Carlos absolutely loved to ride the tricycle—but it was only available to him at school. It was an old Rifton model, but it worked for him because his trunk was supported and pedaling was easy. The current Rifton adaptive tricycle has superior options for support and guidance including a butterfly harness, trunk laterals, head rest, rear-steering bar, and stationary adapter.
Carlos’ family and friends wanted to get a tricycle for him to use at home, and so they came to visit us at Rifton. In our facility, Carlos was eager to try out the new bike. He chose a red tricycle and used a butterfly harness along with trunk laterals for support of his torso. His parents were thrilled with the rear-steer option which gave them some control over Carlos’ whims. It was marvelous to see him riding the special needs trike around our facility—visibly glowing. And best of all, he can now practice at home.
The Story of Carlos Guillermo Chaluisan
Behind this happy child is an amazing story which his mother Alicia shares: Carlos Guillermo Chaluisan was born on June 3, 2002. He was born to Alicia & Carlos Chaluisan who wanted so much to have a baby and make a family. After many miscarriages, God finally blessed us. Early on in my pregnancy we were told that Carlos had hydrocephalus or excess fluid around his brain. We were warned that “your baby will be mentally retarded” and were given the option to end the pregnancy. I was devastated… but I put it in God’s hands and had my baby boy. It was the most beautiful moment in my life.
On June 26, 2002 Carlos had brain surgery. He needed a shunt in his head to drain the fluid from his brain. When Carlos came out of surgery I was told that he would be attached to a respirator for a couple of days, but little Carlos had other plans. Four hours after surgery he wanted that thing off and wanted to eat. The doctors said he was a true fighter. This is when I knew he was our gift!
Today Carlos is a happy eight year old boy, even though he has multiple disabilities. These disabilities include congenital hydrocephalus, macrocephaly, Arnold -Chiari malformation with tethered spinal cord, choanal stenosis, right lower extremity hypotrophy with congenital club foot, congenital hearing loss, cerebral palsy and a form of spinal bifida and scoliosis. Basically, everything on the right side of Carlos’s body is smaller than the left. Carlos has been receiving comprehensive rehabilitation services since infancy. He has a complex medical history due to his multiple physical problems but has made progress with the support of his parents, doctors, teachers, and therapists.
Carlos has had 12 surgeries, of which two were brain surgeries. We were told that he may never walk. You should see him trying to run. He is amazing. Carlos’s right foot is about 3-4 inches shorter than the left foot but he took his first steps, actually walking by himself, at the age of two!
Carlos has also been diagnosed recently with autism. He is presently going through a series of evaluations for the autistic spectrum.
Now Carlos has a sister, Isabella Luz Chaluisan. She is three and she refers to Carlos as her “baby brother.” She truly feels that she has to take care of him, and she does a wonderful job.
I hope that these few words can help you understand the story of Carlos (Superman) Chaluisan. I would like to share the following poem that was sent to me by another parent of a child with special needs:
WELCOME TO HOLLAND: A Special Needs Poem by Emily Kingsley
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
So you must go out and buy new guide books, and you must learn a whole new language, and you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy. Less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…. and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say…”YES THATS’S WHERE I WAS SUPPOSED TO GO… THAT’S WHAT I HAD PLANNED.” and the pain of that will never, ever, ever go away….. because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely thing … About Holland!
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