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Ep 11: 5 Questions to Ask Yourself When Partnering with Your Neurodiverse Child’s School Team

Most of us with neurodiverse children have IEP or 504 plans, and that means your child will have a team working with them at school. The team, your child, and you form an important dynamic when it comes to your child’s education and, from our experience, starting the year off on the right foot makes all the difference.


In today’s episode, we’re continuing with our back to school series and we’re sharing why the school team partnership is so important, and the 5 key questions you should ask yourself in order for this partnership to succeed. We also share some stories that we hope will help you to learn from our mistakes.


A little bit of preparation and strategy will go a long way to having a harmonious (at least as much as possible!) relationship with the staff and administration at your child’s school. Remember that the team might not have all the answers, but you know your child and what’s best for them, and as long as the communication stays open, things will work out.




In this episode, you’ll learn...

  • [01:15] All about our new program, The Communal Closet!

  • [11:27] Why it’s important to partner well with your neurodiverse child’s school teams this year, plus 5 key questions to consider for this partnership

  • [55:14] Our What the What segment, recapping the 5 questions to ask yourself regarding your child’s team at school

  • [56:57] The Last Word




If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.


Links mentioned in this episode…


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Transcript for "Ep 11: Back to School Series: 5 Questions to Ask Yourself When Partnering with Your Neurodiverse Child’s School Team"


Gwen:

If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside humans with neurodiversity, you're in the right place. I'm Gwen.

Kristen:

And I'm Kristen. And together, we have decades of experience parenting fiercely amazing neurodiverse humans, as well as teaching, writing, advocating, and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins.

Gwen:

Welcome to You Don't Want a Hug, Right? We promise to come at you each episode as our true selves, sharing the hilarity and delight in the midst of the heart of our journeys. Most importantly, though, we hope to remind you of your immense value as a human being outside of the parenting role that you play.

Kristen:

So grab a cozy blanket and a beverage and go hide in the closet nearest you.

Gwen.

Gwen:

Kristen.

Kristen:

I think it's time that we tell our friends about what we've been doing because so excited about it.

Gwen:

Oh, the communal closet?

Kristen:

The communal closet.

Gwen:

Okay, guys, so this podcast, we love it so much and we wanted to really get our legs under us before we introduced this concept because, well, first, we wanted to make sure that people liked us.

Kristen:

We wanted to make sure that you were going to want to hang out with us.

Gwen:

And wanted to be in community with us. But we're really seeing that you do. Well, most of you. So we have developed an online community that you can join and start engaging directly with us and with each other. And we really couldn't be more excited about this because as much as we love talking to each other, we see so much of each other that ...

Kristen:

Would be nice to, I don't know, talk to somebody else.

Gwen:

Yeah. We might need to diversify our conversation opportunities. So we really want to add you to our mix. So we have developed a program called The Communal Closet. Kristen, tell them a few of the things that are a part of the communal closet.

Kristen:

Okay. Well, we figured because we so often like to hide in a closet ourselves, maybe we should just build a virtual closet for us all to get in together.

Gwen:

Yes.

Kristen:

But one of the things that you get is a quarterly Zoom call with us. How much fun would that be?

Gwen:

So fun.

Kristen:

So fun. You have access to 24/7 community chats and forums about specific topics. So there'll be one chat that is for episodes where you can really dive in and talk more about what we talked about in a particular episode and then another chat that's just talk about whatever you want, post whatever you want, create a community for yourself.

Gwen:

Yeah. And that can be organized by topics. There's a lot of flexibility in the space for you to create your own space within the space. So we love that aspect of it.

Kristen:

We love that. And there's the ability for you to connect to members that are local to you. So you can have local communities, you can have communities across the world. There's lots of options.

Gwen:

You could even create your own virtual book club within here. This isn't just what Kristen and Gwen say you can do in the space. You can take free reign to do whatever you want within the space, with or without us.

Kristen:

And just with people who get your life. This is the most important thing. We know how important community is. We couldn't do our lives without it and we want to do it with you. So the other thing that you would have access to is the top 10 lists for every episode.

So if you joined our newsletter, you received those first three top 10 lists. We have so much fun putting those together. They're sometimes funny, they're sometimes full of information, but they're always fun. And Gwen makes them look absolutely beautiful. So there's that.

Gwen:

We envision, I don't know, you guys printing them all off and laminating them and putting them in a binder, or they can just live online. You just want to do that. It's fine.

Kristen:

Gwen loves a good binder in case you haven't noticed. You'll also get some extra podcast episodes that might be additional content with our kids and maybe some bloopers and maybe some conversation that happens before and after we record, which sometimes is better than what we've recorded.

Gwen:

Right. But I will say in order to start doing those additional podcasts, the last benefit, which is more of an invisible benefit, is helping us keep the podcast alive because we do not podcast to make money. And the podcast does cost money and it's money that we are confident is worth the investment. But you joining this community, which is $10 a month, is going to help us maintain this podcast moving forward and provide the opportunity for us to create more content. We have an awesome production team that we work with and we couldn't do this without them, but it all does cost money. So all these things you will get as a part of your membership and we know that it will be worth it. We plan on being very engaged in this community and benefiting from it as well.

Kristen:

So go to the communal closet tab that now lives on our website and get on in here.

Welcome, back friends.

Gwen:

Hello, all of our hot tamale listeners. Is that okay that I call them hot tamales?

Kristen:

I don't know.

Gwen:

I don't know. I feel like they're all hot tamales in my mind. All you beautiful people, go with it, I say. Okay, running. We are here in our second episode of the series on all things going back to ...

Kristen:

School.

Gwen:

... school. There's so much to cover here, friends. So we're breaking this out. And whatever order I told you in the last episode we're doing, it's such a lie.

Kristen:

It's not the order.

Gwen:

We've completely changed it. This episode is how to ... Kristen corrected me off air. I think I'm right, how to jive with your school team.

Kristen:

And I think it's jibing.

Gwen:

Jive. How to jive?

Kristen:

Jibing. Jibing is like ... Okay, jibing is making insulting or mocking remarks.

Gwen:

Jibing.

Kristen:

Jibing.

Gwen:

Oh, well then, I am correct.

Kristen:

Jiving is to perform the jive or a similar dance to popular music. So we're both wrong.

Gwen:

Okay. How to dance appropriately with your school team. I think that works beautifully.

Kristen:

Or mock and insult them if you were to jive.

Gwen:

Or insult them. I mean, we could also tell you how to do that. We have done both. We don't recommend that.

Kristen:

Yeah.

Gwen:

The latter. It's not productive for your child. Although it might feel necessary from time to time, we don't recommend it.

Kristen:

It also might feel great, but we don't recommend it.

Gwen:

No, we don't. So let's just stick with the jive dance scenario. So we're here today to talk to you about lessons we've learned through stories of how we have interacted and partnered and then maybe not done that so well with school teams for our kids. But before we do that, I would love to hear what Graham has to say in life lately. So please share with me a Grahamism.

Kristen:

Deep thoughts by Graham. Recently, we're along the lines of, why do they call a blended drink a milkshake? Why not a milk shook? Am I right?

Gwen:

Why?

Kristen:

Because it's already blended. It's in the past tense.

Gwen:

Okay, milk shook.

Kristen:

I think I'm going to order that next time. Well, I won't because I'm dairy free, but I think I'll try that out and see what kind of response I get from the unsuspecting teenager in the order window.

Gwen:

Thank you, Graham.

Kristen:

My guess would be just a blank look.

Gwen:

Milk shook. Milk shook. But that's being literal, right?

Kristen:

Yes, that's being literal. And this is what he spends his time thinking about when he is just staring out the window. Deep thoughts by Graham.

Gwen:

I appreciate that. So my Rylandism is a back to school oriented one. We are so proud of this kid. He is going from his high school to a different facility every day because he's doing this vocational training program and we should talk more about that in the other episode. But he's doing precision machinery, which we're hoping could be a career path for him someday.

So when he takes the bus over, he had to figure out what time, where the bus picks up. This new facility he's going to is a complex with multiple buildings. So he knew the building he was supposed to go to. Well, the first day was a disaster, but he navigated it and figured it out and didn't have a meltdown. We were so proud of him. He said he was sweating a lot, but he did wear his deodorant. So it was okay. So the second day, the bus drivers figuring this out and stops at the building where Ryland's supposed to go, but he said, "All right, this is where all the" ... And there's all these abbreviations. Well, he said the abbreviation for a different group of students, get off here, it was his building, but he wasn't that abbreviation of student. And so he just didn't get off the bus because he wasn't called.

Kristen:

Darn.

Gwen:

So he ended up at the wrong building. He goes, "So I had to walk across the wool parking lot through this other building to get to my building." I hope he calls it for me tomorrow.

Kristen:

Because he'll sit on the bus again, unless he calls it.

Gwen:

[inaudible 00:10:50].

Kristen:

Love it. I love it. I love the literal nature of our kids.

Gwen:

Nature. So I was like, "Gwen, you have to spell this out for him. Honey, if it's your building, you get off. He's like, "Well, will I get in trouble since I'm not that ... No, no, you won't." So I do laugh, but I also cry in the real world, what is this going to mean? So we're taking baby steps, but I'm hoping today he gets off the damn bus at the building he's supposed to go to.

Kristen:

Okay, you're going to have to tell us next time.

Gwen:

Okay, I will. All right. This episode, we're taking a different approach. So Kristen and I came up with five questions to ask yourself as you consider working with your child or children's school teams this year because this is a very important dynamic for a majority of us who have IEPs or 504s or if you're looking into getting those plans, you will have a team, which can be a wonderful thing if you deal with it strategically.

Kristen:

Yeah, it really is a relationship that could make or break the experience. And so we can't stress enough how important it is to consider these questions when you're trying to build rapport with your team. If you have good rapport, so many things can happen that won't happen if this relationship isn't working well.

Gwen:

Right. And remembering that it's on behalf of your child. And so putting aside personal feelings can be really important. So the first question that we would encourage you to ask yourself is, as I consider this school year, what is happening inside of my own body? When you think about leading into whatever's going to come, what happens in your body? Where do you feel movement in your body? Where are you feeling angst and anxiety in your body? For example, when Ryland was younger, I would have a lot of tension in my stomach. I would have ... And a very irritated stomach. My heart would be racing a lot.

So if I broke that down, the images that would come up in relation to that tension, which is a secondary question, what are you seeing as you think about what you're experiencing in your body? So my tension in those days had I had the insight to ask myself these questions, which I did not, would've been, I'm very anxious about getting emails from teachers and the team because I had negative experience with just novels of emails that would come daily about Ryland or lunchroom behavior because I get so much feedback on how he was in the lunchroom. So great, naming those things is a great place to start.

Kristen, do you have any insight into maybe what would've been happening in your body during those elementary years?

Kristen:

Yeah, I think I would have a lot of tightness in my chest. I would not be sleeping well and I would be having lots of imaginary conversations in my head all night long that were not going well. So, really, I would ruminate a lot on things not going well, bringing up past traumas or past difficult experiences that my kids may have had with their teams or during their day. So, yeah, I definitely felt it in my body and I was also not very aware in those early years of how then I was taking that tension and anxiety out of my body and into my experiences with my kids in the morning.

Gwen:

Yeah, absolutely. Because we don't have the capacity to really think through that. It's more of a survival mode that I feel like I was in then. I am figuring this out as I go and I didn't have time to even consider what it was doing to me or what I was bringing into the equation when really a majority of it had to do with what I was bringing into the equation.

Kristen:

Yeah, probably 80%. And it really impacts then the way the team's going to work with you and work with your child. So it really is important for you to be taking some inventory of yourself and where you're coming from, what you're bringing, what kinds of feelings, what kinds of past experiences, what kinds of baggage you're bringing to the table.

Gwen:

Yeah. I mean, write it down, journal these things. Even if you're not a journaler, just write it down because it's really helpful, especially if you can keep that from year to year to be able to track. And do that throughout the year. What am I feeling in my body this week? Because we all know that our kids and their needs continue to evolve through the year and new things pop up and new challenges pop up and other things become easier. And so tracking what's happening internally is our first suggestion and something that I wish somebody would've told me to do because now that I know how to do it, my kids really don't need me to do that anymore. So they didn't benefit from my ability to manage my own self, which makes me sad.

Kristen:

It makes me sad, too, because we think that we don't have time for ourselves, that we have to put all of our attention and focus on our kids, but when we do that, we become blind to how we're impacting the situation because we're not handling our own anxiety. We're externalizing it, putting it on the team, putting it on our kids, putting it on so many other things and we are really the only ones that could control that. So thinking more about where you're at is going to benefit your kid in the long run and in the short run.

Gwen:

For sure. And becoming more proactive rather than reactive, I think, is where this starts to be really helpful. Because if we're just being reactive, which I feel like I was for a majority of his school career, it's just constant anxiety and stress.

Kristen:

Yeah. And I think when you're in touch with where you're at ... And we'll do a whole conversation around grief and disability and labeling and experiences that your kids are having in these environments that aren't built for them and how that really impacts your ability to communicate, depending on what phase of coping you're in or phase of grief you're in, whichever word hits better for you. If you're feeling particularly down, for instance, we like to call it an autism in your face kind of day or an autism is kicking my ass kind of day, then you may not want to discuss the results of an assessment or you may not want to engage in a conversation about a particular behavior that your child is struggling with because you're going to cry your eyes out. And so I think of it to myself as a check yourself before you wreck yourself scenario because I've wrecked myself and others many times when I'm not in a good place and I don't recognize it.

Gwen:

Yeah. And that's just wrecking your kid's ability to succeed.

Kristen:

Right.

Gwen:

So question two then is, now that we know this tension exists and where it exists and we can name it, we'll narrow in on how you, outside of your role of being a parent, can begin your days to address what you already know is looming.

So what are practices you can do to begin your days that will set your mind and your heart in a place of more calm and confidence? This is very personalized based on who you are and what works for you. But I have done quotes that speak into what I know I need on my mirror in the morning. Maybe it's a new one every day, because if you're checking yourself every day, you are aware of what you need. Maybe it's a dry erase board in your kitchen that you can look at, I don't know, 8,030 times a day or in the morning as you're getting ready. Meditation has helped me. Words of affirmation in a journal, creating mental images in your mind that you know will calm you and remind you. I think for me, the reminder that there is a larger picture other than these micro situations that feel macro but are when you consider the bigger picture of your life and your child's life, these are micro situations that they're dealing with day to day at school in the third grade.

Kristen:

Right.

Gwen:

I don't remember them now. My child's macro vision for his future is not dependent on those micro situations that I put so much energy into and caused myself to have irritable bowel syndrome, for example.

Kristen:

For sure.

Gwen:

What would you like to add to that list of suggestions?

Kristen:

I would add moving your body if possible. Now, I'm not one for moving my body super early in the morning or at any time really, but especially super early in the morning. But some of you out there may be morning movers. So I think that can really ground yourself in your body and clear your mind. Something that worked for me a lot was to actually set my alarm to get up an hour before I woke my kids up and I would have coffee in bed with my dog and read or scroll social media, whatever it is, do a little meditation, finding that calm space and then completely get ready myself before I even woke the kids up. That really helped me a ton. We also didn't have the news on in the kitchen.

We played music in the morning and took requests from the kids, which often meant we were listening to Queen a lot.

Gwen:

Ooh, solid choice.

Kristen:

Yeah, which was very solid choice.

Gwen:

Fantastic rock.

Kristen:

Yeah. And then maybe a little bit of Johnny Cash, another fave. I think my kids are old souls or something, I don't know. But ...

Gwen:

For sure.

Kristen:

... we had a lot of fun music in the morning and that seemed to really help. I also ... Because we have triplets, getting them out the door in the morning has always been really, really challenging.

Gwen:

Why?

Kristen:

And ... Yeah, I know, it's really hard to imagine why teaching three kids to tie their shoes and teaching three kids to, yeah, whatever.

Gwen:

You did laces?

Kristen:

Not until they were like 12.

Gwen:

Oh, I don't know that we still do laces and he's 16.

Kristen:

Yeah. So I think having a positive attitude and having compassion and kindness for your kids in the morning. I always used to tell them to be kind and brave every time they get out of the car, they still tell me that they remember that.

I was like, "Literally, those are the only two things you need to worry about today. Everything else is negotiable. Those two things, you've got to practice." And so really simplifying, finding my kindness and compassion, and by doing that for myself first before I even got them up, way more successful than trying to do it all at once.

Gwen:

Yeah, I love those. I have been trying to move my body the last couple of weeks and it is making a dramatic change to my days. I'm getting up with my kids at 6:30, having my coffee while they get ready, and then I head out the door when they do to the bus and walk, and I feel better than I have in years.

Kristen:

Yeah.

Gwen:

But I couldn't have done that. There are certain stages of their life where you just can't do that. So we do understand these are not universally acceptable ideas for you all, but you have to set yourself up for success, guys, if your mornings are going to go well. And since we're talking about mornings, if somebody would've told me to just do all the shit for my kid because he didn't have to learn how to tie his shoes in third grade, he knows how to tie his shoes now, guys, he's 16. Guess what? If I would've just done it for him, it would've saved ... I can't even tell you how many ulcers if I just would've done it. These are not the times with our kids to teach lessons. Just do what you need to do for them to get them out the door.

Kristen:

Yeah.

Gwen:

Save all the lessons and the learning to times where you have free space to do that because the mornings make or break their days.

Kristen:

Yeah, they really do.

Gwen:

Their amount of anxiety that they walk into with school is not worth the struggle at home. So just get down on their level and tie their shoes. I don't know, put on their socks for them. Whatever, whatever you need to do. Don't make them wear socks. Let them wear one sock. Whatever it is. Please don't stress about all these things. If they don't have a good breakfast, they're going to be okay.

Kristen:

Yeah.

Gwen:

I promise. They're going to be okay.

Kristen:

They will survive.

Gwen:

So don't stress the mornings.

All right, number three. This is a big one because this is framing your child's experience with their team. So number three we recommend asking is, who is my child at his, her, their core? Think about that for a minute. Who are they? Write all the good stuff down, know it, memorize it, recite it, be able to say it back. This is the child you'll introduce to your team. This is who will you be referring to in IEP meetings. This is who you will think of when all the phone calls and emails come and you're feeling stress and anxiety. Write all the good stuff down and make sure that that is the child that you are all referring to in that upcoming year. So I wouldn't have known to do that because I didn't understand that developing an IAP was going to be focusing on his deficits.

So then I started framing him as his deficits when it came to school. That is just how the system is set up to handle things. And when you're new to this, you just sit there with your eyes wide listening, nodding, and saying, "You're right, that is really hard for him." So walk in there and frame it in a positive light right out of the bat. So, for example, if I would've known to do this, I would've walked into the first meeting and handed them a sheet of paper. Laminated, of course.

Kristen:

Of course.

Gwen:

You don't even have to ask. Of course, it was laminated. That said, graphically and really pretty with pictures, Ryland is imaginative, nearly always joyful, intelligent, a lover of all humans and animals, a maker of lots of noises. That's how I would frame his Tourette's, literal, remarkably focused on things that are of interest to him. See what I did there. A verbal narrator of all of his thoughts as he's thinking them. Sensory avoidance, unless he needs input and then will squeeze what and whoever is near him. He requires extra patience, understanding and creativity from the people around him to find success in the ways the outside world expects him to. That's what I would've said.

Kristen:

I love that.

Gwen:

What would you say about Graham?

Kristen:

I would've said Graham is very outgoing and friendly. He's really polite. He cares a lot about other people and about their experience and if they're okay. He has come in contact with a lot of rejection, so he might isolate. He needs his team to help him make connections. He has a lot of anxiety from the sensory experience of a school building. And group work is never going to be his thing. It's super hard and you need to make roles very explicit in a group, otherwise, he's not just going to pick it up naturally.

He's very smart, but he struggles to have the stamina to do the volume of work that his peers are doing, but he can do the level of work that his peers are doing.

Gwen:

Ooh, I love that.

Kristen:

Yeah. So I think those are things that I would've said had I thought to think of it this way. And I also want to put out for our listeners the idea, if this has not come across your brain yet, that disability is environmental. All of us can look like we have a disability. If I was in a room full of engineers and somebody asked me to build something, I would have an extreme deficit. So when we are asking our kids to operate in an environment not set up with them in mind, everything feels like a barrier for the way their brain works and what they need in order to be successful, then a lot of the disability, the "disability" they're experiencing can be accommodated or modified so that it doesn't look so much like a disability.

Gwen:

That is such a brilliant way to open a meeting.

Kristen:

Yeah.

Gwen:

It's a total reframe. And we have to realize our teams are wonderful human beings whose intentions, 90% of the time, are really great. They're also overwhelmed, overworked, and under-resourced most the time. And underpaid. And they have their own stresses, anxieties that are personal to them that have nothing to do with our kids.

Kristen:

Right.

Gwen:

So they're walking into work with the same stresses and feelings in their bodies that we have and then have to deal with our kids. And our kids require some pretty high-level patience in the settings that they're in.

Kristen:

And they've experienced lots of trauma themselves with families who have approached them in a not-so-productive, positive way. They have a lot of experiences, especially during COVID and post-COVID. I can tell you as an administrator in a school building, I can't even believe the way some families approach talking to their team or talking to their school administration. It's just like that level of kindness and assumption that people's intentions are good seems to have gone out the window.

And so our special ed teams are experiencing that from other families and don't know what to expect from you, especially if things feel unpredictable for them. So keep that in mind when you're working with a team that seems like they might be a little bit nervous to make a suggestion or do something different. We're going to talk about this a little bit more, but if you've spent the time to build that rapport with your team, they're going to be willing to be creative and think outside the box because they're not going to be afraid to make a mistake or fail because we need to make space for our teams to make mistakes and fail. If we don't, they're going to get formal on us. They're going to resort to the things that they know they can stand behind. And then you've lost the ability for them to look at your child individually and be creative. So it really matters for you to build trust so that they know that you're not going to come at them if things don't go well.

Gwen:

Yeah. And the importance of walking in and framing or reframing the whole experience of disability, like Kristen just so beautifully explained, could really set the stage to then have that conversation about who your child is. And seriously, guys, type it out with a picture of your kid and give it to all your team members and to your teachers. I did have a document that I would give his teachers every year and I would update it and it talked about what's really easy for him, what's really challenging for him. I would put some funny quotes on there so they would get a gauge of like this is what can come out of this child. If you're not hearing these things from him, he's not being fed in the way that he might need to be in order to produce this kind of result. So that was an incredibly helpful document. I actually learned to do that through being a fellow at JFK. That was one of the things we did. So I highly recommend, I can post that to our show notes, an example of one of those documents, but telling your team who your child is, is going to be huge.

Kristen:

Absolutely. Absolutely.

Gwen:

All right. Our fourth question. So we touched on our specific tensions for the school year, personally. So if mine were emails or calls from school and lunchroom behavior, how can you think creatively to soften those pain points is this question. So really pull up, what is it specifically that you're nervous about? Maybe pick a couple things to start because that can get really overwhelming if you're nervous about 87 things, which we understand if you are. Pick a couple and start to think really creatively about how to handle those things. So as we meet and start conversations with the team, for example, if I would've done this, I would've entered and said, "In the past, I had a teacher who would send me literally four-page emails daily about all the things he did wrong." Okay, that is so unproductive and inappropriate. Was this teacher well intentioned? Yes. Did we eventually learn how to see eye to eye through the years of him being at school and then my daughter having her later? We did. She was an excellent teacher for my daughter. She was not an excellent teacher for my son. She's still a great person.

I would've said to her, "I can't have you email me anymore," and just cut it out right away. And it's okay to do those things if you're doing it respectfully. I had to bring the principal in and have her mandate that there are no more emails, but it didn't have to get to that point.

Kristen:

Right.

Gwen:

So then that teacher then had to only communicate with the principal who would then communicate with me. She started filtering things, but it shouldn't have to get to that point. So if you walk in and say, "I really prefer a phone call every couple weeks where you can let me know how things are going and then find out what their preferences are, talk to your administrators."

Our administrator was amazing and would call every parent in the school at least once or twice a year with great news. And she held to that and I sat on the interview committee for that woman and she said that in her interview. And I swear to you, that is the answer that caused the entire interview committee to hire her because it feels so easy when she said it, but it is just not common practice.

Kristen:

No, I don't think most parents of kids that are neurodiverse know the principal of their building well. And I think knowing and understanding where your principal's coming from and what their philosophies on the special education practices in their building can make a huge difference. And, conversely, from your experience where you were being overcommunicated with, I think a lot of families that I have worked with have experienced that lack of communication.

So not knowing that their kids are engaging in behaviors and then finding out in a meeting for the first time with a whole team that your child's engaging in some behaviors that are very problematic feels terrible. So-

Gwen:

Blind sighting.

Kristen:

Right. So I think the point that we're trying to make is if you can set up and communicate with your team when you first meet them, what is the best way? What are we looking for from each other in terms of communication? Is it a back-and-forth checking off things on a list in the backpack every day? Is it a once-a-week phone call? Is it a once-a-month call? Is it a daily quick text? It just really depends on the teacher and on the special ed team and yourself. But having those conversations is going to be huge. The other piece of communication that I think is vital is coming up with some group norms with the team on how you're going to talk about things.

I know that a trigger for me is when I would get a phone call or see an email that said that one of my children was being aggressive, or being lazy, or noncompliant. These are things that tell me that there's been a judgment placed on the behavior when I don't even understand the context of what happened. So you are deciding and telling me that my child intended to hurt another child. That's hard for me to hear when in reality their physical behavior was related to them having anxiety, or trying to escape an activity, or having denied access to something. There could be a function to that behavior that is not really taken into account when you just say they've been aggressive or-

Gwen:

Or noticed a lot of times.

Kristen:

Right.

Gwen:

Sometimes we need to be able to be the ones that said ... I had a call in kindergarten, and this is before I really had a scope of what we were working with with Ryland. And they said, "Well, he just will not listen. And he keeps screaming." And I said, "Hold on, can you have him go to the bathroom a minute?" And they were like, "What?" I said, "No, I'm serious. Make him go to the bathroom." He went to the bathroom, he came out singing and they go, "Oh, he seems to be fine now." So it's as simple as sometimes they just need that parent input into, "Well, okay, he's acting that way. Did a bell just ring?"

Kristen:

Right.

Gwen:

Because school bells are the most obnoxious noise on the planet and our kids have to listen to them how many times a day.

Kristen:

Right.

Gwen:

Or he was terrified of the bell. So, of course, he's covering his ears and jumping up and down. He knows the bell's going to ring. So sometimes they have 28 kids and they need us to highlight the causes behind some of the "behaviors".

Kristen:

Right. Or they're seeing noncompliance when actually your kid just missed all of the direction because they were given verbally and he cannot take in direction that way. And you would need to have a visual task organizer on the desk with it broken down into, "This is how you actually do the thing I just asked you to do verbally."

Gwen:

Right.

Kristen:

And so it looks like noncompliance when actually it was, "I didn't understand the directions."

Gwen:

Yeah. I mean, one-step directions are still what we need to do. But according to pediatricians, they should be able to handle three-step directions by the time they're four.

Kristen:

Right. Not happening for our kids with executive functioning challenges. Yeah.

Gwen:

No. So really how to frame those check-ins is going to be huge as you set up that communication. And they're going to appreciate that in the long run, too, because they want success with you as much as you want it with them. They want allies. And I always thought I was overcommunicating, but I can't tell you how many times I was told, "Thank you so much for all of the insight. This is tremendously valuable to us." And it's just setting your kid up for even more success, the more that you communicate. I mean, they don't want daily emails from you about all the things that your kid needs. I mean, chill out at the same time.

Kristen:

Right. Yeah, it can be a tricky balance to know how much to communicate and I think over time you tend to work it out. But the other piece of advice I would give is ... Especially in secondary schools, so if you're in middle school and high school and your kid has a number of different teachers and some of whom are on board with the IEP and others that may have a little resistance.

Gwen:

Have never read it?

Kristen:

Have never read it, have a little resistance, have a little problem with a particular accommodation that they don't agree with.

And I have found a lot of success in not reaching out to those teachers directly because times three, however many teachers that is for us, that was just an enormous amount of people. And-

Gwen:

Like 27.

Kristen:

It's something ridiculous. And our kids didn't like to be in the same classes. So often, they weren't ... It didn't have the same teacher for a subject.

Gwen:

Great, great, great, great.

Kristen:

Yeah, thanks so much for that. But having the special ed teacher or the person on the team that really is your primary contact that you can really talk to, maybe it's the speech pathologist, maybe it's the OT, whoever you really connect with that can communicate with all of those teachers in a way that feels less stressful for the teacher and less combative because it's coming from inside the building before you start getting involved. And then your teammate might come to you and say, "I've done as much as I can. You're going to need to talk to the principal," or "You're going to need to come in now because they're not listening to me." So that's how you tag team internally with your team and knowing who the person is that you can do that with on the team is going to be vital.

Gwen:

Yeah. And don't assume it has to be the case manager.

Kristen:

Right.

Gwen:

I have found much more success with the speech pass when he was in elementary school than I did with his case manager. And that can be tricky. That can be offensive to the case manager. I just had to say, "Oh, well, I'll still be kind to the case manager," but if we're going to get stuff done, I need to be able to communicate with somebody who really does understand him well.

Kristen:

Yeah.

Gwen:

So that's okay. And I think another thing that would've been really helpful for me to keep in mind is setting up the expectation in those, how we talk about framing those conversations, to please don't ever lead with. There's certain phrases that have really caused me trauma. I've never seen this type of behavior before. I've never had a child like Ryland before. Let them know that those are things that you don't ever want to hear. Or maybe, can you please lead with? I'm struggling to find a way to help Ryland be able to walk around the room instead of, he won't stop walking around the room. And he keeps coming up and tapping me on the shoulder as I'm teaching to tell me about this cool thing his chicken did last night. I'm like, "Of course, he did."

Kristen:

Right.

Gwen:

Do you expect him to not do that? What would stop him from doing that? What are you doing to allow him to share his chicken story? So they were very surprised by that. I wasn't, but I would've loved to hear, I'm struggling with a way to help him versus he won't stop. I got that his whole career. And it just keeps adding to that negative story that we have about our kids.

Kristen:

It does. It's like death by a thousand cuts and it must feel like that to our kids as well. A lot of times ... I'm working with a school team right now that is struggling with compliance as an issue. A lot of teachers are really getting stuck in power struggles with our neurodiverse students because they're not following what everybody else is doing at the exact same time. And if that's going to be your expectation of this kid, it's never going to work out well because compliance is not our kid's goal, right?

Gwen:

Yeah.

Kristen:

And when your compliance gets down to stop making that noise with that pen and, no, you cannot fill up your water bottle right now, now you're adding another drop, another drop, another drop into the bucket of this kid being redirected their entire existence. And sooner or later, then you have a meltdown on your hands and you have to ask yourself, "How did I add to that bucket so that it's spilled over?" And compliance is a place where a lot of teachers struggle to let go of how important is it that I make this kid do this thing.

Gwen:

Yeah. And you can't have the same rules for 28 kids. You can't. And I understand how tricky and nuanced that is for a classroom teacher. I do. But if you have kids who you know aren't going to fit the mold, no kid should have to. But, unfortunately, in our education system, they just do. You need to make sure that you're pointing out, these are the areas that are not going to fit the mold. Based on what I see in your classroom, these are things that my child will need. So when we would enter a grade, I would go into the classroom and say, "Okay, he needs a designated spot that is taped off with blue tape. I'll bring you the tape that he's allowed to pace in and make his noises." It worked beautifully. They would've never thought to do that. I needed to provide that insight. So that was Ryland's roaming area. Ryland, if you're out of your seat, you need to be in your safe space. And a stuck in his foot went over that line, he understood you are out of Ryland's space. And it was always in the back of the classroom so that he wasn't tapping around the shoulder.

Kristen:

Right.

Gwen:

And he was given a notebook where he could write down all the amazing things about his chickens that he wanted to tell his teacher. So they're easy strategies. It just takes a lot of creative thinking and a lot of close team working. Is that a word, team working?

Kristen:

Sure. Now, it is.

Gwen:

I think it should be. Yeah. Team working to make it work. Jiving.

Kristen:

Jibing, jiving. Doing the hand jive. I don't know.

Gwen:

Maybe we should just have a dance party with our teams.

Kristen:

Maybe.

Gwen:

I think that it could actually do wonders.

All right, we have our fifth and final question. Look at us making so much progress. Before your first meeting, take time to consider your team. So here are some micro questions you can ask yourself. How long have each of these teachers been at this? Because that's going to give you at least a gauge on like Ryland's case manager, it was her second year teaching, she was a baby. I should have at least had that knowledge going in so that I could have realistic expectations for what she's even experienced.

Kristen:

Right.

Gwen:

What do you know about them? Their likes, dislikes, hobbies, family makeups. Personalizing each member is going to soften you and allow for more connection with them outside of just what they're doing for your child. And then, conversely, what do you want them to know about you? Share with them. Be vulnerable with them. Let them know what is easy for you, what is difficult for you, what you're nervous about, what you're excited about, share this stuff. And the beginning of meetings is such a great time to do that. I would always share hilarious stories about Ryland at the beginning of my meetings because everybody would be cracking up and that's the child we go into the meeting talking about them.

Kristen:

Right.

Gwen:

Of course, I would send ... Kristen, I'm sure you did this, too, with all of your kids. I would send a Pinterest sheet about what their favorite things are. Yeah. Would you-

Kristen:

Yes. So did not do that.

Gwen:

Oh.

Kristen:

Yeah.

Gwen:

Okay. Well, some of us try harder than others, but I would sell that on the first day and then I would shower them with random things that I knew that they liked throughout the year, whenever I felt like things might be a little tense. And that did good. It did good for our relationship. I mean, it's okay that you didn't do that.

Kristen:

Thanks, I appreciate that.

Gwen:

[inaudible 00:49:09] it's okay. All right. What was the third one? What will be helpful for them to know about your family? If there's some family dynamics happening, you need to let your team know that. Are you separated? Are you going through a divorce? Has there been a death in the family? Is your dog sick? Those dynamics are going to impact our kids and they might not know how to verbalize those things. So sharing those things.

Kristen:

Also, please, please, please do share if there are medication changes with your team. It's so hugely important. I can't tell you the amount of times teachers have been like, "Oh, I didn't realize he wasn't on that major medication for the past week." It would've been really great to hear that. We've been racking our brains to understand why this behavior is happening.

Gwen:

Yeah. Yep, yep, yep. We did have a teacher once tell us we should medicate him. And that's a real warning sign. So don't let that shit happen.

Last. We talked about this already so we won't highlight it again in detail, but assume positive intentions right out of the gate. You just have to assume that they're in it for the right reasons and then ask them to do the same for you. Let them know if you're crazy in a crazy place in life. I, every year, would gift his primary teacher with a dammit doll. Have you ever seen dammit dolls?

Kristen:

I have seen them.

Gwen:

With a little card that said, "You will want to use this throughout the year, both because of my son and because of me. And I apologize in advance, but I promise that you will need it. And so don't tell me that I didn't give this to you." And I think that went a long way.

Kristen:

I'll tell you a funny story of me not letting a team know what was going on for me and what that ended up looking like for them. God bless them. But when the kids were eight or nine, we decided we needed to tell Graham he had autism. And this might be a funny-sounding thing for people who haven't had this experience, but it's really different for each kid when you end up disclosing some of these labels to them. And I was having a really hard time with it. I was in a grief spiral around it. I was talking to all of my psychologist friends, I was reading books, I was trying to figure out how to do this in a way that kept his dignity and helped him see himself clearly, but not in a negative light, blah, blah, blah. So while I'm going through this, the team had sent me an IEP home in the backpack in Graham's backpack and it just said, "Hey, we need to change some hours for the SLP in the IEP because they're going part time, so we're going to have to change some of these direct hours to indirect."

And I was like, "Are you kidding me?" We need to have an IEP team meeting. You don't make decisions like this without a meeting. I mean, where's your data? Are you just making a decision because they went part time or does he not need the help? Anyway. I went nuts and I had known this team for five years, so there was not a reason why I couldn't just have this conversation instead. I was like, "We're having an IEP team meeting. I might bring an advocate. I need to see data." The team was freaking out. Of course, they put together a whole PowerPoint and the principal came and it was like a big-

Gwen:

Because ... Hold on. As soon as you say that, they have to form the meeting.

Kristen:

Of course.

Gwen:

If you don't know that, it is the legal right. Once you state that, they're like, "Well, crap, now we have to have this meeting." And if you bring an advocate, they get the district involved. So there's some real consequences to the words that Kristen offered.

Kristen:

Yeah, I brought it. I brought it. So I get there, everybody's feeling formal, and somebody asks me at the beginning of the meeting, "How are you doing? How doing right now?" And I just immediately started to cry. And-

Gwen:

How beautiful that they asked you that.

Kristen:

I know. And, yeah, it was very vulnerable of them because I was combative. And so I started to cry and I told them how I needed to tell Grammy had autism. I wasn't sure how to do it. They were so supportive, very kind, and compassionate, offered to be the ones to tell his classmates so that it made it easier at school, made some recommendations. And so 40 minutes go by and now we're laughing and we're crying. Everything's great. And I start packing up my stuff.

Gwen:

You haven't even had the meeting.

Kristen:

And they're like, "Do you want to see the data?" And I was like, "Oh, no, it's fine." And so I signed [inaudible 00:54:00] ... You know they went to the bar immediately upon my departure. And that was all about me not checking in with where I was, understanding what was happening in my own body and in my own mind, and really just not being aware.

Gwen:

And forgetting that you trusted his team.

Kristen:

100% trusted them.

Gwen:

Yeah.

Kristen:

Absolutely trusted them.

Gwen:

Yeah.

Kristen:

I mean, granted, they still shouldn't have put an IEP in his backpack for me to sign without having a conversation first. However, my overreaction-

Gwen:

That happens all the time.

Kristen:

All the time. But my overreaction was really about what was happening for me.

Gwen:

Of course. Most of the time, it is. Things that have just not been addressed, felt, or processed.

Kristen:

So, once again, check yourself before you wreck yourself, friends.

Gwen:

I think we can end right there.

Kristen:

Yeah.

Gwen:

Check yourself before you wreck yourselves.

Kristen:

Yourselves.

Gwen:

Your hot tamale selves.

Kristen:

And maybe don't jive or jibe, I don't know.

Gwen:

Okay, guys, thanks for listening.

Here's the what the what, what are our whats for this episode.

Kristen:

What did those ladies just talk about? I don't even remember because there were too many words.

Gwen:

We'll summarize it for you here.

Kristen:

We're going to summarize. We're just going to summarize those questions really quickly for you.

So number one, as I consider the school year, what's happening inside my body and where am I feeling this pain point? Pay attention. Do things for yourself that are helpful.

Gwen:

Number two, knowing these tensions already exist, let's narrow in on how you, outside of your role of parent, can begin your days addressing what you know is looming. What are some practices you can do to begin your days that will set your mind and heart in a place of calm and confidence?

Kristen:

Number three, who is my child at his, her, or their core? Write it all down, know it, memorize it, recite it. This is who you want to introduce to your team and this is where you always want to start from when you're talking about your child that sets up the positive approach and a strengths-based approach.

Gwen:

Number four, earlier, we touched on specific tensions for the school year. How can we think creatively to soften some of those pain points right out of the gate?

Kristen:

And number five, before your first meeting with your team at school, take some time to consider who they are, where they're coming from, who they are as a human being outside of this team, and then assume positive intentions out of the gate.

Gwen:

We're going to hand it over to our kids, guys. Bye.

Reagan:

We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real experts. Their kids. We believe in nothing about us without us. So here it is. The last word.

Kristen:

Jameson, you just gave a really good example of something a professor did for you last semester with a big paper that was due. Tell us quickly why it was so successful for you. What happened?

Jameson:

Yeah, no problem. Specifically, I don't know if it was because it was specifically my first big research college-level paper or anything. But, I mean, she did it for everyone, so I don't know. But what she did was instead of being like, "Okay, for the final end of the semester, you're going to have to write this huge fucking paper that has all of this shit that you're going to have to deal with alongside of all the other finals you have to take," and I was taking at the time, eight more classes including that. But what she did was she ended up being like, "Okay, by the middle of the semester in March, I need you to have a thesis statement and argument made for your paper, and I need you to turn it in, and I'm going to give you feedback on that and such." And you have this amount of time to get that thesis as your staple point and such for the rest of your paper and building up on that. And the only thing that you have to worry about in the end and during finals, while I'm having to cram everything I learned from the past year into one little paper, is that I only have to worry about revising and submitting the final draft. I really like how my professor did that, especially considering it was my first college-level research paper.

Kristen:

So she broke it down into discreet tasks instead of expecting you to hold the whole big concept. I think that can be really hard for some autistic individuals who struggle to see the bigger picture and focus better on the details. So I think that's a great way to break down a bigger project and give it not just a couple of weeks, but a couple of months where you're really spreading it out so that maybe you're retaining information better.

Jameson:

Yeah, because in the setting, in my high school setting and such, when I had a specific issue with one part of the essay, it was not like this tiny little thing amongst this entire list of things that I had to get done for the essay. I felt like with the more concentrated parts of the assignment, I was able to go more in depth about, oh, what I need help with because that's what we were focusing on instead of the entire essay and being like, "Okay, yeah, I'm struggling with this, but I have to fucking get this done and shit."

Kristen:

Right. So you were able to recognize, "Ooh, actually, citations are really hard for me," or knowing how to write about a research paper is really hard and I can take the time to focus on that before I move on because I'm not so stressed about this big paper. That's really cool.

Jameson:

And that builds all my other skills on top of that as well.

Kristen:

Yeah. Thanks for sharing that.

Jameson:

Yeah, no worries. I'm happy that you found that that was helpful.

Gwen:

Thanks for joining us for this episode. We appreciate you so very much. We'd sure love it if you'd subscribe to our show in your favorite podcast app and rate us, preferably with five stars.

Kristen:

We love hearing from our listeners. So visit our website to reach out via email or through our voicemail box. You can sign up for our free newsletter. Or better yet, join our communal closet where you can grow in community with us and each other.

Gwen:

Get on in there by visiting youdontwantahug.com. See you next time.

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