Sep 7, 2020
For All Abilities – The Podcast Henry Furler Part One
For this episode of For All Abilities: The Podcast, I got to talk with one of my very favorite people. I interviewed my son, Henry Furler! Henry and I talk about the life threatening medical problems (including epilepsy, dysautonomia, autoimmune disease, autoimmune encephalitis) that he has faced throughout his life and how he has succeeded despite all the challenges.
To connect with Henry, please follow him on LinkedIn (Henry Furler) or email him at jhenryfurler@gmail.com.
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Betsy Furler 0:05
Welcome to for all abilities the podcast. This is your host, Betsy Furler. The aim of this podcast is to highlight the amazing things people with ADHD, dyslexia, learning differences and autism are doing to improve our world. Have a listen to for all abilities, the podcast and please subscribe on whatever podcast app you're listening to us on. Hi, everybody, welcome to the for all abilities podcast. This is your host Betsy Furler. And I'm so glad you're here. This podcast talks about the amazing things people are doing with brains and bodies that may be different from the norm. Often we talk to people when they're diversity and today I have a very, very, very special guest with me. I know I always say that my guests are special and they all are but today is the most special of all. Special guests. I have my son Henry Furler. With me today. Hi, Henry. Hello. Welcome to the podcast. I'm so glad to be here. Henry, I want you to tell my audience about your life as a little boy. So tell us what you were like as a little boy. And we can weave in areas of your diagnosis. So, all start, I guess by telling the audience that you were sick from the moment of conception. I had a very rough pregnancy. And when you were born, you had a hard time and had a blue spell when you were about 24 hours old. Where you stopped breathing. We were still in the hospital. And you also had to be re hospitalized for three weeks because you couldn't gain weight, then you had apnea then you had seizures at about three months. And but you are an amazing, very smart baby, despite all of your medical challenges, so why don't you take it from where you remember and about three or four years old. The other thing my audience has to know is that Henry has an amazing memory. And he remembers things even from when he was really tiny. So tell the audience about what you were like as a little boy.
Henry Furler 2:26
I remember being very energetic and loving to learn new things. And I remember a lot but it's usually usually specific thing, little memories, little memories.
Betsy Furler 2:42
What were your favorite things to do when you were like really little like two to four years old.
Henry Furler 2:47
I liked to go to museums and go out to places where I could learn new things I loved watching Arthur on TV and watching other PBS Kids shows that most kids Wouldn't be watching. Um, we watched a lot of Forensic Files on Discovery Channel. A, you can explain why we watched.
Betsy Furler 3:14
We watched a lot of Forensic Files when we're in the hospital and he also loved Ancient Egypt.
Henry Furler 3:18
Yes, I did. I've loved history and social studies since I was little and that has influenced my future. career path. I'm currently getting a degree in anthropology from the University of Houston at Clear Lake.
Betsy Furler 3:35
So, um, you were in the hospital a lot, even as a very little kid. What do you remember about being in the hospital when you were little?
Henry Furler 3:45
I remember that it wasn't. It wasn't fun. But, um, the nurses and the people who would come to visit me tried to make it more interesting and I remember being in the hospital as a, I guess you could describe it as more of a joyous experience. I remember when I was little, I had one at one point I had an ID in my foot. And I would be taken around in a little wagon and we would go around the hospital and they had little play areas. And, um, I remember at one point, my dad brought window markers to the hospital, and we would draw on the windows in my room and have the, the window that went out to the hallway.
Betsy Furler 4:40
So a lot of people think kids are really scared in the hospital, but you were usually not scared there when you were little.
Henry Furler 4:46
No, I've had a lot of experiences in the hospital and even when I was little. If kids have been in the hospital a lot, they may still be scared of the doctors in the hospital, but I was never scared of the hospital.
Betsy Furler 5:02
And you may not remember but I started teaching you when you were two to know which medications you were supposed to be taking, and kind of what they looked like and what the names were. So you were able to tell the nurse if they gave you the wrong medicine. So that was really different than most little tiny kids on the hospital.
Henry Furler 5:21
That's something that I still do. I always ask the nurses to show me the medicines and to show me what they brought to the room doing the ibig. Actually, I think I don't have to ask them because they always show it to me beforehand. So
Betsy Furler 5:37
So what kind of school did you go to an elementary school? A lot of people think that if you have lots and lots of seizures and other medical issues that you have academic problems. So tell my audience a little bit about your academic experience.
Henry Furler 5:50
When I was in elementary school, I'm in kindergarten, I went to a normal school. It wasn't Specifically gifted and talented but I was classified as gifted and talented there. And then starting in first grade, I went to a gifted and talented and IB primary years program, school that was very diverse and taught about a lot of different things that focused on how we can connect things in the world. And I feel like my education there was more.
I'm trying to think of how to explain it. I'm
thorough, even though we didn't focus on specific, fixed subjects all the time. So the things that we would focus on would be themes or topics, and we would focus on those for a few weeks. And the normal subjects like math, science, social studies, and English would be woven in to that. So there was no like math time or science time, there was there were themes and we would weave those subjects into that.
Betsy Furler 7:12
So in elementary school, you may not know this, but you were classified as special ed as well as gifted and talented, near classified as special ed because of your, your medical issues. So tell the audience what kind of accommodations you got in elementary school, if you remember.
Henry Furler 7:29
I don't really remember you thinking any accommodations other than the extended testing time for standardized tests. I don't even know if I had that in elementary school.
Betsy Furler 7:40
You did, but you didn't really need it. But what you needed was small group testing, more so if you had a seizure or something happened that you didn't disrupt a whole group of kids and you only disrupted a few kids, so it was easier for them to manage. You also had extended time for assignments and preferential seating although I don't know that you really Even needed that our class our class say
Henry Furler 8:04
that our classes were very small anyway, the largest class I remember having an elementary school, I think was maybe 22 students, which is much smaller than a lot of elementary school classes these days, which can go up to 3032, or maybe more, which is, I think, is
Betsy Furler 8:25
very big for an elementary school class. So you continue to have seizures and had some really severe allergies that caused you to go into anaphylaxis. And so, one time he had to have an ambulatory ECG, which to my audience, that means it's a test that looks at your brainwaves, and they put on all the electrodes on your head and if it's ambulatory, it means walking around. So it's something that you can go about your daily life with. Now, most people when they do ambulatory, Eg they just stay at home. But did you stay at home with your ambulatory ECG?
Henry Furler 9:03
No, I was in second grade and I went to school every day that I have the ambulatory ECG on. A lot of the kids were actually very intrigued by the ambulatory ECG, they didn't make fun of me or anything. My school was very accepting of every pretty much everything they would ask me and I would explain to them that it was looking at my brain and how my brain was working.
Betsy Furler 9:31
Do you remember that every year we talk to your class about your medical problems? I do. Um,
Henry Furler 9:40
it got a lot more complicated to explain those things to the class as as time progressed, because we would find out more and more things. And I believe we stopped doing that when I started Middle School.
Betsy Furler 9:57
And the the greatest thing about that That and why I can encourage other parents to do that is because your friends that you went to elementary school with to this day are some of your best advocates and friends and one of them even went to college with you when you lived in the dorm. And she was so aware of everything that was going on with you. And I was so concerned and such a great friend. So let's talk about Middle School a little bit. So after elementary school and you were so taken care of at River Oaks Elementary, I know, there was one time that I had to be a little firm with them because they wanted to take away your special ed dead designation, because you were so smart. But I wouldn't let them do that because you remained having the medical problems and we never knew what was going to happen or how much school you might have to miss. And we needed to preserve that. So you couldn't get kicked out of the magnet program. So what happened in Middle School.
Henry Furler 11:01
When I start right before I started Middle School, I'll start with this. I started having a lot of anaphylaxis ik reactions, which were eventually attributed to something called colon ergic. urticaria, with anaphylaxis, and I missed a lot of days of actually, it only happened a few times before we started on the prescription medicine to work with that, but a few times I had anaplastic reaction that school and I had to be taken to the emergency room.
Betsy Furler 11:33
And that's called an Arctic Arctic area with anaphylaxis is basically a, an A anaplastic reaction, or a severe allergic reaction to your own sweat. So he would sweat and then he would swell up and have an anaplastic reaction.
Henry Furler 11:50
There's an episode of The Simpsons where Milhouse lists a lot of things that he's allergic to. And at the end, he says, and I'm allergic to my own tears. And just so you know, that can actually happen. So,
Betsy Furler 12:05
yeah, so so you had all of those allergy things going and then in sixth grade you had a video eg that I thought was going to show you weren't having seizures. And it turns out you were having seizures every 10 minutes, but they were small, what they call petite mall or ops on seizures. So you had those in sixth grade but I don't think they affected you too much at school right?
Henry Furler 12:30
No, I did very well in sixth grade. I didn't have to go to PE because of the cool energetic urticaria but um, which now I kind of regret going to PE not going to PE I feel like that's an experience for children in school all by itself.
But my son terrible for some people. Um,
but yes, I did very well throughout middle school. I'm trying to think of other things to say about sixth grade. Uh, it was good. Um, yeah, I think that's it. There's not a lot of, Oh, I had a lot of teachers that I really loved. We still keep in touch with a lot of them that that I met throughout my middle school experience.
Betsy Furler 13:24
Yeah, your middle school was great and it was also a gifted and talented magnet with IB.
Henry Furler 13:30
The middle years program starts in
Betsy Furler 13:32
sixth grade. And in seventh grade though, we tell my audience what started happening in seventh grade.
Henry Furler 13:40
I started having a lot more seizures when I was in seventh grade, um, maybe about once a week, and they were they were the grand mal seizures, but they would happen so fast that it looks like they were what would be called by some people drop seizures,
Betsy Furler 13:58
right and you have to start with wearing a helmet because you had a couple of concussions.
Henry Furler 14:02
I started wearing the helmet in eighth grade, maybe about halfway through eighth grade. And what was
Betsy Furler 14:08
it like wearing a helmet in middle school?
Henry Furler 14:11
Oh, people with the school loved it. They wouldn't make fun of me but they'd give me they'd asked me about it just like when I had the ambulatory eg and they'd give me stickers to put on the helmet and it was fine.
Betsy Furler 14:25
And everybody signed it like they would sign a cast.
Henry Furler 14:27
Yes, they did. We got metallic Sharpie markers and they would sign it and it was a skateboard helmet. When you think of someone with seizures wearing a helmet, you may think of those a soft kind of like, entire foamy entire head covering helmets, but my dad insisted that we get a cool skateboard helmet. And the doctors that proved that. They said that that would be just as good as the foam helmet. And we did that.
Betsy Furler 15:02
So at this point, we didn't really know what was wrong. We had thought that you had a fatty acid oxidation defect, when you're really little, and then we thought it was another disorder of metabolism. And that never could none of that could be proven. So, around that time we went to the Cleveland Clinic, we'd already been to the Mayo Clinic, which you enjoyed right. And, and he saw our wonderful doctor, Dr. Buckley at the Mayo Clinic and then we followed him to Pittsburgh Children's Hospital of Pittsburgh, and then in about eighth grade, we went to see Dr. COVID Dr. Marvin dito Vich at the Cleveland Clinic, and once you tell my audience about that experience, so
Henry Furler 15:51
we went to see this doctor at the Cleveland Clinic and he sat with us for about six hours. I think that's Seven and a half, I think, Okay. And about halfway through the appointment. He had gone to the restroom or something. And he walked in and he said, I know what's wrong. And we were so excited. And he said, Henry is an alien. And then we're like,
Unknown Speaker 16:19
yes. He said, it's the only
Betsy Furler 16:21
POS that's the only logical explanation for this.
Henry Furler 16:26
And
we were like, yeah, that has to be it. And then um, that's the rest of the appointment was pretty normal, but he ordered a skin biopsy. And we did the skin biopsy the same day that we were leaving on the airplane, which is not a good time to do a major procedure like that. And they did it without any anesthesia
Betsy Furler 16:55
entered two samples.
Henry Furler 16:57
Yes, they did.
Betsy Furler 16:59
So the first one was wasn't as bad because you didn't know what was coming. Yes. So after we saw Dr. Neto Vich we really hung on to the alien thing. And we decided that I'm the alien. My husband is an earth lane. And Henry is half alien half Earth ln, and that's why he has so many medical problems. We decided that he was right that Dr. nitobe, which was right, and that was the only possible explanation. So Henry, I think we're going to stop here. And for now, and we'll grant it we're going to do a part two.
Henry Furler 17:33
Okay,
Betsy Furler 17:34
so if you want to contact Henry and, Henry, I always do this at the end of my podcast. So tell tell the people with the best contact for you as
Henry Furler 17:44
well. If you want to contact me, you can email
Betsy Furler 17:47
so and your email
Henry Furler 17:49
It is jhenryfurler@gmail.com
Betsy Furler 17:59
so Thanks, Henry for being on this part one, and in it and then we'll do a part two with the rest of the story. Thank you audience for tuning in. As always, I appreciate it so much, please like rate review this podcast on whatever podcast platform you're listening on. And please tune in next time for the rest of this story of Henry. Good bye for now. Thanks so much for listening to the for all abilities podcast. This is Betsy Furler, your host and I really appreciate your time listening to the podcast. And please subscribe on any podcast app that you're listening to a song. If you'd like to know more about what we do in our software that helps employer support their employees with ADHD dyslexia, learning differences in autism, please go to www dot for all abilities.com You can also follow us on Instagram. And you can follow me on LinkedIn at Betsy Furler f as in Frank You are le AR Have a great day and we will see you soon.
Transcribed by https://otter.ai