Life with One of the World’s Rarest Syndromes (Hallerman-Streiff)

are you ready for your interview if anything is there anything unique about you why are you unique like something that's special about you do you ever feel envious of your sister but how would you describe your sister I was at school Stowe and I saw people like together and whatever it just made me feel sad I don't have one what's it like for you when you hear Michelle say that she wants to follow in your footsteps well I think is really nice because it means that I have good stuff footsteps to follow I guess you know like it's not something that she wants Bigfoots yeah Bigfoot's outside it's it's a a path that she likes and she likes the person I've become so that's that's nice to hear what do you want someone to think when they see you for the very first time do you want me to dance around I can't believe you're yelling at me am I not entertaining I explained to you why are you yawning you know I'm a sensitive guy I want to start crying in a minute when somebody sees you for the first time yeah yeah what do you hope they think I was walking from my room across the hall to the bathroom and Michelle was in her room alone with a full-length mirror and she didn't know anybody was there and she I think she had on a new outfit or something and she just looked at herself in the mirror and she just said I look so good today and like I don't even remember that I know because that's like a daily thing for you but a lot of people in this world or not do not have that kind of vision of themselves and so I think that is one of the best things about you because you are just so unapologetically yourself specific my next question - what question 24 hey would you describe yourself as sassy and whoever said that it's a liar there's a lot of words that we could use to describe Michelle um I know she doesn't like sassy so I will say she is strong-willed and empowered and has very specific opinions about things and very smart yeah well I just think you are very you know what you want and you know what you think and you know your opinions and you want to you want to assert them at every opportunity would you mind sitting up for this one thank you thank you thank you thank you thank you do you like goofy people yes why okay I'm gonna ask you question number 1 million seven hundred thousand and eighty two of this interview are you ready hey what are you laughing at I'm serious I'm keeping track no you're gonna place you don't believe him have you calling me a liar yeah I'm being serious over here no I do not call you a liar but you went from ten to 365 maybe you're calling me in an embellisher oh I'll call your skipper you calling me you calling me a skipper yeah I've never skipped a thing in my life you're skipping I would never skip a number now are you ready for question number ten billion eight hundred and fifteen you can call me Skippy would you rather be seen as nice or confident I think you are both you love yourself the most of anyone I've ever known yeah so I wish I could have an eighth of that that leads into my next question question 1517 are you ready for it yeah if you're not sassy what are you what's it like to be Michelle's mom being Michelle's mom it's almost rewarding thing I've ever done in my life as well as the most exhausting and worried something in my life I love her to death I I'm so I feel so blessed that she's in my life along you know with all of her challenges and all all the hardships that we've all endured she stills the strongest one in the family because she's the funniest she's extremely smart and by far and large she makes me happy when I'm down what is suctioning well why don't you answer and then I'll answer after okay tricks I complete click yeah so it's basically like blowing your nose for a person without a trach it clears the mucus out of the trick yes so that it's clear what is a trick barely Chris I guess that's silly but it helps me to please know pretty much just like blowing your nose right yeah but you don't blow your nose so now I'm training section on the licensure I get in the water first and then income you understand why sometimes your mom might be worried about you a lot of times insurance and Medicaid we have both challenges medication all of a sudden out of the clear blue angel has been on a medication for seven years all of a sudden they say we're not gonna prove that anymore and it'll be like a $500 a month matter yeah and and we we jumped through the hoops the peels and all that but it happened so much throughout that 22 years it's a that's what's exhausting but it's just it's a game that is played by insurance and Medicaid and yeah to keep their costs down and you have to play the game you got to play the game we got to keep you going Lady Jane when did you first learn to help your sister with the treat 12 I think I I us at one day I asked my mom I looked like I was like I can suction her and looks like what yeah why not I mean it's an easy procedure and it's one less thing for you guys to do so my mom taught me and then what 12 years later I'm uh newly graduated nurse what is your diagnosis what is that 26 of the 28 characteristics that make up hmm how would you describe it mom um it's a rare genetic disorder one of the primary characteristics of this syndrome is a cranial-facial disorder and along with that comes cataracts small airway recessed chin dental anomalies high palate small nose and then there's many other characteristics that can be associated and like Michelle said she has 26 to the 28 and you only need to have seven or eight to be diagnosed with it do you have any fears there any questions you don't I will not ask you any questions about robots I promise I won't even say the road I won't even say the word robots I'm not gonna do that I promise you I won't say the word robots have you two always been as close as you are now I think so I'm sure we had a few years like teenage years when we worked we were kind of like in different spaces in life but I think now that when our 20s were both kind of like Dusty's yeah especially on answer yeah we send you to their instant messages and stuff and pictures and selfies and gif ease I will never say the word robots robots will not come out of my mouth again that's my troll face if you could go anywhere in the world where would you go somebody sees you out in public like at the grocery store at the park wherever you are do you want them to come up and say hi do you find it intimidating when they're up high yeah what do you think when people stay up high and talk to you oh so it's because of your vision and when I'm this close you can see me but when I'm up high you can't see me yeah are you able to see far people need to look past her differences and into her soul in her heart because it's the biggest heart you'll ever meet what in this world makes you the happiest my god who is this gnarly beast I play with her I love her I can't like pick up poop so my parents do that but I look or opportunities I own hooker what's the best thing about being a dog mom taking care of my if she takes care of me when I'm sick yeah what are some things that make you sad Wow noises so she likes my face fiction are you to able to enjoy the present without worrying about the future 100% of course the future is always there but we can into something yet you said it perfectly it's I know but we have a see we're talk of the same well said

Channel: Special Books by Special Kids

Views: 14,721,688

Keywords: Hallerman-Streiff, Michelle, Blind, Chris Ulmer, SBSK, Special Books by Special Kids, Inclusion, Education

Id: Sdwes1vf2Z4

Length: 13min 15sec (795 seconds)

Published: Thu Sep 26 2019