Dear Bullies: You Can't Stop the Go.

She was our baby then, our first baby, so small and so very wise - waking only occasionally to gaze solemnly at the foolish, naive parents chosen for her. Just look at those grins.

We would have given up everything for her. We gave up our previous inferior selves to be her advocates, her champions, to seek out cures and therapies and to defy everything we were told about limitations and obstacles. And we won, the three of us. Every time we watch her now in amazement and surprise, listen to her speak, we know we won.

Don't ever forget, Bullies, that she's still our baby now - not as small, but just as wise and in many ways a vast improvement over the previous models (that would be us). We're still her advocates and if you think we're helicopter parents that's fine with us. It's easier, less jolting, to fight for her now. We're used to it. So don't bother looking at us that way. We've seen your face before, a hundred times or more, and we couldn't care less. We're so over you.

When you find one of her lingering weak places and you poke her there - how dare you poke her there - are you trying to interfere with her potential? We've seen what she can do with that potential - it's as big as the biggest thing you can imagine with your wee, stunted, wasted imaginations. As big as an iceberg, a mountain, an ocean, a canyon. Think bigger - the sky filled with stars on a dark, clear night at the farm on a hill that we bought for her and her brother. You don't know what you're messing with - jabbing so ineffectively at something that big. Who's foolish now?

You won't stop her. You can't. This situation that is our daughter is all about the go.

If she doesn't fight you herself, we will. And we'll win. And we'll keep winning.

To Do This Year. Numbers 11 - 20.

And the rest of the list....

*11. Create a second edition of Recipes from Boomer Township and Beyond. [Add more recipes and anecdotes, correct one typo, and consider adding a genealogy chart. This is a very big project and I'm a bit worried about completing it].

12. Read 100 books and record/rate them on Goodreads. [I'm at 4 books so far in 2012, which Goodreads says is 2 books behind schedule!].

13. Crochet and/or embroider at least one Christmas gift for each of my loved ones. [Making a list of ideas for each person in my journal and will begin these projects soon].

14. Embroider a family tree. [Mom gave me a pattern for Christmas - can't wait to start it].

*15. On the weekend, plan each day's after-school schedule for the upcoming school week. [I HATE this activity. I'm not gonna lie. I am definitely not a schedule-every-moment person, and it freaks me out to plan ahead like this! But having a schedule to consult greatly improves Henry's ability to successfully manage his afternoon/evening, and that's in the best interest of our family].

16. Significantly expand vegetable garden and freezing/canning/dehydrating of resulting produce. [Seed catalogs are being perused and plans being made].

17. Plant indoor herb garden. [Easy project - just need to do it. Where will I get seeds or cuttings at this time of year?].

18. Continue to volunteer in the school district at least once every two weeks. [Concession stand has been my home away from home this winter, so I'm ahead of the game on this item]. 

*19. Finish the floor in the upstairs hallway. [Procrastination. No more excuses].

20. Decorate the bathrooms. [Would like to be completely finished with these two rooms! In limbo now].


*These are the most difficult or overwhelming projects. Hold me.

Anyone else have resolutions to share? Reading others' lists is very inspiring for me. Plus, I'm nosy.

To Do This Year.

Here are numbers 1 - 10 of my resolution-y items for 2012, at long last. Stay tuned for numbers 11 - 20... hope this isn't as super-boring as I fear it might be...

1. Continue walking at least 15 miles each week, preferably more. Wear pedometer and log mileage. [I walk with a friend which makes this task super-fun. She and I are both committed to the activity, so I don't foresee any problems succeeding on this item!]

*2. Continue using whole foods to create healthy meals, relying less and less on processed foods. Plan menus and shop once a week. Include at least one new recipe every two weeks. [I have a love-hate relationship with cooking, and it has gradually improved now that I have access to better produce and eggs that we lovingly nurture into existence at Harmony Farm. New recipes are the special challenge for this creature of habit].

3. Journal and/or take photographs daily. [Giving myself a choice depending on what creative activity is the most appealing that day should help with this item.]

4. Update blog and/or flickr at least once each week. [Assuming that item #3 will better position me to succeed at #4].

5. Create a new copy of Sharon's Recipes. [Already started this task during winter break. Original copy is so messy after years of hard use that succeeding at this item is very necessary].

*6. Create annual photobooks of backlogged family pictures from 2006 and 2007. [Huge backlog is overwhelming. Sure hope I can get at least two years' worth in print].

7. Hold informal dinners for family and/or friends at least once each month. [Already had Mom and Marvin over this month for Mom's birthday. I love having people visit, so this shouldn't be a tough one].

*8. Actively avoid venues in which Henry is 1) cast in the role of "misbehaver" AND 2) our attempts to change the situation are thwarted. [This is a VERY tough one for me, because I hate disappointing or upsetting people. But we know what's best for Henry, and we feel more and more strongly that when folks expect him to fulfill this bad boy role, he will. Already made a painful decision a couple months ago to eliminate one venue and will continue to seek out positive settings for our sweet boy].

9. Work with Maria and Henry individually to develop at least two of the various new interests they have mentioned lately. [For example, Maria wants to start gymnastics and TKD, and Henry is still interested in archery, sewing, and cooking. Love to see them explore new interests].

10. Work with Maria and Henry individually to complete at least six 4H projects each, and encourage them to put together outstanding record books. [No problem yet - we already have plans in place, and just need to keep plugging away].

*These are the toughest ones for me from this list - so tough!

My Baby's Sick. And Steroids Are Scary.

Henry's been coughing since November, when he contracted a run-of-the-mill virus and it caused an asthma flare. When the kids have respiratory illnesses, our pulmonologist doesn't really want to see them. No, no, he doesn't want cooties in his office and instead he provides us with two copies, one for each child, of a generic Asthma Action Plan. The nurse who types them up uses a template that is meant to give the impression they're customized for each individual patient, but there's no fooling me. The plans haven't changed in the nearly eight years we've been putting our kids' pulmonary lives in Dr. DeepBreath's capable hands - Kid coughs? Use albuterol inhaler. Coughing stopped for at least three hours? Good. Keep using the inhaler every three or four hours if the cough comes back. Coughing didn't stop for at least three hours? Uh-oh....

Shit just got serious.

Now Kid needs massive doses of steroids twice a day. And if Kid's chest isn't perfectly clear after 10 days, Kid will continue taking steroids once a day for as long as it takes. Meanwhile, Kid will feel miserable, not only from the cough/pneumonia but from the steroids. Stomach will swell (kid might need a whole new wardrobe - seriously). Face will swell. There will be grouchiness swooping to unbound joy swooping to devastation, all of it unexplainable and surprising to other family members. Blood sugars will shoot skyward. There will be overheating, flushing, and cold sweats. Oh, and don't forget the tachycardia. At least once during the steroid burst, Kid will be so ill from steroids that a visit to the local ER might be necessary. [note: most of this paragraph is not actually part of the Asthma Action Plan, but that doesn't make it less true].

So at our house we work hard to skew and spin symptoms and responses to treatments in a desperate effort to out-maneuver the Dastardly Asthma Action Plan.

*COUGH-COUGH-COUGH-Cough-Cough-cough-cough-cough-cough* [pause] *wheeeeeeeeeeze*
"Hmmmmmm. How long has it been since his last hit from the inhaler?"
"Ohhhhhh, quite a long time. I'd say at least four hours."
"Well that explains it! Henry, please use your inhaler again! It's time!"
{we both know that four hours ago it was 3 am and no one was using an inhaler. we avoid looking at one another}
*COUGH-COUGH-COUGH-dramatic RETCH-COUGH-COUGH-COUGH-gasp*
"That sounds bad."
"Yeah, and his face is all purple now."
"He definitely didn't take enough hits from the inhaler - he needs to do at least six."
"Yeah, that must be it."
*COUGH-COUGH* "I did TEN!" [indignantly]
"You're not doing it right, Henry. Are you sure you're doing it right?"
"Yeah! Are you sure you're doing it right? I don't think you're doing it right."
*COUGH-COUGH-COUGH-RETCH-eyeroll*

So, anyway, today we got caught. Maria had an appointment, and because Henry was up all night coughing until he retched, he had to stay home from school. And therefore he had to come to the appointment. As I filled out paperwork in the waiting room, Henry coughed for the first time since our arrival. Rats.

Nurse J: Henry! You poor baby! Dr. DeepBreath needs to take a listen to you.
SnicketyMe: [quietly but with urgency, points out wastebasket next to Henry's chair and raises eyebrows at him meaningfully - just in case] I was kinda hoping you wouldn't have to hear that, J....
Henry: [face turns lovely shade of purple] COUGH-COUGH-COUGH-cough-cough-GASP!!!
Nurse C: Good Lord!
Nurse J and Nurse C: [shake heads at each other in disappointment at my utter disregard for the Asthma Action Plan]
SnicketyMe: *disgraced*

And we were swooped into a room immediately. Dr. DeepBreath has a particular style for his appointments - for the first part, before the examination, we sit and watch a movie while he peruses his notes from previous appointments and reviews the paperwork I fill out for the current state of affairs. This activity takes quite a while, and his back is to us the entire time. Within two minutes, Henry began hacking up a hairball in his corner of the room. Dr. DeepBreath turned around excruciatingly slowly on his spinny chair and regarded Henry with raised eyebrows and a very serious expression. Then he did the same to me.

And that's when the wheels fell off the wagon. So to speak.

Lots of comments were made after that. None of them were flattering to my person and/or my management of Henry's disorder as indicated by the ASTHMA ACTION PLAN, so I'll just share the one that changed my mind: respiratory distress, he's close to being in it.

Henry took his first dose of steroids this evening. Hold us.

Hair Rebels.

January 22: Hair Rebels., a photo by snicketyone on Flickr.

I cut Henry's and my bangs, but left the rest long. Although I'm a woman of a certain age, and Henry is clearly a male, we enjoy our long flowing locks. So there, Society! (I like short hair, too - it's all about choice!).

My Favorite Obsession.

January 15: Mini-Figure Parts., a photo by snicketyone on Flickr.

I'm through denying that Henry's autistic, although I'm still peeved at the doctor who laid it on me abruptly, in front of Henry himself, who thought Asperger's sounded frightening and like it might even be a terminal illness. (Trying to let this go.... trying....)
Anyway, autistic people sometimes get obsessed with things. It might be the Titanic, or Star Wars, or Harry Potter. They might want every book and product even vaguely related to their topic of choice. They might talk nonstop about their topic of choice. They might carry around a tattered catalog containing items related to their topic of choice. You might feel like you can't stand to hear one more word about the topic of choice, and right about that time, if you're lucky, your favorite autistic person will move on to a new topic of choice. *whew*
Henry's latest obsession is sorting and sorting and sorting the parts of his Lego mini-figures. He sorts the parts, makes thirty or so mini-figures, shows us how nice the mini-figure case looks, and then says, "Let's sort mini-figure parts!" and to my dismay, dumps the whole thing on the floor. I've sorted a lot of parts this winter, to Henry's precise specifications (grey and blue pants/legs can be in the same space, but tan short pants/legs must be separate from tan long pants/legs, and heaven forbid the "odd helmets" get mixed in with the" regular hats"....). I don't actually mind this activity; after all, it ends with neatness. It makes Henry happy. It makes me happy. And it is certainly preferable to his previous obsession: tree forts. He would take tools and cardboard boxes and wood and nails, and climb trees. He'd nail things up high in the branches, and then sit up there for a few moments. I did not enjoy coming outside to look for him and finding him perched inside a cardboard box, which was attached to a fifteen-foot high branch by two nails. This obsession was peaking about the time that my mom came out to watch him one day when I needed to take Maria to an appointment. Mom was sitting under a tree reading a book and supervising Henry's activity.... and he suddenly plummeted out of the tree branch high above her head, his body falling straight down in front of her and landing on the ground with a loud thump. Somehow the crash of hundreds of mini-figure parts hitting the ground doesn't seem so bad compared to that.

He Eloped.

It's been a bit of a bad week, and I won't bore you with the many reasons why - let's just say this: the thing that finally broke me (temporarily - for like 10 minutes) was this - Henry's been flagged by our insurance company as someone who needs a case manager. He had a case manager when he was a newborn just home from the NICU, and I hated every moment of the intrusive phone calls, myriad stupid questions (how much does Henry weigh today, Mom?), oh yeah, the way she always called me "Mom" instead of using my actual for-real name, and finally, because I knew in the very pit of my cynical little heart that they would not be paying someone to be our case manager in order to get us the services we needed - oh no, it would be to AVOID getting us services whenever possible. Cha-ching.

So, to sum up: it makes me furious. I hate the questions and nosiness and talking about his various problems with someone I don't know and trust (I would be terrible at having Munchausen's syndrome by proxy, so we can all mark that disorder off the list of things that make me ME). I hate the insinuation that Brian and I can't manage Henry's healthcare alone. I don't like talking on the phone, especially to doctors and nurses and therapists and other medical folks, much as I appreciate them for what they do, and I sure don't want to spend precious time gabbing with a case manager, too. This whole situation makes me don my crabby pants, have you noticed?

And it breaks my heart that Henry's sick enough to need this sort of assistance. My first instinct is to say that he isn't, and that we should stop all this nonsense. It makes me want to isolate. To take Henry and steal away to a hidey-hole where there are no doctors' appointments and medication changes and surgeries - to pretend everything is perfectly OK (which is what I do most of the time anyway - and I believe everything IS perfectly OK, in our family's way, that is. We are certainly coping.). And I want to convince the insurance company of that - to call and tell them that they are WRONG about him. But then I'd have to talk on the phone, so I think I'll just duck their calls for as long as possible. Yep, that's my plan.

Speaking of running away to my own little world: one of the things that did NOT make this a bad week is that on Thursday Henry went missing for 50 minutes. I say it didn't make it a bad week for two somewhat intertwined reasons: firstly, it is such a common thing to happen that it is really a non-event for me. And it is a non-event for the simple reason that he was lost, and then he was found. He was perfectly fine the entire time, oblivious to time and place, lost in his imagination but not physically.

As for me: I was really OK, too. For one thing, he was lost at home, not in a public place that I didn't know well. I knew I was doing what had to be done: searching the most dangerous spots first (creek, grain bin), methodically walking around our property and up and down the road calling for him in a friendly voice, and watching the time. At the 60-minute mark, I planned to call for back-up (our wonderful neighbor first, the police officer who lives four miles away second, and of course Brian). After 45 minutes, I was tired, my voice was giving out, and I could feel a little tingle of panic beginning - and then he emerged from a cornfield a few minutes later. (I never enter a cornfield to search for him - then we'd both be lost! They are so disorienting!).

My point is that autism elopement is real, and it's dangerous. Autistic children are prone to wandering, and when you combine that with their attraction to water - well, it sends chills down my spine. We've dealt with wandering tendencies all of Henry's (mobile) life, and for us it has never been life-threatening because Henry is verbal and very high functioning. Even for us, though, it has in the past required the assistance of store clerks, library staff, police officers, and implementation of the "Code: Lost Child" procedures in libraries and department stores in various communities. Yes, we've caused the lock-down of buildings. I've stood in the middle of a store, crying and terrified, while the police searched the parking lot for my missing two-year-old.

I'm so lucky that even though Henry's nine, he will still hold my hand when we're out and about. That helps my stress considerably.

I guess what I'm trying to do is raise awareness: if you know the parent of a child who is on the spectrum or differently-abled in some way, and you also find that person over-protective, difficult, anxiety-ridden, or generally wearing Crabby Pants on a regular basis, please..... have a heart. The stress of autism elopement is incredible and it is constant. I spent years isolated at home in an effort to avoid it, and still do when I'm not up for the anxiety being in public with my boy causes me. And I'm one of the luckier ones.