Episode Four: Siblings as Autism Caregivers - Interview with Alex

In this episode, two siblings from different parts of the world discuss the psychosocial issues of caregiving for a sibling. Alex is the guest today. We will examine the need to have open discussions with family members regarding long-term care planning and the importance of the role siblings hold in the safe space they may provide their autistic adult sibling.

Resources in Canada that were discussed in this episode

Centre de readaptation de l'Quest de Montreal (CROM)—Center for rehabilitation in West Island Montreal, Quebec—is an organization that provides services and activities, housing, and support for autistic adults over the age of 18.

Address: 8000, rue Notre-Dame, Montreal (Lachine), QC H8R 1H2

514-363-3025

Resources in Massachusetts Discussed in this episode

Department of Developmental Disabilities 617-727-5608; Videophone (VP) (857) 366-4179

https://www.mass.gov/orgs/department-of-developmental-services

Social Security Insurance - 1-800-772-1213

https://www.ssa.gov/ssi

Social Security Disability Insurance 1-800-772-1213

https://www.ssa.gov/benefits/disability/qualify.html

Advocates, Inc. 508- 628-6300

Other Resources Autism Self Advocacy Network (ASAN):
https://autisticadvocacy.org/

Drexel Autism Institute (A.J. Drexel Autism Institute):
https://drexel.edu/autisminstitute/

Department of Developmental Services (DDS) Adult Application (Massachusetts): 

 https://www.mass.gov/lists/dds-eligibility-forms

Department of Developmental Services (DDS) Adult Autism Resource Guide (Massachusetts):
This is the link to the resource guide we discussed in our episode
https://static1.squarespace.com/static/518bb7cde4b0d1e7bd9c37b5/t/5c58694253450a702c533881/1549297988292/DDS+NE+Region_2019+Adult+Autism+Resource+Guide_Final_020419.pdf

Resources to Help with Services Navigation for Every State

Thank you for tuning into Flourishing: Caregiving Autistic Adults Podcast series. Please take a moment to review the attached resources that may assist you in navigating your caregiving responsibilities beyond age 22. 

The Association for Autism and Neurodiversity (AANE) is located in Massachusetts; however, they offer their support nationally, to every state. The organization understands the caregiving journey, and many are caregivers themselves.

Here are Some AANE Programs That Pertain to The Service Cliff

Benefit Navigation and Guidance: AANE is aware of the supports and benefits by each state and can provide you with this information. They also offer a free webinar on finding public benefits for autistic adults and can tailor the information to your specific needs.

Support Groups and Coaching: AANE offers support groups and individualized help for the specific issues you are facing.

Contact Information: AANE: www.aane.org

85 Main Street, Suite 3, Watertown, MA 02472

Research Articles on Sibling Caregiving and Other Articles

Dyer, J. T., & Gushwa, M. (Eds.). (2024). DEIPAR Deeper: A curricular social justice framework and culturally responsive evaluative tool. In J. Dyer & K. Flores-Carter (Eds.), Infusing social justice into social science practice (pp. 53-65). Kendall Hunt Publishers. Kendall Hunt.

Flourishing: Resource Directory

Services, benefits & navigation tools for autistic individuals across the lifespan 

To ac

Transcript

Stacey Kohler, LICSW 0:03

Welcome to Flourishing, Caregiving Autistic Adults Podcast. I'm your host, Stacey Kohler, a social worker with nearly 30 years of direct clinical experience and a caregiver of an autistic adult myself. So welcome to the show. I want to highlight a social justice framework that underpins this episode, and it's called DeepAr. It's a framework that really helps social workers look at all aspects of social problems, and it stands for diversity, equity, inclusion, intersectionality, power, analysis, and anti-racism. So in this podcast series, each episode, we'll be discussing an issue related to social work and social justice. It was created by Dr. Dyer and Dr. Gershua. In this episode, we'll explore the lived experience of siblings as caregivers after the primary caregiver passes away, and the realities often experienced by siblings, which demonstrates a difficulty coping with the new caregiving responsibilities, the need for support earlier on for these siblings, and the importance of engaging in family conversations that are facilitated by professionals to discuss options and alternatives to care, such as services, guardianship, and housing. We will hear from Alex, a caregiver in Canada. Let's listen in.

Alex Hubar 1:47

Hello.

Stacey Kohler, LICSW 1:48

Hi.

Alex Hubar 1:49

How are you?

Stacey Kohler, LICSW 1:51

Doing okay. How are you? Thank you very much for agreeing to do this. I appreciate it. The purpose of this podcast is it's really for my capstone product. It's looking at the caregivers' experience from an intersectional point of view. So looking at a lot of different identities and how they come together, how they play out in the caregiving journey. The research that I've done has been primarily on maternal caregivers because that's one of the areas I had to focus on. But there is a lot of research on the intersectionality of male caregivers that are siblings, that chose to be caregivers, that didn't choose to be caregivers. So I really appreciate you being on. Do you want to introduce yourself to the audience?

Alex Hubar 2:50

I'm in my early 60s. My parents are deceased, and I have a younger brother who's on the authority spectrum that I oversee as a care to a certain extent.

Stacey Kohler, LICSW 3:05

And you're in Canada, is that correct?

Alex Hubar 3:08

Yes, I'm in Montreal, Canada.

Stacey Kohler, LICSW 3:10

Oh great. And what do you do for work, Alex?

Alex Hubar 3:13

I'm an educator for the Anglophone part of the social service system that's in Montreal. And I work with youth between the age of 16 and 25.

Stacey Kohler, LICSW 3:27

Wow. That's excellent. And you take care of your brother intermittently.

Alex Hubar 3:33

He comes to the house or even a group home with an agency that looks after mentally challenged adults, but I am the one in touch with his caretaker, and I take him out often and I make sure that his financial needs are taken care of.

Stacey Kohler, LICSW 3:51

I understand that role was new to you. Would you be comfortable talking about that?

Alex Hubar 3:57

I always helped out when I was at home with my brother. However, when my mom passed suddenly, then I had to uh become more involved. And I had been away living away for many years, so I came back to Montreal primarily to be a support for my brother.

Stacey Kohler, LICSW 4:15

It must have been a huge challenge to do that. You were in a different part of the country and you dropped everything.

Alex Hubar 4:25

Pretty much, yeah.

Stacey Kohler, LICSW 4:26

Yeah.

Alex Hubar 4:27

Sold as much as I could, and then yeah, came back. However, I gotta say that since my mom was starting to get older, it wasn't my plans to come back. Maybe, maybe, but not as urgently as I did. I probably would have come back, but maybe not that year, but maybe the year after. I was getting ready to come back.

Stacey Kohler, LICSW 4:48

So you had already thought about whether or not you would take on the role as caregiver, and you decided that you were, but it just it was a crisis situation when you so Alex, your brother, Philip, he's my half-brother, and you're my brother, and I know that you were really enjoying the west part of Canada before this occurred.

Alex Hubar 5:15

Yeah. That's true.

Stacey Kohler, LICSW 5:17

Was Philip at home at the time?

Alex Hubar 5:19

Yeah. Wow. Yeah. So when mom passed away, he was living with her, and he was unfortunately unable to ask for help. So he probably was with the corpse for a few days. Because my mom wasn't answering the phone when I was phoning her. So we sent someone to check in on her. There had been a couple of days before I left the message, and then we got worried enough to send somebody.

Stacey Kohler, LICSW 5:43

Oh wow. I really appreciate you being willing to talk about this. I know it's very difficult, just for the listeners out there. Philip is non-verbal, I believe.

Alex Hubar 5:53

He does he's basically verbal.

Stacey Kohler, LICSW 5:57

Yeah.

Alex Hubar 5:58

But he's not that advanced to talk about concepts or how he feels exactly, or but he can ask for certain things. He is somewhat verbal.

Stacey Kohler, LICSW 6:09

Okay.

Alex Hubar 6:09

But maybe at the level of a even some two-year-olds talk a lot, so I would say maybe like a year and I don't know, it's hard to say exactly because they're all different, right? So some ways it could be more gas than other ways, but but he's got a basic level of verbal.

Speaker 1 6:26

Mm-hmm. So he was at the house, and it must have been really sudden to try to navigate care for him. I know it was a rough situation. In the United States, here, it's usually the mom or some relative that has to leave their job and really concentrate on the care for the person who's dependent on them. And in this instance, it was you had a job, right?

Speaker 6:59

Yeah. In Quebec, when you're diagnosed with a disability, you actually become part of the social, what can I say? It's you go into disability payment.

Speaker 2 7:11

Yes.

Speaker 7:12

So it's like welfare basically.

Speaker 2 7:14

Okay.

Speaker 7:14

But you get more money because you can't go back to work. Work is not an option. So he was already in that system. And then he was in a group home prior to being with my mom. And my mom took him back for several years. So that's an option. So then it was an emergency for us to get him into another group home. And we had some contacts. So it was like an emergency placement to a social worker to get him placed because it was gonna be a while before I could come back. I couldn't come back and to go back, close up my work, sell my things, and just driving back from the West Coast, that takes time too.

Speaker 2 7:55

Yes.

Speaker 7:55

That's like a win weeks. And also I have to work or else we'd be in poverty.

Speaker 2 8:01

Oh yeah.

Speaker 8:02

We can't live on a check alone.

Speaker 2 8:04

Absolutely.

Speaker 8:05

So that's what had to happen. And my brother, even though he's fairly good functioning, like there's some things he can't do for himself. So like emergency communication, he wouldn't be able to cook for himself, organize his time, all that kind of stuff. That's not really in the cards for him. So then he needs constant supervision. At least if something happens, someone has to be able to eat.

Speaker 1 8:27

Oh, okay. Does he like elope? Does he open the door and walk out?

Speaker 8:32

No.

Speaker 1 8:33

Okay.

Speaker 8:34

No, he's not using that. He's actually fairly on the easier side to deal with.

Speaker 1 8:40

Oh, okay.

Speaker 8:41

He gets anxious once in a while, but however, he's not that hard to take care of. Yeah.

Speaker 1 8:47

Yeah, I can't even imagine what that was like for you, but you dropped everything and you ended up working in a position that's very much organic to you.

Speaker 8:59

I had that job before I left Quebec.

unknown 9:02

Really?

Speaker 9:03

I worked in the same agency. Then when I came back, friends of mine said, why don't you reapply? So that made sense. So that's what I did. Oh, that's great. That's great. Yeah. But that job is also demanding. So there's that aspect to it as well. Like you're dealing with youth that have their own issues and crisis and so on and so forth.

Speaker 1 9:23

Yeah. So I'm in the US and I am just in the process of going through the caregivers' journey of finding resources that are out there so that I can share them with my clients. I have a private practice, and I noticed that 50% or more of the clients that I was having counseling sessions with, they were presenting that there were challenges with caregiving their autistic adult. And it's just really incredible just to see the increase in the numbers here and all over. We currently don't have any services in place. I am at home most of the time. And my kiddo here is 22 and just needs that kind of constant cueing, and they're pretty independent. Like they go to community college, their writing is exceptional, they're funny, big sense of humor, but typically at home. So there's not a lot of social interaction other than community college. And the other one lives in Georgia in a house very close to my mother. He's able to go over and say hi, or he helps in her garden. So getting back to your brother, what are some of the supports that he has in place at his residence? Does he go to a workshop? Does he like to do artwork?

Speaker 11:02

In Quebec and also where I live, which is the west of Montreal, there's been an association for that type of clientele for many years now. But in his case, he's quite busy. He used to go to school, but now he goes to a workshop three days a week. He also participates. There's like a Friday nights dance club that the whole community participates in. He's in Special Olympics. And so Special Olympics is twice a week on the weekends. So one day is track and field, one day is bowling. And there's also, I think they go to the pool one night per week. He's pretty busy and well, he's well structured.

Speaker 1 11:40

That's wonderful.

Speaker 11:42

That's one of the reasons where I sometimes I was thinking of moving back to the West or but where he is now, with the community as now, that would be very hard to replace. And the services he gets. Yeah.

Speaker 1 11:53

So there's a feeling that you have that you want to be involved and you want to be there for him. But there must be another part of you that never really thought that this was going to be the case, that you were going to be like a caregiver full-time.

Speaker 12:09

I think I'm not really caregiver full-time.

unknown 12:13

Okay.

Speaker 12:13

Because he's at the group home, right? He's not with me 24-7.

Speaker 1 12:16

Right.

Speaker 12:17

So I see him a few times a week, and usually on Sundays, I'll take him home, spend the day with him. However, I think I always knew, since he was born, that when the time came, I would be overseeing some of his life. I'm quite a bit older than he is, because it was my mother's second marriage. Almost 14 years difference between the two of us.

Speaker 2 12:38

Wow.

Speaker 12:38

I think I always knew that how it would play out that I did not know. But I knew that probably I would be involved at some level with him. Yeah.

Speaker 1 12:48

I understand that a lot of times there's responsibilities that are put on siblings. Like the parents will put the responsibility on the brother or the sister to take care of the child, like parentified. I'm not sure the word for it, but it's like a parentification.

Speaker 13:06

Parentified. Yeah. I think parentified is a good word.

Speaker 1 13:10

Yeah.

Speaker 13:11

Or maybe the expectations. It's hard to say exactly.

Speaker 1 13:14

And what do you enjoy doing with Philip when you have him on the weekends?

Speaker 13:20

It's nice to have some family time because I'm also away from the rest of the family as well. So my other brother was in British Columbia as well, so he stayed. So that's nice. And right now we're mid-winter, so there's when he comes over, he likes to draw. Oh, I mean drawing materials, and then he likes to watch anything to do with Pinocchio.

Speaker 1 13:42

He likes to watch Pinocchio.

Speaker 13:44

Yeah. So whatever you can find on YouTube, that's Pinocchio related, he likes to watch. So then when he comes over, usually I mean she eats good food, like home cooked food.

Speaker 2 13:54

Nice.

Speaker 13:54

Yeah, and he draws and he watches Pinocchio. There was a time where we went to see movies. In the summer we'll go for walks. There's different activities that he enjoys that I try to facilitate. At the same time, though, he is really busy where he is at the group home. So it's good for him to have a bit of downtime as well.

Speaker 1 14:12

Absolutely.

Speaker 14:13

He's got his own little bubble there that he doesn't get otherwise as much.

Speaker 1 14:19

Yeah, that's great. I'm just learning a lot about the differences between Canada and the US in terms of the supports, and really sounds like he has a good structure. So that's great.

Speaker 14:34

Yeah. There's a whole network of these group homes all over the province.

Speaker 1 14:39

You know that my uncle had a developmental disability and he resided at, I believe, the Miriam home.

Speaker 14:48

Yeah, in Montreal, yeah.

Speaker 1 14:49

Yeah.

Speaker 14:50

That's the Montreal central area.

Speaker 1 14:53

Yes.

Speaker 14:53

So Miriam takes care of that. And because we're in the West, my brother's in Chrome.

Speaker 1 14:59

Oh, okay.

Speaker 15:00

Which is the western part of the but very similar organizations.

Speaker 1 15:04

Okay. Yeah. In like in the area where I am in the states, they do have an organization that does have housing and supports for kiddos who are on the spectrum and who have delays, disabilities, and they do have group homes out here as well. But I don't think it's the same. I'm not sure. I'm just in the process of exploring what are all the options for housing for autistic adults. How old is Philip?

Speaker 15:41

Philip now is 48.

Speaker 1 15:45

Wow. 48.

Speaker 15:49

So if you want to know, it's a French acronym, is for Sol de Readaptation de l'Ouest de Mallard. So Center for Readaptation of Montreal, West or West Montreal. That's what it stands for.

Speaker 1 16:03

Okay. Thank you. So you're working with kids just like your brother?

Speaker 16:11

Not exactly. They're youths that are being in under the care of youth protection in Quebec. They're not, in the circumstances they're in, they're not, they don't live at home. They live in the readaptation center. So either in the community or it's our youth centers. But I have to say that as time goes by, there's more and more of our youth that are on the spectrum. We have more and more of those clients.

Speaker 1 16:38

There was a research study that showed that in the UK, the rise of autism was like 787%. I think that there is an increase in just in the existence of autism itself.

Speaker 16:52

Why do you think now it's like one in 27 in North America?

Speaker 1 16:59

Yeah. The CDC, the Centers for Disease Control, and the Drexler Foundation, I think they keep a lot of tabs on the statistics here, and I might be incorrect, but it's one in 36 overall, and it's more prominent in boys.

Speaker 17:19

Yeah, boys and artists.

Speaker 1 17:25

Anyway, I always wondered about Brian.

Speaker 17:28

Well now, anything like ADD, ADHD. Yes. Everything that's neurodivergent now is on the spectrum, right?

Speaker 1 17:35

Yes.

Speaker 17:36

Impulse control, all that kind of stuff. It's on the spectrum somewhere. So there's a more and more. If we go back in the day when I used to work in youth care like many years ago, it was definitely kids that had some of those issues, but they didn't diagnose them the same way. But they had that neurodivergent issues.

Speaker 1 17:56

Yes. And I love the neurodivergent approach as well, which is really looking at the individual and understanding that the deficits are within the structure and the system itself and the way in which we're not really not everything is universal design. Really focused on folks being neurotypical. Yeah. That's a challenge too. The youth that you work with are in like the justice system, so they got in trouble or not necessarily. Okay.

Speaker 18:32

So sometimes they were identified or flagged because it was noticeed to the community that they weren't given the care they needed. A lot of times they're flagged in school. Either they're not showing a property dress, there's not enough food, or there could be behavioral issues or all that kind of thing. And then it's once they're flagged, then there's investigations. And if they're deemed not to be able to be safe at home or to get their needs met at home, then there's different avenues depending on the behavior of the youth or child. There's a lot, well, there's a wide range. And sometimes they are involved, sometimes they do get in trouble with the law as well. There's a mix a little bit. Yeah. But over the last few years, seems to me, anyways, there's less of them there because of their problem. Because the problem is a law. It's more youth protection. Because there's strong offenders and there's youth protections. So when I was working many years ago, to me it seemed that the percentage was like 70 youth protection and maybe 30% young offenders. To me, it seems like it's 90% youth protection now and 10% young offenders. To me, anyways, it's just that there's been a shift.

Speaker 1 19:45

Oh, so there has been a shift?

Speaker 19:47

In my opinion. I don't have the stats there. But of all my clients that I worked with over the years, in the past six years, let's say there's only one of them that was young offenders.

Speaker 1 19:58

The other ones were do you work with the youth themselves or do you also work with the family?

Speaker 20:08

The job that I do is the service for older adolescents. I prepare youth that most likely will not have a home to go to when they age out to get ready for independent living.

unknown 20:22

Oh wow.

Speaker 20:23

So I don't work with the families too often. There are other people in my agencies that that's their department. They have family support or going back home support, but it's not my department. Yeah.

Speaker 1 20:35

Wow. And they don't have a home to go to because the family isn't involved or either not involved or not capable of giving them environment working rule.

Speaker 20:47

It's just not stable enough.

Speaker 1 20:49

And do you have any indigenous clients?

Speaker 20:52

Yeah, I've got clients from the far north.

Speaker 1 20:55

Wow.

Speaker 20:55

The Inuit and uh Inuit? Yeah.

Speaker 1 20:59

Oh, that's cool.

Speaker 21:01

It's pretty common that they're not either like indigenous or half indigenous. There's a connection to the community. That's not rare. That's not the majority of my clients though, but the substantial amount.

Speaker 1 21:13

That must be interesting to work with diverse populations like that. And I know that there's a lot of distrust in providers, especially because of the harm that has been done over the years.

Speaker 21:28

With good reason. Yes.

Speaker 1 21:31

Yeah. And specifically harm that was done to the indigenous folks. So you don't have any French speaking clients. Yeah.

Speaker 21:47

We have all the Anglophone kids. Now some of my kids are bilingual.

Speaker 1 21:51

Okay.

Speaker 21:51

But they're mostly Anglophone speaking.

Speaker 1 21:55

Okay.

Speaker 21:55

Yeah.

Speaker 1 21:56

So Francophone.

Speaker 21:57

We're a very small part of the system. We're the last little area of Anglophone in Quebec.

Speaker 1 22:03

Oh, okay.

Speaker 22:05

The majority of the services are done in French. We might represent, I don't know, I'm just gonna guess five percent of the population, maybe.

Speaker 1 22:13

Oh wow. I don't even know what to say about that. It sounds like it's really different in Canada than it was what I remember.

Speaker 22:23

The Quebec thing more than the county thing because Canada's a majority anglophone. Okay. But in Quebec, it's a French province. And over the years, they've made it more difficult for the Anglophones to get services in English, even though they have to give them. They've done things to make it harder for the Anglophone community to get bigger. Because the immigrants now have to go to French school. And as soon as they go to French school, even though they might be coming from the Caribbean where they speak English, they're going to be classified as francophones.

Speaker 1 22:54

Oh. So as soon as somebody immigrates to Canada, they have to, and in their school age, they go to a French school. Okay, so in Quebec. Sorry, I misspeak sometimes, so I apologize. Yeah. Wow. That's amazing. What do you think is the most important thing in terms of working with people from diverse cultures that are also neurodivergent? What do you feel are some of the beliefs or the philosophy or the here we do the strength-based perspective, which really focuses on what's working and the benefits, just the process of accepting and celebrating where the child is or where the youth is and trying to start where they are. What are the perspectives that you use?

Speaker 23:57

As you said, so in our agency, what you said we apply, but in my personal practice?

Speaker 1 24:04

Yes. I'm more interested in your personal practice.

Speaker 24:07

I have to like adapt and take time to understand their communication style and not assume that the way I say it, how I say it's going to be understood, the way I want it to be understood. So I take time to get to know the youth, and then I try to like communicate in ways that it makes sense to them. For example, Inuit kids, they're more kinesthetic communicators than all outverbal. They don't say that much. Right? So then you have to navigate that a little bit differently. That's one example. But every youth is different. So you gotta take your time and find out what's gonna make sense for them and the speed that they process the information, and it's just a matter of adapting to them as more than that. They have to adapt to you.

Speaker 1 24:59

Oh, I love that. Yeah. Is there any kind of philosophy that you go by or perspective that you follow?

Speaker 25:09

Personally or agency-wise?

Speaker 1 25:11

I would imagine that personally I'm trauma-informed, and I also have a background in hypnotherapy. So I believe in the power of words and how the messages that we express when we're working with a youth or family, that's important. I was wondering what what are core philosophies or our agencies focus a lot on trauma awareness and how it affects the person.

Speaker 25:45

And you also have a background in hypnotherapy.

Speaker 2 25:48

Yes.

Speaker 25:48

I don't use hypnotherapy directly, but conversationally use some of the techniques just so they understand it. My philosophy is to give space to the client for them to be able to hold the space, believe in them. Yes, hold a space where maybe you didn't get so many people in their lives believing in them. Yes. And like the surrogate, kind of a surrogate parent, a positive surrogate parent. Yeah. Don't know if that explains it all, but yeah.

Speaker 1 26:24

I think it explains an awful lot. We bring a lot to the work that we do, and we bring really our authentic self, but our authentic self is compassionate and cares for other people. And I think it is a really good approach to start where the child is. What would you say you'd recommend to other siblings? Because I know that in a podcast setting, which is very new to me, I have never listened to podcasts. Have you listened to podcasts?

Speaker 26:57

I do listen to podcasts.

Speaker 1 27:00

Oh, okay. What podcasts do you listen to?

Speaker 27:04

All kinds.

Speaker 1 27:05

I think I was like late to the show. I didn't know that much about podcasts. And I know that a lot of people listen because they want to get ideas about how to cope with different situations. There's a lot of siblings that don't want to take on the role of being the legal guardian or the person who's responsible. In the US, there is the if a parent passed away, it would be a crisis situation. The child would be probably presenting in the emergency room at some hospital. If you could give recommendations to other siblings that maybe went through what you went through, what would you say or recommend to them? What advice do you think you would give?

Speaker 27:58

I think for the siblings that do step up, my advice is balancing your life and having enough time for self-care. It is demanding because you've got this responsibility that's hard to understand unless you're there.

Speaker 2 28:13

Yeah.

Speaker 28:14

So I think for me, it was like balancing how much time and energy I could give, considering everything else in my life.

unknown 28:22

Yeah.

Speaker 28:23

Like I said, the job I have now is demanding as well. So that would be my advice is learn it, like the self-care balance. You can't do everything. You can only do so much. And you want to like access as many external resources as you can. Because good for the other sibling that has is on the spectrum. Yeah. To get different stimulations from different people.

Speaker 2 28:44

Yes.

Speaker 28:45

And to be connected to as many resources, the positive resources as possible. So I think that's important to get that kind of a break.

Speaker 1 28:53

Yeah.

Speaker 28:54

Especially for those that are very caring and involved with their heart. You could do too much. And then you burn out, you burn out, then you're not helping anybody. That's just so far.

Speaker 1 29:03

In the caregiving community, that is, you bring up a good point. When you care too much and you do too much for the kiddo, then they're not really learning from their mistakes, or you're really trying to protect them, and it's a little bit too much.

Speaker 29:20

So it's a balance. Yeah, the balance is the important part. And then for the siblings that aren't as present because they're not con they're uncomfortable or they find it too hard. I say do what you think you can do.

unknown 29:36

Yeah.

Speaker 29:36

Because whatever you do is going to be appreciated. If you even if you see your sibling once a month or once every two months in a big picture, it makes way more difference than you think it might make. Maybe if you just take them out for a hamburger or a movie or whatever. You don't have to do everything that you don't think you can be able to do, but whatever you can do, I think it would be good to do it.

Speaker 1 29:58

Oh, yeah, absolutely. I the idea of getting together with the sibling, but some siblings don't get along. It's just siblings are sub siblings bring up a lot of there. And the other piece is that some have said that they felt like a parent really early on in their life. So they talk about that a lot, like online. But what would you say for siblings that aren't involved? For example, I'm not that involved, unfortunately, with Philip as much as I would probably like to say hi to him more. I think I should say and say hi to him more.

Speaker 30:50

In your case, the circumstances that made that more difficult, as we both know.

Speaker 1 30:55

Yes.

Speaker 30:55

Just from a distance point of view and the way the family was separated for quite some time.

Speaker 1 31:01

Yes.

Speaker 31:02

But overall, like I said, like find a way to be a little involved would be my advice. You don't have to do something extraordinary to make a difference. Don't let the little bit that you can do or that your fear of not being able to do enough get in the way of the little bit you can do. That's what I'm gonna say. Because every little thing that you do does make a difference. It makes a difference for the sibling that does take care of the the other sibling. And it makes a difference to the sibling. Those connections are they're difficult for those that population, right?

Speaker 1 31:36

Yes, I think so. And also it's very difficult for the sibling that's away. Like you're in Canada, you're involved, and there's some guilt that I have that I'm not involved. Both of my kiddos were very complex and probably met a lot of the criteria like for level two autism. Now it's considered level one, level two, level three. Philip would probably be like a level three.

Speaker 32:09

Philip, because he's got like a multiple diagnosis, yeah. It's hard to pinpoint exactly. I guess he would have to get reassessed, but like he's got some bipolar stuff, some anxiety stuff. He's got intellectual disability as well, and then he's on a spectrum as well.

unknown 32:27

Yeah.

Speaker 32:28

Like I said, they're all unique though, every one of them.

Speaker 1 32:30

Everyone is unique. Yeah.

Speaker 32:32

Yeah.

Speaker 1 32:33

They're also finding that the co-occurrence of anxiety and depression is about 75% from a couple of studies that I saw here in the United States. I'm not sure. Just very interesting.

Speaker 32:47

Yeah. But I think like guilt. I'm getting older now, so maybe I'm getting a little wiser. But I think guilt is gets to be a waste of time after a while.

unknown 32:57

Yeah.

Speaker 32:58

All what's done is done, and sometimes there's good reasons why it happened the way it happened. Also, I was awake for many years when I went to British Columbia.

Speaker 1 33:05

Yes.

Speaker 33:06

Took me a long time to let go of the guilt of that too. But there's two sides to every coin. It gave me time to be disenmeshed from the family as well. Find my own because I was also parentified to a certain extent, right?

Speaker 1 33:20

Oh yeah. I think so.

Speaker 33:22

Felt responsible because you have a good heart, so it's easy to go to that caregiving. So yeah, guilt, I think speaking that go get a lot on your plate, you personally, and yeah.

Speaker 1 33:35

I think me personally, it's an awful lot to be a mother of two kids. The oldest one really just really wanted to leave. He was so wanting to be independent. And when he was a child, he was pretty angry, violent even.

Speaker 33:53

Philip Hugh went through his violent face. Yeah. When at puberty, they've got all that energy and all that stuff coming in and don't know what to do with it. And yeah, they get frustrated. Yeah, that went through tough time that way for a couple of years.

Speaker 1 34:09

I don't think that the general community or physicians or nurses, just like the medical folks, that see our kiddos outpatient, understand the level of chaos that can occur in a house where you have an autistic young adult and or an autistic child. And like you said, everybody is different. But I had an older boy, and then I had the younger one who was banging in their head an awful lot.

Speaker 34:42

Yeah, Philip did a lot of self-arming too.

Speaker 1 34:44

Oh, he did?

Speaker 34:45

Banging in his head, biting himself, scratching himself.

Speaker 1 34:51

There's not that behavior though now for my kids. I think that they're doing a little bit better, but I worry about the older son. And then there's also the financial aspect of it too, making sure that he has a car, making sure that he has a roof over his head because of his. I don't, I just don't think it would be a good idea for him to have a roommate. Whereas my younger kid probably likes it because we've got a few family members living here. Yeah, with us. Yeah, I really appreciate you coming on and doing the podcast with me and talking about these things. I do have a question. In the school that I'm going to now, we have a diversity perspective that's really cool. It's a social justice framework. And what we do is we use that framework to look at everything that we do. So it focuses on diversity, equity, inclusion, intersectionality.

Speaker 35:59

Yeah, or you do the same. We have the same, we do some of the same things, I think.

Speaker 1 36:05

You do?

Speaker 36:05

Yeah. Yeah.

Speaker 1 36:07

And there's also a movement for more understanding of intersectionality, at least in the United States, in the social work community, that is. DEI has seemed to have gotten a bad rap, but I really believe in it. We really need to just really embrace everyone. What program do you have there? Do you have a belonging? Is belonging a part of your we've been through a couple of models.

Speaker 36:37

We have for many years a circle of courage. It's actually from the States.

Speaker 2 36:41

Okay.

Speaker 36:42

Which were like there were four quadrants, and belonging was one of them. I don't remember everything, but there was leadership, capability, belonging. So there was different quadrants. So we used that framework for many years, and now it's switched a bit, but we still have that in our culture.

Speaker 1 37:02

Was there another framework that you used to use?

Speaker 37:05

Lately we had a trauma-based framework, and also we have I don't even know what they call it out of 10 in front of me, but it's like you look at the stability factors in someone's life and the risk factors.

Speaker 1 37:19

Yeah.

Speaker 37:20

And then you try to maximize all the stability factors.

Speaker 1 37:24

Oh, nice.

unknown 37:25

Okay.

Speaker 37:26

Yeah.

Speaker 1 37:26

In social work, we look at facilitators, which is like anything that is going to help the family be successful, and then barriers.

Speaker 37:37

And there's a lot of same kind of thing, different language, but probably same thing. Yeah.

Speaker 1 37:44

One of the challenges here is that there really there's a knowledge gap among caregivers of autistic adults about what the supports and services are. And I openly acknowledge that I also have deficits in that as well. I did try to look into independent living and resources similar to what I think you do in Canada. My older son is, but there was a service vacuum there, which meant that there was no specific independent living at that time.

Speaker 38:18

And that we did get our version of welfare where you are if you got a diagnosis that you can't work.

Speaker 1 38:25

The older boy can work. So he's definitely working. The youngest kid probably could apply for some support, but it would be needs-based. If the family did not make a certain amount of money, he would be eligible to collect like a monthly check. So we have something called SSI and SSDI. And actually, I have a step-by-step process of how to apply for that on an earlier episode, but it's a maze. It is a fragmented maze to really comprehend and understand it, to process it. And when you're a parent of two kids on the spectrum, I'm navigating the kid that's far away, and I'm also helping I'm at home an awful lot with the younger ones. There's just so much time in the day to be able to learn all of these things. But the general guise is that when a child transitions, we call it the service cliff, and they're supposed to like really have already coordinated services before they graduate high school. But in the case with higher functioning kiddos, with Asperger's or with PDD NOS, which is like progressive developmental disability not otherwise specified, all of those diagnoses got popped into one diagnosis in the DSM, the diagnostic and statistical manual. But I suspect that because the kids were verbal, because the kids seemed to be independent, there wasn't that coordination.

Speaker 40:10

Those kids that are borderline there, they fall through the cracks very easily.

Speaker 1 40:15

Yeah.

Speaker 40:16

We have the same challenge here because they're the kind of eye functioning, but they still need support. It's hard because they'll fall, it's much easier to fall through the cracks.

Speaker 2 40:25

Yeah.

Speaker 40:26

The ones that are obviously can't work, that's easier for them to get services in some way.

Speaker 1 40:32

I think here also, like individuals who also have a co-occurring intellectual disability are, I think are more likely to get some more supports. And there is a program where you can apply, it's called the DDS, but they provide some support, case management, very similar to your agency. They go in, find out what a person needs. We did apply for the older son, DDS. They wanted documentation and they also wanted new testing done.

Speaker 41:09

You got that happened depending when the last diagnosis was and all that kind of stuff. Yeah.

Speaker 1 41:14

So we went through really many hours process. We had multiple interviews, and he wasn't really independent then. He wasn't working, and they said that basically he could apply for social security. But the thing is that they have to also be involved in that. There's this inclusion of the autistic adult in the process, and you've got to get them to want to apply for these supports and services. And sometimes they don't want to comply.

Speaker 41:52

The other challenge with the ones that are borderline there, they don't want to always be involved. So it's hard for them to get the services.

Speaker 1 42:02

So getting back to this idea that inclusion, right? Nothing about me without me in the autism community, there's that saying that you really have to involve the autistic adult in all of the decisions. There were decisions that were made that the paperwork wasn't filled out, or but everything maybe is okay.

Speaker 42:31

It's hard for them sometimes to accept or to follow or the whole process. We have a lot of these mutes that are fall in that category. Asperger's, or they've got a little bit on the spectrum, and then it's hard for them. They have to be there, but at the same time, they don't always show up. They're very dysregulated, so it's makes it difficult. In the West Island, we do have where Philip is.

Speaker 1 42:55

Yes.

Speaker 42:56

They are group homes for that clientele, like the semi-independent.

Speaker 1 43:00

Oh really?

Speaker 43:02

So if they're semi-independently supervised.

Speaker 1 43:04

Okay.

Speaker 43:05

That does exist.

unknown 43:07

Yeah.

Speaker 43:08

So they're higher functioning, but they still need supervision.

Speaker 1 43:11

Right. Yeah.

Speaker 43:13

So sometimes we have the supervised apartment. So they have their own place, but someone checks in with them on the regular.

Speaker 1 43:24

But there is a lot to be said about having another person other than the parent.

Speaker 43:30

Yeah, it may be somebody else.

Speaker 1 43:32

To validate, yeah, what your mother is saying or what your father's saying is really true. You need to follow up on this, or you need to. But I would imagine it's very difficult for folks sometimes to navigate all that paperwork when it's hard to just navigate day to day. Anyway, do you have any parting last words of what you think? I think in terms of self care, I think would be really good. Because I know that in the community, in the autism caregiving community, we've had a lot of crises and a lot of tragedies lately, as you've heard on the news, multiple sad stories. What would you say to just the caregiving community in terms of getting the support that they need and not being scared to pick up the phone, call the counselor or a social worker or a therapist? Like I have a private practice where I see folks for counseling.

Speaker 44:29

What would you almost think that should be like mandatory to have sort of a support network that you can access on the regular? We can have a support group of other caregivers that would talk once in a while, or I think it's so easy to be isolated.

Speaker 1 44:46

It's a very isolating experience. Yeah. And I think that's by design what go there's been just this whole history early on of just keeping Yeah.

Speaker 44:59

By the time you live your life and you like give care to somebody else, you're tired. It's just one more thing to do. So if anything, that could be facilitated more. Like I don't do it, to be honest. Luckily, because I'm in social services, there are people that I speak on the daily, so I do get some of that support.

Speaker 1 45:19

Oh, that's good.

Speaker 45:20

Because it's understood, and my team understands, they know. And then my friends also know. So I do get that. But sometimes it would be good if I had like a group that you could go to and then understand people who understand each other because unless you've lived it, it's hard. You don't understand like anything else in life. Sometimes, unless you experience it, you don't really understand it completely. Conceptually, you can understand it, you can be compassionate, but the reality is different, and all the emotional to go on with it. Yeah, there's definitely because our siblings they're not our children necessarily. So we take on responsibility that that's a bit above and beyond the good and family that people can do that. But I'm just saying, and again, it comes back to balance. You gotta do what you can do without when I was like for Philip for a long time I saw him twice a week.

Speaker 1 46:08

Oh, I know you did.

unknown 46:09

Yeah.

Speaker 46:09

For blind I stopped doing it because it was just a bit too much.

Speaker 1 46:13

And also, like you affected Wednesdays and then some.

Speaker 46:17

Yeah, Wednesdays and on the weekends, yeah.

Speaker 1 46:19

Yeah. But I think that you were trying to, like you said earlier on, care too much, or care you wanted to create that stability for him right after your mom passed away.

Speaker 46:32

And yeah, eyes on to see everything's okay, and then it's also, yeah, to create the stability was really important. But at the same time, that I realized I may not be around forever, never, you never know. He has to be able to like navigate himself as as much as possible.

Speaker 1 46:46

I think the other fear just as a parent, I know we're talking about siblings because it's really focused on your lived experience. But as a mother, I worry about what's going to happen to my kids when I die. Of course.

Speaker 46:59

Of course.

Speaker 2 46:59

Yeah.

Speaker 47:00

Of course you do. I can't even imagine it, of course.

unknown 47:02

Yeah.

Speaker 47:03

But sometimes I see because in West Island here we're we were lucky because we do have Chrome and we do have this, but I think sometimes as soon as you create links between organizations and external support, yes the better. Because let's say, for example, where my brother is at Chrome, right?

Speaker 2 47:23

Yes.

Speaker 47:24

My mother took Philip back home. I don't think that was such a great idea for her. There's a reason why she did it. It would some birth reasons, but I think for me, it would have been better if he was in the home like he was with me, which is a great place.

unknown 47:39

Yes.

Speaker 47:40

And let's say if you wanted to be with him, she could take him two, three days a week. And the other four days be there. So that he has that community uh relationships all built up already. So make them more adaptable. It doesn't have to be all or nothing.

Speaker 1 47:55

I'm looking into what's gonna be the best thing for both of them. And I am trying my best, but self-care is really important. We do a lot of activities together, which I feel self-care. We do artwork together. Recently, I taught them how to do like jewelry making. They wanted to make a necklace, so I taught them how to do that. We also do baking and cooking together. We try to teach how to make meals that are like a fish and a vegetable and a starch. And like normal, not to a normal, to just an average person.

Speaker 48:37

People know how to cook, but you'd be surprised though. You'd be surprised how many youth that I work with that they have to be taught how to cook.

Speaker 2 48:46

Oh, yes.

Speaker 48:47

You would think that they should know, but they don't know. And luckily in our agency, we have a lot of like cooking programs, and but it astounds me that they don't know. So that's really good. But is there like a community that he could go and start spending the sleeping over?

Speaker 1 49:05

That I'm not sure. He would have to make applications to a whole bunch of things, and he'd have to qualify financially for that. So he needs to apply for Mass Health and the adult DDS.

Speaker 49:20

I'm just thinking, God forbid something happens to you.

Speaker 1 49:23

Yeah.

Speaker 49:24

You don't want it to be in shock if you're not as available, or you want him to be already have those supports, like those relationships built. That's why I think that's important. It is seeing kids that they're not kids, they're adults.

Speaker 2 49:36

Yeah.

Speaker 49:37

But mom, well, including our situation, the mother kept them till the mother was or the father, whatever, it's very old, and then they passed, and then now they're scrambling because they don't have those relationships built. So all of a sudden now it's like they're not used to not being home, they're not used to eating different food, they're not used to all that other stuff. They're gonna have to get used to one day. So just to take the shock out of it, just to be exposed to it, I think makes life easier. We have one kid in my brother's home there. That's what happened. His dad was pretty old and then he passed, and the siblings can't take care of him. Luckily for him, though, he was already going to the crom activities.

Speaker 1 50:19

Yeah.

Speaker 50:19

So he knew a lot of the people already.

Speaker 1 50:22

Oh, that's great.

Speaker 50:23

Because he was going to school with them, summer camp with them, all the activities, so he knew everybody. And to a certain extent, Philip too, because Philip was with Crom. Actually, my mom was very involved at one time with that association, the West Island Handicap Association. Oh, yeah. But when she packed, there was a lot of people that knew her, and then they it was faster, I think, for him a bit. But he had those relationships.

Speaker 1 50:49

Right.

Speaker 50:49

So then when he moved into the house, he knew some of the guys there already. So it made it that was easier.

Speaker 1 50:56

There's a lot of his childhood friends are in a program in LeMass, and I recently looked into it, but it's an incredible program. I just don't think that financially we can swing that too.

Speaker 51:09

That's why too. Province we're lucky because he gets disability welfare, right? Like I manage the funds, so I make sure that there's room and board where he gets paid and it is everything is paid. But we're fortunate because if that wasn't there, like I'd be scrambling.

Speaker 2 51:29

Oh, yeah.

Speaker 51:29

It'd be very difficult. And luckily he was in that for a long time too. So he was already getting his check, and he was already Yeah.

Speaker 1 51:39

I think that there's just a lot of families that don't know what's available, and there's also like a pessimism in applying for some supports here because sometimes your needs aren't met.

Speaker 51:54

What's good with Chrome and Miriam Home is they're really good at getting welfare for the kids who got really good. I don't know, but they have an in because they're organizations, so when they reach out to get it, they usually get it pretty good pretty fast. They know what to do. They're experts at it because we deal with them all the time. But I have kids right now, I have two clients that are definitely DI and ADHD, and one's definitely on the spectrum, Asperger type. I have to apply for welfare for them.

Speaker 2 52:24

Oh wow.

Speaker 52:25

So I I got all the documentation together, but like one of them he doesn't get back to me. So he's one of those borderline kids.

Speaker 2 52:32

Oh yeah.

Speaker 52:32

I call him because I want to go to welfare office with them and I got everything ready to go, but now we're gonna try. Because that's the next step. Because with disability and a check, then I can look and get him housing.

Speaker 2 52:44

Wow.

unknown 52:45

Yeah.

Speaker 52:45

But if he doesn't show up, like there's not much I can do. I'm not a shadow, I'm just his community resource worker.

Speaker 2 52:51

Oh yes, yeah, yes.

Speaker 52:53

And then the other one, he's the e in uh from the Caribbean, and he's amazing because at the beginning there, I was very a little bit pessimistic about his outcome, but then he went. I helped him a little bit, but he went and he got himself welfare. He did all the he got his he's uh immigrant from uh St. Vincent. From very young, he was in Canada. Oh wow, but he lost his permanent residence card.

Speaker 1 53:18

Oh no.

Speaker 53:19

But he went around, he got all everything he needed, and he applied and he they sent him a new one.

Speaker 2 53:25

That's amazing.

Speaker 53:26

But that he did the heavy lifting on that. I didn't help him that much.

unknown 53:29

Wow.

Speaker 53:30

And the welfare he did by himself too. Like it's pretty amazing that this kid is doing all the air, so that's good.

Speaker 2 53:37

Yeah.

Speaker 53:38

But we have a bunch of cases like that that are like Asperger, Spectrum, like more and more. Wow.

Speaker 1 53:45

And are they working?

Speaker 53:47

Well, it depends because I've got past clients and presence clients. But that's the idea. So get their documentation and then get them to work, teach them how to save money, and then we have the housing at housing aspect. And we have our own housing in our agency.

Speaker 1 54:03

Oh, really? Oh, that's fine.

Speaker 54:04

Yeah. So we have a program which is 18 to 25 year olds. So we have two homes with six bedrooms, I think, in each. The youth that we have that age out, if they meet the requirements, they can go and live there for a couple of years where they've got subsidized rent. Actually, don't they don't really they pay rent, but they get it back when they leave.

Speaker 2 54:25

Oh wow. Okay.

Speaker 54:26

And then there's a staff there part-time and there's overnight staff. So it's a good transition between not going on your own right away. And now we just got this other housing plan where we have through the government. So what they do is a subsidized housing. They live there, they have their own apartments.

unknown 54:43

Wow.

Speaker 54:43

But they get like most of the rent paid by the government.

Speaker 1 54:47

Oh, that's cool.

Speaker 54:49

That just started now. We were fortunate.

Speaker 1 54:51

Wow.

Speaker 54:52

Because rent in Montreal is getting crazy now.

Speaker 1 54:54

May I ask?

Speaker 54:56

It's prohibitive. Let's say anywhere near downtown in all that area, even the west, like one bedroom is fifteen hundred bucks. Oh my God. And if you're making minimum wage, I'm sorry, but more than one paycheck is going towards your rent.

Speaker 1 55:12

Oh, absolutely. Absolutely.

Speaker 55:15

Oh crazy. Before back in the day, you could do it, but now it's like crazy.

Speaker 1 55:20

Yeah, the expenses are just enormous.

Speaker 55:23

Everything, groceries, everything's going up, right? So now they take a quarter of what they make, and that goes to rent. So if they make, let's say, ten thousand dollars a year, yeah. They take two thousand five hundred divided by twelve. So then and when you go past forty thousand dollars a year, then you're out of the program. You can keep your apartment, but now the rent's on you.

Speaker 1 55:44

Oh my god.

Speaker 55:45

Wow. So do you get the chance? So that's being very good if we were lucky. Yeah.

Speaker 1 55:50

I do think support is really good. I do have a lot of friends that have kids on the spectrum, family members. I have you. So I do create a lot of people.

Speaker 56:02

But you guys have like your own association.

Speaker 1 56:04

Yes.

Speaker 56:04

But all of your friends that have kids on the spectrum, maybe you guys should create some kind of association.

Speaker 1 56:11

There is one here in New England. It's called the Autism Association. It used to be the Autism Association of New England, but now it's the Autism Association and Neurodiversity. So the acronym is ANE, and they've got some great resources, which I did actually put on one of the podcast episode webpage just so that people could. But they do, they have support groups. They have this other program called Life Map, where it is private, I believe, but it's counseling, it's looking at the skills that the kid is interested in.

Speaker 56:50

What are you have like do you have like group homes like we do?

Speaker 1 56:54

Yes, we have group homes as well. They're through the Department of Developmental Services, and we also have some group homes under the Department of Mental Health. There's a great agency in our area called Advocates, and they cover so many different areas, and they're a phenomenal organization. Yeah. We do have group homes locally. A lot of parents, though, uh some of the parents that I talk to are reluctant to put their child in a group home because they might have some medical fragility, things like that. Yeah. So they prefer to have their child at home. But anyway.

Speaker 57:40

That's what I'm saying. Like if you're in a situation where you could sleep over a couple of nights a week at the group home and they come back home just so they adapt to not being home all the time.

Speaker 2 57:49

Yeah.

Speaker 57:50

To me, that would be like the ideal. I'm lucky because with Chrome, if I wanted to, I could have Philip home anytime I want. I could have him home four days a week if I wanted to. There would be no problem.

Speaker 1 58:01

Oh wow.

Speaker 58:02

Just that because I work and I just I can't do it. It'd be too much for me.

Speaker 1 58:06

And you work full-time, is that correct?

Speaker 58:07

Yeah, I work full-time sometimes, more than full time. Yeah. But otherwise, that would be like for some people, that would be the ideal because they would get the client would get exposed and getting more resources independently, and the parents would get a bit of a break.

Speaker 1 58:21

Oh yes. Absolutely.

Speaker 58:23

Yeah. To me, that's the ideal. Yeah. But it's not easy the situation. Not for anybody.

Speaker 1 58:29

Yeah, I don't think it is easy. One of the populations that is having really the real hard time is the individuals that are really nonverbal, really need cueing and safety, and they have they may elope. They may run to the river or something.

Speaker 58:51

What happened to those over here is they end up my I had a cousin. Don't know exactly what the diagnosis would happen, but she went through a really rough time and she was violent. She ended up being in a locked unit. Yeah. She was happy there. But the doors were locked because she would run or she would get violent or whatever, right? My other cousin said she was happy there because she was structured.

Speaker 1 59:16

Oh, that's good. Yeah.

Speaker 59:20

It's hardcore. You don't have you don't have a choice. Because you go AWOL and they're gonna kill themselves, there's no choice.

Speaker 1 59:27

No, there isn't. There needs to be a level of safety.

Speaker 59:32

That's really fortunately in like in BC, for example, uh, one not just in BC, lots of places. They cut the funding, right? So all the psychiatric patients, there was no more money, so they let them out. And then they become obeless.

Speaker 2 59:47

Oh my god.

Speaker 59:49

There was a lot of that in Vancouver area. They closed the big psychiatric center where people were living.

Speaker 2 59:55

Oh my god.

Speaker 59:56

And then they all ended up on the streets and they couldn't really take care of themselves, and that's what happened. Homeless, drug addict, a lot of them had psychiatric issues, and they were very vulnerable, and lots of people took advantage of them.

Speaker 1 1:00:07

No, that's awful.

Speaker 1:00:09

It is terrible. Yeah.

Speaker 1 1:00:11

One of the things that I do like about our conversation is that idea of taking care of yourself as a that as a caregiver, you have to give to yourself. You can't pour from an empty. And some of the things that I do for self-care, like obviously, I do self-hypnosis. So I put myself into quick trance, relax my body, and it really resets, really helps me to reset. I also do some mindfulness meditation to calm down. I listened to that. You gave me the name of somebody to listen to for sleep. I don't know what his name is, but I listened to it.

Speaker 1:00:53

Yeah, I can tell you that.

unknown 1:00:55

Yeah.

Speaker 1:00:55

And a vegan reset, that's good too.

Speaker 1 1:00:58

Oh, tell me about that.

Speaker 1:01:01

That's the guy I gave you. There's a specific reading sequence where your exhale is going to be longer than your inhale.

Speaker 1 1:01:07

Oh, yes. Yeah.

Speaker 1:01:08

And then resets your vagus nerve.

Speaker 1 1:01:10

That's interesting because that's also in hypnotherapy textbooks from like the 1900s.

Speaker 1:01:17

Yeah.

Speaker 1 1:01:17

So that's really interesting.

Speaker 1:01:19

Yeah, reading it. Yeah, it's huge.

Speaker 1 1:01:21

Wow. And joining a family like support group or something like that. I think that would be something that I think would be helpful. Thank you so much for listening to that episode. It was very emotional. In this episode, we heard from a sibling caregiver whose journey took on a sense of crisis after his parents passed away. Long-term care planning has always been a fear for parents. He introduced us to a neuro-affirming approach, the circle of courage, which is a framework rooted in indigenous wisdom. It's shaped by culturally grounded models of care that really elevate the importance of the individual and their needs. So I really appreciate you listening to the story today. So thank you for listening to Flourishing, Caregiving Autistic Adults Podcast. Together, we'll build a community. Please remember to subscribe to my channel. I have included links to several resources attached to this episode that include the Autism Self-Advocacy Network, the Drextel Autism Institute, in case you would like to learn the latest current statistics on autism, and the Department of Developmental Services Resource, which is an agency to apply for adult supports. We've also included a link to the Mass Ability Program. Thank you so much for joining our caregiving community. Please remember that you are doing the best you can, and we need to advocate for our adult children to safeguard the legislation we fought tooth and nail for the world.