Thursday, December 30, 2010
An Avoidant New Year
While it's traditional to begin the New Year with resolve and anticipation of a fresh start, I've determined to stick my head in the sand. After a completely overwhelming past four months, I've committed to giving myself a break.
I am already weary. Ten years of parenting a boy with a severe bleeding disorder, five of which have included post-traumatic stress disorder and related anxiety are enough to do me in alone. But I also have wrestled with raising a very energetic little girl with a smorgasbord of what I commonly call "alphabet soup" for the past eight years as well.
The past four months have been a time where we have really been put to the test. After sending our son to hemophilia camp with his older sister this summer, we thought he had finally conquered some of his giants. Not only was he gaining some self-assurance with being away from home for a week, but he also gained calm and confidence learning to infuse in every aspect except for putting the needle in his own vein. I had the delight of seeing my old boy back again -- the one who was joyful and not owned by traumatized emotions. However, less than a month later, as sometimes will happen, we blew a vein while infusing. Unfortunately, it was all downhill from there. Since September, we've been dealing with a renewed round of psychotherapy and psychiatrist appointments with new medications. Despite sedation, infusions have become so terrible that we have ended up in the local emergency room, unable to subdue him for the infusion between the two of us. We're making the slow climb out, but we measure progress in centimeters rather than in strides.
Meanwhile, an alternative therapy in August for our multi-allergic youngest daughter resulted in her behaviors becoming more pronounced. We made the attempt with this therapy because in addition to being allergic to every antibiotic class but one, she has also reacted to the three ADHD medications we've attempted to use. Prior to the August therapy, I had seen many signs of sensory issues in my youngest, but figuring it was the least of my problems, I made some minor adjustments at home and ignored the rest. (Are you seeing a pattern of avoidance here?)
However, once school began in September, it became obvious that things were taking a sharp turn for the worst. Ostracized and teased by her classmates, our daughter's quality of life was quickly deteriorating. She became the one who was annoying to other children and wasn't invited to parties. Her sensitivities increased as I became unable to even touch a hairbrush to her head. I knew from my work with our families that I needed to get moving on diagnosis and treatment for our girl. In other words, the sensory issues got shuffled to the top of the pile.
With the help of an excellent school district and terrific connections around the country, our daughter had multiple, multiple tests with the speech therapist, school psychologist and occupational therapist. Additionally, she went through testing with a neuropsychologist who coordinated everything with the school. The final conclusion? We discovered that our child's ADHD is vastly complicated by her inability to take any medications for her high level of impulsivity. While she can focus and attend to things, her exuberance overrides her ability to reason. Furthermore, the occupational therapist resoundingly confirmed her diagnosis of sensory processing disorder. You know it's not good news when a specialist says, "Most children don't fall so conclusively in the 'definitely unlike peers' area, but your daughter did in every area but one".
So I have some work to do. I have wonderful books to read and websites to explore. There will be more pouring of myself into these children and their emergent needs. New habits will have to be formed on my part. And creative problem-solving will have to become my "new normal".
But not now. Not when it was everything just to get this family to the holidays. Every inch of me was required to keep the kids relatively calm and happy as they encountered all that rocks their world in December. It was all I could do to not start crying every time my son wept over his life with hemophilia. I had to muster all that was positive to usher my own worn-down children into the sunnier side of life that they were blessed with during the Christmas season.
Don't ask me to be a grown-up now! Stop pushing me to become the resident expert on yet another diagnosis. Let me read novels rather than all of the information that will equip me to take my kids through this next phase. I'm plugging my ears to what I hear going on! I want a blissful, ignorant bubble bath where reality doesn't bite so hard!
I'd better get this avoidance over with quickly. The IEP meeting to put interventions in place is in five days!