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| Image of a tall, multiracial Latinx presenting male with black cropped hair, a thin mustache, wearing teal and blue striped polo shirt and black slacks. He is holding an iPad AAC device in his hand. Image posted with permission of the subject. Credit and Copyright Kerima Cevik. |
My son was born in the nation's capital, during the worst snowstorm the DMV had seen in years. We had to try and reach the hospital in a taxi that volunteered to take us when the ambulance, trapped in the snow, could not go further. Everything about his life has been no less dramatic.
We first met an idealistic nutritionist on the grueling December when he was given the gift of diagnoses. Grueling because the diagnoses were so grim they required we get repeated followup appointments at the Kennedy Krieger Institute to confirm the fears of the pediatric neurologist. Gift, because to define one's disabilities means to understand them. Some can never put a label, prognosis, or plan to theirs.
Our idealistic nutritionist was in her first month on the job, and as she read our son's chart and smiled at him and us, she gently asked if we could afford organic food for him. She was positive, encouraging. Kind. So it was a shock to believe that when we followed up with her after she became the head of her team and our son was not quite twelve, years of working with nonspeaking autistic youth had turned her into another person. She was rude, short, bitter. "I'm a department head, you need to follow up with someone else." "He's entering puberty. I suggest you get a lock for your refrigerator and hide the kitchen knives." The look of anger and horror on our faces was so apparent, and my husband's sharp angry retort was so loud in the suddenly silent room that she seemed to wake from a jaded dream. She immediately apologized. "Of course I didn't mean to imply your son was violent." Our son was right there. She said these things and he was looking right at her! Why did my husband have to remind her of that? What had happened to this woman after a decade of supposedly providing nutritional services for nonspeaking autistic children?
Our son is seventeen. We have neither considered nor had the need to bolt the refrigerator. Our knives are not locked away. His absolute favorite thing is baking, and he loves cooking and food culture in general. He has grown into a happy, loving young man. The nutritionist, like so many other professionals who were supposed to be there to help our son but came with attitudes that prejudiced the quality of care he received, were wrong.
He progressed when they said he could not. He overcame when they refused him the AAC equipment he needed to communicate and the supports he needed to succeed in a traditional classroom. They failed him. And after years of trying to fight for him, I felt like a failure each time I saw other nonspeaking autistic children gaining resources I never knew existed. Until I realized that what made him different was me. All those children, all of them, were not the children of Black women.
It was an awful moment when this all hit me. My son was having a dermatitis followup and his father was able to take time out from work to come with me to his pediatric clinic. The doctor who had seen him when my daughter and I brought him initially had been rude, dismissive, victim-blaming. When he saw my husband and son he seemed not to recognize me. He was polite, kind, caring. He rechecked his initial findings. He checked our son's bloodwork and gave us a private exam room while doing so. My daughter and I were livid by the end of the visit. It turns out he believed my husband was embassy personnel. When I was just a Black woman with Hispanic looking offspring, my disabled son was a waste of his time and training. That made me realize that my son pays the Black tax for racism directed at me the way bartenders paid the health cost for second-hand smoke.
We realized that we could not overcome disparities in professional services biased by systemic racism. Our son's additional burden of having to overcome the obstacles placed in his path by systemic ableism because he is not an autistic who has verbal speech and he also carries and ID/DD label was so unfair it nearly crushed me. But I am very lucky. I have Mu for a son.
Mustafa is an incredibly kind, loving, sweet son. So much so that I cannot remain depressed about our chances of surviving in a world where so much disparity and hatred is directed at us. He hugs us and engages us and plays endless sweet, harmless pranks on me. He seems to know when I feel defeated and always comes and sits awhile with me, trying to cheer me up. He is the most hopeful person I've known. It makes me keep going.
We worried about his weight because we were lectured endlessly about the problems he would have. He was born heavier than his premie peers. But he has, for the most part, learned to control his own eating. We were told he just was incapable of so much. All untrue. It makes me wonder how many families were literally shoved into clinically depressive states by well-intentioned professionals trying to be "realistic" about other people's disabled children.
What I wish for as we enter this new decade is for someone to look at my son and say he will be alright. Not that he'll survive, but that he will thrive. He deserves to thrive as much as any other nonspeaking autistic transitioning teen. Further, he deserves the chance to thrive as much as anyone his age. I haven't given up hope that I will live to see that happen.
