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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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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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I only forget the little things. More or less.

March 10th, 2019

“Oh, no!” I groaned inwardly.  “I can’t believe I forgot this again.”  The dentist’s office had just called to let me know that I was supposed to be there for my appointment.  I had intended to go, I’d even mentally reminded myself the day before.  But my son refused to get on the van for school that morning and it had been another horrible morning.  Until they called, the appointment had vanished from my mind.

This happened quite a few times when I was parenting during the really tough times.  While I forgot my own appointments from time to time, I was religious about taking my son to see his therapist and psychiatrist.  We were late a few times, but didn’t miss even one.  I might forget to pick up my allergy medication, but never forgot to get his prescriptions. I missed haircuts, the dentist and even vet appointments for my dog.  I would kick myself mentally and do better for a while.  Then my son would get worse and I’d forget once again.

One time, when my son was about six months old, I stubbed my toe and began to fall while carrying him outdoors.  I was walking on our scorching hot driveway in July and I frantically twisted my body so I would take the brunt of the fall. I crashed down but held him aloft the entire time.  I ended up with a badly scraped leg and elbow but he was just fine.  Forgetting my appointments but never his, was a version of this.  Keeping him safe, getting what he needed was the top priority.  Sometimes it was the only priority.

One day I came across an article about stressful life events which mentioned a stress inventory test.  Any article that had the word “stress” in the title drew my eye immediately.  According to the test, events that caused major stress included the death of someone close to you, going to jail or getting a divorce.  I also noticed that high stress events included happy things such as marriage or pregnancy.  Experiencing many stressful events resulted in a high score and a high score meant you were at risk for stress-related health problems.  Although parenting a child with mental health needs isn’t specifically on the list, items like change in financial state (check), increase in arguments about child raising (check) and change in health/behavior of a family member (double check) certainly are.  What happens, I wondered, when you get a really high score year after year after year?

Parents of children with mental health needs have a dark sense of humor and this become one of my go-to jokes.  “My stress points must have hit 1000 and it’s only March,” I’d say, or, “I’d like to get some points for a happy event this month.” A few times, I’d jokingly tell a friend that I was getting close to setting a record for stress points and I sure hoped I’d receive a great vacation instead of getting sick.  Neither happened.

However, I did get small, strange physical symptoms of stress.  A few times, I woke with my upper lip swollen like I had been stung by a bee.  It would usually go away by the next day. Another time or two, my eyelid would twitch on and off all day.  I was sure everyone else could see these strange twitches and swellings but for the most part no one really noticed.  I learned, however, to pay attention. If I didn’t, they came more often or lasted longer.

Caregiver burnout is when the stress of caregiving results in physical, emotional or mental exhaustion. But this catchy term doesn’t begin to describe the impact of raising a child with mental health needs.  Partly, it’s the unpredictability.  Each new medication might work a little, a lot or not at all.  Even worse, your child might have miserable side effects.  A new therapist might not click, might last only a short time or be wonderful.  Same with school programs, treatment protocols and hospitalizations.  Or even several of these things at once.  And, just when you think you have a thing or two under your belt, you find yourself with a new cast of providers, a new diagnosis or new behaviors you’ve never seen before.  You rarely reach a state of equilibrium.

Weddings, births, work changes and even mourning a death have different rituals attached to them to help you understand what’s happening and what to expect next. They may be stressful, but others have gone through this and tell you what to do and what to avoid.  For most of us parenting a child with mental health needs, there’s no marked trail.  If this were an item on the stress inventory test, it should be right up there with a weighty number of points.  It certainly had an impact on my memory and me.

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