Behold, dueling breakfast sites! Continue reading
Behold, dueling breakfast sites! Continue reading
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.
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.
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
When I was in high school, I was really into science fiction and fantasy literature. I guess I still am, but I don’t usually get the time to immerse myself in a good novel these days.
Anyway, there was this one fantasy series I read in high school called The Chronicles of Thomas Covenant. The author, Stephen R. Donaldson, imagined the books to be a kind of dark inversion of Tolkien’s classic The Lord of the Rings.
Each book in the series opens with the (anti)hero Thomas Covenant experiencing some kind of crisis that mars him physically just before he is transported to a realm known as The Land. While in The Land, Covenant is quickly healed of his wounds and ends up reluctantly accepting a perilous quest. Lots of action, tension, magic and romance ensue—often quite gripping.
Then, as Covenant to the climax of his quest, something happens to him. He is caught in a battle, perhaps, or a curse is uttered against him. Whatever it is, it leaves him with wounds exactly like the ones he had just before he entered the Land. It’s at this critical juncture that he finds himself back in our world in the exact same condition he was at the start: haggard, numb, bloodied, and exhausted.
A Magical Christmas.
Well, that’s what I felt like the week after Christmas. We had had a rough few days leading up to the holiday, and I was feeling pretty beat up. Nothing seemed to be going right. A few of the kids’ anxieties had gone through the roof, issues at school mushroomed, and a few tight deadlines at work led to late nights at the computer.
But something strange happened on Christmas Day, and it lasted a few days afterward. There were no melt downs. No tantrums. No OCD or anxiety or disrupted sleep. It was absolutely delightful! My own anxiety diminished. I was sleeping better. We even took most of the kids to my brother-in-law’s for a Christmas gathering, and I had a blast because it was completely uneventful. I was sailing along, enjoying life in ways I had forgotten about in the previous weeks.
So far, so good. But then by December 30, things began sliding downhill again. First one kid went south. Then another. And another. Slowly over the next three days, we re-entered our “normal” zone with the melt downs, the perseveration, the communication glitches, the anxiety—the whole nine yards. Even work issues flared up again!
By lunchtime on New Years Day, I was back to my usual self: weary, furtively looking back and forth to see who was going to erupt next, steeling myself for the inevitable, even feeling that familiar lump in my throat after helping one of the kids through a tough time.
So Sunday had come, and I was ready to start back at work as if nothing magical had happened at all. Just like Thomas Covenant.
Now, before you go feeling sorry for me—or telling me to suck it up, Buttercup—let me say this: I suspect that many parents of special-needs kids can relate to this cycle. On one level, every parent appreciates the fun times, the easy times, the magical times. But there’s a poignancy when it happens for special-needs parents because for those few short days, they know what the rest of the parenting world feels like on an average day. They get a glimpse of the “normal” that most parents experience most of the time, and it feels good. But then they return to their own special “normal,” and they have to put on their big-boy pants again.
I’m not going to sugarcoat it. It’s hard. It’s draining. It’s isolating. It takes so much more time and energy and stamina to stay on top of your kids’ needs and challenges. Sometimes you can want to curl up in a corner and not come out for a few days.
But we can’t.
Let me make one other thing clear: Katie and I know that it’s not the kids’ fault. We don’t resent them for who they are or for their needs. Much, in fact, of what can weigh on us is watching our kids go all this turmoil. We wonder what their future will look like. We worry if they will be able to live on their own after we’re gone. We ache for them to be rid of their painful challenges. And we feel helpless.
So when you see a special-needs parent looking unusually rested and refreshed, know that a lot is going on underneath the surface. Know that sooner or later they’re going to go through a Thomas Covenant-like transformation. So go easy on them. Maybe even offer to help them when the need arises.
Well, here we are again, on the verge of another holiday season. Warm feelings abound this time of year, and everyone feels the urge to form unusually large gatherings and consume massive portions of food and drink. There’s something about the earlier sunset and the growing chill in the air that puts people in a nostalgic, romantic mood. Either that, or thinking about the cold and darkness of death makes them want to huddle together for protection. Whatever the reason, there will be family gatherings galore over the next month or so.
And then there are the ASD families. If you know anything about autism, you know that people on the spectrum can have a hard time with sensory overload. Noises and crowds can make them shut down or act out. Or both. Changes in routine are unsettling. The different smells, tastes, and textures of a holiday meal can be overwhelming. Even when they’re surrounded by people they know and love, they’re still surrounded. And that doesn’t feel good.
All of this got me thinking about how different our family can be—and how different we may appear to people who come to visit. Mind you, most of our relatives and friends are familiar with our dynamic, but there are a few outliers. Not to mention, new friends may end up dropping by. So, with no malice or prejudgment intended, I decided to revisit and revise the guidelines I had written a couple of years ago for holiday visitors to our home.
A Field Guide to the Zanchettin Holiday Home.
You know, when I tell people about our family’s unique make-up, I often get variations on one familiar response. It’s usually a combination of incredulity and well-intentioned pity. “Six kids? And they’re all on the autism spectrum? Wow, that must be so hard!”
Sure it’s hard. And challenging. Even daunting at times. But not to worry. We’ve got this. Why? Because special-needs parents have a very particular set of skills. They are skills we have developed over time as we have learned how to assimilate to our new normal, articulate the facts about our kids’ diagnoses, and advocate for them far and wide.
What are these skills? They are too many to count, actually. But the list below contains some of the more important ones. Take a look at them, and then ask yourself whether incredulity and pity are the best responses.
So there they are: twelve key skills of a special-needs parent. As you can tell, we don’t want pity. We’re doing quite well without it, thank you very much.
However, if you wanted to give us cash, we wouldn’t object.