I’ve been to at least 10 IEP meetings in 8 years. The teacher has her own ringtone as does the
school nurse. We are on a first name
basis and sometimes recognize each other just by voice by the beginning of
September. Christmas gifts each year
easily total 20 for the myriad of teachers, instructional aides, bus drivers
and everyone else who have not only crossed our path but have walked along it
with us for most of the year. In one of
our most trying years, the gift tag said “Sometimes I’m naughty, sometimes I’m
nice. Thank you helping me learn to do
right.” I realize humor is the key to
keeping friends in this journey. I
apologize a lot. I thank people A
LOT. I cry, I laugh. I dream of days of health and happiness for
my son followed by days of fearing this is not possible for him….ever. Whenever we hit a stretch of relative
stability I first hold my breath thinking it’s too good to be true before
slipping into a world of contentment and “normalcy.” I become naïve, going along with life as if
my child isn't sick, so very sick…and always will be.
Psychotropic medications are a miracle. They aim to correct faulty brain
functioning. They make neurotransmitters
communicate like air traffic controllers.
Chemicals, which are otherwise void, are produced in sufficient
quantities. The brain is healthy, even
if bathed in man-made chemicals which can be toxic to the rest of the body. The artificially healthy brain allows one to
make the choices based on the things we have been taught on how to behave to
blend in with society. When my son was 4
½, I cried when the first psychiatrist we saw, at the very first appointment said
my son needed an anti-psychotic medication.
I wasn't surprised, just
saddened that my baby wasn't well. I could
hear the nay-sayers, often parents who have never
struggled to keep their child and those around her/him safe in the way I had,
saying I was pill-pushing as a way to be a lazy parent. I
shoved those thoughts deep down in my soul so I could help my son. We readily agreed to medication, but not
without guilt and shame because of the way society admonishes this
approach. I also questioned it myself. Had I tried hard enough? What had I done to cause this? Was I a bad parent? What will this do to his body…am I killing
him? Eventually I settled with the
truth. If I didn't allow modern medicine
to help him, I would be killing him. He
would remain suicidal, be a danger to our family, engage in self-harm and
continue to wallow in the misery that his life had become. I could not protect him from the danger of
this illness by myself.
Because of the flood of emotions that come with the ups and downs, it was nearly impossible for close family, coworkers and friends to hear about our struggles. What some don’t know about mental illness especially in children) is that it comes with plenty of entertaining anecdotes. I've learned this to be true both through my son’s experience as well as my professional experience as a social worker in children’s mental health services. It’s an understatement to say my son’s personality made the entertaining anecdotes epic. The events usually came out of bad situations, as a symptom of his brain disease. If I didn't laugh, I would cry (uncontrollably at times) or die of shame and humiliation because my son had done something far outside of the bounds of social acceptability, again. People came to ask if there were any more “Nick stories” because a laugh was sure to follow. Let me tell you – I could write a book about the escapades of my son. From covering a dog in syrup, washing his hair in the aisles of Wal-Mart or the off-the-wall way he interprets the world, the stories had me in stitches. Some were not so funny, but odd. All you could think was “what the h@ll was he thinking?” I still laughed because it was so unusual and explainable I didn't know what else to do. Once the humor went away, the tears fell. My son wasn't a comedian. His brain was being mean. The brain does some incredibly cruel things to us when it isn't healthy. However, he learned to embrace his ability to amuse others. He’s a people pleaser and loves to make people happy. He’s also a resilient kid who has learned to make the most of the life he has been given.
I share frequently about the way our family has endured
mental illness. I don’t say suffer. Suffer makes us victims and I refuse to let
that happen to myself or my child. We
endure because that means we have “[held] out against;
sustained without impairment
or yielding” to
this monster of a brain-based disease. I
do not seek pity or sympathy. I seek
understanding and compassion. Perhaps I
also share because this is a journey we have taken alone, aside from a few
family and friends who we have come to lean on.
Don’t be afraid to ask how we are, if the symptoms are worse or better. Don’t be afraid to ask about which you do not
understand. While I share openly about
my son’s journey I also have a journey of my own. It’s not nearly as exciting nor do I remember
it clearly because I wasn't outside looking in.
For now, I behave oddly, sometimes having the social skills equivalent
to a dog. I’m intrusive, impulsive and
hungry for attention. I jump around in
conversations and thoughts which can be annoying. It’s okay to stare when I am like this, but
stare to learn something, not to judge and wonder what the heck I’m
thinking. I am acutely aware of my
socially unacceptable behavior, trust me, I am.
They often come out before I notice.
I am usually too excited to have human interaction. I am excited to share my thoughts and
ideas. Please forgive me, my brain isn't healthy, the medicine isn't “quite-right” and I've ran out of options to get any
better (for now).
All of this brings me to this piece, which
was shared by the Balanced Mind Foundation (www.thebalancedmind.org). I hope it helps you shift your view (if
different than your own) or reinforce your determination to walk this journey
with those of us who are enduring this disease.
No One Brings Dinner When
Your Daughter’s an Addict
(credit: Larry M. Lake via www.slate.com; posted November 8, 2013)
As always, thank you for taking an interest in my life
whether out of genuineness or curiosity.
