Casey was born in 1994 after a difficult labor and an emergency c-section. She experienced fetal distress (low oxygen supply) through the last hour of the natural delivery attempt. It's possible this is associated with her DSI, but no one can really be sure.
Casey grew well and normally but seemed slow to start talking. She also seemed impervious to pain -- she could run full-speed into a table, bounce off, fall down and get up without seeming to be bothered. At age 2, when she still wasn't making single words or two-word sentences, our pediatrician referred us to the state Special Children's Clinic. A play-based assessment indicated Casey qualified for services, but they couldn't provide any concrete diagnosis. Casey was seriously delayed in speech, of course, but also in gross motor and fine motor skills, and Casey was not yet toilet trained.
Casey spent a year with Special Childrens Clinic. During that time we had consultations with a pediatric neurologist (who also really couldn't give any hard diagnosis), a pediatric ophthalmologist (eyes were fine) and the SCC audiologist (ears were fine). So the senses seemed to be working but Casey seemed a little disconnected from them. Her focus level at times seemed almost like autism... one doctor gave us that diagnosis but we fought it. Casey was not autistic by any stretch! For the first half-year we lived with a working diagnosis of Pervasive Developmental Delay -- Not Otherwise Specified, a catch-all for an autism spectrum disorder not clearly captured by the others in the category (like autism, Asperger's syndrome, etc.)
Then someone at SCC noticed an article about Sensory Integration Dysfunction. We tried some of the coping strategies (including blanket wrapping and rolling)... and they worked! We seemed to be on the right track at last. When Casey turned 3, SCC no longer provided her services... she began going to an Early Education class operated by the school district at a nearby elementary school. She also received speech therapy at the university with support from the Masonic Scottish Rite charity. And she began to show steady improvement. The autism diagnosis finally fell by the wayside as Casey began to develop relationships and attachments with her peers.
It's been an uphill battle and not just for Casey. We're required to regularly educate Casey's teachers or other therapists on what DSI is, how it affects Casey and how we can all work together to give Casey a rich life. She still gets regular speech therapy -- while her vocabulary and sentence composition are mostly age-appropriate, her diction is still well behind. She can't feel the muscles of her mouth and throat, you see, to shape the letters properly. But she improves steadily. She finally mastered toilet skills at age 8. She still gets overstimulated in crowds or noisy social settings, and her ability to organize her physical space runs headlong into a wall when toys and clothes get too jumbled. But knowing what patterns of stimulation disturb Casey is the first step to helping her learn to cope.