Pray for Us Sinners . . .

My little girl (10) was having a rough time at Mass this morning. Anxiety about other family members’ struggles became too much, and she couldn’t get seem to stop the negative thoughts. Misperceptions and anxieties then led to her acting out in an angry/sad combination that had begun to wear me down as well. She feels everything so deeply that it’s like she takes on everyone else’s burdens.

But then halfway through the Mass, she asked if she could go to the back of the church, where a little alcove dedicated to the Virgin Mary is (pictured above). “I can’t stand being here,” she snapped.

“Only if you promise to come back,” I said. I didn’t want her just wandering around back there. She grunted in assent, and stomped off. She loves drama.

While she was gone, I took the opportunity to try to reset myself in prayer. Heart rate came down. Breathing became more regular. Lumpy throat diminished. A good start.

Five minutes later, as the homily was wrapping up, she came back. Stepping lightly. Smiling. She gave me a big hug and said she was sorry. The rest of the Mass passed uneventfully. Peacefully, even. I felt another lump in my throat, but this one was okay.

After Mass, I asked her what she did in the back of the church. “I just sat there for a few minutes and looked at the statue of Mary.” Innocent. Matter-of-fact. No drama.

“Do you know what happened?” I asked.

“What?”

“You went to Mary, and she prayed for you. She prayed with you. And Jesus answered her prayers and yours. How else can you explain the dramatic change?”

“I guess you’re right,” she shrugged. Then she went off to grab a donut—as if nothing had happened.

Everything Happened.

Now, it would be easy to attribute my girl’s change to her taking a break. It would make sense if you wanted to say that getting away from her siblings and changing her environment was all she needed to do her own reset. But the change in her demeanor was so dramatic that this can’t be the only answer. Not to mention how little time it took for her to turn around.

Besides, as a Catholic I believe in the Communion of Saints and the special role that Mary plays as our spiritual Mother. In fact, many are the Rosaries I have prayed asking for her maternal intervention in my kids’ lives. And on more than one occasion I have experienced blessings from her myself.

That’s the thing about faith. It doesn’t need to “disprove” the other explanations that may be out there. It’s not as if it’s a zero sum game, where you have to ascribe everything to either psychology or spirituality. Faith is capacious, generous, encompassing. It’s also humble. It doesn’t feel threatened when other possible answers are put forward. The Bible may describe God as a “jealous” deity, but this is not the kind of jealousy it’s talking about.

Every special-needs parent has to find the best way to help his or her children and to deal with the unique challenges that he or she faces. As for me, I can’t imagine walking this road if I didn’t have recourse to prayer. I can’t imagine being left with only medical, psychiatric, and pharmacological answers. If my kids have taught me anything, it’s that there’s more to them than the sum of their various material parts. There’s a longing to belong. There’s a drive toward unity and community. There’s a capacity to love and to receive love that goes beyond simple reciprocity. There’s a “fittedness” for heaven that I can see in their eyes.

So it makes perfect sense that when my girl went to spend time with Mary, Mary spent time with her. And prayed for her. And blessed her.

My girl may not think that much happened during those five minutes. But I know that everything happened.

Both to her and to me.

 

A Down-Under Politician Looks Down on “Those People”

Pauline Hanson Australia

A troubling report from Down Under. Have a look at this article about Pauline Hanson, a senator from Queensland, Australia. In it, she argues, quite inelegantly, for students with autism to be separated from their peers and placed into self-contained classrooms. Why? Because these students are “holding back” the other students who want to learn.

Below are three quotes from her address on the matter, followed by three comments—all of which should be painfully obvious, but apparently are not. At least not yet.

  1. “Most of the time the teacher spends so much time on them they forget about the child who wants to go ahead in leaps and bounds in their education, but are held back by those.”

As if children with autism don’t want to get ahead or are incapable of making leaps and bounds of their own. They deserve more than to be “looked after.” Please don’t assume they are incapable of anything more than this. They’re not burdens needing routine maintenance or looking after.

  1. “It’s no good saying we have to allow these kids to feel good about themselves and we don’t want to upset them and make them feel hurt.”

What a cruel mischaracterization! This comment reveals an ignorance that is both embarrassing and unacceptable in a public official. I have no doubt that parents of autistic children want more for their kids than that they feel good about themselves. Like all parents, they want their children to receive an education, to develop their skills and gifts, and to know they can make a real contribution.

  1. “We need to get rid of those people because you want everyone to feel good about themselves.”

Well, at least her office later clarified that “those people” referred to “do-gooders” demanding autistic children remain in mainstream classrooms. But my sigh of relief was cut short when I realized that she was still talking about “getting rid of” some nuisances and who may be threatening the status quo. Again, the condescending language of exclusion, elitism, and overweening power. As if you can get rid of any parent.

 

Adventures in Airport Advocacy

Airplane! Logo

Every now and then I am reminded of how far we have to go before our world welcomes people with disabilities and neurological differences. Yesterday gave me two such reminders back to back. I was at the airport at the start of a business trip to visit my publisher in St. Augustine, Florida.

“Gawd!”

The first reminder happened as I was standing in line, waiting to board the plane. I spot an older man (~70-75) walking in circles at the gate area. He is cross-eyed and has the pleasant-but-pouty look of someone with cognitive challenges. When his care giver walks him to the gate for pre-boarding, he hands his pass to the agent and declares in a loud, excited voice, “I’m ready to fly!”

The agent smiles back. “Yes you are, sir,” and shares an ill-timed high-five with him.

A beautiful scene. Until the woman waiting in line ahead of me (~60-65) grimaces and turns to her friend. “Gawd, I hope he don’t end up sitting next to me,” she practically spits. “I’m here to relax, not deal with his kind of people.”

Her friend nods. A knife to my heart. A very brief thought that maybe I should say something. But I decide against it. What’s the point? She does not seem the type given to respectful dialogue. Instead, I offer up three prayers: one for the man, one for the woman, and one for myself.

For the man: “Thank you, Lord, for this fellow’s joy. Please keep him safe in your arms.”

For her: “Lord, please help her become more understanding and welcoming. I cannot fix stupid, but you can fix everything. Please help her out here.”

For me: “Please, God, help me be more forgiving. And maybe more brave.”

The Regular Dads Club.

The second reminder happened on the plane. I sat next to a Navy JAG officer and his wife. Both about my age. A delightful couple. Pleasant, engaging conversation with a good amount of back and forth between the JAG and myself. (The wife was a quiet sort.) We talked about our travels: his deployments to Iraq and Addis Ababa, and my six months in Tehran and post-Soviet trips to Central Europe. We talked about school: him at the Naval Academy, and me at The Mount. We talked about politics—after some careful circling to tease out each other’s views, of course. (He didn’t like Trump either, so we continued amicably.)

Then we talked about kids. His daughter, a linguist who was getting her Air Force commission this weekend. His son, who just graduated from Cornell, his second son, with an MBA from Stanford. And his third son, who is graduating from high school with a swimming scholarship to Colorado. He was obviously proud of his kids, but not in a snotty way. He didn’t even humble brag.

Then he asked me about my kids. “You have a lot of kids. Have you got colleges all figured out yet?” When I told him that we weren’t so sure about who would be going and who wouldn’t, he looked puzzled and asked why. I told him about their ASD diagnoses and some of the challenges they face.

It got awkward. He tried to say something like, “Well, not everyone’s cut out for college,” and “There’s plenty of trade jobs out there that need to be done.” I tried to change the subject, but he had essentially checked out. The conversation politely petered out, and a couple of minutes later, he opened his laptop, plugged in his ear buds, and settled in to a movie.

I don’t fault him. He just didn’t know what to say. His world had been circumscribed by success after success—of course, with hard work and sacrifice—and he didn’t have any reference point to orient him to special needs parenting. It’s a shame, too. We were having a good conversation. For a few moments, I was a Regular Dad. I was part of the club. I was just like everyone else.

Don’t get me wrong. I like the club I’m in. It would just be nice to bridge the gap between these two clubs every now and then. 

Even better, it would be even nice if there were no gaps. No separate clubs at all.

That’s why we need to keep advocating.

After the Intake

Notebook Writing

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.

Poignant Reminders.

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.

Mission Accomplished.

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.

Thanks, Mom

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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