Good Golly, Miss Molly

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See that little ball of cuteness on the left? No, no, not the cat. The little puppy in my daughter’s lap. That’s Molly, the latest addition to our household. (For those of you who are keeping count, that makes 6 kids, 5 cats, 2 dogs, and 1 fish. That’s right; our four-legged children now outnumber our two-legged children.)

Why another dog? Because we like chaos, that’s why. At least, that’s what more than a few people must be thinking right now. But there’s a method to our madness. Molly is going to be our family’s therapy dog. We had been toying with this idea for a number of years, but recent events have convinced us that having a therapy dog is more than just a neat idea. It’s a necessity. Too many of our kids are dealing with anxiety and depression in addition to their ASD. Too many of them find emotional regulation a challenge. Too many of them lead too isolated a life and need help in getting out of themselves.

Molly is a mix between a Cavalier King Charles Spaniel and a Cocker Spaniel. That means that she is pretty smart (Cocker), but also a love bug (Cavalier). It means that she will be perfectly content to sit in your lap for hours on end (Cavalier), but she will also love a good romp around the back yard (Cocker). Our hope is that we will be able to train her to recognize when one of our kids is getting too agitated, and feel free to go over to him or her and offer comfort and friendship. We also want her to sense when one of our kids needs a warm, affirming cuddle. And, of course, we want her to not pee in the house.

This is much more than sit, heel, and roll over. Our goal is to get Molly to the point where she can wear a vest and be recognized as an “emotional support” animal. We want to be able to take her out in public, bring her into stores, and even get approval for her to accompany one of our kids to school. So there’s a good deal of work to be done.

Of course, none of us is an expert in training puppies. Which means we’re going to need some serious help. Fortunately, Katie found a married couple who have experience working with kids on the autism spectrum and their dogs—and they’re willing to come into our home to train both the dog and us. This is so important. Training out on a farm or in the middle of a PetSmart can only go so far. Molly will have to become very comfortable performing her job in our home, and it will help our kids immensely if they learn about Molly in their own environment.

Oh, and these trainers are going to work with our older dog, Roxie, too. (That’s her below.) According to them, Roxie is going to train Molly as well, even as she gets some training herself. After all, she speaks dog! So by the end of the training—months and months from now—we’ll have two support dogs.

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So stay tuned. I’ll be giving you updates every now and then. Besides, she’s so cute!

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

The Ballad of the Bedeviling Bedroom

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See that picture up there? That’s my boy (fourth child, third son, 11 years old), trying to go to sleep in his new bed in his new bedroom. We moved just about everyone around this past weekend. Usually, I would balk at such a thought—ASD kids have a hard time with transitions. But this was a pretty important move for a couple of reasons that I can’t get into right now.

Anyway, this poor boy was having a hard time with the change. He was excited to be moving to his older brother’s (third child, second son, 13 years old) room. The two of them had been roommates a few years back, and they had a blast together. But once he got into the room, he couldn’t cope. Within five minutes of Katie and me praying over him and giving him a good night kiss, he was back in our room, eyebrows knit, hands wringing, voice aquiver. Continue reading

A Field Guide for Holiday Visitors

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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.

  • Please remember that the Hallmark Channel makes its money by shamelessly peddling its special form of mendacity. No one’s dining room looks like that, and certainly not ours. We’re too busy running to therapy sessions and prepping for IEP meetings to dust every other day. Or every other month. Or ever.
  • No, the dining room chairs do belong in the living room. In front of the computers. Which get tons of use. Which is why the chairs are battered and stained. And why some have the stuffing pulled out of them. Nervous, stimmy, perseverative kids tend to do that sort of thing.
  • If you find yourself trapped in a heavily one-sided conversation with one of the kids, remember that nonverbal clues don’t work. Use your words. Find some hook to change the subject. Unless, of course, you enjoy lengthy discourses about the relative merits of water type Pokémon versus grass types in the Kanto Region.
  • Please try not to make any references to any popular music. Or Rap music. Or Disney movie soundtracks. For some reason, all my kids have convinced themselves that they love metal music. Because their oldest brother blasts it into his ears to help him deal with the noise and chaos of his high school hallways.
  • Sorry, no Turkey Bowl in this family. A few of them watch Notre Dame football, but for the most part, these kids would fit the (stereo)typical definition of nerds or geeks. So instead of football, how about a rousing game of Super Mario? Or two hours binge watching the latest YouTube video game walk-throughs from Chuggaa Conroy?
  • Yeah, he spins around like that sometimes. Or hops. Or planks. He’ll be fine.
  • Don’t be offended if one or more of the kids disappears without notice. It isn’t you; it’s her. She’s probably looking for a quiet place to unwind. Just shrug your shoulders and move on to another child. We’ve got six of them, so there should be plenty to go around.
  • Don’t be surprised if, when you ask one of the kids what he does besides school, he replies, “Therapy.” He’s being honest.
  • Yes, he often sits upside down like that, with his head near the floor and his feet in the air. Or athwart both arms of the chair. Or draped over the back of the sofa. And yes, he’s very comfortable doing it.
  • Yes, I know he’s taking a bath right before dinner. That’s his safe place when things get too noisy. He’ll be out in about an hour.
  • Pardon me while I dole out the kids’ medicines. I have to take care of dinner and bedtime, so it’ll take a little bit longer than my morning routine. I’ll be back in about 10 minutes.
  • All compliments about our parenting will be graciously accepted by the management. All advice will be graciously ignored.
  • Why yes, I’d love another glass of wine. How did you know?