My friend Holly, parent of a legally blind child and president of Parents of Blind Children-NJ, alerted me to this very cool piece of news today: Fox and Crow Are Not Friends was the August selection for the Free Braille Books program sponsored by the American Action Fund for Blind Children and Adults.
In 1997 the AAF started this program to provide blind children a free Braille book every month from a popular children’s reading series. The books are for the children to keep and collect for as long as they want them. The titles published every month are the same titles that are available in bookstores and public libraries everywhere. In the past ten years over one hundred seventy titles from popular children’s reading series were distributed to thousands of blind children.
You may remember Holly and her son Hank from my GeekMom piece on their fight for Hank to receive Braille instruction in school.
I’m proud of my piece at GeekMom today: An interview with my friend Holly Miller, who battled her school district for three years to get necessary Braille instruction for her son, Hank. Hank, like my own Wonderboy, has oculocutaneous albinism—in Hank’s case, the effects on his vision are severe. He is legally blind. But the school district considers him a sighted reader and opposed teaching him Braille. Holly and her husband Jeff took the case to court—and won. I hope you’ll click through and read the article!
In a Digital Age, Braille Is Still Important | GeekMom | Wired.com.
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?