Communication Breakthroughs: Listening to Neurodiverse Kids
Why curiosity helps you SHINE as a parent of neurodiverse kids, with Valerie Arbeau
The other day I had the pleasure of interviewing Valerie Arbeau, an inspiring life and health coach, and a resilient mom raising 2 neurodiverse children. The result is a moving podcast episode full of twists and turns, as we follow her 21-year parenting story. Valerie opened up about communication devices, low demand parenting, pathological demand avoidance, autism, adhd, cerebral palsy, and more.
Note that this episode is on the longer side. I couldn’t exclude or separate any part of it; it’s enriching, hopeful, and tender. Join us (via podcast, video, or transcript) as we embrace the curiosity, compassion, and understanding that helps us SHINE as parents of neurodiverse kids.
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Valerie introduces us to the "SHINE Principle" that has guided her through the tumultuous parenting of her two neurodiverse children with grace and strength.
From navigating her child's non-binary identity to pioneering ways for her non-speaking daughter to communicate, Valerie's story is a testament to the power of acceptance, support, and unwavering love. Valerie advocates for attentive parenting, learning to tune in to the diverse ways her children convey their needs, a skill she humbly admits wasn't always second nature.
The practical suggestions in her book, “The S.H.I.N.E. Principle: The Special Needs Mom's Path to Strength, Hope, and Happiness" along with the relatable stories, will motivate you to care for yourself, which will positively impact your whole neurodiverse family.
"Just watching how people stared, watching how people ignored, watching how people just pretended they didn't see us, that is hurtful. Now I have my youngest who has a disability that's not visible and seeing how they had gone through school and how hard it was for them to feel like they were included, to feel like they fit in."
— Valerie Arbeau
Transcript:
Podcast Intro
Valerie: I would definitely say, listen to your child. They may communicate in different ways. My oldest uses a communication device. My youngest has excellent verbal skills. They were trying to communicate with me what they needed, and I wasn't necessarily picking up on all of it.
Sharing with my child how I perceive my mistakes has been therapeutic. It's been actually quite cathartic for them as well as for me, because now they see me not as a threat. We're still being respectful of each other and still showing love to one another.
I'm not going to say this happened overnight. This has been a process over a number of years. But saying yes to self, recognizing that I'm just as important as my children are, and for me to be able to give to them what they need, I need to be taking care of me.
Kate: Hi, parents. Are you feeling overwhelmed parenting your neurodivergent kids during these stressful times? Yeah, me too. Welcome to Mindfully Parenting Atypical Kids, a neurodiversity affirming parenting podcast where you'll find connection, strategies, and support for your journey.
[00:01:09] Welcome. I want to introduce my friend Valerie to you. Valerie Arbeau is a certified life and health coach and has over 30 years experience as a physical therapist. Valerie has been married to Scott for over 30 years and they have two children, both with differing challenges.
Discussion of "The SHINE Principle" Book
Do you want to just tell us the Shine Principle right off the bat?
Valerie: [00:01:42] Sure. I'm all about shining because I think that's what we're here on this earth to do. Shine stands for S, saying yes to self. As special needs moms, or any mom, we tend to be putting other people before ourselves.
And I want to make sure that people recognize, moms recognize that it's okay to say yes to yourself. We are so good at making sure everybody else's needs are taken care of. The children, the partner, whoever it may be. Often we put ourselves on the back burner, and I remember myself being, oh, I'll get to it. I'll get to it, I'll get to it. And there's always stuff coming up and rarely do we get to it. So saying yes to self is the first thing, and making it okay for you to be a priority in your own life. Just as you make your children a priority, you can make yourself a priority too. H is for have a relationship with a higher power. I am a Christian. I've chosen to have a relationship with God. Each and every one to their own, but recognizing that we're not meant to do this journey by ourselves. We can actually utilize help from a higher power.
I is be an inspiration. We want to role model for our children and we want to be an inspiration so that they can aspire to being the best they can be.
And so if we're being an inspiration within our homes, within our sphere of influence, then we can help others to strive to do the same. N is nutrition. We know, we are what we eat and what we drink and so if we're coming from a place where we're taking care of our bodies, we can make better decisions because we'll have more clarity and as we're maturing, I'm at that stage in life where the brain fog starts to kick in a little bit.
Taking care of what I put into my body is hugely important. And then the last thing. I'm a physical therapist. So exercise, I'm going to bring it up. It's so important to move your body. I know a lot of people think exercise, ah, they don't want to go there. And it's brings up negative connotations for a lot of people, but I like to think of it as movement.
In my book, I talk to people about thinking back, what did you used to enjoy when you were a kid? Then revisit something like that, right? That way we can just get our bodies to move. Cause again, there's so many benefits.
Kate: I'm a yoga teacher, so of course I'm on board with that. And one of the things I learned recently is that for mental health, we only need five minutes of movement, but on a daily basis to help maintain our mental health. So it really doesn't have to be a lot.
Valerie: Right. Exactly. Five minutes. And that's one of the things I talk about with my clients as well. Sometimes just finding five minutes because sometimes that's all we have. But making sure we take those five minutes and do something that's going to benefit us. And I love how you brought up the mental health aspect because exercise, movement, is huge for that.
Kate: [00:04:37] So Valerie, why should people listen to you about all these principles? Can you tell us a little bit about your story? Like, how did all this dawn on you that we need specific principles and self care and reminders about that as parents of kids with disabilities?
Valerie: Yeah, sure. So I've been on this journey as a special needs mom, parenting two children with disabilities for 21 years. Don't tell anybody, but I hit 60 last year, and I tend to have a lot of energy. But the reason I've been able to keep going at the pace that I do go is because I have taken these principles to heart. I have said yes to myself. It took a long time. I'm not going to say this happened overnight. This has been a process over a number of years. But saying yes to self, recognizing that I'm just as important as my children are and for me to be able to give to them what they need, then I need to be taking care of me. Yes, I have been at a place where I was not taking care of my health, where I was not eating as well as I should be if I was eating at all. I was not eating nutritious food to help my body, so I went through a place of, not able to really think clearly, not making great decisions, just being tired all the time.
[00:06:00] It was then that I realized that, yeah, something needs to change. Having a relationship with a higher power has helped me along on my journey because it's hard when you come to the place where you recognize and accept that your child has a disability, and not that that changes who they are. It's just processing that you didn't get what you wanted.
Kate: Can I pause you for a second? Yeah, absolutely. Your first daughter, like, did you know she was going to have a disability before she was born? Can we hear a little of that origin story from you?
Valerie: Oh yeah, absolutely. So my first baby, we were seven years trying to get pregnant.
So when we got pregnant, it was like a miracle. We were so elated, had a beautiful pregnancy, did not know that a cord could prolapse. So I had a prolapse cord, I had a bad chest infection, coughing, coughing, coughing, and then I felt something between my legs and that was the umbilical cord. We knew when Melody Ann was born that she would probably have something going on.
It was interesting because the medical staff knew. My husband and I are both healthcare professionals, so we have both worked in intensive care unit. We've seen people get on ventilators, get off ventilators, and Melody Ann was on a ventilator when she was born. So it took about 24 hours to really process the severity of what she had gone through with that traumatic birth.
We had time to start to process. And then it was like, okay. Once we realized, we recognized that she was going to be a child that was going to need help. So she needed a G tube to feed. She wasn't able to coordinate those 26 muscles that you need to swallow. We were told that she would probably not live past a year.
That was the prognosis we were given. We determined that it was going to be the best year. So we recognized that she was going to have disabilities and that proved as she grew.
Adaptations in Parenting Style to Accommodate PDA Profile
Our second child was a different story. They were challenging to raise. We had a beautiful pregnancy again at birth, went fine, gorgeous, beautiful, bright child was reading at the age of three.
So really didn't think anything of it. And I think too, we were probably absorbed with our older one dealing with the G tube, the communication and the wheelchair.
Kate: How far apart are they?
Valerie: Three years. Okay. Yeah. And I wasn't going to have another child because I figured I had enough fun with the first.
[00:08:26] My husband saw a picture of a little boy in his wheelchair and his little sister standing beside him.
And the two of them were just laughing their heads off. And Scott said, I want that for Melody Ann. So it took me a little time to process. Be ready.
And so we were just excited that she was able to breastfeed.
She was able to talk. She talked early. She read early. She met all the developmental milestones. And it wasn't until I'm going to say about grade two, when I realized that they weren't getting invited to birthday parties. It's like, Oh. Okay. And so some of the social stuff started coming out at that point.
[00:09:00] And then I remember grade five saying to the teacher, not sure what's going on with my child. Oh, they're fine. Just preteen syndrome. I've got three girls. I know all about it. Like, no, you know that gut instinct. Yeah. Yeah. And that's what I was feeling. It's like, yeah, no. No, there's more to this. This was a child that was challenging to discipline, challenging to put on a schedule and very messy.
Kate: Are you a neat person?
Valerie: I am totally a neat freak. Yeah. So it was a bit of a challenge for me, but just recognizing that, yeah, they weren't responding to traditional parenting. I was raised Caribbean, and because of my age, I had that kind of stricter upbringing.
And so you kind of parent how you were parented because you don't really know where to start. And then with Melody Ann, my oldest, there was no sort of parenting, it was caregiving. Obviously there was parenting part of that, but a lot of it was just getting the caregiving down.
Kate: There wasn't like a discipline challenge going on with Melody Ann.
Valerie: Yeah, yeah. She was just happy as long as you met her needs. Yes, and my little one was, as I say, very challenging to raise and not really understanding. That's been my journey. And even though I recognized there was something it took till about grade five, grade six to recognize that they had ADHD.
And then when they were 17, they're now 18, when they were 17 or just turning 17, that's when we got the diagnosis of high functioning autism.
Kate: And does that feel like a good fit? Do they feel happy to have the diagnosis?
Valerie: They have embraced it. And what was interesting was then the masking dropped in the home. Because we had never seen any of the stimming and that kind of stuff that they do. They feel more safe to do that in the home now that we are aware and we have the diagnosis.
So it was a bit of a shock actually, like they like to rock and flapping of hands. We did see the flapping of hands when they were younger, but there was some other stims that were coming out that we weren't used to seeing. It's like, Whoa. So it took us a little bit to process that. And then the other thing that's coming up now, and this is just very, very recent is PDA pathological demand avoidance.
The more I delve into that, the more I'm seeing that is more of a fit than the high functioning autism. So this is something that we're still discovering. And with that comes a different way of parenting. And so now I look back over the last 18 years, I'm like, Hmm. No wonder, yes, yeah.
Kate: [00:11:53] And PDA is part of the autism spectrum as well, as far as I understand, but less understood in the United States. Becoming more understood in the United States, but I think more well known in Britain. Is that right?
Valerie: Yes. Yeah. Which is actually where I'm from. That's where I was born and did all my growing up. I moved to Canada as a young adult, just pursuing my career and sense of adventure. It is good to know that apparently the research has been going on for quite a while in England. Like 40 years or so that this has been something. It's something we're just kind of discovering and delving more into and just trying to put the pieces together.
And now for me, understanding how I need to support my child, because I'm recognizing some of the things are, as you put a request, they see them as a demand and they sends their nervous system into afraid where they are not able to handle what it is that you're asking them to do. In my mind from traditional parenting, well, I just made a request, which seemed quite simple and benign to me. So now I'm understanding how my child has been responding over the last while and that what I've been thinking I'm doing as a concerned parent is actually sending them the other way and I'm being perceived as a threat to them.
Kate: Which can feel Hard for you, I'm sure.
The Process of Repairing and Connecting
Valerie: Absolutely, absolutely. And so this has been time for me to reflect and look back on and recognize that I need to do things a little bit differently.
[00:13:42] Sharing with my child my mistakes or how I perceive my mistakes has been therapeutic. It's been actually quite cathartic for them as well as for me, because now they see me not as a threat. I'm recalling comments that they've made. When I hear you coming down the stairs, then I kind of get a little frightened because I don't know what you're going to say. These kinds of comments, which is not really as a parent that you want to hear. I do want to preface that my child and I are very close, but I also recognize that how I have been, now I see it. I have created a cause for alienation. But I feel that because we have always been quite loving and affectionate that we've been able to continue that.
I believe this is a lot of teenagers, but they do spend a lot of alone time. They do spend time on their computer. But what I have noticed that's been sort of insidious is, they're not wanting to come and join us for meals or they're not wanting to sit and spend time with us or come and chat with us.
And so now that I'm putting the pieces together, I recognize how I have contributed to that. And so, yeah, that is, is huge. And as parents, we don't want to feel like we failed our children, but I can see, and this is humbling, extremely humbling. I can see how I have created a chasm between my child and myself.
Kate: I just want to validate that that is a very common experience in parents that I know, especially parents whose brain, is very different from their own brain. From what I know of you, you're very much a doer. And then on our podcast interview you did with me you were saying that you're less of a mindfulness person and more of like a get it done person.
And you said earlier, you have a pretty rigorous pace that you go at. So to have a child who has a brain that is a little more maybe messy, scattered, creative and on high alert, must be very hard. And especially if you didn't know and you didn't have the tools for that, I want to both validate and also remind you of your self compassion. We can't know what we didn't know, and we've got to start where we are. And like you said, luckily, you guys have all this, um, intimacy, this closeness, and you have the ability to repair and the willingness and the humility to repair. From what I understand, it's never too late, right?
Valerie: Right. And that is the hope and the prayer, Kate. That is the hope and the prayer. And I think being vulnerable has certainly opened up the avenue for us to walk this walk together. And just allowing them to understand that you're sorry that you may have caused them pain, that you may have caused them trauma.
That's hard for me to acknowledge, but that's what I'm coming to. That I've caused them unwittingly trauma. And when I say, well, can't you just, can you do this please? And why haven't you? I didn't know it at the time, but now I'm coming to that realization that this could be micro trauma to them.
And so this is where we need to kind of acknowledge. And apologize for that, which I've done and my child has been gracious to accept my apology, which now has opened the way for us to walk hand in hand together to parent differently. So I'm learning about low demand parenting. It is hard. I'm just gonna say it is hard because it's not my nature. So this is something that I'm having to learn to do and to let go of how I have parented in the past and do it differently.
Parental Self-Care and Preventing Burnout
Kate: When I look at stuff on social media about low demand parenting, what I keep coming back to is, well, how do you balance that with your own needs? Sure, you can bend over backwards for a while for your kid to make sure you're meeting all their needs and not putting any demands on them, but how do you balance that with, I'm still a person, like you told us at the very beginning, the Shine Principle, right? I'm still a person, I'm just as valuable as my kid. Mm hmm. So I'm wondering how you're, how you're doing that.
Valerie: Kate I am making sure I carve out time for myself. I am fortunate in my home. I am an early bird . I love to be up in the morning. I love the peace and quiet of the home.
My husband and our child that still lives with is both are people that sleep in. So I get up early in the morning so that I can have that recharge time. So that I can have my time with the Lord so that I can have my time where I'm processing what might happen today and visualizing what I would like the day to look like. That's where I get to reset. Not that I get it right every time. And not that I have a huge amount of time. Some days I might have half an hour, some days I might only have 10 minutes. But I prioritize giving myself the opportunity to recharge so that I can show up the best that I can for my kids and my husband.
Kate: The way I do it is, a couple of nights a week I stay up late and I write, so I learned this phrase, revenge bedtime procrastination, and that really resonated with me. So I think I'm a little bit of the PDA type, maybe even more than my kid.
So I can definitely relate to my kid. Ocean is 13 and I used to say he was defiant or rebellious and I've always been a bit rebellious. It just runs as a streak through my family. And we are all chaotic and we are all, a little creative and messy and scattered. So that works well for us.
And, you know, it's been a challenge to parent him. And I really bought into that belief that to be a good parent, we need to sacrifice everything for our kids. And that led me to the brink of burnout for sure. I can definitely relate to that. I'm glad that you were able to give yourself what you needed. I had a similar journey of eating scraps off of his plate, not doing the yoga that I had been teaching for 10 years by then, not meditating and feeling so worried about him because I really didn't understand what was going on and so confused.
Valerie: That's part of it, we do worry about our children and that can lead us to not taking care of ourselves.
One of the things that I'm learning, particularly with my oldest, we set her up in our family home because it was wheelchair accessible and we've created her forever home. So we have two other young ladies living with her. She was 16, almost 16 when we started this. It was hard. I felt like I was abandoning my child, but I needed to think about the good of the whole family.
I wanted to avoid burnout because burnout is real. I was on the brink of it. So that was what we came up with for our family, for the good of everyone. And I have to say she is thriving. But that step to do that. It was so, so difficult. But I knew I needed to do something because I couldn't keep all the balls in the air.
[00:21:16] Caring for her, dealing with the caregivers, caring for my youngest, being a wife to my husband and working as well. So I had to learn to start taking care of me. And the Shine Principle comes through. I had to say yes to myself. I had to give myself permission to take care of me.
I did have to take time off of work just to help recuperate and to get into a place where I could make decisions for this group home for our older child. So it is so important and part of the second chapter of the book talks about burnout. I have an expert who talks about her own journey with burnout and she gave the stats on how prevalent it is. It's more so than we, we care to think.
Kate: The stats for parents are staggering, especially working parents, staggering.
Valerie: So it's so very scary. Yeah, it's so very important to take time for yourself.
Kate: I Know that a lot of kids with PDA do end up getting burnout, right? And autistic people just from trying to navigate a neurotypical world, and navigate an ableist world, end up getting burnt out.
[00:22:31] What I've learned from my own kiss with burnout and from reading a lot about kids who have been in autistic burnout or PDA burnout, is that it takes as long as it takes. You cannot put a timeline on it. And I wonder if for you being someone who's like more scheduled, if that was hard for you. Or if that was your experience at all.
Valerie: Yes, it has been and we are currently going through it. So I did not understand autistic burnout because we are fairly new with that diagnosis with our youngest child. And with PDA, um, I was hearing burnout, burnout, like I'm not really correlating with this.
So as I'm delving in a little bit more, I'm recognizing that my youngest child has probably been in burnout and potentially still is. I love that you're saying that it takes time. And now that I'm recognizing it, this is where I'm understanding that I need to do the low demand parenting so that this child can get through the burnout.
So my child should have graduated last summer from high school and they are a bright child. And I find a lot of autistics, PDA kids are extremely intelligent. And so not understanding that intelligence does not necessarily mean that they're going to be successful in every aspect of their life. Now I'm seeing...
Kate: At least the way we look at success from a traditional standpoint.
Valerie: Correct. I'm seeing that my child has been this year trying to finish up grade 12 and they've come to me and alluded to the fact that they may not actually finish this year either. So now that I'm understanding that potentially, they've been in burnout trying to get this stuff done, and now recognizing, you know what, it takes as long as it takes.
If we have another year at high school, we have another year at high school. So this has been where I've had to grow. And I've had to have more acceptance and, um, I have, I arrived totally not, but I am definitely on my way. I'm feeling that there is going to be hope, but the biggest thing is, I've had to change.
Rethinking Parenting Strategies
[00:24:40] I've had to change my perspective. I've had to change how I do things. I've had to change how I look at things. Traditional parenting, you kind of expect your child to follow social cues and follow the social norms and the social schedule. And I'm recognizing, you know what? There are more kids that don't need that than we care to admit. It's not working.
And I had to recognize it's not working for my child. And when they didn't graduate grade 12, that's when I kind of clued in. Things need to be different.
Kate: So Ocean was diagnosed with autism when he was two something.
Valerie: Oh wow.
Kate: The very first thing they always and still recommend is ABA, which is a behaviorist program. I'm not saying ABA is terrible. I think it's really good for some people and it didn't cause that much harm, I think, to Ocean, although we've talked and I've repaired with him about some of the things, that happened. Luckily, we also had an evaluator who recommended a more play based approach.
[00:25:49] So we had both perspectives and we were able to do the research ourselves and come up with what we thought was a good balance for Ocean, but still the behaviorist stuff was really being pushed for Ocean because his behavior was pretty explosive. intuitively it did not feel good. So you talk about higher power. I use meditation and try and tune into my intuition. And I completely lost my way when he was younger. I was looking for answers outside of myself.
And it took somebody reminding me, aren't you a meditator? Can you go in for these answers? You probably already know. You can't ask me this question because I don't know all the relevant facts, but you know your child and you know what's best for your child. So how about tapping back into that intuition? That was a real wake up call.
But at that point, like we weren't getting any sleep. He was screaming a lot. He was having these huge meltdown several times a day. And I felt extremely worried, like I didn't know what was going on. So it was hard to return to that quiet place within that really does already know. That is tuned in to the wisdom of the universe, however we put it, right? That connection to higher power. That was very helpful to pause and check back in and go, you know what? It has helped to some extent up to this point, but now I'm going to trust my intuition. We're not going to do this anymore.
And I started listening to him more.
Valerie: Yes. Yes. Love that. And that's something as well that, as I mentioned, I'm recalling conversations that my child had with me or comments that they made, and now it's making sense.
[00:27:49] They were trying to communicate with me what they needed, and I wasn't necessarily picking up on all of it. So, I would definitely say, listen to your child, because they may communicate in different ways. My oldest uses a communication device. My youngest has excellent verbal skills.
So just listening and don't be afraid to dive in a little bit because that's how you create a deeper relationship with your child.
And you can come at it from a curiosity point of view. Oh, so you're thinking that? How come? Where did that come from? Tell me more. Great phrase, tell me more.
[00:28:34] And I think giving the children an opportunity to share, because often, and especially with PDA, as I'm learning that authority thing can be an issue. They perceive that as a threat. So being able to kind of come alongside them as opposed to standing over them is huge with these children.
Kate: Yeah, I feel really grateful that I tapped into that very early. I was a prenatal yoga teacher and a parent baby yoga teacher before I got pregnant with Ocean. Similar to you, was miracle. It took a lot, and we were so grateful. I really thought I knew so much about parenting and I was all about this unconditional parenting.
[00:29:14] And that set me up well, but then there was that rocky period where I was like, this isn't working and he doesn't listen unless I yell at him. So I'm going to yell at him sometimes because it's the only way he listens. I didn't know. I didn't know what I didn't know. That's something I remind parents, because I've seen over and over again, that the biggest obstacle to changing ourselves as parents is guilt.
Mm hmm. Right?
I've been doing this wrong all along, I should have been doing it differently. Now I'm completely shut down and I can't change because I feel too terrible. Hello. When we were driving horses and buggies and cars had not been invented yet and we didn't know about cars, it wasn't wrong to ride a horse .
[00:30:02] Once you know and can get a car, then you'll drive the car and it will be like, Oh, why was I ever using that horse and buggy? But we didn't know. We didn't have the car. So I try and express that to parents that once you learn about things, then you can do differently, but you can't do anything differently if you don't know.
Gentle parenting, respectful parenting, is starting to be in the wider awareness and community but if we were raised a certain way that's how we expect a parent. Like you were saying your Caribbean upbringing, and I was raised in a different fashion that also didn't work for my son.
Valerie: Yeah. I'm not concerned about the way I was raised. As you say, you work with what you know, with the knowledge that you have. My parents didn't do anything wrong. It's just, I just parented how they parented. I don't have a neurodivergent brain. My child does. Right. So that's where the difference comes in. What was parenting for me when I was being raised worked for me, but what I was trying to put on my children was not working for them. Right. And it just took me a while to understand. So now that I have the knowledge and still learning, and I think I will be forever learning, I can now make accommodations, adaptations, I can do things differently.
And now that I'm recognizing I need to do the changing because I think as I was raising my child, it's like, why are they not responding? Why are they not doing what I need them to do. Well, because they can't. Then trying to get that across to other family members. I've been listening to some other podcasts with people talking about PDA and it looks like you are letting the child rule the roost.
So it's very interesting, that delicate balance of parenting now how I know I need to parent and in some ways trying to justify to others why I'm doing what I'm doing when really it's not their business.
Right. Answering others questions or concerns about how we're parenting.
Kate: [00:32:14] It's very interesting, the really inappropriate questions that people will ask about our parenting choices or even our family size, makeup, whatever. As a podcast host, I wonder like, is this too personal a question? So I always ask before talking to someone, is there anything that's off limits? So that we don't open a can of worms. Speaking of which, to take it in a different direction, I've noticed that you're using they pronouns, neutral pronouns for your youngest child. Do you want to address that, or not?
Parental Support for Child's Gender and Sexual Identity
Valerie: Yeah. I can address that. I have been utilizing different pronouns for my youngest. Born a girl and raised in the faith, but this child has decided, I want to say now, probably three years ago now that they wanted to identify as non binary. So picture this, I'm 60 years old at that time I was coming up from in my late fifties, raised traditional Caribbean, raised in the church, raising my children in the church.
And then I get this non binary. My mind is just blown. I'm just like, excuse me, where I'm, I'm just not getting it. I just don't know where it's coming from.
Kate: Does not compute.
Valerie: It was not computing. It was not computing. Cause I just couldn't, I couldn't fathom it. And then my child. decided that they were going to try a few different things. They went non binary, they were pansexual, they were this, and all these terms, Kate, that I had never heard of, never heard of. Bisexual I'd heard of, lesbian, homosexual I'd heard of, but some of these other terms , I had no idea. And it kept changing. And I remember saying to my child one day, I can't keep up.
The way they described it to me, which was kind of cute. Mom, imagine that you go to the store and you're buying new clothes. You're looking for a new dress. You're trying on a few different dresses. You look in the mirror and how does it fit?
You turn around, you take a back view. They said, it's like that. When you are, um, discovering, trying to define, trying to understand your sexuality and how you want to present to the world. That's what it's like. It's like trying on different things to see which fit.
So I'm like, oh, okay. I'm able to understand it a little bit more. So respecting, it took me a while, and then sometimes I still get it wrong or I misgender them, but I have had to make a big, huge effort to honor how they want to be presented in the world. They are very respectful of the fact that I am older.
And I think that's the thing is that they respect the fact that we're trying to honor them. We're trying and we sometimes will mess up and they're okay with that. So thank you for asking. I am a work in progress.
Kate: And it all comes back too that willingness to repair. Yes. To be curious. Yes. To keep learning, you know, that's wonderful.
Valerie: Yes. When they came out, they were struggling at the dinner table. And I just said, are you trying to come out? Awww. Even so, it was still a shock because we didn't see it coming.
But we stopped and we thought, hmm, what would Jesus do? Because we know how some churches are, people have their views on this. I'm not here to say one is right over the other. Jesus calls us to love. And so that's what we have done. We have just loved this child, continue to love them. They will always be our child. Their welfare will always be first and foremost, a priority in our lives.
We just love our child, support them. Even though they're choosing not to walk in a relationship with a higher power, that's their choice, but we're still being respectful of each other and still sharing and showing love to one another.
Kate: [00:36:25] Beautiful. I have chills. I've got chills from that. Yeah. Thank you.
Communication Strategies for a Non-Speaking Child
Can I take it again in another direction that's also about communication? You did mention that your older child uses a communication device. And I'm wondering how that looks because we do have a lot of listeners whose children are non speaking.
And I think sometimes they feel alienated by these sorts of conversations that we can have, even though yes, it's challenging to raise any kid with a disability in a ableist world. It is especially, in some ways, challenging to raise a child who can't tell you when something hurts, can't tell you how they feel, can't say I love you. Anyway, I'm going to shut up and listen to you.
Valerie: [00:37:12] I agree. It is challenging. And for us, when Melody Ann was younger, so that's our oldest daughter with cerebral palsy, G tube fed, wheelchair user and communication device. So when she was younger, somebody came to our home. I believe she was a speech language pathologist and she was doing some assessments with Melody Ann.
And she said, there's no reason why this child can't use a computer. Melody Ann was three at the time. I'm just like, Okay. Then how do we make that work?
So what that gave to us, it birthed the hope that our child would be able to communicate. So we started off with low tech stuff. And as most people will so pack pictures and a book and we created a binder with different pictures. We did a lot of partner assisted, and we set her up through all of that. And we went through the different phases to be able to use a communication device. So she has like a tablet now, almost like it's not an iPad. It's bigger and more robust than an iPad. And she has a wheelchair tray with two switches on it. She has enough dexterity with her hand, like her fist. So she has two buttons that she can push to help her.
Try to picture this, you've got a screen with a whole bunch of little, um, squares on it, and each of those squares has a symbol on it, or a word, and some of those squares will open up to another page.
Um, so that's what Melody Anne is using is a menu. Yes. And so she has, it's an accent that she's using right now, uh, with two steps scanning that she's doing. So what it does is it'll bring up a page with all these squares on it and then it will scan a quarter. Of the page, and then she'll hit a button and it will move to the next hit a button.
And then within those quarters, those sections are rows and then she can hit a row and then she can actually then go cell by cell. And that's how she kind of is able to create sentences and to be able to share her communication. So using a communication device for her has been huge.
We live in Canada and we moved to another province and they weren't able to support her using a communication device. So we ended up coming back to Alberta where they have a huge amount of funding to help with this kind of stuff. So we're very blessed.
Kate: I just want to highlight that. That you moved away and then you realized that she wasn't getting the support, so you moved back. And that is the kind of thing that parents of kids with disabilities have to do all the time that nobody acknowledges.
Valerie: Thank you. And it was, for us, it was a bit of a no brainer because Melody Ann was given a year to live. When she got past that year mark. Ooh, like the weight fell off and it's like, we need to make sure this child has the best life.
And as she was growing through her younger years, we were realizing that, wow, she's got some intelligence we can work with. For us, when she wasn't getting what she needed in, um, the province that we were in. It was like, we need to get back. We need to get back before we lose the window of opportunity for her to be able to use a communication device.
We were fortunate in the city that we live in, there's a specialized school And there was a teacher who had a class for kids using communication devices or some type of communication tool. So she was able to be a part of that class. And what was interesting was she didn't do anything for about a year.
Little did we know she was learning where everything was. So she really wasn't saying a whole lot to us, but what she was doing was memorizing. Cause as I mentioned earlier, like one button would open up to another page, say for instance, she would hit a weather and then that would open up to another page, which would have snow, rain and all the different precipitation type things, sunshine.
So there's so many pages on this device, but she was learning where everything was. So when she did start speaking, she didn't talk in big sentences, but she was able to get her needs known. And a lot of it was requests. I want, I want, I want. Then over time, we've been able to help her graduate utilizing feelings.
So we did, quite a ton of time on having a conversation. So Melody when we have a conversation, we ask people questions. Who, what, when, how. We would model those kind of conversations with her. So when she came home from school, we want to know what happened at school.
So we would go through that framework. So we have been very blessed that she wants to communicate, often it's her needs, what she wants. But she's, um, and then we had to kind of help her understand about feelings. Like, well, can you tell us how you're feeling? And so recently I was just mentioning to someone else that she was able to articulate that she was frustrated about something, which was huge.
Yeah. And then she was able to say why she was frustrated. And the cool thing was, it was something that was an easy fix. So we just were like, yeah, so even though it didn't happen overnight, keep pouring into your child that's using whatever type of means of communicating that they can use. So for some people, it might be an iPad touch chat.
There's different types of things for some. It might be just a button. And Melody Ann did have a button where we did, I remember we did brown bear, brown bear. And so she, because it's so repetitive, when we read the story, when she hit the button, it said brown bear, brown bear, and then I would read the rest of it.
But again, it's just utilizing different ways of communicating with our children and finding ways that they can communicate and not ever, ever underestimating what they can do. Yeah. Thanks for that. Yeah.
Augmentative and Alternative Communication Camp
And I just wanted to say just a little plug because of Melody Anne, we have a AAC, so Alternative Augmentative Communication Camp that we started here in the province of Alberta because there was nothing here and when Melody Ann was younger, her, one of her speech language pathologists said, Oh, I've just been to this conference in the States and this person that gave a presentation, she actually runs a camp and it was in Idaho. So she said, you should probably go.
Cause it was like 75. I'm like, wow, that's cheap. But like, Idaho's a long way from us anyway. But then I thought, you know, I want Melody Ann to have a camp experience. Yeah. North American kids. That's what they do. When I grew up in England, we didn't, and we didn't have the money to go to camp. And there wasn't.
It wasn't such a big thing, but when I came to North America, I realized a lot of kids go to camp and I wanted Melody Ann to have that camp experience. So we went, we drove the two days to Idaho to go to camp and I was there with my notebook taking tons of notes because I'm thinking we need to have one of these in Alberta.
And we were very blessed. The camp director, Anne, she, we asked her, you know, is it, could we, do you think we could do this in Alberta? And she's like, I don't see why not. I said, would you help us? And she did. So in 2016, we had our first camp for kids using communication devices here in Alberta. And we did a family style one because it's not just the child using the communication device, it's a family thing because it's something that they need to be using all the time.
So we had a sibling section, we had parents where they could kind of network with each other, we gave, and we still do, like teachings for the parents, and then we have Activities where everyone's together. So we've been running this camp now since 2016. Now I have to say I am the parent voice, so I love getting things going.
And we were blessed that we have, we actually went with the same model that they have in Idaho. But we adapted a little bit because we did an overnight camp initially. And so we have where we partnered with the University of Alberta and the speech language pathology department. And it just so happened that the one of the professors there knew the professor who was helping out with the one in Idaho.
So that connection was made for us. And so it's a win win situation. So the way the camp runs is that we have the camper. So the child that's using a communication device, they have a one on one student who is a speech language pathology student. And then we've been blessed with professionals who oversee the students with the campers.
And so it's been a win win situation and we've been running it even through COVID, we pivoted to online.
Because Melody Ann has medical needs, I was not ready to just send my kid off to a camp. So this is why we created the camp that we did. And so that way the families can bring a caregiver who knows the child well. And we do encourage the parents to be there as well, so the child is supported. We've had a kid on a ventilator one year.
Kate: That is fantastic. That's so great. Thank you so much for sharing that.
Acceptance, Connection and Self-Care
[00:46:04] So Valerie, what do you most want to be remembered for?
Valerie: I love to see people reach their potential. So if that means I need to connect you with so and so, I think this would be a great fit for you. Because I want people to succeed.
I want people to have the resources that they need. I want people to shine, to be the best that they are meant to be.
Kate: [00:46:29] What's your vision for the world?
Valerie: I would love to see people accept people for who they are. I would love to see prejudice gone. I was raised in a white community, I'm a Caribbean background.
And so I would love to see prejudice gone. I grew up with prejudice. My first serious boyfriend, his grandmother said, you're not dating that black girl, are you? Well, actually grandma, I am.
Not that I've been targeted per se, I've been blessed in the fact that I have got along with most people and even though I was in a white neighborhood, we were respected as a family, which was lovely. But now that I've had a child with a disability, my firstborn has a visible disability, just watching how people stared, watching how people ignored, watching how people just pretended they didn't see us, that is hurtful.
[00:47:29] And now I have my youngest who has a disability that's not visible and just seeing how they had gone through school and how hard it was for them to feel like they were included, to feel like they were a part of the group, to feel like they fit in. I would love to see a world where we just accepted people just as they are.
Kate: Yeah. One of the very first things you said was your child was not being invited to birthday parties. And I know that resonates with so many parents. I'll try not to start crying right now, but it's, it's tender, it's tender, and we so want that inclusion for ourselves and our kids.
Unfortunately, nobody's going to swoop in and change these things. We have to do it.
Valerie: Kate, I'm sure you're experiencing the same thing, as I'm moving through life and my journey with my children. There are so many people with some form of disability, however that might look so why does The norm have to be the norm when it really isn't.
And I just feel that, like you say, we need to change what society deems normal, because there really is no normal.
Kate: There's no such thing. I would say it's like a patriarchal capitalist structure that was created to keep people in a hierarchy. But that might be another podcast. It was created to hoard power and resources. And All these myths were created around that of race and of disability and honestly, everyone, if they're lucky enough to live long enough, they're going to become disabled at some point.
[00:49:11] Is there anything that you'd like to hone in on as your core values? Is it the SHINE principle?
Valerie: The shine principle and along with that being true to yourself. Because when we are taking care of ourselves, that's when we can be the best at being true to ourselves. We will have our bodies functioning the way they need to because we're taking care of them.
We're putting good nutrition into them. We're moving them. We can have more clarity so that we can think on a deeper level. We can relate on a more emotional level. So if we can take care of ourselves, if we adopt these principles, these shine principles, we can then be powerful in making the change that we need to make, not only in the lives of those that we have a sphere of influence in, our family, our community, but also in the world. I love how you've made me think about what is the bigger picture here? The bigger picture is to change how the world views kids like ours.
Kate: Yeah. And maybe themselves as well.
Valerie: Yes. Yes.
Inspiration and Coping Mechanisms
Kate: [00:50:15] So that actually circles me back to a question I had right at the beginning, which is one of your shine, the I inspiration.
What about those days when we don't feel like being an inspiration? We're just I don't know, having a bad day, being a grumpy parent, not being our best selves. What about when we can't be an inspiration?
Valerie: I have those days too. I have those days too. My brother and I tend to resonate well and he's my go to. He reminds me of what has been achieved. He reminds me of why I'm here. He reminds me of what I have yet to do. So I would suggest to those listening, when you have those moments, look back and reflect.
And I'm thinking about, I'm just thinking of some Bible texts that are coming up right now. And one of the things that's often said is remember. And I think we tend to be running through life. Well, that's been me. Racing through life that we forget to take the time to remember.
Remember how you've been led in the past. Remember what impressions you have left. Remember where you've been an inspiration. Remember what it is that you've done. Remember what you've achieved. And just be encouraged by that and not just yourself, I'm relating this to my children as well.
When I'm expecting too much, remember where they've come from, remember what they have achieved, and just remember to love them where they're at right now.
Kate: Yeah. I try to remind myself not to compare my child to other kids their age, but to compare him to a year ago or five years ago or even a month ago, to see what has evolved and what has changed.
What you were saying about your brother reminded me of a practice that I do, touching the earth meditation, which is a Buddhist practice, touching the earth and asking the earth to reflect back my inherent goodness. And some people do use like someone who knows them so well that brother or sister or best friend to reflect back that inherent goodness and remind us of that and we need that. We all need that touchstone. Nature for me is it. i can ask for help when I'm pushed to my brink, when I'm challenged, when I do not feel like being inspiring today.
Valerie: Love that, love that.
Joyful Parenting Memories and Accomplishments
Kate: [00:52:58] How about we end with this question? What parenting memory brings you joy?
Oh, I'm going to try not to cry. My oldest, Melody Ann, as I mentioned, is in a wheelchair, nonverbal, limited movements, just has gross movements, doesn't have any fine motor movements. When I was carrying her, my dreams for her were to be a dancer. I used to be a dancer. So I had all these dreams for Melody Ann.
And do figure skating because I never had an opportunity to do that. I grew up in England. We didn't have ponds that froze because it doesn't get that cold.
And when we recognized the severity of the disability, it just kind of dropped off my radar. I just thought it was never going to happen. And at the specialized school that I mentioned earlier, where Melody Ann was using a communication device, a dance teacher came in and she worked with all the different classes and had them perform dances and skits and things like that for the Christmas party. So I remember thinking, I'm going to contact that dancer and just ask if she would be interested in doing some private work in our home with Melody Ann. And I thought it would be a fun thing for my two children to do together. So she agreed to do that.
So Talisa worked with our family for years and she had a dance studio so she always put on a big performance and so Melody Ann got to do a solo to a little kind of nursery rhyme type thing called Snowflake.
I got to, I got to see her get dressed up and my mom made a little skirt like of netting. I was just looking at her picture the other day of her dressed to go on stage and to do this dance with her dance teacher. That was a proud mama moment for me because I never believed that she would ever perform.
And this is a child that loves to perform. She's gone on to do different performances with this dance company and she has just loved every moment of it. And she just gets so excited to perform. So that was a proud mama moment for me.
Kate: [00:55:00] You got me going. You're giving me chills again. Oh, thank you so much. That is so beautiful. Valerie, I know listeners are going to want your book.
The S.H.I.N.E. Principle: The Special Needs Mom's Path to Strength, Hope, and Happiness
I have loved this conversation. There's so much here that's just absolute treasure for parents. Thank you so much.
Valerie: You are so very welcome and thank you for inviting me to be a guest and continue on the amazing work that you're doing, Kate. Thanks, Valerie.
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