"Gregory's Story"

Fred & Gregory Carroll

Lakeland, Florida

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"Gregory's Story"

 

Gregor is thirteen years old. He was born with Septo-optic dysplasia, a disorder characterized by midline defects, underdeveloped optic nerves that are accompanied by nystagmus, which is easily observed as shaking eyes. Gregor also has hormone abnormalities caused by an under activity of the hypothalamus and a non functioning pituitary gland. He is non verbal, has autism, and has a lot of sensory issues.

Early on we were told that he would never be able to see much of anything, yet today he uses his limited vision so well that most people don't realize that he has any visual problems. Gregor also looks quite healthy, and really he is, however that can change quickly when stressed, due to his endocrine dysfunction. He does have developmental delays, likes to climb on everything, puts everything in his mouth and numerous other behavior issues. One of the first distinct things that I recall Gregor doing was making things spin and wobble to a stop on the table. He really seemed to have a knack for making plastic plates or lids wobble for an extended time before coming to a stop. At the time I saw nothing wrong with this activity, but he kept wanting to do this for hours at a time. He did learn songs and nursery rhymes at such an early age that some people called it remarkable. Somewhere along this time there were childhood immunizations and a grand mal seizure, and no more talking. For the next number of years it didn't matter that he didn't talk, because someone was right there to keep him safe, We began to anticipate his every need.  It is difficult to get him to interact with anyone. He just wants to balance postcard size items in one hand and tap them with the other hand, or to be in an elevated position such as sitting in a dining room chair, sitting on his legs and feet and pushing all of his weight on one finger at the edge of the table, getting that sensory input, until his finger slips and he goes crashing to the floor. Gregor can learn, but he is not interested in paying any attention to anything that you may have to say, and he does not talk, so he will start to scream, stomp or whatever else he can do to get you to leave him alone. We have a great time together and he goes everywhere with me, grocery store, home improvement shop, etc.. We get a lot of stares when he lets out a loud yell, or while I am constantly reminding him to leave items on the shelf. He does receive therapies, PT, OT, Speech and behavior. We are so fortunate to have these services, although thirty minutes a week really isn't much. He was getting thirty minutes twice a week until a year ago, I recently pleaded with the therapist to go back to twice a week but they said no because of his limited progress, Go Figure that one out. I joined a local support group about two years ago and have gotten a lot out of that. That is where I learned about the FND Heart and Hope Conference. We have a long way to go, and it seems to be hard to find support staff that  is willing to look through all the behaviors and sensory issues and see his amazing abilities and potential.

~ Fred Carroll

 

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