The back to school grind is tough for everyone, but it’s over in a flash and parents get a breather during school hours.

Except when they don’t. 

The parents and caregivers of students with disabilities live in back to school mode all year long.

It’s almost like Santa preparing for Christmas. The first day of school is the main event, but elves are busy all year long. Come to think of it, Santa might have it easier. 

This episode is here to make things easier for families. The Center for Family Involvement’s Blind and Vision Impaired Specialist Dawn Pfeifer-Snow supports countless people with questions about school. She’s also a mother with lived experience navigating school. 

Meg Druga taught in an inclusive preschool classroom for 11 years. She is an Early Child Coordinator with the Training and Technical Assistance Center (TTAC) at James Madison University. She’s also a Determinator with I’m Determined. To learn more about that program and its origins, check out our episode, “Why We Need More than Inclusion.” 

Between the host and guests, there are tips, insights, and validations that everyone can use, from the Pre-K set all the way to high school and beyond.

 

Take a listen and please, share your experiences with us!

 

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

 

TRANSCRIPT

 

01:00:07:17 - 01:00:32:11

Speaker 1

Welcome to The Odyssey. Parenting Caregiving, Disability. I'm Erin Croyle, the creator and host of The Odyssey podcast explores the turn our lives take when a loved one has a disability. I've been on this less traveled road since 2010, when my first child was born with Down's Syndrome. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.

 

01:00:32:13 - 01:00:58:09

Speaker 1

This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we don't shy away from the tough stuff either. Among the hardest of the hard for many families is school. The back to school vibe is completely different when students have ideas and five offers. I see this with my own three children.

 

01:00:58:11 - 01:01:19:15

Speaker 1

For my younger nondisabled kiddos, it's a breeze. We just get the stuff they need from their school supply list. Let them know their teacher and room number and poof, off they go. For my oldest, who's now a teenager. The fall back to school prep starts in January. His monthly IEP meetings shift their focus to the next academic year.

 

01:01:19:17 - 01:01:40:19

Speaker 1

School supply shopping consists of my staring at a long list, wondering what he'll actually need and use in the weeks and days leading up to the first day. I'm in touch with his school team so we can make the transition as seamless as possible. He needs help getting to all the new classrooms, not just on the first day, but until he gets the new routine down.

 

01:01:40:21 - 01:02:03:04

Speaker 1

And it doesn't stop after the first day. There is constant communication as my son and his new team figure each other out. And of course, in middle school and high school, these transitions come each quarter with new classes and teachers. Unfortunately, the challenges I face with my son are just a drop in the bucket compared to what many caregivers juggle during the school year.

 

01:02:03:06 - 01:02:27:08

Speaker 1

That's why I've asked Dawn Pfiefer-Snow and Meg Druga to join me today. Dawn is the Center for Family Involvement, Blind and Vision Impaired Specialist and the Family Engagement specialist with the Virginia Deaf-Blind Project. She's supported countless families with back to school questions and other issues. She's also a mother with lived experience, navigating schools and so much more.

 

01:02:27:10 - 01:02:53:06

Speaker 1

Meg taught in an inclusive preschool classroom for 11 years. She's now an early childhood coordinator with TTAC the Training and Technical Assistance Center at James Madison University. She's also a determined eater with I'm determined. And if you want to know more about that program and its origins, check out our episode Why We Need More than Inclusion. Now, both of you, you're here.

 

01:02:53:07 - 01:03:08:05

Speaker 1

I'm so excited. I think this is a very important conversation for parents and caregivers to hear because it is such a tough time. I would love to hear from you both to just give a little context of who you are and why they should listen to you. Meg, can we start with you?

 

01:03:08:07 - 01:03:37:09

Speaker 2

Sure. Thank you, Erin, for having me today. I am very excited to be here, as Erin mentioned. My name's Meg Druga. I'm an early childhood coordinator at the Training and Technical Assistance Center. I've been in my role for almost three years. I'm getting ready to come in to my three year anniversary. Prior to that, I was an inclusive preschool teacher in the school division in which we had 100% inclusion in our preschool program.

 

01:03:37:11 - 01:04:07:17

Speaker 2

I am duly endorsed in early childhood and early childhood special education, and I came into my career a little late. I actually started down this path in my path. I was going to school in agriculture and applied economics about halfway through my college experience. I realized that's not what I wanted to do. So I literally came back home, showed up on my parents doorstep, and started trying to figure out what I wanted to do with life.

 

01:04:07:17 - 01:04:33:03

Speaker 2

And through that journey, I happened to bump into an amazing early childhood special education teacher who told me that she needed a new educator in her classroom and so brought me into it. And after the first day of school and her newly inclusive preschool classroom, because it was a new program that Virginia was running, I fell in love and decided that that's what I wanted to do.

 

01:04:33:04 - 01:05:03:07

Speaker 2

So for three years, I worked as a peer educator and went back to finish my degree in early childhood special education. So I fell in love with early childhood special education and realized that that's where I want to be. I'm also a mom of a very spunky eight year old, and people often hear me talk about Lizzie. We live in a beautiful rural community with my husband and our dog, Bo.

 

01:05:03:09 - 01:05:25:13

Speaker 1

I love it, Meg, and I love a good origin story because, Dawn, I don't know about you, but I was a journalist before this and I didn't know much about disability or any of it. And then I have my son and that's why I'm here. I'm always curious when someone's not really affected by disability, what brings them into the field, what brings them into the profession, whether it be special education or policy?

 

01:05:25:15 - 01:05:35:23

Speaker 1

So hearing that and hearing that you fell in love in a classroom, just kind of it makes my heart sing because those are the people who we want teaching our kids anyway, don't we?

 

01:05:36:00 - 01:05:52:23

Speaker 2

Yeah. Yeah, it was I always say it was a life changing moment for me. That class I still carry with me and they have graduated now. But in my mind they're still these three four year olds that forever shaped my career path in my life. And I'm always very grateful.

 

01:05:53:00 - 01:05:55:13

Speaker 1

Dawn, can you tell us a little more about yourself?

 

01:05:55:19 - 01:06:18:12

Speaker 3

Yeah. Like you, Erin, I love to hear the why and the how of people getting into, you know, the disability world, for lack of a better, better word, much like you, because I've heard you share your story as well. Erin, I had really never been around anyone with disabilities before. I remember one young man in high school, and that's it, right until I had my daughter.

 

01:06:18:17 - 01:06:38:13

Speaker 3

And that's really when people ask me, you know, what do I do? That's usually my first thing. I'm a mom first, right? I'm a mom. And then I also provide support to families who are have loved ones who are blind, visually impaired or deaf blind. But yeah, my daughter brought me into this work and, you know, I'm forever grateful She likewise changed my life for the better.

 

01:06:38:15 - 01:07:06:07

Speaker 3

So, yeah, So I'm a mom first. I always identify as having three children with visual impairments. So my oldest biological daughter is 21, freshman in college. She's blind. She's identifies on the autism spectrum, has hydrocephalus and a seizure disorder. My youngest biological child is getting ready to go off to her freshman year of college, and she is blind in one eye and also has ADHD.

 

01:07:06:12 - 01:07:32:01

Speaker 3

Totally different eye conditions. And then I was blessed to have a bonus daughter stepdaughter, I call her bonus daughter, who is forever 18 and seven, and she had a genetic degenerative neurological condition that caused her to lose her vision first. And then it affected all of her other abilities over time. But when she was young, she had already lost all of her vision, which also led me to my wonderful husband.

 

01:07:32:03 - 01:08:11:04

Speaker 3

So I've been doing this work now for probably 19, 20 years, is when I first started really reaching out and trying to connect with families and found myself providing support to other families because I was doing was attending and taking so many trainings and workshops to educate myself and as I was establishing a network of support for myself, I was very quickly finding that even parents of older children had not taken a lot of these trainings and had not were not aware of their rights, were not aware of all the various options that they had.

 

01:08:11:06 - 01:08:28:24

Speaker 3

And so I found myself naturally helping other parents really early on. So I would say 19, 20 years of doing this work informally and going on 12 years with the Partnership for People with Disabilities, doing this work in a more formal way of helping families navigate the services and systems.

 

01:08:29:01 - 01:08:52:16

Speaker 1

Yeah, it's interesting. So many people I meet like you and I don, I think we know how hard it's been for ourselves and we just want to make that easier for others and just so we can enjoy our kids. And I think that's why I really wanted to do this special. You know, I think so many people equate back to school for parents, especially mothers, frankly, is like, oh, your kids are back in school.

 

01:08:52:16 - 01:09:10:24

Speaker 1

You can take a break and take a load off. But when you have a kid with a disability, it's a whole couple notches up. And so I really would like to start with what do you recommend to ease that transition back into school? Dawn, I want to start with you because you have older children, but also you've been through the whole spectrum of it.

 

01:09:11:01 - 01:09:13:06

Speaker 1

So what what tips do you have there?

 

01:09:13:08 - 01:09:42:09

Speaker 3

So easing back into school, if I was to look at it from just the summertime and preparing for that first day of school, my answer is going to look very different versus preparing for that upcoming year, because I start that in the winter of the previous year. But looking at it from the perspective of from the summertime, what we have always done and what I found was very helpful was, you know, orienting to the space.

 

01:09:42:09 - 01:10:13:09

Speaker 3

Now, granted, I'm thinking of this from the perspective of having a blind child, but really, I think that applies to all, all children, you know, having a chance to go in, not necessarily on back to school night because that's busy is crazy and you have very limited time. But, you know, carving out that time when the school is more empty, quiet, just the teachers are in there working on their classrooms and having a chance to orient to where your classes are going to be, even in elementary school, if that's just one class, it might be a different class.

 

01:10:13:14 - 01:10:32:05

Speaker 3

And another thing that was always very helpful was arranging a team meeting with all of the teachers that were going to be involved for the year. That way you gave everybody an opportunity to meet each other, talk about supports that might be needed, help my child feel comfortable and ask questions that needed to be asked.

 

01:10:32:07 - 01:10:56:10

Speaker 1

I completely agree. For context, my son is going to be 13 and going into seventh grade. And yeah, those team meetings. Not only do I ask for one ahead of school, but in my son's IEP. I have so many meetings per year and I typically try to frontload those meetings because that transition time is difficult. So like maybe two meetings in the first month and another meeting in October.

 

01:10:56:10 - 01:11:22:13

Speaker 1

And just because any kid transitioning is difficult, you add a disability into the mix and those transitions are so much harder. You add intellectual disability into the mix and just finding a classroom can be hard. And so I totally agree. If you can work with that school team in a range of time to get your child in before the chaos, is there, it is so useful.

 

01:11:22:15 - 01:11:42:23

Speaker 1

Another thing I've tried to do too, sometimes that first day is so busy. The overwhelm component is there either request that he comes before the crowd or after the crowd. And with middle school, because you have this 20 minute window before school starts, they allow me to go ahead and take him to his homeroom so he can like avoid that chaos and yelling.

 

01:11:42:23 - 01:12:16:15

Speaker 1

I mean, middle school is loud and chaotic. And then one other thing before I go to IMAG, something that I've always done, I do sort of a resume for my son. So his team, since he has limited expressive language, I want his team to be able to know who he is. So certain things that might set him off, certain things that might help him if he's having a tough time, you know, his favorite songs that can help in transitions, helping him get water, reminders for the bathroom, who his siblings are, because the teachers, if they don't know you, they're not going to know who your child relates to.

 

01:12:16:15 - 01:12:38:08

Speaker 1

And if he's not able to say it, our children can miss out on a lot of those first day conversations. If the team isn't aware of the bigger picture of who this child is. So I think especially if your child has communication difficulties, really helping to prevent any sort of missed items so they can be involved is really important.

 

01:12:38:10 - 01:12:40:03

Speaker 1

Meg, how about you?

 

01:12:40:05 - 01:13:04:15

Speaker 2

I feel like everything that both of you guys were saying, I'm just nodding in agreement. First of all, my perspective is a little different because I have preschoolers. And so I recognized that parents, whether your student had a disability or not, because we were an inclusive classroom for many parents, they were handing their child off to me for the first time of handing them over to somebody else.

 

01:13:04:17 - 01:13:36:21

Speaker 2

And that's scary in general when you have a student with a disability. I think that that anxiety that the parents feel and that it's just it's so it's ten times more and so we worked really hard on setting to bring down that anxiety a little bit. I always open my classroom before the school year. I think it's important to request that they come in and see the classroom, see the space, get acclimated to the space.

 

01:13:37:01 - 01:14:00:21

Speaker 2

For example, I had a student one year who had various mobility needs, and so the way I thought I had arranged my classroom and the centers, I thought it would work well. And then the student came in and I realized, oh my goodness, they can't access the block center easily or the easel that I placed here is really preventing them from getting to their cubbies.

 

01:14:00:21 - 01:14:29:18

Speaker 2

And so we needed to make some arrangements. So it helped me figure out ways that we can even just adjust being so that so that the burden or not the burden, the fear of that access of not having access is gone so that we make our environment completely accessible. It gave the parents and I am I always invited the school team that be working with the with the students as well, including my peer educator.

 

01:14:29:20 - 01:14:49:20

Speaker 2

It gave us time to chat, to get to know each other and to start building that relationship. As an educator, I think one of most important things is to build relationships not with just our students, but with our families as well. And so it gave them a chance to get to know me a little bit better and gave me a chance to get to know them.

 

01:14:50:00 - 01:15:10:07

Speaker 2

I think, Erin, you were talking about giving the resumé. I used to have them fill out this form of what's the favorite food where you know, what shows to be like with their toys, like who lives in the house. Siblings names are one pager on the undetermined website can also be a great tool for that and you can fill it out as a family.

 

01:15:10:07 - 01:15:35:18

Speaker 2

So you can talk about here's the family strengths, here's our family's preferences, here's our family's interest. Then here are our needs. Like this is our need of how we need communication right now going into this, how we need to know that services are being met. I know that as a parent myself, like when I drop my child off to daycare for the first time, I needed a picture of my child smiling within the first hour.

 

01:15:35:18 - 01:15:54:03

Speaker 2

If I could get it. And so even just stating that, like I need at least one picture during the day so I can see my child is safe and is doing okay, and so you can fill that out on your student, but fill it out as a family as well, I think is really important.

 

01:15:54:08 - 01:16:17:04

Speaker 1

That is a really great idea. I think, especially with the younger kids, because you do need that context. And I also want to say you mentioned the word burden, Meg, and that is something that I talk about a bit because I think people outside that don't live our lives see our children as a burden. But I think in the context you used it in the context that we feel it our children are never a burden.

 

01:16:17:04 - 01:16:28:03

Speaker 1

It's the it's the lack of universal design, It's the lack of access, it's the lack of ramps, it's the lack of understanding society's the burden, not our children.

 

01:16:28:05 - 01:16:50:01

Speaker 2

Yes. Yes, it is. It's and it's more of the burden of how you guys are feeling of all this is one more thing that I have to worry about, that my child's not going to have the access that every other child in that classroom has. And so to take that burden of worry off of the parents, I think is important.

 

01:16:50:01 - 01:17:12:22

Speaker 2

I was recently in a training in which our presenter made and I wrote it down because I have been carrying it with me now, made a wonderful point of our children can be ready for anything that we put them in. It's the environment that we have to make sure that is ready for for our children, and that falls on us as the educator.

 

01:17:12:24 - 01:17:34:21

Speaker 2

And I love that. So that's making sure again that we are able to access the blocks and the cubbies that we have, everything that we need for all of our students to be able to participate and the support that they need and that we're making our families feel welcome and comfortable in the environment as well.

 

01:17:34:23 - 01:17:58:00

Speaker 1

Absolutely. I have one more question that has to do with early childhood that I was just having this conversation with my family last night because we were talking about I'm determined, we were talking about self-determination and I was talking about regrets. And one of my biggest regrets with my son is his amazing preschool teacher. She was amazing in the most understated way.

 

01:17:58:01 - 01:18:22:18

Speaker 1

And she confidently told me, because if you have a disability, you can start in Virginia preschool at the age of two. And so he did. And he wasn't quite potty trained yet. And it was a huge source of anxiety for me. And she confidently said, I got this, just send him in his underwear. But I was so worried about him having an accident on the bus that was like, no, he needs to, you know, No, I want to.

 

01:18:22:20 - 01:18:43:12

Speaker 1

And it's a huge mistake because an accident on the bus in preschool is much less of an issue than an accident on the bus in grade school or fourth grade developmental delays just mean that that stuff comes later. What do you wish you could tell parents to ease their minds and have a little trust in that school team?

 

01:18:43:14 - 01:19:16:17

Speaker 2

I always ask them to let me know their concerns. If your child having a bathroom accident is really causing angst and anxiety, be honest with the school team because then I can say we got this because not to get into a potty training discussion, but early childhood teachers. Bye bye trade. Potty training is what we do. And one of the most meaningful IEP meetings I think I sat in is when you get to the the part and you say, okay, where are the parental concerns?

 

01:19:16:19 - 01:19:42:05

Speaker 2

And the parents pulled out a list multiple pages long. It was so important for them to list all their concerns, whether it related to the IEP or just a concern for their child in general. And I think especially as an early childhood educator, we we have that time to sit there and listen to them and say, all right, what can I take off of you?

 

01:19:42:05 - 01:20:02:01

Speaker 2

Because that's really that's a lot to say. Okay. Let let let us absorb a little bit of that because we got this. So I just would say be open and honest. And I know that's easier said than done. Has that. That can also be really anxiety provoking if you feel like you can't be open and honest again with your words.

 

01:20:02:01 - 01:20:13:22

Speaker 2

Then again, kind of all, I keep going back to the one pager, but that's where maybe those needs may be a really good place to write down some of the concerns that you may have.

 

01:20:13:24 - 01:20:37:21

Speaker 1

I totally agree. And I think both one pagers and IEPs are where you need to have things and the important thing is there's a difference. The IEP is legally binding. The one pager is not. So anything that you want to ensure absolute happens at school has to be any IEP. The one pager is a really good resource to just get to know a student.

 

01:20:37:21 - 01:21:08:21

Speaker 1

One thing that I do for my son is, you know, you talk about writers and rock stars or movie stars, how they have the requests of ridiculous only Green Eminem's or only green and blue because they want to make sure that whoever is handling it read it. So I actually put a couple nuggets as like my son's writer to see if someone reads it, because there's a couple of really cool things that would be absolutely brought up in conversation if it were read and there's been quite a few times it hasn't.

 

01:21:09:00 - 01:21:19:11

Speaker 1

And so I find that that's important, I think as well. And I want to move to talking about the IEP. How do you prepare the team? How do you prepare the IEP for that new school year.

 

01:21:19:13 - 01:21:43:12

Speaker 3

As I mentioned earlier, is that I start preparing the winter ahead of the school year. So if my daughter's starting into first grade next year, I start preparing the winter of her kindergarten year. For me, what I always found to be very helpful is and this is kind of both, it's it's helping prepare for the IEP team, but it's also preparing the special education teachers that are involved in her plan.

 

01:21:43:12 - 01:22:04:10

Speaker 3

And then ultimately, it'll help the teachers, you know, as we get closer to the upcoming school year. But what I would do is I would go on to the Department of Ed's website and look up the curriculum and the standards of learning for the upcoming year. Some people might think that I'm a little over the top with that, but it was so helpful.

 

01:22:04:12 - 01:22:25:23

Speaker 3

I would print it out for each subject and then I would go through it and make notes. I would think about, okay, how is my child going to access this? How is she going to learn X, Y, Z in the course? You can't address every single thing, right? So ultimately, I would try to narrow it down to the heavy hitters of what I thought was important and it would make the biggest impact.

 

01:22:26:04 - 01:22:52:22

Speaker 3

A lot of times it covered many things. Then I would start researching what would a goal look like, right? And I would make notes on ideas for goals and I may not write it out word for word, but I would have a bullet list of what some of the goals might look like. I would research what kind of devices or technology low tech 3D items might be helpful in supporting her, learning the various things.

 

01:22:53:00 - 01:23:18:01

Speaker 3

And again, I would make a list. And that list, when we had our IEP meeting, it started out with when we had our IEP meeting, I would take that list with me. I would ask our teacher for the visually impaired because usually that with a student who is blind or visually impaired or a deaf blind, the teacher for the visually impaired is often in charge of ordering a lot of the materials, educational materials for the student.

 

01:23:18:01 - 01:23:40:20

Speaker 3

So I would hand a list of items to her to order and we would discuss all of it during the IEP meeting. But it got to the point with our team where we just became so comfortable with the routine that the teacher for the visually impaired and I would have a pre-meeting. There were a couple pre meetings where we would discuss all of that and even craft out some ideas for goals.

 

01:23:40:20 - 01:24:07:21

Speaker 3

And then that way when we met as a full team, it just went a lot smoother and was a lot, a lot shorter. But that was really, really, really made a huge impact in many ways. One helping to prepare for the IEP too. I knew what my daughter was going to be expected to learn. Three The team knew I was an involved parent, right?

 

01:24:07:23 - 01:24:12:15

Speaker 3

So that's the way I handled it.

 

01:24:12:17 - 01:24:45:03

Speaker 1

Dawn, this is such a great strategy. I'm always taken aback by how, even though I've done all these trainings and I've been doing this for a long time and conferences and books, I learn something new and sometimes it's from someone I've known for years and we've just never talked about this. I wonder, though, what about those students who aren't at grade level who aren't going for the standard diploma, who are in middle school but doing kindergarten level work because they're just not there yet?

 

01:24:45:09 - 01:24:50:03

Speaker 1

How can they utilize the things that you're talking about?

 

01:24:50:05 - 01:25:07:20

Speaker 3

I would still say looking at the standards of learning overview, right? So I just want to be clear that we're not talking about looking at like a nasal test. You know, you're looking at the standards of learning overview, you're looking at the breakdown of the curriculum because I can't remember the details, but I could pull different things from each document.

 

01:25:07:24 - 01:25:28:09

Speaker 3

But taking a look at that and then and then thinking about what makes sense for my child. And so maybe it's not everything that's on there. Maybe it's only one thing from each section. How would that be modified for your child so that it made sense and was meaningful? That's the way that I think you could approach it that way.

 

01:25:28:09 - 01:25:41:20

Speaker 3

You're still looking at what is everyone else in the classroom or what does everyone else at that grade level being exposed to and you finding a way to make that meaningful and inclusive?

 

01:25:41:22 - 01:26:01:17

Speaker 1

Meaningful is the key word there, Dawn. I think a lot of times and I've written about this and I've talked about it, we do inclusion for the sake of inclusion without providing the supports and materials needed for it to truly be inclusive. And I think meaningful is key. Meg, what do you see in your work where you see meaningful inclusion.

 

01:26:01:19 - 01:26:39:19

Speaker 2

Meaningful inclusion? I mean, it is more just than to have a spot in the classroom. It's that and meaningful intentional modifications and supports and opportunities for interactions. When Dawn was talking, I was thinking about a student that we had one year that when it was time for her to start transitioning out preschool into kindergarten, there was a large discussion around Lori and moving either from my fully inclusive preschool classroom at her home school to a different classroom, a more self-contained classroom in a different school, the parent said, Absolutely not.

 

01:26:39:20 - 01:27:05:12

Speaker 2

We want her to continue to be in her home school. I said, Absolutely not. She needs to continue to be in her home school. And there were questions of, well, then how are we going to write an IEP to address the needs with the swells? So then what I did is I got with her new case manager for kindergarten, and we looked at the soils and we looked at the one that sticking out my mind is the literacy of the well.

 

01:27:05:12 - 01:27:34:20

Speaker 2

And we were talking about learning about characters and plots and settings and we're like, okay, we can do this. It's just we're going to modify it and we're going to adapt it. We are not changing the content that she is learning. We are modifying how it's being delivered. We are modifying how she's going to demonstrate that she has learned it, but she is still learning the same information and that her peers are learning.

 

01:27:34:20 - 01:27:58:01

Speaker 2

And I think that we talk about IEPs and we talk about inclusion. We are providing the same opportunities. It's just the way that it's being presented. We all learn differently. I mean, I take that information much different than my husband. My husband is a walking calculator in his head. I'm the one that still pulls out my phone when we have to tip somebody and typed in the calculator.

 

01:27:58:01 - 01:28:19:20

Speaker 2

And so I think we often forget that we all have very different learning modes in the ways we learn. And so I think for parents to ask and maybe to look at the Sols and do what I love, Hamilton said that she went through them and looked at them. I had a guardian one year, two years in preschool.

 

01:28:19:20 - 01:28:43:03

Speaker 2

I get I love most of the time I had the children two or three years, but she had a binder and when I had her grandson, the binder was really, really small. I just went to his fifth grade graduation and in May, and she said, The binder is now this big. But she kept everything. She kept notes, she kept her own notes and documented what was said in the IEP meetings past IEP.

 

01:28:43:03 - 01:29:06:04

Speaker 2

She came with questions. She did her research. When Dawn was talking earlier, a tip I thought was every single meeting. We said, okay, well here, would you like a copy of your rights? She said, Absolutely. I know parents are, and family members may get tired of having that. I don't know if it's a purple booklet or not, but a copy of the rights.

 

01:29:06:06 - 01:29:11:08

Speaker 2

But I think saying, Yep, I want it because I know that I have rights.

 

01:29:11:10 - 01:29:12:01

Speaker 1

It sends an.

 

01:29:12:01 - 01:29:42:08

Speaker 2

Important reminder sometimes to the IEP team that as family members you are an equal part of that IEP team. Your voice matters, your questions matter, and and it's not educators versus families. It is truly a equal partnership and a team. And I think sometimes the same. You know what I have I guess I have rights too, and I have questions about that or I I've looked at these souls and I want to figure out how was this goal that we are creating?

 

01:29:42:08 - 01:29:46:17

Speaker 2

How's that going to support my student and meeting that?

 

01:29:46:20 - 01:30:16:11

Speaker 3

So I was just going to add one little thing to that as it just bubbled up in my mind. It's one of my big passions, but something you said triggered it. When we think about looking at those standards, we're thinking usually math, science, history, all of that. But almost every division or every system across the United States, somewhere on their website, or at least if they don't have a piece of the website, they've got it somewhere.

 

01:30:16:13 - 01:30:37:15

Speaker 3

Is also there standards for technology instruction. And that is in this day and age, just as important. So I just wanted to add and I'll talk about that I'm sure some time during our conversation, but I just wanted to add that other little tidbit is when we're thinking about looking at those standards is don't forget about the technology standards.

 

01:30:37:15 - 01:30:38:13

Speaker 3

Right.

 

01:30:38:15 - 01:30:57:18

Speaker 1

What struck me, Meg, as well is you pointing out how important the family is on the team. I like to say that the most important member is the student. The second most important member are the parents or caregivers that are involved because they're the ones that live it and experience it and see it.

 

01:30:57:20 - 01:31:25:10

Speaker 2

I think that, yes, that the student is the most important member. I, I had somebody asked me recently, how many times did you have a student show up at your IEP meeting? So I said every single time, because I think even in preschool, having the student be present, I was that teacher that be walking down the hallway with like all these boxes of manipulatives and toys and coloring things because we were going to play if we had to.

 

01:31:25:12 - 01:31:48:03

Speaker 2

Having the student present brings back the human aspect and brings back why we're here and that that's important. You know, I don't take my child to the pediatrician's office without my child present there. They're there. They're having a conversation at the pediatrician with me. And I think that the child should be present in the IEP process as well.

 

01:31:48:03 - 01:32:12:06

Speaker 2

And even in preschool. This is a plug for a different time. They can start being involved. You know, again, they can say during their present level, their strengths. They can say, Hey, I'm really good at running, or they can point to things that they like, or they can show pictures or they can draw, they can have a voice in that IEP process.

 

01:32:12:06 - 01:32:19:03

Speaker 2

And I don't think it's too young to have them start having a little bit of a voice in their IEP meeting.

 

01:32:19:05 - 01:32:55:15

Speaker 1

I totally agree. I think having your child, your loved one students attend from the get go is really important and I want to remind people that they might not be able to participate. But being there is important because I know sometimes I'll hear stories about a parent helping a child do a whole PowerPoint or, you know, presenting at their IEP meeting, and that stuff kind of hurts some people to hear, If I were to do that for my son, that would be just more work on me and he would probably fight it because of overwhelm or whatever.

 

01:32:55:17 - 01:33:13:15

Speaker 1

But being there is enough. I hope that whoever's listening when you hear this, you take what you need from it and you don't feel like you're not doing enough. Because I know that parents are doing enough and we carry the world on our shoulders and that's stress. And I wish someone could go back and tell me to enjoy my kid.

 

01:33:13:17 - 01:33:23:11

Speaker 1

So I think everything you're hearing now, okay, yes, try to do it, but also do what you can and just be a parent and live your life, too.

 

01:33:23:13 - 01:33:45:16

Speaker 3

I'm glad you said that. I wanted to add how important that is to recognize as well. There were years I've always been a really involved and pretty intense parent, but there were years speckled throughout where I didn't do quite as much for whatever reason, what whatever was going on with our family, you know, there would be a couple of months period where I just had backed off.

 

01:33:45:20 - 01:34:05:16

Speaker 3

I needed to I needed time to kind of recenter myself. I was noticing maybe something not going well at home or whatever, the kids, whatever the reasons. So I just wanted to validate that statement and how important it is to also recognize your own mental health and your children's mental health through the process.

 

01:34:05:18 - 01:34:23:17

Speaker 1

Yeah, I think we forget that sometimes we push and I have to remind myself how stressed I feel and I'm able to say that and verbalize it, but my kids can't. And so when they're like, I don't want to do it or, you know, behaviors, communication. We have to remember this is hard for them, too.

 

01:34:23:19 - 01:34:56:24

Speaker 2

And I'm glad you guys brought that point to because I wanted to make a point. And again, my perspectives, early childhood, perhaps sitting at a long IEP meeting for children for any early childhood age student is really tough. And so as a parent, if you're feeling uncomfortable that your child may start to struggle and may start having communicating that they don't want to be there anymore and then maybe work out with the team, hey, can can we figure out a way to do this where I can have somebody come pick up my child or can we take a break?

 

01:34:57:03 - 01:35:19:02

Speaker 2

There were times that I would ask the family or, Hey, are you comfortable if I get my educator to come and we'll take the child back down to the classroom OR do we just need to go to a different space so that when some discussions need to be had, that the parents then also feel like they can fully focus on the discussions that are being had.

 

01:35:19:02 - 01:35:27:22

Speaker 2

So I think it's it's also finding the comfort level that's best for you and for your family and communicate that with the IEP team.

 

01:35:27:24 - 01:35:54:01

Speaker 1

Yeah, and I think it's very important for the students to be in the meetings. But sometimes parents caregivers need to discuss something with the team that the student probably shouldn't hear. Unfortunately, we do have to have those conversations, but having the student there, at least initially it does, humanizes it, especially if it's a contentious relationship. Which actually brings me to my next question, which is what are some of the biggest challenges you face?

 

01:35:54:01 - 01:36:15:18

Speaker 1

And I know that I had a really tough time when my son was in kindergarten and first grade. We have since moved, but we lived in Northern Virginia at the time and he was the first kid in his elementary school with Down's syndrome to be in the general ed classroom. Everyone else was put in an ID classroom, an intellectual disability classroom that was literally the name for it.

 

01:36:15:20 - 01:36:40:00

Speaker 1

And so in kindergarten, it was a little bit of a fight to get him in general. ED But it happened. And I remember having conversations with the speech therapist who was not so gently pushing and saying, Oh, what about the classroom and the first grade team? I would get calls almost every day to the point where I still get a call from the school, and I think it's going to be negative.

 

01:36:40:03 - 01:37:01:23

Speaker 1

It really felt like they were building a case to move him to a self-contained classroom. Thankfully, I have done, like you were saying, we have the training and the education and the time to advocate strongly and fiercely. But I know so many parents who want their kid in a general ed classroom who are denied it. They don't even have a chance.

 

01:37:01:23 - 01:37:24:18

Speaker 1

The school, their interpretation of the law is that this student is self-contained and maybe they push in for this and this and this and that in the schools mind inclusion that's a personal challenge and I handled it by being tough. But that was years ago and I still feel that it still hurts. And part of the reason I do this work is because I know families are still dealing with that.

 

01:37:24:18 - 01:37:38:18

Speaker 1

And it's devastating to me that we can't include kids in a meaningful way or just at all. So, Dawn, what are some of the challenges that you faced and how did you handle them?

 

01:37:38:20 - 01:38:00:03

Speaker 3

So I have to laugh because we had the same experience, ironically, with a speech therapist when we were trying to decide on or when we were having our transition meeting from early childhood to kindergarten, you know, and I was pushing for the regular education classroom and the speech therapist was the one who was the most vocal. So I just think that's kind of funny.

 

01:38:00:06 - 01:38:37:24

Speaker 3

In fact, when my daughter graduated, I actually tried to look her up because I would just send her a letter. But anyway, that was a big challenge. When I think back about it, trying to advocate for her home school and, you know, the mainstream classrooms versus self-contained. But I think the biggest challenge that we had was technology, the accessible technology, accessible digital materials and access to a qualified instructor, someone who understood the software that she needed to use as well as what was going on in the classrooms, like understanding it from an educational standpoint.

 

01:38:38:01 - 01:39:02:19

Speaker 3

There were a lot of instructors that teach the assistive technology that she uses that are not involved in education and that just we did try that, but that didn't work out very well. You know, I started advocating for instruction in the technology I'm speaking about is screen reading technology for people who are blind. And there's also magnification software that's very similar for people with low vision.

 

01:39:02:23 - 01:39:41:10

Speaker 3

So I started advocating when she was in elementary school. Really, if I think back about it, I wish I would have pushed harder for more intense instruction. She would get like a couple of weeks in the summer. You know, we would generally get that in elementary school during my extended school year services. And of course, if she didn't use it and nobody could support her throughout the school year, she lost the skills and so we'd have to revisit it when she entered sixth grade, that is when there were several school divisions in Virginia who had started the pilot program of going into the I think it was the 21st century learning skills or learning platform

 

01:39:41:10 - 01:40:03:21

Speaker 3

at that time is what it was called, basically where students were given laptops and they started to move to using all digital materials, digital assignments versus paper assignments, and nothing was accessible with her screen reader. That was the one time it really got intense and I had to start, okay, let me buckle down and make sure everything's in writing and advocating keeping my documentation.

 

01:40:03:23 - 01:40:25:14

Speaker 3

And it was a year and a half before it was resolved, which really when I think about what some other parents have to deal with, that wasn't very long. But I swear that year and a half it almost broke me. That was the toughest year. Those were the toughest years. I really thought I was going to have the breakdown.

 

01:40:25:16 - 01:40:43:13

Speaker 3

I don't think there was a day that went by that I didn't cry. A yanked my daughter out of school, moved on to homebound, eventually ended up having to get attorneys to get it resolved. And we did. They settled with us and we ended up getting everything we needed. And they put things in place to correct the actions within the division.

 

01:40:43:15 - 01:41:06:24

Speaker 3

But I wasn't going to back down. You know, my daughter was sitting in a classroom not understanding what was going on and not having instruction and even how to access the things that she needed. So. Right. I don't know. That was I kind of lost sight of your question, Erin, but that that was kind of that was the toughest period of time for us in how we handled it.

 

01:41:07:01 - 01:41:31:17

Speaker 1

It's wild to me, Dawn, because your story is one of many. These are matters of access and families and students aren't even able to access education. I know. I mean, we think about our personal examples, right, because of what we live in, our lived experience. I mean, you think about students who need nursing support during the day, but you have a nursing shortage.

 

01:41:31:17 - 01:42:08:18

Speaker 1

So if there's no nurse, that student can't go to school. And that happens when we're talking about communication devices and the lack of understanding how to get those to students and finding something that actually works for a student, it's shocking. I constantly think about why we're not teaching American sign language in schools as a secondary language. We're turning to packs in all of these forms of communication, and when we have one, there are students who could use ASL, but instead we're doing cumbersome card things that they tell families, Oh, just take this home.

 

01:42:08:20 - 01:42:32:06

Speaker 1

Who who can live their life carrying around a deck of cards while you're trying to do something? I've tried it. It's ridiculous. Even the iPad sometimes to help. It's these ideas that are thrown without any thought or consideration for what our life is about and the things that started school that go beyond or the fact that schools just aren't accessible.

 

01:42:32:08 - 01:42:54:01

Speaker 1

Hearing loss and the fact that we don't have microphones readily available in schools at one point when my son was dealing with hearing loss and I was trying to get hearing aids, but it wasn't there yet, and the audiologist said you should have the school get an FM system, which for anyone who doesn't know, it's the system that helps amplify for a student with hearing hearing loss.

 

01:42:54:03 - 01:43:28:11

Speaker 1

And the school claimed that they don't use FM systems anymore when in fact they very much do and they're everywhere. And he uses one now, just these roadblocks that are there because of misinformation and this breakdown in higher education where our educators are not educated in special education and universal designs for living and learning. And here we are as parents and individuals, spending so much time fixing things that shouldn't be a problem.

 

01:43:28:13 - 01:43:43:01

Speaker 1

Okay, so now I'm just venting. But I mean, it's there. And I guess I just want to validate anyone who's listening, like everyone deals with it. And there are people trying to fix it. Meg, turning to you for some of the biggest challenges, I guess maybe you haven't faced, but you've seen.

 

01:43:43:03 - 01:44:06:09

Speaker 2

I wanted to touch base real fast on what you were saying about higher ed because I demonstrated this in the beginning, but I also adjuncts some here at James Madison University, especially for James Madison University, he has an inclusive early childhood educator program. So they are educating future teachers to be duly endorsed in early childhood and early childhood special education.

 

01:44:06:11 - 01:44:31:00

Speaker 2

And one of the things that I have been working with, with a group of students is understanding and making that universal design for learning nature and to set up your classroom so that if you have a student who is using a communication device or an alternative form of communication, it is not just that one student that is using it, but it's everybody.

 

01:44:31:00 - 01:44:55:11

Speaker 2

So we're not singling out anybody that we are really making a classroom that has a total communication system, whether we have corps boards, if we have pictures, if we have signs, if we have English language learners, we have multiple languages posted in our classrooms so that we're really working on making this space as accessible to everything single learner.

 

01:44:55:11 - 01:45:22:19

Speaker 2

And I think that's where when we talk about higher ed, that's where we really need to start, because one of the challenges I think that I experienced the most was transitioning students out of my classroom into kindergarten, into those general ed settings, because the teachers had not had the training and they didn't feel like they have the knowledge to support that.

 

01:45:22:19 - 01:45:50:01

Speaker 2

The students that were coming and that was causing them angst and anxiety. So we started having transition conferences in February and we would start breaking down what they need. And then I would even support the student a little bit into the beginning of the year to check in with the kindergarten teacher, to check in with the kindergarten case manager to make sure that things were put in place.

 

01:45:50:02 - 01:46:13:07

Speaker 2

If I had things that I used that if I could pass them along, I would pass them along so that things were consistent. But I think it's sometimes the lack of the lack of learning. We have professional development that lots and lots and lots of things in education. We haven't really touched base a lot on that universal design for learning and that support it.

 

01:46:13:07 - 01:46:20:07

Speaker 2

And I think that's something that as an education system as a whole, we need to work on and address.

 

01:46:20:09 - 01:46:51:13

Speaker 3

It benefits everyone. It makes me think of the handful of teachers that we've had experience with over the years and they always stand out that have had some of that training in a variety of ways. But you can tell and it it impacts and impacts everyone in that classroom. Everyone, when I think back, I could actually see it with the elementary school students as well with this one teacher that is popping into my mind, but they are naturally supporting each other as well.

 

01:46:51:15 - 01:47:17:03

Speaker 1

It's funny you say that, Dawn, because I remember when I moved. So I live in upstate New York now. We relocated from Virginia and when I moved and left that very much not inclusive environment and my son started elementary school up here. He got invited to a birthday party for the first time, and I truly believe it was because they could feel that inclusiveness from the teachers.

 

01:47:17:03 - 01:47:33:16

Speaker 1

The students did and they belonged. Whereas before he was in other. And it just is there. It's not just the practices, it's the mindset. And if we can shift those mindsets, that's what is that really huge shift?

 

01:47:33:18 - 01:47:34:19

Speaker 3

Absolutely.

 

01:47:34:21 - 01:47:36:12

Speaker 1

Yeah.

 

01:47:36:14 - 01:47:59:23

Speaker 2

And I think for me that's been one of the biggest challenges too. I am a self-proclaimed inclusion ist. I often don't know. I'm learning in my in my new position. I had no other kind of professional experience other than full on inclusion. My view, my my way of thinking of like, well, why can't we include them? Why can't we modify things?

 

01:48:00:01 - 01:48:25:21

Speaker 2

Why not? But I recognize that that's not always the mindset. And so I think one of the biggest challenges is overcoming that. I was thinking earlier about how we overcame one of the challenges. We were transitioning that student from preschool to kindergarten. In the kindergarten team said, Well, you have you have a peer educator with you all day long.

 

01:48:25:23 - 01:48:44:12

Speaker 2

And so they get that one on one support. And so what we did is that we took the preschool schedule, we took the kindergarten schedule, and we highlighted all the places that that student was really getting. One one support, which was very little. And then we looked.

 

01:48:44:12 - 01:48:45:18

Speaker 1

At.

 

01:48:45:20 - 01:49:10:08

Speaker 2

The kindergarten schedule and said, okay, well here, here that areas that the student would need support and oh, well, you know, one of them is just getting from the bus to the classroom and we have lots of adults in the hallway. So how can we solve that? Oh, and then look upon this. This will be solved by the speech language pathologist coming into the classroom and providing services.

 

01:49:10:08 - 01:49:32:05

Speaker 2

And oh, look, this is the time that the special educator coming into the classroom can support this. So it's really not this intense need. And then look at all the peer support. Let's let's look at the peers and the friendships that they have made and let's put a couple of those peers that can support the student into the classroom.

 

01:49:32:05 - 01:49:58:09

Speaker 2

And I think once you start looking at it from a different lens, that helped, but that shifted, it come causation of, well, there's no way we can support the student too. Okay, I think we can do that. I think sometimes it's just taking a step back, taking a moment and breathing and saying, okay, let's change the lens, to change, to focus on how we're looking at it.

 

01:49:58:11 - 01:50:22:08

Speaker 1

Something I will say to my son's school team over and over again is my son is going to learn more from his peers than he will from his teachers. So he needs to be included in a general, a classroom, a self-contained classroom is not what the real world looks like. So why are we doing this now? If school is to prepare them for life, then why are we putting them in this little bubble?

 

01:50:22:10 - 01:50:42:10

Speaker 1

I don't want that. So my son may never be at grade level. A student may never be at grade level. You can still modify the work and you can still have them with their peers, and that's critical for their life after school, which is much longer than your life in school. But it's hard for people to understand that this they don't live it.

 

01:50:42:12 - 01:51:07:04

Speaker 2

Well and their peers are the ones that are going to continue to follow them, not their teachers. Again, I think all these stories I'm telling, I'm thinking those of my students and in my mind, they're still preschool age where they're not anymore. They have outgrown the need for Mr. Ruga, and that is wonderful. But their peers at that same network of peers that follow them.

 

01:51:07:06 - 01:51:38:00

Speaker 2

And so I think it is important that we work on having that support from the get go. Research shows that inclusion and having inclusive environments builds more empathetic learning communities, builds an understanding for peers with and without differing abilities. It just benefits everyone. And I think that's the mindset that we have to start shifting towards.

 

01:51:38:02 - 01:52:04:07

Speaker 1

Yes, and their peers are going to be the ones hiring them when the time to come to employment happens. Inclusion in school is what will lead to inclusion in life. And it's interesting to Meg, you mentioned quite a while ago now, but you you reminded me of the handling of the baton from one year to the next. And Dawn, I'm curious if you had to do this every single school year, you have to do it all over again.

 

01:52:04:09 - 01:52:22:23

Speaker 1

And this is one of those other frustrations when we talk about universal design, simple things that you request. One, you're like, Hey, there's sensory issues. Can we put tennis balls on the bottom of the chairs so you don't have to hear that? Or, hey, can we get better lights than the fluorescent ones? Because that's really disruptive sensory wise.

 

01:52:23:00 - 01:52:39:00

Speaker 1

Not only does that benefit everyone, including the teachers, and if it was just a best practice within the school, you wouldn't have to redo the whole thing every year. I mean, it's like a broken don. Have have you felt that in your years.

 

01:52:39:02 - 01:53:06:15

Speaker 3

Now, which part? Yes. So I think that where I saw that broken record piece the most was in middle. I'm not sure why that was. I mean, yes, we had to revisit things every year, but and I saw this with elementary school and then again with high school is that those first couple of years in that school, it was definitely intense.

 

01:53:06:17 - 01:53:29:03

Speaker 3

But after a couple of years after like the first two years, the teachers, the up and coming teachers, most of them were already familiar with my daughter, you know, seeing her in the hallway and as she's changing classes or whatever and talking to other teachers and seeing her at events and things like that. And she was a very it still is a very social child.

 

01:53:29:03 - 01:53:46:14

Speaker 3

So everybody's her friend. And so a lot of times she knew these teachers that she was getting. And so there was a little bit of BPD in preparing, but not as much. And the other thing is same thing with the students. They had gotten to know her. Now we we moved to a different county when she entered high school.

 

01:53:46:14 - 01:54:09:03

Speaker 3

And so that was kind of like starting over in a new division. But as we got settled in the students, she was in their classrooms. They got to know where they were, the ones who could step in when there was a substitute teacher. Right. Especially as we faded out, the poorer support students would step in and be like, Oh my gosh, you're having a computer problem here.

 

01:54:09:04 - 01:54:27:09

Speaker 3

Let me let me help you with this. Or oh my gosh, did did so-and-so teacher might have forgotten to share the accessible document. And this happened one time that I remember. And my daughter is using her smartphone to text me from school. She's panicking, right? And then I get another Texas. Oh, no worries. So-and-so fixed it for me.

 

01:54:27:09 - 01:54:36:21

Speaker 3

One of the other students just, bam, got it done. Senate emailed it to her. It was taken care of. I don't know. Again, I've forgotten your question.

 

01:54:36:23 - 01:54:48:04

Speaker 1

No, you answered it. You did? It's. Yeah. How do we make sure the IEP is being followed? Dawn, I'm going to turn to you first. Again.

 

01:54:48:06 - 01:55:12:10

Speaker 3

This is actually become like a little bit of a concern for me in regards to the topic of homework. That was the best gauge for me in knowing whether her goals were being addressed. Maybe that was because so many of her goals were around literacy, because she was learning Braille and learning the Nemeth code, which is the Braille math code.

 

01:55:12:12 - 01:55:36:24

Speaker 3

And I'm thinking again, mainly elementary years is what I'm referencing to now. But having her work and doing that with her is how I was able to know a lot at the time if things were being addressed. Her communication skills also kind of gauging how that was improving. And I could tell based on the way she was responding to things if that was being worked on.

 

01:55:37:04 - 01:56:01:07

Speaker 3

Yeah, I mean, her work for me was the biggest part. And again, like kind of like I referenced earlier, I was a little bit over the top. People might have thought of me as a helicopter parent, but I felt like I needed to be to be able to know again if those goals were being addressed or not. Then as she got older, it was asking questions like always trying to know throughout all of the years what was being worked on.

 

01:56:01:07 - 01:56:19:05

Speaker 3

And I might have asked the teacher like, Hey, what are you guys doing this week at school? You know, I might ask on a monday or something like that. And then I'd ask my child questions about it. So having that conversation and then when things moved to digital as she got older, I kept things logged in as her.

 

01:56:19:05 - 01:56:40:22

Speaker 3

So I had access. I didn't do her work or anything like that, but it was my way of being able to see one. How things being presented to her too. Was she able to submit them? Was she able to complete them? How did she complete them? Where again, I didn't look at every single thing every single day, but at least every couple of days.

 

01:56:40:22 - 01:56:49:06

Speaker 3

I was as she got older, I would kind of check in on things to see how she was doing. Right. Yeah. Well.

 

01:56:49:08 - 01:57:14:02

Speaker 1

It's interesting you say that because I keep thinking about how different everyone's situation is. I have to look at my son's IEP, but I think I have that no homework is part of his IEP because it is really difficult to get him to engage at home and for my family, which I know is in many families, I'm not able to ask him about the school day when I say Hello, how was your day?

 

01:57:14:04 - 01:57:41:00

Speaker 1

He's like, Thanks. And the cutest way. Like, really happy to see me. Arlo, How is school today? Thanks. That's his answer. And it's amazing because in his way, saying it was good and so for me to have a conversation with him will show me nothing about what's going on. So in my case, it is monitoring. And unfortunately I've had situations where there have been services that he has not gotten because of, again, there's been a lot of shortages.

 

01:57:41:00 - 01:58:04:09

Speaker 1

We're living still through unprecedented times with the pandemic and it's really changed things. When you have a child who cannot tell you what's happening at school, it's it's another layer of vigilance. And I have to be completely honest. I'm a strong advocate and I care deeply. But that is something I really cannot keep up with. I just can't.

 

01:58:04:11 - 01:58:20:15

Speaker 1

He's my oldest of three, two other kids, even though I have access digitally to what he's doing at school with those, what, seven different courses, I can barely get my job done. So how am I going to do that? So, Meg, maybe you have the magic answer.

 

01:58:20:17 - 01:58:48:23

Speaker 2

No, I don't think I have the magic answer. I'm trying to just think I have found each family was different. Each student need was different, and my preferences changed over the years. I often tell people all the time when I became a mom, I became a much different teacher. I understood that need for communication and really clear communication more once I became a mom.

 

01:58:49:00 - 01:59:25:17

Speaker 2

I also I never like to keep a journal back and forth because as tone can be really perceived really differently. So I always encouraged families. If you have a question, let's talk about it on the phone. I had a family that wanted to know because their child was not able to communicate what they did during the day. And so we worked out a form that either myself or my para and then whatever related service provider came in to the classroom just really quickly, a circle.

 

01:59:25:17 - 01:59:54:10

Speaker 2

So if speech came, speech came and circled. Hey, I came today. This is the amount of time that I worked on. And then we would just say, just put go two or three. Like, what did you address today in the IEP? And so that that way the family could see that we were still addressing the IEP goals. We had a student one year that it was really important for us to keep track medically the number of changes, how much fluid the student was consuming.

 

01:59:54:10 - 02:00:20:15

Speaker 2

And so we had a separate form for that. And then scheduling weekly or biweekly, even five minute check ins on the phone with the family. I'm a communicator, so I always like to really have clear communication. We also did progress reports, not just your IEP, but because they were an inclusive setting. I said, Nope, we're going to take the same.

 

02:00:20:15 - 02:00:51:00

Speaker 2

We did this authentic data collection for all the students. So they're also going to be observed through this data collection site that we have, and we're going to track learning and development the same way we're going to track all students because development, child development is a continuum. So it just may be a little different where your child is on the continuum, but you're going to get the snapshots of, Hey, today we worked on this and here's a picture of your child doing this activity.

 

02:00:51:00 - 02:01:12:19

Speaker 2

And this is what developmental milestones that we worked on. But that's early childhood. And I understand that that's not that's not upper elementary or middle school or high school. So I think I think goes to communication and figuring out what works best for you and for your teen, I think, is that that's the best way to go about it.

 

02:01:12:21 - 02:01:42:09

Speaker 3

Yeah, I think that's important. I mean, that is going to look different for everyone. And just to kind of circle back around to what I was sharing about the way I approached it was that always checking every single day or every couple of days know if there was a comfort level there, and I felt like things were progressing then I wasn't having to look every time, especially she got older, I would pay more attention when I was concerned about something and thinking that maybe something wasn't being addressed.

 

02:01:42:09 - 02:01:54:22

Speaker 3

And I did pay more in the elementary years as well. But again, as she got older, it was only if I was really concerned about a certain area.

 

02:01:54:24 - 02:02:19:00

Speaker 1

Yeah, I've got to agree to the communication piece is so critical. I think we hear this a lot, but there might be people listening who maybe not has heard it is document everything, paper trail, everything. You don't want to have that kind of relationship. But if it's if you're checking on something that's supposed to be in the IEP, you email it to the teacher, you copy whoever's necessary.

 

02:02:19:02 - 02:02:39:00

Speaker 1

And unfortunately sometimes they'll want to call you back with that information. And and okay, fine. But then say, okay, I'm going to take notes from this conversation and then I'm going to send them back to you. Can you make sure I got it right? Because you have to make sure that it's documented. And I think that's the best way to say you're on it.

 

02:02:39:02 - 02:02:57:23

Speaker 1

Another thing that unfortunately not everyone can do, but dropping your kid off at school or picking them up, depending on the age range, you might run into a teacher there, you might run into other people there. That level of familiarity as they see you, when occasionally or you know, for me it's frequent because my son walks to school, so I walk him to school.

 

02:02:58:00 - 02:03:18:15

Speaker 1

People are able to ask me a question that they're not comfortable doing via text or email. We're able to have those conversations just being present when possible, which I know isn't possible for everyone. We all work. You're not having a flexible schedule. It's not doable, but just trying to do that when you can.

 

02:03:18:17 - 02:03:44:08

Speaker 3

I used to do a drop off of donuts periodically and you know, it was funny. I used to drop them off sometimes to the teachers, but the office staff because the office staff, you know, they became really familiar because of that. This is back when I was having to go into an office and I couldn't do the driving in the morning and pick it up in the afternoon, but I could slide by periodically if I had an appointment that day and drop off donuts or fruit or something.

 

02:03:44:10 - 02:03:52:02

Speaker 3

The office staff told me more things than anyone I know.

 

02:03:52:04 - 02:04:14:02

Speaker 2

And I was going to and I don't know how you guys feel about this. And again, I would often tell my family's asked me, you know, if you want to see a datasheet, ask me it. It is my job. It is my responsibility to keep the documentation to show that we are working. So ask me for it if you have a question about it, let's tap.

 

02:04:14:03 - 02:04:40:05

Speaker 2

We always approach it again. Early childhood is a little different that IEPs are legal binding documents, but they're also fluid documents. And so if we're looking at a student and let's say they meet their goal, well then, then then have the right to say, Hey, guess what? I've noticed that my child's doing this. What have you noticed? Well, yeah, guess what?

 

02:04:40:05 - 02:05:09:06

Speaker 2

I want to meet because I want to change that goal and it doesn't have to be within that time period of the annual review like you had there. Right. As A parent to call that teen back to gather. And I think that from the education side is not always clearly communicated. But again, it goes back to that purple book of rights that you have the right to call the team together.

 

02:05:09:06 - 02:05:18:02

Speaker 2

And when you call the team together, guess what? They have to come together. And so exercising that right, I think is really important.

 

02:05:18:04 - 02:05:43:08

Speaker 1

I'm so glad you said that, Meg. I'm also glad you mentioned the data because it is a requirement. So I believe that that is probably the best measure If you're concerned about services and what your child's accessing, you can make it clear up front. I want a data sheet at whatever intervals. So how can caregivers help their child prepare for that new school year and of course, the new school.

 

02:05:43:12 - 02:05:45:10

Speaker 1

Meg, let's start with you this time.

 

02:05:45:12 - 02:06:08:07

Speaker 2

I think it's communicating with, if you can if you know the teacher, communicate with the teacher well in advance or asking the program coordinator or somebody for an example of the schedule, because if you look at the daily schedule and there's only one snack time and your child is used to snacking all day long, then figure out how can we work this in lunchtime?

 

02:06:08:10 - 02:06:34:24

Speaker 2

See if you can adjust the schedule so that lunch time matches. I do that as a parent Anyway, when Lizzie went into kindergarten, her lunch was the second to last lunch in the school, and so it's a very late lunch. So we started working that summer towards moving her time back. And we're doing it again this summer because now she has the very last lunch coming up.

 

02:06:34:24 - 02:07:09:09

Speaker 2

And so it's those little things of helping to adjust. I also told parents, I said, I know this is a silly, silly thing, but it's a school rule and it's a school policy. And so we're going to follow it to the best of our abilities. But we got to keep our shoes on. And so explaining maybe practicing with your child to keep their shoes on longer and then nap time, if you were transitioning to our preschool into kindergarten, I don't know how other school systems are, but our school system took away that rest time, so we started pulling back on rest time.

 

02:07:09:15 - 02:07:34:02

Speaker 2

And if your child really needs that three hour or two hour rest period, then then communicate that with the teacher. So that you guys can start figuring that out. If your child is a non rester, which is okay to start thinking about like what type of rest time bag or things that work well for your child that you can talk to the teacher about maybe providing.

 

02:07:34:02 - 02:08:01:02

Speaker 2

And so that helps them just have that quiet time when maybe other students in the class are resting. So those are little things. What is my favorite things that we used to suggest was? If the school has a playground, take your kid up to the playground and go play on the playground during the school year. Get used to being in the school, go walk around the school in preschool.

 

02:08:01:02 - 02:08:23:23

Speaker 2

We did family style dining, so we ate in the classroom and kindergarten. They had to start eating in the cafeteria and so looking in what the cafeteria looks like. So I think those are the little things. Reach out to your child's teacher. I know some people are like, Oh, I don't know if I like this, but I was a huge fan of home visits.

 

02:08:24:00 - 02:08:40:24

Speaker 2

So maybe see if there's a home visit or even if you can do a meet the teacher, maybe you want to go meet at McDonald's or Chick-Fil-A or on the playground somewhere so that you're starting to build that relationship with the teacher a little bit more as well.

 

02:08:41:01 - 02:08:42:21

Speaker 1

Dawn, what about you?

 

02:08:42:23 - 02:09:11:04

Speaker 3

Yeah, I would ditto everything that Meg shared. I think that preparing at the very least two weeks in advance, longer if you can, but with adjusting schedules, thinking about bedtimes, how much sleep is the child going to need to be able to wake up and function that next? So making sure they get adequate sleep and adjusting that bedtime and wake schedule I think is huge.

 

02:09:11:10 - 02:09:36:15

Speaker 3

Practicing some of the routines as well is very important maybe doing some dialog, some role playing. On if there's something that is very anxiety producing that you're aware of, you know, maybe doing some role playing ahead of time with the child as well. And again, like I said, everything Meg said, visiting the school, visiting the playground, all of that, as I mentioned before, and mapping out, you know, where their seat might be.

 

02:09:36:17 - 02:09:58:20

Speaker 3

What hall are they going to go down? Are they changing classes? And then the other thing that that is popping into my mind is preparing. One of the things that it actually took me a while to realize as a as a mom is that my kids feed off of my anxiety, right? I've done everything to prepare my kids.

 

02:09:58:20 - 02:10:28:18

Speaker 3

But if I prepare myself, if I'm rushing in the morning, if I'm stressed, if I raised my voice, that set them up for a horrible day. But if I was up and ready and calm and helped them get off to a good start, then nine times out of ten, they had a pretty good day. So I think that is something that is often overlooked as thinking about preparing ourselves as parents and thinking about how our energy affects our children.

 

02:10:28:20 - 02:10:54:24

Speaker 1

Oh, Dawn, spot on with that. You can feel it. You and it's the same in my house. I set the tone. I think the bedtimes are so important and starting to rotate those earlier. A big thing that we do is during the school year, no screens on on school days. So when it's getting close to school starting, we start to cut back that again.

 

02:10:55:01 - 02:11:22:20

Speaker 1

And especially no screens in the morning, no TV in the morning. And so leading up to the start of school, we cut that out again because it just just sets the tone. Even if you're kids older, I think the shows are important and getting them comfortable in whatever shoes they're going to wear, making sure their school clothes are comfortable because they've been in summer shorts with sensory issues and difficult with transitioning, making sure that the things they're going to take to school are familiar.

 

02:11:22:20 - 02:11:48:04

Speaker 1

So if you pack a lunch, it's that familiar, comforting lunch and snacks and making sure you intentionally show what's going to be in the backpack and what's where. A lot of people rely on social stories and they can be really useful, especially if they have your own pictures in them. I know that I send, even though this is sent to the school team, I'll send pictures family that they can put in the iPad or share in the classroom.

 

02:11:48:06 - 02:12:07:23

Speaker 1

So my son has something to talk about and feel engaged about. Anything to just add that comfort and take that anxiety away is so important. I know we're supposed to give our kids self-determination, all that, but for that first week, if I have to pack their bag for them to help that transition out the door be better, so be it.

 

02:12:07:23 - 02:12:31:15

Speaker 1

And wait for those special schools stringent rules. The next week. And then finally, because I think I forget this every year and I'm remembering it now after school, give them time to decompress because those first of weeks are exhausting and they're not able to tell us that they're exhausted. But I can feel it because my kids are typically cranky when they get home.

 

02:12:31:17 - 02:12:51:17

Speaker 1

They take it all out on me. And so it's just take a breath and I let myself be that punching bag, let them let it out on me. And then I give them a hug and go to bed early again and just remind myself that they're not able to express where they're at. So I just need to be that comfort station for.

 

02:12:51:19 - 02:12:52:19

Speaker 3

Yeah.

 

02:12:52:21 - 02:13:19:09

Speaker 2

I think Erin setting up opportunities for self care for everybody. I forget about it as an educator. My husband always the story of his first school year with me. I would come home and lay on the kitchen floor exhausted. There are so many emotions running. There's excitement there, anxiety. And as parents were also feeling that too, we always really just bring our house down a little bit.

 

02:13:19:11 - 02:13:45:20

Speaker 2

My husband loves to watch sports. I say, okay, sports are going off at a certain time. So we're not, you know, engaging in this real high energy level. We're going to calm things down and then give yourself some grace as a family to practice self-care and to feel all the feels that back to school has. As I often forget, even Lizzie will get real emotional changes.

 

02:13:45:21 - 02:14:06:22

Speaker 2

Difficult for her, change is difficult for lots of people. And so I have to recognize that at bedtime we're going to be we're going to be doing a little bit more comforting at bedtime and listen to all the woes of the world. Maybe, and giving our self just time as a family and grace to kind of just move through that transition.

 

02:14:06:24 - 02:14:07:18

Speaker 3

Yeah.

 

02:14:07:20 - 02:14:22:20

Speaker 1

My daughter, who's eight, really likes to listen to this meditation for sleep. It's like a ten minute. It really helps them to just center before bed. Dawn your kids are out of high school now, right? All of them.

 

02:14:22:22 - 02:14:24:22

Speaker 3

Oh, my God. I know.

 

02:14:24:24 - 02:14:39:08

Speaker 1

Oh, wow. If you could turn back time and give your younger self advice at various stages, who would you go talk to and what would you tell them? What? I mean, what version of yourself would you talk to? I don't mean who I mean. What version of.

 

02:14:39:09 - 02:15:17:08

Speaker 3

You? If I could go back, I think the first thing that I would tell myself through all the different years, all the different versions, parenting through this IEP process is to hang in there. It's worth it. Hang in there at various times. I would advise myself to practice more self-care. The earlier years. As I mentioned earlier, it took me a while to catch on about how my energy affects my children, and so those early years I would advise myself again to self self-care.

 

02:15:17:10 - 02:15:49:15

Speaker 3

Be prepared, stay calm. A lot of is pertaining to personal life. The one thing that is school related though, is that I would advise myself to have been more intense on technology assistive technology instruction earlier in the elementary years, right. Like kindergarten starting in kindergarten for screen readers for my daughter. But I think the biggest thing is, is the hang in there because it's worth it and you're going to get through this.

 

02:15:49:17 - 02:15:50:19

Speaker 3

You know.

 

02:15:50:21 - 02:16:14:16

Speaker 1

That's sage advice. If I could go back and talk to myself about school stuff in particular, I would talk to myself about ensuring more independence for my son. I was so afraid of him accessing education. I was so afraid of him doing something that someone would then, oh, he belongs in a self-contained classroom that I really push for one on one support.

 

02:16:14:18 - 02:16:35:13

Speaker 1

There's also the allotment and he runs off or he ran off a lot in a very dangerous way. And so there was there was actually a need for one on one. Support for safety is fast he bolts he needed someone that would always dedicate his time. And I did not trust the school staff to make sure someone was doing that.

 

02:16:35:19 - 02:16:57:22

Speaker 1

So I had one on one support listed in his IEP. However, like I mentioned earlier, not trusting a teacher to help him with the bathroom in preschool and knowing even though I told every single aide that he had please be a fly on the wall and just swoop in when you help. Their training is not that their training is to be helping that kid at all times.

 

02:16:57:24 - 02:17:09:01

Speaker 1

And I think it a disservice to have someone on top of your kid at all times. We're phasing that out now, but sometimes I really worry that it's too late or that I should have phased it out sooner.

 

02:17:09:03 - 02:17:38:03

Speaker 3

I would Ditto that. Erin. That is one other thing that I would, if I could tell my younger self is to really work on scaffolding out the para support or tapering out the Paris support scaffolding in her independent skills earlier much earlier. We eventually did it in the later high school years. And the other thing about that is that having that para there, I would have advocated for more training for the para as wonderful.

 

02:17:38:05 - 02:17:58:21

Speaker 3

She was the various ones we've had through the years about making sure that materials were adopted if they hadn't been adopted and providing access they also hindered friendships and hindered building independent skills. So yeah, it's a double edged sword. But yeah, that would have been something that I would have been more conscious of.

 

02:17:58:23 - 02:18:28:20

Speaker 1

Yeah, and I think we should both grant ourselves grace. Meg, maybe you have some input on this, but I think that that is also though a lack of proper higher education and training because that should be part of the support is teaching independence. There should be independence plans along with IEPs okay, so the teachers have the IEP goals, but whatever support staff is, there should have independence goals, but shouldn't all fall on the parents because some cases we're keeping our child alive.

 

02:18:28:20 - 02:18:52:22

Speaker 1

We're sending them with people we don't know. We see stories about abuse and this and that. It's terrifying when you have children who cannot speak, who cannot tell you what happened during the day. You want to know that there's someone there protecting them at all times. And I know one of my big fears of middle school was what if there are bullies What if my son's walking alone in the hallway and some someone just decides to hurt him?

 

02:18:52:24 - 02:19:06:19

Speaker 1

And so I think we do need to give our self grace. And I think this is to where we need to look to our schools doing better by this because parents, we put it all on our shoulders like it's our fault and it's not all our fault.

 

02:19:06:21 - 02:19:37:10

Speaker 3

No, I will I will add this and I don't know if Meg, if you have any ideas or anything to add to this. But again, one of those things that it took me a long time to to think about and figure out obviously a long time because it was high school before I really started thinking about it, figuring out how to craft goals, because we had been trying for several years to figure out how to train and help the parish understand how to fade out with various things.

 

02:19:37:10 - 02:19:46:08

Speaker 3

And so finally we had to craft specific goals and really spell it out for how to have the para fade out. I think that.

 

02:19:46:08 - 02:20:17:17

Speaker 2

Goes back to a lot of our parents don't get a lot of training. I know just speaking from some of the projects that we're doing in our office, we're doing lots of parent educator trainings. I always took it as the responsibility fell on me. My name was on the door. I was the responsible one. But when you're trying to facilitate a classroom of students and families, sometimes some of that parent educator time gets put to the side.

 

02:20:17:19 - 02:20:38:23

Speaker 2

But I also think as an education system, we can do better about carving out professional development and professional learning for our parents. This is just for it. I observe a lot of times, and I don't know how it is as you get older, but in the early childhood world we come in and we're going to interact with these children like they're our own children.

 

02:20:39:00 - 02:21:21:24

Speaker 2

We're educators, and so we're going to set some high expectations because our responsible bility to these children is to help them learn and to gain some of these independent skills. And so maybe, you know, setting up a plan, I always kind of go to the bathroom to toileting because I think that is an area that same. Okay, well, we're going to change the student, but we're going to really work hard on the student just learning if they're able to just start pulling up the pants by themselves or if I'm changing them, going to have them hold their shirt or they're going to hand me a white so that they are starting to gain some independence

 

02:21:21:24 - 02:21:46:06

Speaker 2

and then teaching that para to do the same. Maybe instead of walking down the hallway, holding the student's hand, maybe walk beside or in front of the student or behind the student, actually behind the student and see if you can pair it with a peer, but that adults support that. I think sometimes we want to jump in and provide how to work with our parents and adults in general to lead them out.

 

02:21:46:08 - 02:22:30:22

Speaker 2

And I'll get off my soapbox in just one moment. But I also would say, and I tell this to teachers, the time I hear we need more adults, we need more adults. And one thing I've learned, more adults does not equal better support. Sometimes adding more adults to the mix really muddies the water a little bit. And so looking at the supports that are needed and how they can be equally distributed between the adults there in the room and again, look at those peer support and how we can really use those peer support and what modifications can we set up in the environment.

 

02:22:30:24 - 02:22:49:01

Speaker 2

Erin, you were talking about your son eloping. There was a year I work in issues every single day and we had bells on the door and I carried a walkie talkie around. But Again, it's about modifying the environment so that the environment is prepared for the child.

 

02:22:49:03 - 02:23:07:10

Speaker 1

We're out of time, but I want to end on one sort of tongue in cheek now and I'll just start back to school. A lot of people, the whole society is always like, Oh, what have parents do to celebrate? The kids are back in school after summer and I always roll my eyes because like we said earlier, it's not a break for us.

 

02:23:07:10 - 02:23:23:17

Speaker 1

It's really busy and really work. But I have this dream of building time to maybe go have a cup of coffee in a cafe. Dawn and Meg, if you could tell a parent to do something, what would you say to do as a parent to celebrate having a child in school all day?

 

02:23:23:19 - 02:23:52:00

Speaker 3

Just relax. I mean, really, there's so much work that goes into preparing. And then summers are always intense no matter what. If you're doing s y or you're trying to navigate various camps or you're just trying to provide activities throughout the summer, right? You're exhausted come the beginning of the year, outside of that first day of adjusting while they're in school, you maybe take a couple of days for yourself.

 

02:23:52:00 - 02:24:02:03

Speaker 3

If you work, take a couple of days off and just do whatever it is that helps feed your soul.

 

02:24:02:05 - 02:24:28:22

Speaker 2

I think that's wonderful. I was also going to add take pride in what you have accomplished, just getting them to the start of school because it's race, it's a marathon run. And so celebrate that. My advice for new teachers and I would even say this is advice for everybody on this first few days of school, you are successfully able to get your students from point A to point B back and forth a few times safely.

 

02:24:28:24 - 02:24:29:14

Speaker 2

You did it?

 

02:24:29:14 - 02:24:30:01

Speaker 3

Yes.

 

02:24:30:04 - 02:25:01:19

Speaker 2

Yes So celebrate the fact that you got them in the building. Take pride in those. They may seem like small steps, but they're really big steps. So take pride in that accomplishment and celebrate that and celebrate you because you did a lot to get your child there. I think that's important to feel very prideful, to say, look, this, I got them into the building and I got them set and they're going to come home to me this afternoon high five, and be prideful in that.

 

02:25:01:21 - 02:25:03:09

Speaker 3

Absolutely.

 

02:25:03:11 - 02:25:16:12

Speaker 1

Yeah. Well, I'm already thinking about when I'm going to have you on to talk more about IEPs and Independence and all sorts of things. So with that note, I want to say thank you and I guess goodbye.

 

02:25:16:14 - 02:25:18:09

Speaker 3

Thank you for having us, Erin.

 

02:25:18:11 - 02:25:25:15

Speaker 2

Thank you very much.

 

02:25:25:17 - 02:25:48:24

Speaker 1

And thank you listeners for joining us. We're just getting started with this podcast and can't wait to bring you more. Please rate review and share and tell us what you want to hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting, Caregiving, Disability. I'm Erin Croyle. We'll talk soon.