For the first time in months, I am truly alone in the house, if  you don't count the five cats and the two dogs (one of which is lying on my legs).
(after writing the post, Lucy joined me)
The silence is the most remarkable thing. So is the sense of space. I've been retreating more and more to my bedroom these last two months, seeking the silence and solitude I've been without. Funny that over four years ago when I first got my taste of extended aloneness with all three kids off at school or the center, I didn't know what to do with it. I did my damnedest to fill every single moment with action, and now finally, all I really want is a chance to recharge, to be alone (relatively) and just breathe.

At first I associated this intense need to be alone with depression, which I have to admit I am struggling with. I felt guilty, which of course made me feel even worse. How could I need to isolate myself from my family and hide in my bedroom?

It's so ingrained into parents of kids with disabilities that we are supposed to be on 24/7, working actively with them, especially autistic kids, to bring them out of their shell--if they want to be left alone to play or engage in their special interest, we must interfere and interrupt.

Of course I've felt guilt and wondered what was wrong with me for wanting to escape to my own space where I could indulge in my own special interests like reading without having to listen to children who still have no concept of inside-voices or watching netflix, catching up on shows I never had a chance to see.

And you know what--that's bullshit--the guilt, I mean. I realized that mostly this morning but kinda over the weekend. When I escape to my bedroom with books piled on the bed just waiting for me to dig into them, I feel happy, a rush of energy and joy. Screw letting guilt take that away from me.

You know why I realized the guilt is stupid? When I would come out to check on the kids and Rick, they were all happy too. They were engaged in their own activities--much of the weekend and the last two days into Dungeons and Dragons--all four of them engaging each other and happy as clams. They didn't insist I join them. They didn't make me feel bad for not wanting to play (I don't like games). They waved happily at me as I wandered back to my room. They each would wander into the bedroom to touch base, linger for a few minutes and share with me their progress.

I think it's more than a bit funny that it took to the age of 45, in the midst of a suffocating depression, to reorient myself and realize that it's more than okay to want to be alone, to engage in the activities one is interested in, and to be able to say no to things one doesn't want to do.

Realizing this makes that too-tight feeling, that suffocating sensation lift, maybe not completely, but enough to where I can get a few deep breaths in.

And that's what I'm going to do--keep getting those deep breaths in so that I have enough oomph to keep going, to keep moving through this life that will always have sorrow threaded through it, and I will hold onto those pockets of joy in the belief that they will help sustain me through the rough patches.


A Family That Plays Together

Best 20 bucks we spent!
A starters Dungeons and Dragons kit.
The four of them have been playing 
since we got it Saturday.

It's lovely to see the four of them 
playing together.
It's also lovely to be given the chance 
to have a break and read James Patterson books 
and watch a marathon of Criminal Intent.

It's been a long time since I had alone time. :)
I'm enjoying it almost as much as they are
enjoying Daddy time.


Tired: Caregiving, Grieving, and Pitfalls of Parenting

Have you ever seen One Flew Over the Cuckoo's Nest? Bancini is tired, and when he does talk, it's to tell everyone, over and over, that he's tired. Those images of Bancini rising up and telling everyone his truth have been in my mind a lot lately, and not because I just finished teaching the novel again in the first summer session.

I'm tired. Not just bodily tired, either. Tired in spirit, in psyche. Tired. That sums up my emotional reality right now. 

I'm tired.

And that makes me feel guilty. And heartbroken.

Because I'm tired and it's not fair to the people who need me to not be tired. I'm sad. And that makes me feel more tired and more guilty and maybe the heartbreak is the real reason I'm tired, not the other way around.

This summer we've made significant changes, struggled with decisions, worried about making sure everyone gets what they need, but those changes and decisions mean I've spent much time anguishing and then feeling the grief and its tandem guilt weigh me down.

It's not fair, on so many levels, and the fact that it appears to be my problem only, not my children's, makes it all the worse. I may be in the middle of a pity party, except I don't feel sorry for myself. Well, I hope that's not what it is. I won't let it be, if that's what's going on. I would personally kick my own ass, if I weren't so tired.

See, here's the thing. There's no book on how to parent an adult child who needs continued care. There's no book on how grief will settle into one's chest and create a fist sized hole of ache that takes one's breath away when it's least expected. Not one I've found, at least, that tells how to navigate this and get out on the other side.

One of the changes made this summer was reducing Bobby's volunteer load to one day a week and having him home the rest of the time with his sisters. And honestly, that's worked out beautifully in many ways. It's stopped the weight gain he was experiencing with the opportunity to eat constantly, and it's allowed for about twenty pounds of weight loss for him--that's great, and positive, and when the grief isn't twisting my heart and shredding it, I feel happy about that, that we're getting that issue under control before diabetes can settle in and create challenges I'm terrified we can't overcome.

He loves being home with his sisters. They get along so well, have the same interests and spend hours with each other, happily invested in those interests. Also great when grief isn't clouding my vision.

They baked yesterday, and they were all so proud that they'd worked together. It was lovely. Of course, when grief isn't making my stomach feel like there is a ton of bricks in it.

The grief comes when it isn't fair. I have three happy, healthy children who are delighted with the changes we've made, the lives they are building and their deepening relationships with each other, the increasing interdependence that in my heart, when grief leaves me the fuck alone, makes me certain they WILL be okay because they really will have each other, and together, they can do everything, anything.

So if everything objectively and without the prism of grief is going so well, if they are so happy, making progress, enjoying themselves immensely, why do I feel like Bancini: bone-crunching weariness that leaves me wanting to weep and wail?

It feels like a betrayal of all they are accomplishing and that I'm indulging in a pity party. It's not all grief, perhaps not--the lingering depression that muddies my perceptions doesn't help. My frustration with health issues and the meds I'm on to deal with them has certainly been a contributing factor to the Bancini Effect, as I've decided to call it.

Here, though, even though guilt piles on, is the truth, the crux: I expect the heartache when I do guardianship papers. I expect a twinge of it when I do the SSI paperwork each year. I'm prepared for those. I know they're coming, and I have hope that the grief I feel on those occasions will lessen, float away. Leave.

I wasn't prepared for this summer, when Lily took over some of my responsibility for helping Bobby through the day. I wasn't prepared for her being able to be his alert system, reminding him of the things he needs to do. I was less prepared for how fine he is with her taking over some of that responsibility for me. That he was happy she does it. I know, it's actually a great thing--interdependence, a joyful, willing connection between them that is mutually gratifying for both of them--he helps her, she helps him--it's all good.

It isn't fair that they can be so good with that while grief twists me up and wrings me dry and leaves me devastated. If they're okay, then I should be too. I've done my job--I've taught them that we all have differences, that we all struggle, and that when we work together, help each other, those struggles are lessened, and it's all good. It's okay.

I taught them that, but the mother in me that sees my beautiful young man with a heart so pure and sweet and giving and then grieves for those differences between him and "normal" young people his age (at his age I was married and mother to his two-year-old self) obviously isn't walking the talk.

So I bury the grief and become Bancini, tired, and that's bullshit, too. It's okay to be sad that things are different while still celebrating the wonderful in those differences. To do anything else means making the problem worse.

It's not my children's problem. It's mine. I grieve for what I wish for them and when I deny that sorrow I let it grow and eat at me and that could make it their problem, too.

They are beautiful and happy and making their own lives, lives that are different from the norm, but that's okay. Just like it's okay for me to let sorrow out of its lock box and talk to it, point out to it what we do have and how wondrous it is, even if it's harder than I wish for them.

The grief still lingers, an ache in my chest, and maybe accepting its constant companionship is simply part of hitting middle age and living a full life where joy and sorrow walk hand-in-hand together.

Not acknowledging that we ache when our children struggle through hardships is one of the pitfalls of parenting--it closes our eyes to the good, the sublime, the wonderful. It denies that reality that life is sorrow and joy, frustration and satisfaction, exhaustion and vitality, and all the other contraries.

It's my job to get a handle on this reality and model it so that my three will be equipped to face life, ready for its duality. I have a feeling, though, that they may already be better equipped: they truly have each other.

And maybe that, making myself check my inventory, will banish the grief for awhile and let me refresh my spirit.

After all, witnessing these children's beautiful spirits is the greatest blessing in my life:



Ifs, Shoulds, and I-know-betters

Come on, we all do it. We sit on the sidelines and watch other people and we think ifs, shoulds and I-know-betters. That's a good portion of the conflict within the autism community.

We're certain our answers are better, that our knowledge-base is more extensive, that if only we were doing that, we'd be doing it so much better. That's why Sanctimommy is both bitingly funny and disturbingly guilt-inducing.

Not only do we engage in this behavior throughout our day, we are of course on the receiving end. It hurts the most, hits the hardest when it is our supposed support system that lights into us, when our family fails us and blames us for our children's autism, issues, behaviors, or even worse fails to see that the autism is very real and instead thinks that our children are brats.

"If I had him..."

"You should...."

"Well, I know that..."


It's hard to be on the receiving end of that kind of judgmentally-uninformed opinions. After all, how many people who offer this kind of advice have actually lived around the clock with our children and us and seen our children clearly--how wonderful, how funny, how sweet, how challenged, how frustrated they are, how hard life is for them, how the world often recoils at them, how overwhelming and confusing the world can be for them?

And yet, even though we know how hard it is, we find ourselves doing the same thing with other families in similar situations. Sometimes we're overt, aggressive, and pushy, and we do the ifs, the shoulds, the I-know-betters right to their faces or on their facebook walls, and our words drip with condescension and judgment. Sometimes we just say it to ourselves, pat ourselves on our backs and smile a smug, satisfied smile as we think to ourselves how much better we're doing it.

It's the easy thing to do, you know. We're human, we're certain we're right, and if others disagree with us, they must be wrong. We bemoan how black and white autistic thinking can be, forgetting that human thinking is black and white. It's not an autistic trait--it's a human trait.

We have to actively work to live in the gray, to concede that we could be wrong, that there could be multiple ways of handling the same issue, and that all of those ways might be just fine.

Imagine that: multiple paths, multiple ways of living, no one wrong way or one right way, but individualized ways. Hmmm. Hard to be condescending if we live in the gray, but so much easier to be compassionate. We have to consciously place ourselves in that gray area, though, with mindfullness. It's not the easy way to go, and it means letting go of smug satisfaction and certainty, and it's a continual process.


Thoughtful Dialogue Instead of Sanctimonious Tearing Down

This is a tale about a normal day in the autism community online: someone bares her/his vulnerable self in a gutsy post that gets people to consider all the things we keep buried inside because it shows the human side of us, the part that's frail and not always noble. This post divides people into two groups: those who appreciate that the blogger has expressed a truth we share and those who see the opportunity to show how much better they are than the blogger.

I know both sides of this. I'm not ashamed of my vulnerable, weak human side that feels jealousy at times. Right now, for example, many of my childhood friends  are watching their children leave home, go to college, fall in love, get married, and become parents, making my friends grandparents. I'd be lying if I said there isn't a sorrow I feel and twinges of jealousy for experiences my oldest isn't experiencing. I'm human, so it's to be expected. I acknowledge these feelings so that I can set them aside and focus on what I do have: the blessings of being close to my son, of seeing him everyday, of talking to him, of watching him play for hours with his sisters, all of them entangled in each other and being incredibly joyful in their play, and when I do that, the jealousy slides away and I am grateful. I am all the more grateful because I  went through that process.

As I said, I know both sides of this, as a blogger, as a person. I've laid myself bare and been eviscerated for it. There's a visceral reaction to seeing someone take your words, your emotional reality, and either misrepresent it or just flat out tear you apart. Your gut is twisted in knots, your heart feels constricted, there's a lump in your throat, and you look around for cover, alternately wanting to hide and attack the person who has done this to you.

I've also been that person to do that to you. This I continue to be ashamed of. Because we disagreed on vaccines and I thought the treatments you were using and the language you used to discuss your child was appalling, and because you wrote at Age of Autism, I felt obligated to point out to the world how awful you were. Hubris.

Instead of recognizing where you were in your journey, how much you were hurting, how desperate you were to help your child, yourself, your family, and respecting your emotional reality, I attacked and made your life worse. I made your body react in that same visceral way.

I felt entitled since facts were on my side, and I'll be honest, I felt morally superior, as I would never be desperate enough to put nicotine patches on my child, put mining chelator on their cereal, or use a product that promised a miracle cure but was in reality bleach.

We should be horrified at quack treatments and work hard to warn people, but we shouldn't do that on the backs of parents who've believed in the lies of the snake-oil salesman.

We sure shouldn't cloak ourselves in our perceived moral superiority and go on the attack, taking people apart, line by line, word by word, until they are left in a crumpled pile with the decision to either give up or get angry.

I've been on both sides. Despite the potential pain involved in being the one to make myself vulnerable and admit my humanity, I will always choose to be the first type of blogger rather than ever being the second type of blogger again. That doesn't make me morally superior, nor does it make me a saint. I just can't be that second type of blogger, knowing what it does to the very real people on the other side of the computer screen.

There has to be a way to have thoughtful dialogue where we can discuss how something we've read makes us feel without tearing the other person down, where we can work on our common humanity and frailties and find a way to build each other up, to soothe the pain, to lessen the distrust, to make all of us feel we really do have a place at the table and that our words, our realities, matter. Maybe that way, we'd have a chance to explore the places we feel most vulnerable and ashamed and let those things go so that we can move forward, cleansed.


Love is Complicated, But Not Really

Rick, Bobby, and I have been in a Fringe marathon the last month, rewatching the first three seasons and watching the fourth and fifth for the first time (well, mostly the first time--Rick cheated and watched the fourth season ahead of us and rewatched with us).

I love the characters of Fringe, the humanity, compassion, forgiveness they were able to show over and over, the opportunities to seek redemption that were offered, and the lack of judgment for the main characters. 

Walter was flawed, broken, and responsible for almost all the events he and the Fringe team investigated. Each of the characters in some way was clearly a member of the walking wounded club, and yet they kept walking, kept trying, kept going. Think, if you will, of Xena Warrior Princess. She and Walter both had done tremendous harm, were responsible for so many deaths, and both needed a companion, or two or three, to help them make amends.

And both sacrificed themselves at the end to make final amends for the harm they caused.

Love, the love for others, conquered all, allowed them to be softened, humbled, and to willingly give all.

In the end, both Fringe and Xena came down to that message: that while we can't undo the damage we wreak, we can make amends, and that sacrifice for love is what makes life meaningful and worthwhile. Their messages, told through fantasy/science fiction, are incredibly similar to Christ's message, which is after all, a pretty good one to live by: love one another, forgive one another, be kind, be compassionate.

The shows had a really high death count to relate those messages, and it's certainly a convoluted way to get that message out there, but when I think back to Xena, a show I haven't watched in more than a decade, that is what I remember--redemption, love, empathy--and kick-ass leather outfits and cool swords. Fringe had its share of leather, too, though not as revealing. And the same message.

Hey, guess what? So did Battlestar Galactica: redemption, love, empathy.

How many of the shows, the books, the movies that live on in us, come to mind in unexpected moments, that changed us in some small but fundamental way have the same message? Most, I suspect. It is the hero journey that Joseph Campbell spent a lifetime talking and writing about, and it's one we all walk, albeit without the leather, the swords, or the spaceships.


Conundrums Concerning Parenting a Disabled Adult Son

taken off facebook

Bobby will be 24 this year, so this photo and quote resonate with me on a visceral level.

I've just spent the last five weeks teaching freshman comp 1, for which I use disability as a theme. One of the topics we covered was inspiration porn, a construct that I continue to explore personally. When does a photo/meme slip from being an individual's way of expressing himself into being inspiration porn? When are motivational speakers, like Aimee Mullins, crossing the line from sharing insights they've learned about life and living fully to being the objects of inspiration porn as well as the facilitators of it?

I don't know. It's a murky gray area. If I think Aimee Mullins has done some extraordinary things and is an impressive person, am I guilty of using her as an object, of reducing her to inspiration porn? I don't think so, but if photos of her were passed around without identifying her, with someone else's words on it, and the goal of those words was to inspire able-bodied people, that's clearly inspiration porn. So some cases appear to be clear-cut.

What's not clear-cut is whether people who share these images are intentionally objectifying the disabled. I think best intentions should be assumed and then carefully raising the issue of how disabled individuals might feel about images of them being used to inspire able-bodied people to get off their asses is a possible educational tool to use. No judgment, just a "hey, have you considered?"

That brings me back, though, to the image at the top of the post and my concerns about raising my son. Am I still raising him? He's 23. I wouldn't still be raising an able-bodied, non-disabled 23 year old. Am I affording him the right to make his own decisions, to make his own mistakes, choose? 

Do I treat him like a child? Infantilize him? Deny him a chance to create his own future? All of these questions keep me up at night, tear my stomach up. Parenting a 23 year old with multiple issues including intellectual disability is a very ethically and morally challenging responsibility and the questions grow more complicated and the answers more nebulous and dissatisfying the longer we are on this journey.

I love Bobby so much that it often feels like a jagged knife cutting into my heart. I want to honor and respect him, who he is, where he is, and provide him with as much opportunity to control his life as possible, but practically, this is difficult as he requires continual reminders and redirection in order to accomplish basic tasks. He doesn't bathe without being told. He doesn't get dressed without getting told...he doesn't do most things without direction. We've tried writing it down. We've tried visual schedules. We've tried alarms and reminders on his iphone. 

Respecting his autonomy while helping him navigate daily demands is complicated. Maybe more for me than for him; each task requires multiple reminders. 

So, treating my son with respect for his adulthood while managing his need for assistance means I frequently feel like I'm walking a tightrope, and I am none-too-coordinated.

It weighs on me...this sense that I fail him at times, when I fail to foresee how he will interpret a reminder, a request, a suggestion, and it leads to frustration for both of us.

It weighs on me and is a deep source of sadness, this tightrope walking. I know it's my issue to resolve, and so I will keep working to be the best ally I can for my son, while I continue to help him build skills to advocate for himself, while I remind myself that he is a grown man and deserves the right to decide for himself what his life works like on the grand scale, as well as on the smaller scale of daily living.

He deserves no less than my best.


Oomphlessness and Pockets

Late last week, the girls and I were headed into town. I've had a rough three weeks, with three weeks ago being partially devoted to the colonoscopy and its prep, the next week with a nasty stomach bug that covered almost three full days, and this week...don't you know I ended up with food poisoning on Monday and spent many painful hours thinking the previous two weeks looked like a cakewalk. I'll be honest, I'm still puny, even now.

At any rate, back to the trip to town with the girls...and the concept of oomph, which I had the fun of explaining to them, as I commented as we pulled out the driveway that the little bit of oomph I had had already deserted me and I hoped we could get done what we needed to. We had to abridge the plans but we got the majority of what we were after, and I got to hear Rosie tell me repeatedly through the super Walmart (we went to our newest one which is bigger than the one we usually go to) that her oomph was gone. She would dramatically drape herself across the shopping cart and go limp, sigh loudly and deeply and say, "My oomph is gone. All gone."

Tell me about it, sister...my oomph has not only left the building, it's not even going to voicemail, if I can be allowed to mix metaphors.

What's odd, or interesting, at least to me, in all of this lack of oomph, are the pockets of oomph--the moments where I find myself looking around and going, "Holy shit, this is nice. Look, I'm walking with something like energy, maybe even a bounce in my step!"

If you go around long enough feeling completely depleted and dragging yourself through the motions (and at this point I would concede that some of my lost oomph might have something to do with depression as much as it has to do with the cluster of diseases, syndromes and pains in the ass that make my life challenging --health pain in the asses, not people pain in the asses--although--and yes there should be hyphens there but screw it); anyway, if you do that long enough, those moments where your body and mind are functioning somewhere close to right are shocking in their intensity and vividness. You can get shit done. I spent last Friday able to clean ALL DAY. I got stuff organized. It was sublime...a rare treat. And then...boom.

That return to the gray, to the barely able to muddle through, is a slap, a push, a shove back into the oomphless that would, if you were able, lead to serious anger and fist-waving but doesn't because you are oomphless and don't have the fist-waving to spare.

But I'm going to hold onto the fact that there are those pockets of vividness and oomph and hope for more, because the hoping makes the gray less gray and the oomphlessness less oomphless.