Thankyou for the opportunity to add my preemie experience. Just as you commented,, little is known about the experiences of adult preemies.
I was born in the mid 1950s in a small town in northern Montana, 30 miles from the Canadian border.
I developed a moderate case of ROP, & started wearing glasses at age 2. My mother noticed vision issues when I was 7 months old & said that when she placed food on my tray, I would move my face to about an inch away before I would take any. Although doctors were familiar with Retinopathy of Prematurity, there were no treatments for it, so mine progressed naturally. The macula’s should be positioned directly behind the pupil, but mine have shifted towards the center so that each one is near my nose, almost at the edges of the photo. The term for this is called ‘dragging’. I have always experienced sight challenges & was unable, for example to see the blackboard. My reading distance is about 4″ from my eyes.
In addition , I have some heavy duty sensory issues, neuropathy from Diabetes, as well as multiple neurological symptoms, learning disabilities, poor motor skills & brain processing issues as well as many other issues. Therapy for Sensory Dysfunction did not exist, nor did special education or alternative PE. I attended school with the ‘regular’ students. Teachers & educators were not aware of these issues, and rather than receiving the support that I needed, I was blamed, accused of being lazy & stupid, scolded for poor grades, when I was actually trying as hard as I could. There were no tutors for me either. PE was a nightmare every day, as I was unable to do sports, catch balls, swim, run, roller skate, or other activities. I spent an entire summer practicing to ride a bike when I was 12, because I had failed on earlier attempts. Having invisible disabilities in a time when no one was familiar with them (not even family or parents) was humiliating & embarrassing, & I spent my life ashamed of & hiding how I functioned. I knew that I was different than other people, but didnt know why. At home, I was scolded & blamed for not listening, following instructions, & getting poor grades.
I first asked a doctor when I was 16, why I was different & he just ignored my question, as did all other doctors & social workers. When I was 45, after a google search, I learned about Sensory Dysfunction & I tried to receive a diagnosis, only to learn that only children are treated for it. The private therapy is too costly for my budget, so I still have all the symptoms, even at my age. Sensory Dysfunction & many disorders from prematurity are not recognized as an ‘official’ condition & does not have a diagnostic medical code. In addition, most doctors feel that children ‘catch up’ with other children & eventually outgrow sensory issues.
2 years ago, I had a mild stroke & had brain scans done. This was the first time I looked at an image of my brain. I’m sure people’s brains vary, but mine didnt look right. Since then, I’ve read the articles that show brain scans of people with SPD & Autism in connection with a study from the University of San Francisco that shows variations in brains of people with sensory disorders.
I don’t say much about the issues I have to deal with on a daily basis, because people just don’t understand. They expect me to speak & respond as quickly as they do, don’t understand when I become confused or are unable to remember details to fill out medical forms, or follow a string of instructions.
I have ‘gotten by’ from writing everything down, such as new job instructions, to directions around office buildings, to instructions from doctors, as well as how to find my way to and from stores in malls and how to get to and from the bathroom and around hospital corridors.
For employment, I worked in retail, as office work was too hard on my eyes, then I went into the sewing machine industry, teaching classes on how to use sewing machines & sergers, as well as specialty classes. It probably sounds odd, that I can sew with my poor vision, but my close vision is better, so I really did ok. My ROP prevented me from driving, so I took public transportation to get to work locations, appointments etc.
Over the years, I have lived in 5 different states, have traveled to many different places using trains, busses, planes, alone & with spouses and friends. I love to cook & have done so since I was a teenager.
I was married at a young age & suspect that my invisible disabilities contributed to my ex wanting out. Maybe, he felt that I was too ‘needy’. Fortunately, later in life I met & married the sweetest, most understanding person & he is supportive & helpful in many different ways.
In concluding, I just wanted to say that as a formerly premature baby with no support or therapy, other than the eyeglasses, I feel that these experiences have made me a stronger more compassionate person & hope that all preemies can accomplish what they want & fulfill their dreams.