January 20, 2022
Cindy Lopez:
Welcome. My name is Cindy Lopez, the host of this CHC podcast, Voices of Compassion. We hope you find a little courage, feel connected and experience compassion every time you listen. Love and compassion are necessary in parenting and seem to be especially needed if you’re parenting a twice exceptional or 2e child. A child who is twice exceptional is gifted and has some identified challenges. This combination of giftedness and challenges creates a confusing picture for parents and educators. It can be difficult to see the signs of 2e because it really looks different in every child. Their strengths can mask their challenges and their challenges can mask their strengths. So today we talk with Callie Turk, a parent of a 2e child, and Dr. Vivien Keil neuropsychologist about the journey of understanding and parenting this unique combination of gifts and challenges. Welcome Callie and Vivien.
Dr. Vivien Keil:
Thanks so much for having me today, Cindy. So my clinical background and expertise is really in the field of neuropsychology, which means that what I do with kids and teens is basically do evaluations to help figure out what their learning profile is, what their strengths and weaknesses are, and I think what’s unique about the twice exceptional population is that they’re a really mixed group of kids who have really, really unique profiles. And so, what I really value about working with these kids and families is trying to help figure out what is that unique profile and how do we work with the full team of people like the family, teachers, everybody who’s involved to help come up with a plan that really helps that child or teen reach their full potential. So happy to be here and particularly happy to join with Callie, who has a lot of experience on the parent journey side of things.
Callie Turk:
Thank you Vivien. I am too beyond excited to be on a podcast with you. My name is Callie Turk and I have three children. One of whom is twice exceptional and went through the evaluation process with Vivien, and she made such a profound difference in our lives, and I am so grateful to CHC for having people on their team like Vivien who can help us understand our children. My journey with my daughter has led me to found an organization called REEL based here in Silicon valley to help parents and teachers and educators understand these kids better, and I know we wouldn’t be in the position we are with our daughter without having gone through the assessment and evaluation and ongoing support that Vivien gave to our family. So I’m really excited to get to talk about the journey that we’ve had as a family and the value of going through the assessment process in terms of really understanding how best to help our own children.
Cindy Lopez:
Yeah thank you so much both of you for being here. It’s such a great opportunity to have parent and clinician together. So, let’s talk about what does twice exceptional really mean?
Dr. Vivien Keil:
You’ll hear twice exceptional abbreviated as 2e and so you’ll hear me use that quite a bit and what 2e really means is that there are both really exceptional strengths in a child’s profile, oftentimes that has to do with their reasoning ability, their intellectual capacity and then there are also simultaneously areas of significant weakness that are impairing or cause difficulties for that particular child, what those particular weaknesses look like are completely different from child to child. So for example, it could be a specific diagnosis like you may have heard of ADHD [attention deficit, hyperactivity disorder], autism spectrum disorders or ASD, or a reading disorder like dyslexia or it could be something less specific without a particular diagnosis like for example, weaknesses in processing speed or executive functioning, or it could also refer to sort of an emotional or behavioral profile that makes things challenging, like an anxiety disorder or something of that nature.
Callie Turk:
Vivien covered it so well. I think one of the big things to understand about twice exceptional kids and people is that their strengths often mask their challenges so that people in their lives may assume that they’re just lazy or not trying hard enough to succeed or their challenges can mask their strengths and then only their deficits are seen and no one is taking the time to understand what they can do. So they are often some of the most confusing children to work with because they may not fit the model of either a higher achiever or they may not be performing so poorly in school that they qualify for special education services and a lot of times they’re just so frustrated with this wide variance in difference that they may be acting out and then that shows up as behavioral difficulties. So I see them as the students that are most likely to fall through the cracks because they don’t seem to fit any of the categories that we might give to students normally like gifted or normally developing or special education qualifier, and they can be all of those at the same time.
Dr. Vivien Keil:
Yes, such a good point, Callie, like there is a complexity to these profiles and these kids and teens because of the fact that we like to put things in buckets, right, to help try and understand, but they don’t fit cleanly into these predetermined buckets that we’ve created, and so you really have to look at each individual child and their unique profile, and that’s also why the evaluation process with 2e kids is particularly comprehensive and requires a lot of consultation with other professionals who specialize in child development. So I’ve never made a diagnosis or identified a child or a teen as 2e without consulting with other people on my clinical team, whether that be educational specialists or teachers or occupational therapists. Their profiles are sufficiently complex and so you can see how if they’re complicated from a clinical perspective how incredibly complex are they for parents to try and sort of understand, and how do I support my child best when their profile seems kind of all over the place?
Cindy Lopez:
Yeah and let alone for the children themselves, for the students. How did they perceive themselves, right, it’s confusing for them too. So, Callie as a parent, just thinking about your journey, what did you observe in your child that led you to consider an assessment? Were you thinking twice exceptional or something else or you didn’t know?
Callie Turk:
Well, this is not like a short answer, probably because she is such a complicated child, but from the time my daughter was in preschool, friends and family had noted that she was really an advanced reader and writer and such a deep thinker, and people were always commenting on like, this is a kid who can change the world, and we just thought we know so many bright kids, so we didn’t think that much about it. She was just a great kid and we enjoyed having her in our life, and she was a child we noticed who mostly preferred to play alone and do projects that just interested her. So even in preschool, we’d find her on her own in a room without other kids on most days and the teacher’s just said, oh, she’s introverted you know, she likes being by herself and we all kind of went along with it, and it’s really only in retrospect that I can see all the clues were really lining up and that perhaps I should have observed earlier that she could have really benefited from an evaluation, but once she started kindergarten, she was really struggling with a very rigid teacher who would like have all the kids work on the same kindergarten level curriculum and projects, despite what their individual capabilities were, and our daughter was incredibly unhappy, but we knew when she got to first grade, she’d have a kinder teacher and we thought she’d do a lot better, and she did. So we kind of just wrote it out for a little bit, but then in first grade she did start complaining about humming and whistling and she was having a really hard time keeping her cool when these sounds were happening in the classroom and at home, at the same time, she was writing and reading like crazy. So no one thought to make anything of it and things really didn’t come to a head the first time until second grade and that’s when we started noticing she was picking her own skin and it was clearly a sign of anxiety. She was clearly not feeling good at school. Even though everyone kept telling us how advanced she was, we started thinking, okay, maybe she really is kind of quote unquote “gifted,” which is not something that’s commonly assessed for in our geographic area, but we took her for a private assessment and she was indeed like a very gifted young person from an IQ perspective and so at that point we were kind of told, you know, like just change her school environment because she’s probably anxious in a school that’s not meeting her needs.
So we did move her to a school for gifted and creative kids in fourth grade and that really did seem to solve things for a few years. She made more friends, she seemed pretty happy, but by the middle of sixth grade, kind of the same problems were cropping up again. She was having a difficult time regulating her responses when people would hum and whistle at school, and she was starting to alienate herself from her peers at a time when all the other kids were kind of running towards peers, she was sort of running away from all of them. We decided we did need to know once and for all if there was a root cause of her anxiety and we talked to her therapist, and she recommended that we reach out to Dr. Vivien Keil who is here with us today, and she said, this is a neuro-psych who really understands kids who are both gifted and are having learning and behavioral challenges. So I’d heard of twice exceptional before, but this was the first time like we really started to dive deep into whether this was the description that fit Katie’s experience best and going in to the assessment we were really open to whatever Dr. Keil found, you know, we just really wanted to help Katie feel and function better because she was so unhappy, and it was just breaking our hearts.
So I think some people will shy away from pursuing these assessments because they don’t want their kid to have a label, but I’ve worked on a blog series with some local 2e teens called The Living and Learning 2e blog series, and one of them mentioned to me how valuable it was for them to have the assessment and to learn that they had ADHD because they were actually already being labeled as lazy and stubborn and difficult and so it was really helpful to go and have the assessment and get a label that actually explained her lived experience, and I think that’s the way we felt about it with Katie is I didn’t know what was going to come out of it. I knew twice exceptional isn’t in the DSM-5, so it wasn’t going to be an official diagnosis, but I wanted to work with someone who understood that a child could be both very, very bright and also have underlying and maybe confusing challenges, and I was feeling like we had really hit the goldmine when we met Vivien.
Cindy Lopez:
It sounds like the anxiety is really what kind of pushed you toward, we got to figure this out because your daughter was just dealing with the anxiety and some ways that were coming out that you were starting to see.
Callie Turk:
Definitely, definitely. It was wanting to understand that what was behind the anxiety, because we just couldn’t know if we were pulling the right levers or not to support Katie.
Mike:
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Cindy Lopez:
So, Vivien Callie referenced the assessment with you. What is the evaluation experience like in this situation? What kinds of things are included?
Dr. Vivien Keil:
Really good question because I think oftentimes parents think what am I stepping into and what am I signing up for and what is this experience going to be like for my child? Is it going to be stressful for them? Because of course we don’t want to add to their stress. So the goal of an evaluation and really the approach with the actual child and teen should be one of working together to find out what’s harder for you, and what’s easier for you, what your strengths and weaknesses are, and really for the purposes of helping the adults in your life figure out how they can best support you.
So, if we find out you have a particular learning style, some kids tend to be better visual learners over verbal learning or vice versa. We can then use that information to feed that back to your teachers and your parents because they can work with you differently to play to your strengths, essentially. And so that’s how I kind of approach when I explain an evaluation to a child or a teen that I’m working with, that’s my approach in language that I use with them.
Practically in terms of what that looks like is a ton of activities in a one-to-one format with me in the office doing anything from activities that seem like sort of brain teasers and solving visual puzzles. Also to like kind of academic tasks that will feel very school-like potentially doing like reading, writing, math activities, doing memory challenges or memory games. So the nice thing is since it’s in this one-to-one environment I can also pepper in lots of questions around social situations and overall emotional wellbeing and behavioral functioning and things like that, casually within the context of all these tasks that you’re doing. So it should feel pretty comfortable for the child or teen and also we can take as many breaks as we need to. We talk about things that they like to do. So we get to talk about their interests as well, which tends to appeal really well to the gifted crew in particular. So if they’re really into Anime or calligraphy or anything like that, it’s an opportunity for them to share their strengths and their interests with a new adult in their life. So it should be a pretty painless process.
Cindy Lopez:
I also wonder how the child feels in this situation. Callie is there anything that you might want to share with us about how your child felt about the testing and what her experience was?
Callie Turk:
So Katie didn’t seem to mind the testing at all. I think she was a little apprehensive about the first meeting with Vivien, you know, she didn’t know what Vivien would think of her, and she was wondering how that would go, but she went very willingly and honestly, she really enjoyed all the snacks at the break. I asked her just yesterday, like what did she remember about it and she remembers the snacks. So that was a very helpful for helping her feel calm and welcome, and Dr. Keil established a kind and caring and warm and respectful relationship off the bat so that made her feel comfortable and Vivien also came to observe Katie at school and you felt like you were getting like a nice well-rounded viewpoint of who Katie is as a person, but Katie didn’t even notice that Vivien was there which I think speaks volumes about Katie’s ultimate diagnosis.
Cindy Lopez:
That’s amazing. I love that she loved the food girl after my own heart. Callie, so you talked a little bit about Katie’s experience in the testing and then what about the results? What went through your mind when you first heard the results of the testing and those conversations with Dr. Keil?
Callie Turk:
Well, so just to be clear, she was diagnosed as autistic and having general anxiety and Dr. Keil noted that Katie was also highly intelligent and twice exceptional, which not all neuropsychs will do because like I said before, twice exceptionality isn’t a specifically official diagnosis. So it is important as a parent to find someone who will work with you on that and understand that and be willing to document that if possible.
The first thing that I remember thinking is why didn’t we know this before, what is wrong with us as parents like this has been part of Katie’s life and we didn’t know, and I was just so sad for Katie that she had been misunderstood for so long, especially by us because I mean, we just love her to pieces you know, and I remember that Dr. Keil was very gentle about it, and she said something along these lines, like don’t beat yourself up that you didn’t know, this is one of the toughest cases I’ve seen. It’s very subtle, and you’ve been working with Katie and providing all the right supports for her already, and I don’t want you to feel badly about this. This was after she put the tissue box in front of us, because I think she knew it was going to be hard. Finding out the diagnosis was difficult, but it definitely shifted my perspective right away. So many of the challenges that Katie had been having, and so much of our own confusion, it all just kind of clicked into place. We’d really wondered why our daughter couldn’t manage like certain things that other kids can manage like foods and sounds, certain big feelings, some school assignments, she just wasn’t a go along to get along kind of kid and having this information about her really helped put everything into context. So I understood better right away what her experience was like.
Cindy Lopez:
For parents who are listening into this conversation displays that you are trying to figure out what’s happening with your child and trying to support your child in the best way that you can. So as we think about specifically a 2e diagnosis what’s important for parents to understand about that Vivien and what recommendations do you give parents?
Dr. Vivien Keil:
First and foremost, keeping in mind that the 2e designation or identification or label, it does not change the child in front of you. They are who they are, and they were that person before they came in for the evaluation, and they are still the same person. Every child and arguably grown up as well, I really see people as kind of a constellation of strengths and weaknesses, right? We all have them, and so a 2e profile very similarly, it’s a constellation of strengths and weaknesses, and so keeping that sort of whole child bigger picture in mind. I think can help keep perspective when it’s very natural as a parent, I get it, I’ve done this with my own kids, when somebody says your kid needs to work on something, or your kid has a weakness, my brain really automatically does shift to okay, how do I help them get over this weakness or strengthen their weakness? And so I have this very natural like deficits orientation that comes with my kids because I just, I want to help them. I think this is true for all parents, but especially with this like 2e profile where you have these really, really high strengths in these really intense passions. It’s very easy to lose sight of that in wanting to help some of their weaker areas. So don’t take away from their strengths and their loves and their passions in order to try and help the weak spots. You need to let them shine in their strength areas and continue to encourage them while also providing some scaffolding in their weaker spots.
Cindy Lopez:
Kind of piggybacking on what you’re just talking about Vivien, what are your thoughts about how to talk to your child about the outcome of testing? Do you tell them the diagnosis and is this a forever thing?
Dr. Vivien Keil:
So certainly developmental stage and understanding matters a great deal. So what you tell a seven-year-old is going to vastly differ from what you tell a 14 year old, right? And if you need some guidance on that I would highly recommend leaning on the clinician who’s doing the evaluation to help you understand sort of like where is my child’s maturity level. How would you recommend communicating this to them? Are you as the clinician going to communicate it? Will you do it with me the parent? Do you recommend starting with a therapist? If the therapist is involved, there are a number of different ways to approach the communication. I would say no matter what the developmental stage though, the important thing is that there is some communication around like why are we doing this evaluation and what did the doctor or whoever whatever the verbiage that you’ve used, what did they find in the evaluation? Because if you don’t talk about it, the thing about children is that they’ll oftentimes fill in the blank with things that are false, right?
So what I would say is that talking to kids about why we went to go see this person where we did the evaluation and her job was to figure out kind of what your strengths and weaknesses are. Here’s what we found and then you’re going to talk about those strengths and those areas that are harder for them. They already know that because they’ve been living that experience. So if I tell a child who has learning issues and attentional issues that they have ADHD, whether I label it as such, or just talk about attentional weaknesses, I can tell you I’ve never had a kid go, really I had no idea because of have their lived experience, right. They know better than me and better than their parents what that experience is like, they’ve been getting feedback from their environments since they were born about things that they need to work on or things that are hard for them. So I think getting back to Callie’s earlier point, and the blogs that she’s a part of, and that teens experience of wow, getting that label of ADHD was actually really, really helpful. I think more often than not, that is very much the story that we hear from kids, teens and families, because in the absence of a label or a diagnosis, or just some understanding kids blame themselves. They feel different, they feel deficient, they feel like there is something wrong with them, and so to actually take that away and say, no, there’s nothing wrong. I know you’re not lazy. I know you’re not unmotivated. I know you are trying your absolute best. This has to do with how your brain is wired, and so that process of explanation I think can be really powerful and therapeutic for kids and their families.
Cindy Lopez:
In my 30 plus years of working in education and about half of that time with kids with learning differences, there’s a sense of relief that comes when they’re like, oh, this is not just me and I think it provides relief and some explanation. So Callie, I’m wondering how that worked with you in your situation. Did you talk with your daughter about it or not? What did that look like?
Callie Turk:
Just to go back to what the Vivien said, we did talk to Vivien about how we should handle things with Katie and came up with a plan. We knew that Katie wasn’t someone who wanted to be talked to a lot. She does not to get a lot of verbal information thrown at her at once and especially at that time in her life, when she was just 12, like just too much external verbal input was really overwhelming for her. So instead we sat down and wrote a letter to her and then we sat with her while she read it. And in the letter, we really emphasized her strengths and we let her know why some things were a little more challenging for her than for other kids, because she was definitely comparing herself to other kids at her school, and we talked about some of the advantages too of having the information and some of the strengths that can come with autism in terms of like being able to focus and having strong passions and interests. So I don’t know if it actually worked the way I hoped it would. I think, I hope that Katie would read the letter and then we would talk about it, but really, I’m not sure that she really absorbed all the positive points that I was trying to make, but it did seem like that was the best way to communicate with her at that time. We’re three and a half years into this now and we have a lot more conversations about her perspectives and point of view because she definitely has done her own research and developed her own way of thinking about her identity and how she wants to represent herself and represent people with autism.
Cindy Lopez:
I really appreciate how you stepped back for a minute and thought what’s the best way to share this information with Katie and in a way that really works for her.
Dr. Vivien Keil:
I think that story Callie is such a remarkable kind of example of how you lean into what your child needs and what their profile is and how do I find a way to communicate this information that’s more likely to be conducive to her learning and her better understanding herself. It’s such a great example of the different ways you can share information with your child, and I also think parents put an immense amount of pressure on themselves in getting it right which is a horrible place to be as a parent because parenting is not that simple. You can’t just get it right unfortunately, as much as we want and try to do so and so thinking of it as like truly it is a seed that you’re planting, it’s the beginning of a conversation that is very much a lifelong conversation, and so Callie’s experience they’ve had more conversations about it and it’s taken various forms, but what’s great about that example is that basically that was the start of the conversation that will now continue on because you’ve set the foundation for this to be a continuing conversation.
Cindy Lopez:
Yeah
Callie Turk:
Yeah that makes Yeah that makes a lot of sense.
So Callie I’m also wondering if your thinking changed about the best ways to support your child once you had all this information.
Callie Turk:
I immediately had this better and more grounded context of Katie’s challenges. I knew what a lot of her strengths were before, but I didn’t really understand her challenges. So, you know, it was incredibly helpful to get that information. It also helped me to advocate for her more effectively with her school because I knew what she needed in the school environment to have a better chance for success.
I would say the downside in terms of thinking about how we could support her is that we got this very long list of books and activities and therapies to pursue. Unfortunately, I’m a very type-A person. So I started at the top and worked my way to the bottom, and I made a to-do list for myself and for Katie and honestly, I spent the first six to nine months after her diagnosis trying to get as many resources pulled together as I could. I had her meet with a lot of people and try a range of different therapies and approaches, and I think that’s because I felt like we’d lost so much time and that we needed to get moving, but it really was not a great approach because I overwhelmed my daughter and I overwhelmed myself, and I think I truly set up a situation where she started to feel that she was a little broken, and I really wish I’d stepped back and seen that even bigger picture that like Katie was this very bright person who also happens to be autistic, she has so many strengths, and she was also going through puberty. So like, if I could have only seen all of that in context, like everything about her was changing and on high alert, and I just felt like I invested too much in trying to provide all these supports, and like you guys were talking about before, I didn’t invest enough in her strengths and abilities off the bat, and I wish I had done that. So I do think that took a toll on her self-esteem that I wish I could erase, but like we’re really working on it and it’s a lot better, and I learned something from an online Facebook group called Autistic Typing that has changed my perspective for good on all of that. Now, when other people approach me about having a 2e child they’ve just gotten some kind of diagnosis, I send them this little writeup, the gist of which is like, take your time and this is exactly what Vivien was saying, like remember your child is the same awesome person they’ve always been, learn yourself, research before you take action. You don’t have to change things overnight and so this person calls it, like taking an autism moon, kind of like a baby moon where you take some time before you jump right in, and I think that is a much healthier approach and it’s something I wish I had known before we got the diagnosis.
Cindy Lopez:
That’s so important for parents to hear. I would probably be the same as you Callie, like give me my list, how can I help? So Dr. Keil what advice do you have for parents who are thinking that the child might need testing and maybe even advice for parents of 2e kids?
Dr. Vivien Keil:
I think to begin reach out to someone and find out more information. So whether that be reaching out for a consultation with a clinician who has a private practice, and they focus on twice exceptionality or reaching out to a place like CHC to find out more about the evaluation process or any of these online communities.
I think there are so many online resources and communities around 2e that that’s a good starting place as well. So just finding more information and finding some allies and supports in this space. This is my very practical suggestion: if you’re considering getting an evaluation, just get on some interest lists/wait lists right now because the wait is several months out, pretty much wherever you go across the country.
Many of you may have heard that just this fall pediatricians and psychiatrists have declared a mental health emergency for youth and the surgeon general said the same this month and so what that means is that our mental health system and evaluations are a part of that is very strapped for resources and everyone is really busy. So the worst thing that could happen is you get on a wait list a few months from now, they call and say, you’re clear, would you like to come in, and you can decline at that point. So planning ahead and getting yourself ready to potentially take that step if that’s something that you decide to do, and then I think my other suggestion is for your child, do what you can to help them find their tribe sooner rather than later. So the thing about that 2e profile is that they are very different from the masses and from many of their peers, and so they tend to have a hard time fitting in and they really struggle to find a peer connection that is meaningful to them. So the sooner that you can get them around similar types of kids, the more likely it is that they’ll be able to form a meaningful connection or two that will hopefully kind of carry them forward and be a really nice support because that power of like having a connection with somebody who gets you is incredibly important for kids and especially teens. So putting them in situations where they can meet those people is really important.
Cindy Lopez:
Thank you Callie, what has been your big takeaway from this whole experience?
Callie Turk:
I think on a personal level it’s to love your kid with your whole heart and lead with love over fear because I think my fear of the diagnosis really clouded my judgment, and I think now I’m in a place where I lead more with love like Katie has really blossomed in so many ways, and when I let her stretch and show us what she can do, like she can just do so many more things than we thought might be possible at this stage. She’s able to manage all of her own schoolwork, she really wants to be a great student, she’s doing a lot of volunteer activities. There’s just so many things that Katie is capable of that you know, we want to nurture and support and help her keep growing.
I think our experience with all of this showed us really up front and in microscopic detail that our schools, both public and private, because we’ve been in both are not really designed to identify or understand these kids. It’s not that they don’t want to. It’s just that it’s not all that common to work with these kids. So no one’s getting training or preparation to really identify and help these kids. So girls in particular are really misunderstood, which is one of the reasons Katie was diagnosed so late and you know, that’s really common like girls tend to get diagnosed later or they have a misdiagnosis. So there’s a lot of work that we need to do to raise awareness with parents and educators about these kinds of kids, because it’s very confusing to work with kids who have such diverse strengths and challenges and so that’s why I co-founded our local advocacy group to build those bridges between parents and educators because we need to provide better support systems, and we really need to find better ways to shepherd these kids to adulthood, without them feeling broken. Instead we want them to feel like very empowered to be themselves completely and contribute their unique sense of greatness to our world because they have so much to offer, and I think in the end as a parent, it’s really just coming to embrace who your child is as a person completely and helping them develop tools and strategies so that they feel like they can participate fully in their lives and just help them lead with love in the world as much as possible too.
Cindy Lopez:
I love the leading with love, and I just said this in a recent podcast episode: love and compassion trumps everything else. So if you start there, you’re going to probably end up in a little bit better place. So thank you both Vivien and Callie and to our listeners thank you also for joining us and we hope that you’ll listen in again next week.
Dr. Vivien Keil:
Thank you for doing the work the work that you do.
Cindy Lopez:
Visit us online at podcast.chconline.org. Make sure to subscribe to Voices of Compassion so you never miss an episode and we’d love it if you’d leave us a rating and review. Have a question? Send us an email or a voice memo at podcasts@chconline.org. We’re here for you when you need us.
