Back to School--With Narcolepsy
With every new school year, I brace myself for the challenges of parenting my child with Narcolepsy (CWN) over again. Turning up to fourth grade with an incurable sleep disorder, a portable bed and an antisocial schedule is not exactly regular. And yet last year was great. Mathilda hung in there academically, had a few bumps socially, but all in all Narcolepsy seemed to have little impact on her school life. At least, for now.
OK, so she misses a lesson each day (we make it up at home), and PE floors her. That said, I'm somewhat amazed at what she achieves and how effortlessly the school has accommodated her needs.
Back in July, I found myself in the Headmasters' office with two new fourth grade teachers, the wonderful office manager, and Mathilda's old teacher from last year providing the voice of experience.
They asked me about the symptoms of Narcolepsy and whether or not she’ll ever grow out of it. We spoke about the importance of her napping during her strong subjects (Reading and Spelling) and definitely not sleeping if possible during her weaker ones (Math and Latin). We also talked about how the nap was unavoidable, and that she wouldn't get past lunch without it. Then we thrashed out how to handle upcoming field trips, ones which involved lots of walking (always a challenge) and long car rides (where she drops off immediately). I found myself explaining the rest: that her time outside of school is regimented with further naps and devoid of extra-curricular activities, her nights complex, and her medications vital. I wanted them to have some notion that having Narcolepsy is much more than just dropping off in class.
Since the school has moved to a new site this summer, offering much bigger classrooms, we were able to figure out where the best place would be for Mathilda to roll out her little bed each morning. And knowing how important it is to her to keep things discreet (she likes to slink off as if nobody notices, then pop back into her chair on waking), we agreed that her new desk should be in the back row. She'll sleep right behind it.
What struck me in that hour with the team of dedicated staff, was how these accommodations could make a huge difference. Like offsetting feelings of shame and isolation, giving her a chance at sustaining meaningful relationships, and significant opportunities for learning. In short, preparing her for a future with a serious sleep disorder. After all, it's not going to vanish anytime soon. I also wondered if ironing out the details would mean minimal disruption for the teachers teaching, and almost no distraction to the students. That’s important too.
Last academic year, parents offered comments during pick up about how they'd never know anything was wrong--certainly not a serious, neurological disorder. Their kids reported at home over supper how Mathilda takes a nap at the back of the class every morning. Some are jealous, wishing they could zone out during Wordly Wise too, especially now they all getting older and the work is harder. Yet because they're all a team of sorts, none of them thought it so 'out there' that they couldn't rally around her at recess--a sacrosanct part of the day that the Professor and I specifically asked that Mathilda never to miss.
From time to time, her buddies have asked me “Why is Mathilda so sleepy?” and it has seemed natural to just respond with the simple truth:
Mathilda has something called Narcolepsy which means the part of her brain that controls sleeping and wakefulness is broken.
And judging by the shrug of their shoulders and "OK, cool" that's about all they need at this point. I love that about young children--they're inherently accepting.
Recently, a good friend leaned over to me as we watched the girls singing one morning and whispered those magic words in my ear:
"You'd never know, Claire."
Honestly, that is one of the nicest things anyone could say to me. I'm genuinely elated when I hear stuff like that. It's as though we've got away with something and I'm sitting there with my fingers tightly crossed behind my back. I realize that the comment is a reflection on the fact that Narcolepsy is unseen. And I probably should take the opportunity to educate that person, explaining about Cataplexy, Xyrem, and dysfunctional Non-REM. But for a few minutes I ease into their comments and sigh deeply, savoring the suggestion that Mathilda is a star--meds or no meds. Singing in tune or otherwise.
And I take those comments all the way home on the freeway and into the night, then back to school the next morning as Mathilda dons her fourth grade uniform whilst half asleep. I'm not quite ready to uncross my fingers but I have every hope this year will be as good as the last. And I wouldn't mind hearing those words again ...
"You'd never know Claire. You'd never know."