{"id":2448,"date":"2013-02-25T13:14:10","date_gmt":"2013-02-25T21:14:10","guid":{"rendered":"http:\/\/heatherhaley.com\/onelife\/?p=2448"},"modified":"2013-02-25T13:14:10","modified_gmt":"2013-02-25T21:14:10","slug":"life-and-death-on-the-spectrum","status":"publish","type":"post","link":"http:\/\/heatherhaley.com\/hh2\/?p=2448","title":{"rendered":"LIFE AND DEATH ON THE SPECTRUM"},"content":{"rendered":"
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This is a difficult subject, raising a child on the autism spectrum, especially painful in the wake of Newtown. I was heartbroken by news of the tragedy and dismayed to learn the shooter had Aspergers.<\/p>\n

I felt both great empathy and unease watching the PBS Frontline documentary, Raising Adam Lanza<\/em>, <\/a> about the relationship between Adam and his mother Nancy. Though experts agree individuals with Aspergers<\/a> are no more prone to violence than people without the developmental disability, I worry the public will characterize kids on the spectrum as aggressive, a huge setback in hard won autism awareness.<\/p>\n

My son is two years younger than Adam Lanza and finding a proper diagnosis was a long, arduous struggle, finally achieved at age 10, about the same age Adam was when he was diagnosed. Initially Junior was erroneously perceived as having a \u201cmoderate to severe language disorder.\u201d I still don\u2019t know what the heck that means but he received years of speech therapy, which as it turns out was the last thing he needed, being highly functioning and beyond verbal to the point of verbose. It\u2019s body language he doesn\u2019t get. More details on this and our desperate search for information are at this previous blog post <\/a>and the only other time I\u2019ve publicly addressed my son\u2019s ASD.<\/p>\n

Adam Lanza had initially been diagnosed with SID, Sensory Integration Dysfunction, also known as SPD, Sensory Processing Disorder<\/a>. It\u2019s not a recognized diagnosis nor included in the DSM-IV-TR Diagnostic and Statistical Manual of Mental Disorders. As reported by Susan Donaldson James, \u201cWhether SPD is a distinct disorder or a collection of symptoms pointing to other neurological deficits, most often anxiety or attention-deficit hyperactivity disorder (ADHD), has been debated by the medical community for more than two decades.\u201d Adam Lanza\u2019s lifetime.<\/p>\n

My son\u2019s sensory issues were well documented, considered part of his ASD and certainly challenging. He abhorred particular fabrics, ripping out tags and discarding the socks with \u201cstupid seams.\u201d Refusing to wet his head, hygiene was a serious concern. It took years to overcome his anxiety and get in the shower on a daily basis but he still doesn\u2019t know how to swim and refuses to take lessons.<\/p>\n

Unlike a lot of kids on the spectrum, our son\u2019s motor skills were\u00a0fine. He began walking at 10 months, was a prodigious golfer with a beautiful swing everyone envied. Though shy with strangers, he had no problems with physical contact and was always affectionate with family. He\u2019s less demonstrative as a teenager but if I ask for a hug, he delivers a hug with no qualms.<\/p>\n

I may seem anxious to point out how my child with Aspergers is different from Adam Lanza, but because it manifests in a seemingly random but singular fashion, every child on the spectrum is different. Unique. Our choices, options have been dictated by how ASD has affected our child.<\/p>\n

I got the impression mother and son were becoming isolated and that Nancy Lanza was attempting to break free of that dynamic by getting out and socializing while fostering Adam\u2019s independence, leaving him on his own.\u201cShe was always very positive. She never talked about having a rough day,\u201d according to her friend John Bergquist. That struck me. Aspergers is such a nuanced condition it\u2019s nearly impossible to explain. And I think that by portraying everything as okay, downplaying the problems, parents are attempting to shield their child.<\/p>\n

Reluctant to leave my son alone, I\u2019ve been criticized and ridiculed, called overprotective and overbearing. I don’t think people realize the safety risks involved. Junior is in his own world. Oblivious often. I have no idea how he would handle someone coming to the door. What if the dogs got away on him? We own two rambunctious terriers, which he neglects. Once he forgot a pizza in the oven and set off the smoke alarms. Fortunately, I was home. What if? If the house had burned down, surely I would be judged as a bad mother.<\/p>\n

Obviously an intelligent woman, Nancy Lanza probably did just about everything she could think of to help her son, though I have to agree with Richard Novia, a Newtown High school adviser who thought her misguided. Novia assisted the technology club Adam was in and never saw any signs of hostility in the child. Though a gun owner, Novia thought that teaching Adam to shoot as a way to bond was a mistake, \u201ca mistake that cost her her life.\u201d<\/p>\n

Hence the complexity. People hunger for the sound bite, the easy answers but life with a child on the spectrum is complicated. Nancy Lanza wasn\u2019t simply a gun nut and her son was more than a kid obsessed with video games.<\/p>\n

I sensed that after separating from her husband, Lanza was essentially on her own, advocating for her son a lonely quest. Certainly mine has been isolating and frustrating, wasting a lot of time trying out countless programs and interventions. Thankfully, we found an alternative school in our community, a safe, welcoming environment where Junior was able to make friendships that he maintains to this day.<\/p>\n

My son suffered anxiety and rages\u2014melt downs we called them\u2014often lasting an hour or longer. It would take both his parents to hold onto him so that he couldn\u2019t hurt himself or anyone else. I was relieved when they began subsiding around age 11. It would seem that with some kids on the spectrum, anger and alienation build instead of dissipating.<\/p>\n

An avid gamer, I\u2019m confident my son knows the difference between fantasy and reality. His stepfather is a hunter and rifle owner who once took 8-year-old Junior and friends skeet shooting while we were vacationing in Hawaii. The noise and power of the recoil against his shoulder frightened Junior. He came away from the experience with a healthy respect for guns and no desire to fire one. Not in the real world.<\/p>\n

His father, a car enthusiast, built Junior a custom driving seat and steering wheel to go with his driving games. He always handily aced everyone at the local arcade, much to their chagrin, but now that he\u2019s learning to drive, has acquired an equally healthy respect for speed, with no desire to race, at least, \u201cnot in the real world.\u201d<\/p>\n

He has long lobbied for a computer in his bedroom and we have always insisted on keeping it in the family room, where he is closely monitored and the family does indeed hang out together, often engaging in discussions on a myriad of subjects. We\u2019ve worked to make him media savvy. Junior understands the agenda of commercials and \u201cconsiders the source,\u201d delighting in sharing things he finds absurd, not surprisingly much of it originating with Fox News.<\/p>\n

The boy\u2019s focus has shifted through the years from golf, to cars, to trains to video games, machinimas\/video editing, to podcasting and writing. Lately he owns as many books as video games. Where once he refused to read any fiction, now we discuss plot and characterization. He has the potential to be an editor, and or director; it is our hope to enroll him to the film studies program at the local university. With old school punk rockers for parents my son has been exposed to music from a tender age, and though he loves music-more so now as a teenager-will not consider attending a rock concert. We\u2019ve collaborated on videopoems. He and his stepfather are working on a documentary about gaming culture. Junior believes adamantly that video games do not spur violence, not in the real world, and crime is due to a combination of factors. With increasing self-awareness, we are able to candidly discuss these issues as they relate to him.<\/p>\n

Our son is fortunate. Along with a devoted mother, he has two loving fathers, friends and family. We work closely with a skilled, compassionate behavioural consultant, Blair Armstrong<\/a>, who\u00a0focuses on relationships, emotional development and individual\u00a0differences, making for a strong support system, \u201cTeam Junior.\u201d We are cautiously optimistic that he will achieve independence one day but our main priority has always been quality of life, right here, right now. We respect both his gifts and limits, allow him to set his own pace, avoid pressure or harbouring unrealistic expectations, difficult with societal demands for conformity. A school administrator once said to me, \u201cWell, he\u2019ll just have to fit in.\u201d \u201cWhat if he can\u2019t?\u201d She shrugged.<\/p>\n

Apparently Nanzy Lanza encouraged Adam to aspire to be like his uncle, her brother, a military man. She enrolled him in Boy Scouts and taught him how to shoot. But then she began to discourage her son, realizing \u201cit wasn\u2019t right for him.\u201d<\/p>\n

Despite the tantrums, I never sensed malice in my boy. Hurt and confused at times, today he a strong, sensitive individual who stands up for himself without being adversarial. I am reminded that his father wanted to name him Clint when he was born. I balked. Clint is a fine name but our son is no Clint.<\/p>\n

But Junior did lash out rather than shutting down, perhaps that is healthier than withdrawing. Shielded from bullying, he is not alienated or depressed, his self-esteem intact. Of course I can\u2019t be objective but others tell me my son is charming and pleasant to be with.<\/p>\n

Who knows how Adam Lanza was feeling? No one. No one can predict accurately but if an Aspergers individual fixated on guns becomes depressed or angry, obviously they are capable of acting out.
\nAutism did not cause this crime. Nothing in life is so simple, ASD just one aspect of many. And sadly, no matter what kind of mother Nancy Lanza was, her true character is obscured and she will be condemned.<\/p>\n

1<\/div>\n","protected":false},"excerpt":{"rendered":"

1 1 This is a difficult subject, raising a child on the autism spectrum, especially painful in the wake of Newtown. I was heartbroken by news of the tragedy and dismayed to learn the shooter had Aspergers. I felt both great empathy and unease watching the PBS Frontline documentary, Raising Adam Lanza, about the relationship […]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[10],"tags":[17,33,34,40,149,152,207],"_links":{"self":[{"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=\/wp\/v2\/posts\/2448"}],"collection":[{"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2448"}],"version-history":[{"count":0,"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=\/wp\/v2\/posts\/2448\/revisions"}],"wp:attachment":[{"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2448"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=2448"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/heatherhaley.com\/hh2\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=2448"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}