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.