In a Moment’s Notice: Caring for a Child with Mental Illness
Our guest blogger is Lori Gertz. Lori makes her living as a
strategic marketing consultant, writer, and reiki master and is
currently studying to be a homeopath. She faced the ultimate Sophie’s
choice—to give up the daughter she had adopted as a newborn or to keep
her, even though she and her husband, Craig, could not ensure that their
other children would be emotionally and physically safe if their
troubled sister remained in the family home. She is writing her book, Mama Can’t Kiss It Better: An Idealized Motherhood Lost. She
has created a resource for parents struggling with many of the same
issues on Facebook.com/lorigertzauthor, Twitter @lorigertzauthor,
www.whenmamacantkissitbetter.blogspot.com and www.gertz-pileofideas.blogspot.com.
By Lori Gertz
My most important role is as the mother of 3 children under 12. One of my children has polarized the last eight years of my life as her mental health deteriorated far more rapidly than I could have ever conceived as I daydreamed about her “gotcha” day and stared at her adoption finalization papers in a frame on my desk.
This is the story of my daughter who grew in another’s womb but is as much my daughter as the two that grew in mine. Sadly, her birthmother was an addict and while pregnant, she self medicated, drugged and drank excessively. We didn’t find out until she was nearly 3 years old, and within 10 days of our finding out, her birthmother committed suicide, overwhelmed by her own mental illness, struggles, secrets, lies and guilt.
Emily was first diagnosed with Fetal Alcohol Spectrum Disorder in 2007. FASD is a devastating legacy steeped in the preventable and unchangeable facts of organic brain and neurological damage caused by a teratogen* (alcohol) crossing the placenta. The 39th doctor we took Emily to assess her inconsistent and out-of-control rage and behavior diagnosed her in less than 5 minutes based on the physical abnormalities right there on her face. What he spared us that day, as we stared back at him through tears, was that over 90% of those diagnosed with FASD suffer from numerous comorbidities of mental illness.
In retrospect, I don’t know why this didn’t occur to us. A birthmother wouldn’t drink during pregnancy if she could stop, right? She was self medicating with heroine, PCP, LSD, crack, Oxycontin and when the truth came out through a relative who sent us the “don’t shoot the messenger email” alcohol was considered so benign it wasn’t even included in the list he knew she had abused when she was pregnant with our daughter. She was self medicating her own mental illness that she had suffered with rather publicly for over two decades.
Of course, being aware of the existence of mental illness and managing it are two very different matters. We didn’t have to wait long to see how the genetic predisposition to it would affect our daughter.
Her next diagnosis of Mood Disordered (Not otherwise specified) would come at age 4. Bipolar would be assigned at age 6. Reactive Attachment Disorder would be kicked around for years but finally diagnosed at age 7.
The diagnoses are only the beginning. The multiple hospitalizations, manic-cycling and Bipolar episodes are as much a part of her life as the chemical cocktails chased by apple juice.
Living in the now, and keeping mood charts are the blueprints for life going forward. Of course, that’s so much easier said than practiced.
As anyone could imagine, having experienced the tremors of inconsistent behavior for many years with a mentally ill child prior to diagnosis, we all enter the room exhausted and drained to begin with. Those conditions don’t necessarily set us up for success even when a psychotropic protocol is managing our children for stability. It’s also really important to note that, at least in our family’s case, there are two other children growing here. Those two other children will struggle all children do during their early and teenage years. It’s like a big crock pot of ingredients. Left unwatched for too long, even a simmering pot will burn its contents.
The tension among all of us who have been walking on egg shells for years is not the best foundation for keeping things calm. Our family life, for lack of a better way of putting it, turned into a never-ending cycle of awful until someone stepped in with some support or respite to help us get back to a leveled place from which to start over again.
Other than the hospitalizations of our daughter and more recently the guardian family who has cared for her on a longer-term basis, we found some respite in the occasional babysitter or relative, some of the few willing to take the risk of whatever our daughter would and could dish out.
The other children are often caught in the middle of either our yelling and emotional upset or Emily’s tantrums. As parents, we are on call to be loving and fully engaged all the time. We need to be ready at a moment’s notice to either tear a child off the back of another, stop a fist, or dole out positive feedback to any and all of them.
There are a lot of breaking points.
Sometimes, it’s caused by something as little as laundry on the floor or medication non-compliance, but regardless, it’s what causes many scenarios in which my husband or I lose it and need to be coached back on to the tightropes we walk daily.
We are walking examples of the lessons of effective problem solving and while we struggle to maintain a sense of balance in our home, despite the mood disorders and general stress and anxiety, we are always teaching all three of our children, how to de-stress and make time for oneself and one another.
Our lives together are filled with routine. Routine bedtimes, routine meal times, scheduled and managed TV content and time, routine reading time, scheduled homework time- you name it, we have a scheduled time for it.
Schedules provide a level of consistency and boundaries for children that, although it feels rigid to those outside, provide a sense of comfort for our kids. When Emily’s time is structured, she knows what is coming next. She knows what to expect and isn’t living in a fearful state unknowing of what might be around the next corner for her to respond to. When Emily is in a relaxed state, we all follow.
When Emily is living with her guardians or is otherwise stable in our home, it gives some “room” to the others to step out of their comfort zones and really “act out”. I’m told by therapists that this is something that we want to see. This is showing that our other children are taking advantage of the space created by her stability to grow and experiment, in a safe environment, with forms of behavior that are less than desired otherwise. This is good, because it is better for them to experiment with these behaviors with us than outside the confines of our home.
As healthy as it sounds, and I respect that it is healthy, the fact is, there isn’t a minute of parenting downtime unless we schedule it. If it’s not an issue relating to Emily or her challenges, it’s one relating to the others.
One of the most interesting personal struggles I have come upon is in letting myself enjoy periods of stability in lieu of worry about when the shoe will next drop. With Bipolarity, there are therapies to help those suffering with it develop key coping techniques when they are stable so they will have them to rely on when they are experiencing mania or cycling. Emily is still so young, those therapies are quite immature.
Bipolar disorder is a lifelong illness that changes as a person grows. How it will change as Emily gets older is entirely unknown. Had I guessed at how it would have manifested itself from the start I never would have come close to how it has evolved in momentum. The more I research it, the more I realize that our families (both ours and our guardian family) will be raising her on a wing and a prayer and in increments of stability and instability as she experiences the rapid cycling through her life.
Professionals suggest that intervention strategies and maintenance treatment in both the area of CBT (Cognitive Behavioral Therapy) and a routine and ongoing assessment of her psychotropic medications are integral to satisfaction of life for all who suffer from as well as all who live with those who suffer from Bipolar Disorder.
In Emily’s case, her FASD and RAD diagnoses muddy the Bipolar waters. Knowing whether it is a cause and effect synapse misfire or an intentional impulsive action taken by her will always be subjective to the knowledge at hand. And, of course, she will not always be 8, so when she is no longer reliant on us for care, there is little chance we will know the exact scenario that played out in one of her outbursts or meltdowns and what, if any triggers were the culprits.
Bipolar Disorder is unpredictable by nature. It is chronic, cyclical, and is different every time it comes around.
I worry deeply that her emotional quotient will not increase as she ages, lending itself to even deeper ramifications as she approaches her teenage years and her hormone levels change. If dealing with the pain and self esteem challenges of an 8 year old induce suicidal ideation and intention, what will happen if she is rejected by a boy she has a crush on or if she fails her first attempt at a driver’s license in her teenage years? In my dream world, she still has an opportunity to experience the highs and lows of a typical American teenager.
Typical things that crop up over time might include continued defiance that lingers, regression from a routine as basic as hygiene, uncontrolled aggression or excitability, impulsivity, isolation, withdrawal, feeling helpless or hopeless, lying and risk taking, academic struggles, bossiness, grandiosity, oversexualization, feeling teased, paranoia, or increased conflict at home or school. I have concern that she will seek love outside of herself to try to fill her “missing piece” of self esteem and in doing so will come upon great harm by those who have less than noble intentions with her. She is a beautiful little girl with a large heart, missing brain matter and a serious chemical imbalance.
Whether she is living at home with us or with her guardians, we as her parents (and she is blessed to have four, at this point) set the tone for the ongoing advocacy that is needed to keep her safe and enable her to have the best possible life. If you, too are struggling with a challenging child, one of the resources that I suggest for further reading is What Works For Bipolar Kids by Mani Pavuluri, MD, PhD. Nothing hits home for me more than her Chapter entitled Parenting with Poise, The secret Ingredient for Success.
In this chapter, Pavuluri covers how heavy the burden of parenting a Bipolar child is. She says, “There are no shortcuts. You must be the stronger one here. Wisdom, not logic is your savior. Understand that your goal is not to prove to your child that you are right, your goal is managing your child! Use diversion creatively and frequently!” She continues, “Ironically, when we reach “the right place” inside ourselves as parents, we can embrace the unpredictability and even come to see it as an interesting part of the disorder.”
Maybe I just look for hope everywhere I think I can smell it, but I hear it in Pavuluri’s words. She has, of course, tempered her positioning so that we, as the parents of the child diagnosed with mental illness, will feel the gravity of the unpredictability yet still remain hopeful that all the efforts we employ to help our child will be for the greater good.
* teratogen- An agent or factor that causes malformation of an embryo.