A Little Boy’s Dream, Part 2

When Neil 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 Neil 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 Neil 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.

Stretching

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 Neil’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 Neil 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 Adam 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 . . . Adam’s face fell. He started to walk away.

And then it hit me. Again. I do so much for Neil. He requires so much of my focus and time. And Adam 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 Neil 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, Neil and I got back from the animal shelter, and Adam had his bag of old games all ready to go. I changed my clothes for dinner, then we drove to the mall and exchanged Adam’s games for the new game that he wanted, and he was happy. We went to the restaurant, and Neil, 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 Adam 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.

An Open Letter to My Son’s Teacher

Dear Neil’s Teacher,

At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Neil 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. Neil 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 Neil 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 Neil’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

The Little Things

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 Neil’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. Neil 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 my friend Jess‘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 Shower Scripter

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!

 

Every Morning

Saying goodbye doesn’t mean anything. It’s the time we spent together that matters, not how we left it.          -Trey Parker and Matt Stone, South Park, Tweek Vs. Craig, 1999

I have pulled up in front of the high school and am dropping Neil off in the morning as I have done since he started wrestling two months ago.

“Bye, honey – I love you; hope you have a good day!”

He picks up his backpack and bag of wrestling gear, opens the door and climbs out, shuts the door, and walks into the school without a word, without a glance. This happens every day. And this morning it struck me that even though my son has changed so much in the past ten years, this one thing is still the same. When it’s time to go to school, he doesn’t say goodbye.

When he was five (and for two years before and after), every morning I would walk outside with him when the SPED bus pulled up to the house. I would follow him up the steps of the little bus, greet the driver, and buckle Neil in his seat. I would kiss his head, tell him I’d see him when he got home, bid the bus driver a good day, and step off the bus. Then I would stand in the front yard, smile, and wave goodbye to my son as the bus pulled away. And every day, Neil would stare straight ahead. He would not smile; he would not wave. This went on for five years.

As time passed, he learned to say goodbye in certain situations. For the past two years, I have been able to leave him home alone for short periods of time, and he will respond, “Bye, Mom” when I say goodbye to him. When someone has been visiting our home, he will say “Bye” upon their departure, with prompting. It is never initiated.

As a parent, I’ve learned to just accept it. I’m sure that they continue to work on it in his social skills class. But the fact is that his hard-won ability to talk does not guarantee the ability or the desire to say what society expects. This is one of the many facets of autism. In his mind, perhaps, it is unnecessary to say a parting word upon leaving someone’s presence, especially when it happens the same way every single morning. Or, perhaps, as he gathers his things, steps out of the car, and readies himself to enter a loud, bustling building and function in an unpredictable environment, he doesn’t have the reserves to say anything, to acknowledge me, to be polite. He is too focused on preparing to begin his day at a place that he would rather not be. Even when he is not being bullied, his sensory filters are in overdrive, and his stress level is high. He has to regulate his behavior with both peers and teachers for almost nine hours. And that ain’t easy. I don’t have the heart to tell him yet again that it would be “polite” to say goodbye to the person who drops him off.

And so, tomorrow morning, I will pull up to the front curb of the high school and tell my son that I’ll see him when I pick him up after wrestling practice. I’ll say goodbye and tell him that I love him. And he will pick up his things, get out of the car, shut the door, and continue on into the school without responding. And I will drive off to work and be thankful that, at this point, he does as well as he does. As much as I would love to hear him say goodbye, I don’t need to. I’ll just look forward to the smile he gives me when I pick him up from wrestling practice. That’s worth a million forced goodbyes.

Flying Solo, Part 2

Please wait, an agent will be with you shortly.

Your chat session has started . . .

Micki: Thank you for contacting Economy Air. My name is Micki. How may I assist you today?

Tanya: I have downloaded the unaccompanied minor form for my two children, ages 13 and 15. My question is if the meeting party needs to sign where it says “signature of Party Accepting Custody” when they actually pick up the children, or does it need to be signed by the meeting party beforehand? Thanks.

Micki: 13 and 15 year olds traveling together are not considered unaccompanied minors. The 15 year old is considered an adult.

Tanya: My 15-year-old has autism, and their father still needs to go directly to the gate to pick them up.

Micki: [no response]

Tanya: He’ll be fine on the plane, but we don’t want him going through the airport unaccompanied.

Micki: That is fine. We will document the itinerary so that it’s understood by the agents. All the father needs to do is show his identification at the ticket counter and they will issue him a gate pass to meet the flight.

Those who happened to catch my post a few days ago know what transpired with the December 25th travel plans, and why the flight had to be scheduled that day. But since we had no way of knowing that it would be canceled, the boys were prepped for their first solo flight (!). We practiced lifting up their luggage to put it in the overhead bins. We talked about being patient while waiting to de-plane and not making comments about how people should “just move.” We talked about what to do if for some reason their father wasn’t at the gate when they landed. We went over what topics are not okay to talk about with airport security. Special needs were noted with the airline agent in an online chat that could be printed out for verification. Not surprisingly, there were many preparations for this huge milestone.

And although they ended up not flying that day, we still planned to have them return to Oregon by plane.  I got up that morning and prayed for a fogless arrival time, so that the boys’ plane could land safely. Their father called to let me know as soon as they boarded in L.A. He sounded so proud, describing how he watched the boys get on the plane, and how they waited patiently for an elderly woman in front of them.

When the time came, I drove to our little airport to pick them up. The sky looked good, but as I neared the terminal, my body started gasping involuntarily. It wasn’t a panic attack, which I’ve had in the past. No, it was just a mom, overcome with emotion. I couldn’t help it. Neil was doing something I never thought he’d be able to do! He has come so far, and he never ceases to amaze me.

I parked the car and pulled myself together. I went to the counter to request a gate pass. They hemmed and hawed a bit at first (I wanted to say, So what if they’re teenagers? They are my children, autistic or not, and I have every right to meet them at the gate!), but all I had to do was drop the A-word, and then they were accommodating. The flight was only a few minutes late, and I waited anxiously at the gate.

I was afraid that I would start crying again with their arrival, but as soon as I saw them, my face broke into a huge grin! Adam ran past me, looking unwell. “Mom, I’m sick. I’m going to the bathroom,” he said as he handed me his luggage and took off. “What’s wrong?” I called after him, but he hurried away. I hugged Neil and asked him what was wrong with Adam. He said he didn’t know, and we walked over to the side to wait for him. Neil said that the flight was fine, and then he proceeded to tell me about how, at the movie theater the night before, he threw up twice during the 3-D showing of Avatar. “That 3-D was too good, I guess!” he said with a chuckle. “I’m sorry that happened, honey,” I said. He told me that all the 3-D aerial scenes made him dizzy and sick. I hadn’t even thought of that as a movie-related sensory issue. If it’s not one thing, it’s another!

Adam returned then, explaining that he’d felt a little airsick when they started descending, and then the stuffiness of the cabin and having so many people around him while waiting to de-plane just got to him. “At least I didn’t throw up in the plane,” he said. Yes, at least. Oh, my poor SPD boys! I felt so bad that they had both been sick, especially when I’d hoped that they would enjoy the movie, and later, take pride in their autonomy on the flight. But my concern took a back seat to my overall relief and exhilaration. They did it! Their first solo flight! After many years of effort in dealing with their challenges, it’s so validating to just let them fly.

Image credit: Marcelo da Mota Silva

An Open Letter to 2010

Dear 2010,

Greetings to the first year of a new decade! You must be excited! Or are you feeling pressured?  If so, don’t worry. All things considered, we are more flexible and have fewer expectations than we did last year.

That doesn’t mean we don’t have plans for you. On the contrary, we’ve got some big plans! But what’s different from last year is that we’re not limiting ourselves to our own expectations. You see, I learned something this past year. In my letter to 2009, I wrote that, among other things, we were expecting a “problem-free trip to the Grand Canyon.” We did make that trip, and aside from an attack of acrophobia and a massive bloody nose inside the Canyon, it was “problem-free.” But what I couldn’t have foreseen when I wrote the letter was that I would have the opportunity to embark on another trip last summer. I would journey to Nepal for two weeks to work with families with autism, and it would be one of the most fulfilling experiences of my life. There was no way I could have expected that wonderful trip to happen! In addition to that, there were countless other experiences throughout the year that have enhanced our lives and helped us to learn what we needed to know, whether we expected them or not.

And so, 2010, I’m leaving my expectations open this year. I’ve learned that things can turn out way better than I could have ever planned or expected.  Yes, we’ll still make plans and set goals and do our best to achieve them. And if things don’t work out the way we plan, that’s okay. We know that you’ve got something lined up that will work out even better. So, Welcome, 2010! We’re really looking forward to seeing what you have in store for us.

Best wishes,

The Teen Autism Household

Image credit: the_franz 

Flying Solo, Part 1

Part of the big let-down for Neil and Adam not making their flight to LA on Christmas was that their dad had purchased tickets for them to see Avatar that night. He canceled those tickets and definitely planned to take them at some point during their visit, of course. However, knowing that it’s a three-hour movie, I questioned whether Neil would be able to sit through all of it – he usually doesn’t make it all the way through movies in the theater. He often needs a break from the sensory bombardment of a movie theater and has to take a few walks during the film.

But something tells me that he’ll sit through all of this one. I know because I saw it tonight, and I was enraptured with the visuals. I got off work early to go see a late afternoon show, and it was sold out on a Tuesday. So I purchased a ticket for the 7 PM show and came back later. I, meaning myself. Flying solo. I am uber-introvert, going to movies alone and enjoying it. (I’ve taken myself out to dinner before, too.) I show up at the theater an hour early to get a good seat, and there is already a huge line. Even so, I am able to sit near the center, about three-fourths of the way back, which is my favorite area. I sit down next to a guy in his twenties with a scruffy goatee and watch as the theater fills to capacity. Moments later, I realize that not only is he scruffy, he stinks. I am accosted by the low-grade, but unmistakable, scent of permeating old sweat. As soon as I make this distasteful realization, another guy in his twenties with a full beard sits in the empty seat on the other side of me. They appear to not know each other, but they both are clearly hygienically challenged. The bearded one stinks too.

Are you kidding me? I yell in my head. What are the freaking odds? This is what I get for going to the movies alone! I get boxed in by two guys who are taking some time off from bathing. My olfactory sense is completely assaulted, and I momentarily consider leaving. How am I going to enjoy the movie while constantly inhaling these noxious fumes? But I tell myself that feces and vomit would be far worse and decide to employ shallow breathing and “tune out” the BO surrounding me.

And, no, nothing magical happened during the movie with regard to the stench. I wasn’t so enraptured by the movie that I didn’t stop every ten minutes or so and still notice the air around me. But it was tolerable, if only because I enjoyed the movie so much. Without going into a whole commentary about its humanitarian/environmentalist theme, I will say that it really affected me. What struck me the most is how we, as a whole, are perilously close to losing our sense of connectedness. I drove home crying, and it wasn’t because I’d been smelling old sweat for three hours.

I got home too late to call the boys. For some reason, I desperately want to talk to them about this movie, get their take on it. It’s obvious – missing them, I yearn to connect with them. But then I realize that I don’t need the phone to be connected to them. I can feel it at my core – the constant connectedness I have with them. It is always there. I know that they are well and having fun with their dad, while I enjoy some time alone. And I’m breathing more deeply now, too.

Christmas in an Airport

The hardest part of waiting is not knowing how long you’ll have to wait. – Adam, age 13

Come on, say it with me: “I will never spend Christmas in an airport.” That’s what I’d said all of my adult life and certainly believed that I never would. Then, after eight years of transporting my children 700 miles back and forth to L.A. to visit their father and dealing with harsh – and scary – winter driving conditions, we decided to take advantage of a new economy airline that offered non-stop flights to LAX from our little airport in Medford, Oregon. The boys were excited about their first solo flight, Neil had been prepped about not loudly saying things like “Can’t these people just start moving?!” while waiting to de-plane, and not mentioning 9/11 to airport security, and I was thrilled at the prospect of avoiding the 700-mile drive during winter. The only catch was that the economy airline only flew on Fridays and Mondays. The ticket cost for the Monday after Christmas was, for some reason, $100 higher (for each person) than for the flight on Christmas Day. At a little airport serviced by only four airlines, I thought, how bad could it be?

We sat there for six hours, dear reader, waiting for the fog to clear. We got there at 11:30 AM, an hour and a half before take-off, and did not leave that airport until 5:30 PM, when they finally announced that the flight had been canceled. The really maddening thing was that the three other airlines were all landing and taking off just fine, but the economy airline had stricter regulations than the other airlines. The officials kept telling us that “they’re circling,” “the pilot is waiting to attempt a landing,” and so on. For six hours. Six hours of watching other planes land, board new passengers, and take off. Six hours of crying toddlers (Neil covered his ears a lot), monotonous recorded airport announcements about not leaving bags unattended and using hand sanitizers “during cold and flu season,” and even a boisterous youth minister who took it upon himself to try to engage everyone and loudly started singing Christmas carols right behind my head. And Neil’s. Neil actually handled it better than I did.

The next morning we trundled back to the airport. The fog was worse than the day before. When we stepped up to the counter we were told that they had already delayed the flight, and there was no guarantee that the fog would clear by the delayed time either. The forecast was for fog all day. We couldn’t spend another day in the airport, not even knowing how long we’d have to wait, or if they would even fly at all. We walked back to the car and I called their dad. We decided to drive and meet half-way, as we’ve done several times a year for eight years. Eleven hours in the car. No one, especially Neil, was happy about it, but we braced ourselves and got on the road.

Of course, the day after Christmas is the worst day to drive. I-5 was two long streams of cars, northbound and southbound. Three hours into the drive, a minivan nearly merged into me. I braked, swerved to avoid it, and felt sick as fear and adrenaline coursed through me. We were inches away from being in the middle of a pile-up at 75 miles per hour. It was so hard to keep it together until the next off-ramp, where we stopped to refuel and get lunch. I sat in the restaurant calming myself, recuperating, relieved and grateful, trying to put the what-ifs out of my mind. We are truly, utterly blessed.

I called my mom, who lives near the airport, and she said that they were still socked in with fog, three hours after the boys were supposed to fly. She’d heard no planes coming or going. The thought that we would still be sitting in that airport for the second day in a row spurred me on. I felt much better knowing that we had done the right thing by driving. After we got back on the freeway, I saw a sign that made me want to joke with the boys. It was one of those green and white official highway mileage signs, and it read,  Sacramento 17, Los Angeles 391.

“Look, guys!” I said. “Only 391 more miles to L.A.!”

Adam, seated next to me, did not skip a beat. “Yay! We’re almost there!”

Even Neil chuckled in the back. “Yeah.” A year ago, he was just learning to recognize the humor in sarcasm. I think he’s got it now.

And at least, as I told Adam, with driving they know how long they have to wait. They know exactly how many hours it takes to get from our house to Dad’s house (eleven, including a quick stop for lunch). They see the familiar landmarks along the way, they recognize the various gas stations we use. After eight years, they know every bend in the road, all 700 miles of it. And the best part of waiting, I tell them, is knowing who’s waiting for you when you get there.