When The Challenges Are Stacked: Raising My Black Daughter With Special Needs

By ADIBA NELSON

There’s something that happens for most women when they find out they are pregnant. After the shock and awe wear off, the dreaming begins. Will they be ballet dancers or biomedical engineers? Fighter pilots or firefighters? Girl or Boy? Today, though, we, have another question to add to the mix: will they live to see their 18th birthday, or will they be cut down by the violence that permeates our society? As a parent to a child with special needs, I have another question to add in: how will I help my child exceed the imposed limits of her disability, stay safe despite the perceived limits of her cognition, and alive regardless of her gender and race?

These are the questions I find myself pondering every day. My daughter is a beautiful, squishy faced seven-year-old, full of sass and silly, who is as bright as the day is long. She rises to the challenges set before her, and the only reward she seeks is a hug and some dap. She is the kid that will hug you, only to sneak in an underarm tickle. She is also the kid who once her mind is made up, you might as well watch paint dry because she is not budging. She will find a million different ways to get her point across if she feels you just aren’t getting it, or if she is feeling disrespected. She is the perfect combination of unbridled joy, sneaky sass, and balls to the wall determination. Currently, it is serving her well because she has me, her mama. However, one day she is going to leave home. She won’t be under the watchful eye of mom, making sure everyone knows who this child of mine is, and how to understand and respect her. My daughter will be left to her own devices, armed with the skills I’ve taught her (socially, emotionally and academically), and her idiosyncrasies that play an integral role in her general success. However, these same idiosyncrasies – steely-eyed will, demand to be heard and understood, charming sass – these things will inevitably be interpreted as hard headed, stubborn, argumentative, and back talk by a society that has no idea how to hold the aspiring black woman in the same field of vision as the aspiring white woman.

How do I raise her so that she knows that these attributes are her super powers and not the world’s kryptonite, yet explain to her that the world will expect her to tamp them down because a: know your place little black girl, and b: special needs? How do I raise her to know that her body is her own, and to defend it as such, when there is a fear that turns my blood ice cold when I think that one day some idiot with a nametag might decide that her inability to verbally communicate means that she can’t say “NO.” At a time when the killing of unarmed black men and women seems more like sport for hobby, and women are being raped while they are unconscious, and the defense is “they didn’t say no,” it seems incredibly cruel to have to tackle all of that and special needs at the same time. My daughter lies at one of the most fragile intersections of them all, and yet I am raising her to break the boundaries that will be placed around her. Am I insane? No. I am her mother.

I am teaching her to crush the paradigm of special needs, and color outside the lines. Share on X

I am raising her to fight for visibility in a world that would rather she didn’t exist. I am teaching her to crush the paradigm of special needs, and color outside the lines. At times I have to teach her teachers and educational aides that she does not have a behavior problem, they simply are not listening. The limit for “tolerable allowances” is questionably shorter when it comes to our kids.

For example, last year it was reported that my daughter was having some behavior issues, and at one point she was even sent to the principal’s office. Now, I am not saying they were 100% wrong here, but they were 100% wrong here. On the surface, yes, it looked like a behavior issue, but then my husband asked our daughter one key question. “E, does going to school make you sad?” My sweet seven-year-old looked at him with tears in her eyes, frowned and squeaked out a barely audible “yeah.” That’s when it hit me, and I started with the questions.

“Are you sad because you need help to do the work, and none of the other kids do?”

“Yeah.”

“Do you think you can do the work by yourself?”

“Yeah.”

“Would you like it better if your helpers let you do the work on your own, and if you needed their help, you could ask for it?”

*smiles*

“Yeah!”

And that was that. My daughter didn’t have a behavior problem; she had an understanding problem. And the problem wasn’t hers, it was theirs, but no one had taken the time to explore fully the range of what my daughter was feeling, and expressing. As her mother, I must continuously educate even the most educated because the chips are stacked, and not in our favor. However, they don’t know about us—we play to win, and we never fold.

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Adiba Nelson lives in Tucson, AZ ,with her husband, seven-year-old daughter, and two teenage stepsons. When she is not advocating for disability rights, body love/size acceptance, performing burlesque, or writing her face off, she is busy ironing her cape and looking for ways to fit more shoes in her closet. She is also the author of the children’s book Meet ClaraBelle Blue, and is currently working on her memoir. You can find Adiba at The Full Nelson.