I recently attended a four-day parent workshop at Jack’s therapeutic boarding school. This is an opportunity to spend time with your child, meet the kids and their families, and learn and grow as a parent. It is one of the few times during the year that you are with families who truly understand what it is like to raise a child with significant behavioral challenges.
For a few days, our experiences and challenges are normal.
The curtains are drawn wide open. No judgement, no embarrassment, just unconditional support.
As I was listening to others, I reflected on my personal growth over the past ten years and recognized three unexpected, beautiful destinations along the way.
Embracing the Scary World
Both of my boys attended a nurturing, family run private elementary and middle school. In addition to outstanding academics, the kids are sheltered from many of the normal influences found in public-schools.
I loved that there was an innocence about their experience. In hindsight, I think I loved the fact that I did not have to deal with the uncomfortable and scary stuff.
During Ben’s first three psychiatric hospitalizations, I was horrified and stressed over the types of behaviors he was exposed to. Ben’s third academic placement was with boys between the ages of 10 – 21 with serious behaviors. My sweet innocent little boy was now dropping F-bombs, threatening my life, and damaging our home.
For years I kept my blinders on. Ben was not one of “those kids”.
Jack is now fully entrenched in the therapeutic world. He too has been exposed to the very things I was trying to protect him from. Drug overdose, alcohol misuse, suicidal comments, incarceration, porn addition, swearing, racial slurs, and so on.
Having gone through the shock and denial with Ben, I am now able to have open conversations with Jack. We have incredible chats about what he is seeing, hearing, and saying.
Jack, at a very early age, is gaining perspective on choices and consequences. He is able to articulate who he wants to be as a young adult.
Being exposed to language and high risk behaviors at an early age is not necessarily a bad thing. It has provided us the opportunity to talk openly about life’s realities and strengthened our relationship. Both kids know there are no topics off limit.
Just because my boys swear, threaten, and act out does not make me a bad parent or them bad kids.
Not Expecting Understanding
What I have come to accept over the years is that unless you have lived this world, you cannot truly appreciate or understand the decisions we make as parents, the emotions we feel, and the impact a special needs child has on the family. People will judge, question our parenting, and assume they understand or could do better.
And you know what, that is OK.
I cannot expect to truly understand what it feels like to have terminal cancer or to be transgender.
I cannot expect family and friends to understand what it feels like to receive a call from Ben’s sixth school saying he is a great kid, however, we can no longer support him due to his behavior. Or to be told your child is on suicide watch for the third time at age 13.
Prior to our many embarrassing and humiliating moments with Ben and more recently with Jack, I was as judgmental as the best of them.
That will never be me. My kids will have manners, show respect, and listen to adults.
Well, my kids do have manners, show respect, and listen. However, when anxiety kicks in, the Tourette’s rears its’ head, or Ben is rapid cycling, all bets are off.
Once I let go of needing others to understand, I found confidence in our decisions and no longer felt the need to justify our choices.
I will always hope for greater understanding and do my part to advocate and educate.
I am human and still have my moments when that voice in my head is giving someone the business. I work hard to recognize that voice as a warning sign that I am going down an unhealthy and unproductive path and to find ways to let it go.
Finding Me and My Peeps
When your child struggles with mental illness and has significant behavioral challenges, your world becomes magnified. I became hyper aware of the environment in which we lived.
I knew which toilets made a loud noise when flushed.
We avoided restaurants where the staff erupts into song for a customer celebrating a birthday.
All computers were in lock down, credit cards and knives were hidden, and on and on.
I became acutely aware of how our world was shrinking, I felt isolated, and I lost confidence. I was resentful of families planning get togethers and I was mad we could not go camping with friends.
Typical school activities were beyond stressful. Play dates and birthdays parties were non-existent.
Instead of becoming a soccer mom coordinating car pools, I became a psychiatric mom sweating the small stuff.
I withdrew from family and friends. Relationships were strained and friendships faded. Being independent and private, I never participated in support groups.
Over the years, I have slowly redefined my self-image and reshaped expectations.
Recently, I have become pretty good at putting my oxygen mask on first before taking care of the boys. I have found a group of friends who embrace our messiness for what it is. As a family, we have found confidence to share our story and do our part to deconstruct the stigma associated with mental illness. And most importantly, my husband and I now make date nights a priority, even if just for an hour once a month.
Trust me, I still have my pity parties.
However, when I take care of me first, I am able to better enjoy my family and appreciate the small successes.
Back to beautiful destinations, twice in the past three months I have found myself in the company of parents who live it and get it. As I shared early, when I was in chaos and lost confidence I was not ready to embrace the support of others going through the same thing. Today, I have solid footing and a healthy perspective. I am beyond grateful for the company and unconditional support of parents with shared experiences.
This is a brutal and unexpected journey, one that I did not sign up for. There is no handbook for how to grieve, feel, and find your way as a mom, wife, and individual. There are no timelines for getting your act together, or like me … giving the illusion of having my act together. This is an individual journey with no right or wrong.
I am no good to myself and my family if I do not take care of me. This is a draining and never-ending marathon. Pacing myself is critical.
I say often, I do not wish these challenges on my boys and family, however, I would not trade the people I have met, my perspective on what is important in life, and the strength I have found for anything.