Summertime Rules

There are quite a few summer lists out there, most of which are geared towards neurotypical children with two parents living in homes with more than one room.

Needless to say these lists don’t work for us.

So after multiple meetings, discussions, and practice runs, here are our Summertime Rules:

The Givens.

Have you…

__ Gotten dressed with clean U’s?
__ Walked the dog?
__ Made your bed?
__ Brushed your teeth?
__ Combed your hair?
__ Washed your face/applied deodorant?
__ Had a complete breakfast?

The Creatives.

40 minutes of work earns 20 minutes of free time.
All of these need to be done in a day but you decide how & in what order!

20 minutes of creative time (coloring, programing, writing, ?)
20 minutes of reading (remember your “reading bank*!”)
20 minutes (each) Math, Grammar, programming, Spanish (10 minutes 2x a day), nature/science discovery.
20 minutes of outside time.
+ Chores as assigned.

Does Your Child Have Special Needs?

Another summer, another camp form to fill out. Every year I feel the same feelings churn up, an unsettling sensation of annoyance mixed with terror.

Having a “twice-exceptional child” often means trying to find a line between acknowledging differences and not letting diagnosis be the final say on what is expected. This means that when the question gets asked, “Are there any medical issues which require special attention” it’s like hitting an invisible wall at a fast clip. I’m not quite running, but moving quickly because that’s the only way to keep up with my kid, you might think,  I knew the wall was up there somewhere but I sure as hell didn’t have time to slow down and look for it.

I figured I’d run into it eventually.

I’m sending Ducky to what looks like a dream summer program. (At least for STEM oriented children!) I was filling out the requisite “Health and Safety” form and there it was: The Question.

Require special attention….

I started to write… and couldn’t stop. This is the letter I wish I’d sent to every teacher, instructor, mentor, camp leader, and tutor.

****

Hello,

I’ve been asked to provide you with information about my son as to whether or not he requires any special attention. I have trouble with this request because we don’t focus on his diagnosis, we focus on capabilities.  Rather than labelling, I would implore with you to meet him first. 99% of all his teachers, tutors, & mentors have said, “I know you said he’s [__]. But he sure doesn’t seem like [___]” However, Murphy’s law being what it is, the one time I sent him someplace and decided not to mention it, there were problems. So, I’ll make you a deal. I’ll tell you what’s up with my kid and you Presume Competence. Good? Good.

Ducky is very excitable. The more he loves something the more verbal he becomes. He will be your chatterbox, excited, and hyper. He can also keep easily overwhelmed. This is due his being so-well-integrated-it-might-as-well-be-called ‘stealth mode’ autistic. Loud noises, too much combined stimuli, and feelings that come up when he doesn’t grasp a concept right away can be a problem.  The key to this is redirection, patience, & not clamping down on his behavior. Since this is a techie based camp I figure he’s going to be fine. But again, I fear if I don’t say anything something might happen.

Ducky can also get anxious. What about? Looking or acting “different.” A huge part of why I don’t think you’re going to notice anything is because he doesn’t want you to. Or anyone else for that matter. He downright white-knuckles through situations when trying to fit in. That can lead to his getting a “stomach ache” which is how his anxiety usually manifests. Or he comes home to me and has a meltdown in a safe space so he can go face people the next day. Takes a lot of will to make it that long. He’s strong that way.
Okay, the big bad scary words now: He is on medication for epilepsy & bi-polar. He always has a week’s supply on him in case of some sort of major disaster and they are given in the evenings. Since he is only doing day and not overnight camp, the medications will not be anyone’s responsibility outside of our family.  These are managed health issues that I mention only because I feel I have to. Just in case.

I hate writing letters like this. It makes my fantastic kid sound like a walking ball of “problems” and he really isn’t. Please don’t look for these things. Look for his smarts, his sense of humor, his outlook on life, his incredible observational skills, and his general coolness. He loves Doctor Who, My Little Pony, Minecraft, and nearly every vlogger on YouTube who screams profanities while playing various games. (He will NOT emulate them in your space, I promise. He doesn’t cuss in spite of having been given permission to do so. Probably because I do. Like a sailor. One in the home is enough.)

Anyway…

I’ve written a small novel as I’m often wont to do. I always say, “Why use one word when you can make twenty sound so freakin’ cool?”

I hope you will take this in the spirit it’s intended of a sort of begrudging, “I know I should tell you all this but it’s hard therefore I’m going to try to make it interesting and humorous because hopefully you will really hear me.”

If you have any questions, concerns, or need to find out more about my exceptional, wonderful, and brilliant boy, please feel free to call, text, email, or give me a shoutout. I’ll be at my computer, writing. (It’s kinda what I do.)

****

I ended up sending in a simple two line paragraph: “Ducky can get overwhelmed easily and might begin to feel anxious. If he complains of a stomach ache, he likely needs a quick break or go talk to the nurse. “

Sometimes it’s easier to not say it all. Or perhaps just less scary.

Scary Day

Shortly after we snapped the pic above, we were assaulted by a local mentally ill woman. We had gone to a local beach to pack up the rig for our next leg of the journey. I had parked at this same beach a couple of times before finding it a good spot to use. The waves and fresh air seemed to aid in the bizarrely exact process of figuring out just where that last can of dog food is going to fit.

After walking the dog and exploring the beach we had returned and were stacking boxes next to the side doors. The back doors of were also open with the step stool set between making getting in and out much easier.

I had been concerned that we might block traffic since the doors and stool did stick out a bit. An inexperienced driver in a big vehicle might have a problem so I was aware and listening for big engines, or even a “hello” yell.

Instead I heard the sound of our sturdy metal and wood stool being hurled across the parking lot.  A torrent of verbal abuse came in accompaniment. My thoughts of this being a case of road rage swiftly faded as the rant became so vile and profanity laden I was dumbstruck for a moment.

Lord knows I cuss but this was something entirely different.

Refocusing on just what the hell was happening, (this was only the first 3 seconds or so,) I looked for the source of the ruckus and found a deeply weather-beaten face contorted into a roaring maw. Whatever monsters this woman was seeing in place of us filled her with more anger than one body could hold. The wrath oozed from her pores and nearly had a scent. It was horrific to witness.

One of my personal mottos is; I fight well but I don’t fight crazy. Had she simply been an angry driver, freaking out that I was blocking the way. I would likely have been able to handle it. The look on her face told me immediately that there was no recourse. None of the three D’s were going to work here. (Deescalate, Defuse, Defend.) There was nobody present to parley with; the part that was running things only saw demons.

Realizing that I was dealing with stone cold nuts,  I ordered Ducky to get in the van, call 911 & lock the doors. This came out something like, “In NOW, Call 911, lock doors, GO.”

I blocked her bodily as she was working her way around me to get to him. She was talking to him in a wheedling tone, “Oh no honey you don’t have to do that…” I tried to make eye contact and give her the back off vibe but there was nothing I could make eye contact with. I felt the presence of danger and realized this was a fight I couldn’t win.

About ten to fifteen seconds had passed at this point. People were walking their dogs, gulls were keening, and fierce winds buffeted us. There were palm trees above us, outlined by famous SoCal blue sky and fluffy white clouds.

Surreal doesn’t begin to cover it.

After a bit of misdirection I hopped in the van, taking over the call and giving up on the fantasy of grabbing the rest of our things outside. I wanted my stool. I was obsessed with my stool. Then I saw her lunge. Okay, forget the stool.

Once I was in, she paced near the van like a tiger. After a few final declarations, “Yeah, you call the police, you call them, I AM THE POLICE!!” she moved a little further away. We could see her shredding papers, cackling and hooting while blessedly out of earshot.

Dispatch was a little slow, the area falls under harbor patrol jurisdiction and it took a little explaining that we were actually IN the van and couldn’t leave because our stuff was all over. “Do you want us to send someone out?” UM YEAH YA THINK? “Yes, please, that would be great.” Is what I recall actually saying.

After what seemed like forever I was able to open the doors and grab the rest of our things. Harbor Patrol eventually showed up and took down a report. They sounded like they knew who she was and that made me a little sad. I say eventually but it was likely only a few minutes. Time gets sticky when we’re under duress.

Ducky handled it like a trooper. While driving away, we talked about how mental illness works, and how it affects so many of us. We spoke about how being members of the neurodivergent community ourselves we sympathise and respect the sufferer while also understanding that there are boundaries that are not to be messed with. He said he wondered who or what she saw when she looked at us. We agreed it’s probably best we don’t know.

He didn’t fall apart until we got home.

Earlier tonight I got separate calls from both the Harbor Patrol & the local PD. The woman has been arrested and is in jail. They wanted to know if any of our property was damaged and I told them, no, our vehicle is a tank and the stepstool is hospital grade.

I got off the last call with a big sigh of relief.

Tomorrow we leave for San Simeon. We will finish packing in the morning, (bleah) get a later start than I want, (of course,) gripe and fight and argue and eventually get to our campsite.

Then we will make a fire. We will buy firewood for three days, get the pots and pans out, cook over the open flames and look at the stars. The waves will lull us to sleep, the fresh air will awaken our senses and we will talk quietly into the night.

*******

I know this is my first blog post in a while, there are many in the shoot, but I have had trouble producing. This one sort of burst forth. I feel it’s important to mention that in spite of my mocking tone, I don’t feel many degrees removed from those who suffer so horrifically from mental illness. As someone who has racked up enough frequent flyer miles in psych wards to fly to London, I often find myself bemused when I run into someone so out of control. I use a lot of humor to combat this. Our illness is sneaky and a liar and sometimes the only way to shame a liar is to tell the truth in mocking tone. I think that’s why so many comedians have such huge amounts of followers. They’re the only ones telling the truth these days.

 

 

 

Sunrise At Anza-Borrego

I set an alarm for just before sunrise. I’d envisioned us rolling out of the van, bundled in layers, setting up our folding chairs and then settling in for the display. I pictured gloved hands clasping hot drinks, cheeks red with cold, noses peeking out from scarves. However, before I could share my idea, Ducky pointed out we could simply throw open the side bay doors and take in the view from there.

Brilliant child.

Huddled in our sleeping bags, me up on the bench seat and Ducky on the floor with the dog, we watched as the sky began to gently branch out with faint pale yellows. The soft rays playfully wove themselves within dull grey clouds, transforming dull eggshell sky into wakeful robin blue.

There came a burst of gold. A bridal train of bold rose accompanied the surreal glow, symbolizing a marriage of light and shadow over the desert. An unequal union: the former was clearly dominant, pushing out the latter like a shrewish housewife.

These bright shades quickly faded to a dusky pink, tangerine and sunflower hues gentling into smoke and ivory. The atmosphere again settled to dun and the landscape faded to a winter palette of olive and brown. Not a hint remained of the show we had witnessed.

Ducky went back to sleep. I stayed awake, determined to get coffee using the last few gasps of my propane-fueled mini stove. There was much pleading. “Come on just get the water to a boil and then die!”

My instant coffee was prepared with semi-hot water, questionably spoiling milk, and buckets of raw sugar to mask the taste.

I sat at our table (what would turn out to be the second of three separate campsites during our stay,) and watched as a jackrabbit hopped by barely six feet away.

He paused in front of me, and we had a moment. “Are you a predator?” “Yes. But a fat, lazy, industrialized one.” He clearly considered me harmless and hopped away languorously.

After he moved out to sight, there came a moment here of near-perfect stillness. The only sound I could hear was from a bloke making his morning brew a few sites away. I glanced over and he nodded, clearly not interested in breaking the silence either.

This was a necessary hour.

I need nature as much as my daily medication. They are equal partners in the dance that helps me remain myself. I had been aching and soul-weary. Now I am refreshed and renewed. Would that all days could begin this way.

Tidepool day

I am watching Ducky hurl himself across rocks. He is trying to beat an incoming tide while on a quest to identify the large mass of scurrying creatures that are fleeing in his wake. I’m not sure if this behavior would be approved by naturalists of old, and I’m enjoying the mental image of men in full Victorian garb trying to keep up with my jeans-clad son.

There are sea stars the size of dinner plates in rich hues of maroon and orange. The former ones are hard to see nestled beneath their brightly colored siblings. The anemones here are also larger than life: touch-tank specimens have nothing on them. Their long stalks jut out from the rocks like tree trunks with leaves made of sticky, fern green tentacles. Sinuous strands cling gently to our explorative fingers when we reach into the cool saltwater. We are seeking connection amongst these elegant ambassadors of the sea.

I hear a yell and suddenly my boy is off like a shot, carrying our large hiking pole above his head like a spear. He is running to impale whatever beast has been sent from the depths of his extensive imagination. I wonder if other kids his age still play these kinds of games.

Times like these I have none of the doubts that often assail me about what we are doing. Homeschooling is so clearly the answer for a kid like this. How could I ever think otherwise?

I can no longer picture him sitting in a classroom, being beat down for his enthusiasm, told to “sit down, keep quiet, and learn.” I know that’s no good for him and am no longer sure that’s good for most children. This feels odd to admit because I used to be anti-homeschooling.

Ask the me of last year and I would have said it was completely ineffective way to educate. That it was populated by a community made of the privileged. I pictured nothing but anti-vaxxers, born again Christians, and confused hippies.

I loved being involved in our school. While not a full-on PTA, fundraising, show-up-to-every-event-volunteering parent, I did do my fair share and loved the community I had sort of found. It was a tenebrous experience for me due to the fact that many of the more involved parents were SAHM’s and I was a very busy single mother with then as yet undiagnosed disabilities.

Those disabilities affected my son from both directions. Affecting my ability to parent along with my genetics which handed him a stew-pot of mental health challenges.

The sky is turning coral with streaks of gold and dolphins play in the surf while Ducky tackles seaweed underfoot wearing slippery shoes. My alphabet-soup-of-labels child is safe within his “nature cocoon”- a space that nurtures him as well as I do. Perhaps better.

I am getting cold but don’t want to pull him back to camp, where the dog, campfire and dinner await. I want to watch him bounce about, his arms waving frantically when he calls me over to see the next great discovery.

This is homeschooling. The thought comes from nowhere, ephemeral and strange. Up until now I have only been identifying the classic work as school. English and math, grammar and Spanish. These are “school” in my mind.  Moments of running and playing on the beach might stretch into the area of “field trips” to me, but somehow not School. This, in spite of my constant complaint about how kids his age need to move more. That sitting in a classroom lined up like assembly line wasn’t going to teach them anything but how to conform. That they need to go outdoors, run, navigate pocket knives and trees, and bugs.

How did I let myself remain so divergent? I have no idea how I wasn’t able to see both side and suspect it has something to do with my overwhelming literalism. I am often hamstrung by that.

It’s time to go back to camp. I need to stoke the fire, wrestle the huge iron grate over it, go fetch water from the pipe, and attempt to make Mac’n’cheese. It’s pretty much all Ducky will eat these days which suits me fine. Our footprints in the sand are the only ones present and we comment on that while we make our way back. We hear a sound and freeze watching a rabbit hop into view, the brave little bunny refusing to move until the last of a fresh green snack is done.

The campsite is deserted. After cooking we settle in with nature books identifying birds, shells, and plants found during the day. The full moon rises over us, waves crash nearby, our fire is crackling and popping.

I take a deep breath and look around.

This is our school.

Safety Pin Nation

Ah, the safety pins.  I fear I am late to the party since this has been trending on Facebook for more than three weeks which means it’s likely doing its anticipated swan dive into online obscurity.

The last time I wore one of  these was back in the day when they were called “friendship pins.” We children all had bloody pinpricks on our fingertips from decorating them properly.  The beads were tiny and the bars sharp, after all. However, like many other innocent items, they are now shouldering the weight of representation. This creates an opportunity to become iconic:  

3036540-slide-s-4-the-untold-story-of-the-campaign-for-nuclear-cnd4
Alive and well after decades.

Or forgotten:

16c1Kony-2012.jpg
Pretty much dead on arrival.

Although the time for this discussion seems to be passing, I find myself still somewhat on the fence. When I first planned on writing about this, I asked my friends for their thoughts. I received a lot of passionate replies, most of which boiled down to two stances:

Some folks love them and feel that it’s a way to express solidarity. As one person stated, “it’s not about a trend or ‘look at me I’m part of this.’ For me it’s a silent protest to go along with my very vocal [ones.]”

Some folks hate them, claiming they are only out there to “make white people feel better” and calling them the latest in “slacktavism.”

One major media outlet was so bifurcated about the issue they had posts both praising and denouncing it literally from one day to the next.

janus
Editing by Janus.

My feelings were further complicated when I was at an event last week and was offered and encouraged to wear a one. When I declined, I got a vibe I really did not like. It was as if these total strangers suddenly felt they were on shaky ground with me.

What supportive, liberal, forward thinking “NWL*” would turn down such an item after all?

What I wanted to tell the people thrusting the pin at me was that I was still working through my feelings about these particular objects. That I initially loved the idea of them, but feared that they might lead to more harm than good.  I worried abusers could wear one to be put into an even better position to bully. That trendsters might wear one and not understand the responsibility that came with it. That someone with limited abilities/spoons might put one on and find themselves a target.

Instead, I walked away feeling confused and thrown. I was at a convention and was rushing off to the next shiny and really didn’t have time to reflect. I did however observe and mentally record my thoughts for the rest of the weekend.

Seeing these bright slivers of metal on the breasts of people I know well absolutely warmed my heart. The ones who clearly recognize what it means to put a pin on. The ones who understand the import of what they are doing. The ones who know what possible actions they are offering to undertake should push come to shove.

The strangers I saw wearing them left me with the impression I have of ALL strangers. “I will wait and see what you bring to the space we are in before thinking anything else about you.” The careful neutrality of my reaction taught me a lot about how these might not be generating the intended space that is wished for.

It seems like this is one of the many causes of the month that seem to germinate in the liberal world. They are birthed, trend for a bit, fade away, and then there is a new way to declare oneself an ally.

Personally, I feel it’s best to simply BE an ally, to the best of one’s ability, quietly, without fanfare, one day at a time.

That’s just me.

After much self reflection, the thought of wearing one myself is out. I don’t want someone judging me by whether or not I wear a pin. I want them to judge me by my actions. If I see someone in trouble I will speak up, step in, shout out, etc. if I am unable to do any of these things, I will still do what I can.

I do miss friendship pins though. Maybe I’ll buy some beads and risk pinpricks again. Instead of a plain pin, I will decorate them in rainbow hues and favorite colors and give them away to my friends. In doing so I’ll be letting them know I honor them, that I support them, and yes, that given an opportunity will stand in front of them to protect them from harm.

They are my people after all.

*Nice White Lady- often applied to me, not how I self-identify.

On Christmas

The holidays used to infuse me with joy, cheer, and bliss. I would decorate my home making sure to have scents, sweets, and sights all carefully balanced around the season.

This will be our first holiday in the rig, and though I celebrate our vagabond life, it’s times like this one can feel put out in the cold. Not having a home wasn’t really a choice and though we’ve adapted with enthusiasm, it feels strange to be in such a different space.

Perhaps because I no longer identify with the religious and spiritual aspects of the season it’s a bit of a double whammy- having both home and childlike beliefs absent creates new open space which isn’t necessarily bad, but isn’t entirely comfortable either.

I have always believed in seeking light in dark times and right now it feels hard to do so.

I am just not feeling it this year. Every time I see Christmas lights it’s a shock to my system, and part of me goes, “Oh yes, that.” They do not bring cheer, nor dread, nor any of the past feelings that I have experienced. I am just… neutral.

I truly just want -and plan to- go back to a place where we have no reception, a roaring fire, and the sounds of the waves.  A time of stillness and quiet is what my soul is craving. Not the hustle-bustle of crazy Christmas shoppers, the rather overwhelming sights and sounds that feel like they are pounding their way into my skull, and absent the seemingly overwhelming demands of the season.

The only thing I am looking forward to is it all being over. The lights put away and stored, the trees no longer glimmering out of windows, the carols silenced, and the merchandising done. I am feeling quite Grinch-ish it seems.

For Ducky’s sake I’m not being a complete grump. The rig is being decorated. We have decals and lights and I am in the process of finding the world’s smallest tree. (I’m open to suggestions here.)

I am excited that the small amount of room available has cut through the “gimmies” that past years have brought on. Ducky’s understanding of our new life has led to his making only one small request. This hits me as both lovely and unusual; it’s like chewing on a new food and not being sure if I like it yet. My only regret is that there are so many things I would like to buy for others; I truly love giving gifts and very much miss being able to do so.

I know that I am not alone in struggling through the winter. I have always said that the reason there are so many celebrations that focus on light is due to the fact that we need that in the season of short days and long nights.

Being out in the rig is good because it forces the maximum hours of sunlight the day has to offer- there is no sleeping in when the sun beckons.

So, I will write to you from there and let you know about the sound of the birds, the smell of the ocean, and the crackling of the fire. The wind will blow through the trees. We will likely see woodrats and deer, maybe a bobcat or two, and definitely hawks. We also plan to go see the Elephant seals who are pupping and battling right now.

We will come to the end of the year celebrating the glory of nature and find our light there. That doesn’t sound too bad, come to think of it.