Tag Archives: mental health

Alternative facts, fake truths and mental health: are you kidding me?

September 24th, 2018

When my son was 8 years old, his psychiatrist taught me to say, “My eyes don’t see that, honey.”   I said it when he confused his imagination and reality.  I said it when he wasn’t sure what was real.  I said it when he needed to know what was rock solid actuality and what was not.

His uncertainty about what was real had begun when he was in preschool.  Some days I would pick him up and he’d ask me to sing a song we had learned together in preschool class.  I’d say, “I wasn’t there, remember?”  He’d think for a minute, and sometimes he’d agree.  But not always.  It was cute but also a little worrisome in its frequency and his intensity about it.  It didn’t go away as he got older.  It simply changed into different forms.

He would insist that he personally knew characters in cartoons or on television.  He was quite sure he had lived events he’d only heard about.  Then came the day when the numbers on his math paper turned into piranhas swimming on the page.  It terrified him so much, he couldn’t touch the desk. He was eight.

He was a little boy with a big, scary mental health problem.  Sometimes the doctors said it was psychosis, sometimes they said it was mania.  Some even said he had a vivid imagination, but they stopped saying that after a few months.

He needed the people he trusted to say that, “No, there is no monster with one eye looking at us. That must be your eyes seeing things I don’t see.”  He needed people he loved to say, “That villain in the movie did not appear in the living room.”  Instead, I said that the villain was not allowed to leave the movie screen. He needed certainty and unshakable facts.  Without them, his fear and anxiety paralyzed or incapacitated him.

I never knew when a fact had to be verified for him and verified in the exact same way.  But I got good at it, keeping it simple with no embellishments.  I got good at telling him that the truth was the truth just as moms everywhere do.  Except we weren’t talking about little white lies that a child might tell, we were talking about something far more important.  He needed my certainty to become his so he could trust his world that day.  We all got on the same page on this, his teachers, his therapist, his doctor and his family. Without that, his anxiety zoomed to the stratosphere.

Not long ago, I saw someone I know on a national television show.  She has a brother with schizophrenia and yet she talked about alternative facts as if they were a thing.  A real live, acceptable, incontrovertible thing.  I looked at the television screen dumbfounded.  Yet, it’s easy to let terms like “alternative facts” or “fake” or “fake news” slip by us with an eye roll or shake of the head.  Or let them weasel their way into our vocabulary, like the person I saw on television.

Parents of children with emotional and mental health issues live with uncertainty and ambiguity every day.  We don’t know when our child opens his eyes in the morning how the day will go.  We don’t know if this service will actually work or that treatment will make a real difference.  We chafe against this kind of uncertainty but we learn to accept it (mostly) as part of our everyday life.

But we need all the knowledge, statistics and facts we can get. We hang on to them as we build our new normal.  We learn to discern true expertise and, when we find it, we are thrilled by it.  We might not always agree with it, but we respect it and are glad it’s there.  We don’t heap scorn or contempt on it as if it’s ‘only’ someone’s opinion, say about climate change or the value of a work of art.  We know that expertise is a close cousin to facts, yet not quite the same since it has the expert’s perspective woven into it.  That’s okay since we have our point of view too.

I’ve always been a huge believer in telling the truth even when it’s hard, inconvenient or unpopular. After my son began having problems I realized his mental health and his ability to trust depended mightily on it.  I also came to understand that my expertise was built on a combination of hard won knowledge and experience. There is a lot of value in both my expertise and the experts we rely on to provide care.

Truth is not negotiable for me or my son.  It shouldn’t be negotiable for any of us.  There isn’t any alternative.

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Wide Open: Opening Up About My Trauma

May 10th, 2018

I hear my therapist ask me “what was it that brought these memories back up?”

I think about it for a minute. These repressed memories of sexual abuse were bound to pop up at some point now that I’m being open about my trauma. I knew the answer within a minute or so. “I was making a timeline of the emotional and verbal abuse he put me through, and then all of these repressed memories I’d tucked deep down kind of popped up as I was writing.

In my lifetime, I have been sexually assaulted, as well as emotionally,verbally, and sexually abused in a relationship. I hadn’t found the courage to talk about it until about August of 2017. It started with me in the car with one of my best friends. We were talking about my ex boyfriend and the words came flying out of my mouth, the words I hadn’t been brave enough to utter before then. “He was emotionally abusive towards me.” Back then, although I didn’t admit the other abuses, I still felt so free. I felt like I could start talking. My friend hugged me and said, “I’m glad you told me. It takes courage.”

My openness took a break in November of 2017, though, when I got a new therapist. She was extremely rude and had a serious lack of knowledge in trauma and abusive relationships. She asked the question therapists should know the answer to; “why didn’t you just leave?” I already had doubts about her, but this is why I stopped seeing her. If she couldn’t understand that concept, she wouldn’t understand anything about me.

I was hospitalized in January of 2018, and had to address a lot of the trauma I had endured. I had to work through challenges, including flashbacks and panic attacks, and I made it. I got out and am starting to thrive. I have two jobs, and am learning the most important two words I need to know and practice the most: self care.

Self care is the most important thing I do for myself. I write about my struggle. I talk to friends and others in my support network when I feel low. And, I’m learning that I have to stop blaming myself for what has been done to me. I am not the deeds that have been done to me. No, I am much kinder. I am a giving person, and I need to work more on realizing I am not at fault.

If you are, or have been, a victim of abuse, please realize you are not defined by your trauma. You are not to blame for what happened to you. There are people out there who understand. There are people who can and will support you through this. You are so strong, and I am so proud of you for how far you’ve come.

If anyone you love is, or has been, a victim of abuse, please realize there are some things you shouldn’t say. Pay attention to triggers. Ask them what is not acceptable to say, and what their specific triggers are. And most importantly, please respect their boundaries. If they tell you they are uncomfortable doing something or are uncomfortable with what you are doing or saying, respect it. It is extremely important.

Our young adult blogger chooses to remain anonymous. They like to sing and advocate for change.

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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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