Essential Parenting Tips For Autism: A Romanian Mother's Journey

This episode explores the journey of supporting a child with autism through the experiences of Diana Danu and her son, Gabi, emphasizing the importance of individualized approaches, strong communication, and parent advocacy. Diana shares how mentorship and practical, experience-based guidance helped her better understand strategies such as building joint attention, encouraging communication, and making therapy engaging so skills transfer into everyday life. The conversation highlights the critical role of coordinating efforts among parents, teachers, therapists, and BCBAs to ensure consistent support across home, school, and community settings. Financial challenges are also discussed, along with creative ways families seek funding and community support, including nonprofits and sponsorships. A recurring theme is the value of connecting with other parents, whose shared knowledge and experiences often reveal resources and solutions that are difficult to find elsewhere. Ultimately, the episode reinforces that parents are at the center of their child’s progress, and that patience, persistence, collaboration, and small daily steps—combined with maintaining joy and a sense of humor—can help children continue developing skills and reaching their potential.

If you're interested in joining our private Facebook community for parents and caregivers seeking residential options, guidance and peer support for profoundly autistic adults or adults with complex needs - click here! 

Transcript

Mike Carr (00:05):

Well, welcome back this week for part two of our discussion with Diana and her son, Gabi. And Diana, for those of you that didn't tune in the first episode is in Bucharest Romania. And you can just imagine some of the challenges that she's facing, many of the same as in the US, but some are quite different. So where we want to pick up is you were talking about your mentor and how that's really helped Gabi. And also some of the disappointment you had at school with him not necessarily challenging him as much as he wants to be challenged or you feel he should be challenged, but also not pushing too hard. So share with us any experiences or stories that you would like to from that point.

Diana Danu (00:43):

On the mentoring side, what was very interesting to me was the fact that prior to my experience with Damien, when he would speak to me like parent to parent, the discussions that I had with other parents were so to speak superficial. We would speak about some of the challenges we have at home or in school or even taking him from location A to B if we were to use public transportation because this is what we do mainly in Bucharest and lots of people crowds would sometimes trigger a reaction or another. And when I finally got to speak to a mentor who knew both the parenting side and the therapy side was eyeopening because to every challenge, not only that he could provide the theory behind it, he also had the practical experience. And he was very generous in sharing stories from his own family, which sometimes just were eyeopening and just clicked.

(01:34):

And I would come home from the sessions that we had because we met sometimes in person, sometimes on video calls. And I would come back and be very excited to speak to my husband and to explain to him like, "You remember that? This is why. This is why." And it was so exciting. It just sparked so much interest in learning more and being able to do more. And some of the things that he taught us were nowhere to be seen. And none of the therapists that we had worked with talked to us about the importance of joint attention. The fact that the child would see something interesting, would turn to you, would catch your eye, would show it to you and then would see or would wait to see if you saw what he wanted to share with you. Gestures. Gabi learned gestures with us.

(02:11):

He learned to point, he learned to clap he learned. All of those things seemed that they were lacking. Obviously we knew him once they were pointed out to us, but none of the therapists mentioned that. And it wasn't difficult to do that, but there were little tricks. Hanging something unexpected from the ceiling for Gabi to see, not be able to touch and want and be like, "There, that's the thing I want. " And then he'd start pointing and he would be like, "Wow, this was magical."

Mike Carr (02:35):

So one of the things you mentioned in the last episode, and I think you're sort of alluding to here is how important it is for whomever's working with Gabi to really understand Gabi and your situation and what your goals and aspirations are. And I know we have a lot of folks in this country that put their kiddos in the school system and they aren't quite as engaged as you are. And they don't realize that it's more of a structured environment and it's wrote and there's not that personal centered plan. And so every student in special ed pretty much has to do the same thing. They have to sit for the same amount of time. There is a little bit of visualization, but it's not as tailored as it sounds to me you've been able to accomplish with Gabi's program. How big a deal has that been and what lessons have you learned?

(03:21):

And maybe a couple specific examples like just the fact of gesturing, right? Gabi might've been the only one in a class that really benefited from that learning, but are there other examples or just in general, what would you coach parents on with respect to convening and engaging the therapist, the teachers, the school system, the afterschool care with respect to really knowing your child? Any learnings or suggestions there?

Diana Danu (03:47):

My best suggestion or what has worked the best for us is to have a permanent channel of communication with the school administration. The school that Gabizco is attending has classes from zero, which is the initial, the first graders through to eight. And he just started school last year in September. So our first step was to meet to the administration, speak to his teacher, explain his plan, explain that he has a team working with him, explain the fact that his BCBA will visit on a monthly basis, classes that Gabi's attending. And we'll come back to both us as parents, to the therapist that is helping him, who's helping him in class, and to the teacher with small tweaks and suggestions. A recent example that I can give to you that showed me how important having someone coordinate the entire team happened a few weeks ago when the therapist said that the PT class, which is usually fun and lots of running around and balls and playing a little bit of basketball here and running around came overwhelming to him.

(04:42):

But the therapist wanted to keep him in class because he's there. He knows that he has a schedule to follow. And then eventually he gets his breaks and his rewards. We assumed that we just need to keep him in class. And so it happened that the next day after this ... Well, he didn't have an outburst, but it was obviously that it was too much for him. PCBA happened to be on his monthly visit and the advice to get him out, just simply give him a break when he needs to pop a break and explain it to the teacher. It went very smooth afterwards because once he had his little sensory break outside of that very large crowded place, he could come back and was able to comply with whatever other tasks they had at hand. So my best suggestion is that continuous contact with administration, with the teachers, with the entire team really helps with the interest of the child at the forefront so that everyone can both understand his challenges, but at the same time, not let him just run haywire or get completely dysregulated because no one understands what's going on and is rather reluctant to take any action.

(05:47):

But once we had the BCPA's understanding and explanation, everybody got on board and everything went really smoothly afterwards. I think

Mike Carr (05:54):

One of the things you mentioned is so important, and that's don't try to do it all yourself. If you can find someone to coordinate the team, right? You can still be as involved as you want to be, but I know in our case, Kay and I both had full-time jobs. And then Kay's second job was taking care of all of Michael's stuff and I helped, but not nearly as much as Kay's involvement. But if you can find a professional, a BCBA or someone that's got some behavior training and background, and they have the right personality so that they can get into the classroom and be that helpful assistant or that guider, that counselor, not someone that's trying to use SERP teacher's role. It is almost always going to work well because as you said, special ed teachers are overwhelmed. They always need help. The school district may be a little bit concerned about an outsider coming in, but once they understand that that ider's trained and understands your son or daughter and really provides the guidance, the assistance that makes the classroom time less disruptive, more positive, it's all win-win for everybody.

(06:54):

And I think for the moms and the dads out there that say, "I can't do what Diana has done. I don't have the time, I don't have the skillset," the more you can do, the better, right? You can't give up all responsibility, but also trying to find someone that can really help you out is just hugely important. And this sort of brings us to the next topic, Diana, which is this isn't free. And so how do you manage that? Because money does make a difference here, unfortunately, folks. And I know in Romania, you don't necessarily have the same supports that we have over here in the US with waiver dollars and everything, but how have you navigated that whole financial challenge?

Diana Danu (07:32):

Well, there is a legal framework where in Romania, you can't really get reimbursed for your expenses that are for therapies, but you can go to centers who have contracts with the national insurance company and they would get reimbursed through a national plan. National plan for special needs/autism reimbursement was approved a few years ago, but unfortunately there's still quite a lot of bureaucratic hurdles and most of the funds for therapies are out of pocket, which was our situation as well. Obviously, like any parent, we were eager to as much as we could. And again, through discussions with other parents, we found out about this opportunity that allows for tax credits to be offered by businesses and even by private citizens as employees. And there is a process where we founded basically a nonprofit organization where we can request and obtain sponsorships. And we did that last year to our great surprise and appreciation.

(08:30):

We received a lot of pledges from former colleagues, former employers and friends and neighbors. So we're really looking forward to able to use this money both for therapy, therapy sessions that we need, but also have a bigger vision for this not- for-profit organization that we founded because as I mentioned in the beginning of the podcast, there are many lessons that maybe seem obvious when I discuss them now in hindsight, but I wish there was someone who could have told me those things early on and maybe we could have saved some time and Gabi's progress would have been in a different place. So if I were to be able to share this knowledge through this nonprofit with other parents, with other families that are just beginning this road in Romania, I will be really happy and feel that this community that has given so much to me, to a certain degree, benefit from the little knowledge that I gained along the way.

Mike Carr (09:24):

So this is super exciting. You mentioned several things that I think are these nuggets of gold that the parents should listen to and benefit from, one of which of course is, and it seems obvious, but it is hugely important in your situation. It certainly was in ours too, because they're things you're never going to find online. They're things you're never going to find using AI because they're unique to your area or your state or in Romania, your country. And so talking to other parents that have gone down the same path that have a Gabi, but maybe a little bit older. And for instance, in the US, the waiting list for federal dollars for Medicaid might be 15 years, 20 years, which is just unheard of. You have to get on the list when your child is four or five years old. So when they age out of the school system over here at 22, you have some financial support.

(10:07):

So a lot of folks try to get on the list. There are two lists over here. There's the HCS and the class list, and whichever one comes up first, they're all over, but they don't necessarily know about a diversion slot. So over here, a diversion slot is if you have medical necessity, like in our case, our son has seizures, he has PICA behavior, he has some other challenges, he's nonverbal. We've been on the list for 14 years and we're spending a whole lot of money hiring all these therapists and the BCBA and everything else out of our own pocket. And we found out from disability rights, which is an organization in the US that, well, your son probably does qualify for diversion slot out of medical necessity, and they got us moved to the top of the list. So you were talking about all the bureaucratic rigamarole that you have in Romania, and there's I think an equal amount probably or close to it in the US, but talking to parents and talking to people that have been down the same path, you might find a way to get funding, to get sources.

(10:55):

Over here, there's something called an ABLE account. If folks that are listening to this and never heard what that is, you should investigate that. That's a way you can put aside some money and avoid some of the taxes. There's also social security over here. There are different sources of revenue. And one thing we've learned is never, ever feel guilty about getting help, financial support, because there's not enough money in the world to do everything that you would like to have done or help with for your child. And even if there is, let's just say a genie comes along and the magic wand is waived and you get all the money you want, what you're doing is sort of the logical next step. You can't do it all up by yourself. Abby grows up and ages out of the school system, you're going to be with this challenge of, okay, well, what's next?

(11:35):

And that's sort of where we're at in our life is we can't take care of Michael forever. He's going to outlive us. And so the idea is, well, then do you find another organization that already has a program in place that you're comfortable with? Or in your case, and in our case, do you start a nonprofit so you can provide services that you know you're comfortable with for your own son or daughter, and that maybe even accommodates residential needs and all that kind of stuff. So what is your dream for your nonprofit? Because I think sharing your wisdom with others in Romania is something that we've seen other people over here in the US do successfully. What have been the biggest goals? What's your vision? What have been some of the biggest challenges? Just share a little bit more of that story, if you would.

Diana Danu (12:18):

I envisioned this organization as a place where parents could come and get advice, get referrals, get a parent's story that is full with lessons learned, people met, exchanges, a place where parents can really maybe take a breath, especially moms. Yes. I guess it mirrors somehow my own feelings and just be able to share their own experience and try to get a bit of compassion and a bit of knowledge and a direction towards where they can go with their own child. I had this experience relatively recently where I met effectively on the street mom that used to have her child in one of the centers that Gabi used to attend. And I started speaking to her and I discussed with her and I told her the things that we were doing. And I told her that along the way, I found a therapist who specialized in therapy for very young children.

(13:15):

She has a one-year-old child with Down syndrome. And I told her that this therapist that we even saw went with Gabi for a session and he loved it and it was wonderful. And the therapist said that she usually works more with very young children, especially for the social skills. So I advised her, her eyes lit up. And that's

(13:35):

One of those moments when you know what you're trying to do is the right thing to do because piece of advice like this can change a whole trajectory in life, especially when you're at the beginning of the road. As you're further along, like you have been with Michael, there have been hurdles, but this road has been long, it's been winding, you know it. But when you're right in the beginning, I think like that could just completely change your trajectory. And that would make this not- for-profit that I'm working on right now worth every effort that we've put into it.

Mike Carr (14:04):

I think that's great. And I think you've been on this journey for eight years. We've been on this journey for 36 years, and I think there's some key takeaways that we've both learned that we can share with other parents. And I'm going to start with one, and then I know you've got several more that you want to add on there. One of the ones that I would start with is, especially now versus 35 years ago when our son was diagnosed, there's a much greater awareness of autism and there is a path forward. And so don't settle. Don't settle for just keeping your kid safe in a classroom, but not motivated, not challenged. Don't settle for a school that's okay, but not great. Don't settle for a therapist that doesn't take the time to really understand what makes your child, whether it's our son Michael or your son, Gabi, or whomever's watching this, understand what makes them joyful and happy and excited.

(14:56):

Because I can almost promise you anywhere in the US at least, there is an alternative that if you're not getting those kinds of boxes checked, don't give up because they're out there and there are more and more of them every day or every week it seems like. But I know you had some other takeaways, Diana. So share, if you would, some of the other takeaways that you feel you would like parents to walk away from this podcast with.

Diana Danu (15:20):

The first one is to slow down before you speed up. Most definitely, because the sense of urgency that every parent has can bring you to a state where it feels as if you're doing something, anything to just move the needle along, but take a breath, get some real knowledge about intervention-based therapies that work, that have results, and take it from there. The second one, and it's very closely intertwined with the third, is that therapy for kids and even for young adults should be fun. They should enjoy themselves. They should not notice the fact that they're actually working, and that's when their skills will transfer to real life. That's my biggest takeaway from all of these years. In a school setting, in a classroom, at a little table where they would do their little programs, they do not transfer. They mean nothing outside of that setup.

(16:07):

Those skills are of no value. My next takeaway would be that coordination with a BCBA is critical. You really, really, really need a professional. And I know in the US they're built into the system and it's absolutely amazing. In this part of the world, we're still developing in that it has been done in the legal domain, in the bureaucratic domain, but there's always room for improvement. But if the parents understand the importance of a BCBA, their road will be a little bit smoother. And this is somehow related to the next big takeaway that the parents are the central part of the therapy, not the therapists, not the centers, not any experts, but the parents. The parents know their child and they are the most interested party in making this work and ensuring that the therapy works on every domain of the little person or even the young adult person's life in every single domain.

(17:01):

It should transfer easily from house to kindergarten to playground to school. That's the transition that must, must happen. And my last one would be the right information at the right time. It seems that the parents who have the information, because there's a lot of it on the internet, just as you were saying, Mike, knowing which pathway to take, or at least knowing someone who has taken a few of the wrong ones and found the right one will give the parents the option of choosing the best solution for their child and hopefully seeing progress along the way.

Mike Carr (17:34):

So if someone watching would like to find more out about your nonprofit, maybe they want to give you some money, right? Maybe they would just like to listen in on the experience, like if you have a newsletter or some kind of a flyer, even though you're in a different country, you're very articulate and all the needs that you're sharing are the same needs that any parent of an eight year old has, whether they're in Romania, the US or elsewhere, where would you guide them

Diana Danu (18:00):

In? My LinkedIn page is probably the best location to find me. Currently, we're working on a website, we're working on a brochure, and we're working on a newsletter with a designer friend. Going back to the subject of connection and community, I was able to pitch this idea to some of my friends, and most of them are willingly helping me to get a website and a newsletter off the ground. So hopefully we'll have that in the future.

Mike Carr (18:22):

How do they find you on LinkedIn? What's the easiest way to go?

Diana Danu (18:24):

Diana Danu.

Mike Carr (18:25):

Diana is D-I-A-N-A, and then last name is D-A-N-U.

Diana Danu (18:29):

D-A-N-U.

Mike Carr (18:30):

Right. And if you say Diana Donu, Bucharest, Romania, I think you're going to show up, right?

Diana Danu (18:36):

I will show up.

Mike Carr (18:37):

You've been delightful and I want to conclude with some summary comments. And then Diana, if you have just one takeaway, if you had to leave parents with just one thing, I'd like you to think about what that might be. But my one takeaway after listening to you and all the great points you've raised is, it's this combination of the parents have to be the center of it, and you have to advocate for your child. You have to be as proactive as you can be, but also you want to try to make it fun. And I would say you need to try to make it fun, not just for your child, but as much as possible for yourselves. And this is not easy, folks. I mean, this is an arduous path. I mean, the battles you're going to have to fight. I don't want to be a Debbie Downer here, but this is not an easy road for most parents, but there are ways to enjoy the journey because it is a journey and you've got to embed enough joy into it so that if there is something that a Gabi or Michael enjoys doing, you make that a family event, or the grandparents are up to speed, and so they understand how to interact with your son or daughter, and you intentionally pick things that everyone's going to enjoy and try to make it as exciting and engaging for your son or daughter in situations where they're probably going to be more likely to get excited, to smile more, to laugh.

(19:56):

Laughter is sort of the key to all this, maintaining a sense of humor, because there are going to be some things you just do and they're just going to be ridiculous. And you're going to say, "I can't believe we've got to do this again," whether it's filling out the form or talking to the school or whatever it is. So maintaining that sense of humor for us at least has been so, so important. But Diane, if there's one takeaway you'd like to leave everybody with or advice, what would that be?

Diana Danu (20:21):

The power of mom and dad.

Mike Carr (20:23):

Yeah.

Diana Danu (20:24):

The power behind the little human who grows, who needs to be happy, who needs to be learning, who needs to be taken places only happens because of mom and dad. Not one of them, but both of them, if possible, and family members and community, it really made a difference for us once we understood that it's not up to the experts. It's up to us as the family to build a circle around him and just keep pushing him and helping him to get to where he can because every single child deserves to get to reach his potential or her potential and mom and dad power is what will get them there.

Mike Carr (20:59):

Fantastic. Well, thank you again for your time this week and

Diana Danu (21:03):

For

Mike Carr (21:03):

The rest of you that are watching this, I think we're going to leave you with one thought. If you get a chance this week with your son or daughter to do just one thing with them that furthers their potential a little bit, right? You know what they're good at, you know what they enjoy, whether it's music, whether it's puzzles, do one thing that maybe pushes them just a little bit so that they have a little bit more skill in that area, a little bit more fun or joy. I think that's going to be a path or a step in the right direction. So thanks again. Have a great week and we'll talk to you again next week with a new episode on Autism Labs.