COMMENTARY: ‘I have all the weapons I need’ – taking action to heal your autistic child
In honor of National Autism Awareness Month, Sheletta shares her experience as the mother of three children on the autism spectrum.
My son Brandon, after he was diagnosed as autistic, had an appointment with a speech pathologist named Becky at a local children’s hospital. They say it was random and that the computer picked her, but I know now it was divine intervention.
I insisted that my momma tag along for the evaluation since she didn’t believe there was anything wrong with my child and I was just making it all up to get attention for myself. “You won’t trust your daughter,” I chided her, “so I’m gon’ take you with me and let these White folks with some letters behind their names tell you that Brandon has autism. Maybe you’ll listen to them.”
She rolled her eyes and pursed her lips. I ain’t care. She was gon’ go with me to every appointment and every evaluation until she was on board with Brandon’s recovery plan.
When Becky came out to the lobby of the speech center to receive us, she had the biggest smile and the warmest spirit. I knew at that moment that she would be a blessing to my family.
While she evaluated Brandon, she insisted my mother and I stay in the room with her. Unlike other evaluators before her, she wanted to include us in what she was doing.
My ol’ nay-saying momma sat there with her arms folded and her legs crossed looking like the angry Black church usher that she is. Becky didn’t let Momma’s stank attitude intimidate her. She kept on testing. Asking questions. Running trials.
When Becky was done with everything, I could see my momma’s disposition had changed. Suddenly Momma saw what I saw – that my baby, her favorite grandson, had autism and would need intense help to get better.
Becky, being led by the Spirit, addressed my momma right away: “Mrs. Handy,” she assured her, “with the right therapy your grandson can be a normal kid, but it’s going to take a lot of work. But the hardest part is done. You’re no longer in denial.”
My momma couldn’t even breathe she was crying so hard…
Becky told her plainly, “You should be proud of your daughter for bringing little Brandon in as soon as she noticed something was wrong. That doesn’t typically happen with Black parents. Now, my White parents, I’ve had them bring their kids to be evaluated as young as six months old. That means they get treatment and services for their special needs child right away. Then, by the time the little kiddo heads to pre-school, they’ve had three years of therapy, and by then they’ve caught up to their friends.”
“But why don’t Black parents come in sooner?” my momma had the audacity to ask.
“Cause they’re in denial, just like you,” I fussed. “Instead of seeing that something is wrong with our kids and trying to fix it right away, we turn a blind eye.”
“And by the time my Black families start looking for help,” Becky added, “the child is five or six years old and they haven’t had any therapy, they can’t talk, and they’re acting out.”
I put another two-cents in: “Because they can’t talk, they’re in school frustrated and fighting. Now we run to a therapist looking for a miracle when we done missed out on three or four years of good therapy.”
“And early intervention is the key,” Becky reminded us. “The sooner your child gets help, the better the outcome.”
“So what’s next?” I asked Becky. “How do I get my baby to a point where autism is in his past and college and a career are in his future?”
I had been so frustrated prior to meeting Becky. Nobody helped me. Nobody told me what I needed to do. Not one doctor, therapist or specialist threw me a life-line.
Becky was different. She walked over to her desk, got a pencil, some paper and a clipboard that she handed to me and directed, “Write down what I’m about to tell you. This is what you need to do for Brandon.”
With that she laid out the road map for my son’s successful transition from special education to accelerated learner:
- Get him into a quality private pre-school a few days per week. Keep him out of special education classes in the public school if you can. Make sure the pre-school teachers are educated and have degrees.
- When he does go to elementary school, make sure you have a plan to mainstream him into a regular classroom as quickly as he’s ready for it.
- Have him see a good private speech therapist. The public schools will provide some special services like speech and occupational therapy, but if you want the best care, you’re going to have to pay for it.
- Find an occupational and physical therapist Brandon can visit once weekly so he can work on his fine and gross motor skills.
- Get under the care of a developmental pediatrician and a developmental psychologist for yearly evaluations and medications that may be helpful to curb some of the typical autistic behaviors.
- And finally, and most importantly, get him signed up for applied behavioral analysis (ABA) therapy either at a center or in the home. This method of therapy has been proven the most effective at helping children with autism.
I could have kissed that White lady on the mouth. She had just laid out a solid foundation to help heal my child. But after looking over my notes, I asked, “How, Ms. Becky, can I afford this? Private school. Three or four different kinds of therapy. Medication from specialists who may or may not take my insurance—”
She cut me off: “There are scholarships and grants available that will give you the money to pay for everything you need for your child. All you have to do is go online to find them, then apply.”
I left her office with a mission, determined to find help for my baby.
The speech therapist she recommended cost a whopping $800 a month (they so good, honey, they don’t even take insurance; it’s a straight cash payment like the weed man). It didn’t come out of my pocket, though, because I applied for a United Health Care Foundation Grant that gave me $5,000 to cover the cost.
The tab for that applied behavior therapy for Brandon was $900 per month, and that was after our medical coverage kicked in. It didn’t matter because I found the C.A.D.E. scholarship [Children with Autism Deserve Education, a Minnesota nonprofit] and it paid for an entire year.
I continued to find more and more resources. Before it was all over, I raised nearly $50,000 to pay for all the good therapy Brandon needed. I got so good at finding money to pay for stuff, I started holding free workshops for parents who have special needs kids to teach them how to find grant money and scholarships for their children.
And guess what? All the White churches let me in, and they were always full of folks who were looking for financial assistance. Our Black churches would not let me in. Well, that’s not fair to say all of them rejected me; I’m still waiting on the deacon board from a few of them to get back with me.
And remember, I’m doing this for free!
Now, after three years of quality therapy like them White folks be getting, my child is in a regular kindergarten classroom. He’s reading, doing math, giving me eye contact, talking and talking back.
Yes, honey, he is a typical five-year-old boy. Today, right now, you can’t tell he had been diagnosed with autism.
God is good. I’m glad He chose me to be this bright little boy’s mommy. Brandon has hope and a bright future, and I’m thankful to Ms. Becky for giving me the roadmap to get there.
I was home free with Brandon’s recovery – or so I thought. I must have done too good a job, because the Lord decided to choose me two more times. My daughter Cameron and my son Daniel have also been diagnosed with autism spectrum disorders.
I’m rolling up my sleeves and getting ready to do battle. This time I have all the weapons I need. My family motto: We want our kids healed, not helped!
Sheletta has provided a list of centers in the Twin Cities that provide excellent care to children who have been diagnosed with autism spectrum disorders. In addition, she’s provided links to all the scholarships and grants that are available to pay for therapy and medication. See below for details.