Adult Autism & Sibling Advocacy | Emotional Resilience That Sticks with Annie Treml

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[00:01:04] Welcome to another episode of CrazyFitnessGuy's Healthy Living Podcast. I got my friend Annie who's going to talk about... I'm just going to let her introduce herself because why not? Welcome aboard, Annie. Thank you. Thank you, Jimmy. I'm a little bit about myself. So my name is Annie Trimmel.

[00:01:26] I'm a family support strategist. I help families, parents and siblings of children with disabilities to feel connection amid the chaos to make sure everyone's needs get met without adding more to their plate. I tend to focus mostly on behaviors within the family

[00:01:44] to help the family calm that chaos and create that connection. So how come you wanted to go into this career? Well, I started... I've made a long meandering journey to get to the point where I am today.

[00:02:00] It started with me being the eldest sibling of a person with a disability. I'm the oldest of five. Then comes another sister and a sister after that. My sister, Dubbs, who has autism and intellectual disability. And then I have two brothers after that.

[00:02:15] So growing up within a family with disability, obviously kind of led me towards what ended up being my first career, which was as a school psychologist. So I worked with students in public schools and then went on to own a private practice.

[00:02:29] And now I support families through coaching. I can definitely relate a little. I mean, I can relate because I'm on the autism spectrum as you know. And I can also relate because I had multiple jobs before what I'm... I mean, not full-time but they were part-time.

[00:02:51] And I can tell you, I did not like any of them until this one. Like what you're doing now though? Yeah. Yeah. That's all that matters, right? Yeah. Like the other ones might have said, but you're getting paid consistently. Yeah. Money doesn't make me happy. Go ahead. Yeah.

[00:03:12] It can sure make life easier, but it doesn't make me happy. Absolutely. Well, and that's what it's all about, right? I think we all go through a lot of different... I mean, I think it's not uncommon. I don't want to say everyone because that would be generalizing,

[00:03:26] but I think it is really more common for people to try a number of things before they find what's important to them, what they would do for no money, right? Yeah. And I am kind of curious about... I don't think I could ask my brother this.

[00:03:47] And if I did, I probably might not like his answer. I don't know. I don't know his opinion. He's really busy with his job as an accountant for me to even ask. But what is it like being an older brother?

[00:04:07] I mean, I'll assist you to someone who's something on autistic spectrum. I guess I'm the youngest of my family and my brother's the oldest. There's only two of us growing up. And I kind of wonder if I made his life miserable as hell.

[00:04:31] Well, so there's two parts to this. One is that I understand why you say you wouldn't ask your brother because yes, siblings, it doesn't matter what kind of siblings, right? Disability, notizability, your job is to drive each other crazy. And siblings are so good at that.

[00:04:47] I know that was true in my family. I feel like they drove me crazy, but I have a sinking feeling they would say the same thing about me. That being said, I think being the older sister to a person with disability.

[00:05:00] Man, there was a lot of mixed feelings there. I felt so protective of my sister. And I felt so such warmth toward my sister because of all the things that she worked through, struggled through all the things she achieved, you know, with everything that she was dealing with.

[00:05:19] I also had those days where like, for instance, my sister absolutely perseverated on MTV and loved it. So if you even tried to change the channel when I was a kid from MTV to anything else, it was a big deal.

[00:05:33] You know, those kinds of things made me cranky like they would any sibling like, man, give me control of the TV. Can't you ever just take a break? On the other hand, there was some deeper resentments and jealousies too. You know, she got a lot of attention.

[00:05:46] She had a lot of needs and that makes sense, right? We had to make sure she got to the doctor and I would never as a sibling have asked for anything different. I wanted her to be well, but I think that balance of power,

[00:05:57] that was really tough as a sibling. So it was weird, you know, day to day, you on one hand, you absolutely love, love, love, love your sibling and you feel close to them and you feel like they're protector, they're interpreter, they're caregiver.

[00:06:14] And on the other hand, sometimes that stuff got old and you got mad at them and you just wanted to be their sibling and yell and fight and scream. Sometimes that wasn't okay. So, you know, there was, there's a huge balance there.

[00:06:26] I think it's more complicated than a typical sibling relationship. And did you ever find that, did you ever feel like, like let's say you had friends over at the house and did you ever felt embarrassed that you're related to this person

[00:06:45] and you didn't want them hanging out with your friends and whatnot? You know, I never had that experience. I really didn't. I was never embarrassed. I was like I said, I was more, I was proud. I was a protector.

[00:06:58] It was more that occasionally people would make ignorant comments or use ignorant wording and phrases. And in that case, you would see me kind of rise up. And I was a pretty, I was a pretty mild child. I was very introverted. I didn't like to speak up.

[00:07:13] But if you said something about my sister, you would see my chest rise up, my shoulders come back. And I would tell you exactly what I thought and why you were misinformed. So I was never embarrassed. It never bothered me.

[00:07:26] I do remember a time when some young girls, I was probably 10 and my sister's probably eight. Some young girls from down the street, a couple came down to ask actually my sister to play, which never happened because she was, she was limited verbally and socially.

[00:07:43] So she didn't have a lot of friends who came over, but these girls came over to play. And I remember seeing my mom talking to them at the front door and I was very excited for my sister because this just didn't happen.

[00:07:53] And I remember my mom sent the girls away and I asked her why that happened. And her response was her response. I can't tell you exactly what she said because I don't remember, but I'll tell you the gist of what she said.

[00:08:05] Her response was we have to be really careful about who spends their time with Abby as my sister. Sometimes their intentions are not as positive as we think. And sometimes being young, they don't necessarily know how to interact with her best. And so she turned them away.

[00:08:24] And I remember being floored by this because as a kid, I was very much feeling like she would be very excited like this, like any kid would when someone came to play. But that really opened my eyes to how I could play.

[00:08:37] It opened my eyes to how complicated the situation was and to how difficult it must be to be the parent and caregiver of a child. I know my mom wanted her to have those relationships, but her fear that something would go wrong

[00:08:51] was stronger than that want for her. And so it didn't happen. So it's crazy. So I mean, like my relationships with friends didn't change, but I always found it's so complicated for her to have those relationships. I can definitely relate to that. I was in school.

[00:09:06] I didn't know how to make friends, but yet somehow I made friends anyway. Like to be honest, I don't remember how I knew my friendship started with people. I mean, I remember my next door neighbor. We, how we made friendships. He literally,

[00:09:27] we were moving in to our house. They were there way before us. And we were moving from New Jersey to Pennsylvania and our Pennsylvania house, we were just moving in, kind of just taking a look around the house. He's going upstairs.

[00:09:45] He just walks into the front door and say, Hey, my name is So-and-so. And I was like, this is strange. I mean, we've been friends since, yeah, we've been friends since I moved into Pennsylvania. And, and then my one friend, my other friend,

[00:10:07] I've been friends with him since like third grade. And I was like, I don't even know how it all began. I think that's awesome. And you know, I, I don't know about you, but it really makes it easier for me to make friends

[00:10:20] when someone else does the job of the dirty job of introducing themselves first. Yeah, probably that's how I, how I went about that too. That's awesome though. Yeah. I have, I have long friendships that started very much the same way. And have you,

[00:10:39] so did you ever treat your sister differently because she's most autistic and Yeah. I mean, I think there's no doubt that in many ways my relationship with her was different than my relationship with my other typically developing siblings. There's no doubt about it.

[00:11:01] There are certainly some of the same things. I mean, we fight like other siblings do. We, even as adults, we still get on each other's nerves sometimes, you know, just like any siblings would your personalities. You know, we have very specific personalities, just like any two people.

[00:11:16] And sometimes they don't always smash, but, you know, I do feel like we all took more care with my sister, Dubbs just because, you know, physically she required more care. You know, she couldn't do a lot of the same things that we could do all the time.

[00:11:31] Sometimes there was medical things going on or whatnot. And I think just mentally, we gave her a little more breathing room because we knew that her capacity to cope with certain things that bothered her it was smaller.

[00:11:44] So we had to give her more space to be okay, to be happy. We were fine with that because we grew up with that. That's how, you know, that's something that from the very beginning we knew she needed as an individual person.

[00:11:55] So it never struck us at different, as different until I think I know for me when you get into that teen years and you start to see other people's families. That's the first time, you know, I'd visit other friends houses and go out of my own house.

[00:12:07] Then I would see the difference between a family with disabilities within the house and a family without. That's the first time I kind of started making those connections. Oh, there is some differences before that. It never occurred to me that my house was any different than anybody else's.

[00:12:21] I don't know. I don't know how my brother found out or maybe my parents told him, but he always just treated me like any other brother would just drive my life. Just drive me to crazy and crazy. I know it wasn't just all fighting back and forth,

[00:12:42] but it is like we just always got on each other's nerves no matter what we did. I would play video games. I want to play video games. He's on their computer for homework and he's like, I want to play video games. I'm doing homework. Screw your homework.

[00:13:00] It sounds like two brother siblings. Yeah. But it's so funny is I mean that sibling relationship, right? That's we never realize it, but that is the longest relationship most of us will have in our lives is with a sibling. They know us from birth to death.

[00:13:16] We get a shorter time with our parents. We get a shorter time with our friends, but our siblings are with us the whole time. So I mean it's a good thing that we can accept each other. The good and the bad hopefully, right? Because it's a long haul.

[00:13:28] It's a long relationship. Yeah, I could be like my, I can't even say this story, but it's like my dad and one of his siblings that they don't no longer, they don't even talk to each other. Yeah. And which is sad.

[00:13:44] I mean, I don't know why because that's not my story to tell. Right. That's a whole nother bullet of that's extra crazy. But you know what? I think it's not uncommon in families with disabilities. I think if we have siblings who continue to talk to each other

[00:13:59] into adulthood and have a good relationship, I think oftentimes it's actually rarer. A lot of the families I work with. When you get into adulthood, those siblings, they become further apart. They separate more because there was resentment and jealousy in childhood that was never really dealt with. Right?

[00:14:16] Yeah. I think my, for my parents, they always, they gave both of me and my brother equal attention. They always treat us equally. They didn't like, oh, Jimmy gets to do this extra because yeah, so-and-so there. They treat us like pretty much. Yeah.

[00:14:39] Literally the same that they said is like, they're for whatever reason, my parents, like they always wanted us to get good grades obviously in school. And they did not accept anything lower than a B. If you guys see the grounded and what's really funny now that I'm

[00:15:00] in college, it is like, oh, you just need a C to pass. And I was like, what changed? You can use this is not right. Well, it sounds like your parents did a wonderful job. They're far from perfect, but don't tell them that.

[00:15:20] I'm telling anybody to probably listen to this and party. I'm trying to say me as well. You still grounded. Oh, always our parents. There always are pierces matter how old we get, huh? Yeah, that's for sure. So, when you help out these families,

[00:15:41] do you ever, is it, is it a struggle with helping them out or? Well, I mean, it's my joy. It's my joy to help families. It's what I love to do, which is why I do it. But is it hard sometimes? Yeah.

[00:15:57] I mean, it's hard to see family struggle. And it's hard when those struggles are not something that can change in a lot of typically developing families. It's often comes down to choices and you can change something drastically with a simple choice, but in a family with

[00:16:13] disabilities within the family, a lot of things can't change. Right? They are what they are. And there's things we have to do and things we have to deal with. And decisions we have to make that we really have fewer choices about.

[00:16:25] So I think that's sometimes hard for families to come to realization and to grips with. And it's hard for me because I want to help them, but some things are just the way they are. And if you, so could you share a little bit of like,

[00:16:44] not to get into super specific details, but can you share some of those challenges? Well, I think a lot of the challenges I see with families is that there's not, there's three things that generally aren't in place. The families are really struggling.

[00:17:00] That is there, there's not boundaries in place. Oftentimes people in the family are giving, giving, giving to each other and not giving to themselves. So they can't maintain a balance of wellness for themselves. There's also self advocacy, right? When we are in families that need our support,

[00:17:18] oftentimes we're not sure how to balance advocating for ourself and our need and advocating for someone else's needs. So we're not sure how to balance those two to keep us well. And then the last thing is a circle of support and that's

[00:17:32] probably the most important thing in any family, frankly, but particularly in families with disabilities where we need more support and where we're apt to run into medical issues or other things that kind of throw everything, throw everything into chaos.

[00:17:47] We need a plan so that when those things are thrown into chaos, we already know how to get the help we need. So that feels more routine. It doesn't feel so bothersome, so frightening. And it doesn't throw us into a tailspin, into chaos.

[00:18:04] So I'd say boundaries, self advocacy and creating that circle of support are what most families need to get kind of back on track. Well, to be honest with you, when we had every schedule, honestly, I didn't know that my people,

[00:18:23] I was coming to my, clean my house a few weeks ago were coming and it kind of threw me through a loop because they didn't come at, since we are literally set up every other week, they come at different times.

[00:18:41] And so then one week they might come at one o'clock, they might come at two o'clock, today they come at three o'clock. And I still don't like when stuff is not consistent. That's why basically the days when I have my podcast interviews, I always set them up.

[00:18:58] It's an hour either at two o'clock and so on. And just as I same time, same place. And I'm a little freak. That routine helps you, right? Yeah. I don't blame you. That would set me off too. So basically when we had the schedule,

[00:19:21] I was just kind of like my whole afternoon was just thrown for a loop and I was like, okay, where am I going to go? But today I knew that they were coming. But I was like, I'm going to use the third floor today

[00:19:34] because it's quiet, there's a door. But that's the thing. You are just reinforcing what I just said. Essentially, right? Because you had a plan. You had an alternative plan for us. Something happened. You had supports in case something kind of threw your routine off, something in place.

[00:19:53] You have a third floor available to you even if you don't like to use that. Right? It's there. So you're doing exactly what you need to support yourself. That's a nice third floor. I like my bedroom. And my dad said I could use his office.

[00:20:10] But where I wanted to be, I wanted to be on the highest floor as possible. So when they're using a vacuum, it's not going over the floor above me. It's like, this is lovely for a podcast. Awesome. Good idea. Here's some background soothing background noise.

[00:20:31] Well, that's a good way to think about it. I like that. I might put that in the next episode. Soothing cleaning noise. I'm going to go back to the first episode. Just one episode cleaning noise. You never know. There's probably an audience for that.

[00:20:47] Yeah, probably not my audience. If I like, what is wrong with this person? Is it broke? Hello. I just hear any talking. I'm pretty sure they tune in for you even if it was vacuum noise. No, I probably went to an infirm myself.

[00:21:07] But so do you have your own website and everything for you? I do. Thanks for asking. You can find me at any tremble.com or you can find me at any tremble connects on Facebook and DM me directly if you're interested in talking.

[00:21:23] I'd be reply to all those messages and I would, I would love to talk to special needs families. And do you do stuff virtually or do you just do locally or whatnot? I do work virtually. I work online with families and there's multiple ways I work

[00:21:41] with families, but I always start online and by speaking with the parent of the special needs family. And just out of curiosity, how many people do you help out if you unless you don't want to say at any given time?

[00:21:58] Yeah, I can work with up to about three to four families at any given time depending on how in depth the work that we're going into and what we're doing. And so how many years have you been doing this for? Well, working with special needs families,

[00:22:17] it's been a long time. I don't want to age myself, but you know, I was a, I worked as a school psychologist for 16 years working with disability families, both publicly and privately. And I've been doing coaching for a little under a year now, specifically with families.

[00:22:33] So we're talking close to 17 years. Well, again, I can't do the math in my head. So I wouldn't ask you to, you don't look old at all. Well, thank you. That's sweet of you to say. I'm old.

[00:22:47] I feel old because I have a lower back problem and I blame my old insurance company. I'm not going to say the names. I would love to. That's probably a good idea. You know, may I just start using a cane just annoying them off? I don't know.

[00:23:07] We got to do it. We got to do. You nasty. Well, it's because I see a lot of specialty doctors and yet, and as I am from my physical therapy for my knee, I was thinking because I did something to my knee.

[00:23:26] I can't even tell you what I did to it. I didn't like banging anything in it, but what my physical therapist told me and at the, how is that to find a new one now? Because of my new insurance is that my knee,

[00:23:40] my hip bone is at more of, at an more than, is slightly more at a more than a 90 degree angle, like a regular hip or hip joint or whatever. I can, I'm not a scientist and I'm not a doctor. And so they, and he said,

[00:24:01] and like basically because I have two inward printing knees, I was like, like your leg really wants to correct it and it tries its best, but it knows it can't do it. So you're kind of just, so every time when I do a lunge,

[00:24:18] I'm literally off balance and putting too much pressure on it. And this sounds like, yeah, it sounds like everything's maybe out of line. Yeah. Which would be painful. Yeah. And I think maybe when I was doing a lunge in karate, I kind of just like topple over.

[00:24:35] And so then I kind of, I don't know, I wouldn't say sprained it, but maybe twisted something in there. I can exactly tell you. Yeah. Happen at like, sometimes when this whole pen, before the pandemic started, and then I, and I would say really painful.

[00:24:55] It just kind of, I just let it go because I would just like, oh, maybe he's got bed by itself, but then I knew the end of the semester. I was kind of just getting tired of last semester. I'll just get tired of it all.

[00:25:08] And I say, yeah, I'm going to start looking into this. Yeah. I don't know much about some now. No, you, you, you don't surprise me at all. I know way too many people including myself who just say, Oh, it'll get better. It'll get better until we're in pain.

[00:25:24] And then we're like, uh-oh, what did I do to myself? And I kid you not, I was literally two weeks. I felt like I only need two more weeks with the physical therapist and the insurance is like, we're cutting you off. And I'm like,

[00:25:40] I'm like, I'm going to get the X amount of dollars and you, I stick your nose out of my own business. Please. I didn't say that to them, but I wanted to insurance companies are insurance companies are a pain in our, in our side for sure.

[00:25:57] Or the other one. Or the other one can't say that, but it's implied. That's right. And now to, I'm not saying I did not say the curse word. So, but anyway, before we wrap up. So, and is it, would you, do you think,

[00:26:27] what do you think is the best way for people to, to help a person on the autism spectrum and their own family? I think, you know, obviously every family is different. And I like to customize like my recommendations for families, but in general, I say, you know,

[00:26:46] if you're living with someone with autism, particularly a child with autism, which is what I, I kind of work with. I say, make sure you're not isolated. That's my biggest tip. We have a tent to isolate ourselves when things get stressful. And so,

[00:27:02] often many people with autism is, you know, isolate themselves. And then we find that families tend to follow suit because you're under so much stress. You're not sure where to turn to for support and you don't want, you don't want people to worry about you.

[00:27:16] So you tell everybody I'm fine, things are fine. Everything's good. But the last thing you should do is be isolating yourself. So if you're, if you're needing support, if things are not going well, and if you're not getting the answers that you need from

[00:27:28] other doctors or other people, continue to seek support. Ask your friends for help. Be honest in what you need. Ask kindly, ask often and ask clearly. And you'd be amazed how often people are willing to help. And I kind of lied. I have one more question for you.

[00:27:47] I break my own rules on the show, whatever. When, when, I don't just curiosity. Is it, um, when you mean isolation, do you mean being in a separate room? Or do you mean just like, Oh, today I feel perfectly fine.

[00:28:08] But in the back of your mind is like, screw the world. I'm glad you asked for clarification. I'm thinking more of the second. Um, so more of what you said regarding sometimes you just feel like the weight of the world's on your shoulders,

[00:28:22] whether you have a disability or not. And because so few people understand disabilities, we tend not to share what's happening in our families. Because it makes people uncomfortable. They don't know what to do. They don't know how to help us.

[00:28:35] So we tend to isolate ourselves a little and pretend it's all fine. But that kind of stress builds up, you know, it doesn't go away. It just adds and adds and adds on top of each other. So, and we end up isolating ourselves and letting everyone think

[00:28:46] we're okay. And I guess what I'm saying is, is don't do that. Let people know when you're struggling, let people know when people in your family are struggling and let them know, you know, clearly kindly and quickly what they need to do

[00:28:58] and can do to help you because they may not know how to help you. So they don't ask, but if you tell them what you need, there are so many people I think we know that right?

[00:29:06] Really good people who want to help us if we just tell them what we need. And, uh, yeah. Uh, we got one more question. Uh, go ahead. I just said that again. Woo-hoo. Uh, is it, uh, uh, uh, just that I was just thinking. Um, so for me,

[00:29:29] uh, I know, I know there's some days where I kind of just, uh, I get so kind of, um, I'd say just having like so many different thoughts going on in my head and I just, I kind of felt,

[00:29:45] I kind of do feel like sometimes I carry the world on my shoulders and I'm not saying like, Oh, I'm just holding up the world and he ears me. But I feel like sometimes I had to, how does someone like get that weight off of their shoulders

[00:30:02] because I know for me running a whole website by myself, it's kind of daunting some days where I say, gee, I'm one person and it's like, can I, it was like, be nice if I had actually hands,

[00:30:15] but I know that's not going to happen anytime soon at the moment. But no, I totally get what you're saying. I think, you know, and I wouldn't be surprised if you do what a lot of people do, which is hide that how hard that is for you sometimes.

[00:30:28] Do you do that? I wouldn't say I hide it. I'm more of like, I get quiet and my, my mom basically knows when I'm like always talkative, I'm in a relatively good mood. But when I kind of shut,

[00:30:44] shut my thoughts up in a box in my head or I'm like really just ticked off or grumbling to myself. I tend to, she figured out and it's like, you sound in a bad mood and say, gee, what was the first key? Close. She knows when you're overwhelmed.

[00:31:04] And my guest being that she's your mom and you've talked about her a bit in this podcast is that she does what she knows how to do to help you, right? Unfortunately, unfortunately most people don't know us that well. So my guest might,

[00:31:18] my thoughts to you kind of goes back to what I just said before, which is when you notice those things about you, when you're feeling the weight of the world on your shoulders, when you need help, whether that's simply people helping draw

[00:31:30] that information out of you or you need help doing actual things, maybe in your business or with your website. Again, I encourage you to stop to breathe and to remember that just because you're struggling doesn't mean everyone knows it.

[00:31:45] You need to tell people exactly what they can do to help you quickly, kind, kindly and often. And if you do that, you start to create a pattern with people. They'll begin to see those cues in you and they'll know when to ask you for help as well.

[00:31:59] And you'd be amazed how often people are happy to do this very small things to make, take that burden off of you. And many times, you know, it's in areas where they happen to be really good at something. Like if you know someone who's great with your website,

[00:32:12] even if you're not, for instance, that person could take two minutes to that happy to help you with something that might have really been weighing on you and would have taken you a lot longer. Yeah, that's kind of like one of my friends who's a developer

[00:32:26] and it's amazing the stuff that he does. Like what would take me probably a few days to figure out is like, oh, let me get that done for you. And he literally, it's like five minutes from him and it's like, you make me look bad.

[00:32:42] I took a beginning credit class and he's like, this is not beginning. I was like, definitely it's not beginner, but still it's like, you make me look bad. Well, and I can relate to the website stuff because that's not my area either.

[00:32:54] And I can't say that I'm not going to be a developer because I'm not going to be a developer. And again, I'm not just going to look at the website stuff because that's not my area either.

[00:33:05] And I can tell you myself that when I have someone else do that stuff, that way lifts off my shoulders. I automatically feel a lot better because it's just not a weight that was meant to be on my shoulders.

[00:33:16] And sometimes we forget that we can give our burdens to others and it's not burdens to them. I think the one thing that kind of burdens me at times it just, scheduling or scheduling stuff. When stuff doesn't work the way that's set up to work,

[00:33:33] and then there's a hiccup in their system, it kind of just gets annoying to me because then you literally send them messages just as poor and they can literally get back to you.

[00:33:47] Who knows when? And I love some of the companies who just take advantage of the pandemic and as I well, due to high volume and everything, we'll get back to you like whenever. And like,

[00:34:03] thank you. I was like, am I talking to customer service at Comcast? I'm sorry I said that. I feel your pain, Jimmy. I feel your pain. Yeah. Hello, this is Comcast, this is Sarasit. They might as well just play Jeopardy music. Sometimes they do.

[00:34:26] They might as well. Well, thanks for being on the show and I'll leave all your links in the show notes and let's stay in touch. That sounds great. Thanks so much, Jimmy. Thank you for having me.

[00:34:41] It was a pleasure. Thanks again. We are AudioStack.ai. Combining AI writing, the best synthetic voices with production and delivery, be it ads, podcasts or videos for video. Just like this ad, how would you utilize AI audio for free?

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