This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Saturday, September 26, 2009

When is a label a good thing?

We started with a new therapist recently and he has been working with Bear on his Complex Post Traumatic Stress Disorder (C-PTSD). We were required to go over an article about C-PTSD with Bear and discuss it. Bear didn't understand the article, but that didn't matter. What did matter was that he didn't think he had C-PTSD. Actually, this was more of a defense mechanism. He doesn't want to have PTSD so he's in denial.

Bear's latest goal is to be a Secret Service Agent protecting the President. We have never told him that with the number of psychotropic meds he takes (and must take since he's bipolar), he will most likely be unable to join the military. He thinks he's eligible for the Naval Academy because he makes mostly As and Bs. We're very happy he's making good grades, but all of his classes are remedial. At this rate when he graduates he'll be at least 2 years behind (he's a sophomore). Oops! I almost took off on a tangent.

So Bear knows that if he has a label like C-PTSD or bipolar disorder he will not be eligible for the Secret Service. Therefore he is pouting about being labeled and upset that his therapist is pushing for this "new" label. We tried to explain that labels are not always a bad thing because they can help you get the right treatment. We also tried to explain it is not us or his therapist that are doing this to him - he already had the problem (and in many cases the diagnosis), we're just trying to explain it to him and help him. We tried to explain labels are diagnoses. They are not judgments or criticisms. They can be a good thing because they mean a child can get help sooner, possibly keep from getting worse or having it affect the rest of their life, and maybe even heal.

Bear doesn't always "get" abstract stories or analogies, but I think this one actually got through to him a little.

Broken Leg

Let's pretend Bear breaks his leg. A doctor diagnoses or "labels" him correctly. Then the doctor treats his leg - cast, physical therapy, bed rest... Ten years from now Bear goes for a job where he is expected to run a hundred miles a day. The potential employer asks Bear if he has ever broken a bone. Bear says yes, but he's taken care of himself and is 100%.

Bear can't hide the fact that he had C-PTSD from the Secret Service, because it is in his records, but if he handles it now instead of later he can show them he's handled it and maybe they'll take him.

Another scenario. Bear breaks his leg. He's told he couldn't have and didn't break his leg. He is forced to act as though it didn't happen and walk on it. It heals wrong and will be wrong for the rest of his life. He has trouble walking and other parts of his body don't work right because they are trying to compensate for the broken one. He cannot do things that require a healthy body that works properly. When the potential employer asks if Bear has ever broken a bone, Bear says no. However, he obviously is not able to do the job.

If Bear manages to somehow get the labels off his record but does not deal with his issues, then he will be "caught" when he takes the psych exams. They most definitely would not accept him in the Secret Service.

Third scenario. Bear breaks his leg. He is misdiagnosed or decides on his own that nothing can be done about it and his leg will just never be right. He might as well give up, and be in a wheelchair for the rest of his life...

No matter whether he's labeled or not his leg is still broken. If he accepts the label and works hard in treatment, then he can mend his leg to where it works almost as well as it would have if it had not been broken.

Color Blind

Hubby is colorblind. Let's say that as a child Hubby always wanted to be an airline pilot. Airline pilots cannot be colorblind. No matter what he does, Hubby cannot change being colorblind.

Hubby has a choice. Be miserable and/or angry for the rest of his life, or figure out what it is he loves about being an airline pilot and build a new dream (if it's flying maybe he could find another job that will get him in the air like maybe a hot air balloon pilot, an airplane gunner, or an Air Marshall? or if it's the planes then maybe he could be an airplane mechanic).

Bear's dream is to be a Secret Service agent who guards the president. He needs to decide if he's going to keep that dream or find another one. Either way, he needs to work hard to deal with as many of his issues as possible. Guess we'll see if he chooses to try or to continue to deny and throw up defense mechanisms.

Labeling Has a Bad Rep.

I recently saw this article about labeling and others like it and thought I'd respond:

Why Psychiatric “Labels” are the Problem
Increasing numbers of people realize that just because a child fidgets, or loses pencils or toys—criteria for an “ADHD” diagnoses, this doesn’t mean a child is mentally ill. In fact many now claim that children diagnosed “ADHD” are really suffering from lead toxicity, or allergies, or poor diet, or lack of reading skills, and not a mental “illness.” The problem is that they continue to use the psychiatric label, such as “ADHD”, which stigmatizes a child as “mentally ill.” If in fact a child suffers from lead toxicity, then why not call it lead toxicity? If he hasn’t been taught to read, why don’t we just say he hasn’t been taught to read?
The same is true of all psychiatric diagnoses—every single psychiatric label stigmatizes the person being labeled and as long as we continue to use psychiatric labels (contained within the DSM) to describe behaviors—psychiatry will continue to profit while the public suffers.
Psychiatric diagnoses are simply lists of behaviors that psychiatrists have compiled into little lists, given a name, added “disorder” on the end—then voted them into their billing bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM) as “legitimate.” This is big, big business, but it isn’t even close to legitimate diagnoses. Not in any medical or scientific context. But in a profit making context? Yes—coming up with new lists of behaviors and new “disorders” is the bedrock of the multi-billion dollar psychiatric/pharmaceutical industry. Its how they get paid. Remember, no psychiatric label, no billing insurance. No psychiatric label, no drug prescribed. So until we stop using these psychiatric labels, which mean nothing other than what some psychiatrists decided was a mental “illness,” we will never stop the “stigma.” The psychiatric labels are backed by corporate interests—not medicine, and not science.
Is Free Thinking a Mental Illness?

My response (to an article that is no longer available, so forgive me if parts of it sound out of place):

Yea, nice. Unless your kid needs those labels to get services, proper medication, support, and therapeutic help. My kids have most of those “labels” and they NEED them.

Not labeling Bipolar Disorder does not make my son an artist, it makes him a tortured psychotic.

Not labeling or medicating my daughter’s ADHD does not make her a “normal kid,” it makes her unable to participate in school, learn, or make friends.

Not labeling someone with Oppositional Defiant Disorder means that that child does not get any help, which means yes, he might become a revolutionary, but more likely he’ll be unemployed (you can’t hold a job if you constantly talk back to your boss), homeless (no money, no one who can tolerate being around you willing to support you), dead (mouth off to the wrong person), or in jail (mouth off to an authority figure or do something stupid just to spite someone).

Wanna know where to find those unlabeled teens in 5 years? They’re homeless, dead or in jail. And their parents are being told that it’s all their fault.

Some articles state that all mental illnesses are subjective and therefore don't exist. I have QEEG reports that show my kids' brains are hardwired differently than the average person.  

So Why Label?

Lots of reasons!

To get them access to services and medications so they can:
  • heal if they're able to heal 
  • get the right treatment - therapeutic parenting, attachment therapy, physical therapy, trauma therapy... instead of wasting time on treatments that aren't effective for their type of issues.
  • have a break from their symptoms so they can mature and gain coping skills without having to feel like they're in a war zone 24/7
  • help them remain calm, stable, and generally happy, so they can focus on living their life and attaching and developing relationships
  • help them sleep, focus, and learn
  • access needed programs at school and other organizations 
  • keep them from being constantly suicidal, homicidal, and/or psychotic
  • keep others from believing they're just bad kids, manipulative, deliberately defiant, need punishment, deserve/ want to be in juvie or worse... 
  • keep them from internalizing the negative effects of their diagnoses as their fault, personality or identity shortcomings/ flaws, or blaming others
  • ... 


I have 2 kids with major trauma and mental illnesses. They take meds for their bipolar disorder, and the one with severe ADHD takes meds for that too.  Hubby doesn't have a lot of problems with these (although he hates the sheer number of meds they take and the thought that they will have to take many of them for the rest of their lives), but most of their major issues cannot be "fixed" by medication (C-PTSD, RAD...), and are trauma-based, not biologically-based.

Experts say some symptoms (like insomnia, anxiety, restlessness, irritability...) can be alleviated with medication, even though it doesn't cure or affect the actual diagnoses (like trauma-based issues).  I'm all for medicating those symptoms, because, in my opinion, you can't work on healing trauma if you can't sleep, focus, sit still, stop crying or raging, react normally to external stimuli (like someone saying, "you dropped jelly on the counter," which, in my opinion, should not trigger a screaming rage but has)...

So in the past Hubby's opinion was that I have allowed the kids to be over-medicated. I disagree. They are on lots of meds, but it took time to find the right meds and good combinations that worked for their individual body chemistry. They are already taking fewer meds than they did 2 years ago. I think a lot of this is due to the fact that they could focus on internal healing when their outside world didn't feel totally chaotic. (I hope it goes without saying that we are not addressing anyone's needs and issues with ONLY medications - we also do therapy, therapeutic parenting, and many other tools).

I think it's like surgically inserting a pin in the leg of someone with a shattered bone and giving them a crutch, a cast, and major pain meds. The cast keeps things stable while the body works on mending and healing. The crutch helps them be able to do the things they would normally be able to do if they hadn't broken the leg (like walk and go to school). The pin is necessary to give the remaining bone pieces something to heal around. There is scientific evidence that the body heals better when it is not in pain so you need the pain meds.

Some drugs are like casts and crutches and will not be needed down the road. Other drugs are like the pin and the body wouldn't work without them. I would never allow my children to be drugged into zombies, and when the child is stable I will start looking at lessening or removing their meds (or amping up therapy treatment) - for as long as they continue to make progress healing.

Do Kids Need to "Buy Into" These Labels?

Bear thinks he's normal.

When kids are little, they call it Magical Thinking. Could be positive thinking I guess.  All I know is that whenever we discuss a diagnosis, medication or issue, Bear gets mad - at us.

We've talked to him about this repeatedly. We are not labeling him to be mean and put him down. We are not doing this to him. We are trying to identify triggers, symptoms, and issues so we can help him deal with them.

Did you know, that there is even a mental illness called Anosognosia that prevents people from being able to recognize their own bipolar disorder?

Someone asked me if it was really necessary for Bear to "buy into" his labels and understand them. I think his reaction highlights that yes, he must understand. If Bear thinks he's "normal," then he has no motivation to do anything to deal with his issues. In fact, all of his energy is devoted to getting away from the mean people who think he's not normal and that he should be doing stuff he doesn't want to do. {By the way, the "mean people" is mostly me in case you hadn't guessed.}

Also, when he has behaviors that we know to be symptoms of his mental health disorders (depression, anxiety, night terrors, rages...), and he doesn't believe in his "labels," then he is very likely to attribute the behaviors to something else and/ or blame himself and his faults. Just more proof that he is unlovable and unworthy of love, or that people are out to get him, or that if he's feeling depressed then there must be something causing it. He starts looking around him for what is causing these feeling and of course, he finds "it" 

Unfortunately, "it" is rarely the actual problem. Because of his RAD, "it" is usually me. I want him to be in special ed (it's not because his brain injuries and ADD severely affect his academics). I just want to control him by not letting him go somewhere or do whatever because I enjoy being his warden and torturing him. Because I'm "holding a grudge." This is all worsened by the fact that he really doesn't remember the past very well. He has magical thinking, distorted reality, poor memory, and dissociates.

PTSD/ Not Feeling Safe

Bear needs his world to be within his control. This is a life or death feeling. It's always someone else's fault because that's safer {Why Doesn't My Child Feel Safe?}- he's terrified we will discover that he's not perfect and leave him. {If You Find Out I'm Not Perfect, You'll Leave} 

Therefore, someone else did or said something to make him mad - his raging now has a reason that makes sense to him and is not caused by his Bipolar Disorder. Instead of being caused by his PTSD, his night terrors must be because the devil is mad at him or he has special powers (because he is Native American) - and they must be predicting that someone close to him will die.

People Tell Children They're Fine/Normal
People either don't understand mental illness, or just can't believe how severe the issues and behaviors are and how they affect the child, or how these illnesses and trauma interact. Often, they think the child's issues should be kept from the child to help keep from "damaging his/ her self-esteem." They don't seem to understand that without this understanding of the child's issues, then the child often assumes his/ her behavior is his or her fault; that there is something wrong with him/her. Which do you think damages a child's self-esteem more?

Everyone around him (school, friends, girlfriends...), is telling him he's fine. They think telling him the truth will damage his self-esteem and cause him to feel bad about himself, or they really don't understand it. The special program he’s in for emotionally disturbed kids sees that he is no longer physically aggressive, and do not consider him severe enough to need to be there anymore. They don't see that the structure they provide is the reason he's doing well.

It doesn't help that my kids have what I call "Charming RAD" (Disinhibited RAD). Kitty's caseworker denied that she had RAD, because "she gives me big hugs every time she sees me." (That's actually a huge red flag. It means she indiscriminately tries to please others so they will take care of her). It is easy for Bear to "fool" people who are not around him much. Truthfully, he fools some people who are around him all the time too. It is a survival instinct leftover from when he had to make people like him or they'd hurt or abandon him.

How does that saying go?

You can fool some of the people all of the time, and all of the people some of the time, but you can not fool all of the people all of the time.
Abraham Lincoln, (attributed)16th president of US (1809 - 1865)

When it comes to people outside the family, I'm not so sure about this. None of these people have a relationship with him, he's not actually capable of them, but they don't see that. There is no give and take, and they really know nothing about him. He can and does function in public, and that is a huge step forward. However, he will eventually have to have relationships with people that lasts longer than 6 months.

Even those who know him well enough to understand that he has serious issues, cannot agree on how best to help him. Unfortunately, Hubby and I often fall into this last category, and it is not helping our relationship at all.


Adelaide Dupont said...

The broken leg is more common but it is temporary. Colour-blindness or achromsosia is permanent and it changes the senses or vision. The acromat and the person with the broken leg are otherwise 'normal' if they don't use defence mechanisms.

And eyes and legs are controlled by the brain. But in these scenarios they are held independent from the brain.

And if you never broke your leg but still can't run a 100 miles a day (or at all).

I think with the broken leg scenarios, 2 or 3 are more likely.

And a really good example of the colour-blind scenario is in Little Miss Sunshine, where the boy is mute and he wanted to be an air force person. But he was colour-blind too. He was really into things like Nietzsche's philosophy.

Kristina P. said...

Great post. I teach an educational group to our substance abuse teenagers, many of them with the same diagnoses as your kids, and last week, I had them talk about labels.

And I brought up exactly what you said about sometimes lables being a good thing so that they can get the right help they need.

Interestingly, many of these kids are perfectly fine being labeled as "stoners." But they don't like "potheads." They said that a pothead is someone who smokes pot all day and then does nothing, whereas a stoner is someone who will do drugs but is still productive. Go figure.

Anonymous said...

SS Agent protecting president = acting out the fantasy of being protected (or of repairing a missed opportunity to protect?) The more he heals, the less he'll need the fantasy? It can be a negative catch-22 (won't heal = can't be SS) or somewhat self-eliminating (heal = don't care as much anyway).
But what I wonder is why he needs to buy into the diangosis? If the label really does bring greater advantages (insurance, schooling), then keep it on paper and don't force it on him. If the label is about treatment options, it is his docs and therapists who need to accept it, not him. If you want him to read and learn from stories of others "like him", he can be like someone with a label without accepting the label - is there harm in permitting him to think he is only 80% like the people w/ the label? I get that he needs to accept bipolar 'cause he needs to adhere to his med regimine and understand what will happen if he slips -- but you don't have to be psychotic to have beneficial effects from antipsychotics ... I'd be tempted to look for ways to "give" him this - denial of label, not denial of symptoms.

Bill said...

Hey Mary, the Mom, we are being attacked on our blog by a family member who thinks RAD doesn't exist. Could you come by and help out? We need a united, educated front.