Latest / Aspergers & Autism Podcast [The Aspie World] AuDHD / Sibling Care For Autism

Transcript

Sibling Care For Autism · Aspergers & Autism Podcast [The Aspie World] AuDHD

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You have arrived. Welcome to the Aspy world.
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Here's where we talk about anything and everything ASD in
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an upbeat and informative way. And now here's your man on the
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spectrum, your autism ambassador, Daniel Morgan Jones.
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Well, oh, what's going on? Ask the world, fam.
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It is another podcast live. I say, I always say I always say
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it's live, but it's not live. It is live.
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It's recorded live, but you're not listening to it as it's
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live. So please, no questions.
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If you're like watching this on YouTube or Facebook, this isn't
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live. It's prerecorded, but I, I love
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doing these things because it's cool.
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It's it's raw, it's real, it's right now and that's what is
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going on. So I just got back from Canada
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guys, I'm super tired, jet lagged.
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Well, the event was a success. Thanks for asking.
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And if you're interested in the next one, please say tell me
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about it in the comments and then I will hook you up with
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ways you can get involved in the next one.
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And it's not just in Canada. The events going to be
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worldwide. So today I am interviewing
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somebody super interesting, being a conversion by e-mail,
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very interested. And the lady I'm speaking to is
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Hallie. And Hallie is an advocate for a
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brother and works voluntarily for the Citizens Options
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Unlimited, which and she's also the board president.
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So Hallie knows all about everything's you're going to
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talk about right now to do with advocacy, advocating for a
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brother and this organization or the group, the Citizens
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Unlimited board. Sorry, Citizens Unlimited, which
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is really interesting because I'm, I'm really interested to
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know more about the company. Sorry, Citizens Options
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Unlimited. OK, how are you?
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And never want me talking. Tell us about who you are and
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what you do and things like that.
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Sure. Thank you, Daniel, so much for
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having me on and for all that you do for the autism community.
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I just want to say that upfront. So yes, my name is Hallie Klein.
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I live in New York. I am the sibling of my Big
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Brother David. He was diagnosed earlier.
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I know that you were diagnosed later.
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He was diagnosed as a child in the I want to say it was 1980
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back when they were very very yes, a long time ago when there
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were it was a lot less common than but he was diagnosed in the
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80s and then parents passed pretty young.
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So dealed is my I'm my sister and I are Co guardians of David.
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We are also siblings. We are also best friends.
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We see each other every week. We do a lot of social things.
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And I am also honored to be the president of Citizens Options
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Unlimited, which is an agency on Long Island that provides
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supports and services to adults with, you know, different
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abilities. And David is fortunate enough to
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reside in a group called and engage in a lot of social
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activities with his peers and attend a day program and lead,
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you know, a really happy and fulfilling life.
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But we do see each other every weekend and we do.
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We're very close with our families and looks, you know,
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he's he's one of our best friends.
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Dude, that's that's so fire and you guys are.
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It's a Long Island, New York, right?
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Does not know Long Island that I know of.
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Cool. What's the pizza like in Long
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Island? I think it's better than the
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city, but I don't get a lot of Flack for saying that.
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I don't know, man. I had pizza in.
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I had pizza in in Manhattan and it wasn't that hot, you know
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what I mean? I was like right in the centre
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there, man, like, and it was OK, but I'm a pizza dude.
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I'm a pizza connoisseur, so I'm like, yo, pizza has to be dope.
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But I always hear I look, Long Island pizza's the best, right?
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So. It is you gotta.
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Be better than a Jersey pizza. Right, you will set up a pizza
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appointment and I will you to spa.
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I would love, I would love to come to New York and do like a
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talk in a workshop with you guys.
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I think that would be so dope. Like we should do that.
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That would be amazing. Yeah, OK, cool.
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I do those kind of things. So yes, I'm definitely
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interested in doing something. Yeah, sure.
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So David is your Big Brother, right?
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Yes. So what?
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Yeah. So, so I've got a Big Brother as
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well. He, my big brother's interesting
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because he taught me loads of things.
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And I think, and I, I talk about this in my book Autism for
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Adults, right. And we were just talking about
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it earlier. And in the book, I, I talk about
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how my brother really helped motivate or, or, or set fire to
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my kind of like intellectual kind of first for knowledge
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because my brother was a bit older than me and, and an
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intellect because he's a writer and things like that.
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And so he wanted to, we wanted to talk about these cool books
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and sciences and stuff. And I got so into it.
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So what is it that you know that your brethren has taught you
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about life? You know, and it could be
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anything, obviously. So really he's taught me how to
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be a better person for lack of a better way of saying it.
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But patience, compassion, perseverance, things didn't come
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easy to him growing up. Things that you know, I took for
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granted, walking, talking, swimming, riding bike, you know,
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school it, it didn't come easy to him, but he worked harder
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than anyone that I know. And he accomplished everything
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that he wanted to and is happy and is thriving and is, you
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know, really just an amazing person and just seeing him, you
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know, dedicate himself, it really, he taught me that you
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can accomplish anything that you set your mind to.
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And I and I saw that through him growing up my entire life.
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I love that. And you know, it's funny, I have
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this, this, you know, life for autistic individuals can be, can
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be difficult. I'm not saying it's difficult
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every single day when there are difficult elements every single
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day, but I also have a, a motto that I, I kind of run through
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and I have this, I have this whole thing that people know me
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for is like overcommitting, you know, 10X everything, you know,
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going kind of above and beyond all the time when I'm doing
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something because I've got like ADHD as well.
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And one of those things that I live by is that anything that is
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worth having should be hard work, right?
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And so kind of like, you know, if you wanted to get 6 pack abs
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and look like a bodybuilder, you'd have to put some crazy
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amount of hard work. So I believe that those things
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struggling and difficult as they may be, super rewarding at the
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end. And I think David can also
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resonate with that, right? Yes, absolutely.
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So here's a question for you though.
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How do you support David to be successful?
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Because obviously his success is by his own drive and motivation,
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but like what is it? What is your How do you feel
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your role in his successes? So I think it similar to my
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role, you know, with anyone that I love being supportive and not
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dismissing their dreams, not limiting him because of a
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diagnosis, you know, understanding that he can still
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accomplish anything that he sets his mind to and I think setting
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him up for success in safe spaces.
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So, you know, David does live in a group home.
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Citizens Options Unlimited is an amazing organization.
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There's social activities, there's there's places where he
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can thrive and be successful, you know, and whatever he wants
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to do because they're supportive as well.
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So I think connecting with, you know, appropriate safe spots for
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him is very important. But I think just being a sister
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and supporting him, you know, with love and kindness and not
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dismissing him and not ever a woman dating him because he's
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capable of everything that I have and more.
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Yeah, it's like unconditional support, right?
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Like it's, it's, it's the stuff that you don't even need to say.
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You're just there, right? Because that's what you do like
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for the people you love most. And I always say this, right?
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Love is displayed through actions, nothing else.
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So people can say that they do all this stuff out of love and
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they love this, love that. But unless you take action
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towards love, then you don't urge yourself towards it.
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You know what I mean? And I think it's so interesting
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and, and the fact that you've been doing this interview and
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we're talking about David shows me that you love him dearly.
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So which is really, really good. So what does the balance look
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like between, Hey, I'm your support person as well as you
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know, you have to lead an independent life because all
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autistic individuals strive to be as independent as possible.
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That's what we're all trying to do.
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And I know for me, you know, it took me, I was 2028 before I was
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able to live outside of my parents house.
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And you know, to me, I feel like I have somewhat low support
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needs, but also I have very high needs in other places.
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Like you get to function and stuff like that.
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So like, you know, managing finances and doing groceries
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and, and, and washing clothes, those things are really
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difficult for me, you know. So what does it, what does the
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balance look like for you, you know, supporting David but not
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doing too much so he wouldn't learn things.
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You know what? What's that look like?
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So I think, and you touched on some of the things that he
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struggles with as well, money laundering, things like that.
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I think, you know, not limiting him is just leading with that,
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not limiting him, but being his sister, being there for him,
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helping him, you know, realize his dreams, not dismissing them.
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You know, we grew up together in the same house.
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When my sister and I turned 18, we went away to college that
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David wanted to go away, too. And he would ask questions like
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where, you know, when am I going to go?
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When am I going to move out? When am I going to be, you know,
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with my friends? And I think realizing that that
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might look different for David, but that he can still work
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towards that goal and connecting with an agency like Citizens
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Options Unlimited, where he can now move out of the house like
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his sister's dead and live with his peers like his sister's dead
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and, you know, have his own, you know, house his sisters do.
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Exactly. So it might look a little
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different, but it's really the same.
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And I think, you know, being his sister and being a support in
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everyday life, like you said, just natural support, leading
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with love and connecting him to organizations that support him
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as well so that he can, you know, realize whatever potential
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and dreams he has. Here's a sidebar question.
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How, how you know, what would you think the potential of
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success without having the support from an organization,
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you know, like Citizens Options Unlimited?
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Like if you didn't have that, what do you think his his
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potential would look like? Do you think it would limit him
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or, you know, because it's really interesting.
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I don't know, like what? How much does he use that
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service, you know? So I think it would look a lot
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different. So he, a lot of his
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independence, a lot of his socialization, his daily, you
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know, everyday he goes to a program and you know, that's his
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work. So I wake up, I go to work, he
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wakes up, he goes to work and we talk about it.
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What did you do at work today? And his program is different
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than me sitting in an office, but we both work.
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And I think if he didn't have an agency like Citizens Options
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Unlimited to support him where, you know, he'd have a workplace
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to go to everyday. He has a home where he can live
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independently. He has social activities that he
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can engage in with his friends. If he didn't have all of that,
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his life would be a lot different and he wouldn't be as
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happy, you know, and, and that's something that needs to be
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expanded on. And there needs to be more
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funding. There needs to be more programs
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available for everybody because they are so crucial.
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And again, I'm just talking about David.
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I know the spectrum's very broad, but my experience with
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David and some of his peers, it is so crucial to their, you
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know, fulfilling their, their dreams and limit leading happy
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way. Yeah, definitely.
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And you know, in terms of like support, you know, we're talking
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about how the the organization supports David.
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But what's really interesting, or I think is really interesting
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is what is, what is the support? What does it look like for the
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support, for the support, you know, like so caregivers and
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people caring for autism, you know, do you feel there's any,
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there's, there's a lack of support?
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Do you feel like there's enough support?
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Because like there, there must be challenges that a caregiver
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will face when supporting like David, for instance, right.
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So useful. David, what challenges and stuff
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do you do you come across? So Citizens Options Unlimited,
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and again, I'm just speaking from my personal experience, We
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have support groups, we have sibling groups, we connect to
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other family members. There are respite programs for
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family members available, but I will never think that there's
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enough, just support in general and funding in general because
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they're, you know, like I said, David was diagnosed, I think it
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was 1980, but it was definitely the early 80s and things were a
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lot different than now. There's such, you know, a larger
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lean for, you know, increased supports and increased funding
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that, you know, that's, that's part of my mission is, you know,
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I will not give up until there's more and there's enough for
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everybody that needs it. But Citizens Options Unlimited
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does, you know, ensure that the caretaker, you got to take care
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of the caretaker, right? So they do ensure that there are
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support groups and you know, respite's available for the
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people that care for the people in the program.
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Yeah, I mean, like, look, it it takes a village, right.
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And I think that, you know, that saying is really like there,
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there are so many moving paths to, to anybody's, you know,
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because we're all complex beings, right?
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And autism is even even more complex.
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And so it, it then branches out to different things because the
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stress can't just be dissipated onto one person.
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It can be distributed among a few people.
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And then they, you know, probably share this problem
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hard, right, which is exactly the muscle we need to go for.
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And the more you help each other, there's more diluted the
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problem. Right, exactly.
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And I think just talking to people that understand it's, you
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know, I, I think even us having this conversation and talking to
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other people that have loved ones that are on the spectrum, I
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think just, you know, finding that common ground and just
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being able to rely on each other to understand the other one's
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perspective first hand is so important.
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So connecting to organizations that offer that type of support
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and that type of interaction with others is so important for
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caregivers. 100% So here's a question.
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What do you think that like, how do you think society can better
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help support families like your family?
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Right? What what can we do as a as a,
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as a society or a group of people?
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How can we support their families like yours?
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Always better funding. There's you know, it's
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underfunded. There's there's so many people
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that need supports the people that care for my brother, direct
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support professionals in his group loan, you know, as far as
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I'm concerned, you cannot pay them enough money.
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That is one of the hardest jobs in the world.
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They deserve to make, you know, all the money in the world and
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government doesn't you know, fund them.
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You know enough, and that's so important.
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Increased inclusion in society is very important.
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I, you know, have seen changes for the better since 1980.
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I will say that like, there's still a huge need.
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You know, there's more and more people on the spectrum, more and
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more and more people with sensory issues, with ADHD, with,
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you know, different issues that there needs to be more
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inclusion. It needs to be everywhere and
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not just so places. Yeah, definitely.
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You know, I think there's a big, I mean, one of the reasons I did
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this event in Canada that this week just gone was because me
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and my team did a big dive of data across all of my audience
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and asked like, you know, what is the biggest thing you
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struggle with and where are you? And two of the biggest things is
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1 autistic people felt super lonely.
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And the other one was that they were disconnected from services.
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They didn't know what service existed in that area, what
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support existed in that area. And so that was Canada, United
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States, Australia and some parts of the UK, which I found really
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interesting because those are highly densely populated areas
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and you'd think that there'd be more services that would be, you
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know, showing themselves. So this kind of leads on to the
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question, are there any of the resources slash or support
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services that you found helpful as well as the organization that
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you kind of volunteered for? So there is, I mean, through the
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organization, there's no worse resources, but I think
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connecting with other families and parents can lead you to a
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ton of resources that you may not know about.
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You know, if there's a soccer team that offers an inclusive,
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you know, team, you know, sport, you find things out like that by
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connecting with other parents. That's a huge other guardians,
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siblings, family members. That's a huge part of it.
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Definitely. I think, you know, somebody
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asked me the other day and they were saying like my kids, you
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know, like tweens, teens, like they're between kind of like
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becoming these independent, like young people and the before
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getting to adulthood. And they say where's a safe
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space for them to meet other like finded people, right?
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And I always said like church groups, like it's a great one,
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right? Because you've got to like get
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somewhere that's safe that you can find other people who are
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not going to judge and are going to be able to kind of like, you
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know, accept, accept you for who you are.
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So outside of autism support groups, I think if you're
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isolated in an area, always try you out like church youth group,
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right? Because there's always going to
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be something fun for them to do and meet other, you know, like
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other kids. So it's really interesting what
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we should talk about that. So what tips would you share
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with other sibling advocates? So for somebody just like you
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who is like advocating for their brother or sister or whatever,
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what, what kind of tips would you share with them?
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So I would say get involved definitely, you know, learn what
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resources are available and get involved.
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Don't take no for an answer. If David wants to do something,
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I will find a way. If my initial, you know,
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response is no, we will still find a way.
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And don't I, you know, I think being in a safe space is so
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important, but I also think not limiting his, you know, ability
18:22
to be part of society as well. So, for instance, David loves to
18:26
go to Mets games. He loves to go to rock concerts.
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He loves things like that. And I would never, I recognize
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that he may need some additional supports to attend those events
18:38
successfully, but I would never discourage him from doing that.
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And that's, you know, something that we love to do together is
18:45
go to a men's game in the summer or go to a concert when we were
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younger. He would love to go to a bar or
18:52
a club, things like that. And I the old days, oh, my knees
18:57
are too sore for that now. I can't do that these days.
18:59
Right, when we were younger. Yeah.
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Yeah. But And I understand again then,
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you know, it might look a little different, you know, for David.
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And we might need to, you know, have a contingency plan or an
19:11
exit plan, or we might need to sit in a specific row at the
19:14
concert so that he doesn't feel overwhelmed.
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And. But I think not, you know, not
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shying away from being intergraded in society.
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You know, it's not always easy and there are still some
19:28
judgmental people out there, but I think that's important as
19:32
well. And setting, you know, your
19:33
sibling up for success in every way possible.
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And of course, connecting with local agencies like in my case
19:40
Citizens Options Unlimited that provides resources for people
19:45
you know from loved ones that are on the spectrum.
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Amazing, amazing stuff. So before you wrap it up and ask
19:51
you how people can find you, I got one question is Staten
19:55
Island pizza or Long Island pizza?
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Which is best? All right, so my sister lived on
20:02
Staten Island for a while so she would get very upset with me for
20:05
saying this, but I still have to go Long Island pizza all day
20:08
every day. So if you come to Long Island,
20:13
we will set up a pizza party and I can pick some of the best
20:18
pizza locally and you can we could have a taste test and
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you'll decide. That's exactly the kind of high
20:24
end. Thank you so much for that.
20:27
So Holly, look, it's been a pleasure talking to you today.
20:29
How can people find out more about what you guys do with, you
20:34
know, citizens options Unlimited?
20:35
Like how can people find you? So I would love to give you my
20:38
contact information, our website, and you know, people
20:42
can reach out to me anytime. I know that sometimes getting
20:46
started with, you know, connecting with an agency can be
20:49
overwhelming and it's not always easy to find one that may be
20:53
appropriate for your loved one. But please, you know, I'll share
20:56
my contact information. Anyone is available to reach
20:59
out. I'll give you the website to
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Citizens Options Unlimited and you know, you could reach out
21:04
from there as well and we'd love to, you know, further discuss or
21:08
you know, any time that you would like to do something
21:11
together, have us on again, we would love to be more of it.
21:15
Perfect. OK, so I will leave the links
21:17
for the citizenshypheninc.org website down below and in the
21:22
show notes. And if you want to get in touch
21:24
with Hallie, obviously I'll have the links there so you can get
21:26
in touch with Hallie on whatever public platform she allows you
21:29
to to contact on. And then also, yeah, that's how
21:32
you have you back for something we'd talk more about pizza and
21:34
autism. That'd be kind of cool.
21:36
That would be great. So you let me know when you're
21:38
ready and we'll do that. OK.
21:40
Thank you, Holly. Take care.
21:41
Thank you so much. Hey guys, thank you so much for
21:43
checking out this podcast. Make sure you are subscribed
21:46
because there are people listening right now who not
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subscribe to this podcast. I can see you.
21:50
Make sure you subscribe, OK guys.
21:51
See you in the next one, Peace.