Shannin Strom - phaware® interview 410

Apr 11, 2023

Pediatric PH Caregiver Shannin Strom discusses navigating her daughter Zoe's pulmonary hypertension disease and the importance of IEPs (both medically and educationally) in Zoe's academic career.

My name is Shannin Strom. I am the mother of a 14 year old amazing daughter that has pulmonary hypertension. We live on an island right off of Seattle called Bainbridge. I'm here today to talk a little bit about what life at school is like with a kid with pulmonary hypertension. Which for me and Zoe's dad and herself, really has to do with quality of life. It's changed over the years and school and life sort of all blend together. For us it's about never saying no to things if Zoe really wants to do something and finding a way to make it happen. That means working a lot as a team with the school and always having a backup plan. Having somebody there the older Zoe gets, the more she becomes such a great advocator for herself and what she wants to do. If she says she wants to bike to school or do field day, we find a way to make it happen.

It has not been smooth sailing. Things are actually getting in a weird way easier for us. Zoe was born with major medical conditions. She had a diaphragmatic hernia at birth. She was on oxygen 24/7 and feeding tubes and didn't walk till she was two and a half. The older she gets, while her pulmonary hypertension is still very severe, for us she's the most stable and healthiest, and most interactive she's ever been able to be. When she was younger, school took a lot more work. She wasn't able to advocate for herself. She wasn't verbal for a long time. It took a lot of parent and teacher intervention. Now, we really let her kind of lead what she wants to do. She's a really good advocate. She knows if her pump is beeping. She knows what she can do and can't do. She'll go walk half a mile on the track and then be tired and tell people she needs to sit down.

For us it's easier in a way. There certainly are things that are harder. I think the older other kids get and the more able they are to do things, the differences between both her physical abilities and her developmental abilities are getting stronger and larger. That could be complicated, just in terms of finding a great social group. One of the things we're running into now is Zoe has switched to the new Remunity pump for Sub-q Remodulin. While it is being billed as being easier to navigate, it's actually a lot tricker, or more finicky I should say. There's things about it that are a lot easier, but we're certainly running into things at school where it alarms randomly. Then it gets turned off and then the teachers don't let us know that it went off. So we're running into a lot of stuff like that and again, things will figure out, but it's handy having Zoe be able to be a really good advocate for herself and all that.

Stress levels over Zoe's academic career I think have changed. There's some ways it's super less stressful. When she started school, she was on Flolan which had a three minute half-life. Literally we had to be at school in three minutes to be able to hook something back up if it got disconnected. That was super stressful. Again, she wasn't able to talk at the time. She was three years old. All of that crazy stuff. So that has gone away. Now, she's really stable. She doesn't need oxygen unless she's sick. But the stress has changed. Right now it feels more social. It feels more sort of like long-term goals. More how to lead the best, most interactive life for her. The medical stuff has, in a weird way, become so old hat. We've just done this for so long that it's just what it is.

Her dad and I have a really good system worked out. I work in the city, long 70 hour weeks and not even counting commuting. He works for the school district. He's literally two minutes away at a different school and can be there. He has the same hours and the same summer breaks and all that. So for us, we've got a really good system that we've sort of stuck with, just for the sake of all the medical things that go along with it. I think that's the complicated thing. We just got out of an IEP meeting last week for her school, talking through all that stuff and trying to navigate the best setup for Zoe. What gets her what she needs educationally, academically, and what gets her what she needs socially, and setting her up for being successful in her life.

I think it changes every year. Every year we try and push a few more things. This year we're really working on the social interaction. She's always had a para-educator with her for medical reasons that she's come to rely on. So she's a kid that's way more comfortable with adults than she is with peers of her own age and relies on them. So we're trying to free that up a little bit and be like, there's an adult in the room, but you still have to ask fellow students what you need or whatever. So we’re really working on all of that sort of stuff. I think that's going to be a work in progress.

The schools district that she goes to has seventh and eighth at one school and then it's nine through 12. So we're in her first year at the middle school. She'll have one more year where we can hopefully establish some things. Then we'll have to see how high school shakes out after that. The differences are getting bigger and she, like many pulmonary hypertension kids is a petite little thing. I think physically looking out for her when she's in the middle of 15 year old boys running around school and pushing and shoving and all that. Just silly things that nobody really thinks about until you have a kid like this, trying to find the balance.

IEPs are so important for kids like Zoe. They cover all the things both academically and physically what they need. So Zoe's IEP has things written into it like she can take naps whenever she needs to. Absences don't count against her. She doesn't get graded like a normal kid. When she gets into high school, there'll be things like she gets two sets of books so she doesn't have to carry things from class to class, weight wise. She gets to take elevators. Things like that that cover the physical aspects of it, that really help keep her going through the day. Because most kids with PH, there's ups and downs and they get tired and school days get really long. Then of course it covers all the academics. So those vary, and some PH kids I think have IEPs that are just for medical reasons. Zoe's covers both academic and medical.

It's the future of our kids. They go through so much already medically that they have to think about, that just giving them whatever tools they need to support them is key. Zoe's a little different. She's not a typical kid. There are of course many PH kids that are typically developed and go to college and all that. I don't know that that's in our trajectory, but it's key. It's the way they navigate. What we're working on right now at school is life skills basically. So learning how to cook. Learning how to count money. Learning how to know where to go to answer questions. How to read a map. How to get places and stuff like that. So really working on things that'll set her up for what she does after school.

Going back to when Zoe was littler and more grade school age, I think the things that we worked really hard on with her then that seemed to really set her up and her fellow peers, were normalizing what her condition was as much as possible. So we would talk to the school at the beginning of the school year about her being on oxygen and having these tubes and why she had this pump on her back. The kids were little, we didn't get into big details about it, but we just talked about it so that it wasn't something that kids would stare at and be like, what is that? It just made it a thing that was very out in the open.

Kids and parents probably feel differently about that. For us, that was really the way to go, just to have it be a thing. Zoe's always talked about it really openly. We've done things like there's a book that she loved when she was a kid that was called Ghosts. It's a graphic novel about a little girl with cystic fibrosis who had oxygen. Zoe did like an oral book report on that. So just doing things like that that just sort of normalize, I'm not the only kid that has this. Part of that's also our school district. We go to a smaller school district that has 200 kids in each graduating class. She is the only kid that's like her in our school district.

I feel like the older she's getting, the less she wants to talk about it or be open about it. But also the kids all know by now. They've all mainly grown up together. Now it's just a thing and we don't have to talk about it anymore. But I think really establishing that when she was a child really helped a lot.

I am Shannin Strom and I am aware that my daughter Zoe is rare.

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