“We called him ‘Smiley’ as a baby,” recalls Rose of her son, Tiago. “He had the chubbiest cheeks and was always so happy.” Today, at five years old, Tiago is still smiling, and it’s contagious. Everyone who crosses his path adores him. “He’s so kind,” says Rose, “and being Brazilian, hugs and kisses and showing affection is what we’re all about.”
But at two-years-old, Tiago was a different child. He was withdrawn, often crying, aggressive toward others, and even harmful to himself. Rose noticed sadness and deep frustration in her child. “He just wanted to be held, or tucked underneath furniture,” she remembers. “Sometimes we had to hold him all day.” Rose knew there was something more going on with Tiago but wasn’t sure where to turn.
At a time when children typically develop language, saying things like ”Mama” and “Dada” over and over, Tiago was not verbalizing. “I remember he would say ‘gato’ (‘cat’ in Portuguese), and I would be so excited, but then he would never say it again,” recalls Rose.
When his language didn’t progress, Rose and her husband, Brett, enrolled Tiago in speech therapy through their local school district. They were given a referral to St. David’s Center to have a more thorough evaluation, at which Tiago was diagnosed with autism, and later, childhood apraxia of speech—a disorder in which a child has difficulty planning and sequencing movements accurately when speaking.
Tiago’s body and brain were clearly out of sync. His occupational therapist, Amber, explained that he was under-responding to movement input, or what is referred to as proprioceptive, or body, awareness. When he was feeling frustrated, he would have to go to such an extreme to process it. When the average person feels frustrated, they can clench their fists or get upset and then eventually relax. It took Tiago significantly more sensory input to feel anything. He would get so upset that he was not able to come back down from it for hours.
While it’s typical for preschoolers to have tantrums, Tiago’s meltdowns were so intense they resulted in complete exhaustion until he fell asleep. “At one point, I had to call my husband, because I couldn’t handle Tiago. He was throwing toys and biting me. My mother-in-law had to take his sister Isabella out of the room,” remembers Rose. “He would be so quiet and shy afterward, and down the rest of the day. I think he was just so confused by his own actions.”
Teachers at Tiago’s preschool also struggled as he became more aggressive. Rose and Brett would constantly receive calls to pick him up from school, and babysitters even quit due to his behavior. They couldn’t go anywhere because they were always worried about how he would act or whether they would get a phone call. His older sister, Isabella, would even remark “Why isn’t my brother nice like other boys?”
At the age of three, Tiago started in the Autism Day Treatment (ADT) program at St. David’s Center, which included mental health services, speech, and occupational therapy twice a week. This comprehensive care allowed his team of therapists to see Tiago’s needs from multiple developmental angles and respond in a united and holistic way.
“When your child receives a diagnosis, everyone tells you to go all different places and you feel pulled in different directions,” explains Rose. At one point, Tiago had ten therapists and doctors. At St. David’s Center, Tiago had a coordinated team caring for him, getting to know the little things he liked and truly uncovering his potential. “We saw changes immediately after he started in the Autism Day Treatment program. He was just happier, and we only saw progress from then.”
During his time in the ADT program, Tiago worked with his mental health team to learn strategies to better understand, identify and manage his emotions so that he not only was able to identify how he was feeling, but to request the support he needed to help regulate his emotions. “Giving Tiago the tools to support his emotions gave him the ability to fully experience and interact with the world around him,” shares Alex, a practitioner on Tiago’s mental health team.
Additionally, after his occupational therapists learned how to help Tiago regulate—sort of wake up his body through a lot of intense gross motor play involving big movements, pushing and pulling, and rough and tumble play—he was able to be more present and interact with others without getting frustrated so fast. Amber and her team taught these skills to Tiago’s parents, and they implemented these techniques at home. While he would still get frustrated sometimes, he was more likely to recover in 15 minutes rather than 45 minutes, or even several hours like it took before.
“Every day there were fewer meltdowns,” describes Rose with relief. “We were always waiting for the next one. We would realize it’s been two days, it’s been a week, it’s been a month! Now, I can’t remember the last meltdown.”
After receiving what he needed in mental health and occupational therapy, Tiago’s speech therapy sessions began to change dramatically. “His body needed to figure out how to regulate before we could even begin to work on speech and the apraxia. Once he emerged from OT, his language just burst,” recalls his speech therapist, Kait. “When I met Tiago, he was completely nonverbal. He had a ton of ideas and was unable to communicate them. More than most kids I’ve met, his frustration and sadness around that was so big. I was heartbroken for him.”
Finally, from beneath the frustration and the inability to communicate, emerged an empathetic, witty, and loving little person who wanted to engage and play with others. “It’s just so incredible to see all of the skills surface that he had inside of him this whole time. He just needed help to be able to access them,” says Amber. “We supported him, but he and his family put in the work. I can’t imagine how exhausted he was every day with what he was working through and what we were trying to encourage him to do.”
Now, his therapists are at a point where they are strictly working on helping Tiago articulate his words and communicate with his family, peers, and kindergarten teachers. “I used to say, ‘I love you and night-night,’ and he wouldn’t respond,” his mother Rose recollects, “Now he asks me to lay down beside him and will say, ‘You stay me…nice.’”
Tiago graduated from occupational therapy (OT), and now he is in a mainstream classroom in kindergarten and receives speech therapy twice a week to work on articulation and intelligibility of his words. His sister Isabella is his biggest advocate and when introducing Tiago to others will say, “This is my brother Tiago! He’s on the spectrum and we are helping him learn how to talk. “Most importantly, Tiago can speak, he can advocate for himself, and he can tell others about his ideas. He is no longer frustrated. “He continues to make more progress. Every day there is something new he will tell me,” says Rose. “He was talking about the deep sea the other day! And he asked for a shark–themed bedroom.”
Rose and Brett have high hopes that Tiago will thrive and, if he he’s still interested one day, perhaps even pursue marine biology. “Life just got so much better once he got the help he really needed—for him and for everyone. I’ve learned that you have to trust in people—even little kids. They have a lot more strength than we think.”