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Johnna Elstob

Nov 16, 2023

In this episode we interview Johnna, She is a parent of a child who has participated in many different therapies.  She has an inspiring perspective on her child, Ryan, and the beauty found in his disability.  I hope this episode gives us an example of what it looks like to celebrate.  celebrate differences and celebrate therapy progress.

Brennan Barber  0:30  

This is Brennan and Bethany with Theralinq podcast. We believe that a strong therapist parent connection is essential for therapy success. Join us each episode as we create a community that demystifies therapists and empowers parents.

Bethany Darragh  0:47  

Today we're excited to have Johnna Elstob join us. Johnna is a parent of a child who has participated in many different therapies. She has an inspiring perspective on her child, Ryan, and the beauty found in his disability. I hope this episode gives us an example of what it looks like to celebrate, celebrate differences, and celebrate therapy progress. Let's get to the interview. All right, Johnna, thank you so much for coming. To get started. Well, you tell us a little bit about your family and your history with various therapies.

Johnna Elstob  1:22  

We're a family of five I have two older children they were 13 and nine when our son Ryan was born. We've pretty much done every therapy I think.  We've done OT, PT, O&M, VI, speech. AAC, hippotherapy, aquatic therapy.

Bethany Darragh  1:47  

Alright, we're gonna go back and do all the abbreviations for people. Vi visual impairment. Right. O&M orientation and mobility. Correct. hippotherapy horse therapy or aquatic therapy? Water therapy? Right. I think if you said another one that people might not know, AAC, Augmentative and alternative communication.

Brennan Barber  2:27  

A lot. Johnna, if you don't mind. Can you share with us Ryan's diagnosis and what that initial journey was like for you to to get that diagnosis?

Johnna Elstob  2:36  

Difficult. The beginning was really difficult. We had no idea when I was pregnant. He has a genetic disorder and probably has more than one. But we've decided not to do more testing because we have the answers we need. It's called Septo-optic dysplasia. And basically, at four months, we kind of started digging deeper that we were noticing things about him. It's just a rare genetic disorder. It's like one and I think it's one in 100,000. That tells you anything. And he probably has a secondary but we've there was just really no reason to know more. It impacts three parts of his brain. And he's growth hormone deficient. So he has optic nerve hyperplasia, and he has a midline brain defect.

Brennan Barber  3:30  

Yep. Now with Septo-optic dysplasia, it typically impacts the septum pellucidum? Um, correct around the corpus callosum? Yep. Yeah. And mainly that is impacting the transmission of messages across the brain. And then the optic nerve is is often impacted as well.

Johnna Elstob  3:51  

Yeah. Wow. You know a lot. 

Brennan Barber  3:55  

I'm familiar with it because my son actually received a similar diagnosis. And what was unique is that it's almost a diagnosis that we no longer apply to him because he did not exhibit the typical symptoms of septo optic dysplasia, but also is missing the septum pallucidum and and then has some secondary structural malformations on each side of the brain as well. So ultimately, the diagnosis given that it falls under the umbrella category of insult or injury to the brain before the age of one, his diagnosis was more in line with cerebral palsy. So that is the diagnosis that we ended up landing on.

Johnna Elstob  4:49  

Okay, and when in like if someone at the grocery store asked me, I say CP, yep, that's quicker. And then if someone says, I don't know what CPS is, Well all that being said, Ryan's doing fabulous. And it's just who he is, really. He's awesome. Yep.

Brennan Barber  5:16  

That's, that's amazing. And, you know, I feel like we have very similar journeys in that sense, too. And I think, you know, after receiving the diagnosis, you know, there was a period we went through, and I'd love to hear your take on this too. But just sort of that journey that you go on as the parent. You know, I think there's the natural sort of, you know, initially for us, it was a little bit of like, denial, and it was, we can fix this. And then it was, there's no need to fix this, like, this person's perfect how they are, and, you know, embrace this. So yeah, if you don't mind sharing a little bit about what that was like for you. 

Johnna Elstob  5:58  

I know exactly what you're saying. He's happy. He's healthy. He's doing great, we operate on progress. And his progress is mind blowing. And it's constant. We're so lucky. And then meeting all the different people were meeting in our journey and seeing what other people are dealing with. I'm constantly just so grateful for our journey. Ryan, at one point scared us pretty bad. I think it was about seven months in when we were starting to do some of the testing and things were popping up. We, at four months, we started. And there were a lot of flags. Now looking back that we didn't see as flags. As a newborn baby, he was sleeping through the night, which his blood sugar was dropping. And we weren't…we just thought, wow, we're great parents, this time, he sleeps all night. Now, a lot of times when I see new moms with babies that are waking up, and they're exhausted, I'm like, it's great. It's normal. That's great. Like, be happy. The reason I started testing and looking more into it, as I kept thinking, I didn't think it was a big problem. I thought that there was a supplement out there or that he was allergic to something. And so we changed pediatricians and changed formulas and did all this stuff. And I thought, oh, there's going to be a supplement. It's, it's going to be easy. We're going to put them on a vitamin, put them on a different diet. I had no idea it was as big as it was. I thought it was like a little hangnail of a problem. We had two typical children, a boy and a girl. We just haven't experienced anything like this. He was very tiny. But there's a lot of stuff was going okay. There was nothing huge that was glaring.

Brennan Barber  7:37  

Was he full term or was he a preemie? 

Johnna Elstob  7:41  

Full term, and I was 40 and my husband was 45. And we were not expecting to be pregnant. My daughter was 13. And my son was nine. And so we were while I was pregnant, we were just dealing with the fact that we were having a third child. And so then when he was born, it all unfolded exactly the way it was meant to unfold for our family. So by the time he was born, we were so excited that he was here we had we were we understood, okay, we're having a third child, we thought that's what we had to wrap our brains around, then we were attached to him. And then I think the journey began, began around four months when things just weren't quite right. And we trusted our gut. And around four months, we went to see a doctor because he had a lazy eye. And we went to see an ophthalmologist who knew nothing about septo-optic dysplasia. And, I mean, my husband and I had the biggest disagreement we've ever had in our entire marriage in the parking lot because the guy wanted to do an MRI. And Ryan was four months. And we just, there was no way. We're not putting a four month old to sleep to do an MRI. No, this is this is crazy. So we switched pediatricians and started our journey that way, she suggested the CDSA come out, thank God, they came out best thing we ever did in our entire lives. Because they came out in a team of people came out. And the pediatrician that came out saw him and saw how small it was and said, You need to see an endocrinologist. I had no idea at that point how hard it was to see an endocrinologist. She got us in immediately. And then they also recommended genetic screening, but she said we're fine with that being down the road. We saw the endocrinologist and he said we need to do an MRI. My husband wasn't at that appointment, because it was last minute and I said you're gonna have to call my husband because that was the fight in the parking lot. Yeah. I think at this point he was about six months or so. And the reason we had to do an MRI, the doctor thought there was a possibility that he had a tumor on his brain. All right. So we, I went to the MRI.  It was the overnight MRI that we had to pay out of pocket wasn't covered and $1,000 later, but whatever. They let me sit in the MRI with him. And I just, it was probably the worst moment in my entire life, because we were looking for a tumor. They had the radiologists on call, like there, and they let me sit in there with the earplugs and all that and I just cried the entire, I don't know, 40 minutes. It turned out he didn't have a tumor. And I had already been on the internet and I had read stuff about septo-optic, So I just wasn't surprised when that's what it was. But we were so grateful that it wasn't a tumor. We can do genetic. So we kind of right away, I think because we had a really big scare and had to do this overnight MRI and all that stuff. And how to kind of it was sort of okay, so don't think I don't think I had a grasp on at that point in time. I wasn't thinking like, what, what all the areas this was going to entail. I wasn't thinking about my child was having difficulty walking, talking. I guess you're kind of thinking health at first. I wasn't thinking like the whole picture. 

Bethany Darragh  11:25  

Yeah, what his life was gonna look like. And you mentioned the CDSA. And I want to talk about that a little bit. What did that look like? And really kind of the comparison of what therapy looks like, through the cycle. So I think compare what does his therapy look like now, versus what it looked like, before he turned five or really CDSA is really before three, right? Right to kind of explain that. 

Johnna Elstob  11:53  

Before three, they were coming into our home, which I'm incredibly grateful for, we had a lot of support, because you know, you're just new in this whole thing. And we had Governor Moorhead coming in, and we have the CDSA he had everything OT, PT, speech. And it was just, it was awesome. Because they were coming to our home, there's no way I would have been able to pack them up in the car, with all the doctor's appointments and everything we're doing. It also, I think gave me the support of my own home. Like I didn't have to worry about other people in the waiting rooms or, you know, changing him it was just, I don't know, I have the support of my family around. I think it helped my husband and I think it helped my other children because even if they weren't in the room with us, they were kind of like around listening. And I think it helps soften everything. I think also my older children and my husband got to see what it was going to take too. So I think it gave everybody sort of a more understanding of what my job was gonna become. If I had been in an office, they wouldn't have seen all that. So I think it it brought the whole family into it. Yeah, like that. Then we switched to a lot of outpatient because I needed equipment, like PT, I needed him in the pool, or I needed them on a treadmill. I needed the equipment. The interesting thing is personally, and I don't know that this is for everybody. But now at age 13. Then after COVID, we kind of went back out again, but we kind of come back into the home. And a lot of the reasons why Ryan's work like working on a lot of daily living skills. And then like with speech, I don't want to waste the time of him getting acclimated in a place I want him to have if he's going to talk about watching Peppa Pig, I want his iPad ready if he's going to talk about going to brush his teeth. I want to have our bathroom ready. So we've kind of gone back to the home place but he's also in school all day. And so it's like saving on travel time it's allowing me to work in. I think the home model right now is working for us but Ryan's also working on a like going up the stairs going down the stairs, brushing his teeth in the bathroom a lot of daily unloading the dishwasher, putting plates in a cabinet. Speech has always worked better in the home personally. OTA I tried for a little while after COVID in a gym setting and I wouldn't mind that at some point. But we have an OT that we've had for five years and it's just that that connection is really big for Ryan.

Bethany Darragh  14:39  

So when you talk about these therapists, you're talking about private therapists that you've arranged, you've scheduled on top of what he's receiving at school,

Johnna Elstob  14:50  

And he does all of it at school.  Yeah, that's great. He's very lucky.

Bethany Darragh  14:58  

He's lucky to have you.

Johnna Elstob  14:59  

I've made it a priority. 

Brennan Barber  15:03  

Obviously, you know, everyone always says it, but early intervention is so important. And, you know, we had a similar journey. But I would say maybe flip flopped in some ways, and that we initially didn't have a whole lot of indications that was anything necessarily chronic. Like, we were under the assumption at first we thought he had torticollis, just the way he was holding. Yeah, yeah. My son was a preemie. And our first pediatrician was very much just kind of like, well, he was premature, he'll catch up if everything's fine. So then it was similar, though a little bit of a gut instinct that, you know, maybe something's not quite following the traditional path here. So frankly, when we reached out to the CDSA, that was one of the more painful parts for us. Because the person that we had came over, for better or worse, is just very blunt. And we were not prepared. And I think my natural instinct at the time was to almost, you know, apologize for certain things that he wasn't doing, you know, and during that, that meeting, and, and remind her that he was a preemie, and that our pediatrician told us that he'll probably catch up. And as she was walking out, remember the woman just saying, I'm sorry, but something's wrong. And it's just very much a punch in the gut. And even to choose those words, I felt like it was a little bit surprising. Ultimately, that's what ended up getting us on the path towards therapy, though, and similarly we're still doing outpatient therapy in a private setting, and then supplementing it with school therapies as well. Yeah. Yeah,

Johnna Elstob  16:54  

A lot of our PT now we're doing in the community, like on purpose, just because it gives us like, he's starting to walk further and like tougher terrain and things like that. However, like that being said, we're having problems. He loves taking a bath, and we're having a lot of trouble with getting him out of the bathtub. Sure. So we did PT in the bathroom with his clothes on, on Wednesday, and he was like, Why in the world have my clothes on? That was fabulous. But I was like my back, yeah, actually got to figure out a solution here. So I think that's the part that has been really helpful. He's now 81 pounds and having all these therapists in our home. Because they're seeing things that we're dealing with. Just even like, you know, oh, this is how he's eating with a fork. What if we build a fork, that type of thing? Oh, he's having trouble pushing his pants down. Let's put a rifton potty chair in the living room. They're seeing like all the things that we deal with. And I think that's been extremely helpful. However, at this point in our life, he's an only child, because my other two are grown and out of the house. I'm not sure I would, I don't think I think my situation is a little bit unusual. Well, it's definitely unusual. But having that gap and space, I don't, I'm not sure I would be doing all the same thing if I had a five and a six year old, so. So sometimes I like to preface that with people. We're very lucky, I'm very lucky. This couldn't have gone better if Ryan would have been my first, this experience would have been totally different. And then the fact that we have a gap, we basically have a therapy room in our house for him, you know, and that's where we go and do all the therapy. And I'm, I'm not distracted by a five and six year old.

Bethany Darragh  18:54  

I am so curious, I know that you are very involved in therapy and know what works and what doesn't work for Ryan, and you're his advocate. So I was really interested to hear what you had to say. When you think about his whole therapy journey. And the times where therapy was super effective. What was the secret sauce? What were those vital elements that made it so.

Johnna Elstob  19:19  

it's always been effective, because I don't put up with less. I mean, it's always been effective. I mean, I'm just, I'm being honest. I've had, we've had bad therapists, and we had a bad one about a year ago and I hadn't gone through this in a long time. And I was so proud of myself. She kept bringing out a glue stick and paper to rip roti. And I'm like you know, I never said this was important to me. If I can only pick 20 Things Ryan can do a glue stick and ripping papers, not one of them. Ryan is very lucky. He has kept his Medicaid. It's covered. But I thought you know this person is making money doing this, but also At this point, being older and being gone through this journey, I need to advocate for other families that don't know. And I thought she needs to also learn. And so I just said, Hey, can we stop? And that day, I was lucky enough, I had brought my CNA with me because this had been going on for like two weeks, and it was starting to get on my nerves. And I said, Can you please bring Ryan out, Ryan's very bright and I didn't want him, he picks up on everything. And she brought him out. And I just had to come to Jesus moment with her and just explain like, this was not on my top list to do. And, you know, just I kind of use it as a teaching moment for her. And I don't know, we left, I left, like in the middle. I was like, I'm done. Like, I can't, it's not my job. I want to teach her but it's not my job. Ryan's gonna suffer. And I went back to my old ot at that point, because I was like, I had tried X, I wanted to go to the gym setting. I'm like, why are we doing a gym setting? This makes no sense. But my point being is, I think early on when I had one therapist come in, she had jet black hair, it was wild, sticking out straight, and Ryan couldn’t stop staring at her. And she decided to tell me he was autistic. And she'd only been there for 15 minutes. And I was like, No, that's not, that's not our issue. We got issues, but that's not our issue. I was like, You got jet black hair, he's visually impaired, he can't stop staring at your hair. And, you know, back then, I probably wasn't as outspoken as I am now. So I called her office and said, you know, we're done. I just don't put up with less. It's like, my time is money. Money's time, Ryan is precious, and he deserves the best.

Brennan Barber  21:46  

Absolutely. I think, you know, family involvement is massive. And I think advocating as well. You know, you mentioned it, every parent will advocate for their child, but there's a different level of advocacy that happens when you have a child with a disability. And I think one of the challenges that it sounds like you all have as well is when, you know, people make certain assumptions about their abilities, what we're capable of, and, you know, we've encountered that a couple times as well, you know, we're, you know, based on initial impressions. Yeah, there's already a ceiling that's been placed in somebody's mind about, you know, where this child can go. And not only have I seen my own son break through a lot of those barriers but it's also extremely frustrating when you have somebody who you just meet or you've known for a short period of time, and they try to tell you, they can't do things they're already doing. 

Johnna Elstob  22:54  

I kind of, I don't know why, but I'm kind of like, if, if we all had the brain damage he has, he has malformations like your son, he, he's not missing anything. But he has. Everything's thin, like he has a thin corpus callosum. Those pathways are constantly a problem, but I'm like, he's sort of a genius in a weird way that learned how to do that he was not supposed to be able to do I mean, we had a doctor tell us he was never gonna sit up. That was one of our hardest appointment. And I don't even remember what kind of doctor it was at that point. But he was like one, and my husband, I were there. And my husband in order to get through these appointments. He decided this happened multiple times. He would like throw them in the air and make them laugh. Ryan's very happy. He's always been very happy. He would make them laugh. Like, as if to distract everyone, like distract the doctor, like, I'm going to take up space. I'm not sure I don't hear you. I don't. But he told us Ryan wasn't going to sit up and was like, it might not sit up. So we left the appointment and my husband said I'll do all the grocery shopping. Which is like, when I think back at that moment, like he was just like, What can I do to help it but he was like already thinking in his brain? Like, how are we going to go to the grocery store with a cart? Like how are we not even knowing what we know that you know what I mean, are taken to the store, but that was his like solution or whatever. But we were told some horrific things. And they're not true.  I think that's probably been my hardest part is some of the doctors more than the therapists have been my biggest cheerleaders. And, you know, when they talked about that whole village stuff, I mean, I have some, like tomorrow night, we're reviewing some stuff for an IEP right now and I'm meeting with his PT from age five with the school system. She during COVID She came to our yard he had a foot that went in And then he needed Botox. She came to our yard on a mat and was stretching. I mean, people love when that's been my experience, the therapists have been almost more important than the doctors. They're my cheerleaders. They're the ones that I trust. Like. He just said today, today, just today, we're driving him in the car with his device, and he said, Help Help Help, like seven times. Feel tired. Drink coffee. Yeah. And I like sent it to my speech therapist, and we were just cracking up and then I also sent it to his teacher. And I was like, Ryan, connects words like coffee, Feel tired goes with coffee, because he does the coffee coffee cart at school. Okay, they've been modeling. So he's decided those words go together. He doesn't drink coffee. When he was tired, yeah. But he connected coffee. Yeah, that's awesome. Yeah. What I'm really bright. Yeah, yeah.

Brennan Barber  26:05  

I think one of the one of the challenges with CP, and including Ryan in this category is that you know, that there was a statistic that I saw that it was a high number of children with CP are actually above average intelligence, and my son thankfully falls into a similar category, where he is nonverbal. He uses an AAC device as well, he uses eye gaze, because he is he has spastic quadriplegia. But even though he's nonverbal, he's becoming bilingual. He's taking Spanish lessons as well. So it's just one of those things. It's absolutely amazing, you know, to watch this child.

Johnna Elstob  26:56  

Yeah. People don't understand nonverbal, the thing I'm battling now the frustration is that we've spent so much time with being communication based, because of it's been a it's a second language. It's a huge journey, as you know. And so we've kind of missed the gap of like, the academic piece, like people, people don't get how much he knows. Because he's been working on the language piece. And so that's like, now that he's in middle school. The problem is, if you could put him back and be doing some of this academics, he'd be flying. And that's where I battle with, like, should I be homeschooling? What am I doing - the right thing? Because, but we also need our time apart.

Brennan Barber  27:41  

Sure. What, out of curiosity, what kind of device does he have?

Johnna Elstob  27:46  

He's on a Wigo. So he was he was on a Wigo 10. Over the summer, we just moved him to Wigo seven, so we can vary it. He's on touch chat. 42.

Brennan Barber  27:58  

So we have an accent 1400. We're moving to a Toby device though.  The order for that was just placed. So we anticipate in a few weeks getting that one, but did a trial with it over the summer and it worked out really well.

Johnna Elstob  28:15  

yeah. Ryan started on partner assisted scanning with POD a paper pod. Yep, thank God for Wake County School System preschool. And that was the game changer for Ryan. And then I was going to build a system. At all, at that point, I was going to build him a system of eight button system. And he's, he's on 42. Wow, soaring, but it's about what he wants to talk about right now. It's about TV and food and what he wants to play if if you talk to him about bowling or Peppa Pig, he can talk your ear off.  But now it's just it's just turning that into more is you know,

Brennan Barber  29:02  

talk a little bit about how you manage your own personal time. Do you have a caregiver? What does your day to day look like?

Johnna Elstob  29:12  

I Ryan got Cap C services. So we have CNAs and I prefer to use college girls. So that's been such a blessing. I'm an artist so I love to paint. I went to art school so I have a huge love for art,  I have my things that I love that are about me. And for whatever reason I've been able to hold on to those and they I think a big part of Ryan's success is I know I almost every day like over the summer when he's home for instance I'm like okay, we're gonna walk. I want to make sure that we read for a while when he says device doing whatever I am. I want to do some sit-to-stand I kind of have a thing in my head as well. And I don't work for my entire time with Bryan the entire 13 years, I don't work at anything for three hours at a time I kind of put in, I put in quality 10 or 15 minutes where I don't have my phone, I don't have the TV, I don't have distractions. And then I walk away. And then at that point, he plays the keyboard, he watches Peppa Pig. And like we it's not like, all day. I believe in quality versus fun. If that makes sense. My CNA, I have to use two CNAs they're extremely well trained, they do all they do therapies with us too. I put in a lot of time training them and then I try to keep them for about like they're usually sophomores. So I keep them for about two years. And they're just part of our family. They go where they go to the pool, they eat dinner with us, they do a lot in the community and now that he's 81 pounds, some things are harder. And so we do a lot of community things, going out to eat at Chick fil A him ordering french fries with his device, it's kind of takes two people at this point in their kind of my moral support to sometimes You know, so that I'm like, comfortable with like, wherever, whatever we're working on, like, Oh, we're gonna go to Walgreens and buy three things and he's gonna push the cart, it helps to have two sets of hands sometimes.  

Bethany Darragh 31:30

What advice do you have for people who are at that first stage of the journey, for parents?

Johnna Elstob 31:36

I mean I think the first thing is to try not to get ahead of yourself.  You have just been given a huge gift and I know it doesn’t seem like it right in the beginning.  My life is so rich, I don’t wish a genetic disorder on anyone but my life is so rich because of Ryan.  I wouldn’t be the person I am, my family wouldn’t be the person we are.  I wouldn’t know the people I know without Ryan and without his genetic disorder.  It has brought such a richness into my life.  It’s gonna be ok.  Just keep reminding yourself.  You don’t have to have it all unfold now, just focus on today.  What happened today that was awesome, incredible.  There was times that Ryan just stood against a flat wall and just learn to celebrate everything.  We operate under celebrate.  We celebrate everything.  We are constantly looking for the joy in the moment.  And just to kind of unplug at times, walk away, take breaks from therapy, take breaks from everything.  We packed him up last summer for 3 weeks in a camper and just had no therapy but it was therapy everywhere.  It was the best feeding therapy.  It was the best OT, PT, him in the sand.  Enjoy your child.  Love them.

Bethany Darragh 31:30

That’s the best advice.  I love it. 

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