Category Archives: Special Needs Children

Unsolicited Signing Time Commercial

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:

It Must Be a Sign

Something Else to Buy Instead of Curriculum: Signing Time

Speech and Other Services: Schools or Medical?

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.

My Wonderboy

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 is mentally retarded.

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 word
"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 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 learned that the American Association on Mental Retardation renamed itself in 2006: it is now the American Association on Intellectual and Developmental Disabilities, and its preferred terminology for mental retardation is now "intellectually disabled."

That sounds so jargony to me. I can’t 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 Wonderboy’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 rattle off is, now, mental retardation. Which is
fine with me.

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

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

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." 🙂

Ain’t that the truth.

Good grief, somebody clean that kid’s glasses!

New York Set to Deny Special Services to Homeschoolers

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.

So I was glad to see that my college classmate Andrea has posted a letter to Governor Spitzer addressing her concerns about the NY Board of Regents and Department of Education’s reinterpretation of the federal IDEA law. Their recent ruling, if you haven’t heard, will deny free, public-school-provided special services like speech therapy and OT to homeschooled children in New York State. These services will continue to be available to children enrolled in public and private schools.

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.

Andrea speaks eloquently to the importance of such services:

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.

Hard-of-Hearing Kid Posts

Still trying to tidy up my archives. Here are the most substantive posts I’ve written about Wonderboy’s hearing loss:

The Speech Banana (hearing loss diagnosis)

Getting Ear Molds Made
(a photoessay)

Practicing for Hearing Tests
(games to help preschoolers in the sound booth)

Speech Therapy at Home

Visual Phonics

Newborn Hearing Test Advice

Sign Language (how awesome it is)

Learning ASL as a Family

Fun with FM
(heh heh)

Expressive and Receptive Language

The Speech Banana

This Lilting House post gets more search-engine hits than anything else I’ve written. Every week I am amazed by how many people land on my blog via a search for "speech banana" and related terms. I thought it might be helpful if I reposted it here. This post was written in June of 2006. More recent posts on related subjects can be found in the hearing loss archive, including a photo essay about getting ear molds for hearing aids and advice regarding the newborn hearing screen.

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.

He failed.

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. 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.)

I put some links in my sidebar for American Sign Language resources. 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.

*Audiogram image courtesy of