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Five things that parents need you to say

There are memory moments you take out, hold up to the light and bask in for a minute or two.  They give you a little spark of brightness, a lift or bump of energy.  Those are moments you hoard and take out sparingly because you know you’ll need them again.  You don’t want them to lose their impact.

When my son was nine, I had such a moment.  It was a particularly tough time when nothing was going right.  He was diagnosed with depression but the succession of medications made him wired, rarely sleeping, acting on nearly every impulse that crossed his mind.  I was taught behavioral strategies which were pretty worthless and the word “no” reliably caused meltdowns or worse behavior. I was tired, discouraged, often near tears and holding on with a grit-my-teeth determination.

During an appointment with his psychiatrist, my son flipped through every mood, touched everything in the office and was headed for a major outburst.  I don’t remember what I did – talking, rubbing his shoulder, bribing or distracting but it worked for a few minutes.  The doctor looked at him, then at me.  He said, “You two are a very good fit.  Your son is lucky to have you.”

I replayed those words over and over again that day and would take that moment and those words out and relive them over the years.  I never doubted them and felt more confident.  They always lessened my discouragement (at least a little) and became a kind of touchstone.  Every parent raising a child with emotional, behavioral and mental health needs simply should have one of those moments.  Two or three, or even more would be even better.

Many appointments are focused only the child or youth and have little time for conversation, except for giving directions for follow up.  Sometimes parents call, email, facebook or contact someone for help and the entire exchange is focused on problem solving.  We are all thinking about the needs of the child, not the parent.  We give lip service to the notion that a parent is the most important part of a child’s life, but that’s about all.

Parents raising children and youth with mental health needs have learned to take a smidge of encouragement and run with it.  It’s usually in short supply.  Whenever there is a chance, it’s important for all of us to hear these five things.

1.  Your child is lucky to have you. Parents hang in there and do the best they can. We are blamed, judged and excluded regularly and many times don’t feel lucky at all.  Our efforts go unnoticed though we are the ones dealing with the aftermath of the latest meltdown or shopping for a rigid eater or anticipating the next crisis.  Without our advocacy for services and school supports or our willingness to live one day or one hour at a time, things would be a lot worse.  It’s really nice when someone notices that.

2. It’s not you, it’s the system. Our children don’t get approved for services or we have no idea what’s available.  A program or treatment is stopped too soon or we wait for it forever.  We do our damnedest to parent well, to keep our child on an even keel and then the system simply doesn’t work the way we are told it’s supposed to.  It feels personal.  It’s nice to hear it’s not.

3. I like the way you said that. Parents often have a unique way of looking at things and they coin their own phrases or create funny names for things.  My son and I made up names for our pointer dog and she was the stand in for a lot of family jokes.  Parents shouldn’t need to learn jargon or acronyms (though most of us do) and we often use words that make things sound less intimidating.  Instead of talking around us or “above” us, appreciating our point of view is worth a lot.

4. You’re doing everything right, even if you’re not seeing the results. Thomas Edison, they say, failed 1,000 times before creating a successful light bulb. All the diets, discipline and many treatments we try often don’t work.  We take the blame on ourselves too often or wish we were better at this. We are often doing it right but the results don’t point that way.  It’s nice to hear it said out loud once in a while.

5. You’re doing a good job. It’s a tough job, raising a child with emotional or behavioral issues. People are quick to judge (why can’t you control him?) or offer platitudes (it’s only a phase).  There is still a lot of stigma out there around mental health issues and many parents feel it’s not getting any better.  Even professionals who say they are strengths based in their approach only offer suggestions or new things to try without taking the time to notice our good work and herculean effort here and now.

Parents are great at detecting what’s authentic and what’s not.  One of the reasons it meant so much when my son’s psychiatrist said he was lucky was because he truly meant it.  If you say one (or more) of the five things, you’d better really believe it .  On the other hand, if you truly mean it, it might be one of those moments a parent like me takes out when the going gets tough to cherish and make their day a better one.

 

Wide Open: Opening Up About My Trauma

I hear my therapist ask me “what was it that brought these memories back up?”

I think about it for a minute. These repressed memories of sexual abuse were bound to pop up at some point now that I’m being open about my trauma. I knew the answer within a minute or so. “I was making a timeline of the emotional and verbal abuse he put me through, and then all of these repressed memories I’d tucked deep down kind of popped up as I was writing.

In my lifetime, I have been sexually assaulted, as well as emotionally,verbally, and sexually abused in a relationship. I hadn’t found the courage to talk about it until about August of 2017. It started with me in the car with one of my best friends. We were talking about my ex boyfriend and the words came flying out of my mouth, the words I hadn’t been brave enough to utter before then. “He was emotionally abusive towards me.” Back then, although I didn’t admit the other abuses, I still felt so free. I felt like I could start talking. My friend hugged me and said, “I’m glad you told me. It takes courage.”

My openness took a break in November of 2017, though, when I got a new therapist. She was extremely rude and had a serious lack of knowledge in trauma and abusive relationships. She asked the question therapists should know the answer to; “why didn’t you just leave?” I already had doubts about her, but this is why I stopped seeing her. If she couldn’t understand that concept, she wouldn’t understand anything about me.

I was hospitalized in January of 2018, and had to address a lot of the trauma I had endured. I had to work through challenges, including flashbacks and panic attacks, and I made it. I got out and am starting to thrive. I have two jobs, and am learning the most important two words I need to know and practice the most: self care.

Self care is the most important thing I do for myself. I write about my struggle. I talk to friends and others in my support network when I feel low. And, I’m learning that I have to stop blaming myself for what has been done to me. I am not the deeds that have been done to me. No, I am much kinder. I am a giving person, and I need to work more on realizing I am not at fault.

If you are, or have been, a victim of abuse, please realize you are not defined by your trauma. You are not to blame for what happened to you. There are people out there who understand. There are people who can and will support you through this. You are so strong, and I am so proud of you for how far you’ve come.

If anyone you love is, or has been, a victim of abuse, please realize there are some things you shouldn’t say. Pay attention to triggers. Ask them what is not acceptable to say, and what their specific triggers are. And most importantly, please respect their boundaries. If they tell you they are uncomfortable doing something or are uncomfortable with what you are doing or saying, respect it. It is extremely important.

Our young adult blogger chooses to remain anonymous. They like to sing and advocate for change.

Children, suicide and race

When my son was 7, he tried to jump to his death.  He was climbing our stairs to a landing twelve feet above a tiled floor.  When he got there, he put his foot over the bannister and tried to launch himself into the air.  I was right behind him, grabbed him and yanked him back to safety.  As I held him he struggled, sobbing, “Let me go, let me go.  I want to die.”

My heart was pounding, time slowed and everything I saw and heard became sharper and more vivid.  There is no single word to describe how I felt.  It was some combination of shock, horror, disbelief, anguish, inadequacy and panic.  My young son, who until then had been school phobic with nightmares and sadness, had veered sharply into new, horrifying territory. It was his first suicide attempt, but not his last.  He got older and more sophisticated in his methods and I felt that combination of shock and anguish each time.

According to the Centers for Disease Control and Prevention, the suicide rate for children increased 64% from 2006 to 2016.  The rate for young children rose even higher. But the rise in suicides for African American children outpaces all other groups, rising 71% in the same time period.  Just like me, their mothers and fathers no doubt feel unprepared, in shock and disbelief.  We wonder how to make sense of this.

The Washington Post article, “He was happy. So far as I know” tells the story of 11 year old Rylan Hagan, an African American boy, who hanged himself last November. His mother found him and is devastated each hour and each day.

Rylan was loved, he had friends and did well in school and sports, even winning a trip to Disneyland that he never had a chance to take.  His mother is searching for clues she might have missed in the music he listened to, the video games he played and the movies he watched.  Once, when she asked him to do chores, he reacted emotionally, saying he wanted to kill himself. She wonders if she missed an important clue.

Parents look for answers everywhere after a suicide attempt and certainly after a completed suicide. Since we can’t look inside our children’s minds, we look at the things they surround themselves with, hoping to find leads.  We hope we will know it when, if, we see it.  A lot of the time, however, we don’t find what we are looking for.

Researchers don’t know why the rate of suicide for children has jumped and they can only guess why the rate of suicide for black children is even higher. They are alarmed by this spike and we should be too.  Researchers do suspect that racism plays a part as does an idea, a myth, that suicide is not a “black problem” and black children don’t kill themselves, says Rheeda L. Walker, a psychology professor at the University of Houston-Downtown. Myths like these mean that African American parents can be slower to get mental health care for their children.

Have you ever noticed that myths seem to congregate in groups? We believe groups of myths about food such as eating before swimming causes cramps and Twinkies don’t have an expiration date.  We believe clumps of things about animals including that toads cause warts or bats are blind.  People will still tell you that spicy food causes ulcers and carrots improve vision. No matter how often they are debunked, some myths seem to live on and on. If we believe one myth on a topic, we are more inclined to believe others.

We have a lot of myths about mental health, too, and they can encourage us to act or delay.  The one parents hear most often is that mental health issues stem from bad parenting.  Another myth is that mental health problems are a sign of weakness or only a phase.  Just wait, we are told, he will grow out of it. People will say with great authority, repeating common and false ideas, that therapy for kids is a waste of time and considering medication will lead to overmedicating. Just as people continue to believe that teaching sex education in schools leads to more sexual activity in teens, many also believe that talking about suicide will put that thought into a child’s head.  None of these myths are true.

Some of these myths are stronger and more persuasive for some groups of parents than others, but most of us buy into one or two.  No parent should be faulted for what they don’t know.  No one wants to believe that small people, children, can have big illnesses.  Unless you have a personal or family experience as a point of reference, myths guide us away from realizing what’s going on with our child. At least until it smacks us in the face.

Nikki Webber Allen created I Live For, a storytelling intiative to end stigma around depression, anxiety, and other mental disorders in teenagers and young adults of color.  When her 22 year old nephew took his life, Allen realized that remaining silent about her own depression had also robbed her of the opportunity to talk to him about his own mental health issues. Allen, an Emmy winning producer, is creating a documentary to tell the individual stories of people of color who have struggled with anxiety and depression.  She hopes it will help boost understanding and dispel myths.

When my son made his first suicide attempt, I looked for other parents like me.  They were very hard to find and in my search I was often met with disbelief that young children could be suicidal or depressed.  Even my son’s pediatrician and teachers were unhelpful, telling me I’d have a hard time finding other parents who were going through the same thing.  We need to find each other and tell our stories out loud. We all need to ask why suicide rates for children, especially African American children, are going up.  Parents are looking for answers. That’s what we do.

 

A Letter to Anyone Considering an Inpatient Stay

You are much stronger than you believe you are.

I used to see having a stay in a psych unit as a sign of weakness. To me, it meant you were no longer the kind of strong you thought you were. I guess in a way I was right. But when I say I was right, I mean that you aren’t the strong you once were: you are stronger. You’ve learned to accept that sometimes, you need to get away for a while, and take care of yourself. You’ve learned that accepting and receiving help for your symptoms isn’t selfish or some terrible thing. It means that you are taking necessary steps towards mental and emotional wellness. Take pride in that.

I just ended an 18 day stay at a psych unit. I pushed it off for so long, but the pain kept building up. The depression, anxiety, and unprocessed trauma constantly running through my mind were torturous. I was having nightmares. Night after endless night I’d wake up either in a panic, in tears, or both. That started leading to my insomnia. Not sleeping for days on end, terrified of what happens behind my eyelids. The depression and anxiety came crashing in, each day worse than the day before, due to the lack of sleep.

I felt out of control. My trauma had taught me that silence was my enemy. It taught me that I wasn’t worth much at all. Fortunately, I got to get a lot of my trauma out of my head, having been able to talk about my feelings every day. I was under constant monitoring, and although at times I hated it, this stay made me realize, even more than ever, that everyone deserves time to be human. That even those who put on a brave face for everyone else has to get the help they need.

Inpatient stays are scary. I’m not going to sugarcoat it. You have a lot of time to think. You have time to realize just how hard life has been lately. But you also get to talk through and process a lot of things you’ve been burying deep into yourself. Things you never thought you’d share, things you thought you’d take to the grave.

Not every unit is suitable for every kind of person. I personally loved the unit I was on (as much as you can love a psych unit), but not everyone there found it helpful. Regardless, you must try to trust the process. You must try to get the help you need, no matter who you work with. Advocate for yourself. Speak up for what you need, but also what your values are.

If you are currently struggling, I want to let you know that your feelings are valid. A lot of the time, we don’t hear that often enough. You have every right to be upset, mad, depressed, anxious, or tired. But I promise you, it can get better. You can find the light at the end of the tunnel of darkness you’ve been in for so long. It’s right in front of you. There will be obstacles. There will be barriers. But you are strong, brave, and resilient.

I believe in you, even if you are currently lacking the belief in yourself. Remember, an inpatient stay doesn’t equal weakness. It equals a strength that you never believed you had. And when you realize that, you have the power to accomplish your goals. I hope this letter has helped you. And I hope you realize the amazing things you are capable of.

 

Rachel is a young adult who hopes to someday become a peer mentor or a peer specialist. They are currently working on writing and publishing a book of poetry.

My grandfather, my son and the right thing

I was 9 years old when I noticed that my grandfather dropped my grandmother off for church services every Sunday but never went inside.  Oh, he went to church for weddings, funerals, fairs and Saturday bean suppers.  But he never once attended Sunday services.  My grandmother would say he didn’t like sitting in the pew or that she simply needed a ride.  I asked my mother about it, feeling a little anxious, trying to make it fit into my limited understanding.  “Your grandpa doesn’t believe in God,” she explained, “But he believes in Good.”

I sucked in my breath and my little-girl understanding shifted.  Until then, I had Good, God, having morals, doing good deeds and being a good person firmly super-glued together in my head.  You couldn’t have one without the other, right?  I began to understand the different shape of each thing and how they were not identical.

I saw in my grandfather, whom I adored, a warm, generous, very kind man who adhered to a strong code of conduct.  If you left a dime at his house, he returned it to you at the next visit. But he was agnostic, not religious. I noticed others who did the “right thing” every time, even when it was uncomfortable or a stretch for them, but they had beliefs about the world that startled me.  I gradually became comfortable with the idea that our inner guidance systems are unique and help us navigate the world in singular ways.

Many years later, this would help me understand and love my son during the hardest times.

My son was 7 when I realized that he saw and heard things that no one else did.  He was too old to label it magical thinking and his therapists and teachers were reluctant to call it psychosis.  What he saw and heard often scared him and that fear followed him all day, often even into the night, resulting in nightmares.  His fear, frustration and despair would overwhelm him and he would lash out or fly into a frenzy, hurtling objects and even hurting himself.  In those hours, he changed into someone else, shedding the things that gave him joy: his laughter, his creativity and his curiosity.

Sometimes the voices and visions told him to hurt his younger brother and I would hold him tight while he raged.  I would urge his smaller sibling to close himself in his bedroom, to be safe and out of sight. We did this again and again over the years, our family’s version of a safety drill.  His younger brother went from telling people that “I have a very, very good brother who does very, very bad things” to simply announcing that his brother was bad.  Very bad.  Once, when someone asked what his brother was like, he replied, “I have a bad brother and he is a very bad brother to me.” In his mind you couldn’t do such bad things and not be bad yourself.

It’s hard when you are in the midst of daily chaos to unstick the superglue that binds together your ideas about what children are like, especially your own children.  I thought children were naturally resilient, absorbing life around them, sometimes being silly.  That wasn’t my son’s life at all.  He was emotionally fragile, sometimes lost in his own world and unable to laugh. It was my job to untangle my assumptions and instead put in plain view the things I wanted others to see.   It was my job as a parent to paint that picture, showing the world outside my family that my child could be good and do bad things.  That my child had lots of moments where he was brilliant and vulnerable and caring.

He could be loving and smart, hold my hand, give great hugs and say funny things and still have moments and hours where he made me cry, made me angry and pretty scared for him.

There were no guidelines to understanding my son; I had to create my own.  I began to understand that while he did not always understand what was real, he could understand what was right. Even more, he cared about that. Often, after his rages and being lost in his phantasmic world, he would feel deep remorse.  (He was still unable to stop himself the next time though.)   His sense of what was right and wrong vied with the voices and destructive impulses.

When he was a little older, he announced he had made what he considered a better moral choice.  He began directing the raging and hurting only toward himself, sometimes viciously, sometimes persistently and away from his brother and me. His inner guidance system was trying to make peace between the storms in his mind and his sense of what was right.

We are all nuanced people with complicated beliefs.  It doesn’t get any better when you throw mental health issues into the mix.  On those parenting days when I came up for air, I would channel my mother.  I would talk about my son saying, “My son is not always sure what is real, but he loves knowing what is right.” Then I would add a story or two which showed the shape of our lives, hoping to unstick others’ ideas about good children and bad behaviors.