Tag Archives: Disability

Five Years with Autism

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Five years.

Sixty months.

Two hundred and sixty weeks.

One thousand, two hundred and eighty-six days.

That’s how long we’ve been living with autism. Actually, scratch that. We’ve been living with it for fourteen years, but we didn’t know what it was until five years ago. We were a little slow on the uptake.

Five years is a kind of a milestone, isn’t it? So naturally, I did a bit of looking back at both the highlights and the lowlights to see how far we’ve come and to think a little bit about the future. Here’s what I came up with.

From Fear to Acceptance.

First, the diagnoses themselves. From the first one, when our lives began to change, to the last one, which was more or less a given, I can see somewhat of a progression.

• With the first diagnosis, in March of 2009, there was fear. Would he ever talk? Would he ever be independent? Would he wander off one day and get hit by a car? Would he spend the rest of his life alone?

• Then came the second diagnosis, in May of 2009. This time, there was a combination of relief and anger. Relief because we finally had a name for her quirkiness and emotionality. Anger at her pediatrician, who had told us it was only a matter of bad parenting.

• Then came the third diagnosis in September of 2010. This time, there was mostly guilt. Guilt because of all the lost years. Guilt because this was our oldest, so he had to bear the most years of our misunderstanding him. The signs were there early on, but I didn’t want to see them.

• With the fourth one, in March of 2011, there was a sense of validation. I had called it early on this time. This little fellow spent almost an entire year insisting that he wear nothing but red shirts and shorts. He would also get so absorbed in building Legos that he would forget to go to the bathroom.

• Then came the fifth in early 2012. This time, there was laughter. I had seen so much with the first four that nothing was a shocker. Besides, by this time, my attention had turned to working with the kids’ schools. Frankly, I had bigger fish to fry than to react to something I was beginning to think was inevitable.

• I’m sure I felt something when the last diagnosis came during the summer of 2013. I just can’t remember what it was. Nonchalant acceptance, maybe? More or less, I took it in stride. Nothing could shock me anymore. It just gave us more insight into this sweet little girl.

Not Just Labels.

But besides the accumulation of labels, there are some other milestones. During this time, I have:

• Attended more than 30 IEP meetings at three different schools.

• Spent nearly $50,000 in autism-related medical and psychological treatments, schools, medicines, and therapies for my kids.

• Lobbied our state representatives for increased funding for our local autism center—and won.

• Taken more than 15 stress-relieving day trips to Disney World.

• Seen the dissolution of two friendships—one close, the other not so much—because of misunderstandings or judgments about our family.

• Seen two other friendships slip into casual acquaintances. Not because of any malice but because our paths rarely cross any more. (Let’s face it. I rarely cross paths with anyone these days!)

• Met other autism parents online, in whom I have found encouragement, humor, common experiences, and wisdom.

• Fallen more deeply in love with my wife, whose commitment to our kids never ceases to inspire me.

• Made peace with God over the whole situation. Ironically, I bear fewer external markers of my faith than I have in decades (e.g., commitment to a Bible study, membership in a small faith community, parish involvement), but I feel more strongly connected to the Lord and my faith than ever before.

Accepting a Constant Presence.

So yeah, it’s been a wild ride. There have been wonderful triumphs, like the day our four-and-a-half-year-old finally got potty trained. And there have been crushing blows, like the day one of our kids, in a full-scale melt down, grabbed a kitchen knife and threatened to cut himself. There have been strings of days when we’ve wondered if it could ever get any worse. And there have been times when everyone seemed to be firing on all cylinders and we could breathe easier.

But through the ups and the downs, autism has been a constant presence. I know I said a few years ago that not everything is about autism, but I don’t think that’s true any more. Autism is an integral part of who my kids are, and that means it shows up in just about every aspect of their personalities. They’re not being autistic only when they’re melting down or misinterpreting social situations. They’re just as autistic when they’re happy and making excellent progress. They do everything a little bit different, and that’s part of what makes them so unique.

I guess this means that I no longer look at autism as a scaly, ravenous monster ready to devour my children. There are days, mind you, when it seems like that’s happening. But there are many more days when it feels more like an awkward, galumphing puppy that you have to keep an eye on—you don’t want it peeing on your floor or chewing your furniture!

So have I come to a point of acceptance? Yes and no.

Accepting my kids and their unique neurologies? Absolutely.

Accepting the fact of their diagnoses? Pretty much, although there are times that I lose sight of it.

Accepting that this is how they’re going to be forever? No. I’m not trying to fix them, but I am trying to teach them how to be as successful as possible in a world that can seem so bizarre, alien, and even frightening.

What’s around the Corner?

And that’s where the future comes in. As I stand at the five-year mark, I can be proud of what we’ve accomplished, even as I peer nervously around the corner to see what’s still waiting for us. I know every year will have its own challenges and triumphs. I also know better than to assume that the worst is behind us. No one can say that with any degree of confidence. But I can say that the past five years have changed and shaped me in ways I never expected. They have shattered old misconceptions and built up new, stronger convictions. They have revealed a shallowness in my heart and taught me how to love more selflessly. And they have taught me never to put limits on what I—or Katie or any of my kids—can do.

There are many more obstacles to overcome, many more challenges to face down, many more threats to neutralize. There’s so much more we haven’t experienced yet, but I think we’ll be able to handle it.

Just as we’ve done for five years.

No Love from the Lollipop Guild

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Someone’s unhappy. No lollipops at the bank, because Daddy used the ATM tonight. Mommy always uses the drive-up window, and the Little Guy always gets a lollipop. But it was after hours, and the window was closed. The poor guy sitting in the back seat of my car just couldn’t comprehend a world in which The Bank does not equal Lollipop. No matter how many times I explained it to him, it just didn’t load. He knew his routine, and there was no room for variation. The autistic brain thrives on structure and predictability. Unanticipated change is a dangerous thing—especially when that change means no lollipops!

A Stuck Brain.

“Are we going to get a lollipop?”

“Not tonight, Little Guy. I have to go to the ATM.”

“Aren’t you going to the bank?”

“Yes, the ATM is a machine at the bank.”

“Doesn’t the machine give lollipops?”

“No, it doesn’t. If you want a lollipop, you have to go to the window. But that’s closed now.”

“But we going to the bank, and we always get lollipops at the bank.”

“Yes, but we can’t get one tonight.”

“But Mommy always gets lollipops at the bank.”

“That’s because she uses the window. But the window is closed, so we can’t get one.”

“No lollipop? This is so wrong!”

“I’m sorry, Little Guy, but we can’t get one.”

“But aren’t we going to the bank? We always get lollipops at the bank.”

I tried. I really did. I tried changing the subject. But he kept circling back to the lollipop. I tried to turn it into a game, tickling him and telling him that we had a yummy dinner waiting for us at home. Nope. I even took him to the drive-up window so that he could see that no one was there. No dice. No matter what I did, he became more and more anxious.

Plan B.

So I did what any sane man would do. I took him to the drive-through window at pharmacy across the street. They give out lollipops too.

“Hi, I think you have a prescription waiting for me? The name is Z-a-n-c-h-e-t-t-i-n. Nothing? Oh well, I guess my wife already picked it up. Oh, by the way, can you give my boy here a lollipop?” [I’m so clever.]

“Sorry, sir. We’re all out of lollipops.”

$#!† Now I was really in trouble. He started to cry. Big, crocodile tears.

Plan C—Please?

As we headed home, I tried a different distraction. I promised him a couple of mini Reese’s Peanut Butter Cups after dinner. But his language glitch was in high gear. First he thought I was promising him a cup of chocolate.

“No, chocolate and peanut butter. Together.”

“But I don’t like peanut butter. Only Nutella.”

“No, Little Guy. It’s a Reese’s Cup. You remember them, don’t you?”

“Is it chocolate ice cream?”

“No, chocolate and peanut butter. Together. You know—Reese’s cups!”

“Do you have them here?”

“No, they’re at home, waiting for us.”

“Instead of dinner?”

“No, after dinner.”

<Sniff> “Okay” <Sniff> “And a lollipop, right?”

The Comforts of Home.

By this time, we had pulled into the garage. He got out of the car, headed into the kitchen, and ate dinner with the rest of the family. A little disconsolate, but nothing too dramatic. Come dessert time, he had completely forgotten about the Reese’s cups. He was back home, back in his routine, and all was right with the world.

The little stinker!

Not So Fast!

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2014 seemed like it was going to be a good year. Our two oldest were enrolled in a private school dedicated to kids on the high-functioning end of the autism spectrum, and they were actually enjoying it. We were, too. Who wouldn’t? There is very little homework, and the teachers are both knowledgeable about ASD and approachable.

Our next two oldest kids were making good strides in the public school, including a very responsive IEP team for our fourth child. And the two youngest were skating along beautifully, showing the world just how much they could learn.

We had taken a relatively incident-free overnight trip to Disney World in January, and in February we took a longer trip to visit my father in Tampa—again, with no real problem. During that trip, we took a side visit to Sarasota that blew me away. The primary purpose was to visit my mother’s grave, but we turned it into an all-day thing, throwing in a lunch at a restaurant downtown. That entailed walking through a crowded arts fair. But again, with no incident. What’s more, at the restaurant, two people told us how beautiful our family was and how well-behaved our children were. I couldn’t have been more proud!

Things were going so well, in fact, that I caught myself wondering whether I was making a mountain out of a molehill with all this autism stuff. Was I just being too dramatic? Was I letting my fears color the way I looked at my kids? Maybe I was turning my anxieties into self-fulfilling prophecies.

Oh, Well . . .

That was a few weeks ago. Since then, we’ve had to deal with . . .

• A huge melt down from one of our private-school kids over a Doctor Seuss celebration the school had been planning. This trivial event brought back embarrassing memories from a similar one seven years prior. “I can’t go to school,” she wailed. “Don’t you remember how I had a migraine in kindergarten during Doctor Seuss Day, and I threw up? I don’t want that to happen again!” It took two hours of helping her work through it before we could get her to school. Ant that was just the beginning. For the entire week afterward, she became so anxious that she began throwing up every day.

• Completely irrational anxiety from our oldest about his upcoming confirmation—all because of a cognitive glitch that left him petrified of our local bishop. Seriously, the guy’s a kindly Cuban gentleman who lives next to the cathedral in St. Augustine. But my boy was convinced that the bishop was going to interrogate him in front of the whole congregation and condemn him to hell for his sins!

• Increasingly angry, sometimes violent, outbursts from our eight-year-old every evening. Once he’s surrounded by the whole family at the dinner table, he becomes jumpy and irritable. Too much stimulus that he can’t control. Too many voices talking. Too many flavors and textures on his plate.

• Our ten-year-old whiz kid fighting tooth and nail instead of doing the bang-up job he was capable of on his STEM project. The melt downs bordered on the epic because Minecraft had to win out.

• Our six-year-old girl collapsing into an emotional heap every time we corrected her for the slightest mishap.

• Our five-year-old boy suddenly becoming unable to sit still for love or money. Unless he’s playing Fruit Ninja on my iPad or watching YouTube videos of Angry Birds on the computer.

No Laurel-Resting.

So yeah, it’s been a trying couple of weeks that left me wondering what the hell happened. Everything was going so well, and then all of a sudden it wasn’t.

All this has shown me something, and I hope I don’t forget it.

Good days come, and you get a break every now and then. Maybe even a longish one lasting a couple of months. But God help you if you ever let down your guard. If you don’t keep working with your kids, if you don’t take advantage of every opportunity to move them forward another step or two, you risk losing more ground than you thought you had gained.

I knew it, but I relearned it: ASD is permanent. It’s also a tricky S.O.B. Just when you think you’ve got it figured out, just when you think your kids have it licked, it comes out of left field and says, “Not so fast, Cowboy!” This is especially true when your kids are high-functioning. They get good at masking what’s going on inside them, until they can’t take anymore. And if you’re not careful, you play along with them.

The Trap of Wishcraft.

It also showed me the power of the imagination. In a sense, I was in denial because there were no immediate crises to deal with. Things were relatively smooth, and I let wishful thinking take over. Rather than pay attention to the signs that some of the kids were beginning to unhinge, I slacked off and enjoyed the rest. And yes, there were signs. Katie saw them and tried to alert me to them. But I didn’t want to look. Instead, I conjured a fantasyland in my mind and tried to make the outside world conform to it.

I don’t think I’m the only parent who does this, by the way. Everyone takes a mental vacation every now and then. But in the case of special-needs parents, the stakes are usually much higher.

So we slid down the mountain a bit. It happens. But that’s okay. I’m back on the watch tower now.

Dude, That’s So Intense

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iPad Boy

Isn’t this a cool picture? That’s our eight-year-old boy playing Fruit Ninja on the iPad. This is quite a common sight in our home. It’s just one of many contortions this kid does. He’ll fold himself backwards over the back of the sofa. Or he’ll have his legs crossed, yoga-style, and suspended in the air while he rests on his shoulders. Or he’ll curl himself up in a ball, with one leg sticking out at a highly improbable angle. Or a combination of many different poses. He’s never in the same position for more than a couple of minutes.

When he’s not twisted up, he’s like a perpetual motion machine—hopping, dancing, mock-battling, wrestling with his reluctant little sister. Dinner is always difficult for him. He’s usually the first one out of his seat (within three to five minutes), running around or hopping up and down. Even taking a walk can be an exercise (sic) in unique movement.

A Fun Walk

He’s not the only one, either. His next-oldest brother is very much the same way:

Upside Down Buddy

Now, this is a marked contrast to his younger brother who will, at odd times, simply plank.

Plank BoyKatie and I think he does this as a coping mechanism when he gets overwhelmed. He just shuts down for a few minutes, presses his internal reset button, and then he’s back at it again. He’s just as hyperactive as his brothers, but he has a different way of dealing with overstimulation.

Funny enough, though, if you put any of these kids in front of a computer on Minecraft, they can sit still, absorbed, for hours. They may be at odd angles again, but they’re still.

Isaac Newton Explains.

So what’s going on?

Katie and I think it’s related to something called Intense World Theory. Pioneered by a pair of neuroscientists in Switzerland, Intense World Theory posits that people with autism are hyper-aware of everything going on around them and within them. ASD folks feel everything so intensely—both physical and emotional—that their attempts to compensate need to be just as intense. It’s like an autistic version of Newton’s Third Law of Motion: For every action, there has to be an equal and opposite reaction.

So our armchair contortionists are merely reacting bodily to the busyness around them and in their minds. Their world is so intense and so full that they react to it in a similarly intense, involved way. Or it’s so intense that they need to shut it out at times, as our little one does, so that they can press their internal Reset button.

This also explains their ability to become so absorbed in the world of video games. It can be very loud and frenetic, but it is also limited and contained. Just a small screen (okay, small-ish) that they can turn on or off. And as noisy as it is, it’s also pretty predictable. So there’s an element of safety and comfort there. Of course, engaging in the virtual world doesn’t really help them get out their pent up energy. It only helps them suppress the need for it and, therefore, suppress their need to (over)react to it.

It’s Just Too Much!

All this can be kind of cute, but there’s another, more troubling, side to it.

Take my oldest son, for instance. He likes to go to Teen Gamers, a monthly gathering of middle- and high-school students hosted by the local library. It’s a place where kids can hang out, play video games, and have pizza, all under adult supervision. I don’t mind that it’s all about video games. Considering his social anxiety, it’s a golden opportunity for him to expand his social circle.

But as much as he enjoys himself there, as soon as he comes home, he hurries up to his bedroom and spends the next couple of hours in virtual seclusion. The same can happen after a long day at school or after we all go somewhere as a family. In fact, after just about any situation where he is out of his comfort zone, the boy high tails it to his room, turns off the lights, and burrows under the covers with his 3DS or his iPod Touch. The outside world is too much for him to handle, and he needs time to decompress.

Something similar happens with my older daughter, although with her, the reaction isn’t always delayed. She is just as likely to melt down right in the middle of a store or restaurant as she is to wait until we get home. That’s why we’ve come to expect her to spend a considerable amount of time in the bathroom at church on Sundays.

That’s how intense the world can be for these two. It can actually hurt to be engaged in it for too long.

Silly? Stubborn? Sullen?

I like this explanation a lot. It helps me see that my kids are not being antisocial—at least not on purpose. It also gives me some more insight into the way their brains are wired. And most important, it helps me adjust my plans and expectations.

I know, for instance, not to expect them to be able to handle a marathon day at Disney World. I should be happy to get three hours out of them—and that’s with one or two breaks so they can regroup. It also helps me understand what school is like for them. They spend six hours trying to maintain an ordered exterior while everything around them (and within them) feels like it’s set on overdrive. Of course they’re going to need some serious decompression when they come home—whether that means time on the trampoline or some mini-hibernation. There’s no way we should expect them to do anything productive like homework right away. And on days when there’s a lot of homework, we know we need to break it up into smaller chunks—or tell their teachers that they’ll finish it the next day.

Now, I know that they can’t expect this to go on forever. They’re going to have to find other ways to cope when things get too rough. There aren’t too many workplaces that have yoga mats or dimly-lit quiet rooms for decompression. And God help you if you take too many breaks! So we are trying to teach them how to increase their tolerance and find other, less obvious, ways to deal with all that frustration and overstimulation. It’s all part of living with ASD. They’re not being silly or stubborn or sullen. They’re just trying to survive.

O Necessary Sin!

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Earth

 

A few days ago, I came across this post on another autism parent’s blog, and it got me thinking, again, about the question of God and his role in stuff like this. The author is an associate pastor in a nondenominational church in Oregon. He has five kids, one of whom is on the severe end of the autism spectrum. In the post, he talks about how the Christian faith is a “lousy force field.” He says that being a Christian and belonging to a church really doesn’t insulate you from all the bad stuff that happens out in the real world. “It’s a lie,” he says. “We are living neck deep in the stink of life just like everyone else.”

Exactly. That’s our experience as well. Believing in God, going to church, having a regular prayer time, etc. None of it guarantees you a problem-free life. It may help you face the challenges when they come. It may help make you more peaceful, more patient, and more trusting. But it won’t shield you from the bad stuff. It should help protect you from sin and all the bad stuff that is the direct result of your own personal sins. But it won’t shield you from the bad-things-happen-to-good-people stuff.

I’ve got to hand it to this fellow for being honest about how broken he feels by his son’s situation. He doesn’t try to put a brave face on everything because he doesn’t want to give Christianity a bad name. He’s clearly been through the wringer, and he’s not going to deny it.

I also want to commend him for his determination. He hasn’t given up on God. He’s still out there helping people. He’s still pouring himself out for his church and leading a congregation in prayer—all with the goal of bringing them in touch with God. Really inspiring!

When Bad Stuff Hits.

But what this post got me to thinking about, again, was something I hinted at in a more recent post of mine: My kids on the spectrum have a prophetic role to play in this world. And for that reason, I am beginning to think that their ASD is part of God’s plan—for them and for the people whose lives will intersect theirs.

Here’s the thing: We want our children to be perfect. We want them to have good health, a good education, a bright future, no real problems or major roadblocks on the way to happiness.

But then autism happens. Or cerebral palsy. Or mental retardation. Or childhood diabetes. Or a host of other genetic, uncontrollable diseases and disorders. Suddenly the dream of a near-perfect life is gone. Our hopes are shattered. We worry constantly about our children’s futures. Their present is a long list of treatments, medical bills, and huge adjustments to everyday life. What happened? We had such beautiful plans, and now they seem smashed to pieces.

Quite often, too, we begin to wonder where God is in all of this. How could he let this happen to our innocent little child? What kind of Father is he anyway? I know a thing or two about fatherhood, and in no way does this fit into my definition. Many people, hurt and disenchanted, turn away from God. Others try to comfort themselves with analgesic statements drawn from inspirational posters and Chicken Soup for the Soul books. Anything to help reconcile our plans and dreams with the far more difficult reality thrust upon us and our children.

Frying Other Fish.

But what if this was part of God’s plan all along? What if this was part of the way he dreamed our children into existence from the start? After all, the Bible tells us that every hair on our heads is counted (Matthew 10:30). It tells us that God knit us together in our mother’s womb, and that every day of our lives is already written in his book (Psalm 139:13, 16). Drawing on a particularly memorable description of the act of conception, it tells us that God poured us out like milk and curdled us like cheese (Job 10:10). If he was so intimately involved in our children’s creation, how could something like this slip in unintended?

Actually, it’s not too hard to imagine that God had a hand in this. His ways aren’t our ways, are they? We may want a comfortable home in the suburbs, good schools, and a promising career for our kids, but I suspect that God has other fish to fry. Not that he has anything against the middle-class American dream, but I think his sights are set a good deal higher. He seems to be much more interested in a world marked by love, compassion, justice, and mercy. He seems to care more whether the people he created look and act like his Son—a poor carpenter who didn’t have a place to lay his head.

So how is he going to get this to happen? Certainly not by giving everyone the same homogenized, perfect, problem-free lot in life. If there were no poor, there would be no generosity. If there were no sickness, there would be no compassion. If there were no hardship, there would be no growth in character. There would only be one big, bland, barrel of blah. Yes, God wants to give us good gifts. But the gifts and the goodness he has in mind far outweigh the trinkets and gewgaws we often ask for.

No, there has to be sickness. There have to be disorders. There have to be natural injustices like autism, down syndrome, and MS. It’s all part of the “happy fault” and the “necessary sin of Adam” that we Catholics exult in at the Easter Vigil.

So no, life isn’t fair. It isn’t supposed to be fair—at least not according to our standards. It’s about how we take what God gives us and use it to build his kingdom.

A Royal Calling.

That’s why I think kids with special needs have a valuable, prophetic role to play in this world. In a way, they are God’s word to us. They call us to a deeper, more meaningful life. With their innocence and vulnerability, they invite us to become more than the collection of our possessions, our education, and our ambitions. They call us to become Christ for them, even as we see Christ in their eyes.

The pastor I mentioned above ended his post with these words:

I don’t know whether Jackson will be fully restored in this life or the next, but he will be restored. It will happen. That means my son and others like him—the ones who for centuries have been forgotten, bullied, mocked, and thrown away—they will be heralded like Kings and Queens, and celebrated like rock stars.

While I pray every day for my kids’ healing (and I’m not always sure what that means), I get the sense that their full restoration won’t happen this side of eternity. They have too important a part to play. But I do believe that in this life they will be “heralded” like the royalty they are—if by only a few people. In my heart I try to do that every day, and I firmly believe that they’ll find other people who will treat them with just as much honor and reverence. People who will love and accept them for everything about who they are—not in spite of it.

I know that’s how God looks at them.