Miracle Run: Watching My Autistic Sons Grow Up- and Take Their First StepsInto Adulthood - Softcover

Although I had mixed feelings about them falling in love, Ifirmly believed that Stephen and Phillip had the right to applyfor and to try to get their driver’s licenses. If they passed thewritten and the driving tests, demonstrating the competencythat any other citizen possessed, then why not?

On the other hand, I had some pretty good why- nots inmind. The anxiety level they both exhibited in new situations,especially when exposed to things like loud noises, would potentiallymake them a danger to themselves and to other drivers.All the medications that Phillip was on and the unpredictableinteractions among those drugs didn’t make him a good candidatefor driving. When I stacked those reasons up against theirstrong desire to drive, and what more potent symbol of a teen’sfreedom and independence exists than driving, I was torn. Ididn’t want to be the one to stand in the way of their dreambeing fulfilled. To give you a better idea of how much drivingmeant to him, Phillip had written a song aptly titled “TheDMV Song.” I didn’t like to ever play favorites, but I could reasonablyimagine Stephen being able to earn his license. With Phillip, I thought the odds were stacked against him.

On one occasion, I took them both to the DMV office. Iturned them loose after telling them which line to stand in.I sat in a waiting area with my fingers crossed, hoping thatthey’d both fail the written test. I knew that would greatly disappointthem both, but failing on their own was better thanme not allowing them to do something they wanted so badly todo. The first time Phillip took the written test, I could see thathe was struggling. I don’t know if it was nerves or what, but Icould read the panic in his eyes as he scanned the questions.

That surprised me since they had both studied very hard forthe test. When Phillip completed his test and brought it to theclerk, he kind of shuffled up and looked as though he was aboutto collapse with in himself. It took a few moments for him toget his score, and when he was called back up, it was clear thathe hadn’t passed. I breathed a deep sigh of relief. Stephen hadalready passed the written portion of the exam and was in lineto take the vision test. I now only had one to worry about.

Then I noticed that the clerk had taken Phillip aside. I didn’twant to make a scene, so I stood up and inched my way closer towhere the pair was standing. The clerk, obviously very sympatheticto Phillip’s plight, was asking him a series of really basicquestions about driving. The next thing I knew, he was shakingPhillip’s hand and congratulating him for passing the writtentest. I couldn’t believe it. It was a nice gesture, but all I couldthink of was that he was hoping that Phillip wouldn’t make itpast some of the other hurdles he had yet to face.

As it turned out, neither of the boys passed the drivingportion of the exam. I was so relieved. They both vowed to workharder and to pass the next time. As bad as I felt rooting againstmy sons, I knew that in the end their not getting to drive was agood thing. I would hate for them to do harm to themselves andto another driver or pedestrian. Balancing what is right for themwith the needs of the larger community is an ongoing task.

I believe that someday they will both be able to drive. Quitea few high- functioning autistics do, and I feel that once thetwins mature a little more and learn to deal better with loudnoises and such, they will be good drivers. One thing is for sure:they would never get lost. Stephen especially is like a humanGlobal Positioning Satellite. I’m not fond of driving, and I frequentlyget lost, but if Stephen or Phillip is in the car with me,I never have to worry about finding my way. It is uncanny howwe can be traveling in some unfamiliar place and they alwaysmanage to get me back on the road to home.

The twins still talk about getting their licenses, and I thinkthat one day they will. They just have to be patient, a virtue whoseimportance we all became acutely aware of throughout the years.

As for that other major adolescent rite of passage— first love—I knew I wouldn’t be able to have the proverbial birds and the beesdiscussion with Stephen and Phillip. I knew that my nervousnessand awkward attempts to communicate with them aboutreproduction and sexual intimacy would send the wrong signalto them. If I stuttered and stammered, hemmed and hawed,turned beet red and blanched at any of their questions I thoughtwere too frank, all I would do was add to their confusion. I alsoknew that I owed it to them and to my daughter to make certainthey received the proper information about sexual matters. Thereis a five- year age difference between Ali and the twins, they havedifferent fathers, and though there was never any suggestion of inappropriate conduct on their part, I was paranoid about custodyissues due to my previous experiences with child welfare folks.

For that reason, I sent the boys to a psychologist when theywere about to enter their teens. The boys had received someinstruction at school about reproduction, mostly a very clinical,very scientific parts- and- process inventory that had little to dowith their real world concerns. I wanted them to go to someonewho could speak with them on their level about all kinds of matters that I would have never been able to bring up: nocturnalemissions, masturbation, intercourse, spontaneous erections,and all the other things that had a blush factor of 10 or more.

Along with a discussion about those issues, I wanted thetherapist to help me instruct the boys on what was appropriatebehavior— not simply sexually but socially— with members of the opposite sex. I knew that the boys had developed an interestin girls and women. I used to bring home outdated magazinesfrom the off ice— People and Cosmopolitan, mostly— andStephen and Phillip would read them. They both seemed tobe drawn to the ones with the photos of female celebrities onthe cover. That was fine and normal, but I also wanted them tolearn that what they saw on the covers of the magazines andwhat was in store for them in reality were two different things.

Because of patient- client confidentiality issues— and even If there weren’t those constraints placed on a therapist, I wouldn’thave asked anyway— I don’t know and can’t tell you the detailsof the discussions the boys had with him. I respected their privacyenough and trusted in the therapist enough to simply takethem to the appointments, sit patiently in the waiting room forthe hour to lapse, and then drive the boys home. Later, whenDoug learned that the boys had received some additional sexeducation through the therapist, he referred to him as “DoctorLas Vegas— what they discuss in his off ice stays in his off ice.”And that’s exactly as I intended it.

I knew my limitations, and I didn’t want them to interferewith the twins getting the information they needed anddeserved. I was willing to let go of my control over the situationand let someone with far more expertise than I possesseddo the job for me.

Stephen and Phillip have both expressed a desire, as I’vementioned before, to date and to eventually marry. Stephen’sfirst foray into high school romance serves as an object lesson inthe ways of the autistic heart.

Stephen’s self- confidence was boosted enormously by thepress attention he was receiving. As one student told me when Iwent to pick the boys up from school— they were now consideredBMOCs. I had no idea that kids in the nineties still used a phrasefrom my teenage years, an expression that even predates me, butif being a Big Man on Campus was what the twins were, then Iwas glad. I knew, of course, that this description was exaggerated.Agoura High was like most schools, where the football quarterbackand the homecoming queen garnered the attention of thejocks and preps, were silently mocked by the skater dudes andthe other social outcasts, and looked at with envious longing bythe wannabes. There were other cliques, I’m sure, and Stephen’srunning achievements meant he was no longer among the anonymous,faceless crowd who secretly hoped for attention but foundcomfort in blending in. Though the Supreme Court had outlawedone kind of segregation in the schools, another remained deeplyentrenched— the cool kids and the not- cool kids could occupy thesame physical space, but in a physics- defying fact of high schoollife, the cool kids could render the others invisible and mute.

One young woman who seemed to operate beyond all thelaws of the social physics of high school was Laura Jakosky.She was the lead runner on the girls’ cross- country team, sheexcelled academically, she was a student leader, and she was oneof the most popular and attractive girls at the school. A leggyblonde with long hair and eyes the color of the Pacific, she wasa walking Beach Boys’ song. One day, she did the unexpected.She broke ranks and asked Stephen his name. Who couldblame him for falling instantly in love?

Each spring, the school held a Vice- Versa dance, their variationon the Sadie Hawkins Day dance, when the girls wereexpected to ask the boys out. Stephen convinced himself thatLaura liked him and was going to ask him, so he purchased ticketsto the dance and waited expectantly for her to call. We learnedmuch of this after the fact. We knew that Stephen liked Laura.Doug and I both tried to talk to him about what was appropriatebehavior and how he could go about asking her out on a date If that was what he wanted to do. Doug tried to impress upon Stephenthe importance of not just being a gentleman but being confident and specific. He said that he should have a plan in mindfor what he wanted to do on the date. He showed Stephen themovie section in the newspaper and told him that instead of justlamely asking a girl if she wanted to go out, he should say that hewanted to take her to the movies and that X was playing at thistime at this theater and would she like to go.

We made it clear, or so we hoped, that we weren’t talkingabout Laura specifically but with girls generally. We were tryingto remain neutral on the Laura issue. We were in a tough spot.We knew Laura because of her association with the cross- countryteam, and we knew her by her very positive reputation. We knewthat a girl like Laura could pick and choose from among thecream of the crop of young men at Agoura High School. How doyou explain to your teenage son, one whose self- confidence was sonewly formed as to be especially fragile, that he was aiming toohigh, that, as the expression goes, Laura was out of his league?

We could sense that Stephen was setting himself up for apainful fall, but who among us hasn’t been in the same position?Though the inevitable would likely hurt, we felt that if we reallywanted Stephen to socialize and integrate himself fully into life,some painful lessons were going to come his way. As hard as itwas for me to let go, I knew in this case that my interfering wouldreally disrupt Stephen’s development. I had one ally in this regard.

Apparently, Stephen had made his feelings for Laura known.He didn’t verbalize them, but when he was at track practice, atevery opportunity he would maneuver around so that he couldstand next to her. He lacked the courage and skills to say hello andengage her in conversation, so he was essentially lurking around.Of course, Laura knew about Stephen’s condition and was patientwith him, but she must have expressed her discomfort to her teammates.Word got back to Coach Duley, but he refused to interveneon their behalf. He later told me that no matter who was involved,unless something illegal or potentially threatening was goingon (which there wasn’t), he would have expected the kids to sortthings out themselves. He wasn’t the type to cross the line and getinvolved in their personal lives unless there was a clear need to doso. We didn’t know anything about this until after the fact.

Days before the dance, Stephen must have learned that Laurawas not going with him but with someone else. He ran off insteadof going to practice, a less- than- mature thing to do and a habit of his when he was disappointed. When I went to school to pick himup after practice, I immediately called the police when I learnedhe hadn’t shown up. He had already been missing for three hours.The Lost Hills Sheriffsent forty deputies and park officers; theywere joined by what must have been a hundred volunteers from thecommunity— athletes, parents, store owners, and even one elderlywoman whose self- sacrifice and compassion had me in tears.

The search went on, and desperate for clues, one of the deputiesasked Phillip if he had any idea where Stephen might havegone. Not one to willingly disappoint anyone, Phillip said, “Yes.”For two more hours a trio of deputies trailed after Phillip as he ledthem around and through the campus. He talked to them abouthis heroes, John Lennon and Eric Clapton. He asked the officers if they played a musical instrument. They tried to keep Phillipfocused on finding Stephen, but Phillip had found three newfriends. He would have kept them out there all night, but whenthe deputies worked their way back toward the front of the school,they spotted Stephen in a squad car. He was clutching a note inhis hand. He’d written a love letter to Laura while hiding in theAndy Gump Porta- Potty less than a mile from the school.

I went to get him and did my best to find the words to consolehim, but he really didn’t want to hear anything from me.I felt so bad for him. Coach Duley was sympathetic and calledStephen the next day to give him the “other fish in the sea”speech. I knew it was too soon to talk to Stephen about makingmore appropriate choices in terms of how he expressed hisdisappointment. Running away wouldn’t solve anything, but Iknew that he was angry, embarrassed, and possibly hoping thatby running away he was showing Laura and everyone else thedepths of his feelings for her. Though his choice didn’t demonstratethe greatest degree of emotional maturity, he was stilljust a kid, as much a victim of his hormones and lack of impulsecontrol as any teen. He was confusing getting someone to feelsorry for him with really having a deep affection for him, a trapthat quite a few adults I know sometimes fall into.

Laura’s family called us to explain her position. She wantedto be sure that Stephen understood, and that we understood,that she did like Stephen as a friend but that was all. I thankedthem for phoning, wishing that Laura had made the call herselfor, more especially, that she’d spoken to Stephen directly. Weweren’t in any way blaming her, but we were still left with thedifficult task of explaining some of the social complexities andnuances of the situation to our brokenhearted autistic son. Stephentended to exist in a more black- and- white, on- or- off worldof absolutes. I think that was why running appealed to him somuch. You knew who the winners and losers were because of theabsolute certainty of the stopwatch. There were few gray areas inathletic competition. If you did lose, you knew by exac...