The number of ways having a developmentally atypical child is isolating for me, well, the number is too high. I find it extremely painful to be with people, with my child or without, and I find it just as painful to be alone. Grief is something that cannot truly be shared.
Of course, my child is mostly fine. My child is so mostly fine that often, she can pass for completely fine. But she is not fine and I am not fine. We are not fine.
Secret Lulu has a language delay, or maybe disorder, or maybe a more pervasive issue with processing. To say that, clinically, she is two standard deviations behind her age, which is roughly a little over a year, is to say that purple is not blue. Maybe it is a place to begin but it barely describes all that is and is not happening with language at our house.
Secret Lulu does not fit any category, she does not bend to any differential diagnosis. She could be autistic spectrum disordered, only the ways that she is not autistic are too numerous to count. Still, the books on autism, as they relate to language, are the only resources I have found even remotely helpful in understanding the verbal conundrum that is Lulu. She could have a central auditory processing disorder--a kind of dyslexia of hearing--that diagnosis almost fits if you squint and look a little sideways, but it is not something that can be tested for until age six, and again, the number of ways it doesn't fit are many.
Trying to explain Secret Lulu's language is a lot like trying to explain a roller coaster to someone who has never seen nor heard of motorized transportation. I can try but people almost never get it. It's subtle, and it's not. Secret Lulu has learned to speak by scripting and chunking, which is to say mitigated echolalia, which is to say how the bad guys piece together one side of a telephone conversation from the recording of someone's voice on a low-budget television drama.
That's some of it.
She often reverses pronouns, or echoes back part of a question to form her answer, or repeats my question entirely if she has no idea what I am talking about. She cannot handle most abstract questions, only those with a concrete meaning and answer; it's best if the answer is provided as part of the question. Still, she wants to be able to communicate more, wants to be able to address past and future, and she'll work to get there. For instance, if someone cried at school she might ask me "did Ben cry at school? YES" because she doesn't have another way.
For me, not Lulu, being around typically developing children is horrible. Being around atypically developing children isn't much better. Either scenario only casts a glaring spotlight on all of my fears, worries, concerns, and sadness. It's easier to be alone and pretend that how we are is the only way there is to be.
Other adults usually fall into three categories, none of them helpful. First are those who deny that there is anything to be concerned about at all, as though really it's all in my head. Second are those who believe that all that is needed is a little more effort on my part, better parenting, a more stern approach; maybe I should just try smacking her (this advice has literally been given). And in keeping of the tradition of countdowns everywhere, the worst is last: people who make it seem even worse than it is by telling me horror stories of brain damage and deviant behavior and bandying about the word special.
The people who have used the word special in connection with Secret Lulu don't know how close they have come to being physically assaulted. And perhaps spit on.
Mostly, people don't get it. They don't get the challenges or the effort or the benefits. Because indeed, there are a few benefits. They don't get it. They offer advice on potty training and discipline like they have even the hint of a clue. They are trying to be helpful, but instead what they are is one more thing to be tolerated and endured. As if having read fifteen books on potty training and lived with Secret Lulu, I could possibly know less than them about what's going on at my house. Sure.
Let's add being gracious in the face of idiocy to the list of things I have to do today.
Parenting at it's easiest is quite possibly the most exhausting and relentless job on the planet. No matter how I do it, there will be plenty of people convinced I ain't doing it right, myself included. But because my child doesn't fit the mold, yet my kid seems by and large normal, I get even more flack. Because, hey, my kid should be old enough to understand by now.
There's a landslide of difference between should and is. There's an avalanche of difference between typical and atypical. There are no answers, no explanations. There is no parenting handbook for the atypically atypical.
There is only love, patience, and compassion. There is only ignoring everyone else and steadfastly moving forward the best way I know how. There are no experts with cures or easy answers, believe me I would have found them by now. There is no roadmap of expected development and progress. There is only what we could do before versus what we can do now and what we hope to be able to do sometime in the near future.
As Secret Lulu gets older, as learning becomes more dependent on language at a rate that far outpaces our ability to acquire language, my anxiety becomes even more pervasive. Our difference become more obvious, and yet still so subtle.
Chinese-water-torture subtle.
I cannot really explain it to people. There is no way to explain the difference between a single drop, one hundred, and one million. Each drop is just a drop, the progression is subtle, and yet I am certain that there is a difference in the experience of the first and the last.
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