Sara Bradford is an Autistic woman with an Autistic family. Everyone from her husband to her two children are on the spectrum.
Living in Utah, Sara has been uniquely equipped to navigate the state’s difficult and often inadequate systems for her autistic family, and even still has faced exclusion at various points. But she marches on to try to change things in her community and make them better.
Today we’ll cover all kinds of issues Sara has dealt with while raising her family, from diagnosis to schooling to police violence and beyond.
Autism consulting for families from SJ Childs LLC.
Listen to the SJ Childs Podcast.
Join the Autism Advocates Support Group on Facebook.
Brynne: Welcome to another week of Mom Autism Money! Today, Joyce and I sit down with Sara Bradford to discuss raising multiple children on the spectrum. Sara has been uniquely equipped to navigate Utah’s difficult and often inadequate systems for her autistic family, and even still has faced exclusion at various points. But she marches on to try to change things in her community and make them better.
Sara Bradford is an Autistic woman and advocate. She’s the CEO of SJ Childs LLC, an autism consulting business that supports families.
She is a member of the Autism Council of Utah and also the owner of the Facebook group, Autism Advocates Support Group. She is a mother of 2, and her husband and kids are also autistic.
She is a Global Autism Speaker, as well as a Podcast Host on The SJ Childs Show.
She continues to strengthen her community through local university and hospital Autism partnerships, police training, corporate autism training programs, and more.
Sara is a children’s book author under the pen name SJ Childs covering subjects such as autism, dyslexia, physical differences, anxiety, and more with the aim of helping children understand themselves and support their peers with neurodiverse needs, and encouraging love and inclusion in every situation.
Without further ado, let’s talk to Sara.
Joyce: Hi, and welcome to Mom Autism Money. My name is Joyce and I’m here with Brynne.
Brynne: So we are here today with Sara to talk about raising multiple children on the spectrum.
And this is something that we see in families a lot. Nobody really knows the exact pin downed, singular cause of autism, but we do see it running in families. So we’re gonna talk about that a little bit today. Hi, Sara.
Brynne: We’re so excited to have you. I’m wondering if you can tell us a little bit about yourself and your experience with this.
Sara: Yeah, absolutely. Thank you so much for having me, too. I’m just, I’m so excited to connect with you guys and really bring, you know, as much value as I can to your listeners and share my success and some of my failures, cause I think those are the best things to learn from. So I’m Sara Bradford. I am an author, CEO podcast host and uh, my pen name is SJ Childs.
I have seven special needs children’s books and I basically, my journey began over a decade ago when our son was diagnosed at the age of 16 months diagnosed, um, at the time with PDD NOS, which is an early diagnosis that they give to children. They can’t pinpoint specifically autism at that time.
So he was under two years old. Uh, he was reading at one. And writing at two. And between the ages of two and four, he was still non-verbal. And we did write back and forth for communication. Tried, you know, teaching him sign language and some other things to try to gain that communication piece with him.
And then at three and a half we did some diet changes. I researched very heavily on the topic of casein and gluten and after that we saw a lot of progress in his communication in his stimming decreases, and it made for a lot easier function of life. So from about four till, he is now 12, excuse me, 13, he just turned 13 last week.
Can’t keep up with these kids. He is now verbal. And since then has just made incredible progress. He, we realized that he had photographic memory very early. And so it’s one of those sometimes known but very unique situations where you are trying to deal with the function of a high academic level with low life skills supports needed.
Our daughter is two years younger than him, and she actually was diagnosed at the age of eight. So to our surprise, and then again, we kind of saw a little what we thought, you know, might be happening. She went for her original diagnosis for dyslexia and then was diagnosed with autism, ADHD, and dyslexia.
And so as you can imagine, for a child with dyslexia, the learning processes are not the same as our child with a photographic memory who is constantly educating himself at this point. She really struggled with reading and writing and getting help in school was difficult for the first few years until we got the diagnosis.
My husband was diagnosed when my son was six. It was six or eight. It was at a neuropsych evaluation for our son to find out what his IQ was. We didn’t get that number, but we did find out he uses 99% of his working memory, which I think all the rest of us humans use about 13 percent or so. So that just goes to show the, um, immense brain power working in this child.
Once I saw the habits and accommodations I’d been giving to my husband, who we’ve been, been 19 years, coming up this year together, once I saw these call accommodations, like I said, that I’d been giving him over the years due to his own sensitivities, it really gave me this eye-opening advantage to see how much of my son’s life was matching up. Their sleeping habits, their eating habits.
Just so many things that I was able to kind of take a hold of and not try to control my child’s every bit of food or what time he was gonna go to bed and all of these things. I was able to really look at it and say, okay, what works for this man? This, you know, he’s going through the same thing. When I see that he needs different sleep cycles or different eating environments.
Now I know that these are the same kind of graces and understanding I can give to this child with the same challenges. And it’s been so interesting. I was seeing all of these wonderful, you know, traits in my daughter. She’s very, uh, she was hyper lexic in her emotional intelligence as a child. Normally that has to do with being able to read early and stuff.
That wasn’t the case, but in, in her sense of social and emotional intelligence. Just this old soul that you are just constantly in awe of the things that you’re learning from this child. And so it really took me back to my childhood and wanting me to kind of find out, if you will, where I fit in in this family of all of these unique thinkers.
So I went to a clinic where they do brain mapping and I got what was called a QEEG scan. And those results did show that I am also on the spectrum and also have ADHD and a little bit of dyslexia, a little, you know, and it’s interesting, anxiety off the chart, which is kind of what I had always, my personal story had always been about anxiety.
Though that was my presentation through my childhood and into adulthood until I understood more of, of what that meant for me. So it’s, it’s been a really interesting journey to say the least.
Joyce: So Sara, like the first time that you’re, you’re still, your first child was diagnosed, and then the second, like how, how did you feel in the second one?
Sara: Excited. Actually, we kind of joked that like, should we throw a party and welcome this celebration of like-minded individuals into our little clan our Bradford clan? Yeah. I think that with the second one, it was, and I know for a lot of families that might seem crazy, but I also have really had the opportunity in writing books about special needs to really have a broader understanding.
And I used to be a paralegal, so I, I chalk it up to that. But I’m really resourceful and it’s easy for me to find resources and, and know where to go look for things. And I don’t think that’s like that for everyone. And I wanna be that pillar for those people that need that support in the community that don’t understand, you know, I love to have connections with special education attorneys.
I mean, who does that? Right? But there’s always a need. I see the need in our community for the support systems to be in place. And I am a connector and I love to connect with people. And so for me it’s like the more connections I can make, the more referrals I can make, the more families I can help, and the better understanding of our community and our world, which is growing so much.
You know, the more understanding they can have of our children and their needs and their right to fairness and dignity and respect in the community.
Joyce: Oh, I’m sorry, what state do you live in? I’m sorry I forgot.
Joyce: Utah. Oh, okay.
Sara: Yeah, yeah. I’m in Salt Lake.
Joyce: How do you, how do you think Utah is in your state?
Sara: It’s hard cause I can’t compare it to another.
Joyce: Yeah, like, to you. Like for me in Pennsylvania, like, I will say, I always say this, I’m not leaving.
Sara: Oh, love that.
Joyce: You know, because the resources that I have, I can’t, I will not find it in any other state.
So I always like ask like, cause I never heard of, I mean, I wanna go visit Utah for sure, but I would like to know like, what, what is it for you as a family? Like, do you get services? Do you think it’s hard to find services? I know for me as an experience, once you have one child in this program, I can add another one and another one easily if I, instead of starting, so I know that is my, you know, perks when I have like multiple kids. Yeah. But in your state, Like, how was the process for you to get help to, to get, you know, therapy or to find resources for you and your family? Because I know many states don’t have that.
Sara: Absolutely. You know, I feel really lucky to say that our pediatrician was the one who said, I think you should have your son tested for autism.
So right away, I mean, I guess our family doctor was looking out for us. He was seeing signs. Um, I hadn’t even obviously had heard of the word autism, but I had no understanding of the challenges or rewards or any, you know, any support that might be needed. So it was a lot of research. And back then, you know, 12 years ago, There wasn’t as much as there is now, but of course more than there was 30 years ago.
And I, you know, see those pioneer moms who I’m like, oh my gosh. But I would say that services were easy to get and I see that other people in my state have struggled with the same processes and so I really can’t say why I’m, maybe having that little bit of experience with legal paperwork really made it easy for me to be able to fill out all the right things, get all the right documentations, understand all of the needs of the government was asking of me.
It was not easy. I mean, you know, my son is on Social Security disability and getting those benefits, it took a lot of time. We never had a denial. We didn’t have to do any appeals, anything like that. Everything went smoothly. But it was a long process. Now it’s been nine years since he’s been receiving benefits now that, and so it’s, you know, really easy now because everything’s in place.
During the time where we received early intervention. That was great. I think that my ability to make relationships and connections with people has probably been helpful in the sense that I want to build a friendship and a team and a positive environment for my child’s success. And I think that instead of kind of, backing away and just watching, like I was very involved in all of the things.
Right away in preschool, they, the school asked me to be their special needs parent liaison and that was kind of my first step into advocacy and seeing what the needs were for these other families that weren’t having as much success in getting their Medicaid filed, getting their social Security filed and maybe not understanding how to go through the process.
I have since then created some downloads that have that information step by step available to people. Just I see that need for a little bit more simplicity to help them see that it’s not such a daunting task to get. As far as we go in preschool and the class and the, um, support systems that we had, the programs were incredible.
My little guy was doing algebra in first grade and you know, in kindergarten, and the teachers were amazing. They were supporting him, but it was when we got into first grade and his school that he had been at at the beginning said, we don’t have any more programs to assist him. So they moved him to another school and within the first two days of two to four days of being at that school, he was six years old.
He left that school and a parent found him on a busy road and brought him back to the school. And when I got to the school to pick him up, they said, what a bad boy. Bad, bad, bad. And you both can’t imagine that they’re lucky that my claws stayed in and all I did was take my son out of there never to return again.
Cause they weren’t gonna have two chances to lose him. They couldn’t even keep an aide in the lunchroom long enough with six other kids to watch him? He was not, he was verbal, but he was not communicative. He did not understand how to communicate. He was scared. The teacher, you know, complained that the first day, she just, he clung to her leg the whole time?
Well he is terrified. Provide him safety and assurance and comfort. After that experience, I was really devastated, to tell you the truth. I was so disappointed in my school district. I was so disappointed in the fact that here’s a child that you may not have other children like him at this time. He is not gonna be the only child like this to come into his existence.
And when there are no programs for him or any others following, what a disservice you’re doing to him, to us, to all the children coming up in that same fashion behind him that need the higher education, but the lower life skill practice. Unfortunately, at the time, I wasn’t in such a big advocacy, you know, at this point I’ve been like, I should have started my own thing, but it wasn’t at that point.
Brynne: No, it’s hard. We had a similar experience. We loved the programming at the first school we were at. Like absolutely loved it. One of the best in the county, if not the best in the county. But they could not keep their classrooms staffed. And at that point you kind of have to be like, it’s, when you’re dealing with advocacy, especially for your own kid, you have to, I think sometimes we have to give ourselves a little bit of a break.
Yeah. Advocacy is a good thing and you wanna change things for people who come after you, but also sometimes you just have to fix what’s going on in your own life. And take care of that first, because you can’t help anyone else until you have your own situation stable. I mean, it’s, it’s so hard because you feel like you should fight it and change it for everyone that comes after you.
We just ended up moving and it fixed, it fixed the problem.
Sara: Oh, that’s great.
Joyce: I, I can’t move. So I figure it gets better. I think I tend to feel that people don’t know. Right. So you educate. So if I come to a meeting and we’re gonna learn from the mistake, I’m not coming back to discuss it again.
That is the point. We’re gonna sit here and we’re gonna discuss it, and we’re gonna educate ourselves because sometimes they, school districts don’t know, they don’t have the staffing, they don’t understand. It’s not because the be the, the, the fact that they blame your son for leaving it breaks my, it boils my blood.
Sara: I know.
Joyce: But, you know, so in that part, I have learned to calm myself. I think my, my kids have been a blessing to me because the Joyce that was before would’ve probably be more, you know. And the Joyce now it’s, I think, and then change because I, I’m gonna, my whole thing is I’m gonna teach the school district a lesson.
I am gonna improve the school district, not for my children, but for the rest of my chil, like the rest of the rest, because I can’t focus on me, my kid. It could be somebody else’s kid. And I think that it takes a community, especially as a special need parent. We need a community. We need to be, to bind together and fix the problem.
And I think that’s what we’re doing now. I think connecting with other moms, with other parents with special needs that are struggling right now with their children in school district, then it’s our chance to, you know, go out there and educate without being rude, without yelling, without, because they might not have the staffing.
Maybe that parent doesn’t know, will we educate? And I think that’s, to me, it’s important not to go out there and harass or, or just listen. And then, because, you know, we have a hard time listening in this country sit and listen and then educate. Like, this is the process. Now my whole thing is you go educate the first time, the second time it happens, there’s nowhere to.
That’s it. Mm-hmm. Then we go, you know, further. But for me, for, for having three little ones in the spectrum, I feel that they’re all different. I parent differently with all of them, but I also, I am very involved too. And I like to know, and sometimes the school don’t like to share.
Joyce: So you have to be pushy and then put that on the IEP I want every single communication and email by Friday.
And then be like, that’s how I have to be. I’m sure that some love me in school, others don’t love me in school, and that’s okay. That’s okay. But when someone comes to you, and I feel like that what you said about someone blaming they, when an adult, an educator blames a child in the spectrum or a special needs child for their behavior, that’s a red flag right there.
They have no, absolutely no education when it comes to, because just because you’re an educator doesn’t mean you’re an a child educating yourself with special education. It’s completely different ballgame. And I think that’s, that’s a red flag right there. So I I, that really when you said that about Yeah, it happens to me.
And that’s just a bit of it. Like there’s other parts of things that happen and, and you know, but also as a parent, I let them know my expectations in the school too. Um, so I don’t know how you’re at, but when I go to school, I’m like, it’s me and this is what I want. I don’t care what Maria wants. I know what I want from my kid, like from you, from my kid, and what can I do for you?
Because it’s not just one sided. Like, if you need me to help you understand my son, contact me. If there’s a behavior that you need help with, contact me.
Sara: Yeah. Well, I think that we waited maybe for the rest of that school year. I’m, I’m trying to remember when I enrolled him in online school, it feels like we did get on a lottery for an, an autism school and we, it unfortunately was in like 30 minutes away in the industrial part of town.
And again, well, I gotta tell you guys, the second I got the email, I knew in my gut that it was a bad idea. But here’s this Autistic school and you can’t convince your family, your friends, everybody, that your son shouldn’t have an opportunity to go there to try to see if he could have a good, you know, opportunity to have an education.
But I had this gut feeling that I did not stick to and I took him there again, it was lack of communication between the staff not understanding that at the time he was a third grader with an eighth grade education level. He was speaking multiple languages at this time. And the math, I think he was somewhere at like a 10th grade math level, but he was in a third grade class.
He was only eight years old, nine years old. So when we spent the entire summer doing testing and finding out, you know, where they were going to put him and how they were gonna staff, and we had this amazing plan, but what happened was they changed. They built a new school and they sent all of the staff to this other school.
So we had, no one knew who we were. No one knew the accommodations we needed. Even though we’d spent 25, 50 hours over the summer going and finding out and making all of these arrangements, still none of them stuck to it. Here’s my gut feeling, right. Here’s where I should have followed that. But he eloped from the school, left the school.
He was in an industrial part of town. We took him outta school at that point, and I enrolled him in online school. We found an amazing online school called Utah Online School, where they not only followed his IEP and made it just exceptional for him, we were able to do two grades a year at the beginning, and we were just able to move.
I could give him a test and if you passed it, he passed that whole course. If he passed, he, we didn’t need to go through all of the, not meaningless, but for him, he’d already been so far past it, it was a waste of time basically. Um, but it’s so hard to know what he may have missed in the middle of all of that.
So it was really tricky, but. We did, we’ve been in, um, online school for six years. He didn’t take like a graduation test or he doesn’t have a diploma, but he is far beyond high school education at the age of 13 right now. And so right now he’s not enrolled in any school programs. So we’re kind of on the cusp of finding out what’s next, what does that look like, do we find colleges that will try to accept him because his life skills are still autism level 2.
They’re still high support needs and he would not be able to integrate into a high school or community college setting with, you know, all of these adult people. He still has really low challenge needs at home. So it, it’s such a tricky fine line for all of us in our situations. Cause like you said, Joyce, every single child is different.
You know, with my, my daughter, it’s. She’s in fifth grade now and fifth grade is getting a lot heavier into writing, reading, math, and that dyslexia is really challenging. This is her first year back in school since a, a lot of us know we had to pull our kids home. And during that home period, I was able to enroll her in this same program my son was in, where she received an IEP.
She re, in fact she was diagnosed through the online school’s school psychologist came to our town and did the testing for us because I had made such amazing relationships with these people, these teachers over the years that the second I said, she has dyslexia, she needs support. They were like on it, on it, speech therapist on it, tutoring on it, IEP set, you know, and so it was incredible.
So those things have been, um, just a real blessing for us. And this year she was able to go back to school and luckily they’re, they’re being supportive of the needs that she has at this time. So it. It’s definitely, we’ll see how, you know, we move into future grades.
Joyce: So in your state, can I ask you a question?
In your state, does your school district pay for any private school, any of this online schooling, or does that come outta your pocket?
Sara: You know, luckily it was, it is free, so we weren’t having to pay for anything. Knowing what I know now, I really wish I would’ve held my school and my district to better standards for my son to receive his free education.
The hard part is that I have a legal background. I know what it takes. It also was the scary part that led me away from it knowing what it takes, knowing the fight I was gonna have to put up with. Being afraid that after I had gone through this fight, the people that I’d been fighting were then gonna be the ones to take care of my son and feeling like there was no good options.
That was devastating. Definitely. So, you know, it’s interesting now that he’s 13 and now that I have some, um, I know that there’s a zillion new programs, uh, been added, you know, in just in the last five years. So maybe we’ll try something in the future. Maybe we’ll find success doing something like that.
You know, we did do ABA for many years. We had bad, you know, experiences in the very beginning and we had great experiences and so it’s really a lot for people. I know that there’s a big. You know, wedge in autism with ABA and big, you know, fight about harm. And I think that with everything, even medical things, you know, when in, back in the thirties and forties they didn’t have the same medical procedures and things were done a lot, a lot rougher and a lot tougher.
And I think it, it’s kind of a lot to do, you know, with society today. Like we’re learning and we’re implementing better actions and better practices and we can’t just throw out an entire system when there really are, I think, within it, trying to change these stigmas, trying to change the practices in which they go out and collect data and things like that.
So I think things have changed.
Joyce: I agree with that. Um, it’s also about research. I think people just hear the negative. And just blocks it. Like, just generalize everything. And I was curious about ABA, so I am taking a course to become a registered behavior therapist. I need to understand it, how it is and/
You know, just like everything. Yes. It medicine didn’t start like, oh, happy. And you know, we, we did some crazy stuff, you know? We did some stuff that we we’re, you know, but we, we don’t just say, okay, that’s it. And we don’t go online and read something that doesn’t have any data. So like data that proves.
So yes, it might be some therapy was bad for many and I don’t discount that, but that doesn’t mean that it’s bad for everyone. Again, like you said, mental illness was treated horribly. Horribly. You know, and now we have made some changes. So for me, I always get it about therapy. My children are thriving.
My goal is that when me and my husband are no longer here, they can take care of themselves. And they’re thriving. For me, in your school situation in Pennsylvania, I, I fought for my youngest. My youngest is nonverbal. He only eats Ritz crackers and whatever protein I can put in this particular blue bottle that Walmart no longer carries.
So I am getting people, mailing me this bottle. With this particular blue lid. So for me, I knew that it, the school was not what my son needed, they couldn’t provide for him. So I, again, I have to count my blessings because, you know, I live in an area where I have multiple options.
I have different kinds of autism private school. And the thing about it that I learned is that not every autism private school, is for your child. So one will focus only on behavior, one will focus on this and one will fo. And because there’s so many ABA therapies and you have to look for the one that fits for you.
So for me, I tour, you have to send out your IEP and then those schools have to say, okay, this is not, we can’t provide for him. So I found one. Close to Philadelphia. He is an hour and five minutes away. And I was so upset about it. And I went there and I was like, with the, I’m not sending him, but I’m gonna go because, you know, and I completely loved the school.
I don’t have to pay for transportation. The school pays for all that the school district does. So I, I fought for him for that. Um, and I can say that he’s been there since September and I can walk outside with my son and he doesn’t run. I can call him, he can look at me and he’s now starting to babble. So I, the, the whole thing of.
The fear of, of listening to someone and not seeing it for yourself. I can go in there and ask questions. The IEP how they do it spoiled me so hard that I feel bad for the school district now because that’s my expectation now. Like the IEP, it’s, it’s quarterly. He passes, you sign, we move on, and then it’s actually digital.
So you can see the progress in his chart. Like, it’s crazy. So I know that I’m blessed, not everyone has the opportunity, but I also, when I talk to other parents, the fear of ABA therapy, like, what do you know? And no one can, no one can explain. So for me, if I’m gonna send my kids and I’m gonna, you know, have discussion about ABA, then I need to learn it.
So I, I have spending all this month trying to get the certification because for me it’s important to understand what our kids are going through. And if I am back it up with the science or back it up with the fact. Some ABA might not be good for your kids and some ABA might, you know, might be good.
It all depends. There’s so many out there. So many..
Sara: Watch your child See how they’re connecting with these people.
Joyce: And then be and be and ask questions. It’s okay to ask questions. It’s okay to ask questions. Sorry, but I’m like taking over .
Sara: Oh, you’re so great. I would say, you know, play therapy.
When our RBT left the company she had been at, we were with her for three years, maybe even longer, maybe like six years. We were with her when she left the company she had been to and we followed her to her next company. It was more of an integrated play therapy. Oh my gosh. The progress and amazing like growth that happened during that time.
First, it was our son’s first time having a male therapist. And really seeing that excitement and connection to have this male friend, they got so close and then covid unfortunately. But we felt so good with the progress he had made that we didn’t even feel like we needed to seek out therapies after that.
Like we’ve just, we’ve been fine for the last few years. He’s thriving. He’s thriving in the way we know he is at home. Yes, somebody might look in and say, Oh my gosh. Like all he eats is popcorn and ruffles potato chips. Like that’s not healthy. Like, that’s not thriving. Yes. Believe me, it is. There was a time when he wouldn’t touch popcorn.
Okay? That’s new.
Joyce: When my son finally ate a, uh, a Pringle, tears, tears was like.
Sara: You don’t understand until you know.
Joyce: He went from like, Ritz to Pringles. Yes. So I, so me, it’s a, so yeah, I can see like that for small victories for us, it might be something might be different from, you know, any other family.
But for us it’s something, you know, maybe playing a game. Like we like to play video games here. That’s what our kids like and that’s what we do. For you, for another family might be going out and playing sports for us, walking trails. Well, you know, we might get there and like half a mile trail will take us two hours because my son will be like, oh, I don’t know if I wanna walk this.
Sara: Yeah, exactly. Exactly.
Joyce: You find your joy and, and I think that’s as a family that like us, you know, it’s different, but I find that joy, I enjoy my family. I don’t see myself in any other, like, I don’t see it. I don’t see my, like I miss my, my kids are meant for me. I like quietness. I don’t like crowds.
Sara: It’s perfect. My husband too, that’s like his ideal quiet life, and I see, I see. I can respect so much of his needs for, for things now. And I always respected him, but I understand them more now.
Joyce: Yeah. But yeah, like my husband’s like that. So I think my husband, my husband has not been diagnosed yet.
And no, he, he says the same things that bothers him or the same thing that I have to do differently. I see it in my sons like the same way. Like the same sound that he makes sometimes. And I’m like, oh my God. But we start laughing. I’m like, there you are, are your boys? Yes.
Sara: There you are showing up. I see you.
Joyce: And it runs in our family, we have cousins, I have nephews that are on the spectrum. So it’s for Yeah. I, I feel like my home is the place where if you’re a kid is on the spectrum, come on over.
Sara: You’re welcome. You know, I was so lucky. Well, my husband, um, had a sister with Down Syndrome and so she, and we cared for her in her in the latter part of her life, and she was, I think when she lived with us, she was like, 50.
She was in her fifties, I think, and she had Alzheimer’s. She was it was, it was rough, but it also gave me this new perspective and idea of what it was like to have a non-verbal person, individual that needed 24 hour care. She was not, she didn’t mo she was incapacitated, so she didn’t move. Like you had to give her her water, feed her her food, change her.
Um, and she lived with us for about nine months, I think before like I, and at the time, I mean, I had a two year old, a four year old and a 13 year old. Luckily that was, uh, the thir, they were all, everybody but the four-year old was helping out and doing, you know, kind of stuff. But it really, really gave me, um, this understanding of, of much more patience.
And even though my son, like you had said, you learn the Sara before was a lot different than the Sara now, but I’ve definitely learned how my voice, my, you know, tone the words you say, all of these things that were just not as important, I guess. Before where like, my life lives by these things now.
Yeah. And, and detail. Detail counts. Detail matters. When I talk to them, it’s, it’s, I think it’s funny cause they call me out, but you said blah, blah, blah. Yeah, you did.
Or, oh, gimme five minutes. That gimme five minutes. That literally count the five minutes. Five minutes are up.
Sara: You better extend your time.
Joyce: So things like that, like our parents, it’s completely, it’s hilarious. So we we’re simply like, we’re like, okay, what would you say? What would you say, my husband, what would you say? Cause they’re gonna come back. So they’re like, know everything. Like if I’m gonna go on a road trip, yeah. Probably next month. It’s April that you said this month we’re gonna go on a road trip. Yes. Yes I did. Um.
Sara: Oh gosh. It is so true. Um, and it’s important. It’s important that we, even as tricky as it is, you know, keep our word so that that trust and that connection can still be important for those types of, you know, kiddos.
And I love that you said, like you do video games and things with them. I never, I grew up in the military and I never played a video game until I was like an adult. I don’t like them. I don’t care to watch them. I will, like, I’ll do it. You know, like I, I finally have got a, a little bit warmed up to where I’m like, okay, show me what you built in Minecraft.
Like, I’m interested now. I see how skilled you are at this and I. I wanna appreciate it. And I think that’s so important that we encourage parents to enter your child’s interests in order to bond with them, to have that communication, to have that fun and that, you know, even though our son actually doesn’t like us to be around him at all.
We’re, I, we’re kind of lucky that he says, I love you when he wants you to leave. I love you. It could be so much worse, you know?
Joyce: Yes, yes. Or I get, you know, are you done? I’m like, okay. Do you want privacy? Yeah, exactly. Yeah. And I think the problem is too, because, I mean, I’ll say I, we play video games, it’s because they’re so taboo.
You know, when it comes to other parenting sites or other, you know, influencers, like, you know, we take our kids, you know, playing baseball, my kid can’t see. Baseball land on his face, you know? That’s just the fact, you know what I mean? Like, he, he just, you know, he can’t see, he’s not a sport and that’s okay.
He does not have coordination and that’s okay. So let’s not shame the parent or the family that, you know, has a gamer. I mean, we have already known that gamers can make money in real life programmers. I mean, thank, that’s the things that we can focus on. So we played Roblox. I thought it was the funniest thing, and we got in there, and this is the funniest story, and I was trying to get into it.
Like, like you, I, I wasn’t sure. This, they all got together and banned me out of the game. And I got kicked out cause I was not following instructions how to make the pizza. So yeah, it was the funniest thing. And my daughter was online and she was crying, laughing.
Like finally, we got one on mom, like we got all the kids got together and ban me out of the game because I was not following a direction. But it’s the, but we have fun, you know. And we spend time together. We spend quality time together. I, I just feel like sometimes when we talk and like other families that don’t have kids in the spectrum are like, you know what, what do you guys do for fun?
Well, man. You know, connect four. Oh yeah.
Sara: We’re good here. Ok. You know, we found Jumanji. It’s a board game. We found the board game Jumanji and it’s really cute because it has all of these interactive pieces so it’s not just a sit down board game. Like you have to, like, if you get a challenge, you have to race to the end of the hallway with the people at the table.
It has some really fun, interactive things. Our son won’t, he hasn’t entered the realm of playing. We, we did play Uno and a few things over time that he’s done with us. He really likes music, so we just got a drum set for his 13th birthday and he has amazing perfect pitch and he, you know, can play. He’s been teaching himself music since he was like six.
Joyce: Oh, wow. So that’s impressive. Wow.
Sara: Yeah. So now he has his keyboard and his drums and he is just, you know, so happy, but our daughter gets onto the drum set and all of a sudden she’s a professional drummer. I’m like, what’s happening here? So, yeah. You know, finding those things that your kids are good at that they love that.
Yeah. Just like you said, can you, would my parents have ever bought a drum set? No way. Like I can’t even think, I can’t even picture your neighbors that would do that, you know? Our family is, based on a different set of values and foundations than other families. And we are so happy. And just like you, our house is quiet because it’s not filled with discontent and nobody’s ever like upset.
Yes. Meltdowns happen and those are loud. Those are different than lik disturbing, like negative noise, you know, kind of a thing. Um, it’s so different from that. So I just really feel like even though, you know, I’m at home with my son all day every day, I also have found meaningful relationships in advocating in starting my own podcast and being able to really connect with people online.
Let’s be honest, I might not have the chance to be able to go work at a law firm or be a massage therapist. Like I used to be and all of these other things. Like I don’t have that opportunity to do those things anymore. But I still need to connect with people and I still need to have close friends and good relationships and a sense of love for myself, you know?
And, and I found that this has really brought it to me.
Joyce: I, I agree. I feel, uh, I have mentioned before that I sometimes feel lonely. I can’t get a job, uh, a nine to five, I can’t, I’m trying to get the certification to see if I can work in a place just to get it. Just to say, Hey, I accomplished something this year.
But it does get lonely, especially for me, because, you know, my friends, they live far away, you know? So I’m reconnecting. I’m, I’m, I’m making sure that I, I go out and I did that last year was my goal. I need to make friends. I need to make at least someone that can understand. And I, I have been saying and, and, and I threw it out there.
I said, I need friends. And go to summer, we go to the pool and we meet the kids. We meet the moms with the special needs kids, there’s a bond there already. Like when you meet someone with that, that can understand you, it’s right there. So I, I get it. And I also, online you find amazing people.
You can connect with people without judging you, without, you know, there’s all someone out there that will listen to you. That I think that I agree with you. Like I started my blog and my blog was about something else not involving autism. And my story, unlike yours, was on, my daughter was not diagnosed until later after the boys.
Um, because she was a girl and girls were, she was quiet, she was shy, girl. You know? So the first time, okay, it was a different, you know, like, okay, what am I gonna do? Diagnosis? Hey, I, I wasn’t sure what I was doing. We were doing. So then the second one I was upset, um, because I still didn’t understand it, but I didn’t have a support system.
That said, Hey, it’s okay.
Sara: What are you gonna do?
Joyce: What are you gonna do? Or people in, in, cause you know, I was raised Catholic and in church and, you know, um, I’m no longer, you know, what did you do in life? What did you do? That this is happening to you? And I was like ping. I’m done.
So that was my experience. So going, I, I remember writing this post and it was Brynne. And she emailed me, and then another person contacted me. My son is in Spectrum. I can understand you. And I think that’s when I was like, okay, I found my group here that can totally get, when I say, you know, I, I am. So, you know, and that’s when I, I took advantage of the internet and, and met wonderful people that have kids in the spectrum that, that have multiple children with disabilities that get me or, and that work online because we don’t, I don’t wanna stay at home, not. I worked for 15 years.
I, I had an amazing career and I gave it up for my kids.
Sara: Me too. Exactly.
Joyce: And now, and then that transition alone, plus having to, I, I didn’t, it wasn’t a transition going part-time and then staying home. It was a boom, you’re done now, here I am a stay at home mom with children that need special services, and where do I start?
So then I started blog and started making money, but that wasn’t enough. Like I, I private insured wasn’t covering what he, they needed. So then I found out, hey, you know, Pennsylvania will pay for them, just get medical assistance. And it was the whole entire process. And I wanna go back to what you said about things are not easy, like when you apply for SSI or anyof it, it takes time.
And I think when I talk to other parents, they want things to be easy. It’s just a process. I mean, it might take a whole year. It took me a year and four months to get my son, my youngest son medically diagnosed. It’s a process, but it needs to happen because once that is in place, then more services and more doors open.
And I think that starting early, it’s, it’s the best thing you can do. Um, and that’s why I’m asking in, in your state and how it is. Because I know Pennsylvania, in where I live at, it’s amazing. It has services. It, it has the, the medical assistance loophole that can help you even if you’re a working parent to get your respiratory services.
Yeah. I am very blessed that I have an RBT and a behavior therapist that comes to the house, go to the community, we go to the pool. They go to the pool and, and, and I know that, but. I’m not special. You know what I mean? Like I went and there was opportunities and I applied. I had to sit there and wait for a year to get these opportunities.
But it happens. And I think people need to understand that yes, things are really rough right now, especially when it comes to respite services, but it’s getting there. You know, it’s getting there. And for me, if I’m gonna knock it, not understand what they’re doing, therapy, then I need to understand it.
So, to me, my personal goal was to get a certification and find exactly what kind of therapy my kids need. Because if I’m gonna, you know, advocate for my kid, now that they’re in different schools and different, you know, therapies, I need to understand what’s going on, too. Because the school is not gonna let you tell you exactly a hundred percent what’s going on either.
Sara: So true. So, yeah. Absolutely. Uh, and, and it’s been an interesting journey and I’m interested to see, you know, how the future will look. It’s so unknown for our son that is not in a school system right now, which any other parents or, you know, people, neighbors like probably knew they’d be like freaked out.
But I can’t, they can’t understand for a second what it’s like. And nobody’s ever spent the night here. They don’t know, like, we call it the moon schedule. Our son sleeps two weeks during the night, two weeks during the day. His biology is, you know, I tried for years to control his sleeping with all kind, you know, I, not too big into medications, but even just melatonin.
And when I finally, when my husband was diagnosed and I went, here’s this man who falls asleep in the car, falls asleep on the couch, falls asleep, you know, and he sleeps for these four hour stints. My kids’ just like him. He’s seriously just like his dad. Like I need to look at him and him as a whole person.
And tried to give him those same accommodations and nobody would, I mean, that’s just not logical to let your child sleep during the day. Right. But we did online school, like I could do work at any time of the day. I can, you know, I was willing enough to give up my careers. I’m surely willing enough to give up a few nights to teach my child in his more comfortable setting.
So yeah, it’s so unique and individualized for everyone.
Joyce: Yeah. I think autistic children too. My, my kids, they’re going into a phase that there’s no sleep. What am I supposed to do? Like I get up, we do stuff. You know, I, I, I have to accommodate them. I, I, I can’t think to my head and stop and say, oh, you know, not, this is not normal.
You know, this might not happen with other family. Like, okay.
Sara: Yep. I mean, whatever he needs at any time, we’re always available to him. We never make him feel like what he needs is unimportant because of the time of day. And it’s not like we don’t want him to have life skills, but at this point, he’s not going to be going to get a job at Pizza Hut or Google or anywhere else. He’s 13.
Joyce: Like he and also, he’s a teenager. And as I recall, I used to sleep all day. I still remember in this house in the weekend we get up at eight. Yeah, yeah, yeah. I used to listen to the radio till like the whole night, I forgot what it was called.
And I will stay sleep the whole day. And even in the summer, like I was 15, 16, we were night owls, me and my brother. And my cousins would come over and we will all night out and they would sleep the whole day and for hours like 10, 12 hours. So it’s just a teenage phase. Like, I mean, and for some reason high school here, it’s super early.
Like super early and teenagers can’t handle them waking up early, it’s just not in them. So I think, you know, I’m not trying to make a excuse, it’s just it is what it is. If your, if your child sleeps longer, imagine hours, it’s just hours are just. For some reason how the night and day confused.
Brynne: I had this awesome teacher in high school who like, I mean, it’s great when your family accommodates you, but like I woke up at, let’s say, it was like 3:30 4:00 AM every day. I went to church before school every day before school, right. And I was like 14, 15, 16. And it was like a rough schedule. And so my first period science class, I would sleep through it, but I was also like super good at science, so I didn’t really need to stay awake.
And the teacher knew that. And so like this girl would like get so upset that Brynne got to sleep through class. And he just looked her, he was like, when you can start answering every question correctly, then you can sleep through class and wake up at 4:00 AM every day.
Joyce: Yeah. But it’s just, it’s like, like you said, we just have to work like, you know, in the weekends.
Like we don’t go out some just weekends that we don’t go anywhere. And that’s okay. I don’t, I, and try to shame me for that. I don’t, I don’t, they don’t like going out like, what, where are we gonna go? Shopping. We don’t wanna, we don’t like spending money.
Sara: Well, that’s, that’s hard in, you know, in places, too.
And it’s interesting, I was just, just last night got a message from one of ladies in my community that said, Sara, the police just showed up at my house. I know which neighbor it was. I, I don’t know how to educate all of these neighbors. And so we talked about some ways that might be good. And she ended up writing a letter that was just like an, an introduction to her, her who her child is, and maybe some of the oddities, if you will, that the other neighbors may not understand that they do, unfortunately live in like a condominium setting.
And so shared walls and things. That’s unfortunate, but, You know, it was, it’s so true and so good to be able to take these types of education and these, you know, little bits of pieces of information to your neighbors. Many years ago, I don’t think I ever followed through with this, but I created like even Spanish ones for my Spanish speaking neighbors.
So that instead, you know, if my, if you see my son, if he, he, that was the time during a lot of eloping. If you see him outside of the house, please bring him home. Or call me right away. Right. Um, but it’s so, it, it’s so important that one of our favorite quotes is a little bit of knowledge, turns fear into understanding That goes for children.
Adults, no matter what. A little bit of knowledge makes them be more compassionate, more supportive. You know, even at times where we trick-or-treating, for example. Trick-or-treating for years was so freaking painful for the fact that I felt like I had to apologize every single door I went to. Oh, I’m sorry.
I’m sorry. I know he’s gonna ask you what your dog’s birthday is, or he’s gonna wanna come into the house to feel the fabric of the couch. Uh, I know he doesn’t want any candy. He doesn’t even like candy, but we’re still here. Trick-or-treating like, ah, you know, I’m sorry, I’m sorry, I’m sorry. Went finally and my husband was always like, stop apologizing for us.
You know, like, we deserve this just as much as them. And I was kind of always felt all of that pressure from them. Then one year I stuck a sticker on his costume that said, I’m autistic, please be patient. The neighbors were incredible. They let him ask the questions about the birthdays. They answered questions about what kind of car they drove.
They, they didn’t react in this, like, what? He’s not gonna take candy and go? Kind of way that they had years past. Now, hopefully we still do the same thing and they still respond with kindness and, and respect and patience with him. I, I know that a lot of people will say, Ooh, labels bad, bad. That’s horrible.
You know, no. A little bit of knowledge turned fear in my neighborhood into understanding for my child. He deserves that. He deserves to be able to walk around in his costume, even though he doesn’t understand the functions of trick or treat or even like candy or chocolate for that matter. Why shouldn’t he be able to have those experiences?
Joyce: I agree. You know, your son reminds me of, of my oldest boy here. He will always say, what kind of car do you drive? What’s your dog’s name? So he’ll get all like before he even gets ask you name. He wants to know everything like that. And then he remember you forever. Yeah. He’ll be like, oh, it’s so and so.
She used to have a so-and-so and he listens so-and-so. I’m like, oh, yeah, yeah, yeah.
Sara: That’s great. I just love that. Yeah. There’s, at this point, DJ’s, um, I think he was about four or five when he memorized the periodic table of elements. And with that became this really fun skill that I probably overexpose all the time.
But he’ll ask people what their age is and then he’ll tell them what element they are on the periodic table of elements. That’s fascinating for adults. Are you kidding me?
Joyce: And he, we’ll go to like, at that time we were, they were younger. I mean, we will go around. He loves cars. Like not, he loves the car.
Like he will be like, you tell him the model, he knows where’s built the city, the history of the city. So my neighbor, every, every Halloween will wait for him and he’ll be like, Okay, I gotta, because he always gets like different cars. I got this car and that will be the topic. Like, tell me more about this.
Once like he was like, oh my God, they’re finally out. So he was like, it’s chance to bond with my son. And then one year for Halloween, he was super logo boy, so I had to like, print logos cause he was into logos.
Sara: We did that, too! Oh, my gosh.
Joyce: And then we, we, we, we like put logos everywhere and he was super logo boy because he loved logos and he had car logos.
Sara: We did that on a little birthday cake! Yes! Oh my gosh, that is so great. We gotta share pictures.
Joyce: So he was super logo boy, I still have the cape. It was hilarious. And then that, so it’s like he, we will go and then he’ll have like a Ferrari. He’d be like, oh my God, you have a lo. And like he will wait for him because he’s like, I got a new car.
And then like, we will go at it. So I think it kind of bothers me when we try to do our best for our children. And it’s always someone that has, well it’s, it’s a label or they don’t know how, how do you like, if they don’t know you, how was supposed to know that? So now they know like my, like this is the first time in long time that I was able to take my youngest out.
Everyone knows. So we had a good time. We had a good time. It was good because we got to see old paras. We got to see, you know, old teachers that were like, oh my God, it’s amazing that he’s actually here, because he was a, I mean, he will run. We have so much in common. Seems like a I know, I know. Joy.
Sara: I know! Joyce! Seriously. No, this was a great meeting of minds.
Brynne: I think one of the things with the label things too is that I think some people are afraid of like, oh, if I call them autistic, or I call them disabled, it’s an insult. And then it’s like, wait a minute, is that really about my kid? Or is that about your view of autism or of disability?
Because knowing that somebody is autistic shouldn’t change your view of them. So anytime I hear someone who’s kind of like, edging away from labels, I’m like, mm. Is that a problem with my kid? Or is that a problem with you? Is that a problem with your world orientation?
Joyce: For me? I, I don’t know about you, but ask me questions.
Ask me. You are not offending me. Ask me questions.
Joyce: The, the, I I am. Okay. Just ask me questions. And, and, and I think that, The problem is because now that autism is out there in more, in kind of broad terms, now people gets confused because when they see my kids, they’re completely different.
Joyce: You know what I mean? So they’re like, okay, how do you, how do you doing this? You know? Like, I thought it was X, Y, and Z. Well, no it’s not, because, you know, one is in regular class, one, you know, it’s this and the other, you know, so they, they see my other son go into regular class, of course, with an aide, and then they see the other one who has a speech issue that can’t communicate very well, who doesn’t eat, doesn’t talk.
Has OCD has social anxiety completely different. Ask me the question, you’re not gonna offend me. And if you, if I, I think that it’s my chance to educate when I see it. Like if you’re asking me a question, I’m educating. You know, I, I’m opening doors for my kids in this world, but if you are not like that, if you, I don’t get offended if you say autistic, autistic child with spectrum.
It doesn’t bother me at all.
Sara: All the levels, whatever. Right?
Joyce: Whatever you wanna call level three one, it doesn’t bother me at all. You’re not gonna, it takes a lot to offend me.
Sara: And you know, I think that that is really, we had a situation in our community where it’s sensitive, so I won’t talk about too much of it.
I don’t wanna upset any, any listeners or anything. But it was a police situation. The boy is fine, but there, it was really scary situation. He was only 13 and they did handle it with lethal force and he is okay, but what a big eyeopener that just, you know, 10, 15 miles away from my house, officers didn’t know what autism looked like.
They didn’t understand that this boy was 80 pounds standing in the road having a total meltdown. That three dads could have gone out there and tackled him, right? Mm-hmm. Or just, you know, any, anything else could have been better than the outcome that happened. So during that time, I was so upset and because my son, you know, now 13, same age and much more severe than this boy, in fact.
And what would happen to him if he got out in the community? Are you kidding me? This is what I have to look forward to? So I said to my husband, like, I need a louder voice. Like I need to have a louder voice in my community. So I started my Facebook group, Autism Advocate Support Group. Which if you’re not in Joyce, I’m gonna send you an invite later.
Brynne: It’s a really good group.
Sara: Yes, it is so good. And I, I mean it’s, I can’t believe that just by word of mouth, it’s grown to, you know, 1100 members. And it’s amazing. I hold such high standards in this group. I don’t allow negative talk. I don’t allow anything like that. I allow love, support. You can post about having a bad day.
You can ask questions about having a challenging situation. And be greeted with open arms, welcome, loving support from almost every single member. And it, I can’t believe the amount of like, love that it has brought to me to know that these people trust me enough to be in this group. Number one, you know, they trust one another to respect each other so much.
But then starting the podcast, the same thing is like, I wanna be able to educate and to help my community understand the needs of my family and how they may look different. I was so lucky to participate in that same city’s, um, in the city I live in, in their local police training for autism back in October.
And such an incredible experience. None of ’em, I, I didn’t ever feel were like, oh, what’s going on? When is this gonna be over? They were engaged, they were interested. They wanted to know how to help. They want the information and we have to, and we have to keep that in mind.
Joyce: I think people do. People do. And the problem is that if you go out there in the world and, and assume that everyone is bad, then you’re not gonna get ahead.
I’m sorry. You’re not gonna get ahead. I think education, as I say, like when, when something happens that, that, I mean, like I said, I have many things that have happened that I, the old Joyce probably would’ve be like, what? I have to calm myself and then have a communication because I have to put myself in their shoes too.
I have to put myself in my son’s shoes. I have to put myself in other, in other shoes. Yeah. You know, and then have a conversation about it. I can’t just be about my feelings. My feelings, my feelings. You know it, that’s not, that’s not how it works. I’m sorry. It’s not how it works, but it’s about my son. What’s he say?
What happened? What led to this? How are we gonna solve it? I, I can’t go into the, the, the situation and you are gonna get fired. And this is, I, I, I just can’t, I can’t, that’s not the, that’s not gonna solve anything. And I think because society has always been like that, you know, let’s find the answer, do action now, and then ask questions later.
And, and that, I don’t think that’s right because they didn’t have training. Was it, can we solve this with training? Can we solve this by doing this? Like, there’s always a like, solve the problem. But I think too with police officers, like, where’s the training? Well, I’m gonna go and find out. I’m not gonna be out there and be the negative Nancy, and, and just, you know, attack.
Let’s find out and let’s correct this way it will happen again. And I think if we look at it this way, then when our kids grow older, they have a world that understands because they’re educated and, and they know how to welcome them. You know, like for me, One thing that I, I said to my old friends, you know, we used to have get together was, you know, every time there was, um, autism Awareness Month, I, I don’t, I don’t, you know, you see them, you see them, you know, sharing.
Uh, have you gone and asked a friend, an adult person with autism, a family with autism? Have you talked to them? Have you invited them to your house? Have you become friends? That is important when someone says, Hey, are you okay? Or Do you want me to watch your kids? Or, that is like, to me, most cherish thing for me as a friend that, I mean, my family does it for me, certain friends do it for me, but I just don’t like the, the fact that sometimes we say that we understand this is, from my point of view, having someone, but you don’t associate with it or you don’t invite that child to a birthday or you don’t get to know a person in the spectrum.
And for me, that’s what I, I always I’m woke about it. Like, yeah, we wanna say we understand, but we don’t do anything about it. We just go on social media and say, Hey, you know, oh, Autism awareness month. Yay. You know, but what have you done? Besides posting something about it, have you reached out to a family? Have you asked your son that this a little boy in a spectrum?
Maybe invite his mom over or see how she’s doing or be friends or something like that, that that’s more important to me personally than for you to share and tag me.
Sara: Yeah. Well and I, personally, feel like my role in I have in the, the last few years changed my kind of like, I won’t even a, I’m not not advocating for it, but I am saying that awareness has come now we need education.
Now we need action. So last, uh, April I, my profile picture all of my things autism action month, I’m taking action. I’m educating my community, I’m educating my family members that need a little bit more help. Sensitive subjects to talk about with them. Yes. Especially those older generations that saw Rain Man.
And so, of course my son makes sense to them. Right? Thank goodness. However, I also have a daughter and a husband and myself, right? And I remember the second I said to the police department, and I’m autistic too. This is what autism looks like. And their face. Just what? You know? And I was like, this is why you need this education so that you can understand the many, many facets.
And the many, many faces and the many, many behaviors. And one of my biggest things to say all behavior is communication. All of it. When, when, if we need to help a child, if we’re trying to address a behavior, let’s figure out what the communication is behind that so that we can help make progress of that.
Joyce: What caused the behavior? Yeah, what caused the behavior, what’s causing the behavior. Like that’s, that’s the thing that I always, I think people forget, like if we having a meltdown, what cost it? Like, what’s going on? To me, that’s, that’s important.
Brynne: Thank you so much to Sara. Be sure to catch her podcast and read her books and we’ll have all of that linked to in the show notes today.
Thank you to all of you for tuning in every week and for leaving a five star review of Mom Autism Money. Next week we’re welcoming back one of our favorite guests, Paul Curley, to discuss the passage of the ABLE Age Adjustment Act and learn what’s next on the legislative docket to make our kids’ financial situation more equitable.
We’ll see you then.