Ep. 114: Grieving Our Children’s Intellectual Disabilities + Facing Our Internalized Ableism with Marci Dunning

Episode Transcript

Marci Dunning  00:00

I believe that Freya is Freya. Her little genes were always the way they were, and she always was going to be who she is. But society doesn't believe that.

 

Madeline Cheney  00:17

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today, we had a conversation with one of my favorite Instagram friends, Marci Dunning. All about the grief that she's experienced about her daughter's intellectual disabilities, and the grief she continues to experience, as well as just all the facets of that.  I know so many of you also have children with intellectual disabilities, on top of their other disabilities or medical complexities, and I really hope that this episode really resonates with you. And even though we all come from different backgrounds, and process things in our own unique ways, and you may not relate with every single thing that Marci says, I just really hope that you feel that you are not alone. 

 

This topic was a bit daunting for me to tackle, and I was so grateful that Marci was willing to tackle it with me. So let me tell you a little bit more about her. As I mentioned, Marci is one of my favorite Instagram friends, and we were laughing about how I had no idea that her name was "Marci" until recently. That's the funny thing about social media, I guess.

 

Her account is @freyasluckyarm, so if you don't already give her follow, go do that. She's super awesome. There's a link in the show notes to do that. Marci lives in southern Utah with her husband and four kids. Liam who is ten, Fiona who is eight, Jessie who is five, and our star of today's episode, Freya, who is three. Marci was a nurse's assistant for 15 years and stepped down from that to care for Freya, and to manage all the appointments, which I'm sure each of you understand. Marci is a lover of Diet Coke and gardening.  All right, let's dive in. Hi Marci, welcome to the show!

 

Marci Dunning  01:38

Thank you. I'm so excited to be here.

 

Madeline Cheney  02:16

I'm really excited to chat with you. I loved being Instagram friends with you, it's so great. I think we have some great conversations about more controversial, or, I don't know, I just feel like you're a very honest person. And so, I'm really excited to tackle this topic with you. I think it's an important one to just be really honest about and not try to sugarcoat things or sidestep things, and just kind of say things how they are and have it's just been a really safe place for parents to, you know, feel seen and heard, by hearing your thoughts and your story on this. So, I would love to start out with Freya's beginning, and kind of what it was like to learn of her diagnosis, and to learn that she would likely have intellectual disabilities.

 

Marci Dunning  03:03

Yes. So, Freya, at our anatomy ultrasound, we found out she would have a limb difference. My husband and I cried for about five minutes, and then we thought, oh, we'll figure it out. No big deal. We can figure out this limb difference, there's a great community, it'll be fine.  So, fast forward about another week, we went to the maternal fetal medicine specialists for an in-depth scan to make sure that everything else was looking okay. And they were the first to mention like, "Hey, she's small, she has this limb difference. More than likely, you're looking at some type of syndrome."

 

And I, you know, the five stages of grief - I like to think of it like you're on a train. And each stage is like a stop, right? Because then you can go back and visit. So, the first stage is denial. I was right in that train. I looked out the window, and I was like, oh, I like this place! And I stayed there for a year. I just was like, nope, not my kid. Nothing's wrong. We have this limb difference, but we're good. Every doctor would say, "Okay, but maybe you should be prepared for this," and I was like, no! 

 

And then she was born at 35 weeks, so a little bit early, but not too early. And she was visited by the geneticists in the NICU. The geneticists took, like, five minutes to look at her, and then said, "I believe your daughter has Cornelia de Lange syndrome." And she immediately said, "No, don't google it." You know, like they always say. So, what did I do? I went and googled it.

 

Madeline Cheney  04:53

That's kind of a scary thing to say too because you're thinking, well, then how bad is it? Like, what is there you're trying to hide for me?

 

Marci Dunning  04:59

Yes. How horrible is this gonna be that you're saying don't research it? So, I did, I went and researched it. I took one look at these kids and again thought, nope, not my kid. No, not my child, not my life. That's too hard. I'm not I can't do it. And so, I looked at the doctor straight in her face the next time she came to see me, and I was like, "that's not what my daughter has. You can do the test, and it's gonna say, that's not what she has." And, come to find out, that is what the test said. So then that kind of just fed into my denial.

 

Madeline Cheney  05:38

So it came back negative?

 

Marci Dunning  05:38

It came back negative. And the doctor said, "this can come back negative, it can be in mosaic form, as in it's not found in her blood, but it is found in her skin cells and saliva cells and things like that, but it's just not found in her blood." But I was like, "No, she doesn't have this." So, I then went on my journey to find what I thought she had. And in the research, I looked, and anytime it said, 'cognitive delay,' or 'intellectual disability,' I crossed it off the list like nope, that's not what she has.  Because in my head, cognitive delay and intellectual disability was lack of personality, lack of any type of function. Basically, you know, sitting in a corner, not talking, not interacting. That was what I thought cognitive delay and intellectual disability was.

 

And that wasn't Freya. Freya was smiling, she was rolling over. She was doing all the things just a little bit behind where she should be, but she still was doing everything. So, I just thought, no, that can't be my daughter. I'm seeing her. She is social. She has a sense of humor.  There was this one point when my husband had an empty two-liter bottle and was kind of bopping my kids on the head with it and it was making a funny noise. And Freya was laughing, she was busting a gut. And I looked at her and I thought, okay, we'll be okay. She has a sense of humor. We're gonna get through this just fine. And that was kind of right in the moment that I was starting toward acceptance; that, okay, maybe she has a syndrome, but just knowing that she had a sense of humor in this life, we were going to be okay.

 

Madeline Cheney  07:47

Because to you, that means she doesn't have an intellectual disability.

 

Marci Dunning  07:51

Yes, exactly. Wow.

 

Madeline Cheney  07:55

So, when did you find out that she really did have CdLS?

 

Marci Dunning  07:59

At about nine months, we got a second opinion up at Primary Children's Hospital, which is our children's hospital in the state. And a whole team of geneticists came in - there were four different geneticists. And they came in and they said, "We've looked at your daughter, we've looked at her objectively. She has Cornelia de Lange Syndrome. We can't tell you why it's not showing up in the bloodwork, but she has Cornelia de Lange syndrome."

 

And so, we then did a cheek swab to see if it was a mosaic form, because that takes different cells than blood cells. And it was negative. Again. And so, I still hadn't fully accepted it at that point. Because since we got to negative tests, again, and again, I just thought, okay, but what if it's something different? And then finally, when she was two, we did a whole exome sequencing to kind of see if it was anything. The sequencing tests their blood, and it tests for every known disease-causing gene change. And it came back with the most common form of CdLS, but it was on a splice site of the gene, which is really rare, and Freya is the only known person to have this splice site gene mutation on this gene. So, very, very rare, and it just was hiding for us, but my gosh, it was there the whole time.

 

Madeline Cheney  09:36

Wow. So, what was that like? To be like, holy cow, this really is it.

 

Marci Dunning  09:41

It was both a relief and a gut punch, all in one blow. Because we finally knew. But also, I had built a community around myself with CdLS parents, and I was really afraid that that wasn't what she had, and this community was going to be taken away from me. But also, knowing that now, she for sure will have an intellectual disability, she will be severely delayed her whole life. With CdLS, they have global delays, so they are delayed in growth, in feeding, in cognitive function and physical function; every aspect of their life is touched by CdLS. So, knowing what we were in for, for lack of a better term, was really, really sad. And we really had to go through that grief process all over again, because we knew for sure now, this is what it is, and this is what we're dealing with.

 

Madeline Cheney  10:53

Wow. So, looking back at your initial perception of what intellectual disability is, as in thinking like, well, there's no way she has that, because she's laughing, she has a personality, did that kind of rewrite for you? Like, I know that there's an evolution of how you've perceived intellectual disabilities. Was that kind of the first step and like kind of relearning what that really is? When you're like, okay, so Freya is both intellectually disabled, and she has a heck of a personality. Like, did that converge for you, did that evolve anything?

 

Marci Dunning  11:25

It was the beginning, I would say.  The more I live with Freya, the more I learn. And the more I recognize when I see other people with intellectual disabilities - the more I recognize their personalities, because I see a little bit of my daughter in them. I think it was just the very first step in changing my whole concept of what this was.

 

Madeline Cheney  11:52

Yeah. So, I think a lot of times, I mean, with the grief in finding out that your child is intellectually disabled, I know I can't 100% relate; although, in a lot of ways, I can totally imagine it because Kimball had a prenatal diagnosis of Down Syndrome. And so, I really grieved that, for the time that we thought that that was the case. And then even now, we're not 100% sure that he doesn't have some intellectual disabilities.  But I think there is just such a huge ball of grief for a lot of reasons. And I think, you know, part of that is just the way that in society, we value intellect, and we value being smart, and especially being exceptionally smart.

 

And I know you've mentioned that, with your other three children, you really did find a lot of pride in the notion of "my kids are smart." And that's almost a part of your identity, right? It's like, I have some smart kids, and being smart is really valuable.  And I think it's just so interesting, too, because I'm like, "Oh, don't call my daughter pretty, call her smart." I don't know. You know what I mean?  It's kind of like this thing that's like, oh, well, at least they're smart. Like, that's the best thing you could ever call anyone. So, I feel like, with the way that our society thinks of intellect in that way, finding out that your child is intellectually disabled is like, well, now what?

 

Marci Dunning  13:14

I think in society we are definitely seeing a shift away from physical beauty and more to intellect. Which, I mean, that's a good thing in and of itself to not focus on physical beauty so much.  But when I grew up, I was in all the gifted classes. I did college in high school so that I could get a head start on college. I always was told, like, "Marci, you're so smart." And then I had kids, and I passed that on to them. And I prided myself, because not only was it a part of me that I saw it in them, but it also was just, like, when you go to your kindergarten assessment, and they say, "Oh, they know everything. I don't have to teach them anything. They're so smart. You've done such a good job parenting these children." As if I somehow did something to make them that way. Like we must have worked really hard. Like it was a direct reflection on my parenting and my parenting style. 

 

And definitely, since I had Freya, I hadn't experienced that. Just barely. When we had parent teacher conferences, my daughter's teacher - as in for my daughter, Fiona, who is eight - came in and said, "Fiona is at the top of her class in reading, she's at the top of her class in math. She's so smart. You must be so proud." And this was the first time in my life where I looked at that teacher and I was like, "Well, is she kind to people? Is she making friends? Is she socializing okay?"  Because now that I've had Freya, I now see that intellect is not the most important thing in life. The most important thing in life is being a good person. And being kind. It was the first time that that just clicked. He said all those things, and they meant almost nothing to me. What I care about is whether my children are kind human beings.

 

Madeline Cheney  15:23

Wow. I don't know if it sounds cheesy, but it's such a beautiful evolution to recognize, because you probably never saw anything wrong with it, right? There's nothing wrong in finding your identity through thinking, "I'm so smart. My kids are so smart. This is so fun to hear about how well they're doing in school." But to think, my whole perception of that is shifted, my whole perception of life has shifted... And I think like a lot of us, I mean, I can totally relate with putting so much more weight on kindness. And I think part of it comes from when you have a child with disabilities, and you're like, okay, I'm very aware of the unkindness of the world right now. Like, I'm aware that he will probably get teased and that crushes me. I don't know, I think it just it really opens our eyes to the fact that, oh, suddenly our child could be such a victim to that. And so that it puts a whole new value on kindness. I hope that they're surrounded with kindness, and I want them to be kind. And, I don't know, I think there's probably a pretty common theme of valuing that a lot more.

 

Marci Dunning  16:26

Yes. And I definitely went through...I remember seeing something on Instagram, it was a picture of a butterfly. And it said, "Caterpillars have to turn into a pile of goo, before they can evolve into a butterfly. So, if you're feeling like a pile of goo right now, you'll be a butterfly soon." And that was right, when I was really examining how I felt about Freya's intellectual disabilities, and how disappointed I was that she would have intellectual disabilities. I remember saying to my husband, like, "I am such a horrible person that I put so much value in my kids being smart." Like, what does that say about me? It's the same as saying like, "Oh, my children are so beautiful." You never would walk around and be like, "My child is the most beautiful in the class. And that teacher told me that," but somehow, it's acceptable to be like, "Yeah, the teacher said my child's the smartest one in their class," and to have real pride in that. 

 

And to really examine that I put value in intellect. Because finding out she had a physical disability was not... like I said, we cried for five minutes, and then we were over it. In finding out she had an intellectual disability, I ignored it for a year, and grieved. I mean, she's only three. I grieved for two years; I'm still grieving sometimes over it. And it's not only that I grieve for what her life will look like, because society looks down upon people with intellectual disabilities. I grieve that I was one of those people. That I was part of the problem and didn't even know it. And I was proud of it. And that just made me feel like that disgusting pile of goo.

 

Madeline Cheney  18:32

Yeah, I think it's like when you mix shame into grief. It's like, that's a horrible thing to work through, right? When you're like, "I am so sad about this." And to think about what a terrible person I am to feel so sad about this, right? That's just gonna screw over your processing of it all. I mean, like, I can relate with that, in a lot of ways. I think we have really high standards for ourselves, and I think that's why this is such a complex topic. 

 

Because I think that there is absolutely, 100% always a grieving process that comes when you find out your child has an intellectual disability - and it's like, if I find out my child might die, or is going to die from the syndrome, that's something that I think feels a lot more like, oh, of course, I'm sad about this, right? Like, that's something that I'm allowed to grieve.  But if my child is here, and they're healthy, or even if they're not, but if intellectual disabilities the thing you're grieving, then what does that say about me, that I'm so sad about this? But same time, we do need to process through it, we do need to grieve it and it's okay. Though I also see why it feels kind of cringy to think, why am I so upset about this, and why can I get over it? And especially when you hear from parents who are very, quote unquote, accepting or celebrating of their child, and saying like, "I love my child this way, I would never change them." And if you're looking at them and thinking you can't say that, you know, I think that feels really bad for lack of a better word.

 

Marci Dunning  20:01

Yes. And I honestly am at a point where I don't know if, I mean, I still can't say that. If someone were to come up to me and say, "Snap your fingers, and I would take this away from your child," I would be snapping so fast. And it's not solely, or at all that I don't love her how she is, but it is how society makes this so difficult.  That I can't fully enjoy my daughter, because I have neighbors and family members telling me either she is so special, she's a special spirit that God sent to this body, or she must be sent here to teach you a lesson, because you obviously have to learn something. And those are two opposite sides of the spectrum and neither one I believe are the truth. I believe that Freya is Freya, her little genes were always the way they were. And she always was going to be who she is. But society doesn't believe that.

 

Madeline Cheney  21:13

Yeah. And I think it's so interesting that even within the disability community, and within, you know, the parents-of-kids-with-disabilities community, oftentimes, an intellectual disability is kind of seen as the bottom of the social ladder. They're like, "Oh, don't worry, my child has dwarfism, but she's so smart. She's gonna do all the things your kid will do, she's just small." Right? Like when they're like spreading awareness, and those are the things I say. And it does make you tilt your head like, okay, what are you saying about intellectual disabilities? Like, what are you saying? What if she wasn't so smart? You know, that's sticky too.

 

Marci Dunning  21:14

It is very sticky. So, when we found out about her limb difference, we immediately found the limb difference community, which is great. They are so supportive; they all believe their kids can do whatever they want. And that's kind of the theme, that our kids can do whatever they want, they just have to do it differently. They'll highlight, look at this doctor, she has a limb difference. Look at this major league soccer player, she has a limb difference. Having a living difference won't affect your child. 

 

And I am a part of that community, but also, every time I read one of their posts, I kind of groan inwardly, because that's not my child. And they are saying, worst case scenario, is that they're not smart or athletic. And my child will not be academically smart, I believe Freya's smart, but she won't be even in the same classes as her peers academically. And she won't be a doctor, she won't be a major league soccer player. Best case scenario, she could move out of the house one day, and that is our future.

 

And when you are in the disability community, it does focus on cognition, because the world tells you, if you don't have the body, the able body, at least you're smart.  The only celebrities I know that are disabled are able minded. You look at Stephen Hawking, and everything anybody says about Stephen Hawking is that his mind is trapped in his body. He's so smart, he's living with this disability, but he's a genius. And you look at, like, Christopher Reeve and it's the same thing. Like, oh, he's living with this disability, but he still is all there. He still is so smart. He still is doing charity work and making the world a better place with his mind. So, what happens when you have a daughter that has both the physical delay, and the intellectual delay?

 

Madeline Cheney  24:25

I mean, it feels like so similar to even that, "Oh, don't tell my daughter that she's pretty, tell her that she's smart."  Or "Well, at least they're smart, right?" Like, that's like the end all of everything. If you have brains, then you're fine. And so, it is kind of like, well, what if you don't? Again, Freya is very smart, and I'm not saying that these kids are not smart. But when it comes to the traditional, academic way that our society values, it's like, then what?

 

Marci Dunning  24:53

Yeah, and then what? Then our life is the worst-case scenario for everybody. Except for those that are living it.

 

Madeline Cheney  25:01

And here's one thing that I think is also really interesting about this topic - I've often thought, and I don't even know why this is the case, but I feel like almost every single disabled adult that I follow on Instagram and learn from are wheelchair users. And for various reasons, I'm thinking like, what's it with the wheelchairs? In my experience, I feel like that's who I see. And you know, my son is not a wheelchair user, but he is disabled.  But then there's this other part of it all where I'm not seeing anyone out there who is speaking from their experiences that do have intellectual disabilities. I hear no representation from them, in part, I think, because a lot of them are non-speaking, or because it is trickier to communicate in the traditional way. And so, I think that's a really fascinating part of this. The fact that we don't hear much representation from them, from people living with this type of disability.

 

Marci Dunning  26:01

We don't. And like you said, it is made more difficult because most of the adults living with severe intellectual delay are non-speaking. But I do see a very bright future, and I hope for that with communication devices. We're starting to see a lot of adults with Down Syndrome speaking out, which is great, because they have more of what I consider mild compared to where Freya is. I know other people don't consider it mild, but they have a more mild, in my mind, form of an intellectual disability.

 

Madeline Cheney  26:39

Maybe like more functional, right?

 

Marci Dunning  26:41

Yes, because they're able to communicate. And so, you're seeing them speaking up, which is fantastic. And I'm hoping the next wave is non-speaking people using communication devices to start speaking to their legislature, to their schools, and saying, "This is what life is like for me. And my experience is valid, and it needs to be known."

 

Madeline Cheney  27:07

Yeah, I think in the meantime, it does feel like with a lot of that, the parents kind of take over, right? And I think it's a sticky situation again, because you hear a lot of like, "Don't speak for your child, let them speak for themselves," or how it's their story to share. But it is tricky when Freya may never have the capability to share it in the way that we consume. And so that's also just like, oh man, that's kind of dicey.

 

Marci Dunning  27:34

It is very difficult because I never want to speak for Freya, because I am not disabled in any sense of the word. So, I don't ever want to speak for her on how disability affects her. I really try to be aware that I am speaking from my point of view and my family's point of view, and how this affects us. And when people talk to me about Freya, because it is very rare that people actually speak to Freya - I can probably count on one hand the number of people that speak to Freya - even including my family.  And when they speak to me about Freya and her disabilities, it's about how that affects me, because I don't know how it affects her. I do know that Freya does comprehend a lot. And I feel very sad that she has to sit and listen to these conversations of the assumptions people make about her because she cannot communicate. And the way they speak around her and through her as if she's not there, just because she can't talk back. And that saddens me because I know she is comprehending what is being said.

 

Madeline Cheney  28:58

And so, wouldn't it be wonderful if people spoke to her right? Like, to everyone listening, I think like we were that person, right? Like we've done that whole, 'I speak to the parent, I don't talk to the disabled child because I'm not really sure how to interact with them, and this feels kind of weird and they probably don't understand me.' But now, I feel like from this side of the table here, we understand this better. It is kind of like, so speak to her.

 

There's also the side of infantilization of people with intellectual disabilities, where it's like, oh, well, she's the cognitive age of a three-month-old. But she's not. She's not a three-month-old. Right? So, I think it'd be great if society could shift that a bit, and, you know, speak to Freya, and just learn the different ways of connecting with her than you would the typical child.

 

Marci Dunning  29:44

Yes. And I hate the tests they do to tell us. Because every six months, Freya has a test that tells me where she is developmentally. And every time, her receptive language is very low. And every time, I say, "I want it noted, I do not agree with your assessment." How can you tell me what my child is understanding within the hour that you spent with her? I spend 24 hours a day with her. I know, she understands more than that, and I probably don't even know what she's understanding. I probably only know a small sliver of what she's understanding.

 

And so, these arbitrary tests we give our kids... our last test, they said she was five months receptive language. And I was like, there is no way. She understands more than a five-month-old.

 

Madeline Cheney  30:44

Yeah. Ugh, those tests. I mean, there could be whole episode about that. But those tests, like the deficit testing is just, and I felt that too, and I'm sure every parent has with these tests, where they're like, "We're gonna spend an hour with them, and we're going to tell you, here's their official level of each thing."  And you're like, "He's really shy, like, he hates being tested." Like with Kimball, because he knows what's going on, and he's like, nope. And so, every time it's like, well, he does know more than what you're saying he does.

 

Honestly, that is something that I've also noticed, how in these meetings, like IEPs, or any kind of thing when they're assessing their different levels or whatever. I feel myself thinking, no, he's smart. He's smart. Look what he can do. Look, he can do it. I'm like, okay, here we are again with this internalized ableism, of that "let me show you how much he can do," because that's what the focus is. It's like, but what can they do? And what do they understand? It's just frustrating. And I know that there's some merit to it, but yeah.

 

Marci Dunning  31:39

I just...there has to be a better way.

 

Madeline Cheney  31:41

Yeah.

 

Marci Dunning  31:42

Maybe one day, one of us will be the one to come up with a new system. But there just has to be a better way.

 

Madeline Cheney  31:49

I mean, even if they just listened to the parents more and took that as like, "Okay, here are the results we got. Now, let's talk about this. Does this feel accurate?" "No, she knows more than that. Let me tell you about these different times that she's responded to this or that and whatever." And then, "Okay, we're going to take what you said, and we're going to take what we found, and we're going to combine those to make a more accurate assessment." Right? Wouldn't that feel good? To be like, yes, I'm with her all the time. One hour is not going to tell you what you need to know. That yeah, anyway, it's kind of a tangent. 

 

But I think, also, I loved that you mentioned, I was like scrolling your Instagram one day, and you were talking about all the therapies that Freya has, and you're like, "I don't do the stuff that therapists tell me to do because I can't. I have so much to figure out and to handle just in life in general. And then trying to do all the little assignments that therapists give it like it, no, I can't do it. And so, I don't."  And when I read that, I was like, yes! Thank you for saying this because I relate with that. I mean, like, Kimball's, not in therapy anymore, now that he goes to school for the deaf, and he gets his services there. But that zero-to-three early intervention, I mean, I hated that, because it was this constant thing of like, oh, my gosh, how can I fit these into my life of like doing the therapies? And I think in a lot of ways, like the therapies, like, and you mentioned this, that there's such a pressure to, quote unquote, catch them up.

 

And kind of like how you mentioned before, of like, oh, I must have done something right for my child to be acing their kindergarten testing. Like, look at me as a parent, I'm so great. Not that you were like saying all those things, but like, kind of that feeling as a parent, we affect these types of things. And so, it's like, well shoot, if my daughter is, quote unquote, "behind" or "delayed," I have to catch her up.

 

Marci Dunning  33:38

Yes, I definitely felt that in the early days with Freya because the physical therapist and the speech therapists and occupational therapists would come and they'd give me my assignment and say, okay, she needs to do this for like, an hour a day. And I'd be like, okay, we can do this. We're gonna get it. I would do it, and we finally hit a point where I was so exhausted, and Freya was so exhausted. And I just kept pushing through, because I kept feeling like, if I don't do this, she'll be behind, and it'll be my fault. 

 

And Freya, is, I feel like we don't have a word for it and American English, but in British language, they call it cheeky, and I love that. She is cheeky. And she went on strike, she could stand against a wall by herself, no support. And she basically just was like, I am done. And she refused to stand, even supported, for six months. And that was my wake-up call. It was like, a) I have four kids. I can't be doing three hours of therapy with my child every day on top of getting my other kids to school, and making sure their needs are met. and making sure they get to their activities, and making sure we get to doctor's appointments and therapies. I don't have time in my life for three hours therapy a day. And neither did Freya. 

 

I felt like a therapist and a caregiver, and not a mother. And that connection with Freya wasn't there because I wasn't singing silly songs and staring into her eyes at night as she fell asleep, I was preparing feeds and making sure she stood up, in making sure she was building those muscles, so that her hips wouldn't come out of socket. I was doing all of those things, and I was not being a mother. And now, especially with the intellectual disability, that pressure that you get from school - so you need to read to her every day, you need to make sure that she's getting exposed to songs and talking. And I feel like when I let that all fall away, all of that pressure, Freya started opening up and showing me who she truly was. And I felt like a mother. And I could read her books, but because it wasn't an assignment, and it wasn't a pressure, we enjoyed it. I didn't care about telling her the different colors in the book. And I didn't care about inflection in my voice and being worried about all these things the speech therapists said I needed to be worried about. That we could just enjoy each other.

 

Madeline Cheney  36:25

Yeah, oh, my gosh, that resonates so much. Like you say, I was her caregiver and her therapist, I wasn't her mother, like, I didn't feel like her mother. And then the fact that, once you were able to realize, whoa, we need to like, not do these things. As you know, there's a balance, of course, but like to be like, we're not gonna focus on this, and to watch her thrive and to feel your relationship strengthen, and to find joy in reading the books, because I think there's so much to be said for that. 

 

Like, if it's an assignment to read your child a freaking book, that's not going to be this fun thing anymore, it's going to be on your to-dos, it's gonna be like, I need to sweep the floor, I need to make the dinner, I need to read her the book. It's gonna go right there with all the other kind of mundane tasks. Like you're reading a book with your child, and that should be something that's joyful.

I just love how you expressed all that because we have listeners in the audience that are therapists.

 

And I hope that for those of you who are listening right now that are in that therapy world, that this can be a really good insight into what it is like for us as parents, because we are just parents. Like we have a whole life, you know, other children maybe, and a partner, and a lot of us have the housekeeping tasks too. Just all of it. And then the effect that that has on our child. Like, it's just something that is so important to understand and keep in mind when working with families.

 

Marci Dunning  37:46

Yes, and I feel like that is the therapist's job. Why do I take my kid to therapy if then I have to go home and do therapy again? So, I am very upfront now. Anytime we have a new therapist, I will say, "Yeah, we're not gonna do that." It's amazing." You want me to do what? Yeah, we are not gonna do that." Because we have lives. And we're gonna go live life, because at the end of the day, when I'm old, and Freya is gone, I want to remember the good times. I don't want to remember the therapies and her hating it. I want to remember going out and enjoying my life with my family.

 

Madeline Cheney  38:31

Yeah, I think that touches on a really good point too of like, what's best for the child? We're like, oh my gosh, we have to catch up our child and oh my gosh... Like the word 'delay,' I feel like that is the one that really gets me because it implies that they're behind, but really, they're just at a different place. Right? Like they're just different than your typical developing child. And so, there is kind of this urge to fix them, right?

 

Marci Dunning  38:55

Yeah.

 

Madeline Cheney  38:55

And no parent should feel like you have to fix your child. I mean, like go fix their heart issues with the heart surgeon, right? Like those are the things that need to get fixed. But I don't know, I love the perspective of like, is this what I want to remember? Is this how I want to spend my life with her? Is it trying to catch her up, and in a way that she's not enjoying either, neither of you are.

 

Marci Dunning  39:14

Yes. And I feel like that's a common thread in the disability community, especially the intellectual delays - my child will do everything your child does, just later. That won't be Freya. Freya is not going to do everything. And that's okay.

 

Madeline Cheney  39:34

Honestly, that feels like a really important, like, I've thought a lot about that acceptance, right, that phrase that, like what does that mean for us as parents? Like what does it mean to accept your child and to accept their disabilities and accept your life, whatever. I feel like there are definitely layers. You know, there's gonna be different versions of acceptance, maybe just different stages of it. I think some parents will never get to certain levels that other parents get to depending on their situation, and their child, and like just a ton of different factors. 

 

But I think the feeling of like, my child will never get to the point that your child will, like she will never do all the things that this other child is going to do. And there it is, like, maybe I'm not even okay with it. Maybe I feel sad, but that's just how it is. It is what it is. And I feel like that is a really important layer to acceptance, it doesn't mean you love it. It doesn't mean you're not sad about it sometimes, it just means you're like, it is what it is. And I guess you're not in that denial stage anymore, right? Like, you're like, yeah, it's there. You've left, you've left that.

 

Marci Dunning  40:30

I have left the denial station, finally. And acceptance, to me, is very much, I'm trying to accept that disability is part of the human condition. And, like you said, that doesn't mean I'm not sad about it. It doesn't mean when I see another three-year-old, potty trained and feeding themselves, that I don't feel that twinge of oh, I wish that was us. But I still can love my daughter for who she is and accept that our life is going to be full of extra challenges.

 

And say, yes, I still would pick this life. If it meant a life without Freya, or this life, I still would pick this life. Now, if I could change it, would I? Yeah. But you can't. So, what's the point of looking into these magical what-ifs and feeling bad about it? Because I can't change it. And it never will be changed. So, I can still say without any shame whatsoever, "Yeah, I would change it if I could. But that's make believe. And this is the life we have. And I'm glad Freya is in our life. And I would choose to keep her and choose this life over a life of not having her."

 

Madeline Cheney  41:51

Yeah, I love that. I think that's such a multi-layered concept of this love. and this unconditional love. And it's like, I'm not saying I don't love her. Like I'm not saying this diminishes my love for her, but I would want things to be different. For her and for me. And I think that like, there's such a pressure on parents, and even in a few episodes that I've done with parents that have reached a really... I don't want to say intense, I don't know, like a really... you know what I'm saying? Like a really high level, a very evolved level of acceptance, I don't know, where they can honestly say I wouldn't change things.  And I feel like there's this pressure for us to be like this, like I have to get to that point. And I think some parents will at some point, you know, maybe years and years down the road. I don't think every one of us is going to be able to say that, and I talked about this in Episode 77.

 

Marci Dunning  42:44

Oh, I love that.

 

Madeline Cheney  42:45

Because I've thought about this a lot. I'm like, why do we have this pressure to say, “I wouldn't change things?” And I think then a lot of it is like, oh, then you're ableist if you say you would change, I don't know about changing your child, but if you would change the situation. But the fact of the matter here, here's like a little controversial thing I'm gonna throw in here, even like within the disability community, when I hear disabled adults talking about, "Disability is awesome, and I love myself the way I am," I'm like, that is so great. But I'm also like, but can you honestly say you're not sometimes frustrated? You're not sometimes kind of sad about it?  Because I just feel like for anyone to ever say "I am 100% so happy with this thing" leaves out the depth of it.

 

And I'm like, I'm not sure that, like how different is that than toxic positivity, I guess is what I'm trying to say. Like, maybe it's okay for it to have this multi-layered, "I love this, but I'm also kind of frustrated, but also I'm so happy, but also I'm grieving." I just think allowing ourselves to have all that depth to it, and being okay with it, is going to be such an empowering place to be. You know, like, we don't need to be like "I wouldn't change anything," we don't have to be at that point. Now or ever.

 

Marci Dunning  43:52

I feel like most disability parents that I know aren't at that space. And I feel like for those that are, I just can't relate to them as much. Because you know, my daughter, her syndrome won't kill her. But they do have a lower life expectancy. So, there will be things that pop up that will kill her. And to be fair, if she didn't have that syndrome, those things wouldn't pop up. Right? I can never say I'm happy she has it because I know one day it's going to take my daughter away from me. And I know that it means I can't communicate with her.

 

She can't come home and tell me, "Mom I had such a great day at preschool. I was on the swings I played with my friends." I have to have her teacher text me at the end of the day, to tell me how her day was. So, I will never be able to say I wouldn't change it, because it does take away a layer of my relationship with my daughter. And that's the hang up for me. That's the point where I say I would change it, because I would love to talk to Freya.

 

And I hope, who knows, one day I might be able to. But right now, we can't. And I'm missing out on so much because she doesn't have that form of deep communication. She has a couple of signs, but we can't have conversations about how she feels and how her it is. And even if we do, it will be so far in the future. That is what I will miss. And that is where I can't say, "I'm okay, and I wouldn't have it any other way." Because I would keep her my whole life. And I would talk to her every day. That is where the grief comes from continually for us.

 

Madeline Cheney  45:46

Yeah, and what parent would not grieve that? That's what I want to know is what parent would not feel sad about that. I can't think of any parent that wouldn't feel sad about that. It's so tied with how much you love her. Yes, knowing that you're going to lose her someday and not being able to have the level of conversation that you would love to have with her. Like, those are very tied into, how much you value your relationship with her, and how sad you are because it's not at the level that you know, it could be. That's not even the best way to phrase it, but you know what I mean? Like grieving that.

 

Marci Dunning  46:16

The level I want it to be, and for the length of time I want it to be. Yeah. That's what we're missing out on.

 

Madeline Cheney  46:23

Yes. Well, just as a tiny side note, I've also thought of how I feel like the people that I've noticed have the highest level of acceptance, I don't know if that's the right way to put it, you know what I mean, the most intense acceptance or whatever.

 

Marci Dunning  46:37

Yeah. Yes, yes.

 

Madeline Cheney  46:37

It's often with a parent who has a child who was not supposed to live. The doctor said, "No, they're not going to live past one, they're going to die." And they grieve, like, my child is going to die now. And then, by miracles of medicine, or you know, whatever it is, all the different factors, they do live. And they are, you know, intellectually disabled. I feel like those are the parents that have that level of acceptance that we're kind of like, whoa, how can you say that, but I think it's just a whole different place to come from. To be like, my child would have died, but they're not. And so, oh my gosh, every day feels like a miracle, because I did not expect this to happen. 

 

And again, that doesn't mean that you are a bad parent for how you feel, or anyone who's listening that agrees with you, it doesn't mean that that parent is like this angel on a pedestal. I mean, I think it's just like, just acknowledging that the place that we're coming from with this, and the type of diagnosis and things like that, I think plays a really big role in quote, unquote, acceptance. You know, whatever that looks like for each person.

 

Marci Dunning  47:36

Yes. And all our lives and lived experiences and everything we have gone through to make us the person we are, will change how we feel about things. So I really try to never judge anyone for the way they feel. A, because I've gone through the whole run of emotions.

 

Madeline Cheney  47:56

All the stations, right? We've gone through all the train stations.

 

Marci Dunning  47:59

Yes, and go back and visit them. And secondly, I don't know what their life has been to lead up to this point, to get them to that. So, it is very different for every person, and even the same diagnosis, even within the CdLS community, there are those radically accepting 'my child is the way they are and always should have been, and I love them, and I wouldn't change it.' And then there's more me that's like, I would still change it. So, you have to give each other grace on where you're at. And maybe I'll get to that point one day, maybe I won't. And that's okay.

 

Madeline Cheney  48:40

Yes, yeah, I love that. And I think like recognizing, like, everyone comes from a different place, including yourself in that. I mean, like, I also come from a different place. So that way, when you're processing and maybe grieving, or just going through, you know, all the different train stations, that you give yourself the grace to be like, "and I have my own stuff." And a lot of that stuff, like, you know, the internalized ableism that a lot of us have to try to figure out, it's like, I didn't choose to grow up in a society that is ableist. It's even things like that, not to be victimized, but just to be like, you know what, this is my life experience. This is the way I was raised; these are the things that people said around me, and therefore, you know, this is a harder thing to process through then maybe it'd be for the next person that was maybe raised in a different situation. But I think having grace in that is gonna make a difficult journey a lot less shame ridden while you're riding this ride of all the emotions.

 

Marci Dunning  49:35

Yes.

 

Madeline Cheney  49:36

I would love to wrap up with what you would say to a parent who has just found out that their child is going to be intellectually disabled - so what you might have told yourself in the beginning, and what you wish you would have known.

 

Marci Dunning  49:51

I would just say that intellectual disability is not what you think it is. You are going to have a child that has that their own personality, and their own likes and dislikes, and they're going to be able to do things you never thought they'd be able to do. And there's going to be some things you thought they would be able to do that they can't. And all of it is okay. And it's okay to deeply, deeply grieve, and examine your beliefs, and allow them to change, and not feel shame around the beliefs you have grown up with. And just know that they will change. Because you love this child so much, you will see the beauty in the difference that they have.

 

Madeline Cheney  50:39

I love that. Thank you so much, Marci, I really appreciate you coming on and having such an honest conversation about something that's, you know, a little kind of tricky to talk about.

 

Marci Dunning  50:50

Yes, I was so nervous to come on and talk about it.

 

Madeline Cheney  50:53

I mean, I felt the nerves too. You don't want to offend anyone; you don't want to say the wrong thing. But I think, again, just the fact that you were so honest about how you felt about this, I think that's the most important thing. For a really honest space to talk about what no one else talks about.

 

Marci Dunning  51:07

Yes, I never want someone to feel the way I felt. In that feeling like a horrible person for feeling the way I felt. So, I feel like the more that we're open and talk about it, maybe the next person that goes through it can be like, see? Marci felt the same way. It's okay.

 

Madeline Cheney  51:25

Yes. Yes, that is always the goal. Well, thank you so much.

 

Marci Dunning  51:31

Thank you.

 

Madeline Cheney  51:33

You can find adorable photos of Marci, Freya, and her family on the website. There's a link in the show notes for that. You can also find links in the show notes to connect with each of us on social media. You can also find links in the show notes to the episode that we mentioned, episode 77, to those who cannot say I wouldn't have them any other way. And another solo episode from forever ago, episode nine: three tips for taking charge of your therapy and medical team just in case the part of our conversation about saying no to therapies and kind of being more assertive in that intrigues you. 

 

Join me next week for a story episode with beloved Australian author Melanie Dimmitt, who penned the book Special, all about having children with disabilities. Which, honestly, when I was reading it, I was like, this is kind of just like a book form of the podcast. So, if you love this podcast, you'll love her book, and the episode that we did together. So, don't miss it. See you then.