Born Too Soon but Seeing Beyond: How a Blind Boy Sees the Heart of the World
Certain students just pull on your heartstrings as a teacher. You can instantly see how sweet and unique they are; this boy was one of those in my class for three years. He was born premature and was both blind and presented as someone with autism, although he was never given that official diagnosis. He loved to listen to music and would play the same song over and over again. He would play talking books over and over again as well, delighting in the sounds. When he sang, he had the voice of an angel with perfect pitch. One of my favorite things to do with him was our “Walk and talks.” He had services with the mobility specialist and she would work weekly with him navigating the halls of our school. My job was to reinforce that skill, and we would practice our conversation skills simultaneously. He amazed me with all he knew. I would ask him who the President of the United States was, what day it was, what the school’s name was, what my name was, and more, and he would answer each question perfectly. Read his mother’s answers about this beautiful soul.
What are some of your child’s favorite activities?
Sebi’s favorite activities are: listening to music on a CD player, in the car switching between radio stations, or listening to music with his new favorite headphones. He has a keyboard player that he takes breaks from listening to his music. He used to like actual CDs to play and repeat the same song/s and same beats over and over. Not so much lately. He gets all his music fun from the radio, the commercials, the weather etc… Sebi likes when we talk about the calendar, days, and holidays, and thrives when we play “Let’s check the calendar” when he knows the dates of specific days in the future such as birthdays or holidays! He would know when or what day of the week his/mine/our birthdays will be a year from now.
What is something your child is good at doing that is not reflected on tests?
Well. I would say that these little marvels that Sebi shows us would not be reflected in tests. Such as talking about time calendaristically.
If you could describe your child in three words, what would they be?
Amazing. Grounding. Special.
How old was your child when you knew he/she had special needs?
Since his birth. He hung on to life for 6 months after he was born extremely prematurely. But that came at a cost of achieving things in his life on a delayed basis developmentally.
What is one piece of advice you have for someone with a newly diagnosed child?
Hold on and carry on. These kids show (my kid) us different kinds of life and living and we are better humans because of them.
How do you foster self-care? ( either for yourself or your child or both)?
Sebi allowed me to foster self-care, his and mine, and my family. I always thought that it is, and it was him who kept me and still keeps me sane and holding on to a good grasp to keep going. He showed me how to do it by letting me understand his needs, likes, pleasures, and displeasures. He made it simple where I saw everything very complicated and heavy.
. What are ways to help promote social skills you have found effective for your child?
I am forever grateful to have had Sebi spend all his school years here in this town with the most qualified special needs teachers like you among other ones at different stages in his path through school. So, I think Sebi’s social skills have been developed as a result of school time. He loved going to school. He graduated in 2022, yet he still knows when school starts every August since and he (in his little world of wonders) thinks he’ll go back to school. Now, he attends an adult program where he interacts with adults special ‘kids’ and he is not very fond of being an adult. Besides school Sebi knows our friends whom we visit, and he expresses interest in coming along or not. He is fond of all his relatives, cousins, and uncles/aunts. He will forever remember
the names of the teachers who taught him.
Are there any support groups you recommend for parents or children?
I am certain there are support groups for parents and their special needs children. I just do not know what they are. I cannot recommend it!
What is one meal that everyone in your family likes to eat?
Pasta is one meal we all love to eat. It is Sebi’s favorite meal for sure.
Please share anything else you want people to know. It could be something like the ways your child is awesome, your favorite family activities, or anything else you would like to share about your child.
I love Sebi with all my heart. I know he loves “mommy” very much so much that when I am not around for whatever reason and for hours at the time, he would like to wait for my return than have his brother or father take care of his needs. He likes to come for walks in the neighborhood to walk the dog or walk with me. We talk while walking and he likes it very much. Sebi is a sweet human being and the sweetest of sons a mother would wish for. He amazes us when he does magic like finding hidden toys or noise instruments that he obsesses over too much. He swipes the whole house in search for his ‘toy’ and because we know he would investigate, hide his ‘toys’ in higher places, different spots, enclosed somewhere… he will find his ‘toy.’ Then a blaming game starts among us, asking who gave it away! No one was! It was all Sebi! So, my older son – Leo has a recurring joke about this and says, “He is not blind, I told you!” Truly! He sees more than others and definitely senses more than others.