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When Your ZIP Code Determines Your Child’s Autism Services | Danielle Fields · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the Inchstones podcast. As you guys all know and live, one of the hardest things about raising a child with autism is not just about their access to the right education or the right therapies or the support. It can depend as something as arbitrary as your zip code in this country. And my guest today is fellow autism mom Danielle Fields. She knows this in a way that, that very few parents do. Danielle is California native mom to her son Paul, and over the course of their journey, ready for this. She has lived in four different states. California, Nevada, Georgia, and now is in New Jersey. All in the pursuit of services that Paul needed. Let that sink in for a second. Each state though, has taught her something. And what was here in New Jersey that Paul finally was able to gain access to the level of support that Danielle has been searching for, including out of district private education and placement beginning in middle school. And today we are going to talk about which so many of you know is that when a mother realizes that the system available to her child isn't enough, what families will sacrifice in pursuit of appropriate care and education. And when you stop asking yourself what does the system offer? And then you start asking, what is it that my child actually needs? So, Danielle, thank you for being here today on Inchstones and sharing what is going to be a wild story and journey of yours.
• 1:36
  Speaker B: Thank you for having me. I'm, I'm really happy to be here. I'm really excited to share our story. I think it was very unique when I finally realized that it was something so powerful because at the time it was just really hard.
• 1:50
  Speaker A: Yes. Well, so before we even get into all of that, tell me about Paul, your sweet boy, who he is and what you want people to know and understand about him before we talk about that journey.
• 2:01
  Speaker B: Okay, so Paul is a 19 year old neurodiverse adult now. I have to say that now he's a neurodiverse adult. He's very loving, which is sometimes unusual on the autism spectrum and you know, doesn't like to be, he loves to be touched. He loves hugs. He's so sweet, sweet and considerate and so handsome. He doesn't even know how handsome he is. And people are coming up to him, girls are like, ooh. And I'm like, well, if you like stimming, you know, like if he can do this with you, come on over. But he's just a very loving child. He's a very quiet spirit and I love my boy. He's, he's just everything to me. I do have two Kids. But he. He's my. He's one of my everythings, so.
• 2:44
  Speaker A: Well, so. So you started. So that's. You know, motherhood took you by storm, as it does for all of us. I say that motherhood hits whether you have a child that's atypical or not. Motherhood comes wrapped up in a beautiful bow, but as a Mack truck as well. Right. So you started in California, and then ultimately lived Nevada, Georgia, and now New Jersey. Take me back to the beginning. And when did you realize that what you were, where you were living, might determine what's possible for your son? Because that's a. That's a mind. Excuse my French. F. If. If you. If you can imagine it. And I would love to. To. To hear more, to solidify what that meant and how that felt.
• 3:26
  Speaker B: Okay. So I actually have a nephew on the spectrum, and his name is Kamari. So I didn't know what autism was, and I thought my son was hard of hearing because sometimes he would, you know, kind of like, have fleeting hearing, like, hey, Paul. He's like. And sometimes he'd make eye contact. But what I learned, or what I noticed about California initially was just that once services were made available to him, there weren't enough people to actually do the services. And in my mind, I'm thinking, well, what am I supposed to be?
• 3:56
  Speaker A: Shouldn't they be hiring more people?
• 3:58
  Speaker B: Exactly. You gave me this diagnosis, and it's almost like, shoo away now. And I'm like, okay, I'm at the time 23:7, just finished grad school. Like, what am I gonna do? And so, yeah, I was very, very nervous. So California initially just made me think, this is a very liberal state. It's my home state, but it's not where we're going to stay. We're gonna go wherever. Wherever the services are. And so since California wasn't that, I didn't take much time to figure that out. And I just was ready to move because ultimately, my goal and my everything in life was to make sure that he had everything he needed. If it wasn't in California, we're going somewhere else.
• 4:35
  Speaker A: You know, that's just. It's such an enormous move. I mean, like, think I have another friend who just moved her and her daughter to. From Texas to Arizona for similar autism, you know, therapies and treatment. And so it's something that I hear as a. It's a norm, right? But it's such an enormous norm and a normative choice. But doing it repeatedly has to have done something to you, like when you imagine yourself making those decisions, you know, talk me through, like, what that, where that landed. Like, what did it actually cost your family? What did it cost you emotionally? You said you just had finished grad school. Like, what did it cost you professionally?
• 5:16
  Speaker B: This is. Yes. Okay, so, mom bear first, and I feel like I could be very transparent on here. First, I'll say I love my son with all my heart, legs, toes, ears. However, when I, I, I was getting ready to go to law school, had finished the lsat, passed, was ready, had all my life's recommendation, everything, and then I find out I'm pregnant. It's cool, Totally fine. I'm still gonna go now. When I found out that Paul was autistic, it shaped my world in a way that was just like, oh, my God, why me? First of all, for the first four days, I cursed God, I cursed everything. I mean, four days.
• 5:48
  Speaker A: I think I did that for four months. Four days.
• 5:53
  Speaker B: I'm a very, very positive, like, silver lining kind of person. So for me, it was like that long time. So for the four days, I cursed God. Like, how could you do this to me? Why? My son, like, I'm a social butterfly. I have all these things for him. And after that, I just kind of, like took all of that negative energy and turned into a positive. I told myself, if I can use all this negative energy to go that way, I can use even more of it to go the opposite way.
• 6:18
  Speaker A: That's right.
• 6:19
  Speaker B: So emotionally, I was pretty down in the dumps, but I kind of switched that part pretty quick. But it's, it's emotional all the time. You know, it's. It's sincerely emotional all the time. So unlike most people, I left with nothing. I didn't have a lot of money. I didn't have much of anything. All I had was a hope, wish, and a prayer that I was going to find the services that he needed. And I did have some people along the way that sincerely just kind of helped out, truthfully. So financially, I didn't have it.
• 6:48
  Speaker A: Yeah, well, I think that, I mean, again, that that speaks to what we are supposed to as a human race and culture and as servants to whatever above you believe in. We are supposed to find people and look for the helpers in whatever our journey is. And that it can be very difficult for mothers like us who feel like, well, I'm a strong woman who can not only meet every, every trial and tribulation on the road, but we have to also be humble enough to accept help when it, when it, when it does arrive.
• 7:17
  Speaker B: Yeah. And one thing that I didn't notice, and I shouldn't say I didn't notice, but I've spoken to my therapist about it more than anyone because I used to feel, like, embarrassed. Not embarrassed about it. I used to feel like I can't feel this way. The trajectory that I was on for my life was to be an attorney, do all that. And then when things happened, it was like I had to take jobs wherever I was because I was moving so many places to find services for him. Now, granted, they were. They were damn good jobs, but I couldn't stay long because if the services weren't there, we were out, we were gone. Yes. So from. From a professional standpoint, it definitely hurt me probably the most because I hold three degrees. And oftentimes it had been difficult for me to find work because they're looking at, you know, longevity at a company and not looking at the person. But my. My saving grace is that when I get in front of someone, they're like, how can we not hire her?
• 8:07
  Speaker A: That's right. That's right.
• 8:08
  Speaker B: You know, when they say, why do you think you're right for the job? Why am I not right?
• 8:12
  Speaker A: Well, that's also the way in which I think life. I think that's the way in which life is revealed to us in the situation as a mother of a child with profound autism, Right. You start to. You start to do a 180 on what's not happening and say, well, what can be revealed through this? So, Danielle, take me through. So you finally, you get to New Jersey. What was so different? And what did you find here that you had not been able to access elsewhere? Because as someone who is very surprised that she landed in New Jersey, like, I. I was Dr. I, I was dragged from New York City kicking and screaming, and. Yeah, oh, I le going across the Hudson was like, please don't make me do it. I am so, so grateful that I'm in New Jersey for my kids. So tell me, what did you finally realize and find here that you couldn't access other. Other states?
• 9:03
  Speaker B: All right, I'll make it really quick for the other states. California did not have people to do the services. Nevada cared more about the entertainment industry than education.
• 9:12
  Speaker A: Okay.
• 9:12
  Speaker B: Yeah. Yikes. Nevada cared about more about the industry than education. Yikes. They're gonna ring the doorbell again. I'm so sorry.
• 9:20
  Speaker A: That's okay. Don't worry. Okay, that's it. All out.
• 9:24
  Speaker B: So Nevada, big on entertainment. Nothing with education. Georgia, more than everything, taught me that the iep is the Bible, which I'm so thankful for. And then still was more, but not enough. So what I ended up doing, I was like, okay, we're gonna go wherever is next. If that means out of the country, if that means somewhere else, that's what we're doing. We're already so far on the east coast, here we are. So I looked up into New Jersey, saw all the services that were available, and I'm like, this is too good to be true.
• 9:53
  Speaker A: You're like, this exists. Everything you'd heard about New Jersey had been horrible. Like I had heard.
• 9:58
  Speaker B: Exactly. And so I'm sitting here like, well, I didn't know anything about New Jersey. I heard nothing bad. Honestly, I didn't know anything. So I basically was like, okay, everything I've found is great. So I started calling. I called Perform Care, made sure it was a real thing. You know, before I'm gonna make this fourth move, I need to make sure that this is what it is, because I am tired. I am tired of moving jobs and moving my son and doing a lot of this, like, solo.
• 10:22
  Speaker A: Let me, let me pause you there for a second because I, I, I recorded with someone else recently who actually has a son about the same age as your Paul, and she too, had to make a decision that was after so many years of moving around and choices. He was, Long story short, he was placed in a, in a residential facility three hours away. And you just said something that I brought up with her, and I have to get your input on this.
• 10:47
  Speaker B: Okay.
• 10:49
  Speaker A: There is so much energetic burning of women and mothers who have been on this life, on this path for so long, and we fail to remember how much energy expended to even get you to the point where you're in New Jersey going, okay, Perform Care exists, and he's gonna be able to get out of district placement. All these things, the amount of human energy that you expended and that I expend in a different way and that she expended. I don't think typical mothers can realize what, how much you burn. So when you say you're like, I am exhausted, I miss that is not just like, I woke up after a week's of bad sleep, that it's a next level exhaustion and it hits the marrow. So I'm just, I'm really glad that you organically said that, because I really need this to be heard to everyone that's listening. Your level of exhaustion is understood by those in your niche. Forget it. Because this is not just regular tired.
• 11:55
  Speaker B: It is not Regular. It is like mental, emotional, physical. Every type.
• 12:01
  Speaker A: Financial, whole body. Yeah, exactly.
• 12:04
  Speaker B: The whole thing. There is one thing I do want to share that New Jersey provided that I didn't realize was a thing, but I kind of fell into out of district placement. I didn't know what it was. All I knew was that, you know, they were going to tell my kid. You know, my. His teacher called. He was in a self contained classroom. Teacher called and said, hey, we need to have a meeting. And I'm like, who did something to my son? Because he's a, he's, he's not, he has no behaviors. So she was like, no, it's nothing like that. It's nothing like that. We need to talk. So I come in, she tells me we herself his one to one. The principal said we don't believe that the school he'll be going to is good enough for him so we'd like to put him in out of district. And I'm like, what is that? And I'm thinking initially they want to put my baby somewhere, shun them off. And I had an attitude at first. So when they described, she said, it's private education.
• 12:54
  Speaker A: It's private school.
• 12:55
  Speaker B: Yeah, it's private education where you will go and cherry pick the school that you want for your child and we will pay for it. I said, change my tune, sign me up. So mine happened in a very different way than most people who I have encountered, especially in the autism community, because I'm very involved now. They have lawyers and doctors and all these things they have to go through. And mine just was kind of a cakewalk in there. And it's not something that I, I know that it was a blessing because it's not something, it's something I know that doesn't happen. And so maybe God said, hey, four states, crazy things happened, you deserve this.
• 13:28
  Speaker A: Right.
• 13:28
  Speaker B: I don't know. But I'm thankful for it because I know that that's not everybody's journey and I know that I'm like one of one in that way. Yeah.
• 13:35
  Speaker A: So I, you know, similarly I, because I have two children with the same diagnosis, boy and a girl, and they're not twins or separated by two and a half years. You know, there was a much deeper understanding of my son, who's younger, his needs were going to almost be grandfathered in. But to your point is that once, that first point of friction for the majority is much more of a fight and is much more of a legal battle. You know, I do a lot of help preparing parents for their IEP meetings and, you know, knowing what the law affords them and what it's supposed to be for their individual education plans. And then there's also these things of, like, what the school district offers. So did you start to learn, you know, through the difference of, like, accepting the available program and then also advocating for the program that Paul actually needed? Was that something that came to your attention once you got to New Jersey, or was that something that you always realized should have happened? It just didn't. For whatever reason, it was an always
• 14:38
  Speaker B: realized it should have happened. Because once I understood that he had a special need and then I did my research on what that entails and what he deserves, I said, you know what? Nope, this is it. This is not it. So I just became a fighter. If they told me no, that meant. That meant on to me. Every single time you tell me no, it's on. So I'm just going to keep pushing and going. And I just knew that what he needed was what he needed. Regardless of that, the services or the people to do the services were available.
• 15:05
  Speaker A: Yes. You know, I think that early on, wherever you sit on, you know, primal development or evolutionary biology, I deeply believe that women and mothers, whoever, however, whatever children you have, but those of us that have children with a disability, I think our inner knowing is very, very strong. And I think that our intuition on what our child needs. I would, I would never be able to tell you what would be best for Paul. I probably could do better than a regular moment. Right. I probably could do better than like a mom that has three typical children because of my children. But I deeply believe that, that the mother always has a, Has a flicker and a, and a. And a illuminating point that will never not be wrong or, I'm sorry, will never be wrong when it comes to actually going. I'm the one leading, I'm steering the ship here, and I know what's best for my child. For parents that have that gut feeling, or their gut is telling them, you know, my child's needs aren't being met. Yeah, but who keeps, you know, being reassured or, you know, poo pooed and saying like, don't. Well, don't worry, the school, the school's trying their best, you know, what do you wish someone maybe from outside, you know, the vacuum of your own life had, had told you at the beginning that you should listen to that, that intuitive part of you?
• 16:32
  Speaker B: Hmm. So I didn't have anyone.
• 16:35
  Speaker A: Didn't.
• 16:35
  Speaker B: Yeah.
• 16:35
  Speaker A: So it ended up.
• 16:36
  Speaker B: It ended up being me and my intuition and my thoughts and my desires. So I didn't have anybody. So I just, I used my own instinct to, just to do everything, to be honest with you.
• 16:46
  Speaker A: Well, that's, I mean that maybe that's really the thread underneath all of this. And it's uncomfortable for a lot of people to hear, but sometimes, and I've experienced this as well in different, in a different way, that the more you get comfortable with the silence of your own choices, the more willing and able you are to be actionable for them. And I think that sometimes there's a lot of noise around what's right for our children, specifically ones with profound needs, and you can allow the cacophony of others opinions who aren't living this life or maybe have a more bureaucratic role in a system financially or educationally. That is a beautiful yet very difficult position to be in because you, you really, it's. It's yourself and the maker above, right? It's just, it's just the two of you. So how, what would you tell for parents, you know, to get really quiet and then to make that right. What I like to call is like the next right move. Because it can be, it can be lonely. I guess it can be lonely in
• 17:48
  Speaker B: that choice for sure. All right, for the next best move, write it down. So two of my degrees are in English. I'm a writer. It's kind of, it's just what I do. Um, it's how I get the noise outta my head and put it on a paper so that it's no longer just ruminating in my head. So write it down. Whatever you fear, write down what you fear and then figure out solutions to those fears. I think it's the best thing you can do because if it's just swirling in there, you're doing nothing but making yourself even more.
• 18:14
  Speaker A: Yes. Oh, one of my, one of my favorite fellow mom advocates that you might have met her at one of the events we, we had been at together. Lori Dove talks a lot about maternal nervous system regulation. And she always says name it to tame it. Like name it and tame it. So the, your directive here of like write it down, get it out of your head, put it on paper. Is the same kind of thing, like get it out of here so it's not swirling. Put on paper. Because then it. You're able to really realize what, what's best for your family, what's best for your child. You know, what, what do you think? What, what did you. Or how do you think it might have been different had Paul had access to all the right services. Instead of you having to cross the
• 18:57
  Speaker B: country, we'll start here, which is that I'd be near my family. So we have. We have no family here. We have no friends here. We're kind of just here. And I'm here because of him. So I think the biggest thing is that I would have been able to be by family and have people outside of family who it's their job to kind of like help out and this is what they do and what they love and what they went to school for. I feel like we would have had that still in California and I'd still be in the Bay area, loving the five to ten minute drive instead of the one hour drive down the shore to get to one, which calms me. It calms me. So if we had that, we wouldn't have been able to have. Would we would not have had to have left home. And, you know, I miss my best friends and I miss my family, and we have to travel there four times a year because I can't do without them.
• 19:42
  Speaker A: Yeah, well, I think again, we get to create community wherever we are. And it's. I similarly, I don't have. I'm not from where I live and where I landed. And there's a trade off to that choice. There's a trade off in every choice that we make. I do feel very lucky to be in this state, similar to you, that we've been on this path. And I've said, I use this analogy before, like, the train's been built for Milly and Mac, right. I finally have, like, I built the locomotive, I built the railroad tracks. And like, we are on a really, really wonderful trajectory that I never in a million years thought was even part of the plan or blueprint. Right?
• 20:26
  Speaker B: For sure. For sure.
• 20:28
  Speaker A: Danielle, if there's one charge that you can share or maybe what I like to call, you know, the Inchstones of progress that you've made that you can share with other mothers and caregivers who might be a little more foggy or confused about what to do next. Would you mind sharing that with everyone?
• 20:46
  Speaker B: All right, what to do next? Are we saying, like, we just got diagnosed and then what to do next?
• 20:50
  Speaker A: Anyone that that's feeling foggy or, or confused about this, because every part of this journey really does have points of confusion.
• 20:59
  Speaker B: Okay? So I'm gonna say trust your inner instinct. Like, your intuition never steers you wrong. If you feel it, if. If you're meeting with a doctor and the doctor's like, oh, this, oh, that, but you don't feel that. Go with that. Go, go with what your feeling is because it's, it's 20 times out of 20, right? So, you know, don't second guess yourself. Just really go for what you believe is right for your kid because that IEP is for you. It's not for that meeting is for you. It is not for anybody else when you get to that point. So just, you know, use your intuition and what God gave us as women and our nurturing, you know, everything about us and just go with that. That's the biggest thing, biggest piece of advice I can give doctors or doctors and they call it practice for a reason.
• 21:41
  Speaker A: That's right. That's right. You're very, very right with that. I love ending with that. Danielle, thank you so much for sharing your story and Paul's with us because. And I keep coming back. I really cannot believe that you moved your family across four states in pursuit of something that should not be extraordinary, like the appropriate services for a child in this country. And I think the larger question continues to ask are, why should the right services for a child depend on where they live? It's mind boggling to me. Your story is a, is a very resonant reminder that advocacy often begins with the mothers and caregivers that are the ones quietly recognizing something doesn't sit right. This isn't right for my child. And our children should not have to fit into whatever happens to be available. I mean, that's just so Milly when you think about it. Systems should be around all of us that have the ability to be capable to hold and respond to who's actually in front of them. And I think you're showing us exactly what that looks like to keep fighting until you find that system in that environment. And I just deeply appreciate you sharing your story here on Inchstones today.
• 22:49
  Speaker B: No problem. Thank you for having me. I appreciate it.
• 22:51
  Speaker A: You're welcome. All right, everyone. Well, until next time here on the Inchstones podcast,