Autism Awareness Month: Podcast Episode #2: Navigating an Autism Diagnosis
Updated: Aug 7
April is autism awareness month on the Curious Incident podcast we had the opportunity to speak with Elisa Chrem, who is the Principal of Imagine Academy, a school for children with autism and other developmental disabilities.
Elisa Chrem joins the program to talk about her experiences and to give advice to parents whose children have been diagnosed with autism. Ms. Chrem draws upon her background as a speech-language pathologist and shares relevant anecdotes about educating children with autism.
Every student that Elisa Chrem has met always brings something to the table. She approaches each student in a completely different way to try and figure out for that individual child how she can do things vastly different from how she has approached another child.
You can listen to our discussion on your favorite podcast player. Below is a summary of the podcast along with the entire podcast transcript.
The Curious Incident Podcast: Episode 2: Navigating an Autism Diagnosis
How to navigate students with special needs
If a parent is noticing red flags or curious incidents with their child it can be overwhelming as to what to do next or even where to start. Often times parents have not yet identified the issue or received an autism diagnosis. So, if a parent is experiencing something with their child that they can't explain the first steps would be to;
Schedule a comprehensive evaluation
Evaluate the current services that the child is receiving right now
Set up a meeting with the child’s current educational program
Look for outside resources (OTs, PTs, Speech pathologists)
For additional support, parents can contact programs such as Imagine Academy to receive guidance on where to go for an evaluation and what the next steps should be.
Once the child has a diagnosis parents should send all the evaluation reports to the child’s current educational program. Their child's program should create recommendations for the next steps, along with which programs should be recommended for the child. Education programs and services will vary depending on the age of the child and what programs or services the child has already been receiving. It is equally important to evaluate all the programs your child is receiving to make sure they are meeting the needs of that child. Identifying the appropriate placement is so important.
70 to 80% of the families that are receiving a diagnosis are currently in a preschool program, and will then need appropriate placement and additional services.
Defining progress in schools for special needs children
According to Elisa Chrem progress is really how we define progress. Some students attend a program and meet all their goals. Educators can't write new goals fast enough. They are thriving within the program. Other students are more slow and steady, and that's also great. And then you have students that really make minimal progress despite every resource that you are providing them.
In these situations, you have to go back to the drawing table to figure out the next steps for the student. Some of the things as educators that we discuss would be;
Is there another program that might meet this child's needs better than we can
Are there other mitigating factors that get in the way, such as home life, sleep issues, or food issues
Are they severe behavior issues
Should medication management be accessed
It is important that communication is open and honest with everyone involved, especially the parents. You want to do the very best that you can possibly do for that child.
Inside the classroom for special needs children
Inside a program such as Imagine Academy, you will have a variety of adults in a classroom. Adults include the headteacher, a board's certified behavior analyst, or BCBA, who does a lot of the writing of the programs with the classroom teacher. You will also have classroom instructors who are at different levels of their education. Additionally, you will have related service providers coming in so they may be coming into support during a group, they may be pulling a student out or two students out, dependent upon what they're doing. Some of the service providers include additional special programs for the students such as science and technology programs, swimming classes, field trips, and even parent and sibling involvement within the program.
It is also important that just because a child has special needs, that child is not entitled to enjoy all the things that life has to offer. These children should not have to sit in a room all day and just learn.
Life has to be more than that.
Quality of life is key for special needs children
A positive outcome for a special needs child would be that this child is available and appropriate to go out into the community and do work activities and recreational activities. They're happy. They enjoy their life. Their leveling of anxiety is on the lower side. These children are able to express some of their thoughts and feelings. And in general, they feel good about themselves and they are productive in their lives.
If you have questions that were not covered in the podcast or need guidance about how you should move forward, please contact the Law Office of Adam Dayan at 646-866-7157 to discuss your particular circumstances.
About the Law Offices of Adam Dayan
Adam Dayan Esq. is a New York special needs attorney. Established in 2009, the Law Offices of Adam Dayan has had the primary purpose of making sure children with special needs receive a quality education and long-term financial security.
Curious Incident Transcript - Episode #2 Navigating an Autism Diagnosis
Speaker 1: This is Curious Incident, a podcast for special needs families, your window into the world of special education. If you have a child with special needs, wherever you are on your journey, look out for those curious incidents, those telltale signs, those aha moments so you can find guidance and take advantage of the resources available to you. Here's your host, Adam Dayan.
Adam Dayan: [00:00:30] I am very excited to present my next guest on this podcast. Today, I am speaking with Elisa Chrem. Elisa is the school principal at Imagine Academy, a school for children with autism and other developmental disabilities in Brooklyn, New York. She has been working with students with autism since 2003. In 2006, Elisa began working at Imagine Academy as a speech language pathologist, in 2008, she became the interim principal and in 2009, [00:01:00] she began working as the school principal, which remains her current role. Elisa, welcome to the program. It's great to have you here with us today.
Elisa Chrem: Thank you so much. I'm very happy to be here today. I'm pleased that you asked me to do this.
Adam Dayan: Happy to do so. So let's get started. Let's clarify why you're here, can you tell us a little bit about what makes you an authority on the subject of special education?
Elisa Chrem: So I would say two main things make me an authority. [00:01:30] One, the students have made me an authority. They've put their trust in me to educate them and I've learned from them and I continue to learn from them every day. And I would say along with the students of course, their parents. And my years of experience in the field and my dedication to continuing my own education and as you mentioned before, the research and really staying current on everything that's happening and available [00:02:00] for my students.
Adam Dayan: I'd like to pick up on something that you said, you mentioned learning from your students. You've been doing this for a long time. I'm sure you've educated many, many students, I know you have. Tell us a little bit more about that. How have you learned from your students in the process of educating them?
Elisa Chrem: So with every student that I meet they bring something new to the table for me and I begin to think in different ways because I have to analyze why [00:02:30] they may be presenting with certain signs, symptoms, behaviors, communication deficits, and always trying to figure out for that individual child how to do things and so that might be very vastly different than how we've done things for somebody else. So with each child that I meet it's about going deep into their profile and learning new ways to do things.
Adam Dayan: That's great. [00:03:00] You have a background in speech and language pathology, how has your speech language pathology background informed your role as school principal and informed how you view special education and autism?
Elisa Chrem: It has definitely made a great impact. I think as a school administrator with a clinical degree it's just a completely different lens that we approach the job with. My background is not in management. My background is [00:03:30] in kids and being a clinician, so that's what I bring to the table in terms of how to run a school.
In terms of being a speech pathologist, I would say it's a main focus of our program because that's one of the major deficits for a student with autism. So having communication, first and foremost on my mind, is really something that drives our program.
Adam Dayan: [00:04:00] Let's talk more about communication deficits. I know you have students in your school with a wide range of needs, what types of communication deficits do you typically see?
Elisa Chrem: That's a great question. So the first and the hardest would be a student who doesn't really want to communicate, so how do we get somebody who is locked into their own world wanting to communicate with us? So that would be your most severe case [00:04:30] of a communication deficit.
Then you have students who may be nonverbal, who can learn to use a device or a picture system, and they are wanting to communicate. So you don't have to work so much on communication intent but just building a system that's going to be reliable and consistent for them.
And then you have students who are verbal at different levels. They may need support in creating messages, grammar, [00:05:00] just putting things together, expanding their vocabulary, using more of the words that they have receptively expressively in their day to day conversations. So those are the different levels I would identify.
Adam Dayan: Great. For a parent receiving an autism diagnosis for their child can be scary, parents must come to you at all different stages, and I'd like to run through a few different scenarios with you.
Elisa Chrem: [00:05:30] Okay.
Adam Dayan: First, what do you say to parents who are noticing red flags but have not yet identified an issue or received an autism diagnosis or a diagnosis for some other developmental disability?
Elisa Chrem: So those are usually the parents of younger students and the first thing I would always recommend is that the family does a comprehensive evaluation. And I try to recommend also [00:06:00] some places that I think will do a good job on the evaluation, and that could be difficult in itself because it can be a very costly process for a family.
I also start thinking in terms of what services, even without the evaluation, that the child is getting right now or not getting right now and maybe what we can put in place in the interim so that we're not wasting time because an evaluation does take time.
I also look at where the child is in terms [00:06:30] of schooling and what we can do, again, in the short term, as far as making sure they're in a supportive educational environment.
Adam Dayan: So you mentioned evaluation, you mentioned services currently being provided, you mentioned current schooling, what other sorts of questions are you asking families who come to you at this stage to assess what's going on with them, what they need to be doing?
Elisa Chrem: [00:07:00] So we get a lot of calls weekly, daily sometimes, and parents are feeling that, "Okay, Imagine is a one-to-one program and I want my child to have one-to-one services," but it's not appropriate for every child. So we have to ask a series of questions to focus and pinpoint where their child might be on the spectrum or the level [00:07:30] of developmental disability and then make a decision, a determination on the phone about whether we want to continue the conversation, maybe have the family come in or am I going to refer them to another program? So some of the things I'm going to ask is how is the child communicating? How are they telling you that they want something or they need something? Is the child toilet trained? Are they playing with toys? Are they [00:08:00] interacting with their siblings and you as the parent? Are they interested in people? So these are some of the basic questions that I'm going to ask to determine just from a very wide perspective where this child might be holding developmentally.
Adam Dayan: Makes a lot of sense. You mentioned one-to-one instruction and or services, and I guess this is as good a time as any to define that, what do you mean when you [00:08:30] say one-to-one instruction or services?
Elisa Chrem: So one-to-one for us might look different than another program one-to-one so I'm going to explain how we do one-to-one at Imagine. Our feeling is that we don't want a child one-to-one all day with the same person. They become very dependent on that person. I don't think that's a good, long term plan. We do one-to-one that the child comes into the school and throughout their day [00:09:00] they are always one-to-one but with different professionals, so classroom staff, related service providers, which could be OTs, PTs, speech pathologists, the classroom teacher of course, and the classroom instructors, mental health services, so there's a team. There's a team assigned to every child, and that child is going to be with those different team members throughout the day. But the idea of needing this one-to-one [00:09:30] is that this child is not going to be able to function and not just function, but learn and gain new skills in an environment that is not with constant support for that learning.
Adam Dayan: Right. Scenario number two, parents have just received an autism diagnosis, they're coming to you to try to figure out next steps, [00:10:00] what do you say to them?
Elisa Chrem: The first thing I'm going to say is to please, of course, send me all their reports that they've received from that evaluation and I'm going to look it over really carefully. I'm also going to ask them if their child is currently in a school program, what the professionals are recommending that are already working with that child? I think that's very often overlooked. Let's look at the people that know that child right now and what [00:10:30] are they feeling is an appropriate next step. If I feel it is warranted, then I would bring them in for a tour and a dialogue and we would go deeper in terms of the conversation.
If after reading a report I don't feel like Imagine is the right school, I'm going to open up my school list. I am very versed in all the special education programs in the New York City tri-state area and I'm going to make some recommendations [00:11:00] about where I think they should try and reach out to, and maybe set up some tours with those schools that might be a more appropriate match.
Adam Dayan: What are some things that you would want to know from the instructors and providers who are working with the student currently?
Elisa Chrem: The number one thing that I want to know from them is where they're recommending, where do they see that child? Because often we're talking about a child who's in a special education [00:11:30] preschool or in early intervention, could be as well. So those providers that are coming into the house or seeing that child on a weekly, daily basis are going to have some sort of feeling about where they feel that child could be functioning. Do they see that child in an eight or 12 or an integrated? We want some feedback from those professionals.
Adam Dayan: Does your advice to these families differ depending on [00:12:00] whether the student is coming out of early intervention versus preschool versus a school age program?
Elisa Chrem: Yes, it would depend greatly on what educational services the child has already received.
Adam Dayan: Can you expand on that a little bit? How does it affect your decision-making or advice-giving process?
Elisa Chrem: For some of the students that come out of the special education preschools, I don't feel like they've necessarily received [00:12:30] intensive enough services so I'm going to lean more towards this child might need more one-to-one in the short term to get them going because I want to really make sure that they can function in a less restrictive environment.
For a family that comes from a public school or a less restrictive environment, and the child has not been successful, that would also warrant a different conversation of why hasn't that child been successful [00:13:00] or were the right services provided. Maybe they do need a more intense approach to get them moving and get them really learning and making progress on their goals.
Adam Dayan: Right. So let's segue into scenario number three, what do you say to parents who received an autism diagnosis a while ago, let's say several years ago, but there haven't been any improvements?
Elisa Chrem: So again, I'm going to look at the education [00:13:30] system that the child is in and make a determination of whether or not that program is meeting the needs or at least has the structure in place that would be appropriate for that level of that child. If the child is still not making progress then I may say it's time for a reevaluation to see that perhaps something was overlooked and we have to look at body systems. [00:14:00] It could be anxiety. There could be some medical thing that was overlooked. So we really have to step back and say, why isn't this child performing? Especially if I feel that they have been placed in a good educational setting.
Adam Dayan: From your perspective, how do those other points you mentioned factor in, body, motor, anxiety, how does that fit into the picture?
Elisa Chrem: It fits in that it could be the thing that derails somebody from their ability to progress. If [00:14:30] a child is not sleeping through the night, and I've worked with some good sleep specialists, that's the first suggestion I'm going to make to a family. "Well, if your child's not sleeping through the night, if they're only eating two foods, then these are things that are not going to help them get through their day and be able to learn and focus." That's something that we see a lot in kids with autism, sleep deprivation, nutritional issues, [00:15:00] and if we're not taking care of those things then it's really hard to make progress.
Adam Dayan: I know how I function on a poor night's sleep. I can't even imagine what it must be like for a youngster who's dealing with the kinds of issues we're talking about and is not getting the right kind of sleep or having the right diet or things of that nature.
Elisa Chrem: Exactly, and sometimes there are medical issues that go unchecked. So we work with some good [00:15:30] gastro specialists, and definitely mental health is a very core component. I would say the highest comorbid diagnosis with autism is anxiety disorder, and that could be something that really derails a student.
And then aside from all those things, maybe the educational setting is not a good match for that child and sometimes just changing schools and having [00:16:00] a new approach could mean a world of difference.
Adam Dayan: That's why identifying the appropriate placement is so important.
Elisa Chrem: It's key.
Adam Dayan: Finally, scenario number four, what do you say to parents who receive an autism diagnosis a while ago and there has been some progress but not really meaningful progress?
Elisa Chrem: I think it depends on how we define progress. I think there are students who come through our program [00:16:30] that fly, they're meeting their goals, we can't write new goals fast enough. They're just really taking to the program. And then you have other students who are more you're slow and steady, and that's great. And then you have students that really make minimal progress despite every resource that you're throwing at them and so then you have to go back to the drawing table and say, what else can we do? [00:17:00] Or is there another program that might meet this child's needs better than we can at this point? So you have to be honest as an educator because that's your client, that child, and you want to do the best that you can possibly do. But sometimes there are other mitigating factors that get in the way, sometimes severe behaviors. We may meet with the neurologist or the psychologist, psychiatrist on the team, [00:17:30] and talk about medication management. Is this child under-medicated? Is this child over-medicated? These things really play a part.
Adam Dayan: On the subject of behaviors, what types of behaviors do you normally see in your population?
Elisa Chrem: Everything. There's no [00:18:00] behavior I think I haven't seen from something very innocuous like just tapping on the table, that's not really harming anybody but can be a detractor to learning, to your most severe behaviors of severe aggression to others, to the staff, to the other children, to themselves. So biting yourself, banging your head on the floor, punching, [00:18:30] scratching, hitting, biting, spitting. I mean, all these things are what we see in a population that has communication deficits. "I can't tell you that I'm really upset right now in an appropriate manner so I'm going to hit you and then hopefully you'll understand what's going on with me." So we really work very closely with the [00:19:00] speech department to make sure that we have some type of a communication system in place, and it's really tricky for kids that may have a global deficit.
Adam Dayan: Sure. So we discussed a few scenarios before, I'm just curious, at what stage in the process do families usually come to you?
Elisa Chrem: I would say 70 to 80% of the families that come to us are coming [00:19:30] out of a special education preschool, so the turning five population. Then there's a percentage of students that are in public schools and they're very unhappy with the system, so that child might be in a six or an eight and they're not making progress. And then we do have students that come to us from other special needs programs.
Adam Dayan: Okay. And when these families come to you you must get lots of questions [00:20:00] like what's this going to mean for my child long term, what do you tell them?
Elisa Chrem: It's the most difficult question. Is my child going to get married? Are they going to go to college? Are they going to have a good life? And I always say, we're going to provide them with the tools and the resources that we have at our disposal, but there are so many things that go along the way in the years of development that can make a child succeed [00:20:30] or can make a child regress. It's really hard to know sometimes when you're looking at a five-year-old who is going to be the one who is successful and who is going to encounter more difficulties along the way.
Adam Dayan: So you mentioned having a good life, and I know that you view it as part of your role to help kids in your school to have a good life, the best that they can have, and so how do you talk parents through that conversation? How do you help families identify what having [00:21:00] a good life means or can mean for their specific child?
Elisa Chrem: I think the quality of life is key. And I know that when somebody is coming to me with a five-year-old and they're thinking about reading and they're thinking about college, that it's a complete shift in the thinking process. And one of the ways that we really try to bring families onto our page, so to speak, is to get them into the school as much as possible and do a lot of co- [00:21:30] treats with them at the school and just have them begin to understand that the roadmap that they may have had planned out, as every parent does for their child, is going to be different. And so that we have to celebrate the things that they're doing now and the things that we're working on and that we're wanting a functioning, happy, productive, can-be-part-of-our-world individual. That's [00:22:00] the most important key, not whether or not they're going to be able to go to college, and it's a huge shift for a lot of our parents. Look, some of our kids might go to college but I can't know that. I can't promise that to the parent of a five-year-old. It's difficult.
Adam Dayan: Sure. You mentioned the term co-treat, can you just clarify what that means?
Elisa Chrem: Absolutely. So bringing parents into the school is really key, and I know it's hard for families because everyone has such a [00:22:30] busy life, but one of the things that we do at this school is a methodology called DIR, developmental individualized relationship based therapy. It's the hardest thing that we do. In my own personal practice, it's the hardest thing to do. We want the families to come in and learn how to do this type of methodology with their child. It's also known as floor time, so we'll call it floor time, really just getting [00:23:00] into their child's world and interacting with them at a basic level at first and then moving up from there. Sometimes those can be the real celebratory moments.
So for a mom who hasn't had good reciprocal play with her child and now comes into the school and we're coaching and we're all in it together, we're all on the floor, we're in it together, that parent becomes part of our team [00:23:30] and the child starts to interact with the mom maybe in a new way that they never did before. It's a real triumph. It's a real moment of celebration for the family. It's hope for the future that I can expand now these interactions and build. That's the whole cornerstone of the philosophy of this play technique, to get more interaction.
Adam Dayan: That's really, really wonderful. That's really wonderful. [00:24:00] And I think sometimes we need reminders to celebrate the accomplishments. And I think for parents to have that opportunity to come into this school and work with the professionals in the school at the same time that they're working with their child in a play-based way to meet their child, where the child is on that level, that sounds like a wonderful opportunity to establish connection and engagement.
Elisa Chrem: We also go into the house [00:24:30] and we do play with the siblings are really important and never should be overlooked. I know there's been a lot of research that shows that if we ignore or overstep the siblings, that that has a very negative downstream effect. And as somebody who, in my private practice, goes into homes, I'm always looking to bring the siblings into the play, not all the time, but a portion of the time so that we make [00:25:00] sure that we're working with a family system, we're working with the parents, we're working with everybody in the home. Anybody who's with that child needs to be part of that play routine with us and really learn how to interact. And it's about also showing our support for the family, that we're there with them. We're standing next to them, not across from them.
Adam Dayan: I think that might be a good segue. I was going to ask you, what do you consider a positive outcome? And I realize [00:25:30] that may be different for different families and there might be various components, but what do you consider a positive outcome?
Elisa Chrem: For me, a positive outcome would be that this child is available and appropriate to go out into the community and do work activities and recreational activities. They're happy. They enjoy their life. Their leveling of anxiety is on the lower [00:26:00] side or we've managed it to be on the lower side. They're able to express some of their thoughts and feelings. And in general, they feel good about themselves and they are productive in their lives.
Adam Dayan: That's great. So my next question for you before I launch into it, I want to ask you to define a phrase that as part of my question I think may come up later in our conversation, and that's less restrictive. Usually gets used [00:26:30] in the context of less restrictive environment or less restrictive setting. Can you just briefly explain what that means?
Elisa Chrem: Absolutely. I think there's been so much emphasis on the less restrictive, and that's like the golden ticket. It's what everyone's striving for. Sometimes it is a great thing to strive for, and we are certainly pushing some of our students towards a less restrictive environment, but it's not right for every student. What it means [00:27:00] is that we're going to have them in a less supportive placement than they're currently in.
So Imagine, it is considered a more restrictive environment. It's one-to-one. So parents will come in, and I would say this question is almost asked on every tour I've ever done is, can my child mainstream after this program? And my answer is always the same, the goal is not to mainstream, the goal is [00:27:30] to go to a less restrictive environment if that's appropriate. But we certainly don't want to give a high level of support and then remove all of that support and say good luck and let's see how you do. It's not an experiment. It's a person and so we want to give the right level of support. And we also want to pull back the support when it's not needed. And being in a one-to-one program, we can pull back support. It's no problem.
Adam Dayan: In light of what you just said, that you're able to [00:28:00] pull back support as needed, how do you create opportunities for less restrictive or less supportive settings within your school setting? I mean, certainly pulling back support is one example, maybe you can discuss that a little bit further, and share if there are any other ways that you accomplish that.
Elisa Chrem: Absolutely, and it definitely becomes a focus as our students get older. And I have visited a lot of the post 21 programs and I have seen what life is like [00:28:30] on the other side and there is no one-to-one support after 21 and so we need to really prepare our students.
So here's some examples, that you can go to the store with two peers and one teacher and complete your shopping list, or do whatever it is you need to do, or you're going to go to a vocational site with only one instructor and two other students and be able to perform and be able to function. So that [00:29:00] would be an example.
As our students get older, and we judge it appropriate, another thing that we do is we give our students hall passes and we have them transition through the building independently. We want them to feel as independent as possible and have faith in themselves that they can do that and not be worried that they're going to get lost in the building. So we start out small of course but always building towards to independence. We've actually done some programs where [00:29:30] we may have a staff member wait outside of a store... And this would've been a practice routine. We're very careful in how we do things and have the student go in themselves and perform the task. So we're monitoring and we're there and maybe we've even called the store in advance and let them know, we have some good community partners, and that would be a way to lessen support but be there if needed.
Adam Dayan: That's super important. I think it's in line with what you said [00:30:00] before about generalizing skills, students, particularly students with autism need the opportunity to practice their skills in different environments. So they may learn one way in the classroom, they may even learn one way in the classroom with a particular teacher, but it might be different with a different teacher in that same classroom and it certainly could be different in a different setting, such as a supermarket or a restaurant or any community setting such as [00:30:30] the ones you've mentioned.
Elisa Chrem: Absolutely.
Adam Dayan: Do you have any anecdotes of students you've worked with that you can share to make this journey a little bit more concrete for our listeners?
Elisa Chrem: So in thinking about some individual profiles I can think of a student who came to us. He came to us from a public school and he had not learned to read. He was, I don't know his exact age, [00:31:00] I want to say around 10, and I'm sure they had used many different reading programs at that point and still he wasn't learning to read. He came to Imagine and we were able to teach him how to read, and that was a huge turning point in his life. Because if you can read, vocational opportunities open up and you can understand your world a lot better, you can use literacy as a tool for learning, [00:31:30] you can write, you can type, you can do so many different things. He ended up getting to the point that we were able to create a hybrid program for him, and this was of course before COVID, where he spent half of his day with us and half of his day in a less restrictive school.
Unfortunately with COVID, we couldn't continue it for now because we didn't want to mix germ pools, but that's something that we're hoping we could maybe pick [00:32:00] up again for next year. But that to me is a real success story. You went from making no progress in your academic skills to being able to go to a less restrictive environment and be able to do all these things in the community that we weren't sure were going to be possible when we first met him.
Adam Dayan: I think offering a hybrid program of that nature speak volumes about a school's ability to customize the program based on the individual student's [00:32:30] needs. So you may be in a program where you're receiving one-to-one instruction or services the entire day but then be able to transition to spending part of your day somewhere else, in a less supportive setting where you're going to be exposed to different types of students and have opportunities to make different mental connections and practice skills in a different way, which in my experience, as a legal practitioner, can do wonders for the student's [00:33:00] progress.
Elisa Chrem: Absolutely. We were very fortunate to partner with a good team all the way around, so his legal team really supported the initiative and the other school really worked very well together with us. There was a lot of logistical things that needed to be ironed out in order for it to work so we were very fortunate to have a good team.
Adam Dayan: Any other anecdotes that you would feel comfortable sharing? As much as I try to keep this [00:33:30] program not technical there is still some information that can be hard to grasp and I find that parents really connect with stories that make it more concrete. Anything else that comes to mind?
Elisa Chrem: I'm thinking of another little boy who came to us. He was a turning five. His mother carried him into the school because he couldn't walk so she needed to carry him in for the intake, and we met with him and he had a whole [00:34:00] host of medical issues and was non-ambulatory. And that's not really our primary profile of student but I felt that for this particular boy we were going to be the right placement because we had everything in place that he needed and so we did end up accepting him into the program.
He's now walking. He was actually just voted president, we had some elections in the school. [00:34:30] He's talking beautifully. He is doing academics. He is learning to read. He will always need one-to-one support in his learning, maybe not at the level that he's receiving right now, he's about nine now, and I can see that support diminishing over time, but I don't necessarily see him as a student that would go to a less restrictive environment. I'm not sure what that would do for him [00:35:00] in terms of meeting goals and learning new skills. So for me, he's a real success story and yet he's a child that is staying in our program. So it's, again, how are we measuring success? Obviously the family is beyond delighted with the progress that he's made and they're not looking to take him out. Their feeling would be he's doing great here so why would I want to remove him from that? So that's just another trajectory.
Adam Dayan: [00:35:30] That's great. Thank you for sharing those stories.
So you must get lots of questions from parents about what they can be doing to help their children outside of school, and I'm sure parents have concerns. I know from my own experience that I've seen parents have these types of concerns about going places with their children or potential outbursts that may occur. Travel and commuting is [00:36:00] a big concern for a lot of parents and overall safety in daily living. So how do you respond to parents who bring those concerns to your attention?
Elisa Chrem: So the first thing I want to do is get a profile or a work up of what's happening after school. Is the child receiving any services at home after school? Is that something that we're going to recommend or do we want to have some more recreational opportunities? So it really [00:36:30] depends on the child, on the student.
For our younger students, I tend to recommend more ABA and intensive learning for after school. As the students get older, I really want to shift to more naturalistic recreational types of activities after school because it just becomes too much. They're getting enough during the day that they don't necessarily need all of that after school. So joining a karate class or a [00:37:00] dance class, or going to a local community center to do some workout programs and making sure that the family has support through Com Hab or Res Hab, which is different programs through the city that you can get to have staffing.
Another thing is that I always use, Dr. Greenspan used to say, if you have less than a 70% chance of success at something that you probably shouldn't [00:37:30] do it. So if we're going to go to the restaurant and there's going to be a high likelihood that the child's going to have a meltdown, it's probably not something we should do. It is something the school needs to know because we've actually done restaurant programs with kids where we'll say to the family, "Tell us what's your favorite restaurant to go to," and we'll go in there and we'll actually practice that in a very systematic way and then hopefully it does transfer to when the child [00:38:00] is then going to do that with their family.
But then you have more complicated situations like getting on an airplane, and I wish I could practice that with the kids but it's really not feasible. If they're not going to be successful then I'm probably going to say, "Let's hold off on that at this time."
However, if we can put certain supports in place and we think there's a chance, a good high chance of success, then I'm going to push the family to try to reach out and do that because we don't want to limit [00:38:30] the world of the child. And as kids develop, and either behaviors and anxiety improve or things go in the other direction, which does happen sometimes, the world can either get bigger or it can shrink. And so we don't want the world to shrink. We want the students to be able to go to restaurants and community centers and the park and get on an airplane and go down to Disneyland or whatever it is that you're wanting to do as a family and so [00:39:00] we want to make sure that those opportunities are given.
I always tell parents start small and start supportively. What's doable right now? Can we put the child in the wagon and run through Target for 10 minutes and just see how they do? Maybe that's a good first step. Or just walking to your local candy store and let's go in and can we be successful, buy something and come out without having a meltdown? And then build from there. But I think it's really [00:39:30] important for the special needs community to explore everything that the neuro typical kids have access to, so zoos and museums and parks and overnights and whatever you can think of. If you can expose your child to that then you're on the right track.
Adam Dayan: I'm hearing or understanding that they should be doing so, parents should be doing so from as early in age as [00:40:00] possible, in bite size pieces to start introducing their children to those types of settings?
Elisa Chrem: Absolutely. And when there are school breaks coming up, we send out lists of places that we suggest trying. And sometimes other parents send to us information that we know other families have been successful at and we think are maybe just more open to having special needs come in.
Adam Dayan: Excellent. Makes a lot of sense.
[00:40:30] What role does community involvement and vocational programming play for families you deal with? I think you've spoken about community involvement a little bit already, you can add anything else that you'd like to add on that subject, but then there's [00:41:00] also vocational programming, which I think is an important topic as well.
Elisa Chrem: So the community partners are really important to foster, be it other schools, be it local community centers, any stores in the community, anything that you could identify that the students can go out of the building and do things in is amazing.
Vocational is probably the hardest. It's very hard to get consistent [00:41:30] vocational partners because as business change and as needs change from these vocational partners, sometimes there's not work available, and the consistency for my students is really important. So sometimes we're sort of home-growing our own programs and making our own opportunities for things, like we've done delivery programs and offered services at the school. We just launched a mentorship program with [00:42:00] a local school where they're coming in and our students are helping them do bears, it's like a Build-A-Bear Workshop type of thing, and so we prepped with our students, all the steps necessary in what they're going to do when the students came in. So we practiced all of that and then when the students came, it actually worked out really well. And I'm always hopeful that we can keep expanding that to more vocational opportunities, but I find the things that we home-grow are our [00:42:30] best vocational opportunities.
Adam Dayan: Right. I hate to say it, but I think as a country we're behind when it comes to vocational programming. We're doing a disservice to our kids by not having more programs, more job opportunities available to students with special needs, and that's unfortunate but I'd like to think that it's going to get better in the future. When, as school principal, as the person [00:43:00] running the show, at what point do you start thinking about those opportunities for your students?
Elisa Chrem: It's a great question. But just to touch on something that you said, I want my students to do more than pack groceries. They can do more than just bag groceries at the local supermarket, and that's the level that's currently offered. And I agree with you 100%, we need to find and create more offerings. [00:43:30] The second part of your question in terms of-
Adam Dayan: Right, at what point do you start thinking about vocational opportunities for your students?
Elisa Chrem: So again, it's going to depend on the students. Some students will stay in heavy academics longer because we know that once they leave us they don't have those academic activities available to them. So I might keep a student who's performing very high in academics heavy in that until even 18, 19, and not cross them over so early.
[00:44:00] For a student that is not as successful perhaps in academics and will do better with the vocational activities, I might cross them over earlier. So even at 12, I'm definitely thinking about that and creating some prerequisite programs for them to start working on.
Adam Dayan: If you had to sum up your mission and vision for individuals with autism, how would you describe it?
Elisa Chrem: It's [00:44:30] a big question. My mission is to help them obtain the best life that they can have and work collaboratively with the family. If I work with just the student and I don't bring the family into the mix, then I haven't been successful. So I want to create a stable family environment that we're all focused on what is the trajectory for this child and how do we get to those next steps and really working together with them.
In terms of the [00:45:00] overall mission, just broadening the scope of what's available. One of my dreams is to have some type of vocational open to the community at large to come and my students would run it. I mean, that would be my dream in life to be able to do that. But it's really hard to get to that step. There's a lot of obstacles in the way but it's on my life list.
Adam Dayan: I think that's an amazing dream. I love [00:45:30] it. And I have someone you need to speak with on that subject we can discuss further offline.
Elisa Chrem: Fantastic.
Adam Dayan: Tell our listeners a little bit about the home component, where does that fit into your mission and vision? You mentioned before that you sometimes go into the home, we've talked about generalizing skills, how does the home component fit in here?
Elisa Chrem: The more we partner with the home, the more the parents [00:46:00] see us as their teammates, the better the child is going to do. So for some families, it's a dream because that's what they're looking for and it's definitely one of the main questions that I will ask during an intake, what do you see as your level of participation? And some families really follow through on that. And we're certainly making the offerings and beating down the doors. Other families, it's just more difficult. They may [00:46:30] have more on their plate. If we're talking about a single mom who has three special needs children, it's going to be hard. But the better we partner, the more we understand the needs of the family, the more they understand what we have to offer.
Some families really come in and I see they're working our program, they're calling, they're coming, they're setting up the home visits, they're setting up the visits with our staff, they're coming in for the co-treats, they're [00:47:00] working the program. Those are the students that are going to do better because the parent is the driving force. And it's a shift for a lot of our families because they're warriors, that they had to find a school and they had to fight to get X, Y and Z services, but then there comes a time when you have to put down that warrior shield and now refocus on to being a warrior for your child in a different way, and [00:47:30] that really means rolling up your sleeves and getting in on the learning piece. So there's a really big shift there that needs to happen.
Adam Dayan: That's really important. So we've talked about ABA, applied behavior analysis, we've talked about DIR, floor time, tell us a little bit more about how you help the students in your school, a little bit more about your educational model in a nutshell.
Elisa Chrem: So I think for some students the ABA [00:48:00] is really key if they're coming in and they don't have the ability to sit and learn and to focus. We're going to really sit with those students and use a lot of the structure and the principles of ABA to get them on track. I would say it's our primary lens in creating a lot of our academic programs.
But then if we forget the DIR piece, if we forget that relational piece, then we're really not addressing them as a holistic [00:48:30] human. So I need to know what's important for that child, what motivates them, what's the driving force in their life and use those things to build their development.
A day in the life at Imagine is you're going to have some related services, you're going to have at least two to three sessions of academics, you're going to have some groups, could be a science group, could [00:49:00] be a literacy group, could be a social thinking group, and then you're going to have all your individual learning times as well.
We also do a structured lunch period because for a lot of our students there's a lot of goals in terms of introducing new foods. We don't do behavioral feeding therapy but we do a sensory motor approach. It's the give permission approach. It's a very humane approach to doing feeding skills. [00:49:30] So all of these components are going to come together.
To make up the week we also do a swim program and we also build in some recreational fun time. So weather permitting, we can go outside in the backyard and run around and go on the swings and we have trips. We've done overnights, our summer program. We do outdoor swim and fun trips in the community, and that's something that's really important to me because [00:50:00] I don't think that just because you are a child that has special needs that you're not entitled to enjoy all the things that life has to offer and that you have to sit in a room all day and just learn. Life has to be more than that. So I feel very passionate about that.
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Adam Dayan: Let me ask you a few follow up questions just to give listeners a better picture or a broader picture of what happens inside the classroom, who is typically in the classrooms?
Elisa Chrem: So you're going to have a variety of adults in a classroom. You're going to have [00:51:00] the head teacher, you are going to have a BCBA coming in and out of that room, so that's the board's certified behavior analyst who does a lot of the writing of the programs with the classroom teacher. You're going to have classroom instructors who are at different levels of their education. It's a great job. Or anybody who's on an educational trajectory to come and work for Imagine because they learn. It's like a paid internship for them. And then of course, you have [00:51:30] related service providers coming in so they may be coming into support during a group, they may be pulling a student out or two students out, dependent upon what they're doing. So there's always a lot of adults.
Adam Dayan: In terms of the teacher to student ratios, with the exception of students whom might be transitioning to a less supportive setting, that's going to be typically one-to-one instruction either one-on-one with a teacher or one-on-one with one of the related service providers [00:52:00] or therapists throughout the entire school day, correct?
Elisa Chrem: Absolutely. At times, it's even two-to-one because if you've got the BCBA in the classroom, her job is to supervise the implementation of the program. So now we've written these programs, but are they being implemented the way that they were designed? So there's a lot of supervision going on in terms of how the programs are being run and is the instructor carrying it out the way we want it to be done.
Adam Dayan: Right. I think [00:52:30] you've enumerated many professionals already who work in your school, are there any other professionals who are employed at your school that you think you should mention that you haven't already?
Elisa Chrem: I think just to mention some of the consultants that we've brought in through the years and continue to bring in are really an important facet for any program. I think having the outside objective person come in, like an assistive technology specialist... [00:53:00] We just had somebody who came in yesterday. We've had a typing specialist who comes a few times a year and so we do typing for literacy and typing for self-expression, and that's been amazing. Obviously we bring in DIR floor time consultants. And all of these outside professionals, who we're paying as not an employee but as a consultant, I think they bring a lot to the table for the school. They help refocus, they revitalize us to some [00:53:30] degree and also they're coming with their area of expertise and so we want to make sure that we are really doing everything to the best that we can do it.
Adam Dayan: What would you say makes your school's approach or your services unique?
Elisa Chrem: I think the combined ABA and DIR approach is unique and it was not something that initially was so integrated when I first came to Imagine. [00:54:00] It was sort of like DIR in the morning and ABA in the afternoon and the left and the right hand really didn't know what they were doing with each other and so that was something that really, really developed through the years. And now I can absolutely say that there is great collaboration in terms of goals across all methodologies.
Adam Dayan: Great. There's so many different kinds of therapies available, speech therapy, occupational therapy, physical therapy, ABA therapy, prompt [00:54:30] therapy, from your perspective what role do these therapies play in the education of a student with autism?
Elisa Chrem: I think the right amount and the integration of that into the classroom. When a new family comes to us, of course they want five times a week of speech and five times a week of PT and all of that, but sometimes too much is not the way to go. So we want more integrated services, not necessarily [00:55:00] more services. So if there is a sensory diet that's being written by the OT and the cloud classroom staff don't know how to implement that then just giving more OT services is not going to reach that goal. So we want to make sure that there's this collaboration across all of the disciplines, but most importantly, that those providers are collaborating and training the classroom team, that they're getting in there and the device is being [00:55:30] used throughout the day, the sensory diet is being done. If the PT is saying, "Okay, this child needs a stretching routine twice a day," then that has to be implemented into the classroom. So it's about the way all of it comes together that I think is the crucial piece.
Adam Dayan: Right. You mentioned earlier partnering with various organizations, can you talk a little bit more about how that works?
Elisa Chrem: So sometimes an organization will [00:56:00] come to us, which is amazing, sometimes we're seeking out organizations in terms of maybe something very specific that we're looking for them to give to us. So there is a local community center that has done a lot for us, just providing space for events, use of their pool, we've done trainings for them as sort of a gift back to them. So we always try to give something back. We have partnered with local vendors [00:56:30] for vocational. Other schools have been great in terms of mentorship programs, so the students will come to us. And then we might go to them for an event for a carnival or something that they're hosting. And I think those opportunities are really important for a variety of reasons. Obviously it gives our kids opportunities to interact with other kids but also it's about breaking down barriers. So we're educating [00:57:00] the students in the neuro typical schools to understand the special needs population.
Adam Dayan: I just want to follow up about after school services, first, how do you determine whether a child with autism needs after school services? And if so, which ones? And what's a parent's role in the provision or delivery of those after school services?
Elisa Chrem: So in terms of the respite services that we provide after school, [00:57:30] it is exactly that, it's respite, it's that this child is getting to do some fun interesting after school activities before they go home for the rest of the day, and that's wonderful because I think families, especially large families, really can use that extra help.
As far as help in the house after school services, I think that there has to be good collaboration between the school. So whatever the home team is doing should somewhat [00:58:00] match up. I mean, you don't have to have this perfect world doing the same thing but at least somewhat be on the same page, especially when it comes to things like behavior management is really key. And I think that the home teams, in that way, have an easier time pulling families in because they're already in the house. So always bringing the families into that is very, very key.
Adam Dayan: How has the COVID-19 pandemic affected your school? [00:58:30] Can you discuss some of the challenges of remote instruction for your population?
Elisa Chrem: I told my staff we'd be back in two weeks, obviously I was wrong, when we shut down. It was very, very, very difficult. Remote instruction was just not something that worked well overall for our students. I mean, there were some exceptions to that rule but it was very, very difficult. It was very [00:59:00] difficult to launch a whole new platform and we all had to learn the technology, okay, that was on our end, but we were really asking our parents to be therapists, to get their kids to sit down and get in front of the computer and work, and it was really, really difficult. We actually opened up in July, so we did hybrid. We got special permission from the Department of Mental Health to open that summer because I just couldn't see going on [00:59:30] remote anymore and so we started hybrid and then thankfully were able to open in September.
And then we were in the red zone, if everybody remembers the zones for a while, and we had to close for a little bit of time, and so it was really devastating, again, for the parents to have to go through that. And the staff certainly didn't want to be remote again. It's much, much harder to provide services remotely and so not a good run for anybody [01:00:00] and definitely some regression in some of our students, depression in a lot of the students. Consistency and structure is key for our population and so it really upset the apple cart.
Adam Dayan: It's so sad. It's so sad. You hear about it and read about it all over the place, the impact that it's had on students, and [01:00:30] especially for the types of students who we're speaking about today.
Elisa Chrem: Absolutely.
Adam Dayan: What have you done? How have you responded to that or addressed that to deal with the increased anxiety, depression and other issues that you've been seeing as a result?
Elisa Chrem: So when the students came back we had to reassess everybody in terms of not, of course, just their academic levels, but really taking a pulse on their mental health status, and there were definitely students that needed more support [01:01:00] at that time. And so we made decisions about who was going to get more services and who was going to get prioritized at that point because we really felt that it had been such a dramatic shift for them and we were able to provide more for the students that needed it. We actually brought on any other therapist at that point because we said this is the time that we really need to up our mental health game and make sure that we're not skipping [01:01:30] that very important part and just thinking, "Okay, we're all back and it's back to business." Wasn't so back to business so quickly, it took time to rebuild.
Adam Dayan: Sure. What does life after Imagine Academy typically look like for your students.
Elisa Chrem: It's difficult. It's difficult. Imagine is this all-inclusive service that's meeting every need that we can anticipate and [01:02:00] then you go into the post 21 world, and there's not a lot of offerings. The level of support is poor. It's one to four, one to five ratio, and now your student is being asked to really function on their own so what happens is they're left to their own devices. They're not productive.
A new program that came out a few years ago is called Self-Direction, is very complicated [01:02:30] to set up, but I encourage my families if they can manage Self-Direction, that that will provide better services in the post 21 world.
Adam Dayan: Can you clarify what that is, self-direction?
Elisa Chrem: So it is through the Office of Pupils with Developmental Disabilities, you are required to go through your care manager. It's a shift in terms of how the money is [01:03:00] allocated, so if your child goes into Day Hab, the city is paying for it. And if they're getting Res Hab or Com Hab, that's also being paid directly through the city through however amount of hours that they deemed appropriate.
With self-direction, they come up with a score and based on that score a dollar amount. So for that dollar amount, then you can choose to spend the money how you want to spend it. I mean, it's not that [01:03:30] easy, there are caps on different categories, but you may choose, "Okay, I'm going to put my child in Day Hab three days a week and the other two days we're going to do community classes. We're going to do horseback riding. We're going to do a music class. We're going to do", whatever it is of interest to that particular child. So there's definitely more available, but the responsibility then is on the parent to set up a lot [01:04:00] of these things and you have to get a broker for it. It's much more involved but it is a much higher level of services.
Adam Dayan: Before we conclude I have to ask, what fuels your passion? Why do you do what you do? What drives you to get out of bed and go [01:04:30] into school every day?
Elisa Chrem: So one of the things that somebody once said to me was it must be a very depressing place to go to everyday, and I'm like, "Depressing? Clearly, you've never been to our building. We are such a happy, upbeat environment." I think what fuels me is the students. It's the families. It's the comradery of the teams is very important. You've got to have good functioning [01:05:00] teams.
My diplomas are not on the wall behind me. What's on the wall behind me is the letters and the thank you notes from the families because that's what's important to me. That I know at the end of the day I'm doing some good. I'm doing some good in the world.
Adam Dayan: Do you know I have that same answer? I mean, the part about the letters and thank you cards at least. People ask me, what fuels you, and that's it. And my team feels [01:05:30] similarly. We get those thank you letters and sometimes from the kids themselves, "Thank you for helping me get to school," and it's the most heartwarming touching aspect of what we do and it just makes you feel like all of your hard work and efforts make a difference.
Elisa Chrem: And they always seem to arrive on just the day that you need them, right?
Adam Dayan: Right. You've told me about [01:06:00] having a bring it on attitude, can you say a little bit about that?
Elisa Chrem: One of my professors, when I had gone back to do my masters in leadership, he was just a real firecracker this professor, and he said, "There's going to be problems every day, so you can sit at your desk and say whoa is me, how am I going to get through this?" And we've of course all had those moments. Or you could say, "Bring it on. Bring it on. Let's see, come on team. Let's get together. How are we [01:06:30] getting through this?" And that's how you do it.
Adam Dayan: I love that. I really do. I'm going to use that in my life. I know you have a masters in leadership and I just want to ask you, what does it mean to you to be a leader in education?
Elisa Chrem: I really learned a lot from that program. It surprised me. I thought it was going to be a lot of fluff but I have to say it really wasn't. It was a fabulous program to go through.
I think it's about [01:07:00] working together with others, building teams and bringing other people up. I don't want to stand on this top podium by myself. I want to be on the level with all of my other colleagues working together. That's what I see for myself as being the leader. Yeah, the big decisions fall on my desk, but I'd like to know that there are people standing behind me supporting me so that I'm not alone. I don't [01:07:30] think a leader should have to feel that way. I think you should feel that you've built a team where you're bringing in people that you know will support you and you moving together through things. And it's also about finding other people at your position that you can connect with and bounce things off of. For me, that's been really important in my development as a school principal.
Adam Dayan: What's one [01:08:00] interesting fact about you?
Elisa Chrem: Oh boy. I think an interesting fact about me is that I did not start off thinking that this was going to be my career. I actually went back to school when I had three children already. I ended up right before my acceptance to grad school, getting pregnant, and so I did that with [01:08:30] three kids, one on the way. And then finished grad school, I was working part-time and I was finishing my degree and raising four kids, and so I never want anybody to think it's just so easy to do it. It wasn't. But if you want something, you can go for it. And I think determination and perseverance are the most important things.
[01:09:00] I really work very closely with a lot of my young staff that come to me and say, "I don't know, I don't want to go back to school. It's so hard," and I sort of tell them my life story, and I say, "You think it was easy to go to college and then come home and do homework with my kids? No, it was really, really hard. I gave up having any fun in my life for a few years to get it done, but the reward on the other side is worth it." So I really consider myself somebody [01:09:30] that really pushed her way up and worked really hard to get there, and I'm proud of myself for that.
Adam Dayan: That's really inspirational.
Elisa Chrem: Thank you.
Adam Dayan: That's wonderful. All right, where can our listeners get more information about your school, Imagine Academy?
Elisa Chrem: On our website, which is www.imagineacademyforautism.com. We have an Instagram page, imagine academy. We're not on Facebook [01:10:00] or Twitter or any of those things, but we really update our Instagram page a lot. So if you want to see the happenings in our school, that's really the place to see it.
Adam Dayan: Phone, email, do you want to give those out?
Elisa Chrem: Sure. So it's firstname.lastname@example.org or you can, again, go on our website and fill out any of our multitude of forms there to get in touch with somebody. You can give us a call, 718 376 8882, and the main office extension [01:10:30] is 125. We would love to hear from you.
Adam Dayan: All right, I think we are at the end. I want to thank you so, so much for coming in and being a part of this program, for taking the time to be here educating our listeners and for the wonderful work that you do day in and day out, and the many students you've helped and the lives you've changed, especially [01:11:00] throughout this pandemic, during the most challenging of circumstances. So thank you for everything you do and I'm looking forward to continuing to be in touch with you.
Elisa Chrem: Thank you so much for inviting me today. I really enjoyed doing it.
Speaker 1: If you like what you hear, join us every month for new episodes of Curious Incident, a podcast for special needs families.
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