Episode 1

The speaker, Chandra Neal, shares her personal journey as a parent to a child with special needs. Her youngest son, Ryan, was born without eyes and was later diagnosed with autism. Neal discusses the challenges and complexities of raising a child with disabilities, including doctor's appointments, early interventions, and changes to family dynamics. She emphasizes the importance of connecting with others who are on a similar path and hopes to create a space for sharing stories and uplifting one another. While she is not a professional in this field, Neal draws from her own experiences and the wisdom gained from others to provide support and understanding. She invites listeners to join her in discussing the unique aspects of this special life. Hello. I appreciate your being with me today. My name is Chandra Neal and this is a new venture for me to reach out to you and just talk. Real talk about this journey being a parent to a kid with special needs. Some background about me, I come to this space as a single mother of two boys who are both adults now. My youngest boy Ryan, aka Biscuit, he just turned 20. He's my inspiration for this. I didn't realize how much my life would be altered in so many ways until the day he came into the world. And he's the love of my life. Biscuit was born without eyes. I didn't know that before he was born. I've heard it is something that could have been identified in ultrasounds in 2003, but it wasn't identified to me. And in a way, I'm glad because I think that knowledge would have led to a crazy amount of worry and stress during my pregnancy. And even I didn't even fully find out that he had no eyes for about two months when he could finally get a CT scan to see what was going on. So that condition is called bilateral anophthalmia. And so this sends you to a whirlwind of like, what the heck? I was just expecting to have a healthy baby boy and then I'm thrown into doctor's appointments and early intervention discussions and people coming to my house constantly and my life was turned upside down. And my family's life was turned upside down. My older son was seven at the time, and he was so looking forward to having a baby brother. And he didn't know what this all meant. He voiced his concerns about, you know, how's he gonna play Yu-Gi-Oh cards with me? That was his big concern at the time, you know. But as Biscuit was developing, I noticed he was doing a lot of things differently than his brother, which seemed normal to compare. I mean, I didn't have anything else to gauge it by other than how his brother was developing. But I noticed he wasn't meeting the same milestones. He wasn't walking at the same time. He wasn't talking the same way. There was a lot of rocking and self stimulation and repeating back of words that we would say to him, all of which is quite typical of a blind baby's development. But typically, a blind child will outgrow these autistic like behaviors around two or three. And Ryan wasn't outgrowing any of them, he was kind of growing into these other behaviors. And so he was officially diagnosed with autism at age five. So this added another layer of complexity to an already interesting journey. So in short, I am a mom of a now adult kid who is blind and autistic. I have been through the whirlwind of what it means as far as family dynamic, time slots being filled with doctor's appointments and intervention services and behavior services and constant distancing from what I thought my life was going to be like when we decided to have another child. So I'd love to connect with all of you on this journey. Though I know that we are all unique in our paths. There is the connection that you can only relate to from another person or parent on a similar path. So my intention is for this to be a place to just be real and share and uplift and find the humor and celebrate our kids for the amazing humans that they are, and acknowledge you as a resilient parent that keeps going day after day, good or bad. And for anyone else that is listening that is drawn to this podcast, thank you for being here. And I'd like to note that I'm not a therapist or a lawyer or an educator in this space. I come to you as a parent who has walked this path for 20 years. And I have had many different experiences of my own. And I've also learned from so many other people that I've interacted with on this journey. So I wanted to share the real stories about what we go through and also bring in parents and siblings and friends and educators and doctors and therapists and so on to get their perspective. Because I have gone through preschool, elementary, junior high, high school, transition programs with my son. And I've gone through the disconnection and the isolation and the comparison, learning, and about and establishing a special needs trust and conservatorship. Gone through all of that. And so I just wanted to share what I've gone through and maybe whether you're going through it, you have gone through it, you're going to be going through it. I'm here to share that and hopefully that that can relate to you in some way. So this is a forum to share all the things. I would love to hear from you as well on top if you like to be have discussed. And if this is something you can relate to. Awesome. I'd love to see you back here. So let's talk about this special life.