There Once Was a Boy Named Lucas Alexander: A Beginning

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(Image description: black and white photo of a four-year-old boy with short hair, bright eyes, and a slight scar on the bridge of his nose, nestled inside of a blanket fort with stuffed animals. He looks directly into the camera and smiles with closed lips. His right hand is cupped on his chin; his right pinkie finger touches the corner of his mouth.)

When my son was 5 years old and in kindergarten, I used to tell him *social stories. Once a week, every week for about six months we drove an hour in each direction so he could go to an Occupational Therapist who specialized in sensory therapy. Inevitably he would have something to process in the car, something that had gone wrong at school, some way in which he was stymied as he attempted to learn how to behave in “expected” ways. Kindergarten was brutal for him, but we’ll get to that later.

I started each story with “There once was a boy named Lucas Alexander.” Lucas is similar to his first name and Alexander is a derivative of his middle name. It’s a name that is close enough to his own to inspire kinship, but dissimilar enough for him to buy into these stories being about someone other than himself. Lucas Alexander got into all sorts of mischief. My son was constantly baffled by how Lucas Alexander’s life seemed so similar to his own! If my son lost control of his body and hit another kid because his arms were flailing, Lucas lost control in a similar way. If my son got in trouble for climbing everything because he needed space and quiet, so, too, did Lucas.

At the end of every story, I would ask my son for advice. What would you tell Lucas to do in this situation? How would you encourage him? And we would problem solve together, coming up with ways in which we might help Lucas feel more in control of his environment. We validated the difficulty of each situation; thought / talked through multiple perspectives; and most importantly, we comforted Lucas because we knew he was miserable, too.

I’ll admit that I didn’t really know what I was doing; I literally made them all up as I drove. I was desperate for a way to help my child as he (mostly figuratively, sometimes literally) hit the wall nearly every day in his traditional school setting. My then-partner (now my husband) suggested social stories as a way to help my son process his experiences. They did help, at least for a while. Many, many tools we have tried help for a while. My son’s brain is insatiable. Once he understands a construct, he has “conquered” it and needs to move on. It took a couple of years for my son to realize that these stories were about him, and once he did, the stories no longer held the same power for him. I don’t tell the stories anymore because he is able to process in different ways now. But he remembers Lucas Alexander with fondness.

This is a blog about the ups and downs of raising a twice exceptional child, a child who is both gifted and learning-disabled. I know more now than I did when he was 5 about how much space he needs, how much recovery time he needs after a sensory-rich experience, how certain activities are likely to cause overload and are best avoided unless he initiates them. I know more about how his giftedness predisposes him to a certain learning style. I have learned more about Autism and Neurodivergence (terms that are not synonymous, and if you are interested in knowing more about these and other key terms, you should definitely read Nick Walker’s “Neurodiversity: Some Basic terms and Definitions“), although I’m not an expert. I have learned that when he experiences difficulty, it is usually fueled by “can’t” instead of “won’t.” I have learned that what he craves most is someone to listen. (Don’t we all?) After years of advocating for my son in school settings–sometimes successfully, and other times not so much–and experiencing with him how our society doesn’t even come close to graciously accepting difference, I have developed a deep certainty that I would (to paraphrase the mantra of Parenting Autistic Children with Love and Acceptance) rather change the world than change my child.

I am an academic by training. I have a Ph.D. in Musicology and taught at a public university for ten years. I am also a writer and editor. I am not “that kind of doctor,” and I’m certainly not an expert in disability advocacy. But I can write, I can read, I can do research, and I can learn. I can admit my mistakes and question my ableism. I can share what I learn with others, and I can add my voice to those who work tirelessly for acceptance (not awareness!), love (not hate!), and understanding (not fear!).

*Social stories are a common tool for therapists, teachers, and parent-caregivers who work with children who are on the Autism spectrum or have ADD / ADHD. Learn more about how to construct your own social stories here.

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