state support. But when the change happens you need family and friends by your side.

This is when I reach out to the supports – friends, family, and providers. I get the push back from providers every time saying,” your son is independent and his IAP (Individualized Action Plan) has already been written so we can’t do anything else.” Really? What happened to the days and times that providers would just do what individuals needed to keep them healthy? That is really what is needed. Community includes the parents, the family and the family friends. We do not get paid to take and love our young adult.  We see them as family.

As my son would reach out and show signs of needing hospitalization for hallucinations and ongoing voices and fear, I would call the supports to get the TEAM on the same page. The team did not respond to what I thought or my son felt was needed.  Instead it was , Let’s try to keep him in the community. Really, again? I wonder if they realize that when my son and I advocated for the hospitalization it was a for a tune-up to make life stable and better for 3 more years. I am known asking for people to tell me I am right, and sometimes they don’t.  But really I am looking for people to work with us as a team.

My adult children grow and understand themselves even more.  Independence is exactly what we would like to have with our children. It really is a quality of stability and supports that we want our children to know how to gain for themselves. Whether young adults have CBFS or case management, there are many young adults with parents/caregivers that continue to get the calls from their adult children.

Recently, I was asked by a provider to please make sure my voicemail box was empty. I explained that I empty it two times a day but sometimes with two young adults who call me with their challenges it isn’t easy. This happened at a time that both of them were having struggles and using one of the best coping strategies they have.  That was to call my voicemail only to hear my voice so that they would be ok.

I have also been asked why I continue to meet them weekly as it really isn’t needed anymore.  I want to explain in my family I talk to my mom every morning and prior to that, I also talked to my grandfather daily. I have several friends in the community that do not have children like mine and talk to their child daily. So why are my children different? If anything shouldn’t they have normal happenings and opportunities?

I am working with the my children to be independent and what I need is for the people that get funded with the state dollars as providers, and state systems, to work with me to teach skills like cooking, budgeting, social opporutinies, transportation, how to drive, how to work out things on their own. I am hoping for them to be able to live – and not call 30 times a day because they have skills so I do not have to figure it out with them.

When I ran a group home in my 20s for adults with developmental delays, we took every opportunity to teach to include, to model, to reinforce.  In the Transition Age World we need to teach, model, and repeat skills – instead of allowing people to sleep, be depressed and refuse to do anything just because they have rights.  They have the right to learn and be empowered! Let’s work together as a team to make that happen.

Do you want young adults to add to society, feel good about themselves and help someone else? The time is now to change programming, supports and activities to be right- make a change!

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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Parent support is a basic need

October 17th, 2017

When my son was 9 and his brother was 6, we moved back to Massachusetts.  They were both born and raised in southern California (up to then) and we liked it there. The weather was great and we had friends (though the number had dwindled because of my son’s mental health problems). But I was going through a contentious divorce, getting care for my son was a full time job and frankly, the most important thing in the world right then was support for me.  My own family was in Massachusetts and they offered support with open arms.

I was lucky, having a supportive family.  At times they were bewildered by my son’s behaviors and sometimes disagreed with how I picked what to ignore and what to stand firm about.  But they believed in me, believed I was a good parent and that a family’s job is to accept you. It made a world of difference.

Support is a small word that means a constellation of things.  It can look like education and information.  It can be advocacy and walking shoulder to shoulder.  It can be acceptance and non-judgement.  It can come from groups or be given one on one.  It can come from family and friends, formal parent peer support and sometimes, professionals with skills and compassion.

In children’s mental health, we talk about the needs and strengths of families.  Many families have basic needs as well. When we list basic needs, we usually talk about things that can be measured or delivered such as housing, food, utilities, transportation and clothing. Sometimes personal safety makes the list and sometimes legal help does as well.  Most of what is listed under basic needs is about survival or accessing things necessary to survival.

I think parent support, for those of us raising a child with behavioral health issues, is a basic need too.

I have talked to lots of parents who feel as if they cannot take another step.  They find it hard to get out bed, or feel profound sadness, or feel like they are one step away from emotional collapse.  I’ve known lots of parents who need therapy or treatment themselves and say they would have been okay without this emotionally exhausting experience.  I have even visited one or two parents in an inpatient unit.  I’ve met parents who go before the court and say,”Just take him, I can’t do it anymore.”  Please don’t say to them, ‘God doesn’t give you more than you can handle.”  It sure doesn’t seem that way to them.

Parent support doesn’t fix things when you get to that point.  But it sure helps. Often, it helps a lot.

When things are dire, or seem like it, parent support from someone who has been there is pretty wonderful.  Even though you intellectually know you aren’t the first to be in this position, you still feel pretty alone.  You’re not sure there is a route to a better situation and you have no idea how to break it down into small, doable steps.  You doubt yourself. Just like someone without shelter, you are out in the cold. Someone who has been through it has credibility, skills and compassion, all in one package.

Even though formal parent support can be superb, informal parent support can come from many places large and small.  It can be a reassuring story from someone who is a friend of a friend.  It can be a generous gesture.  Before I moved back to Massachusetts, I had a smaller move at a time when my son was having epic meltdowns 3 or more times a day.  Some people from my church took control of the details of my move and even ordered in pizza.  One of them said, “Your son needs you more than he needs you to pack or lift boxes.  So we will do that.”  I felt supported, cared for and able to keep dealing with my impossible day-to-day life.

When parents have support, their kids do better.  Mine sure did.  Pick up a book on self-care and you’ll read something along the lines of “put on your oxygen mask first.”  There should be an equal emphasis on “Let someone get you coffee” or “Let someone show you the ropes” or “Allow someone to tell you how lucky your child is to have you.”  The last one is the one I needed to hear most, because I rarely said it to myself.  It’s one of the things I make sure to say to other parents regularly.  They need to hear it just as much as I did.

When a parent raising a child with behavioral health issues doesn’t get her basic need for support met, she can’t parent the way she wants to.  If you are emotionally depleted, you can’t give any child what he needs, let alone your own child who needs megatons more.  You can’t do that do-si-do where you step in to nurture and step out again.  You’re not replenished and you simply just can’t. “You can’t give what you don’t have,” the adage goes.

Parent support is not a luxury or optional, it’s a basic need.  Systems need to build it in and parents should ask for it often.  We wouldn’t be shy about other basic needs, would we?

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Googling parents like us

September 25th, 2017

Have you ever googled yourself?  After you weed through the other yous, the ones you never knew were out there, you might find of things you had forgotten about.  Maybe you have an old My Space page still up.  It could be there are pictures online you had all but forgotten.

If you self-google, you might also find the other people who share your name.  In my case, the “other Lisa Lamberts” include a murderer, a dog trainer, a composer, a small business owner, a tarot card reader, a bartender, a banker and someone with my name who parties a lot.  Some of those are scary.  Some of those are intriguing, like the Tarot card reader.  Do you think I could I get a free session based on our shared name?

There is actually a name for this online activity.  It’s called egosurfing.  Some people do it for entertainment, some to find others who share your name (guilty) and some to see what information is out there that’s all about you.   Mostly, this kind of information is easy to find and can be part of how people form impressions about us, whether we are aware of it or not.

Have you ever googled something like “parenting a child with mental health needs”?  I have, because that describes me too, maybe more than my name does.

Most people are familiar – a lot or a little – with the facts about children with mental health needs.  They might have heard that 1 in 5 children has a mental health condition.  They might have read somewhere that 50% of all lifetime instances of mental illness begin before age 14. They might have seen in the news that suicide is the 3rd leading cause of death for children and young adults. Those are sobering and worrisome facts.

Not a lot of people stop to think that children live in families.  And that having a child with mental health problems has a huge impact on families.  They are the ones seeking help, dealing with the symptoms (behaviors) and worry, begging, advocating and persisting. The statistics about families are pretty compelling too.

Unlike when you egosurf, the facts and information about parents of children with mental health needs can be tough to find.  It’s not a subject that receives a lot of study and researchers aren’t elbowing each other out of the way to gather information and data.  But there are still some pretty compelling things to know.

Parents of children with emotional and mental health needs have the highest divorce rate of parents whose children have special needs.  Not really surprising is it?  We argue about whether to okay medication and what parenting strategies to try.  We spend so much time and energy just dealing with crises, schools, treatment and meltdowns that there’s not much left over at the end of the day.  We experience those stages of grief, anger, loss and denial at different rates and never in the same sequence as our partner.

The national survey of children with special health care needs reports that we are more likely to lose our jobs or live in poverty than other parents.  For many years, I used all my sick and vacation time to go to school and treatment meetings, visit my son when he was hospitalized and take him to the one pottery class that was willing to have him there.  I tried not to listen to other parents telling me about vacations that we wouldn’t be taking or how relaxing a three day weekend was. I remember one dad telling me they got an unexpected small inheritance from a great aunt. They had intended to set it aside for college, but ended up spending it on all the things insurance wouldn’t pay for.  Others give up promotions or stay in jobs they’ve outgrown because they need the flexibility and understanding their present job offers.

What does this mean?  A lot of us are single parenting and many don’t have the economic power we hoped would be ours.  It also means that parents are throwing most of the resources their family has – time, money, energy, other relationships – into the mix to see if it will make a difference for their child.

Googling doesn’t capture this at all. Search engines are wonderful for finding people, facts, images and so on, but not these particular facts or this specific information.  If you could google “parenting a child with mental health needs” and get a result saying, this is what your life probably looks like, it would probably surprise people.  Especially those other Lisa Lamberts next time they self-google.

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