Labeled

Healing and growing take work- often painful, gritty, I'd-rather-run-away than face this stuff kind of work. But, as with most anything of value, it's always worth it.

A couple of weeks ago, Samuel and I returned to the doctor's office where he had done the ADOS assessment for autism. We were there for the results and to go over the full report from the clinician's observations of how he completed tasks, how we answered one bazillion questions about his development, behaviors, understanding, and communication, and his medical history.
She handed both of us copies of the full report which spanned four pages. We flipped through the papers and scanned the medical description of what has been plaguing him and our family for the better part of 13 years. Her conclusion was Autism Spectrum Disorder (high functioning), and Bipolar I.

The black ink that bore his diagnoses swam in front of my eyes as tears formed. I wasn't so much upset, as relieved. He's had both of these diagnoses before- however- never both at the same time. He was given the diagnosis of bipolar when he was just three years old. It was shocking to me then. It seemed too big of a struggle to lay on shoulders so small, yet, the behavior and moods we'd experienced fit well within the perimeters of the disorder. But, when he was given that label all those years ago, it wasn't enough to explain everything we were dealing with. I knew in my gut there was more to it, but his young age made it difficult to tease out what was going on.
At that age, he'd been hospitalized for the first time. When we were discharged, he left with BP as the main diagnosis, and we were thrust onto the path of psychiatric care. What followed was years of running into dead ends. Psychiatric care is overwhelmed by the demand and not enough providers; psychiatric care for children is even harder to find, and children under the age of 8 are often refused service by doctors. It's not considered 'good practice' to diagnose children with such a heavy label, and for the next 5 years, we were given a myriad of other diagnoses instead- all of which essentially were symptomatic of bipolar. Right when he turned 9, we saw an incredible doctor at UVA. She was highly sought after and we quickly understood why.

Her ability to draw out what she needed from her patients, compile information given to her, and her uncanny skill in understanding family and behavioral dynamics, allows her to dig through unnecessary detail and identify the underlying issues. She diagnosed him with autism. I was relieved. I stopped taking him to the less than helpful psychiatrists. Instead, we stayed with Dr. Anderson (developmental pediatrician), traveling several hours one way for appointments regularly, and she helped us with med management, recommended therapies, and education about autism. I'm embarrassed to admit that because I was keenly aware of how autism was more 'glamorized' (for a lack of a better word) than the 'run of the mill' mental illness, it was easy to latch onto the autism diagnosis and forge ahead. Autism had risen into the collective awareness of our communities, and explaining to outsiders that questionable behavior stemmed from autistic struggles was more easily understood and accepted than sharing the painfully stigmatized information about mental illness. Dr. Anderson was incredible for us. She found a combination of medications that helped immensely- though our lives were anything but 'normal'. Still..... I knew there was more.

To get this combination of diagnoses; explanations of why and how his brain works the way it does, and education on what to expect, how to respond, and the types of support we need was ... a huge relief. The two together answer so many questions. They make life hard. For him, and for the rest of us. The two disorders buck up against one another and can exacerbate many of the symptoms he wrestles with. It's a sobering diagnosis- one that will require him to be diligent for life in taking his medications, eating well, resting and sleeping enough, exercising, and intentional social interaction balanced by intentional solitude. It's a lot for anyone- and certainly for a kid who is weeks away from his 16th birthday- and yet, there is relief. Comfort. Words given to years of hardship and confusing moods and responses. A real, tangible explanation as to why this has been so hard and so traumatic for all of us. Validation that he's not a bad kid, I'm not a failing mother, and our effort to push back the weight of this hardship has been nothing short of heroic.
He's one of the strongest people I know. He's had to live through being my first child- and my early years' lack of understanding about the brain and mental health and illness. He's had to endure my anger, fear, grief and inadequacies as I suffocated under the weight of scathing judgment heaped into my lap by doctors when he was young, and some extended family (who are no longer involved in our lives).

We've grown so much together. I have learned to trust my intuition. I never stopped seeking, begging for help, researching, trying everything I possibly could with the knowledge I had- but I also took on the burden of judgment from others who had no idea what life looked like for us. I allowed ugly words spoken in ignorance take root in my heart and spirit and regrettably, I mothered all of my children from that place of wounding for too many years.

We are survivors. He's done incredible work in the program he's been with for the past 4 months. He's talked, journaled, asked questions, read, participated in specialized therapies, gotten upset, angry, sad; he's engaged in vulnerable conversations with me that are hard to digest, yet powerful in their sharing. He's not a statistic. He's not crazy, or broken, or out of reach. He's a mighty powerhouse of talent, intelligence, ability, compassion, and maturity that comes with walking through the darker places of life.
I'm so proud of my son. We are the faces of people living with special needs and mental illness. We are warriors fighting a broken system, a challenging chronic health problem, and navigating a world that sees mental illnesses as excuses, or humanly inferior, or frightening. Neither of us would have chosen this for him. But it was chosen for us. And both of us are passionate about sharing our experience with the world- to offer hope, understanding, education, and connection.
I'm grateful for his tenacity. And I'm honored by his willingness to pull back places he struggles and share those vulnerabilities with me and others. He's something else- that kid of mine. And I have no doubt that he's going to change the world.

Speak now, or forever hold your peace

I've been going through Beth Moore's Breaking Free study with a couple of friends over the last few months. It's been a good place to examine myself; how I operate- in relationships, in my expectations, and life in general. It's been hard, and painful, and beautiful. (I highly recommend it!).  I'm in the beginning of week five, and the last couple of weeks have had us digging into our backgrounds to discover hard things passed down in our families as well as the really beautiful things. All of us carry both within our families of origin, and all of us will continue to pass on good and bad to the generations coming after us. The goal of the study is to discover, with intention, those things you desire to grab hold of and continue, and those things that have created difficulty, struggle, pain or dysfunction and in identifying those things- let them go.
Interestingly, I watched the video kicking off week five on Friday night. (start at 45:40 for the clip I'm referring to). The night that hate descended publically on my hometown of Charlottesville and made a blatant display of evil personified. The video addressed what Beth considers the most poisonous 'legacy' of many families: Racism. 

She does a great job of calling it out without mincing words, and without painting an ugly, insidious 'tradition' with sugared words to help us digest them. She calls it an abomination. A sickness based in fear and ignorance. She calls us to stand against it- with courage. Knowing for some, standing against the covert and overt racism in family relationships will cost something. She passionately argues that the ideology of being 'color blind' is a disservice, a farce, laughable. I'm with her all the way. She says when we are raised to believe that we are different because of skin color, then by default, it means someone has to be better. Yep. Amen. All things I am on board with. My only disappointment came when I realized she missed an opportunity to make another powerful, needed point. I would add this to her message:
Serving a creator God means we believe He has created all. All creatures, humans, plants, living things. Calling them good. As women, we frequently remind society that when we were created we were also deemed good, and also created in the image of God.
So... for my brain, for my logic, for my reasoning.. this seems a simple analogy. None of us look at the gorgeous blue butterflies flitting around our lawns and think "Man. Those blue butterflies are so much more important and valuable than the orange colored Monarchs. In fact, we should really try to get rid of those Monarch butterflies because they are in the way and annoying me by trying to get all of the nectar from these flowers! Dont they know they don't belong here?! We should make them go back to Mexico." We don't visit the animal shelter and tell the staff that all of the yellow dogs shouldn't be allowed to be adopted because they aren't as good as the other dogs; becoming incensed that the yellow lab is taking up space they could use for a chocolate lab and getting violent when told we are off our rocker for using such warped logic.

This is an overly-simplified analogy, stripping history and pain and wounding from the subject for a moment; but my point is this: Especially for those of us who love our creator God- why would we even consider the thought that skin color determines levels of value?! God is creative. Artistic. Intentional. We have no problem accepting that in the animal world, and with various plants and flowers- yet we stop short of offering the same effortless acceptance to the creatures called humans that He has created in.his.image. 
Beth Moore is correct. In many families of every color (especially here in the United States where our history is marred with horrific crimes against humanity based on skin color), there has been a passing down of racism at some level. It can be difficult to look at. She speaks of her grandmother who faithfully served others, loved her church, spent time in her bible every day and then spoke disparagingly about a group of people- made in the image of God. It's based in fear and ignorance and continues through generations with the subtle (or not so subtle) rhetoric of : if we are different- then someone has to be better. 
Pastor John Pavlovitz posted on his website this weekend calling those of us with white skin to speak up. To call out racism for what it is. To call out our white counterparts engaged in this disgusting display of fear and hate and brutality. To refuse to stay silent in our protected lives, and largely disconnected communities. His message is powerful and necessary- and I want to push it a step further.
I have heard many of my friends of color say that they are tired. They are no longer afraid- knowing God holds them. But they are tired of fighting. Of trying to speak out to deaf ears. Ears deafened by the noise of ignorance- never having faced ugliness directed at them or their families or communities based solely on skin color. Ears deafened by the rally of voices around them telling them that 'the American dream is available to all- if they would just work harder'; or 'black on black crime is worse than white on black crime.', or 'they need to get over it. I never owned any slaves and I don't understand what their problem is. I have tons of black friends.', or the more "accepted" statements such as; 'black people are so much better at sports than white people'; tossed out as though it is a compliment and should be received with gratitude. What about,  'well, he had been arrested before, so I'm not surprised'; and the ever-present: 'why do they have to say black lives matter?! Don't they know ALL lives matter?!'. Those continual sound bites.. perpetuated in our communities, churches, families, friendships, social media, television... they drown out the voices of the oppressed crying out to be heard.
They're tired of competing with the hum of words soothing the nagging worry in those of us with white skin who dare to consider that all of this is so horrifically, terribly wrong... and that maybe, somehow, we have played a part.


Yes, John Pavlovitz. We must speak. It's our turn. It's the responsibility of those of us with white skin to tell our friends and brothers and sisters with brown skin that 'we've got you'. You don't need to keep fighting. You can rest. We will fight FOR you. In love. In honor. And to tell our white brothers and sisters, no. No. We won't stand for this. It's evil.
To my white brothers- your voice carries the most weight. You have the 'in' to those who perpetuate this violence of word and deed. You have the highest probability of being heard by other white men- because you look like them. You have to be brave. Selfless. Honorable. Bold. To call out the coworker who makes a joke that turns your stomach. To challenge your child who makes a blanket statement about 'black people' that he picked up in the lunch room. To tell your family- No. That's not true. And it's hateful.
You have a huge responsibility to use your unearned place of privilege for good. Not to apologize for it, to feel guilty about it, or to try and deny it. No. To use it. For such a time as this.
To whom much is given, much is required. With great power comes great responsibility. Please. For the literal love of God and those created in His image. Use it wisely.