It’s a Girl

Delphine has always been a mellow, easygoing tot. She likes to observe people; she likes to sit and play with her board books, turning the pages; she likes to caress and chew her toys. She’s never been one of those frenetic tots, flailing their legs and arms incessantly from day one, crawling onto and over and under everything. She’s not a screamer, nor is she particularly shy. And she loves to sleep.

But by the time Delphine was closing in on her first birthday, we were starting to worry that the mellowness was masking slowness. She learned to roll over around eight months of age, and promptly used this skill to escape tummy time permanently. Crawling? Not gonna happen when your kid can easily flip from her tum onto her back and lie there, playing contentedly with a toy. Walking? Not gonna happen when your kid can’t get into a sitting position from a lying one, and doesn’t even seem interested in trying.

We reported these obvious delays — along with a slew of other oddities, such as no finger-pointing or goodbye-waving, no clear first words beyond general babble, and no real skill chewing her food or drinking from a cup — to our beloved family-care doc at Delphine’s 12-months checkup. She agreed that it sounded like D. was pretty behind, and said she’d refer us out to a pediatric developmental and rehabilitation center for further evaluations.

That was more than two months ago. What sounded like a simple directive — go to this pediatric center, get some help — has turned into hell. If we had known we’d need a translator, a guide, and a map, we’d have gone shopping for a Virgil first.

We should’ve gotten suspicious that the child-developmental world was a morass a few years ago, when the bright, personable daughter of some friends developed mysterious problems. The parents belonged to an HMO, which refused to run tests or refer the child out to specialists. It took the family more than a year — and a switch to an entirely different health-insurance setup — to figure out what was wrong and what to do about it.

But we didn’t heed the warning. No, we blithely started with that initial referral to the pediatric center. All our phone conversations there, however, went something like this:

“Hi, my daughter needs to have a vision evaluation. Do you do vision evaluations?”

“We do therapy for that.”

“That’s great, but do you do the initial evaluation?”

“No, but we can help with it.”

“Do you refer patients out to specialists for the evaluation?”

“No, but we do the therapy.”

You get the idea — ships in the night, scratching hulls.

So we switched our doctor’s referral over to a different pediatric rehab center. This time, we were given an appointment with a pediatric-development specialist and told that, when we met with her — some six weeks from the day we were making the appointment — she would evaluate our daughter and then refer her out to other specialists.

When we finally met with this doctor, she ran a few tests and agreed that Delphine did need to see several other specialists. But, since she was a new doc in town, she didn’t know any to recommend. We’d have to ask our regular doctor about that — the doctor who, of course, referred us to this pediatric-development specialist in the belief that she would know who to refer us to.

In the meantime, this new-in-town doc added, we should come back in another month to have Delphine evaluated for physical therapy.

By now, of course, my mother the drill sergeant had marshaled her forces, flipping through her digital Rolodex and contacting everyone she’d ever known who worked in pediatrics, occupational therapy, children’s social services, and the like.

All kinds of recommendations came rolling in, none of which our medical providers had ever mentioned: having Delphine evaluated by the county to see if she would be eligible for public services, having Delphine evaluated by a private nonprofit specializing in therapies for disabled children, and offering names of pediatric specialists around town who might be able to help Delphine with her various delays.

No single person seemed to be an expert in all the options. And no one seemed to remember that we were laypeople, who didn’t know what “hypotonic” meant or any of the other technical terms slinging past our heads.

Everyone — the doctors, the nurses, the evaluators from the county — put Delphine through her (admittedly slow) paces, checked off boxes, nodded solemnly, and informed us, over and over, that our child had already flunked out of life.

Which may be why nobody seems especially eager to provide therapy for Delphine. If your child, at 15 months, is already so far behind that she needs therapy, then, gosh, why bother rushing to her aid?

Well, because small children change incredibly quickly, and the sooner a young child gets therapy, the better. All the pregnancy and new-baby books hammer home this message: If your children don’t develop properly in their first few years, they’re basically screwed.

But what seems obvious to us is clear as mud to all the supposed experts we’ve seen lately.

At the earliest, Delphine might start to receive physical therapy in mid-July. If the specialists don’t cancel on us, she might get some more extensive evaluations done in mid-August.

At this rate, we’ll be lucky if she’s walking by age two.

Time for Delphine’s parents has also stretched out, as if we were all living on the edge of a black hole. Making a single appointment can take an entire hour on the phone, waiting on hold and getting shunted around to find the right scheduler. Questions get more and more bizarrely antiquated; today I was asked both to give my maiden name (as the answer to a medical-records security question) and whether (because my last name doesn’t match Delphine’s) I had custody of my own child.

One doctor casually ordered a blood test for Delphine, to check her lead levels. Well, you try finding a vein on a plump, squirming baby. Five hours, three nurse practitioners, and three phlebotomists later, Delphine hadn’t given up a drop of blood. The last phlebotomist actually tried to find a vein by sticking the needle into Delphine’s ankle and digging it around in a circle, hoping to strike gold. I gritted my teeth and let Delphine scream for about 15 seconds before saying, “That’s enough. We’re done here.”

Fortunately, we have playgroup. We hadn’t been in a few weeks, because first Delphine and then I got sick with a nasty respiratory infection. And then Delphine flunked all her tests. So I was sort of dreading going, plopping my child down among all the other one-year-olds who are walking and talking and signing and stealing toys and aggressively chewing all kinds of choking hazards. Would the other parents start to feel virtuous for tolerating Delphine, now the token special-needs child? And would they secretly feel relieved that, thank God, their children were normal?

But they weren’t. They know us; we’ve been seeing them nearly every week since last summer. Delphine is still the same cute, sweet kiddo she’s always been. Delays or not, that’s what we know and love.