When the Early childhood Intervention Team in our district first evaluated our son for Sensory Integration at age 2, I easily accepted their conclusion that our son’s developmental delays would naturally be overcome in time. They told us that any sensory issues that our son presented could be addressed under our care. They provided a list of activities that we could do with our son. For the first year, the list seemed to be working. Back then I did not understand the true nature of this disorder.
What I failed to see was the Sensory Integration Disorder, still lurking just beneath the surface, eating away at our son’s confidence, too subtle to really make a grand entrance when it arrived in its unpredictable way. I have found this to be the true nature of this disorder. Sensory Integration Disorder can be predictably inconsistent, fickle in its presence and absence, and in its manifestation.
About 5 months into preschool our son started to have intense emotional responses when facing challenges. He grew frustrated more easily and he started to say that he didn’t like himself. I remember thinking, “How can my little boy not like himself?” What had I missed?
My son could not climb as fast as his friends. He was afraid to swing too high “because he would fly into the sun”. He did not like to ride his bike too fast because the ground “seemed to far away” and he might “crash into it”. He had a hard time finding the all the words he knew were in his brain but didn’t seem to come to him when he wanted them to. Socially, our son would be inconsolable when one of his friends withdrew their friendship and said “You’re not my friend anymore”. My son was spiralling downhill fast. I remember watching what looked to be all these peculiarities that did not seem to add up to a major problem individually but collectively, they seemed formidable. Then I read “The Out of Sync Child” and it all became clear. Behavior that seemed to be out of the blue was really the manifestation of untreated sensory integration disorder coming to a head.
Within weeks I brought our son for a full developmental assessment. This revealed mild sensory integration disorder. Our son began OT, speech and PT twice a week. After meeting with his sensory certified OT for the second time, our son waved good bye to him as we were leaving. After a few steps toward the exit, my son stopped abruptly, turned and sprinted, arms outstretched, into the arms of his OT. “Thank you,” he said. An innocent gesture said so much about how our son was feeling.
After only a few months into therapy, our son changed. My husband and I began to incorporate a sensory diet into his days and worked on his speech and helped him to exercise in ways that would increase balance and bilateral coordination. Our son grew more confident and self assured with each week, month and year. Now, he is five years old and is beginning to learn to find his own ways to accommodate his needs.
Having had this experience with mild sensory integration, I am in a unique position. Our son’s days are not ordinarily plagued by dramatic displays of sensory regulation problems. He follows a sensory diet that fits the needs of a child with Mild Sensory Integration Disorder. Subtle means subtle not simple or less severe. Raising a child with Mild Sensory Integration means walking a fine line for me when advocating for my child’s needs. Finding creative ways for others to be able to relate to my son, who seems fine much of the time, but not all of the time, continues to be the hardest challenge. At times our son needs accommodations to help him learn. At other times he doesn’t. This does not fit the typical profile of a special needs child nor does it fit the school’s established profile of a special education student.
Schools have procedures set up specifically for special education children in their schools. When a child needs less, you may have to learn how to fight creatively. I am learning to become more comfortable being a squeaky wheel. I advocate with a sense of diplomacy and entitlement. When I am tempted to take a step back because I hear how well my son is doing and look how far he has come, I take a moment to be thankful for the truth in these words. Then I gently remind myself that my son is doing well because of everything that we have in place to help him: a good daily sensory diet, a routine, an understanding of his limitations, and an appreciation for the gifts that he does possess.
The most important lesson that I have learned as a parent of a child with mild Sensory Integration Disorder is that mild matters. Any degree of SID needs to be addressed. Untreated Sensory Integration Disorder hurts, regardless of severity. It steals what is most important to a child, a sense of well being.