Wednesday, July 29, 2009

Hitting Home

In my journey to help my son heal, and to understand his behaviors, the effects on our family, and learn how to address them, I've read tons of books. My search for answers has been a long and expensive one. Amazon.com is bookmarked on my computer! I could probably earn a psychology degree by now, for all the information I have digested over these last few years, most from reading books and online articles.

Once in a lifetime though, a book may come along that will ring true and change your life. The Papalos' book, The Bipolar Child, was such a book for me. Every paragraph and nearly every chapter I read, from cover to cover, had me repeating to myself, "Oh my God, this is my child!" It was as if the door had finally opened and SOMEONE understood and acknowledged what we live with everyday. It has a name!

Childhood Bipolar Disorder.

With that revelation though, also came nearly paralyzing fear. This is not simple ADHD or anxiety or adjustment disorder as was previously diagnosed. We aren't going to Ritalin or therapize this away. This is a full blown psychiatric disorder, that can cause children, sadly, to take their own lives, and the younger age the symptoms manifests, usually the more severe a disease it is and will become.

We have finally found a psychiatrist who treats children with mood disorders and willing to, conservatively, try out mood stablizing medication. It's already been a long rough road searching for an answer. It may get even longer. And rougher.

While we wait, watch and wonder if our son's life and our family dynamic will stabilize, it's helpful to reaffirm some things that we already know, but sometimes forget as we are walking on eggshells and shielding our son (and ourselves) from the disapproval and ignorance of the world as best we can.

We might suffer alone, but we are not really alone. Here is an excerpt from a newsletter written in honor of mothers and fathers of bipolar children. For those of you who wonder what it must be like to parent a bipolar child, or parents of bipolar children who feel as if NO ONE understands, the Papalos have once again, hit every mark. This is our life. Is it yours?:

  • Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
  • Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
  • Accept that they need help from a professional, but feel a stranglehold of fear.
  • Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
  • Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
  • Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
  • Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
  • Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
  • Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
  • Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
  • Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
  • Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
  • Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
  • Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
  • Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.
  • Are set adrift in a house that has become a war zone.
  • Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
  • Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid.
  • Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
  • Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
  • Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
  • Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
  • Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
  • Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
  • Want the world to understand, but fear that the stigma will further isolate the child and their family.
  • Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
  • Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
  • See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
  • Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."


4 comments:

Essie the Accidental Mommy said...

How did it go with the meds?
I have the book and although not every page screamed out at me, many do. I felt the same as you, relief at the confirmation, terror for the future.
GOod luck!

Perspective RAD said...
This comment has been removed by the author.
marythemom said...

I try to look on the bright side.

Once you find the right medications (and adjust as your child grows) this is a treatable illness.

Although not so much with kids, bipolar disorder is a medically recognized disorder that most people have heard of and there are lots of choices in meds to treat it.

My kids have so many other issues that can't be treated with medication, half of which most professionals (especially the schools) have never heard of and don't know how to handle.

Mary in TX

http://marythemom-mayhem.blogspot.com
I'm an online mentor at: http://rad-online.org/

Mom to biokids Ponito(10) and his sister Bob(13)
Sibling pair adoptive placement from NE 11/06
Finally finalized on Kitty(14) on 3/08 - 2 weeks before her 13th birthday!
Finalized on her brother Bear(16) 7/08. He turned 15 the next day.

" Life isn't about how to survive the storm, but how to dance in the rain."

Ryansmom said...

The meds have caused MAJOR insomnia. Not something easily dealt with here, as lack of sleep adds all new kinds of negative behavior issues. :-( The 25mg dose is supposed to be increased to 50 mg tomorrow, so I'm even more concerned. We've had two rages in the two weeks he's been on meds. So, not much difference in behaviors, but much calmer when he's calm. No "spinning" is happening, but some signs of depression and some "flatness" of emotion. We're still not there yet.

I have a call into the pdoc about my concerns, so we'll see what to do next.

Yes Mary, the bipolar is co-morbid with so many other things, that I'm afraid we'll never get it sorted out. All we can do is treat it all as best we can, and leave no stone unturned. This new school year, and brand new IEP will be...um... interesting.

I am concerned about school starting in a few weeks. I can already see the anxiety building up some. That's not a good thing.

Keeping my fingers crossed that the transition goes as well as it can.