The Neediness of Special Needs Kids

Blue Gal has come right out and said, "Sarah Palin is a bad mother." Her main point is that a child with special needs can't just dispense with hands-on parental care:

As the mother of a special needs kid, I can tell you that at the time of his diagnosis I would have cut off my own limb before taking ANY job that took me away from his care.

I was lucky at that time that I did not need to work. I feel horrible for parents who must work outside the home to pay for the care of a special needs child.

But Christ, she's got a Down's Syndrome baby. She has no idea if the baby has any Mental Retardation issues at this point. Special needs babies are ALL CONSUMING and SHOULD BE. It's like the only issue she had was making political points from not aborting. And then it's right back to work? Not even the standard six weeks maternity leave? Are you kidding me? To hell with her.

(Read the rest here.)

Now, whether you consider this relevant to Palin's fitness for office is your call. I'm disinclined to disqualify a candidate on this basis. Plenty of solid public servants have been crappy parents and spouses.

Palin herself seems to differ. Her speech Wednesday night put her family members front and center. In fact, that's the only positive I remember (along with her invocation of McCain's POWness) in her stew of snark and sarcasm. But since she considers motherhood one of her qualifications to be VP - perhaps the main qualification - I'm not going to tell you not to judge her on that.

Instead, I'd like to back away from electoral politics for a moment and discuss the nitty gritty of parenting a child with special needs. In the past few days, I've heard it repeated over and over that Palin's child will automatically get the best possible care due to her privileged status, and thus it doesn't matter if she and her husband delegate Trig's care to others. This is a pernicious lie.

I have a little experience with a developmental delay - and I mean a true delay, not a permanent disability. My younger son, the Tiger, had a significant speech delay. He's doing great now. Between the ages of two and three, we went to speech therapy for an hour each week. For part of that time, we also had weekly home visits from an Early Intervention specialist.

I suppose a nanny could have kept the Tiger company at all those appointments. But would a nanny have stepped in when a young speech therapist used techniques that were obviously doomed? For instance, she tried to elicit words by withholding toys from the Tiger. This was a huge success - in pissing him off. I knew how stubborn I was. I knew she was only setting everyone up for failure. So I gently but firmly insisted she try to harness his natural goofiness and sense of humor instead. This not only kept the weekly sessions from becoming a nightmare of tears and refusal, it also worked way better.

The Early Intervention specialists had better instincts. However, if I hadn't pressed for an evaluation sooner rather than later, the bureaucratic wheels turn so slowly in this county that he would have turned three - and aged out of eligibility - before services even began. I think this is a reflection of the lack of funding for such services, locally; social workers are stretched thin, and this becomes a form of de facto rationing.

Maybe a nanny would have been just as assertive. More likely, though, she would not have known my child in the same depth as I did. She would not have felt as deep an investment. She might have felt that negotiating with the professionals and insisting on a partnership with them was above her pay grade.

What I also learned is yes, you need the professionals, but you also need the whole family to be on board with teaching speech at home. I scoured the Web for helpful advice and we all became better communicators. Instead of speaking in full paragraphs with tons of subordinate clauses like I do here at Kittywampus - hey, it worked fine with my first kid! - I learned we needed to start with individual words and work our way up, matching the Tiger at the level he was at. This led to scintillating exchanges where he would say "car" and I would go "red car" and words like "scintillating" were banned altogether. But it paid off big time. Today, you'd notice some quirks in the Tiger's usage (and that would be worth a whole 'nother post) but you'd never call him disabled.

So my experience was really with "developmental delay lite," and yet it was tremendously helpful that I was only working part time. I'm not arguing that one parent must therefore stay at home, only that if both parents' jobs are all-consuming, a special needs child will pay the price. I'm also not assuming that the mother has to take the lead. The crucial thing is that both parents are connected and tuned in to their child's unique needs and strengths, and that at least one of them has adequate time and energy to devote to that child's extra needs for nurturance. (For a perspective on how much harder this quest is when a child has Down syndrome, see this post by Mother Who Thinks in Salon's comment section.)

No one except the parents will know that child's temperament, personality, and needs inside and out. No one else will love that child as deeply. No one else will be as fierce an advocate. That is what you can't outsource, no matter how wealthy you are.

And now I'm off to see the Tiger play the Gingerbread Man in his kindergarten play. (He's one of several G-Men.) I'm already teary-eyed at the thought of it.

Update 9/5/08: Since I dashed off to school before I had a chance to re-read this post, I realize I should come back to the Palins. I want to emphasize that I don't think mothers have a unique responsibility to their kids apart from the gestating and breastfeeding. Todd Palin could absolutely step up and be his baby son's number one advocate - as long as that doesn't contradict the religious-wingnut ideology of male headship of the family. So far, I've mostly seen Trig in Bristol's arms, and his long-term welfare is seriously not her job.

Since I bumbled that one, here's a photo that shows why I was in such a hurry to get to the play. This was the Tiger's costume. Please note the green face on the Gingerbread Man; the Tiger is not into realism. The kid attached to it was equally funny.

The Melody of Language

I've been interested in language acquisition ever since my first baby started to talk. In keeping with the theme of this blog, one of his very first words was "mau," referring to Grey Kitty. In fact, "mau" predated "mama." I didn't care bit. I thought watching him learn language was one of the coolest parts of parenthood.

That changed with my second son. I was just as excited about him learning to talk - but it didn't happen for a very long time. Worry displaced joy. At age two, when most kids are combining three words into crude sentences, the Tiger had just a handful of words. He didn't even say "no." Now, three years later, he's mostly caught up, following a little speech therapy, a lot of terrific help from a support group online, and the simple passage of time. And believe me - he has learned to say no!

So I was fascinated when Dave Munger at Cognitive Daily (Science Blogs) reported recently that music apparently helps in language learning. A research team headed by Daniele Schön had students learn a set of six nonsense words; it took them 20 minutes to learn where one word ended and the next began. Schön's team then mapped each of the six words onto a unique pitch. They found that the musical association dramatically increased learning. (Their abstract is here; since the full text of their article is not accessible on the Web, the following graphs are courtesy of Dave Munger's post.) The graphs show the test subjects' accuracy after seven minutes of hearing the nonsense words paired with a unique musical note:

Munger observes:

The dotted line in each graph represents the average score for all listeners, and each square is the average score for an individual listener. As you can see, in the speech-only experiment, listeners did no better than chance. But in the second experiment, nearly everyone did better than chance, and the average score was 64 percent correct -- significantly better than chance performance. Simply associating each syllable with a musical note improved performance.

But in real songs, syllables aren't always matched with the same notes. Sometimes different syllables get the same note, and sometimes the same syllable is sung with a different note. In a third experiment, Schön's team allowed the notes to vary with each syllable. Again, listeners could identify words at a rate better than chance (though they weren't as good as in the second experiment).

Schön and her colleagues don't go so far as to argue that music is a requirement for learning language, but they do make the case that the extra information provided in music can facilitate language learning. They also suggest that other information, like gestures, might be equally helpful for learning a language.

But there is additional evidence suggesting that music plays an important role in language. Similar areas of the brain are activated when listening to or playing music and speaking or processing language. Language and music are both associated with emotions. And of course, we know that children -- especially small children -- really like music. This study offers another bit of evidence that the link between language and music may be a fundamental one.

The cool thing about this, from my totally anecdotal persepctive, is that I saw exactly this in the Tiger's language development. (I should be embarrassed that every time I cite something from Science Blogs, I end up sullying it with non-scientific thinking. I guess I'm not embarrassed enough to desist.)

The first time I heard my Tiger utter multiple words, he was singing "Ring around the Rosie." He'd hum the first part, then repeat the last line over and over:

Ash-ah! Ash-ah! Da da dow!!

Granted, that's the sort of phrase that only a parent can appreciate - especially when it's on endless repeat. But the cool thing is that the tune helped him put the syllables together when he couldn't otherwise get beyond single-syllable utterances. He was maybe two-and-a-half at the time. Equally great, I was able to understand him, thanks to the melody. (He has a great natural ear for music, and that was apparent long before he was talking.)

All fired up, I took this information to our speech therapists. Oddly, frustratingly, they didn't know what to do with it. Now, it seems to me that Schön's research suggests fruitful new approaches. Though I'm no longer in the trenches with late-talking, and I'm not a scientific expert by any means, I am a tuned-in mother who learned a lot about how to encourage language. And I'm guessing that late talkers could really benefit from the therapist using more music - not just prerecorded songs, but melodies sung aloud to help kids acquire new vocabulary.

The photo shows my piano; that's me making noise at it.