Back to School Feelings from our Listeners

In this episode we share our feelings and the feelings of some of our listeners about their kids going back to school.  

We talk about the perspectives of families:

• going to public school, 
• using home services, 
• and those who choose to home school.

Special thank you to the following for being willing to share their feelings on Back to School:

@estebana12345

@saratothebeth

@neurodivergent_girls

@meaminermom

@emily_pwalker

@alvesmomkickingcask

@shesthemann7

@anna.and.violet

@raising_rouses

@brkphillips

@shanm820

@hkwoodley

Ruby Moseley

Heidi Walton

@jricelujan

Di Ane

@farmerswife2008

@annabethburnham

Sarah Bytnar

Please subscribe, leave a review, and follow us on social media to know about upcoming episodes and to participate in this podcast.

Instagram - @raisingdisabledpodcast
Facebook - Raising Disabled Podcast

Transcript

Rhandyl: Hey guys, welcome back to Raising Disabled. Deonna and I are going to give you guys a recap of the last few weeks. We do this so that you guys can continue to follow us in real time and keep you guys updated on our lives and our kids lives. So there's not been a lot going on the last few weeks.

Thankfully, nothing dramatic or anything. I feel like my last recap was very 

uh,

Rhandyl: negative. That was a lot. Yeah, it was a lot. But, yeah. No, a couple weekends ago,, I went to Amarillo, which is , a little over a hundred miles north and my friend She had twins, and they were in the NICU there, they'd been there quite a few weeks and I finally was able to be healthy enough and have a free day to go visit them.

So, yeah. It was my first time back in. You've been so sick. I know. It's been crazy. Ah. Yeah. But, better now. Yeah. But, yeah. This was my first time back , in a NICU. Since. I was wondering. Yeah. And so, I think it crossed my mind, but I think there were other people that were a lot more worried about me than I was but.

Like who, your husband or your mom? No, like my mom and my sister, which they didn't even tell me they were worried about it until after. And I think even my friend , whose twins were in the NICU, she was, in the back of her mind, a little worried about, Maybe my PTSD, but it was definitely luckily it wasn't a familiar NICU, so that helped.

But, yeah, that's what I was gonna say. Like, totally different building, I mean, that helps. Yes. And their NICU is definitely a lot more chill than any of the NICUs that we were ever in. Yeah. Yeah. I believe that. There were definitely sounds and smells that were triggering honestly the Smell can get you.

Yeah. But the paper towel dispenser, I don't know what it was, but it was like the exact same ones that they had in the NICU at Texas Children's and the sound, I was like, oh my goodness, like this is so weird. Yeah. But It's random what can get ya. It was so random. Yeah. But it was actually good. I didn't have a lot of anxiety there.

And her twins , they were doing wonderful, getting close to going home. They actually went home this past week and so, they're doing well and healthy. But yeah, , I spent all day there just hanging out and talking. And we, got food and crumble cookies and they had this little lounge area and we just got to hang out and I was there for rounds and my friend introduced me to the main neonatologist on that weekend.

And yeah, she was like, this is my friend, Rhandyl her daughter was in the NICU for, and she was like, you tell him like how long y'all were, and so I went into the, a real short version of, yeah, this is where, and then of course he was like, where at and asking me these questions. And he got a really watered down version of Remi and even what , her medical complications today are and things like that. Right. And so they finish rounds and like 15 minutes later he comes back around and he was like, do you mind if I talk to you? And I'm like, oh boy. And he asked me if I would be okay talking to a family there that was possibly going to be taking their child home with, some medical equipment, things like that.

And so I said, of course and he had already asked that family whether they were comfortable or not. And they were. So anyway, I had a little chat with mom and it was, it reminded me, cause, , I just remember being in the NICU after a long period of time with Remi in Houston and I would have multiple doctors ask me if I would be okay talking to a family whose child was going to get a trach or, yeah. Anything like that. And so I, I was always comfortable talking with them and it was just funny that eight years later, here I am being asked in this random NICU to go talk to a family, but it was sweet.

Deonna: And I think. The way I view it is , how, like in the Bible, it says you have spiritual gifts. Like to me, I think that this has become one of yours or one of mine is being able to talk to somebody and show them this glimpse into the future. And that like, it is going to be a little better and it's going to be okay.

But they can see like, okay, this person is all right. We may not be great, but we're all right. And that's, I think that's encouraging to other families to see that their life's not over. Cause I actually felt like my life was over until I started talking to all y'all. So , it's good for them to see the other side of it.

Rhandyl: It is. And one of the things that like you're talking about, one of the things that stood out to me was , I had mentioned my son. In our conversation, and she was like, Oh, so you had another one after all of this. And I was like, Yeah, it took me quite a few years. You're like not a lot of genetic testing. Yeah, no. There were lots of decisions made before we decided to do that year as a child. But yeah she was like, Oh, wow. , cause I remember being in the situation where I was like, never, I will never have another child. So, well, that's hard when it's your first one. It's like, ugh. Yeah, and it was also, yeah, it was also that family's first, so, yeah.

Oh, man. But , I just felt like I was supposed to be there that day for not only my friend, but for that other family as well, so, anyway, it was pretty neat. For sure. That's cool. But what about you guys? What have y'all been up to lately? 

Deonna: We're going to talk about all this in this episode, but like we went back to school and did all that. And I did go to school with Allie some of the first few days because her nurse got sick and then her other nurse kid was sick. So, life happens and 

uh, 

Deonna: it was 

kind of 

Deonna: good. And I'll explain more later in the episode, but it was a good experience for me. And but definitely not the How this last week was going to be of my kids going back to school.

I had major like caregiver burnout. And so I was really looking forward to. Just being at home and it, of course, didn't end up that way because, I feel like nothing in our lives ever ends up the way that we thought, but I had these plans of like sipping tea and catching up on Emily in Paris on Netflix and that did not happen, but you know, it's okay.

But I did that today, so I've, I was going to say, have you finished it? I finished it. I finished it. So did I. We need to have a whole episode talking about. Gabrielle or Alfie, right? Yes. 

But but then today the exciting thing was we got, and I've mentioned this in the past, but Allie began the process back in January of getting this it's basically like a robot that feeds paralyzed people or people who don't have good control of their arms . And it's called an OBI, it's OBI. And back in January, we trialed it for a week. She loved it. And then they're like, okay, we have to take it back, , and we'll get insurance , it costs 13, 000. So, , like I don't have 13, 000 to throw at something that I don't absolutely need.

And so, as we've said many times, having a kid that has a disability is very expensive, even if you have great insurance, which me and my husband do. So, and Medicaid, I mean, it doesn't matter, but I know it doesn't. So, we finally, after appeals and denials and appeals and denials and I did a state fair hearing, which we talked about last time finally got the denial overturned, got approval.

They sent it to us. We got it today. We're And so it's, 

you know, 

Deonna: like with all things, like your daughter's new chair that has , the special wheels, like everything takes a little bit of a learning curve. So we're going through and practicing, but I mean, she ate her first meal tonight. It was a little chicken and rice thing I made and she ate it. Without very much assistance once we got it all set up. So it's like a learning curve on our part and hers too. But 

Rhandyl: yeah, I feel the same way with those wheels. We're all still, I had to, I've had to have the DME company come out like twice because I don't know, it's a user error. I don't know what we're doing. Like, it's the whole learning curve. 

Deonna: Well, and our DME had never heard of this before or, I mean, used it. And so we just figured it out on our own by watching the videos they give you, which they give really good instructions, but. Yeah, it was really exciting. So shout out to Allie's OT and her doctor and everybody at OBI because they helped me get it.

But Oh my gosh, it took nine months. Like I told the guy today, a person could have conceived and had a child in the time that I have tried to get this stinking thing. So, but it'll be nice because at dinnertime or snacks or whatever, she can independently eat without someone sitting there spoon feeding her food.

It gives her a little bit of independence and control over just like control. And that's something she doesn't have very much of. So, yeah, it's exciting. And so we're hoping it'll work out really good and. We're going to have to just test all the foods and see what works and what doesn't. Because it has to be like cut into little bite sized pieces. But, , pretty much everything, even soup. She's ate ramen, like all kinds of stuff, so. Oh, that's exciting. We're excited. So, that's pretty much the only exciting thing. So we're about to begin football with my son, which is going to be a commitment. So, oh yeah, it'll be fine. Junior high. Yeah, I know.

I know. He's excited, but good. 

Rhandyl: Yeah. So that's what we've been up to lately and we hope you guys tune into this episode. It was fun. , it was all about back to school feelings and we got a lot of good feedback from other caregivers.  

not only do I transfer my own child in and out of her stander very frequently, I transfer my pediatric physical therapy patient in and out of their standers every day. And Zing standers are thoughtfully designed. Transfers in general are not easy, but Zing took care designing a standard to simplify the process as much as possible.

All Zing standards feature a comfortable transfer height, a supine flat to load position, all support and positioning options like swing away knees, swing away trays, open bases that work well for single person lifts or using a patient lift. Zing also takes into consideration the number of transfers throughout the day between different pieces of equipment.

So they designed a stander that could position a child from supine to prone. It's a seamless transition from full supine to 20 degrees prone and provides a therapeutic opportunity found in no other stander. You can learn more at Zingstanders. com 

Deonna: Hey y'all, so it is back to school season and we were talking the other day, me and Rhandyl about how back to school just brings up all the feels, like good, bad, all the things. And so we asked our Instagram and our Facebook followers just like how they were feeling about it because you either have already gone back to school or you haven't.

If you live like where we live or you're going to in the next few weeks if you live somewhere else, but You guys had so many good comments. I love it when we ask you guys questions and you answer us because that's how we make this a more broad and inclusive place to learn from. And so we're so thankful every time you guys give us some comments.

So first me and Rhandyl are just going to talk about how we're feeling as we go back into another school year. And then we're going to read some of these comments and get into how you guys are feeling. And so when it comes to me and back to school, I was definitely very excited to have my mornings back.

I stay home and I work from home because I just can't have a regular job the way that Allie is anymore. , I don't know if it's possible for me, but I work from home, so I love making my tea and my little avocado toast and sitting down and watching one of my stupid Netflix shows and then going and working out and then getting my work done.

Yeah. And so in the summer, it's just different. I'm home with my kids all day, and I obviously love them and love being around them. But that caretaker part starts to take a toll. The, I don't feel like the mom part really is hard on me. I love being around my kids and watching movies and going places with them.

But the caretaker part is hard. And so, I'm always a little relieved when It starts up, but this year my nurses both got really sick or their kids were really sick the first week of school. And so I got to go to school with Allie and it was Oh, I thought I was going to be chilling at home.

Oh wait, no, I'm going to school with Allie. Just kidding. I know. And it caught me off guard to go, but it was hard because if she was going to a new school and as a mom of a disabled kid, just experiencing your kid, not knowing everyone and just being nervous and wondering If kids are going to even speak to her at all, that is like the most gut wrenching, excruciating thing I can, I've been through.

Like I told my husband, it's very difficult for me to go to school with her because. It's just hard. I'm sitting there and my kid is the most, there are some kids at her school with disabilities, but my kid is just the most medically fragile, disabled child at the whole school. And it's tough to watch, yeah. And she's in general education. Yeah. So, so it's like different. P. E. Yeah. Yeah, like P. E. everything is just, it's hard, cause I sometimes get in my head like, what would she have been like if she wasn't paralyzed? And so I started envisioning oh man, she would have been running around or on the swings or this or that.

And instead she's just sitting right there with me. Not able to do those things. And so, yeah, long story short, it was hard on me, but she went to a new school and everybody's really doing a great job being inclusive and little kids are just coming up to her left and right and talking to her and she's just making these friends and it's something that I will never take for granted, like when a kid.

comes up and talks to her or just basic things that I think a lot of other parents take for granted and it is hard because I basically had to witness like firsthand her meeting people, making these connections and trying to encourage her to have confidence to, like out there, like Allie has resting B word face.

And so she's She doesn't like I'm like, how are you? Okay. She's yeah. I'm like, well, your face looks like you want to kill everyone in the room. Like you need to smile. So we work on not looking so like mad all the time. It's funny. Oh my gosh. How funny. But it, at this new school, it has been good and it's still very scary and she's making those connections.

But yeah, that was not the beginning of the school year that I thought we were going to have because sometimes I like to just not be a part of those initial parts because it is so painful to me as mom. And it's easier for my nurse to go with her. She doesn't have as much skin in the game as I do. Well, sure.

Of That would be really hard. It's still even hard for my nurse. I mean, she's just I want her to have friends. Oh my gosh. This is so scary. Like even she feels that way because she loves Allie so much, but. Of course. Yeah. It was weird, but the last couple of days I got to stay home and live my life.

Me time is very important. Getting your. Oh my gosh. Time yourself for a change. , I've found this new phrase that says . My alone time is for everyone's safety, and that is 100 percent me to a T. So, how was back to school with Remi? 

Rhandyl: Well, , when I started thinking about this episode and all the comments that we got.

It just took me back because we have, some caregivers and parents where their kids are starting school for the first time, some that have been in school for a long time. And it just made me think back to I'll never forget when I, Decided I just had this immediate change of heart about Remi going to school.

So, for those of you that haven't heard Remi's story, you can listen to Rhandyl's story. It's one of the first episodes that we put out, but she was hospitalized for the first 15 months of her life. So she was over a year old, but when she came home, super medically fragile. And when she was getting close to turning three her therapist and our care team started talking to me about school. And I was like, no way. Yeah. I've been told for the last two and a half years that if she gets the common cold, she could die. There's no way I'm sending her to school. Yeah. And we went home where we're from to one of my nephew's birthday parties.

And they were all like three and four years old kids. And I remember taking Remi in there and she'd had a really rough summer. It was soon after her airway surgery in Boston. And I remember just being nervous about having her around all those kids in the first place. But I was like, okay, , we'll see how it goes.

And. , it was like really the first time she had been around a lot of children. Right. And she lit up. I mean, she was so excited. I'd never seen her that happy in her little life. Yeah. I'd never seen her so happy. She was just extremely excited to be around all these kids.

She was watching them. She was happy hands. She was smiling the whole time. And from that day, I was like, I told my husband, because he was on the same page as me like, no way. She can't go to school. Yeah, it's too scary, especially that young. It is. And I changed my mind right then and there that was in June.

And she started school in August. And It was the scariest decision probably that I've ever had to make. One of, oh, for sure the top five. And of course she goes to school with a nurse. But I remember the first day I dropped her off of course I had met the teacher and she is wonderful. She was so experienced, had like decades of experience with kids with high medical needs and anyway, but it was, it was. hard. And , she didn't go all day. , she only went three days a week in the beginning, half days. I was like, we can't do the whole day thing. I don't think she could tolerate it.

And I got picture updates and she was just the happiest little girl and her social skills just started to flourish from school. And just all of her developmental things. And I knew it was the best decision, but I just remember that first day. I got in the car and I couldn't even drive, I, like I couldn't even see, I was just crying so hard. Oh yeah. I was like, what, am I, hope I'm doing the right thing. It's so scary. It is. To just trust trust the system, man, but now, five years later, just seeing how much she loves school, it outweighs my anxieties about it, obviously. And like I said, nurses go to school with her every day. If we don't have a nurse she doesn't go to school.

 Remi's always been in special education classes. So there's smaller classes. There's multiple aides in the class. And they accommodate her needs, and she just thrives with routine. And so summers are really hard but I also thrive with routine, so I was looking forward to it. Yup. , like I said, her social skills just continue and continue to improve, and I'm super proud of her, and I know most of that is because of school and it's funny to think back because I remember when she started school, my husband and I were like so worried that she was going to get picked on or bullied.

And my husband , always made the joke, like the first kid that bullies her, I'm going to find their dad in the parking lot and beat the crap out of them. And we laughed about it, but we were so worried about it, and now, this year, the little stinker has started crawling over to her friends and pulling their hair because that's her new thing, and I'm like, oh my gosh. We were so worried about her being bullied, and now she's the bully. Your husband's gonna get beat up in the parking lot. I know! I'm like, you better watch out. You better watch out. They're gonna get you. I'm like, Remi. 

Deonna: Parents of disabled kids are so feisty it's not completely out of the question. No, for sure.

Rhandyl: Oh my gosh. But, yeah, so. Of course there's fear every day that something's gonna happen because it has happened. Oh yeah. There's been multiple times where I'm driving. For y'all especially. Yeah. There's been multiple times where I get a call from the school. I'm driving a hundred mile an hour down a 30 school zone speed limit and get to the school and it's, emergency situation, take her to the hospital. And so of course, after those experiences, the anxiety is even more to take her back. But like I said, though, she loves school and she thrives in the environment. And the good outweigh the risks and we just have to give her the quality of life that she needs. 

Deonna: So well, and it's funny cause like with me, I've learned to trust my nurses that take her out. But like the other day we left school and she did fine in school, with the medical stuff. But we drive out onto a major street in our town and her ventilator , disconnected from her and we're out in the middle because we were turning into sonic and I'm like She's like starting to panic because she can have a pretty serious desat within just a few seconds of being on Oh, yeah, like yelling at her breathe I'm trying to get off the street and like I was like, do I need this? completely just Park my car in the middle of the street and hope people don't hit me so I can hook her back up. But luckily she was able to keep it together. But I mean, even when you're with them, stuff can still happen. So, it doesn't matter. It can happen with us or anybody, but , there's just a lot of unknown variables, but yeah. 

So we're gonna get into the comments from our friends from Instagram and Facebook now and if we mispronounce y'all's names I'm sorry in advance because we don't always know So I'll read these first ones are gonna be from people who we assumed go to either like a public or private school setting like the more traditional school Setting that you would be familiar with.

And so the first one is from Estabana12345 and she said, my little is starting kindergarten this year at a public school. He will get to be with older kids for recess and lunch and specials, which is like the PE music, all that stuff. And I'm just praying that the kids will be kind. He still does not quite get that.

He's not like the rest of them. So I just hope they're patient with him. And I, yeah, I can relate to this a lot. Allie knows she's different than everybody else. She's painfully aware of it, but I mean, that really is, I feel like that's the main thing all of us want is just for kids to be nice to our kids.

And that can be such a huge range of what we're asking from kids. And we know little kids aren't all little. Disability experts on advocacy, but I feel like they sometimes are better than adults when it comes to just being natural with kids like Allie. But I felt this comment because I was seriously praying all day when I was with her, when I was not with her. Please just have a kid come up to her and smile and say hi. That's all I'm asking for right now. For real. And a smile and kindness and just like even a small conversation at first because it is intimidating. Is huge to Allie. It's huge to Remi. I mean, and when you're non verbal.

People sometimes, I think, are like, and , this is how I used to be. Like, if I saw a kid and I didn't think they could communicate back to me, I felt like it wasn't worth it for me to go talk to them because they couldn't talk back to me, but that's so stupid. You always assume someone can speak to you and even if they can't, go speak to them and talk to them and have a conversation with them. It can be one sided it doesn't matter. Just do it. The majority of the time they know exactly what you're saying, they just may not be able to communicate in the way that, that we can. So yeah. And you can tell when kids get it, like you're complimenting their shoes or, I mean, it can be just something basic like that. Yeah. And it's huge to. The kid, it's huge to the nurses. I mean, it makes Hannah feel so good or Heidi when people interact with Allie. Like it's, for everybody, but yeah seeing Allie make connections was huge. I mean, having kids talk to her, I was about to cry, like legit as a mom, like that would be so hard to be at school.

I feel like when you're walking outside for recess, I'm literally like, please have someone. Come talk to her during recess because she can't go play there's no concrete. There's just gravel. So, she can't go play with the other kids. So just please anybody, but yeah, these little kids who've been speaking to her when I was there they're my new favorite people on the planet. I'm like, I love you. I don't know you, but I love you. But how do you feel about this comment? 

Rhandyl: Yeah, it definitely hit home for me because my daughter is in a similar situation. She's a few years into it, but she goes to specials, recess, inclusion, and classes with the gen ed kids. Yeah. And I feel like the teachers are very accommodating and I always try to make sure and ask especially the inclusion teacher class that she's going to be in to explain her medical needs in a way that they can understand. And? Um, In hopes that they're not uncomfortable around her. And like you said, I've noticed that kids are the most accepting of Remi versus adults. Like, They can see past it all, and once you explain it, they're like, oh, okay, cool. And they probably want to push her and do all these things. Yeah.

Yeah. It's been good. Inclusion's been good so far. . And one of our neighbors, they're the same age, and he is in her inclusion classes, and , he always goes up to her and tells his friends she's my neighbor, and we go swim at their house, and, he'll even say like, she talks with her device, and it's just really cute, to have a peer that knows her outside of school to explain her to his classmates and her classmates about it, so. That's really cool. I love that. Yeah. 

So another follower @saratothebeth, , she said that it makes me feel like I have zero control. I can plan plan, and still fail miserably, and I feel like we as caregivers all feel this way. We can never plan enough in this life. No. Yeah. No. Things are out of our control. And. It's so hard to let go of the reins. But we all know that no amount of planning can change the fact that we are all human and they're all human at school and things are just going to happen.

I mean, for example, you get all the bags, all the things together, Remi, she has to eat specific foods, and she only likes specific bowls and spoons. And of course, I've forgotten things. Forget her spoons and her bowls extra change of clothes or not enough clothes, or I forget an important piece of equipment, the Ambu bag, like whatever. The list could go on and on of things that I forgot to send her to school with that I, get a call from the nurse. After they get there and I'm halfway to work and I'm like, oh gosh, okay well, I'll be there as soon as I can and so it's just it happens But it is hard knowing how much you Work to make it all perfect that it's just never gonna be perfect 

Deonna: No, well, and I mean like we planned out Allie's first week or two of school to a tee I mean we talked about it for weeks and then nurses get sick and those types of things and I feel like I Used to not be very good with rolling with it. I'm very Like oldest child uptight psycho type. And so it was really hard, getting into this life because now I just have to be like, Oh, well, well, we'll just do what we got to do. And that's not really actually my personality at all. 

But what I noticed from this comment was how she said she can plan plan, and then fail miserably. And, to give her some grace, like I, I don't think that. Things going differently than the way you planned is her failure at all. I mean, I think planning is love. Like when you plan for your disabled kid, that's one of the ways that we love them. And that's just life, like things are gonna go wrong and it's so frustrating.

Rhandyl: And yeah, you have to give yourself some grace because there is. It is impossible to get it all right, especially in this caregiving life. 

Deonna: I don't know this girl's exact situation, but we have to rely on so many other people. Oh yeah. And that's hard to do. We can't all take care of everything. There's so much outside of school you can't control. Even at school when I was there I wanted to control every situation to make it perfect for Allie, but I can't do that. I'm not the teacher or the principal or, so I just had to be like, Oh gosh I hope she's okay doing this, see that would be so hard for me.

Yeah. Oh no, it's like on the verge of tears all day, every day. But. I make it through it and I do it enough to where it's not like I get used to it, but there's certain things that just like controlling where kids are going to sit in the cafeteria. I can't control that. Kids either are going to sit next to Allie or they aren't and Luckily they did, but , oh my gosh, , I wish I could plan out her whole day and make it perfect for her, but that is not happening for any of us.

So our next comment is from @neurodivergent_girls and she said she's excited for her daughter. She returns to a brand new school and secondary ed, which is going to be the middle school, high school type. situation. And she said the daily routine helps us all so much. And the routine part stuck out to me , I'm pretty sure most parents of disabled kids have the same feeling of, as me when it comes to routine. It's a safety, like a safe feeling for me to have that because my life is so unpredictable and so chaotic. I don't know if my child is gonna be here next week. It's just crazy life we lead. And so, having It's like routine or I don't know, like stability is huge because our lives are so unpredictable, 

Rhandyl: yeah, for sure. And this kind of stuck out to me. I know she's moving schools like to go up to middle school, but. But from my experience we've had to switch school districts because we moved, and that was about three years ago, two and a half years ago, and I just remember the new school situation, the new school district situation was very nerve wracking, but it was actually a pretty smooth process, and smoother than I had expected.

And so, hopefully that goes well for her daughter as well, because it is a very scary situation, we have the same faculty, the same teachers for three years and then you're so nervous that Things are gonna go okay, but yeah, so 

Deonna: well and one of the reasons we switched Allie to a new school was to expose her to These kids that she will go to middle school in high school with because that wasn't gonna be the case at her old school But I mean moving into that secondary ed Yikes. I mean, kids are mean, but I feel like in the grade where like my son is right now, like that 6th, 7th, 8th, it just gets worse. Like some of the stories he tells me, I'm like, Oh my gosh. And my daughter's gonna be in the mix of all that. Yeah. And I'm just like no. Hopefully people won't make fun of her, but somebody at some point is going to make fun of her. It's going to happen. She's going to hear it. And then, yeah, we're going to have the same feeling your husband has where we're going to , want to rumble in the parking lot with somebody. But you know, it's, that's a tough move into the secondary world for sure. I'm. Like I'm with her on that one. It's a little anxiety inducing.

Rhandyl: For sure. So another follower, @meaminermom, she said that she was anxious because her son ended up hating school last year and every morning was rough. And hopefully he'll make a friend this year and and she's excited to have the mornings to herself to get stuff done, Yes, I understand this girl.

Fortunately though, I have not had to experience this Because Remi loves school, she always has, and gets excited to go to school. And so I cannot imagine the heartbreak that must cause. And Deonna, I know that Allie's had troubles with feeling left out or not accepted. And so what did you take out of this comment?

Deonna: Well, Allie does like school for the most part, but there have been times, and this is our mistake, Allie knows in her IEP that she basically can come and go to school as she pleases, and so there are times where she's been like, I don't want to go to school today, so I'm not gonna go, or I'm gonna go late, I don't wanna go.

Be there. Like every Friday, we have a problem with Allie because she doesn't like the mascot for our school. It's this like big tiger. And it's supposed to be fun, but the tiger and like the football team and cheerleaders come to the elementary schools and see the kids. Yeah. And so every Friday she's I'm not going to go to school till nine or I'm going to go later. And I'm like, no, you're going to be fine. But yeah, she doesn't want to go on Fridays because of that reason. Like today she's is it game day? Cause I was getting her dressed up in her little cheerleader game day look and stuff, and I was like, No, it's not game day. There's no game today. Cause she does not like that stupid tiger, but I mean, she would be okay with going. Like she wasn't crying or anything, but she was very nervous. I mean, yeah, the social part. And to me, the part that stuck out was just like. 

Like, all of us just want one friend for our kid, like we're not even asking for them to be the most popular kid in school. We just want one kid and it's so hard when you're there. And I'm sure this mom has witnessed this at some point, all these kids in their little groups and they're talking and then your kids on the outskirts or, and it's just and I know non disabled kids go through this too. It's not like just our kids. But yeah, , it's really scary when they're going there and they don't have a nurse like our kid, Allie has a built in buddy everywhere she goes. I cannot even imagine not. But if she didn't, oh my gosh she would be way more nervous, I think.

So yeah. Yeah, I felt this , It'd be so hard making them go if they're that anxious, but then her she wants her mornings like Right now is so if she doesn't send her kid to school. She's gonna be so burned out I think so. I mean it's a it's hard when you have to take care of yourself too. And the kids like, forget you . Leave me at home. I wanna you, I know it's a double-edged sword. Yeah. Yeah. Oh yeah. That one was tough. I get it. . 

Our next one is from @emily_pwalker and. She had some tough feelings. She was just saying she feels a lot of guilt, resentment, anger, and just the constant thought of why aren't we there yet? I'm assuming with kind of just like meeting milestone goals and things like that. She said, , will we ever get there? And she said her daughter has her first IEP this year and it's really nerve wracking. And IEPs. Can be intimidating if you don't have like me and you both have these like bulldog personalities.

So it's we're not that nervous about things like this, but it can be really intimidating. You walk into this room, there's 10 professionals who are wanting to be like in and out quick and I don't know. It's just, it's a really intimidating process to go through. And It is hard when you're a kid. Like you probably can speak to this one a little bit more because Allie did meet all of her milestones and then she got hurt immediately after meeting all of her milestones basically. And so I don't know what that feels like to be like, I know what it feels like to compare, but not like in the milestone type way.

So how do you feel about this? 

Rhandyl: Well, I'm just for one, so glad that she is getting an IEP. Because this should help tremendously of how the facility manages her daughter's educational needs because it's so important to especially when you're having these issues. Why aren't we there yet? What things can we help move things along? We help the faculty understand your child's needs. You have so much more control once you get these IEPs and these ARD meetings or whatever state you're in, what they're called. But , I think she's definitely on the right path of her daughter getting a better educational experience with starting an IEP. It is super nerve wracking like you said, but it'll be totally worth it. And hopefully she just demands what her daughter needs and they have to abide by it. I mean, they do. So, yeah the next one is @alvesmomkickingcask and she said for the first time ever nine and a half year old child. She said, I'm so excited knowing that she's in the best of hands. She had a new school last year, same teacher this year. And I think it's the first time I won't be crying in the parking lot. 

So my daughter also, yeah, Remi also has. It's the same teacher as last year, and she is absolutely wonderful 

Deonna: in case people don't understand. A lot of times when you're in a special education situation, you can have a teacher for many years in a row. Right. Whereas in the regular classrooms, that's not the case. 

Rhandyl: Right. So, In Remi's school district, they have they call them life skills, but it's basically , special education. And so, they have all the kinder and first graders are together, and then first and second graders are together. Third and fourth something like that. They usually have just like two classes in one, like , two age groups in one class. And so last year, Remi was in the first grade and so she's still in the first grade. still has the same teacher in second grade and right next year she'll have a new teacher which I know the next year's teacher as long as it stays the same. I'm really excited as well for her because she's wonderful. And she's, you can't quit. Yeah, no, do not move. Do not do anything crazy. No, but yeah. So I felt this because even this summer, Remi had her in summer school. And so. I had really no, nerves about her teacher and it's the same aids and everything. So just new students and there's a few new therapists , but other than that, yeah, , I felt this comment for sure cause that's how we felt this year. And it's definitely a relief and good teachers are key for everything special ed children. Yeah. 

Deonna: Well, and having that familiarity, like I've seen so many kids like Remi at the baseball field and one of her teachers will be there. And Remi loves seeing her out, like she loves it. And I've seen so many teachers come out to these baseball games and they'll have four or five different students out there on different teams. And those kids. , it's just this connection that I feel like is not even achievable in the regular ed classrooms. They love their teachers so, so, so much and it's so cool how they can have them multiple years because it is just like a little, like we were talking about I've seen parents, when a teacher quit, one of our friends the daughter's teacher went to go do something else. She was devastated. , it's the teacher is the biggest component, and it's hard when they lose on or they have to move on or something. I know. It's hard. Yeah. . Familiarity is huge. 

So the next one is, @shesthemann7 have you seen that movie, She's the Man? I don't think Have you ever seen it? I don't think I have. Oh my gosh. , you have to watch that. Okay. It's the funniest movie. On the planet. But anyways, I love that name. This girl said she totally freaked out today and ended up on the phone with his entire care team at school.

So not sure what happened, but honestly, it could be anything really. Oh, yeah. I mean, it could be anything. But the thing that stuck out to me is I had wanted this year to be a very unknown parent. I didn't really want them to have interactions with me. I wanted to be able to just be anonymous, like all the other parents get to be, 

kind of. 

Deonna: and then 

Like, 

Deonna: it was so funny because I said Oh yeah, hopefully you guys won't see me very often. This was like on Wednesday, I say this, and then I go , almost a whole next week with her. And , I was like, not only are you guys seeing me, I'm in your room. This is so embarrassing.

Oh my gosh. And so, yeah, I, I didn't get my chill unknown. Debut with this new school. It's like we talked about earlier, plans. Ha. Yeah. And there's nothing that, cause I used to be a teacher for six years. There is nothing that a school hates worse than a parent just being in the school all day. Watching how they handle everything. I would be very nerve wracking for the teacher. Yeah, I could see that. I'm watching everything they do, and not in a judgmental kind of way, but I'm in there, and, whatever. I'm definitely, Noticing how they treat my kids. So they're, probably Oh gosh I've got to be perfect all day, but yeah, don't get to be unknown.

Most parents of disabled kids are known very well from day one. We have even the other day I was walking out of school and Allie's school doesn't have a button. To push to open the doors and this mom or , I don't know who she was, but she came up to me and she's like, why didn't you push the button? And I was like, Oh, they don't have a button. I'm going to talk to them about that in my meeting, how it would be easier if we had a button and. The mom was like, I'm sorry, but no, this is just unacceptable. I'm going in there and talking to them about this right now. Like you need a button. And I was like, okay, please don't mention my name. Make this come from you. Not me. Oh my gosh. But yeah, she was very feisty. I was like, okay, I like her. How do you feel about this one?

Rhandyl: Oh, I like this mom because it reminds me of me. I'm like, good for you. Advocate and demand the best education and social environment for your kids. So, I mean, faculty has to be on board and follow your child's needs and their education plan from day one. And if they're not, call them out. Because I actually had to do something similar this week. There's a new therapist. She has two of the same. She gets OT, PT, and speech at school and she has two returning and then one new one.

And They had their first visit this week , and the plan didn't follow our typical IEP plan with speech. And so I got her contact information and we had to have a little bit of a come to Jesus meeting on the phone, but she was very accepting and nice. So I've talked to all of her therapists or teacher everything because. Yeah. Yeah. Our big meeting is in September, and I know there's a lot of paperwork that goes into that, and I'm like, you guys need to get all of this figured out before we're in this meeting, because I, trust me, you're going to have to redo all your paperwork if I don't talk to you beforehand. Yeah, it's better. That's yeah, so I totally felt this because, yep, , I've had to make a few phone calls already this year, but it's been accepting luckily. 

Deonna: I'm nosy, so I want to know what happened at her school. I'm so nosy. Me too. I'm like, yeah, so am I. I'm like, okay, we'll message her after this and ask what happened. Yeah. . 

Rhandyl: Our next follower, @anna.and.violet they said relieved we're only a couple weeks into summer holiday, wherever they're at, and just the lack of mental stimulation and socializing has been really hard for her daughter, 

I , I can totally get this because summers are so hard for us too because my daughter's really social and I know she gets so bored at home most of the summer. We try to keep her socialized. She goes to summer school, but it's very short periods and only a few times a month and we used to put her in a parent's day out program. She's aged out of that now, like her off weeks from school. This summer was the first summer we didn't do that. And so we're just waiting for school to start every year. I feel like because she just needs that and her sleep schedule gets all off and so yeah, we were excited and relieved also when school started

Deonna: Yeah, I feel a little bit of that too. And I, it sounds like this girl doesn't have, the support in the summer, which is hard, Allie gets bored too. It's just a lot of being at home, especially this year, since she had that big surgery and stuff. Like we couldn't really take her out that whole first month of summer. And then we could after that it wasn't too bad, but I'm always relieved when she can have more social interactions and it's hard because Allie can't just go play at someone's house and me drop her off and stuff. They have to come here. It has to be, like, it's just so much different. So much more planning and things go into it and everything. And you really have to have a really good friend who comes over, cause it's just not your typical situation. Not at all. Yeah, having that can be a long summer break when you don't have a lot of stuff going on like that.

So our next one is from @raising_rouses, and she just said, overwhelmed, inadequate. That's all she said. And I was like, yeah. It is so much to get the kids ready for school, get their caretakers ready, help the school get ready, like our school actually, I mentioned this last time, but they called us ahead and were like, hey, let's just hash out what she needs beforehand because the IEP is not for 

like 

Deonna: six weeks, so let's just talk, and that did make me feel a thousand times better since it was a new school.

Yeah, I really liked them for doing that. But I mean, even just going and doing those things and having to tell all these people what happened and what they're going to have to do and all her. I mean, it's outrageous, the things that she needs done. And and then getting yourself ready to trust all those people to do what they're supposed to do and to not, like slack off. It's just when you're not there, it is a very overwhelming feeling. Yeah. Yeah. I don't feel the inadequacy part as much, but I do feel the overwhelm a lot. 

Rhandyl: Well, I was going to , talk about the inadequacy part. I feel like there's so much pressure on us as caregivers when it comes to school. I mean, there is. We have to make sure. That the IEP is the most beneficial for our child's needs because we know them best. We have to sit in these meetings and we have to stand up to the principal, the diagnosticians, the therapist, and all the people. And it's super overwhelming. I've had to do this for five years now, and it's not an easy process, like you said, it is stressful and a little overwhelming and I can see how some caregivers would definitely feel inadequate in these situations, but 

Deonna: Well, and when you're new to it I guess, , when I was new to it, I did feel really stupid going into a meeting, telling them how it was going to be, when I didn't even know for myself, like what, you Should happen. So yeah, I guess I could see that part. 

Rhandyl: I remember taking, I remember taking so many people with me. , my first ARD meeting took 'cause they knew more than you at the time. All the therapists? Yeah, all of her home health therapists. I took all of our nurses I mean I had about as many people in there as it as the faculty did just because I was like, I need y'all support. And they're like, oh, okay. But that particular diagnostician, she was really intimidating at that district and I remember having to really stand my ground with her and we would butt heads a lot but I always got what Remi needed. Yeah. So, yeah. You'd win. 

Our friend Brooke @brkphillips she commented, she said it, just feels heavy, like wondering if it will kiddo. That's typical. That's typical. And. I know it won't, but then she always just still wonders and, I think we're human and it's our nature to hope for a quote unquote normal but then reality slaps you in the face every day and I don't think that this feeling will probably ever go away. Like for me, it's faded over the last five years of Remi going to school, but it's just always there in the back of your mind. But yeah, what do you think about this? 

Deonna: Things for us are obviously way easier than they were a year ago, but it's still so hard. And I know it's never going to be easy for her ever again. Like it's probably never going to be easy for Brooke's son ever again. There's always going to be something and you're just like, man, like it's, I mean, that's really heavy. And yeah. 

The other day I, when I was at Allie's school, which is reason number like 450, why this is hard to go to school with her. But I heard this little kid who actually is one of her new friends and I like her a lot, but she was asking Allie how many years it would be until she was healed and they could play on the playground. And I'm just like, ah knife in the chest when I hear this. And I know the answer to this question.

Allie knows the answer to the question. We haven't like full blown just told her, Oh, this is forever. Get used to it. But she knows this is a very long term, serious situation that's not going away. And I'm just like, kids are. Kids think oh, you broke your leg, you're going to be fine in six weeks. That's not how disability works. And so, it is hard, like what Brooke's saying and we've talked to Brooke about this this isn't temporary. This is a thing. And it's going to be, it's just always going to be hard. Our lives are always going to be hard. And that just. Is gut wrenching, but 

I will say about Brooke's other son that's in Allie's school, the one that is typical, he says hi to Allie every day and it just makes her feel so good. I'm like, I love you. I love that. I know, he's adorable. 

Rhandyl: If you guys want to listen to her story we have an episode with Brooke Raising Corbin. Yes. So it's a good one.

Deonna: So our next one is from @shanm820 and she said she's nervous and excited, happy to get back to routine and excited that my son loves his teachers and aids, but dread the early wake ups and busy mornings. And I, we need a video, what our lives are like in the morning, because I mean, like this morning, we're training a new girl who's like amazing.

And we love her. But I mean, you are like freaking out all hands on deck. Someone's putting a shoe on while somebody's getting her mobile while somebody's do you know, brushing your teeth? I mean, it is chaos, all the things we're doing. And when our nurses get trained up, they do most of it without us, but , even just doing all the mom stuff is crazy, but oh my gosh. And when we don't have a nurse, forget about it. You're frantically trying to get ready to go. , 

Mm, 

Deonna: the early wakeups and stuff, whoo hoo, I get that part. 

Rhandyl: Yeah, this was my exact thoughts going into this school year, the early mornings and the rush of making sure everything gets to school with her, it's so much work, I mean. Yeah. And for example, like this morning, the school bus keeps getting here earlier and earlier. They were here at 6 45 a. m. That is not okay. And I've told the driver, I'm like, Our shift changes until 7 the nurse that's going to school with her, they will not be here, they have to get report, they will not be getting on the bus. Oh my gosh, I didn't even think about that. Yeah, I'm like, and then, so they've at least learned to not park in our driveway so that the nurses have somewhere to park. Yeah. Until they park and then they come down the driveway. But it's it's a new bus driver, and so, I'm trying to explain to them This is how it works. Sorry, you're gonna have to wait on us. 

 But you just get this rushed feeling like the bus is here and I'm still doing her hair But literally we can't do anything until the nurse gets here it's just really like early mornings because I mean she's on the bus Right after seven every morning and and they have like over an hour of treatments and things they have to do. I mean, it's not past, oh, there's so many breathing treatments and I've gotta prep all of her food, get it in their bag. Mm-Hmm. like, You know it, and not to mention making sure all of her medical equipment goes to school and her wheelchair wheels are charged. There's just so many things , but it's just. Oh, I dreaded the early mornings. Yeah. So this comment, I was like, yeah, I feel you, girl. 

Our next follower, @hkwoodley, she said, nervous but hopeful her daughter has had the same teacher for all three years and that she's been in school. And the teacher's lovely and totally exceeded all of their expectations. at every step and the thought of starting over with someone new and learning to hopefully trust that person in the same way is scary, but I feel hopeful and optimistic that we'll meet another supportive teacher. I'm always worried about the unknown 

and. I can totally relate to this because we experienced the exact same thing. She had the same teacher for three years and she was the best ever teacher. She was wonderful with With these medically fragile kids and then we switched schools, teachers, classmates, everything, the whole faculty, new district, and it was like, oh my gosh. It was, yeah, super overwhelming, but it ended up being, a good thing. There were some hiccups. We had to just make sure everybody understood, had to, call in meetings and things like that. Oh yeah, for sure. But it eventually, it's just, it's just a process for not only us, but the school too, taking on, especially kids like us that have so many medical needs for them to understand. And get with the plan basically. Yeah. 

Deonna: Oh, yeah, I get that. Oh my goodness so our next comment is from @rubymoseley And she said mine is already mine has been ready since we got out in may She has the most fabulous group of kids in her grade that are fiercely protective of her My mama heart is anxious about middle school next year But we're gonna soak up every bit of being in fifth grade for another year You And the part that stuck out to me is I love disabled kids need feisty friends.

They can't have these wallflower type friends. They've gotta have some feisty ones and I think that'll serve them well throughout growing up. It'll help them, but I think my daughter needs. And , I'm already seeing some kids be that way a little bit. And I'm like, okay, this'll work out. But yeah I can't even think of middle school right now. Like we were saying, it's Oh my gosh. And you hope that those kids who were feisty with her and. We'll continue and we'll be in the same class as her maybe once a day. Or, I mean, that's, what's so hard is all of a sudden. You may not see them very much. So we can't even go into middle school as far as I'm concerned right now. I'm like, no. And I know all these parents are like, yeah, it sucks. I need to hear from people who've had a good middle school or high school experience. Cause oh my gosh, I'm nervous about that one. 

Rhandyl: Yeah. So this, It's amazing to watch how much classmates learn to protect and love on your kids. So for example last year I'm sad that this particular kid. He's a year older than Remi. So he's in another class not her classmate this year, , but he had this love and protection mode for Remi. He was always beside her. He had to sit beside her in every class. He had to be that right there. He could tell when her circuit got disconnected. , he would watch the nurses, just watch them and learn how to like he would help them turn on and off the suction or he would touch her back and a little baby nurse. And then point at the nurse and tell basically, in his own way, tell them that she needed to be suctioned and if someone got too close to her that was like, say a behavioral kid, he would just be like. He would get in between them and it was just so amazing to hear about it. The nurses, they got to witness it every day and they were just like, it's amazing. He is, he just loves her. And he's seen her a few times already. The big brother mentality. Yeah, for sure. And I was like, heck yeah, I love this kid. But hopefully next year they'll be in the same class again. Oh my goodness. Yeah, 

Deonna: you're like, that's part of the IEP. She has to be with this child. 

Rhandyl: Yeah, but I guess of junior high thoughts, I push that away because I mean, yeah, tomorrow's not promised. So let's not even go there. Let's stick our head in the sand.

Yeah. So our next one is @HeidiWalton. She said, anxious kids can be so mean. My daughter has never been able to form close friendships. I want that so much for her. There's fear because she can't protect her. I also worry about how the teachers are with the kids, how understanding and patient the teacher is, can totally set a different tone for an anxious child. And hopefully maybe this year will be the year that she makes a true friend. 

And making friends is not the same for our kids. It's still, like I'm so close with a few of my childhood friends. And knowing that, that experience most likely will never happen for my daughter is really a hard pill to swallow. For sure. Unfortunately, I just, I don't think, I mean, I could be wrong. I hope I'm wrong. I just don't see it ever really happening for her to have a really close friend. Yeah. Lifelong friend in her situation. But. I hope I'm wrong, but yeah, this thought crosses my mind a lot. And it's just one of those things that unfortunately there's no changing it. We can hope and wish and pray for it and maybe it'll happen, but it's hard. It's hard as us as parents to. To see that may never happen. 

Deonna: And I know, and you don't think, I mean, I never thought about it really until Allie got disabled and then I got really scared that was going to be, our future. And so Heidi's one of our nurses that works for us and her daughter's a disabled high school kid. And I feel it because I know her daughter and she's so much fun and everything, but all we want is just for our friends to have a connection with somebody because their families love them, their church, even, but even at church, it's the same situation.

I just want Allie to have one friend at church. And she has this one girl who she's gotten real close to and comes over and they like a lot of the same stuff, but. Yeah, it's even at church, kids can be mean or not inclusive or ignore them or, I mean, it's not like even there, there's like a million options, but yeah it's so hard. This is part of why we're so afraid of our kids going into middle school, high school, because kids are mean. They're so mean. I do think this generation's a little better than ours was as far as like acceptance and stuff, cause our generation was the worst. Like I felt a lot of levels, but.

And I remember disabled kids getting made fun of, like growing up and did I do anything about it? No. And so that hurts me to think back on and be like, what a loser I was. I didn't like, stick up for them or whatever all the time. But yeah, no. And I mean, thinking about also when they get into high school, like if the teachers aren't that great, that is a new. Thing to think about too, like in the elementary, they're like, Oh, Allie, like all friendly, but I'm sure the older school teachers aren't as cuddly and warm and fuzzy. Yeah. So that's interesting to think about too. 

So, our next one is going to be , someone who's using homebound or home services. I don't really like the word bound, I don't know, I just don't like that word but that is what they call it. But so @jricelujan said that when she's talking about back to school, she said, we buy our daughter, the clothes, the shoes. We make a plan for the year with this amazing teacher. And they've been blessed with in home services since pre K for her. She's 16 now. So she's been doing this for a while. And she's going into 11th grade. And she said this year was sad, just realizing they weren't going to go pick out that car. She was not like gonna drive, get her driver's license, but they're thankful for their time with her. 

And I had never heard of home bound or home services until we were going to sign her up for it and I didn't even know it existed. But for those of you who don't know what that is basically, and it's probably different in every district, but what my experience was your kid is either not well enough to go to school, but you need some support. Like you're not wanting to do the full. homeschool route where it's all on you. And then the teacher is assigned to maybe six or seven different kids or maybe even more depending and they go into your house and they show up like every. day for one hour and they teach her kid everything they're supposed to be learning, which is vastly different depending on the kid and everything.

But that's how Allie did kindergarten because she had just been so recently, COVID was still like going crazy. And that was back before I was of Feeling okay about her being around anyone? Like I was so scared, but Oh yeah. You have the same teacher, like she was saying, potentially your whole career if the teacher stays in that role. And like it doesn't change every year, like in a typical classroom setting or anything. And I love that it exists. Because even if , your child got cancer and was in the hospital a lot, they can do homebound services through that.

But I love that she still does the clothes, the supplies, the shoes. I mean, have fun with it. Make it a big deal. Yeah. Yeah. I mean, I'm glad she does that. And when I read about these fears, it definitely took me back to 2021 and all that. And Allie did it. It was good, and she probably could have gone to school, but she would have probably missed half the year. It would have been stupid. And so, yeah, I mean, we loved our miss Vicky and she's retired now, but , it was a good thing and I'm glad it exists because I was too screwed up mentally to. Do homeschool with her, right? I used to be a kindergarten teacher. Like I could have done it, Yeah, but I was so freaking out. I was so anxious Yeah, like everything there's no way I could have done it so These people step in and help us when we can't do it ourselves 

Rhandyl: Yeah, it's great. We have always had intermittent homebound services for Remi and like you guys during the pandemic, we did homebound and when she's sick, we've done homebound services. Yeah. So, we've had homebound teachers at both districts that she's attended and it's wonderful that option is available. And so anytime of course there's certain qualifications, like for example, this week both of her nurses that are qualified through the school and background checked and everything. They, neither one of them could work and she had one of her PRN nurses work. So she wasn't able to go to school, but unfortunately that doesn't qualify her for homebound services. No. She has to be sick or something like that. Like it has to be a longer length of time than like a day or something, right?

Yeah. Well, I've had them come for like a day, just whenever she's not. Doing well, like she had a bad night and yeah they'll come for just the day just so that she doesn't have that absence and they're really good about for, especially whenever we had a long term homebound service teacher, they would go to, her specific teacher at school, get the curriculum, bring it to the house, even down to the art work they were working on. And of course they're only there for an hour. So a lot of it's essentially homework. Like she goes through the big stuff and then, she would leave things for us to do with her. And it was just, it's a great option. Like you said, for those kids that need that. And the. for the caregivers that are just not, I love that it's intermittent for us, that we have the option.

Deonna: Do you say you want that in the IEP? Yes. Okay. And you have to get a note from the PCP saying that she needs intermittent homebound. Okay. Yeah. I may do that, because you never know what's going to happen. 

Rhandyl: You should get the note before your ARD. Yeah, because you could get sick. And be home for three weeks, you just don't know. So that's why we always have it. We're in the hospital. Yeah. Cause I know Allie's went into the hospital to meet with kids as well. So. Yeah. So yeah, it's not ideal for my daughter, but at least it's an option. If we didn't have nursing, it'd probably be our only option, honestly.

Yeah. So our next follower, @DiAne, she says, my son with special needs is homebound, but my other kids go to school as long as they don't bring home anything, we're good. Cool. Yeah. It makes it her uneasy. She can't. Yeah. Hose him off outside. I know, right? Lysol. Yeah. It makes her uneasy cause she just, and she can't focus on work when he's sick. A simple cold is such a struggle for him and 

I get this, I still tell my daughter's nurses at least once a week to make sure they're drenching her in hand sanitizer all the time. But it's just inevitable. It's inevitable. She ends up sick a few times a year because kids are just little Petri dishes and that that was our biggest fear originally sending her school is her getting sick and, but she's, of course she has been hospitalized a few times just from, what we would consider the common cold and it happens, but rhino. Yes. Yeah. That one's. Never good. No. But but yeah, I totally get the fear of this and especially when you have multiple kids in school, I mean, you're just exposed to so much, so, yeah. 

Deonna: This comment took me back because there were so many times I would have to text Miss Vicki and be like, she's too sick to even see you today. , we can't even wake her up. She's so tired and so sick. So it cracks me up. And now I think about how we send her into public school. I'm like. There's just so many germs, , and we try, like I've told Allie's nurses, don't discourage the kids from being close to her, because that's how she's gonna make relationships.

I want kids hugging her, I want kids touching her, but, I I'm like, don't let them touch your mouth, but everything else, I'm like, okay, whatever. But I, I'm shocked she's not like sick in the hospital 24 seven with how gross schools are like, Oh my gosh. But yeah, she somehow building up those immunities, I guess.

 I got COVID recently. I got so sick. I actually had to go lay in bed. She was fine. She had it. She didn't even, but she also has ICU level, like airway clearance twice a day. So, that's probably why. 

Deonna: So our next group and our final group we're going to talk about is homeschooling and we had a few people comment about this. I do think probably a lot of people do this. The, not as many as I know that do the other things, but I do think it's a pretty common thing. 

Yeah. But our first comment is from @FarmersWife2008. And she said she's begun the planning process and she makes a big deal out of the first day of back to school too. So that's fun. I want to know what they do. I've seen these cute, back to school breakfast things. And there's all kinds of cute things people do for homeschooling, but she's, she said they've been homeschooling since the very beginning for both of their kids. And I don't know if both kids are disabled or not, but yeah.

I do love that these parents who are keeping their kids at home do make it special and celebrate it. Yeah. They probably have the time to celebrate it and make it special. All the rest of us are like, get out the door. Oh my God. I know. So, they have a little more time to do something like that than we do.

Rhandyl: I have zero experience with homeschooling. Me too. But I totally respect the parents and caregivers out there that do it. I know. Yeah. I know. But I know it's something that I couldn't do unless I was put in a situation that it was my child's only option. I don't feel like I'm cut out for that at all. I don't think I have the patience, definitely don't have the creativity. I, yeah, props to these homeschool caregivers, man. I totally, yeah 

Deonna: and they're not getting any, unless they have some sort of respite situation, you're, that's my fear if I ever did something like this, which I could, if I had to, but I'm afraid I would just get burned out really easily. I would have to. Take time. And these moms probably have built in ways for them to take some time to, get a break or whatever they need. But, and if they don't need a break, they're superwoman because woohoo, I need a break sometimes. 

Rhandyl: For sure. So, the next homeschool mom, @annabethburnham, she said, That we had intended for her to finish elementary school in our neighborhood, but the school district ended up saying that they couldn't meet her needs. So, they're doing homeschool for the first time this year. And she's super angry about the injustice and also eager for the time and fun that they'll get to have together. She does feel like it'll be good for them, but at each stage, God has provided help as we've needed it. So I'm very curious how this will all work out.

And I, this, honestly, this comment makes me so furious. I'm not sure what state, I'm not sure that the state she's in or the school district, but honestly, this should be illegal. And it probably is. I just. Like I mentioned earlier, if I was forced to homeschool, , I would figure it out, but I just pray this never happens to us. I, man I can't imagine the stress , and pressure that this put on this mom oh my gosh. 

Deonna: I do think it's hard because schools do the wrong thing a lot and it's super hard. Me and you and everyone we know has had a moment where a school did something and we're like that's not what we want or I don't like this or I don't feel like this is right. I don't know what happened in this situation. I want to know because I'm nosy yet again, I always want to know everyone's business so y'all can just let me know. But, yeah, it does sound like something happened, but , as a public school, I'm pretty sure you're required to do whatever it takes, , we both have had things happen where the school did something and we're like, oh gosh, but , it is very difficult because if you don't have a really like combative personality, then yeah, , what do you do? Like it's very difficult, but you can have state advocates. Oh yeah. Come to your aid if you aren't really the same. Cause I used to be a totally different personality than I am now but it's not everybody's personality. It's just not. So, I can tell she has mixed feelings about it that, it just, that's really hard.

It's tough. I do think most schools have, They try, but some don't, they're not all created equally, so that's a tough one to read. Cause I'm like, what's going on? I know. Yeah. Where is this? Can I make a phone call? Yeah, I know. Yeah. You're like, give us numbers. We'll call for you. , and it, injustice just happens in the disability world every single day. So it's the real world, unfortunately. Disability. It's a tough community to be a part of because of just the world treats you bad sometimes and it's so hard 

So our last comment we had and like I said, we're just so thankful that you guys sent us these comments And we hope you guys can relate to a few of them. But our last one is from @SarahBytnar, she homeschools, and she says there's multiple reasons for it. There, there always is. But she said one is they live in Chicago, and she actually doesn't trust the Chicago public school system to keep her safe. And I don't know if that's like in a violence, like from even like stuff like that.

Like I'm not really sure what that means. But just even I don't know what I'm trying to say. Like medically safe or, I don't know the context there, but she says her child has issues with short term memory and she just doesn't trust that they would be able to tell me if something happened and I, you can speak to this more than me, but.

Trusting a school district can be very hard because nobody is going to take care of them the way we do. Even their nurses who we love and trust, it's just, they're not going to do exactly what we would do. So you have to, you do have to trust people outside of your home. But yeah. The thing is two things, like We both have nurses going into the schools and I'm pretty sure if they were not being treated well, I know both of our nurses, there might be a situation where I go down there and get a nurse out of jail or something.

Like our nurses are very in love with our kids and if they weren't treated well, like last year. Both of my nurses had confrontations with people out in the parking lot because they were parked in handicapped spots that they didn't belong in, or they were blocking our kid from being able to get out of her van, and Oh my gosh, school pick up is the worst. Yeah, and drop off. So, all of it is so inconsiderate. But I legit had to tell both of them like, Hey, don't get in a fight in the parking lot. You're gonna have to come get you out of jail. But but they have advocates that go with them, but for, I would say probably 70 to 80 percent of disabled kids, they're going in alone. I mean, there's no, they have an aid, but that aid is being paid by the school district. So, oh my gosh, like I just think about how scary that is for parents because if , this kid has short term memory loss or something, let's say this child's mistreated at school and then can't really tell her mom, Hey, this, and if you have a nonverbal kid, 

like my daughter will sing like a canary, like she will tell. If you don't treat her right, she's going to tell me, and if you don't think she is, you're crazy. She's going to tell, because that, she has had to tell me in the past when she's been, like, verbally abused by a nurse. She will tell. And so, , she can advocate for herself and her care in a way that Remi can't. And so, you think about that too, and I'm like, oh my gosh yeah. 

Rhandyl: Yeah, I love that I have the insight the in class, in school insight on all the things. But I can't imagine these parents that have to send their kids to these public schools without a caregiver right there, man, it would be hard not knowing what's being said or how they feel or, I just, yeah. But as far as this comment goes they live in Chicago. I just feel lucky that we live in a city that has school districts. They're very accepting and accommodating and able to provide my child with a safe school environment. I mean, but it's still hard to trust the process though, but. 

Deonna: It is very hard trust is like the worst, but I think it's been fun hearing about all these different comments, obviously, as a parent of a disabled kid, we're like happy one second, and then crying in the parking lot the next, we're all very unstable, but I, it is such a difficult thing, sending a typical kid into the school system. So when it's a kid that's just gonna be different, that makes it double hard. And I know this might be hard for people outside of our community to hear, like, how we actually feel. We don't share all this when we're sharing the cute little back to school photos, because most people can't handle What we actually are thinking or yeah, like what our kids are thinking that I mean

Rhandyl: daughter lived through this day at school.  Cause yeah, almost hasn't at least once. So yeah, 

Deonna: she's been doing some dramatic things lately. We hope you guys learned a lot from this episode about what we go through as parents, what our kids go through, and then maybe some ways you can encourage your kids or your grandkids to make , our kids lives better at school. And so, thank you guys again for all the comments. It helps a lot. So keep them coming and we'll see you guys next time.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.