ROUGH EDITED COPY 
EDHI CONFERENCE 
MARCH 15, 2016
Advocacy Evolution: Educate the World 
Pacific Salon 4‑5
CART CAPTIONING PROVIDED BY: 
ALTERNATIVE COMMUNICATION SERVICES, LLC
PO BOX 278
LOMBARD, IL 60148 
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This is being provided in a rough draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. 
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>> MARJORIE:  Okay.  Maybe I'll wait 2 minutes, because my thing is only 22.  And people are still notching.  I mean, of course.  I would take popcorn over me.  Or maybe they're getting popcorn to bring with them like a movie.  Oh no, I have a sign name.  M like bling my daughter gave it to me.
Okay.  Okay.  Cool.  If they're okay with us ‑‑
Well, we post it on our website.
>> PARTICIPANT:  A copy I can use as a product example.
>> MARJORIE:  Okay.  All right.  I'm going to start.  All right.  Welcome everybody!  I guess I'm competing against a popcorn outside, so...
Anyways my name is Marjorie, going to talk to you today about my advocacy evolution and how I educate the world in hopes that it will help you while you learn the shifting role of advocacy, make your own little toolkit for your me child or who you work with as well as try to anticipate what your audience is going to need.
So about me, my daughter Chloe here was born in Virginia before newborn testing was required, so her hearing loss went long undetected.  This is a cute picture of her, her hearing aids are flopping out of her ears when she was just 2 she adjust been diagnosed and aided and the picture on the right is her today as the lovely young woman and college freshman me is he today and she's why I do what I do.
I'm going to share with you our journey, including the mystery, the road trip, the education and the discovery.  The police industry, being the process brilliant baby in the world that she was she was giving her clues will parent clues she would play only the low end of the Canno, never going above C, we thought this is odd but kind of cute when you would hold her and she would reach and touch people's mouths and she would do weird things with her mouth trying to rep play cat what we were doing that she wasn't hearing and she was very slow to walk because of the sensorineural hearing loss at affected her inner ear hair cells and when she did she was running around like there balancing always very cute but odd.  Now she's not 100% deaf so she would respond to some sounds.  We were thinking is she already entering the teenage substantial where she ignores her parents, but because we also thought was the process brilliant baby interests world when she wasn't meeting the speech metrics that all the baby books say and my husband and I were religiously checking things off she wasn't making any of those and we were getting concerned and we expressed our concern with friends and family and of course they weighed in oh your brother didn't talk until 3 and now we can't get him to shut up.  Thank good phon for our pediatrician, I said yeah, you know, she's not doing any of this talking stuff, mama no dada our pediatrician said if it will put your mind as ease let's just get her tested and Thank Heavens she did she got tested diagnosed and aided at 18 months, so that was lucky.
While we were solving the mystery we were actually also entering a physical road trip.  She was born in Virginia, and thought was also great because we were in northern Virginia and all of our workup was done at Children's Hospital in Washington D.C.  They knew absolutely what they needed to do for this young child when my husband and I knew absolutely nothing, we didn't know what to ask for anticipate or anything and I'd like think of this road trip as kind of weigh stations on our own evolution, you know, when your child is learning to read they have what is it emerging reader and reading readiness and at that point we were like the clueless reader by the time we got to Georgia, we started getting, I would say we were emerging we became emerging in our knowledge of what we needed to do and from Georgia we moved to New Mexico, so between her diagnosis at 18 months and her 4th birthday in Santa Fe we had three different early intervention teams and luckily they passed us off quite nicely from one to the other so the only down time in her services was when we were physically driving and it's a long drive but that was our road trip.
And along the way it forced us, this load triples kind of forced us to have our act took so I had a binder peach goals, activity goals and all that but when we learned when we tops as I said, so Children's Hospital we didn't need to know anything they did it.  We needed new earmolds in Georgia so we went to the local audiologist and said we need some new earmolds for our 18‑month‑old we came back, picked them up and they were nothing like what we lad come in with my daughter had soft silicone with a little Helix hold that helps hook it in on that little weird spot so your ear and a vent hole, what we got was hard plastic with no venting, no hook, it was basically what they gave their older customers.  So I learned the hard way that there's a difference between an audiologist and a pediatric audiologist.  So now ‑‑ and I mean up until that point I didn't even know that earmolds were multiple choice I just thought hey everybody has earmolds there's the same but they don't.
So based on that experience when we moved to in New Mexico, we had fabulous speech therapy in Georgia but when we moved to New Mexico by this point I was smart enough to figure out maybe there's a difference between a speech therapist, the local one who worked at the hospital with stroke and accident victims who are recovering speech against someone whose working with small children who are acquiring speech to sounds they can't even hear, so I found one and we ended up, driving an hour three times a week each way but it was worth it because we found a good pediatric speech therapist who had worked with other deaf and hard of hearing children.
So by now my daughter's ready to enter kindergarten and my husband and I are like whoo we did the communication modality choice, the technical equipment choice, we did speech therapy, now we can turn her over to the professionals because they'll know what to do.  Well, we learned also that wasn't always the case so we've dropped her off at kindergarten and in the state of New Mexico, I don't know if any of you have been there it's gorgeous but it's also very undense population‑wise and in our school district, between K‑12 there might be a total of 12 kids in any given time with ‑‑ who are deaf and hard of hearing so not enough to warrant a deaf educator and so the special education group would take care of my daughter's IEP needs and I also came to learn that in the state of New Mexico, you were not hired to have any deaf education course work to get a special education certification.  So while I had been assuming all along that this teacher who is about my age which we really won't get into she shad just forgotten what she lad learned way back when she was 20 but she never learned it so I found myself at our parent/teacher conference my husband and I both said this is the best you can do we don't want any of it we were just going to it on our own which was probably a Supreme reaction but it just wasn't working and she was falling behind not even in just reading but also in math which is her area of strength.  So we learned luckily this all hand in first agreed we learned in first grade that educators don't always know what's best now they do want to help your child, but I learned that it was up to me and my husband to educate the educators on what they needed.
So this was our discovery or epiphany, first we learned we wanted to anticipate situations before ‑‑ anticipate situations then figure out what we want and need or what my daughter would need for access to communication, then advocate with the,s involved, teachers, classmates friends parents, girl scout leaders and so on and educate.  So this is where we educate the world!  We defined the problem or defining the hearing in terms that a non‑audiologist someone who is even more emergent reader than I ever was can understand to anticipate the situations that might come up that's they will need help with to summarize in an a one‑page or less reference point what they need to remember, and then to educate.
So we began our ‑‑ this by starting with define knowledge the hearing loss in terms people can understand.  When we started telling people our daughter couldn't hear they would say what percentage of loss does she have and what agreed, mild, moderate?  Well, my daughter has 80% loss based on the Miller dots but she has a sloping high frequency loss so she actually rankings 0 and covers all of them all the way down profound and there's not a good answer and even if there was, what does somebody saying I have a moderate loss seen in next I'm going to share with you a whole bunch of audiograms that were part of our evolution.  I was born in the Army hospital and I was in the military force, this is a DD2216 and that is it the audiogram, you can see, let me ‑‑ oh, I've got this, cool.
So here's the left ear, the right ear, the frequencies across the top and the numbers that are typed in are the decibels at which you hear it.  All interesting but what does it even in someones who in the an audiologist?  So the blue results on all these next charts are the unaided and the purply pink ones are the aided results and we've always got into the practice of sharing both the unaided and the aided results with everyone because the aided results are in the sound booth with the child's 100% focus with fresh batteries no moisture in the tubes, 100% child focus and that situation is not replicable in a classroom or the girl cut jamboree so the true truth of the here is somewhere in the middle.  This is an audiogram most of you are familiar with, so we have the frequencies across the top, decibels along the vertical, and if you know that normal hearing is a straight horizontal line around the 20 ‑‑ 20 decibels, by looking at this graph you know that something's going on but what does it mean?
So now we go to the Killian Miller dot matrix, now they've added the speech banana and this is the sound at which ‑‑ on or about those are the frequencies and decibels at which sounds of language occur, each little dot represents a percentage point.  20 years later, Killian Miller updated theirs and now it looks more like a real speech banana, the first one my daughter's hearing loss was 80% now it's 77% aided it used to be 12% loss now it's 18% so did she get better or worse in no it's the same but it's a new graph but again, what do these audiologist go grams do to tell someone whose working with my child whose not an audiologist or an early interventionist how does it help them help her?  To you today and I saw this at your presentation, too, I call this a pictorial audiogram this particular one is from medical he and I did have in my notes to tell you to go down to the hall and pick one up but they've already broken down the hall but you can fish around on the Internet and this ‑‑ in fact my slides are on the EHDI meeting website so you can look and actually see this little fine print if you want to download some yourself but there's a whole bunch out their.  I like there one because it's nice and clean.  Some of the early ones I used had hand drawn in things, but what this does it now you have this speech banana but now they've actually slotted in the phonemes that occur at these decibels and frequencies, so you can see here the F and TH, they're out of range of her hearing even with the hearing loss on a good day ‑‑ with the hearing aid on a good day so this explains to a teacher why all of her geography papers are missing the plural endings and the post is hive endings and gives them something to help work with her on, it also shows them what does 110 dB sound like, now I know it's a jet engining and that helps to show and it also shows a little bird, my daughter hasn't heard little birds tweet, so this was our be all and end all, that's been in her toolkit to take to teachers and camps and so on ever since kindergarten.  And this is fabulous.  But what's more fabulous is this.  I'm going to play a 38‑second video it's Fred splint tone made by Heuser Hearing Institute, in the lower corner you will see an audiogram and a blue speech banana and the red line, it goes from horizontal as normal down to mild, moderate and severe.  And because I'm a data freak and I just always wanted to know what my daughter actually heard and so I think this is great and the first time my daughter heard it, she could tell no difference in any of them without her hearing aids and with her hearing aids, she could hear somewhat between mild and moderate.  Which was also important to note to teachers and other adults because sometimes people have the misconception that a hearing aid brings your hearing it 20/20 hearing like glasses do and that's not the case.  So let me play this 38‑
(Video).
1, 2,  3, 4, 5, 6, 7.
(Captioner can't hear the video audio).

>> MARJORIE:  I think it's interesting, too, our captioner couldn't hear the video audio so that's what someone who has a hearing loss like that, at the can't hear it either, and did I already say that the first time my daughter heard it she tried to lipread Fred?  It didn't work.  With this video and chart it shows a caregiver what my daughter can and cannot hear, so now he feel like we really defined the hearing loss in terms that a layperson can understand.
So next up was to anticipate and anticipating our original thing, my daughter's 2 we're taking her to daycare, mother's day out, teenager down the street come baby‑sit and when we got her hearing aids they give us a 20‑page booklet, but that's impossible for a caregiver who has got a shift change and a substitute to figure out so I figured out what is it that I really need them to understand at the end of the day.  So for the caregiver situation, there was the basic equipment operation.  How to turn the hearing aid on and off, how to change the battery, what does the feedback mean and how do you revolve it.  And then don't get them wet.  I used to lay at night ‑‑ lay a wake at night worrying about the fire hose parties with the fire department and the water balloon parties and you know people don't realize how fragile that the equipment is.  So I would always say don't get it wet.  And then effective communication, I mean, there's more than this equipment, the hearing aids alone and this is a part of our education and educating others the hearing aid alone are not enough so once all the gear is in place, but there's also some effective communication techniques such as using visual cues we often said don't make our daughter first in line after you explain to someone what to the do she can be second or last or whatever but first, she's not going to know what's going on necessarily.  Especially, I mean, I don't know how many people effectively communicate with 2‑year‑olds in general but especially someone whose not hearing anything.  And then cue her buy calling her name first, you don't see do you want a cookie Chloe, you should say Chloe, do you want a cookie because.
A.   She wants a cookie but if you say her name at the end and she looks at and doesn't know what your talking about so you need to cue the child and say so she know to turn and look and then she can lipread you and follow what's going on.  And then that one on one communication is always better than a group situation, true on the Mary play ground or in little work study centers and so on.  That's what we did for caregivers and next I'm going to share with you my evolution in my one‑pagers that I handed out.  This drawing I hand drew because this predates computer graphics so I'm dating myself here I drew my little ‑‑ let me get my pointer before the key things, the on/off switch, the battery case, I'll little diagram on how to screw them in the ear and then of course my favorite don't get them wet.  Don't get wet.  So I just put this in a plastic insert that was in her diaper bag everywhere she wasn't.  And actually sometimes I clipped it, you know, those these ring binding on the outside of the diaper bag so they knew that was there.
Then when we got a little older we got on other home FM system, now my drawing is a little better, same picture but now we had to throw in the picture of the microphone and the remote, but the hearing aid still cannot get wet.
You would think I have a water phobia but I actually swim miles every week but not with my hearing aids in.
And then now we started kindergartner garden and the school got a really fancy FM microphone and buy now there is computer graphics available that I figures on the how to download on a floppy disk and ‑‑ but I still have my do not get wet right here, don't get wet.  So the pictures ‑‑ and I'd say we used this probably at least through first grade maybe second but by second grade honestly my daughter was able to troubleshoot a lot of her own gear and by then had enough language she could explain to the teacher now, you're wearing is upside down that kind of thing this was our one pager and it worked pretty well.  So then as my daughter got older she wanted to go to camp in my world view there's two kinds of camp, the deaf and hard of hearing center camps and the mainstream camp, at the deaf and hard of hearing I felt like I coupled stand down on the whole party then because they knew what the equipment means, they also knew about the batteries and all that so they why very aware of what kind of communication support that my child would need.  It was also an opportunity for her to bond with other deaf and hard of hearing kids which as I mentioned in our little town there wasn't.  But I did learn the hard way that some camps actually have an emphasis on a specific communication modality and when my daughter didn't fit with that modality very well it wasn't as successful as I would video liked.  And then mainstream camps you know, the horse back reading chance church and academic camps, and then I got book that helicopter mode because they don't realized the hearing aids is thousands of dollars resting on your child's here and I don't know about you but my favorite memories of most of my camps when I was young involved the evented that happened at while or after lights out well that's not access written do a child relies on lip reading.  And of course the ever present water events, you know, we emphasize yes when you go white water rafting you take the hearing aids off secure them in the bus before you go on the raft.  Because after that it's kind of game over.  But you know we just send the stuff in advance, I Chloe and I would talk with the camp director briefly at the drop‑off and it seemed to work pretty well and then schools, schools, my huts and I are very academically oriented so we put a lot of emphasis this so we would share the visual add go gram that I showed you the link to the Fred Flintstone video and I also have a link, the resources to FM usage, I have the experience where a teacher did not want to wear the FM, a long story but so we fished around and found what it sounds like with a FM and what it sounds like without using the FM and what a difference it makes.  A one‑page clam accommodations list, a one‑page IEP accommodations list and then some listens to other resources.  One of which I'm very proud is my daughter's own blog, HearChloe.blogspot.com she started writing it sophomore year in high school, she did feel alone and isolate add and it's a way for her to share experiences and her stories of growing up deaf in a mainstream school and it's linked to by hands and voices and AG Bell and so on so I recommend checking that on you and you know teachers it's fun for them to read and see some of the woops moments that have come up.  And then Rachel Kolb article, I don't know how many of you were ‑‑ attended last year's EHDI because she was one of the plenary speakers and she wrote a wonderful article for Stanford Magazine about the exhaustion of lipreading all of this we put out either like the week before school starts so that ‑‑ because you don't really know who the teacher so but we share it with them so they have time to absorb it and digest it.  The exhaustion factor is important because it also explains why in the IEP that there's extra time allowed for testing and homework if needed because she is physically exhausted from the effort of listening.
So this is a one‑page list of classroom accommodations I realized it's hard to read but this is available on the EHDI meeting website link, I also have some copies in the back of the room when you leave.  This was prepared by our educational audiologist for our schools, she gave me permission to they're with everyone.  I'm not going on to go through it but I will say this we highlighted the effort listening required is often underestimated just because we need people to understand that it's a lot of hard work just to function let alone to try to learn.
This was our one‑page IEP accommodation that we share with teachers, I know every state has a different format and in fact every county within the state has a format change and there's a lot of kid with a lot of IEPs, but ‑‑ and they're 20 pages boilerplate a lot of legalese and speech goals but this is the one page I need them to take home with them or to ‑‑ as a take‑away if there's a substitute or a volunteer, this addresses what's needed.
And so our evolution started with relying 100% on professionals then I got educated, and then kind of weaned myself off of that as well as Chloe started evolving and taking on her own role.  And then I don't know if I mentioned I'm an engineer and a MBA so I love graphs and so on the left is my percentage of involvement, and down here is the age and you can see in the beginning the blue is professional, the yellow is me, the green is the child and you can see that gradually the child takes over.
Enclosing this is one of my daughter's blog post the one she's prepared about our college freshman orientation and in it she basically ‑‑ I'm so proud because it's kind of coming full circle where she's now sharing her needs‑help for communication with all 1,719 freshman before they started school and she put the little link to Fred in there, too.
And here is the list of resources.  So again, my slides are on the EHDI meeting website so you don't have to write everything down it's there.  I'm about out of time and I've got the handouts in the back, too, so if you have any questions feel free to ask me after wards.  Oh, you had a question?
>> THE STUDENT:  (Off mic.)
>> MARJORIE:  Oh, Miami very proud to say she goes to Stanford.
>> PARTICIPANT:  (Off mic.)
>> MARJORIE:  Okay, yeah, so the question was abouts my daughter playing a musical instrument and she wrote a lovely blog about that so it's her own writing about the cello, nuclear my ears is on HearChloe.blogspot.com but basically in school in four grade they offered free orchestra lessons and I played the violin, sly she wanted to do that, so she started with that, but then as we got new hearing aids, that increased the high frequency sound she could hear and when moved from analog to digital, the hearing aids became uncomfortable because you know a violin is up here on your right shoulder so the right ‑‑ the left ear hearing aid would like shut down or it would just do weird things and she didn't like that so then we moved to the Viola, because it's lower toned and we tweaked the hearing aid again and she didn't like that either but now she plays the cello and she that was because it's in the middle of her body and not near her ears and personally I'd rather hear her learn a new song on the cello than on the violin she wanted to try the bass, I said no way.  But she does like music, so she does many sounds she can't hear but the sounds that she can hear she really enjoys and I think the music in general is good because it helps with rhythm and just, you know, listening to then toes, she's trying to learn the ukulele now and the piano, she just put a blog post out about Tyco drums, Japanese drums and where you can feel ‑‑ I mean, she really when she plays ‑‑ whatever she's been playing it's also been about the vibrations that she can hear and you know in church she likings to put her feet on the wood to hear the organ vibrations.  Okay.  I'm out of time.  Get the hook!  Thank you!  Thank you.
[Applause]