Darius Jackson – chromosome 13q deletion diagnosis – his story
Darius Jackson is my 29 year old young adult son born with Chromosome Deletion 13q 31-32.
Shortly after his birth, my husband and I were given his chromosome disorder diagnosis.
I remember that moment as it was yesterday, but I can’t tell you all that was said after hearing,” your son has a rare chromosome disorder and there’s not much information and not sure what you can expect….”
We are grateful, Darius’ growth and development exceeded above and beyond our expectation! But like many other families of special needs children we have an enormous challenge and tremendous task in trying to create a productive and happy life for our son.
His life started out with early intervention including physical ,occupational, and speech therapy at 3 months, old. Darius is intellectually delayed. His speech was delayed, and we discovered later he had a hearing loss in his right ear. Features on his right side like his thumb don’t bend, right ear is low set, and his eye color is blue. Our family is African American and Indian descent, so blue eyes are unique! But I’m told not unheard of.
Other characteristics include short stature, immature balding, and flat feet. His speech is limited, but has improved with consistent speech therapy. Darius is verbal, and articulates as best he can. It’s difficult at times to understand what he’s saying, and this can frustrate him.
Living in New York City, can be an advantage with a child with a disability because of its varied services, and affords independence.
Before this global pandemic, Darius was independent in taking the express bus to his private day program at JCC Manhattan a social and recreational program designed to enhance social skills in an integrated community. Through cultural, athletic and educational opportunities. He’s been employed at the Disney Store for five years, handing out baskets to customers, and doing some product placement on shelves with a job coach twice a week, which he also traveled by bus independently.
With the onset of Covid-19, his schedule came to a squeaking halt, and he’s now zooming his activities including a baking class he attended every Saturday, which he loved.
Darius loves sports, and could name many minor league baseball teams. He’s a Boston Red Socks fan, don’t ask me why, we still don’t understand, since our family are Yankee fans! It’s been difficult for him not going to a game this year.
One of Darius’ greatest triumphs and milestones was attending a four year college-based certificate program for young adults with intellectual disabilities called, Career & Community Studies, where I learned what my son was able to do! Darius to this day, still amazes me. He is a quiet, vibrant, funny, and resourceful young man. He is an only child, but has a few cousins.
Darius has grown leaps and bounds despite his disability, and we are so grateful.
Now, is the next chapter, nervous….yet hopeful. My desire is to have Darius living in a supported community, where he will continue to strive, have some independence with the support his needs.
I hope sharing Darius’ story will encourage other families.