Monica Holloway on Parenting a Truly Anxious Child

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The autism spectrum is a dynamic place -- our kids fall in so many different places along it, and those locations can shift with age. Author Monica Holloway -- whose book Cowboy and Wills I frequently recommend -- is the mother of Wills, a thirteen-year-old boy whose diagnosis recently changed from autism to Asperger's. Wills has also wrestled with severe anxiety since he was an infant. I recently spoke to Monica about Wills, how he's doing now, how he's learned to self-manage his anxiety, and the supports and approaches that have helped him become "a happy child."

How is Wills Doing?

He's doing really well. If I had really known who he'd be today in these later years, I could have relaxed a lot earlier on. We're really fortunate, I'm really thankful every day that he's done so well. He's a perfect gentleman, Couldn't be sweeter.

He just turned 13, just started seventh grade, which means we're doing the adolescence thing. We're reading everything we can on Asperger's kids, high functioning kids with autism, kids in their teens. I'm really trying to help him understand what's going on with his body. I'm starting to go through menopause so I'm freaking out more than he  is -- we're doing the hormone shuffle together.

His big thing is baseball now. When he started, he couldn't connect the bat to the ball. He asked us to get him DVDs of World Series games, and he enjoyed watching them and talking about them with his dad. What we didn't realize is he was studying the players -- how they stood, how their shoulders went back, when they swung. Then we took him to little league tryouts, even though he hadn't ever really caught a ball. We explained that he was new, and older, and some of the kids had been playing for a long time and we just wanted him to be aware of that. We also took him to an area that had a Challenger league, just in case -- but he got drafted right away, and hit a grand slam in his first game!

So, underestimating Wills is really not bright. And I know this. I asked him "where did you learn to play?" and he said, "well, you got me all those videos." It was like how I described in the book, when he was a baby: he would not walk, he did not crawl.  And then, all of the sudden, one day he just got up and came around he corner into the kitchen, and looked back at me as though to say, "Aren't you coming?" I was in shock -- I'd never even seem him standing! He did everything that way, so it shouldn't surprise me. His therapist Katherine says his working through things he's been afraid of or hasn't been interested in before -- and then suddenly he can do them -- that it's part of his autism.

In baseball, he's learning all these fantastic things about being a guy -- about taking it when his teammates get on him if he messes up, and getting on them, too.

That's huge! The whole team social dynamic!

It is huge. It's what his therapist Katherine has pushed us to do for years.

He's now in a school with kids with learning differences, we've never done that before, it was time. Academically he's struggling a bit, but socially he's never been happier -- he's comfortable playing with his peers, where he used to play with kids two years younger, almost every time.

Sounds like he's really able to independently manage his anxiety?

Yes, most of the time. Our goal now is to help him learn to say something in the moment.

In the school play, he got cast as a girl's boyfriend. And she said "Oh, no!" and he was devastated -- but then he said, "Look, there are lots of people who are good friends of mine. And if you got to know me better, I don't think you'd have that reaction." The girl's reaction was, "I'm not kissing you!" And Wills said, "If you don't want to be my girlfriend in the play, how can I want to be your boyfriend in the play?" The teachers helped the two work it out -- but the teachers were really excited, and called to let me know that he's really learning to handle these situations on his own.

It's great that he's so self-aware.

I think it's part of the benefit of being in therapy since he was 18-months-old -- we were constantly helping him narrate his feelings, and he came to realize that only good things could come from telling us how he felt; we would understand him better, situations would get better -- he didn't  have to be isolated in his anxiety.

Are animals still a touchstone for Wills?

He doesn't need his animals out in the world with him. We have two dogs -- Buddy, from the end of the book, is now 4 1/2-year-old, and we just got a puppy, Leo Henry. We also have two rescued rabbits, a hamster, and a hermit crab. I usually end up taking care of the animals -- but if we travel relatively locally, to Big Bear, or San Francisco, he gets very anxious about being separated from the dogs. But in our daily life, going in public restrooms, or restaurants -- he doesn't need his dog for any of that anymore. I'm really thankful -- those were really hard times.

Has Wills been around a lot of kids like himself?

He used to go to social skills groups, and if he would see another kid have a behavior, like stimming -- which he's never had -- he'd get anxious about it, and tell me, "I think that's going to be me." And then we talked about it for a long time. Now we have nothing like that. His friends are really half-and-half: typical kids from his old school, and kids with autism and other special needs from his new school.

He's really learned about the range of kids with disabilities, and it's been fantastic for him. A kid recently toured the school who was in a wheelchair and had a guide dog, and Wills said, "Oh, please let him be in my class!" He also volunteered to push him around during the tour. It's been an amazing experience for a kid who's used to worrying about himself.

We've also had such a breathe of air since the book, with people writing and emailing Wills, and leaving comments on the book's Facebook page -- he's really touched by that. And sometimes, at my readings, if he gives me the signal that he's up for it, I'll say, "And there's someone here who wants to talk to you about autism. His name is Wills." Everyone always stands up for him -- he just can't get over it -- he keeps saying, "Thank you so much! I've had autism all of my life, and it's nothing to be afraid of. Comments or questions, please."

When he was first diagnosed, I was so devastated, I was consumed with worry about how people would treat him. I think every parent has felt that -- the shame, the "Not my child," because people stare and you feel so alone. But now, I would not change him for anything on this earth. If anything, I would just want to know that he'll drive and go to college, but I wouldn't change him. He's a happy child.

I'm really surprised when I go into classrooms and talk to kids about autism, I'm surprised by how much judgment there is. My hope and dream is to educate as many people as I can about autism -- because I didn't know about it myself, didn't realize it was this whole spectrum. I was so full of grief about so many things -- just watching the other kids at his mainstream school, and wondering, "Why can't Wills have a moment like that?" And now he is having moments like that! But I didn't know if that he ever would. It was very hard, very sad -- especially since he was trying so hard.

That's one of the reasons I made an effort in the book to be honest about the way I felt.

Have you ever tried medication for anxiety with Wills?

I was very resistant at first. And no one ever really brought it up, because he would get in new situations and then improve. But at the beginning of fourth grade, things starting shifting pretty fast -- it gets more sophisticated, socially -- there's more teasing, for instance. He started to not really understand the social interactions with these kids he'd been with since kindergarten, and they weren't understanding him, either. Not that anyone ever made fun of him -- but kids would do things like take the ball from him during dodgeball and say, "Don't worry, Wills, I've got this one," which was really degrading, and we had to speak to the PE teacher about it, and let him know that Wills needed to be the one to thrown the ball, even if he missed.

It was a very hard year. Kids would go out to movies, but their parents would know that Wills couldn't go because the noise and all the people were too overwhelming for him -- so he never got asked, and that hurt his feelings. We went into his class and talked about why it was important for him to throw the ball, and why he can't go to movies. But he didn't settle down afterwards -- his anxiety was keeping him up at night. So we took him to a child psychiatrist, who put him on literally a crumb of Celexa -- I was a wreck about it -- but it was as though someone had put their hands on his shoulders. He stopped clearing his throat, he settled down into his body, stopped pulling his hair.

We also changed schools, which was really hard. But he's been on that same low dose for almost two years.

It's great for people to hear how cautiously you approached medications, but also how helpful it was when you did.

I wouldn't have done it earlier, his body was just too little. And I've been on Celexa myself, so I know what it does, and that made me cautious, too. And I was also worried that we'd have to keep increasing the dose, because that's what usually happens. But we really haven't had to, even though he's now twenty pounds heavier.

What are some things you wish you'd known about supporting kids with anxiety, before you had Wills?

I realized early on that I had a lot of anxiety myself, and that that was not helpful to Wills. That's when we started to assemble a team around him. Preschool was literally Hell on earth -- even though they were so kind and wonderful -- he struggled so hard, he was so anxious. The teachers and directors taught me to help him dictate what he was feeling. We had a dog named Halle at the time, and he would address his feelings to her -- and have me write cards that said, "I miss my Mommy, and Halle misses her mommy, too." The more he would dictate, and the more we would all write it down and re-read it to him, the calmer he got. And that's how we got into the habit of narrating what we're doing, for example, "We're going to go outside, we're going to get in the car, and we're going to drive down Montana street." And if the street was blocked, I'd just say, "Oh no! Montana street is blocked!" And I'd stop the car, get the map (maps of streets were something he knew really early on), and ask him, "Which way should we go?"

As long as he was constantly included in what was going on, he'd be okay. But in the classroom, there were always surprises, like a new student, which he just hated (though now he loves surprises). And sometimes, in those situations, he wouldn't be able to settle down, and I'd have to come get him. Most of the time, I'd sit outside the preschool in my car -- where I did and still do a lot of my writing, it's my office -- where he could see me. So he knew Mommy was there, but he had to go to preschool. That really helped with his anxiety, a lot, when he was really little.

As he got older, he didn't want to communicate anything negative, about being sad, hard things happening at school, or if he was mad at me -- but getting him to talk about those feelings changed everything, in terms of his anxiety. Everything. We would use Cowboy, his dog. I'd say, "Cowboy really had a hard day today!" and he would say, "Oh, I know," even though he hadn't been there -- and then he would start talking about himself, through Cowboy. I wouldn't react at the time, I'd wait a couple of hours -- then I'd say, "You know, when we were talking about Cowboy, I think you might feel that way, too." Then he would start instantly crying, and say "I don't want to talk about it." I'd tell him, "If you don't talk about it,  it will always be inside of you, and you'll always be alone with it." And after we talked -- it didn't matter what time of day it was -- he'd sleep for an hour or so. And when he'd wake up, he'd say, "I feel so much better."'

Another thing that helped was a schedule. My whole family room wall used to have different spaces for what month it was, what day it was, but only one day at a time -- I'd get up early and put the schedule for that day together. That way, if we had a change in the schedule -- if we were going to meet a friend at 1 instead of 10 -- he could go to the schedule box and move the "meet friend" card the new time slot. He might cry because his schedule had changed, but as soon as he got the card in place, he would look at it for a while, and then he would walk away from it, and we would go on with our day. It really helped calm his anxiety -- it was concrete, with pictures and words that he could recognize and move around.

There are still things -- he does not want to talk on the phone, except to my sister, he's always talked to her. And his friends were calling, but now they're texting, which is great -- that helps with his spelling, it helps with his fine motor skills.

There are still things that come up for him, where his autism is very present, and it's shocking to me when that happens. But it used to shock me when his clarity came. And it'll be interesting, the older he gets.

 

Bloggers on Monica's book Cowboy and Wills:

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Shannon Des Roches Rosa is grateful for Monica's tips on managing anxiety, and will likely start using them on two-thirds of her children. She writes and edits at CanISitWithYou.org, ThinkingAutismGuide.com, and BlogHer.com. Her personal site is Squidalicious.com.

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