The first time I met Ms. Ku’u was December 6, 2000. I knew she was special. She was known as Princess. She was not yet six weeks old and had been placed into the custody of CPS. I had just been licensed as a foster mom for special needs kids when I got the call to go over to Oahu and pick her up. From the first moment I saw her, I knew we were meant to be together. She weighed barely 5 pounds and hardly had the strength to suck the formula from her bottle. The geneticist was the first of her doctors that I met. He explained to me that she had a rare chromosome defect, a shortening of the long arm of 2q37 (say what?). There were only ten reported cases. There was so little known about the deficiency that the most any one could hope for Princess was for her to lay on her back and be totally dependent on others for her every need. I looked at him and told him he was wrong. There was too much spirit in her eyes for that to be the case. He told me not to be too hopeful. I remembered the saying that the Good Lord only gives us as much as we can handle.
I spent four days and three nights at Kapiolani Children’s Hospital with Princess. The medical staff needed to be sure I had all the information and skills needed to take care of her. CPR and BLS training had to be updated. We went over how to take care of her apnea monitor. Perhaps the biggest worry was would I hear her when she woke in the night. Her cry was like the tiniest of kittens – so quiet, so soft – but I heard it because we were already bonded. On the fourth day we flew HOME!
That was over eight years ago; on January 30, 2002 Ku’u became an official Whalen through adoption.
The first months are now pretty much a blur. There were home health nurses and caseworkers and this worker and that worker – and countless hours of just watching Princess – who I now called Ku’u – grow. I carried her in a sling most of the day – next to my heart – so I could monitor her breathing. If she wasn’t in the sling she was attached to an apnea monitor. She was started in therapies early through the Early Intervention Program; physical therapy, speech therapy and occupational therapy. We were taught exercises to help her get strong (part of 2q37 is poor muscle and sensory development) and given constant support. Ku’u was starting to babble at around 18 months but then stopped for almost a year because she was concentrating on learning to walk.
When she got the walking down – she started concentrating on talking. Her first word was “butterfly”. Ku’u was six years old when she said “I love you mommy” for the first time.
As soon as she made 3 years she graduated from the Early Intervention Program and was started in Special Ed Preschool at Konawaena School. Under the tutelage, love and structured teaching of Aunty Jan Ikeda and Aunty Ti (Precita Recaido) Ku’u flourished. Speech has been one of her bigger obstacles – but she is now talking at about the level of a four year old. She is able to count to 100 plus and say her ABC’s. She loves to read, and participates in SFA and the AR Program at school. She is catching on to adding and subtracting. She has such an inquisitive mind and such a loving spirit. Her smile lights up any room and makes the worst time the best time.
Thanks to the physical therapy and occupational therapy she received she is able to run and climb stairs and get her clothes off and on by her “own self”. She is able to cut out the beautiful butterflies she colors and hang them all over. She loves to do puzzles and bead. She has chores that she does around the house and has become fairly self sufficient.
Ku’u has had some of the most AMAZING teachers and therapists along the way. Ku’u is living proof that it takes a village to raise a child. I know she will succeed, because she has the heart and the spirit to do so – anyone that has ever seen her smile or gotten a nosy-nose from her can attest to that – but she is succeeding so much faster with the resources that have been made available to her.
Shogo
Shogo is 7 years old and a happy little guy. He lives with his Mom, Dad and twin brother on a farm at the end of a rough 4-wheel drive road in South Kona. Shogo loves animals and is good at guessing how many eggs the chickens will lay everyday. He also loves the water, from the ocean to pools to bathtubs, and can even hold his breath underwater.
Shogo really “lights up” at the mention of horse therapy and holds his head up better when he is on a big horse.
Shogo likes people and especially other kids the most and is very happy just hangin out at talk story time.
Shogo at Horse Play
Shogo's Mom
Ramzy
Ramzy’s story begins in 2003. She was born to Vince and Lore and big sister Jordan. I had a normal pregnancy nothing to be concerned about. Except for monitoring the last 2 weeks because Ramzy wasn’t moving around as much as her OB wanted. At birth we realized something wasn’t normal and after 2 days at Kona Hospital under the excellent care of Dr. Peter Locatelli she was transferred to Kapiolani Children’s Hospital on Oahu.
Ramzy was born with Hypotonia which means low muscle tone, and is normally an underlying cause. Ramzy could not lift any of her limbs, not even her head. But she could turn her head side to side. She had to be fed through a tube because she could not suck. She was just like a doll, only she was my child. She remained at Kapiolani Children’s Hospital for one month and they ran a battery of tests to find out “WHY” so that we could know how to help her. After arriving home we were assisted with the State of Hawaii’s 0-3 Program with therapists and nurses visiting 2-3 times a week until she got stronger. One therapist that has been with Ramzy from day one is Barbara Stahley a Physical Therapist who saw Ramzy from not being able to move to slowly walking with a walker. It has been a lot of hard work, prayers and dedication to be where we/she is at.
Ramzy now rides a horse weekly with Therapeutic Horsemanship of Hawaii and this program has helped her with her balance and muscle tone tremendously. Nancy who runs the program is also Ramzy’s Physical Therapist and has been with Ramzy for the last 2 years.
We still do not know “WHY”. Though Ramzy is doing more than what the NICU doctors expected her to do, she is walking. She appears to understand when we talk to her. She does not speak “YET” but we have faith she will. She can see, hear and express herself and we are blessed. She is so good natured.
God brings miracles into peoples lives and Ramzy is one of our miracles.
Marinna
Aloha Angelina & Randy.
Since I became aware that my daughter Marinna was autistic, music became our way of communication in many moments of our daily life.
Marinna touched the beautiful instrument called the “Harp” for the very first time at Bonny’s studio. I remember seeing her imitating playing the harp while watching a classical concert on TV. Marinna has always been fascinated by music and singing. As little as she speaks and understands our spoken language, she spends many hours watching opera and orchestras playing wonderful classical music as if she can see the notes and understand the meaning and emotion of all the sounds.
When I started her intervention at the age of 3, I was very frustrated by not finding clear guidelines to fix this mysterious disorder known as Autism. I then realized that my goal for this journey is how I can support Marinna to feel happy. How I can keep her eyes shining; music was the answer to it all.
As she goes deep into her teenage stage of life, the feeling of happiness is sometimes a challenge. By being able to be around real musical sound, being able to hit keys and pluck those strings are such a joy and stress relief for Marinna. At home, we giggle together trying to read music, coordinate hands and the musical rhythm. We sometime become creative together in order to communicate in music. To me, when she plays each note, she releases part of her thoughts and emotions. She often stops others playing along with her as if she is composing her own music. Music really does cleanse and charge her heart and mind. Our time playing music together are cherished special moments that will never be forgotten.
