Sarah Palin as Veep (Rant/Long) →
[More:]As a parent with a child with Down syndrome, I'm very interested to see how this upcoming election will play out. Choosing Sarah Palin who has a four month old child with Down syndrome was probably a mistake, but not because of what you might think.
One of the first things to look for is how she is handling this. It might be the case that she is the most with-it person on the planet and having a child with Down syndrome is taken completely in stride. After all, she's had 10 months or so to come to terms with it (assuming that she had the early screening done – very likely at her age). More likely, she is still in mourning in some way or another, and believe you me, no matter how well you put on that public face, it still affects you deep down. It took me a good couple of years to come to terms with things and it's still challenging in year five.
The second thing is to see who is actually taking care of Trig, because that's going to be one of the most important full-time and then some jobs that her family will have. If you have a child with a severe disability, one of the programs available to you is called Early Intervention. This is a state-provided program that allots necessary care to the child and training to the parents. This is a program that is provided in the home and is built to give make the family and the EI staff a team to help the child develop for the first three years of its life. Why three years? Because some pencil pushers determined that three years investment up-front is long-term cost effective. Helping a child develop early is more likely to keep them out of institutional care as an adult. Aside from the cost-efficiency aspect, there is a prize that comes along: if you work really hard those first three years, you will more likely have a child who grows up to be a valuable, productive, self-sufficient adult. This is especially important if Sarah ends up in the White House because Trig will have spent nearly 2/3 of his EI time while his mom is effectively unavailable. During the campaign, will Sarah be also learning about how to develop gross motor skills, what cognitive milestones are most important to shoot for, how to develop speech and fine motor skills? I suspect not. Let me contrast – during my daughter's first three years, Mrs. Plinth or I or both attended most of the EI sessions because we had to learn what to look for. In exasperation, I complained to the physical therapist that I was tired of having to think so much about PT – couldn't I just play with my daughter? She gently reminded me that all play is physical therapy, but knowing how to direct it and what to look for makes all the difference. After a long day shaking hands and waving to crowds and repeating sound bites, do you really believe that Sarah Palin will be also taking the time to get trained in developing centerline play, preventing turn-out in Trig's hips, knowing how to train him to drink from a straw? I don't.
The more likely scenario is that the rest of the family will be taking up the slack and/or they will be hiring help to make that happen. If they hire help, remember whenever you see Trig that he is incredibly lucky to have a family with resources to hire out the help, because most families sure as heck don't.
Another thing to look for is to see how often Trig gets used for political gain and how often the campaign hides behind him as well. For example, Trig can be used to push a pro-life stance, but be prepared for accusations of hating all kids with disabilities if the opposition disagrees. I'm not saying it will happen – I'd be pleased if something like that never happened because this campaign could be one of the best things that happened to Down syndrome awareness since some brainiacs in the 1970's re-discovered what Langdon Down knew a century before: people with Down syndrome thrive when they are cared for and suffer when they are institutionalized. I, however, am cynical and fully expect the special needs card to be hypocritically played. Traditionally, most candidates and elected officials tell the press to leave their kids out of the morass. I don't expect as much, but you never know. Prove me wrong.
Finally, keep your eye on language. This is something that bugs me nearly as much as the misspelling of millennium or the swapping of loose and lose: it's “Down syndrome” - capital D, lowercase s, no possessive (ie, not Down's Syndrome). Also, be aware of phrasing along the lines of Down's kids or Down's babies. This is considered insulting. Would you call the kid down the block a “broken arm kid”? No – of course not, you'd refer to him by name or as “the kid with the broken arm.” This type of phrasing is called “person first” phrasing and is the preferred way to refer to people with disabilities. The notion is that by putting the person first and the disability second, you are stressing the person and not the disability. Oh, and if you really want to sound hip, call it Trisomy 21 or T21, which is a more accurate description of the condition – Langdon Down (who was a pretty astounding guy, by the way), didn't have the tools to attach a genetic label to the condition.
I don't claim to speak for anyone else in the community – this is clearly my own bias, so apply your own grain of salt.