Allergy Superheroes!!!

Knock, knock.  Hello?  Is anybody still reading this?  I suppose it may still show up in somebody's reader, even if no one stumbles across the actual blog.

Hi!  I haven't blogged about writing in a year, and that's likely to continue.  My writing has continued, regardless.  I do still write every day.  I've taken some time to write/perfect queries for a few projects, and am flooding the world with submissions.  I'm continuing to work on new material as well.  Steadily plugging away.

Today's post is not to bore you about the unexciting aspects of my writing life.  No, I wanted anyone who sees this to know that I am blogging again!  Just not here.

My husband and I are starting a company:

Allergy Superheroes, LLC
Empowering and protecting allergic kids!

We will be launching an exciting line of products to do just that!

Somebody you know is affected by food allergies.  Very possibly more people than you are aware of!  So please share the following links.  Share them far and wide (we love likes and followers!)  You never know when you will be helping someone out!

2nd Generation Allergy Mom (my new blog)
     http://2ndgenallergymom.blogspot.com/

Allergy Superheroes on Facebook
     https://www.facebook.com/allergysuperheroes
Allergy Superheroes on Pinterest
     www.pinterest.com/allergyheroes
Allergy Superheroes on Instagram
     http://instagram.com/allergysuperheroes
Allergy Superheroes on Twitter
     https://twitter.com/allergyheroes
Allergy Superheroes on Google+ (yes, we know it's cumbersome.  for now.)
     https://plus.google.com/b/105048131773286535054/105048131773286535054/about
Allergy Superheroes on YouTube
     http://www.youtube.com/user/allergysuperheroes

I hope all of you are still doing well with your writing.  Come say "hi" at the new blog, if you can!

Chaos

Chaos.  That would be an accurate descriptor for my life right now.  Zaxxon started preschool this week, only things aren't going as planned.  Just over a month ago, I found out that the program we had chosen wasn't licensed, and also wasn't certified to administer emergency medication--which is a big deal since Zaxxon has food allergies.  I'd been told months previously (February, to be specific) that they could easily accommodate food allergies, that they'd done it before, that the director had food allergies herself, etc, etc.  It never occurred to me to ask whether they were actually certified to do it--and therefore legally allowed to (we've got some dumb laws in this country--oops, you're dying but I'm not legally allowed to help you because you might sue me and say I was assaulting you, even though I saved your life.  Sorry.)

This all came to light because the director of the preschool program took another job, so somebody else got shunted into the position temporarily.  The new guy realized things weren't being done according to state law, and was trying to align everything.

Okay, fine (after I calmed down from my mommy-sized tantrum.)  So could they get certified?  I got the impression that he'd been hoping I would just go away and stop making an abstract issue come to life in front of him.  But since I didn't, he agreed, after talking to his boss, that they'd get certified for emergency medication.  They assured me that they'd have it covered by the first day of school.

Good.  I took them at their word, and proceeded to help Zaxxon get prepared, on all levels, to start going somewhere else a few days per week.

Fast forward to this Monday, September 10th, the day before preschool was supposed to start (yes, for some reason our program started really late.)  I get a phone call from the interim director saying that the teachers had taken the medication class and passed it, but that there was a nurse inspection element of getting their program certified which they hadn't been able to get done because their entire program wasn't licensed, and the state wasn't going to do that for an unlicensed program--so they couldn't accept my child at preschool the next day.

Excuse me, what?

Cue mommy-sized tantrum that completely dwarfs the previous one. Probably dwarfs anything I've done before.  I am not a confrontational person.  I tend to withdraw into a shell when debates and arguments are going on, but I told this guy exactly how upset it made me to have him call THE DAY BEFORE school starts, after all other programs are already underway, and tell me that I can't bring my kid in.  Was he saying Zaxxon couldn't come at all, or that they'd get it taken care of eventually?  He hoped they'd get it taken care of, but he was having difficulty getting ahold of the right people with the state to find out exactly where they stand and how they can proceed.  When would he know something?  He said he'd call me the next day, but that Zaxxon couldn't start.

The colossal inappropriateness of that timing still galls me.

Hours later, after tears, talks, commiseration, and much emotional turmoil (and all without even telling Zaxxon that school was cancelled yet) Hubby had an idea:  would they let Zaxxon come to class if one of us stayed on the premises?  I got ahold of the director the next morning, with less than an hour to go, and he agreed that staying was a good solution for the time being.

So Zaxxon still got to go to his first day, and his first week.  In fact, he never knew why Mama was so upset.  Nor did he know that I (and the second time, Hubby) stayed at his school, because I didn't want him to think that there was anything to be scared of at school.

But now things are in perpetual limbo.  The director is obviously frustrated with trying to get this sorted out--he's not getting calls back from key people and is warning us that things probably won't happen at the speed anybody wants.  And speed is my biggest concern right now, now that they're cooperating.  This is not a long-term solution--we don't want to spend three hours a day, twice a week, puttering around outside Zaxxon's classroom, overhearing the preschool activities while writing or doing other projects.  Not for any real length of time.

I like the teacher, I like what I've overheard of the program, but the way it's being run is not helping us.  I've begun a little preliminary looking at other programs in the area--all of which have started, but which sometimes end up with vacancies during the normal flux at the beginning of the year.  One program, which comes highly recommended from several friends, has a lot of quirks about its own scheduling--although their licensing and certification is 100% in order.  I'm reminded of the phrase "beggars can't be choosers," but this will also be a big part of our year, and I want it to fit with our life.

I never thought I'd have to be the parent to fight for my child's rights and safety at school.  I thought that was done already, and that I'd covered my bases months ago by selecting a preschool that had the right policies in place.  Silly me.  Naive me, really.  I didn't know specifically what I should be asking for.  I guess as parents, we walk the path we have to walk when it's necessary.

In addition to all of this, regular life goes on, and if I want to participate in the GUTGAA pitch contest, I've got less than 12 hours to polish my pitch.  And by polish, I mean write the dang thing.  It's halfway written in my head, but for some reason I've been dragging my heels on this pitch for years.  That's part of why I joined GUTGAA, to force myself to pick up those feet.  And now I'll have to deprive myself of sleep to do it.  Ah, life.  (You'll notice I'm blogging instead of pitching.)  Wish me luck.

See?  Would you want to disappoint this child on his first day of school?  He'd been counting down to it for a month!

Food Allergy Awareness Week

So apparently this is Food Allergy Awareness Week.  I never used to think much about this sort of thing because I was accustomed to my allergies and in a familiar routine.  Even when Zaxxon was diagnosed with allergies (different from my own, how inconvenient) I didn't worry too much.  Now, however, as he gets closer and closer to preschool and I will have to leave him in someone else's care on a regular basis... well, I'm putting more thought into it.

I thought, in honor of the Week, that I would share with you legislation that is working its way through the House and the Senate.  The School Access to Emergency Epinephrine Act will encourage states to adopt laws allowing schools to have on hand “stock” epinephrine auto-injectors – meaning epinephrine that can be used for any student or staff member in an emergency.  While a lot of schools are helpful and supportive about emergency medication (you can bet I made sure Zaxxon's preschool will be,) many still aren't.  A little girl died at school in Virginia early this year because she didn't have access to her Epi Pen.  The act is incredibly bipartisan, so you don't even have to guess at my political leanings.

If you're interested in supporting the act, here are sample letters taken from FAAN's (the Food Allergy and Anaphylaxis Network) website to send to your senators and representatives.  Thanks for caring!

Find your senators
Find your representatives

Find out if they already support the act (cosponsors):
Senate
House

If they don't support, send an email!
Senate:
MODEL Letter of Support for the School Access to Emergency Epinephrine Act

Note: Please paraphrase. It is important that Senators do not receive duplicates of the same letter from different individuals. Also, under your name, be sure to include your full address and phone number.

The Honorable (insert Senator’s name)
United States Senate
Washington, DC 20510

Dear Senator (insert name):

I am writing to ask you to co-sponsor S. 1884, the School Access to Emergency Epinephrine Act sponsored by Senators Dick Durbin, Mark Kirk, and a bipartisan group of 25 U.S. Senators. I am the parent of a child with severe food allergies. (Personalize here by inserting a brief description of your child’s allergies.)

Children with food allergies are at risk for anaphylaxis, a systemic allergic reaction that can kill within minutes due to asphyxiation or extremely low blood pressure. To prevent death, anaphylaxis must be treated promptly with an injection of epinephrine. S. 1884 would encourage states to ensure that epinephrine is available in schools and that school personnel are trained to administer it in an emergency. Epinephrine is safe and easy to administer.

The need for S 1884 was underscored earlier this year when a Virginia first-grader died when she suffered anaphylaxis at school that was not treated promptly with epinephrine. Nearly six million American children have food allergies and are at risk of anaphylaxis. Schools need to be prepared to treat allergic reactions in the event a student’s personal epinephrine auto-injector isn’t available or the student is having a reaction for the first time.

The School Access to Emergency Epinephrine Act is not a controversial bill. It is endorsed by the Food Allergy & Anaphylaxis Network, the American Academy of Pediatrics, the National Association of School Nurses, the National Association of Elementary School Principals, and other organizations.

I hope you will join your many colleagues of both political parties in co-sponsoring S. 1884 and working to assure passage of this legislation. Thank you for considering my views.

Sincerely,

Name
Address including city/state
Phone and/or email address

House:
MODEL Letter of Support for the School Access to Emergency Epinephrine Act

Note: Please paraphrase. It is important that Representatives do not receive duplicates of the same letter from different individuals. Also, under your name, be sure to include your full address and phone number.

The Honorable (insert Representative’s name)
U.S. House of Representatives
Washington, DC 20515

Dear Representative (insert name):

I am the parent of a child with severe food allergies, and I am writing to ask you to co-sponsor H.R. 3627, the School Access to Emergency Epinephrine Act, a bipartisan bill co-sponsored by over 40 Members of the House. (Personalize here by inserting a brief description of your child’s allergies.)

Nearly six million American children have food allergies and are at risk of anaphylaxis, a systemic allergic reaction that can kill within minutes. To prevent death, anaphylaxis must be treated promptly with an injection of epinephrine. H.R. 3627 would encourage states to ensure that epinephrine is available in schools and that school personnel are trained to administer it in an emergency. Epinephrine is safe and easy to administer.

Earlier this year, a Virginia first-grader died at school when she had an anaphylactic reaction to peanut that was not treated promptly with epinephrine. Schools MUST BE PREPARED to treat allergic reactions in the event a student’s personal epinephrine auto-injector isn’t available or the student is having a reaction for the first time.

The School Access to Emergency Epinephrine Act is endorsed by the National Association of School Nurses, the National Association of Elementary School Principals, the Food Allergy & Anaphylaxis Network, the American Academy of Pediatrics, and other organizations. It is not a controversial bill.

I hope you will add your name to the list of House Members, both Republicans and Democrats, who have co-sponsored H.R. 3627 and work to assure passage of this legislation. Thank you for considering my views.

Sincerely,

Name
Address including city/state
Phone and/or email address

Walnuts Scare Me

You probably don't know this about me, but I have severe food allergies.  I'm allergic to tree nuts.  I don't think I've ever mentioned this before, in large part because it doesn't take up much mental effort on my part.  I've been allergic since I was tiny, so label reading, asking questions, and avoiding certain foods/situations are all par for the course.  I've been bitten on occasion if I assume too much (after all, who puts nuts in egg rolls?), but by and large the situation is under control.

By the same token, I don't have to expend too much energy on Zaxxon's food allergies either.  The little guy unfortunately inherited my flawed genes, and is allergic to egg (confirmed) and peanut (unconfirmed.)  When we went to the allergist after his first taste of scrambled egg, my primary reaction was "Really?  He didn't get the memo that he was supposed to take after his Daddy?  *dramatic sigh*"  And then I incorporated egg and peanut into my existing food avoidance routine and moved on.  It wasn't the earth-shattering diagnosis it is for newly-initiated allergy parents (like my parents nearly 30 years ago) because I already knew how to live with it.  The allergist and pediatrician also advised that we keep tree nuts out of Zaxxon's diet until he was three or four as a precaution because of my allergies, even through skin tests were negative.  Which we've done.

Well, Zaxxon is now three.  He communicates fairly well.  He still doesn't have the words for a lot of things, but he can say enough to give us the idea of what's going on, especially when we ask him questions.  And even though he's never going to encounter tree nuts regularly (at least not in this household,) I'd like to know whether we have anything to fear from accidental exposures.  So I've decided it's time to introduce him to tree nuts.

Our first forays were uneventful--and inconclusive.  He said he didn't like the foods we offered him, which consisted of an Almond Joy from his Halloween candy and a piece of Pecan Tart from hubby's Christmas treats.  Nothing happened after these tastes, but I wanted to be certain "I don't like it" didn't mean "it makes my mouth feel funny."  So I enlisted my parents and in-laws to make eggless cookies and/or brownies with ground up nuts in them.  This way I could be certain he likes the delivery method enough to eat a significant amount of the nuts--thus ensuring me that nothing will happen.  My mother arrived the very next week with a bag of chocolate chip cookies.... with WALNUTS.

There's nothing like facing your fears head-on.  When it comes to other nuts, I can recognize them as food.  I'm disappointed when I learn that they're an ingredient in something that looks tasty, but they don't diminish a food's integrity.  I understand that other people like them.  Walnuts, however... well, they've got to be the scariest nuts on the face of the earth.  Even as an adult, when I learn that something has walnuts in it I wonder, "Why would anyone do something like that?  Why would you ruin a food?"

It's a reaction purely driven by instinct.  After all, walnuts are my kryptonite.  Every time I've had the misfortune to encounter them, they've knocked me flat.  (And really, who puts walnuts in egg rolls???)  So when Mom handed me that bag (carefully double-wrapped so I wouldn't touch the contamination) my blood pressure raised by a few points.

I pondered the repercussions for the rest of the day, until halfway through dinner I decided that that night would be the night.  Walnut cookies for dessert.  Then I proceeded to worry through the rest of dinner.  Zaxxon was in a funky mood already and didn't want to eat dinner very fast, which only served to extend my anxiety.  By the time he finally finished his dinner, I was wound as tight as a spring.  Then, with Epi-Pen tucked close in the pocket of my hoodie (I didn't want to hover and worry him, after all) I had hubby offer him one of the poisonous cookies.

I quite literally felt like I was holding a gun to my child's head.  I mean, these were walnuts.  Something was going to happen.  Something was supposed to happen.  That's just the way it is.  Nobody who eats cyanide thinks it tastes good.

Well, I'm happy to report that nothing happened.  Nothing except that he loved his Ama's cookies.  As the tension began to release, it was replaced by a new concern--concern for myself.  Have you ever seen a three-year-old eat a cookie?  Or any food, for that matter?  M-E-S-S-Y.  Crumbs everywhere.  Having hubby wash his face and hands afterwards wasn't going to be enough, the whole table needed a scrubbing.  With soap.  And his chair.  Plus, he made like he was going to touch every wall and surface between the table and the bathroom sink, which hubby had a job preventing.  Maybe this wasn't such a hot idea after all.

It wasn't until the fourth and final day of walnut cookies that hubby and I figured out that he ought to eat them outside.  Let the birds, bugs, and elements wash the allergens away for us.  Much easier that way.  Safer too.

I learned a lot of things during this experiment, mainly about myself, but also about how we're going to have to handle food allergies as Zaxxon (and Kal'El) get a little older.  For now, I'm happy to have the walnuts out of the house, and I'm very happy that they aren't going to kill my first baby.