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.