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!
What Rilla’s saying at the end there is “With Alex, Leah, and Hopkins.” Totally unprompted, I swear.
When I watched our Christmas 2005 video the other day, the bit that gave me the biggest pang of nostalgia was watching Wonderboy signing away. He hardly signs at all anymore, now that he talks so much. I’m thrilled with his verbal speech, but I really miss the signing. It’s funny to think back on how much ASL dominated our lives (in a rich and satisfying way) for a couple of years there, and now our use and pursuit of sign language has slipped to the back burner, becoming something of a hobby rather than a daily necessity. Jane still wants to certify as an ASL interpreter someday, and every few months we pull out our materials and learn another chunk of vocabulary and grammar. There are community college courses we might take next year. It’s a beautiful and important language, and I don’t want to let it go, even if our boy doesn’t need rely on it for communication the way he once did.
And of course the Signing Time DVDs remain in great demand with my little people, as the video above attests. With Rilla, we’re seeing all the benefits of sign language we saw with the first three girls—because rudimentary ASL was a part of our baby & toddler life from the get-go, long before we had a Wonderboy or knew he had hearing loss.
Here are some old posts singing the praises of our favorite kiddie DVDs:
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.
The other day I mentioned that Wonderboy got another new diagnosis this summer and I have been wanting to write about it but needed to think through the privacy issues first. After taking some time to ponder, Scott and I agreed that this is something just as important to write about as the challenges and joys we’ve experienced as a result of our boy’s hearing loss, and that blogging as frankly about this new challenge as I have about other things is for the good—Wonderboy’s, ours, other families’. I know how much I have benefited from hearing other parents’ stories and advice over the years—during Jane’s cancer treatments, and Wonderboy’s early medical adventures, and during all sorts of challenges related to nurturing special needs children.
Information-sharing is a very good thing.
I said “this new challenge,” but the only thing new about it is that doctors put a name on what I had already been suspecting for some time. Wonderboy has mental retardation.
During my son’s first two or three years, any gaps in his comprehension were easily accounted for by his hearing loss and speech delay. But this past year, especially as Rilla (who is two and a half now) has zoomed past Wonderboy developmentally in many ways, we wondered more and more if there perhaps there was some other piece of the puzzle yet to be named. He is four years and nine months old, but he still doesn’t recognize colors by name—though he’s been signing color words since he was a baby. He doesn’t understand days of the week, is only just beginning to grasp “yesterday, today, tomorrow,” can’t count past three or four, enjoys baby board books but isn’t yet ready for storybooks.
He’s a dear, jolly, affectionate soul, the joy of our household. I’m not sure when I knew for certain that he had some kind of cognitive deficit overlaid on the hearing-loss challenges. I first used the words “mentally retarded” tentatively, questioningly, in an IEP meeting last winter. (He receives speech therapy and audiology services from our public school district but that’s all.) My words were met with dead silence around the table, and for once the school district “team members,” who usually have so much to say about everything, said nothing at all. I thought perhaps I’d blundered, had used a non-PC term, and after an awkward pause, the discussion moved on: we were there to talk about speech therapy and audiology, and nothing more was said about a cognitive deficit.
At the time I already had him on a waiting list for an in-depth evaluation with the behavorial/developmental clinic at the children’s hospital: an appointment Wonderboy’s geneticist and pediatrician had been strongly recommending for months. The wait was very, very long: the evaluation did not occur until this past July. By then we were reasonably certain in our own minds that autism was not on the table: based on everything I’d read, Wonderboy did not meet the social/communicative criteria for an autism spectrum diagnosis. And sure enough, the four-hour battery of tests confirmed that he is not on the spectrum. “But there is a cognitive issue,” the doctor said, “something you need to know…”
I’m not sure what official diagnosis I expected, but I know that the words themselves, when they came, even though I’d had my own suspicions, were a shock—not the condition so much as the terminology.
“Mental retardation” is a label with an awful lot of social baggage, especially for people of my generation. Was there anything more insulting you could call someone in grade school, or be called, than “retard”? And twenty, thirty years later, that slur is causing just as much pain and controversy as it ever did.
Being something of a word person, I was fascinated by the reaction the words got when we told friends and family about the diagnosis. Honestly, I think I had to spend more time talking to people about the terminology than the condition it describes. Even the Wikipedia entry begins with a long discussion of the various terms that have been used and discarded over the years—discarded after common usage coopted a clinical term for use as an insult. First “cretin,” then “idiot” and “imbecile” (indicating differing degrees of cognitive disability), then “moron,” a word invented by doctors in the early 20th century, and when that became a slur like the others, “mentally retarded” came into use.
I confess that sounds a bit jargony to me. It’s hard to imagine using it in conversation. Also quite a mouthful is the broader term “developmental disability,” which does encompass Wonderboy’s physical and cognitive delays. I am seeing that term used quite a bit online, on special-needs forums and such. I suppose it lacks the emotional baggage of “mentally retarded,” but for us it’s a moot point anyway, because here in Southern California at least, “mental retardation” is still the clinical term in common use: it’s what appears on my son’s charts now, and whenever I walk into a doctor’s office and am asked, as I always am, “what’s his diagnosis,” among the list of medical and developmental terms I must rattle off is, now, mental retardation.
[2012 update: Now the accepted term, both in educational and medical circles—at least here in San Diego—is "cognitive disability."]
Whatever you call it, the fact is that my boy’s brain doesn’t work the same way most four-going-on-five-year-olds’ brains do. At this point, he has great difficulty grasping abstract concepts. His language skills are actually quite good—as long as we’re talking about concrete things. Most abstract concepts seem to elude him right now. Developmentally, he is much more like a two-year-old than a four-year-old.
And he is wonderful. His joy, his eagerness, his abundance of love and affection—these are the qualities that melt me a hundred times a day, the qualities that make him uniquely him. He is his sisters’ darling. The way he laughs and literally quivers with excitement whenever one of us has been away for a few hours and returns home: his happiness is completely infectious, and I’ve seen him set whole rooms of people to smiling.
This is not to say there aren’t challenges: there are many. After the diagnosis, when fuzzy suspicion became clear understanding, I realized that I pretty much have two-year-old twins at the moment. No wonder I’m always wiped out! Pregnant, pushing forty, with toddler twins: you better believe I began cutting myself a whooole lot more slack after I fully grasped the reality here.
For me it is always better to have a name for something, better to have a firm diagnosis to wrap my head around. And so although those words were initially a bit of a jolt, in many ways they made life much easier.
I have volumes to say about all the different aspects of this newly defined reality, and much yet to learn. I learned a long time ago that the blessings that come along with a special-needs child are immense—and immensely beautiful. I love my little guy to pieces. Doesn’t that grin just make you melt? Oh, he is the sweetest boy! I was laughing last week because four separate people—two different PTs who saw him on separate days, his speech therapist, and her assistant—all remarked to me, spontaneously, independently, a variation on the same exact statement: “Your son is so much fun to work with! What a sweetheart he is.”
I am reposting this piece from March, 2007, now that I have finally gotten around to fixing the broken image links. When I imported it here from Lilting House, all the images fell out. Now they’re back!
Did you know that ears are one of the few body parts that never stop growing? I think noses might be the other. Besides hair and fingernails, obviously.
When you wear behind-the-ear hearing aids, the hearing aids last for years, but the ear molds—the little custom-made silicone or acrylic doohickeys that fits into your ear—need replacing every so often. As your ear grows, the ear mold ceases to fit, and first you get a feedback problem, and then eventually the mold just won’t stay in the ear at all.
So you go to the audiologist’s office, and she makes new impressions of your ears with a quick-hardening goo. You ship the impressions off to a lab, and in a couple of weeks you’ll have your brand new ear molds.
If you are three years old, you may find this process somewhat entertaining, if mildly uncomfortable. If you are six years old and the uncomfortable part is happening to your brother, not to you, you will consider it a ripping good time. Beanie pronounced it “huge fun.”
I get a large number of hits every day from hearing-aid-related searches, including variations of “toddler ear molds,” so I thought it might be helpful if I posted a walk-through of the process. Besides, pictures are always fun.
First the audiologist checks your ears, making sure there isn’t too much wax in there—that might mess up the shape of the impression. Then she carefully inserts a little foam stopper to make sure none of the impression goo goes too far up the ear canal.
Then she pops the two kinds of goo out of their little bubble wrappers, and she mixes them together into a pliable substance that can be squeezed out of a syringe but will harden within a few minutes. Beanie, supervising, thought this mixing process looked pretty nifty and is now wondering how to work “become an audiologist” into her plan to be a scuba-diver with ten children.
The audiologist scoops the goo into the syringe and carefully squeezes it into the ear, sort of like making an icing rose on a birthday cake. Now you have to sit and wait. You can’t poke at the goo, much as you might wish to. Nor can you pull on the string that is connected to the little foam stopper inside your ear canal. Patience, grasshopper.
Meanwhile, the audiologist squirts the leftover goo out of the syringe. This, I am told, is THE BEST PART.
Let’s do the other ear while we’re waiting. It’s okay to drool.
Finished! Time to pull out the impression. No need to be suspicious; it won’t bite.
The impressions go into a box and are dispatched to the Lab, that mysterious place where ear molds are born.
Now comes the fun part! (The other fun part, says Beanie.) What color ear molds do you want? The sky’s the limit. No, Bean, you can’t have a pair of sparkly ones for yourself.
What color did he get? You’ll have to wait two weeks to find out.
Wonderboy’s hearing loss came as a shock to us. Sure, we knew he’d failed the newborn hearing test. Three times. But those rounds of testing were administered in the NICU where there is always a humming and beeping of background noise, and the tech had told us that ambient noise could skew the test results. We had more pressing things to worry about: his (minor) heart defect; his recovery from omphalocele repair surgery; the genetic testing necessary to determine whether he had a potentially serious chromosomal syndrome; the fact that he was going home on oxygen. At least he was going home, and we tucked the hearing-test business to the back of our minds and focused on the immediate business of keeping him alive.
Every month the health department sent us a letter reminding us to have the hearing screen repeated. Sure thing, we said, just as soon as things slow down a bit. We were constantly having to take him to some specialist or another. The chromosome study came back negative: his medical issues were not due to a genetic syndrome. He was just one of those babies for whom something goes slightly awry early on in utero, resulting in a number of physical abnormalities down the line. An MRI had shown brain abnormality, but what its effects would be, no one could say: time will tell, they said. (They are still saying that.) He had extremely high muscle tone (hypertonia) and could not stretch out his arms and legs very far. His fists were tightly clenched. He started physical therapy at four months of age. He required emergency surgery to repair a double hernia with incarcerated bowel. The cardiologist was still keeping a close eye on his heart. The hearing test would just have to wait.
Besides, we told ourselves, we know he isn’t deaf. He startled to loud noises. Of all the things there were to worry about, we really didn’t think hearing loss was one of them.
But by six months, we had suspicions. He wasn’t babbling. He didn’t turn his head at the sound of my voice, lighting up with recognition before even seeing me, as our other children had. We took him back for another hearing screen.
The audiologist said something about a “mild” hearing loss, and I thought that didn’t sound too bad. “Oh, no,” she told me, hastening to set me straight. “It isn’t like a ‘mild’ fever. ANY hearing loss is serious. Most speech sounds fall at the bottom of the scale, so if you have any hearing loss at all, you’re going to have trouble with speech.”
As it turned out, Wonderboy’s loss was a bit more serious than the audiologist first thought. Further testing placed him at the “moderate” level on the scale of mild—moderate—severe—profound. Unaided, Wonderboy’s ears can’t detect sounds softer than 50 decibels. Most speech sounds fall in the 20-decibel-or-lower range. Our little guy can hear vowel sounds, the louder middles of words, but few of the consonants that shape sound into speech. For Wonderboy, people probably sound a lot like Charlie Brown’s teacher. Wah-WAH-wah-wah-waahh-wah. We learned about the speech banana: the area on a graph that shows where speech sounds fall in the decibel and frequency ranges. Wonderboy can’t hear sounds above the horizontal 50 line on that chart.
(More or less. He has a sloping loss which is slightly better at the lower frequencies.)
By his first birthday he was wearing hearing aids, and what a huge difference we could see! Aided, he tests around the 20-decibel range. He hears and understands a great deal of what we say. He is two and a half years old now, and he is finally beginning to add some consonant sounds to his verbal speech. Daddy used to be “Ah-ee” and now he is “Gaggy.” (This cracks me up. You can get a lot of mileage out of calling your husband Gag.) Grandpa is Amp-Ha. Wonderboy’s baby sister is “Gay-gee.” As you can see, he doesn’t have a B sound yet. His M is perfect, though; I have been Mommy, clear as a bell, for over a year.
But Wonderboy’s verbal speech is only part of the picture. His actual vocabulary is enormous, thanks to sign language. We are huge fans of the Signing Time DVDs. He uses a combination of sign and speech; we all do. Although it appears he will be primarily a verbal person as he gets older, sign language will always be an important second language for him. Hearing aids, incredible as the technology is nowadays, don’t do you any good at the swimming pool. Just for instance.
Hard of hearing. It used to be a phrase that conjured up in my mind the image of a grizzled old man with an ear trumpet. What? What’d ye say? Speak up, lad! (Apparently he is a grizzled old Scotsman.) Now it applies to my son. Words pop up on a TV screen, “closed captioned for the deaf and hard of hearing,” and I’ll give a little mental jump: Oh! That means Wonderboy!
Watching our children learn to speak is one of the great delights of parenthood. We mothers tend to collect their funny pronunciations, their experimentation with the meanings of words. This time around, my joy has been doubled, for I get to see communication unfold in two languages. His funny little toddler signs are just as endearing as any “helidopter” or “oapymeal” ever uttered by a two-year-old. (“Oapymeal” was one of Jane’s. It meant oatmeal. I served it often just to hear her say it.)
There are some links to American Sign Language resourcesin the sidebar of my old site. (I’ll set up a page here soon as I get a chance.) I can’t say enough about the wonders and benefits of ASL, not just for deaf and hard of hearing children, but for all babies and toddlers, especially those with any type of speech delay. ASL is a beautiful, nuanced language, a visual poetry. I count myself privileged to have been put in the way of learning it. Jane is determined to certify as an interpreter someday, and I have to admit I’m a little jealous. I wish I’d learned at her age.
Wonderboy makes a fist and touches a knuckle to his cheek, wiggling the hand. “Ah-hul!” he shouts. Apple, in two languages. The speech banana? We’ll get there, one way or another.
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?
I meant to blog about this last week but need more time to do some research. I haven’t lived in New York for six years and am not totally up to date on the education regulations there any more. But this recent development shocked me and it most definitely needs to be talked about.
These special services are paid for by the taxpayers. In other states, the public schools are required to provide the same special services to homeschooled and private-schooled children as they do to public-school students. Federal law mandates this. It is under this law, the Individuals with Disabilities Education Act, that Wonderboy is able to receive necessary speech therapy and audiology services through our local school district, even though we are officially registered as a private school under California education regulation.
I am not a zealot. I am a concerned parent who, at great personal and
financial sacrifice, is trying to provide her two, exceptional children
with the tools needed to become life-long learners and independent,
creative problem-solvers capable of living their lives to the fullest
their capabilities allow…This
act by the NYS Ed. Dept. (revoking services to home schooled IEP kids)
feels like a slap in the face for families whose financial and emotional resources are already spread thin to breaking.
Andrea suspects that the policy change has more to do with funding problems than anything else. No matter what the cause, it is hard to believe that the state would choose to interpret the federal law in a manner that excludes homeschoolers but includes privately schooled children. This is stunningly inconsistent.