Tag Archives: Children’s Mental Health

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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Authentically me. Just not the old me.

May 27th, 2019

When I was a teen girl and trying on different personal styles and demeanors, I admired my best friend’s mother extravagantly.  She was an artist, tall and slender, gracious and thoughtful.  Their family dinners were beautifully plated and elegantly presented (before that was a “thing”) and their home was filled with artistic and unique objects.  I wanted to absorb all of it through my pores and become more like her. That’s who I’m going to be like, I would tell myself.

I grew into my later teens and young adulthood, borrowing from many styles and ways of moving through life.  I would read about women who made a difference, who created worlds through their writing or, through their art, changed how we saw things.  I would grab a little of this and that and make it mine.  I thought I was pretty happy with this 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.  The me I had carefully crafted didn’t really match his needs.  He needed a different version of me.

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 looked around for new role models.  I would watch a veteran parent do a training on special education and note that she wore serious but casual clothes in somber colors, unlike my pastels. “Do they take her more seriously at school meetings?” I wondered. I listened to national parent leaders who challenged others to stop using adult language to describe children like my son.  Even better, they insisted that we all stop using words that blamed or disrespected parents. I watched amazing parents stand in front of a crowded room and tell their story and cry and rant and cajole and pull the crowd along with them.  They put on full display feelings that I was feeling too, but shied away from showing in public.  I listened to champions for children’s mental health who were pushing the state systems they worked within to make changes; they were the insider advocates, feisty one day and implacable the next.

I found out an important thing from trying on – often silently – the characteristics I knew could serve the new me.  It has to be authentically you, even though it’s not the old you.

Self-help books will tell you that to change yourself you have to change your life.  If you change a habit, like going to the gym or saving money, you can then change yourself.  You go from being a person who doesn’t exercise or save your money to one that does.  The change happens from the outside in.

Just the opposite happened for me.  My life changed whether I liked it or not.  It certainly wasn’t deliberate or selective. My son was an almost-typical little boy and in a very short time turned into a boy who had meltdowns, panic attacks, regular nightmares and talked about dying.  I was the same person inside except I was freaked out a lot of time, full of self-doubt and overwhelmed.  And suddenly ineffective.

The deliberate self-help model also incorporates the luxury of trying again and again.  If you don’t go to the gym this month, maybe next month you can take up running or yoga.  I usually felt that I didn’t have that luxury.  If something didn’t work, I was making mental changes on the way home.  Sometimes I was tossing out the old, even as I walked out the door from a meeting about my son. I went back to my teenage ways and tried on different characteristics and at times, personas.  I was firm, I was persistent and often, much tougher.  When I didn’t have it in me, I simply channeled those veteran parents I had watched and listened to.

After a few years, I became the parent leader others viewed as a model for themselves.  Once, when I was leading a support group, other parents asked how my special education meeting had gone that week.  My school district had agreed to an outside placement with the entire team, then had secretively started sending packets to inside programs.  I wrote a few emails pointing out that this was flouting special education law and copied several people up the chain.  At the next meeting, I steeled myself to not smile, not to nod and be aloof and formal, which was something I could not have pulled off just a few years earlier. I channeled a tougher, stronger version of me. When the special education person smiled at me, I remained unsmiling.  When she leaned across to touch my hand, I pulled it slightly back.  When she asked if there was something wrong, I told her, knowing she had read the emails and had a pretty decent idea of my concerns.

I looked her firmly in the eye and said, “My son needs us all to stay with the agreement for placement.  I am counting on you and so is he.”  When I told this story, one of the parents at the support group listened and said, “I didn’t know you could talk like that at a school meeting.”  She took it and ran with it, however, becoming a firm, serious, unemotional, strong parent at her daughter’s next school meeting.  We both got the services our children needed.

Sometimes I still miss the old me, the one I crafted so carefully.  She saw the world as a kinder one and was more patient in waiting for things to change.  Then I think of those veteran parents who insisted on respect for parents and to take them seriously.  I remember the ones who laid their stories, their sorrow and hope, out in full view, believing their stories would power change.  And I consider the old me and whisper, “Nah.  I’m good.”

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Therapeutic relationships and 4 therapeutic pearls of wisdom

May 7th, 2019

“He shares things with you,” the therapist groused, “that he should be talking about in therapy.”  It was true.  My young son often told me things that were on his mind or that caused him pain or fear when we were alone in the car, sometimes on the drive to therapy.  There was something about the combination of road noise, looking straight ahead and knowing the trip would soon end that worked for him.  Sometimes things would spill out and shortly after, we’d reach our destination.  He’d be done and would have no desire to bring up whatever it was again, in therapy or elsewhere.  I described this to the therapist then added, “Maybe you should get two parallel car seats in here. It seems to be a key ingredient.”

What I couldn’t explain was that my son was simply unable to form a therapeutic relationship with anyone.  He would like them and talk about ordinary things, like a television show or favorite food, but that was all.  It wasn’t just that I was his mom and he already had a relationship with me — though that helped — but he didn’t have the bandwidth. He was so overwhelmed with jagged emotions and racing thoughts that he couldn’t process much and was only able to share things in short spurts.  Any longer and he was uncomfortable at best and feeling pained at worst.  He had no fertile space inside to grow a relationship.

Sure, I had lots of little “tricks” up my sleeve. I knew just how to touch his shoulder to redirect him when he was obsessing.  I knew how far to move into his space and what words he could hear in a neutral way.  But what the therapist wasn’t seeing was my son’s inability to form that relationship on anything but a superficial level.  It wasn’t until years later, when someone explained what a therapeutic relationship was to me that I could help nudge my son in that direction.  Just like I encouraged other relationships he had trouble navigating.

That’s how I learned what a therapeutic relationship was and how my son could benefit from it.

There were other pearls of wisdom that his therapists gifted to me over the years that helped enormously.  I’d like to share four of them.

Pearl #1.  When my son was about 8 or 9 and couldn’t explain how his meltdowns happened or how he felt afterward, his therapist told me that at about age 14, children develop the ability to observe themselves and the things around them in a new way, sort of like young journalists.  They can describe and report as if they are watching themselves.  I waited for that day, believing it would make a difference.  It didn’t come in a flash rather, more gradually, but it was there.  What’s more, I could actually see it happen.  This new ability didn’t calm or make sense of his feelings but gave us all a much-needed window on them.

Pearl #2. During another period, when he was in middle school, he became more explosive each week.  One day, his 10-year old brother had had enough of the safety plan where he removed himself, getting out of the path of the storm.  Instead, he provoked the confrontation he knew was coming and it got physical before I could get between them.  In family therapy that week, I despaired, “I don’t think they will ever be able to simply be in the same room with each other.”  The therapist commiserated then offered this: “Your son does pretty well with adults and not as well with children.  When his brother is an adult, they will probably be able to restart their relationship on a positive note.”  Part of me was disbelieving – she didn’t see the horrible fight! – but part of me held on to that idea with both hands.  It turned out to be true.

Pearl #3. A couple of years later, still during middle school, we went through a tough period of medication trials, dosage changes, weaning off and still more trials.  My son had never been on a medication combination that worked well, but until then he’d had periods where his symptoms had lessened, his sleep or focus or moods had improved.  I filled out charts, trying to track whether his mood swings had slowed or his suicidal thoughts had abated.  I concentrated on the medications wondering about their direct impact.  As his medication trials seemed to offer hope, then withdraw it, my hopes soared and crashed as well.

Of course, I kept his therapist in the loop.  One day she remarked, “Medication is intended to be an adjunct to therapy.  In the best of worlds, it calms the mind, sharpens the focus, evens out the mood and helps people be more available to therapy.  So that therapy can be successful.”  I looked at her, light bulbs turning on above my head.  Until that moment, I had measured the success of medication by the relief of my son’s symptoms and hadn’t given this much thought.  Now I did.  When I explained it to him, he got it, too.  I changed my thinking about medication that day and it stayed changed.

Pearl #4.  My son was a little boy, a first grader, when he first blurted out that he wanted to die.  I was horrified and hoped never to hear it again.  But I heard  it again a couple of weeks later.  Soon he said it almost every day and also developed crying jags, meltdowns, nightmares and phobias.  I longed for a day, just one, when he wasn’t sad, scared, angry or unpredictable.  “How do we cure him?” I asked his therapist.  “How do we make him better?”  “It works like this,” she told me.  “We find treatments and things to do that make the outbursts less intense.  We give him care that makes the sad or angry times farther apart.”  I had a difficult time letting go of the idea of a cure.  I wanted to see him not just better, but all better.  But I learned to be glad to see the time between meltdowns grow – even if at other times it collapsed again.  I watched for days when he was less sad and less fearful of a million different things.  I adjusted my idea of what progress looked like.

It wasn’t until he was older and experienced less emotional chaos that my son could form a therapeutic relationship.  But I did.  Sometimes it was his therapists who guided my thinking and coached my approach to him.  Maybe that was just as important.

 

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