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Hello, I'm Barbara Lee and I'm here with Lynn and Nicole Clamp at their home in Charlotte, North Carolina
and I'm here because the Clamps are the parents of Grayson Clamp who
was - at the time he received his brain stem implant - the youngest child in the research study
in the project. Tell me right?
Yea
And he was three years old when that happened...two years old?
Three years old
Three years old when that happened and the Clamps are a Cueing family and we're here
to talk about their journey. So...first question of all. What was - we just want to get the
facts - was Grayson's date of birth was....?
December 29th, 2009.
All right, so we can say January 1 to make the math easier. Alright..and was there any
indication before he was born that deafness was a possibility?
Not...not really. Not before he was born. Um...Grayson is adopted. We fostered him firsthand
then adopted him so we don't know a lot about the family history except to know that his
mother was involved in a lot of drugs while she was carrying Grayson so he actually was
born with a number of medical issues. The hearing issue was actually the least of our
worries. He was born with a pretty severe heart defect that required open heart surgery
as an infant. Uh....and so we spent a lot of time sorting out those scenarios before
we had to deal with his hearing.
Oh, okay, yea - keep him alive!
Right, right.
Oh...Nicole how old was he when he was identified with Deafness.
He was about 11 months old when we confirmed that he was profoundly deaf.
Almost a year then because of all the other issues.
He didn't pass his hearing screening at birth, right? We don't think --
We don't really know what was done or not done because of all the other issues.
Okay...uh... well after he was identified and you knew that he was deaf, when were intervention
services initiated? I worked in this state also and I know they're supposed to be right
there. So how did that come about?
That happened the day the audiologists told me that his results came back as profound
hearing loss. She referred us that day and someone was calling us within a few days.
Good!
Very early on.
Quick!
Yea, very early on. Once we were able to tackle that issue, we had a lot of support here in
the state and eventually from public schools.
Good use of your tax dollars.
Yes
Okay...I know Grayson used hearing aids for a very brief time, you said weeks but not
a long time, and not really beneficial. But then you did, and at this time did you know
that there was no eighth nerve?
I don't know if we knew right at that point; when we got involved with Chapel Hill they
started walking through their protocol which was hearing aids first and then x-rays to
get a sense of whether or not cochlear implants could be an option. So, probably not at a
point when we started with the hearing aids, but those did not work from the beginning
so that was pushed to the side, then we did have an MRI done and at that point confirmed
there were no hearing nerves in either ear. You know, we didn't understand how grave of
a situation that was at the time, but we are still very much encouraged by our medical
group at UNC hospital to still proceed with the cochlear implant that - they explained
to us 'look, without a cochlea nerve, the probability is low, but there have been children
who receive cochlea implants who didn't have nerves who still got some benefit from them'
and the surgery being pretty safe and quick and the recovery quick -- there was no reason
not to do it.
Okay..and so, how old was he when he got his cochlear implant?
Eighteen months...so we moved pretty quick from, you know, sort of the time that we really
got an understanding of what hearing loss meant and where we could take it we were pretty
quickly turned around into surgery for the cochlear implant.
Alright, so that happened and then -- how did you first learn about cued speech?
Yea, that's a really just uh...a neat part of our story -- and it's just one of many,
honestly sort of vignettes if you will that for us just continued to show how God was
opening doors - unexpected and in really at the exact time that we needed it. I literally
just sent an email to a ton of friends in my work place & it got forwarded around until
it found it's way to a family and I was just asking information like 'Does anybody know
anybody that has hearing impaired children or whatever. and so the email found its way
to a family that lives here in Charlotte with the exact same anatomy as Grayson and - um
- essentially the exact same sort of deal like 'we don't know what to do' and they were
well down the path at the time that we met this family - the Addison family - uh.....
their daughter was fourteen. So they were a long way down the path and I met with them
and they just spent several hours explaining, really explaining everything. What hearing
loss means, different modes of communication from American Sign Language to Cued Speech.
They had chosen Cued Speech actually after trying ASL and struggling with it. and then
combined the Cued Speech with a cochlear implant to have really their daughter become, really,
an independent child...you know, teenager.
And so that one conversation of a couple hours, and then shortly after that having a chance
to meet the daughter, it just opened a new world for us and we never looked back. We
started learning Cued Speech almost immediately from her cued speech transliterator, who is
now Grayson's Cued Speech transliterator, and they promoted Chapel Hill and we got to
really meet with Chapel Hill and learned their program. We used the same surgeon, the same
audiology group, you know the whole thing so it was just amazing for us to just have
that connection so quick exactly when we needed it to tell us and everything was right - everything
we were told proved out.
Good, and as an early intervention former teacher, I love that you heart it from another
parent. I know - we got to school and we know lots of stuff in the book, but the parents
are the ones who walk the walk and that's just marvelous...and we know that I know the
Addison family and I am delighted that that was in your path.
Yea, we joke that they're life coaches because they've encouraged us and educated us all
at the same time.
So he got a cochlear implant and then, when did the brain stem implant enter the picture?
Who first told you - and I think I know the answer. Who first mentioned the brain stem
implant?
Doctor Buttman is the first that mentioned this.
And Doctor Buttman is the Surgeon at UNC hospital.
Yes, he and a team member of his who's a neurosurgeon - Doctor Matt Ewin - are the ones who are
doing the clinical trial. They're the two surgeons who put in Grayson's implant.
But Dr. Buttman's the - he's really the pioneer of all this at UNC hospital. I don't know
what his official title is - it's head of surgery or head of the department, but you
know, he's been working on this trial for years to get it thought through and the protocol
written and everything so they probably talked to us......it wasn't before the cochlear implant,
but I'm pretty sure they had in their minds that when they met us that we were - that
we should be on their short list, but we probably went through a few rounds of audiology screening
after the cochlear implant and were with Dr. Buttman on just one particular day and you
know, the results were not proving to be very good with the audiology report with the cochlear
and we were in his office and that's when he - that's when he said 'look, we have another,
really another path here that we've been working on that's called an auditory brainstem implant,
how does that sounds?' and you know, he laid it out pretty simply what it was and I remember
just thinking, 'that's crazy talk, what you're explaining to me I don't even know how that
works,' but he was so excited to talk about it, we very much felt like God was going to
put things in our path to restore Grayson's hearing and it felt very much like divine
intervention for us. So we sort of coupled those two things together: the confidence
of Dr. Buttman and their team, and then our sort of spiritual confidence about it, you
know, we were ready to go once they were ready to go...and so from that point it probably
took another maybe another year, well maybe not a year but maybe another year or less
- at the time they didn't have...
...Oh, FDA...
...they didn't have FDA approval when they first started talking to us about it, but
they were kind of testing the water to see if we'd be a go once they got to be a go.
But ultimately, in January of this year, 2013, they got FDA approval, so they - the minute
they were, the minute they were approved, they called us and we started, we started
the process. And then in April, we had the surgery...so very quick.
Alright, and so in April he was 3 years, 9 and a half months I think we talked about
earlier and he...got it
Yea, and that too was sort of another element of this that, in Dr. Buttman's protocol, the
child needs to be between 2 and 3 to really allow for the early exposure to sound. Uh..and
so we - his plan really just
...and then all this came together at that precise right time at that three year window.
You know, it's just remarkable.
That's marvelous - good, marvelous story! And...I know made use...eh....so, as of today,
he's had the brain stem implant between five and six months....
Right, right
...plus a little, right?
Right.
So, we are watching his progress. Okay, so that's sort of the chronology of the events
that get us to where you are now. Let's go back and look at education: What do you remember
about his speech and language progress prior to Cued Speech and now, after Cued Speech
- Nicole?
I didn't really see much speech or language development progress prior to cued speech
...Okay....
He probably signed a few signs, but nothing...
Maybe ten or twenty...ten or twenty words um...
Signs
Signs, yea. We started out with Signs initially just to try to get him engaged and it did
not go very well, and then right around that same time we got involved with the Addison
family and learning Cued Speech. We joke about it now - it was like a crash course, our cued
speech transliterator now, Deena King, literally just come over and teach us on our back patio,
every week for some number of weeks, and then we got exposure at Cue Camp too. And we started
cueing with Grayson and within weeks it seems - or months it seems like - he was up to fifty
or sixty words, he could say the whole alphabet, count to ten, do his colors...I mean, it was
so quick and funny enough that Cued Speech I think saved us in the hospital because we
were just - we were in the hospital a long time um...when we had his brain stem implant
surgery...we just went to school every day with flash cards, letters, numbers, you know,
anything that we could get him to just...take his mind off of what was actually going on.
So, yea, it really took off with the Cued Speech.
And what - we didn't cover this before - when you found out about the deafness and you had
the long conversation with Sharon Addison, he was at what, about...
He was probably 10 or 11 months old or 12 months old, yea, we just sort of got immersed
in all the information almost instantly right when we needed it.
And then you started to Cue shortly there after thanks to Deena.
Right.
Deena works for Charlotte Public Schools...
She does.
Grayson is enrolled in the Charlotte Public Schools and uh....so there was a difference
that meaning was clarified which, of course, is the purpose of Cued Speech. Any stories
about that time? Events that you remember? ..... Stories for a later time?
Yea, well I remember - I remember the first time we, literally, were able to go through
an entire box of flashcards and he would sit still for an entire box of flashcards and
cue to me every card that I held up. And then the other thing that was - we got an Etch-a-Sketch....it
wasn't an Etch-a-Sketch, it was a...
A magna-doodle!
A magna-doodle and so we used that to do letters. I would write the letter on the magna-doodle,
and then get him to cue to me what it was, and then we'd erase it and write another one
and so, you know, going through the alphabet, large letters and small letters, for the first
time, and we're talking about, you know, a three year old here - a two year old, a three
year old - you know, it's amazing to see how quick he could pick up the cues, and lip read!
That came very, very quick too. I don't know how much he can actually read lips without
cues at all, but it's already a lot.
Good, very good. Alright, now how about his response to sound? What happened before and
after? Well either the cochlear implant or, certainly, the brain stem implant....let's
just go with the brain stem. What do you remember about his awareness of sounds before?
Prior to the AVI there was no awareness to sound...it could be extremely loud and he
would never startle to sound, just....he was oblivious to sound.
Just wasn't part of his universe.
And there was no speech. No speech development at all.
Yea
Okay...and after the brain stem implant when was that first 'ah-ha!' moment?
There's been so many...
There's been a lot!
I mean the day of the activation...
Yea, I mean, the day of the activation was...just remarkable in that sense, there's been a video
that's gone viral where - he was just so excited and we weren't sure - and even the surgeons
and the audiology teams said 'he's going to either really like this or really hate it,
and so it was very very touch-and-go there, but he was just so happy with sound - that
night when we got home format he activation, he sat down in front of the television for
the first time and turned the TV on with the volume up and as soon as the TV came on, he
pointed at the TV and made this -- like he'd never heard the TV before and was telling
me 'What's that? What's that?' Um...and there's just been a lot of other - the first sort
of couple of weeks was very cool like that. There was an incident where he acknowledged
that he heard his brother Ethan - and they're about the same age - he heard Ethan crying
for the first time, and Ethan was in another room so he couldn't see Ethan, but he heard
him, and he pointed toward the room that Ethan was in and sort of Cued and Signed that 'Ethan
is crying,' and that was really amazing for us. And there was another time that, right
after his activation, I was holding him and walking around a church, and yelled across
sort of the corridor at the front at someone that I knew and he almost jumped out of my
hands because he'd never heard something that loud before right in his ear because I was
holding him so...it started out like that um...now, I think what we've discovered that
he's just becoming a lot more inquisitive and so he asks - he points to his ear and
he asks really constantly when he's hearing something new so that you'll tell him what
it is, and you can really see him processing 'What is that?' and 'let me try to register
that,' and hold onto it.
And, Nicole - any more stories that you remember?
Recently, now he has progressed to understanding some speech. One day here, recently, I told
him to, I just said, 'Go get the ball,' and he just turned around and got the ball. So....
Oh, okay.
And then one day Lynn said 'well we probably ought to give him a bath,' and Grayson walked
over to me and Cued, 'take a bath?' So, we know that now he's starting to understand
some speech.
Some words...good. Very good. Sounds like typical development - speech and language,
which is wonderful. Um...well, alright, so we've seen from a very...meager beginning
to all the good things that are starting to happen. He's only five months post-brain stem
I mean, that's wonderful. Alright, as a service provider I want to ask you; from right after
his identification or right after you got into 'the system' which we're all familiar
with in North Carolina, what types of service provider helped you the most?
I think um...'Beginnings' was helpful in just helping me work through the initial shock
and 'where do we go from here?' And then we had his early intervention teacher who was
just....so supportive of what we wanted to do and just...helpful all around.
Yea, and then from there, once he got into public schools, we were very blessed to have;
one a Cued Speech transliterator that really operates as a full-time educator too...but
we were also lucky that our Deaf Ed teacher was auditory-verbal trained and doubled as
deaf education & speech, and then our speech therapist can cue so she being able to do
both Cued Speech and, basically, a speech lesson - unaided by another transliterator
- goes a really long way. She's taught Cued Speech children how to speak in addition to
other hearing impaired kids. So, we've had it really, really good so far.
Well that is wonderful, no just a single service provider, but you've had an array of excellent
- I think - services for...that's marvelous. Alright, from all of those people - Sharon
Addison you talked to first - do you remember any, you know 'one-liners' that just really
hit home with you when you were confused or overwhelmed or - somebody said.....'dot dot
dot' ...just cut to the chase, made sense to me.
Yea, I don't remember who said it to be honest, a lot of people said it, but for me um...once
I had a good enough understanding to be hearing impaired for life, you know, my one mission
was figuring out how to get Grayson to be fully independent. And so in talking about
Cued Speech, one of the things that really stuck with me was the ability to combine Cued
Speech and adhering implant to enable lip-reading and, eventually, speech and to me that was
the 'click.' That made sense to me. If I could teach him how to read lips, he could go into
a restaurant and have a conversation with someone to order food. He could get in a crowd
of people and have a conversation or at least understand the topic that's being discussed
and not just be totally in the dark. and so that was one of the things that really brought
to life the value of Cued Speech.
To me I think it was the transliterator brought up a very important point that ASL is based
on a foreign language, and it is a foreign language, it is not English.
The American Sign Language versus Cued Speech kind of equation, what brought it to light
with Nicole - and me too, but I think she picked up on it pretty quickly - was American
Sign Language is a language and it really limits your vocabulary and your speech development.
It's a language unto itself and you can try to convey a message almost in as few words
as possible, and one of the things that really registered along that process was that our
understanding of American Sign Language kids struggle with reading beyond a third, fourth
or fifth grade level; the just don't know all these words...where as Cued Speech you
learn every word in the English language, and even other languages...and so that was
a big deal...to know that if we wanted to develop speech and language, we needed to
probably go with Cued Speech and work there.
and English...well, do you have any suggestions for service providers who are out there or
for parents who just heard that their child is deaf? Is there anything you'd like to tell
us from a parent's point of view?
Yea, I think the service provider side, the auditory verbal piece, even if that or the
parent's goal is back and forth on how they want to approach it, having training on your
fundamental discipline...so we had a Deaf Ed teacher who got auditory-verbal training,
which is probably more in the speech-pathology line, really opened a door for us that wouldn't
have been there and she had it because she kind of just wanted to enhance her education
so...that's probably something that we encourage service providers to look beyond your fundamental
discipline and integrate in some other techniques and other things can be beneficial to the
child you're working with.
And training is available in auditory verbal therapy in the listening and spoken language
specialists can learn cue, you know, it's out there if you're motivated....there's a
place so...okay, get some more training; don't just go on what you got in school twenty years
ago. Okay, and, alright. Along those lines, what would you tell parents? If you could
tell parents only one thing, a one liner for them, what's the most important thing you
think parents of newly identified children should know.
I think - it may be this, hopefully, I would hope I guess that all parents would operate
under this principle, it's be proactive. Be proactive and don't give up. We I believe
we were as successful as we have been because we got out in front of everything as much
as we could. I mean, we started meeting with the schools, school psychologists, educators,
before -- when he was one. I mean, we wanted to lay out a three, five, ten year sort if
'plan' from very early. And so I think being proactive got us - really what it did is it
that same question of everybody until you finally figure out what you want to do. So,
be proactive would be the one, and then 'don't give up' when you get no answer from somebody
because if you, if you press in the right way, and press hard enough, and know the law,
you can get what your child needs. Depending on the school system you are working with
and how their philosophy is, you know, they're either going to help you or they're going
to do the minimum and so I'd say don't give up and don't take no for an answer when something
you believe that you want is out there because we've had to push pretty hard and be very
firm and we've gotten the things that we've needed. We got it because we knew, again,
what the law was, who to ask, what to ask and we didn't back down from, you know, from
Good. I like that from the professional side of the table because we see miracles because
parents would not take no for an answer. Very good, alright. Did Grayson's intervention
program change after he got the implant? The brain stem implant?
Yea, it really - it did. We initially, we were really just focused on the language side,
really just trying to get him ready to go into kindergarden, so when we got the implant,
it then really became a combo of the language and Cued Speech and Audition and so as he
grew, just from a hearing stand point and getting that exposure, our education plan
and the way we sort of coupled the services just moved right with it to align what to
So how are you into the new thing - Audition - because he can hear now with the existing
intervention with Cued Speech...how'd those come together?
He can...so we actually now combine Deaf Ed and speech therapy together, where they could
be totally separate services that come and meet with the child and pull them out and
do their service separately, we have a kind of two-form approach. We have speech and Deaf
Ed together and then we have a separate speech session that focuses solely on the Audition,
okay? So the first piece being still very much with language and speech, the second
being speech alone. We found that to be a good model.
Good, alright. And you're seeing the rewards of your progress
Alright. Well, and that is, of course, all what we want to do. Um, now, there will be
more parents after you and Nicole who will have children who will have brains stem implants.
Based on your experience, because if he wasn't the first he's right out there, is there any
helpful hints to parents about integrating Audition and Deaf Ed. and Cued Speech - what
would you tell them, the parent of a child with a brain stem implant?
Yea, I think, a brain stem implant or a cochlear implant, i mean, for us, we just couldn't
see...we couldn't see him going through life not hearing. And so I think the first thing
i would say is think big and think -- hope for everything. There are certainly other
opinions on how to deal with deafness and whether or not it's even appropriate to sort
of implement a foreign mechanism to create sound and, you know, our philosophy was it's
best for the child. We thought and really believed it was in his best interest to introduce
something 'foreign' so to speak to create a way for him to hear as opposed to leaving
him the way he was and living the life in a, you know, sound-free world...it just didn't
feel like that was the way to - that - to create an environment to be successful and
you know be fulfilled and so I think we'd want parents to know just really, really get
involved early, get all the information that you can, hope big , um, get yourself synchronized
with professionals...We're just fortunate that three hours down the road we have the
very best in the business, and a lot of families don't have that and I wish that they did.
But even if they aren't that close, they can figure out a way to get that close or to use
another program...the auditory brain stem implant and the cochlear implant if the child's
anatomy allows for it, you know, is phenomenal and does allow for the child to individually
hear and, you know, speak.
Would would you tell parents who are either - who already cue or have heard about Cued
Speech and what it can do in terms of the child's education and language learning, but
they also want their child to learn to listen. Is there anything else as far as the integration?
Yea, I think bringing the Cued Speech with the hearing works really, really well. I mean,
Grayson now that he;s starting to vocalize, still cues what he's saying. He won't just
say it, he really, you know, feels connected to the cuing, and you know, we really plan
to keep cuing very much a part of our family and even our - you know - our sort of life
with Grayson because he's always going to need a way to communicate if something goes
wrong with his implant. So we don't intend to break away from it. It's very much been
a part of what we're doing. And I tend to think it will encourage him to learn AMerican
Sign Language. I mean, there's no -- the same way you'd encourage a child to learn any foreign
language, really. There's no reason not to and that can open a door for him with sort
of a broader deaf community, so...there's a lot. There's a lot out there and I think
Good, very good. Do you have particular procedure or sequence or system that you are working
Yea, so we're really focused on him hearing and understanding speech. which, we didn't,
it might sound like a common sense thing when you sort of step back from it - the speech
but it's so complicated so we use this sort of 'sandwich' method where we sort of say
something and then cue it and then say it again so if we're in sort of a school mode
and we're trying to do something with him, or if we're just in every day life, having
dinner, taking a bath, going to school, or whatever, we do this sort of 'say it - cue
it - say it' method so that he hears what we're saying, and we'll get behind him so
we can see it because again, with cued speech he can read you lips so he's gonna cheat if
he can, and then cue it and then he'll recognize the cue, and then say it again. So 'say it
Yea, yea. we didn't come up with it you know, it's another method we've been taught.
Yes, been around for a while, indeed. Well, we are about to wrap up. I just have to say,
I did not remember until I knocked on your door today that you and Nicole were in my
beginner Cued Speech class at Camp Cheerio, and when I looked at - I went 'I know this
lady so that was a year and a half ago in 2012, and you have also been very good students...alright.
something good he did because something, sometimes it's always 'Oh, there's so much he hasn't
done yet,' but they do lots of good things. Tell me something good he did.
Yea, he, I wasn't there this happened at school with his Deaf Ed teacher but the first time
He said it and he knew that he was saying it and he wanted to say it to everybody so
he literally went around to all the children all the teachers that day, at home, we got
home and he said, and he was cuing it to me 'bye bye' uh, and just constantly and he,
you that's just been, that's been neat and then he's, I think we mentioned this earlier,
where there were, there was some applause in a crowd for something that was happening
on stage and I guess that was the first time he'd ever heard that much clapping. I mean,
he heard us clap before, but never a crowd of several hundred people clap and I mean
it just startled him and he's pointing at everybody, he's wanting to know what that
is and then I can remember the first time that we took him to church after he got his
leader kept on playing guitar and he just stopped and stared at the man playing the
guitar and he started mimicking the guitar and pointing and asking, 'Is that a guitar?
Is that a guitar?' Uh, so he just, every day is something new, something neat. Um, this
And they are?
Yea, especially the NO NO so, [laughter] so uh, yea he's really trying to, trying to you
Good. Well it's been my pleasure to talk to you and to hear about this little guy and
just, many more happy days! and great development in Audition in both speech and language.
Yea, thank you very much!