Tag Archives: mental health

When I call it sibling spillover, other parents nod their heads

October 9th, 2019

“That’s okay”, my 9-year old son said, “I can read the rest myself.”

Reading had been one of our sacred times.  His older brother, who had meltdowns several times a day, was not allowed to come in and disrupt bedtime reading. It was a hard and fast rule.  My 9-year old and I read books far beyond his reading level, as his interests ranged widely, but he was catching up.  Still, it was our special, untouched time together and we cherished it.

This night was a hard one.  My older son came down the hall, right up to his brother’s bedroom door, crying and raging.  He flung himself on the carpet, never crossing the threshold, but we could certainly hear him and feel his intensity.  He was still revving up and this meltdown would continue for a while.  So my younger son dismissed me, sadly but firmly.  He then finished the chapter by himself.  I hadn’t realized that he could.  He’d been pretending the book was too hard.

He told me the next night he didn’t need me to do anything but say goodnight.  “I won’t hear how the story ends,” I said.  “I’ll tell you,” he responded. We never read again at night together and I felt a pang each night for months.

This is the way it goes for the siblings of children with mental health needs.  Their parents are torn and there are days they get scraps of attention when they should get big swaths of it.  They learn how to meet their own needs, often before they are ready to.  Like my son who sent his melting-down brother and me away so he could have a quiet bedtime, they often choose what works over what they need or really want.

My younger son played soccer for a number of years.  There were home games and away games as well as practices during the week.  Although I dropped off and picked him up from practice, I attended nearly every game, a promise I made to myself.  Sometimes we would be in the car together or with teammates as we drove to away games and talk about anything except home life and his brother.  Other times, he would commandeer the radio and play whatever he liked, loudly. It was a kind of oasis in time, where we could pretend we were just another mom and son with no other worries.  He relished that time when he had his mom all to himself.

Parents share openly the impact of their child with mental health needs on their time, their finances and even their ability to work a full time job. We describe how our child’s needs are so outsized that it demands every scrap of time, attention and resources we have to try to meet those needs.  It also impacts marriages, relationships with relatives who don’t “get it” and sometimes longtime friendships.  But those things are about us, how we feel, adjust and cope.

The impact on the other child – or children – is something we often have little control over.  Our child with mental health needs may scream threats at their brothers and sisters, disrupt their lives and make them scared and angry.  We can feel powerless, guilty and saddened.  We don’t have easy remedies.

I first realized the deep impact on my younger son when he was only four.  His then-7-year old brother had wild rages where he overturned furniture (how could one small adrenalized boy do that, anyway?), threw whatever was near his hand and maintained this for up to three hours.  My little four-year-old learned to run to a special play area at the foot of his bed, shut and lock the door and pull out the toys he could only use during the be-safe-now times.  He did this several times a week, at least.  One day, a friend asked a question about his brother.  “My brother,” he told her, “is a very good boy who does very, very bad things.”  He also said he was afraid his brother would hurt his mom.

Therapist are quick to diagnose siblings with depression, anxiety or even, PTSD.  Those may all be accurate, but when I talk to other parents, I call it sibling spillover.  I‘ve never had to explain it.  Hundreds of parents have just nodded their heads and told me how their other children have been profoundly affected by the one with mental health needs. And by our inability to give the undivided attention and resources they often need.

We develop strategies, however, like going to soccer games without the other brother with mental health needs. We parent one way for one child, another way for the other.  We look for experiences where the sibling without needs can feel smart, brave, talented and whole.  We love unconditionally and extravagantly.  Mostly, it seems to work.

Tags: , , , ,

Posted in Blog Posts | 1 Comment »

No bra or no visit, which one will you pick?

April 15th, 2019

I survived my son’s teenage years the best way I could. I read a ton of books, went to multiple therapists to get help and reached out to other parents.  When he was in residential, I talked to another mom asking if she found it hard to have a child in a placement like I did.  Sometimes I felt the stigma, the shame and blame of feeling like it was all my fault and people were judging me.  One of the hardest days was when I had to show up with him in court on a felony charge because his impulsive behavior caused damage over $250.

I was too strong to be humiliated. I was a mom who loved her kids and just would not allow it. Humiliation was not something I was going to feel when raising children who needed more treatment, help with trauma caused by a dysfunctional systems and therapeutic work with me as the mother who would try hard over and over again.

But then it happened. Humiliation came in a way that I could not ever have planned or prepared for.

My son needed substance use treatment, mental health treatment and a kind of supervised housing that didn’t seem to exist.  Instead, he ended up arrested again and in jail awaiting trial.

I arrived at the jail on a visiting day, feeling very nervous. The same kind of nervous feeling that I’d had when I visited him in residential, in the hospital or went with him to court.  I smiled at the other people who were also there waiting to visit their loved one. I noticed I was the only white person. Everything I have read is true again. Racial disparities show up immediately as people await to see their loved one.

I have all the filled-out paperwork in my hand, ready to show it. I have checked off all boxes answering their questions.  Have you committed a crime? Are you a citizen? When and where were you born? I go through the line and pass through the metal detectors, ready to get on the bus which will take us to the visiting area.  I am still nervous and scared.  I will be okay, I tell myself. I have been scared before. I will visit, cry and then say goodbye.

A week later, I get ready to go back. Okay, I tell myself, I can do better this time. I remind myself not to bring in my wallet, but take my keys, so I won’t have to store things in a locker this time. I see some of the same people and we share a smile and say how are you.  But this time something is different. When I arrive I am immediately told my paperwork is not done correctly. The guard at the desk looks and comments to the other female guard, “See I told you the inconsistencies are everywhere.” I smile only inside my heart and think immediately to myself, “wow.” But I remain quiet as I wait.

When I get in line, my experience takes a huge jolt.  I walk through the metal detector and am told immediately, “Do it again.” I don’t understand – my keys are not in my pocket, my rings are off, shoes and jacket go through so what’s going on?  I walk through again. This time the guard demands, “Do you have any undergarments with wires?”

“I have a wire in my bra,” I say. She looks at me and states, “You can’t go in with that on.” I immediately explain, “I was in here last week and they did not mention that.”  She looks at me and says, “Take it off or no visit.”

What!!! Are you kidding me? No bra or no visit? Is this for real? I am immediately humiliated and I want to sob. I want to scream and I am so embarrassed but more than anything, I want to see my kid. Instead, I am quiet and go to the bathroom and take off my bra.  I am wearing a white shirt, which would have been the last thing I’d have picked if I knew this was going to happen.  I put it back on, and am completely shamed, humiliated and feeling like a disgusting woman. I walk out and everyone is looking at me walk through again.  The guard takes my bra out so everyone can see.

What have I done to be humiliated like this? I look at her and explain that the comment that I heard in the check-in about inconsistencies is real and unfair.  Her comment to me was a smirk back.  Now my Italian/Irish temper is rising and anger hits.  I say, upset, “Why are we treated like this? I did not think this would happen when I came here to see my loved one did you? “Everyone else nods but is quiet again.  I am so upset and feel so humiliated.

Interestingly enough the next woman came through with a whole corset on and kept it on.

I am fuming.  Why are we taking off our bras but we can bring in our keys? Why are we given smiles when we are told that if we want to see our kids then we need to take off our bras?

Something is wrong when we treat moms and other relatives in a way that makes them feel horribly embarrassed.  I am a mom with a sick kid. I am a mom that deserves to be treated with respect. I am a mom that deserves to be respected and understood, not judged /characterized as part of the problem.

When can we work on being treated like people?  I want my visit so I will take off that bra for now. But I want things changed.

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

Tags: , , , ,

Posted in Blog Posts | 3 Comments »

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.

Tags: , , ,

Posted in Blog Posts | 3 Comments »

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.

Tags: , , , , ,

Posted in Blog Posts | 2 Comments »

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?

 

Tags: , ,

Posted in Blog Posts | 2 Comments »