Friday, September 5, 2008

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.


Laura said...

Nice save. And LOL of course you are redeemed by the costume.

A couple of thoughts:

1) Inner Linda Hirshman chiming in - I value motherhood and the role of the SAHM. If given the choice between going back to work as, say, an accountant or a lawyer, staying at home to raise the children is a defensible and honorable choice. But the Palin facts really push the envelope, don't they? You're given the choice of: (1) being the first in history to represent your gender in the white house, one heartbeat away from presidency; or (2) raising your children, including a special needs child. If there were ever a situation where there is an affirmative duty to work, this must be it. So yeah, I think the choice is not only defensible on "good parenting" grounds (because of Todd's involvement), but beyond that, I think she's obligated to answer her calling.

2) On the issue of "outsourcing" - sorry but I cringe at the term in reference to a nanny's role. (Cue the chorus of: this is a bullshit counterargument only an elitist would raise.) I have a nanny and I'll tell you what I tell each and every one of Brad's therapists: I regard her as an extended member of the family, and you are to regard her as me by proxy. My nanny loves my children. And she has a college degree and is working on her masters in psychology. "Outsourcing" connotes an exchange of money for services rendered. This doesn't capture the complicated nanny relationship. I could go on and on about how we work together, as partners, in overseeing services, but I won't because it's mundane and really has no application to Palin, since I only work Mon-Thurs, and am able to come home during the work day to meet with people, as needed. And of course, my situation and my nanny may or may not be representative of most. My point is that, like so many things: it's not black and white.

Sungold said...

I totally get why Palin would say yes. It's a historic opportunity, as you say, and I can't imagine going down in the annals of time as the woman who turned it down.

Heck, I would probably say yes - and frankly either you or I would probably be as capable of governing. (I wouldn't fill the attack dog role well at all, though! I'd want to talk about things reasonably and concede where my opponent was honorable or right! Oh wait, that's the Demcratic strategy ...)

If Todd is involved, then sure, I agree that there's a way to do it while being "good parents." So far, we've seen lots of public evidence of *Bristol's* involvement. She holds that baby like she means it - seems very comfortable in that role. But she's going to be very busy, very soon. Is Todd going to pick up the slack? That remains to be seen. The scuttlebutt I've read is that he is not very present; he's off at the oil fields for a week at a time (I think the rhythm is one week on, one week off) and then off fishing for long stretches in summer. This, too, will obviously have to change if they move to Washington. So far, though, he's definitely no stay-at-home-dad. And his work is particularly hard to combine with *consistent* hands-on parenting.

As to outsourcing: What I mean by that is not simply having a nanny or daycare provider. We've had part-time versions of both, and (like you) were lucky. Our long-term daycare provider was head of Radio Bosnia before the war - she's smart in every way, loving, and just a gem of a person. To the extent I've gleaned any wisdom about parenting, most of it has come from her.

So I'm not *at all* inveighing against nannies or daycare or any other arrangement of shared childcare. I actually think most of us are better parents when we have help with the burdens.

By outsourcing, I really mean turning it *all* over to someone else - there are families with two high-powered parents whether neither one sees much of the kids. That is rarely the case in real life. However, the *media* discussion has often suggested that the Palins or other highly privileged parents can simply throw money at meeting their child's (special) needs, and you and I both know that it's not that simple.

Blue Gal said...

Thanks for the link and the thoughtful response.

Sungold said...

You're more than welcome, Blue Gal; reading your post was cathartic for me. I'm always reluctant to call someone a "bad mother" - that is such a cudgel used against women - and yet, I do think there's such a thing as bad parenting. If Palin weren't protected by white privilege and class privilege - along with this force field that seems to shield prominent Republicans from their own hypocrisy - I'm sure *plenty* of people would call her a bad mother.

So thanks for being blunt and making me think about this.

ThePoliticalCat said...

Nice post. I do want to say that I had a sister with a severe illness, and Down's, although it's not an automatic sentence, can involve physical as well as mental problems. That said, my mother turned down lots and lots of good offers, and my father quit his job rather than transfer out of the country because of my sister.

I'm not going to cudgel Palin with the "bad mother" s(ch?)tick. But I'm surprised that the job opportunity seems more important to her than the health of the child she chose to have. Down's is not a simple developmental delay that can be dealt with by community and professional resources. Depending on the degree of disability, the child could have heart problems, a shortened lifespan is definitely in the cards, and the degree of protection and care this child needs — let's just say his mother's deep cuts in funding for special needs children does not bode well for little Trig.

Sungold said...

Thanks for stopping by, TPC. I can imagine that your sister's illness was not easy for *any* of you. Including you as her sibling.

I'm stopping short of the "bad mother" label, too - although I'll admit to vicarious enjoyment of Blue Gal's more direct approach. :-) I *do* think we can tar Sarah Palin as someone who's got a macho attitude of trying to prove she's tougher than the guys - and thus has made some rash decisions. To my mind, her alleged attempt to censor Wasilla's public library collection shows the same tendencies to act tough, think later.

I'm aware of the cardiac issues because my dad's second wife's sister had Down syndrome. She lived well into her 50s, which was the result of good care. She lived with her parents and then stayed in some sort of a group home. She had a pretty good life. But her older sister (my dad's wife) feels that she too sacrificed a lot.

As for the funding issue - I keep reading conflicting things. It looks as though the budget was restructured, and so maybe Palin didn't actually make the deep cuts that have been alleged, but I honestly don't feel I can judge without putting more effort into it.