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.