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Viewing: Blog Posts Tagged with: Speech Delay, Most Recent at Top [Help]
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1. 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

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2. Speech or 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.

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3. Reprise: The Speech Banana

Originally posted in June 2006.

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.”

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.

Boy1But Wonderboy’s verbal speech is only part of the picture. His actual vocabulary is enormous, thanks to sign language. We are huge fans of the Signing Time DVDs. He uses a combination of sign and speech; we all do. Although it appears he will be primarily a verbal person as he gets older, sign language will always be an important second language for him. Hearing aids, incredible as the technology is nowadays, don’t do you any good at the swimming pool. Just for instance.

Hard of hearing. It used to be a phrase that conjured up in my mind the image of a grizzled old man with an ear trumpet. What? What’d ye say? Speak up, lad! (Apparently he is a grizzled old Scotsman.) Now it applies to my son. Words pop up on a TV screen, “closed captioned for the deaf and hard of hearing,” and I’ll give a little mental jump: Oh! That means Wonderboy!

Watching our children learn to speak is one of the great delights of parenthood. We mothers tend to collect their funny pronunciations, their experimentation with the meanings of words. This time around, my joy has been doubled, for I get to see communication unfold in two languages. His funny little toddler signs are just as endearing as any “helidopter” or “oapymeal” ever uttered by a two-year-old. (”Oapymeal” was one of Jane’s. It meant oatmeal. I served it often just to hear her say it.)

There are some links to American Sign Language resources in the sidebar of my old site. (I’ll set up a page here soon as I get a chance.) I can’t say enough about the wonders and benefits of ASL, not just for deaf and hard of hearing children, but for all babies and toddlers, especially those with any type of speech delay. ASL is a beautiful, nuanced language, a visual poetry. I count myself privileged to have been put in the way of learning it. Jane is determined to certify as an interpreter someday, and I have to admit I’m a little jealous. I wish I’d learned at her age.

Wonderboy makes a fist and touches a knuckle to his cheek, wiggling the hand. “Ah-hul!” he shouts. Apple, in two languages. The speech banana? We’ll get there, one way or another.

*Audiogram image courtesy of GoHear.org.

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4. Trisha’s February non-fiction reading


Even when I was a teen, I’m not sure I read any YA non-fiction, preferring adult non-fiction instead. Since one of my reading resolutions for this year was to read more non-fiction, I thought I should also make an effort to read more YA non-fiction. So I borrowed a couple of acclaimed YA non-fiction books, Invisible Allies and the second edition of Invisible Enemies, both by Jeanette Farrell, and An American Plague by Jim Murphy. I also borrowed two adult books, The Ghost Map by Steven Johnson and The Spirit Catches You and You Fall Down by Anne Fadiman, that I had long been meaning to read. While all five books have their merits individually, I think I got more out of each book by reading them as a group. I’m not sure if I consciously chose to borrow these books as a group because I suspected they’d work so well together or simply because they were the first non-fiction books that came to mind. In any case, the first four books all deal with the effects of culture and the movement of people around the world on medical issues, particularly those related to public health, some more explicitly than others.

~really long, so click below to read the rest~


cover of Invisible EnemiesIn Invisible Enemies, Jeanette Farrell tells the stories of seven infectious diseases (smallpox, the plague, leprosy, tuberculosis, malaria, cholera, and AIDS) and their effect on people. She begins by discussing medical beliefs in historical times, then focuses on one disease per chapter, describing the microbe that causes the disease, the disease in history, attempts at treatment (basically, completely misguided prior to the acceptance of germ theory), the identification of the cause of the disease, efforts to contain or eradicate the disease, and the current state of the disease. Due to this format, Farrell does not have much space to explore each disease in depth, but she still manages to write with clarity, engaging readers while conveying a lot of information. However, what especially interested me were the differences between this book, which I read first, and those by Johnson and Murphy.

Cholera has existed in the Indian subcontinent for over 2,000 years. However, it was not until the early 19th century that a cholera epidemic hit British soldiers in India and eventually spread around the world. Farrell devotes several pages in Invisible Enemies‘ chapter on cholera to London’s cholera outbreak of 1854 and the man who traced it to a water pump on Broad Street. It’s the most epidemiological part of the entire book, and as there is something about epidemiology that I find extremely fascinating, I was glad that I had already borrowed Steven Johnson’s The Ghost Map.

cover of The Ghost Map by Steven JohnsonThe Ghost Map is ostensibly about the aforementioned cholera outbreak and the two men who discovered its root. However, the scope of the book is wide, since part of Johnson’s framework is that one must understand how the era, and the common beliefs of the time, came to be, in order to understand why John Snow and Henry Whitehead were the right men to investigate the cause of this particular outbreak of cholera.

Snow was a doctor of some acclaim for his study of and medical practice concerning the use of gases for anesthesia. But he also had an interest in other medical issues, and eventually turned his attention to cholera. Whitehead was an Anglican reverend whose intimate knowledge of the Golden Square community, the epicenter of the outbreak, enabled him to work in conjunction with Snow and to ultimately identify the first person who became ill in this particular outbreak. Unfortunately, according to Johnson, Whitehead’s role in the investigation is often minimized or simply overlooked; he is not mentioned in Farrell’s account at all. (Also, while Farrell credits the Broad Street pump with starting Snow’s investigation of the companies supplying piped water to London’s homes, as Johnson shows, Snow was convinced that cholera was spread via water and was already collecting statistics on cholera victims and the water companies that supplied their homes with water. He saw the Broad Street outbreak as another means of discrediting the miasma theory, which blamed sicknesses such as cholera on foul air, and those who considered cholera among the lower classes a sign of their inferiority.) Much of the book, the parts I found most interesting, discusses the growth of London and the epidemiological investigation. It’s when Johnson becomes a futurist and starts discussing urbanism, the possibility of pandemics, and terrorist attacks that I became bored.

cover of An American Plague by Jim MurphyThe titular American plague of Jim Murphy’s book is Philadelphia’s outbreak of yellow fever in 1793. (Not to be confused with the Memphis outbreak in 1878, the subject of Molly Caldwell Crosby’s The American Plague.) Whether or not you’ve read Laurie Halse Anderson’s Fever 1793, Murphy’s book makes for fascinating reading, especially with Paraguay’s current outbreak of yellow fever hitting the news.

Philadelphia had already been hit hard by several different diseases in 1793. When people began dying in late summer, sharing the same horrific symptoms (Murphy identifies a sailor as one of the first, if not the first, persons to die of yellow fever, and later says water casks on ships were the perfect method for transporting yellow fever-carrying mosquitoes), many doctors did not believe that the culprit was yellow fever. Yellow fever was among the most feared diseases of the era, and Murphy, using numerous primary sources, writes of various “remedies” for yellow fever and how these attempts at curing were based on the beliefs of the period. He also shows the far-reaching effects of this particular outbreak on American history and government. Like The Ghost Map, implicit in Murphy’s narrative is the belief that the outbreak—why it occurred, peoples responses to it, and attempts at ending it—cannot be separated from the events and medical theory of the period. The historical context is essential to understanding the outbreak, and to look at cholera in 1854 London or yellow fever in 1793 Philadelphia without noting this context is to not fully comprehend a diseases causes or effects.

(Sidenote that may be of interest only to me: Murphy and Farrell differ in their very brief mentions of the failure of DDT in the campaigns exterminate the mosquitoes responsible for spreading yellow fever and malaria, respectively. Farrell focuses on the effect of DDT on the food chain—DDT was also ingested by roaches, which were eaten by lizards, which became sick, thereby sickening the cats who ate the lizards, etc.—and the evolution of DDT-resistant mosquitoes. Murphy discusses the lack of funding to fully eradicate the disease-bearing mosquitoes as well as the “concern about health risks and environmental problems associated with the use of DDT,” specifically mentioning Rachel Carson’s Silent Spring as well as her prediction that DDT would only worsen the problem by creating mosquitoes resistant to DDT and other pesticides.)

Reading these books, you can see how, as trade goods and people began moving rapidly around the world, so did sickness and disease. Unlike the above books, the subject of Anne Fadiman’s The Spirit Catches You and You Fall Down is notcover of The Spirit Catches You and You Fall Down microbes or epidemics, but the treatment of young epileptic girl. Still, like the Johnson and Murphy books, understanding culture is essential to understanding how and why this particular situation arose. Plus, it could not have occurred if the world was not shrinking and people did not have the ability to move halfway around the world in a relatively short (evolutionarily speaking) amount of time.

Of course, epilepsy is the Western diagnosis. For the parents of Lia Lee, Hmong immigrants, it is obvious that the correct diagnosis is quag dab peg, “the spirit catches you and you fall down.” While Hmong know that quag dab peg can be dangerous, it could also have been seen as a blessing, since “Hmong epileptics often become shamans.” When one of Lia’s seizures scared her parents enough to send them to the emergency room of the county hospital, it led to a series of confrontations between Lia’s parents and the doctors and social service providers who all thought they were acting with Lia’s best interests at heart. The doctors prescribed medicines, the Lees thought the medicine was making Lia sick, the doctors were unable to convey the Lees why they must give Lia Western medicines, the Lees continued to try to heal Lia with traditional methods, and so on. Both sides were unable to communicate with the other due to linguistic and, most importantly, cultural barriers. Fadiman writes gracefully and sympathetically about a very difficult situation, and if you read just one of these books, make it The Spirit Catches You and You Fall Down.*

cover of Invisible Allies by Jeanette FarrellI suppose Farrell’s Invisible Allies is the odd book of the bunch, since it examines the many ways microbes benefit humans. Following the same format as Invisble Enemies, Farrell looks at just a few of the millions of microbes that are beneficial to humans. These advantageous microbes dwarf the number that are dangerous to humans, and the ones that Farrell discusses here all happen to be at least partly related to food production and consumption (cheese, bread, chocolate, and the microbes in our intestinal tracts, and the final chapter which focuses on sewage and cleaning polluted waters). It’s easy to think of the negative effects of microbes on our lives, making this book an intriguing, if sometimes slightly disgusting, look at how we benefit from them.

* Also, it so clearly and devastatingly shows how certain values and aspects of belief systems are not universal. Schools and public libraries must also deal with cultural clashes, not to the same potentially harmful effect, obviously. But as some of our libraries are increasingly patronized by immigrants, I think it’s important to keep in mind that publicly funded institutions such as public schools and libraries may (literally) be foreign concepts and that other conceptions of property and group ownership may differ from what we value as American public service providers. Okay, off my soapbox now. On another note, it does have teen appeal, especially for those considering entering a medical field. I was reminded that I wanted to read this book after noticing that one of my teens had requested it from another library.

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