When Type 1 Diabetes is Too Much for a Child to Bear: Part 2

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Editor’s note:  In December 2014, ASweetLife published this essay by a parent whose child with Type 1 diabetes and celiac disease had been admitted to a pediatric psychiatric hospital. He had become suicidal.  The following essay is a continuation of his story.

After just under a week in a psychiatric hospital last fall, Finn* was discharged. The hospitalization had begun after I got a call from his school one chilly morning.

Finn had told the school psychologist he was planning to hurt himself. This, just three hours after he’d cheerfully, chattily trotted off to school with a pumpkin in his arms. Of course it wasn’t that simple. He’d been struggling with anxiety and depression since his diabetes diagnosis in 2011 and subsequent diagnosis with celiac disease, but he had (and continues to have) a dream team of pediatric mental health providers. He’d actually been to see his psychologist the day before. Everything was just so normal, and then—out of the blue—not.

I was bewildered when the school psychologist told me she was on hold with the children’s psychiatric hospital’s emergency department. Was she overreacting? Having a slow semester, and looking for excitement? For the next few hours, phone calls and meetings came at us in increasingly rapid succession: the hospital needs your insurance card number—Finn’s psychologist saying yes, go to the hospital—cancel lunch date—call husband at work, I think you need to come right away—a clipboard with many blank pages to fill—Dexcom LOW alert; can you eat these Smarties?—someone to tell Finn’s brother where we are—a social worker’s assessment: suicidal ideation—we need to page our endocrinologist, the doctor here doesn’t know what Lantus is—a different nurse with a health history form and a tongue ring… It was like somersaulting down a hill after failing to gauge its pitch. We tumbled along until finally landing in an antechamber of the psych hospital’s inpatient unit where Finn was asked to sign a document, voluntarily committing himself. And then silence. Our child is suicidal.

In the hospital, each day is planned out in half-hour blocks. Take a shower/get dressed time, breakfast time, quiet reading time, art therapy, clean up time, lunch time, group therapy, movie time…each day is plotted out on a table, like the schedule of activities they slide under your door while you sleep on a cruise ship. But the hospital’s activities are not optional. Doing them, doing them all, and doing them all with sincerity, is how a patient earns privileges (a turn with the shoebox of Lego, or a ticket to the unit’s movie night) and progresses toward being discharged.

Finn’s dad and I were not surprised that he was an A+ patient. He was motivated to get out as quickly as he could. But we were surprised that he seemed to relish some aspects of being hospitalized. For example, he loved the occupational therapy room, which had what he described as a hammock chair that zippered closed, creating a plush cocoon. We thought he would be traumatized by living among the other patients: several had to be physically restrained, one wailed continuously, one dressed exclusively in a Transformers costume and screamed if he was referred to as anything other than Hot Rod. But Finn was not traumatized. Instead, he enjoyed being in group therapy, and bowling with a girl who had expertise in setting up the wobbly, hollow plastic bowling pins. By the end of his stay, there was no big revelation. But it was obvious he was more worn down by living with chronic illness than we’d known, and was desperate for a break.

The hospital provided Finn with that break, not from chronic illness, but from being different. Diabetes camp is often celebrated for offering kids exactly this—much needed relief from being different. Although in the hospital, he was the lone patient with Type 1 diabetes, he was by far the most regular kid on the unit. So even though he had to get an injection before each meal, he was surrounded by kids who had much more cumbersome treatments. And, who knows? Perhaps he served the same role for someone else, who might have been thinking, “I might be restrained by a man wearing forearm protectors because I bit him this morning, but at least I can eat lunch without getting a shot.”

On the day we picked Finn up to come home, he was wearing his Marjorie the Dog T-shirt, ragged Friends for Life bracelet, and shoes held closed with Duck tape. His hair had the style that can only be achieved by going to bed with wet hair and a rubber pillow. He was a living caricature of a psychiatric patient with Type 1 diabetes.

We were eager to reintegrate him to life on the outside. But first: new shoes. Upon admission, the hospital had removed the laces from Finn’s sneakers, and a nurse had taped them closed. Upon discharge, the laces were returned to us in a plastic bag. Once home, I prepared to re-lace the shoes, but when I ripped the Duck tape off, the tongues were marked with gluey black residue. I put the sneakers into the trash. My husband thought perhaps we should save them in case Finn had to be readmitted to the hospital while his feet were still a size six. I rearranged the trash so a drippy rotisserie chicken carcass was on top. I tucked the bag of shoelaces under the wet chicken too. I didn’t want any souvenirs.

As with a hospital discharge after Finn’s Type 1 diagnosis, the psychiatric hospital experience came with its own set of foreign, yet urgent, instructions. In both cases, our hospitals presented a summary of these on a laminated 8 ½ x 11” card, along with the suggestion that we apply this to our fridge with a magnet. On the psychiatric hospital’s instruction card, in place of the familiar hypoglycemic (shivering, sweating) stick man is that stick man’s brother, slumped over under a rain cloud. Instead of fill-in-the-blanks for blood glucose numbers and grams of carboyhdrates to consume, or units of insulin to take, there are fill-in-the-blanks for “Things I can do when I want to hurt myself.” Pat my dog. Take a shower. Hug someone. Listen to music.

Could it really be that simple? The psychiatric hospital is behind us, and I can’t stop comparing the post-crisis phase we’re currently in to the post-crisis phase we found ourselves in three years ago, with a diabetic child we suddenly had to learn to keep alive. The feeling of holy shit; we don’t know how to do this is very familiar. And this time around, the gist is familiar too: make it up as you go along, know who to call for help, and, as time passes, acclimate to feeling afraid until the fear feels normal. A pocket-sized fear, portable and easy to conceal.

Our family’s life has returned to normal, or at the very least, normal-ish. Finn has been back home for four months now: attending school, going sledding, and playing video games with his friends. He is not embarrassed by the hospitalization and speaks openly about it to anyone that asks, probably more openly than advised. Before he returned to school, his psychologist helped him plan how to handle the inevitable questions: Some kids won’t know quite what a psychiatric hospital is, and unfortunately they might tease you. You can just say, “I was in the hospital, and I’m better now.” My heart lurched when Finn told me one classmate had heard where he’d been and asked, “So, are you crazy?” But Finn just thought that classmate was confused. I told him, no, not crazy, just really depressed. He didn’t feel hurt, embarrassed, or insulted, and didn’t understand why I thought he might.

Hospitalization meant missing a lot of school. During that time, Finn fell behind. He came back in the middle of a unit on volcanoes, and knew nothing about volcanoes. He was lost. His teachers were tentative when he first returned. We all thought it was stressful enough for him just to be in school, and that pressure to catch up would make things worse. Only now, after acclimating for an entire quarter, is he once again being held accountable for knowing the three branches of government or their, they’re, and there, or even for remembering to bring a pencil to class.

Today, Finn says he is fine. Happy, even. But there are glum times. They are short-lived, the kind of thing I would assume, in anyone else, is a passing mood. And these moods are often concurrent with wacky blood glucose. Does that make a bleak feeling less real? If I just want to sleep forever disappears with normoglycemia, is it less worrisome? Finn seems to think so. I just felt that way because I was low, he’ll say or I only said that because I felt mad about something stupid because I was high.

During the first days after hospital discharge, we were on tenterhooks—continuously watching, and sure to always know where Finn was in the house and how he was feeling. When he’d go upstairs to play with Lego, one of us would go upstairs too, under the guise of needing to clean the bathroom or fold laundry. When he made plans with friends, we’d finagle things so the friend would come to our house. We didn’t want to let Finn out of our sight. After a few weeks, he requested that we stop treating him like he is sick and to recognize that he is okay now. His psychologist agreed with him, and suggested we trust him to tell us if he is in danger. But still, when he is sitting on a sofa, reading a book or watching Tobuscus on his iPad, I often sit beside him and press my cheek to his cheek, as if suicidality might express itself as a fever. And he’ll move his face away to look me in the eye and smile: I’m fine.

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Katy Killilea

Thanks to Wendy from Candy Hearts, I saw this relevant article today. It’s about how much more common it is for kids with T1d to have psychiatric disorders. (Still rare for anyone to have a psychiatric disorder, but less rare in kids with T1d.)

http://mobile.reuters.com/article/idUSKBN0LM1WZ20150218?irpc=932

Ashley
Ashley

As a Type 1 pump whose been on on the adolscent ward several times I can tell you that its nothing you ever forget. Its difficult when your among a few of your peers and everyone knows everyone about everything. You keenly stick out more when you don’t fit into the mold. One might think societial norms don’t exist in a institution but I can assure you that they do. Sure there is the confidentially that patients, staff, and visitors are suppose to follow without disregard but let me tell you other patients are the worst. Being there does help… Read more »

Laura Houston
Laura Houston

Thank you for the follow up and for sharing your story. You and Finn have been on my mind and in my heart since I read the 1st essay.

Mike Dan

This is such a great story. I agree with JB that it’s great that there is so much help out there for people with Diabetes now as compared to decades ago. More importantly though, I am looking forward to a diabetes free world…won’t that be great?

JB
JB

It’s great to live in a day when there is so much help out there, as a 12 year old in 1970 living in rural America, I had to self-teach everything about Diabetes1 to myself..I made it, but again am thankful that those in this day and age have more support behind them.

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