Showing posts with label bipolar disorder. Show all posts
Showing posts with label bipolar disorder. Show all posts

Wednesday, November 6, 2019

What Happens When my Child/Teen is Admitted into Acute Psychiatric Care? (Part 2 of 3)

Admitting your child to acute psychiatric hospitalization can be traumatic for both of you. Part of the difficulty is due to the fact that there is so much mystery and unknown surrounding the experience. My son has had at least 10 hospitalizations in his life to date, two of my other children have had one hospitalization, and we have experience with multiple facilities. I wanted to share some of our experiences and answer some of the questions I'm most asked.

In VA (where we currently live) every hospitalization will come out of the emergency room after a medical exam where the doctor decides hospitalization is necessary. As I mentioned in my previous post about what to expect during an ER visit, I shared that this process can be painfully long as you wait for a bed to open up in a (hopefully) nearby facility. My oldest son has been hospitalized in the facility closest to us many times, but my other two children both had to go to different cities as they were too young for that particular hospital. Be prepared to have your child in a facility that is not local to you.

The Admission Process:

Usually your loved one will be transferred to the psychiatric hospital or behavioral health facility in an ambulance. I have always followed behind to get them settled. Once you arrive, you will go through a lot of paperwork and your child will be asked again if they have thoughts of hurting themselves or others, and if so, if they have created a plan. By this point in the process both of us are  always tired, and these questions and the stack of paperwork can be wearying. Many times the admission process happens in the middle of the night due to the long hours already spent in the ER. It's easy to feel overwhelmed, doubt yourself when you realize they are now calm (which is very common at this point in the process) and you just want to sleep and/or eat.

Your child will have to remove any article of clothing that could be a potential threat- such as shoelaces, belts, hoodie draw strings, sometimes even body piercings. I have learned to take along a bag if I suspect hospitalization will be the result of our ER visit- and include sweatpants, pajamas, a book or two, cotton shirts, socks, underwear. Every facility is different, but most will allow some personal items including a blanket or pillow, sketch books, stuffed animal, clothing, even family photos. I have learned having things from home can be very comforting to him while he's there. The nurse will take the items from you to ensure you haven't unknowingly (or, sadly, some parents knowingly) brought anything restricted by the facility. If we don't arrive with a bag, I bring items back the next day.

Inside the Ward:

You may be allowed to go into the ward/unit (these words can be used interchangeably) to see where they will be staying and sleeping, or, you may not. Don't be alarmed if you aren't given the opportunity to see the rooms- it is often for the safety and privacy of the other patients. Every room we've experienced share similar traits: sparse, often just a bed (or two) and night stand and desk. The bathroom mirrors are unbreakable and often there is very little wall color or decor. The first time I saw this, my son wasn't yet four and it was a shock to me, but as I've become a veteran to the process, I understand the practicality and safety, and can appreciate the intentional design of a non-stimulating environment. Often our children are so overwhelmed by their emotions, hormones, misfiring neurons, that the lack of clutter and visual stimuli can be very calming, even as it looks bleak to us.
There is usually a 'day room' with TV, nurses' desk, tables, chairs, and couches. Patients can gather to talk, play games, do schoolwork, make simple crafts, or watch TV. There may be a cafeteria. We are incredibly spoiled in this area as the hospital Samuel has stayed most in has one where I can visit and buy lunch or dinner for myself that is actually quite tasty. It helps both of us to have that time together and I'm grateful for it.

Your child will be in what's called a locked unit.  It was jarring to me to have all of the doors of the halls and units locked, and initially it can feel a bit like prison, especially when you hear the slam of the door and the lock engage behind you while you walk away from your child. Remind yourself that this is for everyone's safety. Most units are co-ed and often they will have a same sex roommate. They will be assigned a case worker and during their stay they will be evaluated by the doctor, given meds by a nurse, (if needed) and sometimes they'll spend time with a caseworker whose job is to create a skeleton treatment plan for post-discharge.

Leaving your child to go home can be very difficult. You may feel all sorts of emotions; from relief to sadness, grief, shame, guilt, anger. Don't try to analyze your emotions at that moment; let them be what they are. Your child will likely have many emotions too- and it can make it exponentially difficult to leave if they are angry at you for admitting them, or if they are scared or anxious.
Try to keep the knowledge that they are safe in the front of your thoughts. Both of you need to try and get some rest.

You will be given a specific pin number to use when you call to speak to your loved one. This is again, for privacy. You'll be told about visiting hours and any additional information about the facility to allow you to visit, communicate, or check in on your child. You may be called in for a visit with the case worker during their stay, or you may have emails and phone calls. The lack of communication can feel very strange when you don't realize this is the norm. The real work will come outside of the facility. This time is to reset, ensure safety, and work to get outside resource and support in place.

What I Wish I'd Known:


  • If you don't have a diagnosis already, you aren't likely to get one- even if they write down information/symptoms/and potential diagnoses on the discharge paperwork. 
  • If you do have a diagnosis before the hospitalization, you may see something completely different on the paperwork. Don't put much stock in this. There will be no testing, no critical observation and no deep dive into their struggles during their stay in effort to diagnose.
  • Acute hospitalization is used for stabilization and safety. Often there isn't much more. Your child may be offered some therapy- both alone and with a group; however, many times these sessions are not required. It's possible your child could stay and not once have any level of therapy.

I was devastated with my son's first hospitalization and having to leave him behind, but I was hoping for answers. At the time of admission, we'd had a couple of hellish years without any explanation and I was desperate to kick start whatever meds, therapy, or help that might save us. Imagine my shock and disappointment when he was discharged and the nurse told me they hadn't seen any of the behaviors I'd reported. This is also a huge possibility. You may have left behind a raging, emotional, anxious, insomniac and return only to be told they've been calm, sleeping well and respectful. The structure of the ward can be very relieving to kids who have been stuck in an emotional meltdown, and while it's hard not to be validated by the staff's direct observation of the symptoms, know that this time away has been a rest for their brain.

There is so much more I could write, but this is incredibly long as it is. We'll come back to this topic again and cover more, but for now, this helps to give a good generalized look at what to expect. Information is power and can help both of you to combat anxiety should you find yourself in this situation. That's my goal: help demystify the process and give you more control.

Monday, January 21, 2019

Descent

I've been working on my manuscript that I plan to self publish and also hope to one day publish traditionally- I thought I'd share a chunk today as it's fresh on my mind and heart and I thought you might appreciate reading a bit of it.
So... here you go!

***********

I wasn't allowed to stay with him. My not-quite-yet four year old son would be in the hospital without me for several days. Parents weren't allowed to stay outside of assigned visiting hours, and I would have to leave him in the care of strangers. We were four hours from home and my temporary bed would be at the Ronald McDonald House located a few blocks away. Heavy with the knowledge that I would be leaving him there, those two blocks felt more like a million miles. I had no way of absorbing that pain in the moment. I had to be strong for him, and reassure him that all of this was perfectly normal. He takes his cues from me, and I drew on every ounce of strength within me to present myself assured and calm.

After we'd arrived on the ward and been given the tour, a nurse led us back to the main area and I knew it was time for me to leave. He'd lagged a short distance behind us as we'd woven our way through the halls, his ruffled blond hair bouncing atop his head like a buoy in the ocean. Eyes wide with curiosity, he seemed to believe we were on a grand adventure. I avoided looking down at him to keep myself from feeling anything. I was numb; the overwhelming reality of my young son entering psychiatric care had washed over my senses like a sticky film. I'd nodded in recognition when she had shown me the room where patients gathered to watch movies and play board games, and as she led us through the rest of the wing, I'd scanned the halls for signs of comfort and reassurance that my oldest boy, the one who had thrust me into motherhood with gusto, would be safe and well cared for.

We circled back around to stop in front of the charge nurse's desk. I looked down into his bright questioning blue eyes to tell him I loved him and would be back in the morning. My smile felt borrowed from someone else and I knew he could sense my hesitation as he stared back at me. Breaking our unspoken communication, I bent down to pull him close, nuzzling my face into his neck and reassuring him he was okay and I loved him desperately. He was silent and stoic, tilting his had like a beloved family dog trying to comprehend words flung into the air. As I straightened, I was suffocated with feelings of failure laced with the thin thread of hope that maybe I had rescued him. Maybe this time real help would come. This time we'd find the elusive freedom. My heart split wide open under the pressing weight of guilt and shame. Tears threatened to slide down my face, and I refused to allow them access in that moment. Lies of inadequacy hovered around me like thick smoke, and the slash in my heart gave space for them to take up residency. Walking towards the heavy grey metal doors meant turning away from him. Turning from him felt horrifically symbolic and I rebelled against the wretched feeling. I felt as though all of the air had been sucked out of the room and the carpet seemed to stretch in front of me for miles. The rock in my chest grew heavier with each step I took; creating space between us that felt both visceral and emotional. I swallowed and tried focusing on the colorful childish paintings hanging on the walls. Reassuring myself we'd come to a place of help and treatment became my mantra, threading itself through my brain to keep thoughts of panic and desperation from landing. When I finally put my hands on the door, the steely cool of its surface bore testimony to the atmosphere; cold and sterile. Turning my face back to him, I was relieved and crushed to find him still watching me. His features were so baby-like, innocent and fresh. he understood I was leaving for the night, but thankfully, he didn't have the maturity to grasp the gravity of this dramatic initiation into psychiatric care at such a tender age. He stood rooted in the same spot, next to a faceless nurse wearing cheery, bright scrubs. He was so small. So young. How was I to leave him here without me to protect him from unseen dangers, from others who might not understand his behavior and words?! I was pierced again with the default statement I'd adopted as a mother at some point on my journey: I was a failure. I could see him struggling to fight back tears, and fresh grief washed over me knowing I couldn't run back to wrap my arms around him with protection, reassurance, and comfort. There was no comfort for us to be found in that moment, only the stark reality of reaching for support for our future to buffet me from complete wasting.

Tuesday, September 25, 2018

Fighting Through Crazy

When I was in my late teens I watched the movie Schindler's List. It's a little over 3 hours long, but it took me almost 9 hours to get through it. I could only digest a chunk of it at a time because the overwhelming emotion and grief prohibited my ability to watch it straight through.
I had no personal understanding of the pain and suffering the Nazi's inflicted on others, I had no place to pull from to begin to comprehend the gravity of evil that devoured all but a remnant of a people hated solely for existing; and yet my soul broke as I watched the story unfold, and my heart ached to know the telling was of people's lives and not the dramatization of ones imagination.

I started a book last night called Crazy, by Pete Earley. I read the first page of the introduction and had to put it down. I couldn't catch my breath and my entire body went cold. It was a surreal feeling to read something written by another parent that I felt I could have penned myself. I've looked in books for years to find myself there, the sometimes hard to explain experiences and emotions I live as the mother of a child with mental illness. Our stories aren't the same- his son didn't have bipolar disorder until late in his college career- as is common we've come to learn- but his emotional trauma at watching his son suffer, and the ridiculous fight for health care was identical to mine. Usually, I'm a very fast reader. I devour books quickly and my ability to absorb what is being shared is fairly strong- but this book is forcing me to consume it in small bites. I'm both relieved and angry. I'm grateful for his candor, and and yet it sickens me that there are so many of us fighting like hell to get what our family members need only to be sent away, under serviced, dismissed, or forced to wait for something bad to happen before intervention occurs.

He titled his book Crazy not as a descriptive of his son, but as a statement of the 'search through America's mental health madness'. In a country where so much of our health care is reactive instead of preventative, it's no surprise that the mental health system is the same, but it never fails to shock and sicken me to be told to my face that 'there is nothing we can do until something bad happens'. I've sat in countless doctor's offices, ER examining rooms, at desks of program directors, counselors, psychiatrists, teachers, begging for help, support, something that would keep him and the rest of us safe- and give him a chance at the life he deserves. They have all told me the same thing that Pete Earley was told- until he does something big to hurt himself or others, there just isn't much that we can do. 
This is insanity. This is the life that those of us caring for people with mental illness have to navigate daily. I wish i could say that in my reading I'm finding respite and encouragement, but all I'm feeling is understanding, grief, and anger. It continues to fuel my fight for my son's life- and reminds me that I'm not alone, but it also disgusts me that so many of us feel as though we're fighting in vain to protect our children and allow their brains to be treated with as much dignity and compassion as they'd receive if they had a cancer diagnosis.
The truth is, we're lucky. I have fought long and hard to get my son the treatment he's needed and deserved and it's been a long, painful, expensive battle- but after residential treatment, where he was treated holistically, treated with love and compassion, and chose to dig in and participate, he's doing really well- better than he's ever done in his almost 17 years of life- but the fear lingers. He's manic right now. His sleeping schedule is off, and he isn't sleeping much at all. He's up most of the night, eating, watching videos, roaming through the house, playing his guitar, laughing loudly at funny things he finds on the internet- and I lie awake in bed a floor above him- grateful he's safe, relieved he's happy and here at home with me, but acutely aware of the fact that bipolar is a disease of sharp ups and downs- swallowing the anxiety that rises in my throat at the knowledge that we're at the start of autumn, the time of year he typically crashes into depression- depression that rots his good thoughts, causes him to either withdraw or fling painfully poisonous words my direction.
He's brilliant- as many people with mental illnesses are- and just like every other parent- I simply want him to have the best life he can; one where he's safe, healthy, doing something he does well and enjoys.
Depression that often results in holes in the wall, broken things, fits of rage, and days of sleeping. I prefer the mania to the depression, but even that doesn't mean health or stability. His brain is tired from the continual onslaught of thoughts and information rushing through it. He exhausts me with the flight of thoughts, and level of energy, but also makes me laugh with his crazy sharp wit and goofy antics.

I'm grateful I found the book nestled deep inside of a shelf in a used book store- it's a bizarre feeling to find myself in the pages, and I'm not sure I would have been able to read it just a few years back. I'm thankful other people are willing to pull back the curtain of their lives and expose places that most of us want to keep hidden- if only so that people like myself can nod in agreement whispering 'us too'. That's what drives me to keep sharing parts of our journey- the continual hope that someone else will find us here and link hands with ours as we fight to stand upright in violent waters.

If you have someone in your life who struggles with bipolar, or who loves someone with the disease- I recommend the book wholeheartedly. Together we must keep using our voices against the insanity of the system, determined to make some shred of sense out of the crazy making battle.

Friday, March 16, 2018

Waiting To Exhale

I keep waiting.

When you've lived in chaos for years and years, you learn to expect the moment when the proverbial 'other shoe will drop'. I hold my breath, wondering when it will fall, when the ease will shift and gusts of harsh winds will blow back into our lives... yet, the atmosphere remains calm.

It's amazing to me how humans can adjust to incredibly overwhelming circumstances; surviving through trauma and danger and stress that you'd expect to level a person. I've written recently about how I found myself submerged in depression last fall, and the heaviness and dark shadows that wouldn't lift. The sun has found its way back into my eyes and when I ruminate on what took me so deeply into the bleak desert, I recognize that while Samuel was away, there was space for me to fall apart. I'd held my breath for 14 years- bracing against all manner of aggression, wildly swinging moods, his sensory overload, the effort to keep everyone safe, and the ongoing fight for the services he needed. When he wasn't there, my brain was able to shut down at some level, preserving itself and refusing to operate at the intensity it had been forced to endure for so long. I'd had high hopes of all I would change and accomplish in his absence; creating the structure and routine in our lives that had been lacking due to the ever changing emotional atmosphere, spending more time being present with my other three kids who have lived under the cloud of mental illness and autism their entire lives, finding space for myself- with yoga and prayer and time in nature. I did some of these things, and we certainly made progress, but by the end of the summer I hit a wall and I couldn't have cared less about much of anything. I had nothing left. I'm an intensely feeling person, and found myself numb to most everything. It was foreign, and only increased the hopelessness.



Bringing him home was scary. He'd done so well in the highly structured environment of the treatment facility and I knew that after 9 months away, there would be many adjustments he'd have to make on a daily basis. His therapist had warned both of us that there was usually a honeymoon period of a couple of weeks and often times her patients would wind up back in the hospital for an acute stay within the first 6 weeks. When she'd said that, my stomach dropped. He's had 5 hospital stays since the age of three, and my naive hope had been that the residential treatment would have vaccinated us against the need to return to acute treatment; yet, I was grateful for the warning. I brought him home with the knowledge that he could completely fall apart in the reintegrating of his life.

Earlier this week he hit the 6 week mark.

The air I'd been hoarding inside my body has found its way out, and the exhale is intoxicating. I've realized that when I've been asked how he's doing, my response is beautiful. He's doing incredible. The work he put in while he was away; educating himself about his illness and autism, learning some of his triggers and how to cope with them or eliminate them, his ability to be self aware of his emotions and the response his body is having to stimuli, his powerfully articulate communication when he's felt hurt, or angry, or confused... it's nothing short of miraculous. Before he left he had been a wreck. He had never had the proper diagnoses- at least, not at the same time- and he wasn't getting the support and services he so desperately needed. He'd unraveled to the place of destruction, and our lives were spent barely surviving the daily trauma of improperly treated mental illness. I'd had the police at our home, he'd been admitted into the hospital after an ER visit that we'd made under police escort, he was failing the 9th grade despite his incredible brilliance, he'd been suspended three times in 5 short months of high school, and he was defiant and mean. I was desperate. Terrified for my child and the road we were headed down.
Residential treatment saved our lives.
I left a broken, angry, ill equipped, improperly treated child with a devastating disease and 9 months later was given a young man who does what I ask him to, serves me even when not asked, is excelling in his new school even in honors classes, and whose laughter that had once died now echoes off of the walls. We've had minor bumps. He's a 16 year old boy after all! But we've navigated them in a way that still takes me by surprise. A couple of weeks after he'd gotten home I'd unknowingly said something one evening that hurt him. I hadn't been aware of it, and had gone to bed as usual. He woke me up before 6 the next morning and said he'd had a hard time sleeping and had to talk. He told me that I'd hurt his feelings, that he knew I hadn't meant to, but he needed me to know. I blinked the sleep out of my eyes in wonder... who is this young man?! We talked it through and had a normal day- free from violence, rage, anger, depression or cursing- old responses he'd had when upset or offended.
Life with him home feels so... normal. Average. Safe. We still work hard, and he has a therapist who comes to the house three times a week for three hours each time. Our lives are still vastly filled with work and school and the management of his illness and autism, but they're also so good. Watching him with his siblings and seeing the anxiety of not knowing what the day would hold for them in regard to his mood begin to fade is beautiful. I'm not living in a fantasy world where I believe that we'll never have another crisis or trauma related to his illness.. Bipolar 1 and Autism cohabiting inside of his brain is a bitch. There's no other way to say it. They work in tandem to exacerbate the symptoms of each disorder; But. I have hope now. I can see the potential for a life for him that isn't driven by chaos and being defined by his illness. I can see the weight lifting off of all of us as we learn to live and love as a family outside of continual trauma and drama. I can see peace in his eyes and his body- peace that has settled deep into his marrow, stilling him and grounding him and allowing him to receive our love. He helped create his own miracle. His incredible effort and positive attitude about getting better fueled the change in him and has been a gift to himself and his family.
I realize I may have a painful post in the future about some possible crisis we may experience- and that's ok, as I know that's how life unfolds for all of us, but for today, for now, the waiting is over, and I can finally breathe in the beauty, and then deliciously.... exhale.

Tuesday, January 30, 2018

Coming Home

It's been a little more than 9 months; the same amount of time it took for him to grow nestled up underneath my ribs before making his dramatic entrance into the world.


 My first born has been away for 9 impossibly long/short months and today he comes home.
Much like the day I birthed him, today stretches out long before me- packed full with anticipation, anxiety over the unknown, excitement to see his face and finally hold him, and a celebration of the work both of us have done throughout these months to grow him to the place where it's healthy enough for him to join the 'outside' world.

Much like the first time, we'll both have to learn how to live together. The first time I brought him home, I sat him on the table in his car seat- he was blissfully unaware of the world around him- one that had been radically changed just one month prior when the twin towers fell under horrific attack. He slept peacefully; blind trust in my ability to protect and nurture him; and I stared at his chubby cheeks, crown of thick dark hair, and large hands curled at his face and wondered how I would ever be able to be the mom he deserved. As with every new mother who came before me and those who continue to come after, I had little more than my instinct and fierce love to lead me into raising him. When I try to picture the future now, I find that little has changed. 
We'll create a rhythm of life that's new to both of us, and the rest of the family. We'll rise and fall. I expect to hear the beauty of his laughter- the same boisterous delight that pours out of his belly and first took my breath away leaving tears of wonder on my cheeks. I anticipate tears- of confusion, anger, pain and sadness- from both him and myself- as we navigate our new normal- one he's been growing towards for the 40+ weeks he's been tucked away in the womb of therapy, healing, education and treatment.
The difference, between the homecoming 16 years ago and today, is that today I have the reassuring known history behind us of getting through. With the first child, every stage feels like a lifetime- one that lasts forever- and the beautiful seasons as well as the challenging ones seem as though they'll never end. Baby land, toddler hood, preschool days- they can bleed together into a monotony of sorts- the passing of time marked by met milestones, celebrated firsts, and the bittersweet taste of their growing independence. As time passes, each new stage brings joy and challenge.The difference now is that I understand none of the stages last forever; they inevitably shift as he grows and that continual changing is both frightening and freeing.
The first time I brought him home, I didn't yet know that the two of us would become an unstoppable force; stitched together into an abbreviated army that would fight valiantly for our freedom against what plagued him. I had no way of knowing how connected we would be because of pain and challenge and the grief that comes when the reality of his mental illness finds its way to manifest anew.
But this time, I know. The knowing of our strength doesn't alleviate my fear; he still sleeps peacefully, in blind trust that I will protect and nurture him. But I know more now. I know that my instinct and fierce love is enough. I know that I am completely inadequate to protect him from hurt and harm, and yet, somehow also completely equipped. I know that I will fail, and I know that love and the force of sheer will can beautifully and magically cancel out my shortcomings. I know that there are incredible victories on our horizon and there will also be jarring disappointments; but I also know that we will pass through all of them as we always have; working in tandem to wriggle ourselves into the sweet spot- where his piercingly blue eyes meet mine with determination, and we keep pressing on, because, we know.

Friday, August 25, 2017

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.