Archive for the ‘Special Needs Children’ Category
Today was doctor appointment day. Pediatrician checkups for Wonderboy and Rilla (including vaccinations for both, which made me smile in connection to the comment thread on yesterday’s post), and then Wonderboy’s annual cardiology checkup to monitor a narrow valve.
9:30. I drop the older girls off at Chez Lickona, where warm-hearted friends have offered the entertainments of their pool, their five children, and a pile of origami paper as an alternative to hanging around in waiting rooms all day. My girls are immensely grateful, and that’s before any of us knows just how much waiting-room-hanging-around there is going to be.
9:55. We arrive at the pediatrician’s office a few minutes early; I’m so proud. Both appointments go well (although Rilla, who is highly offended by needles, would beg to differ).
10:50. Since I have a little time to spare before we need to head to the next appointment, I swing by Target to pick up some deeply discounted moss roses I’ve had my eye on.
11:20. We run by home to park the posies in the shade, and I grab some lunch for the little ones. I decide against grabbing any lunch for myself, a decision I will come to regret.
11:45. Back on the road. We’re going to be early for our 12:45 check-in time at the Children’s Hospital, but experience has taught me to allow lots of cushion room in the schedule. Last time the boy had an appt here (that time it was neurology), we got stuck behind an accident on the freeway and—despite my panicked phone call to say WE ARE ON OUR WAY, ALMOST THERE!!!!—arrived twenty minutes late for our appointment to discover the doctor had given our slot to the next patient and then moved a meeting to that patient’s time slot, so: "Sorry, you’ll have to reschedule."
12:10. We arrive at the hospital and actually find parking on the first pass through the garage. We are somewhat less successful at finding the cardiology suite on our first pass through the hospital. It’s a large medical complex with four or five buildings. Two of them, according to the giant map out front, contain rooms devoted to cardiology. I decide to try "Cardiology Clinic" first, as opposed to "Cardiology Offices."
12:20. I realize I was kidding myself about the likelihood of finding either one.
12:25. No, wait, here it is! And I guessed right about needing the Clinic, not the Offices. I sign Wonderboy in.
12:32. We are taken to another room for the check-in paperwork. I am impressed by the cheerfulness and efficiency of the receptionist. This office runs like a machine. However, I’m surprised by the news that Wonderboy is being sent to Radiology for a chest X-ray before we see the cardiologist. I had expected some tests after the cardio consult—an EKG, an echo—but no one had mentioned anything about an X-ray.
12:44. We are sent back to the waiting room, but only for a few minutes. A nurse takes us across the hall for the EKG. Then she sends us to Radiology for the chest film and says to check back in at Cardiology Reception when we’re finished.
1:20. We do just that. Wonderboy was great in X-ray, and Rilla never even asked to get down from the sling. The cardiology receptionist says to have a seat, the doctor will be with us shortly. I know perfectly well that "shortly" is hospital code for "sometime this century," yet everything has happened so efficiently so far that I actually allow myself to believe shortly might mean "shortly."
1:21. Rilla slips out of the sling, ready to roam a little. Wonderboy supervises as she flirts with other patients and explores the corners of the room. She steals another baby’s hat. Wonderboy rats her out. Everyone laughs.
1:33. Ha ha, it’s not so funny the third time. Or maybe I would think it was funnier if I hadn’t skipped lunch. Wonderboy, too, is finding the waiting room less entertaining than it once was.
1:40. Rilla, searching for new ways to delight her admiring public, plants herself behind the door where she is certain to be smushed when the next person walks in. I retrieve her some seven or eight times. She is not amused. I stick her back in the sling. Wonderboy begs to go hoooome.
2:05. One of us is lying on the floor, sobbing. No, not I—I’m not that far gone yet.
2:10. I ask the receptionist how much longer she thinks the wait will be. "Well," she says brightly, "your appointment time wasn’t until 2:00."
"No," I say. "We were told to be here at 12:45."
"That was for check-in. And you had the chest film. Your scheduled doctor time is 2 p.m."
I sputter. "I wish I’d known that! We’ve been sitting here for 45 minutes. I could have taken them to the cafeteria or something." (Translation: I could have been eating pudding. I adore hospital cafeteria butterscotch pudding, and I don’t care who knows it.)
Receptionist: "Well, you know, you did check in early."
Me: "Right, but if I’d known we couldn’t see the doctor until 2, we wouldn’t have sat here all this time."
Receptionist: "If we tell people their doctor times, they come late, and it backs us up. But you came early; that’s why you’ve waited so long."
Me: "But if I’d known—never mind. Anyway, it’s 2:15 now."
She glances at the clock and furrows her brow. "Hmm. Well, go back and wait until 2:30, and if they still haven’t called you, let me know."
2:25. Wonderboy is quietly moaning. Rilla, in the sling, has collapsed into a sweaty, snoozing lump on my chest. I am thinking about eating her.
2:29 and 59 seconds. A nurse calls Wonderboy’s name. The receptionist beams at me: I’m someone else’s problem now. The nurse takes us across the hall to a small suite containing three exam rooms and a door marked HOSPITAL PERSONNEL ONLY. She settles us in one of the exam rooms and takes Wonderboy’s vitals. The doctor, she tells us airily as she departs, will be in any minute.
2:35. Not this minute.
2:39. Nor this one.
2:42. I am eyeing the Purell dispenser, wondering if that stuff is edible. Don’t they say little kids can get drunk from licking it? I pass the time by speculating about dosages. Wonderboy, meanwhile, has given up hope of ever seeing his sisters again and is now writing out his last will and testament on the back of an immunization brochure.
2:49. I notice that Rilla is wearing someone’s watch around her thigh.
2:55. I open the door and peer into the deserted suite. The other two exam rooms are empty. The PERSONNEL ONLY door is closed, and a steady, murmuring voice can be heard from inside. The nurse bustles through, and I stop her and ask how much longer.
She glances at the PERSONNEL ONLY door. "Any minute."
"It’s almost three," I say. "Our scheduled appointment time was 2:00." I stare pointedly at the other, empty exam rooms.
"The doctor is just dictating notes," the nurse says, somewhat reluctantly. "She’ll be in as soon as she finishes."
"We’ve been waiting for an hour," I say, but she has already darted away, leaving me alone with my hunger, my slumbering infant, and my weeping, despairing son. Through the door, the murmuring continues.
3:00. I am still standing there, staring at that door.
3:01. It opens! The doctor emerges! She enters our room!
3:11. She leaves!
During our ten fabulous minutes together, she has taken a complete and thorough family history and listened to Wonderboy’s heart. Of course, she tells me, he’ll need an echocardiogram before she can make a real assessment. "Can we do that today?" I ask, even though we’re already past the time I told the Lickonas I’d pick up the girls. They’re wonderful people; they’ll understand.
"Oh, no," says the doctor, visibly surprised, as if I’d asked for a table in a swank restaurant without a reservation. "You’ll have to make an appointment and come back."
She whisks away, presumably to dictate our notes in the special room. Patient’s mother has air of quiet desperation symptomatic of lunatic fantasies involving billing medical professionals for time wasted. Patient was cooperative but depressed, as indicated by his repeated requests (via sign language) for me to sign his will as a witness. Patient’s 15-month-old sister is adorable but displays tendencies toward kleptomania. Refer entire family to psych.
You know how enthusiastically I recommend the Signing Time DVDs as a resource for developing expressive and receptive language skills in young children, even those whose hearing is normal.
I’ve written, too, about how useful I am finding the Visual Phonics program as an aide to helping Wonderboy (3 1/2 years old, moderate hearing loss) expand the range of consonant sounds he can make.
I’m always on the lookout for useful resources, and this website looks promising: Mommy Speech Therapy. Posts range from practical advice for helping a child work on specific sounds to informative discussions about working with speech professionals, getting a diagnosis, and when to be concerned about things like lisps, pacifiers, and thumb-sucking.
OK, so I’m 15 months late making this little PSA. I’ve been meaning to share this advice since the day Rilla was born—the day she failed her newborn hearing test.
Yup, that’s right, she failed. Just like her brother had failed, three years earlier.
Hearing loss can run in families, you know. When the hearing-screen tech gave me the news, it came as a bit of a blow. To be perfectly honest, the first thing that passed through my mind was: Oh dear God, where are we going to come up with another five grand for hearing aids?
(Did you know that most insurance companies do not cover hearing aids, even for children? Don’t get me started.)
But then I managed to collect my wits, or at least enough of them to ask some questions. Had she done the test in the newborn nursery? Yes, she had. Aha.
I had learned from our experience with Wonderboy that many newborns don’t pass the initial screen in the nursery, especially in a NICU (as with Wonderboy, but not with Rilla) where there is so much ambient noise. Wonderboy was tested three separate times on his discharge day before they gave up trying and sent us home with instructions to have him re-tested as soon as possible, but not to worry, it was highly unlikely he really did have hearing loss, it was just all the background noise in the NICU mucking up the test results.
"Ask for the newborn hearing test to be administered in the quiet of the mother’s room."
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OK, in his case, it turned out NOT to be the ambient noise skewing the results; the kid really does have hearing loss. But still, that didn’t mean Rilla’s test had necessarily been accurate, and I wanted confirmation before leaping to conclusions.
I asked the tech if she could re-do the test, right there in my hospital room, where it was nice and quiet. I didn’t even have a roommate.
The tech was kind and sympathetic, but doubtful. "Honey," she said gently—they always call me honey, these hospital personnel about to deliver potentially upsetting news—at least, the female ones above age forty always seem to—"I’m willing to give it a try, but this is a brand new machine, state of the art, and it’s especially designed to NOT be affected by ambient noise. And with hearing loss in the family…"
"I know," I said. "But I think it’s worth our time to try."
"Well, what you need to do is have her re-tested in one month."
I sighed and explained that my HMO would make me go all the way to Richmond, 80 miles away, for further testing (this I knew from prior experience), and it would be a big pain in the neck, and if there was any chance today’s test wasn’t 100% accurate, it would be a huge help to me to give it another try.
Now it was her turn to sigh, and you could see her thinking thoughts about how you have to humor these post-partum mothers, and she shrugged and said, "All right. We’ll try. I’ll go get the machine."
She wheeled in the contraption and attached the little sensors to Rilla’s head, and stuck the thingamajig in her right ear. Then, while the test started running, the tech popped back into the nursery for a chart she’d left behind. When she returned five minutes later, she took one look at her State of the Art Machine and gasped.
"It’s finished already! It took me 20 minutes to get a finish before!"
Me: "Finished, good?"
But already I knew it HAD to be good, because the way this test works is the machine sounds little clicks into the baby’s ear, and the sensors record how many times a nerve twitches or something like that, in response to the clicks. You need a certain number of clicks within a certain window of time to get a "hearing is normal" result. If the twitches aren’t happening, the machine will keep on sounding clicks until a biggish chunk of time has passed, and then you get a "hearing is not normal" report like the one Rilla had already been given.
A finish in five minutes meant the machine had already counted enough nerve-twitches to know that Rilla’s right ear was working just fine.
The tech was openly flabbergasted. This is where this becomes a really satisfying story, because it is one of those rare times that an expert admits frankly, and with pleasure, that she was mistaken.
"I’m stunned," she said. "It’s not supposed to be affected by ambient noise, but obviously it is."
I could have kissed her.
She tested the other ear, and that side too yielded A-OK results in under five minutes. Rilla’s hearing was pronounced normal, and the stern document instructing us to take steps X, Y, and Z toward further testing was removed from her chart, ripped in half, and pitched into the wastebasket.
Of course, it’s possible for a child who passes a newborn hearing screen to show signs of hearing loss later in life, and sometimes it is years before a parent realizes there is a problem. If Rilla had been diagnosed with hearing loss at birth, or six months later like her brother was, or at any point in the future, we would deal with it, and it would be fine. The point of my pushing the tech to re-test, and the point of this story, has simply to do with a tip that can save parents time and unnecessary anxiety. When the hospital wants to administer a hearing test to your newborn, request that it be done in the relative quiet of the mother’s room or some other isolated place, not in the nursery.
The tech seemed somewhat dazed, but she was awfully sporting about it. She told me, "This is really going to change things for me. It usually takes me up to an hour to test each baby. I think you’ve just saved me a ton of time."
I can’t tell you how much I appreciated those words!
But I appreciated being spared the drive to Richmond, and the stress of putting baby Rilla through further testing (stress on her, I mean), and the month or more of back-of-the-mind worry we’d have had to deal with while waiting for the next test, even more. I was able to take her home without any questions gnawing at me, and when I think back to that peaceful, happy babymoon,
I’m terribly grateful the tech was willing to honor my request.
Monday morning, early. Wonderboy and I are off to speech therapy in a few minutes. His sessions have been going wonderfully well, and he is now regularly saying B and P sounds. This is huge progress; two months ago his only consonants were M, hard G, K, N, and an occasional H (as in "Huh moni!"—that’s "Good morning" to you conventionally annunciating types).
He loves Miss Tammie, the speech therapist, and our fun half-hours in her room, playing games, singing (okay, listening to Miss Tammie sing), putting the buh buh baby and the puh puh popcorn on the buh buh bus, and the puh puh puppy goes in the buh buh box.
His astonishing and rapid progress is due in large part, I believe, to Tammie’s use of something called "Visual Phonics." This language development program is actually new to Tammie, and we are more or less learning it together. The concept is truly brilliant. In Visual Phonics, a hand sign is assigned to every single sound. It’s like taking the sign language alphabet (with which Wonderboy is already quite familiar, though he does not sign it himself yet—when he was two, his favorite way to fall asleep was to watch my hand while I signed and sang the ABCs) one step further.
For example, there a sign for the B sound (buh). You use the ASL sign for B, a flat hand, fingers together and pointing up, thumb folded over the palm, and you hold that handshape up by your mouth, moving the B away from your lips as you say "Buh."
Not all the Visual Phonics signs are based on the ASL alphabet; the P has your fingers sort of exploding away from your lips. Really, it hardly matters WHAT the signs are; the brilliant innovation was in attaching signs to these small units of sound. There are signs for every speech sound, including consonant blends and all the vowel sounds, including diphthongs.
Wonderboy GETS sign language; he knows how to connect a sign to a spoken word to a thing or idea. He clicked with the concept of buh and puh immediately, just as soon as we turned the sounds into Real Things for him by giving them signs.
I missed a chance to go to a Visual Phonics training session last month, but I’ll share more about the program as I learn about it. It is primarily intended to help kids struggling with reading, but Gallaudet and other institutions have recognized its immense value in both reading and speech instruction for deaf/hard-of-hearing kids. I imagine Visual Phonics is going to be a big part of our lives these next few years, first in helping my boy learn to speak English, and later in helping him learn to read.
Buh buh brilliant. Also, buh buh bye—I’ve got to run or we’ll be late!
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, your brother isn’t getting the sparkles.
What color did he get? You’ll have to wait two weeks to find out.
Moreena’s most recent post at The Wait and the Wonder cut me to the heart. After spending the last three months in a suspenseful wait for the phone call that would mean a new liver for her daughter Annika, she just found out that Anni’s transplant team hasn’t yet bumped her to active status on the wait list.
…when we got that letter a few days ago, the one intended to let
us know about the new patient line at UNOS, but shockingly telling us
also, by the way, that a huge part of the way we had viewed
the world for the past 3 months was simply wrong, we were right back to
the feeling we had 5 1/2 years ago. The feeling that we had been
walking through the world upside-down, and no one had bothered to tell
us.
…We knew that Anni’s surgeon still had serious reservations about
transplanting her, given her history. We couldn’t help but wonder if
Annika’s inactive status meant that Chicago had given up on her, and
neglected to mention their decision to us.
In short, we had absolutely no idea what was going on. We didn’t
have a clue about what is easily the most important issue in our lives
together.
"Is it us?" Moreena wonders. "Or does every parent go through these horrible moments, wondering
whether or not anyone even bothers listening to their questions."
Oh, Moreena, it isn’t just you! Your post smacked me right back to Wonderboy’s infancy, when the geneticists were running a bigtime takes-a-month-for-results chromosome study to determine whether there was some genetic syndrome which tied together all his various medical problems. He was three months old, and then he was four months old, and we were waiting, waiting, for that call.
I had, of course, Googled his collection of abnormalities. About ten different websites told me that my son had four of the five primary markers, and several more of the secondary markers, of a pretty scary condition called Beckwith-Wiedemann Syndrome, also known as gigantism. I tried to be patient, giving the doctors time to complete their tests, knowing they would call me as soon as there was a firm diagnosis. I knew, too, that they had no idea I was sitting by the phone chewing my nails off over Beckwith-Wiedemann. They didn’t want to scare me with possibilities that might not even be in the picture, and how were they to know I’d pieced together the clues from their pointed questions and Wonderboy’s symptoms?
But the days, the weeks, ticked slowly by, and the waiting was agony. The waiting is always agony. I can handle a bad diagnosis better, honestly, than I can handle not knowing. Finally I couldn’t stand it any longer and I called the geneticist. "Are you suspecting Beckwith-Wiedemann?" I blurted. The voice on the other end of the phone stammered in obvious surprise.
"We were," said the doctor, sounding shocked I’d even heard of the syndrome, "but we ruled it out two weeks ago."
Two weeks ago. Two weeks of our lives spent wondering, praying, mentally preparing ourselves, trying to be normal and sunny with our other children but all the time haunted by the back-of-the-mind fears that want to strongarm their way to the front of the mind and dominate everything.
Two weeks, it turned out, during which we need not have worried about that particular spectre, because the doctors had already crossed it off the list.
Months later, I had the honor of being the guest speaker at a large assembly of doctors at that same hospital. It was an incredible experience, and I should maybe write more about it in another post. But one of the best things about it was that it gave me the opportunity to say something I’d wanted to say for years. The world has changed, and doctors are going to have to adjust to a new playing field. They have to know that their patients (or their patients’ parents) are going to go straight to Google when they walk out of the office. We have more access to medical information now, and it’s hard to figure out which sources are reliable and which ones apply to your specific case, and it’s easy to jump to the wrong conclusions or assume a worse diagnosis than is really the case. I’m not saying it’s necessarily a good idea to try to do your own research, but a lot of us are going to do it anyway. How can we not try? Sometimes it’s a parent’s hunch that saves a child’s life. The parent has a lot more invested in "the case" than the doctors do, and the questions consume that parent’s life in a way far more raw and pressing than even the most ardent or compassionate professional curiosity.
In the same way, a parent can’t help but think nonstop about when The Call will come, when there is a life-affecting phone call expected. My two weeks of waiting for the call that might put a name on what was wrong with my son were nothing compared to the three months Moreena has spent waiting for the call that means her little girl gets another shot at survival.
In short, we had absolutely no idea what was going on. We didn’t
have a clue about what is easily the most important issue in our lives
together.
Those are heart-piercing words. I am spitting mad on Moreena’s behalf today; I can’t help it; I resent the notion of a medical team knowing more about a family’s reality than the family itself. The wait is hard enough. At the very least, a mother deserves to know what she is waiting for.
First things first: I am happy to report that Friday’s adventure in ick wasn’t the first wave of something worse; Wonderboy stayed healthy over the weekend. Must have been carsickness (again).
But I promised to tell you how the IEP meeting went. It was a very good meeting and I got exactly the outcome I was looking for: Wonderboy will receive speech therapy and audiological services (ear molds, hearing tests) from our local school district.
There were six people at the meeting, plus me (and the boy and the baby). Audiologist, district school psychologist, two speech pathologists, itinerant deaf/HH teacher, deaf/HH preschool classroom teacher. That’s six, right? A goodish crowd. All very nice, all respectful and eager to meet us where we are.
After introductions, we discussed the various options open to my boy (preschool, private speech therapy, etc.). We talked about the results of his speech evaluation and his history. The deaf/HH preschool teacher described her program, which is a four-hour/five-day preschool in which three other students are currently enrolled. It sounds like quite a nice little program, but I don’t think it best fits the needs and situation of Wonderboy and the rest of our family, so I declined that option, choosing private speech therapy sessions and audiology services instead.
Then we looked at the "goals" that had been drawn up by the speech therapist, itinerant deaf/HH teacher, and audiologist. The way it works is you must spell out, on special forms, the goals you’re aiming for and the specific services that apply to each. For example, one goal for Wonderboy is to be able to make several additional consonant sounds in a year’s time. ("Child will correctly produce consonant-vowel-consonant words containing the phonemes b, p, m, t, d, with amplification [hearing aids], with 90% accuracy.") (That doesn’t guarantee he definitely WILL meet that goal by this time next year, but that’s what we’ll be aiming for.)
I was in complete agreement with the speech therapist’s goals and recommendations. I approved those pages and they made it into the final IEP.
However, I did not agree with the necessity of the itinerant teacher’s goals/recommendations. Her goal had to do with language development—not sounds, but using words and sentences—and I do not see a need for outside help in that area. (To put it another way: we can homeschool him in that just fine.) The teacher, who is a very nice and pleasant person, described a curriculum she would like to use—both directly with Wonderboy and "training" me to use it myself. I had to suppress a smile. The curriculum is designed to get a child talking about all the different parts of his day, using conversation about household objects and activities to develop facility with sentences and individual parts of speech.
I think we’ve got that covered.
So we scrapped that goal and its accompanying recommendation for services. This was not a big deal; there was no tension involved. As the parent, the final say on goals and services is up to me. But it was also up to me to decline this section of the proposed IEP.
I mention that here because I think it’s an important part of understanding the IEP process. The school district can make recommendations, but the parent must approve every syllable of the documentation. If you’re not happy with what’s in the IEP, don’t sign it until you are!
Which leads me to a very interesting and important thing I learned at the end of the meeting. I need to look into whether this applies to California only or the entire nation. As my pen was poised to sign the final paperwork, the psychologist notified me (as she is legally bound to do) that once the parent signs the IEP, the child is officially "in the system," and the parent can’t just decide later to pull him out of services without a big to-do. From that point on, the appropriate district personnel (in this case, speech therapist) must agree that the child no longer needs these services in order to cancel them.
This is a significant point. Apparently, it is a recent change to the law (again, I’m not sure whether we’re talking state or federal law—I’ll get back to you on that) during the past year.
Naturally, this caught my interest. I don’t like to be boxed into anything! Now, this news did not affect my course of action, because Scott and I had already made the decision to access these services through the school district instead of seeking them privately. We weighed the pros and cons before I ever picked up the phone to call the district.
But I was curious about how exactly this provision works. I asked what would happen if a parent wanted to pull her kid out of services, say, a month or two down the road. One of the teachers explained that if the speech therapist (or physical therapist, OT, etc) did not agree that the child’s special needs no longer existed, the case would have to go to mediation. If an agreement could not be reached—which I assume means "if the parent still wants out"—then the school district would initiate a due process hearing.
Got that, homeschoolers? If you decide to tap into the public schools’ special-needs services (which is your right), be sure you’re completely comfortable with the goals and services spelled out on the IEP before you sign it. Because once you do, you’re committed. Or rather, your child is. In California, at least.
So did I sign, you’re wondering. Yes. I do want to access the speech therapy and audiology services (ear molds, hearing tests) to which my son is entitled. After all, my tax dollars are helping to pay for these services. But this new law makes it all the more important to do your homework and to read the paperwork with an eagle eye. Make sure the IEP says exactly what you want, and not a syllable more, before you give it your John Hancock.
Related posts on accessing public services for special needs:
Beginning the Process
The Speech Evaluation
Getting an IEP
Last month I posted about beginning the process of setting Wonderboy up with speech therapy services through our local public schools. These things take time (especially during the holidays), and we are just now moving to the next step. Today will be the "goals" meeting with various district personnel to determine what will go in Wonderboy’s IEP, or Individualized Education Plan.
This important document will spell out what services Wonderboy will be getting from the district and what our goals are for his progress in the next six to twelve months. If he were enrolled in a public school, the IEP would also define what special arrangements would be necessary to help him in a classroom: accomodations such as an aide, an FM system, seating near the teacher, and so forth. (I’m giving broad examples here, not necessarily things that would apply to a three-year-old.)
In the home, meeting Wonderboy’s specific needs is much easier and more intuitive than would be the case in a preschool setting, so his IEP will serve chiefly to get him speech therapy. We have a couple of options for this, and part of my job as his "case manager" has been to educate myself about the possibilities. Our district does have a dedicated deaf/hard-of-hearing preschool classroom, and I have been strongly encouraged by district personnel to consider placing him in this class. I don’t at all mind their making a pitch for the preschool: it’s part of their job.
Neither do I have any qualms about politely declining the offer. Deciding what’s best for him is part of MY job.
Here are the steps that led up to today’s meeting:
• Knowing Wonderboy qualified for speech therapy, I called the district special education office and requested an evaluation. (Even if you are only wondering whether your child qualifies for services, you can call and request an eval. The purpose of the eval is to assess whether there is indeed a qualifying need. For children over three, call the local school district’s special ed office. For children under three, call the Early Intervention office. Google your town’s name and "early intervention" and you’ll probably find the number easily.)
• The special ed office asked me to fax over his IFSP (Individualized Family Service Plan). This is the equivalent of the IEP for three-and-unders. If we had not had an IFSP—that is, if I were seeking services for the first time—the special ed office might have asked to meet with us before setting up the eval, but not necessarily. The eval itself is what determines the child’s need for services. Certain medical information can be helpful, such as Wonderboy’s latest audiologist report.
• Special ed passed our name and number to the district speech pathologist (since I was asking for speech therapy). She called and set up the evaluation I wrote about in December. If I had wanted, a physical therapist could also have been present. (I opted to postpone his PT eval for a few months.)
• Also present at the evaluation was the district’s school psychologist. This is standard practice.
• The evaluation determined what we all already knew would be the case: Wonderboy does qualify for speech therapy through the district.
• Today’s IEP meeting was scheduled. This took some coordinating, as there is a rather large team of folks involved. This is why I think it’s important for parents to do their homework—especially homeschooling parents, but really it applies to all of us. It can be intimidating to walk into a roomful of school-system professionals. They are there to help, and as parent, you are the person in charge; but it can be hard for parents to remember that.
The "team" of people at Wonderboy’s meeting will be: speech pathologist, school psychologist, traveling deaf/HH teacher, dedicated deaf/HH classroom teacher, and district audiologist (yay!!). I think that’s it. And me, of course—on this team, I’m the coach!
• After the IEP meeting was scheduled, I got calls from most of the folks on this team. I had short preliminary meetings with the traveling deaf/HOH teacher and the school psychologist.
• Which brings us up to today. I’ll let you know how it goes.
Yesterday’s speech evaluation went very well. Wonderboy was obligingly talkative, so the speech/language pathologist (we’ll call her the SLP) was able to get a good idea of the range of sounds he can make. She was delighted, really excited, about the extent of his expressive and receptive language—his sentences seemed to thrill her as much as they do me. Of course, she could not understand much of what he says; his intelligibility to strangers is maybe 80%. But by the end of the session, she was catching a lot more of his words.
I had all the girls with me, of course, and they set up camp with their books and drawing materials at a table in the same room. They proved most useful in keeping the boy chatting; every time the SLP tried to get him talking about an object, he picked it up and trotted around to show his sisters, addressing them each by name.
"I can see you’re a big help with your brother’s therapy," said the SLP, which is absolutely correct. As we were leaving, she actually thanked the girls on Wonderboy’s behalf. It was a great moment. You always wonder what public school employees are going to think about your homeschooling brood, and it’s nice to leave feeling like you made a good impression. I really think she grasped the tremendous impact on Wonderboy’s progress (in both speech and motor skills) made by the constant interaction with his sisters.
All four of them! He considers the baby his special charge; he is always looking out for her welfare, bringing her toys, putting a pillow behind her when she is sitting on the floor. At the evaluation, some of his clearest words were about Rilla and the stroller.
We talked about the scheduling challenges, and as Peggy suggested in yesterday’s comments, the SLP is eager to accomodate our needs. There’s one 8 a.m. small-group session that currently has only two children in it; since my girls can come and hang out on the other side of the partitioned room, we should be able to make it work without too much disruption to our schedule (such as it is).
Next step: the Goals meeting. This is where the SLP and I will sit down with the district audiologist and the district psychologist to draw up the language for Wonderboy’s IEP. It’s scheduled for January, after the school break. Until then, we’ll just keep on doing what we’re doing, which seems to be working!
