When the Universe Wants One's Attention

I was doing something for my comp class, hyperlinking to a post on the saying "The only disability is a bad attitude," and went ahead and reread my piece from 18 months ago. Ummm. Given my current limitations, it feels like it was one of those attempts by the universe (or God, as you please) to get my attention. So I thought, I haven't written a post in a while, and I haven't been really communicating that much with my friends, either, on a lot of the stuff that's going on, and I clicked over to the blog, and my last post, called "The Cost of Admission," written almost a month ago, pops on screen.

First I'm hit with these words, from the piece 18 months ago:

It's a constant quote going around the disability community: Scott Hamilton's "The only disability is a bad attitude." Of course, it's usually coupled with the picture of an unnamed child with a disability, and it tends to get two reactions: passed around as a positive message or harangued as inspiration porn.
What bothers me most, though, is the quote itself. According to Cleveland Clinic, Hamilton said it before undergoing treatment for testicular cancer. You know, an able bodied person saying this. A cancer diagnosis does not make a person disabled in and of itself.
Whether Hamilton meant to suggest that non-able bodied people were only disabled because they had a no-can-do attitude or not is unclear, and the quote, uttered in 1997, has gone on to have a life of its own.
It's a comforting thought--that if we have a can-do attitude we can overcome disability, but it's bullshit and unfairly stigmatizes those individuals who are disabled, remain disabled, and for whom no amount of can-do attitude is going to overcome a hostile environment and serious, significant impairments.
It's also a platitude, a saying that means nothing at all and offers no real help to individuals who might be suffering. Say it to someone enduring unremitting depression. Go ahead. If the person isn't too down in the dumps to clock you, maybe one of his family members or friends who understands the chains depression puts on a person will. And then you can comfort yourself with that empty platitude. See where it gets you.
There is much we can do to mitigate disability. There is a lot, when given the opportunity, the support, the technology, and the education, that we can do as a society to lessen disabilities, even if impairments cannot be cured/removed.
And certainly, having an attitude that is positive will help (and that goes for everyone--we must believe that we can make a difference, can create a more inclusive, accepting society), but it isn't like clicking our heels three times and just wishing so.
Any meme that goes around objectifying unnamed disabled individuals while pushing platitudes, in the end, does an injustice to us all.

A lot of the piece really hits home still, having spent much of this year depressed, a whole lot more depressed than my family realizes. The kind of depression where I had to work very, very hard to hold on.

When it gets really bad in my mind, I clam up. I've been a napper for the last several years because of health issues, which have decided to up the anty this past month, so no one gave any thought to my pulling back being due to depression, and it's entirely plausible that no one even noticed.

People can't notice what you won't show them.

A month ago, despite being ill above and beyond my normal junk, I wrote this:

Some days, nothing goes the way we plan. Some days, our plans are completely derailed and we want to throw our hands up in the air and give up. Sometimes those days stretch into weeks and months. We can't see any light, not even a glimmer. We waiver, we weaken, and we surrender.

The way we surrender, though, determines our outcome. Do we surrender and give up completely or do we surrender our illusion of control and let go?

It's not been an easy few months, and I would, if I believed in luck, say we've been short on it. But I don't believe in luck, and despite or because of the law of large numbers and all those other cognitive biases I know because I teach them, I greet unexpected events as opportunities and gifts, the chance to grow, to bend, to let our pent up emotions sometimes.
Today was like any other day. It had its highs and its lows, its wow moments and its heart aching moments.

I choose to surrender and open myself up to life in all its painful majesty, to accept the cost of admission, which is unbelievably high but undoubtedly worth it.

Since that day, though, we've had to let Lucy go (on the 15th, something we had had time to prepare for) and Little Girl (on the 29th, something we had less than an hour between realizing it had to be done and it being done).

Lucy, perking up as we put her in the car.
Under the blanket, though, 
was a cat who a month or so earlier
 weighed in at 17 pounds and who died at 7 pounds.

Little Girl, about four months old, 
a few weeks before we lost her.
At the time, we thought we had a
chance of getting the feline herpes virus
in remission. On the 29th, she went from
having relatively clear eyes to a massive infection 
in her left one that left that whole side of face swollen.

Bad enough to let go of these sweet souls. It's all fresh enough that today Bobby asked where Lucy was so he could put her with the other cats in my bathroom so we could open the back door and let the fresh, cool air in.

In this past month, though, I stopped being able to drag my exhausted self around, had three falls, managed to garble sentences instead of just substituting words, and was forced to admit I couldn't keep going as things were. I'm teaching the rest of the semester online and my life this past nine days has been sleep, grade and eat, sleep, grade and eat, and so on.

Exhaustion is always there, and the mental fogginess is wearisome. I've had bloodwork that has ruled out RA and lupus, and my WBC is fine, but there is elevated inflammation in my blood. My brain MRI was normal, thankfully.

And, miracle of miracles, my diabetes is under diet control.

I will see the neurologist on the 19th and maybe we'll get to the bottom of this. Maybe it's a huge fibro flair and time catching up with me. Maybe it's that and something more.

Even Rick's been having fun--he had a nuclear stress test that showed abnormalities (it did six years ago, too), so he will have a heart cath on the 20th. His heart, my head...well, we are middle aged, after all.

So do I still think that whole platitude thing is dangerous junk? You bet. A can-do attitude with a hell-no body can lead to some serious frustration and overdoing and that just makes things worse. Being realistic and kind to yourself is a whole lot better.

Do I still think it's all worth the cost of admission, as my heart hurts for a cat we loved for 11 years and a kitten we loved for three months? And as I stumble around the house and sleep more hours than I want to in order to get through the ones I'm awake? And as we face some uncertainty about whether I'll get back to where I can walk and talk normally instead of being a rag doll that collapses for no reason? And whether Rick's heart will need a little help?

Yeah...I still do. It's a question I ask myself alot. I suspect as long as the answer is yes, in the end, I'm okay. I'm frustrated, but I'm ready to keep on going, keep working to hold the depression at bay. I can see a lot of my kids and their wonderful selves from my chair when I am awake. And I delight in conversations with them. And I hold the girls when they cry, as they do their homeschooling and realize how screwed up and unjust this world really is. I watch them pick themselves back up and dig back into territory that is not for the faint of heart. I watch the boy and his generous spirit and his enjoyment in discussin geek things with his sisters. I listen to them, when they are all three in his bedroom playing video games, both enjoying themselves and laughing and arguing about various details. And I still have a lot of animals to love on and who love on me. And a sweet husband who held my hand the entire time I was having a panic attack in the MRI machine. 

It's still worth it. I wouldn't change a thing as it would change everything. I'd like some answers, though, and I'd like to wish myself well or work my way there, whatever it takes, but I'll choose to learn what I can from the universe on whatever path it places me.

But please don't tell me the only disability is a bad attitude or you'll see both in one woman.


The Cost of Admission

Some days, nothing goes the way we plan. Some days, our plans are completely derailed and we want to throw our hands up in the air and give up. Sometimes those days stretch into weeks and months. We can't see any light, not even a glimmer. We waiver, we weaken, and we surrender. 

The way we surrender, though, determines our outcome. Do we surrender and give up completely or do we surrender our illusion of control and let go?

It's not been an easy few months, and I would, if I believed in luck, say we've been short on it. But I don't believe in luck, and despite or because of the law of large numbers and all those other cognitive biases I know because I teach them, I greet unexpected events as opportunities and gifts, the chance to grow, to bend, to let our pent up emotions sometimes. 

So when we were forced off the road this afternoon by an oncoming vehicle and the drop off was enough to shake us up, bend the rim and cut the tire, leaving us a quarter mile from home, I could have let it ruin what had been a lovely lunch with the girlies, a favorite friend and the cutest one-year-old I know, followed by the girlies spending their birthday money on Legos.

Instead I called Rick and he drove down to change the tire. While we waited, a nearby neighbor came out with his jack, ready to help.

The rim and tire are shot, and Honda wants nearly a grand to replace the rim and tire. Not money we have right now, so Rick called around. We'll order an after market rim and new tire from Pepboys for a fifth the cost when we get paid, and they'll order the rim. So, my car is parked for at least ten days. 

Some of the most important lessons I've learned my daughters taught me. They were un phased by the experience and started building their Legos as soon as we got home. Because neither Rick nor I complained, they took it in stride, a minor detour from their planned day, but no big deal.

And it's really not.  Not in the scheme of things.

Not as we live our lives in this ever increasingly shrinking world where we are connected to friends all over the world through the magic of the internet. Not when we have the opportunity to bear witness to the devastation so many people experience.

We talk about our problems, some of us recognizing it's a first world problem and feeling a slight guilt when we know that third world problems are so much worse. They always have been and always will be, so let that vague embarrassed guilt go.

Today was like any other day. It had its highs and its lows, its wow moments and its heart aching moments.

I choose to surrender and open myself up to life in all its painful majesty, to accept the cost of admission, which is unbelievably high but undoubtedly worth it. 


The Yogibo Max

10% off coupon code: Countering

Last week, I was contacted by Yogibo.com to see if I'd be willing to accept one of their bean bags to review, specifically in terms of how my children on the spectrum found it. When I looked at the site, I started drooling. We were very kindly sent the Yogibo max, which is six feet by two feet by two feet and priced at over $200.

I am in love with this bag. My girls are in love with it. My husband slept on it, it's that big. The cats are impressed. And the dogs think it is theirs when no one else is on it. 

The girls have laid on it, reclined on it, laid under it, laid side by side on it. You name it. They've done their school work on it. The couch has not been used since the Yogibo Max arrived.  That is how awesome it is.

If I had money, I would redo the living room in them! There are several options and lots of colors to choose from.  

Yes, I'm biased. We were given an expensive product free that my girls love, that provide sensory input that is calming, that makes them feel special. But, trust me when I tell you this is better than Temple Grandin's hugging machine. It's soft but heavy enough and large enough that when you lie under it, you feel pressure. I've used it that way. I would totally do a double in my room for me. It would be my safe space when I'm overwhelmed by kids, critters and the demands of my job and my anxiety disorder which tend to render me skittish and unwilling to be touched. 

So, anyone with 400 dollars, consider that to be my Christmas gift wish.

Yes, that's the Yogibo max under batman decorations and dogs.

Here's the Yogibo max out of the box.

Definitely dog approved.

Kids testing it.

Go to www.yogibo.com and check out their stuff. Kathleen at Autism Herd also wrote about it and if you up use her coupon code, you can get ten percent off.  Totally worth it!



A Sunday Epiphany: I was due one

You ever notice how epiphanies come  at the weirdest of times, you know, like at six in the morning when you are sitting on the toilet surrounded by six cats of various sizes all meowing and some of them climbing on you? And you're talking to them suggesting that if they weren't climbing their way up your body, you would totally be able to pee quicker and then they'd get fed quicker and it would be a win-win for everyone and then the dogs wander in and wonder where their cat food is?

Yeah that. But still I had an epiphany, which the critters were not impressed with when I yelled loudly, "He was totally scripting!" This epiphany was in relation to a conversation I was having with Bobby, which I don't go into detail here, because it wasn't the conversation so much as that it took me 8 hours to get what was going on. He was using bits and pieces of dialogue to explain something I didn't get at the time.

So we had a talk this morning about emotions, feelings, moods , innate temperaments and situational behavior, which was probably me scripting from prior psyc lectures, but whatevs.

Anyway, after we were both thoroughly confused and exhausted but maybe realizing we should skip these kinds of talks in the future (I'll let Lily do them), he kissed me on the cheek and took the dog for a walk without being asked,  by the dog or me.

I'm pretty sure that's because I'm such a motivational speaker.


Whatever. The other title was great before you ate it, Blogger.

“I've crossed some kind of invisible line. I feel as if I've come to a place I never thought I'd have to come to. And I don't know how I got here. It's a strange place. It's a place where a little harmless dreaming and then some sleepy, early-morning talk has led me into considerations of death and annihilation.” 
― Raymond CarverWhere I'm Calling From: New and Selected Stories

I was freaking insightful but blogger ate it, so you don't get to appreciate that incredible epiphany.

Don't worry. There wasn't really an epiphany, I rambled about being lost, absent minded, confused and unsure about everything. 


Break, then--that's what crazy glue is for

Several years ago, I was told by my therapist, who was trying to be helpful, that if I hadn't broken yet, I wouldn't in the future, in response to my concern that I would face the same mental health issues some family members had, that I would, in fact, at some point break.

That's stuck with me, but not because it made me feel better about the several challenges I was facing, but because it made me feel pressured to continue to be the one that kept on going, didn't make major foul ups, to keep being the responsible one.

That one sentence from my well-meaning therapist, meant to console and empower me instead made me often feel worse about myself and the challenges I was dealing with.

If I could go back three years and offer myself an answer to that question, based on my in-depth awareness of just how much I mask of my internal states, I'd say something completely different than the therapist did: what I needed to hear then, what I still need to hear.

Breaking is okay. It happens. It's not the end of the world. It doesn't make you a failure. If you break, you are not alone and we will pick up all the pieces and put them back together and you will be stronger yet softer for it. You will be more compassionate, kinder. You will know that we all need to be taught to bend, to change, to ask for help, to speak our story aloud, and that when we are true to ourselves, those broken pieces will fit back together so much better.

You also need to know that you will live experiences that will shatter you. You will think you'll never be able to get past it, that part of you will remain there, in those shattered moments and that's okay, too, if you remember to stop and love yourself, all of yourselves, the ones that are shattered, the ones that are bending so far you are certain breakage is inevitable, and the ones who have risen, stood back up and prepared to battle yet another day. We contain multitudes, after all, and the sooner we learn that truth, the easier it will be to love all of ourselves, even our contradictory and difficult selves.

I have broken in the last three years, several times. Some of those shatterings I hid until I couldn't any more. I am a work in progress, and part of that progress is learning to admit aloud to others when I'm struggling and when I need help. And then to follow through to get that help.

And to keep telling myself that breaking is just part of life. Break, pick up the pieces, and see what kraggle* and duct tape can do to get me on my way again.

There are worse things than breaking. Breaking leads to change and growth. 

There ARE worse things than admitting I don't have this, that I need support. That's what I would have told me three years ago, if I'd been my therapist. But she didn't, and I stopped seeing her because I couldn't be honest about the depth of my despair or what all I was struggling with. The facade of having it together was more important than telling her she was wrong, that I was broken in innumerable ways. 

Admitting I'm chipped and scuffed and missing some of my polish, that's actually not so hard, not so bad. It's a good thing to teach my girls, to be honest about ourselves with our loved ones. They still love me. Rick, who knows all of me, has never wavered in his love or support. Sometimes he's missed that I've shattered, but that was my fault for hiding it from him.

So maybe I come out the other side of these confessionals like the Velveteen rabbit, real if tattered. I honestly don't know, but I do know I have to tell it, own it, embrace the lessons and move forward, always ready to look back and reach out a helping hand to the me's who are struggling to find their way.

*kraggle--Lego movie


Mixed, with a chance of serious storms

Not the weather, me.

Not the weather. ME.

I hate admitting to struggling.

I hate feeling the storm brewing in me, the internal tornado...the sense that I'm about to fly off, scatter into pieces, shatter beyond repair.

Even more, I hate that to a degree I can contain that tornado so that most people are unaware that anything is amiss.

I feel like it's unfair, not to me, necessarily, but to those around me, so I bottle it up, let it trickle out in the purchase of things I don't need, animals I shouldn't take in, books I may never read, shoes I may never wear.

And so on.

The biggest issue is the crippling anxiety, the certainty that I am in over my head, that I simply can not do another single day. And yet, I've survived every day prior, so I know I will get through today too.

The obsessions distract from the anxiety, from that slow, sure sucking away at my soul's reserves, the strength I keep having to find. It costs, this continuing, in ways that people who have not lived with all day every day anxiety cannot imagine.

Oh, sure, we all worry. Yeah. True. But every single second of your waking hours is spent replaying every possible scenario in your head? All the possible harm, all the possible damage, all the bad things that can happen?

I know I'm in trouble when the cutting images come. I once, when stuck at basic training for six agonizing, brutal and abusive months, cut. It was the only thing I had control over. There was no escaping the drill sergeants and their total control over my body and my life. My profile buddy and I would steal the keys to the building we lived in on the nights the worst drill sergeants had overnight duty. It was our way of saying no and making sure we were safe. They never told on us, so they knew what they were trying to do was wrong.

It was a victory of sorts, to hold those keys over night, listening to the door handle rattle and know they weren't getting in, at least not that night.

We'd pay for it in other ways, but it was worth it.

That's 27 years ago and it feels like now.

I don't think we escape our pasts. I think we can hold it hostage, lock it away, but it can outsmart us and steal the master keys when we least expect it.

And this wasn't even the  issue this morning--the news with the young college student hauling her mattress around everywhere simply added a fun dimension to a day I was already struggling with...

At some point, even the most navel-gazing writer realizes telling his or her story involves other people's stories, too, and then we realize maybe we shouldn't, maybe it's not okay.

That happens for a lot of us when our kids are teens and we realize we aren't the main character in that scenario any more.

And when it comes to autism and adult children on the spectrum who are entirely dependent on you, it's a betrayal at a fundamental level to talk about that relationship outside of the wins.

It's not always wins, though. And being multiply challenged and disabled as my adult son is means a fair amount of difficulties he faces each day, and that we as his family face with him. Those aren't mine to talk about. It's not the end of the world, nor are things bad. They are just challenging, for all of us, as we work to accommodate and facilitate a life based on what he wants for himself.

It's not all bad, either...Most of it's good. And so when I struggle, in part, over the hurdles, I feel like I'm not honoring him and everything he overcomes every single day.

And here's the kicker...my issues take up and make up more of the challenges I deal with than my children's challenges do. I'm not perfect--I'm incredibly flawed and dealing with the depression, the anxiety, the obssessive behavior, the apparent need to save every body else...well, that causes far more difficulties than autism ever has in our house.

And if I don't own that, speak that truth, I deny myself, my husband and my children the chance to leave some of my baggage behind.

Except I don't honestly believe it can be left behind. I can rationalize all I want. I can go into therapy repeatedly and have, but this is as close to touching the issues as anybody is ever going to hear or read.

I'm not sure what value there's been in writing this other than the images of engaging in self-harm have retreated, so I know I've boxed some of the garbage up again and I can walk out of my office and no one, short of those who have read this, will have any idea what's going on behind my eyes.

So, just remember, just because someone is functional, funny, and caring and to all appearances okay--that doesn't mean anything other than the mask is on securely for the time being. That's all that means. Nothing more.

*Here I would do a disclaimer and say I'm fine, blah, blah...but seriously...I can honestly say I am in no danger of self-harm, that I see my primary caregiver tomorrow and will discuss this, and that your reading this has made it easier for today for me. And that, Rose, I'm tugging the red string and feeling better knowing you're at the other end.


Two decades in: What autism means in our house

This is Bobby, our oldest, wearing our cat Hammy, as you do, naturally. In December Bobby will turn 25. A quarter of a century old. 1/4 of his way to 100, although fractions are not his strong suit, so he probably, almost certainly, wouldn't be able to describe it in those terms to you.

Bobby is autistic and intellectually disabled. That's what the government, both local and national, focuses on. His impairments. His not-able to's. Every year I fill out guardianship papers and SSI paperwork to show how Rick and I have cared for Bobby, how we have managed his time, made sure he socializes and we account for how we spend his money. 

None of the paperwork asks the important questions: what does he enjoy doing, what is he good at, is he happy, does he have the life he wants. 

Two times a year I am asked to focus on only his inabilities. Truthfully, each day he and we have to face the realities of an impaired working memory, damages from a stroke affecting his left thalamus, and a very low 1st percentile verbal performance. The truth is, none of us ever forgets his challenges because constant accommodations are made each and every day to take advantage of his strengths and to minimize the effect his disabilities have in his life.

It is, in many ways, a carefully constructed environment, catering to making his life and the lives of his sisters, who are also autistic, good lives that focus on their well-being, their happiness, and on focusing on what it means to live a meaningful life. We don't shy away from the world in all its glory and horror. We work on how to live in the world while not being of the world, on how to honor our individuality while learning how to navigate the world, on how to create meaning when we can't find it, on how to be kind and giving despite the opportunities and expectations to engage in casual cruelty.

We work to find our own style and to embrace who we are.

Even if that means we are on our way to our very own clowder of cats since there are always animals in need of a loving home. 

Autism and autistic are not words of shame and regret in our house. They are nouns and adjectives--descriptors of uniquely wired minds that process the world in profoundly different ways. Finding another person who is autistic or who has some of the traits means finding instant friends, instant recognition of one's own tribe.

The world, at the end of the day, will still be there in all its majestic horror. We can always peek out at it and choose how we will react to what is happening, where we can give aid, where we can be kind, when we need to stand and be counted, but it will never define who we are.

I wish that I had known this at my kids' ages. I wish I had had their wisdom, their confidence, their exuberant delight in themselves and in each other when I was their ages.

The truth is that who I am, embracing and loving and honoring that truth, I learned from them.
And part of that is the importance of play and dress up and silliness. And pink boas, especially pink boas.


Drama-free, or nearly so

It's been interesting, this summer, and it's flown by. Two weeks left and back to work I go. I took the summer off from teaching, but was lucky enough to watch the sweetest baby this summer, and the change she's brought has been a godsend. I've been moping a bit the last year or so over the lack of grand babies and the probability that I won't have them unless the girls change their minds some day.

Let me tell you that holding a baby and loving on her for hours several days a week is absolutely absorbing and joyous. Moping gone. She has been a wonder at keeping me busy while still leaving time to join the kids in watching movies and anime and sitting and reading manga and novels with them. The kids have delighted in the baby and have become attached to her and now initiate contact with her. They went from holding her facing away from them to facing them. The girls have become just as attached to the baby's mom, a lovely woman who accepts and enjoys them as much as I enjoy her sweet girl.

It's been good for us. It's kept me busy and home and happy.

In addition to the change that loving on a baby has brought, we've had the addition of a chiweenie we adopted from the shelter. Three days after adopting her she became very ill and was diagnosed with parvo. We were able to get her help quick enough that she survived. She is my Sweetie. 

(Sweetie and baby) 

At the end of June we accepted a four year old cat named Mia into our lives. She has some adjustment issues, having always been an only cat with a single person. She's made a lot of progress, although I'm not able to touch her yet. That's okay, though, as I'm patient and her home here isn't contingent on her being a lap cat. We'll work with her where she is.

So this has been a bit of an unexpected summer. New critters, babysitting, among other changes weren't in my mental agenda. It's worked out in ways, though, that I could not have predicted. It's also been a relatively drama free summer. Thank heavens. 

Here's hoping the last two weeks are just as drama free! 

And then there's yesterday's adventure to an orphan kitten rescue...

Yup, this happened. Say hello to Tootie the Ginger girl, Alex (Lily's), and Klingon (Rosie's). Tootie is over three months old and the only one of her litter to survive. The blonde kittens are brother and sister and are six weeks old. They are happily adjusting to their new home. Mia and Hammy are not thrilled, but Mabel and Lucy took it in stride. We will introduce the kittens to the other critters slowly. 


A Family Tradition

Each summer, the kids and I eagerly await the yearly library book sale. We go at least two of the four days, and we spend hours jockeying for position and searching for goodies. And then we come home and lay the books out on the floor and take stock of our booty. This year, we weren't able to lay the goodies out on the floor--six cats and four dogs plus the rearrangement of our living room made that task unwise at best. This is the first year I didn't tally the number of books we got (although we did count the manga Bobby scooped up: 33) and we didn't go back on Sunday for the $6 bag sale. 

We're saturated with books, as regular readers and friends know, so you're probably wondering where the tableful of books went since the bookcases are exploding. Let's just say I've taken artful stacking to a new level and that we've maxed that out if I don't want to get to hoarder status. 

The sale this year coincided with my 46th birthday, so it made for a special birthday. It was the first birthday in many years that we didn't make my grandmother's traditional meal for me: meatloaf, scalloped potatoes, strawberry cake and strawberry ice cream.  Maximum spending money for books took priority and I forgot about it till the afternoon. Oh well. Payday will be here tomorrow and I'll get the ingredients then. My grandmother has been gone for 19 years now, and it feels a little unreal. I had a complicated relationship with her, in part because she was bipolar, and in part because she was a difficult woman, but her birthday dinners for me were her way of displaying her love for me and my upholding of that tradition is my way of honoring her. The books are in part my way of connecting with my other grandmother, who loved to read and would race me to see who could finish first. 

I'm not much into tradition, but these I hope I can continue. Feeling connected to those who are gone, sharing our fondest memories with those who will be here long after we are gone...that kind of personal tradition makes sense to me. And I hope to my children. 


If only relationships came with a Lego manual...

We've all felt betrayed at some point--been the butt of someone's joke, found out that so-called friends were talking about us behind our back. Middle school and junior high--that was standard operating procedure. 

But most of us leave our childhood and childish behavior behind. We take with us the scars and the hang-ups, and as adults, we still find ourselves in situations where we feel like we're right back there, and the scars rip open.

It's no fun to go through. I'm not sure if it's fun on the other side, to be the one snickering, the one twisting the knife, or if most the time it's simple miscommunication. We've all been on the receiving side, and we've probably been on the other end, too. No doubt we've felt justified when we snicker, when we mock, when we act passive-aggressively towards someone. We've rationalized the behavior, decided we have the moral high ground, or that we were just kidding.

Both parties know, though, the difference between just kidding and being shitty.

If it still rips me up when it happens to me in my mid-forties, what the heck does it feel like to our kids, the children we work so hard to equip to face the world, to distinguish between genuine friendship and lip service, when they are the butt of the joke? When they realize they fell for lip service?

Relationships are tricky--going from acquaintance to friend is fraught with obstacles, and all it takes is a big enough miscommunication or a large enough divide in something important for it to go all the way in the opposite direction to hurt feelings and no relationship at all.

As big boys and girls, we know that, but we also know it sucks just as bad every time it happens to us. And the blow is even greater when we watch it happen to our children.

One of the things I try to remember before I react is to consider intent versus delivery--something I sincerely hope with all my heart that people will do for my children, for whom communication is often so difficult, and for whom friendships are like diamonds to be prized above everything else, even Legos. 

What was the person's intent? Is it possible that the person is stuck in a situation where he or she is unsure of how to react? Does the tone of voice and word choice not match his or her emotional state (much like my Bobby's communication)? How can I get clarification of the person's intent without deepening the potential miscommunication?

Online, or via text, time is on my side--I can stop and think before I react with my gut. I can run it by other individuals. I can sleep on it. I can reread it or replay it again as many times and from as many possible angles as I can think of.

I can do that before I choose to act. I can avoid knee-jerk reactions. I can try to separate out my emotions and get myself in check before I respond.

Sometimes, that's enough. Sometimes, it's out of my reach. Sometimes friendships end and end abruptly with no chance for closure, and those hurts tag along, ready to attach themselves to new relationships.

My children have taught  me to be direct and blunt, to be honest. To avoid pussyfooting around issues and to directly ask. I love it when I can engage in relationships where honesty, unvarnished and sometimes acutely blunt, prevails. I know I can stop at their words. Except for those times where I can't and I need to ask for clarification. And that's okay--it's so vitally important for my kids to learn that they don't have to pretend to get something, that they can ask direct questions until they do understand--that they will be met with patience and acceptance--when I provide that to them, they provide it to me. My adult friends with kids on the spectrum are very similar--we speak our minds and we give each other a break and we work to make sure we understand--well, at least the friendships that have lasted do--and maybe that's key. Maybe that's the difference.

We give each other a break. We give our kids a break. We breathe, we back off, we wait and we make sure. We cut each other slack. And we do our level best to always be genuine in our communication.

I believe that's one of the most important lessons I can teach my kids *and that they can teach me* is to have faith in each other's good intent and to be compassionate. 

To wait. To listen. To accept.

But somehow I also have to teach my kids the unfortunate reality that we have to know when that's the right approach and when it's not, when the right thing to do is to end a relationship because the other party is disingenuine. 

How do I arm myself and my kids with this polar opposite mentality--to trust until the other person gives you reason not to, to give until the other person shows you all he or she does is take?

How many chances does a person get?

How do you find a way to be direct when the other person is passive-aggressive?

Can you? Or is anything you do also going to be passive aggressive? Is there any point in being direct and asking questions regarding intent to someone you've realized is passive-aggressive?

Hell, is this post tacitly passive-aggressive?

If we as adults have such a difficult time untangling this kind of stuff, how do we expect our kids to do it? 


Rhythm and Order

Photo: What homeschooling looks like in our house. Lily finished White's The Once and Future King today  and we had an extended conversation involving all three kids and me on the code of chivalry, ethical behavior, tragedy, and conflict, Magneto & the X-men.

We have been exclusively homeschooling the girls for a full year now--we work through the summer, as well, given that we all have a need for rhythm and order, as well as a love of learning that takes no breaks.

Much like I did with the boy, we learn while cuddled on the couch, sitting on the floor, or lying in bed watching documentaries or reading in splendid relaxation--whatever works for them. 

It's been a good year for them. They have pursued their interests at their pace, worked together, and shared with Bobby, who's been there to assist with material needs. They've been a team, sometimes a team that works well, sometimes a team that's loud with disagreements. It's not been perfect, but they've been happy, they've learned a lot, and they've gained in independence.

We are learning a rhythm and order in our lives together, lives that are admittedly more entwined than many families may be. We share many of the same interests, though, and in many situations regarding those special interests we are all on even footing.


They are more comfortable in their skins, more confident, and far more capable of handling change and new things than they were a year ago. They are better at compromising, as well. It may be a noisy compromise, but it happens and that's what matters most.

It can be all too easy in looking back over a year in the life of the family to focus only on the pleasant bits, and it would be remiss of me to not admit to a number of challenges and hurdles in the need to brag or prove that I was right to homeschool the girls.

It's had many challenges--sometimes literal thinking makes it hard for a change in the schedule or in the books used. Rosie struggles with this--unable to easily substitute subjects not done on the same day because of some hiccup in the schedule. She is extremely sensitive to conflict, so finding novels that are safe enough for her to read without setting her into full on meltdown has been a tremendous and not always successful challenge. History is a difficult subject for her for the same reasons.

Neither girl likes to write, so we've had to work hard at overcoming this challenge--they'll talk your ears off on any of the stuff they've learned but are incredibly reluctant to write.

They abhor worksheets because of their experience at school, so math problems have to be done through apps, and finding the right level of challenge for them has been harder than I would have preferred. Word problems are a serious difficulty for them, in part because of the way their minds work and in part because who really likes bullshit word problems?

These are blips, though, and the truth of the last year has been one of watching the girls exceed their brother's skill set except for in cooking. This is something every one of us is acutely aware of. It's been a year of questions--the girls went from never asking to continually asking, and many of them relate to Bobby. Why Bobby forgets everything...why Bobby disappears...why he argues about everything...why he talks through everything...

Finding a balance between respecting Bobby's autonomy while offering him the opportunities to advance his skills while remembering the degree of his differences feels more and more like a tightrope walk. I don't mind falling off as long as I've erred in his favor. I don't want to ask more of him than he's capable of and I don't want to deny him the right to exercise control over his own life. Explaining that to him and to his sisters, while trying to keep it all straight in my own head has been the hardest thing I've had to do the last year. 

There are no clear paths, nobody really to model our journey on--it's uncharted territory because it is uncharted. It's his life and it's being steered not just by him but by me, his father, and to a large degree, as we work to create a rhythm and order for the kids that will last them their lifetimes, his sisters. We're all in this together and we are working hard to make all three of our children competent in managing their lives. It's not an easy task when so much does not come from social learning. Everything has to be explicitly taught in concrete terms and clear, reasonable explanations are required. We want them to be critical thinkers, skeptical of people whose promises come too easily. We want them to be there for each other, to function as a triad, so part of what we are doing is working to fade out our assistance, to become equal partners with them as they grow rather than autocrats who hand down orders from on high.

I'm making a very long term bet here, and I won't have any way of knowing if it pays off because the real test of their functionality will come after I am gone.

Maybe we'll all succeed beyond our wildest dreams and we'll find out much sooner if they choose to live independently and separately with families of their own.

So part of our work on establishing rhythm and order involves programming dischord and chaos--unexpected change and how to react rather than freeze.

Maybe, just maybe, I'm covering all the bases, but that's the whole thing with unexpected change--there's no way to know for sure. Since there's not, a lot of attention is being paid to teaching them to be true to themselves. If we can just do that, I have faith that the rest will all fall in line.


Hollyhocks and Roses Aplenty, But Words Are Few

I'm impressed despite drought and benign neglect,
to see that nature and past nurture
win out. 

Enough to make me 
take the time to
linger in the garden,
photograph the profusion 
of glorious reds, pinks, and yellows.

Enough to think
perhaps some 
water is in order.

Something so determined 
to thrive despite hostile environs
deserves at least some equally benign
attempts at assistance.