Bipolar in the Nut House

Recently, I discovered an invaluable resource for families with a bipolar child. I would love to say that I found it just browsing the local bookstore, but the reality of it is that I found it in a packet of information that was given to me by the Biobehavioral Unit at Phoenix Children's Hospital where my son was "visiting" to help stabilize his medications.

I wasn't going to say much about this on the web or on our blog, initially. But as I sent out desperate prayer requests to our support system of friends and family, I looked back over all these years that we have felt alone and isolated, trapped by rages and tantrums and behavior that baffled us as well as the myriad of doctors we took our child to. I heard back from many of them, "I've been there. I know what you are talking about." I realized that there are so many more of us out there, parents of children with mental illnesses, and most of us have put on our brave faces and only shared our deepest struggles with the few brave and compassionate souls who were willing to listen to us, and more importantly, BELIEVE us. Not only that, but there are so many adults out there who are bipolar themselves and they, too, are often struggling alone and in silence because they know they will be rejected and ostracized if anyone knew.  And that is just NOT OK.

So I'm going to share whatever resources I can. I'm going to share as much as I can about our own struggle  without invading my family's privacy. I'm going to be honest. I want to be a part of tearing down the walls of fear and stigma associated with mental illness, and if I can do that by sharing parts of our story, I will. (Admittedly, I can totally see that we here in the Nut House are far from what anyone would term "normal" but we are also not extraordinary. Just everyday people dealing with everyday issues, only one of which happens to be mental illness.)

Thus begins the first in a (hopefully) series of blog posts having to do with how childhood early-onset bipolar disorder (COBPD) impacts family. If you have any thoughts, questions, or resources, please, let me know! :)

Faithfully,
Andie
The Nut House Mama

 

Excerpts from The Impact on the Family, Chapter 8 from  The Bipolar Child by Demitri Papolos and Janice Papolos, 2006.

Family life in a household dealing with a bipolar child is about as un-Pleasantville as it comes. It is a virtual stew of guilt, powerlessness, denial, anger, anxiety, fear, uncertainty, confusion, blame, and shame. These are all very ugly words that make us flinch, arousing feelings that most of us would do anything to avoid, but all are feelings that a family with a bipolar child has to endure for months and years at a time. (P. 246)

Parents are expected to deal with an illness that doctors not only know little about but also are wary of diagnosing in the first place. Parents are set adrift inside a house that has become a war zone, dealing with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from rage at the outside world for failing to understand what is happening to them to exhaustion in trying to deal with the child. And tucked into that welter of truly terrible feelings is shame – shame that one is unable to control his or her own child, and shame at what one begins to put up with and how abnormal one’s life has become… Often they (parents) can’t tell anyone in the outside world until the child has long been stabilized and the violent rages cease. Like battered wives, they present a brighter face to the world and refuse to have outsiders picture their child or them this way. (P. 248-9)

No childhood disability is easy for parents to deal with, but when one’s child is bipolar, one never knows when a violent rage will ignite. Parents describe themselves as always walking on eggshells. One mother said she never knows whether she’s going to be awakened with a kiss or a fist in the eye. Another mother described it this way: It keeps everyone on edge, on alert. He is so unpredictable that you can never slip into complacency for fear of ambush. We can’t go out to dinner without wondering what disaster might be afoot at home... (P. 249)

When people give unsolicited advice (such as in the grocery store during a meltdown), one mother girds herself and takes control without even speaking. She hands the advice giver a card while her son is on the floor kicking and screaming. On it is printed:

Thank you for your advice and concern. My son is suffering with early-onset bipolar disorder, a neurological brain disorder which causes him to feel very irritable and anxious and culminates in tantrums and rages such as you are now witnessing. Screaming and threatening inflame the situation and are damaging to this child. Because it is obvious that you are concerned about this kind of behavior, may I suggest that you contact the Juvenile Bipolar Research Foundation at 973-275-0400 to learn more about this devastating illness of childhood and – if you can – please make a donation to support research so that no child should ever have to contend with this level of emotions in a little body and a developing brain. Thank you.  (P.250)

Any assertion of authority is viewed by the child as the parent dominating him or her, a domination to be resisted at any cost. Something goes off in the child’s brain and a rage gathers. A simple “no” triggers a nuclear explosion. When the exasperated mother of a seven-year-old boy asked her son why he could never do anything she asked, he looked at her and said quite baldly, “Oh, I can’t do that, that would mean you are in control of my life. I rule the world; what I say goes.”

What would motivate this child to feel this way? This mother felt his statement came from a “great sense of grandiosity and perfectionism.” Maybe it comes from a sense of defectiveness, and when an adult tries to subordinate the child to his or her will, it elicits feelings that are so bad or uncomfortable that they are not to be tolerated. Perhaps, as we suggested in Chapter 7, the anxiety level of these children is so high that they have to dig in their heels to feel a sense of control. No one really knows, but the Parenting 101 adage that discipline comes from the root “disciple” will seem almost funny after attempting to deal with a bipolar child. They are to be the parents’ equals if not the parents’ superiors.

So, the parent must step out of time and place and become the parent this child needs, not the parent that society (and the parent’s ego) dictates. It requires an almost superhuman love, where the parent’s expectations are set aside and the needs of the child are met first. A father wouldn’t insist that a blind child play basketball because all the other sixth-grade kids are doing it; nor would he sign up his wheelchair-bound child for the football tryouts just because the other ninth-graders are doing it. Parents have to modify their ideas of parenting skills and be very, very brave. (P.253)

In order for a parent to begin to come to terms with oppositional and out-of-control behavior, he or she has to have an inkling of what is happening within the child and realize that what may work with a well child will rarely work with a bipolar child. Why? Well, to begin with, these children don’t start the day planning on screaming obscene phrases at parents or threatening them with forks and knives… Instead they get caught up in a world that seems to demand things from them that they are not equipped to deal with; shifts from their own agenda to their parents’ and teachers’ demands and the quick changes that take place during the school day. Often these children are unable to make these shifts or comply with these requests. And to make matters worse, often these children are very smart and sensitive to the fact that other people can “go with the flow,” so they feel doubly bad about themselves. (P.254)

 

Sooner or later it all comes to a head with the phenomenon known, and feared, by parents as raging. Raging that can go on for hours at a time. It is rarely seen by the teachers and professionals but is reserved for the safe domain of home and family – most especially for the mother.

What causes these seizure like rages, which seem to be most often triggered by the word “no”? The evidence points to neurochemical factors:  With the right mood stabilizer or the right combination of mood stabilizers and perhaps atypical antipsychotic medications, these outbursts are often eliminated or become less frequent and intense.

But until stabilization does happen, parents are going to have to deal with wild tantrums and tough times. And as most parents have found out, behavior management techniques do not work with these children:  No amount of star-or-sticker chats or time-outs, and no threats of grounding or unplugged TVs and Nintendo sets, is going to make a whit of difference. These children are not moved by threats, explanations, or even bribes for very long. As psychologist Ross Greene explains in his book The Explosive Child:

Consequences can be effective if a child is in a state of mind to appreciate their meaning, but they don’t work nearly as well if a child is not able to maintain such a state of mind. (P.255)