Crafting a New Narrative

The Doctor–Stories in the End

We had a dear friend over for dinner a couple of nights ago. I’ve known this woman for nearly thirty-five years, and we have worked together for thirty of those years, both as teachers and in our publishing company. She’s a delightful British woman with a heart of gold. She’s involved with prison ministry, she feeds homeless AIDS victims, and she writes children’s books. She’s also very easy with the kids. Nothing fazes her. And to top it off, she even looks like Julie Andrews!

So why was I getting increasingly eager for the evening to end? And why was I so exhausted after she left?

  • Because I’m unused to people visiting our home. We tend not to have people over because it can feel like so much work.
  • Because Katie and I have let ourselves get so wrapped up in this autism thingy that we can lose track of how to relate to people outside of the “tribe.”
  • Because I caught myself wanting to talk about the kids and their challenges, even when it wasn’t necessary or germane to the conversation, and it took energy to stay on topic.
  • Because, much as Katie and I love this person, we inhabit different worlds, and I don’t know how to “be” in her world any more.

Moving Beyond “Past Performance.”

These are all viable reasons. But the more I thought about it, the more I saw that something else was going on. I saw how I’m always on edge around other people—especially when I’m with two or more of my kids. I’m always worrying about which kid is going to act up next and which unique  aspect of our lives I will have to explain this time. Sensory issues? Social missteps? The “oncoming storm” of a tantrum or melt down? World-class perseveration? So I avoid these situations. I don’t look for opportunities to get together with other people or to get the kids out and about as much as I should. And that’s not good.

The thing is, even though I fear the worst, it’s not a foregone conclusion that something bad will happen. It’s true that when things do go south, they head there with a quickness that can make the head spin. But that’s not always the case.

Thinking about this, I recognized some other assumptions or expectations I have—and not just about visitors. “We can’t all go out to dinner; it’ll get too messy.” “I know that Mass is going to be a disaster this Sunday because so-and-so had a rough week at school.” “Another IEP meeting? What’s going to go wrong this time?”

See what I’m doing? In each of those situations, I’m accepting a negative narrative for our life, and I’m letting that narrative drive my decision. Of course, some of my concerns are justified. Things can get pretty challenging for us. People can (and often do) misunderstand us. School teachers and administrators still have a way of minimizing our kids’ challenges.

So yeah, we’ve got some history to draw from. But just as those investment firm commercials tell you, past performance is not necessarily an indication of future results. And the worst thing I can do is expect bad results. Sure, there are some things I know will cause immediate problems. But a lot of other events and situations inhabit that gray area where the outcome is far from predetermined. The problem is, I’ve been painting that gray area black recently, with the result that our kids aren’t getting the opportunities to develop their social skills and coping mechanisms—not to mention the fun they could be missing out on.

Make It a Good One.

So here’s to branching out. Here’s to taking steps—baby steps at first—toward exposing our kids, and ourselves, to new experiences. It’ll probably be a bumpy ride, but they’re usually the best ones. As The Doctor once told Amy Pond, “We’re all stories in the end. Just make it a good one, eh?” So here’s to changing the narrative so we can make it the best story in the world!

There’s No One Like You

Glaceon

This morning, I was greeted by an e-mail written by my fourteen-year-old daughter. I liked it so much that I decided—with her permission, of course—to post it below. Take a quick look, and you’ll see why I’m so proud of her—and all my kids!

Have you ever felt worthless, like you don’t belong in this world and the world would be a better place without you? Well I have felt that way sometimes. I have what’s known as Aspergers Syndrome, another form of autism. I’ve always felt left out, like I’m not good enough, even though I know that’s not true.

I used to go to a private school in Florida for kids just like me until my family moved to Maryland. Now I go to a public school with a lot of kids who aren’t like me. Not only that, but I’m now with a group of friends who are all atheists, and I’m the only religious person in that group, so I really feel like I stick out. And that can make me feel bad about myself again.

I’m not saying that my disorder is a bad thing; no, it makes me special. I have the right to live no matter how bad I feel sometimes. Aspergers is just one of my many special qualities and you can’t take that away from me! I will live the rest of my life with this disorder, but as of now, me being a teenage girl, I’m young and insecure, I’m on a wire balancing my dreams, hoping ends will meet their means, but I feel alone, uninspired.

I might like things that others don’t, for example Pokemon, Anime, Creepypasta, and FNaF. I do sometimes feel worthless and left out. Sometimes I wonder why I’m even alive. But am I going to give up? NO! I will stick with myself. I will surpass all of my fears, difficulties, insecurities, and faults! Even when I go into high school next year, I will walk through those doors with confidence, and if I don’t then shame on me!

I need to look at the positive side of life. My past might haunt me, and my brothers might make fun of me, but I am a YouTuber, a DeviantArtist, an honor roll student, and a good friend. I would help anyone I know through problems that they are having, and if I can’t, then I would tell them that everything is okay and help them back up.

I might be very different from everyone else, but just know one thing. If you feel worthless, look inside of yourself and see how much you matter to God. So please look at life in a good way and try to ignore the faults of humanity. Have confidence, be yourself, and if anyone tells you otherwise, ignore them and follow your own path! You are you, and there is no one like you!

Hope. Faith. Love.

Groovy Love

For those who don’t know, I’m a Catholic, and I take my faith kind of seriously. I also like to laugh at how quirky Catholicism can be at times. Among all the Christian denominations, we have got to be the most precise bunch. It’s likely because of our ties to the Roman Empire. Compared to the Greeks, who tended to be more philosophical and flexible, the ancient Romans were legal-minded sticklers for precision. How else did they manage to conquer the world?

Off the top of my head, I can think of two ways that our Roman roots show up. First, there’s our almost innate desire to define doctrines to the umpteenth decimal point: mortal versus venial sin, degrees of cooperation with evil, specific requirements for fasting, for receiving communion, and all that. Then there are the numbers. So many numbers. Just look at the sevens for an example: seven deadly sins, seven corporal works of mercy, seven spiritual works of mercy, seven sacraments the Seven Founders of the Order of Servites. Then there are the threes: Father, Son, and Spirit; poverty, chastity, and obedience; Scripture, Tradition, and the Magisterium. And, of course: faith, hope, and love.

It’s this last trilogy that struck me today. I recalled how St. Paul talks about faith, hope, and love being the only three gifts of God that last, and how “the greatest of these is love” (1 Corinthians 13:13). And it got me to thinking about how these three virtues are the most important things we need as parents—and doubly so as parents of special-needs children. Forget Doctor Spock. Forget Doctor Phil. Even forget Doctor Who. All those self-help books at Barnes & Noble? Rubbish. All those listicles about parenting on Buzzfeed? Worthless. If you have faith, hope, and love, you’ll do just fine.

And because I’m Catholic, I will now tell you the right order in which you need them. *Clears throat*

Hope.

Every parent begins with this one. A child is born. He is beautiful, innocent, full of promise and potential. We look on this tiny person that is the result of our love, and we are gobsmacked. We have such high hopes for this little baby. Not necessarily that he’ll be an astronaut or a top chef or a CEO—although that would be great. We hope that he’ll grow and flourish and find happiness and love. That she’ll find her own special someone with whom she can make a family of her own. We dream of school plays and soccer tournaments and Christmas trees and family trips. We dream of (and dread) the driving lessons, the first date, the prom, and graduation day. Holding this little blessing in our arms, we can’t help but dream of the future.

Then the child grows up, and we see things that challenge our hope. Perhaps speech is delayed. Maybe he takes far too long to learn how to walk or use the potty. Maybe she doesn’t know how to mingle with her classmates in preschool. Maybe he always cries at the doorbell or any sudden noise. Something’s not quite right, and we worry about the future. Then the word “autism” enters our vocabulary, and we feel hope draining away. What about the prom? What about graduation? What about finding love? Is it all possible?

That’s when we look to . . .

Faith.

It’s faith that keeps our hope alive. Faith in our child’s innate goodness. Faith that he really does want to do well and to succeed. Faith in the team of care providers that we stumblingly assemble to give him every chance at a full and rewarding life—whatever that means. Faith in a God who would never abandon a child of his.

That faith sees us through the melt downs, the tantrums, the tone-deaf schools, and the unthinking or unaware neighbors. It lifts us up when our kid begins to go south, whether because of regression or oppositional behavior or depression or anxiety. It sustains us through the long, wearying days and helps us sleep at night. When hope begins to fade, faith tells us that despite what we are seeing now, better days are ahead. It gives us assurance that what we hope for will come to pass (Hebrews 11:1). It may not look like what we expected, but it will come. And so we press on, fueled by faith, toward that vision that we have hoped for.

But what happens when even faith wavers? What if the child we have worked with, prayed for, fought for, and even clashed with, simply is not making progress? Maybe he can’t overcome the next hurdle, or maybe he just doesn’t want to. Whatever the case, what do you do when hope has dissipated and you can’t place your faith in any of the resources you once relied on?

You still have . . .

Love.

And in the end, you know that’s all you really needed. Your dreams may not be fulfilled. Your doctors and therapists may be at an impasse. Your prayers don’t seem to be working. Nothing is going right, and you don’t know if anything good is on the horizon.

It doesn’t matter. He’s your son. She’s your daughter. And you can’t help but love. Even when you want to throw up your hands in despair, you know that this is your child, and that knowledge brings you back to sanity. It softens your heart, if only just enough to let you take the next step forward.

No matter what happens, love wins out. It may take years, but it will win. Because a child who knows he is loved, no matter what, will always have a glimmer in his heart, and that glimmer will offer some protection, some encouragement, some guidance in the dark days. Just as God looked at us and couldn’t help but love us, even when we felt lost and hopeless, we can’t help but feel love when we look at our children.

So even if he never learns to use the toilet, even if she never speaks a word, even if he ends up living all alone or in your basement, there’s always love. Good old, stubborn love. Because it’s the one thing—the only thing—that will matter in the end.

How I Learned to Love the Drugs

Kids' Meds

Here’s a snippet of a conversation I had yesterday evening with my little girl.

Her: Daddy, why does F take medicine?

Me: It helps him not feel so sad all the time.

Her: Okay, so why does L take medicine?

Me: It helps her focus in school and not be too worried.

Her: Well, what about C? What does his medicine do?

Me: It helps him keep calm in school and at home.

Her: And what about B? He takes medicine too.

Me: His medicine helps him not get too angry.

Her: So when will I start taking medicine?

With an internal sigh, I brushed off her last question and changed the subject. I didn’t have the heart to tell her that we were going to start her on a drug trial in a couple of weeks—to help her deal with her anxiety. I figured she’d have plenty of time to think about it when the trial actually began. Nor did I tell her that her little brother was going to start his own trial around the same time. Again, the less said, the better.

So there it is. By the middle of May, all six of our children will be on some kind of psychotropic medication.

Surprised by Sympathy.

It’s interesting. I shared this little dialogue with a couple of autism parenting support groups I belong to on Facebook, and I was kind of surprised by some of the comments. Many posted the symbol for a virtual hug: (((you))), and a few said something like “It’s hard” or “So sad.” But my wife, Katie, had the best response: she laughed. It was, after all, a cute exchange, and it showed how innocent our girl is.

It never dawned on me that this conversation would elicit words of sympathy, but now that I see it through these commenters’ eyes, I think I get it. See, I’ve grown so used to our routine that it seems, well, routine to me. I don’t think of it as unusual, hard, or sad at all. In fact, it’s the thought of not medicating my children that fills me with fear and trembling—for my sake as much as for theirs!

An Evolution of Sorts.

It wasn’t always this way. Back in 2007, when our pediatrician first prescribed a medicated patch to help one of our girls with ADHD-like symptoms, I resisted mightily. I hated the idea of introducing mind-altering chemicals into her sweet little brain. It didn’t help that the doctor told us we’d likely need a prescription steroid to help control the skin irritation that often accompanied the patch. Great! A medicine to counteract the side effects of the original medicine. What could be better? Eventually, however, I gave in.

When the patch didn’t work, we began a three-year odyssey of various other trials (under the direction of two different pediatricians and two different psychiatrists) to help her not only with ADHD but her growing anxiety. One made her giddy and made her gain a lot of weight. Another gave her terrifying nightmares. A third got her so agitated that she ended up biting me on the shoulder in the middle of Mass one Sunday. There were other failures as well, but I can’t recall them now.

It wasn’t until we began working with our third psychiatrist that we found the right combination. Her anxiety diminished considerably. She lost the extra weight. Her grades began to soar. And her demeanor at home, while still needing some help, became much more manageable. The tide was turning, and I was happy—happy enough to let three of our other kids begin their own medicine trials. Thanks be to God, there was a lot less initial drama with them and generally positive results.

Six for Six.

So now our two youngest ones are on the verge of getting prescriptions. Their therapist tells us that she can do only so much with them as they are right now. The little guy is too hyperactive and the little girl is too nervous for any talk therapy to have a lasting effect. “If we can just take the edge off,” she told us, “we might be able to make some headway. But as it is, the cascade of emotions is too strong for them to work through.”

It was a bitter pill to swallow at first, this thought that all our kids need psychiatric medicines. Not only does it get expensive, but it emphasizes their otherness and the challenges they face. Still, it didn’t take me long to adjust. I’ve been down this road a few times already! Plus, the sheer everyday nature of the routine helps a lot. Maybe that’s why my little girl can be so nonchalant about it. She has seen her siblings take medicine twice a day for as long as she can remember. It’s just a part of who we are and how we live.

Embrace the Mess.

That’s probably the way it should be. For everyone. You work and work and work until you find what works for you. You let go of the “picture perfect” life you had envisioned for yourself and your family, and you embrace the beautiful, horrible, glorious, maddening, sanctifying mess that God has given you. And as you do, you find that he’s embracing you as well.

He’s probably laughing, too.

The Domino Effect

IMG_1729 See that? That’s my Little Guy being as silly (and ADHD) as ever. Not a dinner goes by without him doing something completely and engagingly out of the ordinary. From running around the kitchen table twenty times to dancing in place on the bench to ceaselessly tapping his spoon on the table, he can’t sit still to save his life—and it bothers his older siblings immensely. You know, the ones who are particularly sensitive to noises, extra activity, and anything out of the ordinary. One or another of them will end up shouting at him at every dinner, but he just keeps on keeping on, happily expending his energy.

That’s the fun of having multiple children on the autism spectrum. Some are ultra-sensitive to their surroundings while others are completely oblivious. That usually leaves Katie and me with the unenviable task of trying to mediate between the two factions. It’s not always easy, as the two most averse to noise and other sensory excitement also tend to be the most emotional ones. So they respond with a level of anger and frustration that far outstrips the gravity of the situation—that is, the gravity that we perceive. For them, their younger brother’s acrobatics are thoughtless, careless assaults on their frayed nerves. But for him, being hyperactive is his default position.

And so begins the Domino Effect. Child Number Six’s hyperactivity sets off Child Number Four’s aversion to the unexpected, then Child Number Four begins yelling at Child Number Six, which sets off Child Number One’s aversion to noise, which causes Child Number Two to cover her ears and yell louder, which causes Parental Unit Number One to try to calm down Child Number Six, which only causes Child Number Six to increase his jumping, which . . . well, you get the idea.

A Wild Rumpus.

I wish there were some way to solve this, but for the moment I’m baffled. We could, I suppose, have dinner in shifts, with two kids at the table at a time. But that can eat up a lot of time. Plus, how will they ever learn if we don’t help them work through this stuff? So we’re left trying our best to keep the little jumping bean from pushing too many buttons while also trying to help the older ones practice self-calming and emotional regulation.

Of course, some days are better than others. There are those times when the Little Guy is more subdued, or the older ones are more forgiving. But then there are the times when all Katie and I can do is raise our wine glasses to each other and smile wearily as the wild rumpus unfolds.

And then there are the worst days: when we unthinkingly rush into the fray and end up fanning the flames instead of extinguishing them. That never ends well. We’re getting better at checking ourselves, but there are times when you just can’t help it—or when safety concerns demand a forceful intervention.

Welcome to the Vortex.

This, I think, is one of the hardest things for ASD parents—keeping calm in the midst of a swirling vortex of emotional outbursts. We love our kids so much that we hate to see them upset. But the one causing the upset is another one of our kids, whom we love just as much and who we know has a hard time sitting still. So we’re torn. Plus, as parents, we want to see our kids get along, or at least be civil to each other. That’s kind of hard when they all see each other as threats to their well-being.

So we try the best we can, dreaming of that magical day when all eight of us will remain at the same dinner table for longer than our average of five minutes. Seriously. It’s not uncommon for them to run out of the kitchen not long after dinner has started. Either they’re giddily chasing each other or they’re desperately trying to get away from the noise or they’re taking advantage of the chaos to sneak back to their video games.

Collateral Blessings.

As challenging and dispiriting as this can be, the Domino Effect does have one positive side effect. After the peeling-off, there’s usually one kid still hanging out at the table, and it’s quite common for a conversation to develop. It’s not much, and it’s not long, but it’s real contact. And in a big family like ours, those moments are important.

It never ceases to surprise me the kinds of topics that come up in these impromptu encounters. From our oldest girl’s questions about two girls in her class who seem a little too affectionate with each other (this is 8th grade) to our nine-year-old telling us about the math teacher who yells at his students, we learn a lot, and we can share a little. Sometimes we laugh together, other times we offer advice, and other times we commiserate. But we always try to listen.

As I said, it’s not a lot. But it’s something, and it’s precious. Even our most sensitive kids are able to hang around for a short time—even if there’s full-on chaos in the next room. When they know they have both their parents’ attention, the other stuff recedes into the background. They know we’re listening. They know we’re on their side. They know we love them. And love always wins.

So keep on jumping and stretching and dancing, Little Guy. You have no idea how much good you’re doing!

A Wibbly-Wobbly Ball of . . . Stuff

Wibbly-Wobbly Ball

Before we start, take a look at this very short clip from Doctor Who, in which The Doctor explains the true nature of time. Trust me, it does relate.

That was pretty good, wasn’t it? Now for the explanation.

In a recent blog post, ASD guru and Aspergers role model Jon Elder Robison tackled the use of terms high-functioning and low-functioning when it comes to describing people with autism. Here’s what he said:

Much has been written about calling people high functioning or low functioning. With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading. . . . Suggesting that “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.” People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago. I didn’t like it then and I don’t like it now.

Robison then goes on to talk about how dividing people up based on their “functioning” status misses the point of how autism works:

We now know that our functional level changes with time and other factors. As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70. It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

As I said in my last post, my kids are showing me that autism can shift and swirl over time. Not for nothing is it called a developmental difference. It’s a matter of how and when a person develops social, cognitive, and communication skills. Some people develop more slowly or more unevenly than others. Some have persistent, nagging glitches in their development that affect them throughout their lives, while others overcome some challenges as they mature—only to find new challenges crop up. For many, it’s a mixture of both permanent and emerging attributes. So it’s awfully simplistic to reduce such a complex thing as autism to a question of high or low functional skills.

Forget the Spectrum.

But I want to go one step further. I want to suggest that along with abandoning the high- versus low-functioning distinction, we should scrap the image of a spectrum altogether. When we use this term, we evoke a kind of linear gradation, with some people lower down, or farther back, on the scale than others. But one problem with this approach is that people are assigned their place on that spectrum according to different criteria. Is it IQ? Is it verbal communication? Is it eye contact? Social skills?

The trouble is, someone with limited verbal skills may well have an off-the-chart IQ. Or someone who can appear gregarious and outgoing in public may be masking significant social struggles, only to melt down in private. Where would you place each of these people on the spectrum? How would you decide? And most important, what purpose does it serve?

The Autism Ball.

Rather than talking about a spectrum, I’d like to suggest we talk about a sphere—a big ball of wibbly-wobbly, autism . . . stuff. There’s no low or high end. There’s no up or down or forwards or backwards. You just happen to be somewhere on that sphere, and your fellow autistics are somewhere else on it. No one is farther along than anyone else. Noe one is of greater value than another because he or she is “higher functioning.”

This is why I like the Doctor Who clip. It paints the picture of time, or in this case autism, as a something that isn’t static but full of life and energy. And that makes it unpredictable: wild and mysterious, wonderful and dangerous.

So let’s magine a ball that contains all the possible symptoms and manifestations of autism, all wibbling-wobbling around. Things like hand flapping, mind blindness, rigid thinking, sensitivity to loud noises, toe-walking, perseveration, narrow focus of interest. Imagine that ball also containing the comorbid conditions connected to autism: OCD, depression, ADHD, ODD, etc. Finally, imagine that this ball contains the positive traits of autism: laser focus, attention to detail, unflinching objectivity, a quirky imagination, a strong sense of justice, and an innate innocence.

Now, imagine your own ASD profile as a line running through the ball in one end and out the other end. As that line travels through the ball, it intersects with the various ways your autism manifests itself—not all of the traits, just the ones particular to you. No two lines are in exactly the same place, and no line is in a better position than another. They’re just there, marking out their own individual quirks and challenges, strengths and gifts.

High? Or Low?

All of this theorizing has a point. In an earlier post, I described how misleading the term “mild autism” can be. I gave some examples from my own kids of how difficult things can be for them, even though they would be considered high-functioning. As Robison said, people with high-functioning autism still have autism, and it still affects them profoundly.

We recently went through a rough patch with one of our kids, in which we saw just how much he keeps things hidden inside of himself, especially his awareness of how different he is and how hard it is for him to feel like he fits in. But on the outside, he presents as a clever, quick-witted, amiable boy. So while he seems very high-functioning, a lot of “low-functioning” stuff is going on underneath the surface: depression that can keep him in bed for two days straight, lack of empathy, misunderstanding of other people’s emotions, learning glitches, and an inordinate need for physical stimulation. He can navigate the outside world, but only for a time. Then he shells up when he’s home or alone. Where would you place him on the spectrum? Is he low-functioning or high-functioning?

Then there’s another one of my boys. You need only five minutes with him to “see” the autism: his odd gait, his lack of eye contact, his unusual speech patterns, his stimming, and his tendency to disappear within himself for a time. But hidden behind all of these quirks and tics is a very intelligent, sensitive child with keen insights into his own behavior and the people around him. Where does he fit on the spectrum? In the higher-functioning part of the line? Or the lower? Why?

Get on the Ball!

Mind you, most of this is irrelevant to me. I just look at them as my kids, with all of their strengths and weaknesses, their beauty and awesomeness, and work with each of them based on who they are. But it does make a difference in the universe outside of our home. It makes a difference when I attend IEP meetings or when I have to explain some unusual behavior to a friend or neighbor. Most important, it makes a difference in the way society treats people with autism. If you’re a Bill Gates kind of autistic, you are given as many opportunities as you want. But if you’re non-verbal or if you’ve got some other trait that people might call low-functioning, you’ve got fewer chances to show just how awesome you are and what you can accomplish. And that’s sad, because you risk accepting a bleaker narrative about yourself and your potential than if you were given the opportunity to shine.

If we can get away from defining people based on their so-called levels of functionality, we can get closer to seeing each person as a precious individual with his or her own unique set of talents. We will stop assigning each person a value based on what he or she “contributes” to society. Each person is a gift, and you don’t assign a value to a gift based on its usefulness. You treasure it for what it is: a token of love from the One who gave it to you.

So get off the line and get on the wibbly-wobbly ball!

Serenity Now!

As my kids are getting older I’m finding myself in an unexpected position. You see, five years ago, when the diagnoses were coming fast and furious, I went through somewhat of a crisis of faith. So many challenges were cropping up. Fears for my kids’ futures began to loom large. I grieved the loss of my vision for my family. But then came a period of relative calm. I came to a clearer understanding and acceptance of our situation. I resolved to fight for my kids’ rights at school. I determined that nothing would come between Katie and me as we took up the challenges that we faced. I had, to a large degree, made peace with it all. Yes, it was going to require extra work to help our kids be successful, but by gum, we were going to do it. We were going to be the autism family!

But there’s something about this autism thingy that took me by surprise. It shifts and swirls. It’s never the same thing year after year—or month after month. I’m finding myself surprised at some of the challenges my kids are facing as they get older. Some are completely new, while others are just more intense versions of what we saw a few years ago.

So while I honestly have made peace with a number of aspects of our family’s make-up, I’m also feeling more at war with others. Not war as if I’m fighting against my kids, mind you. More like a war within myself in terms of embracing our latest “new normal.” Let me try to explain.

Serenity Now . . .

I’ve made peace with the fact that my kids are going to be different. In many ways, I enjoy their differences—their quirky take on life, their brutal honesty, the innocence with which they approach life. I’ve also made peace with the fact that I’m going to be advocating for them and teaching them to advocate for themselves for quite a few years to come. Even though it sounds like a cliché, different, not less really does describe our kids as well as the way we look at them.

I’ve made peace with the fact that my family is going to stick out, and not just because there are so many of us. For instance, on those rare occasions when we go out to eat, I’ve come to expect the unusual. Like one kid will get up and start wandering around the restaurant because he or she can’t sit still. Or another will have to go stand outside halfway through the meal because of sensory overload. Or a third will end up curled up on his chair or under the table to avoid the noise. People will stare, but it doesn’t bother me anymore.

I’ve made peace with the fact that members of our extended family, well-intentioned and big-hearted as they are, won’t always get it. It doesn’t bother me that I’ll probably be explaining things until the day I die. It doesn’t bother me, either, when one of them unsolicited advice based on what works for his or her neurotypical child. It doesn’t even bother me that our kids aren’t involved in all the extracurricular activities that their cousins enjoy. That’s probably because I’ve also made peace with the fact that we’re going to be spending more time in therapists’ waiting rooms than on soccer fields and tennis courts.

Finally, I’ve made peace with the fact that money will always be tight. With therapies and related health problems, our expenses are more than the average family’s. Plus, we’ve got six kids, not two!

Insanity Later . . .

I haven’t made peace with the thought that our kids still have a long way to go. Now that our oldest two are well into adolescence, I’m getting a sense of the wild ride that comes when you mix autism with hormones. I’m also getting glimpses of the difficulties they’ll face as they lurch toward independence. I don’t know if I’ll ever be ready for those. Schools have behavioral counselors. Churches usually are welcoming, understanding places. But employers—well, that’s a completely different story.

I haven’t made peace with the other diagnoses that have come attached to our kids’ ASD. It’s bad enough that they have social and communication deficits. Do they really have to deal with crippling depression, intense mood swings, OCD, and emotional dysregulation? Does it really have to be so hard for them?

I haven’t made peace with the fact that many of my kids will find it hard to establish and maintain relationships in the real world. The thought of them being alone kills me—even more than the thought that some of them may never leave home. It kills me to think about all the people who will overlook how cool and kind and sharp and loveable our kids are. Our kids deserve to be loved!

Finally, I haven’t made peace with the way I let our ASD-dominated life close in on me. We don’t often do things as a family, because some of our kids will have a hard time. We don’t live too far from Washington, DC, with sites like the White house or the National Air and Space Museum. But a few of our kids simply cannot handle crowds. So we don’t go. Our hometown is surrounded by mountains and woodlands. But a few of our kids become very anxious when exposed to the sounds and smells of nature. So we don’t go. Just the idea of taking some kids to the movies makes me break into a cold sweat. I know there are ways to help them through all of this. I also know which ones might do well in a museum and which ones might do well in the woods, so I can always divide and conquer. But I just don’t have the fight in me. I’m often too worn out by the daily challenges of ASD life to even consider trying something new.

Dammit!

I know, I know. I’ll probably end up making peace with these things, just as I did with the others. I know, too, that God isn’t finished with me or my kids yet. But dammit, wouldn’t it be nice to catch a break every now and again? Does everything have to be so difficult?

I guess in some ways I’m like every other parent. I want the best for my kids, and I hate it when they struggle. The only difference is that my kids have more struggles than the average kid, so I have to be stronger to help see them through it.

And believe me, I will. Just let me catch my breath first.