Mothering neuroatypical adults, podcast version === [00:00:00] Intro: The challenge of mothering --- [00:00:44] Suki Wessling: This is your host, Suki Wessling. The Babblery is a show about women's lives, and intrinsic in women's lives, whether cis or trans, single or married, rich or poor, is motherhood. We learn early on that both biology and culture place motherhood at the center of our lives. According to a 2023 CDC report, over 84% of women over 40 had given birth to a biological child. If you add adoption and step parenting to that number, the overwhelming majority of us experience mothering in one way or another. The birth numbers are falling for the millennial generation at least so far. But it's safe to say that mothering in one form or another is central to women's experiences. [00:01:26] Women who are not physically able to conceive and women who choose not to be mothers still live in a world where not being a mother is the less common state for a woman. [00:01:35] Last month, as I was preparing the episode on the challenges and joys of motherhood, I realized that of all the mothers I'd included, a somewhat random assortment of women I'd interviewed for other reasons, none of them had had an unusually challenging parenting experience. Mothering is always a challenge, to be sure, but some children require more of us than others. [00:01:55] So I reached out to my community and was connected to two women, Rebecca and Wendy, who were willing to speak about their experiences. [00:02:02] You'll notice right away that we're not using last names here. Rebecca and Wendy's children are young adults, but their job as mothers still requires the sort of intense engagement that most mothers with young adult children don't experience. I featured a snippet of our conversation last month, and our full conversation explores much more of what it takes from women to raise children with disabilities. [00:02:25] In this case, their disabilities are not visible to the casual observer. And more importantly, their children's special needs have historically been explained by blaming the women who give so much to raise their unusual children. [00:02:38] In the process of discussing Rebecca and Wendy's experiences, we unpack the challenges that many mothers face in a society that is primed to blame the mother. From other parents, to our families, to professionals, other adults often believe that we're doing something wrong when our children challenge the boundaries of behavior that society has constructed around them. [00:02:59] Rebecca: My name is Rebecca and I'm, my child is 22. They were adopted as a baby and into a family where we already had three older children that were my husband's children from his first marriage. And so we had, um, a blended family which had its own challenges in addition to our young child who had significant challenges as well. [00:03:45] Wendy: Hi, I'm Wendy and I also come from a blended family. I have one biological child. She is 24 now and I have two step kids who are also college age. One actually just graduated. [00:04:05] Suki Wessling: I started by asking both women to talk about their early experiences with their children. Here's Wendy. Early childhood and diagnosis --- [00:04:11] Wendy: After my daughter was born, it was pretty much obvious at the very get go. I'm an elementary school teacher, and I have experience in the preschool realm as well, and I knew almost within three months of her birth, that she was struggling significantly, and as she grew, those challenges grew with her. [00:04:37] They were, uh, both physical and, and emotional. The diagnosis, however, wasn't done until I think she was about four or five years old when we started to get actual diagnoses. And those changed over the years, which is incredibly frustrating and confusing. Um, and so, um, at a certain point, I became a single mom and working in the school system where she also was in attendance, I had both the insider view and was very much an outsider as a parent in an IEP. [00:05:24] Suki Wessling: An IEP, an Individualized Education Plan, is developed for children with disabilities to help staff at their schools serve their needs. In the case of a child with behavioral differences, that process can be complex and ever changing. [00:05:38] Wendy: It's really overwhelming. And I did that for many, many years, yeah, all the way up until her high school days when she was placed in residential treatment for two years. It, we've had significant challenges on many levels. [00:05:56] Suki: As a teacher, did you feel like you were prepared for what you found when you were a parent? [00:06:04] Wendy: Interestingly, I think as a young teacher, I had a lot of preconceived notions of parenting in general, and a lot of opinions. And I actually remember thinking about when I saw parents walking out of the classroom with kids who behaved well, for me, inside the four walls of my class, and as soon as they went with the parent, they would fall apart. [00:06:34] And I remember thinking that parent needs some better skills. And, you know, I'd, just finished a lot of training. I had done all kinds of courses on, um, management of, of a classroom. And then all of a sudden, once I was that parent, whose child was behaving within the school day, but falling apart as soon as I came to the door, all of that came back to me and I felt so much shame for judging other people. [00:07:11] And I don't think until you've walked in those shoes, you can't, absolutely cannot have that understanding and the, it's just such a different there are particular reasons for those, those kids falling apart, as well as a different milieu that they're coexisting with their parents versus their teachers and their peers. [00:07:40] So now I never judge anyone for any parenting skills, regardless of what I see. It never happens. Period. [00:07:50] Suki: Can you explain a little bit, what the issues were with your daughter? What was happening with her? [00:07:59] Wendy: Back in the day, she's 24 now, back in the day we didn't have a really good understanding of kids, girls on the spectrum. And so, and her initial symptoms that I was seeing as a baby, a lot of colic. She was unconsolable for hours at a time. Um, a lot of digestive issues and as she went into, so I was teaching in a Montessori private school and the teacher said, oh, you know all these tantrums at age I think she was maybe 18 months old, bring her to our 18 month old program and we will help her, you know, and, and that's that teacher perspective of, Oh, she it's a parent that's new and lacking skills. I was happy to do so, and after that first year, the teacher came to me, and this was a seasoned professional in that age group. She had been teaching for many, many years, and she said, there's something not right here. [00:09:02] So I took my daughter to a special, at, at 18 months, we took her to a special kind of uh, therapy where I was behind a mirror the therapist was watching and giving me feedback through an earpiece and telling me what to say, what to do, and we tried everything. And there was the timeout chair and the holding chair, if she wouldn't do the timeout. And that professional after some time said, Oh no, this is something more. We need you to take her in. And the first diagnosis was, um, a temperament special, from a temperament specialist saying, you know, she's got some temperament issues. And that moved several times. The symptoms, however, never changed. [00:09:50] And that was extreme tantruming. One time she tantrumed for eight hours straight. Um, banging her head, till she caused herself to have a bloody nose. Just uncontrollable emotional overload. And that would come at various places and times, but definitely any kind of social gathering Now I look back and I have more insight to determine what was the triggers, but back then it just felt like it was easier to stay home in isolation out of the, the view of other people who would take note and, and give me lots of grimacing expressions. [00:10:38] Suki: I'd like to move to Rebecca. And again, let's start with the beginning, when did you notice, anything different and what was that experience? [00:10:49] Rebecca: So my child was adopted at a week old and, um, was a beautiful baby and the apple of my eye for, um, the first couple years with the exception of having really extreme sleep issues. So I remember it being just excruciating. My husband worked nights, so I was at home alone with this baby, and I even remember climbing in their crib with them one night thinking that that would help console them. [00:11:21] But so that was kind of the first thing. The sleep stuff was very difficult. And then when they, got into preschool, it became apparent that they didn't play the same as the other kids. And the preschool, teachers, and I began, began having conversations and they had suggested that, and they were, my child was probably three years old at that point, that we have an assessment done by a non profit, we were living in Seattle at the time that, um, did assessments of young children to kind of, you know, kind of suss out whether there was something going on. And they assessed that, yes, there were some kind of behavioral challenges and some social challenges, and they put us on the track with the school district before they went into kindergarten, uh, to get an IEP in place, which we did. [00:12:21] The behaviors at that point were very, uh, volatile, a lot of tantruming kicking, you know, very difficult to get them in a seatbelt in the car without having to like hold them down. Um, you know, it was just a lot of really volatile behavior and then just unusual behavior with other kids just didn't play the same way, was kind of awkward in play situations that made other kids feel uncomfortable. [00:12:51] I think the big thing was the extreme low frustration tolerance that my child had, just could not tolerate anything going wrong. [00:13:00] So with an IEP, we then, um, received a diagnosis by the first psychiatrist who started seeing a PDD NOS. which is , pervasive developmental disorder not otherwise specified. [00:13:15] And then also ADHD and at a very early age, put my child on ADHD meds, which ended up exacerbating problems, particularly when the ADHD meds would wear off and then the meltdowns would be incredibly explosive. Um, just almost not really being able to control at all, banging their head. You know, kicking car seats, just really completely melting down. [00:13:42] So we did you know, begin in those early days with a lot of interventions. We did speech therapy, group speech therapy, social skills therapy. We did OT , regular therapy. You know, it just had been a journey since then. [00:13:59] Suki Wessling: One of the frustrating parts of parenting children with these hidden disabilities is unwrapping their complexities. Here's Wendy. [00:14:06] Wendy: I don't think I've ever heard diagnosis that I'm comfortable with. We did get when she was five that she is high functioning spectrum, autism spectrum. And, um, I think there's a lot of validity to that. So in terms of comfort, yes, I think that fits in many ways. Then there was mood disorder possible bi-, um, bipolar or other types of disorders, I've heard oppositional defiance disorder. I mean the, the, that's always changing. And I think inevitably she's now a young adult and I've learned I have to let her take ownership of that because she has to figure out how to manage. And in essence, I found the diagnosis is only so helpful as for determining what kinds of interventions can be helpful, not so much. I mean, I don't know that any parent really gets comfortable with a label, but I think the sooner we get something that we can hold on to, to help us understand and intervene appropriately and, and get informed about, then it's helpful. Blame the mother --- [00:15:33] [00:15:33] Suki Wessling: You're listening to The Babblery, and we are discussing parenting children with serious behavioral and mental health challenges. Although modern psychologists no longer subscribe to the old idea that behavioral differences like autism are caused by quote unquote cold mothers, mothers often find that their knowledge about their children is discounted by professionals. Here's Rebecca. [00:15:56] Rebecca: We ended up moving to the Santa Cruz area, um, where I grew up. And, um, they went into elementary school here and we had a lot of difficulties with the school in terms of getting support, even though they had an IEP, um, we received incredible pushback that our child's challenges are really beha-, um, parenting issues as opposed to issues related to any disability. [00:16:27] They fought us tooth and nail when we got a, um, autism, diagnosis. basically said that wasn't correct. And then we eventually, the behaviors became so difficult that we knew we had to send our child to residential and, um, the school district would not agree that that was necessary and we ended up having to go to court to prove that our child needed this treatment, needed to be in a, an environment where people understood them and could work with them and educate them in a way that the public school wasn't able to. So our child was, um, in residential therapeutic boarding schools and treatment for between three and four years. [00:17:18] Um, there was a period in which they came home for a year and ended up having to go back due to aberrant behaviors and explosive behaviors. And eventually our child has evolved into living in a young adult program for a year where they tried to develop some skills to live as a young adult. Those were not really happening in the way that we had hoped they would develop and I was able to get my child on state disability in Utah where he had been living for, in programs and now lives in a group home, um, and is doing okay, not thriving, but I would say doing okay, you know, and is safe, which was one of our real goals was to keep our child safe. [00:18:02] Wendy: I just stayed home with her a lot and we, we got a lot of interventions, right, when she was five, I think we got in home therapy and the therapist told me that I, I myself was not expressing anger and that was maybe causing her to have problems. [00:18:22] And that was a common theme throughout her childhood. It was always, there were always professionals at the table looking to point the finger at me and what I was causing. And in effect, you know, she's 24 now and I can in earnest claim that she, this is not my doing. That it genetics, I'm sure some environmental elements to that as well, but we don't cause these things in our kids. [00:18:56] It, it evolves and we have input and influence, but we don't create and we don't fix. We are not in control. [00:19:14] Suki Wessling: We're speaking with Rebecca and Wendy, whose children received behavioral and mental health diagnoses early in life. [00:19:20] We've been focusing on their struggle to get diagnoses and appropriate care. Next we'll move from the early challenges to the joyous growth and understanding that come from walking a difficult parenting path. [00:19:31] Segment 2: Joy despite the challenges --- [00:19:32] [00:20:11] Suki Wessling: I'm your host, Suki Wessling. When families are faced with children who break the mold, who don't fit easily into what is expected of them, it's often a woman, their mother, or in some cases another relative or teacher, who bears the burden of helping them find their way. And our society doesn't make that way easy to find. [00:20:31] I was particularly interested in talking to my guests, Rebecca and Wendy, because I, too, mothered a child whose issues seemed, in early childhood, undiagnosable. And I remember, as they described earlier, feeling blamed for the explosive behavioral issues that my husband and I knew we hadn't caused. [00:20:49] But there's more to mothering than putting out fires. Even the children who cause us the most difficulty are wonders. They bring us joy and push us into intense periods of growth and self exploration. I asked my guests to start from a place of joy before we get back into the nitty gritty of high stakes mothering. [00:21:08] Here's Rebecca. [00:21:13] Rebecca: It reminds me of how much I was in love with that baby. I - they were the joy of my life. I mean, I had never been so happy to have that little person in my life, you know? I just remember looking at them and playing with them and being on the floor. I mean, I had not had my own child before, and it gave me joy in a way that I had never had in my life. [00:21:42] You know? I was so in love. I think one of the things that became really hard is when that realization when that joy is turned to some sadness that this child is not going to be who you thought they were going to be, that there is grief in, you know, the loss of what you thought you were going to experience. But yet I still can look back at those days and remember with, you know, a great smile that those moments were real and really important to me although the, the, um, path has been really challenging ever since. [00:22:25] Suki: Almost every mother I've ever talked to, no matter how hard it was to get the baby into their lives, talks about that, not being prepared joy. [00:22:35] Rebecca: Yeah. [00:22:36] Suki: Wendy? [00:22:37] Wendy: Well, for me, because I was a single mom, and her biological father left the picture completely, it gave me, the two of us, a real sense of, uh, camaraderie and an incredible strength to our relationship. It came to, I felt such a connection with her that I could, I could speak on her behalf and, and what we later found out that she had a lot of expressive language issues, which perhaps contributed to the meltdowns. [00:23:18] Um, but we didn't know that at the time. And so when we'd go to appointments or something would come up, I could almost step into her shoes and identify. I would ask some clarifying questions and I would know, Oh, okay. I bet she was thinking this and I could ask her and she oh yes yes yes and um and so we had a great deal of enmeshment in our relationship and we we were very happy together. [00:23:49] When it was just the two of us, we did so many great things together, both creatively and, um, and otherwise, just, we were always together. And she's really funny, has such a great sense of humor. And I think, part of her, her challenge is that disability enables her to view the world in a way that most of us don't see. [00:24:20] And when she will make statements, she herself thinks it's really funny. So we've had tremendous, as a family unit, she was the one that would bring us together, and then she would make these statements. We'd all be at the table, and it would be silent, like a really difficult moment, and she would just make that elephant in the room very identifiable, just in plain terms, just outright, boom, here's how it is. [00:24:50] And everybody would just look at each other and I mean, just crack up. And so, um, yeah, she's, she's very playful and funny and fun to be around. And, and as Rebecca noted, those times could change on a dime. And so there, as she got older and became stronger, being alone with her, was sometimes frightening. So it's, it's that double edged sword of you love them deeply and you have this really special connection because you, in a way, I felt like I was her bridge to the rest of the world. [00:25:35] And I've later understood that that was not necessarily a good thing. You know, that enmeshment and that dependency, um, spurred a lot of other challenges in our relationship for both of us personally, and for us still today in our relationship. It's like, how do you see someone separate from yourself and, and accept them for their challenges and all of those gifts that they also have because they come together? They're embedded together. She probably wouldn't have the insights and the funniness and her strengths today if she didn't have all of those challenges to overcome. And so, uh, that's where I find myself today of just reminding myself, don't step in, don't give an opinion, don't ask questions, let her be who she is 100 percent solely as an independent individual. And I think, you know, Rebecca and I've been in a mom's group for many years now. And so we've watched all of us moms grow and evolve. We've sat through many sessions of tears and laughter. [00:26:50] And I think it's really interesting to me to see all of us being moms of young adults now coming to this. We used to always say, every single one of us, 'yeah, but my kid, is special. My kid has extraordinary challenges, so therefore I need to provide safety, security, isolation,' whatever that story, that narrative in our minds was. It was this sense of, if I'm not there, something bad could happen. But in essence, because of that narrative, our actions were creating another narrative for our children, which was, 'I'm not capable. I'm not able to do these things without my mom. I have to second guess every choice I make.' You know, it just, and those things in the moment, we never thought about that. [00:27:54] All we could think of was safety and helping and the good elements of that, that structure. So we've all come to that conclusion in our separate times because everybody has to grow and, and learn to accept and understand their own relationships and their own kids in their own way. Growing and learning together --- [00:28:16] Suki Wessling: You are listening to the Babblery and we're examining the experience of what we might call extreme parenting, when a child comes into our lives and demands more from us than we ever knew we could give. I wanted to break in here to offer a bit of perspective. [00:28:34] I think that the soul searching, and especially the wish for a do over, is an intrinsic part of this experience. When I look back at my own experience, there are lots of moments I'm proud of. As a team, my husband and I pushed back against professionals whose suggested remedies would have been so harmful. [00:28:51] But I also came out of this understanding why we moms so often wish for a do over. Kids are so complex, and our children, who do demand so much of us, also teach us so much. Wendy's not alone in perhaps wishing she'd done things a bit differently, and next Rebecca elaborates on her own experience. [00:29:14] Rebecca: Our children, even though they have these incredible challenges, they have these very unique personalities, you know, gifts, whatever it may be. And we're talking about what were the things that made me, you know, appreciate my child so much was, um, even being on the autism spectrum from a very young age had a huge facility with language and would say the most incredible things and had the most unusual and incredible interests. I mean, it was very, you know, it's offered a different kind of rich life with a child. that I might not have otherwise been exposed to. [00:29:58] So I just want to kind of offer that as despite the difficulty, there have been some fascinating moments throughout our life together. And then I think the point about enmeshment, I mean, I think as a mother, there is such a tendency to want to scoop up that child and keep them safe and keep them, you know, find everything you can to make their way in the world easier, given what we know they're going through. [00:30:33] And it creates this bond that I think in some ways, as Wendy was saying, very hard to break because you are so used to being really like their operating system in some ways that, you know, you're very worried that they're not going to make it in the world or make it in class or make it in whatever situation it is and i feel that I'm - Wendy's ahead of me right now in being able to back off of that. I'm still really struggling with being able to understand that I need to let go for my child to gain more independence. Right. And it's very hard to do because you have been in, you know, overdrive trying to, you know, make sure that their life is, You're doing everything you can to figure out how to help them. [00:31:26] And to finally be able to go, boy, I'm not going to help them if I keep being on top of them. I'm going through that now, really kind of peeling back. And, when my child calls me and says, I need a ride somewhere and I'm sitting here in California and they're in Utah, and I start jumping in, well, let me figure out how you could, I can help you. [00:31:46] I need to say no. This is a 22 year old who needs to figure out how to get their own ride, right? So there are these things that it's just so, such a habit, it's habitual to, to want to jump in and help and I'm working on that. [00:32:01] Wendy: But what I constantly ebb and flow through, because it still comes up over and over, is this grieving of, Oh, it's not fixed. We are not going to fix whatever is going on and and allow myself to rather than for the longest time I would feel the anxiety and the emotions surfacing of that that grief and I would funnel that into more research, more, more this, more that. [00:32:42] And what I realized as she's getting older is I need, sometimes that's okay to do. It's healthy, but it's also important to just sit in those feelings and feel the grief and feel the anxiety and the worry and to get to the other side of it because those underlying sort of the, um, the undertow. In that ocean that we, we float in with our kids, that undertow of angst and worry and fear, that has effect on our relationships. [00:33:24] So what I try to do now, and I wish I would have done years ago, was to sit in that, name them, write them down, talk to a therapist or a friend about them, and then come to a place of holding up the light for that person. And instead of saying, what if this disaster happens, start harboring or nurturing the thought of what if these good things happen? And, and reflecting that to our kids, because what we don't realize is what's going on inside of us, our kids can feel that on some level. They do. [00:34:07] Rebecca: I don't know if I can speak for you, Wendy, but I think we both, um, suffer from, you know, extreme anxiety and we both have the drive to fix things and the wherewithal to go figure out how to fix things and to, you know, and I think that drive is attached to our anxiety so that we're constantly, you know, in this situation of, you know, we've got to keep the disaster from happening. The only way we won't be anxious about the pending disasters if we're on the move trying to figure out how to fix it. So it's a very, very difficult place to be and I think we can only see these, some of these things in retrospect, you know, looking back, having done the work personally. [00:34:54] Suki Wessling: Parenting kids with emotional and mental health differences puts a huge burden on the adult. Our parenting culture tells us that our children's failures are our failures and professionals are still likely to blame 'overbearing mothers' for their children's mental health challenges. [00:35:17] Over years of struggling as a parent, moms like Rebecca realize that for all the struggles that their kids go through, that is simply the life they were born into. But for the adults, their own failure is nothing they ever could have been prepared for. [00:35:38] Rebecca: Our kids failed so many times over and over and I think you know, maybe sometimes it's not even as hard for them as it is for us, the feeling of, you know, kind of projecting that feeling of how hard it must be for them. [00:35:54] Whereas, you know, we've just experienced that over and over and I think that tendency to try to protect them even into young adulthood from another failure is just looming over me and learning how not to go there. Like Wendy was saying, be able to sit in a little bit, be able to kind of take a moment, take a breath before you just kind of start running, you know, to figure out how to, to, to prevent that terrible failure from happening. But, um, it's excruciating. I mean, I think we are, we have PTSD from what we've been through. Um, and I don't think, I think one of the values of the group that Wendy described that we have been in is we have this small group of women who understand, you know, I mean, from the outside, we've had many friends and caring family who've had lots of suggestions for what we could do, but not being in it and not feeling the pain and the suffering that, you know, this experience is, without having a group of, of women like we've had, it would have been so hard to be able to cope, And, you know, that shared experience means everything. [00:37:08] Suki Wessling: Wendy and Rebecca were lucky to find the support they needed, and that support, to a certain extent, is what allowed them to be able to look back at this experience with such understanding. Next, we'll speak about the lessons they learned personally. How the stigma against mental illness continues to haunt families and hamper their ability to help their children. [00:37:41] And finally, how Rebecca and Wendy's children, now adults, are learning to navigate their lives independently. Segment 3: What we learn from parenting neuroatypical children --- [00:38:29] Suki Wessling: I'm your host, Suki Wessling. You've been listening to two moms who have recently graduated from what could be termed extreme parenting, raising children whose disabilities are hard to diagnose and treat, and which are often invisible to others around us. In this last segment of our talk, we move to hearing what Rebecca and Wendy have learned from the experience, their view of the stigma against mental illness that dogged them at every turn, and what they hope for their children, who are now young adults. We start with Wendy, who tries to come to terms with the choices she needed to make and how they affect her and her child. [00:39:05] Wendy: One of the training I did once, um, was incredibly helpful when the person said, you are no longer a parent, you are a staff of a young adult. And so he, he said, when something happens, you need to assess where your kid is, And it was like red, yellow, or green zone emotionally. And then you change whatever you're, you were planning. Try to get them back into that safe, healthy zone. [00:39:40] And the other thing really important step was to step back for a second. If you're triggered, identify what you're feeling and set that aside and get into staff shoes. And when you're a staff, you can evaluate, or assess the situation. You can hear more clearly what your child is trying to say with their behavior and with their, their words, and therefore you can respond rather than react. [00:40:10] And it sounds really easy. It's incredibly hard and takes a a long time to perfect. I'm still working on it. But just the knowledge of that helps me get back into staff mode if I can. Sometimes I can't and I just have to step away. [00:40:25] Suki Wessling: Rebecca weighed in on the importance of the support group where they met. [00:40:29] Rebecca: One of the reasons that for me, and I think for many parents with challenging kids, that that's important is that, your kid's going to a school with a lot of neurotypical kids. [00:40:42] And, you know, throughout my child's childhood, I would find my child being the one that didn't want to be invited to the birthday party. That, you know, 'oh, that kid's a problem. We don't want to be around them.' And then I found myself even having had like a group of families kind of in the preschool arena, early kindergarten, maybe within a year or two, they were just, pulling away. [00:41:10] And so I think you're very alone in many ways, um, without people understanding what you're going through. And then the pain of not having support of friends or other, you know, and feeling like, God, I don't belong anywhere, you know, because you're thinking about childhood as being something that's full and rich and full of relationships. [00:41:32] Then it suddenly becomes an extremely lonely situation. That's extremely hard. And then the other thing, you know, Wendy was a single parent for a part of this, you know, raising her daughter. Being married is a whole other animal because if you and your partner aren't aligned and you don't see eye to eye and you look at things differently, it adds a whole other layer of potential chaos, anxiety, anger, challenge, um, which is something that I went through and, um, has taken a long time to come to terms with. [00:42:13] We, unlike many parents in our situation, ended up staying together, um, but it has been far from easy. Um, it just, it. You know, I think there was a lot of triangulation as well with our child. So it becomes, there's a lot of complexity, not just in, you know, raising the child and getting the resources, but in the other aspects of your life, which kind of go, kind of just blow up in ways you don't anticipate. Isolation and stigmatization --- [00:42:44] Suki Wessling: A common experience of parents who children have to be hospitalized for mental health reasons is another sort of isolation. Wendy explains. [00:42:52] Wendy: I was recently talking to a friend about, oh yeah, you know, she was volunteering to help these families whose kids were in, had severe illnesses and how they created baskets for the families and they had multiple resources made available to them while their child was in the hospital and getting help and whatnot. [00:43:17] And I said, you know, when your child goes into the ER, basically you are, for a mental health crisis, you are separated from your child and treated as if you are maybe a culprit in the circumstance. You get very little to no information. They get taken away. You don't know where they are, what's going on. [00:43:41] You're given a time slot of maybe an hour and you have to walk through doors as if it's a prison. You have to be, you know, nothing can be on you. They check you. It's, it's an unbelievable, surreal experience. You go in, you see your child. You don't know what's going on. You leave them there. And, and then all of a sudden they invite you for a meeting for maybe an hour and they give you a very short synopsis of what was done in the maybe five days the child was there. [00:44:18] And they send them home. And, and that's supposed to be helpful. If anything, that's even worsening the circumstances. And then you pick up, you try to pick up from where you left off. And meanwhile, if you say anything to any of your friends, Oh, there was a hospitalization, utter silence, because no one knows how to respond to you. [00:44:41] And you have just faced like this incredible, incredibly stressful very overwhelming experience and no one, there's no extra support. There's no gift basket or, or whatever you call it. It's not a gift basket. It's a help. You know what I mean? Some kind of basket to help you and, and some numbers of people to call or a social worker who sits with you. [00:45:12] None of that happens [00:45:13] Growing up and letting go --- [00:45:16] Suki Wessling: The isolation and marginalization of parents starts when the children are young. More than one parent has told me about the simple pain of not being invited to birthday parties. This is hard for the child and doubly hard for the parent who is trying to forge relationships. Particularly for moms who are likely to find their support in parent groups that form at preschools and schools, the isolation of their child means the isolation of the adult. [00:45:42] And then as the child grows, there is a different sort of isolation. I asked the two moms how the transition to adulthood has gone for them and their children. Here's Wendy. [00:45:56] Wendy: My child has gone through a lot in the last few years. We initially weren't sure if she would ever be able to live on her own and so we tried a young adult program and that was really challenging and disappointing. So then we hired a one on one mentor that worked with her for a couple of years, and that was really successful. [00:46:23] We were really in a very unique situation. And with my teacher background, I was able to create this whole system that just really worked until it didn't. Because your kids grow and they change and their needs change. And, oh darn, that safety net was no longer going to work. And so, right now today, I am super proud. [00:46:49] Lots of successes to be, celebrating. She lives independently. She has a roommate that she absolutely adores. She works as a vet tech and is, um, So well suited for that. she's learning to manage money. That's a challenge still learning how to function in the world independently, making appointments, going to appointments, medical health care stuff is, is a challenge. [00:47:21] And I mean, it's quite a ride to be on. And there are some days I think let me off this roller coaster, but all in all it's really exciting and, and it's really scary at the same time. [00:47:37] Suki: That's wonderful. [00:47:39] Rebecca: Yeah, I think, um, my child is not quite there yet. I think I've really only come to realize how much, I may have been doing to keep them from growing into their own and taking more risks and becoming more independent. And I'm, that's my work right now is to really figure out how to encourage that independence. [00:48:07] My child is living, as I said earlier, in a group home where the staffing is pretty marginal, and I have worked to build in some other things like a mentor to do something with them a couple of days a week. And I'm just kind of encouraging opportunities to have engagement outside of their room and being on a computer, which has been the mode for the last two years. [00:48:32] And I'm seeing a little bit of change there and a willingness to engage with others, which had not been happening. So that's a positive thing. So I'm seeing very small steps. I'm seeing the engagement with the mentors being very positive. a willingness to actually experiment with making some meals. [00:48:54] So there's a ways to go. And I think, I think part of it has to do with me really kind of backing off and encouraging exploration and independence on their own. Where it's going to go, I don't know. Um, my, my wish would be for them to become much more independent, to find community, to find some sort of job, whether it's, you know, part time or, or a volunteer job to really have, find a place in the world. [00:49:26] And my fear is that, you know, my child will be stuck in four walls of a group home and not be able to enjoy the greater world. Um, but I think I just, I, I just pray that that'll, that'll happen, that they'll find more than they have right now. [00:49:48] Suki Wessling: Raising a child with any disability is a different experience than raising a typically developing child. At the same time as adjusting expectations, parents have to convey the belief to their children that they can do anything they set their minds to. But we also have to celebrate the small steps that may be big achievements for our children. [00:50:06] I want to reiterate that any self critical reflection that moms may do is natural, but it's not necessarily deserved. They have taken on the hardest job, a job that some parents simply step away from, and they have done their best for their children. Wendy and Rebecca view steps that their children have taken very differently than they would if they had typically developing children, knowing that what we take for granted with most kids is a huge success for their kids. [00:50:32] Wendy: In our mom's group, we're all coming to terms with what their limitations are and what they're, actually finding out for themselves. And so whether it be within the four walls of a bedroom and that's their life or whether they're out in the world and collapsing here and there because they're taking on too much and, and it's risky behavior at times, whatever that Identity is coming to terms with acceptance of whatever risky behavior or risks they're willing to take. [00:51:11] I guess we have to learn to celebrate that they are living their lives. She's taken a lot of risks and she's gotten into some pretty scary situations, but you know, I, I choose to try as much as I can to stay in that place of, of positive thinking, gratitude, and get out of preservation. They have to live their lives. It's not about how long they live or whether, how successful they are. It's about the fact that they're in it. This is their lives every day and whether it be moments of joy or grief, and we see both of those all the time, that is their life. And just be there with them. [00:52:04] That's the gift I can give to her now, is to be willing and able to sit calmly without my emotions getting in the way. And just be a partner there to say, I see you, I see what you're going through, and I'm really sorry. Or, or maybe not I'm sorry, just I see it. What can I do? Do you need anything? And just end of story. [00:52:29] Rebecca: It occurs to me that, you know, one of the terms that we used throughout their childhood and how you support a child with special needs is scaffolding, right? And I think that we have spent years and years of creating this scaffolding. It's almost like holding up a building and you're building it right. [00:52:47] And now is the time when we're taking the scaffolding down, you know, and I feel that. That's my work, and it's hard, but it has to be done so that they can go on and thrive as an independent person. And, um, I just had that image of like taking all those bars down around that building and it's going to stand on its own, right? [00:53:12] And so, that's, you know, where we're going. And I, I, I am hopeful, with a little bit of trepidation. but I do have to lean into that, that hope. The side of hope, you know, that we have laid a foundation and we've done the best we could, which is hard to get your arms around, that we've done the best we could, because we always doubt ourselves. [00:53:34] Wendy: When we create these expectations based on what other kids of the same age are doing and what other families are experiencing around us, then we're looking at failure. Then we're disappointing ourselves. Then we're staying in that place of fear and worry and concern. I think when we can get to a place of changing that up, where we let our kids determine what the expectations are, and we listen to them, and let them get behind the wheel, and start to experience it in a different way, where it's, it's more like, What is she wanting to accomplish and how is she doing it? [00:54:15] And look, she's doing it, or, you know, she's struggling to do it, or just creating that really intent, uh, intentional, uh, thinking around it so that we keep ourselves from going down the drain with all the fear and the worry, because in the end, we're not in control of what's happening anyways. And I just try to remind myself all the time to let it go and just be on the ride and try to enjoy the moments. [00:54:51] [00:54:58] Suki Wessling: Thanks to Rebecca and Wendy for sharing their experiences and the wisdom they've gained. During this show, they mentioned the support that they got from NAMI. That's the National Alliance on Mental Illness, which has local chapters in many areas. Learn more at N A M I dot org. The gorgeous music, Berceuse No. 1, courtesy of the Petrucci Music Library, is by a contemporary Australian composer named Dorothea Baker. I could find no further information about her, but if you're out there, Dorothea, thank you for sharing your music with us. [00:55:34] And thanks for listening. END --- [00:55:45]