ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

Deaf Sons! Cochlear Implants! Sign Language! Learning English as a 2nd language! What’s a Parent to do? 
EHDI 2019 – TOPICAL SESSION 6, 7, & 8 – INTERNATIONAL F
MARCH 5, 2018
2:15 P.M. ET

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 	(Writer standing by.) 
>> SPEAKER:  Okay, we're ready to get started.  I'm Karen, I'm the moderator.  Please, if you need anything, let me know, and please remember to turn in your evaluations at the end.  Thank you.
>> SPEAKER:  Good afternoon, everybody.  Thank you for coming in today.  You are in, I had the good fortune to work with Adam and Isra and their two sons, and they have a remarkable story.  You'll see for yourselves just how good of people they are and how much they have done for their sons, and, um, Adam, who is not a public speaker, but is, has promised to get up here and give it his best go, and I am so proud of Adam, that he's willing to do it, and Isra is going to help out as needed.  Adam?
(Applause.) 
>> SPEAKER:  Welcome, everyone.  My name is Adam, and this is my, um, beloved wife, Isra.  Those are my two sons.  The oldest is Habeeb, he's 7, and Hamza is 4.  Hamza basically runs the house, so let's just make sure if we all know, if he says something, we just say what he does and go from there.  He's the captain.
(Laughing.)
>> SPEAKER:  You know, I just wanted to start off with telling about our journey, you know, with having two deaf children, that it wasn't easy, you know, and I can honestly say that it was a difficult road, and to this day, it's still never ended, you know?  Every day that goes by, it's always going to be a process, you know, that deafness is, um, it's a part of life, you know, that it's nothing to hold you back.  You know, there's times where we don't really want to hear what people are saying, so deaf is okay sometimes, you know what I'm saying?  But, you know, not to be able to hear, you know, something, it's, um, it's really hard to take it in.  You know, when you're born in this world, you're automatically given, um, sight, you're automatically given hearing, you're automatically given thinking and ability, but when you have that thing taken away from you, you have to use your other sources to make, um, other things improve, you know, and my kids, my family, personally, there was never any, um, deaf or any hard of hearing in my family, and Isra didn't really have that problem either, so to be honest with you, when we were first inflicted with this problem, it was basically like a right hook to my face, and I didn't know what was coming, you know, and, um, I ain't going to lie, it was hard, and to this day, you know, I've inspired people to know that you're never alone out there in this world, with this kind of problem, you know?  We had the right people always coming to us and lifting us, and till this day, I'm thankful that God always looked down at me and Isra and these kids and never stopped listening to my blessings or never stopped hearing me calling for Him.  You know, you can't, He can't hear you, if you're not calling, basically, you know what I mean?  And then this guy right here, I don't know what part of heaven he fell from, but he landed in the right spot in our house, and that lovely lady over there, Ms.  Blacks, we refer to as Ms.  Blacks, but she's Jill, she was the one that never stopped praying for us, you know?  I can honestly say that God really sent us these people, and till this day, they have afflicted my family with love and nothing but honest‑to‑truth goodness, and I wouldn't be able to be standing here, which, honestly, I never thought I'd be standing in front of a group of people, telling my story, when I was crying like a little baby in the corner, you know, and, um, I wouldn't be anywhere, anywhere in my life, if it wasn't for this beautiful girl right here.  
She stole my heart from the minute I met her, you know, and I don't want it back, she can have it, but she's everything to me, and she is the true heart of my family, you know, she really is the rock, and there's nothing she can't make me do without her.  I just want to start off with presenting who we are, but I just want everyone to know that there is a lot of famous deaf people out there, you know, which when I was first afflicted, I didn't realize that there was so many special people that were deaf, you know, just like, um, Beethoven, I mean, his best work was when he was deaf.  You know, I didn't realize that till, further, I start looking into things.  Thomas Edison, the man who invented the light bulb, was also deaf, you know?  He considered himself to be called deaf, he considered his best work when he was deaf.  Helen Keller, a perfect example, she was blind and deaf, and, I mean, this lady did not stop with all the stuff she's done.  I mean, from the beginning, I mean, she accepted an academy award at the age of 75.  In 1961, she received an award for lifetime service.  In 1964, she was awarded the presidential medal of freedom by Lyndon Johnson.  I mean, this is a lady who can't hear and talk, and there was nothing but awards given to her, you know, and there was a time, when Habeeb was first diagnosed with this hearing loss, the hearing expert told us that my son was not going to hear, you know, she told us that this boy, sitting right in front of you, could only operate by sign language, and it was told that he was only allowed to hear an airplane.  
His best hearing was an airplane.  I mean, if you can't hear anything but an airplane, we've got problems.  You know, I remember when he was born, he was born, um, November 16th, 2011, I mean, it was probably one of the best days of my life, besides the day I met this sweetheart over here, you know, my rock, but I remember when he was born, I remember my first night with him, I held him, and all I can feel was this, like, protection over him, like a lion is to a cub, and I said I will protect this boy from anything, so, God, help me, anything that comes toward his way, I'm here for him.  I'll teach him, let him grow, be successful, and be happy, and my first book I read to my son was Goodnight, Moon, and we still have the same book to this day.  I remember reading it to him.  Within the next day, they took him for a hearing test, I remember, and, um, I made nothing of it, it was just a normal thing to us, they're taking him for a hearing test, didn't think anything of it.  Some hours later, he came back, and the lady had this grim look on her face, but I didn't really, it wasn't, like, a big thing to me.  She told me, your son failed the hearing test.  I took it in, okay, there's got to be a reason.  She told me, don't worry about it, he was a c‑section child, he's got some kind of fluid in his ears, no problem, don't worry about it, he'll be fine. 
 Basically, she gave me a stamp and told me go on your business now.  Give it a month, the fluid should clear, we'll take him from there, and we'll go, you know, you'll see your next answer.  So, they took us to some place in Hazel Crest, a month passed by, and Habeeb was really small, a little sack of potato to me, a little bag of Idaho potatoes, and I remember, we went to some place in Hazel Crest, and they told us that, you know, they would do this ABR test while he was sitting in his mom's lap, just to see what the problem was.  So, we sat there, he had his, um, he was being held in his mom's lap as the lady went through the test, you know, and I sat there, you know, I've seen a lot of stuff in my life, I've seen a lot of bad things, you know, and I've always managed to just go through and not be scared, but I got to tell you, that one moment in my life, when my wife was holding my son and I sat there, I was so scared out of my mind, because my heart, something was wrong, I felt it.  That was the first time something came over me, and I felt it, I knew something was wrong.  Then this lady came back, and she told me that your son has a problem, he cannot hear anything louder than a bulldozer or an airplane, told me your son is probably not going to talk, and she told me that sign language would be his thing.  That's it.  She basically, you know, I hate to say it, but basically, she planned out my son's future right in front of me.  I remember that moment, I literally ran out the building, crying, crying, asking God why me, why us, all I'm trying to do is take care of my wife and kids, I'm not a bad person, I don't steal, I don't hurt nobody, and I came back, walking in, wiping the tears from my eyes, this lady told me, you know, this is basically what's going on right now.  She basically gave me a statement of what's going to happen to my kids and where do I go from there, but I didn't want to believe her, you know what I'm saying?  I needed a second opinion.  So, we took Habeeb to Laurie's Children's, we went from there, they told us they would put him to sleep and do, like, an ABR test on him and kinds of stuff.  They made it look like it was so easy, just go ahead, hand your son over, put him to sleep, do some more tests.  I literally became petrified of the hospital, you know what I mean?  I was, I'm 33 years old, I don't get scared that much, you know, clowns still scare me, I'm sorry.
(Laughing.)
>> SPEAKER:  But, you know, there's certain things, IRS, no, I'm just kidding, the IRS doesn't scare me, I pay my taxes, but when it comes to your kids, I'm sorry, anybody could throw in the towel, your kids are your thing, you know?  I bleed for them, this is my eyes and my heart, these two guys right here.  You know, I used to hand my kid over, and they'd tell me, it'll be all right.  I remember when we came back, we did the test, the doctor plain out told us your son has severe hearing loss, you know, this is it, I'm taking this from Laurie's Children's Hospital, I have to just deal with it.  What's your next step?  They told us, you're not alone, we have a lot of help coming towards your way.  They told me we're going to send you help from Easter Seals.  It was a little thing they would send us, people to come talk to the kids and let them hear and speak.  We'd fit your kids with hearing aids, and we'd go from there, you know?  I basically had to deal with it.  You know, I was going through depression, I cried a lot, and I started to think to myself, if I'm not strong for my kids, who's going to be strong for them?  So, basically, I had to pick myself up, and I wouldn't have picked myself up if it wasn't for her, you know.  Behind every great man, there's a great woman.  She's not behind me, she's on the side of me right now, but she was the reason, you know, and I remember just going back and forth, we used to go to, I mean, I didn't go to downtown as much as I went to Laurie's Children's Hospital, I mean, I got so used to 9094 because of that place and Lake Shore, I mean, I couldn't believe how many times I kept going up there, and every time we'd go up there, I'd hold her hand and we'd just pray.  I don't know how many times I kept calling God, but I think after awhile, he wanted to put an answering machine for me, because I kept calling and calling, and little by little, we were progressing, but then Easter Seals came, and the day they came, this establishment, they work miracles, they really do, they help any kind of kid, deaf, blind, you know, if they can't walk, they're there for you.  
The first time they came, I remember, we had a rough night, Habeeb was really sick, we didn't sleep at all, I don't remember sleeping at day, maybe she slept, but I didn't, and I remember, I was the crabbiest person to deal with, and I'm not crabby, I'm the sweetest guy, just give me a cup of coffee, and I'm your friend, but I remember the day she came to the door, she had a translator, young lady, she came up, knocked on the door, I answered, she told me I'm with Easter Seals, we're here to talk to your kids, this and that.  I wasn't feeling it.  I really wasn't.  I didn't like her attitude, and I wasn't sleeping good.  I told her, listen, honey, come back another day.  I told her have a nice day.  Next thing, you know what?  I mean, everybody says they don't fear their wife, and they're not scared; I'm scared of her, but only because I love her.  My wife said where did they go?  I told her I kicked them out, I don't like her attitude.  From then on, she told me to butt out, this is none of your business anymore, and, I mean, it wasn't about her sticking her nose in my business, it was about what's good for the kids, you know what I mean?  It wasn't about me anymore, it was about them.  When mom comes in and says stuff like that, take two steps back, don't say nothing, and go from there.  I took my two steps back, and I didn't say nothing.  I would be at work all the time, the therapy would come in, and then they told us, we'll send you another therapy, speech therapist, if you're not happy with the hearing therapist, whatever you'd like.  
They didn't tell me why did I do it, they said whatever you'd like, because they knew we were grieving.  I was grieving, you know?  Nobody was dying or anything, I was grieving.  It was a hard situation for me, you know?  Then, God behold, he sent us an angel.  I mean, he's a very tall angel, by the way, he's about 6‑something, but, I mean, this guy, from the minute he stepped into our house, he lifted us with nothing but hope, you know?  I mean, the first time he came to my wife, my wife really didn't know English, she did not know English, my wife was very, she just came here not too long ago, she was already battling with the kids, and she was picking up English, but not as much, so at the same time my wife was there to learn English and speech and sign language, all at one time, sitting with Dan, and I would always come home and ask her how did it go, she'd say it's doing good, and little by little, Habeeb was really starting to pick up things, picking up objects and speaking, all from Easter Seals, and after time went by, Habeeb was old enough to have a speech therapist come in.  Once again, Easter Seals sent us somebody out of the blue.  I mean, we refer to her as Ms.  Blocks, because the kids call her that.  She's Jill.  Jill, for a second, can you stand up?  This lady and this man ‑‑
(Applause.)
>> SPEAKER:  Never stop with anything they've done but help my family out.  I remember, there was a time where I was, I'm telling you, I was petrified of the hospital, I was scared, you know, I was very, very afraid, because every time I would go there, I'd get nothing but bad news, so after awhile, I just said, you know what, I don't want to go, but I had to go for my kid's sake, my boy needs me, and then when I was basically backed into the corner and getting punched on, and I didn't stop, you know, somebody, a voice came in, it was Dan, Dan literally went to one of our hospital visits with me.  I'm driving to Laurie's, and I'm scared and petrified, like a little cat, you know, running away, and there he was, sitting in the lobby, waiting for us, you know?  I came, after that, bring on the hospital, I didn't care, I had Dan with me, my wife was ready.  Dan was the wings I needed to fly with my kids, you know, and Jill never stopped.  They never stopped for us.  You know, as time went by, Habeeb developed another hearing loss.  It got to be, you know, really grim for us.  Once again, Jill was always there, it's going to be okay.  I mean, if I got a dime for every time I heard it's going to be okay, we're going to get through this, there would be a Bentley right out of here, a nice Bentley, but you know what?  That we're going to be okay is here today, because we are okay.  We never stop.  
You know, little after time, they threw us a thing called a cochlear implant, and this thing, I got to tell you, once again, scared the heck out of me, because of just the way it looked, you know?  This required surgery, you know?  It was a scary feeling.  You got to put your kids under the knife now.  It ain't you.  Who wouldn't want to take a knife for their child?  I would take a burning house for my children.  I will walk right in there and save them before anything, a piece of hair comes off their head, because I love them, and I love her, and it's never, ever going to stop.  After time went by, we were blessed with Mr.  Hamza, the President.  You know, Hamza, when he was born, I wasn't afraid of is he going to have hearing loss, didn't cross my mind, I just wanted my son to be happy and healthy.  You know, we took Hamza for his test, he had the same exact problem happen, same exact thing.  Him and Habeeb basically have the same kind of deafness going on, but you know what?  Because of all the support I got from Dan and Jill and everybody else, from Easter Seals and all that, we hit the ground running with Hamza, we weren't afraid.  Get us the cochlear implants, let's start the cochlear, let's start the hearing aids to get to the cochlear implant.  
We had a bridge of what to do.  We never stopped, and then as time went by, with Dan and Jill, we had to leave Dan and Jill and put the kids with school.  Habeeb was the first to attend Oakwood Elementary.  I mean, putting him on the bus at 3 years old, this little guy, ain't no bigger than this, going on the school bus, and I got to wave, I mean, he's only 3, but in order for us to get him to be where he's at, that bus has to have him on it, so there was no settling.  Everything out of fear had to go.  Habeeb went on that bus, and, I mean, this guy went on a journey.  This guy is, he is a true example of what a person can overcome.  I mean, this guy, from the minute he was born, was told you're not going to talk, you're not going to listen, settle with it.  You can tell Habeeb anything, he'll read you any book out there, he'll spell any word for you, he'll do any math, because we never gave up on him.  Hamza is the same thing, because we've always had this help come to us, whenever we were down, there always seemed to be a hand lifting us up.  I don't remember hitting the pavement anymore, going down as I got hit, because I had Dan and Jill, and I had the whole Easter Seals and the Southwest Corps that was always there for us, and I look at them now, I know they're probably having an argument on what kind of mermaid they're going to draw or anything, but just to see my kids being able to speak to each other, and, I mean, when I turn, after I've had a long day of driving, because I'm a truck driver, so there's times where I'm driving for nine hours a day, and I'm beat out of my mind, you know, and Dan's talked to me sometimes when I'm dealing with 294 traffic, my hair goes up, it doesn't go down, it goes up from all the stress, but when I get home and I turn that door and I hear them yell, papa's home, papa's home, running to my arms, when I can hear them say that, we love you, we miss you, I know I did my job.  
You know, pretty soon, they'll be walking across their stage with that graduation, because he wants to be a dentist already, Habeeb, Hamza, I don't know what kind of thing he's going for, but President, hopefully, Congressman, whatever you'd like to call it, but, um, I know that we've done our job, you know what I mean, and, um, no matter what defines you in life, you'll always be able to get up, you know?  I know that people say, um, deafness is, um, it's some kind of culture, you know what I mean?  When they're deaf, that's it, they're deaf, that's the way they are.  You know the sad thing, when you see somebody deaf, you see this thing that's just, it's a disability, you know what I mean?  They have no way of hearing.  These people can read lips.  Imagine being able to read lips and knowing what somebody's saying when you can't hear that, you know what I mean?  That right there is amazing.  So, this is not something that will hold you down, this is something that actually evolves your senses as a person.  I know, for a fact, my kids can observe things better than anybody else out there, because of their deafness.  Habeeb wouldn't have his implant on, and I used to tell him to do something, and he would read my lips, and he would know what to do.  That's with no sound coming at him.  I mean, I don't know what miracle that is, but it's right there, you know what I mean, and through all of that, I wouldn't have been where I am or standing where I am if it wasn't for her.  I mean, she sat through every session, she never stopped, she never once said no, you know what I mean?  
When the session was over, she was learning language, English to her, and learning games and things to do.  She never stopped and said, no, session's over, let's, she kept beating it into them.  Even till now, I got to go read to Hamza, Hamza's got to do his spelling test, hey, can you get off the couch and do a spelling test with Hamza?  Okay, I'll get off the couch and do a spelling test.  Hey, can you do me a favor?  Hamza needs you to do this for him, can you do it?  I'll do it, no problem.  You know, she never stops, she never settles for anything but spectacular, you know what I mean?  And I don't know if the parents in this room are still grieving like I was, but don't grieve about this.  This is, it's a true blessing, you know?  Having, um, you know, I used to say having this problem, it's a punishment.  Why?  I kept asking God why.  Why?  Why, Lord?  Why us?  It wasn't why us, it was for me to be a better person.  You know, I'm standing here right now, speaking in front of you people, I didn't realize that would ever happen.  You know, I remember just brief points of depression I used to go through, just, I don't know why, I was just, I was grieving, because I couldn't fight this thing, I just had to deal with it, you know, but as time went by and they would pick up the language, and the way they are now, I couldn't ask for a better blessing, you know what I mean?  These guys are really, um, a true form of miracle, you know, and the sad thing about this whole ordeal was if that lady, whoever she is, wherever she's standing right now, if she didn't do what she did bluntly and told us this, I wouldn't be standing where I am right now.  I thank her.  She wasn't, I thank this lady for saying no, this is your kid's future.  No, honey, my kid's future are with me and my wife and God, you know, that's a true miracle right there.  
You know, I don't care what anybody says or anybody defines anything, it's not a disability, it's a way of life.  Nobody should ever be put down for what they have against them.  You know, unfortunately, this culture we live in is very vast with, um, technology, and there's a lot of bullies and all that going on, and you'll be afraid for your own children, because you're going to say, man, if they grow up with this disability, will they get picked on?  Will they get beat up?  Will they get ridiculed?  Let me tell you something, Habeeb is one of the coolest kids in school.  I mean, this guy has four different girls arguing just to sit with him on the table.  Four different girls.  Not five.
(Laughing.)
>> SPEAKER:  Four.  I mean, I don't know what kind of problem I got coming for me in the future, but there is nothing that, this is not a disability.  The thing is, we have to go past this as a person inside.  Whether you're a parent grieving, remember, there's a future for your children, but in order for you to get this future going, you have to step up to the plate, you have to swing, you have to, you don't want to hit a home‑run, but you have to grab that baseball bat.  You can't sit in the dugout, you have to get on the field, you have to go up to that plate and hit for your children, or there will be, I've seen it myself.  I'm just saying, as a parent, you know, you have to, you literally have to get up to the plate, you know?  If there is a parent in here right now grieving for their children right now, if they don't know about the deaf culture, it starts with you, for their speech and their language.  You are the bridge.  The implants will come, but you have to beat them in this, this thing in their head all day long.  If you don't speak to your children, if you don't give them things to do, they are not going to speak, you know, and I'm telling you, the reason these kids have that beautiful voice coming out of them is because of her.  She never stopped.  
You know what?  When she tells me to throw out the garbage, I don't argue, because she's worked miracles for my house.  She's a miracle‑worker.  I'm blessed to have her, and I hope my presentation was, um, was good to you guys.  I just wanted to share one thing, a last quote I kind of wrote.  Let me see if I can find it.  Hold on.  You know, this is to any of the parents who are grieving right now.  I know life is always going to be fleeting from us.  You know, if you're ever distressed, just cast your eyes to the summer sky.  When the stars are strong across and turn night into day ‑‑ off mic ‑‑ I know we did.  We did it.  They're talking, they're listening, they're doing it all.  I love you, baby.  Thank you all.
(Applause.) 
(Off mic.)
(Applause.) 

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.