Gracie's journey-Success!

by Susie Dod
(Duluth, GA)

I just found this website today and I am thrilled to see the amount of information offered. I have a 15-year-old daughter that was diagnosed with Sensory Integration Dysfunction at age 2 ½. We feel very blessed for her to have been diagnosed at such a young age. Although, when I look back to those first few years, it's clear that she struggled even before birth.

Labor was short with Gracie, but delivery was long and intense. It was obvious that she was not anxious to enter this sensory overloaded world. She came out sunny side up weighing in at 9 pounds 12 ounces. Breastfeeding her was extremely difficult. Thinking at the time that something was wrong with me as a mom, I had much guilt when deciding to stop. I now know that her feeding difficulties were because of her low muscle tone and her inability to latch on or suck. After trying every brand of bottle nipple, we found one that worked and ended up with the most expensive formula as well.

Gracie did not sleep well. Every slight noise would wake her. We tip-toed around her for years. She still sleeps with a white sound machine. It works!

Speech therapy led to the SID diagnosis and many years of occupational therapy. We installed swings at home, had a sensory room, did the brushing along with listening and vision therapy.

Gracie has blossomed into a talkative, engaging teenager. From a painfully shy child to now having a passion for performing on stage. From a child who feared everything outside of her own world to now loving to travel around the world. Her struggles now are mainly with anxiety, strength, posture and coordination, and social connections with peers.

We take each day at a time and marvel at what she has overcome.

Gracie's dad and I have always wanted to shed a light on this disorder. In 2002, Gracie's dad wrote a special piece describing a child with Sensory Integration and submitted it to several media sources. A local newspaper responded and published an article. WebMd.com also posted an article. Gracie's dad's writing is titled Traffic Jams. I've included it below.
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Traffic jams aren't exclusive to busy highways in big metro areas. Sometimes they even occur inside a child's mind. Let me give you a sense of what a mind jam is like by telling you a story about Gracie, a 9 year old diagnosed with Sensory Integration Dysfunction, a breakdown of the central nervous system.

As a baby, Gracie was terrified of swings. In fact, she feared all sorts of toys that swung or spun or swirled. On those rare occasions when she mustered the courage to mount a toy or swing, she'd scream until rescued. Fear, combined with an ungrounded sense of how to process the movement, left her frozen like a statue.

As she grew, it was common to see Gracie sitting by herself at recess, looking longingly and admiringly at other children's playground feats. When she walked, she did so unsurly and often clutched for the security of something solid along her selected path. A curb was like a cliff, a dangerous precipice to be approached gingerly. Stepping off a curb entailed sitting down and shimmying forward until her feet touched the pavement; scaling one looked like a slow motion game of Twister first came the right hand, then left, then the knees, followed deliberately by the feet. When erect, she'd finish the climb by holding her hands up in the air like a surgeon entering an operating room, baffled about how to brush the specs of dirt from her hands. When, years later, she finally learned how to rub her hands together, she did so with such vigor one might have thought she was trying to start a fire.

As a toddler, Gracie hated sand. At the beach, she wouldn't walk in it no matter how desperately she wanted to reach the ocean. If sand got on her feet, her whole body would tense up, shoulders squinched as if a snake had slithered down her back. While other children built sandcastles and played on the beach, Gracie simply beckoned: "Carry me." A single grain of sand anywhere on her body could wreak havoc, like the pea under the bed of the fabled princess.

With pre-school came full-blown anxiety attacks. Seemingly a single breath away from emotional paralysis, Gracie's countenance was pale, her body rife with fear. Bad feelings, as she came to describe them, were like invaders, taking up nearly permanent residence in her mind, spreading like cancer. To rid the demons, she'd shake her arms and stomp her feet. For Gracie, this ritualistic purging of her overwhelming anxiousness was an exhausting, frustrating, and often futile endeavor.

A fourth-grader now, Gracie's struggles continue. Good grades spawn from hard labor not nature, the grueling girth of dyslexia impinging mightily. About children like Gracie it's been written that school, which rewards buckled-down performance and conformance, often simply causes an SI child to buckle.

It's true, years of occupational therapy, vision and listening therapy, counseling and endless familial support have tempered Gracie's challenges. Vanquishing them is for tomorrow, and the next day, and next. Sharp, engagingly conversant, kind, generous and loving, Gracie is as sensitive to the feelings of others as she is out of sync with her own, a puzzling irony not lost on those whom know her best. I know because Gracie is my daughter. Having witnessed each of her battles, she is also my hero.

I've often wondered what living with Gracie's challenges would be like, trying to cope with a vertigo-like perception of space while walking on hot coals on top of shifting land bombarded by disjointed noises and strobe lights surrounded by pungent smells thinking there's no hope and fearing each step ahead. That's a mouthful, and that's a mind jam. On a good day, I think life would be merely chaotic, like the mall on the day after Thanksgiving or a never-ending roller coaster ride inside a rock concert.

As undoubtedly special as Gracie is, there are 15 million other Gracies in the U.S., each with a story whose chapters are as unique, poignant and remarkable. I hope you'll consider shining a light on Sensory Integration Dysfunction and the children who live with it. I'll be happy to put you in touch with psychologists, occupational therapists, educators, parents and children with SI.

Thanks very much for your consideration, and I look forward to hearing from you soon.