Teen Autism

So I took a big chance at the high school dance . . . - Aerosmith

I remember what I wore to my first high school dance as a freshman: a pleated linen skirt, a black shaker-knit sweater (remember those?), and black high heels. I loved that outfit. I loved being at school at night, how different everything looked, how different I felt. A little nervous, but excited.

For the past two weeks, Nigel has talked of his desire to attend his school’s winter formal. I’d pick him up from school, and he’d tell me about what they discussed in his social skills class, specifically how to ask a girl to a dance. I remembered the formal dances at my high school and voiced the concern to Nigel that freshmen might not be allowed to attend. I mentioned that we might need to get him a tie. I posed the idea that they might be required to have dates at formal dances. Nigel decided to find out.

Apparently, times have changed. Freshmen can attend, they don’t need to wear a tie, and they’re not required to have a date. So why, then, is it called a formal? Regardless, Nigel was determined to go, and my nerves kicked into overdrive. What if the girls were insincere? What if they asked him to dance only to laugh at him? What if the guys tried to get him to do something that could get him in trouble? What if they talked him into going out to the parking lot or leaving? What if the music was too loud for him, or he got into a situation that he couldn’t handle? The worry was driving me insane, but I had to let him do this.

The night of the dance, Nigel watched movies in his room until it was time to get ready. Then he took a shower, brushed his teeth, and put on a ticking-striped button-up shirt, khakis, and a pair of old-school blue Vans with laces. “Because they’re stylish,” he told me. He came out to the living room and said that he was a little nervous, so he had watched some Winnie-the-Pooh movies to help calm himself. My heart felt like it was caught between my ribs - Winnie-the-Pooh at age 15. My sweet, innocent boy. And he’s flying solo - no aide - at a high school dance. Last year, he attended a middle school dance/event successfully without an aide, but there were other activities, such as an obstacle course and video games, that he could participate in. This would be a whole different ballgame.

I motioned for him to sit next to me on the couch, and he did. I told him that if the music was too loud for him, or if he felt uncomfortable for any reason, he could call me on his cell phone to come pick him up. It didn’t matter if he had only been there ten minutes. I told him that if anyone was being insincere while dancing with him, he could just say, “No thanks” and walk away. I told him that if anyone tried to get him to do anything or leave the dance that he could just say, “No thanks, I’ll just hang out here.” At this stage of his development, our social stories are usually verbal. I rarely have to write it down for him. As liberating for me as this is, it still does not alleviate my worry. I know how vulnerable he is. 

He said that he understood everything I had told him and said that he thought he’d be okay. A larger part of me actually agreed. Then he said, “But I think it’s too dark to ride my bike.”

“Oh, honey! Of course I’m going to drive you!” Poor boy thought he would have to ride his bike to the dance!

I dropped him off, came home, and watched a movie with Aidan, thankful for the opportunity to have some one-on-one time with him. Nigel didn’t call, and I hoped all was well. I told him that I would pick him up ten minutes early to avoid the congestion, and when the time came, he was right there waiting, by himself, doing some sort of spinning dance. He got in the car, and before he had even closed the door, he announced, “Well, I danced with a lot of girls!”

He assured me that they were nice, they were sincere, and that he felt comfortable and had fun. I told him how glad I was to hear that. On the surface, I felt what I always feel after he does something successfully on his own - relief and gratitude. But there’s something else there, in my heart, some emotion that I cannot identify, even though I feel it every day of my life, and it makes me want to cry when I’m happy. Maybe it’s just love. The love of a special-needs parent.

“This will be a fun high school memory for me,” Nigel said as we got home and walked in the front door. I hugged him and felt that love surge through me again, immense and consuming.

You have to take the jump faster than you feel comfortable with.                                       - my younger sister, Macrina

Four years ago, two days after my 35^th birthday, my sister and brother-in-law took me snowboarding as their gift to me. At the time, I had snowboarded off and on for fifteen seasons, and they had skied for at least that long, if not longer. We all felt comfortable at our intermediate-to-advanced skill levels. As I recall, my sister had started doing some small jumps the previous season, and she wanted to practice a bit that day. I thought, Wow, I’ve been snowboarding a long time and I’ve never tried jumping. “I think I’ll try, too,” I said. I followed my younger sister down a few side runs and did some practice ollies, catching a little air off some bumps and landing solidly. It felt so exhilarating! There didn’t seem to be anything to it.  

Then we decided to try the real jump in the terrain park. We stood about a hundred feet behind the ramp, watching the person before us approach, jump, and land. It looked easy enough. It looked fun. I was game. My brother-in-law went next, executing a smooth take-off and solid landing. Macrina readied herself, and then she gave me her little tip about needing to go faster than I felt comfortable with. She took the jump the same as her husband, and then waited off to the side with him.

I can do this, I thought. I jumped out of an airplane and landed that jump just fine, so I can do this one. 

I readied myself and took off, keeping my eye on the ramp. I was certainly going faster than I felt comfortable with. In fact, as I quickly approached the base of the ramp, I realized that I was going faster than anyone would feel comfortable with. I suddenly knew that there was no way I could land this jump. That if I tried to land it, I would probably end up breaking both of my wrists, and do some severe ankle and knee damage while I was at it. In that instant, I remembered that people in accidents usually fare better if they relax their bodies rather than tensing up. I knew that my entire body would be ultra tense if I tried to land the jump. So, I made a split-second decision to pass out. As I hit the ramp and literally launched myself into the air, I willed myself to lose consciousness - right at that second. And that’s all I remember of the jump.

My sister and brother in law later told me that I even looked unconscious as I flew horizontally with my board in front of me, about ten feet up and forty feet across. I landed on my right shoulder, but I didn’t feel it. Thank God I was wearing my helmet, because I’m sure my head hit the ground just as hard. The first thing I remember as I was coming to was my brother-in-law leaning over me saying, “Did you get the wind knocked out of you?” I opened my eyes then, not remembering the jump and wondering what I was doing lying on my back in the snow. Moments later, as the Ski Patrol arrived, it started coming back to me. They asked me my name and my age, and I said 34. Then, either Macrina corrected me or I corrected myself, and we laughed that I had forgotten my age.

I ended up being snowmobiled out on a stretcher, as the Ski Patrol, who called a week later to check on me, were certain that I had broken my collar bone. I could not move my right arm at all. My sister and brother in law loaded me into the car and drove to the hospital for x-rays. My shoulder and chest were purple, and they would turn blue, green, and yellow as the weeks went on. I would later learn that my shoulder was separated in two places, but I did not break my collar bone. I was bruised and sprained in several areas and would need three months of physical therapy, but I did not break a single bone in my body.

For the first two weeks I was in constant pain and on Vicodin, but not enough to really dull the pain because I still had to drive and work, take care of kids, and pilot this life of mine. That’s what I feel like sometimes. Like I own an airline and not only am I the pilot but also the flight attendant, mechanic, customer service, ground crew, and the engineer. With my right arm in a sling, Nigel learned to scrape ice off the windshield in the mornings, Aidan learned how to work the microwave, and I learned to do a lot with my left arm. We managed. The bruising on my right shoulder and other areas of my body was like nothing I’ve ever seen before. Because I was going so fast, I think that it must have been a bit like being thrown from a vehicle, except I had a helmet on. So even though I did something stupid, something I had no business doing, at least I was wearing my helmet. I cried the first night, alone in my bed, in pain, angry at myself, not wanting to think about how bad it would have been if, instead of my shoulder, I had landed six inches to my left, on my neck. The helmet would not have helped.

So, after three months of physical therapy and three years of not being able to sleep on my right side, my shoulder has healed. I even went snowboarding again the next season! But I avoided the jumps, happy to just cruise around and carve my way down. Fortunately, my birthdays since have been much less eventful. And forgetting my age? That probably wasn’t the last time. In fact, I’m sure there will be plenty more opportunities for that in the future. But today, I’m definitely 39. 39 and feelin’ fine.

The Scene:  Interior of a suburban family home. The autistic teen has been spending most of a Saturday afternoon in his bedroom, at his computer, playing a CD-Rom game in which the player constructs and runs a Jurassic Park-themed attraction. He has owned this game for about eight years and goes through phases in which he plays it for days on end, and then moves on to some other Obsession of the Week. But he never lets more than a few weeks go by without playing this game again. It is his favorite “video” game. He studies the screen now, makes some changes to the sauropods’ feeding schedule, and gets up out of his chair. He walks down the hall and enters a room on the right - his mother’s office. She sits at her desk staring at her computer screen; spreadsheets surround her. He stands at the open door, and she looks over at him with an expression of confused amusement as he makes his announcement.

Autistic teen:  My deepest desire is to build a Jurassic Park and have a girlfriend.

Mother: Okay. We’ll see what we can do.

It’s time once again for another edition of Personal Posts! Some might recall that I started this series of posts back in November and, well, I started it. I haven’t written any additional posts on it since, and I figured it was time. Because, you know, I have such an exciting life and all.

When we last left off, I was not dating, and that is still the case. My co-workers and I recently had a good laugh over some headline we read that Kate Gosselin, with her new long ‘do, wants to start dating again, and I was like, “I don’t have time to date with two kids; how is she going to date with eight?!” But I’m thinking that summer might be a good time for me to try. That gives me ample time to finish up some projects and grow my hair back out. I had my hair cut a couple of weeks ago, and even though I went to the same stylist who’s been doing my hair for about five years, and even though I brought a photo of myself with the cut that she did last time that I loved, she wasn’t able to replicate it. It turned out completely different, and way shorter than what I asked for. And since, unlike Kate, I’m not into hair extensions, I’ll just have to wait a few months for it to grow out.

Next up is something I’m truly excited about - my plans to gradually switch to what’s called a raw vegan diet, or simply, raw foods. Back in September, I realized that I never felt that great. I felt like every morning I had to drag myself out of bed and had so little mental and emotional energy. I wasn’t sick, but I didn’t feel completely well. I had found out about the raw food diet through one of my clients at work, Raw Family Publishing, a year and a half ago, but at the time it wasn’t something I felt compelled to pursue. In September, I felt drawn to research raw foods due to my low energy level, and I read 12 Steps to Raw Foods. An entire chapter was dedicated to the subject of increased energy as a result of eating raw foods, along with many other positive effects. This is it! I thought. This is what I need to do!

But I knew that such a huge lifestyle change would need to be gradual for me. There are people who go 100% raw all at once, but I knew that wouldn’t work for me since I have two teenagers for whom I still need to cook. So I decided to start off with my breakfast and make that completely raw by drinking green smoothies every morning. I bought a Vita-Mix high speed blender (an investment, but worth it), and since the first week of November, I’ve had them every day. I’m convinced that when I was sick last month it would have been much worse if I’d not had my daily green smoothies. I’m addicted to them and cannot start my day without them! Since I asked Nigel and Aidan to be supportive, they humor me and refrain from making comments (especially the one who thought it would be a good idea to make a pizza smoothie). So I’ve got the raw breakfast down pat, and I’m slowly working my way toward a raw lunch, which I hope to accomplish in the next couple of weeks. Eventually, when I’m 100% raw, I’m excited to see if the amazing results I’ve read about will happen for me, like increased energy and time, two rare commodities around here.

The progress on publishing my book came to a grinding halt when the holidays hit, and if I don’t get back to it soon I won’t be able to live with myself. Unfortunately, this time of year is my busiest with my second job, which is seasonal. For my primary job, I am an account manager for a fulfillment company. One of my accounts is a music label with about 50 artists, and for my second job, I do their semesterly royalty calculations and statements. I’m about neck-deep in spreadsheets now. So, my friends, I’m afraid I’m going to have to cut back on posting and blogging (wah!) for a bit until I meet my deadline (meh).

If I can, I’ll pop in every now and then with a Nigelism or something, like yesterday when he got home from school and decided to take inventory of all the clocks in the house - his watch, everybody’s alarm clocks, the living room clock, the microwave clock, and whichever ones I’m forgetting. He then came into my office and announced, “Looks like all our clocks are out of order. But mine is the right time.”

Ba-da-bum. Cheers!

I’m waxing poetic at Hopeful Parents today. I’d be honored if you’d join me.

When Nigel started wrestling two months ago at his high school, I was elated and optimistic. This, as I wrote previously, was something that he’d wanted for a very long time, and he made it happen. Surely that meant that this was the beginning of great things in his life, that this would be his niche, that by junior or senior year I’d be attending state championships and even nationals with him, filming him as he won matches, cheering, crying with joy that he achieved success on his own terms.  I could see it happening. I could almost feel it. I wanted it for my son. But I knew that his first season would be a time of learning, since he hadn’t wrestled before, and I had talked with him about not feeling bad if he lost a lot of matches his first season. I told him that I had heard from other parents that their sons lost a lot of matches their first season, but they just kept practicing, and by their second season, they were winning matches.

The season is now two-thirds of the way over, and he has not lost any matches. But that’s because he hasn’t been in any matches. He hasn’t been in any tournaments. The only time he gets to actually wrestle is during practice. At least, that’s what I thought.

I picked him up from practice last week, as I usually do. He got in the car, I asked him how his day had been, and he said, “Fine,” as he usually does. I pulled out of the parking lot and began driving home. And then he said something that made me want to sob.

“I think there must be an odd number of people on the team, because whenever it’s time to pair up for practice, I always end up without a partner.”

He had said it with trust and diplomacy, without blame, and without self-pity. But I could hear his underlying disappointment. I could hear the frustration he’d learned to suppress from years - a lifetime - of being left out. Of not being understood. Not being accepted.

A few weeks ago, it was proposed by his case manager and the coach that we reduce his time at daily practice because he was complaining of being too tired to do his school work, and I had agreed. But I didn’t know that he was being excluded during practice, and I wondered how long it had been going on. I took a deep breath.

“Have you talked to the coach about it?” I asked. As much as I want to jump in and be mama bear, I am trying to hold back and give him the support to advocate for himself.

“Yes. But I don’t remember what he said.”

“Well, maybe you could talk to him about it again, and suggest to him that if there is an odd-numbered amount of people, that perhaps a few could rotate. Since you leave early, you could work with someone first, and then when you leave, the other person would get their turn.”

“Hey, that’s a good idea,” he said with interest. “I think that would work.”

 *

Five days later, I ask Nigel if he’d talked to the coach again, and if he’d been getting a partner at practice.

“Yes, for a little while,” he says. “But I’m starting to think that this being thrown around all the time is too hard on my body. Wrestling’s not how I thought it would be.”

This is new information, and part of me suspects that he’s trying to talk himself out of wrestling because he hasn’t been in any matches or tournaments. I remind him that the first season is a learning season for everyone, and ask him if he would like me to talk to the coach about making sure that he gets to do at least one match before the season is over. He declines my offer. I remind him that he’d been wanting to do this since he was a little kid.

“Yeah,” he says. “And I did it. I wanted to be on the high school wrestling team, and I am. That’s all I really wanted to do, besides inventing a time machine and being the first human on Mars.”

And it hits me - he just wanted to be on the team. That was his dream. Not finding his niche, or going to state championships or nationals - those were my dreams. And as long as he’s happy that he followed his dream, that’s all I really care about. I put my arm around him and tell him how proud I am of him. I ask him if he’d like to continue practicing the remaining four weeks of the season.

“No. I just don’t think wrestling’s my sport. It’s too painful. But I’m glad I tried it, despite the fact that it wasn’t what I thought it would be.”

I tell him that I’m glad that he tried it too, and then we go over what he should say when he calls the coach to tell him that he’s not going to do wrestling anymore. I remind Nigel that he should tell the coach thank you for the opportunity to be on the team, and that it meant a lot to him.

It meant a lot to me, too.

Remember Silly Putty? You could pull it apart slowly, and it would keep stretching and stretching and stretching. But if you tried to pull it apart really fast, it wouldn’t stretch. It would snap.

Sometimes I feel a lot like Silly Putty, trying to stretch to accommodate all of the elements of my life. But I think that the hardest part for me, besides my sons’ father living far away, is being pulled in two directions trying to meet the needs of both of my boys. I feel like I’m just stretching and stretching. Most of the time, I can keep stretching, and I do. But sometimes, too many things that require my attention happen at once, and I reach a breaking point.

Take last weekend, for example. Nearly all day Saturday was spent doing Nigel’s Boy Scout event with recycling Christmas trees. We got home from that, I made dinner, cleaned up after dinner, and started doing some work that was due for a client. I figured I could finish it by Sunday afternoon before heading out to the animal shelter to do the weekly volunteer work that Nigel needs for a Scout requirement. Then we’d get home, I’d make dinner, fill out some paperwork that needed to be done, and that would be the end of the weekend. No down time. I felt really stretched.  

So I was sitting at my computer, working on some spreadsheets, and Aidan walked in to ask me to take him to the mall tomorrow so that he could trade in some old video games and get a new one. I sighed, trying to avoid snapping. I felt like I was being pulled apart too fast. I started to complain about how busy I was, being gone all day at the Scout thing and having work to do, and the animal shelter tomorrow, and more work, and . . . Aidan’s face fell. He started to walk away.

And then it hit me. Again. I do so much for Nigel. He requires so much of my focus and time. And Aidan asks for so little. How could I not do this for him? All I needed to do was stretch a little more, to make a little time for my second son, who so often feels like second fiddle.

“Wait, honey,” I said. “I’ll be able to fit it in. We’ll go right after Nigel and I get back from the animal shelter. And after the mall, we’ll go out to dinner, okay?”

“Okay. Thanks, Mom,” he said, his face brightening some.

And that is what we did. Sunday afternoon, Nigel and I got back from the animal shelter, and Aidan had his bag of old games all ready to go. I changed my clothes for dinner, then we drove to the mall and exchanged Aidan’s games for the new game that he wanted, and he was happy. We went to the restaurant, and Nigel, without prompting, actually thanked the waiter when his plate was set in front of him. That’s twice in one weekend, for anyone keeping track!

And I’m so glad that I stretched myself a little more. It’s often a huge challenge doing this on my own, but it’s worth it to keep stretching. It’s worth it to make sure Aidan knows that he’s also my priority. Fortunately, I’m a lot like Silly Putty. When it snaps, you can easily connect the two ends together again.

Dear Nigel’s Teacher,  

At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Nigel worded something in an awkward way, and that you didn’t mean any harm, but I wanted to clarify for you what I said in response, because, as his teacher, it’s important for you to know. Nigel did not start talking until he was five years old, and the process from that point on was very difficult for him. I described this in the information sheets that I gave to all of his teachers at the IEP meeting in September in the hopes that his teachers would be patient and understanding when he has difficulty expressing himself verbally. This is one of the many ways that his autism affects him.  

When I said, “He does the best he can,” in response to your laughter, I meant that sometimes he is unable to formulate his word choice in a typical way, but he tries. He has always had difficulty using pronouns correctly. Sometimes he states something that’s obvious. Sometimes what he says can sound odd or off-the-wall to others, but he cannot help it, just as [another student] cannot help it when he stutters. When [the other student] stuttered at the meeting, no one laughed. And I really hope that when Nigel says something in the classroom that is obvious or might not make sense that you do not laugh in response. This sets a negative example for his peers, many of whom have bullied him in the past. This is why I had homeschooled him previously. It would be very upsetting if the bullying started again, as it would affect Nigel’s academics negatively along with his well-being.  

As I said, I know you did not mean any harm by laughing. I just wanted to make sure you realize that he cannot help it if he says something awkward. He has always tried so hard to communicate, and when he says something that doesn’t sound right, he shouldn’t be laughed at. Thank you for the work that you do as a teacher, and for your patience with my son. I know that a student with autism can be more difficult to teach, and I do appreciate all of your efforts.  

Sincerely,  

Tanya Savko

umbrellas for guests’ use in the lobby of the Hotel Country Villa, Nagarkot, Nepal, during monsoon season 

Sometimes the little things* mean so much.

Yesterday, we participated in a day-long Scouting event that Nigel’s troop organizes annually - Christmas tree recycling. The Scouts and their parents drive all over our town and the neighboring town, pick up Christmas trees from people’s homes, load them onto trucks and trailers, and take them to a local park where later they are turned into fish habitat and mulch. It’s a great program for the community, and the donations received from it help to fund the Scout Troop’s activities for the year.

Halfway through the day, we break for lunch, which is prepared and served by Scout parents and siblings at the local church where we have our weekly meetings. During lunch, one of the Scout’s sisters walked around the tables refilling drinks for people. Nigel was seated at a table near me, and as she passed by, he held up his cup for her to refill. She did, and he said, “Thank you.” He said it perfectly, so naturally, like he’s been saying it all along. And he said it completely unprompted.

My heart raced, and I wanted to stand up and shout, “Did you hear what he just said?! On his own?!” For years, after he finally started talking, I have always had to prompt him to thank someone, whether it’s for a gift, a server bringing him something in a restaurant, me buying something that he wanted, or for anyone helping him in some way. I have repeatedly told him that whenever someone does something for him, even if it’s just holding a door open for him, he should say thank you. And, until yesterday, I had never heard him say it unprompted. The way autism affects him socially, it just doesn’t occur to him to thank people. I think that now, at this age, he understands why he should and that it’s expected, but he usually just doesn’t think of it at the time. He may be battling sensory issues in whatever environment he’s in, or preoccupied in some way that we don’t understand. It’s not because he’s rude and doesn’t have manners. And I know that he does the best that he can, and his family and friends know it too. We don’t hold it against him when he doesn’t thank us.

But the general public doesn’t know or understand, and that is why I have continued to drill into him to say thank you. And that’s also why I write and advocate about autism - so that the general public might start to know and understand, and he can meet them halfway. He won’t always say thank you when he should. He can’t always say thank you. But he tries. And when he does, it’s beautiful to hear. It’s a little thing, but it means so much.

*For more not-so-little things, check out Jess Wilson’s Community Brag Page! It’s a great space for any parent of a child (any age) with ASD, whether you are a blogger or not, to contribute to an ongoing celebration of our kids’ amazing progress. Cheers!

The Scene: Interior hallway of suburban family home. The autistic teen is in the bathroom directly off the hallway. The sound of a shower running can be heard from behind the closed door of the bathroom. The autistic teen enters the shower and begins speaking loudly. He is scripting. He begins one of his favorite and most-quoted scenes from The Princess Bride - “Battle of Wits.” His mother, across the hallway in her office, smiles as she listens to him. Last week in the shower, he scripted Peter Sellers and Herbert Lom in an original Pink Panther scene. The week before that, he sang a song from Toy Story. The mother recognizes, since she has heard it so often, that the current scene is nearing its end as her son’s voice rises. She laughs as she hears him deliver the final intonation.

Autistic teen: Never go in against a Sicilian when DEATH is on the line!