“It's cute. But, still, it's a harness for a child.”
I froze in my tracks, turning slowly toward the speaker.
“I'm sorry,” she said, apologizing the instant she realized anyone might have taken offense, her hands raised in a gesture that I wasn't sure whether to classify as defensive or supplicatory.
I'm sure my expression was stern. It comes from years of hearing people leap to judge the parenting skills of those who have more challenges in their lives than most parents can dream of — and that's saying something.
The young woman who frowned at and criticized my 5-year-old godson's cute little stuffed monkey-shaped harness didn't know any better. But that's the biggest part of the problem. Most people — whether they know it or not — know someone who has an autistic child or at least someone who knows someone who has such a child. But few understand what this disorder means for those children and their families.
One in 150 children in this country is now classified as being on the autistic spectrum. That number is even higher among boys.
They may be high-functioning and suffer from milder forms, such as Asperger's syndrome, which makes it difficult for a person to socialize normally. Or they may be severely affected and be unable to speak or interact with others at all, lost in their own worlds, suffering behavioral problems and unable to take care of themselves as a result.
A few, as depicted in the film “Rainman,” also have savant abilities — unique specializations that provide them with gifts, such as music, memory and math, that can't really be seen as offsetting the difficulties and challenges they face because of their autism.
In the case of my godson, whom I've written about before, there is a significant lack of speech development — one that left him essentially silent until he was nearly 2 years old. These days, with the help of daily speech and occupational therapy at the Sussex Consortium in Lewes, he's learning to go beyond a word or three and to use full sentences, even if most of them are still very simple.
We also deal with some… well, I'll call them “behavioral quirks.”
Even at 5, James still has an unusual fascination with things that spin. A toy top delights him, but woe to the fancy version that is too complex for him to work on his own. The adults must do it for him, over and over and over again — for hours, if need be. I've learned that lesson the hard way.
One doesn't tell James that we've watched “Toy Story 2” about 800 times too many in the last month and that we're going to watch “Monsters Inc.” just once before we see Woody and Buzz again.
I made that mistake over the weekend. I should have known better. But I sometimes push James' limits, mostly to see if he's getting better. He is, but it's slow progress, and too slow for him to go cold turkey on “Toy Story” anytime soon. He made a progression from disgruntled to near meltdown in about 10 minutes. I relented and turned “Toy Story” back on.
Most parents of young children are familiar with the typical toddler meltdown, leading on into the full-fledged tantrum, with its kicking and screaming. Most kids outgrow having such fits at the drop of a hat as they hit 4, 5 and 6.
Well, James acts his age — his developmental age, which is about 3. He's also just shy of the normal height for a 5 year old and about as physically adept (read: likely to be able to successfully open locked doors, roll down car windows and insert random objects into electric sockets).
Faced with a public outing in which he is in the middle of a crowd, James has no concerns about embarrassing himself or his caregivers. If he's agitated, he dances back and forth, rocking from one side to the other, oblivious to curious and concerned looks – and to wayward toes. If he's unhappy, he shrieks.
That was one of the things that led me to developing that stern face that rewarded the judgmental woman this past weekend.
A couple years ago, we took the kids on a quick grocery shopping trip while driving through Rehoboth. By the time we'd reached the checkout, James had reached his tolerance level. As we rushed to get our items paid for and get out of the store, he screeched shrilly and at the top of his lungs.
“That's enough, James,” his mother and I said in unison, firmly but quietly, so as not to make a bigger scene that we already had. “Yes, that is enough,” the cashier felt it necessary to add in a clearly disgruntled and disapproving tone.
Shocked that someone would openly judge a customer like that, I didn't say anything to him about it. We were soon out of the store and home, but I never forgot that moment.
I've since heard about families with autistic children who have pre-printed cards made up to hand out to strangers who give them the hairy eyeball when their child acts out in public: “Our son has autism. Please do not make eye contact with him or attempt to talk to or touch him,” one set of such cards read. It's a subtler way of trying to educate people than we've had the luxury of on some occasions. Still, people often judge.
I've seen a lot of bad behavior from kids out in public over the years, both before and after I had a child of my own. There are times when you know the parents are being neglectful, as the kids run around the store at full speed, knocking into people and merchandise, with parents nowhere in sight or busy with their own interests five aisles over.
I've been known to frown at this and wonder why they don't take a stronger hand with their kids.
In my child-free youth, I'd also seen kids walking in harnesses and debated whether the practice was demeaning to the child — treating them like a dog on a leash — or a practical response to a small child in a crowded place and all the trouble, and danger, they might get into. It certainly looked more comfortable than having your hand held up in the air for hours on end, gripped by a parent desperate not to lose contact.
But I don't think most of those parents had any idea the kind of trouble an autistic 5-year-old can get into. Add a big crowd, cars, noise, food cooking areas and open water, and you've got a mixture that could potentially be fatal — especially when that child does not yet know how to swim.
Autistic children frequently have no sense of danger, as James demonstrated one time by walking right in front of a child going full-speed on a swing, being instantly felled to the ground and never having seen it coming.
Avoiding losing track of your child for an instant in that kind of situation goes beyond issues of social appearances and comes simply down the practical matter of not letting it happen, no matter what. And for some kids, that means a harness – if in the form of a cute and perhaps aptly symbolic monkey on his back. It's a device that not only protects him but makes family outings workable.
A woman at the amusement park this summer remarked upon the harness, delighted, asking me where she could get one as she struggled to hold her 5-year-old son in her arms. She admitted that she feared to use it because she knew she would get those judgmental looks from strangers.
“He's autistic,” she explained, having likely done so many times before. “So is he,” I replied, reaching an instant understanding with her and yet still wishing that we didn't have to use that explanation to avoid being judged.
The only other choice for families like James' is to stay home and avoid any outside interaction, which in our household more often than not means a major case of the stir-crazies, leading to yet more meltdowns.
As much as we hate to do it, sometimes we do have to opt out of a children's theater production or leave James home with one of the adults while the other kids go out, even though we know the socialization and experience is good for all of them, autistic or not.
But we do insist on some degree of normalcy for James and the other kids in the house. That's why it was so heartbreaking for me that our simple trip out to Coast Day this past weekend had to be tainted with judgment over parenting skills because of something as simple as a harness that could, frankly, save James' life if he decided to bolt.
So, while that young woman was busy trying to teach children about fire safety on Sunday, it might have behooved her to think about other kinds of safety and the peace of mind that the parents so challenged to find a normal life for their children must strive so hard to achieve.
Bonus points to James' mom that she was more bemused than offended when I later told her what had been said. But she's learned to deal with a lot over the years. Having an autistic child teaches you a lot about tolerance.