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"Hi. I'm Isabella Rutan."
I am almost six years old. I love to laugh and spin things. I flap my hands faster than anyone you know, and I could jump for hours. Larry the Cucumber is my BFF. And, for me, bath time and walks are the best. I love music and dancing. Tickles and popsicles are my favorite, and mama’s stainless steel spatula is the coolest thing in the whole wide world! Isaac is my older brother, Kayleigh-ann is my big sister, Alaina is my twin, and Ava-Zoe is my little sister. I may not speak at all, but my eyes say volumes. Sometimes I fight and scream and bang my head, but it’s because I’m hurting and that’s the only way I know to express my pain. I might not be like most kids you know, but I’m so very sweet. I’m precious. And I know what love is.
You may have guessed, I have autism. And there are so many other children just like me.
I have an incredible team of caregivers and therapists that help me. Danielle is my specialized shadow and ABA therapist (we do everything together), Jasmine is my in-home Applied Behavior Analysis therapist while Ashley writes our programs, Irene and Betty do my occupational therapy, and Kate and Beverly are my speech therapists. They help me with all my sensory assists like my compression vest, weighted helmet, squishy balls. Helping me transition, they help me try to sit with the group, help me eat my own food, and teach me not to throw things, they apply deep pressure to my head and jaw to help with the screaming and head banging. They are trying to help me learn important things like how to use the potty, to dress myself, to speak or sign. They help me learn. To make progress. To overcome. I love them all.
This is Isabella's Story.
It’s a familiar story for anyone suddenly thrust into the world of autism.
Until she was 20 months old, Isabella was “normal.” She happily played peek-a-boo with me, laughing and calling me “Ma-ma!” She played with her twin Alaina with that special connection only twins have, and she adored her big sister Kayleigh-ann, who entertained her for hours. Then the nightmare began. At first Isabella was just not acting quite like herself. It was as though she didn’t feel good and was just a little irritable. Within a of a couple of weeks, she had stopped interacting with anyone and didn’t respond to her name at all. Suddenly, the screaming started. She screamed these blood-curdling screams all day and all night. The doctor in Guam couldn’t find anything wrong, but she didn’t stop screaming. Day after day and all through the nights, she slept only a little in my arms when completely exhausted. She would moan and wail constantly, burrowing her little face into my cheeks and neck smearing us with spit and snot. Which she still does on occasion. She also engages in fecal smearing and head banging. Back in the U.S., Isabella was diagnosed with autism. Those of you who have gone through the heartbreak of losing your child while not losing the body they lived in can relate to the helplessness, the hopelessness, the anger, and the sadness. Isabella remained in this state for over two years. Shut off from the rest of the world, she (and I) lived in a bubble of misery and pain.
Then one day she didn’t scream the entire day. She began to seem more interested in the little things I would give her. She started balancing them and spinning them. I don't even care that the professionals call this autistic behavior “stimming”. Hey, in my book, if she's not screaming, or smearing, or banging... I'll take it. She seemed for the first time in forever to be aware of the world around her and to be enjoying herself at times. Over the past year and a half she has started making some really good eye contact, smiling, and laughing. I did not get back the Isabella that I lost. I grieved for her, but made room in my heart to fall in love with the Isabella that I have now. Isabella still has some days and nights of screaming, fighting, and slamming her head into things. She is not potty trained and she does not speak. But, then again, these are but small things to the God who is on her side. I am confident that Isabella will overcome. Such tremendous life emanates from her little being. Isabella is strikingly beautiful. She is as strong-willed as the day is long. And she is quite a clever little booger, getting away with whatever you’ll let her slip by with. Antarctica would melt at her smile, and she is so quick to laugh that belly laugh of hers. She, once again, loves her big sister, pulling on her hand, “asking” for tickles.
They tell me there is no cure for autism. But this mama is a believer. I am believing for a cure. I am praying for a cure. May those of us who love these children, band together and continue to believe, and to pray, and to wait, and to LOVE, no matter the cost or how long it takes. And while we wait, we can indeed LOVE. God’s love made tangible through us can turn the tide. “Love's Voice” is my project to promote autism awareness. But, more than that, like the story of the Good Samaritan, I am seeking to promote a tangible outpouring of God’s love. A love that actually does something as opposed to doing nothing. A concern that cares compassionately and a confidence and sense of humor that meets needs joyfully. A Love that makes an impact for the good of these children, the families, the caregivers, the therapists, the teachers, everyone who is in the equation of helping these children WIN. I so love Isabella and those like her. Love is… patient. Love is… kind. Love is... believing against all odds. Love is... meeting needs. Such a Love does exist. And such a Love never fails.
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