Myth #7: Parents Don’t Care

Jul 1

Our fourth episode in the 10 Myths that Block Special Education Improvement Series.

In this episode, I’m joined by Cara Phillips and Megan Knapp, both parents of students with IEPs. Spoiler alert: they are both on the Joyful Inclusion Team! We share personal stories of our own experience and other families we’ve known.

We discuss a handout, 6 Tips for Family Partnerships that we prepared for this discussion. Feel free to download it and share with others who would find it valuable. Most of all, we hope you will be watchful for the assumption that parents don’t care and be quick with a reframe.

Welcome to the next episode of 10 Myths Blocking Special Education Systems Change.
This Myth is the Parents Don't Care Myth.
And I have two people that I am excited to have you meet. One is Meg Knapp and the other is Cara Phillips.
And let me go back, let me think. Cara, I met you in 2018 when I was working with the district where you were working on some transition materials for the students with significant emotional disabilities. And we started brainstorming about what we could do with families. And that was just amazing.
And you introduced me to Meg, who is my executive assistant I couldn't run my business without.
So the two of you are longtime friends. You've known each other longer than I've known either of you, but we've known each other for quite a while.
So Meg, why don't we start with you? Why is parent participation important to you?
It's important to me because when my daughter got her diagnosis, I didn't know anyone who had a disability, a child with a disability. I knew nothing really about disability and turns out I actually knew a lot of people whose children were receiving services, who had disabilities it's just no one was talking about it.
But because no one was talking about it I went into our IFSP and IEP meetings not understanding anything and not feeling like part of the team. And through a lot of hard work - and some really great team members for my daughter, who really stuck their neck out for us - I learned how important it was that I educate myself and participate. So it’s just really vital to me, both for my daughter’s sake and to help educate other parents that they should be participants.
But then didn't you step up and get more involved than just being the parent?
I did. Once we moved to the district we're in now, I found out about the Special Education Citizens Advisory Committee and I knew that I had to join that.
Actually, Cara was at an event that my daughter's class went to and she had a booth there and that's how I found out about it.
And so I said, “Yes, I need to join this to educate myself, to learn, to connect with other parents,” and that was a huge experience for me and really has given me a lot of support and a lot of education towards helping other parents as well as myself.
So pick it up from there Cara. Tell us about you and why parent participation is important to you.
It is super important and I think it's a similar story - or at least it started as a similar story - to Meg's.
My oldest son, who is now 19, was premature - I know, he’s 19! He was premature, and so, in that respect, I always say I was lucky that he was a premature child because we went into the Infants and Toddlers program in Maryland as soon as we brought him home. So I had that assistance in the beginning, I had people helping me - that was very helpful and understanding.
But as he transitioned into the school system, I really didn't know anyone else, either, who had students in these class settings and meetings and things and I felt lost, I felt completely unprepared - and, candidly, I felt a little embarrassed because I, you know, in my non-parent world I felt very successful and very intelligent.
And then I would go into these meetings and I didn't feel like I understood what was going on. They were using jargon and discussing things using educational speak, I would say, and so I felt lost and I didn’t know what to do. And so that was really my first experience.
And I used to tell other families that probably the first two, three years, I just signed and nodded. I assumed everyone else knew what they were doing ,and I signed and nodded, and just counted on others.
But over time, I had also, I had joined the Special Education Citizens Advisory Council and I participated there for eight years, I believe. But the first year I had started participating there I'd learned about a new position within the school system that was all about parent support and it just felt like a good fit. And I actually transitioned there for four years, where my primary role within the district was to help other families not only find resources and activities and things to do within the community, but to help them understand the special education process.
So, selfishly it was a job opportunity that I took for my own education, so that I could learn more about how to handle my children, and what to do, and understand the system better. But over time it became such an amazing opportunity to work with other families and understand from so many different perspectives how they felt - especially in a school environment, while they were dealing with everything else.
And that’s when we met!
Exactly.
That’s when we met, because we wanted to have a family engagement part of what we were doing with - what the teachers were doing the classroom. And that was an amazing partnership, and you and I also became friends, and that’s how I met Meg.
So, let’s get down to the problem of this Myth. The problem is: “Parents don't care.”
I've heard teachers say this. I have felt teachers believe this. Sometimes educators believe it. “Oh, we do this workshop for families. Nobody comes.” “We have IEP meetings. They don't show up or they come to the meeting and they don't say anything.”
So the problem is, I think educators are looking through their own lens they're thinking about the school schedule, the school timeline, what the legal - legalities are related to special ed and they don't pause a moment to think, “What's going on from that parent's perspective?”
It may look like they don't care because they're not taking action but I think there's a lot - there's there's an opportunity for them to look through the parents view and so I'm hoping that you have a story or two to share. So who wants to go first?
I guess I'll start, you know, because - like Cara just mentioned - I did, I just nodded and signed, and I would leave the meetings feeling so defeated, because one, I just didn't have any context, any framing around what they were discussing - they would throw out jargon, they would throw out acronyms, and I was a young parent who was new to this world. I didn't advocate for myself - which is something you know we work on our children doing - but they would always focus on the negatives, the things my daughter could not do, and I felt like we never talked about her strengths… How funny she is, how bright she is - it was just all the things she can't do. And anytime I would bring that up they would say, “Well that's what the IEP is about - it's what she can't do. So we have to frame it that way.”
And that just made me not want to be part of the team. Like, there was that divide anyway because of the jargon and because of my not understanding; but then you add on feeling like my child can't do anything, and that this whole team just views her as this lump of a person was really frustrating.
And now that I can advocate for myself, and that I do feel like part of the team, it is a more balanced conversation. I do get to hear these great stories about the strengths and, when there are weaknesses, like how do we play them off each other? She's struggling in this, but we noted this strength - how can we use it to get that weakness better? How can we integrate that strength into her goals so that she can meet it effectively?
And so that was - you know, I'm sure that some of her educators at the other end of the table were like, “Man this parent just really isn’t involved and isn’t participating.” But it was a balance of I don’t feel like I know what I’m doing and I just feel so drained at the end of these meetings that I go in dreading them.
So what I hear in your story, before we go to one of Cara’s stories, is there was a shift from your perspective. You were being judged, you were being blamed, you were excluded, that they were using language you didn't understand.
They shifted it to let's collaboratively problem solve because we know that your child can make great progress. So it's a whole shift in the context for the conversation.
I love that story - I mean I hate that story, and love it too it's a great illustration -
And I know I'm not the only one.
Oh, oh, no. I've heard similar, and in fact I'm a parent of two kids that had IEPs and I could tell my own stories there but this is about you.
Cara how about you tell us tell us a story of how this problem has shown up for you
Just a personal note to piggyback on what Meg was saying - I had almost the opposite experience with my first child, in terms of I would go into the meetings, and he was likable and everyone loved him, and the message I kept getting for the first couple of years while he was in the system was that he was always making progress. He was meeting his goals. Everything was so positive, it was wonderful, and it wasn't until probably his second grade year where I finally learned to ask more questions. And maybe even my husband stepped in and clarified a few things.
I didn’t realize that he - he has an intellectual disability - and I didn’t at the time - those first couple of years I thought he was still playing catch up. Not that he hasn’t grown and that he has amazing strengths on his own. But in terms of actual academics, he continued just to fall further and further behind. And I didn’t realize that because all of the messages I’d gotten in the meetings were that he was progressing and he was meeting goals, and that, you know, I just thought he was catching up.
And so I felt like things were maybe a little too sugar coated on my perspective. So I think that, definitely sharing the entire story is important, because - you know making sure that they understand the good things and the challenging things.
But also, ensuring that families truly understand what's being discussed. And I think that was a big miss for me personally And then when I started attending meetings with other families, I saw that a lot too.
And a lot of my role at that point became more of a translator, not necessarily for English, but for parents speak versus teacher speak.
For example, when teachers sometimes come into a room, unless you’re an educator yourself and they start telling you, you know, “Oh, they’re at level C or level K.” I had no idea what that meant, and I realized that a lot of other families don’t either.
So I think that it wasn’t that we didn’t want to be involved. To bring it back to are we absent? I remember being asked for input and I don’t think I really gave a lot of input the first couple of years. I know that I was asked for it. I remember having sheets sent home, in somewhat friendly language, to say, “Oh, tell me everything he does well. Tell me things he’s challenged with.” And I don’t think I returned those forms as often as I should have in retrospect. Because I was looking at it from, “This is a school thing, and I don’t really know how to teach him, so it must not be important.”
And that, you know - that was that was a myth from my, from a family perspective. But I just I didn't I didn't see where it fit in. I figured they were the experts, they knew what he needed, and I was relying on them. I didn't see the other side of it on why my my expertise from a parent perspective would be so important to how they might help navigate him in school, so that was that's that's one of the stories.
You learned that for yourself and then you translated that for other parents so they could step forward.
Absolutely.
So let's bust that myth - The Parents Don't Care Myth - and cross it off. The truth is if parents don't show up, if they don't participate in a meeting, or if they don't return those forms - there may be a reason. And maybe we should start by listening to the parents and encouraging them.
So I know that the two of you put your heads together and came up with some tips both for parents and for teachers which I think is amazing so and we're going to attach that to the show notes so that people can see them, but let's hear - Meg how about if you start first with the parent one.
So tell us about this handout.
So we put our heads together and really through our discussion thought, you know, there's things that educators need to know about parents, but also that we as parents should know.
And, you know, we have some great resources like Questions to Ask at the IEP Meeting, but this is more framed around advocating for yourself as a parent and really giving you tips on how to approach the team aspect, I guess I would say.
So one of the things we kind of touched on is, you know, we don't have this background knowledge.
So one of the tips for families is ask questions until things make sense.
This is something I really learned and admired about Cara in our education, the special education advisory meetings. She would stop someone, you know, and say, “Wait, you just used a lot of acronyms, and you're an educator speaking, and there's a lot of parents in here who don't speak that language. Can you reel it back and explain that - what does that acronym mean, what - what is the topic you're talking about - because you're speaking jargon.”
And so our advice is, you know, stop the meeting, and say, “Wait. I don’t understand what Level C is. I don’t know what a BIP is. I don’t understand the term you just used - please explain it.
I think we are trained to just think the expert is the expert and we should just be following along, but we have to understand our child’s IEP, 504, whatever plan is in place; but we can’t if we don’t stop and ask those questions
Great. So there are six different tips that families can implement.
And then, Cara, do you want to talk about the ones that - what educators can do?
Yeah, and it doesn't need to be overly complicated either.
So I think that probably my favorite one is making information accessible.
And what I mean by that is remember that when you're, you know, sending home a document that might be 30 pages long or, you know, with a lot of data and complicated information in it, that what would be incredibly helpful for a family would be to like have a one pager just just summarize it.
And thankfully, you know, since in the last year or two, we’re actually in a great place, educators can easily use AI - obviously, you know, not putting in proprietary information or something. But there is a really simple way to upload an entire thing and spit it out in kind of parent-friendly language. I’ve had educators do this for me in the past - that they just kind of summarize the key things that we really wanted to cover, but that was - that would be incredibly helpful for families. To be able to kind of say, “Ok, we know we just sent you a 30 page document, we’re going to talk about all of the things. But here’s really the meat of what we want to get to, and what you should probably focus on and just think about ahead of the meeting so you don’t feel put on the spot.” And it’s really helpful - I think that’s one of my favorite ones for sure.
Just to kind of piggyback off that, Cara, you and I had some really good conversation around that accessibility. And I think for educators, looking at it like scaffolding supports for your student, view it the same way for parents because there's cultural differences, language barriers.
And so I think that lens is really important both for the parent to advocate for themselves, but for the educators to just kind of think through it like you would give something to your students.
Okay so we have two handouts that are like one - it's a two-pager - so one page is for parents and one page is for the educators.
So by now, if you've been listening ,you know the Parents Don't Care Myth is not true. You have the handout to download.
And feel free to add comments about your experiences, or comments about which ideas you think will work the best, or which ideas you've just tried and they worked, too.
So thank you to both Meg and Cara and it's great to be united with you again. And I appreciate all the work that you put in to create these two valuable documents.
You're welcome.
Bye for now and stay tuned in two weeks we will have the next Myth.