Parenting a Child with a Rare Diagnosis, with John Hiski Ridge | EDB 253
John Hiski Ridge discusses what he has learned racing a child with a rare diagnosis – 22q.
(VIDEO – 30 mins) John Hiski Ridge is a professional writer, as well as a Colorado attorney. He has published articles on many topics, including diversity in the workplace, leadership, legal writing, and mountain climbing. He is a graduate of Boston College, where he earned both his J.D. and a Ph.D. in philosophy. Importantly, John is the author of “Maggie and Me,” a blog that discusses issues facing young adults with disabilities, and also teaches philosophy and science in a manner that is accessible to high school and junior high school students.
Maggie and Me can be read on John’s website: johnhiskiridge.com
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HACKIE REITMAN, MD (HR):
Hi, I’m Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we have coming from way out west, John Hiski Ridge. Very interesting guy, and we’re gonna introduce him to you right now. In fact, even better, John Ridge, why don’t you introduce yourself to our audience?
JOHN HISKI RIDGE (JHR):
I am John. And I live just outside of Denver in a college town, Fort Collins, Colorado, home of CSU. And I work. I’m a state local tax lawyer, and I work downtown Denver. But more importantly, I also do a lot of writing. So I’ve published 65, 70 articles by now but I also have a blog called Maggie and Me, on my website, JohnHiskiRidge.com, and the blog is designed to help young adults who are neurologically diverse or have disabilities. And it addresses topics, such as friendship, and loneliness, and those sorts of topics. But also, it’s designed to also teach science and philosophy to young adults who are neurologically diverse or have disabilities. And it’s written in a dialogue format, which I think is sometimes easier to understand and, and by reading the blog, hopefully, you can learn more about science and then utilize these topics in your education in your school.
HR:
Well, I took a look at it, and I think it’s great. And, you know, with, I think it’s also good, we kind of do it in reverse here. For instance, with all of these zoom calls, we now have the modern technology, using Otter auto transcription, that what we’re doing now gets automatically transcribed so nicely with all the punctuation and everything, so that our readers no matter how their brains take it in our audience, they can either watch the video, they can listen to the audio, they can read the transcription, however their brain works, and they can do it.
JHR:
You know that that is fantastic, actually, because I, one of the things I’ve learned my daughter has 22q Deletion syndrome. And one of the things I’ve learned over the past 20 years with trying to help her in her education is, you know, if you’re teaching somebody one way, and it’s not working, you got to change your teaching methods. And that’s what Maggie, for example, needed in school, she needed people who were willing to adapt their methods to her learning style. And she learns very, very well in the dialogue format, or by watching videos.
HR:
Tell us about your wonderful daughter, Maggie, and tell us about DiGeorge syndrome in your journey.
JHR:
So Maggie is now 20. We adopted her when she was seven months old. And she is to be quite honest, she’s the light of my life. She is just wonderful. She has made our lives so much richer for her presence in our lives. It is absolutely adore being her dad. She we we didn’t know she had it. It’s called DiGeorge syndrome or 22q 11 deletion syndrome. And I there’s other names that are frequently put in place also, but I’ll call it 22q just because I’m comfortable with that term. It’s that the terminology I’ve used for 20 years, we didn’t know. But we did doctor that she had 22q. And it wasn’t until gosh, she was probably four or so when we found out she had 22q and we had to do this crash course on, you know, what is 22q? What does that mean for her development? What does that mean as she grows up and so we I just started reading books as whatever books or articles I could get my hands on anything I could learn. And my wife and I read to get to learn more about it. And it’s a deletion in the chromosome. And the result is both cognitive challenges, but also physical challenges. So she’s had a couple of open heart surgeries at this point, probably a third one on the horizon. She’s She has spinal rods in place to correct scoliosis. And she’s had some minor surgeries, but she has also has some cognitive challenges with learning. And it’s it’s those cognitive challenges, the physical challenges, you know, you just you go to the doctor, and there’s some amazing doctors in the United States here you have all over the world who are just doing miraculous things. So although the physical challenges like the heart surgery were scary, you know, we I always just trusted the medical team. The cognitive challenges were the ones that we’ve had the most difficulty with. And, for example, is trying to convince teachers because she she has 22q She doesn’t present the way we think people with disabilities should present she doesn’t look like she has abilities for people who are unfamiliar with 22q. So they look at her. And they just think you know this, this is a child who’s not trying very hard. This is a child who just doesn’t want to learn and the challenges, we’re getting educators and parents and coaches and people across the spectrum to understand that you don’t have to look a certain way to have a disability. And that that was our biggest challenge with 22q because she has cognitive challenges, but, and her brain does learn differently, but people don’t expect it. So their biases are, you know, she should she’s just lazy. She’s not learning, right? She’s not working hard enough. And she is. So I…
HR:
You could have said that exact quote, almost, for Asperger’s and high functioning autism. This kid is smart, this kid’s got to be lazy. What the hell is wrong with this kid, instead of their brain works differently.
JHR:
That’s right. And I, that has been my I’ve been standing on the rooftops yelling that from the rooftops for 20 years saying just because Maggie doesn’t look, the way you think people will challenge people with disabilities should look, does it mean that she doesn’t have a disability and doesn’t mean that you should just demand the same thing, and the same to apply the same teaching methods to her as you did everybody else. And which is why I started making me the blog because I knew Maggie needed help talking about things like friendship, talking about science, talking about philosophy, she had to help doing that her brain learns through dialogue. And that’s why I write it in a dialogue format, because that’s how Maggie’s brain works better, you know, works best.
HR:
Can she read in a dialogue format?
JHR:
She does read the dialogue. And but I think it’s the it’s the question/answer where, you know, she can understand the question where she’s just reading a narrative, there’s no question for she’s just trying to bring in information that that doesn’t track very well with her where in the question and answer format, it’s just small snippets of information that she can latch on to that snippet, and then latch on to this next snippet.
HR:
How does she do with captioning when she’s watching something with video. Like, for instance, I’m hard of hearing. So every time we watch a movie, I also have the the captions going across the bottom, so that whatever I don’t hear I can pick up visually.
JHR:
She She doesn’t use captions, because it’s too much stimulus for her to watch the video and watching the video and reading are two completely different things for her. And so the captions don’t work. Well. What she does do is she watches the videos multiple times. So she’ll, she’ll watch for example, a television show, you know, 5, 6, 7 times until she finally gets it or she’ll watch a video from one of her classes. You know, the teacher puts up a video she’ll watch it 5, 6, 7 times.
HR:
Now what level is she at educationally? And how are you approaching that for other parents out there who are in similar straits?
JHR:
Do you mind if I talk about her educational journey?
HR:
I want you to that’s present I want you to it’s all about. It’s all about Maggie and her journey. And your perspective on it as well, because you’re in the thick of it.
JHR:
So when she went to grade school, she had one really good teacher who understood what was going on and talk her differently than the other kids. And that was in second grade. But then after that, it just became a disaster. And by the time she got to junior high, she she just didn’t want to go to school anymore that teachers were helping her. And we we endured a lot of abuse, or maybe endured a lot of abuse, a lot of bullying because she was smaller because she couldn’t speak very clearly at times. And so she endured a lot of bullying and abuse and the schools just didn’t understand because again, they’re prejudiced against against students who don’t look like they have disabilities and people are inclined not to accept it. So by the time she was in junior high, I was 100% convinced she was not going to she was not going to finish high school that this wasn’t going to work. So we actually took her out one for a while and tried to homeschooler and it was an unmitigated disaster. And it I think it was hurting our relationship with Maggie trying to be both teacher and parent and advocate. And so we searched around a long time and interviewed at a bunch of different schools and actually moved to Colorado to go to this one high school. And we found this one high school and I was really frustrated with this school with with the search when we got to this school and I walked into the school for the interview because we were trying to find a place make up be at home and I walked in and the the principal sat us down for the interview to see if they would accept me. And I said, Before you start, let me just explain Maggie’s journey again. And the bullying she’s went through and not just bullying by kids, but bullying by teachers, like we had one of her principals asked when Maggie was standing there, why is my school become a dumping ground for kids like this? Good. And and it’s those sorts of comments that were just horrible. And so I told this principal that soon I said, Why doesn’t my daughter deserve a good education? Like everybody else does? Why is it that schools just want to ignore my daughter and kids like my daughter and, and just, you know, almost bully them. And I was really frustrated. I just dumped on him right at the start of the interview. And I got, I’m getting a little emotional here because this this guy was wonderful. He, he says, You know what, you’re right. Your daughter deserves an education, interviews over I’m gonna admit it right now. And they bent over backwards for four years of this school to make sure Maggie had tutors make sure she was integrated socially. They did everything right. It was beautiful. And Maggie went from getting almost all Ds, some most of the time not even passing to God, it was an accommodated education, obviously, but to getting a B+ average and graduated high school two years ago. And it was it was wonderful. It changed her course of life. And this school bent over backwards. So there are high schools out there.
HR:
What’s the name of the school, by the way?
JHR:
It is Heritage Christian Academy in Fort Collins.
HR:
Let’s give them a good plug. Heritage Christian Academy in Fort Collins, Colorado, we salute you.
JHR:
They, they were wonderful. And Maggie’s a different person because of heritage. And they just did everything right with her. And she is now at the local community college as a result, here’s a kid I never thought would graduate high school. And she’s, you know, she’s working hard where other students put in four hours, she puts in 10 hours. I mean, she, she has an incredible work ethic. She’s She’s a machine, but it she struggles with it, but she’s in college. And how wonderful is that? It’s, it makes me emotional to think about it that she is able to she attends part time, she can’t take more than a couple classes in a quarter. But she’s working her way through it. And it’s all because we found a high school out there. And if you work hard enough, you can find the right place for your kids. And we found it in heritage moved to Colorado, just so she could be part of this high school.
HR:
That’s great. That’s great. You know, Alexandria Wright, who introduced us, who’s terrific, and who’s going to make a great attorney. You know, she was explaining to me, how sometimes the accommodations provided, make the students, the other students not like the students who are getting the accommodations, because they’re getting extra time on the test, and they’re getting extra help. And this and that, and there was some I was completely ignorant of that, that Alexandria, let me know about.
JHR:
I think that is correct. And I think kids will take their chance to, you know, to treat kids who are getting the accommodations treat our young adults who are getting accommodations, in less than in a good fashion. And that did happen to me a few times. But, you know, as long as you have strong advocates at the school, who are willing to help, may God help with social accommodations, you know, they made sure that Maggie was plugged in, and then Maggie did find one young friend. And he, he was one of these young men who’s just six foot two, just big even in high school. And he took on a very protective role that made sure she was not bullied and protected her and he was integrated into it. And he was just wonderful. And I don’t know if the principal set him up in this role, but I sometimes think that he did. And the principal played a very strong role in making sure maybe had friends and kids were not beating up on herbal in her anything.
HR:
For those out there with a child who has a rare disorder, which Maggie has the 22q. What advice would you have for them, their child has a rare disorder.
JHR:
Um, you know, you what I learned, and I don’t know if this applies to everybody, but what I learned is you have to be your child’s best advocate, you you have to know the disorder. You have to know more or as much as the medical professionals and you have to be there for example, maybe second heart surgery, the surgeon came to talk to us and I started talking to him about 22q. And he was just uninformed. He was a pediatric cardiologist, but was uninformed about 22q…
HR:
You bring up a great point. And I don’t mean to interrupt you. But I am always stressing that, as my daughter had 23 rare brain tumors, and we went through the Mayo Clinic and everything. And I would tell all my patients as an orthopedic surgeon, before there was Google, you know, you got to go to the library and research this because the doctor, you say, your pediatric doctor is seeing a million different syndromes, but your child is the one and only for you with that syndrome. And now with Google and the internet, let me tell you, it’s not that difficult to know more, or as much as your doctor, at least in certain ways, I’m not saying you’re going to be a doctorate, you know, tell them exactly what to do. But there’s a lot of knowledge out there now that there was not before, particularly for something you’re talking about.
JHR:
I absolutely agree. I in fact, printed off all the all the best articles, I could find it I carried them around in this white three ring binder with me, whenever we went to a medical appointment, I came along lugging my binder with me. So I had all these articles. And I would, there were a couple that were really excellent that I’d gotten out of medical journals that I would print off. And whenever we went to an appointment with a new doctor or a new nurse practitioner, I would hand him a copy of it. And, you know, I made sure that everybody who was looking at it in any way any medical capacity, had copies of these articles and knew about it and I talked to talk, I think sometimes I might have even been a little overbearing, but the result is that they knew what I knew. And that caused them to be better doctors, and they wanted to be better doctors, but they knew that, you know, they can’t just give me a dictionary definition, let it go, because I’d read all the journals. And so I think you have to be your kid’s best advocate out there. And you just have to do the legwork. And sometimes it’s hard. Sometimes I felt stupid, I’d read the articles and not know what I was reading. But I read them again and again until I did and I advocate and continue to advocate for Maggie as far as her health goes. And some are more challenging now that she’s past the age of 18. And doctors are willing to chat with us about her. But we still my wife is the same way. We still just advocate like crazy to make sure she’s getting what she needs to be successful.
HR:
How has your degree in philosophy helped you?
JHR:
I think what it has done is it’s given me it philosophy itself helps me with topics like talking to Maggie about friendship, because you can reach back into the Aristotelian rubric for ferret friendship. And but more than that what it is done is just the sheer amount of years that I studied, it’s helped me learn to learn. And I think that’s an that was an important skill, especially when it came to Maggie or comes to writing the blog on science to help maybe because maybe you have to take a class in science. And so I started this astronomy series, because I thought she took an astronomy class she had already had the history of astronomy in dialogue format, to help are long and I think what philosophy did is it taught me how to learn. And so I’m able to reach out and research a topic much easier and learn to ask the right questions. That’s what philosophy does is it teaches you to ask the right questions. And I it’s taught me to ask the right question so that I can continue my learning process. I think that’s the most important thing. It’s done for me. As far as this context goes.
HR:
How is Maggie doing with independence and activities of daily living?
JHR:
She’s slowly learning we’re getting her involved. We’re trying currently trying to get her involved with a group here in Fort Collins that provides classes on Independent Living and teaches her more how to be independent. But we’re we’re doing that ourselves. Also, for example, her and I have a pretty regular cooking schedule where we cook a meal together bake bread together, not that I know how to cook or bake, but we’re learning. So we do things like that. And then my wife has taken you know, takes her grocery shopping and teach her how to go grocery shopping. And it wasn’t until you know just a few years ago, that she wouldn’t even go down an aisle without us. And through this, you know, through this practice now she’s actually able to go to the grocery store and find what we’re looking for and then go to a cashier and pay for it and but that was a you know, for typically developed kids you know, that’s something they just do. You know, almost automatically it took a few years of practicing but maybe to get her there. Were now we can send her the grocery stores just shortly He’s down the street, we can send her to the grocery store, say, you need to get this on the grocery list. And here’s my card, here’s the pin number go by, and she can actually do that task now. So lots of practice repetition and practice repetition and practice, I think it’s best for her.
HR:
Some of the things we know that are good for the brain. I’ll just run through a couple of them and see how, you know, if that’s been possible to apply them. The two immediately always come to mind are a diet and exercise.
JHR:
Yes, diet has been a challenge, because Maggie has texture issues, right. And so or in you know, some taste issues, but things that are acidic, like, you know, citrus fruits, things like that, she just can’t stand it on her tongue. And she doesn’t eat meat, for example, because the texture of the meat just, she can’t stand it. And so diets been a little bit of a struggle, she eats a very high starch diet, and we try and change that, and introduce vegetables because she will eat some vegetables. And it’s been a struggle over 20 years and still is a struggle. And she knows it, she’s aware of it. But she has such texture issues with food that she she is a it’s not correct to say she’s picky, she’s she only eats the things that feel good in her mouth. That’s tends to be high starch. And then exercise, we actually had to purchase her an Apple Watch. So yeah, Apple Watch where she can count steps. And then she, she’s very, she could be very regimented about it. And she has to get in a certain amount of steps a day. And she’s really, she likes routine a lot and this part of her routine, so she’s very rigid about getting in those steps. So we need
HR:
Well, again, that’s a lot of similarities to people on the spectrum. You know, in general, in the event, the it’s like a, you know, a couple of chapters in my book or you know, be you know, don’t be so negative on routines, because they like routines, if it’s a positive routine, you know, with counting, step four is all the all the new studies show Fortunately, that walking is as good as the most intense exercises around there, you if he’s long as you keep moving, you can stay pretty healthy. And then to, to you know, some of the people I’ve spoken to use different puree mechanisms and blenders and different things to change the texture takes a lot of trial and error. And it’s a tough thing. Because, again, people don’t give credence to the texture really, oh, you’re just being picky. No, that I don’t like that texture. Do it. It’s like a smell or a taste or anything else.
JHR:
Yeah, I like the fact that you brought up the the blenders we we did by about a year ago, one of those juicers and we make smoothies and she will eat, she’ll get down a lot of fruits and vegetables through the smoothies because the texture is different. Yeah.
HR:
That’s, that’s good. What do you find, for our audience out there to be the biggest challenge from your parents, you and your wife’s point of view? What would you say is the biggest challenge?
JHR:
The biggest challenge for Maggie and for us trying to help Maggie is teaching other people out there that Maggie is a is a young adult with disabilities, they that has been a huge challenge for us. And, you know, we, we had a recent experience, for example, where, you know, Maggie is very much like, at times very much like somebody on the spectrum where she, she just doesn’t have a lot of expressive emotion, and it just doesn’t exist. And so, if you, you know, if you’re expecting her to love you a certain way, you don’t get that like I I haven’t had her say I love you to me in five years. She just doesn’t express herself that way. And, and we had somebody who thought, you know, Maggie was very unfriendly and harsh. And I just had to tell him, you’re expecting Maggie to act one way and she doesn’t act that way. You have to expect things that are within her portfolio that she’s able to do and so it’s changing those perspectives have been the hardest. The other challenge as a parent that we’ve had is is trying to distinguish what is a what is a developmental issue for somebody with 22q and what is just a teenager issue? What is she just being a moody teenager and what is she actually having this develop? mental issues. And I gotta tell you, I don’t know if I got that one, right ever. It’s just a challenge being a parent of a teenager. But so yeah, that trying to figure out that out was, I think, also a challenge for us.
HR:
What do you see as a career path?
JHR:
I’m hoping I hope that she can get into a job that is a stable Corporation, like a hospital, or a medical center or a university, something that we know is going to be there for the next 40 years, and that she can get a job that is routine, you know, I would, I would think something like a hospital intake person where you walk into, we walk into Children’s Hospital, and there’s a person there to sit here, fill out this form, thank you for the form. Now you need to go to Door number, whatever, something like that, that is very routine for her that she can learn to do, it’ll take a couple years to get good at it, but then she can do for the rest of your life. Because I think if she can have health insurance, and you know, have the benefits that come with a job like that, she doesn’t need a lot of pay what she needs to stability and routine. And if we can find something like that, I think she’ll thrive and, and do very, very well once she learns it.
HR:
That’s great. Is there anything we have not discussed about Maggie and your family today that you’d like to discuss?
JHR:
I don’t think so with with this exception, with this one caveat that I think that in the world of helping people with disabilities, you know, there’s there’s many ways to help people with disabilities are neurologically diverse. Maybe you can help academically, if you’re a doctor, or sociologist, or psychologist, you can help graph papers. If you’re a lawyer or politician, you can help socially, but then there’s this whole, this whole group of people like me, who can help individually, and we can help one to three people with disabilities. And, you know, you can write a blog that helps them learn science, you can participate in a group that helps them learn to socialize. And I think all of us as parents of kids with disabilities, you know, if we all got involved helping individually, because maybe we all can’t contribute to the medical science or the public policy. But if we can contribute to one or two people with disabilities, we can really, and I mean, this sincerely, this isn’t pollyannish we can really change the world for people with disability, especially our young adults with disabilities. And I just really encourage parents to, you know, you if you have a kid with disabilities, you need to help your kid but help one other one to get involved some way somehow right for them, you know, help them in school, help them with groups, because we can really turn this into something very positive very, very quickly. If we did like, like your group, different brains and is doing, there’s so much out there that we can do to help that we can change and I really encourage parents to do it and take some active role some way somehow to help one or two young adults especially.
HR:
Can you leave us with a thought on what it’s like to raise a child with a rare disorder?
JHR:
It is a wonderful experience. Because you get a child that is, is unique and different. And you get to learn and grow as a parent. And it’s, it’s, it has its challenges, but it’s such a beautiful experience. If you can actually grasp that experience and learn and grow with your child also, because you’re changing as your child grows and matures also. That’s just a beautiful experience. I want to live in a world that values differences and values. Parents who also grow with their child’s differences.
HR:
John Hiski Ridge, it’s been a pleasure speaking with you today. Thanks for taking the time. And I hope I get to meet Maggie sometime. She sounds terrific. Thank you for all you’re doing and being a leader. Thank you for being with us.
JHR:
Thank you.
