To be or not to be a syndrome

Both my children are diagnosed as deafblind, also known as Deaf Blind, Deaf-blind, deaf-blind, etc, depending on which government website or organization’s website you check out. To me, they are hard of hearing and have low vision. They are not completely deaf, nor completely blind. When they were younger, the experts needed to do genetic testing. So, we went that route. Actually, only until the insurance said they would only cover a handful of tests. By the time we figured out what they needed to be successful, we didn’t care what caused their diagnosis. They had extra needs, and we as parents would figure them out. Whatever it took for them to be happy, and not douche nuggets, was our goal. Don’t get me wrong. They are douche nuggets to each other, but not to others, lol. But I’m off track…
After some testing, they concluded that the boys had a bit of many syndromes, but nothing that they could officially give as a cause. At that point, we didn’t care. Unless they were going to create a new “Savickas Syndrome” where we would get a trademark and royalties, it just didn’t matter. Don’t get me wrong. Having a definite cause/diagnosis/name for what your child has, is definitely beneficial. It gives a sense of what the future may look like, or even a sense of community when you find others like them. It gives you a central location to ask questions, share information and resources, and a place to belong. With my kids, we belong to many places. We have the deaf/hard of hearing community, as well as the blind/low vision community. We also take and learn from the developmental/cognitive disability community. The key here is community. There are others out there who have been going through what you are going through. They have walked the walk, sat down, had a cup of coffee (glass of wine, in my case), bought a t-shirt, and returned. They are a wealth of information. They are willing and able to share the tales of hard times, and uphill battles, so that others can learn from their mistakes. But they are also more than willing to help celebrate the victories!
So, we may be “The Man Without A Country”, but we have community, and that is so much more.
Take that you no name syndrome!!!
Find your community!

Eva Savickas
A typical mom to special children

Add Comment

Your email address will not be published. Required fields are marked *

Skip to toolbar