Here We Are (Or How to Straddle Two Worlds While Balancing the Weight of a New Diagnosis on Your Head)

Here we are. Visitors in our own hometown, enjoying the familiarity of friends and family and tall green trees, but having nostalgic flashbacks of a desert life of beaches and cacti, of the pervasive smell of sand and salt water, of warm smiles and long walks. And of a cozy sailboat that sits on its stilts in the hot desert sun waiting for its life to return. We feel the whole range of emotions that comes inevitably with straddling two worlds, plus a barrage of other desperate and confused emotions that we did not see coming. Here we are, yet again in that “waiting time,” but this time one that resembles less the doldrums and more a tsunami wave as a new diagnosis slams us with its force.

If you’ve followed our previous posts or know us at all, you know that we have a strong-willed, intense, spirited kid. You know also then that we have had some major challenges with said kid. The slow decline of Dylan’s behavior from quirky to abnormal to downright incoherent and defiant taxed our wills and our mental health. And yet, we were the proverbial frogs in the slowly heating pot; we didn’t really comprehend the full extent of his intensifying behavior because we were with him all the time. We didn’t see how far into his own head he was getting, squeaking whale sounds all day as he clutched at his tattered Whaley, spinning or running in circles making a variety of engine noises, becoming nonverbal, incoherent, and defiant at the slightest whisper of school or work.

At the suggestion of good friends, who could see better from the outside in, we got him professionally evaluated when we got back to Anacortes. We filled out pages and pages of narratives and questionnaires. We made four four-hour round-trips to Bellevue and back for interviews, assessments, and feedback sessions to figure out what was going on in our son’s brain and to learn, if possible, what we could do differently to help him. We had gotten to the end of our creative parenting and our patience. We were so exhausted that we could no longer look for answers on our own.

“You’re going to meet with a doctor who’s going to help us understand how your brain works,” we explained. “She’ll play some games with you and have a lot of questions for you.” Dylan loved the games, and talked her ear off about cars and whales. Constantly. Flatly. He didn’t look her in the eye. He didn’t respond to her deliberate nonverbal cues. He didn’t respond to her life stories or ask her questions. He chewed on his shirt and sleeves. He chewed on my watch and rubbed his face along my arm. Memories of the toddler who lined up his cars in exact rows, screamed incessantly in crowded spaces, balked at most foods and offensive textures, refused to cuddle, and struggled with toileting came flooding back to me. The child whose behavior didn’t match up with or respond to what was written in any of the dozens of baby books lined up on our bookshelf. And so perhaps it shouldn’t have been so surprising when we received the diagnosis.

Dylan has autism spectrum disorder. Dylan is autistic. My initial reaction was to feel relief – relief that there was an explanation for his quirky, abnormal, and defiant behaviors beyond poor parenting choices (though I’m sure there were plenty of those, too!). Suddenly we could see the years of challenge and struggle and bafflement in a totally different light. But even as the relief of a diagnosis came over me, so did the weight of what it might mean for the future. What would this mean for his education? For Dylan’s personal and professional future? For the sailing trip? For our own careers and plans? Autism isn’t a phase to grow out of. There is no cure. There is no magic pill.

I began to feel slightly hopeful as I read the book Be Different by John Elder Robison (an Aspergian himself), who credits his engineering and business success to the intense focus his autism has given him. Or when a friend of mine said “the world needs people with Asperger’s Syndrome.”* Or when – in response to my comment that someone will find and build the technology to get us to Mars soon – Dylan said “Maybe it’ll be me.” But as I watched my momentarily nonverbal son hiss at his new 2nd grade teacher and try to bite her, I could only choke back my emotions and think quickly about what I needed to do right then to get him into a coherent, communicative state again, never mind encourage him to design a spaceship to Mars. It was that moment that I realized how much our lives had just changed.

So, here we are. With a serious diagnosis. With a million questions. And with a choice before us. We can stay and continue with Dylan’s school and therapy, giving him the opportunity to benefit from all that science and supportive institutions have to offer. Or we can continue on our sailing trip, an adventure over a decade in the planning. And there are a million options in between. After some brainstorming and thinking, we have ultimately decided to return to the boat and our adventure in November as planned, but with an even more flexible mindset than before. We now know that we need to be flexible not just with weather and social circumstances, but also with the needs of each member of the family.

We don’t know for sure what is best for each of us or for all of us as a family. We don’t know whether being in a structured school would be best for Dylan or being in a global environment full of wild creative kids learning to tackle real-life problems (while intermittently snorkeling and exploring hidden beaches and foreign ports). We do know that we will do whatever we can to work with Dylan’s strengths and interests and and to mitigate his debilitating anxiety. The idea of following a set curriculum has certainly been thrown out the window. Back on the boat, school is likely to involve lifting up the floor boards and learning about the diesel engine, listening to the engine sounds to detect a problem, studying pulleys and other places of mechanical advantage, analyzing the construction of new hotels along the Baja coast, and building castles out of dead cactus trunks. If we can pique his interest in geology, marine biology, and a little history as we head back into our nautical life, then so much the better.

We also know that we need to think about the needs of everyone else in the family, too. How do we meet the needs of our newly-minted 5-year-old who – despite always getting the short end of our attention stick – is already reading level 1 books, putting together 300 piece puzzles, memorizing all species of whales and dinosaurs, seems to have an artistic gift (which he didn’t get from either his parents, I can tell you), and is generally loving boat life? How do we meet the needs of Tom, who has been planning this sailing trip for over a decade and would happily keep sailing as long as money and sanity last? How do we meet my own needs, which I struggle to even name at this time, because I have lost complete track of, well, everything. Perhaps rediscovering them is my need. And does that best happen on the boat or elsewhere? And we can’t forget our poor aging kitty, who is now on thyroid medication and who periodically misses an easy jump onto the bed just to remind us that the clock is ticking.

Here we are. Stuck between two different worlds we both love and fear. Facing a future that might be filled with therapists, IEPs, medical insurance claims, or… might not be. There are so many gaping unknowns. And we need to remind ourselves that we are also here with the same kid we’ve known for seven years – spirited, willful, smart, and wickedly observant – but now with more information about the resources available to us and insights into his unique strengths, quirky behaviors, and sensory needs.

One thing we do know is that we all want to go back to the boat. The boat is home. Andy is desperate to go back and asks daily when we’re leaving. Tom and I love seeing our friends and familiar places, but it’s tough to be here when we know it’s only a pause. And Dylan even said himself a few days ago, “Life on the boat was practically perfect; I just don’t know why I was so angry.” We don’t know why either, kiddo, but this time we’ll do everything we can to make it smoother and happier for all of us.

*Informational Addendum: Asperger’s Syndrome used to be its own diagnosis under the previous Diagnostic and Statistical Manual of Mental Disorders (DSM-4), but is now included as part of the broader Autism Spectrum Disorders as defined in the new DSM-5. When people think of autism, they often think of Dustin Hoffman’s character in the movie Rain Man, but all the characteristics of autism – whether social, emotional, sensory, or cognitive – are indeed each on a wide spectrum. Autism is ultimately a delay or disorder of communication in some way, as well as a different way of learning and processing information. Essentially, the brain is just wired differently.

After spending weeks poring through books, I have learned a huge amount about autism (though I’m still only scratching the surface). Most importantly, I’ve learned that looking for the deeper “why” behind behaviors is the key to understanding what the child can’t communicate and what his underlying needs are (this is one of the key takeaways from Uniquely Human: A Different Way of Seeing Autism, by Barry Prizant). Even with a child who is able to speak well, like Dylan, it doesn’t mean that communicating needs, emotions, or socially expected reactions is easy.

I’ve also learned that autism is not only characterized by intense interest or fixation on something, but also by vastly unequal levels of skills in various areas (for example, extraordinary math skills but poor verbal skills, or incredible artistic talents but low social awareness, or, in Dylan’s case very high memory, spatial, verbal abilities and low fine motor, emotional, and executive functioning skills). The beauty of this dichotomy is that this is where invention, expertise, and innovation can come from. If you can tap into that passion and ability as an asset, there are so opportunities for a child to grow, learn, and contribute. In a lot of cases, including ours, it also means figuring out a way to mitigate the child’s debilitating anxiety and the effects of over-stimulation, as well as managing the stress of parenting a child who bucks most social norms and has challenges carrying out day to day tasks.

Some people don’t like having a diagnosis because of the narrow and prejudiced world a label may bring about. And while I definitely agree that a child is so much more than any label that is put on him, having a diagnosis has already resulted in positive effects in our household. Namely, as we are more understanding of Dylan’s behavior, so he is more relaxed and spending more time in coherent, responsive, and thoughtful states. He has also become more self-aware. When his therapist went to show him some of the toys she had brought with her, Dylan said proudly “I’m uniquely wired, so there might be some things I don’t like.”

We are beginning to collect the tools and methods we can use to help him cope better with transitions, surprises, over-stimulation, new situations, and fear. And we’re hoping that we can capitalize on his excellent spatial skills and intense passions – cars, engines, building, experimenting, and whatever else comes up – to foster a kid who will be able to thrive and turn his unique wiring to his advantage.