Behold, dueling breakfast sites! Continue reading
Behold, dueling breakfast sites! Continue reading
So we took our Little Guy to a pediatric hospital in Baltimore to begin the process of evaluating him for ASD. Up to this point, all we had for him was a provisional diagnosis from our psychologist in Florida—about three years ago. She had just begun her own evaluation when we ended up moving to Maryland, and we’re just now getting around to getting something more formal.
Anyway, today’s appointment was “intake”—a bunch of questions about his early development, his family history, his current state, and our concerns. As she asked us the standard barrage of questions, the psychologist also observed our boy in action. But the main focus was on us. For an hour.
It sucked. Not because we couldn’t answer her questions. We could. Not because the Little Guy was out of control. He wasn’t. It sucked because, well, you know why. A whole hour describing our family’s challenges. A whole hour listing our son’s deficits and telling stories about his meltdowns and his sensory issues and his social struggles and his attention deficits.
Katie did awesome. She always does. Her memory is sharp as a tack. She could recall his early developmental challenges far better than I could. She was clearer on his current challenges than I was. She spends more time with the kids than I do. She works part time, and I’m on a ten-hour-a-day schedule. Plus, she takes more therapy appointments than I do. So what was standard fare for her came flooding over me with a quickness and a matter-of-fact tone that felt like a gut punch.
You see, when your whole household is ASD, you tend not to notice all the details. It’s just part of your normal. We don’t have any neurotypical kids, so we don’t know what standard behavior looks like. After a few years, you begin to glide over the ticks and twitches of ASD. You take them in stride and keep trying to move forward. You get so accustomed to them that you don’t even recognize how many of them there are. That is, until you have to recount them to a perfect stranger with a degree.
So to hear the Little Guy’s symptoms rattled off with precision one after the other . . . well, let’s just say it was hard. Lumpy-throat hard. It broke my heart. Today was a reminder of how tough life will be for my kids—of how tough it already is.
It was a reminder of every tense, contentious, and tearful IEP meeting we ever had. It was a reminder of the friendships my kids have lost due to their social challenges, as well as the friendships Katie and I have lost because of people’s misunderstanding. It was a reminder of all that we are missing out on, like family dinners out or vacations or even peaceful walks in the woods. It was a reminder of the earlier days, when we were both new to this gig and so much more scared than we are today. And it was a reminder of the large amount of work that lies ahead of us as we plan and prepare for our children’s futures. So yeah, it was hard.
I so want to see my kids have the best future possible. I so want to see them thrive and kick ass in the world. I want to see them happy and productive, welcomed and loved. Some have a greater chance at this than others, but none of them will find it easy. All of them will ask the “Why me” question more frequently and with more poignancy than their typically developing peers. That’s why it was so hard.
Today was also hard because this evening our Little Guy put up a huge, weepy, melt-downy fuss about something he normally enjoys: soccer practice. He was probably worn out from the trip to Baltimore. It wasn’t that demanding in any ordinary way, but it was a break in his routine, and that never ends well. It hurt to see him so upset, but I knew I had to help him power through it. If he could just get on the field and start running around, he would end up having a good time. But the drive there seemed unending. No amount of consoling words or attempts at humor could calm him down. All I could do was keep driving.
We got to the field, and his mood lifted as soon as he saw his team mates. He ran onto the pitch and started kicking the ball around with them. Mission accomplished—for him at least.
It took me a little longer. Once I saw that he was okay, I took a long walk and prayed, my Rosary in hand. “Holy Mary, Mother of God, pray for us. . . .” It helped. A ton.
Now I’m sitting here on the sideline, watching my son. He’s hesitant about mixing it up with the other kids. His kick and his run can be awkward at times. His teammates engage in typical boy humor that he doesn’t quite get. And he takes every misstep of another player far too seriously. Standard Little Guy stuff.
But it’s okay. I’m sitting in the shade of a tree. A cool breeze is blowing. I catch the scent of honeysuckle on the wind. And I know God’s going to take care of us.
Everything’s going to be all right.
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.
Remember my post a few weeks ago about my daughter’s difficulty with getting out of the house because of her fear and anxiety? Well, something cool happened today.
Sunday mornings can be rough for my girl. She hates going to Mass now, because she’s petrified that she’ll have a seizure—and in such a formal, public place. So I’ve been letting her stay home, along with one of her brothers to keep an eye on her (no argument from the boys, of course). To make up for it, I’ve been bringing Communion to her and her brother every Sunday after Mass. I carry the consecrated Hosts back in a little pyx like the one in the picture, and we sit go sit on the back deck together. We read one of the Scripture passages from Mass, talk about it for a few minutes, pray the Lord’s prayer, and then I give them Communion. Short, sweet, to the point.
“I Don’t Want It.”
Today was different, though. She woke up deeply rattled by two separate nightmares. She had promised me that she would come to Mass today, but the nightmares did her in. There was no way she would leave the house, and there was no way I was going to push her.
So off I went to Mass with everyone else, carrying my trusty pyx in my pocket. In the Communion line, I presented my pyx to Fr. Keith and asked for Hosts for my two errant kids. I’m all too familiar with the drill, and so is he. So far, so good.
But when we got home, I discovered that my girl was too upset even to receive Communion. She was in our bedroom, curled up on the bed, her brow furrowed in fear. Her voice quavered as she begged me not to force her not to come downstairs for our weekly Communion service. “I’m just not stable now,” she said. “I don’t know what’s wrong with me; my nightmares are getting worse, and I don’t want to leave your room.”
“There’s nothing wrong with praying and asking God for his help,” I said. “Who knows? Maybe you’ll feel better afterward.”
“I don’t know why, but I just can’t!”
She was nearly in tears, so I put my arm around her, and offered up a silent prayer. This was worse than I had seen in a long time, and I was at a complete loss. All I could do was hug my girl, with a “loaded” pyx in my pocket.
Ninety Short Seconds.
Then it dawned on me. Maybe the Sunday morning ritual we had established was just too intense for her today. The mere act of going downstairs, getting the Bible, and sitting on the deck was just too much for her to handle. It seemed so easy to me, but not to her. If she just stayed inert in our bedroom, she thought, nothing would change. She wouldn’t have to face her fears. She would stay safe in the little sanctuary she had built for herself.
So rather than coax her out into my world, I tried to enter hers. “I have an idea,” I said. “How about we sit right here on the bed, and I just give you Communion? We don’t have to read the Gospel. We don’t have to do anything special. Just a quick Our Father, and then you receive. Can you do that?”
“I think so,” she said.
It took all of 90 seconds, and we were done. And you know what? It made a huge difference. The anxiety faded. Her smile (a slight one, at least) returned. Her hunched shoulders relaxed, and she breathed a little easier.
The change was so dramatic that I was actually able to convince her to come on a couple of errands with me. Of course, I bribed her with the promise of lunch from McDonald’s, but her willingness to join me was still a marked contrast to how she had been just minutes before.
Now, I can interpret this episode in a number of ways. Maybe my persistence paid off. Maybe the memory of her nightmares had faded. Maybe I had chosen just the right words, and delivered them in just the right tone of voice. Maybe the good feeling she got from doing what Dad wanted softened her up.
Or maybe, just maybe, God actually worked in my little girl’s heart and calmed her fears.
This answer makes the most sense from a faith standpoint, but it also makes the most logical sense. The desperate scenario I described above was not going to change. My girl was far too anxious. The only variable that changed in the equation was the impromptu Communion service. She eased up only after she received the Eucharist—which we Catholics believe is the actual presence of Christ.
I know this sounds odd. I know it sounds like I’m trying to justify my faith. But I don’t care. As long as mini-miracles like this keep happening, I’m going to keep believing. As long as I find help and answers in prayer, I’m going to keep giving God the credit. As long as my kids can point to evidence of Jesus’ presence and his work in their lives, I’m going to go with it.
That’s why I’m keeping my pyx in my pocket.
Check out this article that appears on the website of America magazine. It’s lengthy and theological, but the author, Candida Moss, makes an excellent point. She talks about how disability is viewed in the Bible, and how a misunderstanding of the Christian tradition, by overemphasizing God’s healing power, can unwittingly place people with disability on the margins.
According to Moss, many of the healing stories in the Bible can be used to “reinforce the understanding that disability is a deviation from the way God intends us to live.” In other words, disability automatically equals defect. In some cases, it also means sin—or even demonic possession. So a person with a disability is in need of a cure, someone who needs to be made different than who he or she is before gaining entry into heaven.
As a counterbalance to this interpretation, Moss asks, “Can we find ourselves as ourselves in heaven? Can the view that God loves the disabled as they are be biblically sustained?” For answers, she turns to the story of the Doubting Thomas. After the resurrection, Jesus appeared to Thomas not as a completely restored person, but as one still bearing the marks of his crucifixion: “Jesus’ wounds are an integral part of his identity. It is by his wounds that he is recognized.” So “If God incarnate is known by his glorified impairments, why would we not hope for the same?”
No Cure Needed.
As I’ve written before, I have long had a strong gut reaction against the thought that you can pray the autism away. Autism is woven so finely into my kids’ identities that to take it away would be to unravel an essential part of who they are. I find it hard to believe that, in order to be made worthy of heaven, they would have to be unmade as autistic individuals. I find it hard to believe that all the things they have learned and become precisely because of their autism has little significance or value.
My kids have spent their entire lives as autistic individuals. To a large degree, autism has made them who they are. Their “otherness” has dramatically shaped the way they live, love, and function in the world. What’s more, they have taught numerous people (most especially Katie and me) valuable lessons about what it means to be human, to love, and to be loved. I would hate to think all of that has to be left behind once they enter heaven’s gates. Who would they even be then?
What Do I Want?
So what would it mean for my kids to find themselves as themselves in heaven? Here are a few things I would want to see.
I’d Change the World for You.
Now, you’ll notice that some of these bullet points focus on my kids’ own healing and others focus on the world around them. And that is as it should be. For many of the challenges that my kids face come not from themselves or their unique neurologies. They come from a world tainted by sin and in need of renewal. They come because of the “structures of sin” that promote intolerance, ignorance, prejudice, and small-mindedness.
There’s a popular meme in the autistic community that says “I would not change you for the world, but I would change the world for you.” As a parent with two eyes, I know there are things in my kids that need to change—just as there are in me. But I also know that the world they are living in can be cold, cruel, and inhospitable to people who are different. And that’s the biggest change I’m anticipating.
So yes, I want to see my kids healed, and I believe they will be—of the selfishness and fear and pride that infects all of God’s people. But I don’t want them healed of their autism. I want them to remain the same loveable, quirky, autistic people that they are right now.
After all, that’s how God made them.
Take a look at this article from The Washington Post. It covers a controversy that has been roiling the campus of my alma mater, Mount St. Mary’s University, in Emmitsburg, MD, for the past few months. It seems that the newly-installed president initiated a survey for all freshmen to take early in their first semester. It was presented to the students as a way of helping them get to know themselves better as they transition from high school to college, and to help them understand better “the person you are and could become.” Fair enough. Everyone likes taking personality inventories and surveys like the Myers-Briggs Type Indicator. It’s helpful to know what instruments like this tell you as you begin your academic career.
Only that’s not what the survey was really about. It was designed to help the university identify which students were at the greatest risk of dropping out so that administrators could encourage these students to leave early in the semester. And it was done in the hopes of boosting the school’s retention rate, thereby getting it better ratings in places like the US News ranking. The information in the survey was meant to be shared and discussed, not just scored and returned to the students for them discuss with their advisors.
Probing, Inappropriate Questions.
Now, the misrepresentation of the survey’s purpose is bad enough, but what’s worse is the fact that some of the questions are one-sided and not really related to its stated goal. Have you experienced a death in the family in the past year? Are you taking on major student loans? I don’t see how questions like these can help the students come to know themselves better.
But wait—it gets worse. An entire section of the survey is dedicated to the student’s mental health. They are asked how strongly they identify with statements like: In the past week . . . I felt depressed. I felt that people disliked me. I thought my life had been a failure. These are very personal questions, and the students should never be asked to divulge this kind of information—especially in a survey that is not kept confidential. They are also asked if they think they are calm and emotionally stable. Can they be trusted with money? Are they a hard worker? Have they been obsessed with a certain idea or project and then lost interest?
Then comes the final indignity. The closed-ended section of the survey ends with a question that comes out of the blue: Do you have a learning disability?
A Breach of Trust.
The best word I can find to describe the survey and its intended use is repugnant. Targeting for removal students who report feeling unstable is bad enough, but then expecting them to divulge whether they have a learning disability crosses several lines.
First, a student with a disability has the right not to disclose that disability to the school. At all. Ever. It is no one else’s business except the student’s—and anyone to whom he or she wishes to reveal it. It’s like Federal HIPAA guidelines; this information is protected by law.
Second, if a student does disclose a disability, the school is obligated to work with that student to determine the appropriate “academic adjustments” that will ensure that he or she is given an equal education opportunity. While not as stringent as the IEP process for elementary and high school students, the Americans with Disabilities Act lays out specific requirements for colleges—at least for those colleges, like Mount St. Mary’s, that accept government funding.
Finally, the school is obligated to keep this disclosure confidential. A teacher may not tell other teachers or students without the student’s permission. An advisor may not tell the president or dean. Again, it’s up to the student to decide who should know and to inform the appropriate people.
What is disturbing in this story is the implication that someone with a learning disability doesn’t belong in college. Or that someone struggling with anxiety or depression should drop out. It turns colleges—especially small, private ones like The Mount—into enclaves for the elite and privileged, for the well-adjusted and socially savvy.
But there are plenty of people with disabilities and disturbances who are more than capable of succeeding in higher education. What’s more, plenty of these people have the potential to go on and do great things with their lives—and great things for the people around them. Robin Williams comes to mind. So does Theodore Roosevelt. Or Charles Shulz. And, of course, Temple Grandin.
Not to mention, the presence of students who “deviate from the norm” is a great gift to any campus. Not to get too maudlin, but students like these challenge their peers’ assumptions and prejudices. They redefine the word “ability” for their teachers. They are a humanizing influence, opening people’s minds and hearts at a time in their lives when they are making crucial decisions about the kind of person they want to be.
I have children who would absolutely bomb on this survey, but who are earning As and Bs in high school. How would they fare? Or worse, what would they think of themselves when asked all of these questions? I hope they would have the common sense to either lie or leave them unanswered. I would be thrilled if they had the courage to challenge the whole thing and refuse to answer a single question. But I don’t know how they would respond. I can’t help but think of how questions like the ones above could convince someone that he or she really doesn’t belong . . . when it’s just not the case.
Praying for a Turn-Around.
I spent four wonderful years at The Mount. I graduated Summa Cum Laude and went on to earn a masters degree and pursue a meaningful, successful career in Catholic ministry and publishing. Much of that I owe to the education I received there and to the spirit of camaraderie and Christian charity I experienced there. But the first semester of my freshman year was hell. I was homesick and depressed. I felt overwhelmed by the work load. I started off in a dorm room with obnoxious, mean-spirited roommates. I didn’t know how to navigate the social mores of a college campus. It took me a while to adjust, to find my niche, and to settle in. Once I did adjust, however, there was no stopping me.
I would have failed that survey; I would have been encouraged to leave. But that didn’t happen. There were enough faculty and upperclassmen who knew how to help freshmen like me find their way. They embodied the best of The Mount—and the best of the Catholic faith. It saddens me deeply to see this happening at an institution that means so much to me. I can only pray that things will turn around soon.