OUR STORY
On a perfect California night in 2008, we joined together in prayer, holding hands each step of the way, as we eagerly awaited the arrival of our first born child. 36 hours later, on April 21st, at 8:33 p.m., a beautiful and healthy baby boy took his first breath in the universe. He would be named after his father, Ka’ēo Daniel Griffin, Jr. In Hawaiian, Ka’ēo means The Victorious One. Our little champ was a dream come true!
Ka’ēo Jr. brought so much happiness into our lives with his infectious smile and innocent bright brown eyes. As he grew from a new born infant into a baby, Daddy noticed something different about his little Ka’ēo Jr. He never really craved attention and physical affection in the way other babies his age seemed to. He never really responded to his name and Daddy really had to work for his eye contact as a baby.
At his 18 month old, wellness visit, our pediatrician asked us to answer some routine questions as a part of his check-up:
The woman who first evaluated him said she did see “areas of concern” with Ka’ēo, Jr. in many levels of typical development and also in his cognitive development. She recommended another assessment, which lead to a series of evaluations over a 2 month span. Expert after expert reported notable delays and “areas of concern”. Everyone was telling us there was definitely something to be concerned about and how critical it would be to start working with him immediately, at this early age, but no one was telling us how to start helping him!
We were finally referred to a child clinical psychologist. Unsure of where our meeting with her was going, we watched as she carefully observed Ka’ēo Jr., blowing bubbles for him, stacking blocks in front of him, showing him a toy and hiding it so he could try to find it… She then asked us a long series of questions about his behavior, his little “quirks” that we always adored – the way he’d run back and forth across the room, the way he would hum and sing as he ran around the house, the way he would turn his cars over and spin the wheels, the way he would pick up sand and let it fall through his finger tips in front of his eyes, the way he would fondle Mommy’s hair… He would do these things for as long as we would let him, perfectly content; almost meditative, like a monk in a monastery high above the city – closer to God and peace than any of us could ever hope to be.
After a deep breath, she looked at us with sorrowful eyes of compassion and told us our little boy may possibly have a spectrum disorder. She went on to further explain that so many of his little “isms” we loved so much, that made him him, were actually indications of infantile autism. Impossible! We were floored. It took everything in us not to cry. We kept telling ourselves there must be some mistake. In the back of his mind, Ka’ēo Sr. felt he knew something was always different about his first born son, his pride and joy.
As lumps grew in the backs of our throats, the psychologist explained to us that because he was only 21 months old, she could not give us an official diagnoses. She did however refer us for early intervention therapy as soon as possible. Daddy had to leave for work, so Mommy drove our babies home, alone.
As she drove, thoughts of his upbringing flashed in Jackie's mind. In her memories, she saw him laughing and playing, running back and forth, and she could feel her love for him overflowing at each moment of his life. She tried to further process this diagnoses as glimpses of his “new future” hit her like lightning bolts, questions about how this could have happened and what we could do next screamed at her from every direction. It was too much to handle, tears flowed from her eyes as she searched her heart and soul for comfort.
In the following days, we were directed to the San Diego Regional Center who then brought us to HOPE, a clinic treating autistic children under the age of 3. HOPE exposed us to the two therapeutic applications most widely used by the autism community: ABA (Applied Behavior Analysis) and Floortime.
After another month of additional assessments, Ka’ēo began receiving services from HOPE. He was given 4 days of ABA therapy and 1 day of Floortime each week. We observed as his ABA therapist conducted repetitious drills with Ka’ēo as a way to teach him basic skills he had not learned on his own. They seated him in a special chair and table, designed to lock him in place so getting up from the table to run away from the therapist and task at hand was nearly impossible.
A mesmerizing toy was placed in front of Ka’ēo and his eyes lit up with excitement. He played with the toy with great curiosity; then the ABA therapist decided he’d had enough fun and took the great toy away and placed a challenge in front of him such as a certain puzzle or two cups, “Okay Ka’ēo, put the cup in the cup.” Ka’ēo would pick up the cup and twirl it with his fingers. She took the cups away and placed them in front of him, “Okay Ka’ēo, cup in cup.” He would spin one of the cups, and she took them away and placed them on the table again, “Put in, cup in cup.” His eyes wondered around the room and he started to fidget in his seat. He squealed in protest. She responded by not responding; she immediately took the cups off the table and looked down at the floor. When he gave up his fight, she became alive again, “nice quiet Ka’ēo! Okay, cup in cup…” and so it went… When Ka’ēo finally did what she asked in the way she approved, he would get a reward such as a fun toy or treat like an M&M or Cheerio. This process is known as "Discrete Trial" and is a key technique used by ABA therapists.
We were told Ka’ēo’s repetitious behaviors, otherwise known as isms or stims were inappropriate, and it would be best to use a technique called “Playful Obstruction” to stop or redirect him when we saw him behaving in these ways.
For example, if he was running back and forth, we were to block his path and tickle him; press his heels down when he walked on his toes; put his hands down to his sides and tell him “quite hands” when he covered his ears. Playful Obstruction is a key technique used by Floortime therapists.
We diligently used these techniques with Ka'ēo Jr. but none of these behaviors stopped. Over time, we found ourselves watching him as he stimmed, full of fear and worry, knowing these behaviors made him autistic.
Shortly after Ka’ēo Jr.’s 2nd birthday, Daddy received an offer from his company to transfer to Hawaii. We always thought we would move back someday and the opportunity seemed to arrive at the perfect time. Since Ka’ēo Sr. would be able to provide for us more financially out there, Mommy would be able to stay at home full time with the boys.
Growing up in Hawaii was a unique experience for Ka’ēo Sr. He still carried a sense of pride for growing up there, and many aspects of his upbringing were enriched with Hawaiian and Asian culture. Hawaii was a small town environment where everyone was "Aunty" and "Uncle," free from racial intolerance. We decided this would be the best place to raise our children and having Mommy at home full-time in these early years would be a critical factor in Ka'ēo Jr's recovery.
MORE TO COME...
Ka’ēo Jr. brought so much happiness into our lives with his infectious smile and innocent bright brown eyes. As he grew from a new born infant into a baby, Daddy noticed something different about his little Ka’ēo Jr. He never really craved attention and physical affection in the way other babies his age seemed to. He never really responded to his name and Daddy really had to work for his eye contact as a baby.
At his 18 month old, wellness visit, our pediatrician asked us to answer some routine questions as a part of his check-up:
- Does he respond to his name?
- Does he point at things he wants?
- Does he say 10 words or more?
- Does he respond to simple directions?
- Does he take his shirt or pants off alone?
- Does he feed himself with a spoon?
The woman who first evaluated him said she did see “areas of concern” with Ka’ēo, Jr. in many levels of typical development and also in his cognitive development. She recommended another assessment, which lead to a series of evaluations over a 2 month span. Expert after expert reported notable delays and “areas of concern”. Everyone was telling us there was definitely something to be concerned about and how critical it would be to start working with him immediately, at this early age, but no one was telling us how to start helping him!
We were finally referred to a child clinical psychologist. Unsure of where our meeting with her was going, we watched as she carefully observed Ka’ēo Jr., blowing bubbles for him, stacking blocks in front of him, showing him a toy and hiding it so he could try to find it… She then asked us a long series of questions about his behavior, his little “quirks” that we always adored – the way he’d run back and forth across the room, the way he would hum and sing as he ran around the house, the way he would turn his cars over and spin the wheels, the way he would pick up sand and let it fall through his finger tips in front of his eyes, the way he would fondle Mommy’s hair… He would do these things for as long as we would let him, perfectly content; almost meditative, like a monk in a monastery high above the city – closer to God and peace than any of us could ever hope to be.
After a deep breath, she looked at us with sorrowful eyes of compassion and told us our little boy may possibly have a spectrum disorder. She went on to further explain that so many of his little “isms” we loved so much, that made him him, were actually indications of infantile autism. Impossible! We were floored. It took everything in us not to cry. We kept telling ourselves there must be some mistake. In the back of his mind, Ka’ēo Sr. felt he knew something was always different about his first born son, his pride and joy.
As lumps grew in the backs of our throats, the psychologist explained to us that because he was only 21 months old, she could not give us an official diagnoses. She did however refer us for early intervention therapy as soon as possible. Daddy had to leave for work, so Mommy drove our babies home, alone.
As she drove, thoughts of his upbringing flashed in Jackie's mind. In her memories, she saw him laughing and playing, running back and forth, and she could feel her love for him overflowing at each moment of his life. She tried to further process this diagnoses as glimpses of his “new future” hit her like lightning bolts, questions about how this could have happened and what we could do next screamed at her from every direction. It was too much to handle, tears flowed from her eyes as she searched her heart and soul for comfort.
In the following days, we were directed to the San Diego Regional Center who then brought us to HOPE, a clinic treating autistic children under the age of 3. HOPE exposed us to the two therapeutic applications most widely used by the autism community: ABA (Applied Behavior Analysis) and Floortime.
After another month of additional assessments, Ka’ēo began receiving services from HOPE. He was given 4 days of ABA therapy and 1 day of Floortime each week. We observed as his ABA therapist conducted repetitious drills with Ka’ēo as a way to teach him basic skills he had not learned on his own. They seated him in a special chair and table, designed to lock him in place so getting up from the table to run away from the therapist and task at hand was nearly impossible.
A mesmerizing toy was placed in front of Ka’ēo and his eyes lit up with excitement. He played with the toy with great curiosity; then the ABA therapist decided he’d had enough fun and took the great toy away and placed a challenge in front of him such as a certain puzzle or two cups, “Okay Ka’ēo, put the cup in the cup.” Ka’ēo would pick up the cup and twirl it with his fingers. She took the cups away and placed them in front of him, “Okay Ka’ēo, cup in cup.” He would spin one of the cups, and she took them away and placed them on the table again, “Put in, cup in cup.” His eyes wondered around the room and he started to fidget in his seat. He squealed in protest. She responded by not responding; she immediately took the cups off the table and looked down at the floor. When he gave up his fight, she became alive again, “nice quiet Ka’ēo! Okay, cup in cup…” and so it went… When Ka’ēo finally did what she asked in the way she approved, he would get a reward such as a fun toy or treat like an M&M or Cheerio. This process is known as "Discrete Trial" and is a key technique used by ABA therapists.
We were told Ka’ēo’s repetitious behaviors, otherwise known as isms or stims were inappropriate, and it would be best to use a technique called “Playful Obstruction” to stop or redirect him when we saw him behaving in these ways.
For example, if he was running back and forth, we were to block his path and tickle him; press his heels down when he walked on his toes; put his hands down to his sides and tell him “quite hands” when he covered his ears. Playful Obstruction is a key technique used by Floortime therapists.
We diligently used these techniques with Ka'ēo Jr. but none of these behaviors stopped. Over time, we found ourselves watching him as he stimmed, full of fear and worry, knowing these behaviors made him autistic.
Shortly after Ka’ēo Jr.’s 2nd birthday, Daddy received an offer from his company to transfer to Hawaii. We always thought we would move back someday and the opportunity seemed to arrive at the perfect time. Since Ka’ēo Sr. would be able to provide for us more financially out there, Mommy would be able to stay at home full time with the boys.
Growing up in Hawaii was a unique experience for Ka’ēo Sr. He still carried a sense of pride for growing up there, and many aspects of his upbringing were enriched with Hawaiian and Asian culture. Hawaii was a small town environment where everyone was "Aunty" and "Uncle," free from racial intolerance. We decided this would be the best place to raise our children and having Mommy at home full-time in these early years would be a critical factor in Ka'ēo Jr's recovery.
MORE TO COME...
"Come to Me" (by Jackie M. Griffin)
