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Handle with Care: Empathy at Work


Aug 31, 2020

- Chrissy Brack

But if you want to know what it's like to be a special needs parent, it's pretty much like this year all the time, in a way, maybe with like less threat of death around every corner. Like there's not like that that like pandemic piece of it. But as far as the amount of hurdles and unknowns and what's going to happen and what's that going to look like and how do I even put anything into place to get through? We'll make a plan for one week and then everything changes the next week. Right. That's pretty typical for us, I would say, for how it's been the entire time from really the time I would say my son was two until now.

 

INTRO

 

Today, we are going to hear from Chrissy Brack about mothering a child on the autism spectrum:  the challenges, the recalibration, the joy, and how it has transformed her as a person.  Chrissy sees herself as an advocate for her son and her voice is just one of the many parents out there walking a similar journey.  But Chrissy, more than anything, told me that she looks forward to handing her son the proverbial mic more and more.  I learned so much in this episode and I am excited to share it with you. 

 

But first, a little bit more about Chrissy.  Chrissy was a year behind me at college and we began to spend time together in Cuba, where we converged during a study abroad program. 

 
- Liesel Mertes

So, Chrissy, you and I met on I think it was a trip to Cuba, like I have memories of you in Havana, which is a really cool way that we met. We met on a trip to Havana.

 

- Chrissy Brack

It's true. That is a true fact of this relationship.

 

Chrissy was a Spanish major, which meant that she knew much more of what was going on than I did as a poly-sci major.  Chrissy is now a music teacher, she runs a small studio in Fishers, Indiana where she teaches violin and the piano, although her work has definitely been affected by the demands of COVID.  She also teaches music, part-time, at a local school. 

 

- Liesel Mertes

So what led you to in your mid 30s teaching music from your Spanish degree?

 

- Chrissy Brack

I came to music almost by an accident. I've been a musician my whole life and I was staying at home with my son. And there was a post in my neighborhood Facebook group at the time where someone asked if there was anybody or if anybody knew anybody who could teach her step daughter piano.

 

Although Chrissy had never formally taught, she answered the ad and begun.  She has been busy ever since, with a long waitlist. 

 

- Chrissy Brack

And I love working for myself and I love getting to pick really how my schedule can fit around my kids and what they need from me.

 

Chrissy is the mother of two boys, Sam and Joe.  Joe is the oldest and he is on the autism spectrum, which asks a particular level of care.  But Joe is much more than a data point on a spectrum of autism. 

 

- Liesel Mertes

what are some of the wonderful things that you delight in about Joe?

 
- Chrissy Brack

One of the best things about Joe is that. He engages with every single person as if they have the same amount of societal weight, intelligence attributes like whatever it is, or like we think of everybody in these boxes of power and structure and hierarchy and like that person smarter than me or, oh, wow, I get way more done than someone else does in a day or like, oh, I need to get to know this person because they can help me further some of my career goals or all this other stuff.

 

- Chrissy Brack

And because he doesn't buy into all the society B.S.. Right. Like it doesn't like, why would he think the mayor is more important than the garbage man or anything else like that? Doesn't make any sense to him and is truly beautiful to witness and to see. And I really love that about him. And he's the kindest human probably in part because of that, because he really wants everyone to feel love and accepted for who they are.

 

Joe is eager and inquisitive, but Chrissy knew, early on, that there was something that wasn’t quite typical about Joe. 

 

 

- Chrissy Brack

So somewhere in there, in those young toddler years and I remember sitting there and just saying that I wasn't really sure what was going on, but it wasn't registering to me as what I would have described as normal, which is not a word I love, but just that something is different and I don't really know why. And I had a doctor after doctor tell me that my child was fine and that he was on track and I had nothing to be concerned about.

 

- Chrissy Brack

And then I kept pushing and pushing until we got to see a specialist. And then when my son was four, we received an autism diagnosis.

 

It was two years of visits to all sorts of specialists before Joe was given a diagnosis.  He was bright, vocal, and loved to play.  

 

- Liesel Mertes

And just because, you know, there might be those listening who are in their own kind of discernment process. You mentioned, you know, this is this is a child who's taught themselves to read. They're very verbal. And yet there were still some lingering behaviors. What, what were those things that you said? Oh, yeah. This specifically is causing me to continue in this process.

 

- Chrissy Brack

What we would probably, as parents just describe as tantrums. But in a way, especially now that I've had what is considered a typical developmental stage with a child who just went through those toddler years and have seen what tantrums look like versus what I experienced. They weren't tantrums to test a boundary, if that makes sense. They were tantrums because like, he could not deal in the same sense that if I kept you up for two days in a row and did not give you food and then asked you to go run a marathon, you would probably start crying.

 

- Chrissy Brack

Right. It was like that. But with things that don't normally cause that kind of reaction in a kid and just the ability to recover from those meltdowns or emotional episodes and the ability to what I describe as a pivot right. To turn the chapter and do something else was just not there as well as some social skills.

 

- Chrissy Brack

My son is actually pretty social and interactive. We had a lot of people who did not believe us when we got our diagnosis.

 

- Chrissy Brack

But it's definitely it's a different set of social engagement. And I would just watch how other kids of the same age would kind of interact and I could just tell it wasn't better or worse. I could just tell the way my kid did. It was a little different and all those things added up.

 

- Liesel Mertes

And for those who are listening and are unfamiliar, tell me about what diagnosis on the autism spectrum entails as far as receiving one or what that means, what it means, like there are some outdated terms and ways in which even just the, the descriptors that continue to grow.

 

- Liesel Mertes

So I'd love to get for you to give an overview of what it.

 

- Liesel Mertes

Yeah. What it means to have that diagnosis.

 

- Chrissy Brack

Yeah. So and I also I should have said this up front, but when we talk about people who are autistic, there are plenty of people who are autistic who are absolutely capable of sharing their experiences and their perspectives and their wisdom. And so I certainly just want to clarify that I am not trying to speak for anyone who is autistic. I'm merely speaking to my experience and hoping to come alongside and be supportive of that as well as, you know, for every person, much like I think most of us, we don't like to be defined by the way things are necessarily supposed to be defined.

 

- Chrissy Brack

And so, I'm going to do my best to describe it. But that's my little disclaimer that how someone who is autistic views this and describes it is correct over whatever I'm about to say. So give them over me. That's what I'm going to tell you. But when we look at something like autism spectrum, don't think of it as a linear thing with a left and a right where we move along this sliding scale and we're trying to somehow move to what we think of as typical or what we in the past would have called normalcy.

 

- Chrissy Brack

That's not it at all. Almost think of it as more like a circle.

 

- Chrissy Brack

Of how our brains work and typical people circles, let's say I'm just making this up, let's say you kind of have your circle and typical people circle goes in rainbow order, you know, and like a color, real fashion. When we talk about autism spectrum, some of those pieces do not line up in that Roy give way. It could be certain parts and certain ways. It could be language. It could be expressive language. It could be social language.

 

- Chrissy Brack

How we talk to one another. It could be sensory. It could be all sorts of different things. So there's really not just one thing that defines what it is. It also does not necessarily define anybody's ability to be competent or capable or intelligent,

 

- Chrissy Brack

but nor, on the flip side, doesn't necessarily define someone as what we think of as a savant. One of the first things people usually tell me when I say I have a son who is autistic is well, you know, like Albert Einstein was probably autistic and like, well, that's a really cute way to reinterpret history.

 

- Chrissy Brack

Like, the truth is that there are lots of families who have a lot of cognitive struggles with their children that get dismissed because there's this assumption that a lot of autistic people are savants and geniuses.

 

- Chrissy Brack

And this other thing. And that's actually I think I could be wrong on the statistic, but I think I once read it was something like less than 10 percent of the autistic population falls into that kind of category. So it really is quite broad.

 

- Chrissy Brack

And we also don't think of it as a functioning factor, because when you think about the term low functioning, which is a term often used to describe people who are autistic versus high functioning, it's basically saying that we reward certain behaviors or certain responses in people as more human or more acceptable.

 

- Chrissy Brack

And that's really just something I have tried to step out of as a mom with a child who is a little bit different that way, because it's first of all, it's like ableist, right? It's kind of a jerk move. And then secondly, just because someone appears to be well functioning in a certain way or in a certain situation doesn't mean it's not painful for them. And I think that's something we have to keep at the forefront of our minds when we talk about any disability.

 

- Chrissy Brack

Is that just because someone can manage a certain thing doesn't mean on the inside there isn't a lot of difficulty or pain to engage that way. Does that kind of help map it out a little?

 

- Liesel Mertes

That really does. You spoke you spoke with a lot of insight that I am just still processing really good on that. I just want to clarify that especially provocative at the end when you were saying, like, just because someone's functioning doesn't mean that they're not on the inside. Is that driving us to really consider, like, even people who are functioning with their own capabilities that people would define as normal? We don't really know the interior story of what that is demanding of them for a given situation.

 

- Chrissy Brack

Yeah, I think that that's huge.

 

- Liesel Mertes

So how does that look for you as a mom in a given moment where you're interacting with your son?

 

- Liesel Mertes

Because it's true. You know, you can speak descriptively of what you've experienced with people on the autism spectrum. You can definitely speak from your own experience. So you're gaining this insight. And when there is a situation where it's like, oh, you know, this is a response that's asking a lot of me, not that you are perfectly, but what are some of the things that you are like reinforcing to yourself with your parenting in that moment?

 

- Chrissy Brack

Well, I wish I had some beautiful book to promote here or some personal thing I could put out to the community. But it's really, first of all, just a day by day thing, which I think is true with most parenting situations, especially in this year. But absolutely, when I think about it, one of the things I try very, very hard to remind myself is that. What my son does is not always a reflection of how well of a job I have done at something, and that is a very difficult thing for me to accept.

 

- Chrissy Brack

I have a pretty type, a perfectionistic Enneagram 3 personality. And so to accept that I cannot get the situation to a place where things can run smoothly all the time is a very hard thing to accept. And then I kind of have this ultimate choice that I could buckle down and fight it out so that I could win or I can look at, OK, so how do we have a loving, supportive environment for all of the members of our family, including myself?

 

- Chrissy Brack

Because I, we all, hit a wall at some point with certain things and can only take so much of anything. And I think we all have found that limit with our children this year, regardless of whether or not they're diagnosed with anything but. Just to think about that and to think and then to rethink, when I talk about the things that are important in my life right now and ideas I'm reinforcing, it's less about how do I get my kid to do X, Y and Z, because that to me is not the end game.

 

- Chrissy Brack

When I look at it all, to me, the bigger prize to be had is how do I stop looking at the world, first of all, as a prize to be won? And secondly, how do I stop looking at these systems as. What should be because just because something is the way it always has been doesn't mean it's good or healthy or should be the norm. And how do I also get these systems to not just accommodate and support people like my kid, but really any type of diversity?

 

- Chrissy Brack

And, and then that pours into my family, too, like we have a rule at family gatherings when we have people over to our house, like in the previous years when we've hosted Christmas or whatever, that our son is allowed to go have a long time in his room any time he wants. There's no apology. There's no need to come sit like your grandma is here from out of town, like you have to come spend time with her. There's none of that because that's an unfair normal, like a social norm that we accept.

 

- Chrissy Brack

Right. That when, like we have family from out of town for the holidays, we all spend as much time together as possible and make that count where to him that time is not any more valuable because it's stressful, like it's not accomplishing anything beneficial for anyone to force him when he's tapped out to sit there. And it just leads to a lot of behaviors that are super detrimental to everyone. So that's an example of when I think about like the system or the situation, like how do we make the world better as opposed to how do I get my kid to be better by the world standard?

 

- Liesel Mertes

Well, and that brings up you know, we're going to talk some about social supports and how people move to or away from you.

 

- Liesel Mertes

In the midst of that, I'm struck that the move with Christmas or family gatherings is potentially flying in the face of a lot of expectation. What was it like to come to the process of being like, we need to do this and now we're telling all of you that we're doing this at home?

 

- Chrissy Brack

And I wish again, I just wish I had some magical answer for that. I think there is something about. I'll say motherhood, because that's my only experience as a parent, but I will say I think there's something in particular about motherhood that rebirth you and to me, when I had my son it I kind of had to let go of this. How do I meet everyone's expectations? Because he gets to have the priority and that can be daunting.

 

- Chrissy Brack

But I had to let go of caring what other people thought for my own sanity because I would lose my mind if I did nothing but try to make as what everyone else considers is acceptable or normal. And then also, I would really not just be doing my kid a disservice, but almost doing the equivalent of abuse with him to make him do something that is just so painful or harmful or not in his nature to do. And when you look at it through that lens, it becomes a little bit easier because you almost don't feel like you have a choice.

 

- Chrissy Brack

And it is hard because then for me, because I'm the grown up right. Like so I get to say that. And when I got a diagnosis for my son, I had this picture of all of these special needs parents in my head, and they all were sort of bathed in this like holy soft glow focus, light of just peace and love and all these things that I am not for.

 

- Liesel Mertes

Maybe not all the time.

 

- Chrissy Brack

I mean, I'm a pretty I mean, and I admit this, I'm a pretty high strung person and I am pretty like high maintenance that way. And so like to be like, oh, I'm just going be one of those moms who doesn't care. Now, what people think of me is definitely not innate to me. But the truth is I have to be the grown up here because he is not the grown up. And that's true for my other kid, too, that I'm going to have to be the one to figure this out because it's on me.

 

- Chrissy Brack

But that doesn't mean it doesn't come with a personal cost and turmoil and grappling because it does. And I think sometimes special needs parents can be hesitant to say that because it makes us sound like horrible human beings. But it is an exhausting job, often without a lot of support or a lot of things are not available to us that are available to a lot of families. And a lot of things that other people can assume, like I can send my kid to school is not something I have ever been able to assume.

 

- Chrissy Brack

So I am sort of like chuckling just a tiny bit. Everybody this year who's saying my kid has to go to school, my kid has to go to school when like, that is not an assumption I've ever gotten to make. Yes, legally, the state has to provide him education. But whether or not that would be in his best interest and I would send him really just depends on what that system looks like. But that is a lot to grapple with.

 

- Chrissy Brack

And you do mourn things, and that doesn't mean I don't love my kid or I want him to be different. It just means I have to fit with that and mourn it for a little bit as I adjust my expectations and understanding of my life.

 

- Liesel Mertes

What are some of your personal practices were like relational support that help you as you are making space for that grief and mourning just in the everyday demands of work like food has to be made and you have to be clothed.

 

- Chrissy Brack

Dinner have to still happen?

 

- Liesel Mertes

Yeah, always.

 

- Chrissy Brack

So a couple of things. I'm part of a couple of online communities. One is called Raising Children Un-Fundamentalist, and it is run by the lovely Cindy Brandt who I've never met or anything like that. She's an author and a like a kind of a public figure for this mantra of fundamentalist parenting and gentle parenting and kind of thinking about things out of the box. And this may sound silly, but honestly, sometimes just reading the posts in there and how people are being so thoughtful and intentional, intentional excuse me about the way they are parenting their kids, like, just gives me kind of that little inspiration that other people are doing the hard things, too.

 

- Chrissy Brack

And it kind of pushes me forward when I feel like so alone or so overwhelmed to know that, just to know that there's really someone else in the world doing it, even if their situation looks nothing like mine can be pretty inspiring. And I do have quite a few friends who, whether it's special needs or their kids, have just gone through things or their lives are just difficult for another reason, who kind of live in that realm of otherness and just having those people who get into text and to reach out and to respond to nonjudgmental on your bad days is really helpful.

 

- Chrissy Brack

And the final piece and to be honest myself, I guess I should say, because if I'm not honest, other people don't know that invitation is there build so much community through that authenticity, even if it's scary to step into or even in calling out some of the things that I have thought were toxic or not OK in an environment can be scary. But then I think, like, if I take that risk on and walk through it, I've paved the way now for everyone else to avoid that toxic environment.

 

- Liesel Mertes

Do you remember in a way that is noteworthy, like some of the first times of putting yourself out there in those vulnerable situations, whether that was expressing need or calling out something that you knew was doing damage.

 

- Chrissy Brack

Oh, I don't know if I have anything off the top of my head. Like, one of the things when my son was little and this is such a small example, was that he was not a kid who could be flexible about his sleep schedule.

 

- Chrissy Brack

And I mean, no one ever gave us a super hard time about it. But he was our first. And I think people thought it was a little bit of a first time mom syndrome. Right. Like, oh, that's cute. You keep your kid on the schedule or whatever. Like by the time you have four kids, like no one's on the schedule. But now, having had my second and seeing how much more flexible he is able to be, it's almost like sometimes I feel like Joe's brain works overtime, both in part because he's a pretty active and brilliant kid, and both in part because he is constantly managing a piece that none of us are usually managing.

 

- Chrissy Brack

And I think for him when he was little or sleep was such an important reset and refresh of that. And he really just could not cope if he didn't get it. And so I spent almost two years of my life. He took a two to three hour nap in the afternoon and I lived and died by that nap time. And I like it's such a small thing. Right.

 

- Chrissy Brack

But like people do sometimes look at you like you're a little nuts when you're like, no, like we are home for nap time and just like, no, I can't do that or no, I won't schedule that appointment then or no, you can't come over and hang out with us or whatever it may be.

 

- Chrissy Brack

And I always tried to do it in a gracious way. But I mean, I know we had family members at times who were probably super annoyed with us that like we just came late to the party or had things at weird times or like I put my kid down in the middle of his birthday party and I did not really care, but just little things like that. You really you just kind of have to put your stake in the ground and say, like, this is something that our family really needs to function and you don't walk this life.

 

- Chrissy Brack

And that's the other thing I usually tell myself when I feel stupid. I don't want to be judged, but when I kind of feel like people think, oh, if you would just and then insert whatever blanket would be, what I tell myself is like if they had to be the one that spent the rest of the day getting objects thrown at their head because their kid was overtired and couldn't self regulate, they would probably go ahead and put their kid down for a nap, too.

 

- Chrissy Brack

If you want to come and live my life, like feel free to tell me how to do it. But unless you're the one cleaning the toilets around here, you don't get to say that.

 

We will come back to the interview in just a moment.  But, I would like to take a second to thank our sponsors.  First, we are sponsored by Fullstack PEO.  COVID-19 has you worrying about a host of things, from hand sanitizer to toilet paper…and those are just the easy ones!  Employee benefits does not have to be one of your headaches.  The people at FullStack help entrepreneurs and small businesses, taking care of your people’s benefits so you can get back to work.  And they really are a top notch crew.  I know a number of the staff personally and the way that they show up for their clients is fantastic.

 

We are also sponsored by Handle with Care Consulting.  This is my company, and we provide so many ways for you grow in the skillset we are discushing, including the the Empathy at Work Certificate program, customized keynotes, and one-on-one coaching.

 

Now, back to the interview with Chrissy…

 

- Liesel Mertes

What would you say are some of the biggest ways that you feel missed by people as you walk this journey of being a mom to someone on the spectrum of autism?

 

- Chrissy Brack

I think. Well. I always am concerned, first of all, that. Because in some situations I have to disclose his diagnosis and not like someone's holding me up against a wall, but like I would not it would not be fair to anyone if I sent him to school and didn't tell anybody he was autistic. Right. Not fair to him. Not fair to the teachers. Right. And so in situations like that, where I feel like I have to disclose his diagnosis, there's always this concern to me that people will see his diagnosis first and not him as a person first, and also that their mind will first go to like, how do I manage things I view as negative as opposed to what does this person have to teach me about the world or the way we look at things, especially socially, that maybe I would not have gotten if I didn't get to interact with them?

 

- Chrissy Brack

Because the truth is, I often say I think Joe has taught me more about life and God and friendship and love than I could have ever thought was possible from one little six year old. And I think if you can come at it like that, like what does this individual have to give us as opposed to, oh, man, how are we going to make it through dealing with some of these difficult things this individual presents us with? I think it's an important perspective change and I think then you get to see my kid for who he really is, which is all I want.

 

- Chrissy Brack

And then for me personally, I think the biggest area I feel most at and not in a huge way, maybe in part because I removed myself from any type of groups or environments in which I would feel this way. But is that that can't you just blank that I already mentioned this idea that if I did the right thing or worked harder or were somehow more competent, that my life would not be so hard.

 

Chrissy Brack

And the truth is, I was literally saying this to a friend. Was it last night or the night before where especially this year? I'm like, it does not even matter how much like no matter what I do, it just is always a disaster. Right? I'm like, whether I do the good things and all the hard work and go above and beyond disaster, I do nothing. I give up, I wallow in self pity disaster. I try to like, get it halfway. Right, not try too hard. Disaster like it just doesn't matter. Right.

 

- Chrissy Brack

It's not like a it's not a cause and effect situation for a lot of special needs. And I think there is this assumption if you just got the right therapy, if you just got the right support, if you had the right thing right. Or if you were in the right school district or if we did this or that, that somehow my life would not look the way it is, as if I have not already thought and tried one million different things to get to the point where I am right now.

 

- Chrissy Brack

I think I don't think there's anything wrong with offering suggestions. I just think sometimes the way it can be done.

 

- Chrissy Brack

And your intention behind suggesting something like should not be to fix my kid or fix my life, but to say like, wow, what kinds of things would really support you, given how some of the challenges you face that really aren't going to go away?

 

- Liesel Mertes

Right. The, the armchair critic that they're with their suggestions. And for those that, you know, think, man, I, I just don't know. I don't know what it's like. Would you open up what a hard day looks like for you as a parent?

 

Yeah, you can be.

 

- Chrissy Brack

And I'm going to be careful. There's more things I could say, but I'm not going to say just because he deserves to be as a human as well. But I mean, it could be everything from.

 

- Chrissy Brack

Like, I mean, I got called like I like my joke, my kid made it maybe two months into kindergarten before I got the call to come pick them up because they needed him to be sent home. And everyone is like, that's not legal. They can't ask you to do that. And I'm like, I think they just didn't know what else to do. I think they were just sort of like, you won't stop and we don't quite know what's going on.

 

- Chrissy Brack

And so, you know, like, that's not a great day when you have to go pick your kid up in the middle of the school day, because no one quite knows what to do with how he's acting that day. And that particular week, he had gotten out of the building and out into like almost the road, I think it was three or four times that week. And so, I mean, that's like I didn't even want to send him back after I went and picked him up.

 

- Chrissy Brack

It wasn't like, well, tomorrow's a new day. Like we're going to start fresh. Right? I was like, no, you're not going to school tomorrow because I'm scared you're going to go run into a four lane street and get hit by a car. So now you have to.

 

- Chrissy Brack

I feel so scary. So then it would be like, OK, well, now my day looks like you have to stay home with me and we have to figure this out. And I have to call a meeting with your teachers and see what's going on and talk to your, you know, our our therapy support team and see if they have suggestions. And now I have to schedule a meeting with eight different people on top of which, you know, I mean, typical kid stuff, right?

 

- Chrissy Brack

Oh, my gosh. You just dumped that bowl of chips everywhere and dumped out your water cup and like, oh, my gosh, did your brother take off his diaper and let you know? I mean, like, all that stuff, like, am I a few weeks ago, I had a day where I did nine loads of laundry back to back and every because none of them could wait because every single item in there have poopy on it.

 

- Chrissy Brack

And I mean, nine is a lot in a day. That's one an hour right where I'm just back to back cleaning up poop. And I was like, could it just be something else today? Guys, I don't know what, like, spilled some orange juice, but like over the poop, like. Yeah.

 

- Chrissy Brack

So yeah, I can look like any number of things or really hoping like when Joe took his NWEA test which is test the school uses to kind of assess where your child's at and where their progress has gone over the last year. I was really like I said, he's a smart kid and I was really hopeful for him that this test would be a way he could show people something about himself that may not be apparent if they're just working on behavior management.

 

- Chrissy Brack

And partway through the test, his iPad stopped working and his internal thought process was, oh, this isn't working. When dad gets home tonight, I'll just tell him my iPad is not working.

 

- Chrissy Brack

So he didn't tell anyone that it wasn't working. And so his score was obviously reflective of you did not take half the test. Right. And that's not the end of the world. Right. But that is a little heartbreaking as a mom to know that he didn't really get the chance to show what he was capable of in a way that I would have liked. And so, like, that's a hard day to.

 

- Liesel Mertes

Yeah, I hear that. Well, and like you mentioned, I mean, so any parent out there right now has had the wrench thrown into the works with covid-19. I imagine that there has been a tremendous and particular disruption within social support services for families like yours. Could you speak a little bit to the added burden that that disruption has been on top of just the now normal crazy Avenal?

 

- Chrissy Brack

Well, this has been to me the greatest gift of this year. And what I've been telling people when they talk to me about that particular subject that in a lot of ways I will not lie. This year is not all that different for me. It is in the sense that my own personal supports and things are not there the way they normally look. And sure, there's more work for all of us. Right. Going to the grocery store is more work than it used to be, that kind of thing.

 

- Chrissy Brack

But if you want to know what it's like to be a special needs parent, it's pretty much like this year all the time, in a way, maybe with like less threat of death around every corner. Like there's not like that that like pandemic piece of it. But as far as the amount of hurdles and unknowns and what's going to happen and what's that going to look like and how do I even put anything into place to get through? Right.

 

- Chrissy Brack

We'll make a plan for one week and then everything changes the next week. Right. That's pretty typical for us, I would say, for how it's been the entire time from really the time I would say my son was two until now. That's like

 

- Chrissy Brack

So yes, it has been challenging and I can share some of our disruptions. But on the same level, I like looking at people and I'm like, oh, well, well. Come to the party, we ended the committee because none of us had time to welcome people anymore, but like grab a cup of coffee and pull up a chair and like, yeah, none of you are going to get through what you thought you were going to get through today.

 

- Liesel Mertes

Is there anything that you would say to this particular moment out of what you've had to be learning along the way as a parent?

 

- Chrissy Brack

I guess if I had to give a piece of advice from what I have done over the last six years that I think is applicable to many people now that maybe had not been in the past, it would be two fold, the first of which is a lot of the things we may think are essential or important are probably a lot less essential or important when it really comes down to it, especially right now. You have to pick and choose with a lot of discernment and it could also be a situation.

 

– Chrissy Brack

And when it's much, much better to start small and add in, as opposed to like trying a very large task or a lot of things and figuring out that it's all going to fall apart. And that is something my kid has definitely taught me because I am an overachiever. And so seeing that and recognizing that we are all limited in a way and being really comfortable with finding those parts of ourselves that we don't like, the parts where we do hit a wall and no, we can't do something we thought we could and and evaluating that before it happens, because that's saying no to things which can be challenging.

 

- Chrissy Brack

And it's also accepting our own weaknesses and limits, which can be challenging depending on your personality. And that is something my son does with a lot of grace and ease and that I've had to help him do as a mom that has made it easier for me to accept to like I know I was at a point and maybe, I don't know, April, where, like, I could not go to the store more than, like, once a week because, like, mentally, it was just super exhausting and everything was so new and terrifying and everything was so different and there were a lot of blinds to wade in and all those things.

 

- Chrissy Brack

And I just had to recognize that was taking an emotional toll on me. And I didn't really want to admit it. I wanted to think I was bigger than being affected by all those things. But it served me a lot better to just say, nope, like let go of that and it's OK. And and so that would kind of be the first thing and then the second thing. And now it's kind of like I lost my train of thought, where was I going with that?

 

- Chrissy Brack

And I think maybe just not don't be afraid. To reinvent what normal is or assume what we thought of as normal is worth getting back to a lot of ways, but don't rush to that conclusion because I would never want to go back to the way I thought of things or saw things prior to really learning what I've learned after receiving a diagnosis for my son. I would never want to go back to thinking about the world that way. I feel that I am a much better human because of him, and I will always have him to thank for that.

 

- Chrissy Brack

It's very humbling in a way, when your five year old with autism can be a better person than you can be because you're caught up in your head with your expectations and demands and all this other stuff, and you realize you're totally missing the point and that he knows it all along. So so just really like look at that bigger picture of what is truly important and the ways we accomplish that. And don't be afraid to get creative or you can let go of things that you think you can't let go of.

 

- Chrissy Brack

And it may just be OK. Yeah.

 

- Liesel Mertes

I always like to ask you spoke in some of the ways in which you've been messed up.

 

- Liesel Mertes

 What have been some of the most important supportive gestures that your community has been able to make that have really meant something to you?

 

- Chrissy Brack

I mean, someone once told me. If you want to love somebody's family and love them, well, feed them and like. The Times, I can't even tell you how many times I have lost so like so much traffic, not by like a factor of two, but by a factor of two hundred, how many times someone has showed up at my door with lunch or dinner or a cup of coffee because, you know, they they heard my son eloped.

 

- Chrissy Brack

And that's like when he escapes, right. That he's eloped and, you know, like I had to call the police and all this other stuff. Right. And that's really, really stressful to go to, whether it's that or just those days where I had like nine loads of laundry and those kinds of things, like really I don't think you can go super wrong with just bringing someone a meal or a treat. And it sounds so superficial, but any of those little tasks that take that energy and focus that you have to now give to something else and just have it cared for is huge.

 

- Chrissy Brack

And also, it's a good reminder to me, like when someone shows up with food for me, that I have to eat, too, and that I have those limits and I have to stop and and do that, even if I feel like we're in the middle of a crisis, because if I don't eat, like, I'm not going to make it through the end of the day. So that would be like some of the best things I've had is just people who showed up at my door with a meal or texted me that it's on its way and it's coming and to not bother cooking.

 

- Chrissy Brack

And I, I think the people who I engage with on a really deep level who are just willing to hear about the hard things and not try to fix them. But also, more than that, it's not always just about the hard thing I've dealt with that day, but also how it impacts the way I have looked at my life. And the world around me can sometimes feel a little bit like an existential crisis. And for the people who have not been afraid to hear how those things have informed my views now, and even if they don't come to that same conclusion, I have space for it and say that my journey is valid and my conclusions are valid because of the life I've lived, and to not try to be corrected and to like, well, yeah, but we know X, Y and Z, right?

 

- Chrissy Brack

And I'm like, I don't know the alphabet anymore. Right. Like it all it taken away.

 

- Chrissy Brack

And so it not just understanding that day to day hardship, but how it impacts us on a bigger level and informs us and not shying away from that, even if you don't truly understand it again, that willingness to learn and be served by something we don't innately have or are experienced with, I think is helpful and humbling task for us all.

 

- Liesel Mertes

Yeah, I hear that. Well, and that that willingness to be in process with you without having to rush you to a conclusion. And that's hard for people. I mean, we want we want those around us to be happy and we want we don't like cognitive dissonance and we stop questioning that stuff. That seems important to me is oftentimes the vibe that we give off instead of being with people in it.

 

MUSICAL TRANSITION

 

Chrissy believes that true inclusion is about honoring and valuing diversity, not just tolerating it…and that this radical move flies in the face of power structures but, ultimately, benefits everyone.  And she wants to see more of this true inclusion everywhere, but especially in the workplace. 

 

- Chrissy Brack

My husband and I are both business owners, so I don't say any of this lightly or not from the perspective that I do not know what that is like, because my husband has employed up to 60 people at one time and has been the end of the line.

 

- Chrissy Brack

And the boss and I work for myself and have to carry that whole load. So I get it. And I'm not just trying to say that like they need to do everything because I get that because I am the they too. But when I think about my child and the world I want for him, I would really hope that when he is an adult, we live in a society that values the things he has to offer because of his diversity and not just say like we hire people with disabilities because we're good people, which like there's a place for that, too, right?

 

- Chrissy Brack

I'm not describing that work at all, but I do think my son and people like him or people who are different from him have so much to bring. And we have to see the value of that and find ways to think about it where when we're usually still stuck on, did they have a firm handshake? And look me in the eyes doesn't actually necessarily say anything about the kind of quality of work they can do or what they can bring to the community at large and to just kind of rework some of those things in our own heads and in our own places where we have influence and make it, you know, to see what they bring to the table as opposed to making them come to the table in a way we think of as acceptable.

 

- Chrissy Brack

And I really hope that for him one day and I think I see positive changes and I'm I am hopeful for that.

 

 

MUSICAL TRANSITION

 

Here are three key take-aways from my conversation with Chrissy:

  • Respect the boundaries of parents living with a child on the autism spectrum.This is just an extension of the basic premise of respecting ALL parents and their boundaries, but it is especially important here.  Chrissy bravely puts the needs of her son first, realizing how central she is to his well-being.  But this sometimes means strong lines in social situations.  Respecting boundaries means that, if they choose to leave a play date early, you DON’T try to cajole them to stay or put on a guilt trip, “Do you really have to go?”  Instead, you say, “It was great to see you!” and leave it at that.
  • Bring food.Food is such an immediate, necessary gesture of care.
  • Be a friend that listens, just listens, without judgment or having to make it better.And, as you listen, remember that it is alight to have limits.  We all do and COVID has thrown us up against them, hard.  Don’t be afraid to look bravely at your limits and to imagine a new normal.
  • This is a sort of bonus point.Chrissy mentioned online communities like Raising Children UnFundamentalist that I have linked in the show notes.  A supportive community matters.

 

OUTRO

 

Raising Children UnFundamentalist with Cindy Wang Brandt:   https://www.facebook.com/groups/665348930273216/