Behold, dueling breakfast sites! Continue reading
Behold, dueling breakfast sites! Continue reading
There she is. Mom.
This picture was taken back in 1996, during one of my visits to her and Dad’s home in Sarasota, Florida. I have another picture of her from two years later that means a lot more to me. But I’m reluctant to share it because it contains our entire wedding party, and I try not to post pictures of people without their permission.
Anyhow, the story I want to tell has to do with my wedding to Katie in 1998 and the role Mom played in making it special—as well as the role she continues to play, even though she has long passed on.
A Special Wedding Gift.
Two months prior to our wedding, Mom was pretty sick. The leukemia she had lived with for years was beginning its final march on her system. We weren’t sure she would make it to the wedding. We even began looking into moving the wedding to Sarasota so she could be with us. Continue reading
Here they are: our six kids. All sitting quietly at the grotto on the campus of Mount St. Mary’s University, in Emmitsburg, Maryland. “The Grotto” (a replica of the Lourdes grotto in France) has been a place of quiet, prayer, and reflection for students and pilgrims for decades. Many were the afternoons and evenings I spent here during my college years, and I feel blessed to be able to bring my kids up here every now and then.
It’s a lovely sight, isn’t it? Anyone passing by would look at them and think nothing but warm and comforting thoughts. “What a wonderful family! They must be the most prayerful, holy, and well-behaved kids. Their parents must be awesome saints!”
Now, I don’t want to give the wrong impression. Of course my kids are wonderful. They’re loving and kind and generous and good-natured. I’m crazy-proud of all of them. But angels? Don’t fall for it. They’re everyday kids with all of the challenges and temptations that their peers experience. They all have a checkered history of both fighting these temptations and giving in to them–sometimes very eagerly. They’re kids; what do you expect?
But they’re not just everyday kids facing everyday temptations. They’re also autistic. Every one of them. And that adds layers of complexity. This past Sunday morning was a prime example of these layers—and the reason why we ended up here.
A Familiar Drill.
Two of our kids had a tough Sunday morning. It began early for them. And by early, I mean six-o’clock early. I don’t want to go into the details, but suffice it to say that when one kid’s specific autistic traits trigger another kid’s specific autistic traits, it never ends well. And it rarely remains contained between the two kids. The disturbance spills over to at least one more, and that’s when the fun really begins.
So by the time we should have been leaving for Mass, four out of the six kids had been triggered in one way or another (another one would have been triggered too, but he just hadn’t gotten out of bed yet). With the melt downs and resulting emotional chaos, it became clear that Mass wouldn’t work. They were too keyed up, their emotions too raw. So we activated Plan B. We loaded everyone into the van, and headed for the Grotto. It wasn’t hard, either. By this time, they know the drill. They know that a quiet time in the mountains is much easier than sitting in a crowded church wondering if Dad was going to spring a pop quiz on them based on the Scripture readings for the day.
Once we got to the Grotto we did a few things. First, there was quiet time in the Grotto itself. Then, walking the path out toward the main entrance, we prayed a bit of the Rosary—but just three Hail Marys each instead of the traditional ten. Then, just off the main entrance, we stepped into the Chapel on the Hill, where we read the first reading from Mass, and I said a few words about it. That was it: forty-five minutes of God stuff. And not once did I have to deal with any major objections, melt downs or triggers. They were good as gold. Just as I had suspected.
Visions of Heaven.
I think it was significant that the passage we read (Isaiah 11:1-10) spoke about God’s desire to restore creation to its original harmony. The reading is filled with images like the wolf and the lamb living together in peace and a baby playing by a cobra’s den. It talks about there being “no harm or ruin” and about the earth being filled “with the knowledge of the Lord.”
We normally read this passage as a depiction of heaven. But during Advent, the Church plucks this vision out of the distant future and tells us that Christmas is a partial fulfillment of the promises. It tells us that we don’t have to wait until we die to find the kingdom of God. Right here, right now, we can take one or two steps closer to the kind of peace Isaiah talks about.
This is what I told the kids in the chapel. I told them that I’m not giving up on this vision, and neither should they. God has promised, and I’m going to hold him to his word. I will keep teaching and supporting and encouraging them to become the best version of themselves possible. Even if the forces arrayed against us are large and intimidating, I am still going to lean on God and his faithfulness. I am still going to do everything I can and trust that God’s plan for my family mirrors the plan described in this passage.
This may sound unrealistic or heroic, but what other choice do I have? Ours is far from a typical family. We have so many challenges distributed across so many different personalities that we would never survive without faith in a generous, loving God.
I don’t mean a generic faith. I don’t mean a naïve faith that is really an abdication of responsibility. I mean the kind of faith that lets you yell and cuss at God when things get out of hand. I mean the kind of faith that believes in God’s direct intervention in our lives—according to his inscrutable wisdom and on his unpredictable schedule. I mean stubborn, grit-your-teeth-and-believe-despite-all-evidence-to-the-contrary faith.
I’ve said it many times before, and I’ll say it many times in the future: I am convinced that this whole messy, beautiful, frustrating, agonizing, energizing, liberating thing is God’s doing. And so every time the challenges get too hard, or the weight feels unbearable, I know I have recourse. I can tell God, “This is the family you have given me, so I’m counting on you to give us what we need to make it through. You didn’t send your Son into the world just to tell us to pray more and try harder. So here I am. I’m waiting. Take your time if you want, but I’m not going to let you off the hook.”
I don’t know. Maybe I’m being too cheeky. Too arrogant. But this kind of prayer has gotten me through some very rough patches in the past. What’s more, it’s the kind of attitude I want my kids to have: trusting in God, but also expectant; humble before their Maker, but with the familiarity of a child to his father; accepting who they are, but never settling for a “lesser” life because of it.
In other words, I want to teach them the same kind of stubborn faith I’m learning.
I think it’s working.
A couple of days ago, I posted about an online article that appeared on a Catholic website, which I felt portrayed autism in a hurtful and inaccurate way. I mentioned that I had contacted the author and asked him to either reword his piece or remove it altogether. I also promised that I would keep you all informed.
Well, guess what? He got back to me, and in very good time. His first message was part self-defense and part apology for any way I felt hurt by his words. He was gracious in his words, but unwilling to make any concessions. His message came late in the evening, and I was too tired to formulate a response that would help him see the effect his words were having on the autism community. So I went to bed a little disappointed, but ready to continue the discussion the next day.
When I woke up, I was greeted by another e-mail in which he said that after sleeping on it, he had decided to take down his article after all. Sadly, he was hampered by the fact that another site had picked up his piece, and he no longer had control over where it was going. So he came up with another solution—one that really touched my heart. He attached the following note to the beginning of his article:
AUTHOR NOTE: In an attempt to address a serious problem I feel impacts the Church, I attempted to use autism as a metaphor. I made a sincere effort to do so sensitively, based upon my understanding of the disorder. Since then, it has come to my attention that many people have been offended by my characterization of autism and my use of it in this context. It was never my intention to offend any parent of a child with autism or any person with autism. I have nothing but the deepest respect for the many people I know personally who live tremendously admirable lives in the face of the challenges autism spectrum can present. Unfortunately, circumstances prevent me from simply removing this post (which I would have preferred to do to avoid unintentionally spreading any ignorance about autism), but I would like anyone who reads this to know that I am sincerely sorry for any offense I have given and that no disrespect was intended by my original article. For those who would like the best information on how people with special needs can be welcomed in the Church and supported in their faith development I encourage readers to visit and support the National Catholic Partnership on Disability. I thank you for your understanding.
What a kind gesture! He could have let the whole thing go and just move on. But he chose to speak honestly and humbly, acknowledging the hurt he had caused. I was quick to reply and thank him for what he wrote—and for listening to my concerns in the first place.
See what happens when you advocate for your loved ones? It wasn’t easy for me to write to this fellow; I was putting myself out there in a way I don’t normally do. At least not to strangers. But I knew I had to do something. I’m just grateful that he was reasonable and open-hearted enough to listen. But even if he wasn’t, it still would have been worth it. Some things are too important to remain silent about.
So last night, the Fourth of July, held a minor victory as our oldest kid did pretty well facing his fear of fireworks. All the kids did pretty well, in fact, with each one showing a little more improvement in the sensory processing realm. Plus, they got to stay up later than usual. Mind you, we didn’t go anywhere for fireworks. We’re just talking about the small-time crackers and roman candles that some folks in the neighborhood set off. Still, progress is progress.
Anyway, this morning we ended up paying for the late night and the extra stimulation. As we were trying to get everyone ready for Mass, we were presented with two very strong tantrum-melt downs from two different kids, one stubbornly tired kid who could barely keep his eyes open, and another one exceedingly anxious about the her siblings’ potentially bad behavior in church.
We tried to roll with it. We really did. But after a while we realized that Mass just wasn’t going to work. It was too risky. So we played hooky. Sort of. Rather than go to our local church, which is only a half-mile away, we loaded everyone in the van and drove twenty miles to Mount St. Mary’s University–my alma mater of a Catholic college.
A Mini Pilgrimage.
The van is a safe zone. Each of them can enter their own world, whether by staring out the windows or by putting on their head phones and listening to music or by taking a quick nap. It’s one way to help them press the reset button, and that’s pretty much what happened. By the time we arrived, they were doing better. Not great, but better.
We spent about an hour there, walking the nearly empty campus and visiting the Grotto, which is a replica of the shrine to the Virgin Mary at Lourdes, France. We ended with a visit to the grotto chapel, where I had the kids sit as quietly as possible for as long as possible (5 minutes) and told them to try to pray. Then we read the Gospel reading they would have heard if they had gone to Mass, I said a few words about it, and we left. Nothing big. Nothing dramatic. And no other people around.
The kids did pretty well overall. We did have to deal with some sensory issues and low-level anxiety. And our toe-walker started to complain about pain in his legs from all the uphill walking. But I was glad that they got the message that Sunday is more than just another day. It’s still the Sabbath. It’s still the day that we honor God as a family. They saw that the alternative to missing Mass isn’t a free pass to video games.
A New Rule Book.
I don’t like skipping Mass. I really enjoy the closeness to God that I feel there. And for the most part, I can see how it helps the kids. But as far as I could see, there really wasn’t an alternative.
This is one thing that I’ve learned again and again as an autism parent: you have to learn to live by a different set of rules. It seems that everything we do—from church services to school, to recreation to family gatherings—we do differently. And there are times that we have to throw out even our modified rule book. But that’s okay. Because the only rule that really matters is this: Love and accept your kids where they’re at, and they’ll be more likely to follow where you want to lead them.
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.
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?
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.