Don’t call me an enabler. Or anything like it.

August 24th, 2018

Let’s talk about enabling.  Or rather, let’s talk about being accused of it. Happens quite often to parents like me.

The first time I ever heard the word “enabler,” and later its sister words co-dependent and over-controlling, was early in my son’s mental health journey.  He was doing progressively worse each day, exploding over minor things, threatening to hurt himself daily and I went looking for support and help.  I made a long series of calls and finally got what I thought was a sympathetic and wise person on the phone.  She listened, asked a few questions, then pronounced that I was an enabler.

My son was 7 years and, as it turns out, about to have his first psychiatric hospitalization. What I needed was help, not a label.

It also turns out that she knew diddly squat.  It took me a while to figure that out.  I took that word out and turned it over and over and even shook it a few times to see if it would change into something else. It didn’t.  It stuck in my mind, adding to my doubt in those dark moments when I wondered if I could parent my son with his enormous needs.  It undermined my pleasure when I found a moment, all too rare, when I sat with my son and we both enjoyed the moment, the hour or the afternoon.

About a year later, I found a group of parents who all had children like mine.  Some had teenagers (and their stories scared me), some had girls, some were strict and some weren’t.  At a meeting, I told my story of the phone calls and being called an enabler.  They laughed, they scoffed and they said it had happened to them as well. I felt a weight lift and some of the guilt leave.  I wasn’t ready to laugh along with them though.  The woman on the phone had been so certain.

What I had started to do from the very beginning was use a mashup of techniques that actually work for those of us trying to parent a really challenging child.  I was letting behaviors go that weren’t absolutely necessary to deal with right then and there. I was trying in a thousand ways to accept and support a son who the world was rejecting when they saw him in his bad moments.  I was adjusting to our new normal. The lady on the phone asked me what I did when my son had meltdowns and I told her I was letting the unimportant go and accepting my son no matter how he behaved.

When you parent a child with mental health needs, you are very focused on finding what works for your child.  You can’t afford a lot of trial and error and it may look controlling when you say no to things you’ve tried before or you just know are unlikely to work.  You also learn how to manage the details.  My son would have a meltdown if we walked through a store with images of zombies or monsters on t-shirts, DVD covers or books so we got good at avoiding those sections.  Sometimes his younger brother would walk 10 steps ahead and turn over the images so we could only see the backs of those items.  Yep, you bet we controlled the environment and even where he walked sometimes.  We made it easier on him, but also on us.

Enabling is described as excusing, justifying, ignoring and smoothing things over for a person who is addicted, has a mental illness, has out of control gambling and so on.  The enabler thinks things like, “If only I can keep this person going through their current crisis, it will buy us another day.” If I had been asked if that definition or self-talk fit, I would have raised my hand in a heartbeat.

When I stopped talking (much) about the details of my son’s life to people who didn’t know us, or had little expertise in children’s mental health, I stopped hearing words like enabler. The therapists, psychiatrists and special education teachers who had experience with mental health issues in children simply got it.  They were using the same techniques I was and comparing notes with me.  My hard won knowledge and experience in what works were seen as just that – expertise.

I’m pretty sure, however, if I looked at the notes from the early IEP meetings or therapy visits, I’d see a word like enabler in there somewhere.  And that’s the problem.  Those words get put in the notes and the next person sees them and maybe wonders or believes it to be true. One casual observation from someone who has a little knowledge and more judgy-ness can have an outsized impact.  So, please don’t call me an enabler.  You’ve got that wrong.

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Five things that parents need you to say

July 16th, 2018

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.

 

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Wide Open: Opening Up About My Trauma

May 10th, 2018

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.

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Children, suicide and race

March 19th, 2018

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.

 

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A Letter to Anyone Considering an Inpatient Stay

March 5th, 2018

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.

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