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.

 

 

 

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.

Picture Day for Homeschoolers

I remember the stress picture day used to cause. The very notice used to send me into a flapping tizzy, often dealt with by my completely forgetting about it until the day before… or after. There were at least two years when Ducky went off to school in regular clothes. Ironically enough, those ended up being far better pictures than the ones where I freaked out over putting together a perfect outfit.

Today I went online and plugged in my ten minute reservation to show up in a town a few miles north. We will have pictures taken and posted online for family to peruse and purchase. That’s it. Sweet and simple. 

This is the best idea ever” I thought when I read the invite “Homeschoolers have picture days, who knew?”

We are still brand spanking new to this world of homeschooling, a world that I swore I would never set foot in. I was also, for the record, never going to be a single mom, never going to be a vagabond, never going to medicate my child, and was also never going to “go casual” (wearing nothing but tees and jeans.)

Yeah. You know what they say. I’m not going to say it. I’m just not.

*whisper from the crowd, “Never say never…”*

Sigh.

Teaching at home was something I felt I would not ever be able to do, “We can’t spend that much time together, we will kill each other.” “I can’t be his teacher, I dropped out in the fifth grade.” “I can’t teach math.” “I can’t teach English.” “I can’t afford it.” “I don’t have time.” “I don’t have the self-discipline.” “I am way too scared I will fail him.”

Many of these fears are still present. However, financial woes are greatly lessened when one only needs pay for gas and food. I am also now afforded the luxury of time and therefore am able to give more of myself. The school we have enrolled in helps us get supplies with the state allotted amount of funding Ducky’s entitled to. A brick and mortar school would have claimed these funds and then pooled them as resources for all their students. Now, with the approximately $2200 hundred we get annually I am able to personally tailor programs and curriculum to suit his exact needs.

Our journey seems much brighter than before. For all the times I’ve had to say “No” to points of interest, I can now say “Yes.” Field trips are covered, as are music lessons, sports, summer camps and of course textbooks, online programs, and science kits.

I am in heaven.

Today Ducky has worked on Math, Spanish, Language Arts, & is about to go do “P.E.” with me (walking along the beach for at least 5,000 steps. We will likely play PokemonGo and discuss the pros and cons of desalination for drought conditions. ) I have gone over his draft for his English report (he will have to submit a report every week on anything from articles read online, to books, to field trips.) I am also searching for the best math textbook for sixth graders.

I think this is the most involved I’ve ever been in my child’s education. I have an honest to god syllabus! I have a daily schedule! I have 10,000 emails from the wonderful program we have selected and am about to curl up in the fetal position!

Okay, so it’s a little overwhelming too.

I am taking deep breaths.

I’m also contacting his teacher near daily- oh, yes, we get a teacher, did I mention? She is a rock star and I am giddy at the thought of having guidance from a degreed instructor. I am also slowly exploring which textbooks I will actually need vs. the ones that we want.

But first I am going to hit the van’s teeny tiny closet and pull out Ducky’s lone collared shirt. I will take him for a haircut this afternoon and maybe even let him get lightning bolt fades on the side. We will purchase gel, practice spikes (or perhaps even a fauxhawk,) and talk about background colors.

After all, it is picture day on Friday.

Day 140

My parents living room floor looks like a packrat has strewn its nest across every square inch available. (So glad they are on their own road trip right now, up at Doc & Al’s because I’m pretty sure that we would be banned from ever visiting again.) My goal is to go through our accumulated junk, pack up our unnecessary summer clothing and prepare our Fall/Winter items. What I have discovered is that it is much harder for us to let go of all the little things we have collected over the past few months, even if we’ve never used them.

We have stickers, travel sized EVERYTHING, games, note cards, postcards that we intended to mail (but didn’t), swimwear, (including goggles,) small boxes that we have never opened (and are no longer sure what is in them,) what seems like 1400 packets of oatmeal, 28 t-shirts, (but only 4 pairs of shorts,) and about 100 “please just take this little thing I’m sure you have room for it” items from well-meaning friends and family.

I have a trash can on my left side, a box in front of me and a bag to my right. The trash can is the old-fashioned metal kind and everything that goes in makes a very satisfying “clang!” when I make a deposit. The box is for items we want to see again someday, but don’t need in the van. Or possibly ever. I’m not sure. The bag is for items that I’m quite-nearly-certain have homes in the rig, and if they don’t then I am bound and determined to make space for them. Somewhere.

After all the breakdowns from our summer journey (both ours and the van’s) our relationship with Asterix* feels a bit tenebrous- we love her and fear her at the same time. She is currently having a pedicure- her back brakes are being replaced by a local mobile mechanic. I have more or less accepted that she is a needy, high maintenance creature. Since I’ve been described many times as the same I suppose we pretty much deserve each other.

In spite of our relationship issues, I can’t wait to take her back out. Ducky is well beyond ready and his impatience has turned to preadolescent sulkiness.

It’s time to get back out there.

I can’t wait to share with you all what we have learned during our break. We’ve connected with other #vanlife folk, each with their own diverse stories and wonderful advice. We have discovered that our choices are as homeschoolers are near limitless and that for all my fears, Ducky has opportunities to soar. When telling our tale, we hear the good that has come out of our adventures and realize how much grace and beauty came with the intensity.  Our lives have opened up in so many new and exciting ways it’s hard to encompass all of the wonder and joy.

Today we are chomping at the bit and are looking forward to our first campsite where we are assured stars, campfires, and falling asleep to the sound of crashing waves. Just a few more days now…

Yes.

 

Repairs & Nightmares

Badly shaken right now over a situation I’m still coming to grips with. Like many women who have been bullied, I find myself wondering if things went down exactly like I remember. The second guessing is erased however when I remember that I did not raise my voice, or yell, or scream.

The man I just dealt with did.

I can’t recall a time when an interaction with a business owner resulted in them shouting “get out, get out” (I can’t help but think of the Amityville horror -1979 of course,) and as much as I joke, I’m growing cold as I try to put all this down.

I made an appt. with SoCal RV Doctor in Lake Elsinore on Wednesday of last week explaining that I needed urgent appraisals before heading north. I was promised a quick same day look if I came in Friday morning at 8.

After arriving I had a comprehensive walk-through and felt like I was going to hear back by that afternoon. I called mid-afternoon checking on the status and was told, “we haven’t looked at it yet, we won’t have time today.”

Feeling resigned and frustrated, I agreed to leave my conversion van for the weekend after they promised to look at her “first thing Monday morning.” In my distraction I realized only after they had closed that I was short on my Ducky’s anti-seizure medication.

I showed up first thing Monday to get Ducky’s meds as well as to hopefully address what I was thinking of then as a “miscommunication.” After explaining to the woman staffing the front office why I was there and that it was urgent that I get into my rig (I was very clear what I was there for,) I was made to wait for nearly 20 minutes for someone to let me in to get his meds.

I tried to also deal with the miscommunication but the conversation was circular. My concerns were brushed off, and I felt unheard and very manipulated. I realized after taking Uber back that I likely should have taken the van and left, but was focused on getting back with the medication. I was also still willing to give them a last go due to a positive experience 5 months back with a quick turnaround on an installation of struts on my bench seat.  

Called Monday afternoon (yesterday) & was told “We are looking at it now!” Said they would call me back. They never did. Went in this morning to collect vehicle and leave taking a family member with me for moral support.

The owners meltdown began when I pointed out that if he had that many backed up customers (he had pointed at his folder system along the wall exhorting us to understand that “many of these people have been waiting weeks,”) then he should have said no to my request. He lost his temper saying, “Don’t tell me how to run my business.” I replied I hadn’t been but now that he went there my advice was to work on his C/S skills.

My aunt then addressed the owner as well. First she was trying to express the fact that she was trying to support local businesses. He cut her off. She then tried to further with her disappointment in what was happening. He cut her off.  Finally she said that she was considering contacting the BBB.

It was here that he really lost it.  His voice which had been steadily raising in volume and sarcasm with every interruption, now became a bellow, “so now you are threatening me!? Get out, get out!”

I’m actually relieved because I’d been walking away from previous conversations feeling confused. It’s so nice to know it wasn’t me.

I’ve never seen a businessperson conduct themselves so unprofessionally. I wish I’d checked Yelp first as there are plenty of warnings about this company. For my other #vanlife #rvlife #openroad folk: beware.