Wisdom Shared with Carole Blueweiss

A Mother Shares Her Journey of the Joys and Challenges of Raising a Child with Cerebral Palsy

Episode Summary

Anne Pratt, from Indianapolis, Indiana is an ABM practitioner and scientist whose 4 year-old son Charlie was diagnosed with cerebral palsy when he was 7 months old. Anne describes her experience with traditional and non-traditional approaches to Charlie’s individual needs, the challenges that her family faced, and how they found their current team of doctors, therapists, and support network. Anne also talks about her ongoing advocacy for Charlie, her own self-care, and offers wisdom to families with unique children. Her point of view is inspiring, informative, and deeply moving.

Episode Notes


Website: www.indymovevolution.com

Email: anne@indymovevolution.com


Treatment Modalities


Tools & Equipment

Defining the Body

The corpus callosum is the primary commissural region of the brain consisting of white matter tracts that connect the left and right cerebral hemispheres. https://www.ncbi.nlm.nih.gov/books/NBK448209/

Episode Transcription

[00:00:00] Carole Blueweiss: When it comes to raising children with special needs, the real experts aren't the paid professionals but the parents who are living it day to day. Welcome to Wisdom Shared. I am your host, Carole Blueweiss. You will hear from parents from all over the world who have extraordinary children. They have lots to share with both traditional and non-traditional advice and experience.

[00:00:28] Anne Pratt: How the public perceives disability will absolutely not change unless we parents fight for them. Most people are just ignorant of disability. To be perfectly honest, before I had Charlie, I knew that cerebral palsy was a thing. But I had no idea what it really was or what a person with CP actually looked like.

[00:00:51] Getting that information out there via a podcast or giving a presentation or going to the doctors and saying, hey, here's this great method, this ABM Method. Why don't you guys think about prescribing this as a therapy after a child is born with special needs? 

[00:01:09] Carole Blueweiss: I met Anne Pratt at an Anat Baniel Method training course, and I realized quickly that she was intelligent, compassionate, and direct, and she had a lot to share. I wanted to give voice to parents who have children with special needs.

[00:01:29] I am so grateful that Anne agreed to be the first person interviewed on this podcast, Wisdom Shared. Anne attended Ball State University for Aquatic Biology and Fisheries Management, and she also obtained a master's degree in Stream Ecology. She now works primarily as an ABM practitioner, which she will explain in her interview.

[00:01:54] She still works in an environmental laboratory. She is an author for online science courses. She collects house plants and currently has over a hundred living plants in her house. She lives with her husband, Cole, and her two children, Jones and Charles. Hi, Anne. 

[00:02:14] Anne Pratt: Hi. How are you, Carole?

[00:02:16] Carole Blueweiss: I'm great and it's great to talk with you. Tell me a little bit about your two children. 

[00:02:22] Anne Pratt: My first child is Jones. He is six and a half. He'll be seven in July. And as my youngest son Charles, who just recently turned four, was diagnosed with cerebral palsy around seven months of age. His MRI shows pretty significant global brain damage, especially to his corpus callosum.

[00:02:43] He is what is considered on the gross motor function scale a level five, which means that he is pretty much reliant on a caregiver for pretty much every activity of life. We pick him up. He uses a wheelchair. He is tube fed primarily. He can't communicate with words, per se. He's working on using an eye gaze device.

[00:03:07] But as far as his abilities physically as well, he's, like I said, just turned four and he's still in the process of learning how to roll. So he's pretty behind developmentally and also has the diagnosis of epilepsy. 

[00:03:22] Carole Blueweiss: Can you describe Charlie to me? Like what is he like as a person? 

[00:03:25] Anne Pratt: Charlie is actually very happy despite having all of these challenges. Although he is considered the most severe physically, mentally his abilities are actually pretty surprising. He is extremely intelligent. He loves to be around people. He engages with people. He especially loves playing with his big brother, and they really interact very well together. Loves music. My husband is a musician. He plays guitar and all kinds of other instruments, and Charlie absolutely adores Cole playing music for him.

[00:04:07] He's starting to get to the age now where I believe he's beginning to understand his limitations. He gets really frustrated very easily. So if he's trying to move around to get something that he wants or is trying to explain to us his needs and we don't understand them right away, or he can't get to what he wants right away, he gets pretty upset.

[00:04:31] I think it's because he knows he wants to get there. He knows he wants to tell us this or he wants to tell us that, but he just can't figure out how to get his body to do that task. 

[00:04:43] Carole Blueweiss: So it's a combination of communicating in words that he can't really express and in his body to somehow make the connections of how to physically move the way he wants to move, to get to what he wants to do. 

[00:04:56] Anne Pratt: Yes.

[00:05:00] Carole Blueweiss: If he's nonverbal and he really can't control all of his movements, how do you know that he is getting along well with his brother or that he gets frustrated?

[00:05:11] Anne Pratt: Although he's nonverbal, he does make noises. So noises of excitement, noises of frustration, noises of anger, and just like how when a mother has a newborn, she knows the different cries that they make, right? So it's kind of the same thing. You know, he makes certain noises for different feelings that he's having. So for instance, when he's playing with his brother, he's laughing. He just has these bouts of excitement and he is smiling and he's really engaged with him When he is frustrated, like for instance, when I was saying if he can't get to something or if I don't understand exactly what he's wanting, his facial expressions show me that.

[00:05:47] And his tone in his voice also tells me that, and he kind of, it's almost like he makes these little screams like, oh, I can't believe you don't understand what I'm trying to tell you. And then obviously if he's very upset, then it goes right into the crying. So then I know something's bothering him.

[00:06:05] And another thing is that once your child is a little bit older, and even though they may have not received diagnosis, you know that your life is gonna be different. And the first two weeks of Charlie's life were the hardest for me because I pretty much slept in the NICU room each day. I just don't remember really anybody having a lot of empathy.

[00:06:30] You know? It was like they were there for their job and that's it. And I don't even remember being offered any kind of social services as far as like counseling or any kind of resources. You know, like what do you do next now that you know your child may have some kind of special needs? We don't know yet, though I just felt really lost, you know? 

[00:06:49] And it was really kind of painful to just not know what we were gonna do next. Honestly, even at that point in time, I mean, I had heard of cerebral palsy, but as far as anything really related to it, caring for somebody, nothing. I knew nothing about that. They just don't offer a lot of resources for parents here. I don't know. It might be different somewhere else. 

[00:07:13] Once we actually got the diagnosis, it kind of, things kind of started changing. It was like, now they knew, so now they knew where to point us in, you know, what direction as far as what kind of doctors he was gonna need, what kind of care he was gonna need, what kind of therapies, equipment, all of that kinda stuff. So although getting the diagnosis was painful, it was also kind of a breath of fresh air because we were able to be like, okay, now we know what to do. 

[00:07:43] After Charlie was born and after most special needs kids are born and they're usually put right away into physical therapy, occupational therapy, and speech therapy. When Charlie was three, they have to be three and under for statewide intervention program, early intervention program that provides those services. And so we utilized those for a while and we saw some results with that. I'm glad that we did it. The OT that we had worked with was amazing. We still see a physical therapist once a week, and we also are doing feeding therapy, which is technically a category of speech therapy.

[00:08:20] And we are just working on things like spoon feeding and getting him more comfortable with oral feeds. And then along with that, we're also doing the communication therapy, which is with the eye tracking device. I think that's gonna be completely life changing for him. I mean, he's already shown that he can use it pretty well and so for anybody that doesn't know, it's just a kind of like an iPad that has different icons and a camera tracks his eyes and he can pick and choose what he wants to say using his eyes.

[00:08:49] Carole Blueweiss: Are there any other services that you sought out? 

[00:08:52] Anne Pratt: One of the primary ones that we came across was the Anat Baniel Method, which I actually have become a practitioner myself so that I can work with Charlie on my own. That's probably the biggest one that we've seen the most change with. That's been very helpful for us. Definitely life changing, actually. 

[00:09:11] Before we knew about ABM, we were doing at least one to two therapies every day for five days a week. We had two physical therapists we were working with, an occupational therapist, a speech therapist, water therapy, and hippotherapy. I can only imagine what Charlie was feeling because I myself was completely overwhelmed and I didn't even stop to think like what I was putting him through.

[00:09:33] So water therapy is an interesting one. For Charlie, I didn't really notice a huge difference. He actually didn't really enjoy it as much as I thought he would, but I kept doing it because my friends and everybody were seeing such great results and I'm like, okay, well we'll just keep at it. We'll just keep pushing it.

[00:09:52] And finally I just said, okay enough is enough. You know, he's not enjoying this. And it took me an hour and a half to drive to the place anyway. So I was kind of happy that we discontinued that. We did hippotherapy as well, and we actually did that for quite a while, maybe about six months. The problem with the hippotherapy was that Charlie was pretty young when we attempted it.

[00:10:15] One of his characteristics of his cerebral palsy is that he has very low tone in his core and his head. So he has very bad head control, meaning that he can't really pick up his head on his own. So riding a horse with no head control is actually very difficult. And so the therapist would work pretty hard with him trying to get him to keep his head up.

[00:10:35] Sometimes they'd actually just lay him down on the horse so that he wouldn't have to work so hard. I think he was just too young and I wasn't really seeing any benefit. Most of the time he would be screaming, and I had to come to the conclusion that some of these things just aren't working for us.

[00:10:54] Maybe they will later on, but right now, definitely not. And I was starting to get very overwhelmed with all the driving. It disrupted our schedule. It disrupted his sleep. It disrupted his feedings. So I kind of just had to back it off. I know as a parent with special needs children, you want to do everything and anything that you can for your child, even if that means going to therapies twice a day, five days a week, you know, you just don't know any better.

[00:11:21] But what it comes down to is, and that's fine to go out and try these different things. Different things work for different people, but you will come to know quickly what works for your child and what doesn't. Give them time to just focus on a few things versus ten different things at once because, you know, kind of put yourself in that situation.

[00:11:41] If you had a special need and you were put through all these different therapies consistently throughout the day, five times a week, you would be exhausted. And it's hard to learn. Specifically, very hard for the brain to learn when it's tired and irritated. 

[00:12:00] I mean, it took a while after Charlie was diagnosed for me to feel comfortable taking him out of the house, partly because at that point in his life, he was just always uncomfortable and pretty unhappy, actually. It wasn't until we started ABM and getting his diet right that he was content like he is now. One of his favorite things is to get ABM lessons. 

[00:12:22] Carole Blueweiss: Can you explain what is ABM?

[00:12:24] Anne Pratt: Yes, ABM stands for the Anat Baniel Method. It's actually referred to as ABMN now, which is the Anat Baniel Method of NeuroMovement. A practitioner utilizes and provides movement in a slow and gentle manner, which can give the child an opportunity to actually feel and perceive those particular movements and any differences than what they've been accustomed to feeling. 

[00:12:52] So for instance, kids have a very plastic brain. We all do, but kids more so, and usually giving children an opportunity to feel variations in movement, to feel movements being slowed down can actually give them time to understand and feel differences from what they already know. And it gives them an idea that, hey, I might be able to do something different with this. It's actually a very powerful tool and we have had the greatest success with using ABM over any other modality that we've tried.

[00:13:28] Nine essentials that Anat came up with to help not only the children, but also the parents. They are slow, using variation, movement with attention, subtlety, having enthusiasm, imagination and dreams for them, having flexible goals, which was a really hard one for me, and awareness. Those are all the different essentials that the work is based off of.

[00:13:54] Carole Blueweiss: And which one is the one that helps you the most? 

[00:13:57] Anne Pratt: Awareness. Having awareness is absolutely key for us because there would be so many times that I would go through our daily routines and just not even think about how I was talking to, handling Charlie, and I think it really affected him negatively. Now that I have more awareness about myself and about him, I'm able to meet him more where he's at each day.

[00:14:27] For example, when I go to pick him up off the floor to go get him changed for the day, I don't just simply grab and pick him straight up off the floor. I think about how I'm gonna pick him up off the floor, how I'm gonna use my body to pick him up off the floor. It's all of those little things just added together. Just awareness is very important.

[00:14:45] And slow. Slow is also very important for Charlie because typically kids with cerebral palsy that are spastic, if you move them quickly, it just makes them way more spastic. So doing things with Charlie is very, very slow. There's slow, and then there's even more slow for him.

[00:15:02] So when I do things with him, I don't do them quickly at all. I'm kind of the opposite of slow myself. I like to get stuff done. I like stuff to be organized, and I just really had to like slow myself down and able to meet Charlie where he was, because if you do things fast with him, he reacts completely different.

[00:15:23] He gets more spastic. He gets upset more easily. So when we move around, for instance, like if I go to pick him up off the floor, I take my time. I listen to where he is and I do it in a manner that is comfortable for him versus just yanking him off the floor. And then also just attention. Listening and watching his cues and not necessarily what I wanted from him. That made a huge difference. I work with him with the essentials each day. It's really taught me to incorporate things that I would've never thought to incorporate into his daily life. 

[00:15:59] For the most part, all of the doctors and nurses that we've worked with have been fantastic. At our local children's hospital, Riley, they have a clinic designated for children with cerebral palsy called CP Clinic.

[00:16:11] When we go, you're usually gonna see at least three doctors. The first one is neurology. The second one is developmental pediatrician, and the third one is physiatry, which is also like a physical medicine and rehab doctor. He also has a pulmonologist that we also have a GI specialist and a functional medicine specialist.

[00:16:34] The pulmonology and the GI and the functional medicine are all separate entities. A functional medicine doctor, which is a little bit different than a traditional doctor, what they do is they tend to focus on what are the root causes of the conditions and not just treating symptoms. So essentially they break down all the different interactions between your environment, genetics, lifestyle. They take that information and develop a personalized approach to address your condition. So that's actually been really helpful for Charlie to understand his diet, how it influences his GI discomfort and his food sensitivities, and things that I had no idea about. So that's also been very helpful for me and for him. 

[00:17:20] Carole Blueweiss: So it sounds like with all these people, they don't necessarily talk to each other. You're the conductor of Charlie's symphony. 

[00:17:27] Anne Pratt: Yes. No, there's really not any besides his main doctors at the hospital. Like I said, the neurologist and the physiatry, they all work together. However, the alternative therapies that we seek out individually usually do not talk to one another. So I kind of have to reiterate to each one, okay, we've tried this. This is what we're doing right now. You know, taking into account so that they're all on the same page. 

[00:17:54] Carole Blueweiss: What is the difference between, let's say, a functional medicine doctor and a nutritionist?

[00:17:59] Anne Pratt: Talking about a functional medicine doctor, they're gonna look more at what's actually causing your symptoms. And it's not just based on nutrition. There's other things they look at. So how well you sleep, your exercise, your moods, your anything and everything. It's kind of compiled together through a functional medicine doctor, whereas in my experience, actually most nutritionists just wanna focus on how many calories you can get in each day to make sure that they're gaining weight, and they'll do that by any means necessary. Whether that's giving them substances that are full of sugar or calories. 

[00:18:35] The functional medicine aspect has been way more helpful for me because again, they're looking at not only the symptoms that he's having, but why. We've recently found out that he's had some pretty severe intolerances to lactose, which isn't surprising, and a few other things that the nutritionist had actually recommended we use.

[00:18:59] Carole Blueweiss: What is the difference between physical therapy and ABM? 

[00:19:02] Anne Pratt: The goals are pretty much similar. I mean, we want the child to move better. We want them to be able to have a better quality of life. But the actual methods is a little bit different. So in my experience with Charlie and using a physical therapist, most of the time, it has been very uncomfortable for him.

[00:19:22] He is primarily spastic, so his arms and his legs are pretty tight. So one of the things they had us doing was to actually stretch his arms and legs out completely, which is definitely going against his system, holding it and counting, and he would just cry. He would just scream, and I don't blame him. Now, we do work with a physical therapist now who is more in tune with how ABM works, and she is very good at knowing Charlie's limitations and not forcing him to do things that he's not ready for.

[00:19:55] So a lot of the times, physical therapists just wanna get to that end goal. They don't really think about anything else other than that. And again, this is just in my experience. There's many physical therapists out there that have different goals. And then for ABM, the biggest primary difference is that they meet the child where they are.

[00:20:14] Even in that specific day, if we go for a group of lessons, the practitioner may do certain things that day. And then the next day can do completely different things. You know, you go with the child, you do what you see with the child's doing that day, and you work with him in that aspect. Versus each day we have to stretch your arm, 30 seconds on this side, 30 seconds on that side. With ABM, he's never been upset, never cried. He just feels more safe.

[00:20:43] Carole Blueweiss: Are there any other methods or therapies or? 

[00:20:46] Anne Pratt: So, there are, and many of them we actually haven't tried yet. And, you know, I don't know if we ever will, but some of the more common ones that you can come across are stem cell therapy, hyperbaric oxygen chamber therapy, MNRI therapy, which is a method based on integrating your primitive reflexes.

[00:21:10] A lot of kids with special needs, specifically CP, autism, have issues with sensory integration, and this method actually helps to get the body to understand how to integrate those primitive reflexes. And usually those primitive reflexes are very reactive and they inhibit a lot of movement and learning in children with special needs. So that's a new one to me I'm actually learning more about.

[00:21:40] There are other things out there and a lot of doctors and hospitals just are not aware of those, I believe. I don't think it's the fact that they just, they don't believe in them. I just, there's just such a lack of awareness and I sometimes kind of beat myself up for all the times that I think about where Charlie would be now if only we had started some of these therapies sooner. Right now, it's just really up to the parents, and if they're lucky enough to know somebody or be introduced to these alternative therapies, that's great. But most of us aren't, and we kind of have to take all this time and energy to research them. And it really wasn't until Charlie was about a year and a half that I was able to come across a lot of these different modalities and utilize them. 

[00:22:25] Carole Blueweiss: So, that brings us, I think, to my last question, although I could sit here for a long time and ask you a lot of questions, and maybe we'll have to just do a part two and go more deeply into some. If you were to share four pieces of advice to parents who have just learned that they have a child with special needs. 

[00:22:41] Anne Pratt: Absolutely. Yeah. The first would be to listen to your heart, listen to your intuition. If you don't let doctors or anybody tell you what they think is right for your child, you know what's right for your child. So don't fall into that pit of being told how you should manage your child's diagnosis, because there are options and I'm very grateful that I was able to find those options.

[00:23:06] Second would be to find a support group. Usually you can find them on Facebook, online discussion boards. I actually ended up finding one based specifically for moms with children of cerebral palsy. I found this one be particularly helpful because they have had so many experiences. Most of the women in the group are a little bit older than I am, and so their kids are a little bit older, so it's been really helpful for me to ask questions about things like the future. 

[00:23:34] What do you do once they get to school age? How do you deal with changing them in a public place when they're too big to be on a changing table? I mean, all these questions that just flood your mind. It's really great to get in connection with people that have been there and been through it. So definitely finding a good support group is very key, and it's also a great place to go to ask advice, to let off steam, to get a different perspective on things. The next one would be to do research. 

[00:24:01] It's hard sometimes because it's time consuming, but the world is full of options. There are so many different modalities, therapies. All kinds of things that have helped people that are just not this traditional therapies that you'll be assigned. You know, usually the physical, occupational, speech. Even just finding a blog or something that you can read about other people that have gone through the process and what they have found that had helped their children. That was really helpful for me as well.

[00:24:29] And the third is, I'm sorry, the fourth. The fourth is to take care of yourself. 

[00:24:35] Carole Blueweiss: And what do you do to take care of yourself? 

[00:24:36] Anne Pratt: The first thing is to find activities that you can do together. One of my biggest activities that I love to do is go running. Running has always been my way of dealing with emotional distress or just having time to think about things. So I take Charlie with me. I just push him and he loves it, so it's something that I'm enjoying and then he's getting outside. He's getting to look around. It's a blast. So if you can find things that both of you can enjoy. I like drawing. I like painting. So we all get together and lay on the floor. 

[00:25:09] I've got specialized markers and things that Charlie can use. You know, I have to help him move it, but he enjoys it. So that's another thing that we do. And, you know, that's just like family time, right? It's just like spending time with a typical child. I also like to crochet. I have always kind of had this knack for making things. That kind of fulfills that part of my character and gives me time to just also relax and enjoy something that I like to do.

[00:25:36] Even just taking five minutes and just walking around the block, or you know, going out and sitting out on the front porch and just taking a breather. Those are all important. That was really hard for me to do because I'm a nurturing kind of person, so I will fix everybody else's problems first before mine.

[00:25:54] I've come to realize that can't be the way that it has to be, because if I'm not healthy, then my kids aren't healthy. Right? So take time for yourself. Whatever your extracurricular activities may be, find time for those. It keeps your sanity. Talk with your family. Talk with your friends. Some people I know don't have those options.

[00:26:14] That's where a support group could come in handy. Don't shut yourself in for months. That's what I did. I was too afraid to even go outside with Charlie. It just was miserable. So find those resources. Give yourself time. Give yourself patience, and give yourself love. 

[00:26:29] Carole Blueweiss: That's great. That applies for everybody, especially at this time. What is your advice to parents on how to get information? 

[00:26:39] Anne Pratt: First of all, I want to say don't be afraid to ask questions. I think that was my biggest problem with Charlie along his journey is I just kind of accepted things as they were. Even though in my heart I knew that I needed more information or I wanted a certain test, or I wanted this or that. I just kind of went with the flow of things and I wish I would have advocated a little bit more for what I believed was best for Charlie. Finding a good team of doctors and nurses is important. It took us a while to narrow down to the people that we use now, just because there were quite a few doctors that I just did not agree with, and I did not want them to be part of Charlie's team. And it was clear that they didn't wanna be part of Charlie's team. 

[00:27:26] Carole Blueweiss: What do you wish you knew then that you know now about raising a child with special needs? 

[00:27:33] Anne Pratt: I wish I would've not been afraid to ask those questions, to demand testing. And if you disagree with doctors, make it known. Most of us go through life trusting our doctors, right? Because they go to school for so long, they know it all right? So we rarely question their motives or decisions. As a parent with special needs, you absolutely have to question their motives and decisions because sometimes they don't know it all and they don't know what's best. You are the one that knows what's best for your own child.

[00:28:03] Another thing I wish I would've known is that cerebral palsy is not a one size fits all diagnosis. So after he was diagnosed with CP, I did a lot of research. I did a lot of reading. I did a lot of reading about other people's experiences and I would read stories of other children, and I remember just times that I would become incredibly depressed because Charlie was still so far behind developmentally compared to these other children.

[00:28:34] Again, he has the most severe type of CP and it kind of took me a while to learn that, that he is different and he is going to achieve things in his own time and that it won't be the same as others, even if they do have the same diagnosis. Every child is different. And you have to just understand that. It's really hard when you're a parent and you want to know more and you want to understand things and you come across other people who are going through the same journey, but it's not quite the same as yours.

[00:29:06] And you wonder, well, what's wrong with my son? Why isn't he making these gains? He has the same diagnosis as this other child. Why are they so far ahead? And so you just kind of have to realize that your child is unique and that with the child with special needs, especially, changes are gonna just take time.

[00:29:29] Carole Blueweiss: How do you see other parents who have either typical children or children with special needs? How do they interact with you and with Charlie? What has been your experience? 

[00:29:39] Anne Pratt: Well, for the most part it's been positive. Most of the time when we come across children, if we go on walks or something like that, usually other children wanna come up and they say hi and they ask questions, which is perfect. That's what I want for him and that's what I want for me. But there have been definitely times where we've been in situations where you can just tell the parents are not comfortable. There's a little bit of fear or ignorance on their part. Sometimes I've had children kind of wander up to him, like if he's on a blanket and he's hooked up to his feeding tube, and the kids wanna know, well, what's that?

[00:30:14] You know, what's coming out of his stomach there? And the parents will come up and swoop them right away and won't even say one word to me and walk away. And at first when this happened, I was really hurt because it made me feel like my child was some kind of a freak, and what I've come to realize is that's probably not the case.

[00:30:35] Like I said, it's more or less if a parent is not familiar with seeing a child with special needs, it's kind of scary and they maybe just aren't sure how to approach it or ask questions. I've been a little bit more accepting of that and not letting it bother me as much.

[00:30:54] Carole Blueweiss: Do you try to look for classes that are for children with special needs, or do you look for classes that are just music classes that you think he would enjoy? How do you make those decisions? 

[00:31:05] Anne Pratt: Most of the time, they've been just for the general public, so it's not necessarily geared towards children with special needs. For instance, at our local library, they have a reading day where one of the librarians sits down, reads a book to the children, and then there's an activity afterwards where the kids get to play and interact with one another.

[00:31:27] That was actually one of the harder experiences for me, kind of going back to that fear that I think some of the parents there were like, oh, he's so fragile. You know, we don't want our kids around him because we don't want them to hurt him, or we don't know how to ask the right questions. So that actually was something I gave up on just because it was kind of hard for me to deal with that.

[00:31:52] But since then, I've found through my support groups, we sometimes just have playdates where the kids get together and just interact with one another the way that they do. And I think that's been more beneficial for both of us actually, because the parents understand and they know because they have a child with special needs. And so it's more accepted. 

[00:32:16] Carole Blueweiss: You've decided it's actually more comforting and easier to be in a group with other parents that have children with special needs. And for Charlie to be with those kids. 

[00:32:25] Anne Pratt: I would say for the most part, yes, but I don't want it to be that way. I have kind of gone out of my way to make sure that Charlie is involved in activities that typical children would normally participate in. So for instance, at his school, even though it's a school that's developed for kids who have developmental disorders, Charlie is still by far the most developmentally delayed, the most disabled. I hate to use that word, but it's true. So I've had to work with them even just to make sure that their activities that they're doing and the things that the children normally get to participate in are tailored so that Charlie can also participate.

[00:33:12] Carole Blueweiss: In an ideal world, you go to the library or you go to a class where there's children that are typical and parents that have no experience with children with special needs. How would you ideally like them to approach Charlie? Or approach you? 

[00:33:28] Anne Pratt: Well, it's kind of a hard question to answer. Ideally, I would like them to engage me, you know, ask questions and not have that fear that if they come close that they're somehow gonna hurt Charlie or I don't know. I don't know what's going through their heads. So I just, and I think some of that is just pure ignorance on the part of the parents, but also of society.

[00:33:57] I mean, we as a society just don't really take a lot of time in explaining or showing that there are actually millions of people out there that have some sort of special needs. And so when people are put in a situation with somebody with a special need, they don't know how to react. It's like shock value, and so they just, you know, they act on instinct and that usually that instinct is to back away because they're uncomfortable. There are so many of us out there that have kids with special needs, and we're all around you. You may not know it, but don't be afraid to reach out to somebody. 

[00:34:39] Carole Blueweiss: Well, thanks Anne. That was all very inspiring and informative and I learned a lot. 

[00:34:44] Anne Pratt: I just want to say thank you for having me. I appreciate being able to share my story with everybody. I wish I would've had access to something like three years ago, right? I mean, just to hear somebody's voice saying the things that I am going through and have been through would be so helpful. I appreciate you giving me this time to talk. 

[00:35:06] Carole Blueweiss: Thank you, Anne, for sitting with me today and sharing all your amazing insights into what it's like for you to raise a boy like Charlie and what it's like for Charlie to be Charlie. It's not often that healthcare workers or other parents and friends and even other providers can really get to know the people that they are trying to help. And so I am grateful that we had this time together where you really gave us so much information and so much insight into what has worked for you and Charlie and what hasn't worked. And I just hope there's a lot of parents out there and healthcare workers listening, and I'm sure that they are all grateful for all the generous stories that you shared today. 

[00:35:50] Anne's website and contact information will be posted in the show notes along with all the links to the modalities that Anne mentioned. I'm Carole Blueweiss. Thank you for listening, and please come back and join us as I interview more parents with many special stories and amazing insights into what it's like to raise a child who is unique and extraordinary. Bye for now.