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Trying to Get Perspective

by Tim on November 29, 2009

These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.

I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.

It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)

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I wish I had some brief, non-whiny-ass way of talking about this, but it’s just going to be what it is. This is a subject many of us avoid because we don’t want others to think we’re weak or talking negatively about our life as parents. But tonight I feel like being honest about it.

Someone once gave me the most appropriate term that I think exists for how I’ve felt the last few days.

I am bone-weary.

It’s a good thing I recently read an absolutely brilliant blog post by Rachel Coleman (aka Rachel of Signing Time!, also aka J-Man’s Secret Crush) called Strong Enough to be Your Mom. I highly recommend you go and read her moving story.

The day after the J-Man’s annual pediatrician’s visit about two weeks ago – where I had to carry him around for an hour and do some awkward holds during the exam – I started to feel a building pain in my low back. And it just got worse and worse. Within hours of when it started, it got to where I couldn’t bend more than a few degrees from vertical in any direction. I couldn’t sit and I certainly couldn’t sleep. I took some ‘real’ pain pills (which I only do when it’s really, really bad), and I might as well have been eating candy.

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Recognizing Your Own

by Mary on September 4, 2009

Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!)

While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke away from his parents several times and ran, not looking where he was going, just running in a desperate attempt to not have to come into the office. At one point he tripped (the sidewalk turned sharply and he didn’t) and went head-first into holly bushes. Holly bushes. So then he was scratched and bleeding. The parents were doing their level best to get him inside.

Tim and I looked at each other and nodded. Boy with autism. We can pick each other out now.

We learned that the parents had given him a massive dose of Ativan to try to calm him, because he HAD TO come in and get a tetanus shot. He needed that shot. The Ativan didn’t work. (As we were waiting to get flu shots while we were there, we heard a loud cheer for him, because they had gotten him inside, and he had received the shot… so they did finally get him calmed enough.) The nurse didn’t seem surprised that we knew the child had autism – she said it was pretty common for parents of children with autism to be aware of others.

There were parents there in the waiting room judging that boy’s parents. I could feel them and hear whispers (not what they were saying, just the whispering voices). And I knew they had NO IDEA what those parents’ lives were like.

And I could only watch, wondering if we were going to be those parents one day. Right now, the J-man is small enough that we can overpower him (see also: holding him down for shots, and holding him in our arms before and afterward), but there will come a day when that can’t happen.

I don’t have a nice way to tie up this post. There’s no “all’s well that ends well.”

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What’s So Different About Me?

by Tim on July 25, 2009

Slight change of plans this week as we went to meet the J-Man and Mary’s family at the beach a day earlier than planned. We stayed a couple of days and then came back home – and we let the J-Man stay there for the rest of the week. He was having so much fun at the beach that we couldn’t make him leave yet. That was more important than our uneasy second thoughts, which of course are more about us than him.

He comes home tomorrow, and it has felt like missing part of my arm for most of the week. It has been good for us to have a little vacation (or stay-cation where we really played catch up on work and the house for most of the week), but God do I miss him.

It was something to see him lead everybody he could to the back door of the apartment where we were staying in hopes of finding anyone who would take him down to the beach – regardless of the time of day or night. It was really sweet when we got there that he led me down to the beach, just the two of us, like he wanted to show me this amazing thing he’d discovered. I swear it even sounded like he was singing to himself while we were walking down the beach access ramp.

We watched him walk up and down the beach with Mary’s mom, stick his legs a little bit in the surf, and get some sand on himself. They drew literal lines in the sand to visually show him where he couldn’t go past on the beach, and for the most part, he followed those boundaries. (Good thinking on their part – visual cues!) Admittedly he was very little the last time we went to the ocean, but he was so much different this time. Clearly he loves the beach and the water. It was like watching a different kid.

There was only one problem. Most of this happened while I wasn’t around. Whenever he saw me, he ran up to me, held his arms up insistently and sometimes a bit frantically, and wanted me to hold him, to the point of just about having to carry him everywhere. Yeah, I’m a softy toward him a lot of times, but there was something else going on here that I’ve yet to figure out.

I’m a believer that in kids who are minimally or non-verbal, behavior itself is communication, and one of the most essential forms of it they have to draw on. He was trying to tell me something, seemingly very important, and I wasn’t (and still am not) sure what it was. Every time I was in the room, he was like this.

Was it his reaction to being apart from us? Perhaps. Was it more than that? Maybe, and I think likely. Was he in some sort of distress? I don’t think so since he was otherwise having a very good time. This has been really bothering me this week. What all is he trying to communicate to me? And why me specifically?

We wanted to take him to the North Carolina Aquarium while we were there, which is about 5 minutes from where we were staying. I thought he might enjoy the fish and the ocean colors and all the water, but all he wanted to do was cling to my neck. If I tried to put him down, he either did these odd movements around me and refused to hold my hand or just turned around and tried to climb back up me. I’m not even sure he registered any of the fish and ocean exhibits. I felt really depressed by the whole adventure, of course because I wanted it to go a certain way and it didn’t (again, my emotional baggage and not his). I felt like the guy who’s clueless and doesn’t get the obvious message blaring right in front of him.

We also tried going out to eat with the family, and he refused to be anywhere other than on my lap. He was pretty miserable the whole time. He had gotten up really early that morning and was very tired, but it was still uncharacteristic of him.

I know he missed (and still misses) us, and we certainly miss him. I just feel like there was something more going on. Around others, he’d do his thing on the beach, walk up and down it and play some in the water, play out in the backyard of the place we stayed, let others read him stories, and generally be himself in the ways I’m used to seeing him when he’s in one of his more calm and sensory-balanced states. As soon as I came into view, though, everything about him would change.

If all behavior is communication, what’s he really trying to tell me? I’ve been carrying this question around all week, and I don’t feel any closer to an answer.

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Today in our chiropractor’s office, there probably weren’t 10 total people in the room – including the chiropractor, his office manager, and us – but an interesting convergence of experiences made itself known. It’s still noteworthy to me, but I’ve found – much to my pleasant surprise – that things like this really aren’t that uncommon.

During the short time we were there, we shared a nice conversation with this wonderful older woman whose 50-year-old son is autistic. Her voice rose from a deep well of experience and wisdom, and came with a reassurance to us autism newbies that everything will turn out in wonderful ways we can’t yet imagine.

We already knew the office manager’s teenage daughter is autistic, and it’s been a joy to talk to her and swap all sorts of great stories. Talking to other parents with our shared experience is just so much less work than talking to anyone else. We can be ourselves and finally have real conversation. The fact that her daughter is much older than the J-Man also allows us to learn from someone else who has been down the path we’re still new to.

Then we met a man who I guess is roughly 50. He gave us the name of a woman very experienced with autistic people who he highly recommended if we needed someone more expert than a regular child care provider during the J-Man’s school breaks.

I find it noteworthy in general when I meet someone who strikes me as kind, thoughtful, caring, and completely without pretense. I sensed all of that in him before he got around to saying anything about himself. Then when he said he was higher-functioning autistic, it filled me with a warmth I needed today. I thought about the J-Man offering generous help like that to another family 50 years from now. Clear and caring words from a good heart. It gave me the sort of long-range perspective I need sometimes.

I know they say you only really become aware of something when it’s important to you – like when you notice lots of blue Honda Civics everywhere as soon as you want to buy one. I know these particular people and many, many more like them were out there before we started along this path and surround us in varying degrees of anonymity each day. Regardless, today reminded me that whether your child is autistic or you are autistic yourself, you are never alone.

We are indeed surrounded by so great a cloud of witnesses. We may think ourselves strange, but we are never strangers to each other.

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Not just another walk in the park

by Tim on April 24, 2009

Today we went to a park with the J-Man’s classmates and their families. It was an absolutely beautiful day here, and there were a lot of other families there soaking it in with us. The J-Man loved the swinging – as always – but he really didn’t care one whit that he needed to share the swing with other kids. I took him out of the swing, and the rest of the couple of hours we were there went completely downhill from there.

None of the other playground equipment (and there’s a lot of cool stuff there) mattered to him; the paved nature trail had zero appeal; I could barely get him to sit on the bench and eat anything. He walked with one of the teachers along the trail for a few minutes, but after that, it was seemed pretty much like one unending melodrama with some occasional fits thrown in for good measure. If I wasn’t holding or carrying him, he kept whining and crying and even sometimes screaming while trying to climb all over me.

If this were a one-time thing, I could deal with that. But nearly every time we go on anything resembling a ‘play date’, it goes down like this. He’s big, he’s strong, and when he’s singularly focused on something, he’s almost immovable. When he’s in social situations, all that gets amplified 10 times. Overall, it’s getting bit by bit easier to reel him back in when he’s overloaded, but in situations like today, once he’s lost, he’s pretty much gone, and it feels like the battle for survival is on.

It’s not any one single event like today that gets me; it’s the cumulative effect of them over the weeks and months. It makes me viscerally aware of how hard things are for him. I know that sounds ridiculous given our daily lives and our constant awareness of where his challenges are. But after a while, you get into a groove, you have a great week of progress, you start feeling on top of things, and then you get one of these giant reality checks.

We got home, decompressed a little bit, I ate, and then I took the car keys and told Mary I was going to run errands, despite the fact she wasn’t officially off work for two more hours. Yeah, I was a total, selfish ass. But I felt like if I didn’t get out of the house by myself right then, I was going to completely fall apart.

I spent the rest of the day trying to figure out what my own personal meltdown was about. This is about all I could come up with – I want one, normal, somewhat calm play date where I can spend more than 10% of my time sitting down and watching him play from a bench while he explores the different playground equipment and can play for a few minutes at a time on his own. I could talk to other parents for a couple of minutes without having to be holding him while I do that. The rest of the time I’d be overjoyed to guide him through the various parts of the playground and explore them with him.

I guess in other words, I want a ‘normal’ day at the park like the other parents get. It’s selfish, unfair, and short-sighted on my part and completely missing the larger point of life, but for the moment, I don’t really care.

Right now, these sorts of outings just feel like physically-exhausting ju-jitsu. Some combination of him yanking on my arm or some wrong move on my part pulled something way out in my left shoulder. If I turn it wrong, it feels like someone is stabbing me. Really, this is probably just the latest of a half-dozen other times I’ve pulled that same part of my shoulder over the last couple of months. It’s starting to become like the ‘magic thumb’, my now almost unsprainable right thumb after having been injured so many times.

I know my nearly unbroken string of 18-hour days going for weeks now has left my body susceptible to these sorts of things. But I realize I also tend to avoid these sorts of social/play opportunities because they end up being so physically – and of course, mentally and emotionally – hard for me.

And I know all this is really about my own personal and emotional stuff, and it’s something we as parents have to be aware of and taking steps to work through, which I am. This is a marathon, and marathoners know about taking care of their bodies and minds and pacing themselves through the miles. I’m completely aware that I’m terrible at that, but that’s an issue for another day.

To keep with the running metaphor, I’m pretty much in a constant state of bonk these days. I realize we have a lot going on and a baby due any minute – enough to peg out anyone’s engine – but like we do with the J-Man, sometimes you have to sense how things are starting to go out of control and take steps to calm life down before everything melts.

The old saying “it’s a walk in the park” is meant to express that something is both easy to do and has an assured outcome. If there’s a metaphor farther away from what today felt like, it’s hard to imagine what it might be.

I’ll do my self-indulgent, pity thing a while longer and move on. Writing this out helps. I still do dream of one of those walks in the park, though.

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Jumpy Jumpy Jumpy! No, I’m not trying to go into labor…

March 27, 2009

Today, instead of the (incredibly anxiety inducing for me) horseback riding the AU classes were supposed to go to, we went to one of those Jumping Inflatable places. (Weather… what you gonna do?) I took the J-man, because a) Tim was working on the flooring, and b) his teachers promised to corral him for me. [...]

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Bragging While Dragging

February 26, 2009

This cold that’s going around like wildfire here has knocked me flat most of the week. I’ve been dragging along OK, but any ambitious plans – blogging or otherwise – are just toast this week.
But I will take a minute to brag on the students of all three of the autism classes at our [...]

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