Optimal Learning and the Child with Narcolepsy
School is almost out and the older children will begin their summer of long mornings, relaxed afternoons and evening pool parties. For our youngest, Mathilda, who has Narcolepsy, the summer is also one where she has control of her schedule--one that allows her to dictate when to wake up, when to nap and when she has energy for the task before her. The school year can be brutal on the child with narcolepsy (CWN) largely because it demands they follow a routine that is contrary to what their young bodies are telling them they need. Like sleep. And leaving the house at 7.20am when they are nauseous and their body is aching because it feels as though they haven't slept for 72 hours.
It can also be challenging if the classroom environment does not play to their advantage. For CWN, the battle to remain alert and concentrate on any given lesson is akin to lifting a truck. It's something they constantly fight whilst trying to absorb the facts, fill in worksheets and memorize their multiplication tables. P.E. is another thing altogether.
When Mathilda was in Kindergarten not long after arriving here and starting treatment, the school day (and the hours either side) were close to miserable. She threw up on the way there and ignored her lunch, both side effects of Xyrem. She slept through the morning lessons in the nurses' office (often unattended and frightened) and woke only in the afternoons for science and singing. By pick up, she was asleep again, a reality that left me choking back tears when the class lined up for dismissal. I would scan the line of five year olds, only to realize Mathilda wasn't there standing with her classmates. She was alone again, asleep this time on the colorful squares of the reading mat, and I was left wondering how she was ever going to get an education. Some days I was so upset over how much Narcolepsy stole form her, that I didn't care how many hours of learning she had missed that day. I just wanted her to WAKE UP and not feel horrible. After 18 months of school, half way through first grade, her weight plummeted, she was still crying on the ride in and sleeping on the way home and because she was struggling socially, her play dates all but dried up.
Academic success became such a low priority, that the Professor and I decided pull her out of school just to feed her (brief episode of home-schooling) and re-think her options. My mum flew over from the UK, to help tempt her with slices of apple every half an hour, stretching her stomach so as to offset the nausea that threatened the delicate titration of Xyrem at night. Eight weeks later and Mathildas' weight was up and she was ready for school again, one that would work with her strengths and weaknesses, her peculiar schedule and one that would be sympathitic to her needs. This I understood to be key in Mathilda having a shot at education, a chance to learn at the same rate as her peers, and in time, afford her realistic opportunities in adulthood.
Moving through the grades at St. Monica Academy and finely tuning her drug regime, Mathilda, over the past two years has transitioned from merely getting through a school day, (physically absent for 40% of it), to flourishing (present for 80% of it.) This past year in third grade she has held her own in the spelling bee, caught up in maths and excelled in reading.
How does a child with full blown Narcolepsy and Cataplexy thrive in the classroom?
Much of Mathilda's academic progress, achieving what is expected of her at grade level has to do with the fantastic medical care from her doctor at Stanford, Professor Mignot. Some weeks we have relied heavily on advice form Mali, his PA and right hand, a woman who understands Narcolepsy not least because she too has it. Some of Mathildas' recent progress has to do with getting that little bit older, easing into living here and tolerating her medications. And the rest of it I'm sure is related to her her classroom environment.
Her teacher Miss Naaden met with me before school started in September last year and listened. She listened to my explanation of Narcolepsy and specifically Mathildas' journey, read all the online links I sent her and above all, tailored the timetable to play to Mathilda's strengths (Language arts) and weaknesses (Math) without sacrificing the curriculum or needs of any of the other students.
Apart from providing a sleeping area at the back of the classroom, Miss Naaden appreciates the importance of her napping schedule, recognizing when she is about to "shut down" and placing in her homework file, the lesson she has just missed. We pick up on Wordly-Wise later at home. More importantly, she gives Mathilda responsibilities surrounding the nap, impressing upon her that she needs to come back into the lesson, and re-engage without fussing. Something we have not achieved after the sleep in the car at 3pm.
Another crucial element of the teacher-student dynamic for the CWN is more complex. Many Narcoleptics struggle with intense feelings of shame--a potentially destructive emotion that is exists somewhere between mild embarrassment and humiliation. The shame that often accompanies Narcolepsy can be traced to a loss of power which is easily understood in the child that frequently needs to sleep at inappropriate times and in inappropriate places. Feelings of inadequacy, inferiority and a loss of power often leads to low self esteem and the desire to withdraw. Furthermore it can become destructive and result in depression, anxiety and avoidance of social interaction. Unsurprisingly all this impacts on their social development resulting in behavoural challenges and a need to control relationships.
So when Miss Naadan charges Mathilda with certain responsibilities in the classroom related to her condition, she not only maintains the smooth running of the lesson, but empowers her to have a degree of control. Mathilda gets to "own" her Narcolepsy and is empowered by being free to acknowledge her needs because those around her respect and recognize how Narcolepsy affects her. Getting out the mat, rolling it back up and helping other children with their reading has been a simple way to offset the shame that has built up over the years. After all, learning how to get on in the world is more than just processing facts. School is more than the mastery of subjects. If we desire for our CWN to cope in the classroom, then we need to recognize that Narcolepsy affects their whole being, and in turn should look to address their whole person. Given that they spend the best hours of each day at school, it is paramount that their intellectual, psychological and emotional needs are met there as well as at home. Shame and its potential to undermine a CWN is something as carers and educators, we should not ignore.
When the summer draws to a close, I will meet with her new teacher and start this conversation over again trusting forth grade to be as positive as third. Perhaps I will write a handout that summarizes what could be an optimal learning environment for CWN so as to shorten these meetings and ensure that for the child dealing with a chronic illness, one that threatens their future, disruption to education is minimized.
For every CWN should have the opportunity not just to cope with their condition, but move beyond its limitations and flourish in and outside of the classroom.