Learning to Speak at Age 18 with a Sister Who Never Quits (Rubinstein-Taybi Syndrome)

if you had to introduce your sister to the world what would you say I would say that she’s my best friend she’s the greatest person and the happiest person you will ever meet right yeah you say hi welcome to SBS K join me as I travel around the world an interview individuals living with a condition to prove no matter how you communicate but what obstacles you face you’re always deserving of love and acceptance so without hesitation let’s meet today’s friend how does your sister communicate she communicates a lot by making noises pointing she’s really independent so she will grab things on her own if she wants to but she does communicate with an iPad I know you’re saying hello she will use an iPad at school and she uses to turn her therapy sessions and there’s an app on there that she uses to communicate it’s just pretty good at it what do you like to eat Oh Ali cookies too what do you like to drink what’s your favorite TV show is that a good one what’s your favorite song talk about herself it’s crazy it’s nice to meet you yeah say hi that’s a nice wave what’s your biggest hope for how others treat your sister um I really hope that people just treat her with respect that’s one big thing I always say that if people can’t accept April then they can’t accept me she’s a big part of my life and you know everyone just has to love her as much as I do yeah how would you describe your daughter to the world I would say that um she’s very very happy she’s nonverbal she’s very very easygoing it’s someone that you’d want to be friends with well mom’s upstairs if someone wants to be April’s friend how did they start they have to start by waving and saying hello and usually mmm I know it’s mr. Chris say hi see that’s an that’s that’s it I’m just a smile and you’re like set to go who’s your favorite person do you love mommy oh I know I’m the go-to person for music right right – – I know we’re not gonna say no but maybe a little bit okay you know that’s pepper are you two able to have conversations yes we like books and music so we engage in those two like I know and lots of we do lots of music because I’m usually the one who sings you know to her through the day right because it brings her so much joy and that’s how she communicates basically I know what she needs and she knows that I know that so she’ll go take the easy route and just point to things I should be making her use her communication device more than she’s using it but she she tries to get away with pointing to things and when we make her use it she associates it with school or therapy and you could see that she’s a little annoyed by it you sit right here I know you want to get up two minutes okay Oh April calls my name shall point to me so she’ll always point to me and say say my name oh the name she has for me well I’m not quite sure it’s it’s either honor not something but it’s not daddy but it’s it’s something else and she’ll say my name all the time and point to me so April has Ruben Steve kV syndrome which is a rare genetic syndrome it occurs in about one and 125,000 people and I always say that April happen to be that one is it any specific chromosome affected or yes it’s chromosome 16 that there’s a there’s a deletion or tear with chromosome 16 I wish I knew I wish I knew what she thought about like oh no what she dreams about that’s a huge one what is she about at night you know does she have nightmares does she not what like you know what’s going on in her dreams are we in them is she talking is it just you know she with friends is she with family she’s swimming is I just there’s just so much that I want to know and I know that one day I will we’re gonna work on it Rachael you know was three weren’t when I had April and I think she understood at a very early age you know that she that April was was different from the time that I was a little girl I always used to ask my parents why doesn’t she speak why you know it it never made sense as to why everybody else’s siblings could speak mine couldn’t and my quest with speech therapy is to figure that out I noticed you always take the time to respond to your sister why’s it so important for you to validate what she’s saying just so that she knows that I’m listening and that this is a conversation that’s something we learned from a speech perspective always do turn-taking always give them a chance to respond and always talk to them as if you’re having a conversation even if that’s really just sounds coming out that way you set the foundation for a possible conversation in the future you see your sister there she loves you a lot do you want your sister to come and help you do you love your sister you can come on out yes she’s pointed for you can you explain to everyone what this device is and how it benefits April sure so April speaks with an iPad and the app is called proloquo2go and this app is filled with lots of moving on your page the app is filled with a lot of icons that she’s familiarized with and that she’s able to navigate and speak and so there’s a page all about her there’s a there’s a page for school there’s a page for all of like her favorite foods your favorite music that’s why I definitely went into speech is to Monday how well you know up that full conversation with her and we’re getting there slowly but surely but we’re definitely making progress but it’s that turn taking that’s so important and she needs to know that we are having a conversation even though it’s it’s short and simple but you’re gonna fall asleep yeah you’re rockin do something I know you want to set on that couch I know I know you want your iPad I know I know in a few minutes okay in a few minutes you know was I’m the one who is the marsh um so I give her I give it to her for like all the things that she basically shouldn’t be having like an iPad all the time um or you know that third eye Oreo that she shouldn’t be having right you know it’s tough because you look at her through the eyes of a child but yet she is 18 so I do tend to have to remind myself of her age and that it’s it’s typical that she wants to be you know in her room alone with an iPad and to be left alone and so I find it it’s it’s hard at first because I’m a parent and yet I look at her isn’t as as a youngster but in reality she’s older and I have to kind of remind myself to say it’s okay I have to back away you know if this is what her interest is then go for it I like sending yourself to sleep what’s dimming stimming is just these these um you know the repetitive behaviors that calm her so for her it’s it’s rocking its rocking and usually she can’t fall asleep to it she’ll do it in the car a lot or she’ll just do it sitting right April you’d open your eyes for me sometimes she’ll do it during therapy right April yes Tom packing your head leave your head flew I know you wanted sit on that couch a few minutes okay mm-hmm you’re doing is that couch or couch that’s her cats if she’s not in her room she’s on the couch loves that couch it’s just super comfy have you grown accustomed to hearing Christmas music throughout the year yes and you know I only even hear it anymore if you just didn’t say that I wouldn’t have even it would have gone right by me it would have gone right off of my head you listen but yes we listen to a lot of Christmas music a lot of Barney in different languages I’m just excited for the future what what holds for us I’m excited where it takes us we’ll always be really close yeah I’m the first one to say to Rachel live your life go do enjoy I don’t want you to feel that you’re kind of a hundred percent responsible but in the back of my mind I do know that she will be the one who will look look out for her too to help with whatever April needs does it bring you comfort to see the bond your two daughters have oh it’s amazing that Sun I know that Rachel will will be there for her we know that that’s not even not it’s not even a question that’s you know that’s understood my parents and I had to sign legal documents to become her primary and supporting legal guardians which is a lot you know I was I was 19 at the time when we were deciding this and that was definitely a lot but there was not a doubt in my mind that I was going to do it I knew right away that I was going to take care of her and have her as my responsibility she’s my sister family is family I think the older we get the closer we become I know it’s Chris and I think that’s because I just understand her more and more each day hi hi that was a nice hi oh yeah yeah Oh daddy mm-hmm no we’ve really become close you know even now just like her holding my hand like that never really happens and her letting like her letting me hold her hand usually she pulls away so the fact that like she’s sitting here and letting me hold her hand I think that just really shows how strong I know how strong the bond has become I know it’s would you mind demonstrating how you communicate through this sure absolutely miss April miss April we’re gonna we’re gonna do this okay when is your birthday awesome and what is your favorite book oh okay look we have pepper right here Massey hmm see I know you love that song so what do you want to sing right now you start it if you’re happy and you know it if you’re happy and you know it clap your hands April has completely shaped Who I am as a person and I think that if she wasn’t who she is I would be a different person she has taught me so much about other people about myself about the special needs community she shaped my career for me I know losing your hand hmm you want to sing is it okay if we sing [Music] if you’re happy and you know it shout hurray if you’re happy and you know it shout hurray all right if you happy and you know it you really want to show it if you’re happy and you know it shout hurray thanks for watching if you appreciate what we’re doing and want to see SBS K grow make sure to LIKE comment and subscribe this will help us reach even more people and make the world a better place thank you what does it mean to you that April lets you hold her hand it means everything it really just means that I know that she loves me even less she can’t verbalize it it means that she does and that’s huge right

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