Category Archives: From the Home Front

Mountain Climbing for Christmas

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montaintop castle

Well, we survived another Christmas in our house. I suppose I shouldn’t say “survived” this year. There have been times, mind you, when that has been the best word to describe our family’s holiday observances. Having six kids on the autism spectrum can lead to all kinds of challenges around the holidays. From the absence of a structured school day to the sensory overload of a joyous but crowded Christmas liturgy, there are lots of opportunities for ASD people either to melt down or withdraw into their own worlds.

But this year was different. There were some minor issues along the way, but nothing left me shaking my head in deep frustration or abject resignation.

So what made the difference? I think much of the reason lies in something that happened four weeks earlier, on the first Sunday of Advent.

Two Horizons.

There’s a funny thing about Advent. For at least the first two weeks of the season, the Scripture readings in the Catholic liturgy focus on the “second coming” of Christ at the end of time instead of his first coming on Christmas Day. The prophet Isaiah’s glorious “mountain of the house of the Lord” is in the horizon, not the peaceful manger in Bethlehem. It’s a time of restoration and perfect, lasting peace, a time when the lion lies down with the lamb and when all the barren “wildernesses” in the world are transformed into lush landscapes.

It isn’t until December 16 that the scene shifts and Mary and Joseph take center stage rather than Isaiah and John the Baptist. In a sense, we shift from our ultimate goal—heaven itself—to one of the most important mile markers on the road to that goal—the dawn of redemption at the birth of Christ.

This shift can feel a bit jarring, but I saw something new this year. With its early focus on the second coming, Advent has a sense of movement. You know that you’re heading somewhere. The destination is always in view as you are encouraged to take one more step toward it. Rather than a time of passive waiting for Jesus to appear (in whatever form), Advent is a time for journeying. It’s a road, not a way station.

Progress on the Road.

What does all this have to do with autism and my family? Well, as we headed to Mass on December 1, it occurred to me that we are heading somewhere as well. We’re not just treading water, trying to survive the next melt down. We’re not just anxiously awaiting the next diagnosis or school-related drama. We’re not just marking time between therapy visits and prescription refills.

It kind of sneaks up on you, doesn’t it? You expend so much energy helping your kids make sense of the outside world, negotiating truces between them, advocating for them, picking up the pieces after they fall apart, and trying to forestall the next crisis that you rarely get the chance to see how much your work is paying off. But it is.

For one thing, whether you know it or not, your kids are figuring things out on their own, often quite independent of you. They’re developing their own coping skills and testing their own strengths and weaknesses. They’re learning what works and what doesn’t as they try to make sense of the jangled, jumbled world they’ve been thrown into. They do is all by themselves, when you’re not looking, and they come to their own conclusions about how they should live.

For another thing, your words are getting through to them, even if you have to repeat them over and over again. Just the other day, our oldest daughter verbally walked me through her unique, unorthodox strategy of how she was trying to avoid a melt down over a toy she wanted—and then proceeded to prove that it worked. Not only did she not fall apart; she was pretty darned proud of herself.

Finally, you don’t tend to notice day-to-day how much your kids are changing you. They’re making you more patient. They’re teaching you how to love in ways you never thought of. They’re making you more compassionate—not just for them but for everyone else who struggles. In a way, they’re helping to make you more like Christ.

In other words, you are on the road. It’s just hard to see it sometimes.

New Road, Same Destination. 

It sounds so simple, but when you’re in the thick of it as often as we are, it’s hard not to see the forest as just one freakin’ tree after another, each tree blocking your path. But those trees are more than just obstacles; they’re marking out a new road for you to travel.

This is one of the biggest challenges I face as a parent: accepting a different path for my family than the one I imagined so long ago. But that’s where my kids come in. Each in their own way, they’re heading down that path of their own accord, and they’re taking me with them. From the fourteen-year-old with intense social anxiety to the four-year-old with hair-trigger sensory issues, from the flap-happy eight-year-old to the OCD thirteen-year-old, they all seem to have discovered a new road. I have little choice but to follow them, sometimes chasing after them, as they go on their way.

I kind of knew that was happening all along, I guess, but this Advent has made it easier for me to see it. Even better, these past few weeks have made me more aware that the path doesn’t lead to a dead end or into a shadowy valley. It still leads to the “mountain of the house of the Lord.” The mountain is higher than I thought it would be. The climb is steeper than I thought it would be. But that’s okay, because the house that sits on top of the mountain is a lot bigger and a lot more glorious than I thought it would be.

Hey! Dads Rock Too!

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I had a good chuckle when I came across this blog post today. Called, “20 Reasons Moms of Kids with Special Needs Rock,” it has such gems as “Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going,” and “Because we never stop pushing for our kids.”

Lists like these are fun to read because while they do give some insights, they mostly include items that we can relate to—items that most parents of “typical” kids have often no clue about. But it struck me that dads need the occasional shout-out as well. After all, they have their part to play as well. At least they should be playing their part! So without too much tought, all in good fun, and in no particular order, I would like to propose to you . . .

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20 Reasons Why Dads of Kids with Special Needs Rock

1. Because we are sticking with it, day in and day out, when many dads give up or skip out. No wimps here!

2. Because we listen to our wives’ worries, fears, and frustrations patiently without trying to “fix” everything.

3. Because we take on our share of the load in everything, including the laundry and the diapers and the dishes.

4. Because we fight for our kids at every IEP meeting, never backing down or giving in.

5. Because many of us work 40-plus hours a week and don’t bat an eye when we come home to absolute chaos. We just dive right in and get to work.

6. Because we guard date night jealously, even zealously.

7. Because we have memorized the alphabet soup of our kids’ diagnoses—and we understand what they mean

8. Because we know that marriage is not about gourmet meals, nightly sex, and an immaculate house.

9. Because we have no problem staring down the gawkers at the mall and in the park.

10. Because we know what “fun” means to our kids, and we aren’t too proud to share it with them. Even if it means wearing silly hats or rolling around on the floor.

11. Because we know how to “gently” restrain a flailing, screaming, melting-down child.

12. Because we don’t complain when the money earmarked for our favorite hobby has to go to insurance or a new therapist instead.

13. Because we don’t care if the other “dudes” our age seem to be having more fun.

14. Because we never say, “That’s her problem, not mine.”

15. Because we have learned how to suck it up and not gripe and complain. Especially not to our wives. Most of the time.

16. Because we can spot the difference between a spoiled-brat tantrum and a genuine melt down at twenty paces. And we know how to respond accordingly.

17. Because we don’t mind when our wives fall asleep on the sofa at 8:30 in the evening.

18. Because special-ed teachers tremble when we enter the room.

19. Because we have learned how to see goodness, beauty, and progress in every tough situation.

20. Because we never, ever, ever give up.

Do They “Get” Religion?

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We had quite a bit of drama last Sunday over getting the kids to church. One in particular—our second, a 12-year-old girl with Aspergers—gave us a lot of grief. First, there was the feigned illness excuse. Then there was the pulled muscle stratagem, in which she faked a sore back because she had been throwing the football with her brothers the day before. Then, when all else seemed lost, she pulled a very clever ploy: the constipation gambit. Just one minute before we absolutely had to get out the door, she ducked into the bathroom, locked the door, and protested that she really had to go, warning us that it would take a long time.

By this point, I was done. I had been working with the others, trying to get them ready, all the while fielding this girl’s anxious protests. So by the time she played her final card, I gave up and told her to stay home. I also made sure that the computers were not accessible. I may have been done, but I was not going to be anybody’s fool!

Then came the afternoon, when she was set to go to Sunday school, or CCD as we Catholics call it. She had sworn up and down all day that she would not try to get out of it, but as soon as the time came, the same old excuses came up. Only this time with far more emotion: desperation, anxiety, fear, anger, recrimination, exaggeration. You name it, she threw it at us. Again it was clear that, short of physically throwing her in the car and dragging her to class, it just wasn’t going to happen. (Note: she’s big for her age, and not all that easily moved. If I were to try the physical approach, I would likely look like an abusive dad.)

This was all so frustrating for me. This girl is getting close to her confirmation, and to this point everything related to God or faith or the Church has been a struggle. As you can guess from previous posts, I take my faith pretty seriously, and one of my highest goals is to see all my kids come to a personal embrace of their faith, just as Katie and I have. But this is probably the best picture of how this girl’s guardian angel must feel on Sundays.

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Literal Brains, Spiritual Truths.

It took me a few years to get to the point where I’m not all that surprised by this. For quite a while I tried to force my expectations on them, wondering if they would ever accept the faith that is so important to Katie and me. It’s hard to admit that this may never happen because of their ASD, but I’ve come to realize that it’s a very real possibility, if not a downright probability.

After all, teenagers on the autism spectrum tend to have a harder time with religion than their neurotypical peers. ASD kids are very concrete thinkers. Inference and abstraction are foreign concepts. So the thought of an invisible Person whose presence and influence can be detected by intuition and emotion can seem absurd. Aspies tend to be fiercely independent and unwaveringly evidence-based, so there’s not much room for faith in a brain like that. There’s not much room for the idea of submitting one’s heart and mind to an exterior, mysterious God. If my girl were in the upper room with St. Thomas, she would have outdone him in his demand to probe the wounds of Christ before believing that he had risen from the dead.

All this can make the whole idea of a religious service, whether it’s a solemn Mass or a nondenominational electric guitar-fueled gathering, extremely foreign. Then, when you consider all the sensory issues involved—incense, lots of unfamiliar people, loud music, all that sitting and kneeling and standing—it’s a melt down waiting to happen.

At times this has left me wondering if I should even bother to teach the faith to my children. Maybe it would be better just to aim for good, moral kids who stay out of trouble. If their brains are wired so differently, why pretend they’re going to “get it” anyway?

Meeting God.

But I just can’t do that. I may have to accept a different script for my children’s lives than I had intended, but I’m still not giving up. For all the trouble it can cause, and for all the creativity it can demand to get them to Mass, I still believe it’s worth it.

That’s because I believe in a God who acts—and who acts dramatically. You see, while many of my convictions about religion were formed by the Catholic intellectual tradition—I studied philosophy and theology at a Catholic liberal arts college—these convictions came to life for me because of a deep interior conversion experience.

It’s a long story, but suffice it to say that when I was a junior (32 years ago this month, in fact), I had an experience of God that was intensely personal. Everything I had learned in my brain became real to my heart, and I was convinced beyond a shadow of a doubt that God was real, that Jesus loved me, and that his Holy Spirit was alive and working in my life. I felt a joy I had never known before, as well as a freedom from guilt and a new sense of purpose to life. I’m convinced that without this experience, I would have lost interest in God years ago.

That’s why I’m not giving up. I know that God is bigger than ASD. I know that he loves my kids. And if he loves them, he can’t help but want to show them his love. So I believe that somehow, somewhere, in some manner, he will do for my children what he has done for me. He’ll make himself known and touch their hearts. I don’t know when. And I certainly don’t know how. But I believe deeply that he will do it. I just have to adjust my expectations of what that will look like.

Doing My Part.

So in the mean time, I’ll keep doing what I can. I’ll keep making sure that they have the data in their minds so that when God moves, it can transfer to their hearts. I won’t try to force faith on them. And I certainly won’t get my expectations too high about their emotions or their spiritual intuitions. Where some of my friends’ older kids are beginning to own their faith, I’m not expecting my kids to do that any time soon. At this point, my main concern is to make sure that the information is there. It’s to help them feel as comfortable as possible in church. I know they may never be all that comfortable. But at least it’s a start.

So here I am doing my part. The rest is up to you, God. Good luck!

And if it never happens for them, if they never “get” the experience I had, I won’t sweat it. As I said above, God is bigger than ASD. He’s also bigger than any one model of religious experience or salvation. Even if they can simply come to accept the premises of faith and try their best to live an upright life, I’ll be happy.

Because you made them the way they are. You know who they are. And you won’t let them down.

Blues Radio

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web-maxell-blown-away-guyYesterday was an easy Saturday, when I had the luxury of running a few errands on my own. Normally, I enjoy these rare events when I can get out and knock a few things off my to-do list. But today was different. I just couldn’t slow down my racing mind as I drove around town. Like a car radio that was stuck in “Seek” mode, I kept changing stations from one worry to another.

<click> To thoughts about one of my daughters, whose perseverations and OCD-like anxiety have increased dramatically the past few months. On the short, ten-minute drive to her tumbling class last week, she asked Katie over and over and over again, “Are we going to be late? I can’t be late. Please hurry up, Mom, I don’t want to be late. My friends won’t like me if I’m late.” (Katie left ten minutes early to stave off these worries—but to no avail.)

<click> To thoughts about another son, who can’t control himself when a cascade of negative emotions comes over him. The slightest word of correction will send him into a rage, as will the smallest disappointment or denial of a preferred activity. I have worked and worked with him, trying to teach him “cooling thoughts” and self-calming activities, but none of it helped. Now we have to turn to medication to help regulate his emotions.

<click> To thoughts about how to convince a glacier’s-paced school system to give my son the help he needs in social and pragmatic language skills. He’s a whiz at simple mathematics and spelling, but he doesn’t always get nonverbal cues, and he can have a hard time expressing himself clearly. The inferential thinking involved in reading comprehension and word problems is a challenge for him, but his teachers are reluctant to do more, since his other skills are buoying up his grades. “He’s not failing, so what’s the problem?”

<click> To thoughts about the son who can spend hours at a time in his room watching his favorite YouTube personalities talk about video games. His self-isolation is giving him a short temper with his siblings and keeping him from the few friends he has. But it’s like pulling teeth to get him to interact.

<click> To thoughts about finances and all the visits to therapists, psychiatrists, counselors, and doctors for everyone. And then there’s the private, Aspergers-only school our two oldest ones attend—and which at least one more will likely end up in.

<click> To thoughts about our daughter the hoarder and what it’s going to take to get her to part with some of the things she has collected—or at least organize her bedroom so that we can see the carpet. And to thoughts about what makes her so anxious that she feels such a deep need for all these toys. For a recent overnight trip, she stuffed more than twenty of her plush Pokémon figures into a backpack just to keep them by her side. They never saw the light of day, but she refused to be parted from them. “They help keep me calm.”

Daddy’s Home!

By the time I had finished my run and was pulling into our neighborhood, I was feeling pretty depressed. So many unanswered questions. So many problems needing to be solved. So many signs pointing to the challenges my kids have yet to face. (Not to mention, my errands were a bust. No store I visited seemed to have anything I was looking for.)

This is what it can be like living with autism and Aspergers—especially in a world that reduces things and people down into their various components. You wind up seeing everything in terms of the goal, the challenge, the problem, the next “thing” that needs to be addressed. With so many kids on the spectrum, Katie and I have to juggle a variety of diagnoses and an even wider array of manifestations of them. So it’s easy to focus on the problems and miss out on the bigger picture.

It took me a while to come back down to earth and remember that my kids are more than the conglomeration of their problems. It helped a lot when, as I walked through the front door, our youngest popped up off the sofa and ran to me, his face beaming with delight. “Daddy! You came home! I missed you so much!” Then his brother, four years older, came down from his bedroom and shouted, “Yay! Daddy’s home!” and then began jumping up and down with great gusto and doing his signature spinning headstand on the sofa.

None of the challenges went away, of course. They are all very real and still demand my attention. But none of them can overshadow the innocence that these kids have. Even my oldest two, for all their adolescence, have a childlikeness about them that melts my heart. They all have their melt downs and tantrums, but they still have that wide-eyed wonder and openness that tells me there’s still loads of hope. It’s when they shut out the world—or shut me or Katie out—that I need to be concerned.

I suppose the fact that I see my kids in such a reductive way every now and then is, I suppose, to be expected. I’m just glad that today my kids helped me move beyond this partial vision so that I could see with my heart and not rely on my racing mind.

The next time I’m out on my own, I’ll listen to NPR.

Dissecting a Victory

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So today was the big day. We had our eligibility meeting at the school to determine if our fourth child, a third-grader, qualified as being on the autism spectrum according to the school district’s definitions. And I’m happy to report that the IEP team (consisting of the school psychologist, the speech therapist, our son’s teacher, the assistant principal, our private psychologist, and Katie and me) all agreed that he met the district’s criteria for being identified as ASD.

A Good Day.

On one level, not much has changed as a result of this new designation. He is still receiving the same services he received under his previous designation as “Language Impaired.” We’ll revisit his Individualized Education Plan later in the school year to see if he needs more help than he’s currently receiving.

But having him identified as being on the autism spectrum is also a safeguard for the future. Should things go downhill for him in the social/emotional sphere, as it has done for our older daughter, school officials will know that part of it is because he has autism. And that will alter the way they intervene and how they will help him.

Should he run into further glitches in his auditory processing, his short-term memory, or his ability to adapt to new surroundings (like changing classes in middle school), it will be that much easier for accommodations to be put in place to help him.

And since kids on the autism spectrum tend to be literal thinkers, it will be easier for him to access special-ed helps as the curriculum begins to demand more inferential thinking and not just rote memory or quick calculations. He can learn these skills, but he’s probably going to need more help in making the jump from the literal to the figurative.

So this was a good day. It was a long time coming, too—the fruit of a couple of very tense preliminary meetings and hours and hours of preparation on our part. It came after we had to challenge the previous assistant principal’s thinly-veiled insinuations that we didn’t know what we were talking about and that she was the real expert in autism. It came after a couple of years of seeing his school-related melt downs increase in frequency and intensity. And it came on the heels of two similarly long-fought victories for his older brother and sister. That makes us three for three. Quite a lot to celebrate, don’t you think?

Walking a Rocky Road.

So why, as Katie and I left the meeting with our son’s new designation in hand, did I not hoot and holler in victory? Why was there a lump in my throat instead of a smile on my face?

Because my son still has autism. Because yet another official organization has recognized—and thus reminded me—that he has a disability that will impair him for the rest of his life.

Don’t get me wrong. I’m glad for what we did. It’s going to protect our boy through his entire educational career. It’s going to open the door to a set of services and accommodations that will help him learn how to live in this strange world filled with neurotypical people.

But I know that through that door lies a path of misconceptions and of challenges that I wish he would never have to face. A path where potential friends may not understand him and may even reject him.

A path where potential employers may not see the gifts he has to offer.

A path where the joys and comforts of a family of his own may be forever elusive.

It’s a rougher, rockier path than most of his peers will be walking. And that’s never a fun thing to think about.

A Sobering Reminder.

We got a stark illustration of this just a few hours after that all-important IEP meeting. Katie called me at work to let me know that our boy had had a rough day at school. Because he didn’t complete a homework assignment over the weekend (we thought he had), he received a 40% grade.

It wasn’t a huge assignment, and it wasn’t a big deal. But in his literal brain, it was a complete and total failure. He came off the bus with his fists clenched, his brow furrowed, and his jaw trembling in a heartbreaking mix of anger and shame. Katie tried to help him work through it, but the rest of the afternoon was a complete loss: melt downs over new homework, high-pitched tantrums at his “annoying” younger brother, and anxious, hyperactive “stimming” that was so intense that I was afraid he might hurt himself.

He did calm down eventually, and we got his homework done. In fact, once he got all his frustration and anxiety out, he sailed through most of the work. He’s a pretty smart kid, after all. He just needed to expend himself before he could get his brain back in gear.

So this is the challenge he will be facing—and Katie and me along with him: how to manage the down side of his autism so that all his gifts and talents can shine. Because he really is a sweet, innocent, affectionate, intelligent, perceptive fellow. He has so much to offer. There is so much he can accomplish. He has the potential to enrich the lives of countless people. He just needs more help than most in getting there. He may have some serious glitches, but he’s an awesome kid. I just want everyone else to be able to see that.

It’s our hope that today’s “victory” will help this happen.