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A Personal War (in pieces) 

10 Mar

I’m not usually a novelty coffee mug person but I saw this when I was running errands last Friday night.

 

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It’s a blue bunny (like my bunny girl, Otis), I say “hop to it” frequently to kid and coparent, and the glasses and bowtie reminded me of something, but that memory glubglubbed just below the surface…a few days later I learned an old friend had passed…

And I realized that was who this mug was bringing to the surface.  The memories followed and I was in that high school hallway again and Mr. Fleck was telling him I would be missing the end of my senior year, specifically finals. He told him it was because I was sick and would be in the hospital. Mr. Pryor cried. He cried, for me. I had not cried yet, because I had not been alone and safe enough and so much was unknown. But he cried. His compassion and his empathy for the process I was just beginning is an overwhelming, emotional memory. I am in the bookstore on Greenwich Avenue, a year and a half later, after I have crashed and burned through Kubler-Ross, picked my self up with M. Scott Peck, and dusted myself off with nourishing Bernie Siegel.  He is happy to see me. I had been feeling rather ineffective and invisible and was teetering on the edge of a full blown existential crisis. I joke with him about putting barbed wire around the literature section and asking seekers of lit a few questions to determine if I would bestow upon them the precious volumes or if I would provide the corresponding Cliff Notes (it was summertime and even parents would come in to purchase the school required summer reading for their kids and most of them opted for the Cliff Notes over the full books). The next week another adored teacher from school came in. After that,  I would see both of them, frequently, as they always stopped in to say hello.

After a year and a half of working at the bookstore, living at home, and indulging in a motley assortment of night courses at SUNY Purchase, I lept from the nest a second time and headed to Boston intending to pursue a degree and training in cinematography & camerawork.

Septic shock took me out of this body and mind a few months later, and when I was out of the coma and done with surgery, I learned to sit up, stand, and walk again. I learned to sit up and hold things in my hand. I held a spoon. A pencil. My Filofax.

My Filofax.

For me the organizer was a diligent effort toward a resolution for the new year,  to stop storing the details of college and work, all cluttered, in my brain. The black rubbery cover held my only memories, and as it was a newly started calendar and address book(it was only 2.5 weeks into January) it contained little.  I didn’t recognize any names, but I started making phone calls because I was on a metric shit-ton of IV morphine. (Looking back, if I had not opened those pages and started dialing, out of a super-stoned, toddlerish curiosity, my son would not exist today, as his dad was under the C tab, and I was going alphabetically  (but that is another story to share later).)

Some things, some people, were absent from my organizer, and ceased to exist in my sunshiny, spotless world.

Mr. Pryor. Mr. Vaught. Dr. Pavlica. Mr. Montgomery. Ms. Becker.

Until a friend told me of Dr. Pavlica’s passing. And then a few years later, with the magic of Facebook, the memory of Mont was returned, alive and well and exploring Greece with his wife. Then Mr. Vaught passed last year and that news returned him, to me.

Then this week, when I sipped my tea from my bowtied, spectacled blue bunny mug and read on Facebook that Mr. Pryor had passed away.

 
Mr. Pryor.

 
And there I was, near the start of this post, in the hallway, seeing my teacher, who I would call friend, crying for me and my broken pancreas.

 

That is the raw, shitty deal of amnesia.

I’d be more ok with not recalling the texture of my desk,  and the phenolic odor of lab tables with hints of metal chair feet scraped against linoleum , the temperature of the air, the light through the tree shaded windows of the first floor science room, the smell of pencil shavings and warm, freshly exfoliated eraser crumbs, the temperature and the sound as my hand squorsquishes into a forgotten apple in my overloaded backpack.

I could lose that stuff and not mind.

I do not feel as generous about losing whole people.

I am not comfortable with misplacing entire friends, formative experiences, or the multisensory snapshots of spaces in which my life happened.

The endless gift of amnesia is that memories are reconnected and returned erratically and surprisingly. Even the memories rife with terror and pain have value now. Focusing on the return of objective memories is almost like fleshing out a visual, spatial, olfactory timeline and I permit myself to only dive far enough in – as though a bungee tether has me anchored in the present day- to view objective details enough that the Swamp of Sadness (that took took Artu and nearly swallowed Atreyu in Michael Ende’s The Neverending Story)  cannot drag me into the sulking, sucking, stinking, deadly muck. This is a hard-earned, and worthy, skill to master, as every recall hides an abundance of pressure switches.

I have learned that even the terrifying, painful, and heartbreakingly sad memories are treasures when they are returned to me, and not because I love me some psychological torture and relish the PTSD experience, but because I’ve weathered enough in 41 years to spot the tiniest speck of glitter in a fetid heap of the ripest rot. And each wee sparkle fans out dendrites, bringing other memories closer.

I realized, a couple of weeks ago, that I don’t need many of these memories (reminds me of Harry’s rant about Auld Lang Syne in “When Harry Met Sally…”

Harry [about Auld Lang Syne]:   What does this song mean? My whole life, I don’t know what this song means. I mean, ‘Should old acquaintance be forgot’? Does that mean that we should forget old acquaintances, or does it mean if we happened to forget them, we should remember them, which is not possible because we already forgot?

Sally:    Well, maybe it just means that we should remember that we forgot them or something. Anyway, it’s about old friends.)

I don’t need them.

If I can’t remember them, I can only miss the idea of them (again, from “When Harry Met Sally…”:  Harry Burns: Maybe I only miss the *idea* of Helen… No, I miss the whole Helen.) but these content-less hunts of time, occassionally spotted with foggy islands of indeterminate terrain and potentially combative or predatory or friendly fauna hidden by strangling vines, stinging nettle, poison ivy, and heady, delicate gardenia, hold importance to me and that curiosity is not decreased by my lust for information and tireless enthusiasm for connecting ideas.

I recognize my miss-filed memories are important, to me, but I newly recognize that I cannot mourn their absence.  I am developing a more organic appreciation that most keepers of standard-issue (non-autistic, non-synesthetic) brains, who have not weathered two neurologically symptomatic endocrine tumors, do not remember every environmental, sensory, qualitative detail the way I do.

So I can relax now and not chomp at the bit quite so hard when it comes to the reclamation of every moment, every detail, every memory.

I am learning to curate my mind, my memories, my world while carefully maintaining integrity and feeding my hunger for personal objectivity through truth, facts.

It is through this (still very intentional, deliberate) curating and objectivity that I’m learning to express the more subjective and more primal parts of me (how I was trained to ignore those things is another story, for another time).

 

Rest in Peace, Mr. Pryor, and thank you. I’m sorry I misplaced you for so long and missed our friendship. You are remembered for your compassion, kindness, and your delightful wit and biting sarcasm. I’m glad I found you again.

xo,

 

Rebecca I. M.

Feeling Snappy

1 Mar

Do you remember the film “Crazy People”, in which Dudley Moore’s character brings refreshing truth to advertising?  It’s hilarious.

My internal editor left me a post-it about needing a break from trying to keep up with the pace of my brain and the demand by my heart and soul, in any conversation, any debate, to “first, do no harm”.

So here’s the first in a series dealing with issues we face in the disability and the parenting kids with disabilities communities.

Because I’m done listening to assholes trumpet on and on, wailing about political correctness, as though the very concept of civility, of being aware and respectful of differences exists for no other reason than to annoy them.

And I’ve had enough of the shit sandwiches we have been expected to eat for far too long.

More of our experience with the r-word.

Take the Pledge.   stw-un-dated-dark

Valentine’s Day

14 Feb

(the bottom one is the lesser or two weevils) 
Hello Friends,

I wanted to wish you all a Happy Valentine’s Day.

Oh, stop your groaning and eye rolling.

I love Valentine’s Day.  I love the simple, bold graphic of a bright red heart,  and the funny visual of a chunky baby armed with the sort of gear that could fell a sizable forest critter. But I’m not an obvious die hard romantic (I am, though, a Die Hard romantic.  Seriously. Cue the film and I get the warm fuzzies and tingles all over.). 

I suspect I do have a romantic side. Lust and love,  and execution of the two (take that as you wish)  I am familiar with,  but just not terribly familiar with the before and in between stuff. I have been in a legally binding relationship for 17 years (OK, so maybe I’m having a little bit of bitterness) and got to that legally binding bit after of few years of 80’s sitcom character will they-won’t they lust and one good summer which ended up with him in LA and me on the east coast before things moved forward from there).

For ages I thought typical Valentine’s Day behavior was to be bitter. All the cool,  funny girls seem to rock the bitterness.  I was the cool girl hanging out with the guys (until I married one them) so to try to fit in,  I learned to drink them all under the table and to not seem like I had defected from the ranks of the enemy or,  even worse,  might be a double agent of some sort. 


When I dropped my son off this morning,  I noticed that the only people who seem to get genuinely excited about Valentine’s Day (other than that one super enthusiastic teacher or coworker who shows up completely encased in heart themed paraphernalia)   past elementary school are the popular girls of middle school, and while I remember them from my childhood and remember feeling left out of all of that social stuff, I also feel sad for them because they are mere millimeters away from the fall off the cliff, to join the rest of us bitter, sarcastic beasties. But lately I have started to suspect that I am just a bitter,  sarcastic beastie as yet another mask,  to blend in,  so that nobody finds out the embarrassing truth about me.  I think I may be a romantic and the kind of gleefully optimistic being that keeps going to pet the bear,  even though at this point it has left me only bloody stumps with which to caress it. 

I remember spending hours, over days, making Valentine’s cards from scratch for every classmate, all of my teachers, Joan The Bus Driver, the kids on the school bus, friends who were in different classrooms (though I was a Valentine ninja handing those out as I was terrified of making anyone feel left out. I always had a few extra, just in case I was caught. I had the whole thing covered.) , my Popi (pronounced like “Poppy”. My mom is German and spelled it Popi when I was little, so when I think of him, I think of him as “Popi” because of the whole autism-synesthesia-visual thinking gift basket I am blessed with), my dad (pronounced the usual way)… Even Bruno (my first dog), Penny (my second dog and best friend through the rough tween and teen years), and Pogo and Yellow (my cats).  I even made Valentine’s for my dolls (and gave them Christmas presents.  Oh shush, we lived in the woods without other kids nearby and I am an only child.  It was “give gifts to my toys” or “become the unibomber”. I think I did ok in my choice.

My mom would come up with an idea for the cards I would make, each year. She would gather the supplies, make a prototype, and then stand over me clucking her tongue on the roof of her mouth and hissing to correct anything so much as a hairline shift in the placement and gluing (or inappropriate amount of glue), chain smoking, and eating herring in cream sauce right out of the jar. To be fair, the bit about right out of the jar is highly unlikely.  Everything was very proper growing up, and she would be mortified if I thought she ever consumed anything right out of the jar, without properly plating it (using a specialized dish and utensil made only for serving and consuming the jarred variety of herring in cream sauce).  I just remember the smell of pickled fish when I think about it so there was herring in cream sauce (not sardines. That has a distinct odor, in my memories. Again, synesthesia meets a multisensory autobiographical memory and means memories I have access to are so complete I can feel the air, smell things, taste things, sense temperature, feel and see the quality of the light. It’s a gift. It’s a curse. I’ll write about it sometime in the near future.).

There was never any glitter.  Glitter was too messy. Paints were not often used for the same reason.  I found a video from my 6th grade year (I was 11 so it was 1986) and I wanted to do very 1980’s themed “splatter paint”.  You can hear the pain and anxiety in her voice as I flicked and dashed thin ribbons and commas of easter egg dye over the hard boiled white forms, in the kitchen sink, surrounded by paper towels and plastic.  She feared messy.  My dad feared messy. I still am a hands on, make a mess and worry about it later person.  They really should find a way to test for that stuff at birth.  Yeah, I know it skips a generation in most biologically related families, but it would be nifty to give potential parents turning to adoption at least that convenience/nicety.

The anticipation of making the cards was always a rush of crisp air and cotton candy (a tart strawberry with a bare hint of vanilla sugar and a drop of sweet cream).  The actual making of them was always a reminder I was not as good as she was, and I never would be (I got over that. But it took decades to be me), but I so looked up to her.  I thought she was perfection (yes, even with the clucking of the tongue, the chain smoking, the endless need to control all she perceived as her domain, and even the copper and warm iron, briny fishiness of the herring in cream).

Then would come the day of reckoning. Valentine’s Day.

I would actually skip down the hall to breakfast, that morning.  Breakfast was not any different than usual, though there would be a small, thoughtful gift and a card from my mom and dad (that was always a surprise to my dad, as were Christmas gifts. I still enjoy watching my dad’s face as Alex opens things because his reaction has more childlike glee than Alex’s more reserved response (Alex needs time to process everything. It doesn’t mean he’s not happy or grateful or excited, he just needs to process that so he can express it.).  This was an era long before Pinterest, so no heartshaped waffles or pancakes.  (I usually had a glass of orange juice and cereal mixed with yogurt…I was particularly fond of Kellogg’s Sugar Frosted Flakes (that was before they dropped the Sugar from their name) mixed with applesauce.)

I would skip and hop down the long driveway with my mom, to the bus stop.  She always dressed me like I was her personal doll.  That meant that the other kids wore jeans (dungarees!) and sweatshirts or tee shirts and sneakers.  I went to school in a skirt or dress, stockings (OMFG. I still can’t cope with anything acrylic knit. Wool doesn’t bug me as much as acrylic knit. GAH. I’m itchy. I have to go shower just thinking about it, to neutralize the tactile memory.  Be right back.)

Where was I?  Oh.  I would wear a blouse or turtleneck (the memory of squeezing my Brobdingnagian squash through one of those nearly sets me back to my own birth, albeit without the magnificent neonate form which is built for that sort of journey). Sometimes I would wear a cardigan.  And mary janes, saddle shoes, or sandals (I remember requesting penny loafers at some point and I think that was when she started to realize the whole “choose your battles” concept which greatly increases the likelihood of surviving adolescence and the transition and differentiation into adulthood, for all parties involved, or in earshot of, those delightful moments).  

On Valentine’s Day, though, she would make sure I had red or a heart on me somewhere, even if it was my hair clips.

I’d dance around at the bus stop, just giddy to give everyone I knew the little cards to let them know that they matter.  It never occurred to me to not make them for the kids who were horrid and bullied me relentlessly. Valentine’s Day was, to me, the day of love and acknowledging the presence and impact of these people in my life.  I was aware of that from the start.

And in 4th grade (at C.E.T. in Croton, NY.  I had Mrs. Lebowitz, or “Lebo” (pronounced “LEE-BO”).) I found out that I was one of the only ones left who still felt this. 

Lebo let us go, one at a time, to the big bank of cubbies, to play “mailman” and distribute our hearts and cards.  I was in the middle of the alphabet (“M”), and I dug my nails into the wood table top and my toes were curled up that those dreadful acrylic cableknit stockings felt like they were going to leave cable knit patterned bloody slices on the fleshy, pink front tips of my toesies.  
When it was my turn, I skipped along the stacked row of cubbies.  I didn’t just make enough Valentine’s for everyone, I wrote a nice message in the card and put their name on the actual card and the envelope.  It just didn’t occur to me to alphabetize them, but I enjoyed the sorting (I still get all zen when I sort or alphabetize stuff. I believe working at bookstores and volunteering to reshelve books at libraries during college kept me sane as it was a pause in the sensory overload).  Each mailbox (I insisted on referring to them as mailboxes, confusing classmates and teachers alike, throughout my years in classrooms which had cubbies) got a card, with a chocolate heart carefully glued to the front.  That year, my mom had chosen chocolate hearts, snug in the semi-shiny red foil which highlighted the beveling and the scalloped edges.  They were not supermarket or card store chocolates.  They were good chocolates.  I was careful to only take the cards, with chocolates affixed, from the red basket my mom had put them in for transport to school, only when I was squatting low at the target cubby or already on tip toes for the higher cubbies because I wanted them to be perfect and not risk melting the curve of one of the sausagey finger tips of my chubby hands into the surface.  I slid the last card and chocolate into the recipient’s mailbox and I stood back, red carrying basket knocking against my knee.  I surveyed my work and deemed it complete.  I smiled, turned on my heels, rocked on them with happy toes pointing up and went back to my seat just electric with the anticipation of my classmates seeing the effort I made and how much I cared for each one (even the meanies).

Near the end of the school day, we were allowed to attend to our own cubbies. I waited a few moments as classmates retrieved the sweet sentiments and flood of red, pink, and white paper so carefully, kindly, and generously prepared by other classmates.  I wanted to see one of their faces, any one of their faces, as they opened the Valentine’s I had made. I rocked back and forth on my feet and stood with my arms stiffly sloped at my sides, fingers splayed stiff.  I was amped up. (I still do that with my arms and hands, btw. It’s an overwhelmed with happiness sort of expression.) 

Classmates shoved the paper bits into brown paper bags, provided by Lebo (I smell buttery-  real butter- popcorn and hot paper when I remember this as earlier that year we were rewarded with a movie, in the chorus/music room, and popcorn served in similar bags), shoved them into their bags, and got ready to head to the buses.  A couple of the girls chatted excitedly, squeaking like rubber sneaker soles on linoleum (or that could have been rubber sneaker soles on linoleum, or both).  I felt a little deflated but then remembered that they would see them at home and it would make them feel happy and cared about, by me, even when they weren’t at school which in 4th grade is a pretty big idea.  Some kids probably had yelly parents who screamed at each other through closed and open doors for hours every night too and maybe they would look at the card I made when they were feeling scared and like adults were giants who could crush them like a bug with a simple misstep, the way I did.  And looking at the card would make them feel not alone.  And that made me happy.

The crowd dwindled to a few kids trying to shove their lunchboxes in their backpacks, without the spatial reasoning to see it wasn’t going to work (and I had been told not to advise my fellow classmates about such things, by more than one of my teachers between kindergarten and Lebo’s classroom.) 

I assumed the cards in my cubby had somehow been sandwiched between the floor of my cubby and my vinyl Annie lunchbox.  I lifted the lunchbox carefully, as pulling it toward me might send the precious bits of paper to the floor and I could see how one might fall from the floor of my cubby, propelled by the movement and friction of my Annie lunchbox, and then spin around on the floor and disappear into that tiniest of gaps between the bottom of the cubby casework and the linoleum floor (a single mm, if that much).

My lunchbox carefully extracted, I looked carefully at the wood floor of my mailbox/cubby. My eyes got very big.  As though opening them as wide as humanly possible would make the Valentine’s that did not exist for me suddenly visible.

The bus ride home was the usual.  Paul called me names and teased me about my body (I was not fat, but I wasn’t a skinny rail of a kid and I had a chubby face and my mom dressed me up for school every day so I was the most obvious target to fit his needs).  Jamie turned around in his seat and stared at Kristie and me, while he mouthed the top edge of the seatback, like he always did and we always hated because sucking on parts of the bus was gross, even without thinking about the germs.

Mom was waiting for me, with Penny, at the bottom of the driveway.  I wished Joan The Bus Driver a Happy Valentine’s Day and carefully stepped off the bus after my mom took the red basket from my hands.

The bus pulled away and I waved until it wound to the left, around the curve that would take it first past the main building of Teatown and then past the driveway heading up to Mrs. Gilbert’s house, The Croft, before turning left and heading back toward the Croton Dam and their bus driver homes as I thought they drove the busses all of the time, not just as a job.  I closed my eyes and clenched my teeth and held my breath thinking about the bridge part of the dam and the metal and knowing about metal and water having rust babies and that left turn at the end that seemed impossible even in my mom’s little VW Dasher Diesel, and always felt like the bus was nearly cantilevered over the too tall steps of the spillway.  But still I waved them on,  every muscle primed and stiff. 

I turned to look at my mom and her face fell, then sparked back up as she said, “are your valentines in your rucksack?”

No.

“Did you forget them at school then?”

No.

“Did you not have time to exchange them today?”

No. That wasn’t it.

She was grinding her teeth so hard it felt like coarse sandpaper on my bones.

I simply said, “there weren’t any for me”.

Why was she mad at me? I quickly assumed I was bad or did something wrong to make the other children exclude me from that integral part of the Valentine’s Day experience. I knew it.  I just could not figure out what I had done wrong but she was so furious I knew I had messed up. Maybe I was too happy, to excited.  Maybe I cared about them but… But I had been happy to make them and give them out, before I had any idea how they would respond (though I had assumed they would be happy and comforted by my offerings). So I wanted to be happy again.  When we got to the house and I changed into play clothes, I gave my mom her Valentine.  Her eyes and skin were raw and wet.  I told her I was sorry for not getting any Valentines.  I quietly asked her if we could not tell Daddy because I didn’t want to be the match on the powder keg he always was when he came home.

The thing is, I still relish making gifts and cards and giving them to people, and not always the people who I am close with but I often share these things with people who were just on my mind, or inspired me, or that randomly popped in my head, or as a trading of spirits, in kind, when they have shared a piece of their story with me.

When we were in first grade, Miss Kelly would sent the birthday kid to Mrs. Gillman’s room and the class would decide on a sentence that described the birthday kid and they would all practice their letters nice and neat on the paper with the blue solid and dotted lines and the little picture of a house on each line.  They would each draw a picture of the birthday kid and Miss Kelly would put the pictures and words on red construction paper, and have the pages comb bound by the Main Office ladies into a big book and then give it to the birthday kid.

My book said, “Becky has rosy cheeks. She is very generous.”  I was five.  I still try to keep it as my mantra.  Not the rosy cheeks bit, as that is still effortless as I’m generally a fairly pink being. The generous bit.  I cannot afford to be generous with money or goods at this particular station in my life, but I can be generous of my spirit. I try to do that. I try to take care of everyone and sometimes I will reach out to an old friend or classmate, just to check in on them.  Maybe that seems odd.  I often hesitate because I’m primed for rejection, thanks to starting life as an abandoned newborn.  I know I remember more than most,  but I wonder if even peripherally I held a speck of space somewhere on the undulating folds of Grey matter. 
It seems, to me, that most non-autistic people do not have the same peculiar acuity of memory which I am blessed (cursed. Really. Try sleeping when you get stuck in a multi-sensory, real time, unedited, immersive memory of a humdrum day 30 years ago.).  I’m beyond concern that I’m weird. I know I am.  I embrace it now and it took so very long to get here.  I just hope that those old friends and acquaintances don’t see me as anything but as that rosy cheeked, generous kid who just really wants to connect and connect the pieces.  I will admit there is more to my need/desire/curiosoty to reconnect with people from my past, relating to physical trauma, PTSD, and memory loss. To put it simply, I do get a bonus from reconnecting, in that it helps fix some of the busted wires keeping me from accessing memories from a large chunk of my life. So yeah, I’m 41.  I finally am ok with not being totally selfless all of the time.  But I hope people realize that I am still that nerdy little kid with the rosy cheeks and the big heart and if I have some of the frayed and busted wires soldered by reconnecting, then woohoo, but I don’t want anything except maybe some conversation, mutual respect, and to reopen the connections in the universe between us, because while we may seek nothing from others and they may not feel the need for us at a given point in time, life has a way of flying off the road instead of slowing for those scary left turns at the end of road which caps the Croton Dam. And I never got the Valentines.  And it hurt more that my mother was disappointed and angry than it did to not receive those Valentines from my classmates.

So what is the point of this epic traipsing down memory lane? 
 I wanted to share some of the things I have learned and not just that other kids can be total shits (as can their parents who don’t insist that they bring in a freaking card for every kid because INCLUSION MATTERS, even in this).

Before you can be good with anyone, you have to be good with yourself.

If you have friends, family members, kids, etc… who are single or are not swarmed by friends that does not mean they are miserable.  I remember from my childhood, and I see it now, with my mom and Alex, not realizing how lonely or excluded I really was or that I was basically a social freak compared to my peers until someone felt the need to ask me and make me think about it, or comment.  Engage your friends and family members. Encourage them to talk to you.  Being single (either romantically or platonically) is not a freaking disease that needs to be cured.   My second thought, after my son’s dad asked me to marry him (first thought being an enthusiastic “YES”), was that I might finally pass muster with my parents, one of which seemed fairly convinced I would never find someone to tolerate me even remotely (though she never has seen me, or anyone else, as an individual, we are all just extensions of her and pawns. It happens. No longer bitter as it’s just fact.).  WTF.  Someone loved me(and yes, tolerated me, though as I learned not as much as I thought as he manipulated all of me like so much clay until I was lost and didn’t even know me) to the point of proclaiming they wanted to spend the rest of their life actually with me (and not just vaguely adjacent, emotional neighbors) and my thought after “Yes” was that my parents might finally see me as worthy (I’m adopted. This seems to be a common theme in so many adult adoptees, though of course not all)… WTF!?  So seriously, help your loved ones connect with others but FFS, the emphasis should be on connecting with that loved one not on connecting them with others…Make sure they know they matter, even if they are single for any reason, or if they don’t have many friends.

FFS. Let people mourn. If you lose the love of your life in any way,  shape,  or form you need to mourn,  adapt as best as you can, before you can even breathe without giving it a fair amount of thought.  Let people mourn.  Give them support in tangible ways.  Don’t just say,  “let me know what you need”.  Feed them.  Help with logistics.  Be a shoulder for as long as they need.  There are no standards or time spans or “getting over it”.  Include them. Loss teaches you more than any win.  It changes everything. Be available but realize they have to do the work to learn who they now are. 

My son has many moments like my Valentine’s Day experience above, and my mom still needs to ask him if he has any friends and then tell him he just needs one good friend (well, that would me nice, but the kid has a million and one things he will happily talk about so can we not call out his friendship status in the middle of the awkward silence at dinner? That would be a good start)….

I tell him that some of us just take longer to find our tribe, and we don’t make friends easily (we are not horrible, we are autistic. We give off a “we are different” vibe, which is not as easily accepted in the animal kingdom (and oh yeah, middle school?  It’s the freaking jungle but with wifi and chromebooks).  I am still friends with people I have know since I was a toddler, school kid, awkward middle schooler who moved and struggled and wound up in three different schools- a different one each year of the joyous middle school experience… High school, college, adulthood… Our respective tribes should always be about quality, not quantity.

We can hope to find our place, our niche, our tribe, but it only happens organically.  Anything else and we bend into forms unrecognizable, and eventually that is revealed to our partners (of any sort) and everything falls apart.

Be yourself.

Remember that we are all works in progress.

You are not how many friends you have.  You are not your relationship status.

BE YOU. Be you first.

For those reading this who are smug marrieds (Thank you, Bridget Jones and Helen Fielding), for the love of Pete, your loved ones are not a bunch of blistery feet caused by ill fitting shoes.  Stop binding their feet to fit what you feel is best and happy and won’t cause further blistering (which only you can see because you are high on the smug married/smug partnered fumes).  
Remember that we cannot see another’s story if we only use our eyes and it takes a lifetime to truly listen to another person’s spirit.  That lifetime is whatever time you are connected in some way.  Our own stories are hard enough to decode, don’t assume anything about another’s ability or will or value. We can’t expect to know our own stories with the depth that there is never enough time for.  We cannot expect to know another person fully, in so much less time, but we can, through sharing distill a hint of a another and that is a rare treasure (and sometimes it’s a hard-won lesson that even a hint of anything can be far too much and too foul a thing to venture any closer).

So, if you are happy just making the damn valentines and handing them out, do it.  Do it year round.  If it makes you feel good. If you think it makes a difference. Do it. Tell people that they matter.

I have been to hell and back so many times that I my next trip is free.  Getting through that, teaching my kid to get through the shitty stuff, is painful (yeah, I know, that which doesn’t kill you, makes you stronger.  Go suck an egg with the platitudes.  I have enough strength. I have been through more than most and survived when nobody would bet on anything but failure or death.).  But the worst, the lowest, the darkest, the most desperate moments are when you wonder if you even exist.  When you wander around between your own two ears and feel a dismal and pathetic kinship with the tree which fell in the forest and you are pretty damn convinced that it made a sound but nobody gave a shit or even knew there were trees in the forest (see what I did there?)…It’s the worst. Someone, anyone, the universe at all giving some sort of sign that you matter, that you are real, even the smallest little millisecond of a twinkle in the world…That is what saves some of us from ourselves.

Last night I realized that my kid might not get a single Valentine from a friend, and then realized that I don’t know if he has anyone, his age, who he would call a friend and would bestow that title upon him, equally.

I didn’t cluck over his shoulder and make him assemble cards for his classmates, because I realize that they don’t do much of that in middle school, especially the boys.

We did buy a bunch of Starbucks gift cards for all of his teachers and aides.  Because it’s important that they know they matter to us.  I made sure that he knows he matters to me (I do that every single day).

And it’s putting our hearts, our souls out there, in those little ways, to say “you matter” to another being (to any other being, in any capacity), is what will save us all.

Happy Valentine’s Day, Friends.

You matter.  You matter to me.

 

xo,

B.

 P.S. I did mention mutual respect somewhere in the zillion words I posted…  I am not saying anyone should be in a strictly giver-taker,  fixed relationship with the balance askew in either direction.  I am saying that sometimes I have to do what makes me happy and ignore what others dictate as far as acceptable outcome.  As an autistic being,  I miss social cues and always have,  though I do have a background in communications,  so I understand the cues even though I may be delayed in picking them up or oblivious to them… I just want to be clear that we should be looking inward rather than to others to get a grasp on what we want and what works for us. 

 

P. P. S.  You know that not being bitter part I may have mentioned once of twice,  above…  It’s totally natural to be bitter and sarcastic when you are staring down a glass jar of citrus flavored hard candies trying to determine if the giver implied suck as an adjective or a verb.  

“That’s retarded!” or “What a retard!” or “Are you retarded?”

11 Feb

bullied.jpg



This is my son’s worksheet from after an incident at school today. It wasn’t the first incident. Today, though, they surrounded him and joined in and taunted him. It started because one student called him a retard.

This is not ok.

I realize many people still use the “r-word” casually and I realize many people use it and think it is ok if they use it because it was considered acceptable when we were growing up. It is not acceptable now. Please consider what you are saying when you are calling a friend “retarded” or “a retard” or calling their behavior “retarded” as in “that’s so retarded” or “you are such a retard“. You are saying (even if this meaning is unintentional) that people with developmental, cognitive, and physical (people assume far too much about cognition based on just a glance) impairments and disabilities are less than you, are less than “normal”.

Our community has fought, and continues to fight, just to live as others live and to have the same rights as Joe or Jane Average. We all have dealt with adversity, even the youngest in our ranks.

Do not add to the vitriol and mistreatment by using that word.

If you use it now, please stop. If you use it by accident… That happens, but think about the child or adult you are really hurting, and vow to never use that word again (and share this message. Please.). If you hear a child, your child, a nephew, niece, neighbor, etc… use the “r-word“, tell them what I am telling you here. Tell them it hurts. If you are a teacher or school administrator or support staff, please consider spreading awareness that this word is inappropriate and too many students are still aiming it at other children, and not always in a casual way.

Some of those children, being called retards or asked, “are you retarded?” on the playground, in the halls, in the cafeteria are children who have been fighting hard their entire life just to have a seat at the table and in many schools, inclusion means that the table has kids with disabilities.

If you think it’s not a big deal, ask those kids and ask their parents how they feel about it. Ask an adult with disabilities. If you don’t know any you feel comfortable asking then please ask me. It is a big deal.

I was called that dreadful word, as a child with developmental delays, and my son has been called that word daily, at school. My kid isn’t “normal” (which is a word we also don’t use in our home.). He’s better than that. His response to these lunchroom bullies is to explain to them why the r-word is not an acceptable word to use anymore. He is so much better, kinder, smarter than those nasty 8th grade boys. He would never call another child anything other than their first name, because he has been tormented and he knows that teasing and bullying is wrong. He is so much more mature than they are. He can’t fight back the way a developmentally average child would. So he explains. He tries to explain to these bigger kids why they are doing something wrong and mean. Which, of course, makes things worse, and magnifies his differences (which I see as such magnificent strengths) to these bullies. And the taunting increases. Where do you think these kids first heard the r-word? Probably at home, either from a parent or in a movie/on a tv show, and then they spread it around.

WE CAN STOP THIS.

Sticks and stones may break bones, but the reality is that words do so much damage, and until you have been at the receiving end of them, for a lifetime, it can be impossible to fathom the destruction they can cause.

Please share this and share this link: http://r-word.org/r-word-why-pledge.aspx#.Vr0azN-rTdQ

Please take the pledge and spread the message to family, friends, coworkers, classmates and ask them to move the message forward that the “r-word” is not acceptable in 2016.

Thank you.

xo,
Bek

Bunny Deux: Electric Bunnaloo

13 May

It took two weeks of caring for my wee baby bunny, Frankie, to realize a couple of things:


1.  I am a rabbit person. 


I love dogs. I tolerate cats (allergic to most, with the exception of Maine Coon Cats). I am obviously not a cat person (before anyone gets all knotty in the britches, I like cats if they belong to other people. I just don’t want felines of my own.)  I am surprised to find out that maybe I am not a dog person either.  I am a rabbit person.


2.  Baby rabbits have boundless energy.  I do not. 


3.  Having only my one kid (the human one) has been gnawing at me forever and as I have been closing in on forty it has been gnawing less idlly and more with the ferocity of a beaver on a dam mission or a wood chipper on a past it’s prime Christmas tree.


4.  No. 2 has helped emmensely in coming to reasonable terms with No. 3.



Still, No. 2 kept needling at me kind of in the way Frankie’s tiny baby bunny talons do as he climbs all over me like I’m the strategy board for his future takeover of everything that is and will be.  


I read up, like the diligent autodidact I am and came to realize that the guinea pigs were a gateway pet and now, to preserve sanity (mine) and improve the life of my newest little one, I would have to find a suitable, Lagomorph life partner for Frank.  Also, playtime with the piggies wasn’t cutting it (though it was adorable as there was a definite kinship and the piggies followed him around with the glee of toddlers after an older sibling, complete with adorable waddling and urinating during play) and as Frankie started physically eclipsing Oliver and Dave, the safety of the pigs was becoming a concern (guinea pigs are extra delicate when challenged by the strong hind quarters and boisterous boinging of a bunny). 


There were many considerations.  Most of them had much to do with avoiding the conception of a billion baby bunnies in my condo.  As I was planning on having Frank, and any additional rabbits, neutered/spayed, I decided another boy bunny would be the best partner for him, unless I could find a snipped cougar bunny and fast as he needed bunny companionship to help meet his energy.  


And then this showed up on Craigslist: 

  

  

There was a note on the listing saying that the last rabbits would have to be sold by 5pm or those baby bunnies would be heading for “Freezer Camp”.  The picture is of the blue Silver Fox buck/boy.  He was the same age as Frank. FREEZER CAMP. 


*gulp*


I knew I was in trouble.  I knew I, even though I am not a vegetarian, would not be able to withstand the burden of knowing this particular creature was killed because I didn’t take action.  (Don’t fret, herbivore friends, I battle with my own hypocritical thoughts and behaviors each and every time I slip on my shoes or raise a physician prescribed nibble of flesh to my lips. I do.)


I talked to my kid about it and read him the craigslist ad.  


“We need to go get that bunny, Mama.”


So we did.


We put Frank in his hamper, hopped in the car, and drove up to Port Charlotte to meet Otis.  


That’s when we learned that Frank is a really tiny, possibly dwarf, rabbit.


Otis is a meat rabbit.  READ:  very large.  Frank: 1.5lb  Otis: over 8lbs. (Frank has since grown quite a bit but is clearly the racing model to Otis’ utility/tank/steamroller body type). 



Here’s Otis, at home, the first week.

  


  



There is more to the whole Otis tale, but it just dawned on me that I have gone completely non-linear.  I think I failed to post anything about how I went to go get hay for the Guinea Pigs and there were baby bunnies and I put my hand in their enclosure and this little black and white bunny, who looked kind of like a Boston Terrier and a bit like a French Bulldog with bigger ears, immediately started licking my hand.  I asked to hold him. I did. And an hour later Frankie was settling into life at home and I was frantically reading everything about rabbits. 


Here’s baby Frank:  


  




And fast forward a couple of months…

  

Before you are pummeled by the irresistible cute of a baby bunny,  please please please do your research to prepare for their needs.  They are a joy and require very specific and constant, involved care.  One fantastic resource is the House Rabbit Society. 





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