Guilt

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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Our Trip to the Dentist

by Tim on July 31, 2009

Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals:

  • His teeth got cleaned.
  • He doesn’t require any additional dental work.
  • The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs.
  • We didn’t freak out too many other children in the office. (Yay for the separate room!)
  • He still agreed to live in our house after it was over.
  • No one sustained any major injuries.

I tell people, to an outside observer the whole thing looks awful and probably something akin to torture. To us, everyone got through it, we made some progress, and at least it was better than last time.

We liked our new dentist, too, which was an unknown to us beforehand even though they came recommended to us. The office was smaller, so there weren’t dozens of people and lots of noise and overstimulating crap in the waiting area. It was all fairly chilled out really. I particularly like it when the dentist and hygienists are calm and of even temperament no matter what happens during the cleaning and exam. I think the J-Man could have sprouted flaming arms and horns out of his head and it wouldn’t have affected them any.

We, of course, had to hold him down for everything. I had his torso and legs and occasionally a shoulder. Mary had arms. The hygienist had his head between her forearms and braced against her body while she worked. The fact that she got that spinning cleaner/polisher thing in his mouth and cleaned all of his teeth was pretty amazing, though I know he was in terror pretty much the whole time. [Insert parental guilt here.]

We got through it in 10 minutes or so. When it was done, he calmed down almost immediately in my arms. His ability to decompress after something that stressful is quite a testimony to his growth and general bravery. I can’t imagine much that would be harder on a child with serious oral sensitivity than to go to a dentist. It breaks our hearts to have to do this twice a year. Our hope is that eventually he’ll get more or more tolerant of it if we can set good dental habits and lay the groundwork now.

All that holding him down is not only emotionally painful, it’s also physically rough. Last appointment six months ago, I pulled something in my back and partially sprained my wrist from holding him. Last night, my Achilles tendon hurt (from bracing my feet on the floor) and now my low back feels like I did some sort of marathon weightlifting in the gym or something. Well, Ibuprofen and an ice pack should have it back toward normal in a day or so.

Good news is that his teeth are excellent! I know a lot of parents of autistic children struggle with their dental care. It took us forever to get teeth brushing incorporated into our routine. If we could go to the dentist everyday (perish the thought), he’d eventually get to a point where he’d be much more tolerant of it, but obviously there’s no way in this world that would happen anywhere other than our nightmares. But we can do things that will hopefully reduce his oral sensitivities – something we’ve been working on for over three years now.

We appreciated the calm and positive attitude they had and the respect and sensitivity they showed to the J-Man. So we’re pleased we made the change in dentists and will go back in six months to do this all over again. Each time it seems to get a bit better, so here’s hoping.

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Time For Our Semi-Annual D-Day

by Tim on July 29, 2009

Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was.

Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental practice.

Were the dentists nice? Yes. There was one doctor in particular we really liked, in no small part because his wife used to work for the doctor who diagnosed the J-Man with autism, so there was awareness and understanding all around about our situation. The problem was, there was no way apparently – at least not for us – to request which dentist we got to see. (I think their practice currently has 4.) The other dentist we saw was OK enough. I thought the hygienists pushed him pretty far, but I kinda get the philosophy behind it. It seems like we weren’t allowed to ask for the one we really liked, and that was irritating.

For us, the decision to fire them was two-fold.

1. All special needs kids are seen only during the noon hour, which not only makes scheduling a nightmare and interrupts his school day (not like we can go back to school after all that), it feels like yet another example of us being segregated from the world. That said, I do understand one of their reasons behind it. Their staff shifts overlap around noon so they have more hygienists there who can gang up on the kids – so to speak – and provide additional support. And really I could live with this if it weren’t for the crap in point #2 below.

They really stretched their luck, however, in that we were seen well over 30 minutes late for our 12:00 appointment last time. Please do not make autistic kids wait that long in a crowded, noisy, pediatric dentistry waiting room with enough noise, TVs, fish tanks, video games, and other insane stimuli to drive us all batty with nothing he could actually do except wander in and out of the chairs like some obstacle course.

So they reserve this time for special needs kids, but can’t actually see any of us anywhere near on time. Well, thanks for nothing.

However, all that alone probably wouldn’t have driven us away.

2. It was the attitude of their staff that did it. They acted like they were doing us this huge favor to schedule us in the first place. Once we got his school schedule for the fall figured out, we realized his originally scheduled appointment fell on his second day back after this long break. So we called many weeks ago to reschedule since we knew he’d need consistency at school after this long break. It’s not like we were set on getting an earlier appointment. We actually asked for an appointment during his next break two months after his original appointment. (Reminder – we called and asked to reschedule weeks ago.)

“I’m sorry. We don’t have anything available until next year.” (insert attitude here)

We know [expletive expletive] well that they have appointments. Just not for him. Before we ever went there, we got in with maybe a couple of weeks notice. Now that I’m sure his file is painted with a giant red flag – or what I’ll call “The Scarlet A” – it’s a six-month wait.

So, we asked around and found a new, smaller dentist practice. Yes our appointment is still during the noon hour, and presumably for the same reasons, which I don’t have a problem with when combined with a respectful attitude toward our kid. At least they were up front about why and were polite and welcoming, and they were able to get us in quickly with no fuss. We’ll see how this carries over into the actual appointment.

Just to be clear – no I don’t expect anyone to roll out the red carpet for us. I don’t expect sympathy or special treatment or anything. But I do expect the J-Man to be treated with respect and as a child with feelings and integrity regardless of whether he can talk to you about them or not. He is scared to death of having his mouth worked on – and we feel like crap as parents enough as it is for putting him through that – and if you’re not understanding and sensitive to that about him, you can go to hell. And if you want our business, don’t act like you’re doing us favors. Nobody is that good.

Enough ranting. Gotta go practice my restraint holds and find something to wear to protect my more sensitive bits from injury again.

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Mama Guilt from Listening to “Experts”

by Mary on July 14, 2009

Background info: we’ve pulled out lots of the J-man’s old toys for Little E to play with/watch lately. (Little E won’t be little for much longer. Maybe we should just call him Dale Jr.)

When the J-man was about 21 months old, we had a “full evaluation” from the county. They came to our house – a doctor, a developmental therapist, and one other therapist person. It still rates in my mind as one of the hardest days we’ve ever had, and I’m including when we all had the Norovirus and the J-man was hospitalized.

The things that stood out were this:

1) the doctor YELLING at the J-man when he wouldn’t comply with the tests. Hey, I wouldn’t want to pick up your stupid dolly either if there is a cool car with spinning wheels available. (We heard through the county grapevine that the doctor was eventually reprimanded because of his behavior during that evaluation, to give you perspective.)

2) the J-man wowing them with some of his skills

3) the J-man NOT wowing them with skills it wouldn’t have occurred to me he should have been able to do at that point.

4) the way everyone danced around the word “autism” until I flat out asked them if that was what we were dealing with. (“We don’t really know at this point, but don’t think that’s it.”)

and

5) the way the evaluators made us feel like the world’s worst parents for allowing the J-man to play with the toys we had out in the living room. No kidding! They told us that the reason he was testing behind in several areas was because his toys weren’t advanced enough. We were holding him back! It was our fault! If we had just gotten him better toys, he would be fine! (All of those toys were in fact made for kids up to age 3, but I digress.)

That night (after I cried), we packed up most of the J-man’s toys and put them in the attic. No more “World of Learning;” no more “Mr. Star” (just a fabric star that plays music); no more thingie where you put the ball into the tunnel and it made music play. In their place, we put out other things, but those were toys that the J-man loved, and he looked for them for a long time afterward.

And now that some of them are back out (World of Learning and Mr. Star), he plays with them again. He’s SO happy to see them. He actually plays with them quite differently than he did back then. Huh… could it have been the kid’s developmental stage and not the toy?

And when I see his excitement over shaking Mr. Star to make him play for Little E, I get teary eyed… and I get angry. Oh yeah, the Mama Guilt from listening to “experts” will get you every time.

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The 439 Stages of Grief

by Tim on January 6, 2009

[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]

The 439 Stages of Grief

Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.

Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.

They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.

They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.

We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.

Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.

But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.

This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.

And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.

Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.

And this is the way it begins for all of us, with one, single, determined step.

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Learning How Not to Say “I’m Sorry.”

by Tim on October 26, 2008

When you’re around many other autistic kids besides your own, a whole array of behaviors don’t faze you, assuming you even notice them at all. If someone’s kid runs around in circles flapping their arms, about all you’ll get from me is a smile. If another kid goes stiff as a board and lies face-down in the mulch yelling and refusing to budge, unless the child is going to harm themselves, I hardly pay it another thought, or I think “yep, mine does that.” If a child bolts for the exits, I just non-chalantly hold out my arm and turn them back around. Our radars are tuned in for any unsafe behaviors, but beyond that, most of us are pretty “whatev” about the whole thing.

There’s a whole shared understanding among parents of autistic children. We’ve been there and done that; there’s no reason for you to explain or apologize or do anything else for that matter.

Recently I was talking to a parent when their child suddenly went into a full-blown, 9.0 on the Richter Scale meltdown. The child started flailing and hitting to the point where injury to self and others was a real possibility. I did what I normally do in that situation – stand ready to help intervene if more hands are needed to prevent those injuries from happening. I’m 225 pounds and 6′ 3″ with enough strength and leverage and a fairly high pain tolerance, along with enough know-how at this point to usually understand how I can help in those situations if needed. Not surprisingly, parents are pretty good about knowing how to de-escalate these situations with their own children, and in this case in a minute or two things were back to relative normalcy.

Still, this particular episode stirred something unusually strong in me, and I had to go sit down with it for a few minutes and figure that out. People who know me well know that I need to sit down and process certain things or else I just carry them around with me forever.

I went through a list of things to see if I could figure out what was different than usual, as typically these situations don’t faze me much. Was I judging them? Never crossed my mind. Discomfort about what the parents of non-autistic kids who saw all this were thinking? Nope. I’ve pretty much stopped caring about that. Feeling the need to jump in and fix it? Yeah, to some degree, but that’s just how I can be sometimes. But I knew this parent knew their child way better than anyone else, so that’s a fleeting thought I wouldn’t have acted on unless there was an imminent, real physical danger there.

Was I glad it wasn’t my child doing it? Oooo, that’s a hard one. That’s one of those issues we parents of autistic children don’t like to talk about. It’s almost a taboo subject. Sentences like “I’m glad my child isn’t a headbanger” will slip out in conversations and it’s common for the speaker to instantly look mortified. It’s also common for the parents they’re talking to – assuming their children aren’t self-injurous – to nod quietly and inwardly agree. It’s just that we can’t imagine what that would be like. J-Man does little more than slap himself on the head sometimes.

It’s not judgment really, but this unfathomable weight that we can feel pressing on us when we try to imagine what it’s like to have a child who repeatedly tries to put his head through a wall. You read about the autistic child who blinded himself because he continuously jabbed his thumbs into his eyes. I hear those stories and simply have no idea what to do with those kinds of unimaginable emotions.

What do you do when you see a parent who would stand in front of a speeding freight train, dig their feet in the ground, and dare the train to hit them in order to protect and save their child, and then see that same parent suffer utter helplessness and desperation at being unable to keep their own child from such wild-eyed, primal-feeling torment? Or worse, be unable to protect their own child from the next horrible injury that comes when their head strikes a stud in the wall this time rather than the empty space in between?

All I want to do is grab that parent and that child in my arms and say, “I’m sorry. I’m so, so sorry.” over and over again until it all goes away. That’s when I figured it out.

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Fun With Family

July 21, 2008

The J-man and I were at my parents’ house this weekend. You may not have heard my sigh of relief when I parked the car in the garage on Sunday evening. I’m sure it only echoed through three or four states. Besides the lack of sleep for both the J-man and me, there were the [...]

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