On this podcast, we are joined by Christy Lee, mother to four children, two with Down syndrome. Christy shares with us some tips for parenting during the pandemic on topics such as schooling, shopping, and home life.
Natalie Danner: Thanks for joining us for a podcast from the Illinois Early Learning Project. Our project is part of the Department of Special Education at the University of Illinois at Urbana-Champaign and funded by the Illinois State Board of Education. On this podcast, we share information about how young children grow and learn as well as strategies adults can use to help them thrive. My name is Natalie Danner.
Natalie Danner: Welcome to the Illinois Early Learning Podcast. Today we’re talking about parenting during the pandemic. Today we’re joined by Christy Lee, mother to four children, two with Down syndrome. Christy has been an advocate for her children with disabilities, as well as others with disabilities, since her baby was in the NICU. She served as a family mentor, a panelist, and a guest speaker with the families class at the University of Illinois for 21 years. The past three years, she served as the parent liaison. Thank you so much for being with us today, Christy.
Christy Lee: You’re welcome. It’s good to be here.
Natalie Danner: Great. So today we’re eager to hear from you as a parent of children with disabilities to learn some tips about parenting during a pandemic. So if we can start off, tell us a little bit about your family and your children.
Christy Lee: Okay, well, like you said, I have–my husband and I have four children. Our oldest graduated from college about a year and a half ago and moved out and moved on and is full-on adulting. Our second oldest–and his name is Keith. Our second oldest, Allison, graduated high school in 2017. She has Down syndrome. She is currently still home with us. She was working part time prior to COVID, but she was cut when COVID hit and small businesses closed and has not found employment since then, so she’s home with us.
Isaac graduated high school last May. He finished high school in three years, and he is moved out and he’s currently a trainee with a ballet company. So I’ve had three graduate from high school. All follow very different paths, it’s very exciting to watch. My youngest, Josie, also has Down syndrome. She is 11 and is currently a fourth grader.
Natalie Danner: Great, talking about your youngest. What was it like in the beginning when you first learned about your daughter’s diagnosis?
Christy Lee: That was hard. It, we had a birth diagnosis, we did not know prior to her being born that she would have Down syndrome. So it’s very hard when they say to you, you have a beautiful baby girl but, and then they whisked them away to the NICU. It’s like wait, so that was, it was a kick in the gut. It was hard and at first, you know, they were saying, oh, we’re suspicious and we’d like to run some tests, so we’re suspicious and I’m like, okay, so you could be wrong—and we just saw a baby. So that was, that was very hard. And then fortunately, we were able to come to be in a good place about that relatively quickly.
And she was only in the hospital for a few days. So that was, you know, that was, and then we brought her home, and we had a 19-month-old at home, so we had two babies. And the beginning was very overwhelming because then all of a sudden people are trying to get you, they want to do all the evaluations for early intervention and all these crazy acronyms are thrown at you. Hi, I’m from, I’m from, I work for DSC but I’ve been sent by DHS to get you involved in EI. We want to do evaluations for PT, OT, DT, SLP, and I’m like H I J K L M N O P. I just want to sleep through the night.
So that was a little bit overwhelming. And honestly, we kind of sent them away and said, okay, do your evaluations and come back in six months. She eats, she sleeps, she poops, we’re not having any problems with those. So … go away and you can come back in six months and we’ll talk because we just want to enjoy time with our babies. So it was, it’s a hard kick in the gut to have someone tell you there’s something wrong with your child.
Natalie Danner: I can understand that. When your child was a little bit older, like 3, 4 years old, tell me about her experience with preschool and early childhood education.
Christy Lee: When Allison moved into preschool, that was a transition from early intervention. I’m kind of a take the bull by the horns kinda person, so I made sure I talked with the school and everything. And I have to say, her early childhood experience was very good. It was very inclusive. She was in with her peers, you know, she was a happy, a happy kid. I mean, when she was ready to move into kindergarten, the school was suggesting a more restrictive placement and we said no. We again said no when Josie reached that same milestone in life.
But I have to say early childhood was very good, but I think a lot of that is because while she did have some extra needs, we were fortunate there were no medical needs. They’re preschoolers. So all 3-year-olds need constant supervision by adults, right? So, her needs may have been a little bit different, but it was much more the same than different than it is as she gets older. So I think that made it nice, and the environment at the early childhood building in our district is pretty phenomenal. So that was actually a very good experience for us.
Natalie Danner: Sounds like a great experience. Yeah. So do you have any advice for early childhood educators that might be listening to this podcast when it comes to children with disabilities in their own classrooms.
Christy Lee: I do, I have kind of a list of things and a lot of them are probably things most teachers and people already do. But communication is key with parents. I think this is why early childhood was such an amazing experience because generally there is a lot of communication with parents, because even the most articulate 4-year-old is not the most reliable source of information. A 4-year-old who has communication struggles, you know, that communication is already there anyway. Whereas, as when they get older, that kind of changes when the students that are usually able to bring the information home and the child with a disability may not have those communication skills. So communication is key. That helps build a relationship.
One thing I say to teachers all the time is don’t be afraid. If you come across a student with a diagnosis you’re unfamiliar with or a behavior challenge you’ve never dealt with before. He or she, they’re still a child, and they’re a child first. So don’t be don’t be afraid of whatever that diagnosis is. You can do it. You’re a teacher. You know, the parents, we didn’t get a training manual when our children were born saying, “Oh, here’s how you raise a child with X, Y, or Z,” right? We’re all learning as we go and evolving. So, just don’t be afraid, don’t be afraid to make mistakes. Everybody makes mistakes, it’s how you, it’s, learning from them and moving forward, that’s the important part. But don’t be afraid of the child. And don’t be afraid to ask questions.
Meet families where they are. In preschool, I mean, I guess the blessing of Down syndrome is we had a diagnosis at birth. A lot of children who have learning disabilities or children with autism, they don’t necessarily get a diagnosis at birth, right? In preschool and early elementary school is when these things start to pop up. So you’re working with families that may just be learning that there’s something wrong with their child. Some may be embracing it and researching and doing everything they can, and others may not be ready to accept that yet.
So you’re going to be meeting families in all different parts of the journey and just be ready to meet them, meet them where they are. And when you meet the families, don’t judge them and think, well, you know, your child has X, Y, or Z. Why didn’t you get X, Y, or Z therapy? They may not have had a diagnosis to get that. You don’t, the picture’s a lot bigger than what you hear. I mean, and some parents have to make choices, even with the best insurance in the world. And even with awesome insurance, you could be limited to 60 visits a year. And that may sound like a lot, but if you have a child that needs speech therapy and physical therapy and occupational therapy, 60 visits a year is approximately one session per week.
And if you have a child that requires three different things, parents have to make the choices. They can’t always, they can’t always do everything and they want and need that time to be a family as well and just enjoy their child for who they are, and not always revolving their life around a therapy. So don’t, just don’t be quick to judge why they did this and not that because I’m sure there were reasons behind it. And I guess overall, the big picture that every time I speak to a class, treat the children and the families the way you would like your child and yourself to be treated by your child’s teachers.
I know teachers get very frustrated when parents, you know, they’re talking about a challenge that’s happening at school and the parents are like, well don’t see it at home. And the teachers get frustrated cuz they’re like, oh my gosh, these parents tell me they don’t see it at home. That’s so frustrating. That goes the other way. You know, school’s telling parents, “well this is happening,” and we’re saying, “well, we don’t, we’re not seeing the same thing you are” because home and school are different.
So both the parents and the schools need to be able to come together on that and acknowledge that things that are happening at home, be it good or bad, right? It could be a good behavior you’re seeing at school that they’re not seeing at home or it could be a challenge, you know it could go either way. But the families aren’t saying that to frustrate you. They’re saying it because it’s a reality. You know, things at home are very different than they are at school. Just the logistics of there’s generally fewer children in a home than there is in a school environment. So both, both parents and teachers need to be more flexible and understanding of that dynamic.
Natalie Danner: Thanks for those tips. I think they are really helpful and I’m glad you shared your perspective on that, especially the importance of communication between parents and teachers. I think that’s so important and something that doesn’t get a whole lot of attention sometimes when you’re going through your preparation as a teacher. But as you get into the classroom, you realize how essential that is, is working with family and really creating that bond to the family and understanding that the families are the child’s first teachers.
Christy Lee: Right, building that relationship is critical because if you have, even if they are just very short, you have a lot of the, I’ll call them small talk conversations, at drop-off and pick-up, if you’ve built that relationship, that’s so much easier if there is a concern, you already know that parent, you talk to her every day, it’s a lot easier to say, “hey, you know what, there’s something that, something that’s concerning me, I want to talk about it,” versus saying that to a parent that you’ve never really had a conversation before. So building that relationship and that open communication before there’s a problem is important.
Natalie Danner: Definitely important. So when we talk about your second daughter, how were her early childhood years a little bit different than your first.
Christy Lee: Her early childhood years are, she was in the same school district, so the school thing still went very well. I mean, not to say there were zero bumps, right? There’s going to be bumps in the road with any child, but the school went very well. But her early childhood experience was very different. When Allison was a 3- and a 4-year-old, it was only her and her one brother and he was only 19 months older than her. So our world revolved around preschoolers. That was our family world.
When Josie was in preschool, her brother was on the high school track team. Her sister and her other brother were dancing. That’s a funny story. We would, she was a tag-along kid, right? She went to soccer games and swim meets and dance performances and track meets. And we would sit on the opposite side of the field as everybody else because the bleachers were empty because she likes to climb up and down. And her brother’s like “my gosh, that’s so annoying, did I do that when I was her age?”
We said well, no, when you were 4, we went to the playground and the petting zoo. We’re not at the playground because we’re at your track meet. So this is her playground. So I mean, her early childhood years were different. But I think that just has, that’s the sibling pecking order in any family. You know, she was, there were six years between her and the next, her brother. So, and there’s a total 12-year span from oldest to youngest. So that was the biggest difference for her, I think, was just where she fell in the birth order that when she was a preschooler and a young child, the world didn’t revolve around her, but now that she’s 11, you know, the older ones are starting to move out and be on their own that she’s, well.
This was supposed to be the year of Josie, right, where she was going to get to do all the stuff she wanted to do. I wasn’t going to be driving anybody else around and COVID decided, you’re going to wait a year. So, you know, she’s kind of, kind of in some ways having an only-child syndrome going on. But the price she paid for that was she was the tag-along kid for the first several years of her life.
Natalie Danner: Right. Yeah. Birth order definitely changes the perspective for the children and the family, right. And I was thinking about your first, firstborn, and your youngest, and how different family dynamics are within all of the different children. So now when we’re talking about the pandemic, you mentioned this a little bit already. But what is life like now for your family during the pandemic and how has your parenting changed, especially for you and your youngest?
Christy Lee: Well, it’s very different because both boys are out of the house. Right? But we want to see them. We don’t want to travel unnecessarily, but to tell me that I shouldn’t see my child, you know, we’re not seeing them as often as we would like, but we are seeing them and we’re being as safe as we can. So that’s kind of hard. We were all going to get, we were all, meaning just our nuclear family, were going to go down to visit Isaac for Thanksgiving. Not his brother, but my husband, me, and the girls.
But we made the decision that, you know what, it’s not necessary for all of us to travel. So I went alone to see him, tested before, you know, did the whole, we were as safe as we could. But I felt I did not want my child to be alone on Thanksgiving, and he couldn’t come home. So, that’s been hard. And with Josie, the hardest thing is, I love being her mom. I love teaching her, right? And I also love playing with her. But having to be her mother, her playmate, and her teacher 24/7 is hard.
It’s exhausting. I need a break. She needs a break. She wants nothing to do with me. By the time my husband finishes work, she wants nothing. She’s done with me, even if we’ve had a great day. But I’m her teacher, like I’m there with her Zooming. I’m the person she has to play with because we’re not going to see friends, you know. And then I’m also, I also have to be Mom. So having to do all three roles 24/7 is, it’s exhausting and rewarding at the same time. But I think that’s the biggest change, having to be everything all the time. And trying to remind myself that I’m all she has. Like, she doesn’t have, she’s not going to see friends. Friends aren’t coming here. Now I have to kinda remind myself of what she’s probably feeling.
Natalie Danner: Yeah, it’s such a different world that we live in and especially for children who have an experience of what typical school is. And this year is just very, very different for them.
Christy Lee: I don’t think she fully understands what’s going on. I mean we tell her there’s a virus, there’s germs, and people are getting sick. But I don’t even know that my 21-year-old with a disability understands the seriousness of what a pandemic is. She knows there’s a virus. You know, they’re both great with their masks and all that, but it’s really hard. The summer was rough, when the playgrounds were closed. She was like let’s go to the playground Mom. Can’t sweetie, they’re closed. What do you mean? How is the playground closed? You know, she wanted to go to the pool. We can’t sweetie, the pool is closed. It was, you know, very challenging for her, but you know, we’re doing what we have to do.
Natalie Danner: Yeah, hopefully we are moving toward a change in how everything is going as far as with a vaccine and moving toward a different way of schooling and all of that. But now that we are talking a little bit more about schooling, we know that at least in our local area and in many areas of the state, families are participating in remote learning, and remote or virtual learning can work really well for many families and children and for others it can be challenging. Tell us a little bit about a school day in the life of your youngest child.
Christy Lee: Oh, my well, it’s very interesting. It’s very different. I’m trying to give her the independence to do things, but she cannot, she’s not as savvy with the technology to be able to, okay, you know the teacher will put a link in the chat box, okay, open the link and then on that tab and then come back to this tab. And then like the tab toggling, she can learn to do it, but not within the speed that she needs to do it to meaningfully participate in the assignment. So when she Zooms on for school, I’m in the room with her pretty much the whole time. I, you know, I’ll walk out to heat up a cup of tea or something, but I’m there the whole time, supporting her less and less, but I’m always there because I never know when that support is going to be needed.
So yeah, she has 2.5 hours every day of what I’ll call Zoom school. And then twice a week in the afternoons, she has meetings with her speech pathologist. Twice a week in the afternoon, she has Zoom meetings with her Sped teacher and those are one-on-one. So those, she can get herself logged on by herself. So I just kind of hang there just to make sure she stays engaged or if she needs a supply, needs something. Or if, you know, there’s a Zoom quirk. You know something happens with technology to help her with that. And then twice a week we have a private tutor that works with her. And then every day she has her asynchronous assignments that we have to get done.
My goal is to have it done before dinner time. Some days I’m more successful at it than others because, I like, she needs breaks in between. She can’t be highly focused. So on some days, the time is very fractured. I’m very fortunate that I was, I’m a stay-at-home mom, so the time is very fractured because I make sure she has a break between Zoom meetings, which is good. She needs the break. But then also, you know, give her a half hour, 20-minute, half-hour break, trying to get her back can be more challenging than others some days, but the day is very fragmented because it’s like, okay, I had 20 minutes here and 15 minutes there and I don’t want to try and work on her asynchronous work when she’s taking her 20-minute break.
So, you know, we get through it and the teachers have been very flexible when I’ve said, hey, you know what, she had all these extra things that afternoon. We did not get to the writing assignment or, you know, I know there were 11 words they were supposed to use in a sentence; we did four. And they’re very flexible with that. Even, you know, she has the accommodations in her IEP, but it’s challenging and I’m very thankful that I only have one child in school right now. I cannot imagine when my older three, at one point I had a kindergartener, a preschooler, and a newborn. If I were trying to help a kindergartener and a preschooler navigate remote learning while also tending to a newborn. It would be very different than it is now. I would have to prioritize.
So I guess for teachers, be understanding with parents because they might have, they might be helping multiple children while trying to do their own work from home, right? And I have to say preschool is critical, preschool is important. But if I have a third, fourth, fifth grade, or middle schooler who needs my help with some math and a 4-year-old who’s not tending to circle time, my priority would be helping the older child and let, give the other kid a coloring book. So I’m very thankful that I’m not having to juggle multiple children doing that because, because I can imagine the challenges. But I’m glad I’m not living it, but a lot of parents are.
Natalie Danner: It’s great advice for teachers, too, to really think about. It’s not just necessarily that one child that they’re working with, that their family is just concentrating on a 100%, especially if there, if they have siblings, too, and if they have their own job and all of those things—very important points. So when we’re talking about living during the pandemic, it really can take a toll on families, and you’ve described some of those ways really accurately. But there’s some positives too right? What are some of the positive nuggets from the pandemic that you hope might continue in the future?
Christy Lee: I don’t like remote learning, but I’m glad we’re doing it that way. And I’m not interested in sending my child back to school right now. And I’m glad that I see a lot of people really embracing it instead of it just being, I heard somebody describe it as a placeholder. This is just a placeholder until we get back to normal. I’m glad to see a lot of teachers are embracing it and trying to think what can we do with it instead of this is what we have to do until.
But aside from school, I mean, things like curbside kick up. Right. I know Wal-Mart was doing it before, but now that you can curbside pickup at restaurants and pretty much any store to a family, a family with a child with a disability, right? You have a child who has meltdowns. You have a child with mobility issues, or you just have three small children, right? To be able to just drive out to the store and pick up and grab what you need. Like, I really hope that stores keep that, because that’s a barrier for a lot of people to get, to get the things they need for their home.
One great thing for me is I can see what my daughter is doing in school. It was a struggle all through with my older daughter, and it’s been a struggle with my younger daughter to see the work. Neither one of them had the communication skills to tell me about their day, and I would want to have a conversation with them. What did you do today? What did you read a book about? So my window to their day is what the adults provided me in their folder in their binder in whatever came home in the backpack.
I don’t have that struggle now because I’m there, and all of the work is home. Now the teachers have that struggle, right? Because the work is at home, and they need to see the work that the students are doing. So that’s kind of been a golden nugget for me, personally, that I’m seeing my daughter’s work come home. And my hope is that because that coin was flipped, it will be less of a struggle in the future. And I think one thing that I think would be cool. I don’t know how the logistics of this would be worked out, but I think it’d be really cool to have maybe a shortened school week when we get back to normal. You know kids, go to school for four days and have that fifth day be a Zoom check-in or something, some sort of check in. And then the teachers have that whole day, have a big chunk of time to do their planning, their collaborating, rather than trying to do it in 15-minute chunks of time here and there. I think that would be great.
Natalie Danner: I wanted to thank you so much for being our guest on the Illinois Early Learning Podcast. So thank you so much.
Christy Lee: You are welcome. Thank you for having me.
Natalie Danner: And until next time, keep early learning at the forefront.
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