This month, author Susan Taylor Brown is the host, and in honor of Father’s Day, she has put together a carnival of posts about fathers in literature. Check it out!
UPDATE: The court heard arguments all day and now the ball’s in their hands. They have up to 90 days to make a ruling, but I doubt it will take that long. I read a good summary of the oral arguments that were presented and will post a link when I find one. (The summary came via email.) Sounds like there were no surprises.
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When I mentioned yesterday how many specialists my son sees at the children’s hospital, commenter Anna marveled,
Melissa, ELEVEN specialists? Next time I grouse about two specialists, I’ll shut up. 😉
Oh no, please don’t shut up. Grouse along with me! Medical appointments expand to fill the space around them, don’t they, so that I’m guessing your two specialists suck up massive amounts of time just like our eleven.
Eleven is only the number of departments Wonderboy visits at the Children’s Hospital. Then there’s his pediatric ophthamologist at the university hospital, and the speech therapist and audiologist in the school district. Oh, and also the regular pediatrician, his primary care doctor. If you add in his dentist, and since the child managed to knock out four of his teeth in the past year, I think we may certainly add the pediatric dentist to the roster, that’s (gulp) 16 doctors and therapists my little guy sees on a regular or semi-regular basis.
Yes, it’s a little nuts.
One of the hardest parts of juggling this caseload is keeping all these folks on the same page: namely, the page that is all about the whole picture of this kid, not the tiny piece Dr. Specialist is focusing on. I often compare my role as having to hold tight to the leashes of a bunch of big dogs all pulling in opposite directions. And sometimes it seems like the doctors communicate with each other about as well as dogs do.
In Virginia, we had some personal connections with a few doctors in a way that meant I had another set of hands helping me hold on to the leashes. You may remember how I pined for our Dr. Lily when we left, wished I could bring her with me. (She actually did offer to fly out to California with me and the children when she heard I was going to drive them out here all by myself. Now that’s dedication. But I was more afraid of five hours on an airplane with Wonderboy than two weeks in the minivan, even sans other adults.)
Here in San Diego, we have excellent doctors, absolutely. But none who have taken that step past the detached professional relationship toward a more familiar, I’m-your-ally-let-me- help-you-with-those-Huskies rapport. I’ve had to come up with some strategies for making sure all the boy’s doctors take the time to at least glimpse at the whole picture of him, not just their individual pieces of the puzzle.
The biggest help has been the Doctor Roster. I typed up a list of all the people Wonderboy sees. Four columns. First column: doctor’s name and phone number. Second column: doctor’s specialty or department. Third column: date of most recent appointment. Fourth column: Notes on the last appt, tests ordered, recommendations made, etc.
I’m saying doctor, but this also includes his PT, speech therapist, etc. Everyone involved in his treatment.
I carry several of these lists with me to every appointment. It’s the first thing I hand a doctor when he or she walks into the room. Always, the eyebrows go up: the complexity of the big picture is immediately apparent from the length of the list.
I’ve begun to notice some major improvements in communication between departments since I began handing out this list, and I have definitely found that the individual specialists spend more time asking me questions about his history and his overall treatment plan.
Of course, if only the kid had one global diagnosis, that would help so much! One peg for the docs to hang their hats on; one road map to follow. But that, we know by now, isn’t likely to happen. There is no syndrome that fits, no other case in history that contains this specific bizarre amalgam of issues. Someday, some savvy doctor is going to write a paper on the kid and there’ll maybe be a new syndrome in the books. It’ll be named after the doc, but we’ll know it’s Wonderboy Syndrome, won’t we?
In March I reported the distressing news that the NY State Board of Regents had announced public special-education services such as speech therapy and occupational therapy would no longer be available to homeschooled students. Private school students, they ruled, would continue to qualify, but not homeschoolers.
Well, it looks like common sense has prevailed. Today the New York State Senate passed a bill reinstating these services to homeschooled children. The Assembly passed the companion bill on Monday. Now all that remains is the governor’s signature.
This is great news. These are public services available through the public schools which ought to be available to all children, not just those enrolled in the schools. Working with the school district to receive these services is not always an easy task, but for some families, for some children, it’s a vitally important option.
I wrote a fair amount at The Lilting House about my family’s (sometimes rocky) experiences with receiving speech therapy and audiology services from our school district for our hard-of-hearing son. I had to learn a lot about navigating the IEP process, and some of the lessons came at a price. (You may recall the one IEP meeting where I was sandbagged by “the team” and had to fight hard to persuade them to agree to what I knew to be the best course of action for my son.) This past year we’ve been very pleased with the way things have worked, and I couldn’t be happier with our current speech therapist and the district’s awesome audiologist.
And not having to drive up to the children’s hospital for these services (where Wonderboy already sees eleven different specialists on a regular basis, and NEVER on the same day) has made a huge practical difference in my family’s quality of life. I run him over to a local elementary school for speech therapy, hearing tests, new ear molds, and such. All these services and supplies (including hearing aid batteries, which aren’t cheap) are provided free of charge by the school district—just as they are, here in California, for every child in the district, whether public-schooled, private-schooled, or homeschooled. Our tax dollars are helping fund these programs.
One of the potential pitfalls we’ve skirted is that once your kid is in, it can be hard to get him out if you decide the services in question are not a good fit, after all. Here in CA, Wonderboy is stuck in the system until he reaches legal kindergarten age. He misses the cutoff for next fall by one week, and ordinarily I’d have been delighted about that: no need to fool with paperwork for him for an extra year. (Not that there’s much paperwork to fool with, here in sunny Cal.) But if I wanted to back out of district-provided services and seek them through the medical venue instead, I’d have a devilish time doing so until he reaches kindy age. At that point, I can simply “enroll” him in our family’s private school (since that’s the option I homeschool under, the private-school provision) and decline any or all district services I might wish to disengage from.
We’re quite satisfied with our current level and quality of service, and I’m content to maintain the status quo next year. But the libertarian in me (Scott says he notices an increasingly large streak, year after year) bristles at being bound to any status quo where my own child is concerned.
But I bristle even more at the notion of services being denied to some children for arbitary or prejudiced reasons, which seemed for a while to be the direction NY was headed. Bravo to the legislature for letting justice prevail. Now sign that baby, Governor.