Health

Recovery, Organization, and Feeling Trapped

By / October 15, 2011

Illness has receded for me. Yesterday was made of fatigue with brief reprieves of energy. Today has mostly been normal with occasional bouts of fatigue. I wish I could report the same of Howard. He continues to suffer. I made the dessert quiche and it was passable, an experiment worth repeating with alterations. The spinach quiche was better, but is crying out for the inclusion of artichokes.

The chaos in the boys’ room is trending toward tamed. Usually when the mess reaches that level I can solve much of the problem by simply removing the garbage. Somehow my boys have not grasped that unnecessary packaging should be placed in the garbage can rather than shoved onto the nearest flat surface. I’m hopeful that this round of organization will last longer since I’m requiring the boys to do their own sorting. The complaints have been many and the progress slow. Bit by bit we begin to see what sorts of containers would be helpful in taming the mess. For instance, Patch has a tendency to array small toys on a large shelf. Inevitably things get stacked on the small toys and it all turns into a jumble. We need to acquire a wall-mounted set of display shelves intended for small cool things. I’ve added this to the thrift store acquisition list.

The day felt endlessly long when we were in the middle, the house was full of kids, the doorbell was ringing every quarter hour, and the phone rang almost as often. I wanted to flee the house, go find a quiet space elsewhere. Unfortunately I was tethered by the group of teenage girls using my sewing machine and likely in need of technical help. Also abandoning sick Howard to manage the chaos seemed cruel. So I stayed, and felt trapped, tangled in my web of connections. Then evening came and all the kids migrated outdoors. The blue light of evening began to fill the sky. I sat on my porch watching kids ride in smooth circles around the cul de sac. Sometimes I tipped my head back and watched the slow progress of wispy clouds against the bright blue sky. The evening felt as open and free as the afternoon felt trapped. And I begin to feel that perhaps the day has been a good one.

Still recovering

By / March 2, 2011

We’ve achieved a semblance of normality. It is a slow-paced normality with many naps, but all the kids are back at school and no one has a fever anymore. Howard and I have been tag-teaming for the past five days. We take turns sending each other back to bed. We also pared down to the absolute essentials. Yesterday I had three necessary tasks. I had to finish up the last tax paperwork. I had to attend a registration meeting for my high schooler. I had to make sure that the family birthday celebrations were not delayed or abridged by sickness. I accomplished those things and nothing else. There is an accumulation of tasks which is nibbling at the edges of my consciousness. At some point I’m going to have to find high gear and scramble to catch up. That won’t be today.

I have my list of essential things for today, tomorrow, Friday, and Saturday. These are all parenting and family things which are time sensitive and which will live in memory for decades if I mess them up. I am proceeding cautiously because this particular sickness fills my brain with dumb at unexpected moments. On the list of things I really ought to get done are shipping, house cleaning, and email. A little at a time is all I can do.

Diagnosis

By / March 19, 2014 / 2 Comments

I wrote this post one week ago today. I was not ready to release it in the wilds of the internet quite yet. I needed time to think and to discuss with Gleek. She thinks I should post it so that it can help other parents who are going through similar things. So here it is:

I don’t want to be here. The knowledge washed across me like a wave when the doctor stepped out for a moment to request a copy of a document. The rational portions of my brain were in charge of this visit. I made the appointment. I filled out the paperwork. I pulled Gleek out of school. Then I listened to the doctor and spoke to the doctor. I asked all the smart questions. I weighed all the variables. I knew this course that I was on was the right one. I felt that rightness deep inside. The calmness and sureness was there, like an underground river deep in my soul. It was the river upon which my boat of logic floated. But I did not want the trip. Not at all.

The doctor and I are ten minutes into our conversation before I ask the question. I need to hear the words.
“So she definitely has ADHD?”
He answers yes and shows me the diagnostic forms which indicate it. Then he talks about tendencies, and possibilities, and why having ADHD can sometimes be a long term life advantage. He hands me piles of copied articles, pamphlets, and resources. I put them in my bag. Most of what he tells me I already know. The papers he has given me will be review, not new information. I’ve known the shape of Gleek’s challenges for a long time. This office visit contains no surprises. I knew what the diagnosis would be. I made this diagnosis for her myself years ago. But somehow, hearing it from a man who specializes in pediatric ADHD and mood disorders opens a small well of grief.
I knew what the answer would be when I asked the question, but I wanted to be wrong. I wanted to be told that she was fine.

I know that both the grief and the desire to be wrong are illogical, but they are there. I must acknowledge and process this grief so that it will not impact any decisions I must make. Why am I sad? The diagnosis changes nothing. Gleek is the same marvelous, strong, challenging person she was before the doctor said the words out loud. I am sad anyway; grieving because her challenges have been quantified; grieving because I am no longer able to pull a cloak of “maybe I’m worried about nothing” across the hard truths. She struggles, not all the time, not in every situation, but often enough that it hurts. The well of sadness has been filled up by all those thousands of small hurts seeping into it.

A diagnosis is a threshold. Sometimes what is on the other side is very much like what came before, other times the act of crossing over changes everything. Until one crosses, it is impossible to be certain which will be the result. Choosing to cross is difficult when things on this side are reasonably good. I have puttered around a long time making do with what I had. Then the calm river came to carry me over. I’ve done diagnosis before. I’ve had it be world changing. I took my non-verbal two and a half year old for developmental testing and embarked upon a decade of speech therapy, developmental research, and meetings with teachers. That same child in third grade was diagnosed with ADD/anxiety and I was transformed from a parent who would not medicate a child into one who does. I went to the doctor for an odd lump on my chin and ended up with multiple surgeries, radiation therapy, and daily thyroid medication. I know deep in my heart that diagnoses change things. All of the changes that have come to me via diagnosis have been ultimately good, but choosing change is still hard, even when I’m pretty sure what shape the change will take.

The doctor threw a ball to Gleek as he asked her questions. He put her through a variety of other little tests with a deftness which speaks long practice in working with high energy, high creativity children. She smiled and engaged with him happily, chattering about whatever lightning quick thought passed through her mind. She charmed both the doctor and the nurses. I was amused that the nurse commented on how active she is, apparently even in an office full of highly active children, she still stands out. I watched Gleek as she waltzed her way through the visit. I could see, though the staff could not, that she was nervous. She hoarded a little pile of candies, pictures, and prizes. The accumulation of small things soothes her. My heart was glad that everyone accepted her barefootedness and desire to touch everything as normal. No one scowled or scolded, even when she climbed atop the counter to perch.

We left the office with seven tootsie rolls, a sucker, a book mark, a pencil, a coloring page, a prescription, and my little well of sadness firmly capped for examination later. I did not take her back to school. Instead we went out for gelato. I just wanted to be with her exactly as she is. I don’t want her to change. She doesn’t want to change. Yet change is inevitable and much of it will be good.

The decision to medicate a child should never be undertaken lightly. I don’t take it lightly, not even after making this decision once before. Not even after seeing how medication removed Link’s chains and let him fly. They are so different these kids of mine and I can not apply blanket solutions. For all of Gleek’s years thus far, I felt strongly that medication was the wrong choice for her. Last Spring she shifted, I shifted, and I began to know that now is the time to see what medication will do. We need to know so we can make long-term decisions. I know the experiment will not do damage. It will not hurt her. Medication gave Link wings. Gleek already has wings, this time I’m hoping for a rudder. There is hope along with the trepidation.

The last step before filling the prescription was for Howard and I to sit down with Gleek and ask how she felt about medicine.
“I want to try.” she said. This is important. In order for medication to work, it must be her tool, not something I impose upon her. In the end my sadness and worries are irrelevant. I must not impose them upon Gleek nor burden her with them. Logic, her decision, and the calm river inside me say that tomorrow morning she will take medicine. So she will and I will observe. Then we will have more information than we have today, just as the diagnosis gave me more information than I had yesterday. This is a good thing.

Purchasing the medication was complicated by a trip to the Emergency Room for Patch, whose arm turned out not to be broken. Howard managed that little adventure, while I fetched the medication. Then I came home and lay on my bed in the solitude of my room. I had a small space to look deep into that well of sadness, to let some of it leak out my eyes. No grand explanations or reasons emerged. In the end I don’t suppose I need to explain it or rationalize it. As I move onward, as I heal, as Gleek grows, as I write, the well will empty out. It is much more empty now than it was this morning. Water drawn from a well of sadness can soothe other thirsty ground if I’m willing to leave the well open rather than capping and hiding it.

It has been a long day, a hard day, but not necessarily a bad one.

Experimenting with sugar and alternative medicine

By / August 21, 2010

In Terry Pratchett’s books the witch Granny Weatherwax uses Headology to help people more than she uses magic. Headology uses both psychology and trickery to adjust people’s behaviors. In the case of a man with chest pains, Granny told him that he’d been bewitched by nymphs who lived in a waterfall. All he had to do was hike to that waterfall, bow three times, sing a song, and leave a small offering once per day and the nymphs would leave him alone. Or something like that. My memory of the scene in the book is a little fuzzy, and I could not find the specific reference. The point is that Granny knew that the only beneficial thing in her instructions was the hike. The man was too sedentary, so she told him a story that would make him be more active.

I took Gleek to a practitioner of alternative medicine. A friend, whom I respect, says that many of her son’s behavioral issues have been greatly alleviated by this practitioner. Since I plan to do some aggressive diagnostics and behavior modification for Gleek this Fall, I decided that alternative medicine would be a low impact and low cost place to start. We went. We followed the instructions for 24 hours until the instructions ran out. My after-the-fact conclusion is that bodies are complex and there are things I don’t understand. I am not ready to dismiss the idea that alternative phenomena can significantly alter someone’s well being. Mind/body connections are very powerful. However I’ve also come out of the experience feeling like I did a lot of dancing around and singing when the only thing that mattered was the walk.

The specific treatment applied was intended to reduce Gleek’s sensitivity to sugar.
In the category of dancing around:
Taping a small vial of sugar-infused water to Gleek’s arm for 24 hours, so that her body could balance to the sugars. I’m particularly skeptical since the vial was created by putting a blank vial into the same machine as another vial for a few seconds. Also when I accidentally dropped and broke the vial at the end, it was filled with something that smelled like rubbing alcohol.

In the category of hiking:
The strict list of things she was not to eat for 24 hours. She was totally off sugar during that time, which allowed me to observe the strength of her sugar cravings and to observe behavior changes. She got cranky, then tired, then sick. The sick shortly proved itself to be stomach flu that she caught from her brother. Having sickness strike mid-experiment mucks up the results quite a lot. However I have definitely proven to myself that more experimentation with her sugar intake is called for. She became jittery and wiggly within two minutes of eating sugary things again.

Having a vial taped to her arm was a very effective physical reminder to both Gleek and I that we were to be careful about what she ate.

In the category of Might be Dancing, Might be Hiking:
The diagnostic method of putting a vial into Gleek’s hand and then pressing down on her arm to see if she could hold strong. I’ve seen this effect many times before. I’ve had it done to me. But I don’t know that I buy the explanations about why it happens. I’m not sure why glass vials containing supposedly different liquids would cause the body to react differently. I’d think the body would react to the glass, if anything. But sometimes Gleek’s arm was strong and sometimes it was not. The practitioner identified her as sensitive to exactly the things which I would have expected. However I also know that magicians and con men can be very good about extracting information and telling people what they want to hear. It could have been a trick.

Making Gleek lay down every two hours so that I could apply a small massager to pressure points in her arms and feet. I don’t know whether the clockwise motion really did help balance her energies, or help her body accept the sugar. I am certain that laying down for a meditative few minutes every couple hours was a good thing for her. Also the vibrating massager was soothing on her skin. She liked that part.

The most important piece of the experiment is that by the end of it Gleek was bemoaning the fact that we had tried it. She was ready to blame her stomach flu on the experiment. I had to explain in detail why that was unlikely. She focused her frustration on the vial, and I would have to talk hard and fast to get her to agree to do it again. I don’t want to do that. Instead we’ll take the useful information and build new experiments to see if we can help her be a calmer, happier person. These new experiments will have less dancing around and more scientific method, because that is much more comfortable for us.