Lots of Love in a Small Town

My name is Hurain, and I am very lucky to have a brother with Down syndrome named Amad. He is incredibly special to me and has introduced me to a side of myself I might’ve never met.

I am also lucky to work for GiGi’s Playhouse and be a part of this family.

I am from a small, southern Illinois town called Swansea, where diversity is not the norm. Our story of Amad’s birth is an all too familiar one. The fear of what the future would hold, along with the unsupportive words from those close to us, nearly overcame us. Amad faced many struggles and didn’t receive all the help he deserved. It was difficult to find therapists to work with his specific needs. He fought to learn how to walk while wearing leg braces, he grew frustrated when people didn’t understand his signs and words, and he was definitely a runner. We spent hours chasing him down the street, neighbors would bring him home when we hadn’t realized he had escaped, and we once even requested a K-9 unit to find him in the snowy cold.

In school, he was automatically placed in special education classes and we had to advocate for him to not be treated like an outcast. He was a regular kid with regular interests and we wanted him to feel that way. When he was in 8th grade, he made the basketball team and played at some of the home games. Cheerleaders sang his name and the entire crowd in the gym chanted along and he was a star. It brought tears to my eyes every time. In those moments, no one saw his diagnosis, they just saw a kid who loved to play basketball and always had a smile on his face.

My family is quite large. Sixteen of us grew up living in one house in Swansea. Amad received all the love he wanted and more growing up, and he’s always been the center of attention in our family. He’s been taught right from wrong, how to speak two languages, and how to care for those around him. Every day he learns something new and is praised for it.

Amad is now a sophomore in high school and he will soon turn 16. There are so many things left to the unknown. His environment is so much more unpredictable and there is significantly less that we can control in a school of almost 2,000 students. At this point, he doesn’t understand Down syndrome or what it means in regards to other kids his age, and there are always people who will speak out of ignorance or hatred about what they can’t understand.

Amad certainly is a moody teenager and will always let us know when he’s upset or when he doesn’t get his way. To this day, he struggles with communication and articulation. There is so much untapped potential inside him that won’t thrive in a small town. I truly feel the distance between us and I long for him to be here so I can help him fight for himself and do things that are particularly challenging for him. When he was younger, he loved to dance and didn’t care who saw, but lately he has been more reserved about it. He came to visit me a few months ago and was able to attend the Teen Dance Party at the Playhouse and he danced like I haven’t seen him dance in years! He also participated in a GiGiFIT Teens class, and I shed a tear watching him benefit from every moment of it.

The access to these amazing programs must not be taken for granted, and I see that every day when participants learn their own potential during fun programs like Destination Discovery and Teen Tastic. I have learned a lot from being here around amazing families that never stop fighting for their children and I am determined to never stop fighting for Amad.

-Hurain Jaffry

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3 Comments

  1. Cheryl Herrera on March 7, 2019 at 9:22 pm

    Great story. You are a wonderful sibling to your brother, Ahmed..

  2. Susan Hartl on March 8, 2019 at 9:28 am

    You are a wonderful big sister and Amad is amazing. I truly enjoyed being there for him in his younger years. He is lucky to have such love and support from all of you.

  3. Diane Gassiraro on March 10, 2019 at 6:45 pm

    He is fortunate to have a caring and insightful sister as yourself. Thank you for sharing your story of your brother and life situations you have endured as his sister. Keeping an open mind is hard to do with people who do not have a special needs family member.

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