PDD-NOS

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism…are identified. PDD-NOS encompasses cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.

My son has PDD-NOS. The ‘thing’ that has concerned me for the last 2 years at last has a name. The reason that he can’t quite interact properly with his peers, and the problem that kept him speechless until he was 27 months old, those concerns, aptly identified by the letters that will likely define him forever, now have a face: a smoky, soft-edged face that defies specificity or gravity, other than to offer, “well, clearly something’s wrong”.

I didn’t want it to be true, but I knew that he wasn’t developing normally, that there was something more than ‘kids can’t read calendars’ going on. And then today, I got confirmation of what I’d known and feared. My son has a developmental disorder. At 1 o’clock, I was a woman with a concern. At 2:30, I became a mother with a Special Needs child.

Let me go ahead and detail all the “good” news embedded in this before I descend into the torpor beckoning me. PDD-NOS, while lying on the ruler of Autistic Spectrum Disorders, is just barely over the one-inch mark. I heard once that Asperger Syndrome, also on The Spectrum, is sometimes referenced as “autism light”. If Asperger is Autism Lite, then PDD-NOS is Asperger Lite.

If The Spectrum were a shelf of beers, then Asperger is Miller Lite and PDD-NOS is Grolsch or Corona. Really, though, it’s more like Ny-Quil. It’s not a beer, and you probably wouldn’t get thrown into the Big House if you got caught with an open bottle of it in your car. There’s no 12-step program for Ny-Quil addicts, except on the AA-spectrum of alcoholism illnesses. You’re not diseased in the traditional, everyone-recognizes-it way, but you’re definitely not normal, and you’re not functioning at 100% in anything. Judgment is impaired. Processing slows. The world looks different, and since your brain is coated, you can’t say how: you only know that it’s so. You’re not drunk, but you are tipsy, and that still counts. Buzzed driving is drunk driving, and PDD-NOS is autism.

So it is with my son. Look at him, he’s normal. Talk to him, something’s off. Watch him from across the park, he’s a typical 4-year old. Sit beside him as he plays trains, and it’s not quite right. Observe him in his “special needs” preschool class, and you wonder if he’s in the wrong place. Drop him into the ‘normal’ preschool class, and you’ll see that he isn’t. His disorder isn’t glaringly obvious, and in some ways that makes it harder. A full-on autistic child who stares at the wall or shrieks instead of speaks gets the benefit of all the Special Forces racing into the room, bearing studies and specialists and help. Someone like my boy, whose ailments are subtle and shifting, gets shrugs and sighs and toss-out comments such as ‘don’t be such a worry-wart. He’s normal. Just look at him. He’ll grow out of it.’

Except he won’t. PDD-NOS, like any of its brothers on The Spectrum, is a pervasive, chronic disorder. It affects his brain, and the way he thinks. He processes things differently, and there is no way to fix it. I can teach him how to change his behavior, and he’s a smart boy (luckily the disorder does not affect learning or intellect in the traditional sense), so he’ll learn things like social space and eye contact and taking turns, just as a normal child would learn a foreign language. It'll be just like that, too, since PDD-NOS kids don't process the subtleties of non-verbal communication. They don't see it, because their brain doesn't see it. He might some day pass for ordinary, and I hope some day he will, but still, he’ll always have this problem. This is who he is. Forever.

My son, who I conceived on the day I wanted to, and who went full term without so much as a hiccup; who I birthed without drugs or cuts or anything strapped to my abdomen, the boy I nursed for 4 years and kept clear of immunizations and who had at least 1 parent at home full-time for over 3 years, this child, my son, bears a lifelong problem for which there is no cure. Nobody knows what causes this, and nobody knows how to fix it. You can't even get a definitive diagnosis-there are no physical symptoms: it's all in observation and professional opinion. The diagnostic criteria are as shadowy as the disease they report on.

I don’t pray, and I’m not about to start, but I did think about who my child would be once he grew up. I discarded any temptation to wish for a virtuoso or a world-class athlete. I didn’t care about any of that. I wanted a healthy child. I asked for healthy, and I got healthy. He’s barely had 2 colds his whole life. He’s not allergic to anything, he sleeps without difficulty, and he hasn’t had a drop of antibiotic in his life. He’s ill so rarely that the children’s Tylenol in my medicine cabinet expires before I can break the seal on the bottle.

He’s right on top of every chart-height/weight ratios, intelligence, athleticism, and early childhood ‘smarts’. He taught himself to write at age 2, even before he could say the letters aloud. He can recite a book after hearing it only a few times. He knows all the words to every song I’ve sung him, including ones he hasn’t heard since he was an infant. When he smiles, his eyes sparkle, and the only sign of issue is in his teeth, where a virus attacked 8 of his tiny molars, requiring outpatient surgery at 15 months. He’s healthy. He’s strong, and he’s agile and he’s alert and happy every day. He’s awesome, and he’s healthy beyond my best dreams. But he’s not normal.

I’ll never get to choose whether to apply for the premiere private school or the Montessori, because neither has the facilities to accommodate him. It’s public school or nothing, since I can’t afford to home school him, and, anyway, it’s the social pieces of public school life that he needs most. I can only enroll him in swimming lessons or summer camps if I announce his condition ahead of time, and even then he won’t get to participate unless the host agrees to supply a ‘special needs’ aide for his individual attention and care. Yes, individual, because he won’t be allowed to participate fully, as all the ‘normal’ kids are permitted to do. I have to fight to look at the joys he has and the talents he brings-both of which are many. I’ll have to do that in the face of all the battles to come, where everyone, including me, will have to focus on what’s wrong with him, rather than what’s right.

I will figure this out, and I know that the journey and the outcome will be much brighter than I feel right now. In one way, I’m relieved and happy. I don’t have to wait any longer, and I don’t have to wonder if I’m crazy, because I seem to be the only one who thinks there's a problem. I’ll work it all out. I will, and this will, and he will. Struggle is nature’s way of building strength. Okay, then, strengthen me. Give me strength. Please, please, give me strength.

205.5 pounds this morning. Up a little, and caring not a bit. It’s not real, and it will go away. Time to focus on what’s important Right Now.