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Falling through the cracks

March 10th, 2020
 

In my early teen years, I was considered acute, as I exhibited sudden onset symptoms of anxiety and depression with suicidal ideation. I was in and out of the hospital due to the fact that I was unable to ‘contract for safety’ – as they used to say.  Although those were some of the toughest years of my life, I had a vast team to give me a leg up when I was at my lowest- therapy, youth groups, a DMH support worker, a team at my therapeutic high school and my parents. I was very lucky to have a complete arsenal of support and resources to keep me from falling through the cracks.

I can’t say that I’m completely without support these days, either. I still see the same therapist I started with 17 years ago and I have friends and family who know that I struggle from time to time and graciously still love me when I become symptomatic. For the most part, I can say that the good days outweigh the bad, and when they’re good, they’re really good. I can function without using up all of my spoons, and I genuinely enjoy life. That being said, when the days are bad, they’re the worst. The bottom line is, I live with depression and anxiety and even though I can get through my day, I’m not doing it without a substantial amount of stress and worry.

Now, when I’m at my lowest, I don’t typically utilize my natural supports. I never want to feel like I’m a burden to others, but I know that I usually need to reach out for help. Once I’ve realized that I’ve reached the bottom of my pit of despair, I know that it’s time to claw my way out again, and I try to utilize resources. Unfortunately, they seem to be few and far between for people like me. Whenever I make a real attempt to better myself, I always end up feeling spurned and unheard. I’m just going to come out and say it; there aren’t enough resources for folks who present with ‘high functioning’ mental illness. I use the term ‘high functioning’ loosely, of course, as no one’s mental health journey is linear.

When I go out of my way to access services for myself, I’ve been told that I present as a bright, well adjusted adult who has her life together, which gets me nowhere. Because I can speak ‘eloquently’ and have the ability to advocate for myself, I’m often turned down for support. A few years ago, I was having an incredibly hard time finding a job due to high levels of anxiety. I made an appointment with an agency that helps folks with disabilities gain employment. They refused to appoint me a job coach, and instead offered to send me to school- they didn’t believe I was “mentally ill” or “disabled” enough. This has happened every time I’ve looked to any agency for help.

This is happening to a lot of young adults who live with high functioning mental health needs. We’re being shifted aside because our symptoms aren’t severe enough. We’re not being made a priority, and we’re not getting what we need to fully succeed. In the long term, that sets us up to fail. When we’re not getting the support we need, our ‘milder’ symptoms slowly get worse, and are significantly less functional. Only then do we qualify for the services that we were asking for in the first place. We have to take two giant steps back in order to take one step forward.

I want to succeed. At work. At home. At life. I know I can. I’ve come a long way from the young girl who was told she’d spend the rest of her days locked in a psychiatric hospital. That doesn’t mean that I don’t need help for my mental health needs. If anything, I need accessibility in order to reinforce my stability. I don’t think that’s too much to ask for.

Chandra Watts is our guest blogger. She is our Youth Development Specialist and draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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Why are there morphing diagnoses in children’s mental health?

February 13th, 2020

My son’s first diagnosis was dysthymia.  Not ADHD, which is a common first diagnosis nor the often-thrown-around “behavior disorder.” Dysthymia sounded serious and solemn.    I had to look it up to find out what it meant, which was milder, less severe depression.  It was kind of a dud diagnosis and it didn’t open any doors for help.

It soon vanished as others were piled on.  Some I understood immediately. School phobia was a no brainer for a child who was terrified to leave the house.  Depression, too, was an obvious one for a child who talked about dying and wept with despair.  But others seemed tacked on just to explain symptoms that appeared.  Oppositional defiant disorder for those times he would scream ‘no!’ and refuse to do anything.  Obsessive compulsive disorder for his need to talk nonstop about dinosaurs, video games or other things he loved and his insistence on a rigid bedtime ritual each night.  A year after I first heard “dysthymia” he had 7 diagnoses.  He was only 8 years old.

I call this the morphing diagnosisMorphing is a special effect in motion pictures and animation that changes one image or shape into another.  My son’s diagnoses did that – they morphed from one to another while he stayed the same underneath.

What’s wrong with him? people would ask me.  “Well….” I’d start, not having a clear and catchy phrase to use.  I’ve spoken with other parents and they’ve rattled off the list of their child’s diagnoses, only possible after taking a deep breath. That wasn’t me.  I knew them all.  But saying how it started with dysthymia and we are trying out mood disorder right now seemed like a conversation stopper.

I was polite and asked the psychiatrist, hospital, evaluator and therapist to explain this pig pile of diagnostic labels.  One said, “Children can’t tell us what’s going on inside so we diagnose based on what we observe. If a child’s behavior is complicated, we use more diagnoses.”  Another told me that certain diagnoses make others more likely, so they look for those that go together.  Like fair skin and sunburn, peanut butter and jelly, bad breath and cavities? I wondered.

When he was 10, someone added ADHD in.  He’d already had a sleep disorder thrown in.  I shook my head in disbelief and threw up my hands.  By then I was feeling discouraged.  Was it true that the more diagnoses my son had, the worse off he must be?  Some of his diagnoses were overlapping or seemed repetitive (how many mood disorders could he have?). And the more diagnoses, the harder he appeared to treat. And the easier to refuse a bed to, or a service or a school program.  He and his diagnoses didn’t match up to anything.

Turns out they were circling around the big league diagnoses.  Bipolar disorder.  Psychosis.  Schizoaffective disorder.  And no one wanted to apply them to a young child.  So the diagnoses kept getting heaped on with none of them being eliminated.

When he was 12, something wonderful happened.  His psychiatrist looked at his multiple, unhelpful diagnoses and suggested a new way of sorting through them. What if we used a kind of bucket system?  My son had attention problems, sleep issues, massive anxiety, moods that rocketed around and thoughts that were bizarre and got in his way.  So instead of sorting through the diagnoses, watching one blur into another, we began looking at distinct categories.

Each visit we’d talk about how the medications helped his attention or mood.  Or didn’t.  At school, we’d look at whether his rituals had decreased or not.  At home, I’d note if his thinking was pretty off the wall or more organized.  I’d watch to see if his weird food rituals or off kilter sleep cycles had improved.  I stopped labeling any of it.  The buckets stayed fixed.  They didn’t change.

When he was sixteen, he got one of the major diagnoses.  I found that the large diagnoses are often like a big tent and many of the smaller diagnoses belong under it.  My son’s anxiety and the rituals he used to control it went under that tent.  So did his erratic sleep patterns.  So did his complete inability to pay attention for blocks of time.

He didn’t get better from any of the many diagnoses that were slapped on him with each new therapist and each new hospitalization.  He wasn’t cured and suddenly got hit with a major new diagnosis.  He’d had that illness, though not the diagnosis, all along.  No one had wanted to attach it to a child.

Some families get lucky.  Their child’s diagnosis morphs into something smaller.  Or it morphs away.  But for many of us, we get acquainted with diagnosis #1, become expert about it and think, okay, I can deal with this.  Then diagnosis #2 and #3 get slapped on.  To help our child, we learn and become knowledgeable about each diagnosis. It’s great information to have if you are talking to your insurance company or trying to qualify for certain services.  But it’s a slippery thing.  Sooner or later it’s going to morph.

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Suicide as a Human Right: What We Can Do to Support Folks Who Consider Suicide

January 20th, 2020

We live in a world that is inherently traumatizing. There is no life on Earth in which trauma does not exist within. There are people murdered everyday, there are people dying that have no food, fires spreading and killing entire towns of people and wildlife. In a world in which things like this happen multiple times a day, it is impossible for me to blame people who want to kill themselves.

When I say I cannot blame anyone for having the urge to die, or for choosing suicide over living, I am not saying it doesn’t break my heart. I so heavily relate to the feeling that not being alive would be an upgrade from living on this planet.  What I am saying is that suicide is, and should be recognized across the board as, a human right. No one chooses to be brought into this world. Who is to say that we don’t maintain the right to live, or die, on our own terms?

My issue with most “suicide prevention” organizations is that suicide always being an option is not openly spread to folks. What is pushed instead the statement “You don’t want to die, you just want to escape your pain,” which completely negates the fact that for a lot of folks, life is pain. There are many folks who actually want to die, and telling them they don’t simply invalidates their experiences and shuts them off to discussing how they really feel.

What the organizations who push the message of preventing suicide should be saying is something to the tone of “Suicide is always an option, and we should not blame or shame folks who choose to die on their own terms. There is something very powerful, however, about knowing the option is always there, but choosing to live despite.”

No one wants to feel like they cannot escape. A statement I also disagree with spreading is “Everything gets better. Give it time.” That is a dangerous assumption, for unfortunately, lives can and do get worse for some folks. Sometimes escaping abuse, neglect, or your own demons just simply doesn’t happen, and it is unfair to tell people that they don’t have the power and the option to leave.

I’ve lost two of my best friends to suicide. Both under the age of 22. And as much as it hurts me that they are gone, and I miss them every day, I cannot get behind making people stay alive for the comfort of others around them. People say “you have so many people who love you” but when you grow up in environments in which it is ingrained in you that you shouldn’t love yourself, it makes life very difficult. I tell people often I want to stop living for others and start living for myself, but as someone who has endured lifelong trauma and degradation, it is still such a challenge to even like myself.

I’ve been fighting hard to love myself, and to put myself first. I know so many other people who are too. Since we live in a society in which, the vast, vast majority of folks have been taught that they are not good enough, through actions and through words, it is hard sometimes to believe anyone can love themselves.

Trauma is a human trait in which all of us have a piece (or 5) of. Instead of shaming folks for leaving, a better idea, a healthier idea, is to acknowledge trauma as a uniting force, and well as a systematic failure within all systems that need to be broken down and rebuilt.

 

Maxxwell LaBrie (pronouns: they/them/theirs) is a young adult whose passion for peer advocacy and youth voice fuels their dedication to writing. They are a psychiatric survivor and a certified peer specialist who thrives to support young adults in all avenues and through any struggle they face. They also serve on the Youth MOVE National Board of Directors.

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You can’t unsee, you can’t unhear and you can’t unparent

December 30th, 2019

“I treat all my children the same,” my friend said to me.  “There’s no difference.  I don’t have favorites and what goes for one, goes for all.”  I held my tongue, but inwardly I winced.  There is not a chance in hell I could do that, I thought.

I didn’t always think that way.  The myth that we treat each child the same way as the other ones has a firm hold on many of us.  We see ourselves as fair, dispassionate dispensers of goodies and discipline.  What’s more, we think that if we parent in an undifferentiated way, we have taught our children fairness, equality and some sort of justice.  It’s hard to let go of that idea.

And then you have a child like my first, the one with outsized mental health needs.  I had to parent him in a way I never imagined.  And when his brother came along, I just kept on doing things the same way.

For starters, my oldest son couldn’t soothe himself from day one.  Oh, he tried.  He sucked his thumb well into childhood.  He didn’t give up his teddy bear until almost middle school.  But that was for the small hurts.  If something sent him into a tailspin, including yelling or anger, he couldn’t get back to calmness by himself.  There would be a meltdown or a long, shuddering crying jag until he exhausted himself or I sat with him, often for a long time and talked him through it, guiding his mood and thoughts away from anger and pain.

When he was older, the meltdowns could lead to self-harm.  Taking a tough stance, yelling or even a firm voice often led to him bruising, scratching or cutting. It reduced the pain inside, he’d later explain. That sure put a stop to a bunch of tactics.  The point of setting a limit or giving a consequence is never to increase the odds of self-harm.

He was also impulsive and couldn’t apply what he’d learned in one situation to the next.  When we went to Target, I’d have to lay out the plan in advance:  we are buying this, you can have gum (or not) and then we are going home.  Things needed to be predictable, we couldn’t mix things up.    I could never ask, “What shirt/socks/sweatshirt should we buy?”  Having lots of choices kick started his anxiety.  Instead I’d say, “I like the red one and green one.  Which one do you like?”  And if that worked at Target, we’d have to begin all over again in the grocery store.

None of these things were true for his younger brother.  Sure, he would cry or have the occasional temper tantrum as a small child.  But they lasted a short time and they vanished as he grew older.  He was confident about trying new things.  Once, I remarked in wonder to a friend that he had no problem choosing a t-shirt.  She said, “That’s what’s supposed to happen.  That’s what regular kids do.”

But I approached parenting him using the lessons I had learned with his brother.  I didn’t know how to unparent.  I couldn’t unlearn the way I’d learned to parent already. I didn’t know how to wipe clean the experiences I’d had with his older brother. I usually gave him two choices when picking out shirts.  I was careful to set limits in a way that didn’t trigger a tantrum.  I over-explained.  I drew a map of how our excursions would go.   Maybe it didn’t hurt him, but he didn’t need it.

Like many parents, I drew on how I was raised, remembering how my own mother did things.  Problem was, my older son wasn’t like me, so that was a bust, though later I circled back to those strategies for son number two.  As a child, I picked up on the nuances and followed the rules without complaint (for the most part).  I didn’t need things spelled out and navigated childhood pretty well.  One parent in a support group I led was the same way.  Her daughter had changed in one year from an easy going, high achieving teen to one whose default setting was defiance.  She told this story to our group and said, “My mother used to say, ‘someday you’ll have a child just like you.’  I only wish I had!” I felt the same way.

A friend of mine used to say that we raise only children these days, no matter how many siblings are in a family. The way it used to be, she says, is that the Jones kids would all be in choir and the Smith kids would get swimming lessons.  It was a lot easier on parents who do the scheduling and shuttling.  Now, one child takes guitar lessons, another goes to art class and a third plays soccer.  She’s right, we encourage our children’s individual interests and passions. Maybe that’s what’s fair and equal.

Being a parent is a hard job.  Parenting a child with mental health needs is 100 times harder.  Each strategy we find that works, we hang on to.  Each routine that makes things a little easier, we incorporate.  Every unorthodox approach and each new way we phrase things is our new way of parenting.  Maybe we shouldn’t unlearn them.  We worked hard for them.

 

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We always wonder why

November 19th, 2019

Nobody talks about wanting to die. There’s a dark stigma around it, like it’s a contagious disease. It’s as if by talking about it, we have something to lose, when in reality, if we don’t talk about it, we’ll continue to lose many lives. We’re always surprised when somebody dies by suicide. We wonder where the signs were, we wonder how no one noticed something was off. We wonder why. We always wonder why.

Some days, I wake up and the thought of having to go through the motions again become almost unbearable. Get up, shower, try to eat breakfast, go to work, try to have a social life, go to bed and think about how much I don’t want to do the same thing day in and day out for the rest of my life. It all seems so tedious – especially when I’m also dealing with constant anxiety and treatment resistant depression.

There are even days when I just want to die. I’m not saying that I’m suicidal. I don’t have a plan of action. I haven’t written my final goodbyes. I’ll be honest – I don’t even think I could bring myself to do it. The thought, though, is almost cathartic in a way. It’s like looking forward to taking a nap after you’ve woken up too early for a breakfast party that you didn’t even want to attend in the first place. When I’m at my lowest, I constantly think, “I didn’t want any of this. I didn’t ask to be born.” Often, I’d rather face the pitch black of uncertainty than deal with being depressed and crying myself into an uneasy sleep night after night.

I’m finding that this is a fairly common train of thought – especially in my peers. We’re exhausted, overworked, underpaid, unfulfilled, overmedicated, undermedicated, stressed out, angry and depressed. There’s not enough time in a day to get everything one wants and needs done. By bedtime, we’re so frazzled that we’re overtired, our thoughts going a thousand miles an hour, with nowhere to go except around and around. That’s not good for anyone’s mental health, and it can seriously start to bog anyone down. I can’t tell you how many of my peers have ‘joked’ about killing themselves just to ease the stress of living. Maybe the thought of suicide hasn’t been in the forefront of their minds- but it’s definitely there.

When you type ‘not suicidal’ into the Google search bar, the first three suggestions that come up are:

“Not suicidal but tired of life.”

“Not suicidal but wouldn’t mind dying.”

“Not suicidal but wanting to die.”

This tells me that there are a lot of people, like me and my peer group, who are feeling the exact same way. It’s comforting, knowing that I’m not alone in my existential dread, but it’s also concerning. As a nation, we’re still not talking about suicide, and we’re certainly not addressing mental health. Not to mention that treatment for anyone who’s considered “high functioning” with mental health needs is almost non-existent for young adults/adults. Most of my friends hear the same script from their providers, “Okay, you’re depressed and having some minor suicidal ideation… but you’re out of bed, you’ve combed your hair, ate half a piece of toast, and you’re going to work still… so I’m going to prescribe you this antidepressant that’ll make you groggy and confused when you wake up, and let’s see how you’re feeling in a month!” Are we supposed to take that seriously if they’re not taking us seriously?

I don’t know how we fix this. Maybe we don’t. But! We can make it better. We start by having real, open and honest conversations about wanting to die, and we stop judging people and telling them that they’re weak. We start listening and stop threatening to send someone to the hospital every time they curiously utter the word ‘suicide.’ Be a friend. Be kind. Be supportive. Now, if you’re thinking that you can’t do this alone and you’re afraid to talk about it, don’t worry. I’ll start the conversation – my name is Chandra, and some days, I want to die.

Chandra Watts is our guest blogger. She is our Youth Development Specialist and draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

 

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