Photo by Rebecca Gould Photography

Saturday, August 22, 2015

Turning 13 (A Moral Musing)

Thirteen is a funny age.
Mature, grown, and yet...not really...for think how much growing and maturing most 13-year olds have left to do.

I still remember being struck by the fact that Susan was required to sign an "assent" agreeing to her continued participation in PRROTECT when she turned twelve...

And now that Susan is thirteen, I cannot access her medical records without her assent (I was shocked when our pediatrician's office e-mailed me the form she had to complete in order for us to have continued access to her records).  What happened to turning 18?  21?
(What does this early coming of age mean?)

While we are not Jewish, we live in a community with a significant Jewish population, which means that many of Susan's friends became bat or bar mitzvah over the last year.  Susan's younger brother has a thirst for knowledge, and I often find myself googling things so that I can more fully answer his questions.

Last year, at one point, I found myself reading about what it "truly meant" to become a bat or bar mitzvah.  I was struck by this:  "a bar mitzvah is not a full-fledged adult yet, but Jewish tradition recognizes this age as the point when a child can differentiate between right and wrong and hence can be held accountable for his actions."

The article went on to explain that in most states, children can legally begin working part-time at the age of fourteen (who knew?!) and that in many states, children under the age of 18 can marry, as long as they have parental consent.  The article also noted that children in their teens can be treated as adults in criminal proceedings if the circumstances of the crime warrant such treatment (of this, sadly, as a forensic social worker, I was well aware).

All of this confirmed what I already thought -- that thirteen is a funny age...a sort of in-between...old enough to be responsible and mature, at an age where good decision-making is expected...and yet young enough to still require parental oversight and supervision.

We saw Susan's new allergist, Dr. Bajowala, one day before Susan's thirteenth birthday (for an OIT peanut updose appointment).  During Susan's post-dosing observation period, Dr. Bajowala began exploring what Susan's friends know about her food allergies.  I was initially surprised by Dr. Bajowala's interest, and then I realized where she was going, why she was asking.

I think Susan was a bit surprised by Dr. Bajowala's inquiry, too, for she initially responded without really engaging, saying something along the lines of (simply) "my friends know I have food allergies."  

Despite Susan's somewhat disinterested response, Dr. Bajowala persisted.  As the conversation unfolded, it became clear that Dr. Bajowala wanted to know if Susan's friends would be able to recognize an anaphylactic reaction, if Susan's friends would know what to do if she became unable to ask them for help.

As I listened carefully to the discussion between Susan and Dr. Bajowala, I realized how very right Dr. Bajowala was in pressing Susan to think about these issues -- for Susan is moving into one of the most difficult, risky periods of her life with food allergies -- adolescence.  (While I believe -- and hope -- that Susan's grasp on the severity of her food allergies is such that she will NEVER engage in food-related risky behaviors, and while I believe -- and hope -- that at this point Susan understands the potentially devastating consequences of not have epinephrine when needed, I also understand that -- statistically speaking, at least -- the teenage years are fraught with increased danger for those living with food allergies.  While I also believe -- and hope -- that Susan's progress in OIT will provide her with a substantial layer of protection from any exposure to peanut, I am keenly aware that we are not done yet...and I believe Susan understands this...)

As Susan and Dr. Bajowala talked, my thoughts wandered.
Susan needs friends who understand her food allergies.
Susan needs friends who will respect her dietary restrictions and never, not ever push her to eat something that even might be unsafe.
Susan needs friends who know the symptoms of anaphylaxis (even, especially) the sneaky ones.
Susan needs friends who know where her epinephrine is.
Susan needs friends who will not ever hesitate to administer epinephrine.

Fortunately, Susan has a great group of friends, and I have been consistently impressed with the ways in which they have supported her -- especially during the confusing middle school years.  Before OIT, Susan rarely ate out, ever, anywhere.  Since OIT, and clearance to begin eating at previously unsafe places, Susan has enjoyed countless outings with friends who seem to have just been waiting for the day they can hang out and enjoy a treat together.  Thus far, I've been along for every single outing, but the day will come when I won't be there...(and that's okay -- I really don't need all that ice cream, anyhow!)

Realizing the tremendous importance of what Dr. Bajowala was addressing with Susan, I joined in the discussion to help Susan formulate a plan...although once she understood what Dr. Bajowala was suggesting, she had some very good ideas of her own.

Susan's birthday party was scheduled for the following day, and recognizing the importance of what she and Dr. Bajowala had discussed, Susan decided she wanted to show her friends How To Stay Alive (the epinephrine usage PSA she made over the summer), and then she wanted her friends to practice administering epinephrine by injecting expired EpiPens into an orange.  (That will make an impression, I thought, as we talked about her plan.  Memorable party, for sure.)

As I thought more about it, I wondered how her friends' parents would feel about this part of the birthday party (I also wondered how receptive her friends would be, too), and then I decided that it was important enough to do it that I was going to simply send a quick e-mail telling her friends' parents what we would be doing (along with a link to the PSA) and...proceed.  As scary as it can be to think about (or witness --even after the fact) anaphylaxis, as a mother, I want all of Susan's friends to know what to do in the case of an anaphylactic reaction...and not just for Susan.  I want to be a part of building a community of young teenagers who know how to take care of each other.

It was incredible.
The room was silent for the 7 minute showing of How to Stay Alive.
No one moved.

And when the PSA was over, Susan's friends were eager to administer epinephrine to the orange.  One of Susan's first friends to take a turn injected the EpiPen into the orange quickly and confidently, but then pulled it out too quickly -- we could see medication dripping from the tip of the needle.  Susan was quick to reassure her friend that she had made the same mistake.  The friend asked to try again.  She wanted to get it right.  A younger friend with food allergies studied the orange very seriously before carefully and precisely injecting the EpiPen.  A friend whose youngest brother suffers from more food allergies than I can list swiftly administered the epinephrine, while yet another hesitated and then pulverized the orange.  We learned from each and every one of Susan's friends that day -- including the one who watched carefully but just wasn't quite ready to do it.  

Susan and her brother administered the two expired Auvi-Qs, and even after having used a real Auvi-Q, Susan still thinks she will go for the EpiPen first.  I don't care what she uses, as long as she is able to take care of herself.

I have thought a lot about that day, and I am increasingly glad Susan created an opportunity during her birthday party, when most of her close friends were with her, to do this.  

If we want to teach our children not to bully, not to tolerate racism or random acts of violence or other wrongs in the world, we should also be teaching our children how to take care of each to recognize subtle bullying, how to really, truly see that which is happening around them...including signs of anaphylaxis.

If these young-adult-children-teens are "old enough" to be assigned homework that includes following international news (and they are), they are "old enough" to learn how to take care of each other.  As the mother of a child with life-threatening food allergies, I have a moral responsibility to impart important information regarding food allergies and anaphylaxis to these young-adult-children-teens.  We have to start at some point...and thirteen seems just as good of an age as any other...

For shouldn't I want these young-adult-children-teens to be able to recognize anaphylaxis in the same way we want them to recognize bullying or racism or a random act of violence???

For shouldn't I want these young-adult-children-teens to know what to do in the case of anaphylaxis much as I want them to know how to intervene swiftly, decisively and effectively in the face of bullying or racism or random violence???

Yes -- and now, a group of Susan's closest friends are one step closer to being able to truly, definitively, effectively intervene should they encounter anaphylaxis.  Knowledge is power.

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