I met with Imani’s high school counselor today for some business related to her college applications. She said that she would not have known about a lot of her activities if I hadn’t told her because she is so humble. I told her that she doesn’t like to talk about herself. I do that for her, a little too well maybe. Then she said that I’ve been a remarkable role model for my daughter, accomplishing so many things as an independent woman. It kind of took me by surprise because I’m used to feeling like people think I’m inferior as a single mother. But she put a whole different spin on it. We should treat all single mothers this way. She didn’t try to tell me that she knows what it’s like, and make it about her. She just focused on our story, and honored us in a very dignified way.
#nationalpreemieday: This was Imani at 5 days old. She was 2 pounds, 6 ounces, and 14 weeks early. She had a significant brain hemorrhage and a condition that causes blindness, was fed through an IV, lived in an incubator, and was breathing with a ventilator here that I’m holding in place. Plus a list of other issues and a prognosis filled with uncertainty. She didn’t breathe on her own for months, and went home when she was apnea and bradycardia free for 24 hours – which means she didn’t stop breathing and her heart rate didn’t drop. I had just turned 19, was a victim of sexual abuse & had complications that were genetic & accelerated by socioeconomic stress & domestic violence. I was unmarried, living with a schizophrenic roommate who died from suicide. We moved from place to place to survive on home care worker wages and were regularly in imminent danger. I almost died in a car accident that happened because I was sleep deprived & malnourished. She almost died many times from a number of causes. I didn’t know if my child was safe much of the time because I had to leave her with unstable people who were all I had in order to work. It’s a long, traumatic story. I still can’t believe that we are still surviving. Nobody knows what it has been like, except for us. Our triumph is not in any vainglorious declarations, but in the next day building on the last, toward a vision of happiness that includes transforming the ugly into beauty around us and for others.
Last week, I had the honor of delivering remarks at the 10th anniversary celebration of the Autistics Association of Greater Washington, one of the largest independent Autistic-run social groups in the United States. For my 2015 Autistics Speaking Day blog post, I’ve decided to share those remarks:
Thank you so much for having me, and I have to say that it’s an honor and a privilege to speak to AAGW. I am profoundly grateful to Mark and Chuck and the other founders, leaders and members of AAGW for pulling this group together and making it a reality. This being your 10th anniversary, it’s important for us to take a moment and realize that the Autistic community has grown a lot over the last 10 years and Autistic people in all of our diversity are a lot more visible. A decade ago, it was a really scary and unprecedented thing to try…
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