Decisions

It’s a sunny afternoon in the middle of May, and I’m in a conference room at Micah’s high school. There are about eight of us seated around a rectangular table–a couple teachers, a counselor, a developmental disabilities advocate, an assistant principal, and one traveling school nurse. Micah sits at the head of the table. He is clothed in black, wearing a new t-shirt from a zoo we visited last weekend and sweatpants to match. Black clothes can sometimes make one appear ominous, but Micah, all smiles and chatter, is anything but threatening. He looks excited to attend his first IEP meeting…or perhaps it’s because he gets to miss his last class period.

While we wait for a couple other team members to arrive, I ask the brown-haired thirty-something man across from me if he’s Micah’s PE teacher.

“Yeah, Mom,” Micah says just as the man opens his mouth to respond. “He is. Don’t you think he looks like Martin Starr from Spiderman?”

Note: Micah often tells people they look like some movie character, actor, or famous singer. He’s told me I look like Anna from the movie, Frozen. He claims Aunt Heidi looks like Anna’s sister, Elsa. Much to Aunt Terri’s delight, she’s the twin of the singer, Katy Perry. He recently informed a golf buddy of Todd’s that he resembled actor Russell Crowe. Usually, his comparisons are received as compliments. I am relieved he’s never said to anyone, “Hey, you look like Ogre from Shrek or the wicked witch from The Wizard of Oz.”

The room suddenly ignites with smiles and laughter. “Yes, I think I can see the resemblance, Micah,” I say, watching my son’s delight at the sudden happy warmth in the room. Perhaps all future IEP meetings will begin with a Micah-style icebreaker like this. Indeed, this could be very useful.

The laughter dies down, and Micah, glancing down at his small black CGM (continuous glucose monitor) receiver, says, “Mom, I’m 82 and angled down.” His blood sugar is about to go below his range.

“Okay. You know what to do. Grab a juice. Where’s your diabetes supply bag?”

“Uh-oh. I think I left it in the room.”

“Oh Micah—remember, it needs to come with you wherever you go. Go ahead and get it.”

“I know, Mom. I just forgot.”

While he’s gone, I ask his case manager (special education teacher) if we could discuss Micah’s diabetes care. “I’m wondering if we could reduce nurse visits next year. They wouldn’t have to come mornings or afternoons, just during lunch. Micah is getting very good at knowing what his numbers mean and how to deal with them. I think giving him some independence with his care is important as he gets older.”

Heads are nodding, and his case manager agrees, which is not surprising to me. I know she feels these visits are too much of an interruption in his day. There is some discussion on how she and the paras in her room can help. I suggest that, to begin with, Micah could call me during these times, tapering off once he gets the routine down. The only person that conveys any uncertainty is the traveling nurse. “But wouldn’t he still go to the school nurse’s office to get checked during the times we normally would come?” she asks with brows furrowed.

Later, I wonder about her hesitation. She has known Micah since he was three years old and attending special needs preschool. She has traveled to his school to check on him more than any other nurse. I understand there might be an attachment, although she might also think I’m being premature in allowing him this level of independence. But what is the worst that could happen? His CGM alarm will go off, and he’ll drink a juice. This has already happened at school a dozen times, and he always responds.

Not even two years ago, when asked if I thought Micah would ever be able to manage his diabetes by himself, I would answer no. But, during the last year, he has proven to me that is understands the numbers and knows what to do. I still get up to check him during the night, even though he usually catches his lows before I do, correcting them with a fast-acting carb like juice (there are always two or three juice boxes by his bedside). When we’re at home together, he will often come to me if he’s too high or about to go low. It doesn’t mean he doesn’t still need to be supervised—especially since he becomes very anxious when his numbers are not as they should be. Is he ready to manage his insulin pump or give himself an injection when needed? Probably not. But this part—reading his numbers, getting a juice when needed or telling someone when he’s too high—this is something he can do on his own.

When Micah was diagnosed, we received a thick book on diabetes management from his pediatrician. I’ve consulted it many times when I’m uncertain or have forgotten how to handle a situation. However, nowhere in this manual does it give guidance on when to allow your child, who also happens to have special needs, some autonomy in managing this medical condition.

There is a saying that if you’ve met one child with autism, you’ve met one child with autism. What’s right for one might not be right for another. All I can do is go with my instincts, weigh input from people I trust, and pray to God for wisdom and protection. No, I don’t have a written manual, but in this…I have much peace.