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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.

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Old me, new me, changed me

August 23rd, 2019

Like most teen girls, I tried on different personal styles and borrowed cool things to say from books and television. Some just felt right and I kept them while others seemed jarring, even to me.  I learned what fit and even more, what made me feel more confident and easy in myself.  I looked around for role models too.  I was drawn to my best friend’s mother, an artist who was tall and slender, gracious and thoughtful.  She had created a home that was filled with unique and beautiful things.  Their family dinners were plated in a way that we see on Instagram today, not for effect, but because she found beauty in it.  I wanted to absorb all of it through my pores, taking it in, making it mine.

Over the years, I borrowed from many other women, learning through re-creation.  Sometimes it was personal (clothing, hairstyles) but more often it was learning a new way of moving through life.  I thought I was pretty happy with that version of me.  Then I had my son.

My son needed an advocate, a persistent, smart, untiring mom who knew how to collaborate but hold the line.  He needed a different version of me.  Not the gracious, trusting one but one that could take the bull by the horns for him.

I found myself doing what I had done as a teen girl:  grabbing a turn of phrase here, an emotional or intellectual approach there.  I had an uphill learning curve to reach a better understanding of mental health issues in children, what care was available (or not) and how to access it.  But more than that, I knew I needed to appear confident, determined and strong.

I soaked up the language I heard from national leaders like Barbara Huff on how important families were to the healing and success of their children.  I listened to parent leaders giving workshops on special education or finding resources and noted how they emphasized the importance of smart, savvy parents (and modeled it).  I absorbed stories of IEP successes and insurance showdowns, where the parent simply didn’t care how many people were naysayers and plowed ahead.

I also had a friend, whose son had Asperger’s, who was famous for not taking any hooey.  Once, when she brought her son to his first meeting with a therapist, the therapist took her aside for a private word.  He said, “I am a mandated reporter.  If your son tells me anything during our session that worries me, I will be required to report it.”  Without blinking an eye, she replied, “Likewise, if my son reports anything to me on the ride home that worries me, I too will be required to report it.” When she told me this story, I burst out laughing.  After I was done, I made a mental note not to placate my son’s team ever again.  Instead, I would be direct and clear.  By the way, my friend went on to have a strong relationship with her son’s therapist.

It wasn’t easy work.  I didn’t start out not caring what others thought of me and it was uncomfortable challenging people I often liked and respected.  But going along and believing that things would work out didn’t lead to the care, school services or service slots my son needed.  While I always knew that squeaky wheels get more attention, I really didn’t plan to become loud and squeaky. But advocacy demands it sometimes.

When I was a few years into the strategic-warrior version of me, I found that other parents, especially other mothers, were grabbing my phrases and approaches and running with them.  I would talk about what I said at a team meeting or how I politely but adamantly disagreed with a therapist and someone would remark, “I didn’t think you could say that out loud. I’ve always bitten my tongue.”  Once, when my son, then a teen, was hospitalized (temporarily, they said) on an adult unit, I called my insurer and ask for him to be transferred.  I pointed out that when he was in group therapy on the unit floor, the next youngest person was 41.  My insurer hemmed and hawed and I insisted.  They said that approval would take time.  I insisted.  They pulled out a series of reasons why this wasn’t doable.  I insisted and they found him a new bed on an adolescent unit.  I’d tell this story and other parents would say, “How did you phrase that?”  Then they would try it out for themselves.

At the start of my son’s mental health problems, I would jokingly ask his therapist for a handbook, so I could look on page 57 and figure out how to handle school refusal or on page 123 and follow the instructions for a meltdown.  What I didn’t say was that a I also needed a handbook to reconfigure myself, so I could learn to take the hits, roll with the punches and come up with a brilliant move or two.  Of course, neither handbook exists but I had living, breathing examples in other parents who had forged their way before me.  I will always be grateful to them.

We all know that life happens and it changes us.  But we change ourselves, too.  I thought I was done when I was a teen and young adult, drawing on the examples of other women.  Then I thought that I was creating the almost-final version of me when I needed to become an uber-advocate for my son.  However, I keep finding wonderful traits and points of view that intrigue and amaze me.  I muse to myself, “What if I tried that out?”  And sometimes I still do.

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Is hope a difference maker or something we give lip service to?

July 22nd, 2019

It was one more meeting where I described my young son’s extreme moods.  It shouldn’t stand out in my memory, but it does. It was a tedious meeting in a way, telling his story and mine one more time.  Yet, I was comfortable, too, painting a picture of his days, some wild and hyper-charged, others filled with pain and darkness.  This was a familiar task for me at meetings, at intakes and when someone new was providing care.  It was an emotional landscape I knew very well.

On the ride home, I thought about his moods, which were often two (or more) wild and crazy extremes.  I had a moment of clarity when I realized that part of my comfort was that our lives – his brother’s life and mine — had those same extremes.  We rocketed from periods of hope and expectancy to times of despair and darkness. Sometimes they mirrored my older son’s trajectory, but not always.  Describing my son’s swinging moods was the same as portraying our roller coaster home life.

I’ve thought a lot about hope and darkness, two emotional states we lived with over many years, so that it felt sometimes like they were additional family members.  Sometimes the jump from one to another was abrupt, like someone came and changed the paint on the walls from stormy gray to sunny yellow overnight.  Other times, it was like a dimmer switch that was slowly moved from low to bright light.  Some days my son would emerge from hours-long, pain-filled crying along with waves of outbursts and I’d see in his eyes that he was back.  He was lost and had re-emerged.  Those days I’d feel a flare of hope. My mood mirrored his.  Other times, my feelings of hope or darkness had less to do with him than my own feelings of passion or inadequacy, determination or exhaustion.

Hope and darkness were regular companions for me for a long while, just as they are for many parents raising children like my son.  We require ourselves to act calmly, firmly, knowledgeably or passionately around our volatile children and at meetings when we ask for help.  Sometimes we actually feel that way, though many times we fake it.  Inside, we are nurturing hope or battling dark thoughts.

Hope is a funny thing.  We talk about it a lot in the children’s mental health world and sometimes it’s even written into care plans. We don’t teach people how to nurture it or grow it, however.  We don’t recognize it and remark on it in others or ourselves very often.  We don’t reward it or know very much about strengthening it.  Often people believe it’s the child who needs hope, when their parent needs it just as much.

Hope is not reciting platitudes such as ‘everything will turn out for the best.’  It’s not little sayings or making wishes.   It’s something much more durable.   Chris Hedges, American journalist, writes, “Hope is not comfortable or easy. Hope requires personal risk. It is not about the right attitude. Hope is not about peace of mind. Hope is action. Hope is doing something.” For me, hope is made stronger by a sense of expectancy.  Not expectations, which regularly got blown up, but a feeling that something positive and satisfying might happen. And then doing something, even a small thing, to move life in that direction.

Parents are pragmatic people.  Our hope is anchored in real things, even if they only occur in small doses.  I pinned my hope on concrete things like the doctor saying his brain would change at age 14, letting him observe himself and be able to use those observations to participate in his own care.  I felt hope when I heard about the pipeline of medications that would be available in a few months or a year, when we’d exhausted all our options.  I was hopeful when I discovered programs or ideas to help my younger son, whose needs were just as important.

When those things actually happened my hope stayed steady for a while, chasing off the dark thoughts.  Sometimes I carried the embers of hope for all us, my sons and me.  I would see that spark of expectancy in my son’s eyes when he found something to look forward to and never want it to dim.   That was his hope joining with mine.

I got hope from other parents, too.  Parents ahead of me on their parenting journey, who had weathered emotional tsunamis and earthquakes. I heard how they got through it. They offered me ideas and strategies as well as laughter and understanding. They were parents who had figured out a way to grow hope.  Parents are practical people.  They don’t offer platitudes or empty promises.  They know the value of realistic hope.

Sometimes we are afraid to hope.  Sometimes our hopes are dashed.  But hope is a persistent thing if we let it be.  And we need it.

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Rookie therapists, rookie family support

June 26th, 2019

“Thank you for the opportunity to work with your son,” the therapist said at our last appointment.  “I’ve learned so much.”  He had been a good therapist but a very inexperienced one.  The old therapist had moved out of state and my son needed an appointment with no lag time, so we traded off waiting for someone experienced with having someone quickly.  I knew from the beginning that he was a rookie, but the advantages outweighed that, or so I thought.  He had grown in his understanding of us and the next person would reap that benefit.  Just not us.

My complicated son was a challenge to even the most experienced therapists.  His laundry list of diagnoses and symptoms didn’t fit neatly into any slot.  But inexperienced therapists mistook his anxiety for ADHD and his meltdowns for conduct he could be enticed to control with star charts.  Both were untrue. We had to wade through these tentative, by-the-book steps each time we had someone who was a rookie.

Complicated kids with significant mental health problems get matched to newbie therapists every day.  Veteran parents talk online or in support groups about ways to speed up their learning curve.  We share our hard won knowledge with them and try to temper their faith in the system with our practicality.  Sometimes it works.

The very best match is for a complicated child to see an experienced therapist.  That therapist draws on their book learning, just like rookies do, and knows when to throw some of it out the door.  They pull strongly on their own hard won knowledge and have a really good idea of when to stay the course or try something new.  They often see parents as allies, bolstering our belief in ourselves.  They get it.

Many years ago, I heard Robert Brooks, a child psychologist, speak about children and building resilience.  Although I was fascinated by the topic, what I still remember was that he said he should probably go back and apologize to the patients he treated early on in his career, which was an unexpected thing for a psychologist to say.  There was so much he didn’t know, he had realized.  He gave his then-best in those early days, but lacked the wisdom, experience and empathy he gained over time.  Those are precious components in the work of therapy, ingredients that are built steadily and slowly, which make an enormous difference.

Recently, I had a chance to co-author a chapter on family advocacy in a handbook for the American Psychological Association with Kathleen Ferreira.  We wrote about the work of family partners and family support specialists and how their impact is unparalleled.  We were enthusiastic about promoting the importance of family advocacy in a volume that will probably be used to educate new psychologists.  We paused midway through and talked about the mismatch we both see between complicated kids and inexperienced therapists.  “It happens with family advocates, too,” I said and we immediately saw the parallels and went on to toss that idea about several times.

Most professions recognize that the beginner, the one who has the initial required qualifications, still has a long way to go.  In sports and law enforcement, the newbies are called rookies.  Other professions, like social work, have different levels of licensure, which indicates both experience and education.  In other occupations, such as being an electrician or plumber, there are well-defined levels of expertise.  This is also true in professions as diverse as musicians and carpenters.  A light bulb went off for both of us and we decided to apply this to family advocates.

At the novice level, we wrote, there is a great deal of enthusiasm, but also “well meaning mistakes.”  Next, at the apprentice level, the family support person has greater skills and is beginning to understand how tough the system can be to navigate.  At this stage, people often realize that while they did everything right, they didn’t get the results they intended.  Third, at the journeyman level, the family advocate has more good days, better results, has seen more and is becoming adept.  Finally, at the master level, we wrote, the family support person or family advocate “does not guess, but rather knows what to do. The advocate has skills that often make the work look effortless to others, and that is reflected in the results.” This is the ladder to mastery – from novice to expert.

Family advocacy or family support work is still pretty new and we are all still trying to find ways to talk about it.  When my son was young and we were trying to educate a rookie therapist, I noticed that my fellow family support specialists were all over the map in terms of expertise.  Some had it all together with mountains of knowledge and skills.  They were comfortable helping families whose children had significant mental health needs navigate through special education, call their insurer or make their case to state agencies.  Others knew some of that, but not all.  Still others were rookies, enthusiastic, knowing their own experiences could help the families going down the same road.  But they had a lot to learn like any newbie does. When this work was new, we were quiet about our learning curve.  We were working toward acceptance, endorsement and validation of our work.  It was the right thing to focus on then.

That was then.  I’ve been the novice, apprentice, journeyman and master.  I’ve faked it, hoping no one saw my skill gaps and I’ve said, “Let’s figure it out together.”  Like that rookie therapist my son had, I’ve learned from every parent who was gracious enough to teach me what they knew.  In the end though, complicated kids and families do better when there is expertise.  Rookies, please learn quickly.

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Arrested and in shackles

June 10th, 2019

Every mom hopes that her children have wonderful opportunities in life.  That hope was always there, living in my heart, the same as most parents.  We all want our children to be happy.  We would like our children to succeed. We want them to graduate, we hope for them to get a job and do something they love to do. We don’t care much what it is as long as it is meaningful and they are following through. But those hopes and wants change over and over again when you have a child with trauma.

They changed for me with one phone call.  I got a call from the police in the middle of the night.  I jerked awake and heard, “Hello, Ms. Viano.  We have picked up your son. He was arrested and will be in court tomorrow morning.”  After I ask in shock, “What? Why? How? “ I realize that it’s 2 a.m. and I need to talk to someone but I have to wait.  The hours from 2 to 6 a.m. are really hard.  Going back to sleep is out of the question.

While I wait for 6 a.m. to come and I can call my mom to talk about it, I pace in the kitchen. Make coffee, get the tissues and cry. I wonder what happened, I don’t know any of the details because I was too shocked to ask. The not knowing makes it worse and my mind makes up stories, each worse than the last.  Then I remember, I can call and ask those questions.   I pick up my phone, call and get more information.  It leaves me with more questions and more turmoil.  I have some of the story but I am still unable to understand and make sense of this.   I keep checking the clock.

Finally, it’s 6 a.m. and I can call my mom. She answers immediately asking, “What is wrong? Are the kids okay?”  I start to tell her only to have my voice crack and my sadness overcome me. She listens with her full attention, like she often has in the 15 years I have raised my son. This time she says to me, “You always try your best as a parent. We all want him to get help and be okay.”   She pauses, then comes the next phrase, “I have no idea how to raise a kid like that.”  There lies the truth.

While I am comforted, I am alone again. But I am thankful that I have a family to talk to and understand.  There are many times that they don’t know what to do with my questions, my worries and most of my entire story.  But they listen and they care.  That’s a lot.

I arrive at the court promptly at 8 a.m. and go through the metal detectors.  My heart feels like it is in my shoes. Nothing feels good. Nothing feels right. Nothing feels helpful. This is what people who tell families to go to court to get help for their children need to understand:  it hurts, it’s frightening and it doesn’t make sense.

Finally, the courtroom is open.  The judge walks in and the moment is here. This is the time I have been dreading.  My son walks in behind a glass wall and with handcuffs and shackles on him. He is dirty, sad, and scared. I am a parent who can only look at her son and gaze into his eyes to show him I am there. My eyes well up and I begin to cry.  I see his lips moving telling me, “Sorry mom.  I am so sorry mom. I love you”. I believe him. He is sorry and he needs help. Jail no – help and treatment yes.

Moments later he is taken to jail to be held on a bail I cannot afford. I am alone, I am confused and I am struggling to be understood and listened to.  How can substance abuse, mental health and jail come together to support families and siblings? How can parents feel like they are not alone?

Time and time again parents have to search.  No one connects us – we have to find a community of parents on our own.  I found a wonderful organization, Justice 4 Families,  and wish I had found it sooner.  There are parents who have done this before you who can answer those questions. Parents need to know they are not alone.  There is a community waiting for them who can help them help their child, their adult family member and most of all, themselves. We all need support and someone to tell us, “I know what to do.”

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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