Can the Child with Narcolepsy Thrive? (Part Two-Dealing with Shame)
Of all the psychosocial threats to our CWN thriving, shame is the biggest. In a recent paper published in 2006 it was reported that shame is prevalent in over 90% of CWN. Shame, I discovered, is defined as “a painful feeling of humiliation or distress caused by consciousness of wrong or foolish behavior.” CWN experience shame that is brought about by the desire to hide their Narcolepsy and feelings of being “no good," and yet they've done nothing wrong.
Shame is best understood by us as parents asthe opposite of worthiness and the fear of disconnection.
Our CWN believe there is something about them that is unworthy of connection. And that something is Narcolepsy.
And their response to frequent feelings of shame is to withdraw and control.
And we see it don't we? Withdrawing from their environment and yet trying to control it too.
So, because this issue is rarely addressed by doctors, and because it's my responsibility to raise my children well I began asking myself, What do I need to do to help Mathilda with this problem?
And frankly, it is a big problem. Some days I feel it's bigger than everything else, like the nights or having cataplexy during PE.
Yesterday was one of those days. So I offer the following things I've learned lightly because in any given week, I fail to raise my CWN as I should.
How can we as parents offset the psychological threat of shame?
Acknowledge all their their symptoms, needs, desires and choices: Recognize that their tired is not the same as your tired. It’s much, much worse. Narcoleptics experience life differently. It’s hard to accept but it’s true. And I frequently wish I could experience what Narcolepsy is really like so I can better understand what Mathilda is going through. I've learnt that blowing off her complaints only negates her feelings.
Respect their habits and give control over decisions: Control empowers the child to know what they need and own who they are. In our house their is the need for private downtime--which Mathilda takes in her room alone. When our days are over-scheduled she quickly feels overwhelmed and falls apart. She needs to be able to make choices about her time otherwise she seeks to control her environment and relationships.
Encourage CWN to recognize their limitations and pace themselves: The Spoon Theory comes in handy here, a term coined by Christine Miserandino who has lupus. She explains what it is in an article entitled, “but you don't look sick.”
I've modified the theory slightly to help Mathilda pace herself through the days with naps. At first I explained that if she took a nap, she'll get a spoon back, enough energy to see her through the next few hours. But she tells me that it's only half a spoon, not a full one and that's OK because the point is we are not using the the dreaded nap word and she's beginning to understand the importance of pacing herself. So I might say "do you need to get half a spoon?" And it's become our little code--particularly helpful when we're in company and I can see she's struggling. Older children might prefer another tool, something like a Fitbit to help them listen to their bodies.
Positive reinforcement of their role as a valued family member: I tell my kids that for now they have two jobs in life. One is to go to school and learn, the other is to contribute to the running of the home. In my mind I think very carefully about what chores are appropriate, but what I communicate to Mathilda is that she doesn't have a free pass. So for example, every Monday as we pull up the drive, and it's the kids job to drag the trash cans behind the house. It’s great because there are three trash cans and I have three kids. But one is often asleep. And if she is, then that’s fine, I don't make her get out and drag it out. However, if she isn’t asleep then she needs to get out of the car and pull her weight--she's not excused from making a contribution to family life. Often, she takes twice as long as the other two whilst complaining about how everything hurts. It's hard to watch but I've been very tempted to jump out and do it for her, but one day she'll need to know how to run a house so these life skills are crucial. Letting her off chores will only hold her back in the long run.
Hope for the future: Mathilda wants to run a farm or be an artist or a Mom. And why not? We tell her she can be anything she wants to be and we back it up with positive role models like Julie Flygare who runs marathons on top of a full time job and advocacy work, and Nicole Jeray the golfer. And what about Harriet Tubman, Winston Churchill, Luis Braille and, dare I say it, Jimmy Kimmel?
Physical touch: We can't take away their pain, but we can be with them in it. It’s what I call couch time. We can stroke them, hold them, brush their hair or if they're not into that we can still be physically present, playing the Xbox, board games or whatever. Being physically close to our kids (with or without Narcolepsy) encourages their connectedness.
Foster independence: Move with them at the rate of their development and need for independence. This can be hard when our instinct is to coddle and protect them. The Professor sometimes disagrees with me here, but we usually compromise and find a way to give Mathilda a bit more rope when she's ready. Back in the summer she wanted to start taking Xyrem alone. It's not safe for her to do that yet but the Red Box was a halfway measure that seems to be working and she's making baby steps towards independence which in itself has been empowering.
Good friends: Positive socialization is paramount but we know that some friends get it and some don't. Some let Mathilda sleep half way through a play date and some wake her up because they're bored--which never goes well. It's understandable on one level, but it's not rocket science to figure out who gets to come back.
Opportunities to think beyond themselves: Perspective gained by volunteering to help others in need in any shape or form always gives context to one's own suffering. It's no different for our CWN.
Acceptance and validation: Our degree of acceptance of them as individuals impacts directly on how we as parents relate to them. We are their first and foremost reference point (until they his the teens) and they’ll take their cues from us. If we’re struggling with it, they will. Our job as parents is to accept their condition and tell them they are worthy of love and belonging. Validating their struggles offsets their feelings of being disconnected.
Find an outlet for frustration: Following surgery for sleep apnea a few years ago, Mathilda began self-harming. At five years old she was making a cry for help that left us feeling well and truly out of our depth. Just before we began looking for psychological support for her, she began to draw. This became her outlet that explains why there are piles and piles of papers stacked by her bed, all full of pictures and comic style stories. Art is her outlet and it's something she needs to do every day.
Normalize the nap: It sounds crazy but the fact that the dog sleeps all day, and the Professor catches up on lost sleep sometimes at the weekends helps Mathilda feel that she's not the only one who needs to check out. She'll even put Daddy to bed sometimes then walk proudly out of the room knowing it's someone else's turn. At other times, of course, I find them both curled up together for an hour. Not a bad way to spend part of a Saturday afternoon. Parenting the CWN, a final word ...
Our CWN are unique. And we, as parents, are uniquely suited to navigating them through to adulthood. There is no one else who can do a better job than we can when it comes to understanding all that they face, providing them with an optimal environment at home, and advocating for their needs outside of it.
With our understanding, love, and validation we can be confident that Narcolepsy need not misshape our children now, or at any stage of their lives.
This post is the second half of a presentation I gave at the 2015 Narcolepsy Network conference in MN. I am not a psychologist and firmly advocate that many CWN require professional psychological support at different stages of their development. The above suggestions are merely strategies we have found helpful but are consistent with many parenting resources on raising children with special needs.