It is natural for kids to be narcissistic, thinking mostly about themselves and their personal situations, until they are tweens (10-12). Scarlet, being only 7 at the time of this writing, doesn’t totally understand how different her hearing situation is from most other people.
One difference that Scarlet is well aware of is her hearing equipment. In her book we mention the great advantage to being able to NOT hear when it comes time to go to bed. This is true… not the monster creeping out of the closet, but everything else. When Scarlet wakes up in the morning, she can’t hear anything until she puts her coils onto her head. This means that Scarlet, a 7 year old, is wandering around the house, completely oblivious to any sounds happening around her.
[As I type this, at 5AM in May with the windows open, I hear birds singing and traffic zooming on a busy road near our house. Scarlet will never know the experience of waking up to birds chirping.]
Thankfully, it is not difficult to equip Scarlet with the tools for hearing. There are several companies that offer cochlear implant equipment. The one our family went with, Advanced Bionics, has a couple of different devices (at the time of this writing; technology is changing all of the time). One of them allows the processor to be clipped to her clothing. This one has a long cord that reaches from the processor to the coil that sticks to Scarlet’s head. A couple nice things about this equipment is that it is easy and fast to put on. It can clip to anything; Sometimes I clip it to Scarlet’s hair! Another great thing about this device is that it is waterproof. Some drawbacks to this one, though, are that its batteries are hard to get to and need to be changed often. Plus, the long cord gets caught on things and pops the coil off a lot.
The other device that Scarlet has for hearing attaches to the back of her ear with double-sided tape. An earlier version of “Scarlet’s Superpower” had the word tear in it on page 4, when it says, “I reach up and slowly, carefully remove one of my sound processors.” We removed this word because we didn’t want the book to be disturbing. That could diminish the message of the text. The truth of the matter is that every night we DO have
to rip the processors off of Scarlet’s ears. And, many times it really hurts her, pulling a hair that is stuck in there. Also, I fear for my daughter’s skin behind her ear. Some advantages of these devices are that they are smaller with shorter cords, lighter in weight, the batteries last longer, and they have the ability to attach an additional device that allows her teacher to use an FM speaker system to broadcast directly to her cochleas. (This last feature may be the subject of a future book; one about her bionic abilities.)
A serious drawback of this latter device is that it is NOT waterproof. This is where the subject of this blog comes into play. Scarlet has recently begun complaining a little about not being able to go outside for recess if it is drizzling or if rain seems imminent. Having her equipment break is too risky. One thing I didn’t mention about the equipment, and I won’t expand upon, is that it is a hassle and nuisance to have to get any of it replaced. Thank goodness we can and it is possible, but it is FAR from convenient.
Scarlet’s Superpower, albeit totally awesome, and it truly is, came from a desire to help Scarlet feel good about being different. “I might have to stay inside when it is wet out, but I don’t have to hear the fire alarm.” My aim is to empower Scarlet AND kids like her with this new, SUPER attitude or way of looking at their disabilities or special conditions, a positive outlook.
We are already seeing it play out when we hear from children telling us that they are okay with wearing glasses because they now view it as a superpower. Please, share more of these stories with us. And, share “Scarlet’s Superpower” with others, because this is one of those synergistic powers, in that, rather than being depleted, the more it is shared, the greater it becomes. That will be the topic for another blog.