About Leo Zanchettin

Hi there. I'm the father of six amazing kids, all of whom are on the autism spectrum. (I know, right?) I hope that through this blog I can shine a light on what it's like both to live in a large family and to have autism as a major part of our lives. I hope that my stories, musings, and observations paint a picture of the fun we have together and the challenges we face. Please note that this is a work in progress. If you don't like what you see, stick around for a while. I promise it'll get better as I learn what I'm doing!

A Perplexing Plethora of Plushes


With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.

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.

 

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!

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.

 

No, It’s Not Okay

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So I met my son at a local minor league baseball game today. It was a happy coincidence. Our company was taking a day at the park as a part team-building, part pressure-relieving event, and my boy’s sixth-grade class was taking a field trip. So after spending some time with my colleagues, I went looking for my boy.

It wasn’t hard to find him. He was the only kid wearing a long sleeve sweater. It was in the upper 70s and sunny, so all his classmates were in shorts and tee shirts. But there he was, seated at the end of his bench, squinting in the sun, his head darting left and right with that vague here-but-not-here expression I’ve come to expect when he’s in a crowded public place.

Okay, I Guess.

As soon as he saw me, he smiled and gave me a big hug. He buried his head in my chest and rubbed it back and forth while I scratched the top of his head. It’s our thing.

“How’s it going?”

“Okay, I guess,” he said.

“Are you enjoying the game?”

“Not really. I know balls and strikes and home runs, but I don’t like baseball so much. It takes too long.”

“Okay, so what are you doing instead of watching the game?”

“Oh, nothing, just sitting here watching my friend play on his 3DS.” [He wasn’t watching all that intently. Just glancing over his shoulder every now and then.]

He seemed perfectly content to sit there in the background, sweating in the sun. He wasn’t engaged or absorbed in anything. He was just “there,” innocently taking up a seat and waiting for his teacher to tell him it was time to go back to school. I learned that he had been there for more than an hour already, and he wouldn’t be leaving for about another hour. And he spent the whole time alone, in his own world. No kids were seeking him out. No one seemed to care that he was on his own. His guidance counselor, who knows about his diagnosis, was sitting a couple of rows behind us, and even she seemed oblivious.

Happy Compliance.

It broke my heart. It was the first time in a couple of years that I saw him in his school element. I knew he had been like that in elementary school, but I thought he was coming out of himself. Not so much.

The thing is, it didn’t take much for me to get him involved. We watched the next few pitches and cheered each hit by the home team. We analyzed each misstep. We clapped at two home runs and followed the foul balls that flew over the net and landed in the stands. It wasn’t hard.

I also noticed that he had a packet of worksheets with him. They were filled with STEM questions he could answer for extra credit. He had done none of them. “My grades are good enough,” he told me. “I don’t need to do it.”

“Come on!” I said. “We can knock these things out right now. Don’t you like seeing your grades go up?”

“Okay.” No resistance. No fight. Just happy compliance.
So for the next 20 minutes, we tackled the problems. “What is the area of the baseball diamond?” “If Team X has lost three times as many games as they have won, out of 72 games, how many games did they lose?” “If you could interview the pitcher, what would be two STEM-type of questions you would ask him?” Simple stuff.

He happily dove into each problem and did a great job. (He is an honors student, after all.) But he wouldn’t have done anything if I hadn’t have been there to get the ball rolling. He would have remained static in his thought bubble, because no one seemed to care.

A Shove and a Nudge.

I suppose I shouldn’t care either. After all, my son was content. He gave no indication that he was feeling lonely or misunderstood or even bored. So why make a deal out of it?

Maybe it was the fact that no one seemed to notice that he was alone. Maybe it was the glassy-eyed look he had when I first found him. Maybe it was because I hate being passive myself; I always have to have something “useful” to do. Maybe it was because I got a brief glimpse into what his future might be like, and it scared me.

Whatever it was, I know one thing: I think it’s time to start planning for the next school year. Bone up on disability education law. Get to know a couple of his teachers. Observe him in some classes. Sketch out what an IEP might look like for him—and get ready to fight for it.

Because I don’t want life to pass my son by. I don’t want him to miss out on the relationships and the learning and the enjoyment that could be his if someone were to just welcome him. Because he’s a good kid. A bright kid. A kind kid. He should have the opportunity to let his light shine. All he needs is a little nudge.

And that means I’m going to have to do a bit of shoving

Which I don’t mind at all.