20: Navigating School and IEP Meetings as a Neurodivergent Parent
IEP and other school meetings can be tough to navigate, especially when you’re a neurodivergent parent yourself. In this episode, Scotti talks with IEP advocate and mental health therapist Dr. Destiny Huff all about why these meetings can feel so difficult, how power dynamics and on-the-spot expectations affect parents, and what neurodivergent parents can do to make these conversations more workable—from requesting information ahead of time to asking for accommodations that allow them to participate fully on their child’s team.
Key Takeaways:
Many parents realize their own neurodivergence while supporting their child. Learning about a child’s diagnosis often helps parents recognize and make sense of their own lifelong experiences.
Advocating for your child can be harder when your own executive functioning is stretched. Processing information, organizing thoughts, and responding in real time can add extra pressure for neurodivergent parents.
Asking for what you need is effective advocacy. Requesting documents in advance, time to process information, or changes during meetings can make participation more manageable and ultimately more helpful for your child.
Parents are essential members of the team. They are the only constant in a child’s education and bring knowledge and experience to school conversations.
Resources:
Maria Davis-Pierre’s organization Autism in Black
Affirming Village Podcast with Dr Destiny Huff and Lisa Baskin Wright
Unlocking School Success podcast episode When to Include Your Child to a School Meeting.
Connect with Scotti:
Website
Instagram
Threads
LinkedIn
Connect with Destiny:
Ask a Question:
Got a school question on your mind?
Submit it as a listener question for a future episode
Transcript
20: Navigating School and IEP Meetings as a Neurodivergent Parent
Destiny Huff: [00:00:00] I can't tell you how many times I've had parents come to me. They do so much research. They've looked into so many things, asked so many questions, like they have got things together about what needs to be supported to their learner, but they just have a difficult time, you know, communicating that in the moment. And that's the piece that I think gets kind of disregarded a lot when it comes to IEP meetings is that we are expecting everyone to be on in the moment. And that's just automatically nervous system overload for parents.
Scotti: Welcome to Unlocking School Success, a podcast with the smart strategies and support parents need to help their kids thrive. I'm your host, Scotti Weintraub, parent coach, school navigator, and your go-to guide for turning School Stress and Chaos into clear strategies that work. Let's get started.
Have you ever wondered if you have the skills you need to support your child at school? My guess is [00:01:00] you do have some of them already and you can use a fun tool I have on my website to take a Golden Girls inspired quiz that helps you identify those strengths. That you already possess and how they can help you be the best support for your child at school.
So log onto my website, reframe parenting.com, and you can find that quiz to find out- are you a Dorothy or a Blanche? Personally? I'm a Dorothy, but let me know what you get.
Hi, and Welcome back to another episode of Unlocking School Success. I am thrilled to have you all listening in for what I think is gonna be a really useful conversation because I have got Dr. Destiny Huff with me today, and she is an advocate and a mental health therapist and helps parents just like us get the IEP support that they need for their kids at school. Hi Destiny.
Destiny Huff: Hi. Thank you for having me.
Scotti: Well, it is absolutely my pleasure. And I know you work [00:02:00] specifically on IEPs, but I just wanna start our conversation by saying like, what we're gonna talk about these ideas and hopefully a lot of really useful tips for parents, they may be able to be more broadly applied, not just to IEPs.
Destiny Huff: Absolutely. I mean, I think it speaks to whether your child has an IEP or a 5 0 4 plan or, you know, it is just, you know, having some barriers or challenges in the school setting,
Scotti: because I know that there are folks listening in who may fit into any or multiple of those categories. So, thanks for being here.
The conversation we wanted to have today is, is kind of a specific one, and not just about navigating IEPs, but navigating them. When you, yourself as a parent are a neurodiverse person
Destiny Huff: yes, absolutely. And I, you know, I'm late diagnosed autistic and adhd and my diagnosis came after my son's diagnosis, which he actually didn't get his diagnosis until he was in kindergarten.
And we are having a lot of barriers and challenges that we did [00:03:00] not foresee coming. And so, you know, I think that there has to be some more understanding and definitely some more education on. Neurodiverse parents supporting themselves. 'cause a lot of us do find out after our child has received their diagnosis, as well as, you know, anyone that's listening that's in the school system and the therapeutic settings and being understanding too the possible accommodations that that parent might need to actually access the support and be a part of the conversations for their learners.
Scotti: Well, I think there are a couple of key pieces you touched on right there. So I'm gonna start with one of them, which is that you say that you got identified as neurodiverse when your child did, and I will tell you that I hear this story all the time. Mm-hmm. Mm-hmm. So is this something you're hearing from parents too?
Destiny Huff: Yeah. Most of the parents that I come across that I work with, that a lot of times they suspect. That they are autistic or DHD and they haven't sought out a diagnosis yet. But it [00:04:00] always comes after their child has been identified, whether they've been identified in the school setting through the special education evaluation and testing.
But you remember the school doesn't diagnose. They categorize for eligibility based on specific criteria or their learner has identified in early identification through a private evaluator due to recommendation by a primary care provider or pediatrician and has that private official diagnosis and then the parent similarities and things like that.
So I hear that quite often. That first comes the child's diagnosis. Then comes the parent suspecting that they also have a diagnosis.
Scotti: I find this so interesting too, and I'm curious why you think so many folks have not yet been diagnosed, why do you think that that has happened? That it isn't until adulthood when they see challenges with their own kids?
What? What do you think's happening?
Destiny Huff: I think it's quite honestly just related to lack [00:05:00] of education and stigma. In society as a whole, right? Because my sister and myself and my mother's sister are both educators. But we were having, me and my sister were having a conversation the other day about just how, when we were growing up.
We did not see a lot of learners that would be considered in special education. They were kind of segregated in where they were located in the school setting, and you would see them periodically, but a lot of them were not in general education classrooms and you just were not seeing them and having access to them.
I know also in the black and brown community because I am black you know, growing up. And a lot of, and I have a lot of peers who say the same thing. You would just hear like, oh, your uncle is different. Your cousin is different. You, you know, and nobody put a name to it. And it's not until now, like later on in the, you know, 2020s even that we're like, wait a minute, I think they were autistic.
Or I think they were a ADHD. And so I think societally, there's really this stigma, right? We push for like, my kid has superpowers and my kid [00:06:00] has, right? Because it is almost perceived as an insult to have a disability and to be disabled. You even have some, like well-known disabled individuals. I think of a video the other day and there's a sports journalist, and he had both of, I believe he had both of his knees amputated.
Don't, don't quote me on that, but he does not have legs like beneath the knee. And he w the the NFL players, some of them were getting on the ground and getting down to his level and getting down there to talk to him. And everybody was saying, that's amazing that they did that. And it was so accommodating.
And he was like, yeah, but don't call me a disabled person. And so there's a lot of stigma and things tied around those words and terms. And I think also societally we are more quote unquote outwardly supportive. If we see a physical disability, those indi invisible disability seem a little bit more difficult to contextualize.
And so I think, I know my generation, if you're with me, I'm a millennial, [00:07:00] so I know like you, you know, I grew up and I knew nothing about autism. She knew nothing. And then becoming a mental health professional is how I then learned subsequently about it. And then I learned even more once my son received his diagnosis.
Scotti: I think that's true. I'm, I'm a Gen Xer, so I'm a little bit older, but it was so true for me, thinking back to my own school experience that we just sort of thought like, well, they were quirky or we, you know, there was some judgment, or a lot of judgment about, well, why can they not get themselves together?
Why can they not? You know, there was just like a serious lack of empathy, including from myself because our whole. Systems were built around neurotypical folks and anything outside that was seen as perhaps a a willfulness or a lack of trying hard enough or, you know, you can insert all of those things [00:08:00] that we've all heard a bunch of times.
So for me, it was really my own child's diagnosis. And now being able to learn and I've learned so much that now I can look back and think, oh, oh, I see. Mm-hmm. And I think it for me has lent a tremendous amount of empathy.
Destiny Huff: Yeah, I, I agree. I think that I know with my son, and that's why I always tell parents, like, you, you learn, you grow, right?
So I always give op people opportunity to learn. I tell everyone, we had a stereotyped view of what autism looked like. And so when we talked to the clinical educational psychologist and they were like. What do you think about autism as a mental health professional? I let my husband know they're not gonna say that knowing the stigmas and things attached, if that's not something that they think the testing will subsequently back up.
It was a very stereotyped view of it, and I think what you also speak to is what we see a lot in the educational system when it comes to supporting learners, and [00:09:00] it's not ill intent, right? It's that assumption that they're choosing to do these things and that they can control and they're refusing to, and we leave out, a lot of things leave out dysregulation.
We leave out capacity, we leave out that a lot of neurodiverse individuals have. Sleeping diagnosis because they struggle to sleep, go to sleep or stay asleep, or they wake up multiple times and like, think about that. If you're walking around half the time needing rest. Your window of tolerance is gonna really narrow.
So I think you kind of point to that. What we have to also understand is that those of us that did not grow up around neurodiverse individuals or having that exposure or education subsequently became the adults that are teaching the neurodiverse individuals. And so it becomes upon us to be open, to listen and to learn in order to support them in a different way.
Scotti: Do you find that parents, when they are finding this information about themselves in the process of helping their kids, [00:10:00] how do parents frame that for themselves? Is that a challenge? Is it a relief? How are you seeing that show up for them?
Destiny Huff: I, it's a combination. I see some parents that are, like I was, where I had struggled with my own mental health related to depression and anxiety throughout the years, and getting to the, the many, thankfully, accomplishments that I have today.
And not knowing why the label that was given didn't fit. And so subsequently getting that label was like, oh my gosh. Like, yes. And I think that's where I see some parents where they're just kinda like, it's just such a relief or seeing that they often do a lot of research for themselves as parents.
For their child. Like as a parent, how do I support a child with X diagnoses? And then they subsequently realize, oh, well, if that's available for them, is it an adult availability? Because I struggle with that. [00:11:00] Still not attaching that diagnosis to themselves and then going, oh, there is, and so you see some relief and then you see some that they have a challenge because of what.
Grew up knowing of that, the perception of what that means. Talking to it about with other people, because sometimes I've seen parents that have mentioned they open that door by broaching the topic with their child who has the diagnosis, and then sometimes those support systems that their response will impact how that parent feels about disclosing what they may have also learned about themselves.
So it's, it's a mixture and it really just depends on what they've been exposed to. What they, were they searching that out or was it just kind of, I've had some parents that went to go get their child evaluated and the, the evaluator was like, and you're autistic too? Yes. Like, you know, and the parents like, what?
No. And they're like, oh, okay. And I wanna kinda mention Maria Davis Pierre, who is the autism and black cEO and founder, because she's talked about this openly. And she has a podcast too as well. She [00:12:00] says like, when she went to go get one of her children evaluated, she's a mental health, she's a licensed mental health professional.
And the, they were, the doctor was like, you, you're also autistic. And she was like, mm, no. And so she said she subsequently then did go through all the testing. She was like, no. And it was of course, yes. And she since accepted it and, and supporting herself and, built this whole wonderful organization.
But at first she was like no, if you're saying that you're gonna test me so that I, you know, definitively prove that
Scotti: Well, I'll be sure and include a link to her website. 'cause I think that's a great resource for folks. It'll show up in the show notes. I understand that this would be super challenging for parents.
So how does this. Show up when we go to talk about specifically navigating IEPs in school. Yeah. So it's really all those things that a lot of times we'll see whether our, our neurodiverse orders are high masking or not. You know, all of that dysregulation shutting [00:13:00] down, inability to communicate.
What we're thinking. That's where I really see that show up for Neurodiverse parents when it comes to IEP meetings, IEP meeting inherently is just overwhelming. Right? And I like to say any meeting with the school is overwhelming when you're meeting with more than one person or if there's already been kind of a discussion via emails or verbally when they've come out to you about like some issues or concerns.
There's always this heightened sense of responsibility on the parent of like, it, the, the school, I think always. Sometimes intentionally, but sometimes accidentally portrays like this, we're doing everything we can. What are you doing? Type of mentality, unfortunately. And so a lot of Neurodiverse parents then feel this responsibility to prove and demonstrate how they're supporting their child.
And I don't think that's unique to Neurodiverse parents, but I think with Neurodiverse parents also comes that capacity piece and comes that regulation piece. You know, and comes that executive functioning piece. All things that we are expected to have clicking. When we [00:14:00] step into these meetings, when we're reviewing this documentation, right, we're supposed to remove the emotion and be objective.
But this is our kid and good, bad or indifferent that somebody else saying something about your child and you have to decide if you agree with it or there's issues and then you have to subsequently communicate that to get changes done. So I think it really shows up in our executive functioning. And a lot of people don't recognize that regulation is an executive functioning tool.
So it really just shows up in our executive function. That's the biggest barrier for Neurodiverse parents. When it comes to IEP meetings, I would agree a hundred percent because it is hard for anyone to show up to those meetings and even before you have a meeting to do all of the pieces that. That come with these processes.
You know, you get an email, you have to respond to the email, you have to, you know, formulate your strategy. You have [00:15:00] to follow through with it. You have to, if they don't respond, you have to respond. Again, all of these pieces, and it's like on top of your regular life. Right. Right. 'cause I'm, I don't stop parenting because I like, and I, I say this 'cause I have an IP meeting for my son tomorrow and it's like I, you know, I still am working, I'm still adulting, I'm still attending meetings for my families.
Right. And so, you know, that's where I definitely see it show up. And
Destiny Huff: a lot of times Neurodiverse parents will hire advocates because they're just like. I can't, I just can't get my words out. I can't tell you how many times I've had parents come to me. They do so much research. They've looked into so many things, asked so many questions, like they have got things together about what needs to be supported to their learner, but they just have a difficult time, you know, communicating that in the moment. And that's the piece that I think gets kind of disregarded a lot when it comes to [00:16:00] IEP meetings is that we are expecting everyone to be on in the moment. And a lot of times, based on the, you know, I have my parents send letters ahead of time but. Based on the information, the school team is able to like provide their present levels, right?
And they're able to like discuss and then put that in the document. And then it's, it's really kind of only when the parent comes in there, the parent is like on the spot. Like, what are all your concerns? What are all your issues? What are all the barriers? What do you think needs to be addressed? How do you think we need to fix this?
And that's just automatically nervous system overload for parents.
Scotti: Well, and also because. For many parents, this is not a system that they have awareness about. Absolutely. Right. And it is so easy to feel overwhelmed by the jargon, the, you know, the structure that you're not familiar with.
And I talk to parents a lot about too, about there are different power dynamics at play and not in a negative or positive way, but there just [00:17:00] are because you're coming as a parent. You care very emotionally about your child and teachers and other staff are coming in professional capacity.
That's a mismatch.
Destiny Huff: Mm-hmm. And the amount of people at the table. That's what I think about with the power dynamic. Right. A lot of times it's you know, even let's say your elementary, let's say your, your child is in second grade and they've got just one gen ed teacher and one special education teacher, right?
Then you have to have your local education agency representative there, and a lot of times that's gonna be the administrator. So you've got the gen ed teacher, the special ed teacher, and the principal. Not including if your child has speech or OT or medical needs, right? All that school staff is there, and a lot of times if you're attending in person or even if you're virtually, you might be the only one on the screen and then they're there, right?
You're stepping into all the school staff. Immediately there's a sense of feeling on the outside because there's a sense of assuming and presuming that there's some type of [00:18:00] camaraderie there. There's some type of relationship there, some type of dynamic and you're stepping in there alone. And so, you know, that also can shift the power because it feels like even though it's a team effort in it, I would tell, tell everyone the IEP team, 'cause consists of a school team and a home team.
But even though it's a school, it's a team effort. It feels like school versus parent. And so that automatically can shift. You know, everything might cause your defenses to be up, might cause you to be like on guard. And then subsequently they're on guard as far as like feeling like, you know, we're doing the things.
So if there are issues and concerns, they're like, well that goes on you and the parent is subsequently like, well actually that's on you. Instead of that, you know, collaborative environment. That's something that can come into play at times
Scotti: Right. And it's hard as a parent when you are not in the classroom, you don't have that kind of access to that information.
And if you're [00:19:00] prone to feeling overwhelmed or overstimulated or, and you know, and a lot of these meetings happen at the end of the day where you're also trying to potentially manage your own child's participation.
Destiny Huff: Or the start of the day. I, I've had meetings at seven in the morning and I'm like,
Scotti: that's hard for everyone. Right? That's hard for everyone.
Destiny Huff: And you gotta be on at seven o'clock in the morning.
Scotti: Yeah. So another piece you mentioned earlier that I wanna make sure we touch on is about professionals acknowledging when they're working with Neurodiverse parents and what their needs might be because of that.
Destiny Huff: Mm-hmm. Mm-hmm. Yeah, I know. So one of the things that I think I try and give, so first of all, a lot of parents may find out they're neurodiverse and they may not even disclose that to the school team, and that's, that's completely their right. I [00:20:00] know parents that have felt like because of how they're seeing.
Others opinions on it, that there might be this perception of them not being able to parent their child or take care of their child, or understand, I'm not gonna say those, those thought processes, those thought processes and situations don't exist 'cause they do. But one of the things I try and do for my families is when I come into the meeting, I'm like, hi, I'm Dr. Destiny Huff. I'm late diagnosed adhd, I'm a family advocate, mental health therapist. I open the door that way because one, I want. The staff in the room to know I'm bringing the personal and professional and lived experience to this arena. So subsequently, if you're going to question something I'm saying, you better be able to back it up.
And I think that's necessary because a lot of times the school is being bringing the professional, the parent is bringing the personal. And a lot of our learners regardless of diagnosis, there might be barrier. There might be, you know, just a lot of things that get talked about. So they may not be in the [00:21:00] meeting or parents might feel like they're too young or things like that.
We don't a lot of times have that lived experience in the room from that standpoint. And so I do a lot of shaping of perception. Talking about Ill intent. And so subsequently, when my parents do, you know, express that they're neurodiverse, there always has to be this outward understanding until they need certain accommodations.
And so what I find is that like I have one parent, if they're gonna make any changes to the IEP, they're gonna do it on the screen. She is like, I need to see it be made. And that's two things that comes from trusting previous teams and then when, and saying them agreeing and saying, yep, we'll make that change.
And then we're getting the document changes are made, but also it's that processing, right? And she needs to be able to see it to process the change, to talk, to see what you're walking her through verbally. And so I think that a lot of times. That's where the [00:22:00] hurdle is, is that the schools are, are receptive until there is a need to accommodate the parent.
And then it becomes a situation of, well, because sometimes he's similarly to the learner, which is very ableist is kind of like, what you just need to deal with it. Like this is how it is.
Scotti: So what would you suggest for a parent who just listens to you, describe this and thought I could really use some accommodations in these, in these conversations I'm having at school, either in an IEP setting or otherwise, what might a parent do to help them get those accommodations?
Destiny Huff: I mean, I always request putting it in writing. That's always what, when I draft letters from my families when I talk to families and they're mentioning things like that, put it in writing like, Hey, I need, you know, to participate virtually. I need the meeting recorded so that I can listen back to it later and process the information being said.
I need the information shared on the screen. [00:23:00] I need the information beforehand. I mean, to me that's one of the most easiest accommodations and one that that schools struggle with the most is the parents. Like, I just want the document beforehand to review it while I'm regulated, while I'm in my thinking brain to actually review and be able to give feedback so that we're not in a meeting for three hours.
And a lot of times, instead of just acknowledging, hey, like. We've been super busy, which is usually the case, like we just got this done and so I apologize for getting it to you later, and I understand if we might have to delay the meeting or it has to go a little longer, or like, how would you like to proceed, which is understanding it'll be a, well, we're not required to get what you want, or we're not required to do this or that.
When it's really just that you didn't have it done because you are busy, you do have other students and things. So I think it's, it's that transparency piece. Parents putting it in writing allows you to go back later and say, well, this is why I have to do this. For some of my families, I've, you know, they, I tell them, scapegoat me.
So they'll, [00:24:00] they'll go and say like, we need to reschedule because, you know, our advocate didn't get a chance to review the draft. Like, I, I don't care. Like I, my feelings won't be heard if they feel some type way about that. But. You know, putting it in writing allows you to get it out there to state this is what you're needing, and then to follow up and say, well, now, because a lot of times comes that guilt too, so that follow up allows you to not feel so much guilt about if you do feel like I'm gonna reschedule this, or I'm, I'm gonna, this meeting's gonna be longer, or we are gonna have to do a part two because I didn't get access to this.
Scotti: Yeah. I hear from parents often that they, they worry about being seen as overly demanding or the, the overly squeaky wheel. or, you know, that parent. So what advice might you have, because what you just described might make some people feel like, oh, that's asking a lot. All these people showed up for this meeting.
Destiny Huff: Right. And you know, to me it's asking the bare minimum. [00:25:00] So I think when I, when it comes to that piece, I always tell the parent. You are a part of your child's team. They're educational team, okay? Even if they don't have an IEP or 5 0 4, you're a part of their team. You are expected to follow up and you're expected to reiterate what's happening there.
To know. They often ask us for solutions, even though we're not the quote unquote professionals. They often ask us for strategies even though we're not the quote unquote professionals, right? So we're not needed until it's like we can't figure it out, right? That gives you stock and weight. You are the only, as the parent, you're the only consistent member of their team.
You are the only one who's gonna go with them from pre-K to graduation. And so I think you have to reframe your role and I think that's where a lot of parents, especially when we talk about looking at systems. They look at the school system as they're the professionals. They know what they're talking about, and then especially if you [00:26:00] are neurodiversity group up in a very compliance based system, you think what they say goes, and I think it's very important.
It's very important. That you remind yourself that you are a valuable team member and you remind yourself that it's okay to request accommodations and put that in the same, regardless for your children, right? Because you get to a point eventually where you're like, they need this so that, and I'm just, I'm just gonna have to say it right?
And that's because the system wasn't creative with them in mind. And that's the same way you have to look at it for yourself.
Scotti: Well, and I guess we're, we're running close to time 'cause we could keep talking about this, but I think that's a really great way to sort of wrap up because it's reminding me, and I hope anyone listening, that taking care of our own needs is helping take care of our kids' needs.
Destiny Huff: Mm-hmm. Absolutely.
Scotti: Because we can't meet their needs if we're not also taking care of ourself. [00:27:00] A hundred percent. A hundred percent. So. Tell me if, if there are folks listening who want to know more about the work you do, where can they find you? What kind of support do you provide for parents? Tell us a little more.
Destiny Huff: Yeah, they can find me. Www.destinyhealthconsulting.com. They can find me on Facebook at Destiny Huff Consulting, and they can find me on Instagram on Destiny Huff IEP Advocate. I review IEPs to make sure they're neuro affirming as well as attend IEP meetings for families. And then I also train schools, organizations, and parents on neuro affirming practices to support neuro divergent learners mental health.
Scotti: Is such important work, so I am happy to know that people like you are out there doing this really important work. I think sometimes bringing in someone else can really be the piece because it takes a lot of pressure off. Absolutely. So someone like you who has very specific [00:28:00] IEP advocacy experience, you know, I, I work on coaching parents even before they get to the IEP to really like, figure out what their kids need and help them be their best advocate.
Even when you have those voices telling you or you have these neurodiversity challenges that make showing up more challenging. We are gonna end with how I always ask my guests to mention a resource that you think parents listening to this conversation might also be interested in.
It could be a podcast a book a website, something that if they want even more information, they might find useful.
Destiny Huff: Yeah. So I'm definitely gonna recommend the affirming Village podcast, which is a podcast that I co-host with Lisa Baskin Wright, who is a, also a fellow non-attorney special education advocate educator.
And who has a DHD and dyslexic. And so what we bring to that is that her children are older now. She has an odd HD older daughter who's in college. And my children are [00:29:00] still very much in elementary school navigating special education and public education. And then we're both neurodiverse individuals.
And so we try and combine our. advocacy with her being an educator, me being a mental health therapist and the black and white dynamic of acknowledging the different hurdles and barriers, barriers for different populations. So I think that's always great for anyone, parent educator related, service provider, administrator advocate that is listening.
Scotti: Excellent. And I will for sure include a link to that in the show notes so people can find you. I'm really thrilled that you've launched this podcast, 'cause I do think you're talking about really important things for families and for schools. So thank you for that and it has been such a pleasure to have you with me.
If folks wanna find you as always, I'll include the links to Destiny's website and her social medias in the, in the show notes.
Destiny Huff: Thank you for having me.
Scotti: You are so very welcome.
Thanks for tuning in to Unlocking School [00:30:00] Success. If you're finding these episodes helpful, please hit follow, leave a review, or send it to another parent who's also navigating the school maze because no one should have to figure this out alone. You'll find full show notes@reframeparenting.com slash podcast and you can come say hi on Instagram at Reframe Parenting.
Thanks again for listening. See you next time.
