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    Posted July 16, 2014 by
    Justceleste
    Location
    Charlotte, North Carolina
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    More from Justceleste

    Raising a Black Special Needs Child

     
    My son was born on the living room floor, March 8, 1991, the war in Saudi Arabia ended and the city of Dhahran appeared on the news, above my head, as the doctors worked on us, my baby and I. I briefly heard the words, Down and syndrome, as the first doctor reached us. My baby had slanted eyes, but, it runs in our family, so, I didn't think anymore about those words. A week of testing to rule out his suspicion concluded with a diagnosis, "Your baby has Down Syndrome." I felt like my war was just beginning and he had another strike against him in this cruel world. He's Black, too!

    I went home a few days later, without my baby, as he had some sucking issues and others I didn't hear or comprehend. Upon my return to the hospital, ten days later, to bring him home, I actually thought they made a mistake and had other news. The nurse shockingly asked,"Oh, You're coming to get him?"
    "Why wouldn't I," said I.

    For the next four months, I fed him, changed him, while he just laid there, he barely cried, always slept. Around the fifth month, someone else noticed the baby had a smile. I hadn't named him , yet, so everyone called him 'Dude'.
    "Look, Dude is smiling, he maybe trying to laugh, he's looking at those vases on the wall," said person, excitedly.

    I didn't believe Dude could respond to anything, express anything or learn anything. The doctors were so dismal about his progress in life.

    For Dude's first birthday, I named him, Dhahran. I also wrote a poem for mothers of newly diagnosed babies with Down syndrome. I know their pain and heartache.We recognize each others' look, at eye contact and that heartwarming ,slight, smile. I planned to give my poems away at doctor's visits where I saw mothers of different nationalities,races and colors but not Blacks. We went to physical, speech and massage therapies, still no Blacks with DS.

    Dude progressed very slowly, over the years, walked at over two years old, potty trained for over five years and I never believed he would do anything. I didn't know how to teach him anything. It was so frustrating. His siblings, all four of them, treated Dude like another brother, his little sister, four years younger, taught him to ride a bike, he was eight. she ran in the house happily screaming, "Ma, come look at what Dude can do. I taught him how to ride my bike!"

    I never would have thought about him learning to ride a bike.

    Dude started school, before public school's inclusion program, which I feel was a disaster for Black children with intellectual disabilities. We lost services and real care about our children. Inexperienced teachers, many who had never been around mentally disabled children with various conditions, don't learn the same way, all put together in a room in the back excluded from the others, in poor neighborhood schools. Of the many teachers, we experienced, less than an handful fit the bill. My son graduated, at age 22, knowing no more than he did at eight, well, probably like the many of the 'normals'.

    The mandatory yearly Individualized Evaluation Plan (IEP) got so frustrating with all of these goals, dreams and visions that were lost at conception. Our last two years of IEPs, I realized and wrote on all the goals, Dude just be happy.

    Blacks with DS are excluded from activities,events and the media, catalogs, advertisements, blogs and social websites. Just recently, Blacks have created sites and organizations that cater to African Americans.

    My son and I had the courage to attend various events and meetings where no other or very few were in attendance. A white guy had the courage to say he never saw an African American with DS. This has become quite common and through my experiences, I honestly cannot claim the race card. as they just don't know. Why aren't we there? Blacks and Whites are trying to address, understand and do something about this issue.

    Over the 23 years, I've learned to love all Dude's ways, his charm, his silence, his attitude and his humor. I appreciate the facts that he won't be arrested, I haven't been up all night worrying or waiting on a phone call that he'd been murdered, no baby mama drama, as males with DS don't procreate. The teen-age years were like he was still eight years-old, he plays with toys and very easy to please. simple things are what make him happy.

    The most difficult revelation, I received this year, was in a discussion with Dr. Harpold, chief scientific officer for the LuMind Foundation, a DS research group. I learned the longevity rate has increased for people with DS, age 60, but not for Blacks, which is age 30. They don't know the whys or whats, but Dude is close to age 30, and I still just want him to be happy.

    For Dude's 21st birthday, I extended my poem into a book, titled, Dude Has Downs, and published it on World Down Syndrome Day, March 21st. In 20 pages, I expressed 20 years of raising a Black child with special needs.

    Dude served as an Ambassador for the LuMind Race for Research and will receive a RISE Award for Self Advocates, in Atlanta, November 7th, 2014. He loves dancing and music.







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