A Journey toward Hope

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When a person becomes a parent, nothing is ever the same again.  For better or worse, the child changes everything.  During the stressful times, we wonder “how many more years until he turns 18?”  During exasperating times, we mollify ourselves and think “he’ll learn when he’s 18 and on his own!”  In reality, they are always our children, despite how old they are.  And whether they want to acknowledge it or not, they need us regardless of how old they are.

Never is this more true than for a family raising a child with a mental health condition.  It’s a long road and there’s nothing magical about the age of 18.  Or 21.  Or 35.  Or 55.  A child with a mental health condition, much like a child with a physical health condition, may be reliant upon mom and dad for many more years than their siblings and peers.

It’s exhausting.  I know this because my 19 year old son, AJ, has a mental health condition.  At 3, he wasn’t speaking conversationally or even using words to describe what he wanted or needed.  But he’d sing the alphabet over and over.  He’d count to 100 and beyond.  He knew his shapes and colors.  But spontaneous language just didn’t interest him.

When he started pre-school, the rages began.  Unexplainable, intensely emotional, often frightening outbursts of frustration when he found a task too difficult or when there were disruptions to his routine.  We pulled him out of pre-school where he’d already completed the kindergarten curriculum. We kept him home, hoping it was just a matter of maturing and catching up with his peers, before we enrolled him in regular school.  He started 1st grade a few months before he turned 6.

But things didn’t improve.  The rages continued.  They were unpredictable and disruptive to the rest of the class.  Phone calls to me were a frequent occurrence and I spent hours in meetings with school personnel and child development specialists trying to figure out what was wrong.  AJ didn’t fit any specific diagnosis.  Autism Spectrum Disorder seemed the most fitting – until you considered how he sought out social connections with his peers.  This seemed to fly in the face of the ASD diagnosis.  Children on the Spectrum tend to avoid social interaction, not seek it out as AJ did.  He had trouble with appropriate social interaction to be sure.  He perseverated on topics no one else cared that much about.  He insisted on specific structure and order to his play.  But thankfully, his peers were forgiving and we were lucky that the children he went to school with were patient and kind.

Until 4th grade when things got worse. Not only were his peers beginning to shun him but the rages intensified.  Therapeutic interventions weren’t working in the classroom or in the therapist’s office.  The only time we saw the little boy we knew and loved was at home where his environment was stable, known and more or less under his control. 

One day in late October (my birthday as it turns out), the assistant principal from his elementary school called.  In a rage during a morning writing assignment (the one surefire type of assignment that would set AJ off), he screamed in frustration that he wanted to die. 

At the age of 8, through his tears and his screams and his red and swollen face, he told the assistant principal, “This is too hard.  I just want to die.”

We had already been contemplating homeschooling as an option and following this horrendous suicidal proclamation, we moved forward quickly. However, we continued to seek professional help.  We thought if we could give him some breathing room to try different interventions without the daily stress of going to school and being inundated with a never-ending cycle of frustration, stress, and failure, maybe we could find a break-through that would set him up to return to school someday better prepared to handle the expectations.

In the winter of 7th grade we were still homeschooling when AJ announced he wanted to go back to school in the 8th grade.  He missed his peers.  He felt different than the other kids he knew.  As both his mom and his teacher, our relationship was strained.  We spent entirely too much time together and neither of us was afraid to admit it. We spent the summer preparing for middle school behavioral expectations.  We practiced what he would do when he felt the frustration growing. And we sent him back out into the world to do battle with his emotions, believing we’d armed him as best as we could.

It didn’t work.  By the middle of his 8th grade year, the school told us they couldn’t manage his behavior.  He was too disruptive to the classroom environment.  I learned the lingo of the school system all over again – the 504 accommodations, Individualized Education Plan, Behavioral Intervention Plan. Nothing worked. 

They moved him to a special education program, in a different school, where the classes were smaller and he was surrounded by kids like him.  These kids often irritated him because of their own special quirks, behaviors and needs.  It only fueled his agitation and frustration and the feelings of being different, odd and weird. 

In high school, he continued in the special education program.  They called it a “school within the school”.  So while he walked the halls and was surrounded by his age peers, he spent his classroom time separated from them, in classrooms with 8-10 kids much like him. 

In 9th grade, he was taken by ambulance for his first psychiatric hospitalization for suicidal ideation.  There would be two more hospitalizations – one where he was escorted from the school by the Student Resource Officer in handcuffs – before they finally moved him in the middle of 10th grade to a school an hour away that was called a “non-public special education facility” that was populated almost entirely by other students on the Spectrum.

It was there that the first discussions of mood disorder popped up.  I always knew the ASD diagnosis didn’t quite fit.  I was both relieved and terrified that a diagnosis of mood disorder seemed closer to the mark.  I’ve spent my career working in non-profit mental health organizations mostly with adults.  Much of the behavior I was seeing AJ echoed the behavior of clients I’d been working with for better than 15 years.  I knew where we were heading.  I felt energized that we had a diagnosis we could treat and terrified because of where that diagnosis would take us if we weren’t completely on top of and diligent about AJ’s care.

I wish I could say once he was there, things got easier.  In some ways, they did.  For once, being around peers like him was more of a help than a hindrance.  He was still easily agitated by behavioral attributes displayed by some of his peers, but at the same time, he found a social support network of kids who were a lot more like him than not.  He went through so many of the “normal” ups and downs of adolescence.  His first love. His first broken heart. Prom. Graduation.  He continued to fight intervention from therapists and the doctor at the school, but he found a medication that worked (and still does to this day) for him. 

At the end of his junior year, he announced that he had decided to stop taking his medications.  He felt he didn’t need them anymore.  He believed he was better.  This is not uncommon among people with mental health conditions.  I’d seen it dozens of times in my professional career.  It never ends well but I knew enough to know that I just had to let it play out to its logical conclusion.  Don’t get me wrong.  I pleaded with AJ to take his medicine.  I bribed him with all the things he loved.  I tried to persuade him with dire tales of what would happen.  All to no avail.  I watched in silence and horror as over the next 6 weeks my beautiful son deteriorated to something unrecognizable.  I was scared of him.  He was angry and verbally aggressive.  The slightest irritant would set him off. 

One night, in a manic state and after refusing to turn off the computer and go to bed, AJ left me with no choice but to disconnect the modem.  Though clearly manic and very much not able to make rational decisions, I still believed it was important to impose natural consequences for poor decision-making. He became infuriated, cursed at me and chased me up the stairs.  I locked my bedroom door and, as I was on the phone with the police begging for them to come to my rescue, my baby boy kicked in the door of my bedroom.  I’d hidden the modem and he began to tear apart my room to look for it.  I ran downstairs and open the door for the police while he was distracted.  He was taken out in handcuffs that night and taken to the emergency room.  He cursed my name.  Told me he’d never forgive me for petitioning his admission to the hospital.  He spent three weeks in the hospital being stabilized on his medications again. 

We went through family therapy so I could explain to him how scared I was that night.  I told him how much he had frightened his own beloved dog, whom I feared would attack him in defense of me.  As he stabilized, he was remorseful, repentant and I believe truly frightened by his own behavior.  It’s not unusual that he can’t remember specific actions when he goes into rages but he remembered knowing he was scaring me and being unable to control his anger.  He promised me he would never again stop taking his medications.  He has not broken that promise to me and I hope he never will. 

AJ graduated from high school in 2016.  His “few months off to decompress” turned into a year fraught with fear about the future and an inability on his part to take any action or even think about his next steps toward adulthood.  It was a long, tough year filled with fits and starts, trials and errors and eventually an ultimatum to work or go to school. 

I’m happy to say that AJ is working now about 15 hours a week bagging groceries in a local chain store.  He still has times when he’s unstable and easily agitated but these episodes resemble panic attacks more than his rages.  Though not completely gone, those rages are fairly well controlled by medications now. They appear only when truly pushed beyond his limit and he is truly unable to make use of all the important skills he has learned.

We’ve learned to take things one day at a time.  He has aspirations for the future but he’s not ready to act on them and I’m okay with that.  Life will happen for AJ at his own pace.  I believe he’s doing what he can right now and part of that is learning how to be an adult living with a mental health condition.  He doesn’t like to talk about it but he’s alright with me talking about it as he realizes his story might help other people.  I volunteer for NAMI, giving presentations to high school students and parents about our experiences.  I’ve co-founded Family Wellness Alliance to raise awareness about mental health conditions and provide support to people who are living with a loved one with mental health challenges.  My way of coping now that AJ is stable is to give back to a community that supported us but to also provide some insight on what types of support I found helpful…and what types I didn’t find so helpful.

Like the school guidance counselor at AJ’s first high school who told me she’d seen behavior like this in her students before and the “outlook wasn’t good.” I honestly believe she was just trying to prepare me for the dark days to come. And it’s true there were dark days.  I’d been doing mental health work long enough to know the reality of what we were facing.  But in those words, she crushed all the hopes and dreams I’d had for my son and replaced them with nothing but fear and worry. 

I’ve forgiven her for that statement because in all other interactions I always found her helpful and supportive. I learned from that experience, though, that how we talk about mental health conditions and how we provide support to others is incredibly important.  The essence of hope and recovery must always be present because I truly believe that recovery is possible for people with mental health conditions.  And in AJ’s darkest times, in those times he really wanted to hurt himself because he just couldn’t take it anymore, it was my job as the person who loves him more than anyone in this world to make sure he had something to hold onto.  Even if he was angry at me for hospitalizing him or making him go to a new school, I was his lifeline to the hope that things could and would get better.  I only took that responsibility lightly once and said something off the cuff that made AJ think I wasn’t on his side anymore.  That I’d given up on him.  And while I’ve forgiven myself for that one moment of weakness during an incredibly stressful time, I always remember it when I’m at my wit’s end with him. I remember that I’m the one who’s naturally optimistic and hopeful against his tendency to always see the negative.  That’s what he needs from me.  And that’s what I hope to help others do for their loved ones. Professionally, I’ve seen stories end badly.  But that doesn’t have to be our story. 

And I’m hopeful that it won’t be.