Episode 365- Grandparenting On The Spectrum with Jennifer Kaufman

The hardest part of “helping” a family after an autism diagnosis can be admitting that your old playbook no longer fits. Jennifer Kaufman knows that tension from both angles: she spent years as a principal at a school for children with autism through age 21, and she’s also the grandmother of an autistic eight-year-old. When her grandson was diagnosed, expertise wasn’t the missing piece. The missing piece was learning how to shift expectations, step back from the expert role, and show up as the kind of support her daughter actually needed. 

We dig into what grandparenting on the spectrum looks like in real life: respecting the parent’s lead at IEP meetings, avoiding unsolicited advice, and offering support that’s specific and proactive. Jennifer shares why “let me know if you need anything” often lands as extra work for exhausted parents, and how practical help like childcare, errands, or simply creating space for parents to reconnect can ease caregiver burnout and strengthen the whole family system. We also talk about vacations, routines, and why the most meaningful moments often happen when you follow the child’s lead instead of forcing a plan. 

Communication is a major thread too, including AAC devices, the idea that behavior is communication, and how autonomy grows when a child has reliable ways to say what they want and don’t want. Jennifer closes with a safety message every autism family should hear, especially around water safety and swimming lessons. If you care about autism support, neurodiversity-affirming family relationships, and practical strategies that actually help, listen now and share this with a grandparent or family member who wants to show up better. Subscribe, leave a review, and tell us: what kind of support has mattered most in your life?

Transcript

Welcome And Guest Introduction

SPEAKER_00 0:01

Hi, thanks for joining the SJ Child show today. I'm so excited to have Jennifer Kaufman. You know, we've just kind of started the conversation, and her energy is just so soft and friendly, and I'm really looking forward to finding out more about grandparenting on the spectrum and how we can not only support what you're doing and the cause and the mission, but also, you know, learn more about how you are navigating, you know, on that side of the United States and think see how things are working. So thank you so much for being here today, Jennifer.

SPEAKER_01 0:42

My absolute pleasure. Thank you.

SPEAKER_00 0:44

Why don't you give us a little introduction? Tell us a little bit about yourself, and then we'll just jump right into this.

SPEAKER_01 0:51

Sure. So where do I begin? I up until up until recently, because I just I don't want to call it retired, but I just sort of moved into a new realm in my career where I am doing this autism advocacy work full-time. But up until recently, I was a principal at a school for children with autism through age 21. And I am also the grandmother of an eight-year-old who is on the spectrum. And so I wrote a book about the experience from both sides of the desk. It's called Grandparenting on the Spectrum, a journey from both sides of the desk, because professionally I've got all this knowledge and experience, but personally, it was a different story. And there were a lot of surprises and there were a lot of shifting expectations that prompted me to write this book.

SPEAKER_00 1:45

You know, I hear that so much when I speak to professionals that have worked in the field and then are impacted personally in their family, and just that wow, this is not, this is not how I remember it. This is totally a different different animal, if you will. And being able to really see things, you know, in the shoes, walking directly in the shoes of someone, and especially as a grandparent, I think it's just commendable and honorable of you for you to help navigate the you know, unexpectancy, the isolation that can come from a diagnosis when you possibly haven't been exposed to that in your family before. So that's really just such a special, a special place and just thank you. Thank you as a mom. It is my privilege. My kiddos don't have such a special relationship. So when I see it and hear it, I take it more personally and more honor than I than a most, I think.

SPEAKER_01 3:04

Well, that's nice to

From Teacher To Autism School Principal

SPEAKER_01 3:05

hear. Thank you.

SPEAKER_00 3:06

Yeah, absolutely. Tell us about kind of that your journey in the professional side. We'll we'll go there and then we'll kind of you know go into the experience and how it changed everything. When did that start for you? And how did you end up getting into that kind of a job?

SPEAKER_01 3:25

Oh my gosh. Well, I had always wanted to be a teacher. I mean, I was little, little, little, and I used to have little books about teaching, and I wanted to be a teacher. So then as an adult, I went and I got my degrees and I started teaching. Technology was always a huge focus for me because I'm a bit of a computer geek myself. And I went from teaching eighth grade and tenth grade English classes, and that became teaching computer classes. And I started looking at it and learning about assistive technologies that help to support learners who needed that support. And I used to explain to my kids, my students, that you know, you might need a program to help you read a book because maybe your eyes aren't communicating with your brain in the same way that your friends are, but it says nothing about your intelligence. And I would say to them, you know, I wear reading glasses, says nothing about my intelligence, it just shows that my eyes don't work talk to my brain the 100% either. So from that, you know, I started supporting teachers and using assistive technologies, and I really liked having that kind of impact in a broader sense. Um that prompted me to go get my principal certificate. And I went and I did that and found myself working in special education schools, kids with all sorts of challenges, medical issues, but autism kept springing up, and I seemed to have be have been gravitating towards the neurodiverse student populations. And I found myself a number of years ago with this opportunity to work at a school for kids with autism, and it was just something that I jumped at, and something that you know, I found myself working with just absolutely brilliant minds, people who uh knew how to work with kids with autism and how to get them ready for life beyond school. And it really it changed me. And then when my grandson was diagnosed, yeah, maybe four or five years ago, it just sort of all came together in a in what I thought was a beautiful way because

When Autism Becomes Personal

SPEAKER_01 5:45

it was bringing so much knowledge. Yeah. But little did I know there were mistakes that were going to be made because it's one thing to have all the knowledge, but when you have somebody in your family, and when it's your daughter's child, she's not necessarily looking for a school principal, she's looking for her mom, right? Yeah, and you know, for me it was all about shifting expectations, and that's what I write about in my book.

SPEAKER_00 6:12

Yeah. You know, building a framework in a school and building a framework at home are totally different. They have different aspects, different goals, different measured, you know, kind of success along the way and challenges. And so it that makes sense that you're like, I'm ready, I'm ready. And then you know, you kind of dive deep down, and you're like, wait, now I'm really in the deep end, and I am not quite sure, like that. I was ready for this.

SPEAKER_01 6:42

But what and I sort of got to that point where of course I'm gonna go to the IEP meeting. And my daughter was like, No, you don't have to go. I was like, What? And realizing, you know, she wanted to be mom at the IEP meeting, and that's what I needed to support, versus I need to go to the IEP meeting, right?

SPEAKER_00 7:04

Well, and how interesting you would have said shifting perspectives, not probably realizing your own were also going to have to shift in that. Absolutely, yeah, absolutely.

Shifting Grandparent Expectations

SPEAKER_00 7:16

And let's talk about that because I think that's a huge thing, is that when I just humans in general, I don't think are you know, we don't come with all the knowledge for a situation at hand, and sometimes when we're faced with those situations, it can be daunting, it can be overwhelming, it could feel like uh a negative experience rather than a positive experience moving forward. And how do you think in do you kind of help parents or or in that situation really understand that change of perspective? Because that's a hard one to address with these people.

SPEAKER_01 8:00

Sure, sure. And what I really looked at was you know, what is a grandparent? Grandparents go into this experience with all sorts of expectations of their own expectations based on raising their own kids, and like I have all this knowledge, I raised my own children to adulthood. They have grandparents have expectations based on what they know of a grandparent. Maybe they had a lovely warm grandma who they baked cookies with, or they a grandpa who they're out playing ball with, or vice versa, and so they come into the experience with all these expectations and what they're going to look like as a grandparent, what they're going to be like. And those expectations sort of need to be tossed out the window and changed and shifted and adjusted to meet this the situation that is the reality versus what they want, you know.

SPEAKER_00 8:58

You know, it's really hard even today. It's been 16 years in our own experience, and I don't know that I've ever asked that directly. Like, could you please throw out all of these expectations and just look at the reality? And I that's a really great, like, kind of challenge, if you will, that you know, I'm gonna think about because it's so hard when you are in a family dynamic and other outside members or even you know, neighbors, church members, you know, work members don't understand and make judgments or or just have their own idea of of what your unordinary life looks like. Because let's just say that for sure. Like, I I kind of always joked that you know, the corners in my house are round and not corners because it doesn't make sense for us. Like, we don't have pointy corners, we have round, and that's not true, but it's like you know, it's it's kind of what it's like. Like our our life does not look quasi-normal, if you will, the drier setting. It actually looks very, very colorful and very full of life in every way. And I think that it's something that we're learning to teach how to embrace so much better.

SPEAKER_01 10:33

That's great. That's great to hear because a grandparent who shifts their who understands the need to shift their expectations and to follow a parent's lead versus you know inserting themselves into the picture can really be a game changer.

SPEAKER_00 10:50

Yeah.

SPEAKER_01 10:51

Really be a game changer. Yeah.

SPEAKER_00 10:52

Oh, I'm no, I'm so happy to hear that's you know happening for you guys. Absolutely. And it also, you know, the relationship that the intention that you put into building that relationship as a grandparent with that individual, you know, I really think that that is something so sacred and so has to be so meaningfully done. And I don't think people value that as, and I shouldn't say that in my life, I'm not finding that the people around me value that as much as I feel like it should be valued. So I love you know, organizations like your own where it is really pulling the whole idea that it takes so much more than just mom, dad, and some siblings to help navigate to when you have multiple children on the spectrum at home like ourselves. Or my husband and I are late diagnosed, our children, you know, helped us get to this journey. They helped us see where we were at that we couldn't see before. It's just such a beautiful thing. And and so I hope that in going forward, I will always just be willing and open to get to know the individual, no matter what their you know, life looks like.

SPEAKER_01 12:20

Yeah, yeah. I you know, I also say to grandparents and other family members that you can be there as a support system, but actually offer the support, you know, and listen to what is needed. And sometimes somebody thinks that they're doing that they have good intentions and they're offering the help, but they're not like they're putting the onus on the parent to tell tell me what you need so that I can do it, like truly be engaged as a as a family member and look at the situation and say to yourself, Well, these people haven't gone out together alone in months, and maybe, maybe saying, Hey, Friday night, bring your kids over to me, and you just go out and don't even give it a second thought, or stay overnight, or you know, whatever, whatever is needed. Hey, I'm in the grocery store. What can I pick up for you? Like just that simple phone call to be proactive and to be there and offer yourself as that resource can be a tremendous help to a parent who is who's struggling day to day, right? You're you're dealing with it every single day. So I absolutely wish I had that.

SPEAKER_00 13:38

I think you know, in our journey, we've are lucky to have siblings and a kind of friend of one of our children has just come into our life and really almost taken the burden off of us. And we've in the first time in 16 years, have been able to go out together, and we know that everything's okay at home, that this extra person who has had no experience prior to has entered with their whole heart and just blown us away in kindness and just like humanity, you know. Sorry, and just really like, yeah, like you said, just kind of given us this like wow, like we can go through a drive-thru together. Are you kidding? Like, we can go, like I love to bird watch, so we'll go take my binoculars and stuff and go look at some birds, and but it's been uh it's been decade, it's been over a decade. That's a lot of time that has been sacrificed, and not in a bad way, like a you know, bad section, given like a gift, truly, yeah, yeah. So we definitely like take advantage, don't take it for granted, but take advantage of when we can't take it.

SPEAKER_01 14:58

How different, how different is it? Like somebody saying to you, hey, let me know if you need anything, versus go bird watching, I've got it. Saturday morning, go bird watching.

SPEAKER_00 15:10

It's like reliving again, literally, it's like getting ourselves back to you know who we were, because it's been 22 years, and I think we deserve a little break together once in a while to remember what we've been timing for. So yeah, important. Yeah, definitely.

The Book And Unsolicited Advice

SPEAKER_00 15:30

Oh, and so when you started writing the book, let's talk about kind of your verb, like what got you going on on why people needed this information.

SPEAKER_01 15:45

Well, I was actually looking for this in for this information, but I just didn't find it. I mean, there were there were clinical guides, and this is not a clinical guide. This isn't going to help you figure out a diagnosis. This is this is just sort of me sitting down at the coffee table with you over a cup of tea and just talking about my experience and talking about, you know, the fact that providing your opinion, even though you as a grandparent have raised kids and you have a lot of knowledge, but providing those opinions when they're not really asked for is a problem because parents of neurodiverse autistic children they are receiving opinions from the grocery store cashier, from their pediatricians, from the internet, from friends, and and their mom, their dad, that's the last person they just want an unsolicited opinion from, right?

SPEAKER_00 16:42

Yeah, absolutely. Yeah, it can it can really be such a learning experience too when you have like an extra person to go, you know, on a vacation with. There, you know, there definitely were a couple times where we were able to take just kind of a a trip to a local place and and we have, you know, that and grandma came and and you have that extra hand, just like knowing that someone's gonna be there. But at the same time, like yeah, you have to definitely have, I guess, as a parent, and I love what you're saying about you need to listen and really like respect the family's kind of flow. If it's not something that you agree with, like stopping it is more harmful than allowing it and trying to watch or join.

SPEAKER_01 17:48

Yeah, absolutely. I think that you just have to be deferential to the parent of the child, just like when you were raising your kids, you would you would wanted that same kind of respect. And it's funny that you mentioned vacations because every year my daughter and I, and her husband and my grandson, we go down to that land of the mouse in Florida. And the first couple of years, actually, really on the first year, I got down there and I was struggling because I'm like, but I really want to go to that park, or I really want to go try that restaurant. And then again, it was through a process I realized that this is not my vacation. I'm not on vacation and my daughter's on vacation. This is me being there as a support system. And once I shifted that focus and shifted those expectations, it made everything so much easier because I was I realized how lucky I was to be there. Yeah, and I realized that every moment being able to support them in their vacation was just sort of a gift back to me because I just enjoyed it and it wasn't I could take my own vacations sometimes, but this was about being there for them, and yeah, every every vacation since that one has been great.

SPEAKER_00 19:16

Oh, I love that. No, I love the way you just like honored showing up for them. It just I hope that it happens more than I see. Please tell me it is public.

SPEAKER_01 19:30

No, give me, give me, give get grab my book, and you could give it as a gift to to you know, grandparents uh day, I believe is in October.

SPEAKER_00 19:42

And there's nothing wrong with giving a grandparent a book just because you want to give it to them.

SPEAKER_01 19:46

There you go.

SPEAKER_00 19:48

Grandparenting on the spectrum.com is Jennifer's website and probably where you can find the book, if not um on other sites that I'm sure that it exists. But please definitely go and get a copy, especially if you're a parent. If you're a grandparent listening, please, I would love to hear your thoughts and and maybe write to me and and let me know how it changed your relationship with your child, with your grandchild. I would love to know. And I'm sure that you hear those

One On One Time Builds Trust

SPEAKER_00 20:25

stories. Tell us a little bit about that.

SPEAKER_01 20:28

Oh gosh, it it comes back to me when people read my book and they they make those shifts, and it's really exciting to hear um because I know how positive those shifts were in my relationship with my daughter and my grandson. I just got to spend the the what last Saturday just one-on-one with my grandson, and it was like the most wonderful thing. For as much as I love his his mom and you know that whole family, it was just like magical. It was it was great, and there's just something about it that that one-on-one time is just precious, and if you can evolve to that point where you've listened enough and you've learned enough and you're able to support your grandchild one-on-one, which is not always easy to do, it's a great goal to work towards. And it changes, right? The needs of an autistic person can change from day to day, and things that might be high-value items, things that might be really and activities that might be really things that we're looked forward to next week. It might be something completely different, and accepting that and like finding the fun in that and finding the joy in that, and not regretting. Oh what, we can't go to that park anymore. What do you mean? No, that's let's find something else magical to do.

SPEAKER_00 21:57

Yeah. Oh, I love that perspective. It's so much healthier, and it just leads to nurturing such a positive relationship that is, you know, showing especially that individual how much value and respect that you have for them and for their individuality, and not placing expectations of, like you said, oh, we can't go here. Oh, you don't like that kind of food or whatever it might be. I think that's such a good reminder because we're all just so individual. And I think that oftentimes we forget that the other party is on a completely different journey. They might be right next to us, but they're still on another journey, and and being curious and like kind and loving about how you can join or be a part of that rather than how you can help change their lives to be more comfortable for yourselves. Right.

SPEAKER_01 23:09

Exactly. Exactly. You have to really be tuned into where your focus is. Is your focus on your own wants, desires, happiness, all of that? Or is your focus in what's going to make you happy to see the right kind of support being given to your grandchild? And if you can be part of that support, it is it's like I said, magic. It's like I look at a lot of this as magic stuff that just happens and and then that joy and then happiness when it works out is the nothing is better than that.

SPEAKER_00 23:44

Yeah.

AAC And Why Behavior Communicates

SPEAKER_00 23:45

How are your I and I don't hope it's not too personal, but as far as like communication goes, is he speaking, non-speaking? Like as what kind of communication support do you use?

SPEAKER_01 24:00

So he was non-verbal for a long time. And then in the past few years, he started using a communication device, an AAC device, and his tablet went with him everywhere. His communication has developed to the point that last weekend it was funny because he was like making us laugh. His name was like other family members, not his own name. And we had a ball and he was laughing about that. And it just made me see that like he that that journey is happening, that growth is happening, and it's ghostly to my parents at school. Like it's not a race to a common finish line, it's really just your own, your your unique journey and your grandchild's unique journey. And in terms of the learning, you know, the communication as it develops is a nice thing because behaviors are communication. And when they have alternatives to acting out, and they can tell you what's wrong or what they don't want to do or what they do want to do, those behaviors decrease, which is nice.

SPEAKER_00 25:14

Please listen to that audience. Behavior is communication. I repeat, behavior is communication. Be watching, be curious. I think curiosity is such a key element to just lending a good guide to your individual, being curious, like, what are they really into right now? What are they leaning towards, you know, as far as their foods they're liking? Will they try new foods? My daughter can get her brother to eat anything. You know how many years we've been trying to get him to eat one anything? She's like, Oh, try this. Oh, try this, oh try, and oh you know, and he'll usually say, I'll save that for later. And he'll keep him back to us. That means no, I don't like it at all. But it's so great, and just this like incredible relationship that she gets to have with him. We get to see, you know, we don't get to have that same type of relationship, but we are honored and so blessed to be able to see it, you know, and and see the just she's two years younger, but she's always been his big little sister, you know. The very eager to kind of like you said, I think that she really just wants to be a mom someday. I always did too. I always wanted to be a mom, kind of like you wanted to be a teacher. You know, I just always was just new. I I was an only child, so in my own heart, it was like this is how I fulfill my life and not feel this lonely kid thing. Right, sure. And it did, it is so fulfilling. It's the best, you know, best part of my entire existence. And I'm I'm so lucky to have learned and to be at this point where I love following their lead. I want to learn how to how to guide them by following them. And I know people might think that that's confusing or weird to say, but it's it's the coolest relationship that I never had that I don't think that my oldest had the opportunity to have because it was based off old parenting styles that you know came from our a little story that just happened not too

Following The Child’s Lead

SPEAKER_00 28:00

long ago about following leads.

SPEAKER_01 28:03

We I have a little shore house down at the Jersey Shore, and I was out on the deck, and the deck overlooks a water park of all things, and for years my grandson goes out there and he is he looks at the water park, doesn't really say much about it. You know, he likes to go to the boardwalk or the beach, never said a word about the water park. And I was alone with him last week and I heard, let's go water park. And I oh, okay. And the water park's really expensive here. I mean, it was, you know, $45 for a day. And I said, and I didn't even know if he wanted to go to the water park for a whole day. You know, we could walk in there and he could decide to leave. So I said, Well, let's go to the water park. And we held hands and we walked across the street to the water park. And I went in and I said to the manager, I asked for a manager, and I said, Hey, you know, he's been looking at this water park for four years. Would you mind? He finally mentioned the water park. Would you mind if we just walked in and walked around? And they got someone to like go accompany me and the three of us. We walked around, and my grandson sort of splashed his feet in the water. He was very amused by all he saw. And then we walked back out, and I said, Do you want to go get your bathing suit? We can go back to the water park. No water park. Okay, and we walked back to my house and spent the rest of the afternoon doing something else, and it was wonderful. And I felt, you know, it was such a success and it was such an incredible thing. And he advocated for himself and said, No water park, yeah. And and that's okay, and that's where you find the magic, right?

SPEAKER_00 29:53

And thank goodness, think hands up to this water park people that let you go in and you know, because we here have a big amusement party a day to go and we got our kids' season passes, our olders, and so it's been wonderful. Oh my gosh, but that's so interesting. You said that because we've been dropping them off every day, and he hasn't said anything. He hasn't said, when can I go to Lagoon? When can nothing? There hasn't been any mention. And yesterday we drove through the parking lot of a little bit closer to the rides where he could actually see people on roller coasters. And I noticed, you know, him kind of taking stock of what was around him, and he never said anything. So we do have our family passes ready for that day he wants to go. And but like you said, we don't know that it'll be just a walk around and walk out and get me back home or get me back, you know. I gotta get back on the internet, or whatever. So, you know, it's much more YouTube related, but yeah, so uh, but what a magical experience, and I'm I'm just really proud of that. Like you said, New Jersey really does sound like a really great supportive place of of good resources and and a community that really wants to help the autistic community thrive as a whole.

SPEAKER_01 31:18

Yes, I I shout out to New Jersey because the resources and the support systems that are in place are are really excellent.

SPEAKER_00 31:28

I love that. And you know, for those of you who are listening, if you are in the New Jersey area and you don't know that you have resources available to you, Jennifer Kaufman is is also there. You can go to grandparentingonthespectrum.com. I'm sure that there's a connect tab or somewhere if you want to connect with her. You're always welcome to reach out to me through the podcast at SJchildshow.com or gmail.com. Rather, don't forget that part. Um and you know, you can find me on my socials if you have any questions or want to reach out. It was so wonderful to get to know you more and to find out more about grandparenting on the spectrum. And I would love to get a copy for my family as well, so that would be fantastic, very helpful and just a beautiful gift to grandparents and to your own daughter and and

Water Safety And Final Takeaways

SPEAKER_00 32:25

you know, son-in-law and grandchild as well. So thank you for all you do.

SPEAKER_01 32:30

If I can leave you with one other thing and one shout out to the grandparents, if you can do it, if you can afford it somehow, get your grandchild swimming lessons. Oh I always end with this because 93% of accidental deaths among people with autism involve water and drowning. So I want to say that statistic because it's such a shocking statistic. And if we can get our kids swimming lessons, that is a great start to preventing that.

SPEAKER_00 33:08

Absolutely. Oh, I love that advice so much, and I couldn't agree more. My kiddos have had swimming lessons, and you know, my son knows how to float, it's the best thing he could know.

SPEAKER_01 33:22

That is great. I'm so happy to hear that.

SPEAKER_00 33:24

Yeah, me too, me too. We started well, and we were so lucky that we had a para from one of the schools that then worked at the community center near us, the community rec center, and she did one-on-one with my son. And then she was like, Oh, yeah, his little sister, of course. And so then the little sister got free lessons out of it, and oh, it just she was so wonderful. They all they loved each other, you know, and just made such a beautiful experience. And for maybe three summers in a row, so it was such a great, great thing to do. It's good to hear. Good for you. Yay! Such so much. Yes, and it's thank you. I really look forward to staying in touch with you, and I'm just so grateful for the journey that you've been on and the value you're sharing resources and and everything. So thank you. Thank you. Take care, Sarah.