Lisa Patterson: Raising a SKDEAS teenager and the importance of self-care

Do you ever wonder about the future of our recently diagnosed kids?  Or what it what like for the parents that came before us that didn't have the benefit of a diagnosis for most of their child's life?   Me too!  Lisa Patterson is the mom to a 17-year-old daughter with Skraban-Deardoff Syndrome and she talks about what it was like to raise her daughter pre-diagnosis and the life of her daughter now, as well as where she sees her daughter in the future.  She tells us some great stories and gives great advice - including the importance of caring for ourselves so we can better advocate for our children.

Skraban-Deardoff Syndrome is a mouthful!  The Skraban-Deardoff Syndrome Foundation has developed the acronym of "SKDEAS"...making it a bit easier the talk about the syndrome.

Thank you for listening and for supporting the passion project to drive awareness for SKDEAS.  

smilesincludedpodcast@gmail.com

Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.

Transcript

PODCAST INTRODUCTION: This is Emily Beauclair and you're listening to the Smiles Included podcast, Navigating Through Life with our Rare Disease Superheroes. 

Welcome everybody. This podcast is being published one week away from our Skraban-Deardorff family conference, so I still promise that I'm going to bring back speakers and info from that meeting because there's so much great stuff going on in this community and so many opportunities to get involved to raise awareness and to make a difference. And on that note, my guest today is actually the President of our Skraban-Deardorff Syndrome Foundation, Lisa Patterson. 

Lisa is a mom to one of the older children that's been diagnosed with Skraban-Deardorff and she shares stories, a glimpse into the life of an older child. Something I found really valuable as well was where does she see her daughter in the future? But she also took the time to give some advice that I really took to heart as a parent, and I hope it helps a lot of the other parents that are listening. I had planned to talk to Lisa about her role as President of the Skraban-Deardorff Syndrome Foundation, but we went so long in our conversation that I really just needed a reason to make her come back and do a part two. So, she can tell us all about the great work that she's leading for the foundation because it really is an exciting time to be a part of this community. 

Lisa makes reference a couple of times to a video that one of our Skraban-Deardorff dads, Tomas, is actually creating to help drive awareness for the syndrome and I cannot wait for that to be ready because it's one of the great tools that's going to be used to help drive awareness. I hope you enjoy this discussion. 

INTERVIEW

EMILY: Hi Lisa, so thank you for joining the podcast today and I'm very excited to talk to you. 

LISA: Hi Emily, I'm so glad to be here. Thanks for having me. 

EMILY: Of course, and I can't wait to hear about your journey. So why don't you start off with telling us a little bit about your family and about your daughter. 

LISA: Sure, I have two children. My elder child is in college and my younger child is Audrey who is 17 and she has the Skraban-Deardorff Syndrome diagnosis and she's one of the older kids who has that diagnosis and it's kind of funny the way it came about was we knew that something was up and she was little and we had genetic testing and we weren't getting any answers and I just decided to stop. You know after years she was being followed by so many specialists and I just thought I just I have to simplify my life somehow. So we stopped doing genetics for like maybe 10 years and then finally one of our doctors said - you know you really should start genetics up again because they make so much progress so quickly - and so that's what we did and she was 16 years old and we went back and they did the full genome sequencing and then we got the diagnosis and I was I was shocked and stunned. 

EMILY: Yeah, I had to wait a few years to get a diagnosis so I can't imagine what it was like for you having to go through 16 years not knowing what's causing all the delays and not really knowing about her future that had to be so difficult. 

LISA: It was really, really difficult and I just kind of justified it in my head by saying it doesn't really matter what if there's diagnosis or no diagnosis because we'd be doing everything the same anyway and that's kind of the way I feel about after the diagnosis you know it didn't really change anything that we were doing, but it is huge to have a community now. And also, you know you said something about in your interview for the video you said something about how it was a mixture of relief and grief, and the relief part I can't understand because I really did go through that whole you know was it something did I eat was it my diet should I have never gone down that water slide when I was three months pregnant - like all the dumb things you think of like what did I do you know just knowing that it's a random thing that could happen to anybody is a real relief. And then the grief part like I you know because she was 16 when she got the diagnosis, I had already grieved, you know, I had already I already done that. 

EMILY: Yeah, but I mean I'm right there with you about the relief and thinking that it was something that maybe I did and feeling a lot better. You're saying water slide, I was like, did I walk too much? And it's stuff that obviously had no impact, but it was a relief to finally get that part of the diagnosis out of the way. But not having the diagnosis and then not having a community to turn to. And now we even have social media to talk to other parents that have kids that similar diagnosis is, you know, what did you do? What did you do when Audrey was growing up? Like, who did you turn to? 

LISA: You know, I have to tell you a funny story. I was really lucky. I had a babysitter that I actually hired while I was pregnant because my last babysitter, my other kid got a new job or retired or something. And so, I had to hire somebody new. And that babysitter is still with us 17 years later. She's amazing. And I remember one time she came home from the supermarket. She was so excited she came to our house from the supermarket. And she said, “I made a new friend for you.” I'm like, what? And she said, “I saw a lady in the supermarket. She had a little girl that reminded me so much of Audrey. And I just stopped her and got her phone number and her name.” And we're friends to this day, you know, 

EMILY: Really? You called her? That's so funny. 

LISA: Oh, absolutely. Absolutely. We're friends to this day. And, you know, she has a different diagnosis. It's not the same thing. But, you know, I do have a community of friends whose kids have a broad variety of diagnoses. Some are cerebral palsy, some it's Down syndrome, some it's RETS, some it's another kind of rare genetic difference. And I think that community is not as specific as our community because we all have the same diagnosis. But even within our community, it varies so much. So, I think it's just kind of a subtle difference. 

EMILY: Oh, absolutely. I've noticed so many other kids with other diseases or syndromes exhibit so many of the same symptoms as our kids. 

LISA: I have to say the other thing is that the video that Tomas made in Brazil is stunning because when you hear all these families from all around the world and they all say the same thing that we've been through, like how their kid loves hippotherapy, I'm like, oh my gosh, my kid loves hippotherapy. It would have been nicer if, you know, we've had this community, I didn't have to just stumble upon hippotherapy myself, but somebody pointed us in the right direction that I think might have been helpful.
EMILY: I had no idea about hippotherapy. And now I'm looking into it for my son. I just started researching this week to try to find a location that will do it because I heard so many of our kids love it. And it's really helpful. 

LISA: This is my favorite hippotherapy story. One time, Audrey was on the horse. And sometimes she does this fake sneeze. It's like she tries to do it to get a reaction. But anyway, so she's on the horse and she goes, atchoo, and then the horse sneezed. And I think what happened was she knew the horse was going to sneeze because she had such a relationship with that horse, like she felt it. Before you sneeze, you go like, you know, whatever. And she felt it just from sitting on the back of the horse. She knew it was going to sneeze. And that was her way of telling us that the horse is going to sneeze right now. And I just thought, Oh my gosh, she's communicating on a level that I can't even fathom. 

EMILY: Yeah. So how does your daughter communicate with you now? 

LISA: It's really a hodgepodge. She does single word utterances, like no, no is the word. And that way she's a very typical child. And there's some -like no- everybody can understand. She says morning. Morning, people understand that or thank you, people understand that even though she doesn't really get the consonants the way she should, then there's a bunch of things that only I understand or only her close family understands. Then she does isolated signs like music and dance and some, you know, there's just some signs that she just does cat, dog. She knows over a hundred signs, but there's about 20 of them that she'll do more regularly. And then she has an augmentative device that she uses at school, but we haven't really been able to use it at home because she gets, she has ADHD and she gets distracted. So, by the time she's moving from folded or folder, she's lost the thread of what she wanted to tell me. B it's there if she needs it, you know, and then she does get her point across just from gesturing and sheer force of will. 

EMILY: I mean, the amount of things that count as communication is huge. We're using AAC and the augmentative device and just starting out that journey to try to have Joe speak to us. And it's hard. And I wouldn't be surprised if Joe has ADHD too. And I don't know if that's normal for our children, but that kid has an insane amount of energy and cannot concentrate, but he's also four. So there's that. 

LISA: Yeah, I will say that that was a tough thing when we got the diagnosis, and she is on Ritalin now. And you know, you try to kind of avoid medications. Because I think she has like eight different prescriptions that she's on because she has acid reflux. She has allergies year-round, you know, the ADHD, anxiety, you know, so it's just, you know, that alone keeping track of the prescriptions and that alone is a full-time job. 

EMILY: One thing that I’m also very interested to hear your point of view, because now is actually a good time to be raising a special needs child because people are much more empathetic now. I don't know what happens, but kindness is a big thing that kids are learning. I know that everybody is, but it's like cool to hang out with the kid that needs some special help. That's my experience right now. 

LISA: I'm so glad that that's your experience because that has not been my experience. 

EMILY: I was afraid you were going to say that because I'm just thinking back to my childhood and seeing those kids that would have an aid walking around the hallways and I wasn't mean, but I wasn't friends with them at all. 

LISA: You know she has been made fun of and bullied mostly by her own cousins, frankly. But my dad would be like, ah, they're just kids. And I'm like, this is not acceptable. But anyway, she’s happily oblivious to it. 

EMILY: Yeah, yeah. 

LISA: She's completely oblivious to it just breaks my heart, but she loves other kids so much. And, you know, it's been, it's really been a lot of work for her to understand about giving kids personal space, because she wants to be real close to them or she wants to hug or whatever. But I hear what you're saying about the time and I will say that one of the interesting things I learned through this journey has been that disability rights have stemmed directly from the civil rights movement. And I never would have in my mind connected those two things. But a lot of disability rights are thanks to equality of all kinds, including racial equality. And, you know, the civil rights movement was 70 years ago and we're still not there. But we're getting there. And like you said, I don't think it's a good time, but I think it's a better time, I want to say. 

EMILY: Yeah, yeah. 

LISA: Because I work in the theater and now, you know, there's been a real push to having actors with disabilities on stage. And I saw two or three shows just this season who had differently abled actors on stage. And, and it's just a great thing to say because it more reflects the society that we're living in. 

EMILY: I love hearing that. And I hope it only gets better as, you know, we're fighting for everyone to have equal rights and disability is one of those, one of those causes that needs to have equal rights as well. And like, even I struggle and have to check my ableism is the new term. But it's true. I mean, we went to a park this weekend and the first thing I noticed was that it was wheelchair accessible. That's something I never paid attention to in the past or cared about. 

LISA: But even, even before I had Audrey though, then the autism numbers were just going up so quickly that it was scary. And I just knew the society was going to have to make some big changes because the number of people in our society who have a different ability is only growing. It's not getting smaller. And that's not just from autism. It's also from the fact that people are living longer. Right. So the baby boomers are up there in age now and we need to accommodate them. So, I think we're coming along. 

EMILY: That's very true. And I mean, for you as having one of the children that's older, do you have any advice for us with the with the younger children just starting out our journey? 

LISA: You know, one of the things I have to say when I listened to the first episode of this podcast, it totally like I just started crying was when you interviewed Cynthia and she was, I think she said something like, I definitely recommend ABA. And I kind of got upset because I was like, you know, maybe I didn't do enough ABA with my daughter. But that kind of statement actually is a very vague statement because there's a whole spectrum of ABA and how intense it could be. And the more intense ABA, the more controversial it is. So anyway, I guess what I'm saying is that what might really work for one person might not work for another person. 

EMILY: And that's very true. We're actually not supportive of ABA in our households, but I keep hearing how it's been working for a lot of the kids with the syndrome. So maybe we do have a discussion about that on the podcast and what is working and what's not for some of these services.

LISA: So, the thing that I'm dealing with right now is I was thinking about this as I was getting ready for this interview because I have piles this thick of IEPs and progress reports and the paperwork, it's just overwhelming. 

EMILY: So, question for you, can you give us permission to throw out some of those? Do we - do you - look at them again? 

LISA: It's been a journey finding the right school for Audrey. When she first turned three and qualified for special education, they wanted her to go out of district. And I was kind of like, can't we just keep her in district and see how she does? You know, she's very personable. Like she didn't have an autism diagnosis at the time. And so we did it. And of course, that was a huge mistake. And the district didn't know how to handle her. Then she went to this out of district place that was really restrictive. And then luckily, our case manager found this - or I found - the school and the case manager approved her going to the school that she's at now. And she's been there for 10 years. But it was literally the fourth school we tried. So that was torture. But now I am wanting her to go to a different school because she needs the opportunity to be more independent. And I'm having to hire a lawyer and go into arbitration and I'm pulling out all those old progress reports. And that's why I know I have so many papers. I'm a little bit of a pack rat anyway. And I keep that stuff and maybe I don't need to keep it because maybe I could have just contracted the district and said, can you send me the copies of the old progress reports? 

EMILY: But no, it sounds like I would recommend keeping them because you just never know. 

LISA: For, I mean, for 10 years, I was so grateful that we had this great school for Audrey, but then when I discovered this other program, I was like, oh my gosh, this is what we should be doing. 

EMILY: Do you have any advice for parents that are struggling to manage everything that comes with raising a special needs child? 

LISA: I do. And, you know, to summarize it, the phrase that keeps coming up over and over again is put on your own oxygen mask first before you put on your child's oxygen mask; the instructions that they give you when you're on the airplane. And I think that parents and mothers in particular are so self-confident and selfless, right? We just give to our children because we love them and we want to give to them and we want to help them, but we can't help them if we don't help ourselves first. So, I really think that the message is, is don't ignore your own needs. You have to take time to focus on what you need to be happy and healthy. And then you can help your child. And when I say happy and healthy, like, I feel like some people like happiness is a superfluous thing and it's not, it's a necessary thing. And so you have to think about what makes you happy, what do you do that brings you joy? And then you have to do it. For me, one of the most important things is sleep. Like I just protect my sleep. I need it. I cannot function without it. So, sleep is number one and that's like a fundamental need. That's not even an enjoyment. That's just like a life necessity. 

EMILY: Yeah, but it's really hard. 

LISA: It is. It's so hard. It's so hard. And, you know, I confess that I have insomnia some nights because I worry so much and so I take a Xanax and that really helps me sleep or I might take a Benadryl before I go to sleep because I know that that's good for eight hours of sleep. I just know I need it. And, my child was medically fragile when she was younger. Now that you're 17, the scary nights are behind us for the most part. And I feel like I can sleep knowing that everything's going to be okay during the night. And I know that it's hard when your child is younger. 

EMILY: I think you just made a lot of parents very happy that we will get there. 

LISA: Yeah, you will get there. My daughter had a subglottic stenosis, which is a narrowing of the airway. And she has allergies. So every allergy season, it was like we ended up in the emergency room, there was strider where breathing was. It was awful, awful - a nightmare for any parent, a nightmare. But she outgrew it. Thank God now we can sleep through the night. And of course we as parents never stop worrying. And so even though we know our child is healthy, we still worry. And for me, that means insomnia sometimes. And I need a little help. I'm very, very dependent on my psychologist, my psychiatrist. You know, I'm on Prozac, I am. I take Xanax as needed. I am not ashamed of these things. I am proud that I have been able to identify things that will help me to take care of myself and my child. And then, what do I love, what brings me joy other than seeing my child thrive; aside from that, what brings me joy? And then I zero in on that and I make sure that I make time for it. 

EMILY: Yeah, I mean, I agree with you because your kid will know if you're not happy. And it will reflect on them. So it is important to take the time. And you mentioned seeing therapists, anyone in my family that listens to this will tell me that I need to do that immediately. I need to sometimes talk to somebody else. Yes, I think it really is important. And I think that's good advice to listen to as well. 

LISA: Yeah, I can't believe you're not seeing somebody already. Which shows a certain level of fortitude, right? Like we, as mothers are incredibly strong, like we are pulling from the depths of our strength and our endurance and our fortitude. And we're thinking practically too, we're thinking, do I have the time to see a doctor just for myself? And do I have the resources because it costs time and money? But frankly, it's time and money very well spent. You're like the tiger mom advocating for your child, really the number one thing you must advocate for is yourself. 

EMILY: We make so much time for our children to take them to all these doctor's appointments or to take them to the things that they enjoy. And you're right, we need to add the time for ourselves to go to the doctor's appointments and the things that we enjoy. 

LISA: Oh my gosh, you have to pay attention to your own physical health, your own emotional health through professionals, medical professionals. But then there's just the fun things, right? Like for me I mentioned that I work in the theater and for me, I'm just in heaven at a Broadway musical. Like that's my thing, it's escapist, but it's challenging in its own way. And so I just make sure that I could do that. And I also want to say call me, just call me. If you want to talk, call me. 

EMILY: Well, I mean, that's a really good point too, because thank you. Thank you for volunteering that. It's like talking to somebody that knows that I'm going through is also important. I really appreciate that. 

LISA: You know, as we're talking, we're just talking about our everyday life and we're laughing about, you know, the challenges that we have. But honest to God, we are dealing with life and death. I saw this comic strip once it was like, I think it was on social media, it was like, sometimes I feel like I'm in season seven of my life where the writers are just making up crazy shit. Because they don't know what else to do with the plot. Like, yeah, that's me. You know, you can't make this stuff up. 

EMILY: You have to laugh to get through it. 

LISA: It's really, really hard. And then, and but you get it, you get it thrown at you and you're like, okay, what do I do to get through it? You know, first of all, take a moment to be proud of yourself. You know, you have to say, I just made it through that, and a lot of people couldn't. And then once you take time to pat yourself on the back, because other people don't really, you know, you kind of have to do it for yourself. 

EMILY: Yeah. 

LISA: Once you do that, you have to, you have to reward yourself. 

EMILY: Can you walk me through a typical day in Audrey's life? 

LISA: Yes. Let's start with waking up. I'll wake her up at around seven. She sleeps with a pull-up on and depending on her mood, it's hard to get her out of bed. I want her to be independent, but if the bus is coming for school, I can't wait around for her to leisurely get out of bed and maybe leisurely. 

EMILY: That kind of sounds like most teenagers. 

LISA: Exactly. So it's a little bit of a battle in the morning getting her ready for school. I have to be very creative. I have to say, oh my gosh, you're going to see your friends and I have to start naming her friends. And then that kind of wakes her up and gets her excited to do her morning routine, which is taking off the pull-up and cleaning herself and getting dressed and brushing her teeth and going downstairs and taking her medicine and having some breakfast. And oftentimes I can't get her to stay seated at the table because she wants to go and get on the bus, which isn't there yet. I have to say it wasn't here yet. She's back down, finish eating or whatever. Sometimes I have to stand right next to her to keep her in her seat. And I would have also prepared her lunch the night before because I know that I can't do it while she's around because she'll get... I have to keep the door locked from the inside and take the key because she knows that I open the door with the key. Or else, like this morning, she let herself out of the house and ran halfway down the street and I had to run after her and bring her back to the house to get her backpack and her mask on for the bus to come. So then once she gets on the bus, I go...Whew! And then I have a little bit of time to do some paperwork and catch up on emails before I start working. And then happily, my babysitter gets her off the bus and gives her a snack and stays with her until I'm done work, which is usually around 5:30. And then I come downstairs, make dinner, and she's in bed usually by 7:00. So I'm really lucky that I just have those two times at the beginning and the end of the day. But that's probably a typical day. And again, I had the same struggle with the nighttime routine as I do with the morning routine in terms of trying to get her to do it herself and efficiently and with as little prompting as possible. And we've done years and years of behavior therapy. I'm trying to get her to be independent that way because she can dress herself and undress herself. But unless she's earning, like we have a little earning board, then she's just not motivated to do it herself. And then she has tons of doctor's appointments all the time. She's doing vision therapy now. So tomorrow I have to take her an hour away to vision therapy. So that's... When I say I'm lucky that I only have the morning routine and the nighttime routine, I do have all weekends and all school breaks and all doctor's appointments and all. It's still really hard, but I feel very lucky to have the support that I have. 

EMILY: Yeah, that's nice. And sometimes those weekends feel never-ending. 

LISA: I have to make sure that every weekend is planned because if I have a day with nothing to do, it could be a complete nightmare. 

EMILY: I hear you. I'm in that spot too where my child doesn't really watch TV. 

LISA: I will say Audrey, it's bad, but she loves to watch YouTube. And she loves... So that... I can get her to watch YouTube while I'm cooking dinner, for example, on an iPad. And she watches the same things over and over. She loves musical theater and ballet. Those are her two big things. And so usually our weekends involve a live performance, which I wish she had a less expensive hobby, but whatever. 

EMILY: I hear so many of our kids love music. And actually, Joe does watch one show. He watches The Wiggles and he loves the ballet. So, it's interesting that you say that about your daughter. There's just something about music with these kids. 

LISA: It is. I will tell you two things that I've learned through Audrey. And one is you were saying earlier about the number of ways that our kids communicate, right? And I rattled off a couple. But in dance, dance is nonverbal communication. It's full body communication. And the music that accompanies dance also communicates a mood. And I think that's one of the reasons why our kids gravitate to music and dance because they don't have to try to decipher spoken language. And the other thing I will say is that all children are born with this ability to read body language, facial expression, tone of voice. And as we get older, if we're typically developing, we start to lose that ability because we've learned how to understand language. And I've always said that my daughter is a walking lie detector because she can tell about a person from their facial expression, their body language, and their tone of voice, which is more telling them what might come out of somebody's mouth, which may or may not be true. 

EMILY: That's very interesting. 

LISA: It is fascinating because she has the sixth sense that she knows who to go up to and who not to go up to. It's unfailing. The other thing I'll say about music is that this experience once where I was in the doctor's office or something and a man had a child with a disability in a wheelchair and he had a little like CD player or something on the back of the wheelchair playing a song. He said, “I don’t know why, but my daughter loves music.” And I said, let me tell you why. Because in a world that doesn't seem to make any sense at all, you just don't understand what's going to happen next. It's scary. You don't know what to expect. Songs have structure. They have beginning, middle, end. They have the bridge, the chorus. They have a structure and you know what to expect. And it adds predictability to an otherwise completely chaotic world. 

EMILY: That's so beautifully put. 

LISA: I think I've thought about it a lot just because since I've worked in the performing arts and I've just, you know, there's art as therapy out there that I've done a lot of research about and I've just spent a lot of time thinking about it. 

EMILY: You've just made me totally rethink the importance of music and art therapy. And it also sounds like you have an amazing babysitter that helps you out. 

LISA: You know, I don't want to paint a totally rosy picture. I mean, honestly, I have an internal struggle all the time because I'm like, oh, why am I so dependent on this other person? I wish I could do it all myself. We do that. You know, I wish I was superwoman, and I could do it all. And it's been very hard for me to admit that I can't. And I have to rely this other person and that's kind of like admitting a weakness. I do feel very lucky to have somebody I can count on, but it's not ideal. It's never ideal. It's not going to be ideal. You know, I just feel like parenthood is kind of like just getting through it. Isn't that a terrible thing to say? 

EMILY: It's true. Just making it through each day. 

LISA: Yeah, and it shouldn't be that way, right? Because each day should have a point of joy and fulfillment. And I think it's up to each individual to find that within themselves and within their day. And whether it's that you had a meaningful conversation with somebody or that you just took time to appreciate nature, whatever it is you have to provide that for yourself because nobody else really provides it for you. I mean, I will say the one other thing that is a driving force in my life, whether I have a child with disabilities or not, is that I honestly believe that the reason that we're put on this earth is to help others. You know, whether it's your child or whether it's, I think the people that my child brings joy to, that's helping others too. And I just feel like if you keep your eye on the prize, which is helping others on their journey, then you can't go wrong. 

EMILY: Yeah, sometimes I look at Joe and like, I know his purpose. He makes everybody happy. And like, he's changing lives every time you meet somebody, making people think differently. 

LISA: I cannot count the number of times that after Audrey approaches a complete stranger on the street and connects with them in a really profound way, that that person turns to me and says, she just made my day. I really needed that. And I just feel like that's a blessing. 

EMILY: It most definitely is. Is there anywhere else that you turn to for support? 

LISA: You know, I was brought up Catholic and I kind of stopped going to church, you know, and I started going to church again on Sundays and Audrey loves church because she loves the music, and she loves the fellowship and she loves the spirit of it. And I just find - I go to two different churches - and I just find like my church families are so supportive and really helpful. And I surprised myself. I wasn't expecting it. There's an expression. There are no atheists in a foxhole. Have you ever heard that expression? 

EMILY: No, I haven't. 

LISA: Imagine you're fighting in a battle, like in a war, and you're in a foxhole, and you're shooting at people, and people are shooting at you, and you're pretty sure you're going to die. And what are you going to do, right? You're going to pray. I feel like, you know, raising a child with special needs, especially one who is medically fragile, is like being in a foxhole. Because life and death is in the balance. And there are no atheists in a foxhole. Who do you turn to when you're in such a dire situation? You know, you turn to God. You know, regardless of whether you believe in God, whether you don't believe in God, what you're going to believe in is spirituality and the goodness, the fundamental goodness of people to help you. And at the same time, you're helping them. 

EMILY: I like that expression as a way to explain what we're going through in our situation. So the last thing I want to ask you about is the future, because the next, you know, 10 to 20 years for me, I'm really focused on school. But for you, you're coming towards the end of that journey. So I'm just wondering where you see Audrey in the next, you know, five to 10 years. 

LISA: Yeah, it's funny. We had a really great speech therapist a while back and I asked her, just tell me what do you think, you know, what do you think is going to happen? Like, nobody wants to tell you because it's not good news. I said, do you think she'll ever be able to read? She said, well, she might be able to have some sight words, like short sight words. And so now here she is 17. She canin school, she could tell which name is hers on a sticker, like if she had to pick a sticker, this at Audrey, she could pick it. And she could hand the other kids theirs to like she recognizes their names. But she, academically, it's, you know, it's very discouraging. This year that she's in right now is the equivalent of her junior year of high school. So, she has one more year of high school. And then in New Jersey, I don't know what it's like in other states, but in New Jersey, you stay in the education system until June of your 21st year. And or June of your 22nd year. So it would be the June after your 21st birthday. And so the period from graduating high school and when you're 21 is called transition. And that's when you kind of stop working on academics and start working on life skills and vocation. I mean, they work on life skills all the time anyway, but New Jersey is what's called a work first state. And the goal is that every person over the age of 21 has a job that they get paid for. And so I'm hoping that we could find a job like that for Audrey. Like I think that she would be great working with the elderly, for example, because she just brings a smile to everybody's face just like Joe does. And I just feel that she, you know, if any people were lonely or whatever, she just engages with people. She gets people to laugh. And I just think there are moments like that that I just know there's a place for her where she can really bring joy to people who need it. So that's kind of where I see her. I see her maybe living in a group home and maybe working part time doing something like that. 

EMILY: Wow. So that's really interesting. I've always been thinking more about a trade, but just bringing a smile to the elderly's face or anyone's face is if that could be if that could be their jobs, they'd be they'd be the best at them. 

LISA: Yeah I mean, I love the fact that sometimes we've gone in to bring Audrey for surgery and they'll be like a guy playing the guitar in the waiting room. You know, that is so amazing. Or, I mentioned arts therapy before, for art therapists to come into your room and, I've seen it through my work time and again how your mood just changes because people just need human interaction and to be stimulated and to be creative. 

EMILY: Therapy kids. 

LISA: Yeah, yes. 

PODCAST EXIT

EMILY: Thanks for listening. I hope you found today's topic helpful in your rare disease journey. If there are any other topics you want me to discuss or if you want to be a guest on the show, please reach out to me via the email included in the show description. Talk soon.