Event ID: 1713771
Event Started: 3/16/2011 1:00:07 PM ET
Please stand by for realtime captioning.
Okay. Good morning, everybody. This is John Harding with NCDB, and I have the pleasure of introducing your speakers today. Before I do so, I just want to issue a few reminders for those of you who would like to ask questions, the best way to do that for this web isn't it true is to post your -- is to post your question in the chott pod at the lower left part of your screen. We'll hold the questions at the presenter's question until the end of the session and we'll leave time to answer questions. If you are afraid you'll forget them, post them, and we'll come back to them or at the appropriate time you can unmute your phone by pressing star 6 and asking your question. If you have technical problems contact Randy the same way, vee at chat pod and we are recording this so you you have staff that would like to view it later, it will be available.
The purpose of the webinar is to provide an overview of the center's current studies on cochlear implantation with children who are deaf-blind and provide information to help service providers gain an understanding of Poe fecial outcomes and the need for specialized intervention. It is a pleasure to welcome back CAT Stremel. She was our former director here at NCDB, and I believe she is joining us from the beautiful state of Kansas and Mark Schalock is with teaching research institute in Monmouth, Oregon, so I will turn it over to Mark and Kat. Welcome.
Hello. This is K AT. I am unmuted. First of all of our cochlear implant project, we like to thank NCDB for the opportunity to share our work with you. We're very excited, and as John mentioned, we'll be talking about influencing outcomes for children who are deaf-blind with cochlear implant, and today we'll be focusing on re research studies, the findings and some of the initial implications that we are finding.
Again, our project is a stepping stone project funded by the US Department of Education, office of special education, the technology and media services. We're very fortunate to have Marion McDermott as our project officer.
We are a three-year project, and we are currently in the third year of our project. Where as Mark and I are presenting today, the project staff at TRI -- I have no idea why we have a noon whistle here but anyway, also includes Bernie samples, and we wish Bernie a happy birthday today. Peggy Malloy, Cindy Mafis, and Shelby Morgan is our stoont worker who does a fantastic job and one of the parents of a child who is on our advisory board, Lynn GES serves as our project manager for our parent listserv and as well as for our website. We are very fortunate to have East Carolina University and Dr. Susan Bashinski as a partner and Cincinnati children's hospital and medical center and Susan Wiley and CC Ruder are very involved from the wonderful state of Ohio.
Several years ago someone from the deaf-blind project said, Kat, you're leaving NCDB because you love research. Now, Mark may love research, but I said, no, it is not the research, I love the intervention. It is the children that it is all about. Just a short story here. This little girl with charge syndrome had a by lateral collapse, 18 surgeries but when I was evaluated her just this past October, on one of the items on the assessment the item says the bunch of objects in front of her, something like take the two big pencils and put them in the box. She thought and she said, pretty articulate, why don't I take one of the pencils and put it in the big box and keep the other one so I can write with it?
While not all of the children are making that kind of progress by a long shot, I think all of us who work with children with by lateral profound losses and other disabilities know that many of these children would not be where they are today without their cochlear implant.
Other children were not seeing as great a benefit, but that kind of leads us into our acknowledgment, a little like the Oscar here with Mark and I. We really couldn't have this project without the children and their parents who continue to participate in the study. We also wish to thank the many deaf-blind projects as well as a lot of private consultants who continue to assist us with the research that children are still being assessed continually, and some of them are in the intervention phase as well. I also should have put on here our advisory committee is very active, and we also have consultants, private consultants in research and evaluation who are working with us.
I think our project has so benefited from the strong community of practice from the deaf-blind projects. The children who are currently in our studies on this grant represent 26 states plus Washington, D.C., and I think that is amazing that any project could have the advantage of having so many states work with the kids or refer them to our project in different ways.
The majority of participants for the children are from Kansas, Ohio, North North Carolina, Oklahoma, Missouri, Maryland, Illinois has a majority but every state up here at at least one child. Many have two, three and four that are participating, so we do really wish to thank you.
There are three -- I am trying to use a pointer, Randy. It disappears when I take it up there.
Try clicking and that should make it appear.
Okay. I can't use a pointer. We're going to discuss the three major phases of our project, the first is research, and that of course is the focus of today's webinar, but in addition to that, we also are looking at research to practice that includes our intervention strategies, and again practice to technical assistance and trainings. As we go in and implement our interventions with early intervention teams, with the caregivers, directly in the homes, or in the preschool settings, we're looking at the most effective methods in which to teach caregivers the intervention strategies, so it in fact builds upon itself there.
Hopefully today's webinar will leave you as participants with a better understanding of who these children are, the demographics for children with deaf-blindness who receive cochlear implants and again our project goes from date of implant or preimplant eligible for implant to age eight years. We'll use some of the older children in the first C I study when we look more directly at the benefits of age of implant, but we have not really looked at bringing those older children in yet.
Mark will be talking more about the preliminary findings of the constituted and I we show data with the children's Charge syndrome as a special population and we'll talk more about the challenges for the family and again the implications of the findings for both families and service providers. Again, I would like to remind everybody that we're still constantly getting new children in. We're doing multiple assessments. Our data changes daily, so Mark is continually analyzing the data, so the results will change as we conduct more assessments, as more children move into to participate with us. Just for some information here, I took some data from the 2009 national child count which all of you are very familiar with, I am sure, and for those of who you don't have it memorized, there are approximately 9,200 children identified as deaf-blind in 2009. All of those children over 4,000 have a marked, severe, severe profound sense oral hearing loss and I think it is important because the implication for the future. Children with less severe hearing loss are being implanted again at younger ages, so I think all of you who are out there working directly with children are going to see an increase in this number from 581 because you can see the potential across the years. Ant all of those -- not all of those children will be eligible or implanted, but I think we do see it is an ever growing number. We're also seeing an impact on the children with bilateral implants. More and more children are receiving bilateral implants as well.
We have two overall outcomes of our project. I hope this isn't boring to you but the first is to collect data on the outcome and related factors for children who are deaf-blind with cochlear implants so that parents can make more informed decisions. We found when we really wrote the first CI grant there was very, very little data that included children with vision impairments or even other disabilities, so we felt like how can parents who have children with multiple disabilities in addition to hearing loss make informed choices.
Some of the therapies that aren vogue for typical children who are deaf may not be the best for children that have multiple disabilities. I think that was a critical point that we would look at. As a result of the first cochlear implant project we also felt that very -- a lot of children, many, many could probably make more progress than they were actually making because either they didn't have intervention, they didn't have appropriate intervention, parents expected miracles, and I am sure as a parent I would expect miracles, so, but we really felt that we as a field could do more to improve the outcomes with more appropriate intervention.
Primarily there are three research studies that are involved in our project. The first is Study A, what effect does age at implant and hearing age have on child outcomes? We also collect enough data that Mark will also be analyzing the data in terms of what impact does the severity of the vision impairment, what effect is cognition have on outcomes as well, so Mark will talk a little bit about the outcomes for Study A.
Study B, again, as we were in homes and classrooms, we were amazed that sometimes we saw teachers talking to the child or not talking rather before the implant and even after the implant. They may talk very little or they may sign without speech, and it is like, this is interesting, let's look at if there in fact is a significant difference in the way both teachers and caregivers talk to their children before implant and after implant taigs.
We're just looking at caregivers and using the lean device which Mark will talk more about to collect the date A this is my love, Study C. This is one of the effects of individualized interventions carried out by the caregivers and other service providers post implant in routines and natural environments, and of this study is in progress and I will talk a little bit more about this study at the end of the webinar.
Children who are deaf-blind with cochlear implants, who are they? What do we know about them? Again, sharing how many children are participating in the study, in the grant, if Mary Ann McDermott is joining us here, we indicated that we would identify 50 children post implant and 20 children preimplant to be involved and we'll share really where we are now. Talking a little bit about who are these children, what are the demographics for these children as well. I do want to point out as Mark shows data to remember for some of those identified and referred to our project some of these children were wearing hearing aids and maybe benefiting a little bit and they had -- so their progress may have been very inconsistent, so not all children were totally without any hearing at all and some of the data I think reflects that because I said, Mark, who is this child? Why are they hired? Do they have progressive loss, so we're always asking questions as well.
I think this youngster is wearing a hearing aid on the other ear. I think it says these kids are so individualized, this little child has a med L device. I think only one or two children have a med L device. Again, this brings in so many different variables as we're analyzing the data, so I think it is so critical for even children who are typically children with deafness, the researchers in that area are finding tremendous variability.
They also are in the majority of research studies that involve age of implant are finding significant variables and factors in terms of the earlier children are implanted, the more positive the outcomes across time. Of course dure rage -- duration, time and sound is also an important factor. Let's look a little bit at who are our children and what are our numbers and how many assessments do we have on them?
Very exciting things here. If you look in the left column, the status, many deaf-blind projects and even some of the implant centers who are participating with us referred the children only once they're implanted, so we call those our post CI children. Those children already have the implant before we do the first assessment or more than two months after they're mapped.
Then again we have the preimplant children here. These are children who in fact are referred to us once they're eligible or the state projects it looks like they're going to be eligible, and we don't miss a beat here. We take them even if eligibility then is later denied, so we do have pre-assessments on them.
So, again, some of the children I think it was Illinois, Michelle, is it was three years before that child was actually implanted so we tried to do multiple assessments preimplant so we would have more effective data to see where that child was prior to being implanted. The prepost conditions are children who were identified preimplant but the post means they have now been implanted and we have assessment data on those children.
As you can see if we look at the total, we have 102 children overall, 67 post implant, 16 are pre-CIand hopefully that will change two or three. We know we have a number of children coming up for implant dates, although that changes sometimes, and again we appreciate the state and consultants keeping us updated like we thought he was going to be implanted in June, it is now going to be September it looks like, so, again, this number is going to increase for us as well.
Let's look at some of the other factors. If we look at the left-hand column, the vision impairment and stat us and type and severity. The majority children 28% are low vision, and 27% legally blind, and again light perception, totally blind, approximately 3% -- 13%, and CVI, 16%, and some have combinations of impairment in conjunction with CVI. Very few children are diagnosed with progressive loss and again we have children with variations in field loss, and again part of this is probably because if we look at the etiology of the children this shift add cross the last two years. Complications of pre maturity used to be the highest one and now we have children with charge syndrome at 26.5%, and again some of these children that were referred early I think we have three or four children, ended up because of other complications in the facial nerve and actually the status of their auditory nerve and the coke leer not being able to be implanted.
And the third, Peggy Malloy is in the process of writing up a story with a child with CMV, so that should be on the website soon. You will see a variety of different conditions or etiologies that make up the remaining demographics for our children.
I think, too, that the other challenges are probably fairly much many convert and parallel the national child count data to some degree in that 58.7% have physical challenges, 55.9 have cognitive challenges and Mosley we measure these, Dr. Susan WFIly is a -- Wiley is a developmental pediatrician and we're looking at sexry motor behaviors to really define some of the cognitive challenges.
Even for as young as our population is, we have 20.6% that have behavioral challenges and the highest with 63.7 complex healthcare needs and a number have traiks and quite a few are tube Fed and some are coming off of that and being Fed, but we have participants that have other multiple disabilities.
One of the things that I think surprised me when we look at the range of when children were implanted or what we call the age of implant, they range from six months possibly because of meningitis up to six years, and again there is a note at the bottom that these participants range up to eight years at the time at the joined our research study. Again, 14 being implanted at twelve months or younger, I think is fairly significant for our population.
The majority of our kids are implanted before three years of age. I think we have seen this shift from one of CI grant to the other in that we're seeing kids being implanted at younger and younger ages. Again, probably based on some of the age of implant data with typical children with deafness who have implants.
Again, time and sound, a fairly critical variable for many children and even adults being implanted. Again, the range is from two months to five years in terms of how long children who have had their implants, how long they have been in sound, and 20 have twelve months or less and you can see we have our largest numbers across the range and 26 over four years or 48 months in time in sound, so again our variables can play with one another, too, because some of our youngest children have not had that much time in tanned.
The research studies, the first one, again, is what effect is age of implant and hearing age or duration of sound have on child outcomes? Mark will talk a little about cognition and maybe other variables, and we will be analyzing the data at the end of the project to look at other variables as well, bilateral implants, the effects of the child wearing or not wearing implants. Again, we have 86 children currently in the study.We're using a longitudinal design with repeated measure as cross time. We're also basing outcomes or results a battery of assessments. These assessments have been selected to in fact examine a variety of domains. Most of these domains are targeted or focused on perception, early receptive and expressive language and communication but also include social adaptive behaviors, daily life skills as well and again based in Nebraska, right now the zincin scales were selected to be used with our population since they're validated for children with low vision and blindness.
Again, the assessments are repeated across time. Again, depending on whether the child is post implant or preimplant and if they're in intervention. The children, we try very hard with Bernie at red flagging and letting us know when the assessments in fact are due which is a management fete in and of itself. The children are assessed at least annually. Again, many private consultants, state projects, assist us with this. The assessment battery that we use in repeated measures involves the behavior scales, developmental profile, and this assessment, especially is focused on early social adaptive interactive turn taking types of behaviors, very early functions of behaviors and also includes some of the ( indiscernible ) behaviors, child's use of gestures and very early receptive and expressive verbal vocabulary.
The McArthur Bates communicative developmental scale inventories, the W&G stands for the words and jesh you'res, two different assessments, and the words and sentences. I think the early one, words and gestures has almost 400 vow cab lower words, -- vow vocabulary words and words is sentences includes about 600.
This assessment is validated to use with sign language. We collect data on verbal and sign, receptive and press sigh. Look at the child's vow vocabulary group across time. These are reported through parents report. The Reynellzinkin is administered by ourselves or consultants. It may include a few questions to parents on like if a child or dressing or not falling down the stairs or how they're going upstairs but it includes seven subscales, some are direct administration of assessment so you put three objects out and you verbally say the name of the object so the child has to follow directions verbally or speech and they have to identify objects and then it gets more difficult, and it goes up to age 16 months, so the majority of our kids, there is a few kids that have really ceilinged out of that assessment, but majority of our children it is appropriate for.
Of course then auditory perception which we assess by the it mays or Maze, infant toddler meaningful integration scale. Parents respond to questions on a four point scale across ten questions on how the children are responding to sound in the natural environment, and then we also look at the speech and intel jibility. Again, I will now turn it over to Mark, unmute, turn my camera off and I think we're ready to go, Mark.
Can you hear me?
Yes, Mark, we hear you clearly. Thanks.
Good.Well, good morning, good afternoon, wherever you may be. Jim, I have read your question down there. We will get to that later on. I will have to go into the database to get the exact number. So what I am going to do for the next little bit is to present some findings to date and they do change. We're getting new assessments in on kids weekly, so the database is a fluid thing.
Look at response to sound and receptive language as well as vocalization and expressive language as measured by the Reynell hitch Zinkin against the big questions or variables, time in sound, and age at assessment. What dial is show graphs. I am going to say right offhand that right at the start that the results are very similar for both receptive and expressive language, and so I will probably spend a little bit more time on the receptive language just because the results are so similar. I will certainly discuss the expressive language as well.
I don't know how well you can see this graph. I can't see it very well on my screen, but let me tell you what you're looking at. These are the most recent post implant assessment scores for response to sound, and across the bottom are the age at implant, which you see will range from six months to 72 months. Along the vertical axis is 0 to 36, and that's the raw score scale for response to sound T can range from 0 to 36.
You can eyeball that and see that there is not much of a relationship. The correlation is very low, and that in itself is kind of an important finding. Many of the studies with typically developing deaf children are finding that age at implant does have a pretty significant relationship on outcomes, but we're not finding that yet in our data. That is one of the reasons why we'll be bringing in data from the older kids as well to see if we stretch out that age range a bit that we do in fact start to find some relationships.
Okay. The next graph is instead of age at implant, this represents hearing aids or how long the child has been in sound at the time of this last assessment. Just eyeballing it, you wouldn't think there was much of a relationship there, but in fact the correlation is significant and though it is a weak relationship. We can only really account for about 8% of the variance in these scores using time and sound. Not a strong relationship.
This final slide here shows the relationship between age at the most recent assessment and response to sound, and again it doesn't look like there is much of a relationship there, and it is a weak one, but the correlation is in fact statistically significant. All right, but what happens over time? That's the important question. This first graph here shows scores across time, post implant, for kids who are implanted at 20 months or younger.
A couple things to point out here. First of all, if you look at this, if you make out what you're looking at, half the kids really demonstrate a consistent progress across time in terms of response to sound, and in fact all the kids, I believe, all but one child, I guess, or two kids, do in fact demonstrate positive growth from the first post implant assessment to their last post implant assessment. That's good news.
When we look at the same graph for kids implanted later than 20 months, very similar pattern. Again, almost half of the kids demonstrate a very consistent pattern of growth in terms of receptive language from the first to the last assessment assessment. All but one of the children demonstrate a positive change from their first to their last assessment.
It is these type of examples that really make you want to dig deeper into the data and find out more about these kids. Why is it that this child actually had a higher score in their first assessment than they had in their most recent assessment?
Okay. What happens pre-to post implant? We have broken the group into two, and we have used 24 months which is a pretty common dichotomy in terms of age at implant to look at what happens from pre- to post implant. There is not a lot of difference between the two groups that we can see. About two-thirds of the kids demonstrate really consistent improvement from pre- to post and all certainly show -- all but one, I guess, show improvement pre- to post, so some of the scores are not real stable. Here is an example where it is not stable growth. There is another one.
This one right here is an anomoly. We need to go back and look more closely because we wouldn't expect that a child would score that high on the preimplant assessment. Now, I have to say that that preimplant assessment was actually taken within a month or two after receiving the implant but before mapping and other things, so we consider it a preimplant.
Okay. So what do we know so far about receptive language? Well, it surprised us, but we're not finding really much of any relationship between age at implant and receptive language. We are finding statistically significant but weak relationships between time and sound or hearing age and age at assessment and receptive language.
When we look at developmental age or cognitive level, we do see a very strong relationship. In fact, correlation of above .6 where we're really able to explain 40% of the variance in the outcomes that we're looking at, powerful correlate. We're finding significant differences between kids with bilateral implants versus just union I lateral implants, and they're doing much better better. We're not yet seeing a relationship between vision and outcomes, and this one is frankly a big surprise, maybe just because we don't have a great measure of it, but we're not finding strong relationship between consistency of use and wearing of the implant and outcomes. I think that's just an artifact of the measure we're using. I don't think it is working very well.
Bottom line, though, is kids, receptive language doesn't prove significantly over time post implant. Large changes statistically significant changes, and we're also seeing that from pre- to post implant, so that is good news. Now I want to look at vocalization and expressive language, and I could just say did it owe pretty much -- Ditto pretty much, and you would know what these results are. Again, not much of a relationship between age at implant and vocalization and expressive language scores, correlation of point A, just not very strong.
Statistically significant, though weak relationship between hearing age or time and sound and vocalization and expressive language.And weak and ( indiscernible ) significant relationship between age at assessment and vocalization and expressive language. Just essentially the same results as for receptive language.
When we look at what happens over time, though, we also get the same positive results. These are for kids who are implanted younger than 20 months. Again, half of these kids demonstrate consistent patterns of improvement over time from the first post implant to the last implant assessment.
All of the kids I believe demonstrate growth from the first implant or the first assessment to the last and in fact if you look at this, you will see that all of these kids scored a zero on vocalization and expressive language on their first post implant -- I am sorry, there is one child here. There is one child here. On their first post implant assessment, and we look at the kids that were implanted later, same pattern, and there were two kids, that had some vocalization at their first post implant assessment, but again about half show consistent pattern of growth and they all show a significant growth from the first to the most recent assessment.
When we look pre- to post, vocalization and expressive language, again, broken out by implant 4.4 months and after 24 months and only two kids here preimplant that had any vocalization and expressive language. The baseline was basically zero. And again patterns of positive, significant growth change in vocalization and expressive language over time pre-to post implant.
So what do we know about expressive language? It is really the same for receptive language. We're not finding any relationship between age at implant and expressive language. We're finding statistically significant but really weak relationships between hearing aids and age assessment. Had we look at the relationship between cognitive level and expressive language, there is a strong relationship correlation above .6.
We do see -- again, kids with bilateral implants are doing much better than those with unilateral implants. Again, we're seeing kids over time improve significantly in the vocalization and expressive language and we're certainly seeing significant changes pre- to post implant.
Another way to look at this information is to -- if you look at the items the Reynell Zinkin you can kind of categorize them into certain levels of communication, and so the most recent post assessment data we have indicates that all of our kids are responding to sound and 64% are responding to words and phrases, and 46% are identifying words, 26% are responding to simple directives, and almost 22% are responding to complex directives as measured by the Reynell Zinkin.
For expressive language all of our kids are producing vocalizations. Nearly half are using single words or jargon. 41% are speaking meaningful words, 23% simple sentences, and 12% complex sentences.
When we look at pre- to post changes in levels, you see pretty dramatic changes. You can just look at that. I don't need to reads all of those for you. Really very little if any expressive language pre-and post now you can see that there is some pretty significant expressive language.
We also have looked at our largest group of kids, kids at CHARGE, and looked at their expressive and receptive language performance at this point in time, and really very positive, consistent or even better than the larger group, and another thing that's interesting with the kids, this group of kids, is that we are seeing much stronger correlation correlations between time and sound and age at assessment.
We're still not seeing any relationship between age at implant and these outcomes, but the correlations for hearing age or time and sound in these outcomes are closer to .7 rather than .3. Age at assessment are about .55, so there is a much stronger relationship for this subgroup of kids.
All right. So study A findings to date. I think the single most important thing is that these kids are very diverse group, and because of their diversity trying to find strong relationships based on simple to variable relationships is going to be difficult. There is much more complex things going on here. These kids are experiencing very positive improvements in receptive and expressive language pre- to post, and of course individual outcomes do vary, and vary.
Over time kids do experience pretty significant improvements in both receptive and expressive language. From here we're going to do a couple of things. We're certainly going to bring in data from the first study to really stretch the age at implant out to see if we can find some relationships when we have a larger range. We're also going to -- because we have a big enough group, I think we can do some more complex analyses and look at the interaction effects of some of the intermediating variables, to try to get a better sense of what's really going on, and we'll always I think have to go back and look at specific kids or groups of kids that look the same and outcomes and see if we can find what is similar about them, and I think that will especially be the case with the smaller pre-/post group and look for patterns in progress and then go look at the kids closely and see, well, what is it about them that are similar, that may in fact be contributing to those patterns of outcomes?
All right. That kind of is a quick summary of study A. We're now going to move to Study B. Let's step back and remember what these numbers and who these numbers represent. We can never forget that. Kat said she doesn't love research, she loves intervention. Well, research is fine, but the kids are what is important.
Okay. Study B. Do caregivers talk to their children more after implant than before implant? It is a very simple question. It is based on an observation from the first study that they didn't seem to, they didn't seem to be much difference. In this study we're using the LEA technology which is a digital recording technology and analysis technology. It records each digital recorder can record up to 16 hours of audio and then the software analyzes it in terms of the audio environment and adult verballallizations, child vocalizations, turns in conversation, and we can dig deeper to look at adult male and female verbalizations to look to see if there is a difference there, and the auditory environment is broken into five different items.
Meaningful talk is the most important. That's typically happens within six feet of the child, and it is focused on the child, distance talk is things that are being picked up in the background, picks up TV, noise, silence. Out of the meaningful talk we get adult words, child vocalizations, conversational turns, mean length of utter answer, and we pair that with developmental inventory that goes along with the LENA, and we can calculate developmental age, standard scores and percentiles.
So when we send out -- we typically send out two or three of the recorders and that are used and sent back in and plug them into the computer and the first report is just graphical report that we get back, and now I have to tell you this is a report with a relative relatively -- there is not a lot of meaningful talk going on. If you look at this top set of bars here, that is the auditory environment.
If you look at the green down here on the bottom, that is the meaningful talk, and this is 100% scale, what happens within an hour. The blue represents distance vocalizations, the yellow is TV, and the pink is just background noise, and the white is silence.
Breaking out the meaningful talk, the green bar, you have adult words. You have child vocalizations by hour, and then conversational turns by hour. Remember, this is a fairly low level of meaningful talk, and this next slide demonstrates a context where there is much more meaningful talk going on. Again, you can see the green which represents the meaningful talk is almost half of the audio being picked up. You can see adult words are much higher.
See if I can find the exact number in here. I think they're close to 3,000 words an hour, very high levels of child vocalization and conversational turns. So what do we do with this data? What I want to do is show just a couple of kids, examples from them. We currently have 15 or so kids really slated for study B, and we have data on twelve though some of them we were frankly just testing out the technology and their post implant and we're not going to really use that data in a study, and we have pre/post data here on three kids. We've got pre- data on three more, and we have got the recorders out on three more kids, so this study is still very much in progress. We're still collecting data and still need more kids. I will present a couple of examples.
Now, these are mean counts per hour, and let me tell you what you are looking at. This is an average across multiple recording sessions so I think we have three or four recording sessions preimplant and three or so post implant, and you can see on average adult vocalizations actually go down after the implant. Now, child vocalizations go up and conversational turns go up, but adult vocalizations actually go down after the implant.
When we look at it a little more deeply and break it out between male and female vocalizations, you know, it is basically the same thing. We're not seeing -- we're just seeing generally -- there is in-consistent sigh. There is variance across assessments. By in large the number of adult words went down after the implant. Which has pretty considerable implications, I think. Here is another child, and this child -- oh, this child, you know, let me go back. This is actually a special case. This child when we first started collecting data had just received their first implant, so in fact they were post implant.
We then very soon afterwards this child received the bilateral implant, their second implant, and so where we have post bilateral implant, and that's what that represents. Adult vocalizations went down after the second implant. We don't have for this child what the vocalizations were actually before the implant.
Here is an example of a child, though, that is truly pre- and post implant. Again, you see that the total average total number of adult words spoken across recordings goes down, not much, but it goes down a little bit. Certainly doesn't go up, total adult words. Child vocalizations and conversational turns, however, go up a a lot which is maybe a little surprising.
When we dig deeper, we see kind of an interesting pattern here. Preimplant you see here the red represents the female vocalizations, and the yellow represents the male vocalizations. If you look actually male vocalizations are really fairly high preimplant. They drop significantly post implant. In fact, they drag down the overall while the female vocalizations actually go up significantly. So even though overall adult words count is going down, the mother's vocalization improved or increases dramatically, and that may be why we're seeing a huge increase in child vocalizations.
Okay. So where are we post study B and where are we going to go? Certainly we're really just in progress. We have a small number of pre/post kids. We just need more information. We're seeing a lot of variability, both in parental interactions with their children across assessments as well as pre-and post implant.
When we look at the data, we do see often that first assessment. There will be an uptick in adult vocalizations that kind of goes back down again. Just a lot of variations. We're seeing preimplant we're seeing adult word counts range from 9 900 words an hour to 2,100 words an hour, tremendous variation. Post implant we're seeing a range in word count from 900 to 1,700 words an hour, again, tremendous variation across kids and their families.
All right. That kind of brings me to where I am going to stop and turn it back over to Kat. One other thing about Study B, we're also collecting information on the context and the activities that are going on during the recording, and what are the next steps we'll take, to start to correlate that to see when most of the talk is happening and that will add to the results of the study as well. Okay. I am going to mute myself and turn my camera off, and turn it over to Kat.
Let me get my act together here. Study C, which Susan and I and CC and myself are serving as the only interventionists. We decided it was hard enough for three of to us get good reliability, and just a little bit about Study C. We're really looking at what are the effects of individualized intesh vengeses that are carried out by caregivers or service providers post implant, in the home, in the natural environment, and we found that so am but a fair number of children who were deaf-blind maybe had to go to a clinic to receive AZtherapy and if they didn't make any progress in a month or two often they were dropped if therapy. You know many of you in the state projects know you see these kids and many of them are environments that have not been taught is how do you intervene differently than you would with a child who is not benefiting from hearing aids and doesn't have a cochlear implant? There are tremendous variations.
We know that the children have to hear, that the brain, the research on the brain in terms of the child impacting that auditory cortex in order to make a difference, so we also saw again that we felt that if children would receive more effective instruction or intervention that they would see -- we would see greater progress. Again, with these children and we are targeting ten now and ten within teens hopefully, but looking at more rigorous assessments so we assess more frequently these children so we have that body of data.
The majority of children who are in our intervention study so far, the parents have agreed to use the LENA, so we also have the LENA data. As Mark mentioned, we have parents select which routines are the most motivating, and we have a large array of those. I think they're on our website, so parents can select what is the most motivating routine for the child or maybe lunchtime for kids who are too bad, it might be going outside and playing and/or other activities, and reading books, toy play, it is varying with each of our children and we can go into those half-hour segments and look to see how much -- how many words was a child hearing, what were the turn taking, what was the conversational and turns and how much was the child vocal rising and how much were they using words, so we can even go in to fine tune analysis to hear what they're talking about so bless the parents for agreeing to use the LENA across their day. We're also when we go to -- we also take video tapes both pre-and before we start the intervention and then we take probes, systematically across the intervention. The intervention is fairly intense, and I will talk a little bit more about that.
I just want to show you some ( indiscernible ) talk a little bit about this child who is was in the intervention study here, and you can see preimplant, this child had a progressive loss, and they weren't sure they were going to implant him, and I think there is about four or five months between these two preimplant LENA data. We also have assessment data and it is interesting to compare that again I think we see this relationship which is very normal. The more children vocal lies, the more we get from parents, and now this child again was hearing more at this point in time. Four to five months later we see a significant drop in terms of the number of words per hour that that child hears on the average, and again we see a little decrease which again was progressive loss is not that unusual.
When we go back and look at the Reynell Zinkin data and some of the CSVS, we found that on those auditory communication expressive language variables the child did decrease on those two, but in that four months the child made some significant gains in terms of social adaption skills, daily living skills and cognitive skills. So while those noncommunication language behaviors were increasing, those more specific to language and communication were decreasing, so we have multiple data sets to really look to see better what is going on across individual children, and again after the child receives their implant and this is only about two months after the child has been mapped between and then again maybe at six months here where we tried to send out the LENAs, so again this is both mother and father talk but overall between the two parents you see somewhat of a decrease there, the child increasing a little here and over time and again these may be more vocalizations and these may be beginning to be shaped into more jargon as well, and, however, after intervention and again this was after about 16 fairly intensive intervention sessions, and one or two of these dad was involved as well but mostly the caregiver was mother and this was an eating routine, so we did a hand washing routine and eating routine and then we put the items away, so again very intensive and again you can see a significant change in the adult words to the child.
However, the mother called me as soon as she sent these in and said the wire was broken on the cochlear implant, so within one of these sessions very little -- the child was not getting benefit from it, so he has LENA implants out again, we send those back and forth so we can look at Poe intervention when everything is working for the child, and some of the children in our intervention study, it might be that I go two and-a-half or five hours one way and the nurse may say in some case TSMC might be a nurse who is the caregiver who is participating, and may say he is taking his implant off, and so we kind of put the study on hold until we behaviorally have a program to increase the consistency of wearing the implant because we can't really conduct our intervention if a child isn't hearing, even if it is for that hour-and-a-half or two hours.
So again this shows you mother and dad and again the dad starts really decreasing and post implant after the child has had across time you see both the mother and the dad decreasing somewhat but again post intervention here is on the last two, let me get my -- this is post intervention. So again you see not so much for the child, since the implant cord was broken, but mother and dad have both increased the type of verbalization. Now, they're not just -- our intervention isn't just about increasing talk to the child, and I don't have time to talk a lot about these, but we're looking at multiple caregiver behaviors, and we're teaching these across three phases. For an example, hopefully if Susan is listening and I will get this right without my notes. We teach the parent to increase opportunities for partial participation. We teach the caregiver to use descriptive talking so if the chairnt is going to pick the child up they say up or mom is going to pick you up, mama is eating. Here are bananas, we have bananas, so they're doing also very responsive, so if a child makes any sound, the parent is in there imitating that. We teach that and we teach it very systematically. We use Karl and Carol analysis of effective intervention tech kneeings which are very applicable in terms of technical assistance.
We really explain to them, we have visual charts, we draw it out, we gr in and we do the demonstration for one or two sessions. The parents can videotape that with the flip camera so they have that, and then we use coaching, a guided feedback strategy where we give the parents feedback as they become the interactor with the child. We can also use our flip cameras to download to the parent's computers, so we can talk about that with them as well and then look at the data.
So very systematic teaching and then we also -- the second phase we're actually the parents got a shift although they still do some appropriate descriptive talking rather than saying up as in I am going to pick you up, they say up in the auditory sandwich before they use any gestures or any touch Cues or any signs, whatever is specific to that individual child. They're also learning not only to give directives and expecting the child to understand them or giving prompted support, they're also working more on trying to get the child to identify objects that are appropriate within whatever routine they are targeting, and then again the final phase is we switch so they're providing opportunities for the child, expressive communication. This may not be speech. It may be pre-linguistic gestures. We're looking at die electricity and gestures and rates of communication even though we still are using different techniques to get the child to respond and increase their vocal behaviors, we still know we need a good base of pre-linguistic communication, so again we also look at generalization to other routines to see if the parent can generalize, and then we wait six to eight weeks and go in again without any intervention to see if a child and the parent, not the child but the parent can maintain it, and so so far we're very excited, but we do know one thing. We're talking about 16 to 18 very intensive intervention studies where we're teaching quite a bit. We wouldn't advise that. We have also worked with two children with their early intervention teams where these teams are taught and then they go in and we probe them, and that's probably more effective and that really gets more to how do you deliver effective TA?
Well, you don't do one webinar. You don't send out a paper. That, too, is very intensive to get these teacher who is may be using to signing who haven't worked with cochlear implants even though they're hearing impaired teachers, the V I staff, the speech therapist, how do they shift to teach parents because we found that parents aren't really trained in effective strategies, especially in their own home environment. They might be given sheets of do this when you get home and we know that's not effective.
Very quickly, I know you can't probably read this, but this again is breaking down the assessments with a little by who when we got him he was post implant for his first implant and just pre- on his bilateral implant. This little boy also has almost no vision, maybe a little light perception in the lower quadrant of the left eye, and he can only have use of his left hand, and he is now rolling quite a bit, but again he doesn't sit by himself or walk, but even then he can make some wants and needs known through body language.
Here again the second assessment, again, this was in April, this is November, same year, and he received a second implant, and again you don't see much difference in progress, a little bit in responding to maybe one word, and I think that word was up that the mother used. Now, again, he had an infection. One of the implants was removed. We started intervention with the team and then he transitioned at age 3 so we're working with a preschool team. You see barely I think for this child with almost no vision or cerebral pulsey and he is tube Fed although they're working on eating. He really increased on his assessment his pre-linguistic skills and is responding to simple tactile gestures, and he is using Diectic gestures and doing turn taking and responding to some words such as bite, up, hands up to put the tray on, and so again we see that while just having implant didn't do much for this child, even losing one, when you get in there and teach the team and the family how to be more interactive, how to use the auditory sandwich, how to expect the child to respond rather than just acting on him, we're seeing some nice increases.
Now, one of the things I always say in communication and you can see this child is bearing me out. Every child can protest, right? They come wired with protest. So that's the thing he can do 100%. He could turn his head, he could push away, he could say I don't want this, I don't like this, put me on the floor, and again you can see he functions of communication are increasing here. His gains in routines, his object play, if you look if kids are interacting on their physical environment, they don't have much to talk about, so we're not just teaching auditory perception and early receptive and press sigh communication language, but we see that we need to really go in and teach those teens also to work on more of those cognitive skills.
Very quickly here so we can have time for questions and answers, many of our kids do not have pre-linguistic communication skills, so we can't expect them just to start hearing and using words, and I think parents have to be more realistic about the time and sound or what the children come in with. As a little boy that I just showed you many of our children do not have that functional object view. Some are zero. As I mentioned earlier, some of the AB programs were not individualized so children were dropped. Again, we still look at since many of our children cannot be conditioned, I think we can, it is just going to take a lot of time that can't be done when they go in for mapping in a half-hour and hour session, so we see this as a tremendous need to possibly get more accurate maps across time. Many children were dropped, and again parents were not effect effectively taught the strategy that is could be used at home. Often what we're finding and this is an interesting finding that some of the hearing staff at one of the school districts and I just realized during a presentation, that often these children have tremendous toys that are high in the visual and vibration properties, not so much in sound, so it is even suggesting toys that may pair sound alike and go to sound and we're seeing more effective responses to toys with sound with one child as we had the parents or the loan out different toys, so if a child still using and getting a lot of light and vibration, that's working different parts of the brain than the auditory cortex, so for some even simple techniques that can be recommended, I think we might look at some very simple things in the home.
Again, so many children, they can be Fed by a nurse and not hear one word during that routine or the parent may be across the room and they're not hearing within six feet, so they're not getting many, many words, so I think these are some of the limitations, challenges, yes. Many parents really work hard to keep the implant on if a child sz cerebral pulse I, on the floor, that becomes a tremendous challenge for many families or kids try to rip them off and once a child learns I can get a lot of attention for doing this, rather than those families who said, no, you're going to wear this, you might cry for six hours or eight hours, but usual going to keep it on, or again we worked very closely, the parent does, with the CI center to say is there something wrong? Is there a reason the child is refusing all of a sudden to wear the implant, but sometimes you can tell. There is no -- the child doesn't turn red, they just rip it off and kind of shill like I can find a way to look at in. There is more research with typical children who are deaf in terms of cognitive skills. They're talking about a lot higher cognitive skills than we are, but even then they're looking at cognition as being a tremendous important variable in terms of predicting outcomes, and again the last one you're not surprised about is we need to do a better job of teaching parents how to implement new strategies and embed them in care giving play family activities.
Again, our website, we're getting more stories up. We're going to be putting tip sheets up shortly, and with some pictures from the different children, and I think Lynn has done a great job of linking us with others, and now I think we're up to questions.
Kat, this is John Harding again. I want to thank you before I forget and Mark both for presenting today and remind folks that the recording will be available online, and now is the time for questions and I think most of the presenters and Randy picked up the questions that were posted on the chat box. If your question didn't get answered or you have one now, just press star 6 on your phone, and remember to unmute your own phone if you have done that and ask your questions, so we'll pause now to see if there is any questions.
This is Mark. I will respond to Jim's first question about how many kids have no additional disabilities, and there are 13 kids in the our database that have no additional disabilities.
This is Kat. I think one of the questions, too, is we're also -- when I say we, it is collective. It is really Mark, is really analyzing the McArthur Bates because we are looking at signs both receptively, expressively there because some of our children are just now after four years of again inconsistent wearing of the implant, but are making more progress in terms of auditory perception and they're still not talking, but they're signing vow vocabulary has increased tremendously, and in fact being able to hear the words of sounds I think has assisted them in increasing their signing vocabulary, so I think there are so many different assessments that we're taking that we can look at. We selected initially just the receptive response to sound and expressive just to look at where the child might impact or benefit the most from their cochlear implant or not benefit.
I think I mentioned there is also a communication sections on the Reynell Zinkin, and that looks at the child getting their needs met in any way using three gestures or three signs and having an expressive vocabulary either in sign or words of 20, so many of our children have gotten full credit on that and yet still are very low on actually understanding or responding to sound or to words, and you can see how those were broken down, but I think one of the things we can say is many of our children are making progress, significant progress? Maybe not. Are some of them making significant progress? I have to tell you a little story. A little boy who was outside when Mark said it is all about children, and again this little boy, too, he had bilateral implants and got an infection and one was removed, but before that happened, I did an assessment on him, and I went in and we were videotaping him and he had gotten new glasses, and he said and I could understand him, his mom said put the new glasses on. He said I don't want to wear my new glasses, I want my old ones, and the speech path ologist is going he has pleurality, glasses, ones, and he went upstairs and said, like, where do the green trucks go? He said the green ones go in those drawers. You know, the Z, the S, the glasses, those are different pleural features and absolutely amazing. However, when we saw this child, Susan was the first to assess him at 14 months and implanted at 11 months so very early, he has a twin which again is a great variable but this little boy was doing a fantastic job of playing with toys. He was more cognitive than he was social, so again we have to look at those cognitive variables I think are very critical in terms of progress. Susan Wiley at our last monthly meeting made a fantastic observation or statement, and she said, you know, those kids who some of their additional challenges even if they were hearing kids and heard from birth wouldn't be making much progress in the area of words or receptive communication and language, and I think we have to remember that, that some of our kids are getting implants that have such significant brain damage we might see them responding to environmental sounds and most parents from our survey said we wouldn't make a different decision even though we don't feel we're getting the benefits that we expected. We would do it again. Our social validation data I think is also a very critical database that we did on CI1 and I think we can't say, you know, globally kids are not making any progress who are deaf-blind with CI, you can see the data in that some kids were making tremendous progress. A few are making no progress and in fact some of their families have discontinued the use of the cochlear implant, but that's I think a very, very small majority. The majority of our kids are making progress. It is going to take time, but it is going to also take much more effective intervention, and that's my last word.
Kat, this is John. There is a couple of questions in the chat pod, one from Leslie asking about the med L implant and comparing this to other implants. Do you want to take that question?
I can't compare it at all. It is just I think since the med L is the manufacturer if I am correct is out much Australia, we had not seen any implant centers using that until recently, and I mean I can't say it is good or bad or indifferent from one or the other, but hopefully we did publish the data in the Journal on the survey from the parents. We will be publishing other data. We'll be putting some fact sheets up on our website and sharing them with other audiologists hopefully that access DB link as well, but again we don't want to publish data until we're in the last three or four months of the study since it does shift somewhat and as Mark said we really need to bring the kids up to the age of 13 because some of those children weren't implanted until they were eight or nine, so they were I implanted much, much later than the group overall is now, so I think Susan and Kiki and I should expect to see in the end some age of implants because of individual children we do see that but we don't see the 102 children database.
So I think I am sorry if I made an assumption that the med L was better. I have no idea if it is or not. It is just different, and we're just seeing it used recently a little bit more. So Jim may be able to comment on that a little bit more if it is just more of a P.R. that more cochlear centers are considering the med L, and I do know that there were some problems with the advanced by an I cans and in fact some of our kids are on hold until I think June to get advanced buy on I can because I think the FDA put a hold on that for some problems they were having with that, but I don't know if that's with older generation or if it involved children as well, but we have heard that for some of our kids on hold forgetting the implant.
This is Johnagin. I want to make sure that Jodi and Cindy's questions were addressed, too. Jodi wants to know if the information is shared with ENTs and/or audiologists across the country and Cindy asks where she can get more printed information on cochlear implant for students with deaf-blindness?
As I said, if you look at our website, kidsDB.CI.org, we'll be putting more and more information on that website. I think we have to look at additional distribution methods to get to more audiologists and hopefully DB link can also disseminate some information, and however, we all try to do a good job of putting in abstracts to different conferences. Susan and I in the past have always presented to Eddie, and we have the our abstract accepted. Susan Wiley presented by herself this year because of our funds, and she had a great audience. She said one of the manufacturers representatives wasn't really happy about age at implant, the earlier data we have, but it is so be it, our data is what it is. We have our abstracts into the international cochlear implant, the 13th international conference in July in Chicago, so they really contacted us because they're seeking presentations or papers poster sessions specifically for children with multiple disabilities and children with CHARGE syndrome, so I know Susan will present at the CHARGE conference and we're presenting at other conferences that hopefully the word will get out on sharing some of our data that we have.
Kat, Leslie has a question. She wants to find out if you impies have included the number of kids that apply and how many children are selected in the project?
We originally had 28 states who agreed to help us find kids, so if a child was referred from that state and again we had to go through our IRB, so the parents, they would indicate an interest. They also had to sign a consent, but we didn't turn any children away. We also though tried to keep data on which children were not implanted and the reason that the state projects give us for that child not receiving annum plant, and I know in one state we had two children we assessed and the parents were considering annum plant and the odd otionologist and the CI team felt the hearing was still too good and they felt they were benefiting from hearing aids to a degree that at this time, anyway, the implants weren't then recommended in a final, so we get a lot of different data like that, but every child that is considered on the deaf-blind registry or the national child count that's been identified with vision impairments, has been accepted if the parents agree to be a participant in our study. Is that -- I hope that answers your question.
Again, I might say really quick I know we're past time is we're finding some implant centers will implant almost any child regardless of the severity of the disabilities. Other implant centers will not. We get tremendous variation in terms of the children that the CI centers eventually will determine is or isn't an appropriate candidate based upon their criteria.
Kat and Mark, I want to thank you both again. We are bumping up against the time when we need to close. Before we close, I want to make just a couple of quick announcements. You can see Randy posted both in the chat pod and the note pod information about where to fill out a survey or an evaluation for this webinar. We would really appreciate it if you took the time to do that.
I also want to mention some of the upcoming webinars that NCDB will be sponsoring on the 30th of March, Gail, Leslie will provide an overview and virtual walk through of the extensive array of resources available on our website as well as those available through the D B links information services, and then on April 13th we'll have a group talking about customized employment for children who are deaf-blind, so want to remind you of those. Thank you all again for joining. Thank you, Mark, thank you, Kat, and we will close the room. [ event concluded ].