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The Woman Behind the IEP: A Conversation with Glenna Crooks · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi, everyone. Welcome back to another episode of the Inchtones podcast. Today I have a woman that was brought into my life through networking and in fact her book and her profession and her title is the Network Sage. Glenna Crooks. Thank you so much for being here today and I am happy to discuss some of the most incredible beginnings of your work and how it'll benefit the community that I serve.
• 0:28
  Speaker B: It is such a pleasure for me to have met you in the first place. I loved our first conversation and to be here with you today.
• 0:35
  Speaker A: Thanks, Glenna. So you were a part of the creation of the very first iep. Can you walk us through what that initially looked like and the story behind that? Because as a parent to two children with non speaking autism in the audience I serve, that three letter term is so prolific in our day to day.
• 1:01
  Speaker B: You know, that's really true. That was decades ago. But in my. That was my first career. I'm in my eighth now, but I don't go anywhere today that somebody hasn't heard the term and know people that they grew up with or the children of their friends who have IEPs today. So here's the story. I went to college in an era where a lot of women were just starting to go to college and the career path that we had was either education or nursing. And I knew that I didn't want to do either one. My family had educators in it, and so they were pulling me in that direction. But luckily my aunt married a man who was a principal and he had a fishing buddy who was a school psychologist.
• 1:43
  Speaker A: The original network. Yeah, right.
• 1:46
  Speaker B: Yeah. Now. So I was interested in psychology. So school psychology was far enough away from education to please me, and it was close enough to education to please my family. So I went to school at Indiana University in Bloomington, and I was the first of a cohort of school psychologists who were not trained to just test and label kids. In fact, I don't think I ever gave a kid a diagnosis. I didn't think that was very worthwhile. We were trained to change the system around the kids. So when I graduated, I was living in the southwest part of Indiana, a lot of small towns. I think the biggest town that I served was about 15,000 people. There were some that were only 87 people. And not only were there English people, but Amish. So, you know, the Amish divide the world into Amish and then everybody else is English. So I had Amish schools to serve as well as traditional English schools. It was the first time, apparently, probably through some sort of federal grant That a special education district made up of three school districts across southwest Indiana were brought together to hire a couple of school psychologists. There was one in the largest town of 15,000. There was one special education class with kids ranging in age from 6 to 16 with one teacher and no AIDS. Children who had special needs at that time were not in school at all. So I did a lot of casting about and looking for kids. I found one who was 10 years old and was not in school because he had spina bifida and he lacked bowel or bladder control. He was wearing diapers now. He could ride a horse, he could ride a bike, but he wasn't in school. No provisions were made for him. I found teachers who would do homeschooling for him. I think with my experience today, I would have found a way to get him into a classroom that would have been better for me.
• 3:39
  Speaker A: Right. How were you even, how were you even granted access to find them? And this to me is such beautiful, heart led investigative work that aligned with your profession in a way that champions the people that are doing the work now. Like you had an innate desire to find these kids.
• 3:58
  Speaker B: Yes. And. Well, the other thing that happened is that when I showed up on the scene, teachers and principals were glad I was there. Now I was new in that town. I had grown up in the northern part of Indiana, now I was in the southwestern part. I was a newlywed. I had no network of my own. I was very distant from my own family and all of my friends from the university. So when I showed up and they welcomed me with open arms, I used that as the opportunity to really learn more about the community. So I didn't just stay in education. I talked with the priests and the preachers and the physicians and others and I networked my way to find children. One of the biggest heartbreaks I had was a 17 year old boy who had never been to school. Now, in the vernacular of the day, everybody in the town said he was quote unquote retarded. He wasn't. He was deaf. In 17 years, nobody had recognized that this child could not hear. Now I had very few resources to work with. This is a time when I learned how to write grant proposals. And I did get some money eventually to help, but also networking. I found an elderly couple who were deaf and knew sign language. In fact, they had a dog that knew sign language. And rather than send the 17 year old boy 100 miles away to the deaf school in the state, we were able to keep him in the community. And that elderly Couple started to teach him.
• 5:28
  Speaker A: Incredible.
• 5:29
  Speaker B: Yeah. So what happened is, in that era, as I said, children with special needs did not have a right to an education. We were watching case law emerge in Pennsylvania that would eventually establish that. Right. Right now what I did was I said, I never gave a kid a diagnostic label, ever. The only thing that I cared about is how does this child learn best?
• 5:54
  Speaker A: That's right.
• 5:55
  Speaker B: And what I would do is spend enough time with the child to figure that out using the tools that I have. I mean, all of the diagnostic work that we can do on children today wasn't even available to us then. We didn't even have a language for it. But what I was able to do by spending the time with them, by playing with them and so on, I was able to discern how do they take in information, how do they process that information, and then how do they tell us that they know it?
• 6:22
  Speaker A: Because that is probably the root of my motherhood as a special needs parent, is that all behavior is communication. Any child is in their presence. If you are present with them and mindful of who they are, they are telling you with every second minute that passes who they are, was that informing you as a part of it?
• 6:46
  Speaker B: Our views would be very similar on that. I think it's our responsibility to understand the child. And in the educational context. What I was interested in then is how does this child take in information? Are they even getting it? What's the best way? Does it have to come through their eyes, through their ears, through both? Is it a physical experience? What's going on there? As they are gaining information, Once it's inside, what are they doing with it? How are they processing it, how are they understanding it? And then how can they turn around and how do they communicate that to us? I think anybody who has been with a young child who is not neurodiverse would say, this child clearly understands what I am saying, but they cannot yet really have a conversation with me because they don't have that particular skill yet. A developmental stage kind of issue. So that's what I did. My IEPs were one page, and what I did was sit down with the teacher. Any other specialist, if there was a speech therapist who might have been involved with helping the child and both parents and I would describe what I saw happening with the child. Now, I will tell you that invariably, maybe nine times out of 10, it was the father who would say, that's me. That's exactly what I went through. So from there. So that was the sort of the one on one with the teacher and the child and the parent kind of experience. But I did something else, and that was I looked more at the whole of the context of the school that the child was in. I'll give you an example. We had one older building which I think housed grades one through six. This was an old timey school with wood floors and tall ceilings. And the noise drove me nuts. I mean, I don't know how the teachers could handle it because the echo just heard everything everywhere. So I decided that we needed to do something about the noise. And I got local men's groups like kiwanis or whatever in the community to donate money so that we could buy indoor outdoor carpet to lay down in the first grade classroom. I took carpet swatches in with me and I pulled up the colors, and I would say to the children, how does this make you feel?
• 9:15
  Speaker A: Right, right.
• 9:17
  Speaker B: And we got to red, and one of the kids said, ooh, I want to run on that. I thought, okay, we're not getting red.
• 9:22
  Speaker A: We'Re not getting red. Thank you for informing me of that.
• 9:26
  Speaker B: We ended up getting a deep blue carpeting. We put that down and it absolutely transformed everyone, including the teacher. She had decided at the start of that year it was going to be her last year because she couldn't handle it anymore. She didn't realize it was the noise. As soon as the place calmed down, she said, that's the problem. I'm not quitting teaching yet. She was a very beloved teacher, so that was great for the kids who would come after her. The other thing that we did is get the big boxes that major appliances will come in, and we built carrels for the kids so they had their own space and they could be less distracted by other kids in the room, decorate them up and so on. That was another thing that we did as well. So it was. Part of the effort was in the community finding these kids. Part of the effort was how do we match what the kid needs to what we're able to do and how do we get the additional money to make that happen. Part of it was looking at the whole context of what was going on in the school and the classroom to see if there were levers that we could push or pull to make it better, not just for the kids, but for the teachers as well.
• 10:30
  Speaker A: Well, that's. That's so interesting to me because the teachers in this, and this is a completely different conversation topic. The sensory overload of these instructors and educators has to be discussed when implementing all these things that you're discussing. Right like how that student learns. I love the idea of these big appliance boxes because that was that first ability to be in the classroom, but to have that sensory ability to focus without the distractions or whatever inputs they're getting from other students. Noises, the walls, the echoes, as you say. But that affects the teachers, too. And I think that that is such a massive point in all of this, because we have to take in the whole classroom, and that includes the processing abilities of the teachers to instruct and to be able to follow these plans that you so beautifully put in place.
• 11:25
  Speaker B: Yes. And when you think about all of the other things that we were asking teachers to do, that was an era, for example, where girls had to wear skirts or dresses and, you know, according to school regulations in public school, but it was also a time when girls started to want to wear pants. And so teachers were kind of caught between those tensions of what the kids or the parents wanted and what the school wanted on top of being the educator. So I tried a lot to relieve some of those pressures.
• 11:53
  Speaker A: Well, that's a mental. Again, mental load is a very prolific term these days for women and mothers and educators specifically, too, because we're requiring them to have such a high degree of awareness and sensitivity to not only the children, but to their own selves. That is a. That is a very high mental load. And I can only imagine what 30, 40 years ago, what that looked like.
• 12:21
  Speaker B: You know, I think there's something else, too, and I think this is a philosophy that was instilled in me at the university level and also comes from my own sort of ideas about, and observations about child development, is that, you know, if watching the development of a child is nothing short of miraculous. And I, you know, children. You know, children who are not neurodiverse, who do not have special needs, will totally learn their language by the time they're four years old. They will learn the entire structure of the language without ever sitting down in a classroom. I really do believe that as humans, we want to develop and grow and evolve as individuals over time. That most of the time we're being held back from that. And so part of our job as adults is to get out of the way, watch what's happening, unfolding developmentally, and support a developmental process, keeping child safe, of course, but support that evolving process in them because it will happen. That's. We're not. It's innate.
• 13:25
  Speaker A: That's primal.
• 13:26
  Speaker B: It's innate. It's. You know, kids are not blank slates. They come loaded with all kinds of instincts and Developmental capabilities we need to nurture wherever they are at, at that point in time.
• 13:41
  Speaker A: Something that is asked of me a lot is, and I posted about this on LinkedIn era. Why is the autism diagnosis rate so high? It's 1 in 36 right now. It never used to be that way. Decades ago, the numbers were one in a thousand fifty. And what you just said is something that I believe deeply in, is that we're paying attention. We're, we're paying attention to what these kids have always been showing us or exhibiting. Do you feel that?
• 14:19
  Speaker B: You know, I think you might be right. I've, I've thought a lot about this in my practice. In those three years that I was in that area, I never saw a child who was autistic, not once. And I've asked myself the question, why is that the case? You know, I knew that there were children in institutional settings because we had one on the university campus, but so I think that there. And by the way, there were so many needs hitting me anyway, I wasn't going into homes to try to find kids who might have been hidden there.
• 14:48
  Speaker A: Right, right.
• 14:48
  Speaker B: I mean, I find the kid on the bicycle or the horse because I could see him in town.
• 14:52
  Speaker A: Right. The invisible disability of autism was not described as such back then.
• 14:56
  Speaker B: Correct. Now, what was interesting is when I found a child who had special needs and in some cases, in retrospect, I think might have been autistic in the Amish community, I never worried about those kids. I knew that they, because they would always have a place in that society. There would always be something that they could do to benefit the community. They would be treated with respect. So, you know, they might not have ever buried, but they would not have been marginalized the way that a kid in an English school 20 miles down the road would have been living on the outskirts of society for all of their lives and ridiculed or whatever as adults. And so I have to say, in retrospect, it's just highly likely that I was focusing on the near term targets of opportunity to get things started with the programs that we had there. And I'll tell you, I burned out after three years.
• 15:51
  Speaker A: I mean, when you're talking about you're going to physicians and religious leaders in the community, in the schools. And then I think about the timeline of this, like, I'm tired thinking about that. For you, that that is four times the amount of work that you probably ever anticipated. Says every woman ever. Right. I mean, literally.
• 16:12
  Speaker B: Well, I think, you know, I did not enjoy school as a Kid myself. And it was. I think part of what I was doing is doing something for kids I wish people had done for me. And so that really kept me going. I really wanted to get these kids on a better trajectory for their lives. I mean, when I burned out and I went back to college and that's when I got my PhD. That's, you know, I moved from focusing on education to focusing on healthcare because healthcare was the first system that impacted the life of a child.
• 16:41
  Speaker A: Right.
• 16:42
  Speaker B: And there were so many times I would see a child and they were five or six years old, and I would say, oh, it feels too late. I wish I could have gotten to them a couple of years ago. So that's what led me then to think about healthcare.
• 16:53
  Speaker A: You said something else that just hit my heart, which is you struggled as a child in school or had a difficulty or reflect back on those early learning years. A quote that I'm not sure if you follow Glennon Doyle at all, but she has a quote that she said a number of times, which is, a woman's drive is to find what breaks her heart and make it your mission to serve and heal that population. So you were internally doing that. You had a energy source from your own pain point, which I love, because that's exactly why I'm doing what I'm doing as well to.
• 17:29
  Speaker B: I should tell you the rest of the story, though, because you asked about how does the IEP came about. So I had my own practice, but the state Department of Education in our state capital of Indianapolis was watching what I was doing because I was one of the new kids in town. You know, this was a whole new model and an experimental one that Indiana University had. So when the case law then settled in Pennsylvania and then state laws were being crafted, the state Department of Education called me up to the Capitol and I said, would you please come and tell us what you're doing? And so I did. And then ieps got baked into the legislation.
• 18:10
  Speaker A: Then what? Then go on and tell what happened after that.
• 18:14
  Speaker B: Well, I would have to say I. You know, I exited that arena for a very long time. I had a career in healthcare, in government and in industry, and I consulted. And in the context of my consulting work, I started to meet people, principally moms, but sometimes dads, whose lives are so complicated that they were thinking about leaving the workforce. And that's when I started studying people's networks and in the context of that, met a lot of parents whose children had IEPs. That's when I learned how complicated it is today. How adversarial it can be. I mean, it seemed to be such a departure from what we did. I mean, if you had been in One of the IEPs I did with parents and teachers, you would have thought it was a love in. But I get the impression now that both sides are bringing their lawyers with them. Percent how do you help somebody? How do you heal somebody? How can you possibly think you're going to make progress that way? I don't understand that.
• 19:12
  Speaker A: I think if I had, if I shuffled up all my parents that I know of children that have IEPs and I just randomly selected 10 of them for you right now, you would not find one person that would say it is a most loving leaning in love environment to understanding the child. They would say, this team has been around my child for a number of years and there's things to check off the list. But I've come with my sword and shield. And that, that does, that does break my heart. That does.
• 19:43
  Speaker B: It does mine. It does mine. In the work that I do in my book, I profile a woman I call Laura. Laura and her husband adopted two children as infants and they both have special needs. And when I talked with Laura about the networks and so on, we helped identify the people in them. What she realized is she was managing 47 people for just her oldest son. And she said, I haven't worked in my own business for six months this year. No wonder.
• 20:11
  Speaker A: Yeah, there's no, there's no ability to.
• 20:13
  Speaker B: Now another thing that she had found is he was 13 at the time when she said he's got three female psychiatrists. He said, but he's 13 and I would like him to have a male psychiatrist. And she said, and I found one and he's really good, but he's $400 an hour. So she's trying to figure out if they can fit that into their family budget. When she saw this data about all the various people that she was managing for her son, what she saw is that she could fire those three women, hire the man and come out ahead. You know, she said, for one thing, she said, I won't have to take him to three business a week and spend half the visit catching up on what happened last time, and I can save all of that money and clear those people away. So she came out ahead financially on that one. That's one of the things I see parents do, is that when a service that they have is not good as they would like it to be, instead of firing that one and hiring a different one, they tend to Add on a second.
• 21:14
  Speaker A: Right.
• 21:14
  Speaker B: And so this is a good lesson in how to think about what the total package is your child needs.
• 21:22
  Speaker A: Do you feel, though, the capacity to even think of it in that terms? From the management sector of the child's team of caregivers and providers and therapists, that takes a lot of internal processing ability. I went to this resource fair this past weekend, and I was. I had a booth discussing how to help with IEPs and the podcast. And so many parents, I mean, they are in a swirl of confusion how to even categorize that.
• 21:53
  Speaker B: I'm going to go a step further than you just said. No parent knows that.
• 21:57
  Speaker A: That's true. Yeah, that's true.
• 21:58
  Speaker B: No adult knows that. I mean, that's partly the value of the research I've done on networks is that because there is a particular structure, in one hour, we can identify everybody in your life. Without that structure, you would work for eight hours and maybe be 50% correct. Because when people are out of sight, they are out of mind. The other thing that happens with parents whose children have special needs is that they're going from crisis to crisis, and that also gets in their way. That's what Laura had found, too. She said, so part of. And I tell the story in the book, what she did was kind of, first of all, she figured out the psychiatrist issue. She took a step back and got her own energy back. And then the next time that her son had a meltdown in school, which he did three times a week, when she went in, she just said to the teacher, she said to the school, she said, it's your responsibility to educate my son. You have failed. So he gets to go to a private school. Here's three of them. Let's pick one. So she got him into a private school, and that better suited his needs. In all, there were eight people involved. She sat them all down and she said, it's your responsibility to educate my son. If you can't figure it out, one of you is welcome to call me.
• 23:15
  Speaker A: Right? So there's that.
• 23:16
  Speaker B: She's no longer. She's no longer negotiating with all the professionals, correct? Totally put it back on them. She called me up and she said, glenna, she said, we have a phone call every Friday morning and they're working for me.
• 23:29
  Speaker A: I think you just titled the episode that is exactly what every parent desires is this. We don't want to micromanage a team of 47. We want to know that everyone is working for the betterment of my child. And from a place of. I actually Give you power for what your skill set is. You know, I cannot educate my children the way that they need to. I don't have those skills. But I can lead and be the CEO of their management.
• 24:00
  Speaker B: In my framework, I talk about three types of people in your life. The first type is primary. These are the people closest into your heart and dearest to you. If they died, if they cut off a connection, you would be devastated. So that's your spouse, your children, your own parents or friends. Closest. This is probably no more than about a dozen people. And by the way, when I talk to women, they say, remind women to put themselves on that list. Now, for everybody who is primary in your life, like your child, you have certain intentions, okay? You hire people to help you with those intentions. Teachers, coaches, the parents of your children's friends, doctors, and so on. I call those support. They are working for you, so you should tell them what you want. They're not mind readers. And then everybody else is transactional. And one of the things I've seen in my research is that a lot of us go out in the world every day. We give a lot of the best of ourselves away to some of us transactional connections. We end up allowing a support connection to turn the tables on us. Like the lawyer who promised me by a date certain to have my will done and then change the date three times.
• 25:12
  Speaker A: Correct.
• 25:12
  Speaker B: Because it was not convenient for him. Okay, Now I'm supporting him, but I'm paying him for his service and I'm ending up accommodating him. We end up doing that and then we go home at night to the people we care about the most and we have nothing left.
• 25:24
  Speaker A: That's right.
• 25:25
  Speaker B: So part of this framework is to sort of I tell people, you don't need my permission, but if you want it, I'll give it to you to set the boundaries on those people who are support the way that Laura did with those teachers.
• 25:39
  Speaker A: Is this a part. Is this the main driving force behind your business these days? Because I can see this being such a benefit to so many in my audience that listen to to inch zones.
• 25:51
  Speaker B: What I have done is I have identified eight, what I call life networks. The people in these networks come and they stay for a very long time. Now, the first five I call birthright networks. And these are the networks that parents build for children. This is going to make total sense. It's very intuitive. So first of all, a family network. Second, a health and vitality network. Third, an education and enrichment network. Fourth, a spiritual network. And fifth, a social and community network. So now children start changing these networks from an early age. But we never outgrow what these networks were built to provide. Then as adults, we mature into three more networks. First a career network, then a home and personal affairs network. Personal affairs being things like your banker, your car dealer, you know, your lawyer. And then finally you have a network that I call ghosts. I didn't go looking for ghosts, but they kept showing up in my research when people talked with me. These are people who used to be in your life, who are no longer, but who could still be impacting you now. Then you have a series of what I call event networks. These are people who come in and help you temporarily. So a tree falls on your car, you know, someone's going to help you get the tree off the car and repair your car and deal with insurance. Those people would disperse as soon as they're no longer needed. What happens is if your life networks are robust and you're managing those well, if you have an event in your life, it'll go easier because you'll have people you can turn to for information, referrals, even hands on help. And congress is true too. If you have an event, then things will. And you have a good event network. It's going to protect the relationships that you have in your life networks, you know, so the time that my neighbor's tree fell on my roof, I had a good arborist. He was there in 20 minutes. He got it off my roof and there was no damage. You know, there is an example about that. If you have a sick child and your pediatrician calls you back in the middle of the night, obviously you're going to be in better shape in the morning.
• 28:03
  Speaker A: Correct? Yeah, correct. All of this information is not only so powerful, but I think it places the power back into the parents. Just by you speaking about these eight different networks, about your history in the development of the IEP is.
• 28:19
  Speaker B: I can't.
• 28:19
  Speaker A: I know how much it hit me because I've been thinking about it since we met. You are instrumental in. I know it looks so different than what it originally was put out in the world to do in a much different way. But the framework of this and the recognizing of the children's that are mine and millions of others in this world that are deserving of a free and beautiful and inclusive education, you are such a part of that. And I think it is. There's no accidents. It is apparent to me that we were meant to meet and for you to share this more, more loudly and proudly with my audience. So thank you so much.
• 28:58
  Speaker B: You're very welcome. You know, I'm going to once again harken back to the training I had in the university. I remember a professor saying that if a child was terminally ill and we thought he would die in a week, if he wanted to learn to read, we should teach him to read. I mean, every moment is precious and every child is special, so how can we do anything less than help them grow?
• 29:25
  Speaker A: Time is the one commodity that we cannot purchase. So to be present and mindful of the time that we do have and the time we are present is. That's a luxury in and of itself. To even acknowledge that and be mindful of it. Thank you for your work. I will be listing all of Glenna's details on the episode summaries once the episode is published. And, Glenna, thank you for your time.
• 29:49
  Speaker B: It was such a pleasure.
• 29:51
  Speaker A: All right, and until next time on the Inchdones podcast.