Tuesday, January 5, 2010

My Story with Sensory Integration Disorder

Imagine a young boy running and laughing after a ball in the street. You hit the brakes to slow down as he jets in front of your car and see his mother running after him waving an apologetic smile towards you. Driving away you notice he must be four or maybe five years old and his mother is required to still keep a close eye on his ventures or he will get himself in trouble by unknowingly falling into danger. This is the natural way we each think children develop and need be parented.
Fast-forward with me to the present reality and see two healthy, attractive children who are ages seven and nine years old. These children struggle in school and socially struggle making close friends. Loud sirens terrify them and thunderstorms cause fear so deep that they can’t stop trembling. These reactions and symptoms do not sound that unusual. The diagnosis they received last year of ADHD also seemed a normal progression in today’s school age children. This was true in my life, for my children, until I read a local article in a child’s magazine regarding, Sensory Integration Dysfunction. I never realized the depth of what reading this article would produce for my life.

My life has been filled with many amazing moments but many tears have fallen amidst the unexpected. I always dreamed of being a mother. At the age of nine I began to fantasize and play mommy with my baby dolls. I remember vividly planning my husband’s love, our wedding, and children to follow. My dreams always played out with my family being a healthy, perfect, God-fearing family. The plans we have for our lives is often different than the true journey we travel. In Oct 2002, my two little bundles were delivered not by a stork but rather by social workers who were readily handing off these two precious children to an eager foster family. Kyle came to me at 3 years old and Caylee at 14 months. The first things I learned about these new bundles of joy were sad. Kyle had been so neglected he didn’t know how to play with toys. Caylee wasn’t walking or talking and was unable to hold up a cup to get a drink by herself. This is the first phase of my path where I dreamily believed all that mattered was giving them enough LOVE. On December 3rd, 2003 my babies officially became my adopted children who I wanted to learn to love more each day. Love is always enough to heal and remove all of the bad they have suffered…right? I always held that deep belief. May 2009 will forever be a road mark on the journey of my life.

In Oct 2009, I took Kyle to a spirit-filled Occupational Therapist. I was referred to go to her for accurate evaluation from a counselor who attends my church. Walking away, four hours later, I was faced with a reality that was breath-taking. "Mrs. Welsh, your son who is almost ten has a serious brain injury. He is functioning with the cognitive, social and emotional development of a five year old. His therapy needs to be intense and will assist in stabilizing some of the absent areas in his development but we can’t be sure it will completely cure his damage" …………How does the truth of this diagnosis sink in to a mother who thought all the love poured out into him should have been enough to make up for the missing links? ……….Daily, I’m discovering missing links are always missing. The only way the puzzle fits perfectly is by filling in the holes with meaningful replacements or finding the pieces lost.

The next day, I took Caylee in for her evaluation and she was also diagnosed with Sensory Integration. Her disability set her back a year and a half but she was young enough when placed with me to receive much of the needed nurture at a young age. Developmental areas with oral stimulation regarding chewing and other word formations are lacking but with therapy there is much hope for a full recovery.
The continued learning to come will be a struggle although, filled with laughter and accomplishment. The deep pain I face right now is how to look at my son and daughter and realize the damage.

I saw a young boy around the age of nine today at Occupational Therapy. He walked with a slight limp and his neck muscles were not strong enough to hold up his head. He gently sucked his fingers for comfort and looked around with big, interested eyes. The reality of his handicap or brain injury was noticeably obvious. When looking at my children the obvious signs are absent. The internal missing holes are there but unable to be seen to the naked eye. Daily, I hope to learn how to see them as special needs (the "walking wounded") and use the love that heals, along with the therapy, to complete their journey towards healthy futures.

Consider the natural evolution of how our children grow. Children start out as infants and before we know it begin to toddle around and balance against tables and chairs. Many say in a blink the same child is suddenly discovering the opposite sex and acne. When children miss the loving gestures of being rocked to sleep and held up by loving arms to steady them as they learn to walk, it greatly changes the makeup of their brains. Many, if not all of children who are adopted suffer with the dysfunction of Sensory Integration. Please, love on your children while you have them and nurture them with the soft touch of a loving parent before they are more concerned with acne than your attention.

My son ran across the street. His legs are long and he ran to fetch the ball rolling ahead of him. He looks as though he is nine or ten years old to anyone viewing but the truth is unseen. I must be there running behind him, waving an apologetic smile at the car who slows as we cross the street. Though he appears old enough to make it on his own, without supervision he will unknowingly put himself in the line of danger.

Amber Dawn Welsh – Founder of eXtraordinary Inspiration, *EI* Ministries