My beautiful and amazing son, DarMar, was born in October 2009 at 35 weeks, 5 pounds, 9 ounces. He was in the NICU for two weeks. He was never in an incubator; the problem was that he wouldn’t take a bottle. Hippie-organic-homebirth parents step back: when a kid is born that early (yes, even though it’s not that early) the hospital makes them learn to use a bottle. My wife breast-fed all she could, but doctors insisted on some of her milk in bottles to give to the baby. Only after two weeks did Dar realize how to drink from a bottle. Only after two years did I realize that this episode would be symbolic of his larger life. Silly rabbit.
At a poker game a few months after DarMar’s birth, an old friend of mine said, “So, how’s daddyhood?” I said, very sincerely, “I love it.” He’s also a father, and he said, “Yeah, man. It just gets better.” I believed him then. Sillier rabbit.
When Dar was about six months old, we noticed that he seemed to have trouble sitting up. He wasn’t a great crawler either. And we noticed that he seemed to favor his right side. We mentioned this to his pediatrician, who suggested a specialist, who told us to wait-and-see. At this point, I felt like all the helicopter parents that I’ve been silently criticizing for years. You don’t need to call 911 every time little Timmy has a splinter in his finger. So we waited-and-saw.
Imagine a scale where 1 is a shoulder-shrug and 10 is a dingo ate your baby. When the kid is your first and only kid, as he was to me and his mother, every little thing feels like about a 9. Unlike almost every man I know or have heard of, I’ve read three baby books cover-to-cover, and browsed others. As you lazy men are hoping to hear, yes, most of that content is inapplicable when your little one is suffering something beyond a cold. And yes, DarMar was suffering, at first from imbalance, and then from problems stemming from that. By ten months, he was nowhere near pulling himself up on furniture the way many kids do. I would still have wagered that he was just a late bloomer. Lesson learned: do NOT take my advice on sports betting.
Just before his first birthday, a neurologist told us he had cerebral palsy.
The neurologist hedged a little, saying something about how they don’t really diagnose CP before a child’s third birthday or so. The phrase is, “he exhibits signs that are consistent with” CP. This is enough to qualify for state aid. It was also enough for me to explain to friends why he never used his left side.
I’d say something like: “He’s been diagnosed with cerebral palsy.”
Example of friend: “Oh, wow. … What is that?”
Me: “It’s sort of like he had a stroke, in the womb. You know any stroke victims?”
“So you know how one side just won’t do what the other side does?”
“Is there a cure?”
“Nope. He’ll have it for the rest of his life. He’ll just learn to manage it.”
People would sometimes say that his case isn’t so bad because everyone favors a side. A thing that most parents never (need to) hear from their pediatrician is that healthy babies don’t favor a side until about age two. Going forward, there’s actually a danger in false complacency. The easiest thing for his mother and me would be just to teach him how to do everything with his right hand. However, the risk is that his left side could become useless in a situation where he might need it. Where’s Ned Flanders’ Leftorium when I need it?
That day that the neurologist first apprised us of his cerebral palsy, a childhood friend of mine who is now a medical doctor said, “The state! The state!” He wasn’t trying to imitate Tattoo from Fantasy Island; he was saying that now my wife and I needed to push for state-sponsored services. Then, that didn’t seem like such a thing. Little did I know then how much of my life this would consume.
We jumped on it with the same vigor with which you’d dump water on a small fire. We checked every reputable site, we read lots of books. After an Olympics of bureaucratic rigmarole that I won’t elaborate on right now, we got Dar enrolled for help with state-sponsored physical-therapy. Though the center was in a scary part of Oakland, I secretly enjoyed going there because most of the kids there seemed far worse off than Dar – I mean seriously wheelchair-bound.
Then I felt guilty about feeling that, and wondered if my terrible thoughts had cursed DarMar into not walking.
Then, at the age of 17 months, he took his first steps. I’ll never forget the moment that he was crouched on all fours on this leaf-strewn path in Codornices Park…when he planted his feet and stretched his arms out and stood up for the first time. It was like watching a bird extend itself out of an egg. The egg hatched and a Gibraltar-size rock flew off of my shoulders.
For the next few months, DarMar’s CP didn’t bother me all that much. Like many people, I thought that perhaps doctors over-diagnose such conditions just to get people to qualify for help. The friends we trusted would say, not unkindly, “oh, it must be a mild case.” Frankly, I agreed. Despite being from the Bay Area, my first instinct was not to play the victim card. I don’t even know if I have the right deck.
What I’m saying is that we tried to take it in stride. My wife said to me several times that she was never all that physically athletic as a child, and that it didn’t matter to her if Dar ever was. “All that matters,” she would say, “is that he’s smart. Smart and happy.”
Little did wifey know that God was listening. And S/He wasn’t done with us yet.
I could see DarMar wasn’t doing things. Everyone talked about “his own pace” and “when he feels ready,” while I knew something was wrong. I had to worry if we were losing precious time. I asked the therapists at CCS if such-and-such or this-and-that was normal. His pediatrician said he really doubted that Dar was autistic. I’ll never forget the definitive words of one medical professional (I won’t put her name here): “Daniel, he does not have autism.”
I made a list. I brought it to his pediatrician, then to the child development specialist he sent me to, then to a doctor in Walnut Creek that she sent me to. To this day I’m sure the list made a difference. I would show it to a professional and they would say “uh-huh, uh-huh, uh-huh.” They would never say “Jesus Mother Mary of Christ our Lord Cthulhu.” But I read it in their subtleties, I read it in their subtitles.
The list, then:
20 THINGS THAT DAR NEVER DOES (AND ALMOST NEVER HAS):
4. Indicating in any way
5. Responding (including to his name)
6. Demonstrating receptive language (e.g. “where is…?”)
7. Communicating needs (with grunts/yelps/gestures)
8. Looking at things we point at
9. Handing us things
10. Bringing us things (from across the room)
11. Doing tasks on command (e.g. “get this,” “come here”)
13. Reacting to loud danger sounds
14. Socializing, noticing kids his age
15. Eating (almost anything)
16. Dancing, or moving with rhythm, or preferring any kind of music
18. Riding a scooter (where he’d sit and push with legs)
19. Pushing around (baby) stroller or wheeled things
20. Holding up a bottle or sippy cup
Around his second birthday, the Walnut Creek doctor spent about three hours with him; at the end of it, she diagnosed Dar with autism.