My mom and society have taught me that it is rude to offer advice when no one asks for it. But Black folks aren’t talking about disabilities with each other, and that silence is negatively affecting our children. And, while many of us in the Black community are too ashamed and afraid to talk openly about disabilities, our children with disabilities are losing out on opportunities for early intervention services that could change their lives.
We have to talk. I am going to be “all up in your business” and offer unsolicited advice to parents of children with disabilities. I am being a “Nosy Nelly” because I have to.
AS BLACK PARENTS OF CHILDREN WITH DISABILITIES, WE HAVE TO MOVE QUICKLY THROUGH OUR GRIEF TO GET OUR CHILDREN WHAT THEY NEED.The funds for all services for children with disabilities are just a small slice of the pie when it comes to state and federal budgets. So as Black parents of children with disabilities, we have to move quickly through our grief to get our children what they need. We have to come out knowledgeable and ready to fight for our piece of the pie.
TO FIGHT FOR OUR KIDS, WE NEED TO SAY GOODBYE TO STEREOTYPES
Disabilities are not bad; disabilities are differences. Before eyeglasses were invented, many of us would have been legally blind and thus disabled. I know I would have been. If I drive without my glasses, I am going to jail—because I can’t see a thing without my glasses!
Other kinds of disabilities, even the ones we think are most severe, can work the same way as glasses. There are many available tools like glasses, speech therapy starting at age 2 for example, for each disability. Technology is getting us even closer by creating new tools, from Braille smartphones to stair-climbing wheelchairs.
DISABILITIES ARE NOTHING TO FEAR OR BE ASHAMED OF, AND WE CANLEARN NEW LANGUAGE TO REFLECT OUR NEW ATTITUDES.Disabilities are nothing to fear or be ashamed of, and we can learn new language to reflect our new attitudes. It’s way past time to dump words like “retarded” or “handicapped.” All the “short bus” jokes and “slow-talking jokes” from comedians like Ricky Smiley have fostered an image of people with disabilities that is not only hurtful, it’s stigmatizing and wrong. Many people with physical and mental disabilities live full, happy, self-sufficient, lives like everyone else. However, in order to live independent lives, they need some supports and accommodations to help them.
PRAYER IS NOT A SUBSTITUTE FOR SERVICES FOR CHILDREN WITH DISABILITIES.And we have to address the elephant in the room. Black people, prayer is not a substitute for services for children with disabilities. Prayer is important and helpful for the spirit. I pray over my children daily. However, prayer alone is no substitute for experts who can help parents understand their child and provide therapies and tools to meet their needs. I pray for service providers and knowledge to navigate the crazy system.
When you are dealing with developmental issues in young children, don’t listen to your momma, your pastor or even your best friend. Listen to doctors and specialists, because disabilities are health conditions that require experts.
Health conditions can be managed and quality of life can be improved using treatments and practices that have been tested and proven effective. When in doubt, use the medical rule: if you were having health problems, would you let the person offering advice serve as your medical doctor? If not, they are not the ones to take advice from regarding disabilities either.
KNOW HOW KIDS GROW
Knowing how children really develop and grow is essential to spotting problems and supporting our children when they need help. Remember the Katt Williams comedy special, where he joked to the lady in the store yelling at her child for wanting candy by saying, “your child is 2, they are supposed to want candy? That joke is for all of us. As a community, we need to learn about developmental markers. We need to learn what is behaviorally appropriate at certain ages. Kids aren’t supposed to sit still and quiet at age 2, and asking them to do so is harmful.
Also, if your child is 3 years old and cannot speak in short sentences, that is a sign of a speech delay that needs early intervention. Speech therapy is scientifically based and it works! If your child needed glasses, you wouldn’t be too ashamed to take them to the eye doctor. You also wouldn’t wait to see if they grew out of not seeing. Don’t do that with speech either. The time from 3-6 years of age is magic. Early interventioncan turn everything around.
Next, stop calling kids bad! I struggle with this one, a lot, because I have a “busy, not bad” child. But this idea of kids being “good” or “bad” is hurting our children and us. All kids exist on a behavior spectrum. For kids with disabilities, that may show up looking like they are “bad” when in reality they have a disability. Sometimes “bad” is actually “tired,” or the place is too noisy.
When my daughter starts screaming in the mall, I know she is having a sensory overload. I don’t yell. I try and find a quiet space, or I cover her ears and tell her to close her eyes, and I hum and rock her until she calms down. I’ve had Black folks looking and making comments that she needs a spanking. She doesn’t, nor do other children with disabilities. They need to be comforted. Children with special needs are not giving a hard time, they are having a hard time.
WE BLACK PARENTS MUST BE WARRIORS FOR OUR CHILDREN
If your child does get a diagnosis and needs services, you will have a lot to learn. You will have to get ready to fight. And you will need to take good care of yourself so you can fight for your child.
WHEN IT COMES TO ADVOCATING FOR CHILDREN AT SCHOOL, WE DON’T HAVE THE LUXURY OF “RESPECTABILITY POLITICS” OR USING OUR “WHITE VOICES AND ATTITUDES.”If your child has an Individualized Education Plan (IEP), get an advocate or a lawyer right away. This process is brutal. School and district staff are rude and disrespectful to the richest and Whitest folks, so imagine how we get treated. When it comes to advocating for children at school, we don’t have the luxury of “respectability politics” or using our “White voices and attitudes.” This is the time to go full momma bear and fight the school for the tools your child needs!
And, we can’t do it alone. We need an army behind us! We need support groups. Having a special needs child is exhausting in a different way. We need to be with people who understand because they have lived this struggle too. Online groups are great for this! There are groups for Black parents of children with autism, children with Down syndrome and more. If there isn’t one that fits your specific situation, then try to start one in your community.
One of my personal heroes is Debra Vines. After her son was diagnosed with autism she realized the lack of support and information in our majority Black community. So she and her husband started The Answer, Inc., which has become a leader in educating Illinois families about autism.
IN ORDER TO FIGHT FOR THE RIGHT SERVICES FOR YOUR CHILD, YOU NEED TO BE MENTALLY AND PHYSICALLY STRONG ENOUGH TO HELP THEM IN THIS LIFELONG BATTLE.Lastly, having a child with disabilities is hard for both the child and the parents. I highly recommend that you get therapy for yourself. In order to fight for the right services for your child, you need to be mentally and physically strong enough to help them in this lifelong battle. This means you have to take care of your own mental health, too.
Fighting for your child’s rights to special education is probably the toughest of all school fighting. You need to be at your mental, physical and emotional best to even have a chance of winning what is legally owed to your child.
It is imperative that Black parents fight for services for our disabled children. Seriously—rich White people have the money, resources, connections and knowledge to put up a fight for their children, and yet, many of their children still aren’t getting the right services. For us, it is doubly difficult to get services. That’s why we have to start services as early as possible. Early detection and intervention is crucial to successful outcomes. If you are a parent of a disabled child, start your service now! I’ll be praying that you find all the resources you need for your child to live a quality, happy life with accessible education.