Category: Navigating “the system”

Open letter to a therapist from a mom of a child with RAD

Dear Therapist,

I am desperate for your help. I apologize ahead of time if I seem angry and defensive. I’m just burnt out and afraid you won’t understand. My son is completely out of control and nothing works.

I’ve tried to get help before from therapists and teachers, even police officers, but no one understands. They all think I’m exaggerating, or maybe even lying. My own mother says, “He’s just a kid,” and can’t understand what I’m dealing with is way beyond normal, way beyond safe, and way beyond what I can handle. My son went through trauma at a young age and has been diagnosed with reactive attachment disorder.

I’m not exaggerating when I say my son screams for hours. He’s torn his bedroom door off the hinges and put holes in his walls. His siblings are afraid of him. Sometimes I’m afraid he’ll burn down the house when I’m asleep.

When you meet my son, he’ll look like a very different child than he is with me. You’ll think I’m overreacting. I’m not. You see, my son is an expert at triangulating the adults around him. Due to his early trauma, he manages his surroundings and the people in them to feel safe. In doing so, he’s good at making everyone think I’m mean and crazy. Sometimes I start to believe it too.

I have a secret I should probably share with you—it’s true that I’m not perfect. I’m very aware of that fact. I’ve screamed at my son and lately I’m always angry and frustrated. I’m afraid to tell you this because you’ll think I’m a bad mom and blame me for everything. Most people blame me for my son’s problems. Yet, I’m the one person whose life has been turned inside out and upside down to try to help him.

Even though I’m not a perfect mom, I’m still a good mom trying my best. Click To Tweet

I’ve turned into an unhappy, negative, impatient person whom I don’t even recognize anymore. Sometimes I wonder if I have post-traumatic stress disorder, but feel stupid suggesting that dealing with a child could cause PTSD. It would be helpful for you to encourage me to get some therapy for myself.

Even though I’m not a perfect mom, I’m still a good mom trying my best. Before we get started, here’s what you need to know (because my son will tell you otherwise):

    • I feed my son three meals a day, plus snacks.
    • I don’t hurt my son.
    • I’m not the one who rips up his homework and throws it away.
    • He locks himself in the closet under the stairs. I don’t and wouldn’t ever do that to him.
  • Our house isn’t haunted, he’s not best friends with Justin Bieber, and he’s not going to live with his birth mom next week.

My son will tell you things in individual therapy that will take up all of our time to untangle.

In the meantime, we’ll be distracted from working on the really serious problems for which we need your help. This is why I’m going to insist on being present during all therapy sessions. Please understand it’s not because I have something to hide. I just want to keep things from getting worse than they already are.

Typical parenting strategies like sticker reward charts don’t work for my son. We’ve already tried all sorts of behavior modification strategies. I can’t ignore my son’s negative behavior either. I can’t just watch him hurt himself, his siblings, or destroy everything we own.

Please understand, our family is in crisis.

This is an emergency. We need help and we need it fast. That play therapy you do in the sand…I don’t know, maybe it works for some kids–but not for him. I’m not trying to be unreasonable; I just know what doesn’t work. If you don’t have experience working with trauma-exposed kids, please refer us to someone who does. I understand this is a very specific and serious issue that not all therapists have expertise in.

I’m willing to do whatever it takes to help my son heal and to fix our family. Please help us.

Sincerely,

Keri

Originally posted by the Institute for Attachment and Child Development.

Mental Health workers are burnt out

Mental health “workers” are chronically overworked, underpaid, and not appreciated. “Workers,” given a variety of job titles, are the day-to-day staff who work in group homes and residential treatment facilities, and provide some in-home services. Unlike licensed clinicians and supervisors they’re in the trenches with us and our kids. They’re often just as exhausted as we are.

It’s a sad truth we must face: even the most well-intentioned worker doesn’t have the capacity to give our child the quality care they otherwise would if they're burnt out. Click To Tweet

A few summers ago Natalie (not her real name) was one of our Intensive In-Home services workers. She was absolutely wonderful and dedicated to our success. She was on call 24-7 and when Devon flew into a rage she would hurry over, once rolling straight out of bed in her pajamas. “You go on and do your stuff,” she would say waving me away. “I’ll take care of him.” Natalie knew how much control Devon had over our family during his rages. It was debilitating, keeping me from my job and Devon’s siblings from soccer practice. Natalie was determined to put a stop to it. Day-after-day she spent hours shut in the garage or a back room with Devon while he screamed and raged.

While this respite breathed some life back into me, Natalie burnt out before my eyes. She was working 60+ hours a week plus taking paperwork home every night. Her employer was sometimes ‘late’ on her paychecks and she was over loaded with clients. 

It’s a sad truth we must face: even the most well-intentioned worker doesn’t have the capacity to give our child the quality care they otherwise would if they’re burnt out. 

Here are some ways you can counteract mental health worker burn out and make sure you child receives the highest quality of care possible.

Be Kind–Be polite. Often these workers can’t control the things that are upsetting you so it’s unfair to yell at them. Compliment them when you’re impressed with their work, or even just to tell them you like their new haircut. Offer the in-home workers a cool drink and snack. It is these in-the-field, on-the-ground workers that can make a huge difference in the quality of services your child receives so investing kindness is well worth it.

Do Your Research–Carefully research the agencies you receive services from. In most cases, the ones that can “get you in right away” are the ones to steer clear of. A long waiting list, or at least a few weeks wait for an intake appointment, bodes well for the quality of service you can expect. Ask for referrals from your pediatrician. It can be difficult to find people to ask for personal recommendations when you are first starting to get services, but once you’re “in the system” you’ll find yourself sitting in a lot of waiting rooms chatting with other parents. Take advantage of these opportunities to ask about their experience with various agencies even if you aren’t currently looking to switch services.

Demand Quality Service–Your first priority is your child. Don’t accept sub-standard services! When you first start services with any provider they hand you a stack of papers that outline your rights and the policy to file complaints. I used to dump those in the trash as I walked out of the building, but now I know how valuable they are. You need to know what you are entitled to and what procedures to follow if you need to escalate a complaint. If it becomes necessary, switch agencies or providers in order to get better services. Also check for a parent advocate organization in your area. They can refer you to services and will send an representative with you to meetings to advocate on your behalf.

Whenever you can, advocate for better working conditions for mental health workers. Our kids are only going to be safe if workers are qualified, well-trained, and fairly compensated. Not long ago, there was a riot in a psych facility in my area and the workers were blamed for not handling the situation better. I wrote an op-ed suggesting that we’re asking too much of these entry-level, hourly employees and that working conditions must be improved. You can read my full op-ed here: Charlotte Observer/Don’t blame workers for psych center woes

Why I use the word “rage” and not “tantrum” for my child with developmental trauma

What kind of parent calls the police when her kid has a tantrum? Or, even worse, tries to check him into a mental health hospital? Me.

Every time the cops arrived or we got to the hospital, my young son Devon transformed into an angel. I’d explain that he’d been throwing a terrible tantrum. Yet, his serene affect and puppy dog eyes would belie my words. It was hard enough to ask for help but to imagine the eye-rolls behind my back was humiliating. I probably reminded them of the woman who called 911 because McDonald’s had run out of chicken nuggets.

I probably reminded them of the woman who called 911 because McDonald’s had run out of chicken nuggets. Click To Tweet

Time and again, I was turned away without the help I so desperately needed because we all know what a “tantrum” looks like—a kid kicking his or her legs, crying and screaming, for maybe 10 or 15 minutes. By calling Devon’s episodes “tantrums” I was unwittingly minimizing what was actually going on and no one was taking me seriously.

These were no tantrums. Devon was:
  • Screaming, spitting in my face, and making himself throw up
  • Ripping his bedroom door off the hinges, and putting holes in walls
  • Punching, kicking, and attacking his brothers and sister
  • Pulling out his eyelashes and banking his head on the floor

These episodes of extreme behavior were happening several times a week and would often last for hours. I was in over my head and needed help, but because I was using the word, “tantrum,” people thought I was overreacting.

These weren’t “tantrums,” they were “rages.”

When I began to use the correct terminology to describe Devon’s behavior, health care and mental health professionals, even police officers, were more receptive. “Rage” was a magic word that made people pause, listen to my story, and try to help. Instead of brushing me off, they called in psychiatrists and social workers. They made referrals for local services. They stopped treating me like I was just a high-strung mother.

If your child’s behaviors are extreme, way beyond being a tantrum, your child may be having rages too. “Kids with developmental trauma can tantrum but they can also rage,” said Institute for Attachment and Child Development Executive Director Forrest Lien. “A child has a tantrum to attempt to get his way but it is contained. A rage is out of control and stems from the child’s fear and anger. It’s irrational and almost dissociative.” It can be difficult to tell the difference between a rage and a tantrum, especially when your child’s episodes have increased in severity and length gradually over time.

Here are some distinguishing hallmarks of a rage:
    • Rages are explosive

    • Rages feel scary and out of control

    • Rages last longer than a few minutes

    • Rages become physically violent and aggressive

    • Rages may include acts of self-harm

    • Rages often end in destruction of property or harm to others

These behaviors are not normal for a child of any age. If children acts out in these extreme ways, they need real help. Parents need help, too.

So, how does a parent get help? How do they get someone to understand the seriousness of the situation? They need to adequately describe and use the word “rage” when talking to therapists, pediatricians, and other professionals. The word “tantrum” paints a picture that is nothing like the extreme episodes the child experiences. When they start with, “My child has rages…” and then describe specifically what the episodes look like, how long they last, and how frequently they occur, people seem to listen more closely.

“Rage” is a word that works.

Has this worked for you? Are there other words that “work” you can share?

Assumptions: The deck is already stacked against you

Navigating the mental health system on behalf of our children, especially those with extreme behaviors, is like traversing hostile territory. The assumptions mental health professionals make about us and our families are quicksand sucking us into a quagmire of misunderstanding and bitterness.

Here are just a few assumptions that have been made about me:

  • You need basic parenting instruction and training; forget your idea of common sense, and trust the ‘professionals’
  • You’re being selfish and need to snap out of it; you’re not putting your child’s wellbeing above your own
  • You treat your birth kids better than your adopted child; that’s why he’s acting out
  • You don’t feel affectionate towards your adopted child because something is wrong with you emotionally and mentally

Of course, the worst, and most pervasive, assumption I’ve encountered is, “You’re mostly, if not entirely, to blame for your child’s behavior.”

Ouch. This one is perhaps the most difficult to grapple with–don’t we often secretly believe, or at least wonder, if it’s true?

As parents we must accept responsibility where appropriate, but with some perspective. Blaming the parent–especially an adoptive parent–is way too easy of a fall back position for a therapist. Lack of progress with your child can be blamed, not on their methods and approach, but on you. It also removes any agency and responsibility from your child.

Trust me, mental health professionals are making assumptions about you from the moment you walk through their door. The deck is already stacked against you. So, forget being charitable, assume the worst, and keep your guard up.

Blaming the parent–especially an adoptive parent–is way too easy of a fall back position for a therapist. Click To Tweet

Don’t overshare

Be very cautious about sharing sensitive information with your child’s therapist. It’s easy to think of them as objective. They’re not.  If it comes to taking sides, they are on your child’s side. Don’t do what I did and blurt out at your first appointment that you don’t feel maternal affection towards your child. If you do, that’s almost certainly the ONLY thing they’ll focus on going forward. They’ll immediately conclude this is the cause of your child’s extreme behaviors, not considering that it might be the extreme behaviors that has caused your lack of affection. I see a therapist myself now, and that’s where I blurt out everything and get the support I need.

Keep a journal

It is critical that you start keeping a journal. Start today. Every time you see a therapist or doctor–document the date, time, who you saw, and a summary of what was said. If your child’s teacher, foster parent, or caseworker calls you take out your journal and take notes. I once had a case worker insist my son hadn’t exhibited any behavioral problems in the last month to justify pulling his services. I was able to pull out my journal, flip it open and ask: “Well, what about last Wednesday when Juan called me to report that Devon was trying to stab a peer in the head with a pencil and had to be restrained?” I went on to list multiple incidents from the time period in question. His services were renewed.

Don’t believe it

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Your own feelings of inadequacy and guilt are likely to be your biggest weakness, especially when some of your most self-judgmental thoughts are affirmed by the assumptions underlying the advice mental health professionals give. You’ve been living under a great deal of stress and instability. You may be traumatized by what you’ve been through. 

Listen to the advice you are given and take what’s of value, but don’t automatically believe everything you are told. Just because they’re the “professionals” that doesn’t mean they speak gospel. You know your child and family best.

How have assumptions affected your ability to get help for your child?