Kyle's Story

by Tracy Driggers
(Fairfield, OH, USA)

Kyle was born at 24 weeks gestation. He spent his first six months in the RCNIC. We knew there were possibility that he would have a learning disability or delay because of the health issues and slight brain bleeding in the left ventricle, but no-one explained to us what to expect from possible SPD. Kyle had speech and motor learning problems from the get-go. He didn't speak much until he was three. He choked easily on food and flapped his hands at the table, splashing food on the walls. Even while still in the RCNIc, he did not like loud noises, lights, etc. There was a nurse that he couldn't tolerate because she was too loud. He could barely tolerate being touched and they had to stop waxing the floors a few times because his levels would become dangerously low-almost resulting in death (from the noise and vibration). As he got older, he would refuse to flush the toilet. He would cry when we went to public restrooms, especially with the automated flushing toilets or loud hand dryers. He does not like congested or loud places-that most kids enjoy. We had no idea what was going on.

Family would complain that we didn't teach him to be gentle or cut his finger nails because he would scratch people and hug too tight, although he did not like others to touch him much. They did not understand that he did not like to be bothered or around big crowds. Being that he was the first grandbaby, they had a hard time accepting that and wanted us to drag him to everything everywhere. This left us feeling lonely and misunderstood.

He does NOT like to be thrown around, swinging, gets motion sickness, and also did not like the feeling of sand on the beach. Kyle wraps the blankets around his neck at night so bad that I go in there at least once every night to untangle them in fear that he's going to strangle himself.

We had early intervention which helped alot. I really started noticing that he was not outgrowing these things around the age of four. He repeatedly turned pages of wooden and plastic books, turned and open/shut things repeatedly, layed and felt smooth surfaces (he would lay in the middle of dance floor at weddings and refuse to get up). Of course, he would get overstimulated once the party picked up and we always leave those things early. I worried that he had something in the Autism spectrum but his pediatrician was not concerned at all. Once he turned seven, I insisted that we see a specialist. We did and he was diagnosed with SPD, ADHD, and speech delay. We started treatment immediately and after racking up six thousand dollars in bills, we learned that it is not covered with our insurance. So now we are stuck with the bills and no further therapy. I am currently exploring other options. My husband and I are/were both teachers. I'm sure this has helped Kyle's situation (as far as learning), but it is just as frustrating.


Now that he is in school, he has issues. He does not communicate well with the other children. He hits them, bumps into them and does not like anyone invading his space, although he invades the space of others. Although he does well academically, he does not stay on task nor complete much of his work, especially if it is writing or something that he has to self direct. His good grades do not allow him to be on an IEP, however, we were able to get a 504 with some extra accommodations put in place.

He plays with only a few of the neighborhood children. If they invite other children to play, Kyle will retreat to the sidewalk and watch them or wait for the other children to leave. Usually, he'll come home upset as he does not like the overstimulation from the other children and is unable to keep up with them. He won't even ride bikes with them because he is afraid of the speed, height, and does not trust that he won't fall. It breaks our heart.

As I type this, he is pacing the living room, turning a simple toy repeatedly. I have insisted that we do something fun, but he argues that he just wants to do that.

I have looked for support groups and such and have not turned up much. It is isolating because no one understands what it is like or why your child is like that. I've even been told that spankings would keep him from hitting other children. I welcome any advice or support. I appreciate reading everyone's stories.