Category Archives: Special Needs Kids

Hearing Loss, Sign Language, Special Education, Special Needs Kids, Speech Delay, Wonderboy

Speech Therapy and Visual Phonics

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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!

Hearing Loss, Special Needs Kids, Wonderboy

Fun With Audiology: Making Ear Molds

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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.

Special Needs Kids

The Wait and the Wonder

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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.

Special Education, Special Needs Kids, Speech Delay, Wonderboy

The IEP Meeting

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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

Special Education, Special Needs Kids, Speech Delay, Wonderboy

Homeschoolers with Special Needs: Getting an IEP

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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.

Special Education, Special Needs Kids, Speech Delay, Wonderboy

Post-Eval Update

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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!

General Homeschooling, Hearing Loss, Special Education, Special Needs Kids, Speech Delay, Wonderboy

Homeschoolers and Special Education

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Today my ClubMom topics, homeschooling and special-needs kids, come together. I’m taking Wonderboy to our local public school—yes! I said public school!—for a meeting and evaluation with the special education office, a speech therapist, and the district audiologist. Even though we plan to home-educate this child like all our others, we can and will avail ourselves of the special services made available to all children according to federal law.

From birth to age three, qualifying children can receive services such as speech therapy, physical therapy, and occupational therapy through Early Intervention programs. Wonderboy received all of the above, in our home, beginning at about four months of age. (For PT & OT, that is. When his hearing loss was diagnosed months later, we added speech & hearing therapies.) The first step in the Early Intervention process is an evaluation that leads to the writing of a big ole document called an IFSP—an Individualized Family Service Plan.

At age three, children age out of Early Intervention and from that point on, the special services they qualify for come through the local public school district. The IFSP gives way to a new document, the IEP, or Individualized Education Plan. The IEP spells out what services the child requires and how the district is to go about answering the need. The whole IEP process can be tricky to navigate, or so I’ve picked up from several friends (public-schoolers, not homeschoolers) whose older children were diagnosed with learning disabilities or autism spectrum disorders. Those parents had to be sharp-witted advocates for their children to make sure that all their classroom needs were being met.

For us, it’s a bit simpler. Wonderboy "graduated" from PT before we left Virginia (amazing, amazing! miracle boy!), but he will almost certainly continue to need some speech therapy during the next several years. His verbal language skills are growing by leaps and bounds—really, it’s so exciting; he’s using long sentences now, like when I hollered "Ladies! Dinner’s ready in five minutes!" and he BOOKED down the hall shouting, "GIRLS! Time to eat! Dinner!" Excellent progress. But of course since he still lacks most consonants, it sounded more like "GUH! I oo ee! Ginnah!"

I want to make sure he has every advantage. I know his verbal skills will continue to improve naturally as he gets older. But he may need extra help to master certain sounds. And so after we got settled in here, I called the district spec ed office to see what kind of speech program they have. After a lot of faxing (his IFSP and audiology reports) and phone calls—just the normal process!—we set up an evaluation with the aforementioned folks.

Today we’ll be meeting to determine what goes into his IEP. I’m going to blog the process, because I haven’t found too much else out there about homeschoolers and IEPs. I might hold off on attending the speech therapy sessions until next fall, depending on how today’s eval goes. At Wonderboy’s age (he’ll be three this week!), speech therapy takes place in small parent-child sessions at the school up the road. That sounds great—but I can already see that timing will be tricky. I don’t know that I want to chop up a morning once a week with a jaunt to speech therapy. That’ll monkey with my older kids’ schedule.

But we can figure out the logistics later. Right now, step one: the speech evaluation.

Special Needs Kids

The Doctor Hunt Continues

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Don’t these people know they stand to make a lot of money off my family? Clearly no one in San Diego’s medical field is reading this blog. Humph.

(I must interrupt my own self to tell one of my MOST FAVORITE KID STORIES EVER. Rose was around three years old, and something, I no longer remember what, had disgruntled her. "Hmph," she remarked to the general public. No one responded. This was not to be borne. In a loud and steely tone she asserted: "ME SAY HUMPH!!")

Okay. Doctors. That office I talked to last week never called me back. I gave them a week, then called a second time. It was like starting over: got a different person on the phone, had to explain the whole thing again, kid is going to need ear molds in a month or two, audiologist has two-month wait for new appointments, won’t schedule appt without scrip from doctor. New Voice said the same thing last week’s Voice said: "I’ll have a nurse call you back."

Okey-doke. Time to try someone else. I go to our PPO’s website and pull up the list of local docs in the network. Big city, long list! I arrange it by proximity to our house and start dialing my way down the list. The following transcripts are not made up. After the second call, I started taking notes.

Medical office number one: Automated message. "You have reached the office of Dr. So-and-So. Our regular office hours are 8:30 a.m. to 5 p.m., Monday through Friday. If this is an emergency, please hang up and dial 911. Beeep!"

Check the clock: it’s 11:20 a.m.

Medical office number two: Recorded message. "If you need to reach a priest, press 1."

Huh? Hang up, check number, dial again.

"If you need to reach a priest, press 1."

All righty then.

Medical office number three: "Beep, boop, beeep! We’re sorry, you have reached a number that has been disconnected or is no longer in service. If you think you have reached this number in error, please hang up and try again."

Hang up, check number, dial again.

"Beep, boop, beeep! We’re sorry…"

Mutter, mutter, grumble.

If this keeps up, I WILL need to call a priest. To make an appointment for Confession. These rassafrassin doctors’ offices are generating some mighty uncharitable thoughts.

Medical office number four: "You have reached the offices of the Thus-and-such Medical Group. Our office is closed for lunch between twelve and one p.m. Please do not leave a message on the voice mail. If this is a life- or limb-threatening emergency, please hang up the phone and dial 911."

Me say humph.

Hearing Loss, Special Needs Kids, Speech Delay

My Other Part-Time Job

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If I earned a wage for all the hours I’ve clocked on my kids’ medical issues, well…I’d be a case manager, not a mother. But I’d also be rich.

I spent this first month in California shoving to the back of my mind a looming dread  over the necessity of Finding New Doctors. Oh, how this pains me. We had the most fabulous family practice back in Virginia. Excellent and attentive doctors, compassionate and capable office staff, kind nurses. I loved everyone there, really loved them! Even the lab tech who took my blood. I miss her. I miss the whole gang. Thanks to Wonderboy, we spent so much time in their offices we might as well have kept extra toothbrushes there.

Best of all, oh so marvelous, was Dr. H., whose name I’d like to shout all over the internet but if I did her phone would never stop ringing because SHE MADE HOUSE CALLS. She was the doctor I’d been looking for my whole life, or at least since Jane got sick in 97. Scott and I used to sit in the hospital lamenting the fact that no one in our families had married a doctor, because we could have really really used one in the family, someone to call up and say "Listen, there’s This New Weird Thing going on—do I haaave to haul the kid into the office? Or can this just be a wait and see?"

And then Dr. H. walked into our lives—through our front door!—and I swear I was like a sixth-grader all over again. Hi, you’re so awesome, will you be my best friend?

You want to know how awesome? When I told her I was going to be driving all five kids to California by myself, SHE OFFERED TO FLY WITH ME INSTEAD.

I almost took her up on it, but I was afraid I might accidentally lock her up in a secret room in our house and never never let her go. And she has kids of her own who need her. Humph. So when the time came, I hugged her goodbye and bawled like a baby all over her stethoscope.

And here I am, poring over our new provider directory, cowering at the thought of starting all over with some stranger. It’s like dating again after a bad breakup.

There really ought to be an eHarmony for finding doctors.

One pediatric practice here was highly recommended by several of our new friends. I took a deep breath and made the call, which felt like going on a blind date. Nice voice on the phone says that yes, they are taking new patients but the first available well-child appointments are in January.

I’m fine with that, as long as they’ll see us before then if someone gets sick. I’ve been burned this way before—some docs won’t see you for sick visits unless you’re already a patient. But these folks say, nope, not a problem, if someone gets sick we’ll get you in right away.

So, okay, it’s a start.

BUT. My next question was about finding an audiologist for Wonderboy. He needs new ear molds for his hearing aids about every six months. The current pair was made in late June. Already they’re getting a little loose; he’ll need a new pair in Jan or Feb for sure. And I know how these things work. We’ll have to have the new-patient visit to the audiologist too, with hearing tests, and then they’ll probably have us come back a second time to get the ear molds made. And then it’ll take a few weeks for the new molds to come in. Time, time, it all takes time. I’m an experienced case manager now and I know you have to anticipate the patient’s needs.

So the new pediatrician’s office recommended an audiologist. But THAT office says there’s a two-month wait for new-patient appointments there, too. And also? They can’t make an appointment for Wonderboy without a prescription from his pediatrician.

Me: "A prescription? Do you mean a referral? We have a PPO now; we don’t need specialist referrals as long as they’re in the network. Which you are."

Audiology office: "No, a prescription. For a hearing test."

Ohhhhkay. Right. Because, you know, there’s such a black market for hearing tests. Hearing test abuse, it’s a real problem in urban centers. Especially among three-year-olds. Their mothers are always trying to sneak in preschoolers with perfect hearing just to get a quick buzz off those intoxicating beeps and clicks.

I called the pediatrician’s office back. I told Scott it was a test: how they respond to this situation will give me a good idea of what has the upper hand in their practice: human need or red tape.

The first person I spoke with scored well. When I explained that I can’t wait until January (when our new-patient appointment is scheduled) to get the prescription because then it will be MARCH before the audiologist can see us, and probably APRIL at the earliest before we get new ear molds, and even though Wonderboy doesn’t need new molds now, he will certainly need them before April—when I (gasp, pant) explained all this, the Unnamed Office Person on the phone totally understood the problem. She took all our info and said she’ll have a nurse call back.

So now I’m waiting for round two. Meanwhile, I keep finding myself staring at the phone, with Dr. H’s number on the tips of my fingers. Chill out, I tell myself. They have good doctors in California too. I might call her anyway, because now that she’s officially not our doctor anymore, I am totally latching onto her claiming her as a friend. And if she ever does fly out here for a visit I promise not to make her give us all checkups.

Special Needs Kids

A Sobering Thought

4 Comments

Please read Moreena’s post about organ donation today. She writes:

Remember Jackson? I mentioned him in this post. (And I was wrong about his parents not having a webpage. Here it is.)
Last month his mother donated a portion of her liver to him, but
unfortunately he contracted a serious fungal infection in the hospital
that is quickly destroying his new liver. As of his mom’s last update,
the doctors only give him a 10% chance of survival without a new liver,
and soon.

I’m not sure what’s going on right now, but I know that there have
been an awful lot of very sick children that are dying still waiting
for donated organs.

Moreena goes on to make a passionate plea for people to consider signing up to be organ donors. I strongly encourage you to read up on this matter and give it your serious consideration. For Catholics who may be uncertain about the Church’s position on organ donation, here is what the CCC says:

2296 Organ transplants
are in conformity with the moral law if the physical and psychological
dangers and risks to the donor are proportionate to the good that is
sought for the recipient. Organ donation after death is a noble and
meritorous act and is to be encouraged as an expression of generous
solidarity. It is not morally acceptable if the donor or his proxy has
not given explicit consent. Moreover, it is not morally admissible
directly to bring about the disabling mutilation or death of a human
being, even in order to delay the death of other persons.

My Jane is alive today because people donated their blood. (She had fifteen blood transfusions, including two complete blood exchanges, as well as so many platelet transfusions that I lost count.) She did not need a bone marrow transplant, thank God, which is a very good thing because when our hospital ran a check in the national bone marrow registry, they only came up with a single preliminary match. A very small percentage of preliminary matches turns out to be an actual match.  She had no siblings at the time and was not a good candidate for an autologous transplant (a procedure in which the patient’s own bone marrow is extracted and cleaned of cancerous cells, then used for the transplant).

Bone marrow, like blood, is donated by living people. Even so, the marrow registry suffers a continual shortage of donors. Is that because people are hesitant to get involved, or because most folks just don’t think about it? I’m guessing the latter. And I think that goes even more for organ donation, because in order to make a decision about that, you have to contemplate your own death. None of us wants to do that.

Life is busy, and so often issues like this just whisk past us like signposts outside a car window. You catch a glimpse as you zoom past, and you think about how someday you really intend to come back and read that sign, visit that landmark. Should I stop now? No, the baby’s asleep in the backseat, and anyway, we’ve got to get moving if we’re going to get to the next hotel before dark.

Donor
Today, Moreena is asking all of us to pull over to the side of the road and read that signpost. If you haven’t indicated to your loved ones that you want to be an organ donor after your death, please consider doing so.

You may be choosing life for a child like Jackson.

For more information, visit shareyourlife.org.

Postscript: This morning I learned from Moreena that Jackson passed away on Saturday. Our prayers are with his family. He was at the top of the transplant list when he died.