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.

What Happens When My Child/Teen Goes to the ER for Psychiatric Care? (Post 1 of 3)

I am part of a private Facebook group for parents of children and teens who have bipolar or other mood disorders. Many caregivers post a frantic cry for support when their child goes into psychiatric hospitalization. I've also received emails, texts, and private messages from friends and friends of friends asking what to expect or looking for reassurance. I've decided to create a series of three blog posts covering some of the most asked questions and offering information to help educate and dispel some of the mystery.
The three posts will cover what to expect when your child/teen is in the emergency room, what acute/short term hospitalization looks like, and our experience with long term/residential treatment. Please share these posts with anyone who can use them!

What To Expect When Your Child or Teen Winds Up in the Emergency Room For Psychiatric Care:

You've found yourself at the ER with your child seeking psychiatric intervention. There are many ways this can happen: Your child is out of control, or has what the system calls "suicidal ideation", or is self harming, seems delusional; the list is endless. They may arrive by ambulance, in a police car, or under police escort, or simply in your personal vehicle. We have been to the ER many times and have arrived in my car, in my car with police escort, and in an ambulance.

Here is what you need to know:

First- don't forget to breathe. I'm very serious. I know that it's scary, and unknown, and heartbreaking to find yourself in this position, but you have to dig deep and stay calm. Your child needs you more than ever and you will need to be able to rationally answer questions, give accurate history, and most likely, spend a lot of time with your child just waiting. Staying calm might be the most difficult thing you do during this experience, especially if you came to the ER due to any violence or destructive behavior directed at you or your family. Anger is the natural response to that, and yet, for the well being of all of you, you must find a way to momentarily compartmentalize those emotions and be a calm presence for your child.

Be prepared to wait. And then wait some more. This can be an incredibly frustrating part of the process. Many hospitals have specific rooms for mental health patients, and will only utilize those rooms unless it is a life or death situation. With the continually growing mental health crisis in our country, this often means that when you arrive, the rooms are already occupied- leaving you and your child in the waiting room- many times for hours on end. Our longest stay was 27 hours from start to finish- but part of that was waiting on a bed to open up in an acute psychiatric hospital (more on that in the next post).

When you arrive and check in, you will register, give proof of insurance if you have it, then you will wait for triage. After triage (where a nurse asks you why you've come and checks your child's vitals) you will probably be sent  back to the waiting room. Your child may be called again for a blood draw, and if so, once again, you most likely will be sent back to the waiting room. Once called into a room you may notice it's different than other rooms in the ER. It may even be in an area that is closed off from the other rooms. Many rooms used for mental health patients have been prepped- often stripped of any extra instruments or objects that you'd see in other rooms to protect patients from potentially hurting themselves or others.

You can expect to see a nurse, a social worker or mental health worker, hospital registrar, and doctor at a minimum. Each time, your child will be asked if they are having thoughts of harming themselves, and if so, if there is a plan. This is tedious. It feels traumatic to have to answer that over and over, or watch your child have to repeatedly answer those questions. Just remind yourself it's part of protocol. There may be police presence. At our local hospital, there is an officer who sits outside of the mental health rooms. This is again, preventative and for protection, but I'll admit, it can make the process feel further stigmatized and removed from 'normal'.
Your child will be under a strict one on one instruction- meaning, they won't be allowed to be left alone. You will have to stay with them the entire time, and they will have to ask to use the restroom. If your child doesn't want you with them (which happens, and you will have to find a way to stand up under the weight of that pain somehow knowing they aren't well in that moment) then they will have a nurse with them constantly. If they are overly agitated or anxious, your child may be offered something to help calm them.

Prepare yourself to know there won't be a diagnosis in the ER. There will be no 'problem solved' or magic bullet. It can feel anticlimactic after the chaos that sent you there. It can be exhausting in every way, and you will likely experience a myriad of emotions. If you know some of this ahead of time, it can help you adjust your expectations so you don't wind up feeling discouraged.

Generally the goal is to create a plan going forward in order to discharge your child. This may be for your child to return home with instructions to follow up with a psychiatrist. Or, it may be that the next step is acute hospitalization at a mental health facility. In the state of VA where I live, you are no longer allowed to self-admit. You must have a medical clearance first- meaning you and your child may know that he/she wants and needs hospitalization, but you must still go through the red tape of the ER visit to justify it. If hospitalization is the next step, you will be waiting again. Hospitals are packed full and many times you are stuck waiting for a bed to open up at a facility. Often those facilities aren't local to you. The younger your child, the fewer options there are, which can mean a longer wait and possibly a facility that is a longer distance from your home. In our state if you are stuck in the ER waiting for more than 24 hours for a bed to become available, they usually admit your child to the hospital while you wait- putting you in limbo until there is space.
While this is frustrating, and shines a spotlight on the scale of psychiatric care needs, it is normal. Discouraging, yes. But sadly, normal. Most of the time a trip to the ER is a marathon, not a sprint. Try to relax if you can. I've told my son jokes, showed him vines on my phone, watched him try to sleep, played music, and calmed him when his anxiety from the wait overtook him.

The good stuff: Remember your child is in a safe place during the visit. That may be the only consolation for you in the moment, but don't discount it. Breathe it in deeply. If this is your first trip to the ER for this level of care, you are now in a good position to continue to advocate for your child in other arenas; school, counseling, testing, possibly ABA therapy or OT (for children with Autism or sensory issues), the option of getting an advocate or case worker; you have now reached a level of need that makes it obvious how desperately you need a support team. Take advantage of this reality and ask as many questions about available resources as you need to before you are discharged.

Finally: I know you feel utterly alone. You may feel as though you've failed somehow. This is a normal reaction, but it's not true. Many of us have been through this with our children- you don't know only because we aren't posting pics of them in the hospital bed on Facebook and Instagram the way parents of physically ill children often do. We're hidden in plain sight- but trust me; you are not alone. Also, you have no obligation to share information with anyone. You don't owe anyone an explanation, and you don't have to try and defend your choice (or, forced action if others were involved). As hard as it may be, find a way to stay calm and set boundaries. Privacy and space is rightfully yours and you are permitted to take all the time you need to decide what (if anything) you desire to share with anyone other than those intimately involved. You are going to get through this- and you, sweet parent or caregiver- are an amazing and loving person who is doing an incredibly difficult and compassionate thing. Much love!

The Post That Meets My #2 Goal for This Week

I've worked on a manuscript for my book on and off for years. In 2017, I won a contest with a few of the chapters from my book and was given a trip to a writing conference and workshop complete with a writing coach. My coach was a best selling author and I learned so much from her- but her recommendations on how to change my writing brought me to a full stop and stunted a lot of my growth for the last year and a half.

She was complimentary about my work, but she told me if I wanted to sell copies that I needed to shape it into a self-help book and to dumb it down to a middle school reading level. I was deflated. That wasn't at all the vision I'd had for the work I'd bled into, sweat through and gutted my soul out onto the pages. But, I knew she was the expert and I was not. She'd sold thousands of books and I've only had essays published. I felt I needed to consider her advice.
Books have a way of birthing themselves to some degree. My book has grown organically into part memoir and part self-help, if for no other reason than I offer information and resources as a natural progression of my story. I was loathe to chop it into short chapters with three alliterated bullet points  and a cheesy anecdote...and trying it felt forced and disingenuous. As every writer does, I write with a certain cadence, vocabulary and tone- and it's not far off from how I speak. It hit me hard to think that I'd have to 'dumb it down' in order to connect with my audience.

But I can't let it just sit. I've had too many interactions with people who want and need to hear what I have to say to keep it to myself; and I'm ready to move forward into being a more vocal advocate for mental health. I pulled out my manuscript yesterday and read through it. I was relieved to still connect with what I wrote and found it powerful and captivating. It's tough to read personal work- it's a pull back into dark times when life was scary, confusing, traumatic and chaotic. Much of what I had written was taken from my journals; entries often written with clinical sterility, solely for the sake of charting my son's moods. But those entries jog my memories, and the the memories give way to the words pouring onto the pages. Rereading them in part is reliving them, but with the scratchy comfort of having come through it and the knowledge that somehow we've made it.

I'm meeting with a friend weekly- one who pushes me and texts and gets on me when I'm not completing the goals I've set for myself. I've wanted to have my work published and to have the chance to speak in front of groups again for years; but I've allowed fear and the words of other people to hold me back. I'm tired of waiting for permission. I'm annoyed with myself for the myriad of excuses and reasons as to why now isn't a good time. I'm done letting my work sit in a drawer. I have no idea if anyone other than my family and few close friends will ever read what I write, but I know that I can't keep spinning my way around this universe year after year without trying. I don't have a new year's resolution, but I do have a promise to myself- to finally try. To give myself the chance to do what I've always wanted to do. To keep meeting with my friend, keep setting goals, keep writing a paragraph at a time, and to see where it leads me. In fact, that's one of the reasons I'm writing here. Goal #2 for this week has now been met.
I may not ever be a best selling author, but I refuse to be one of the bazillions of writers who are 'going to write a book one day'. I want to be able to look at myself proudly in the mirror, so for me, pursuing what I love has become a vital part of my well being. So instead of 'new year, new me'... I'm choosing to embrace 'new year, true me', and find out what happens when I just keep putting one foot in front of the other.
Cheers to showing up for our real lives!

Wanna Bet? Try me.

Last week was difficult for me.

I had a meeting with a board of people who work together to determine if Samuel needs certain kinds of support, how much of it he needs, and how much the county is willing to cover financially. Caring for kids with chronic illness is beyond expensive. Whether physical or mental; the appointments, therapies, medications, tests, caseworkers, hospital stays, specialists, blood draws, etc. all cost money. We have insurance, but the co-pays for all of this rack up quickly. One of the things I didn't know until the school system shared it with me was the assistance of the community services board and/or department of social services. I'd thought DSS was only in existence to work with families who had been flagged by child protective services- I had no idea that they did other things. Mothering a special needs child requires so much; there are countless things to tend to in order to create stability and ongoing health. When searching for support,"You don't know what you don't know", and for many years I've muddled through trying to find the place of support and help that would actually do something for us. But, how and where can you ask for help when you don't know what kind of help is available to you? That problem is one of the huge reasons I am so passionate about sharing our story. There is no need for families to have to reinvent the wheel over and over to get to the sweet spot of support and health and stability.

Anyhow! I had the meeting with the board who I've been working with for the past 3 years. It consists of multiple representatives from several community entities: someone representing DSS, someone representing the juvenile justice system, one from the county school board, a school transition specialist, someone from parent services, the community services board, and sometimes a few others. I also have my caseworker and our in home therapist's supervisor with me. We meet on average, every three months, to discuss how he's doing, what, if anything needs to be changed, and what the plans are going forward. They were the support system that helped me get him into the residential center which has changed our lives. The meetings are always a bit nerve wracking- it's never fun to discuss difficulties and struggles with people who don't know you outside of this one dimension. However, I've become more comfortable with them over the years, and they truly do care about Samuel and our family. The meeting went as usual. The caseworker gave her update, I gave mine, the therapist's supervisor shared hers too. The board asks hard questions and then discusses what needs to be changed to best support us going forward. After suggesting we increase our weekly in home therapy for him, they turned the conversation to concerns for his future.
He will be 17 this year. Which is only one year away from 'adulthood', which is one year away from losing a lot of the support that is available to minors. The board was concerned about his ability to get/hold a job; live on his own, continue to take his meds properly... and on and on. I could feel my head swimming. I've been more aware recently that he is heading towards manhood, and I've wondered what it might look like for him, but as they talked around me about bringing in disabled adult services, and trying to get him job training so that he could have the best shot in spite of his disability, I was numb. Every time they spoke the word disabled or disability, my heart stopped. I guess in reality, and on paper, he has a disability, and I'm more aware than anyone of how hard he works to live in a world where he doesn't quite fit and doesn't always understand- but I've never thought of him as a disabled person. His dreams for his future aren't always realistic, but I've always chalked that up to the dreams of all kids- sometimes seemingly far fetched, but usually settling into something more realistic as they grow and mature.
 I signed the paper to get a referral for the department for disabled adults, and walked out of the building to the parking lot with my caseworker. We talked a bit and she asked about Tucker too. (She's also the caseworker for him). He's going to middle school next year and I had my meeting with the school earlier this week to go over his special education plan to get it ready for the transition. I've been concerned that it's going to be difficult for him - his autism creates anxieties and quirks that can be incompatible with the highly transitional style of middle school classes. I've put multiple things into place for him that will help support him as he transitions; from working in a small group that will focus on what to expect, to getting him a private tour and access to meeting his teachers alone without the swarm of other kids on orientation night, to signing him up for a summer program at the new school that is solely focused on preparing kids like himself for the change. But as I stood there in the lot, my caseworker told me she was very concerned about his transition and just knew he was going to have a difficult time.

It was more than I could handle. During the conversation I'd held it together, and she wasn't saying anything I hadn't already thought on my own- but as I got into my truck and headed home, it nagged at me. Over the next few days it really bothered me greatly. I've given my life to try and stabilize and provide the best chance for my kids to lead as normal of a life as possible- and while I'm hyper aware that they have issues that can bring challenges, I've also always encouraged them in their talents and skills reminding them of all of the geniuses, world changers, artists, out of the box thinkers who are different. Being reminded by a group of people of how incredibly challenging my kids' lives will be- statistically- was heart breaking. I sat in that low spot for a couple of days, and then one morning, a friend texted me the video I've posted. It was exactly what I needed to pull me out of the discouragement loop. I've read articles and cases about people who have lived wonderful lives- against all odds- due to the encouragement, hope, and affirmation of one person; a parent, teacher, pastor, friend. One person who didn't give up on them and reminded them of their greatness.
It's true that on paper we don't look so great statistically - in terms of having 'normal, successful' lives. But in my reality, I've been kicking statistic's ass for years, and have no plans to stop anytime soon. Call us the underdogs, overlook our abilities, be concerned for our futures- then watch as we blow through the low expectations every.single.time. I'm more than happy to be the test study for this group of board members as a representation of what tenacity, hope, and effort can do; and maybe in a future meeting with a single mother afraid about her kid's ability to have a good life- they'll tell her that he has just as good of a chance as anyone else; because they've seen the odds defied before.

(Please watch the video- it's incredible- whether you can relate to 'special needs' or not, it's inspiring)

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.

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.

Should......The Other "S" Word

 Last week my oldest child turned 16.

There was no party, no used car bedecked with a flouncy red bow sitting in the driveway, no begging for a new video game, paint ball with friends, or plans for homecoming. There was only me, my three younger kids, a birthday teen several hours away, and deafening silence.

I couldn't post on FB. I always post photos and sweet comments about each child's personality on their special day, but I couldn't do it. I don't often struggle with the comparison factor that drives people to quit social media to avoid the steady diet of carefully edited words and photos- but last week? I could barely touch the blue F icon on my phone to open the endless stream of daily fodder and initiate the familiar scrolling that has become part of my mindless routine.

Last week was hard. Hellish. Ugly. I'd had a phone call earlier in the week from a no-nonsense nurse at the facility where he's living who delivered news to me that literally knocked me off of my feet. I fell to the ground in sobs, aching, as her perfunctory words ravaged my heart. Supposedly he'd been in an altercation with another resident. It had become one person's word against the other. The few details I was given stole all of the breath from my body. As I struggled to draw enough oxygen into my lungs between loud sobs under the still, starry, autumn evening, she asked if I had any questions. I know her job sucked. I know hearing my hurt was difficult, and I'm quite sure she wanted nothing more than to complete the task she'd been given and hang up the phone. But it stung. I managed to laugh sarcastically through tears and tell her that I had none. "I can tell you're teary, so I'm going to let you go now. Have a nice night". <click>
 I must've looked like a character out of biblical times- wailing in the dirt, my forehead pressed into the cold ground as I rolled over into the fetal position. I'd been burning leaves before she called, and was covered in soot and ash- a fitting backdrop for the rending of my heart and spirit in lieu of my clothing.

I was broken. My precious son, who'd been making such progress, seemed to have had a big setback. I was reeling. He called moments after the nurse escaped my crying, and once he realized I was upset, made sure to tell me the incident 'never happened'. I tried to maintain hope. To entertain the possibility that the story I'd just been given by the nurse was flawed. But our difficult history, and the long list of circumstances where he'd been dishonest, or manipulative, or sneaky, washed over any ember of hope I was carrying and left only grief, loneliness, and hurt in its wake.
I tried to reassure him I was processing. But I knew my words were hollow and fell flat. I hadn't had time to process what I'd just heard, much less get myself to the place where I could encourage him in the mess. He changed the subject to his birthday- secure in the knowledge that he was telling the truth- but I couldn't follow him in the happiness; and I broke some more. His 16th birthday. A big one. The last big one before 'adulthood' in the eyes of the law. A birthday we should be celebrating, enjoying, anticipating... and I only felt robbed. Shortchanged. Angry. Alone.

The short version of the story is that he was telling the truth. It never happened. The longer version had me barely breathing through grief for days, carrying hurt and sadness around that I had no idea what to do with.
I called him on his birthday. Too broken and weary to sing loudly- which I would usually do. Guilted and shamed for my inability to rally myself in the moment for a milestone event the world tells us we should celebrate.

 A grocery store sheet cake in a conference room on Sunday in place of his much loved homemade coconut cake. A few simple gifts which he was excited about, lots of hugs, and then games in the cafeteria for a couple of hours. Enjoying ourselves, sharing some laughs and smiles, and time together- but hovering over us was the weighty cloud of our circumstance. One I'm grateful for and angry about at the same time. A circumstance few people in my life can begin to comprehend- and one I work hard to not think about much. I ached as I watched him- the small child almost gone, being replaced by a tall, muscled man who talks with his large hands, charms with his stunning blue eyes, and entertains with a keen sense of humor.

My life has become very small again. I move in and out of this space in relationship to the level of stress and grief present in my life. There are times I'm carefree and have the ability to engage with a larger group of the people I love, and who love me, and then there are times I retreat. Unable to talk or expend the energy to engage. There is nothing left in me after work, kids, life.. to give anything else to anyone.

One of the hardest parts of raising a child with a chronic illness- whether physical, mental, emotional... is the grief that is never resolved. There is no closure for anyone. There are victories and progress and surprising strides made- and then, like the 16th birthday that came and went without fanfare- there are those times where the stark reality of this life is laid bare against the vibrant, technicolor idealized life I anticipated; and I feel punched in the stomach, sent stumbling backwards, trying to steady myself again.

My counselor said what I already know. The grief comes because there are still places in me where I hold on to my idea of what 'should have been'. This is nothing new to me, and often, I'm able to embrace the difficult, painful, beautiful, rich life we have- in spite of its opposition to the life I dreamed I'd have. But sometimes, I get angry. I want to punch someone or something for denying us the 'normalcy' I long for: The mundane, typical, frustrating teenage angst so many parents wrestle with. I want to apologize to him- beg him to understand how the mental illness, the autism- none of it is his fault. Instead, I keep walking forward. Screwing up royally, falling short over and over, frustrated at myself for not being further along, then reminding myself of how far we've come. My counselor reminded me quietly through my tears last week- none of us are really living the life we thought we 'should' have. It's different for everyone, but the truth is that we don't get to leave the confines of this planet at the end of our lives without having experienced pain and disappointment. While that doesn't offer much solace to a broken mother's heart, it gives me pause. It's my choice. I can succumb to grief and shatter into a devastated shell of a woman, or I can grieve and be gentle with myself. Patient in the process. Real about the hurt and disappointment, and guarded in how I spend my time... protective of my heart and state of mind.

Should have been will kill us if we let it. Suffocating the beauty found in the what truly is. I've not yet come back to the place of joy and energy I enjoy inhabiting- but I know it will come. I've learned to not try and force it anymore. To recognize that the pain is a tool, a teacher, a refiner. Nothing is wasted, and I've no doubt this most recent dance with grief will do the work it's meant to do. In the meantime, I've pulled inward to preserve my emotional energy. If you've wondered where I've been- now you know, it's not you.. it's me. And I promise I'll rise once again, <3

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.

Rerouting

I've started this post several times- not exactly sure how to peel off parts of myself that I often long to hold tight, yet understanding that my heart for change in this world often means allowing discomfort to lead me to share things too many keep hidden.

My oldest son has been in Hampton for almost two months now. He's at a residential treatment center to address the struggles that have plagued us for well over a decade.

I used to read a blog by a mother whose daughter had bipolar disorder. Her daughter lived almost exclusively at a residential treatment facility and will remain there long term. I remember my feelings of confusion, sadness and admittedly; judgment. I couldn't understand how a mother could 'give up' on her child in such a way and leave the raising of her to others.
Life has a funny way of bringing us face to face with our own bias. Our criticism of things we can't possibly understand often sizzles in the fires of similar circumstances later on in our journey.

The truth is that this has been the best thing that has happened to our family in terms of support and treatment. He was ready to go and did so with a positive attitude. I have told him over and over that his willingness to not only go to the program, but to engage in it wholeheartedly, has been a gift to me. I couldn't be more proud of his courage and hard work. Driving away from the building in silence for the several hour trip home, I was grieved over the stark reality of our lives, but filled with gratitude for the support.

Mental health treatment in our country is broken in every way. Millions of people languish under sub standard care, or none at all, and many more of us fight a losing battle to get the help needed for our loved ones. The disconnect between all of the players in his care has led to many misdiagnoses, a lack of support and understanding in the school environment, acute hospitalizations, dozens of medications, chaos at home, and years of hurt and distance in the family relationships. What this incredible facility is providing is a streamlined team of engaged and connected support members. He goes to school there- and his teachers are part of the team. He has a nurse, a caseworker, a counselor, an autism educator (to help him understand how he operates in the world), an art therapist, a doctor, and other support staff to encourage him and push him to be the best young man he can be. The entire team shares what they observe, recommendations and suggestions. It creates a holistic approach that addresses each part of him- mind, body and spirit.
The staff there love him, and, they love working with each other. Their passion for my son and his incredible gifts and abilities make my chest swell with pride. I am aware that many facilities don't have this incredibly wonderful attitude and atmosphere, and I'm ever grateful that our experience is proving positive.

This program is one of the longest in the country. Their success rate is sky high with patients leaving their treatment never again needing acute hospitalizations or bumping up against the law. Their expectation is that this level of treatment is the last stop on the tumultuous ride of health- and they pour everything they have into the patients there to ensure that it happens.

I go to visit and have counseling with him almost every week. The drive is hard and long- but it's a small price to pay for the healing it's bringing. His counselor is a seasoned autism expert and is adept at giving words to dynamics I have felt but couldn't address until identified. The work he is doing through his transparency and openness is bringing incredible change that is even evident on him physically. His eyes are sharp and clear- his growing, muscled body is stilled in peace and self acceptance. His voice is steady, and his ability to articulate his emotions, frustrations and needs is blowing me away. While he works there- we work at home. Undoing dynamics long etched into the structure of our family. I am digging deep into the places of fear, codependency, feelings of failure and defeat and pulling out roots of poisonous paradigms that have no place in a healthy family.

It's disappointing as a mother to come to the place where treatment of this level is necessary- the team-centric support we are getting as a family unit is what I've longed for for many years- however, it's simply not available here outside of residential care. Had he been angry with me for taking him, I may have suffocated under the weight of grief and guilt- thankfully, his eagerness to get better and feel better and do better and be the healthy man he is, has inoculated me against that wounding- and I'm left free to revel in the incredible changes our family is experiencing.

I don't know how long he will be there. While he's doing better than I dared to dream, this isn't a story of unicorns and rainbows. It's hard work for all of us. It's been almost two months now, and we all have a long way to go. It could be up to a year before he comes home again to stay. But I trust the process. I trust God. And, I'm learning to finally trust my ability. The program requires all of us to be ready for him to come home- we get day passes with him to take him out, then move on to overnight passes, then weekend passes. Easing us all back into life where we can try out the new dynamics and process through the changes with the support of the team as we learn. The education for all of us, the family counseling to address years of misunderstanding, the love and care of his team, and the positive attitude of my incredible young man have lifted my heart and soul into hope again. I can see his future now- and feel like I did when he was a chubby, wide-eyed newborn- his future is bright and the sky is the limit.

Living Outside the Chaos

I’m really quite good at managing chaos. I’ve had lots of practice, and have become a warrior of survival. I’m proud of this, and have learned not to fear much as the confidence in my ability to weather massive storms keeps me in peace.
But.

I’m not good at managing the manageable.

I’ve written about my oldest son and his battle with mental illness. He’s 15 now, and the ebb and flow of his sickness has lasted for more than 13 of those years. I have 3 other children, all younger than him. We have lived in the shadow of his illness for the entirety of their lives. 

Things are better now. While we still have situations that knock the wind out of me (as recently as earlier this week), the violent chaos that was normal in our home for more than a decade has waned. With his maturity has come some ability to push back against coping skills of aggression and destruction. I’ve come to a place of trusting my ability to parent him well, and rather than lean into the storm and exacerbate it with my own fear and anger, I’ve learned to utilize authority and boundaries in a healthier way. The last nine months has been the longest peaceful stretch of my parenting career. Even during this most recent drama, there has been no violence or aggression. 

Yet, I’m struggling.

I’ve been dating a man for the last two years who has seen the dynamics of my family, who has seen the shocking aggression that can pour out of my beautiful first born, who has seen the fear in the faces of my other three, the sometimes unhealthy attachment that has been forged between me and my kids, and who has seen me cry and work and do everything I can to help my family. He’s bided his time, and occasionally he’s spoken up- asking questions and exposing what I already know: I am not good at managing the manageable. Over the last year there have been conversations that he’s initiated that have left me angry, sullen and sobbing. (Never his intention, and always a direct result of the wounds it picks at.) They say that the truth will set you free, but first it will piss you off.
Last night was the second time we had a conversation where the things coming from his mouth seemed to be directly from the heart of God- piercing my soul, shredding my heart in the knowing, and rendering me silent as I knew it was sacred. My flesh wanted to rise up and scream in defense, but my soul knew it was everything I needed to face; and I was grateful to have someone willing to face it with me in love. Beauty doesn’t equal pain-free. Love doesn’t mean avoiding hard places. I ached. I sobbed. I heaved with grief and fear and disappointment.

The difficulty now is that while living in a constant state of chaos, I have never learned how to live in the normal. I did everything around the house while trying to keep my kids safe. I never had breathing space to teach them simple chores or provide a structured schedule. And now, I’m exhausted. My children rely on me to do everything. They don’t pick up after themselves, or only do so with my prodding and their attitudes. There isn’t much structure, and what is there, revolves entirely around me. It’s not healthy for any of us, and it’s not feasible for me to keep this up. But the reality is this: I have no idea how to do it. I didn’t start small, with toddlers who were pulling chairs up to the sink beside me to learn how to do dishes. I didn’t have homework time at the kitchen table in the evenings because many evenings were spent fighting darkness and aggression, and sending children into my room to stay out of the path of their brother. I don’t have a family-known set of rules, expectations and consequences because my oldest (who, by default, sets the example for the others) is not motivated by either reward or consequence. Parenting him has been a continual shifting of what might work for this day, this situation, this mood. It’s left the others wondering what the constants are… and, to my grief, they come up empty.

I look at our dynamics, the lack of maturity and skill in my children, and I feel despair. JJ spoke these things- things I’ve already known- things I would rather run from- and called me to action. Part of me wanted to launch myself across the table to shove him to the floor, and part of me wanted to run away and leave the work to someone else, and part of me was broken… but part of me was grateful. His delivery was kind and raw. He reminded me of my strength and ability and asked why I didn’t infuse this situation with those characteristics. I dropped my head into my hands and sobbed. I could barely speak and he had to ask me to repeat myself several times. I don’t know how to fix it. I know the way things are right now is not good for anyone. I know that you telling me I work too hard at home doing things the kids should be doing is true- but I’m telling you I’m afraid, lost, and honestly, I am not sure I believe in myself as much as you do.

I have allowed things spoken to me when I was younger to take deep root and affect my ability to parent the children God gave to me- with my personality, skill set, strength and energy. I can tell you that logically, I know I have been paired with these children for a reason. That they have things to teach me, and I them, but the strangling vines grown from words once thrown into my soul have siphoned off the nutrients meant for healthy growth. I hear Failure. Flaky. Impulsive. Flighty. Unable to finish anything. Easily Bored. Lazy.

My love language is words of affirmation, and I haven’t loved myself well as I’ve given head space to words of destruction instead.
 

So next week, I return to counseling. I’ve given years to stabilize my son, while waiting for the right time to seek stabilization for myself. I can no longer delay that process. His well being and the well being of the others depends on my health. I can see where the cracks are and need help processing the junk that is preventing me from doing what needs to be done. I need someone to help me pull out the vines and learn how to live in the space between chaotic events.
I’m nervous at the level of emotional energy this will take, but I’m ready to move into it and out of it in order to live well the life I’ve been given.