Autism and Religion

My father, who lives about 600 miles away, is coming up for a visit this weekend. We try to see each other at least once a year and have a good relationship. We do, however, differ in our religious views and practices. My dad is an Eastern Orthodox Christian, and I – how to put this diplomatically? – am on my own path.

I wanted my kids to have a basic knowledge of historical biblical events and an acquaintance with the stories I had grown up with. After all, they are ingrained in so much of our culture. When someone mentions Moses and the Ten Commandments, David and Goliath, Adam and Eve, or, of course, Jesus and Mary, I want my sons to at least be familiar with them. Nigel loves the historical aspect of the Bible and any accounts of natural disasters and plagues. Aidan, I think, likes being able to assure his great-grandmother, a lifelong Catholic, that he knows about the Bible when she gives him a book on the lives of the saints or the real story of Christmas. She must figure that since we don’t attend church, the kids would not know about these things. Regardless, Aidan graciously accepts whatever book she brings for him.

But Nigel is not able to understand that religion is personal, that people could easily be insulted if he is not reverent about their beliefs. On his own, he has researched and espoused evolutionism; he values its scientific basis. It does not surprise me that it appeals to him, due to his own evolution within the parameters of autism. Even so, he still has some room for God in his belief system. “It’s kind of half-and-half,” he says. “I’m undecided.” And that’s okay. He has enough to figure out with learning algebra, writing essays, processing sensory input, regulating his emotions, and navigating the social realm of his peers. Trying to understand religion might be too much for him now. Yet, biblical history, like all history, fascinates Nigel.

Several years ago, we had visited my dad at his home, and at the time, his living room also functioned as a part-time chapel for his church group. The room was filled with lavish icons on the walls, crosses, and prayer books. One icon depicted Jesus carrying the cross on his back. Nigel took it all in, but did not say anything as his verbal skills were undeveloped then. A few years later, my dad moved, and this time when we went to visit, Nigel commented on the icons. “What’s with all the God stuff?” he asked me, in no way realizing that his question had been worded irreverently. I explained to him that it was part of Grandpa’s religion and that it was very important to him.

And so, in an effort to show his grandfather that he respected his beliefs, the following year when Grandpa came to visit us at our house, Nigel had an idea. He must have wanted to surprise everyone, because he didn’t tell me about it ahead of time. Shortly after my father had arrived and was in the guest room unpacking, I walked into my room to get something and saw, through my bedroom window, some movement in the backyard. It was Nigel. He had taken some boards from the old backyard fence that had recently been taken out and nailed them together to form a life-size cross. And he held it on his back over one shoulder and, hunched over as he had seen Jesus in Grandpa’s icon, was slowly carrying it across the backyard.

My father has always been very accepting of Nigel’s autism and supportive. But he doesn’t always understand the myriad ways in which autism affects Nigel. I didn’t want him to see Nigel with the cross because I feared that he would think that Nigel was making fun of Jesus. Nigel, at age 10, did not have the capacity to make fun of anyone or anything, but when you aren’t able to spend much time with an autistic child, you don’t always realize that. You wouldn’t know how differently he thinks compared to other kids.

So I sprinted outside and told Nigel that I knew he was trying to be respectful, but that other people wouldn’t see it that way. And I told him that I didn’t want him getting splinters or poking himself with nails. He looked confused. “I’m being Jesus,” he said. “Yes, honey, I know. And you’re doing a really good job. I’m sure Jesus would be pleased. But he wouldn’t want you to get hurt on the rusty nails.” Nigel seemed to agree with that. We set the cross on the woodpile and went back in the house. And I thought, isn’t that what Christianity is really about? Being Jesus? No matter what path he’s on, I can’t help but think that Nigel’s got more figured out than I could ever realize.

Making His Move

When we last heard from the hormone-addled, resident autistic teen about the subject of dating, he was coming up with a plan for the parents of the girl he’s interested in to become familiar with him. And the autistic teen’s mother was encouraging him to wait until high school.

Well, folks, that waiting period is nearing its end. Eighth grade is almost over. And Neil has begun to make his move. He informed me last week that he had “finally” told the long-time object of his affection how he feels about her by writing a note. I asked him if he hand-wrote it or typed it, and he said that he hand-wrote it, which must have been quite an undertaking for him.  He said that he wrote of her “beauty and grace,” and that he feared, in telling her, that she would feel uncomfortable around him. He wrote that, too. Holding my breath, I asked him how Stephanie responded to the note. “She was okay with it,” he said. “She’s still my friend.” And then he nonchalantly bit into an apple and walked out of the kitchen.

Here’s the back story: For months, Neil has talked about this girl. In the early stages, it was “She understands my difference.” This was when he still attended the middle school full time. Then, after I began homeschooling him, he would go for walks in the neighborhood and stand in front of her house, hoping she would come out to talk to him. A few times he knocked on the door, and her parents politely declined. He would film his Lego videos in his room, and I would hear him say in an announcer’s voice the names of the people starring in the film; Stephanie always received top billing. When I would pick him up from his weekly social skills class at the middle school, he asked me if we could find Stephanie’s class so that he could say hello. Since, at the time, he was not officially a student there, we were told he could not.

And then, six weeks ago, he began attending the middle school again, part-time. I would pick him up from his half day and ask how lunch went, since that time is unsupervised, and he used to be targeted then. “Fine,” he would answer. “Stephanie sat with me. I think I’m in love.” I wanted to hug this girl, to thank her for being so kind to my son. But I also wanted to gently prepare Neil for the disappointment of unrequited love. I would tell him that he had to remember that people don’t always have the same feelings toward each other, that someone might want a person to be their boyfriend or girlfriend, but that person just wants to be friends. I told him that that happens to people of all ages, including adults, whether they’re autistic or not. It’s just a part of life.

What I didn’t know when Neil told me about giving Stephanie the note was that there was a school dance two days later. And Neil wanted to go. I’m sure he had hoped that Stephanie would have wanted to be more than just friends for the occasion of the dance, but even in the face of polite rejection, Neil still wanted to go. I was very proud of how he was handling his emotions in this situation – he was showing exceptional maturity for someone with a lower emotional age. And that is why I felt confident letting him go to the dance without an aide. He had attended another dance three months before, but the school required him to have an aide with him, and things went well. Neil remembered that stipulation. When he asked me about going to the new dance, he quickly added, “I asked the deans and they said it was okay that I could go without M,” (his previous aide). And my heart soared, not only because the deans had approved it, but because Neil had thought to ask. He took it upon himself to make something happen that was important to him. And he did it the right way.

I still felt a little nervous about him attending the dance alone. But he excitedly told me that it wasn’t just a dance – there would be an obstacle course, video games, and other activities. I suggested ear plugs for the two-hour sensory bombardment. “No, Mom, I want to be like everybody else.” So I dropped him off with five dollars and came home to wring my hands, waiting for the phone call about some behavioral incident.

But there were no calls. I went early to pick him up, so that I could park near the entrance. I regretted not reminding him to come out front as soon as it was over. I had, however, rehearsed with him what he would do if anyone came up to him and started harassing him. I dreaded the thought that, here he was, trying so hard, and someone who enjoyed giving him a hard time would just come along and get him riled up and ruin the evening. I envisioned walking up to the double doors to pick him up and one of the teachers would pull me aside and tell me about a “situation.” Ugh.

But less than a minute after I walked up to the double doors, Neil came striding toward me from another direction, flushed and happy. He had won with the fastest time on the obstacle course. That’s great, I told him. Did you see Stephanie? “No, I don’t think she was here. But I still had fun.” Did anyone bother you? I asked tentatively. “No, Mom. No one bothers me anymore.” I hugged him and said, “I’m so glad. And I’m glad you had fun tonight.” Then I drove home, wanting to laugh and cry at the same time.

 

April Announcements, Vol. 3

One more Autism Awareness Month announcement to slip in here!

Kyle’s Treehouse recently launched a new initiative for April’s Autism Awareness Month: Autism151, 150 stories of hope, strength and inspiration.  Autism151 focuses on the positive side of the autism experience by creating a single location where families can share stories of strength, inspiration and success with one another, giving them even more reasons to hope. Where does the name Autism151 come from?: 1 in 150 children are diagnosed with autism. Until now, there have been few resources for those living with autism to come together as a community to share ideas, resources and most importantly–success. Autism151 is about inspiring families with stories of success. It is a vital resource reminding families that they are not alone in their struggles and helping them celebrate their achievements. The campaign’s goal is to gather 150 inspirational stories by April 30, 2009 and post them online.

Kyle’s Treehouse and Autism151 are calling upon you to tell someone you know coping with autism to share their story of hope and join the movement at http://autism151.com/. There are wonderful stories of hope everywhere. Kyle’s Treehouse and Autism151’s goal is to bring them together in order to share them with each other and the world. So please visit http://autism151.com/, upload your video story and share it.

Visit. Upload. Share. Autism151

150 Stories. One Community of Hope.

Staying Home Alone

“Independent functioning is not simply the ability to do something, but also the ability to decide what to do. It is not only the ability to take care of oneself. It is also the ability to take responsibility for oneself.” — Elaine Heffner (20th century), U.S. psychiatrist and author

Michelle at The Sneathen Family Site, one of the blogs I read regularly, posed an excellent question at the end of a recent post. She asked, “When, if ever, have you let your kids stay home for short periods on their own?” And since one of the most common searches used to find Teen Autism is “should an autistic teen be left home alone,” I thought I would do a search myself. There are plenty of parenting sites out there that offer guidelines for non-autistic kids and staying home alone. Given the fact that I couldn’t find much when I added autism into the mix, I figured that this subject warranted a post.

I started letting Nigel stay home alone for short periods starting at age twelve. We began with 20-minute increments and worked our way up to a few hours. I felt comfortable with that only after he had shown proficiency in the following areas:

1) Being able to call out if necessary and taking periodic check-in calls from Mom

2) Not opening the door for anyone, unless it’s the neighbor yelling “Fire!” Fortunately, that second part has not happened.

3) Knowing how to get out of the house quickly and where to go if something blows up

4) Staying in the house the entire time unless something blows up

5) Not doing anything that could cause anything to blow up

I reluctantly admit that we have had problems with items 4 and 5 on that list, resulting in the suspension of staying-home-alone privileges for periods of time. Apparently, the euphoria of being home alone sometimes causes my son to climb the 40-foot high tree in the backyard or set the couch cover on fire using a magnifying glass. Thus, he is also working on impulse control. For an autistic teen yearning to be independent, this is quite motivating, because he detests having his home-alone privileges revoked.

So, basically, what it boils down to is a combination of verbal ability and safety awareness. If Nigel did not have the ability to use the phone in an emergency, I would not consider leaving him home alone. His safety awareness has been developing for the past few years, and even though he “forgets” the home-alone rules once in a while, he is constantly improving. Someday, I may even return his magnifying glass to him.

Just Another Teenager Mowing the Lawn

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Just another teenager mowing the lawn? At first glance, perhaps. But a closer look reveals a secret weapon or two:

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Anyone who knows Nigel knows that mowing the lawn is not an easy thing for him to accomplish. Here’s what’s working against him:

1) Sensory issues, the obvious offender. Notice the ear plugs to help muffle the sound of the mower and the sunglasses to fend off the glare of the sun.

2) Nigel’s fear of bees and other flying insects. Notice the long-sleeved shirt and jeans even on the warm day.

3) Nigel’s inherent lack of understanding about household responsibility and his lack of desire to contribute. Notice the hurried, haphazard zigzagging direction that he’s taking.

What motivated him to forge ahead in spite of these obstacles? Seeing other teenagers in the neighborhood mowing their lawns. Nigel’s desire to “be like everybody else” was motivating enough for him to brave the elements and take some responsibility around the house. Of course, I have to realize that this may be just a one-time engagement. After about ten minutes, a wasp came “dangerously” near him, causing us to renegotiate what constitutes a mowed lawn. But hey – under the circumstances, I’m pretty impressed that he even tried. He told me that he’d try again on a cloudy day, because “bees don’t swarm so much on cloudy days.” I’ll take his word for it. Happy Spring, everyone!

The Wonderful Thing About Tigger

My son has memorized the dialogue of many movies. Star Wars, Indiana Jones, Jurassic Park, the old Pink Panther movies with Peter Sellers, various Scooby Doo adventures, Winnie the Pooh, and numerous other Disney films. Over the years I’ve often wondered if this ability to memorize movie dialogue crosses over into other areas of his memory. And it does, a bit. While it’s true that he can spell any word he’s ever read, and has an uncanny ability to remember dates and places of historical events, his memory for his own daily life generally isn’t as dependable.

On a recent trip to the grocery store, I was curious if Nigel remembered how traumatic it was for him to be in them when he was younger, how his sensory issues were so extreme that all the noises of the grocery store were agonizing to him and he would scream and writhe on the floor. He did not remember a thing. It was as if his mind had mercifully blocked the painful memories. I thought perhaps he didn’t remember because the majority of those incidents occurred when he was mostly non-verbal, aside from his cries of “Go! Go!” mixed in with his screams.

Part of me was disappointed because I thought that his memories would be valuable for several reasons. For one, I think it would buoy his self-esteem to see how far he’s come. Also, it would be fascinating if he could shed some light on what made things so hard for him, how he felt, and what he was thinking. Of course, the answers to those questions are obvious (The sounds hurt his ears! He felt tortured! What was he thinking? That he needed to get out of there!), but I just know that there’s so much to be learned from him, from his experiences. And so I figured that if he couldn’t remember the difficult parts of his non-verbal days, he couldn’t remember the good parts either.

Enter Tigger. Tigger is pretty celebrated around here. I’ve mentioned before how Nigel’s stuffed Tigger (bought at Disneyland during my pregnancy) prompted him to write the first little note he’d ever written. The Tigger and Winnie the Pooh stories and videos have also taught Nigel about friendship. And Tigger is responsible for enabling Nigel to do the first imaginative thing he’d ever done. Nigel used to like eating frozen corn niblets. He wouldn’t eat them cooked, only frozen. I would pour them in a little bowl and he would eat them with his fingers. One night when he was four years old, I poured some in bowl and put it on the kitchen table for him to eat. While I prepared some toast for Aidan, Nigel got out of his chair and ran out of the kitchen. He came back a moment later with Tigger. He gently put Tigger’s face in the bowl of frozen corn niblets and said, “Eat” in his little voice, his voice that was actually forming a word, stoic even from the beginning. I was beside myself with joy.

Fast forward ten years. Nigel, now fourteen, still loves Tigger and sleeps with him on his bed. He came to me a couple of nights ago and told me that he wanted to feed Tigger some corn again, like he did when he was little. My spine tingled. “You remember that?” I asked incredulously. He confirmed that he did. He said that he remembered how he felt and what he thought back then, that it made him happy to feed Tigger, and that he believed that he was really eating the corn. He said that having Tigger around all these years helps him to remember something from so long ago.

“Maybe Tigger has a magical quality because he was a gift of love,” Nigel said. I told him that he was probably right. And then he said, “Love reveals its capabilities in unexpected ways.”

I had to turn away, not wanting him to see my eyes welling with tears. “Yes, Nigel, it certainly does.” And I realized that what he said might have been a line memorized from a movie. But so what if it was? He chose the perfect time to say it. And it was beautiful.

April Announcements Vol. 2

Here’s an interesting program that I’ve been asked to post about for Autism Awareness Month:

“Ask.com is now featuring a new homepage theme every week in April for Autism Awareness Month, designed to educate consumers about autism, a complex neurobiological disorder affecting one in 150 people in the U.S. Ask.com donates $.50 to Autism Speaks for every new consumer who selects the Autism Speaks Skins as the design for their personalized Ask.com homepage. The Skins display a series of questions that challenge consumers’ understanding of autism; for each correctly answered question, Ask will donate another $.01 to Autism Speaks.

“Consumers don’t have to spend a dime to support this important cause. Simply choose one of the Ask.com skins designed especially for this initiative, and we’ll make a donation – it’s that easy,” said Jim Safka, Chief Executive Officer of Ask.com.

The Autism Speaks Skins feature photos of children with autism as well as original art by Andrew Bianchi, a 10 year-old boy with autism from New York. Every new homepage skin generates four questions and several answer options. Consumers can use Ask.com at any time to find the answer to a question; simply answering a question correctly is counted towards the total donation amount. Ask.com is promoting this special program directly on the Ask.com homepage several days throughout the month of April, as well as in the Ask.com Skins Gallery at www.ask.com/skins.

“True to their reputation for innovation, Ask.com has created a unique program where everyone wins: we gain awareness and support for our cause, consumers gain knowledge about autism through an engaging and thoughtful user experience, and Ask.com has an opportunity to connect in a meaningful way with consumers who also care about this cause,” said Scott Leibowitz, national director of corporate relation for Autism Speaks.

Stepping Back

Little transitions – stopping an activity to come to dinner, getting into and out of the shower, a new piece of furniture – can be challenging enough to get through. And they make the big transitions – starting a new school, moving, divorce – seem incredibly daunting. And we have a really big one coming up.

Brace yourselves.

In September, Nigel starts high school. Wait – did I just write that? A mere five days ago, as I held my newborn nephew in my arms, I remembered seeing my son for the first time. Holding him, gazing at his sweet little face. How is it possible that the sweet little face now has peach fuzz on it and towers over me?  How is it possible that the five-year-old who could not say his name when asked is now pre-registering for a full day of unassisted classes at the high school?

I am, of course, filled with apprehension. But part of me is also hopeful. Two nights ago Nigel and I attended the “8th Grade Pre-Registration Night” at the high school. We ran into a good friend of his, and our families sat together. The principal gave a PowerPoint presentation and spoke about all the positive attributes of the school, including a student support system called an Advisory. It is comprised of twenty students, five from each grade level, and all students in the school are part of one. They meet weekly to discuss both academic and social issues. While this sounded very positive to me, Nigel was more excited about the opportunity to start his own club.

After the principal’s presentation, the audience split up into smaller groups to take teacher-led tours of the school. We had barely gotten started on the tour when Nigel flagged down our tour leader, the vice principal, and mentioned that he wanted to start a club for stop-motion Lego films. Only he asked it in his halting, “I-have-something-to-ask-but-my-autism-makes-me-pause-and-say-hmm-a-lot-when-I’m-nervous-or-not-sure-what-to-say” voice. The vice principal, who had just returned from coaching a softball game, got a blank look on his face for a few seconds, trying to piece together what Nigel had tried to say. I almost stepped in with a quiet “My son has autism” explanation. I’ve done that in the past whenever someone new to us has a hard time understanding Nigel. But something made me hold back this time. In the past year, I’ve tried to hold back whenever I feel that Nigel’s doing okay interacting on his own with someone who doesn’t know him. It may not be perfect, but he manages. I have to realize that I’m not always going to be there, especially at high school, to step in and wave the autism flag. There’s something liberating in the “not telling.” Because, really, a person’s response should not be influenced by knowing if someone’s autistic. Ideally, a person should respond with patience and respect regardless. They should realize that the person addressing them seems to have some difficulty expressing themselves – the reason why shouldn’t matter. And sometimes, after the quick blank look, the other person gets it. They may not know exactly what “it” is, but they know that they’re in the presence of someone who communicates differently, and that’s okay. I took a deep breath and waited for the vice principal’s response.

He got it. He gently rephrased what Nigel had said in a questioning tone to see if he was correct. Nigel confirmed with an appropriate “yeah,” and the vice principal said, “You certainly can start your own club. There’s a sheet in the pre-registration packet that tells you how to do it. That was a great question!” Then he turned and resumed leading the tour.

I exhaled and put my arm around my son as we followed the group. I wanted to high-five the vice principal and tell him that he had just made an autistic teen feel very good about himself. And that he had just made the autistic teen’s parent feel a little better about such a big transition.

There’s Something About a New Baby

There’s something about a new baby. Something that makes you believe that all will be well. Something that makes you cry and laugh and think about all the life there is to share with this new soul.

Last week, my sister had her baby, and I am an aunt for the first time. As I held my new nephew, Nolan Tate, studied his face, stared into his deep blue eyes, and kissed his tiny feet, my breath caught in my throat. This new, perfect little life filled me with such emotion. Visions of future family events entered my mind – annual beach trips, Christmas dinners with everyone around the table, summer rafting and barbecues, camping trips, birthdays. A new member to add to the mix. So much to enjoy!

We all took turns holding him, even Nigel, who was reluctant at first. “I’m not sure about this,” he said as I coaxed him onto the couch and put a pillow under his arm. He said he was excited but nervous. I asked him what he was nervous about, thinking he might be afraid of dropping the baby.

“Waking him up,” Nigel answered. Spoken like someone who values sleep! (Or, more likely, fears the sound of crying babies.)

I put his baby cousin in his arms and snapped some photos. Then I asked, smiling, “So what do you think of him?”

Nigel said quietly, “I think he’ll do fine.”

Yes, indeed. Welcome, Nolan. Welcome to our family. And welcome to the world.

100_1727 Aunt Tanya!

100_1730 Cousin Aidan!

100_1720 Sleeping with Nigel.

Can you see the teeny toes?

100_1733 Mama Macrina and her little man!