Read This

This two page “article” was written by a woman recently diagnosed with Bipolar Disorder Type II.  It’s a vivid description of sinking into mental illness from “the inside”.  It’s fantastic and important.  Why? Firstly, she’s coherent and able to succinctly describe her experiences and state of mind.  Secondly, she is able to describe what “being bipolar” is like, and she can describe how she feels after she found the right medication in the context of a strong support system.  Why should we care? Well, read this article and imagine an 11 year-old child enduring what she describes.  There is a huge waiting list in pediatric mental health facilities.  Can you imagine being the parent of a child enduring something akin to what this woman describes? The healthcare system isn’t equipped to care for children and adults suffering with mental illness in the large numbers that exist today.  By the way, she’s right about the high mortality rate of bipolar disorder sufferers; they die by suicide.

That’s why this article is important.  The more we understand mental illness, the better we can support and help the mentally ill ,thus, preventing needless deaths.  And, yes, that goes for depression and anxiety, too.  Depression isn’t just “feeling blue”, and anxiety isn’t just a “case of the nerves”.  It’s time that the human brain gets the attention it deserves, don’t you think?

On Falling Apart by Sady

Advertisements

Grief Work

I had a very hard day yesterday.  I finally had two hours to myself for the first time in months.  Two hours that I knew would be uninterrupted.  I let the weight of the past few months bear down upon me, and I let it crush me.  It was time.

Have you ever cried, wept really, in such a way that you heard yourself making sounds that were unrecognizable? I scared the dog.  She ran into another room and refused to come out.  My body was wracked by heaving sobs.  I carried on for over two hours.  When I cry like that, it’s like a lament.  I usually talk, too, and all sorts of thoughts and accusations are shouted into the atmosphere.  Broken dreams, hopes deferred, and toxicity.  It needed to happen.

There’s a name for this: grief work.  When you have a child who is diagnosed with a life-changing illness or condition, the landscape of your life changes.  Every part of it.  Nothing is untouched.  I’ve been here before.  I have another daughter with an autism spectrum disorder (ASD) so I knew that a moment would arrive when I would crack.  Everything is strained.  If the condition requires a lot of services–occupational therapies, speech therapies, mental health services, medical services, and pharmaceutical supports, then your finances could end up in ruins.  Dream 1: Financial security.  When you have children, one of your primary hopes is that your children are healthy in both mind and body.  Dream 2: Healthy children.  Oftentimes, people have hopes that they might travel with their children, show them the world or all the places they have visited.  How can you do that if you have an ill child or a child whose behavior is so unpredictable that even performing daily tasks are difficult? Dream 3: Personal Hopes and Expectations.  What about your child getting a good education? Currently, Grace is only able to go to school for 3 hours a day.  Certainly, it won’t always be that way, but a brain caught up in grief doesn’t always see what is rational.  It panics.  How will Grace catch up? Will my child ever be normal again?  Will my child make friends? Will she keep the friends she has? When she’s self-harming and you’re on your way to the Behavioral Health Emergency Room, will she even make it to 18?  Dream 4: My Child Will Have A Good Life.

Will I ever have a normal life again? Dream 5: I Will Have A Good Life.

There is real loss when your child is diagnosed with Bipolar Disorder…or an Autism Spectrum Disorder…or anything else.  In order to become the parent you must be for your child and your other children, if you have them, you must acknowledge your feelings of loss, your fears, and deal with it.  You must find a quiet spot, lance your own broken heart, and let the toxic feelings out, or it will poison you, your relationship with your child, and your relationship with your partner.  Feelings are feelings.  They do not reflect upon the quality of your character, but if they are stuffed and swallowed, then they can embitter it.

  • Why me?
  • I didn’t sign up for this.
  • I don’t want a mentally ill child.
  • I want my healthy child back.
  • I hate my life.
  • It’s not fair.
  • I had dreams for my own life, too, you know.
  • I feel so alone.
  • No one understands what this is like!
  • My friends get to take vacations, and their kids are taking classes.  Their kids are healthy.  We’re broke, and my kid is hospitalized! I hate this!
  • God is punishing me.

It can get pretty toxic when you start letting it fly, but it must be let out.   Underneath all the infected rhetoric lies the grief, and that’s what must be felt.  Once we grieve properly, we can begin to see our lives, our children, our relationships, and ourselves more clearly.  Many people think that grief is only for the loss of a loved one–when someone dies.  Nope.  We grieve for all sorts of things, and the loss of a healthy child in the form of a long-term disability diagnosis such as Bipolar Disorder requires grieving.

Elisabeth Kübler-Ross identified five stages of grief:

  • Denial and Isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Not everyone goes through every step, and not everyone grieves “in order”.  It seems, however, that most people do experience grief in these terms.

I encourage everyone to grieve properly no matter the loss.  Grief acknowledges the worth of what was lost and your own worth as well.  It also liberates us from unmet expectations and hopes deferred so that we can go forth to forge new hopes and dreams in light of new circumstances which is crucial.

For more information on the Five Stages of Grief, here’s a good article.

The Intake

Aah, the intake.  What is the intake? Well, it’s like an interrogation of sorts, and, if you have a suspected bipolar child, a child with schizotypal symptoms, a bipolar child with psychotic features, or a child who is clearly in need of some kind of stabilization, prepare yourself.  The intake experience can be a rough ride, and not the good kind.

So far, I’ve done at least ten intakes, and each one has had a different flavor thanks to the practitioner asking the questions as well as the context of the intake.  If you’re in an emergency setting in a crisis, then your intake will most likely be different than if a social worker from the county is at your house doing an intake so that you can receive services.  What sorts of questions will you be asked? The easy ones usually come first.  Your child’s age, date of birth, gender, their name, their grade, the name of their school, and where they are in the birth order of their siblings.  Are you the legal guardian, are there any custodial or legal issues pending?  There are other questions, too.  Is your child pregnant, sexually active, or gay?  Is s/he currently engaged in a relationship with a girlfriend or a boyfriend? They will ask this of a 9 year-old child so be prepared to feel shocked at the notion of your little child having sex with another 9 year-old and getting pregnant.  It happens.  So, they ask.  They will ask about any pertinent health conditions and any STIs your child might have.  In the intakes I do now, I play those cards for them in a very polite manner:

“Grace is not involved in any relationships with anyone–gay or straight.  She is not pregnant.  She has never been pregnant.  She has never had an STI.  She is not currently and has never been sexually active.  She has never been sexually abused.”

I have found that the clinician expresses relief because they don’t relish asking those questions of an 11 year-old, but they must.  In some cases, it’s relevant, and it’s always important.

Next, we move on to current family climate.  Have there been any recent changes like a divorce, a significant loss, a job change, or the like?  Has the child been abused? Is there any trauma in the child’s past or on-going traumatic situations? This is important because if a child is exhibiting psychotic features, then that’s often due to trauma.  Know this.  They will be assessing you the entire time.  Your mannerisms, your language, how you speak, what you say, your affect, and your tone.  What you say and what you don’t say can discredit you or help you.  It’s part of the intake process whether we like it or not.

Next up, your family history.  You might have a very “clean” family history–no Axis I or Axis II disorders (refer to The Lingo).  Family history, however, is exceedingly important when a clinician is assessing for Bipolar Disorder or schizotypal disorders in general because they are rare and tend to run in families.  Sifting through the family history is almost as important as the presenting behavior of the child when it comes to getting a solid diagnosis.  The current medical establishment is very reluctant to consider a Bipolar Disorder diagnosis for a young child especially if there is no family history.  Bipolar Disorder-NOS has been overly diagnosed in recent years, and clinicians have now become overly cautious in their diagnostic practices to the exclusion of those children who are truly bipolar.  Sad, but true.  So, be prepared to air out your family’s dirty laundry.  All of it.

Can it be a humiliating process? That depends upon the person doing the intake.  It can be a very positive and affirming experience if you have a compassionate and respectful practitioner.  It can also be a very victimizing and shaming experiencing rife with judgment if the clinician is unkind and suspicious.  I’ve had both experiences because I have a very “colorful” family history, and my own history is less than ideal.  Mental illness runs in my family.  Inevitably, I have been asked, “So, what are YOU being treated for?” My answer? “I am not being treated for anything relevant to my daughter’s condition.  I’m healthy.”  I’ve finally learned what to say…after a lot of intakes.  If you have any abuse in your past and you are private and reticent to share, then I’ll be blunt with you.  You must get over it.  Learn to speak, share, and open up about your family’s past and present because it might make the difference between an accurate diagnosis and your child falling through the cracks of an overly burdened mental healthcare system.

Of course, the most important part of the intake is accurately describing your child’s behaviors and state of mind.  If you’ve been keeping mood charts, writing details down, recording statements your child has made, then now is the time to share this with the clinician.  If you have not been doing those things, then start doing it.

You will be asked a range of questions:

  • When did you begin noticing these behaviors? (If your child is schizotypal (having psychotic features) in nature, then s/he may have always been “that way” before the mood disorder emerged.  That’s extremely important to note.)
  • How would you characterize your child before your child started behaving this way? (They are looking for a baseline to compare presenting and emerging behaviors to.)
  • Discuss the nature of the behaviors that you see.  (Now is the time to discuss mood.  Is your child hypomanic? When? For how long? Does your child behave in a certain way BEFORE the hypomania–i.e. headaches, flat affect, confusion, is there an intermittent moodiness that precedes the mood shift from depression before the hypomania/mania, Is your child depressed? Characterize that depression.  Be as specific as possible.  Things that might seem inconsequential to you can be very significant to a clinician.)
  • Has your child been in therapy?
  • Is your child receiving any services or on an IEP?

Bring all of your documentation with you to every intake.  I carry an accordion folder with all appropriate paperwork, particularly paperwork related to diagnoses and treatment plans, with me to every meeting I attend–even when I go to the ER.  You’ll never know what’s needed.  The good news is that once you’ve been to the ER (and you will if you’ve got a kid with an Axis I disorder), your second visit goes much more quickly because your first intake is already on file with the hospital.  They know us on sight at our local Behavioral Health Emergency Room.  We were just there a few days ago when Grace stabbed herself with a fork.  We know our way around quite well now.

The most necessary component of the intake is a sense of humor.  You must maintain your sense of humor, or you will crack.  There’s a reason I’ve done over ten intakes within 5 months.  My child is enormously unstable and currently exhibiting emerging schizotypal features.  I was told today that I need to remove all sharps from my kitchen and switch to plastic spoons and forks–no knives.  I have a safety plan on my fridge.  If I don’t find humor in this…somewhere…I’ll lose it.

This is why Nadia, the therapist on duty at the ER, winked at me when we brought Grace in for evaluation on Friday night–“Long time, no see!” she shouted as the security guard ushered us in.  She had done our original intake when Grace was hospitalized for five days in August.  There are allies to be found in the strangest of places, and a familiar face in the middle of a crisis looks like an angel to me.  Those Behavioral Health ER security guards, who used to look like mean bouncers, now look like huggable bears.  I recognize them on sight and smile at ’em.

The best part about the intake is that you learn to speak up and advocate not only for your child but for yourself.  You learn how to operate with eloquence under pressure, and, aside from wartime, how much more pressure will you know? Try speaking succinctly after just watching your child pull out her hair and stab herself while screaming that three men are chasing her with guns.

“Tell me about your family history and your daughter’s behavior.”

You also learn the true meaning of stress.  My definition of stress is quickly changing.  Traffic? A bounced check? Bad hair? An autistic meltdown? Meh.  I could be at the ER doing another intake.  There’s a lot to be learned from the intake process.  Each one is different.  You’ll walk away from each one knowing your child a little better, feeling more confident, and knowing your own boundaries better, too.  You’ll have a better sense of how to read a clinician and their bedside manner, how to tailor your speech to meet that bedside manner, and how to advocate most effectively to get the needs of your child met.  And, isn’t that what you’re doing that intake for in the first place?

Know Your Child

I had my first daughter in my mid-twenties.  I got married while I was in college and gave birth to Anya six weeks after I obtained my college degree.  That, however, was not in my Life Plan.  I turned down a chance to compete for a Rhodes Scholarship as well as the Fulbright Fellowship so that I could take care of my baby.  I wanted to give my daughter a childhood.  A good childhood.  Something I never had.  So, I put my own Life Plan on hold and embraced housewifery and motherhood at 24 years-old.  It was a sacrifice of infinite proportions.  Honestly, I didn’t enjoy a lot of it.  It was hard.

The best thing to come out of this decision is that I know my daughters very, very well.  I have four of them now–15 years later.  We have very good relationships.  My soon-to-be 14 year-old still holds my hand when we are out and about.  It’s not because she’s needy.  It’s just her way of showing affection.  They are all like that.  Even my 15 year-old.  We know each other.  I know what makes them tick.  What they like.  What they don’t like.  The nuances of their personalities–their brightness and darkness.  This is the benefit of the choice I made, and I recognize that not every parent can make that choice.  Some people must work outside the home.  We have paid the price so that I could stay home.  We have little money in savings.  A 401k? What’s that? Our youngest child has an autistic spectrum disorder, and the medical bills associated with diagnosing her and her current services just keep on coming.  The medical bills associated with diagnosing Grace’s Bipolar Affective Disorder, as it was just recently called, seem never-ending.  I would like to complain, but how can I? There are families in Colorado who have just lost their homes in wildfires.  Another family connected to a friend of mine just lost their baby due to an undiagnosed heart condition.  Unemployment numbers are still high.  What I’m trying to say is that everyone has a battle to fight, don’t they? We all have a story to tell, and we all have legitimate reasons to grieve.  Suffering and loss are an inherent part of the human condition.

So, what is the first step in getting the right diagnosis for your child when you feel in your gut that something is wrong? Quite simply, know your child.  You are going to be your child’s advocate so you have to know them.  You have to speak for them because you have a larger vocabulary.  You are the primary observer of their behaviors, and you are the one who will provide the baseline for the clinicians.  What was your child like before s/he became ill? What is s/he like now? You are the one painting the picture, and it must be as detailed as possible because the clinicians will begin their assessments of your child largely based upon what you tell them.  If you don’t know your child, and I mean really know your child, then your child will slip through the cracks and be misdiagnosed.

Consider this example: My friend Mike has two children.  He and his wife, Danielle, leave for work at 8 AM every morning, dropping their two girls off at daycare on the way.  They pick their little girls up on the way home at 6 PM.  They make dinner, bathe the girls, and put them to bed at 8 PM.  Mike is the one who wakes up the girls and feeds them breakfast so he sees them for an hour, if that, in the morning.  Danielle puts them to bed.  She likes to run in the evenings so she rushes through their bedtime routine because she’s anxious to get going on her nightly run.  She’s not present for her daughters.  If they cry, feel sick, or simply want to be rocked a little longer, then she scolds them for needing her maternal attentions because they are keeping her from what she’d rather be doing.  Mike also works out three times a week in the evenings so he doesn’t see his daughters three nights out of the week–only one hour in the morning.  Weekends then become prime time for spending time with the children, but then, for most families–working families especially–that’s errand time.  Laundry, household chores, bill paying, and other sundry things need doing.  The children either get farmed out to friends and family or dragged along.  How well do you think Mike and Danielle know their two daughters? Generally, they know them.  They all live with each other.  When it comes to the nuances of mood and personality, it’s the daycare providers who will know these girls better.  This is the reality for many families.  What’s going to make the difference is mindfulness or being present with one another.

If you only have a few hours a day with your children, then be present for every second of that time.  Don’t rush through the bath and bedtime routine.  Don’t watch the tele during dinner.  Eat at the table.  Talk to each other.  Watch how your children interact with each other.  Watch body language.  Watch facial expressions.  How are they expressing themselves? How do they treat their toys? Spend time with them.  Play with them.  Read to them.  Put down the cell phone.  Don’t text, tweet, or email.  No computers.  Cultivate a relationship with them because that’s the currency that will be used when something starts to go wrong.  When these things are in place, they are the first things to falter when the brain becomes ill.  It often manifests behaviorally through interactions with family members, how toys are treated, toilet habits, speech, sleep habits, and temperament.  If you haven’t been present or making your relationship with your child a priority, then you won’t notice when it goes awry.  And, noticing is the first step in getting the right diagnosis as quickly as possible.

And, that’s what we want in the end.  The right diagnosis as quickly as possible.

For more information on being present, here’s a short article.