Tag Archives: parenting

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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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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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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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.

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