July 2010

Climbing Out

by Mary on July 30, 2010

(Hello people! We are sort-of alive!)

The night before we went on vacation, the J-man hit a milestone: he learned to climb out of his crib. He learned it so well that he did it until 3 AM, when he finally collapsed into sleep… and then so did we, because he hasn’t yet learned to climb back in. (I was up 3 1/2 hours later to get ready to leave, and let me tell you, driving a 7-hour drive that turned into a 9 1/2-hour drive with a crying baby on 3 1/2 hours sleep is bad.) The way we found out he knew how to climb out of his crib? Tim turned on the video monitor to take a last look at the J-man for the night, and said, “Where’s our son?” We searched FRANTICALLY, and ended up finding him curled up in his closet, door closed, stuff piled on him. ACK!

So now we have this problem – he likes his crib, and he likes sleeping in it. But he also likes climbing out, and then can’t get back in.

Scene: Bedtime for J-man

Having just closed the door to the J-man’s room after setting him in his crib, Mary runs into our bedroom where the video monitor (very old, WIRED, monitor is the size of an old Mac Classic and sits on Mary’s dresser) is already turned on. As soon as Mary sees the J-man hike his leg to the top of the crib side, she RUNS back to his room and opens the door…and the J-man plops back down. *cue innocent whistling sound effect* Mary says “Good Night” and closes the door.

The J-man makes lots of noise, rustling around in his crib, standing up, and propping the same leg over the side of the crib. Mary RUNS back to his room and opens the door… and the J-man plops back down. Mary says “Good Night” and closes the door.

The J-man looks all around, trying to figure out how Mama knows he is trying to get out of the crib. He stealthily stands up, quietly eases his leg up over the side of the crib… and BAM – Mary opens the door! The J-man plops back down innocently, and looks over as if to say, “Who, me?” Mary says “Good Night” and closes the door.

Repeat one of those 3 vignettes.

End Scene: J-man is sleeping

Of course, the whole time I’m trying not to laugh out loud (we do snicker quietly), because the J-man really is confused as to how we know when he’s climbing out.

We’ve gotten better at it. Tonight I only had to run in 3 times total. (Of course, now that I’ve written this, tomorrow night I’ll be there for 2 hours running back and forth.)

We still haven’t decided whether to just change the crib over into a toddler bed (but the J-man tends to fall out – not that falling out wakes him!), try a crib tent (he’s almost 5; I think he could tear one of those to pieces the first night), or just make the jump to a big bed (again with the falling out issue). (Also, could I write more parenthetically?)

In the meantime, I’m getting my exercise just running up and down the hall.

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We’re All Afraid

by Tim on July 29, 2010

During The Great Burnout, I dropped off my normal reading of autism-related RSS feeds, Twitter, and pretty much everything else. Clearly I’ve missed out on a great deal of what’s been going on personally with our online friends, and that’s saddened me. I look forward to reconnecting with the world.

But so many of the other more news-related feeds and sites about autism issues, debates, and such remind me more than ever of daytime soap operas. You can skip weeks and months of episodes, come back, and in five minutes pick right back up where you left off. It’s like the plot never goes anywhere; we just circle back and around again.

But I’m not talking about things we fight for together like mandates for autism coverage in health insurance plans, full funding for special education and IDEA, disability rights, and so much else. In these efforts, we join together and continue to make steps – incremental or giant leaps – forward.

It’s in those other areas where we fight amongst ourselves that I am completely tired of it all. We fight about therapies, causes of autism, diversity, ‘cures’, and on and on, and I begin to wonder whether we’re doing so not to seek truth or discover what’s best for our children but to just prove which of us are right. Regardless, in the process, we are practically killing each other.

And the giant, pink, flashing, neon elephant in the room is this, and I think until we really get this, we’re going to keep falling further into this hole.

You’re afraid. I’m afraid. That parent over there is afraid. The parents in your child’s class are afraid. The parent who believes vaccines cause autism is afraid. The parent who can quote chapter and verse that they don’t is afraid. The parent who goes to a DAN doctor is afraid. The parent who thinks biomed is a waste of time is afraid. The parent seeking a cure is afraid. The parent who thinks a cure would take away their child’s identity and rob society of something essential is afraid. We are all afraid. And the fear has gotten to the point where it’s tearing us all down.

Why are we afraid? Every minute of every day we devote ourselves to our children. We are trying to help them walk up a mountain so high that we can’t even begin to see the top of it. And we are afraid that, even in spite of all of our best efforts, we might fail them. We are afraid that our absolute best might not be good enough. We are afraid that things might never get easier for them. We are afraid people will reject them. We are afraid that they will not find love nor someone special to love them in return. We are afraid they will not be able to graduate or find employment or live independently. We are afraid they will suffer or live forever in a constantly hostile world. We are afraid that our bodies and souls will give out and explode because we are so tired, stressed, and desperate. We are afraid we will die and no one will take care of our children. We are afraid of all these things and ten thousand more.

The stakes for each of us are incalculably high. We are talking about our children, our beloved. To fail them is the worst thing we can imagine, but because we can imagine it, we are understandably scared out of our minds.

Every time we want to bite each other’s heads off on some issue, before any other words come out of our mouths, we should be required to say, “I’m afraid, and you’re afraid. Where do we go from there?”

I hold several opinions very strongly. I think some perspectives are plain wrong. That is as much my right as it is for you to think I’m completely full of it. Admitting we’re all afraid doesn’t release us from the rigors of science, ethics, humanity, compassion, and respect that should inform everything we do. But you know how awesome and powerful we can be together when we’re all working on the same side, and you know what a nightmare it can be when we come at each other with the claws out.

If there’s one thing we all have in common it’s the things we’re afraid of. When we turn our fears into passionate energy to advocate for our children, we are unstoppable. When those fears cause us to strike out in anger, we tear each other down. When they consume us, we cannot make good decisions for our children, deal with all the people and institutions we have to work with every day, or make sense of all the information that bombards us.

There’s nothing at all wrong with being afraid; it’s when fear severely compromises our ability to parent and advocate that we’ve got real problems. And there’s nothing at all wrong with spirited debate; it’s when we tear each other down day after day that we lose.

Even if the person you’re talking to won’t, let’s all try to practice some measure of compassion. And let’s practice it toward ourselves too. Lord knows I need to because I’m as guilty of all this as anybody, and my anger was eating me up from the inside. If The Great Burnout and the time away taught me anything, it’s that I need a new perspective. I’m still very tired – and I know you are too – and I don’t feel like spending my limited energy on anything that’s not working for my children and the positive change they need in the world in order to succeed.

So before you or I jump in the trenches again, remember Plato’s words:

“Be kind, for everyone you meet is fighting a hard battle.” – Plato

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by Tim on July 27, 2010

Athletes call the moment when they completely run out of fuel and their bodies shut down ‘bonking’ or ‘hitting the wall’. But it doesn’t just happen to athletes; it happens to us, too.

For the past few weeks, I think even those terms don’t do justice to how I’ve felt. It’s been like driving into the wall, having the wall fall on top of me, and then just staying buried there. Though for such a simple-sounding word, I think ‘burnout’ covers it pretty well. And I’m ready to be done with it.

After your body uses up its normal exercise fuel, it starts consuming less efficient sources of energy inside you. Your body goes through whatever else it can find to keep going, even up to consuming itself. Even with all that, though, you can typically cease your efforts for a bit, eat something, regroup, and start again.

Burnout in daily life is not only a complete lack of energy but a lack of any fuel to restart again or any good way to get it. Slowing down, taking a breather, eating a little, and trying again tomorrow isn’t a recovery plan for burnout; it’s a joke. When a body is malnourished and all the carbohydrates and fats and whatever else are used up, your body starts consuming tissues and other cells. It will literally eat itself alive until there’s nothing left in an effort to survive. I think burnout is the psychological, emotional, and spiritual equivalent of such malnourishment.

Burnout turns you into a complete, selfish ass because your total lack of everything causes you to turn within yourself in search of something – anything – else to burn. It’s a vicious cycle, a black hole – the worse it gets, the worse it gets still. You eat yourself alive until you start feeling like just a shell.

This is how I was getting. I won’t speak for Mary, but I imagine little of what I’m saying would differ from how she’d describe her life lately. This has been a rough year for us – a lot of death and dying, health issues all around, the constant demands of parenting that rarely let up for a minute, all sorts of work pressures, and the constant refrain of autism that weaves through so much of our lives.

Just as bad is that I was losing patience and compassion with everyone and myself. The only struggle I could see and feel was mine. I couldn’t step outside myself even a fraction to empathize with what the kids or Mary or anyone else in our lives were going through. I was losing all appreciation of the wonders and joys in my own house, the goodness of people, all the living saints we spend time with and read about and interact with online every day. I had withdrawn into myself. I don’t say this to beat myself up. I say it as a realization that I was in a place I couldn’t remain so maybe some of you will see it in your own lives.

While we weren’t completely sure Dale Jr. was ready to be away from us for a few days, we knew that we were at a desperation point of complete exhaustion. We decided to take my older sister up on her offer to watch the J-Man and Dale Jr. for a few days while Mary and I went away. People suggested all these places we could go and all the ‘fun’ activities we could do. But all of our days are already doing one thing after another. All we wanted was to become unconscious for a few days.

We found an isolated cabin in the woods away from people and the Internet and just about everything else. It did have a hot tub, though, which was an absolute requirement. Groceries and whatnot were nearby when we needed them. It had enough amenities for us to be comfortable. We were only an hour away from my sister’s family if something did come up.

And there we stayed for a week. I slept 16 hours before the first day was done. I can go a good part of a week without getting to sleep that much. After a couple of days of sleeping, reading, eating, hot tubbing, sleeping, movie watching, and sleeping, I began to feel the frayed ends of my nerves knitting themselves back together again a thread at a time.

I finally got into a state where I could start to look outside myself again. I thought about all the goodness I’ve received or witnessed these past few weeks, even though at the time I was too drawn into myself to really appreciate it. I reflected too on the hardships of others, most unfair, some tragic. I had been off absorbed with my own wounds to see and understand before.

There are all of the J-Man’s teachers and therapists at school who work so hard for him and generously share so much of their expertise, wisdom, understanding, and kindness with us. They worked to get him into a two-week camp for autistic kids at a local YMCA so he could have structured activity in a supportive environment with other kids, and we could have a couple of weeks during summer break where we could get some stuff done during the day. The camp staff were so wonderful. They did such a great job with our J-Man, guiding him through a completely new experience (his first time at camp) with a much different schedule than he’s used to. By the start of the second week, he really started to get the hang of things and enjoy himself. And the camp staff loved him so much.

Obviously, family have also pitched in their kindness to help us out lately. Mary’s parents kept the J-Man for a few days, and my sister had them for our week away. These breaks are lifesavers for us. We need time to recharge, and there just are not many people with whom we could leave either of our kids, let alone both of them.

There were also painful, and even tragic, things that happened recently to friends of ours. One of the J-Man’s classmates from last year, his family lost their home and everything they own to fire. They are good people trying to do the right thing; they struggle financially already. People like them should be exempt from things like this. I cannot even begin to imagine how awful this was and still is for them.

For me, what came as grace was the response that poured out to help them get back on their feet again. The word went out about their immediate needs, and within a couple of days those more tangible needs were met by numerous people who answered that call for help. The word went out again for basic furniture and household items they’d need to move into another trailer. Within a couple more days, all the needs on that list were fulfilled. To witness all the kindness and care that poured out to this family injected a dose of new life into me. It reminded me of the fundamental goodness and generosity of others.

And this is one of the fundamental truths we hopefully learn as parents of autistic children: There are more of these good, kind, generous, skilled, loving people out there looking out for us, helping us, willing to give their time and talent to us than we can count. Sure there are always some people trying to get in our way, take stuff from us, and make our lives miserable, but I’ve found they are by far the minority. Pulling back for some perspective has reminded me of this.

As our vacation neared the end, I could feel my pulse quicken and my breath get shallower and more rapid. I knew it was fear, fear of going back to where I could be hyperstressed and exhausted and burned out again. But at least I know getting a few days away will be an option for us again down the road. I know that trying to focus more intentionally on all the great people around us opens me up to being refilled by their kindness and understanding.

And I know all that is good and perfect in my life far outweighs the challenges, frustrations, and fear. Perhaps I wrote all this to get to that one sentence, but maybe it’s the one I need to walk away from this vacation with and carry around with me from now on.

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