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.
We have two ripe strawberries on our potted strawberry plant. It’s November. San Diego is a strange place to live after you’ve put in a couple of decades on the East Coast.
Wonderboy had an OT evaluation at the Children’s Hospital last month. I finally got the written report yesterday. It’s full of errors! I’ll have to write a list of corrections and ask for an updated report, because I don’t want inaccuracies in his file. Highly annoying.
But his IEP meeting earlier this week went wonderfully well. I think the school district finally has a read on who we are, this family of mine (especially the obnoxious, mouthy mama), and they’re meeting us where we are, now. Hooray. And oh how I love Wonderboy’s speech therapist. She really is a gem. And I’m not just saying that because yesterday she raved about the progress we’d made at home during the week and told me I should be a speech pathologist myself.
My second-favorite moment from the meeting: when, after listening to rest of the IEP team group-wrangle their statements into educationese for the Official Paperwork, I was asked to contribute the “parent goals” and I figured I’d save time by just uttering it in the IEP jargon to begin with. Moment of silence around the table, then they all burst out laughing. Me, grinning: “Did I nail it?” School district lady in charge of entering everything into the computer: “Say it again, just like that, so I can type it in.” Heh.
Favorite moment from the meeting: leaving, with my little boy’s hand in mine, and his eager voice saying, “We go home now? Go play with my tisters?”
Oh how I love that child.
On Monday, I sat down with a giant pile of picture books to read for the Cybils. Rose and Bean joined me, and we wound up sitting there for hours, reading book after book after book. Passing them around: Ooh, you’re going to love this one! (They know me well: they were right every time.) I’m going to have to write posts about some of them because there are some must-share gems in the stack. Next time you make a library run, look for Chester’s Back! by Melanie Watt. Even if you don’t have little kids. We were crying laughing, even the thirteen-year-old. Especially the thirteen-year-old. The Lucky Star and One Hen just plain made me cry. And Dinosaur vs. Bedtime? Rilla’s new Favorite Book Ever. Bet I read it six times yesterday alone. Roar!
A blog friend was curious to know why we decided to get Wonderboy’s speech therapy and audiology services from the public school district instead of through a private (i.e. medical) source. It was a tough decision, and I still have moments where I second-guess it. Navigating the system, dealing with an IEP—not to mention the IEP team—hasn’t always been easy. But most of the time I think it was the best choice, bearing in mind that no alternative is perfect.
The advantages, for us, of accessing these services are:
• close to home
• free (including ear molds and hearing aid batteries)
• no waiting time before a scheduled session
• our ST and audi are easy to reach via email or phone, are excellent at keeping lines of communication open with us, and are eager to work with us on a friendly, personal level.
These are very important factors, all of them. For therapy situations in a medical environment, such as the local children’s hospital where Wonderboy currently receives physical therapy—his PT needs are medical and involve consultation with orthopedics doctors—we must accept long travel times, difficulty finding parking, parking fees, insurance co-payments, a bit of time in the waiting room even before a scheduled session, and a more detached relationship with the therapist. Our current PT at Children’s is certainly warm and friendly and has an excellent rapport with my son, but she works in a Big Hospital System with all sorts of bureaucratic red tape crisscrossing between us. I can’t call her directly on the phone; we certainly aren’t going to be emailing back and forth. It’s a different kind of relationship.
The speech therapist (our “new” speech therapist—not really new anymore, as Wonderboy has been seeing her for over a year now—this is not the therapist who sandbagged me in the “not always easy” post I linked above) and audiologist we work with in the school district are wonderful: excellent at their jobs, very respectful of our choices as parents, and eager communicators. We are in regular contact via phone and email, not to mention our weekly sessions. Wonderboy adores them both and looks forward to ” ’peech days.”
The down side, of course, is having to deal with the whole maddening IEP process and School District Policy. I have to be constantly on guard against encroachments upon our rights—not by the individual therapists, but by the school district. The district representatives are completely frank and somewhat apologetic about their need to “cover themselves” from any possible legal action disgruntled parents might take against them. This particular district has been burned before, it seems, by parents who filed lawsuits because they felt, after the fact, that the district had not “done enough” for their children.
District reps have told me quite frankly that they “just don’t know what to do with a parent like” me, i.e. a parent who believes meeting my son’s needs is my responsibility and not the public school district’s.
One tangle we ran into this summer was over the matter of evaluations for PT and OT. Wonderboy has muscle tone issues and motor delay, all part of his neurological, shall we say, unusualness. 😉 Because he has congenitally short, tight muscles, we have had to do a daily stretching regimen with him since he was four months old. About once a year, we check in with PT to make sure we are still doing everything correctly, and to see whether there are any new areas we ought to concentrate on. Every time he has a growth spurt, his muscles get even tighter (because bone grows faster than muscle), and when that happens, sometimes we’ll do a kind of booster session with a professional PT for a few months. That’s what we’re doing right now: three months of every-other-week PT at the children’s hospital to work on some specific issues.
I scheduled an OT evaluation at Children’s as well. (Which is a whole other story in itself, one I’ll have to save for another post.) His fine motor skills seem to be developing very nicely, but his doctors thought an eval would be a good idea to look at some global sensory issues and stuff (to be technical about it).
The school district had a very, very, very hard time accepting my assertion that we would be declining their offer of OT and APE (adaptive physical education, the closest they can come to PT) evals this fall. Since I already had PT and OT evals scheduled at Children’s, and since we intended to get PT and, if necessary, OT at the hospital rather than through the school district, I saw no reason to squeeze yet more appointments into our already busier-than-ideal schedule. I declined the district’s eval offer and gave them the dates of our scheduled evals at Children’s just so they’d no we were on top of this.
As I understood the regulations, the district is obligated to offer the evaluations and I as parent have the right to decline them.
The district begged to differ. That applies, they said, to the first time evaluations are offered. But once a child is in their system, once a need has been documented, they must (so they told me) provide these evaluations.
This conversation went back and forth between us all summer—amiably, mind you. I (amiably) dug in my heels, because I guard our family’s time very carefully. Every new appointment is a drain on our time. These medical and therapy-related appointments add up. They could easily dominate our schedule if I let them. There was no reason for us to make two extra trips to the school to duplicate evaluations he has already had, especially since I had no intention of receiving those services through the school district.
Oh, this was hard for the district to accept. Finally, in one rather surprising phone call, an extremely friendly and earnest district rep told me—with immense apology in her tone—that “we were at the point where the district would normally be forced to seek mediation.” Hello! This despite my having provided the district with documentation of the PT and OT evals scheduled at Children’s. But the district really, really didn’t want things to get ugly (i.e. go the mediation and arbitration route). They decided to “compromise” (I put it in quotes because I still believe they are talking about district policy, not state law) by accepting a written statement from me in which I acknowledged that they offered the evals, we declined them, and we are aware we can ask for them at any time.
I was happy to provide such a statement and put the matter to rest. I know that many parents in other school districts are in the position of having to fight to get their children necessary services, and I’m not inclined to get too cranky about having a district all too eager to provide services to my child. But I do think it is vitally important for me, as for all parents, to stay alert and informed about what the law says and what our rights are, and to make sure not to passively cede any of those rights.