By Maureen Gilmer, IU Health senior writer, email@example.com
Kairo Buford is a 3-year-old force of nature. He is busy and boisterous, but also sensitive and introspective.
Diagnosed with autism a year ago, his progress since being connected with resources through Riley Children’s Health has been nothing short of remarkable, says his mom, Autumn Grimes.
“We limit them with our own ignorance,” Grimes said as she watched her youngest child engage in therapeutic play with Riley occupational therapist Mary Hart MacLeod.
“I have four other children, but I’m a first-time parent with him. I’m learning step by step with him,” Grimes said.
When she first heard the diagnosis, she cried. She wondered if her son would ever talk or read or do things for himself.
At first, she babied him, she said, but she soon realized that she needed to change her approach. Kairo was going to surprise her.
“I had to change everything I thought I knew about parenting, about autism.”
MacLeod, who has been seeing Kairo since September, is working with him on what she calls “executive functioning skills” to support his daily routines – dressing, mealtime, bath time, etc.
“He is now a pro at routines,” she said. “He keeps his other family members in line.”
He knows when he comes into therapy, for example, that he must take off his shoes and line them up on the wall before he enters the playroom. The adults follow suit.
When he leaves to enter another area, he must stop to put his shoes back on. The act of taking off and putting on his shoes helps mark time and prepares him for a transition, MacLeod said.
Occupational therapy, she explained, is very broad. While therapists work with patients on fine motor skills, gross motor skills and visual motor skills, there’s much more to it.
“We look at daily activities and all the different areas of the human experience that can affect your daily living skills,” she said. “Especially with our autistic clients, a lot of it is finding accommodations and adaptations in their environment and in their world that work for them, while helping family members get on the same page to make sure they feel successful during their day.”
In Kairo’s case, he has a large, supportive family, MacLeod said, and they enjoy having family gatherings.
“We are working to find ways that he feels most comfortable engaging in those activities and also helping mom and grandma recognize what signals he gives when he is ready to go and how to make it a successful experience for everybody,” she said.
Mom and grandma (Patricia Hansford) accompany Kairo to his weekly therapy sessions at the Riley clinic on the Far Eastside. Their participation in his therapy is vital to his continued development, MacLeod said.
“Mom and grandma have been phenomenal advocates for him. They are very involved in our sessions and have done a lot of legwork on their own to learn about how Kairo’s brain works so we can help him instead of trying of trying to change his brain into what ours looks like.”
The old way of thinking when it came to autism was that early intervention could help change the way children’s brains work, thereby making them “less autistic,” she explained.
“We’re really moving away from that now. We’re not trying to change their brains, but we want to help them be more successful. I look at early intervention as a way we can work with parents and caregivers to better understand their child and set them up for success.”
In addition to working on routines and learning sequences, Kairo is moving into classroom-based preparation – doing things like cutting with scissors and following directions. He will start preschool in the fall at a school for children with special needs, where he will continue to receive occupational and speech therapy.
Kairo’s speech has come a long way since last summer, his mom said. He was nonverbal, but now he says several words, sometimes stringing two or three into a sentence.
As if on cue, MacLeod is telling Kairo while working with him on a puzzle: “Remember if something is hard or you need help, you can touch me or say help please.”
He considers that for a moment, then says, “Help me,” which delights his therapist, his mom and grandma.
“We went from no communication to this,” Grimes said, adding that her son has a tablet to help with language, and the family uses a lot of visual clues/pictures around the home and some sign language to help.
But Kairo has plenty to say during his hourlong session as he sorts plastic animals, tosses stuffed frogs into a basket, swings on a large tire (his moment of Zen) and practices his cutting skills.
MacLeod is adept at keeping him on task in a way that doesn’t lead to frustration, but she knows that anxiety and frustration are often just beneath the surface.
That’s why she suggests that Grimes work on putting together a picture book for Kairo to prepare him for the first day of school – including photos of the school, the bus he will ride, his teacher, etc., and going over the routine he can expect on school days.
Grimes and Hansford suspect that Kairo, who will be 4 in June, already recognizes some words in print, so reading isn’t far off. In fact, MacLeod said, kids with autism may even read a little earlier than other kids. As she says this, Kairo giggles as only a child can.
The sound of laughter fills the room. His mom smiles.
“Are there days when Kairo frustrates me and I want to shave my head bald? Of course, but it’s not his fault,” Grimes said. “There are times he’s just angry and I’m like, ‘What happened?’ Well, nothing happened in my eyes, but something did in his world. Now, he tells me in his own way.”
She only has to listen.
“We hinder our children from the progress they can make sometimes.”
Photos by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org