October 31st, 2013
My son doesn’t really understand holidays, but he enjoys their trappings, Christmas carols and Easter egg hunts. Halloween is his favorite, with its pumpkins, candy, and monsters especially.
When my son was younger we read him books about poky little puppies, and very shy kittens, and donkeys with magic pebbles. But his favorites were those about monsters. We went through two copies of The Story of Growl, My Monster Mama Loves Me So was in heavy rotation for a while, and, like most children, he is an enthusiast of The Monster at the End of This Book.
And his fandom transcends the literary. His “monster blanket” — a quilt with a mosaic of smiling creatures — is one of his few material possessions to which he has a strong attachment. He enjoys playing Go Away Monster! He has monsters on his posters and on his backpack. One year for Halloween we even dressed him as Max from Where The Wild Things Are, a role he was seemingly born to play.
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The roles that monsters and clowns play in childhood seem to have transposed in recent decades (since the advent of Elmo and Stephen King’s It, I reckon). Even so, my son’s affinity for former seems greater than most. He certainly shows no fear of them.
In fact, he is overtly frightened of little. He was so fearless about heights when younger that we wondered if he truly understood the danger that they posed, and I was reluctant to let him ascend to the top of the huge climbing structure in our local playground. One day I relented, though, and allowed him to climb to the top while I flitted about directly below, ready to break his fall should he slip. In the end it became clear that he is as attuned to the perils of heights as any other kid, and that my fear had been unnecessary.
He is also bereft of social fear, for want of a better phrase. He doesn’t worry about fitting in, or if he has too few friends, or if he lacks the cool new status symbol. He seems unconcerned with how others view him, or how they might treat him. I don’t know if he understands the concept of the future, but, if so, it does not weigh on his mind.
But here again my wife and I scurry around, fearing on his behalf. We arrange play dates with his classmates so that he has friends. We fret about teasing and bullying. We worry that, if someone were to hurt him, he wouldn’t think (or know how) to tell someone.
In this respect we are no different that the parents of neurotypical children, concerned as they are with these very same things. But when it comes to the future, we have a fear that is specific to a special needs child: we don’t know what will happen to him when we are gone.
Despite the early intervention and intensive therapy, it seems unlikely to me that he will ever be able to live independently, nor will he have a partner of any sort. (But, again, I no longer make predictions.) Where then will he live? And who will serve as his caregiver?
Fortunately, we are not the only parents thinking about this. It sometimes seems like the autism community is laying tracks down in front of us, just at the moment we need them. Shortly after my son was diagnosed services for children with autism expanded enormously (which isn’t to say that it wasn’t a struggle to find and secure them), and I was able to find a job that had recently started providing medical coverage for those treatments. We managed to get him into a newly founded special needs elementary school, which became a K-12 a few years later. Now, as we turn our attention to his long-term well-being, we learn of others who are doing likewise for their own children. From a recent article in The New York Times, entitled The Architecture of Autism:
The life expectancy of people with autism is more or less average. Here is another truth, then, about children with autism: they can’t stay at home forever.
This realization — as obvious as it is worrying — has recently stirred the beginnings of a response from researchers, architects and, not least, parents. In 2009, a pair of academics, Kim Steele and Sherry Ahrentzen, collaborated on “Advancing Full Spectrum Housing,” a comprehensive design guideline for housing adults with autism….
Knowing that there are others out there who struggle with these issues, and who are working to build an infrastructure to address them, brings me great comfort. But I am not without some sleepless nights.
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Putting a costume on my son and taking him Trick or Treating is a bit risky, but he usually takes it in stride. This year we got him a simple bat costume, and to our surprise he was amenable to putting it on. (We had to compromise on the hat with ears, though: he would wear it, but we couldn’t tie the strings below his chin.)
When the door to the first home opened I prompted him with “what do you say?”, and he replied with a hearty “thank you!” He was handed a Milky Way, which he promptly unwrapped and ate, returning the wrapper to the bowl of the homeowner.
He got the hang of things after a few houses, although “thank you!” remained his go-to line. We visited our immediate neighbors, all of whom have become familiar with our son since the elopement, and assumed that would be sufficient. But when I asked if he was done, he said “more Trick or Treating”, and we continued around the block. A banner year, to be sure.
His first words, when we returned to the house, were “bat off,” a fairly sophisticated utterance in that it implied awareness of his costume’s motif. We stripped him down to his PJs and let him partake in some Skittles before putting him to bed. When I checked on him several hours later he remained wide awake, still excited about the evening’s activities.
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I occasionally worry about the future, but spend most of my time enjoying the present. Raising my son is a little like Halloween: sometimes scary, but a whole lot of fun.