How to Advocate For Your Child with Autism in an IEP Meeting with Amanda DeLuca and Kirby Morgan

Transcript for Podcast Episode: 152
Amanda DeLuca and Kirby Morgan: How To Advocate For Your Child With Autism In An IEP Meeting
Hosted by: Dr. Mary Barbera
Guest: Amanda DeLuca and Kirby Morgan

Mary: You're listening to the Turn Autism Around podcast, episode number one hundred and fifty two. Today we are talking all about IEPs and advocacy, and our guests are two moms. They both have children with autism, and they are both master IEP coaches. The first one is Amanda DeLuca, and our second guest is Kirby Morgan. And both of them are a wealth of information. I learned a ton. We talk about IEPs versus 504s. We talk about ABA and the IEP. What to do if you don't agree with the IEP? The differences between a younger child IFSP versus an older child IEP. I mean, just all these acronyms. We break them all down. And I think it's a really valuable show. So I hope you like this interview with Amanda DeLuca and Kirby Morgan.

Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host. Autism behavior analyst and bestselling author Dr. Mary Barbera.

Mary: OK, so Kirby and Amanda, I'm so excited to have you both on here. Thanks for joining us today.

Kirby: Thank you for having us.

Amanda: We're happy to be here.

Mary: Yeah. So let's start with just briefly telling us about your fall into the autism world. Why don't we start with you, Kirby?

Amanda and Kirby's Entrance in to the Autism Realm:

Kirby: I was thrown into the autism world when my son was about 18 months old. He started showing signs by not speaking, and he didn't have the traditional huge regression. It was just that he never really progressed. So one day he was playing with a toy, a leapfrog house and had a doorbell, and he repeatedly would touch this doorbell, even though the sound of it would make his face cringe like he was in pain every time he touched it. So I started on my Google and I was like, Oh my gosh, all these things, he doesn't point. He doesn't wave. He does it. Everything has to be prompted. It was easier for my son to carry a laundry basket around. Flip it upside down to which things he couldn't reach himself, then come and ask me because communication was just so difficult for him.

Mary: Yeah. So he was diagnosed at what age?

Kirby: At two years and four months. I was told at two years that I would have to wait six more months to see free speech therapy changed anything. But after four months, I was like, I'm not waiting anymore. It's not changing anything, and I need to get more support on board. I needed. I needed real help to help him and I advocated and at two years, four months, he was diagnosed.

Mary: And now he's how old?

Kirby: He is 10 now, which is hard to believe I have a 10 year old.

Mary: Yeah, OK. And then, Amanda, how did you fall into the autism realm?

Amanda: So my son Jackson was typically developing until about 12 months old when we went in for our twelve month well check, he was checking all of the correct boxes. He was saying his words. He was responding to his name. And then at 13 months, we lost everything. He no longer was babbling. He wasn't saying any words. It was like he was in his own world and we couldn't reach him. So I began to ask our pediatrician for a referral. He told me that my child was not autistic because he didn't flap his hands in front of his face. I was a first time mom and I was chasing something that wasn't there by chance. We saw our nurse practitioner and he referred me for a speech apraxia evaluation. We ended up at two years and one month getting our first autism diagnosis. My husband didn't go with me to the appointment because we thought we were hearing speech apraxia and that we could handle. We had a plan for that. The doctor said autism spectrum disorder level two. When I came home, we went through the denial phase that everyone was wrong. This isn't what was really happening. We got a second opinion. Three weeks later, we didn't take any of our paperwork, any of our paperwork from our first appointment and the doctor word for word diagnosed my son with autism spectrum disorder level two. So at that point, we knew that we needed to get him in ABA. We already had speech therapy in the home. We needed to look at a developmental preschool for placement because he wasn't going to be able to do traditional school because he was nonverbal and we knew what the supports look like in our area. And that's really where we began was regression.

Mary: OK, and then how old is he now?

Amanda: He is seven and a half. OK. And he's completely verbal now.

Mary: Oh, nice.

Amanda: We've come a long way.

Mary: Excellent. And I have done video blogs on things that you talked about. Kirby, like the first signs pointing, lack of speech. I have done video blogs and podcasts on autism regression so we can link those in the show notes as well. But really, you guys, I mean, the start of your journey with autism was also your start of your journey in advocacy, right? And so many of my guests, myself and myself included, had to learn how to advocate for our kids very early on because we were told Now, wait, maybe it says, Go over here now, wait again. And it really, unfortunately. I mean, I'm more than two decades out. You guys are a decade and a little less than that out. You know, it seems like it's getting slightly better, but is still. Very confusing for parents. But I want to take most of the time to talk about IEP and advocacy and just really, let's just start with the basic question What is an IEP? What does it stand for and what is it? Whoever wants to answer that?

What is an IEP?

Amanda: So the purpose of an IEP, which is an individualized education program, is to meet your child's unique needs specific to your child. And this document should prepare them for further education, independent living and employment. And under a law free and appropriate public education is a right to each and every one of our children, regardless of their diagnosis. So it's sort of foreign language and foreign concepts until you come to the table. There is no manual. There is no class that says this is going to be coming up. Let's make sure we understand what's happening. So Kirby and I both were sitting at a table where we didn't feel like what was happening was right. We were being read a document. We didn't have input. There were things that were missing. Behavior support was not offered at all, and I knew my son needed that to be successful. So we both knew we had to start educating ourselves so that we could do better for our child and do better for other people as well.

Mary: Yeah. So an IEP is an individualized education program, and it is, as you said, a requirement of IDA and a free, appropriate public education. And it's actually a document and it's a legal document.

Kirby: I've been told it's a legally binding document.

Mary: Yeah, it's almost like a contract. And it is. And we have a global audience where people from over 90 countries who purchased my online course at some time in the past few years. And so we have a very global audience. So this we are talking about United States and we are talking about age kids ages three to 21 get an IEP. Now, if you're younger, you get and IFSP is that correct? So what is? Well, we'll turn to you, Kirby and IFSP, what does that stand for and what does that do?

What is an IFSP?

Amanda: So an IFSP is an individualized family service plan, and that's more early intervention. And in our early days of ABA in clinic, they wrote ifshe piece and it was more your goals to help your family navigate life under a new diagnosis and a child with additional needs. And then through our early intervention here, and I'm not sure what it was like for you, ladies, but they helped facilitate that transition from IFSP to IEP. They contact the school, they said, We have a child on our radar. They're going to be tested for special education to qualify. They don't write the IEP, they don't. The IFSP doesn't transfer over, but it is sort of that starting document for really the needs of your family and not quite individualized to your child at that point.

Kirby: In California, that's called an IPP. We are California's the only state that has regional centers, but county by county has one, and they're basically you are assigned a social worker and they help you navigate the process and you create an IPP, which is an individual program for you. It's basically the same thing of your family goals. But here in California, it's all done through our regional center and they help facilitate that transition to public school.

Mary: OK, so that's good to know. So California has a different system. So from birth to three, it's an IPP instead of an IFSP and that goes through regional centers. Yeah. It's so confusing. Like, I know this stuff, not because of Lucas. Because I mean, back then I was just confused. Like, What is life? Is it? But I was working as an early intervention provider in the first three program from 2010 to 2017, when I went pretty much all online. But, you know, it is really confusing, but no matter where you are, if some entity is paying for services, you are going to have a document like an IFSP or an IEP. You're going to have, you know, present at levels, meaning this is where we're at. You're going to have goals that you all need to agree on and you're going to, you know, basically have a plan. Now, in some other countries, like I was just talking to Kelsey, our community manager, and she's in Canada and she's getting she's going to an IEP meeting soon for one of her sons. And she said that in in Canada, they do IEPs. But it's not. It's not a contract. It's not. There's not really anything to it, but so we're going to really focus on the United States and the legal system here, I have done previous podcast with Gary Meyerson, who's an attorney. I've done some work, some solo shows on advocacy because I had to be a strong advocate for Lucas and also for my nephew with dyslexia. So this doesn't have anything to do with just autism. An IFSP could be for kids with just developmental delays, and an IEP can be for any kind of, you know, educational needs. So now there's another thing called a 504. And there's so there's a lot of questions about which is better and IEP or 504 which I have or what's the difference? So one of you, can you answer about five offers before we really dove in more?

Kirby: Yeah. So a five or four and IEP has 13 qualifying categories under idea. So those categories include autism, ADHD, dyslexia, there's 13 categories. However, if you don't fall into one of those 13 categories, the district can provide a 504 for planning for any disability. Meaning if you're significantly behind in reading if you are significantly affected by something psychological that's going on in your home. It's just another document that they take data and create to support the child. A 504 can also follow a child to college so you can take your Bible for plan to your college if you attend a college, and they will make those accommodations for you in your college education as well. So a 504 plan is just a little bit different only because it just takes care of everything that doesn't fall under the IDA Act that was in 1975. So if you're not getting an IEP or you're not getting educational diagnosis is because an educational diagnosis in a medical diagnosis is different. So if the school is not doing a educational diagnosis of autism, you may end up with a five year plan to help with behavioral issues or whatever issues you are seeing.

Amanda: OK, I see I see a five four plan. Use more with our medically complex kiddos and more with accommodations and modifications, or that they need that nurse care or kids who were transitioning off an IEP. I mean, really that that does happen at the later grade levels where they they don't need the academic support, but they do still need accommodations and modifications. So we transition from the full blown IEP into a 504 that's more to support them.

Kirby: Yeah, it's like a blueprint of how you're the child or the adult needs to be accommodated to be successful in the learning environment.

Mary: Yeah, yeah. I've heard of kids with pans or pandas. I did a few video blogs and podcast recent podcast on pans and pandas getting fiber, of course, because they didn't have developmental delays or even necessary learning challenges. But they had tics or OCD or medical issues that needed some accommodations. So that's a good explanation. So we're going to really be focusing, though, on IEP, because autism, like, like Kirby said, is one of the 13 categories where most kids that I have seen as clients. My son had IEPs over the years, so I've gotten I've had to get good at advocacy because of that. In fact, I think my very first IEP meeting when he transitioned from an IFSP to an IEP, I think I actually was somebody recommended. I bring an advocate to my very first IEP meeting and I brought one, and I think they were a little shocked. I do want to say that I think the transition from two to three is a rough one, especially because, like my son and many, many other kids are diagnosed right around that time. And so my son was diagnosed with autism one day before he turned three. But the planning for him to go to whatever services were based on the fact that he had a speech delay. And so all of a sudden, you know, he's supposed to start with services for speech delay, and now he's got moderate severe autism. And it's just a hard process, especially because IFSP the contract that you have when your child's birth to three is very family oriented in the home. All parent training parent really needs to be there working hand-in-hand and then the IEP tends to be more center based. Put your kid on a bus and then there's a whole lot of unhappy campers, the parents and the kids, to transition to that IEP. So what are your tips for making that transition smooth?

How to Prepare For Your First IEP Meeting?

Amanda: So the first thing that I tell every parent is you need a communication system written into that IEP so that you know who is working with your child, what services they are getting on a day to day basis, what their schedule looks like, where they are struggling. Because if you don't have communication from the adults that are working with your children, most of our children can't tell us what their day looks like, what their struggles are, if they have speech today, if they didn't have speech today. So making sure that a school to home and home to school communication program is written in is really important. A lot of our kids have sleep struggles and dietary troubles, so it's important for us to be able to tell the school as well. We were up all night long. You didn't really eat breakfast. If he's extra cranky, this may be why. If you're noticing behaviors, it's because we were up all night. So really, communication needs to go both ways so that the team knows that you want to be collaborative as well, and it holds everyone accountable as they're supposed to be getting speech therapy minutes. This is a way to make sure they're getting the speech therapy minutes or bowtie or whatever it is.

Kirby: Yeah. My biggest tip is to learn as much as you can because I went, unlike you, Mary, I went to my first IEP thinking, No problem, I got this. My husband was like at work, or we don't even know who they are because I was really expecting it to be more like the first plan that we had where I had a lot of input. Well when I got there, I was at a table with full team that I've never met, and they had a document prepared 20 pages long about my son, what his goals were going to be. And I was kind of speechless, almost because I had no idea what I was really walking into and had I atleast spent 30, maybe 40 minutes just understanding the process of it before I went into it this year. So it's just so brand new. When you are at that age, it's that age is just you're in the thick of everything, you're figuring out services, you're arranging ABA, you're you know, there's so much that goes into the two to three year old things that really understanding as a parent, your rights at the IEP table is so important.

Amanda: Like, I didn't know I could ask for a draft before my first meeting, so I hadn't even seen the document before I walked in to that meeting. And that is your right as a parent to request and receive a draft. So it's little things like that that you learn as you go. But nobody, unless like Mary said, you hire an advocate before you wouldn't know those things.

Mary: Yeah. And even some of my clients, they were like, Oh, I don't have anybody watch my child or my three kids. Oh, bring them along. It's like you are entering a contract negotiation and now you've got a child with autism and another kid along or whatever. It's like, it's just so easy to kind of just sign, you know, sign things or or really put all of your trust in the professionals that are there. And really, it's not even the professionals, it's the whole system. And you know, and then both of your kids were diagnosed at two and started ABA therapy. And so how does that work like, you know? Can you request ABA therapy? Can you request certain things be put in the IEP? And I know kind of the run around, I got related to that. But like, is that is that a common problem?

Amanda: Yeah. So Kirby and I always say that ABA is like the hidden secret. It's like the hidden gem that every school district holds. They don't want you to know that they offer it. They don't want you to have it in your child's classroom. When we went into our evaluation, which is your ETR, your tri annual review, Speech therapy was there. Physical therapy was there. Occupational therapy was there. There was an intevention specialist there. And I said, where is behavior therapy? I know you have a behavior therapist that the district contracts with why are they not here? And my school district's response was, how do you know about that? It was a secret, I said, because I know everybody and I talked to other moms. That's how we learn things right. We talked to other moms who have done this before us. So I knew from the very first moment that they were going to be resistant to behavior therapy, but my son needed that support so that he understood how to appropriately work in a classroom setting. It wasn't OK to throw chairs that it wasn't OK to clear to us that it wasn't OK to just walk out of the room because he was done. We needed to put the work in early to prevent bigger behaviors later, and I got a lot of pushback from that. My first IEP meeting. We met three times before I signed because they didn't want to offer ABA support. We are not doing that. Well, you are doing that or you are saying you can't accommodate my child and you're going to pay for him to go to ABA and you really don't want to do that. It's very expensive. So we had to meet with our superintendent before we finally signed because they were not going to let us have behavior support in the classroom.

Kirby: I have a very similar experience that Amanda had. My one of my questions was, do you have individual support or an ABA because my son needed to learn how to learn? He first had to understand that you have to sit at the desk before they could put something on the desk for him to do, and he was thriving in ABA. And that was no part of the meeting. There was no part even discussing what his behaviors were. It was like we just skimmed over that whole fact. And I even asked because the company that I work with has contracts with some school districts, can they come in and they're like, Absolutely not. They have to be a school district employee. So I had to really advocate to get him behavior support in the classroom at age three because it's like you get speech, OT, PT if your kid needs it, they'll even bring in a gen ed teacher. But they kind of leave out that behavior component unless, you know the word FBA functional behavior assessment. There is a part on the IEP that says, does your child's behavior impede their learning at three years old? I don't know a child with autism at the level that my son had it or any level really that does it need behavior support and behavior does not impede their learning. So I think that. The schools are now coming more around to welcoming behavior support and BCBAs into the classroom. However, I would say I hadn't seen that until my son was eight years old, so it's always something that I personally had to push and request. It wasn't something that was just standard and offered.

Mary: Yeah, yeah, that's a good point. Kirby, and as part of the IEP and IFSP can be very lengthy. Seventy pages could be could be 30 or 40, but they're pretty lengthy, including a lot of standardized pages. And one of the pages, as Kirby was saying, was a list of questions such as And you guys could probably recite them by heart, but like, does your son have communication needs? Are they blind or visually impaired? And one of the questions pretty low on the sheet is does your child have behaviors that impede the learning of him or others? And if that box is checked, which, like Kirby said, it needs to be checked for any child with autism that has not just throwing chair behavior, inattention, vocal stimming while the teachers talking, I mean, that's impeding her learning and the learning of others. Any kind of problem behaviors and it doesn't, you know, when I've been at IEP meetings or talking to parents, they're like, Oh, they set that box was only for the throwing the chair kind of behavior is just like, Oh, no, no, you know, he wouldn't need ABA. He wouldn't need services in general if he didn't have any problem behaviors that were impeding their learning. So like Kirby said, sometimes you have to be very aware when they go over those boxes that that check that boxes check because it says right under that box that if you check this box, you need an FBA, which is a functional behavior assessment. You need a behavior plan to address these behaviors. And that's where then, that checking the box really does support the need for a behavior specialist, although and maybe you guys can answer this because I don't know the answer to this. I think I know, but an FBA, a functional behavior assessment cannot be done by a general, a teacher, a special ed teacher, a behavior person. Does it have to be a behavior specialist or a board certified behavior analyst to do an FBA?

Who can provide an FBA?

Amanda: My answer is always yes. They will try to get away with collecting data from the general teacher, and data is fine. But when we are trying to determine the function of behavior because we all know that some of them are dual function, which makes it very difficult to write intervention plans, it needs to be a board certified behavior analyst because they truly have studied. They know how to implement and they can oversee the care plan. OK, we don't want an occupational therapy assistant writing care plans. We need an occupational therapist. This is no different. The RBT or the SRBT can deliver the therapy. But we want the BCBA taking the data, writing the plan and overseeing what that progress and support looks like. Schools will try to get away with it. I don't let it happen.

Kirby: 100 percent. Yes. Try to get away with it. And you have to really just say that I'm sorry this person is not qualified to administer this assessment. And if you, you know, if I need to, here's a list of places that have qualified BCBAs that are able to do this if you need to contract one. Here are their phone numbers because some school districts will act like they don't even know what a BCBA is and they have them on staff. But unless you say the words directly to them, they will....And I think it revolves around saving money and budgets. However...

Amanda: You think or you know?

Kirby: Well, I know I don't want to be diplomatic.

Mary: So I think in addition, because we have, you know, when we have teachers, we have school administrators, you know, potentially listening to this podcast, too. I don't think anybody is trying to be harmful. I think it's a Triage situation where there's even if they have a board certified behavior analyst on staff or they contract with and there's only so much time in a day, there's a lot of kids with problems. And it's also a lot of like red tape to bring in somebody. And it's not just eyeballing them, but to do an FBA. It's hours. It's paper. It's another meeting. It's, you know. And as a nurse, it feels like a triage situation of ya know we are using our BCBAs to handle kids throwing chairs. But at the same time as a parent and we're all three parents of special needs kids of kids with autism. And it's like, I get that. I get that. I feel like in some ways I'm kind of rushing the line and like, I know the words to use and I have the secret handshake and I'm going to make it happen. But at the same time, it's like, This is my child. This is his life. And, you know, as a behavior analyst, I know he doesn't need to be throwing chairs to need behavior analyst help, and I can't personally be in there because I'm his parent. And so, you know, it is a tricky situation, but you know, I just want to make it clear that we're not like anti schools. You know, we we're not trying to throw professionals under. In fact, a lot of the teachers that I've worked with over the years, my son is twenty five now. You know, they were kind of happy that I was raising a fuss because they're in a situation where they can't sound the alarm, because then, you know, all pressure is them, I mean, do you see that happening?

Kirby: Absolutely. Every day. I think that the teachers are the ones that at least Jayden's teacher. My first experience was the one leading me like he needs more. He needs more support because she needed more support. She had a classroom full of children with special needs. And my son could not even sit on the carpet or he was eloping learning area, I think between twenty five and one hundred and fifty times a day. He really had to come a long way, and it was not only impeding his learning, but it was impeding the classroom and without the support of behavior. He was the teacher was thinking, and the teachers I have found are usually the kid's biggest cheerleader, and they're often the ones that, you know, are nudging the parents because they know if they speak up, things will happen.

Amanda: Hmm. Well, and you know, here's the way I always look at it. If we can provide behavior training to a paraprofessional, to a general ed teacher, then that benefits my child and every child after it doesn't have to be direct ABA services. Let's look at what support for school personnel we can write in so that we are putting things in motion so that there are sort of this foundation of blocks laid for my child and every child after where that's a new concept for schools, nonviolent crisis intervention and delay denial. These are all newer concepts in the school setting because it was only clinical before. So by advocating for these supports in these trainings, like you said, it's not. We're going after the school. We're just trying to make it a safer environment for everybody.

Mary: Hmm. Yeah. And just getting back to, you know, we have lots of people listening with older kids as well. And, you know, getting back to the parent needs to be a very big part of the IEP team, whether it's your first meeting or whether it's your 10th meeting. When you go to an IEP meeting, I always give the advice like at least bring another person, even if it can't be your spouse or your partner. You know, bring your, your sister or your mom or the neighbor, or even an adovcate. But you know, if you bring another person, then you feel like at least that person can take notes. Could I speak up if you, you know, it feels better? Is that is that a good idea? Or what other tips would you have no matter what the age of the child for attending an IEP? Meaning what should you bring? What should you prepare for in terms of an IEP meeting?

What Can You Bring to an IEP?

Amanda: So let's talk about right now in this weird pandemic time. Your data, your data is equally as important as the members of the team. You saw what your child needed to be successful if they couldn't learn virtually, if worksheets were not working, if they thrived on, you know, using technology as a form to type and learn how to do their spelling words there. That's all important. That's all helpful information. So don't feel like you are coming to the table and just being read a document to take at face value. Your data is important. Your questions are important. And Kirby and I say this all the time. You are the only person on that IEP team that never changes. You will see it from beginning to end. Everyone else will come and go because your child ages out of their program and so forth. So own your seat. Take responsibility over that because you matter. Your opinion is valid.

Kirby: That's our number one message that we try to give parents on that seat at the table because you are the expert on your child. You fill that role and you may feel like you're at a table with a full of experts in their particular field, but you're the expert on your child. You're the one that sees day to day. You see him after school. You see him or her before school, you see. ABA happen, you see what works, what doesn't work? You are there to, you know, use that seat. That's our biggest message that we try to empower parents with because it is an intimidating situation and sometimes it's really intimidating to speak up or say, I don't really agree with that. And. Even though it's hard, me and Amanda we advise our members of our community to have, like, write down some key phrases in question in a moment that you're really flustered and things are getting really intense and you can have these scripts and you just look down and you know what to say, because IEP is for our parents, even me is, you know, it's not the easiest thing. You're there talking about what your kid can't do and how much support they need to succeed. So having just like a layout of the things that are important for you to that, you want to stay in that, you know? So that you're not using your time at that table and dumping complaints or not speaking up. We really advocate for parents to be prepared and have their little scripts written so that when things get in that moment, you can speak up. And I totally advise having even if you get your neighbor and they're there to take notes you bring, like, don't ever I alone. I did it once I walked in and I was like, So I would never want anyone else to experience that if they don't have to, because it was jarring for my first eight p.m..

Amanda: And I think it's important for people to remember you do not have to sign that document that day. They urge you to, and it's sort of led to that. But this is a lot of moving parts. There are a lot of changes that happen. So take the document home. Read it over. Make sure it is written exactly as you heard it at the meeting. Make sure that if you had questions, they are noted and they are answered. So take a couple of days. Tell them I'm not comfortable signing right now because a lot of changes have been made and that's not doubting your school system. That's human error, right? We're all passing this computer around. We're typing, we're trying to make notes as things get discussed. It's just like proofreading. So we want to make sure that we're doing that. And like Kirby said, speaking up, if you're not a confrontational person, ask it in the form of a question. I don't think I truly understand what we're doing here. Can you explain that further? I think I heard you say, but it looks like this ask questions that makes it feel less confrontational.

What happens If You Don't Agree With What is Inside The IEP?

Mary: And what if you don't agree with with what they're presenting, like you don't agree that he should be in a self-contained classroom for the whole day? You don't agree with the fact that they don't want to do one to one or they don't want to get in the board certified behavior analyst like one of you just don't agree or don't like what's happening. Like what? What then can you do?

Amanda: So you have a couple of options. You can sign the document and say, I agree with related services, the goals that I do not agree with, the time we need to meet again to discuss increase in minutes or increase in support. And Kirby and I always say you need data to support every decision made in that IEP. So they're saying we don't see the need for a one to one. OK, well, the data shows that he's a x amount of times. It shows that he is self injuring X amount of times it shows that he is off task x amount of times. The level of support he is getting now is not what he needs to be successful. So we need to trial some additional support, collect some more data and then meet again in a couple of weeks to see what progress looks like. They love data. They love to trial things we all do because then we can see what it looks like without it and with it, and then come back together and make a decision. But sign that you agree with part one, two and three. You do not agree with part four. And we're going to collect data, trial a new intervention and come back in four to six weeks and meet again. Sometimes it does have to go a legal route if you cannot continue to come to an agreement. But if we are trying to work collaboratively with our team, data, trial periods are great ways to try to start that conversation.

Kirby: And then I think this is where parents that were using ABA before we know about data and we were, we're used to having data. And I don't know if it happens everywhere, but we have like a monthly meeting and we would go over what's working, what's not working, what we're going to change in the bit in his plan and data has really shaped everything that we have set up for my son. And so I think knowing a little bit about data before I came into my IEP because of ABA was extremely helpful because I said, Where are your graphs you don't have like, where's your where's your account of things like, you know, you're not taking data in the classroom? Because I was used to seeing constant data from my son's ABA provider and BCBA. So I agree. And then usually the next step would be mediation. I have found mediation some terribly unsuccessful. However, you can always go with the next shot is a due process hearing or you get someone that will oversee everything, relook at everything and then make a judgment decision. And that holds more weight than anything. And it gets the kid usually what they need, however, me and Amanda really strive to be collaborative with the schools because we really believe that the schools want to do what's best for each kid. What they all have, or they're just not thinking outside the box. They're not, you know, there's so many ways they can use the resources they have, and sometimes they need some strategic planning to help them get there.

Mary: Yeah. So let's switch gears a little bit. What about if your child gets suspended? He has autism and he hit somebody or says, I'm going to kill you or something like that and get suspended? Is that is that legal or what should we do about that?

Autism and Suspension:

Amanda: So it is legal here in the state of Ohio. Your child can be suspended up to 10 days before we have to make a judgment call. The approach I try to take with my school districts is did the child learn something from this consequence because it's a delayed consequence? They escaped the task that they were probably trying to escape in the first place. Behavior again. So that's when we look at the behavior analyst again. This is the perfect time to bring them in. What is happening, what is triggering them, what are the trends? What can we look at to prevent this from happening? Are there social skills programs that are written into your child's school day? Can we incorporate sort of an organized social skills group to teach why? That's not appropriate to say what we can say instead? Does your school have counseling services instead of suspending them? Can we really concentrate on some time with the counselor to talk about feelings and outbursts and things like that? But just like for the due process that we're talking about, your timeline is everything you need to be keeping immaculate records to talk about. You suspended him. For this, there was no consequence, we're seeing a pattern because he was now escaping the task. We really need to be proactive instead of reactive on how we can prevent this from continuing to happen again, that outside of the box, thinking, social skills group, school counseling services kind of behavior support person, come in and take data. You don't need a full FBA for that, but get someone who has a behavior background with eyes on this child to take data on. Is it happening with a specific school person? Is it happening in a specific environment? It is because they're being given a task that is above their comfort level. Typically, we can find a trend and sometimes public school is not the answer, and we've had to ask the school district for out of district placement. I have several clients who we've done that with because they just needed more structured than a public school could offer.

Kirby: I get frequent calls about parents saying they're asked to come pick up their kids because they're in the behavioral situation. So not necessarily. The school is not calling and saying, Hey, I want to suspend this child. They're calling to say, Hey, can you come and get your kid because they're behavior is out of control and we're not able to serve. We're not able to control him.

Mary: And is that legal?

Kirby: So that is not legal. And that is another. The first thing I ask is where is the district right now? Because our district has a few? So I always ask, where is Amy? Where as Amy, is Amy involved? Where is she involved? She's the district BCBA. And what? I will come get him. However, what are we going to do to bridge this gap? Because I'm not going to come get him every day. I am not going to come get him for every outburst and behavior. And that's again when you're calling.

Mary: And you really reinforce that behavior by getting out of the task, as Amanda said, and or gettingg to go home and play Game Boy or play PSwhatever. And it's like it can really snowball. And then also think about like what Amanda was saying, like social skills groups and those sorts of things. Those are for kids that can understand all that. Those are for the kids that are yelling, I'm going to kill you and have a plot and are kind of probably attention seeking and getting trying to escape. And then there's the whole lower end of the spectrum where they are not getting enough support. You know, having a classroom with 8 kids and a teacher and two aides is not going to cut it. For a lot of our kids who have need not just redirection but reinforcement for doing the right things, they need things broken down. They need data collection. One of the things I have an advocacy bonus video within my online courses, and it's like if you think your child needs a new placement, it's really not appropriate for you to just go in there too. And IEP meeting and say, I think you should go to ABC school and placed out of district, you actually have to make sure to build the IEP or change the IEP to be like the boxes. Check that he has behaviors. We have enough FBA. We have a behavior. We have a behavior plan. We have a person supervising the one to one. So it's not just throwing a one to one out of the child because of that one, the one is not doing the right things that can actually make things worse. There's a plan for all. This is your plan for a crisis situation. There's a plan for his daily things. And we're not just trying to put out fires, we're trying to teach the child, we're trying to prevent problem behavior and get the child to the next level. And if that all fails, then we go to a different placement. So I remember one of my first attorneys that I worked with, it's like, you can't just jump to the placement. You've got to make sure that the plan leading to that placement is right and that's your whole IEP.

Getting the Services Your Child Deserves:

Amanda: We really have to prove that they cannot accommodate, not that they weren't known because they don't want you, that they just can't because like you said, they may need a one to one who is very highly trained. They mean they may need additional support that just can't be provided in the school environment. Unfortunately, it doesn't work for every child. But then we need to talk to the school district about getting them to a place that can that can help them learn and grow and really make sure that they're safely doing that. And that does happen sometimes. But that's a rare case. That's not, you know, my child doesn't want to go to school anymore, and that's your fault. So we're going to send them somewhere else. No, that's not valid.

Kirby: Right. And even like children on home hospital, they still deserve an IEP and they deserve services. One of my biggest cases is a child that is was on home hospital for 12 years, and the school told the mother, I'm sorry, we don't give services to children not in place in the classroom if she wants speech, OT, PT or whatever support she needs to come to the classroom, and that is absolutely not true, that is absolutely against the law. No matter what your placement is, you, the services follow the child and the child's needs. So if the school cannot accommodate all those needs, then placement needs to be addressed. Placement so important placement decisions are so important. I always advise my parents to work toward them all after seeing every placement before you make a decision or agree to send placement, especially if it's your first IEP and you have no idea what the classroom setting is going to look like for your child.

Amanda: I think the term least restrictive environment is very confusing in those early years, and we don't know that we have a choice and we don't understand what that looks like. So really, touring and asking questions is important because least restrictive environment is important, and it is sort of a complex concept.

Mary: So let's pivot a little bit to the COVID situation where you know you might not be able to tour a place easily before I've been preventing prevented from touring places and people blame like, Oh, we don't want you to see the other kids who violates our privacy and stop. And really, I'm not comfortable putting my whatever age child on a bus if I can't even peek at what that looks like without him. And down the line with him in it, I make sure that he's doing OK because like you said, Amanda, like our kids, a lot of times they can't tell us how their day is going if they are doing well. So can you still be guaranteed that you're going to be able to look at placements given COVID?

The COVID World, Advocacy, and School Services:

Kirby: Here in California, we have something called an admin approved tour. I would speak to somebody in the districts if you're getting denied at the school level or we're in a day and age where we can think outside the box and we can have a virtual tour and we can have a virtual meeting and we can learn a lot of things. I think COVID really changed our mindset. Like I didn't know that my son needed to know how to touch on his Chromebook and like, press certain things and use a mouse where COVID has really changed a lot of things for both kids and parents. Like personally, my clients prefer to have zoom peace versus being at a table where it's more intimidating. So I think COVID in a way has opened the doors to more possibilities. If you're the time doesn't work for you, maybe a virtual time will work and that is a way to get to be able to see the classroom if the district is giving you are the school in the district are giving you a hard no and they're using COVID, which I call a universal excuse for everything is.

Mary: And what about staffing shortages related to COVID? Is that is that happening a lot? Is it OK to say we don't have enough staff for your child to come to school? I'm sure that's not legal.

Amanda: So in Kirby's state, they have now mandated vaccinations for school staff. So that has sort of thrown a wrench into things because not everyone was vaccinated and not everyone plans to get vaccinated to go to work. So they are experiencing staffing shortages. And here's the thing. We are in a new place where we have never been in special education before, so we are trying to deal with things with some grace and some kindness. But if you are short staffed today, I can understand that and I can accept that. What are you doing today to make sure that's not the case tomorrow? Because you can't say, well, until we find someone, we need timelines. We are in a day and age now where we've sort of been through the run of the pandemic. We know how to be prepared and what steps we can take, so I can accept that today we need a timeline. We need a definite plan. And I need a signature that tells me you are going to have someone there tomorrow. It depends on the needs of your child as well if you're not comfortable with it, just being anybody. We can't pick our team, but we can pick how qualified they are and what trainings they have. So if your child like Kirby's has epilepsy, if they need to be really comfortable with what seizures look like and how to deal with them, then we do need to have a little bit more jargon in that agreement, saying it needs to be someone with this background with this training and you have until x amount of time. You also need to document we will be seeking compensatory services for time lost because they were out of school, they were out of related services and that sort of help speed up the process there as well. I know you don't love that term, Kirby, but I do use it in that situation.

Kirby: I do use it to. And here we are definitely seeing the effects of these mandates. Our governor decided to be the first state to jump ahead of the executive order from the president. So we're about down 50 percent in students, which means children over 16 because they can't mandate something that's not FDA approved 100 percent. So right now, everyone 16 and older and support staff, school personnel, teachers, parents, they're all mandated and students. So they're about 30 percent down in staffing. So there is a lot of private contractors coming in, and I asked every single day to Jayden's teacher, how staffed was your classroom? Who was here? if there's no names that I'm familiar with due to that connection today, and I write an email about why he's not attending because like Amanda said, my son has a behavioral plan and health plan and safety plan because he is very behavioral. He is very, he has epilepsy. And we have to make sure that when I drop them off at school, he's going to be safe and his needs will be accommodated.

Where to Find Kirby and Amanda:

Mary: Wow. So I know we're kind of running out of time and you're both advocates and you're both what's known as master IEP coaches. And when you start throwing around terms like mediation and compensatory education, which I know, you know, those, unfortunately, because I've had to deal with them personally. But you know, it's too many acronyms and too much. But like you have an online community, right, where you provide this kind of coaching. So like, how can people find you or find other people like you to help them when it is not all peachy keen and they're stumped?

Amanda: Right? So Kirby and I serve clients two to one one to one, but that isn't feasible for everyone. Obviously, time can get expensive because there's a lot that goes into this. So Kirby and I both have Facebook pages. I am an Advocate.Out.Loud. Amanda DeLuca and Kirby is at Kirby Morgan, Advocate and beyond. We created a patriotic community with an E-Course called Mastering Your IEP for those who need support and want to learn and need a more affordable option. So we have a master class that goes from the beginning of the IEP document all the way through the end that walks you through present levels, parent input statements, goals, objectives, related services, all of those components. And then each month we do an additional training video. We've talked about behavior support in the classroom related services, communication plans, what a strong parent input statement looks like. All of these things so that parents can learn as they go, if that is more what is comfortable for them.

Mary: OK. So all of these will be linked in the show notes. MaryBarbera.com for research one five two. But can you just explain to me and others the and that's a private YouTube channel with a small monthly fee. Is that how that works?

Amanda: It's an app on your phone and it's a private community. You can join at a $5 or $10 tier or $15 tier, and that gives you access to what.

Mary: How would people find that it's called Mastering your IEP. Or is it?

Kirby: Yes, patreon.com/masteringyourIEP.

Mary: Okay. All right. Just so when you put it in, the show notes, right? So there's no confusion. So you know, you forgive. Both have provided so much value to us, and I'm sure there's going to be other people who want to dove in a little bit more with you. And we'll put some other stuff in the show notes, too. I am big on advocacy and I'm also big as you both are on collaborating with parents and professionals to help each child reach their full potential. So before I let you go for the day part of my podcast, goals are not just to help the kids, but also to help the adults who are listening. So do you have any stress management tips or self-care tips that you use for yourself so either one of you wants to start?

Amanda: This is actually one of our goals that we are working on with our in-home behavior at a company right now is my husband and I are learning how to stay deescalated ourselves as our son is in an escalated state, so we both had to target what our self-care in that moment could be. And you know, a lot of people think self-care is going to the spa, when you get your nails done and going to get a massage. It doesn't have to be carving out a whole day, doesn't have to be getting a babysitter so that you can go. So what I identified as my self-care was writing so that I can write down what is happening right now. I can choose to hit publish, I can choose to delete. But either way, I have to let it go so I can walk away. Once Jackson is saved for once, I tell my husband I need him to step in so I can step away. I can write a note on my phone. I can write a note in my journal and then I can acknowledge that things are hard and I can let them go. So that has really helped me learn to not escalate when my son is escalated, which has really helped with my stress level if I am safe and calm. It sort of prompts him and helps him also stay safe and calm.

Mary: All right. Thank you, Amanda. And now Kirby.

Kirby: Yes. So I love Amanda's in-home ABA company that she's using right now. I'm super jealous, and I wish I could find one here that really work the way they do because their strategies are excellent. However, I'm in on a waiting list right now for my home ABA. I hope to get off soon, but my biggest self-care tip is to know that the way I am reacting is going to affect Jayden. And so me knowing when I need to click out or walk away and go read a book, go upstairs and work on my website, do something that is not about autism or is not about the situation in the moment, it's really taking me a long time to learn that I need to walk away sometimes because the way I am affects change. So if I'm very escalated, he is very escalating. So for self-care, I have learned, you know, when I have to take that moment for myself and like Amanda said, there's not a day, there's not a month. But I have found connecting with other moms and meeting people that are in this community that I could walk away and call, walk away from that moment and have support in a ton of different ways. Whether it be your book, or whatever at that moment that I need and is available is super important to me because you have to just know when your reactions are feeding the situation with your child

Mary: And I think, you know, the three of us started as moms became working in the field. It is. It does feel like 24-7 autism sometimes. So just really taking the minutes to kind of keep yourself calm and regulated so that you're not adding to the situation and making it worse. So I love this discussion. You guys are both full of great information. Maybe we'll have you back some time to focus on another area of advocacy. I mean, literally, this could be days long. There's so much to it. But I think we gave our listeners the basics of, you know, the IEP process and why, you know, it's so important to have the parent be at the center of it and very involved as a as a team member and working collaboratively with teachers and school systems to help not just our own kids, but all the kids that are around them that are going to come after them. Because if we start raising the bar for our own individual child, we will raise the bar for others as well. So thank you so much for your time. Wishing you all the best and I'll see you. You'll hear from me next week with another episode.

Amanda: Thank you. Thank you for having us.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details, I hope to see you there.