--- title: "Redefining Normal" episode: 151 date: 2025-03-13 guest: "Crystal Jordan" canonical: https://inclusionbites.co.uk/podcast/151-redefining-normal audio: https://cdn.seech.uk/podcast/episodes/ibs-151/audio.mp3 --- # Redefining Normal Joanne Lockwood is joined by autism advocate and author Crystal Jordan for a conversation about what it really means to “redefine normal” through the lens of autism and neurodiversity. Crystal shares how her son Zachariah’s diagnosis shaped her mission to amplify unheard voices, educate others, and push for environments where autistic people are treated with dignity and supported to thrive. They discuss the practical realities of raising a nonverbal autistic child, including navigating multiple therapies, dealing with long waits for services, and the emotional load of parenting while advocating. Crystal explains why she often enters schools and service settings in “advocate mode,” and why families shouldn’t have to fight so hard to access what their children are entitled to. The episode also explores long-term inclusion: preparing children for independence, the gaps in support once autistic young people become adults, and the need for employers and institutions to make work and life accessible to non-speaking and higher-support-needs individuals. Along the way, Crystal shares everyday moments that reveal Zachariah’s personality and progress, and offers concrete advice on how friends and communities can support parents with understanding, patience, and practical help. ## Chapters - 00:00 — Introduction and Welcome - 05:14 — Perception Through Personal Lens - 07:56 — Discovering Autism: A Life-Changing Moment - 11:25 — Pregnancy, Uncertainty, and Attachment - 16:21 — Advocacy for Fair Treatment - 17:40 — "Advocating for Special Needs Students" - 20:15 — Support for Autistic Adults Needed - 26:09 — Finding Voice Without Words - 27:49 — Support for Adults with Down Syndrome - 31:22 — Raising Independent Children - 35:36 — Finding Community for Autism Support - 37:31 — Parenting Challenges with Autistic Children - 41:56 — IEP Focus: Child-Specific SMART Goals - 46:12 — Parental Struggles with Dyslexia Recognition - 46:44 — Understanding Dyslexia Diagnosis - 52:14 — Broadening Understanding Beyond Echo Chambers - 55:14 — Join the Inclusion Journey ## Key takeaways - The transformation from being a mother to becoming a staunch advocate for an autistic child. - Understanding the concept of "normal" from a neurodiverse perspective. - The importance and impact of an Individualized Education Program (IEP) for children with special needs. - Overcoming challenges and the importance of patience and persistence in securing appropriate services and support. - The significance of building a supportive community for parents of autistic children. - The crucial role of job security and independence for neurodiverse individuals in adulthood. - Practical ways for friends and neighbours to provide support and understanding for families with autistic members. ## FAQs ### What inspired Crystal Jordan to become an autism advocate? Crystal Jordan became an autism advocate because of her son, Zachariah, who was diagnosed with autism at a young age. She wanted to create a world where he could grow up experiencing inclusion and acceptance, have job opportunities, and live a fulfilling life. Her advocacy efforts are driven by her goal to amplify unheard voices and foster acceptance for people with neurodiversity through storytelling and resilience (Transcript: [00:03:13]). ### What is the main purpose of Zachariah’s World? Zachariah's World is a for-profit business founded by Crystal Jordan. It serves as a hub for her books and educational materials about autism and inclusion. The brand offers apparel, books, and other resources aimed at educating and supporting the autistic community and their families. It focuses on raising awareness and promoting neurodiversity (Transcript: [00:33:27]). ### How does Crystal Jordan differentiate between being a mom and an advocate? Crystal Jordan separates her role as a mother from being an advocate to effectively support her son's needs. As an advocate, she is firm and logical, focusing on securing the best possible services and accommodations for Zachariah. This approach ensures she can challenge and demand appropriate support without the emotional involvement that often accompanies parenting (Transcript: [00:14:45]). ### What are some of the key challenges Crystal faces as a parent of an autistic child? Crystal faces numerous challenges, including managing multiple therapies and services for Zachariah, such as ABA, speech therapy, and occupational therapy. As a single parent, coordinating these services on her own can be overwhelming. She also highlights the importance of mental health, noting that sometimes prioritizing her well-being involves reducing the number of services to avoid burnout (Transcript: [00:12:30]). ### Why does Crystal Jordan push for individualized education plans (IEPs)? Crystal advocates for IEPs because they provide tailored educational strategies and accommodations specific to each child's unique needs. An IEP is a legal contract that outlines the goals and services necessary to support a child's educational development. For Zachariah, it includes goals like learning to write his name and receiving necessary therapies at school (Transcript: [00:43:32]). ### How does Zachariah demonstrate his independence according to Crystal? Crystal is proud of the small yet significant steps Zachariah has taken towards independence. For example, he has started dressing himself, putting on his shoes, and preparing to leave the house without prompts. These actions, though simple, are milestones demonstrating his growing ability to perform daily tasks independently (Transcript: [00:48:25]). ## Transcript Joanne Lockwood: Welcome to Inclusion Bites, your sanctuary for bold conversations that spark change. I'm Joanne Lockwood, your guide on this journey of exploration into the heart of inclusion, belonging, and societal transformation. Ever wondered what it truly takes to create a world where everyone not only belongs but thrives? You're not alone. Join me as we uncover the unseen, challenge the status quo, and share stories that resonate deep within. Ready to dive in? Whether you're sipping your morning coffee or winding down after a long day, let's connect, reflect, and inspire action together. Don't forget, you can be part of the conversation too. Reach out to jo.lockwood@seechangehappen.co.uk to share your insights or to join me on the show. So adjust your earbuds and settle in. It's time to ignite the spark of inclusion with Inclusion Bites. Today is episode 151 with the title, which redefining normal. And I have the absolute honor and privilege to welcome Crystal Jordan. Crystal is an autism advocate, author, philanthropist, dedicated to raising awareness and empowering families to embrace neurodiversity. When I asked Crystal to describe her superpower, she said, it is her ability to amplify unheard voices and foster inclusion through advocacy, storytelling, and resilience. Hello, Crystal. Welcome to the show. Crystal Jordan: First off, I'm so happy to be here Joanne Lockwood: We were chatting just now before we went live, and I understand you're based in Atlanta, Georgia in the US? Yes. I Crystal Jordan: am based in Atlanta, Georgia, and it is cold here. It's too cold here. Yeah. Joanne Lockwood: I always thought Atlanta, that part of America was kind of like hot, humid, and sticky all year round, but you've had a snow warning, haven't you? Yes. And, actually, most of our kids Crystal Jordan: are out of school today. Because it's so cold, we're out they're out of school. We all do cold in the south. No. Joanne Lockwood: So this is really unusual temperature for January, is it? Yes. It Crystal Jordan: is. Wow. Hey. Who said Joanne Lockwood: climate change is not happening? It's our climate. We've definitely got some climate change there, haven't we? Oh my god. I hate it. It's so cold. That's why I have Crystal Jordan: all this winter dress because I'm freezing. Yeah. Well Joanne Lockwood: well, we'll get talking, and we'll warm ourselves up in the conversation. How about that? That's that deal? I love that. So, Crystal, your journey as an autism advocate, and you also founded Zacharias World, which you could tell us more about, is really really inspiring from our conversations. How would you turn your personal experiences into a mission for inclusion and empowerment? What inspired you for that? So what inspired me behind any Crystal Jordan: brand I'm doing dealing with autism is my son. He was diagnosed with autism when he was 2 years old. And since he's been 3, that's when I started writing books and doing so much. But I didn't call myself a advocate until people kept calling me a advocate. And I said, well, I guess I'm a advocate. So he's the reason behind everything that I'm doing because I want to create a world where he can get jobs when he's older. He can go to college. He can have family, and people understand, yes, he's autistic, but he's more to his disability. I don't want people to look at autistic people and be like, oh my god. They're autistic. No. Embrace them for who they are. Treat them like a human being, and let's hire them and make sure our companies have training. Joanne Lockwood: I I titled this episode, redefining normal. Who decides what is normal? Zacharias, he's got his own normal, hasn't he? He's got his own personality years over years. But as a society, we wanna put a label on someone. Yeah. The autism label. Yes. It helps provide support for them. But what why why do we need to divide people up in this way? Crystal Jordan: So for me, I actually do not use the word normal. I feel like for me, it's a physicist. Not the not the name that you put you you titled for the podcast. I love the name you titled for the podcast because we can dive deeper into the conversation. What is normal? So my son is atypical, and I look at normal like this. You cook your chicken one way. I cook my chicken one way. Now that's normal to you, but that's not normal to me. We have to look at people in the same way. We can be we go for example, I can be from the UK, and you can be from the UK. But we still have 2 different ways of thinking and looking, and that's to me, that is normal. So yes. Joanne Lockwood: Yeah. So we're all normal in our own head, aren't we? We all we all think in the same eye. I often talk to people and I've talked to people about neurodiversity in the past. You see the world through your own lens, through your own sense of self. And if if your IQ is low or you're high, the world is referenced by you. So presumably, Zachariah just sees the world around him as the world around him. He doesn't have any different definition of who he is than he is, who he's always been, isn't he? Right. And I I feel like sometimes us Crystal Jordan: as people, we we overlook what normal is like. So I feel like when you see people with disabilities, people just treat them differently, and it shouldn't even be a thing. So Joanne Lockwood: how did, you you first become aware of Zach's superpower, if you like, his autism? How did you become aware of that? What led you to believe that he was, atypical, to use your words? So Is that Zach in the background? He is back in the background. To answer your question, I did Crystal Jordan: not know my son was autistic. Looking back, it was science there, but I didn't know what autism was. I didn't know what he was doing, of course. So I started to learn, but his doctor at 8 months told me that, hey, I think I think Zachary is autistic. His doctor is a pediatrician and his doctor has an autistic son. She's asked, he saw us. So then after that, my best friend, she said it too. And then my son's dad mom said it as well. And I still didn't believe him at that this point. And I'm like, I don't think my son is autistic. But when he turned because he was hitting all his milestones, but when he turned 1, that's when I thought to pay attention. Like, he's not he wasn't walking at 1 yet. So I said, okay. That's a delay. Not put it back. And I said, that's not the delay. Sock for y'all. Then I also, when he turned 2, he wasn't talking. He, he, he didn't have certain words in his vocabulary. He wasn't out 200 words in your vocabulary at the age of 2 years old, but he didn't have that. So for me, that was concerning, and that was like, okay. I think my child may be autistic. So I need to make sure that I figured it out. Oh, you're having a sing song in the background there, Joanne Lockwood: isn't he? He he is having the time of his life. He right now, with Crystal Jordan: the audience, what you guys are hearing, you're hearing my son stem, and he's vocally stemming. There's something he cannot help. Well, he's telling to be quiet, and he'll go back right back to it. So that's what you're hearing now. But he was diagnosed. I remember he was active. I remember going to the doctor, his doctor, and then a walk in. And the crazy thing about it, she normally is too busy to take walk ins, but she knew that I was ready at this point to realize that, hey. My son may be autistic. She riddled my referrals to Market Center in Atlanta, Georgia, and it was the best decision ever because Market Center is amazing. He was diagnosed on a Friday, and I took him to the fair. Never forget. I cried at the fair. I grieved what I thought she was gonna be. And that Monday, I was calling speech, a b a l t, and I remember a provider saying your son was just diagnosed. Your son was just diagnosed. And here you are calling to get him services. That's amazing. And I know a lot of PRs are not like me, but I knew in my head, my auntie was a special need teacher. I knew I had to be his advocate. I knew I had to get for him to get where I want him to be in life. I have to push that and I have to be that voice because my son is nonverbal. He does not have he's not vocal like you and I. So is it anyone's listening. Zach just came on on the video here, Joanne Lockwood: and he he gave you a big hug and a kiss, didn't he? And then nipped off again. So he's such a cutie. But he has all these terms banned around autism, autistic, neurodiverse, ADHD. Can you explain those different terms just for people who are listening? So I so I can understand them as well. So all of those terms you just stated is neurodiversity. Crystal Jordan: So pretty much the best way I can describe it is they just all think differently. Look at, look at the world differently. And it, but for me, it's nothing wrong with them because they are awesome just the way they are. We just have to learn to adapt to them and understand their way of learning. But it's just one big umbrella of neurodiversity, and autism falls right under there. I get I get it. And Joanne Lockwood: Zach's particular variety, if you want, of of autism is being nonverbal. He has autism and ADM. So he has attention deficit disorder as well. So he's hyper and, intense. Crystal Jordan: Super super hyper. Like, it is intense. So right now, he's quiet in a sense, but he is hyper. So what what challenges does that bring Joanne Lockwood: you as a parent? You know, you you obviously when you're pregnant, you're planning your family, you're thinking about having a child, and then you have to learn how, as a parent, you you can adapt to an autistic child. What were the challenges that you find in that adaptation? You know what's Crystal Jordan: crazy? I love to be super transparent in interviews. When I was pregnant, I was depressed. I was not looking forward to my pregnancy. When I was pregnant, my Zachariah was a threatening miscarriage. So I was high risk. A threatening miscarriage is before you have a miscarriage. So that's before you lose the baby. But God was fortunate enough to spare him because he's here today. So I did not really plan anything he was born because I wasn't sure if he was gonna go live because they wasn't sure was he gonna come out as stillborn or come out with a disability. They even asked I would terminate my pregnancy. Zack's joining in again if you're listening in. Joanne Lockwood: Yeah. He wants some attention. He he's like, no. I wanna be here. Crystal Jordan: I'm looking at him like he's he's like this with the tablet. But, he Joanne Lockwood: Hi, Zach. He he's so funny. Crystal Jordan: But that was part of my pregnancy. I didn't get attached to my child until he came out on my womb, and I put him on me. So just to be super transparent, I did I was not attached to my child while I was pregnant, so I did not plan anything for him because my midwife was telling me that, Hey, he may come out stillborn. He may come out with disability. So we don't, you know, I, I just wasn't sure if I was gonna have a healthy baby, so I didn't plan. To answer that question. And I know you like, wow, that is, that is very true. How I navigate having an autistic child. I'm not going to lie. I have, I have challenges. Oops. Sometimes I hate it because I remember it was a point when he had ABA, he has speech, he had OT and he had feeding therapy and then he had tennis. So that's 5 different things I had to navigate to take him to. Plus I'm a single mom, me and his dad are not together. So doing all of this just will just by crystal and crystal alone is a lot. Like, yes, my parents are my village. My parents help me, help me with my child, but they are not taking him to these services because that's me. He like, it's a lot. And I navigate it now. It's like easy breezy, but I used to be overwhelmed and stressed. Wow. Like, it's too much, but I came up with a decision that works. I honestly stopped some services to work on my mental health because it was just too much. He really I mean, he he sounds so adorable just listening to Joanne Lockwood: him. I I I presume he's quite amfool sometimes as well. His autism with ADHD must make mean that you have to have patience for Saint. We've he he's not gonna conform to societal's expectations around being quiet, sitting still. I mean, it's actually a pleasure to have Zac joining into the call. You know, we're why why should we exclude him here? His voice is there, so let's bring him in. Oh, there he is. I can see him again. Yeah. So what what was the hardest thing you had to get to learn and adapt to? Crystal Jordan: That is an amazing question. So you just taught me. What was the hardest thing I had to adapt to? Okay. The hardest thing I had to adapt to is my, the way I navigate. No. I treat my son like he's my client. So when, when I go into the school, I'm his advocate first. I'm not his mom. When I give him services, I tell people out of service providers. I'm his I'm his advocate. Yes. I'm his mom on paper, but I'm telling you right now, I'm an advocate, and I'm not I don't play with him. So the hardest part is we cutting off the mom and me being an advocate. But it had actually, it's been so easy because with me being the advocate first, I've gotten him so much, especially in the school system. I got him so much. It's amazing how much I got him. So let me just clarify what what's Joanne Lockwood: going through my head here. So a mom, you're emotionally connected. You're kind of involved with it. Advocate. You're logical. You're demanding. You're ensuring you're getting the best. And that that's kind of the difference is that as a mom, you may think I won't push too hard or all these kind of things. So by going advocate first, you're you're challenging and making sure people are listening to you to deliver the right things. Do I interpret that right? You are a 100% Crystal Jordan: right. That's exactly how I am in in any settings. When when I'm an advocate, it's no feelings. This is I'm gonna give you the loan. I'm gonna break down the ethic codes. We're going to to discuss his goals. We're gonna discuss for ABA. We're gonna discuss his programs. Are they appropriate for him? Are they appropriate for what I want for him as a adult? That is the side you'll give me. The mom is like, oh, okay. No. No. That's that's so this year well, where is this 125? Last year, they, people didn't get the mom's side of me. They got the advocate side of me. And like when my son's teacher, I love her. She gets both. Cause I, I turn it on and off on field trips. I'm a or I come in to discuss my son. He's advocate. So she sees both. I turn it on and off. It's it's it's it's, you know, or it's it's easy. I turn it on and off all the time. Yeah. I I I Joanne Lockwood: think I haven't kept I'm not nice. I'm not nice. I know that. Crystal Jordan: And when I say I'm not nice, I'm very firm. So if I know what I'm talking about, which most of the time I do, I'm going to address it. I'm gonna be, I'm gonna be very, very, very affirming and firm. And like right now, we deal with a situation. Well, not anymore because I already addressed it. We was working with this company and this company was terrible and they did not get the nice advocate. They got the advocate that knew everything, and that was they ended up getting to see like, the regional director involved because it it was so bad. So it's two sides to my advocate side when he's calling my son. And after when I started treatment, I know I do the same thing for a client. I'm very serious about people treating them how they should be treated, and they're getting the services they should get. Yeah. I I I hear what you're saying there. And I've just turned 60. Joanne Lockwood: My parents are are quite old now. My wife's parents are quite old. And we've we've learned that we need to go to advocate mode to engage with health care professionals, care professionals, whatever it may be. Because if you go in as as a daughter, you go in as a as a family member, and you know they gotta push back or ignore you or not talk to you. So you have to be brutally firm with people in order to get not not rude, but just really, really firm. You have to know what you're gonna get. Because we've been through so many situations where we come away going, they didn't listen or we didn't get something or we need to add we need to get more out of this. And you learn very quickly that unless you advocate and you're firm with it and keep on it, people will not give you the respect or the service you need. And I think that's Crystal Jordan: unfortunate when we really like dive into the word advocate. So I have a best friend who's and I'm going to advocate for her, who is my godson. What is funny is when you use the word advocate, it's like things change. It's like, oh, they got to advocate. Let me get my stuff together. And I think that's unfortunate. Why not? When it comes to our special needs kids, our ADHD kids, our near diverse kids, why not? When when that kid get enrolled, why not have a welcome pamphlet talking about the law, talking about what you need as a parent, talking about resources, talking about things that will help you navigate in the school system to better your kid's life in longevity outside of school, inside of even in the educational realm. What you know, why not? In high school, it should be a pathway. Hey. Your kid is neurodiverse and your kid's autistic. You got a list of colleges in United States that your kid can go to. Why not why not put these programs in place? Why does we need someone like me who is passionate about what I'm talking about to get these things in place. Like for me, my son, I know when he get to high school, it'll mean him gonna go a different route. And I'm figuring that out, what we're gonna do. If he wanna go to college, I gotta set up his IEP a different way, and you transition him to something else. Because I when I say I'm thinking ahead, I'm thinking ahead. So it's not perfect today. And we we Joanne Lockwood: are 2025, and the world is moving on a lot. Yeah. We're doing a lot of thinking about a lot of stuff, and services are getting more and more experience. But if you wind the clock back, I don't know, 10, 20, 30 years, Zach's life would have been so much different. You you would not have had the support that you get now. Even though even though it's imperfect today, it's evolved quite a bit. So what are the key things that they are getting right? I Crystal Jordan: would say the key thing that Oxy is getting right, people get it right I hear this a lot. It's a spike in autism. Right? I think and I and this is this is just my personal opinion, so do not let listeners, please don't get mad at me. I'm happy to see that parents are now aware and they're getting their kids tested. And I'm happy to see that as more kids like my son getting tested and again, their diagnosis and parents are doing what they need to do to make sure that they raise their child to be an awesome little human that they're going to be. So a lot of people, it's a myth. I mean, a lot of people are like, oh, they're going to outgrow it. You don't outgrow autism. Now, one thing I wish that the world got right, United States, UK, I wish we have more resources that was, quicker. Instead of waiting having wait list, I wish that it wasn't an age out period, that when our kids turn 18 or 21, they're aged out of the program. I wish it was more programs and more nonprofits geared towards autistic adults or neurotypical adults because they need help. Because, unfortunately, the reality is their parents, me, I'm not gonna be here forever. So when I leave, what is gonna be here to to push him to be the best Zachariah or the best Mariah or the best Sarah or the best kid they could be? And those are just random names I'm saying. But besides that, those are random names, because these are conversations that we need to have at the government office. These are bills that we need to pass. There's so many things that we have to do as a society to make sure our, other adults are adults who have special needs or taken care of and not taken advantage of. There's not a drain on resources there, Joanne Lockwood: whether it's the legislature legislators, the, the healthcare professionals, society, whatever. You know, we've got obesity crisis. We've got we just come out of a pandemic, a global pandemic. As you as you mentioned, we're seeing a spike in autism and neurodiversity, diagnosis. It's a health care profession struggling to keep up. Are are we are we too demanding? I do think it's a Crystal Jordan: struggle to keep up, but I I also think it's not really a spike. It's really so when you look at the data, years ago, it's 1 out of a 100 and 60 6 kids that were diagnosed with autism. When I wrote my book, just like you, it was 1 out of 54 kids diagnosed with autism. As of 2024, according to the CDC, is 1 out of 36 kids diagnosed with autism. Right? I think now is more awareness, and my focus is acceptance and inclusion of that. But when it comes to the resources, the speech, o o t, it's too many diagnosis and not enough providers. Too many diagnosis, not enough services. My son has been on his wait list for speech for almost a year. Nope. It'd be yeah. It'd be almost a year, like 2 months. That is ridiculous. That is not acceptable. And that is crazy to see my son is waiting on a service that he needs and deserve, and I can't even get it from him because it's not enough providers in the field who are taking clients. And that's heartbreaking. So are you saying we the world needs more community Joanne Lockwood: advocates like yourself, independence, small charities, small advocacy groups? Maybe More resources. People within the autistic community come together and become an advocacy powerhouse between them. Is is that kind of the way things are gonna develop, you think? Crystal Jordan: Still, as as as we get more parents like me to keep pushing this topic, we're going to grow as a community. Now it's certain things in the community. Some people in the community don't agree with like puzzle pieces. I'm talking about an autistic or a person with an or perfect person with autism. We have bigger things to talk about. We have bigger things to worry about, like, non security for for autistic individuals, funding for them to live independent. Like, I feel like sometime in a community, we focus on things that are so small that that is that is not as important as you having a job to pay your bills and not lose your home. I have a autistic friend, and she's in a process that was her law. She she's nonverbal, she's an adult and she cannot pay her bills. These are conversations that need to be at because she needs a job where she's able to work and not speak. Cause she cause she cause she's nonverbal. She's not speaking. If everyone be technical, she has an aid device and she needs a, and she has seizures. So she need a work from home job that can be able to pay her so she won't lose her home. These are conversations that need to be had versus puzzle pieces versus, oh, you used the wrong term or that's not important. What is important is inclusion, jobs, hiring autistic individuals, especially nonverbal autistic individuals, jobs, having training for autistic individuals. Those are the things that are super important that are overlooked and overshadowed because we're talking about puzzle pieces. So we're talking about, oh, you used the wrong term. You should say personal autism or autistic individual. Let's talk about something that is more important. My son is nonverbal. Would he be able to have a job? I mean, the reason why I'm passionate about that, I lost my voice last year, no 2023 and I didn't have a voice. I would never forget to not talk at work. So my manager at the time sent me home and he told me, and I quote, I will never forget this. He said, your voice is a part of your uniform. I cried. I was so mad because I know a little bit of ASL, a customized ASL. And I also wrote, how dare you? But I talked to my HRs over here that, that, that important, but he gave me a glimpse. I feel like God took my voice as a dope, but I can see how it would be for my son. And that was the most powerful thing. And it's so funny. I lost my voice at work a couple of days ago. I couldn't talk, but my management was accommodating, guests understood what I wanted. I was writing, I was communicating, I was signing and it went good. Now, one man said, you sure you want to be here? And I, and I just think about whenever I lose my voice, it's the most humbling thing and experience for me. Cause I, when I lost my voice, I had to go grocery shopping. I had to go through a drive through. Do you know how hard that was to not be able to talk? So that's why I'm super passionate about job security because my son is going to be older and I need him to have a job. Even though 9 out of 10, I'm I'm going my company's gonna be successful. He gonna work there, and I'm gonna hire nonspeaking individuals. But till then, I'm not there yet. It's companies like Walmart. It's companies like Target, Apple, Google, Tesla who need to think about hiring these type of individuals today. Not tomorrow, today. I've got a a friend, Joanne Lockwood: married couple friend, who had a a child with Down syndrome, 32 years ago. So their their son is now 32, and they are older than me. They're in their mid sixties. They're very aware of the fact they won't be able to go on providing care and advocacy for their son for the rest of their lives. And that there was a law passed in the UK a couple of years ago where there was a well, this has all been passed. There's an expectation that people with down syndrome wouldn't survive past their thirties. So most people with downs would have their parents around. They'd have advocacy. They'd have a combination of housing, and someone talks after them. What's happening now is because of the health care advances, people with, downs are now living longer and potentially most of them are now outliving their parents. So we've got a crisis with the with people with downs where they will not be able to see that they haven't got independent living or they're not independently capable of living. The state will need to provide support and advocacy for them. I think what you're saying here is, you know, when you have your your son Zack, he's nonverbal at the age of 3 or 4 years old, however he is now. When he gets into his teens, when he gets into his twenties and thirties, you will not be able to advocate for him for the rest of his life. He need as you say, he needs independent living. He needs to have his own his own property, his own house, his own life, his own training, his education, and job. He has passion and purpose, doesn't he? So I think you're right. I mean, I see a lot of people talk about young autistic children and what how we can help them. I see a lot of people who are adults, who have autism, who have ADHD, who have neurodiversity, advocating for themselves. What I don't see is adult people autistic people being advocated for on television nationally. I don't see the awareness of nonverbal autistic people in their twenties, thirties, and forties and how we support them. So what you've done here is you've highlighted to me this big gulf between self advocating functioning people who with autism and nonverbal people who are young at the moment. What do we do? How do we how do we how do we how do we bang our fists on the table in in a in the right way to get people to think about the future, not just about today. If people can, if I can give Jess a Crystal Jordan: glimpse, imagine if your granddaughter was autistic, where were you wanting to be when you passed? I feel like people had to personally place their self in people's shoes. And then I feel like we'll get closer to answering the problem or or coming with a better solution. So that's that's the challenge, isn't it? We we we haven't created, Joanne Lockwood: I would call it, an empathy bridge. We haven't got people to connect in an empathetic way to the the problems so that they become bought into providing the solution. I think that's that's the challenge we've got, isn't it? People just kick you off into touch because you're there advocating the sack. They can abdicate responsibility for the time being. But you're gonna have to keep keep keep the pressure on for the next 20, 30, 40 years. That relies on you having good health, physical and mental health, having a support network, having a career yourself. Otherwise, he will be dependent on you for a long time. So Crystal Jordan: my son is becoming independent every day from he just started trying to brush his teeth. He gets his self dressed down, put his own shoes and socks on. So, eventually, as he get older, I'm gonna teach him how to cook because I need him to be independent. That that is my biggest focus is him being independent. Joanne Lockwood: Do you see other people who have autistic children having same impetus as you? Are you I presume you're not unique in this. These are proven techniques. And how do we help the wider understanding of of how to do this? Crystal Jordan: I believe that autism is one word. It's a million different stories. I came up with a came up with a quote, but that's what it is. But most all of the parents I know who have autistic kids, they wish for the same thing I wish for, which is their kids being independent, their kids thriving and living an independent life. And we watching them grow into the also individual that they are. Yeah. And that Joanne Lockwood: that's no different to any child. You know? I have 2 children, and I was there's nothing prouder than to see our 2 children go to university, grow up, get married, have a have their own house, property. And you feel like you you as a parent have then pushed them into the world, and your your job's never done, but at least you feel that you've achieved a milestone of independent children. They've they're now functioning adults in their own right. So that's quite a challenge as a parent regardless of whether they're autistic or not. I love that. Crystal Jordan: So I feel like as parents, we are like we are managers to little kids, little people. And then as they get older, we're still their manager, and then we kinda get demoted as they get older because they're not listen to their managers no more. Like, whatever. I'm a girl. I can do what I want. So I look at it as me being his little manager right now. And then once he get older, he's gonna manage his own life, and I'm gonna become the assistant manager. Then I know that analogy of, like, crystal. Yeah. I like that. So you're his Joanne Lockwood: manager. You know? I'm thinking about boxing promoter and manager that I suppose a boxing promoter, you're the advocate in that role. As a manager, you're there keeping you on track, and then you're gonna get you're gonna get fired. Feel like the apprentice. You get fired. Oh, yeah. And I'm gonna become assistant manager. Yeah. He don't need you no more sort of thing. Yeah. Right. And once Crystal Jordan: you're done here yeah. I'm gonna become a shift leader. So it's like Yeah. I love that. I love that. So Joanne Lockwood: your role is to become obsolete, and that's that that will give you no more pleasure than being having Zach going out there and and not needing you as much. Okay. You're still always gonna be his mom. He's always gonna always have a sweet spot. You always gonna wanna hug him, whenever you can. So yeah. But he he has his own life and passion, purpose. Yeah. We all want that. Fantastic. So so you set up Zachariah's World, which is, how would you describe it? Is it a charity? Is it just a a a mission, a brand, or No. Zachariah World is not a charity. It's a for Crystal Jordan: profit business. It is warehouse all my books because I have wrote almost 20 books or if not more. And they're all about, either autism or inclusion or, I also write for moms, a coloring book for moms and a safe haven for moms as well, a planner for moms. So that brand is my autism friendly brand that you can buy apparel, and you can buy books for your organizations, your classrooms, your schools. So which gives a bit of depth into what sort of so you Joanne Lockwood: mentioned a lot of different books there. So there are some specific for workplaces, some specific for parents, schools. So You have a whole bunch of books. So my books are, one of my Crystal Jordan: first books that I promote the most is called Just Like You. That book is a great introduction to what autism is. And I recommend buying that book for your schools, your organizations, or gifts because it's a good tool. Other books are just fun. Like I am also. It's talk about positive affirmation for autistic kids because I want autistic kids to understand that they are awesome. They are enough and they are gifted and they are loved. So the older other books I've created, I've created coloring books. And then for the moms, I have created coloring books for us because it's therapeutic for us to color. For me personally, like when I'm going I never forget I was going through something. And when I, worked in my coloring book and I started to color and it just I feel bad when I color, even though my hands are cramp up now. But I like to color, so I made a coloring book for moms. And that brand is just is that. It's meant to to educate, have fun, and that's it. Is it is it Joanne Lockwood: lonely being the parent of an autistic child? Do you feel that there's not enough knowledge? It's a difference between being lonely and being alone. Okay. You're not alone. You have people around you. But you can be lonely where people don't understand you. You don't understand the challenge. You've got no one to offload. You've got no one to to share your burden. Is it can it be lonely? I wanna say I was in a place Crystal Jordan: one time where it was lonely because I I didn't I didn't I don't like I don't vent to people like that when it comes to my son, but I'm not there. I wasn't there long because I ended up finding communities on Facebook and finding other women who have autistic kids that I can call and talk to them. They're like, Hey, I'm going through this. And we talk about it, but I'm, I'm more solution and strategy based. So for me, I'm not along or lonely. Dating is interesting because I'm very particular who I date because I do have an autistic kid and he is nonverbal. So I'm like, okay. That that's in my life is where I feel a lot. Okay. So, yeah, it's you feel that you have Joanne Lockwood: to declare Zach as part of a relationship. Is you're you're not dating you, you're dating both of you. Dating both of us, Crystal Jordan: but not originally. Like, I have a boundary. Like, don't I don't want you talking about my kids too quick because for me, that gave me weird vibes. So it's hard to navigate and be single and, have autistic kid. But I'm not actively looking, so it is what it is. I suppose at the moment where you are with this Joanne Lockwood: is Zach has to come first in any relationship. Crystal Jordan: Any relationship, he has to always be first. And he Joanne Lockwood: has, I don't mean this unkindly, but complex needs. He has complex emotions. He has complex so somebody has to join you in the advocacy battle. They can't come on as a as a bystander. Right. They have to understand some days Crystal Jordan: I'm I'm gonna have to go to something. Like, we may have a date today, but something may happen. I have something to do. Then I'm also big at being a part of his being a part of my son's life. So I'm not saying that the person I would talk to wanna wanna come first, but I can't will always be first. Even when they become my dope, he will always be first. Some of that's a Joanne Lockwood: mother's instinct anyway, isn't it, to protect your child? And moms and their sons are even more tightly bonded. So, yeah, I I I get that completely. We obviously, you just said you're you're on the market for what I've got to hope. So you you have you have friends and with autistic children, presumably, who are married or or living as a couple, and they're navigating this as a couple. What what about if they have other children? How how how sometimes is it if you've got a, an a a typical and an atypical child, it must be must be hard to ensure that your typical child doesn't feel pushed out or marginalized from their atypical child with autism, where you're putting all your all your time into that one child. Okay. Crystal Jordan: So all of my main autistic moms, friends, we're all single. Oh, I only know one who is married. She don't live in Schlippen, Virginia. And she navigates fine with her. She has one atypical kid, and her other kids are neurotypical. Neurotypical is society standard and normal. I don't because I don't use the word normal. I use neurotypical, and she navigates through having it. And she's and she's a advocate, and she's amazing. Now my other friends who are single as myself and they have autistic kids, one, she only has one. She I think she navigates very fine. The other one, she she has 2.1 is autistic, 1 is not. And I feel like she separates it pretty well even though she she used she used to be married, but now she's divorced. So I think she's navigating being a divorced woman and raising a autistic kid by herself. They're all in different it's funny saying that out loud. We're all in different different spots in our life, but we love on our our kid. You used Joanne Lockwood: a an acronym in passing a bit earlier. I think I think you said IEP. Can you explain what an IEP is and why it's important for that? So IEP is a Crystal Jordan: individualized educational plan. That is something that you have in place in your school or a 504 plan. So those are similar, but they're different. And, 504 have more accommodations. I am actually an IEP advocate as well. So when it comes to my son and why it's so important and the reason why, cause he he's categorized in 1 to 13 categories, which is autism. So with him being categorized and he has certain delays, I say weaknesses sometimes, sometimes I say delays that we have to work on and navigate. So for me, so as of right now, my son, he cannot write his name. So one of the goals is him learning how to write his name, but also having OT services at school that he deserves. And I knew that the data would show that, which he is OT at school now, but I always knew that data was going to show that. So we have an IEP, you know, your laws, you know, you need to go in with an open mind. And if you can afford an advocate or if you know, an advocate who's free, had them come a part of the IEP meeting and add them to your team because you're one big team. But IEPs are very important when you have a special kid. Yeah. No. I I get that. And too often Joanne Lockwood: what we do is we we try and apply generic solutions. But we need to recognize that we need individualistic. And you say here, the individualized education program allows us to create something just for Zach or just for another autistic child, not treat them like everybody else because age you know, typical children tend to be grouped under a big banner of they all get treated the same. But neurodiversity autism are are so individual. Zach's flavor of autism is different to another child's flavor of autism. They may have similar attributes, but it's very individualized. And you have to what you're saying here is recognize what Zach needs, not what stereotype of an autistic child needs. Right. And that's the point of a IEP. Crystal Jordan: Come on, man. I told you it's cold. That's the point. Putting a blanket on Joanne Lockwood: to leave herself warm. She's not used to the the cold in the south. Crystal Jordan: I'm not. It's so cold here. I can't wait till the summer. But, to answer your question, the IEP, every person IEP should be, it's, it should be dedicated to that child is not to make accommodations for the school or the teacher is to make accommodations for the child. And those plans should be smart goals. So when you have your IEP meeting, if your goals are not a smart goal, which is a strategy with making sure the goals are very small. S is for and I have a okay. So before I say the word, y'all, I have a speech impediment and I may be also snick, not sure yet, but S is for specific. I have a problem saying that. M is for measurable, A is for the attributes, R is for the, is being relatable and T is for taught. So you're planning your kid IAP meeting, it should not be, the goals should not be opinion based. It should be a smart goal. And yeah, and then look up some books like right wall. They are attorneys who, who have books and trainings for parents to learn more about IEP, rights and laws. There's so many laws involved in IEP. The IEP is legal buying a contract and most parents don't even realize it's a contract between you and the school. So yeah. So with my son and just in general, I made sure that his goals made sense and I make sure they match who he is. And are they are they are they are attainable? Can he attain this goal? Can he reach it? Or are we are we putting the expectation for him that's too high? And I I presume that the contract is both ways. So you Joanne Lockwood: as a you as a mom, you as a parent have to uphold your side of the education and me. If he needs work at home, you're part of that. It's not just just the school. The contract is both ways, isn't it? Crystal Jordan: So one thing I like about me, I always ask for a whole school communication guy. I'm a whole school communication. I'm sorry. Because since he is nonverbal, I need to be, I want to know how they went to school, what he did today, what was going on at school. So these are things that I personally ask for as accommodation that he's put in his IV. I'm curious. What makes Zach laugh and and Joanne Lockwood: giggle and and and have fun? What what does he do? Crystal Jordan: Oh, God. I got a story for y'all. So last week, the teacher called me. I'm at work. The teacher was like, we can't find Zach's shoe. See, he's take his shoes off and they said, every time we look for it, he laughs. So the school had to get him some brand new shoes. They said, send it home with some new shoes. Guess what a shoe was? And his school Joanne Lockwood: bag? No, the shoe was up under all of the Crystal Jordan: coats in a closet. He put it in the closet up under all those coats that like the school always give the kids who can afford it. Like shoes, clothes, coats. Yeah. So he hit the shoe under there and they say every time he looked, he looked for the shoe, they looked in the trash. They said Zach would just laugh and like he was the funniest thing. That boy is funny. He thinks he thinks everything's funny. I favor. So the stereotype Joanne Lockwood: would be that because he's nonverbal because he's has autism that you wouldn't have humor. You wouldn't have that level of intelligence. So just because he's nonverbal, just because he's autistic doesn't mean to say he hasn't a person with a personality, a cheekiness, a mischievous side as well. Also, most people what what people think Crystal Jordan: is because he's not verbal, he don't understand. And that's not true. So he's able to he can interpret. He can he he Joanne Lockwood: understands language. Right. Can he can he read at all? That is to be determined. I don't Crystal Jordan: know if he can read or not. Part of me thinks so, but I don't know. He may not gonna recognize words, but not not read. Does that make so Joanne Lockwood: he could he can tell what that means. Maybe biscuits or cake or something. I don't know because I that's something I'm trying to Crystal Jordan: figure out as we speak. So I I don't know if he can read or not. This one, I don't know. How old is he now? 7. He'd be 8.7? He'd be 8 or 20. Oh, blimey. Joanne Lockwood: Uh-huh. So yeah. That I'm just trying to think back to when our children were 8. Both our children had, developmental differences where it turned out our son had dyslexia and our daughter had a different sort of dyslexia. We struggled to get our education system to recognize that. And also we struggled as parents to identify with it. We we were getting very frustrated when our son couldn't do his alphabet, or we're holding flashcards up with a for apple and b for bear or something. And he he he just couldn't get a for apple. And we just didn't understand it. We were getting very frustrated with him. And when we finally had this diagnosis for, dyslexia, we suddenly understood why he's not able to recognize letters and shapes and things. But it took us many years to that. So when he got to about 8, I think we started realizing more. We even sent him to an optician to have his eyes tested and they gave him glasses, but he never would wear his glasses. Then we realized what was happening was the eye test is all about picking letters off a chart because he couldn't recognize the shapes in the letters. His dyslexia was stopping him past the eye test. So they assumed he was stroking with eyes. In reality, it was his dyslexia. So, yeah, there's a lot of lessons that we had to learn about with a child who wasn't developing in the way that you expect them to. And you have to overcome this the knowledge gap in your own self and and educate the people around you. It's a challenge, isn't it? Yes. It Crystal Jordan: is. So what what surprised you in the last year with Zach? You Joanne Lockwood: know, he he's getting older. He's learning stuff. Obviously, this cheekiness and hiding his shoe is quite quite an adventure. But what what other things has he has he surprised you with? This goes down so simple to somebody Crystal Jordan: else. What surprised me this year well, so far with Zachariah is him getting dressed, him putting his shoes on, him knowing when I was in the bathroom to get dressed, he know I'm leaving. So he would go downstairs and get dressed and pull out his clothes. He'd be matching, for his shoes on. He'd be ready. Like, I'm ready. And for me, I'm like, that's that's independent. And that's what I want for you. So that Joanne Lockwood: that beginning of independence where he does stuff on his own, that's that's what's really inspiring you. Yep. That is that makes my Crystal Jordan: day. I can see that. Yeah. I can see that too. It's, all of your Joanne Lockwood: advocacy, your hardware, the IEP, all of these sort of things are starting to show this progress. And Right. It gives you the faith that things are working, doesn't it? Yes, it Crystal Jordan: does. They show that that's my crazy strategies. They're not really crazy, but my strategies are really working. So what what else did you are Joanne Lockwood: you planning for this year and beyond? You know, you've got your Zachariah's World. You've got your books, your 20 odd books, and some of the advocacy work you're doing and building the communities. What other things are you working on? Crystal Jordan: So I'm dropping the autism awareness in Neurodiverse Magazine. Is dropping April 2, 25. I'm super excited about this because I'm focusing on not just autism, but all disabilities. So this is about to be a powerful magazine. This is about to be a magazine that shapes how we look at other individuals who don't look like us or act like us or think like us. And I'm also working on writing my book on how to be an advocate and I'm breaking down my strategies because it was highly requested. And then last but not least, no, not last, not least. I have a couple of days. I'm working on a community for moms. And now last but not least, I'm working on a mocktail recipe book. Cause I don't drink alcohol. Not really. It may be like super rare, but I don't drink alcohol. So I'm coming out with a, mocktail recipe book. I don't drink either. I gave up 3 years ago. I've been sober now Joanne Lockwood: for 3 and a bit years. So, yeah, it's a good good thing for me. But, that sounds amazing. There are people gonna be listening to this who either know someone with an autistic child. How can they, a, sorry, help and and help the parents, the, you know, the person they're talking to, the father, the mother, whoever maybe you're talking to. How can people support them most effectively? I'd say Crystal Jordan: be understanding, be patient, and offer, hey. Do you need do you need time off? Do you want me to come babysit your kid while you just run to the store for an hour or go running or do something? Sometimes we just need a break. So Joanne Lockwood: How how can we help if if I was living next door to you and I I came to you and said, Crystal, you need a break. I need to help. I'm kinda nervous. I'm worried about taking on that responsibility for for Zachariah for an hour, 2 hours because I don't have any experience of autistic children myself. How can I overcome that anxiety that I might have in being able to reach out to you? I would recommend come sit with Crystal Jordan: me for a couple days out of the month or out of the week or whatever, whatever your ability is. And you can see how he navigates or how she navigates and we can learn, Hey, this work for him. This doesn't work for him. My son is all about a blanket and a tablet. As long he got a blanket over him and a tablet, he'll be fine in his snacks. He's really easy to watch. So it's his happy place? His happy place is out of her blanket and with his, tablet and some snacks. Does he again, I I'd be worried that you give him the Joanne Lockwood: instruction. Give him his blanket. Give him his tablet. He'd be fine. But what if he isn't? What what what can go wrong? And Just call me, and I'll Crystal Jordan: come back. Go ahead. Yeah. Obviously. Obviously. Yeah. Good plan. Joanne Lockwood: Because I I'd be nervous, and I I I was really nervous taking our 2 children home for the first time. We take them out of hospital. We take them home. We put them on the bed. What do I do now? Will I break this child? And so, yeah, we we could do get nervous about stepping out of our comfort zone sometimes, don't we? Yeah. We Crystal Jordan: do. Because people you know, you said me Joanne Lockwood: people get confused about the language. As you said, if we're worried about the little tiny thing, are you an autistic child or child with autism, all these kind of things we talk about. But there's a there's a lack of knowledge. We all we all live in our own little echo chamber. We all blinkers on. We hear what we know. Anything outside of that, we we tend to be blissfully unaware of. And I think, hopefully, things we talked about today will give people some more confidence to find out more, to, to investigate, to read some of your books. But, yeah, there's, there's definitely a nervousness. So I was, I was nervous around our friend down syndrome child for a while. Because he was unpredictable. He was hard to read, hard to plan for. There was no way of having a conversation in the same way. So you have to learn. Try not to be patronizing. You don't talk to them as if they're a small child. You have to sort of treat him as a as an adult because he's now an adult. You have to treat him as a teenager when he's a teenager. And if you don't care for without that exposure, without that learning, without that advocacy, you could become very nervous and hold back. And I think that's what people are worried about getting it wrong. Right. Crystal Jordan: But give yourself grace and patience. Grace and patience is all you need. Grace and patience. I like that. Yeah. Be kind to Joanne Lockwood: yourself and reach out and learn and grow. You don't no one's gonna criticize you for trying, are they? And if they do criticize you, then just don't Crystal Jordan: help them no more. Yeah. Because so we've been chatting around Joanne Lockwood: chatting away for, well, over an hour now in the green room and before we went live. And we had Zac joining the conversation as well, which is incredible. How do people get ahold of you? What's the best platform? And do we Google you? My the best way you can get in contact with Crystal Jordan: me is I am Crystal Jordan on all platforms. And no matter what platform it is, you can just type in I am Crystal Jordan. My name is so easy. It's I m, and it's c r y s t a l, Jordan, j o r d a n. I'm sure, and I'll put all the Joanne Lockwood: details in the show notes. I think you've given me some links, which I'll, in the, in the forms of zachariahsworld.com so we can we can signpost all that for you. And, no, it's been a absolute pleasure talking to you. I'm finding out more about Zach, finding more about you. And I'm certainly more educated around autistic children than I was before. Oh, thank you. And hopefully, I'll be less nervous about being around people, parents who have have autistic children and be able to offer some support. Thank you. But Crystal Jordan: yeah. Yeah. Yes. Become an ally and just keep doing what you're doing. Telling the Joanne Lockwood: stories, normalizing the conversations without using the word normal. Yeah. It's, creating the awareness out there. We all I think we can all take personal responsibility for raising awareness Yes. And doing our own education. I agree. And thank you so much for just having me on Crystal Jordan: your platform and having this amazing conversation. Crystal, thank Joanne Lockwood: you very much. As we bring this conversation to a close, I want to express my deepest gratitude to you, our listener, for lending your ear and heart to the cause of inclusion. Today's discussion strike a chord. Consider subscribing to Inclusion Bites and become part of our ever growing community, driving real change. Share this journey with friends, family, and colleagues. Let's amplify the voices that matter. Got thoughts, stories, or a vision to share? I'm all ears. Reach out to jo.lockwood@seechangehappen.co.uk, and let's make your voice heard. Until next time. This is Joanne Lockwood signing off with a promise to return with more enriching narratives that challenge, inspire, and unite us all. Here's to fostering a more inclusive world one episode at a time. Catch you on the next bite.