Small Steps Leading to Big Changes: How One Family’s Journey with RUBI Transformed Their Son’s Independence and Confidence Article | November 26, 2024 So often in life, it’s the little things that make the biggest impact. That’s certainly the case for the Sarias and many other families parenting children with autism. It’s accomplishing the small daily tasks that build confidence, create greater independence, forge stronger bonds, connect people and, all together, lead to more happiness for everyone. Micah completes a puzzle by himself – a task that, prior to RUBI, would have caused him frustration. Twelve-year-old Micah recently started microwaving his own breakfast. He’s been entrusted to hold his own glass as a parent pours him drinks and often takes care of his own refills. He’s been working on bathing himself and practicing reading and spelling. Not long ago, he declared he was “too big” for a cartoon he used to watch and specifically seeks out toys in department stores that read “meant for children 8 and up” on the box. He’s less afraid of the parakeet that perches on his neighbor’s shoulder as she walks the halls of their building. He’s lobbying for his own phone and, when using an old, unconnected, iPhone, gets peeved like every other person in 2024 when he doesn’t receive a reply to his text messages. When Catalight’s Director of Clinical Excellence Ian Cook started working directly with Princess and Ping Saria, he perceived that their son’s anxiety was interfering with his functioning and ability to engage in certain activities and environments. As often is the case with autistic children, Micah needed support with adaptive skills and daily living tasks. Being that Micah was very attached to his parents for his age, fostering greater autonomy quickly became an outcome goal. “He still holds my hand when we’re walking out in public given his anxieties. But I definitely see that he doesn’t think of himself as a little boy anymore,” said Ping. “He’s definitely progressing and learning how to recognize his own capabilities. He’s recognizing in himself that, ‘now I’m old enough to do this, I want to try it.’ A lot of those things are stuff that he got frustrated with when he was younger, so that’s why we didn’t really do them. So, I think the movement toward independence has been great.” What is RUBI? Ping and Princess graduated from Catalight’s newest treatment modality, RUBI (Research Units in Behavioral Intervention), earlier this year. RUBI is designed to empower families by bolstering parenting and behavioral psychology tools, thereby significantly reducing challenging behaviors and improving adaptive skills. Essentially, it teaches parents how to better parent a child with autism or other behavioral concerns. “We thought RUBI would better fit our life dynamic,” said Princess who, as a stay-at-home mom, spends the most time with Micah. “I think for me, as a parent, I wanted to be a little bit more educated and be more hands-on with the training. I think it’s equipping us to be better parents and better caregivers and meet the needs of our family. My takeaway is, ‘how do I become a better caregiver, an advocate, and how do I gain more parenting skills?” The Sarias, who live just outside San Francisco, videochatted with Dr. Cook once a week or every other week for 90 minutes over the course of about three months. “I think it worked,” Princess said. “We would go through videos and talk about different scenarios. We developed a behavioral plan with Ian, but we also focused on some of the behaviors that we wanted to target.” Added Ping: “He would give us steps to teach Micah a skill. Then he’d break down how to introduce a skill, how to get that skill integrated into his daily routine. So, we’d give it a try. After a few weeks, we would report back. Then, we would adjust depending on how our attempts went. Ian really would take his time to ask us, like, ‘how is Micah at putting on his own clothes?’ And we would explore that really deeply. Based on what we shared, Ian would tell us, ‘OK, it sounds like this part is working but sounds like you guys need help with doing this other part.’ And so that’s what we would tackle. It felt like it was definitely catered to the specific needs of our kid.” RUBI Compared to Paraprofessional-led ABA The Sarias chose RUBI after spending years going without behavioral therapy due to what they called a bad experience with high-hour paraprofessional-led Applied Behavioral Analysis (ABA) and a revolving door of practitioners. It was clear, Cook said, that Micah was largely capable of doing things somewhat independently and functioning within a general education classroom with the right level of support. Intensive, in-home ABA was not needed, in his case. The Saria family (left to right: Ping, Jacob, Princess and Micah) dressed up as lost world explorers for trick or treat this Halloween. “I just heard that, with the treatments, they said, ‘ABA, it’s really for the parent.’ I was like, ‘OK, if that’s true then why do you have a therapist that’s executing everything and I’m just relying on them?’ It’s hard. It really depends on the life dynamic,” Princess said. “Parents may not have the energy, they may not be aware, they may not want to step up to do the training, but for us, we chose to be fully engaged. Ultimately, at the end of the day, we’re the parents and we have to be the ones to guide Micah and execute these things.” “Those experiences are what turned us off to the traditional ABA because we weren’t part of the process,” added Ping. “When the therapist was gone, the situation would go back to the way it was without the therapy.” Some parents find paraprofessional-led ABA burdensome because of the high hours that can take away from normal family dynamics. RUBI is meant to be flexible, convenient and a natural fit into family’s lives. Since parents are with their children the most, the program makes them their child’s primary teacher by training them in ABA techniques. That allows for ABA training to happen around the clock – from bringing a child to school to mealtimes to 2 a.m. when a child can’t sleep – while empowering parents with greater independence and know-how. “I thought that going through RUBI was better because it didn’t disrupt our day-to-day life,” Ping said. “When we had ABA before, it was a big chunk of our week where we’re hosting somebody and it wasn’t normal. Micah and his big brother weren’t acting normal; we weren’t acting normal. It always felt like it was a one-off and it didn’t really translate to normal life. It was more of a disruption really than anything else.” The Sarias are quick to point out that they’re not against high-hour ABA. For them, it comes down to personal choice. Since Princess is a stay-at-home mom and Ping works a hybrid job, Micah had become very accustomed to being looked after exclusively by his parents. “Princess and Ping were just really great – very open with what was challenging and also open about their family and what works well for them,” Dr. Cook said. “They were very supportive of each other and also on the same page. They were really committed to doing the work and, at the same time, like all families, very busy. With RUBI, practice is critical. It’s important that practice happens but also that we have a good dialogue about what works and what’s not going to work. It doesn’t help to give parents a bunch of homework if it’s going to be difficult and stressful and it’s not going to help the family. So, you’re teaching skills specific to the family’s priorities at that moment, but also hoping that they’re learning some strategies that can be generalized as new things come up.” RUBI in Practice There’s a collage of printed photos for Micah on how to leave the house in the mornings pinned to a wall in the Sarias’ home but he doesn’t need it anymore. Quickly committed to memory, it served as a “how to” and a guide on what to expect. During their RUBI training, Dr. Cook focused heavily on planning, question asking and step-by-step processes. On his way out the door and down to the family van, a routine was created: Micah will ask, “where is the parakeet?” or “will there be any dogs?” as a way to mentally and emotionally prepare. Since his parents graduated RUBI, Micah has started creating his own schedule, to-do lists and even came up with a bucket list of activities he wanted to accomplish over summer break. “Princess and Ping are the true experts on their kids’ strengths and needs and their family’s priorities,” Dr. Cook said. “In RUBI, we start there and then problem-solve together to address a given challenge. Outcomes are twofold: child behavior change and skill acquisition. Caregivers gain confidence that they can parent their way through the next challenge and take on the small steps and bumps along the road to their child’s goals.” Another method that’s worked very well for Micah is the concept of “chaining” – breaking down tasks into steps and then having Micah do different parts of it without help. Making a peanut butter and jelly sandwich with dad, for instance, became a 10-step process beginning with getting out the bread, knife and plate and ending with putting the two halves together. After breaking it down for Micah, Ping would do steps 1 to 7 before having Micah help with steps 8, 9 and 10. When Micah got good at his steps, he’d do more until, eventually, he was making the whole sandwich by himself. Perhaps more important than crafting the perfect PB&J was the way chaining developed communication and connection between Micah, Ping, Princess and his 16-year-old brother Jacob as well as others outside the family. “He would say ‘OK, now it’s my turn to get some jam and put it on top.’ He would communicate his understanding of the process until I was able to confidently give it to him. I think that helps a lot,” Ping said, reliving the satisfying sandwich-making experiences. “I think I really benefited from that as a parent with RUBI because now the communication process, in teaching a skill, it’s almost part of our rapport now between me and Micah.” RUBI for the Whole Family RUBI was designed for that very purpose – enhancing communication skills and understanding between all family members and caregivers. Ping and Princess call their neurotypical oldest son, 16-year-old Jacob, an autism brother and co-parent. Though they’re vastly different in many ways – Jacob is quiet, enjoys reading and spending time relaxing while Micah is into sports, “talking to everyone” and “touching everything” – the two enjoy a very typical sibling relationship. They play video games and watch movies together. Often, they’re sporting the same haircut. In many regards, Jacob is very much a role model for Micah or, to put it in more brotherly speak, Micah likes to copy Jacob. It’s likely that Micah developed his love of Legos and puzzles from shadowing his brother. Micah asked for his own Legos for his birthday in May, to which Princess naturally replied, “are you sure?” since such tasks would commonly cause frustration that would escalate into tantrums in the past. Micah responded, “make sure it has instructions.” A motorsports lover, Micah was gifted a racecar Lego set. Princess watched the build proudly, capturing a video as he completed it. From there, he moved on to a 150-piece jigsaw puzzle of a Jeep. There were a few frustrations here and there when Micah tried to do it too quickly at points, but Ping and Princess were able to talk him through the steps. Micah is “leaps and bounds” ahead of where he was pre-RUBI, Ping said, where he was prone to scatter pieces in anger and quit as early as the second piece.From there, he moved on to a 150-piece jigsaw puzzle of a Jeep. There were a few frustrations here and there when Micah tried to do it too quickly at points, but Ping and Princess were able to talk him through the steps. Micah is “leaps and bounds” ahead of where he was pre-RUBI, Ping said, where he was prone to scatter pieces in anger and quit as early as the second piece.Princess and Ping added that Micah’s confidence and “threshold for failing” is now much higher. That’s an important lesson for any child – or, really, any person – to encounter. Princess and Ping went through that themselves in meeting with Dr. Cook over the months they were in training and after. RUBI gave them numerous tools, but it was up to them to determine what worked best for Micah and the family through trial and error. “What we come up with is not always 100% right,” Ping said. “Now we have the mindset that there’s a specific outcome or goal we’d like to see. Since we have a destination that we want to reach, we definitely adjust, call an audible and change to suit Micah’s needs or the situation. Hopefully, that’s something that he incorporates internally too – where he’ll understand he has life goals and he can adjust his own routine to meet what he wants. That’s what I’m hoping will develop over time for all the different things he wants for himself independently.” Generalized Strategies that Lead to Enhanced Outcomes That did come to fruition in a bittersweet moment when Micah told Princess – who would always chaperon Micah’s class on field trips – that he didn’t need her to go on his most recent excursion to the Exploratorium in the city. The Sarias saw Micah mentally preparing himself for the new experience. They recall him saying: “Mom, you don’t need to be part of this field trip. I got it. I’ve got my headphones. I can go and you can come get me at the bus.” “Hearing from the parent how things are going well and where progress has been made is really rewarding. And the flip side of that, too, is I think Micah, during the time I was working with his parents, also went through some growth and showed positive progress in that sense,” Cook said. “I think he was showing an ability to generalize some of the things that we’re learning at home to use at school.” There were plenty of nerves on both sides, but Micah went without mom and everything turned out well – exactly what the Sarias wanted. “To me, there’s a short-term commitment to RUBI that produces long-term results. It’s like teaching a man to fish. RUBI is something that can give you skills to teach your kid and it’s not disruptive. It’s a short commitment that can adapt to your family’s needs,” Ping said. “Your insecurity as a parent is asking, ‘am I doing the right thing? Am I just guessing at parenting?’ RUBI gives you the confidence to say, ‘this is how it can be.’ So, if there’s a mom or dad out there that’s just like, ‘I don’t know if I can do it,’ this will improve your parenting relationship. You will definitely walk out with more confidence and rapport with your kid where you do small things that carry on for a long, long time in their life.” It’s the small things in life that tend to make the biggest differences. For the right person, less can be more, good things can come in tiny packages and brief moments in time can have everlasting effects on so many.
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