Autism is a developmental disorder that impairs your ability to communicate and interact with other people. Having autism does not mean you are ill or diseased; it simply means your brain works in a different way from other people’s brains. According to the Centers for Disease Control and Prevention (CDC), 3% of Black children have autism compared with about 2% of white children. The stats indicate that many Black families are struggling with the condition. In this “Hero Story” and as part of our Autism Awareness Month, we will share the story of Vernice Gonzalez, a resilient single mother who has an autistic 19-year-old son. Yes, she is our HERO! In her exclusive chat with the Elevate Black Health team, Vernice bares her heart, opening up how she manages her son’s condition, what keeps her going, and what everyday people facing similar challenges should do to weather the storm.
EBH: Please tell us about yourself and your son.
VERNICE: I am a single mother to a now 19-year-old son, Henry Epps. He is a Jr. More like the 4th! I wanted to give him a name that when he goes to apply for a job he wouldn’t have any issues like his mother with getting a job. His father is not in his life because he chose to not be there. Three months after my son was born, his Dad decided he wanted to leave. We had just gotten an apartment with housing and I wasn’t working. I wanted 6 months to bond with my child. But I couldn’t because I had to go and find work. Did I have heartbreak? Yes. But also postpartum depression. Imagine trying to keep your life together and handle a newborn. I was in a situation to keep it together because it wasn’t the child’s fault his parents couldn’t stay together! Anyway, taking Henry to the doctor seemed normal for the most part. Once he turned 1 and close to 2 is when things were getting strange because doctors would make suggestions as to what they thought about my son’s head shape but wouldn’t come clean or honest with me. The pediatrician suggested that Henry be taken to a neurologist to check his brain but they never explained why. I went to a preliminary and then nothing more. I kept hearing “Oh he’s ok” and “he’s just got a big head”. I had people who weren’t doctors say there was something wrong because by the tender age we are discussing he should have been making some sort of sound or verbalizing/vocalizing. But nothing!
EBH: When and how did you find out that your son has autism?
VERNICE: How I found out Henry was stricken with autism when we moved from New York to Florida. Henry was at this time 2 years old and still non-verbal. He would be taken to daycare. I did my due diligence and took him to the doctors down here and that is where I was chewed out by the doctor. She was almost beside herself, because the whole time I was in New York dealing with the pediatricians, how come they didn’t spot it the way that this doctor did and we were only in the office, no more than five minutes? The doctor was explaining to me the signs of what I should be looking for or expecting. Even the daycare was some sort of help. All of this was found out by late 2007 and during 2008.
EBH: What are some unique challenges you have overcome in the course of taking care your son as he grew? What’s the most challenging aspect of them all?
VERNICE: Every day is a unique challenge! Honestly, it seemed it was the language because he was nonverbal for the first 5-6 years where it would be just pointing and screaming for just about everything. I’d have to speak for him, like how back in the day when older people would be for their children and sometimes would cover their heads and speak over them. Thinking back that was the best though because when Henry would want something or even if he just was scratching his face, he would use his middle finger. That was something he often did and still does and he is 19. What is still challenging even now is the fact that he is intelligent in so many ways; But with autism, the way that he has to learn or how it comes out is altogether different. His comprehension level is that of an 8- or 9-year-old. There are days when he is on top and most days when it’s elementary Henry.
EBH: Do you sometimes fear that he may harm himself if left unattended? If so, how do you manage the situation?
VERNICE: Yes and no. I say that because we haven’t tested him out on the theory yet. He has always told me to go away when he’s bothered or he’s “smelling his piss”. Yet, as much as I would like to test that theory, I also can see him getting into the things he’s not supposed to do. He’ll mind himself on certain things. But to put it plainly, he cannot be trusted blindly! To answer your question more appropriately, he will not harm himself but he will get into things that do not suit himself or the household.
EBH: What does your son do now (occupation)? If he is in school, what kind of school does he attend?
VERNICE: Henry is still in high school and will still be there until he is transitioned out. This means he will be assisted with daily life and going into mainstream with the rest of us adults who work. That will be until he is 21 or 22. His diploma will be deferred until then. At this rate, he can benefit from still attending as he has the mentality of half his age. Henry is in a public school, where he is in an ESE/ASD cluster class where he may have some services and or breaks with general education students. This school is a Cambridge school but this is also a school that was suggested by another teacher. The home school (that the County was going to send him to) was not the place where I wanted him. I was able to use a McKay Scholarship and have Henry reassigned to this particular school.
EBH: Talk us into your son’s daily activities. What can he do for himself unaided? What are some creative outlets he can express himself in?
VERNICE: He gets up anywhere from 4:30-6am, even on the weekends. That’s because he goes to bed at 9:30 pm, no later than 10:30. We had him on a schedule to keep up with school but he now does it of his own accord. He’ll get himself ready for school, which includes showering, dressing, and grooming. Although the grooming and showering are shoddy at best. He has to be given that freedom because he started telling my mother that he saw his ancestors while she was cleaning him “downstairs”. He can cook his food—food that he likes to eat. Sometimes he will want to cook for us and he has learned to cook fried eggs by watching how it’s made on YouTube or some other channel from there as well. Yet we can’t trust him too well because he does some unscrupulous things. Henry can wash dishes, but like any normal red-blooded child, he will rebel when asked to do them. I will get him to at least keep up with each dish he uses and even then that is like pulling teeth. I think sometimes he asks to help at the last minute as a calculated move, to say at least I asked.
Creatively Henry is into electronics and trains. He has this uncanny ability to synchronize his shows from TV to that very show on his phone or tablet. Henry isn’t the sports type. I’ve tried him with Special Olympics. Basketball, two seasons but he didn’t even give it his all or even half his all. I wasn’t going to put him in football. I did have him in Tae Kwon Do as I wanted to have him learn discipline and self-defense. That lasted close to a year. He made it to an orange belt with black stripes, which equals to him being able to start working with weapons. Henry enjoys his two Xboxes (360 and one). Henry is into Minecraft. He likes to build but it revolves around trains and tracks. I think it’s because he likes/ wants to travel. What makes Henry happy is trains and spending money!
EBH: Has your son been discriminated against or bullied by his mates or friends at school or in the neighborhood? If so, how did you manage it?
VERNICE: Yes, he has. From the time that we came down to Florida, I think I was more sensitive then than I am now but that doesn’t mean I will not come out of pocket. Henry, even at 3, 4, or even 5 years old, was exceptionally tall for his age, and trying to go into parks to let him play, you would hear a child say ‘hey stupid,” or “what’s the matter with stupid?”. Instead of me having to educate or even have to argue with someone about their child let me remove mine. Down here in Florida, and this isn’t for everyone but the majority of people are lacking in the empathy and common sense. You cannot correct a child and explain that what they are saying is wrong without a parent being pissed that their child just got checked. Not even the parent wants to be schooled. I now work in an elementary school and the lack of involvement in the children’s lives is tantamount! At Elementary school, there was an instance where I was called because a para/ teacher aide had been accused of manhandling Henry in a way not conducive to herself and her job. I was told that they had to inform the police. Middle School, I was called because Henry and another ASD child made it into a corner in the gym and the other child was trying to force my son on his knees to have Henry perform fellatio on him. So now the question remains even to this day—how in the world does this child get this idea? Yet I know the answer. The issue is why the parent/parents were not on top of this. Even at home, there is my mother and grandmother who keep watch while I’m at work. They have the old school mentality of wanting to sheriff things and give old-fashioned reprimands, instead of understanding him and his thinking. Then sometimes I have to get on him and them because it is a matter of “leave him alone” or “leave me alone” when he knows that he did something wrong and he relishes in their sympathy.
EBH: Based on your experience, what do you think that such children need most and what do you think they don’t need?
VERNICE: What my experience is saying is love and patience! Mind you, I have one of the two. I am building patience because I am short-tempered. You have to have the ability to talk with the child or children on their level or be able to communicate in a manner the person with autism can understand. Change the terminology into something they can get or know. If they like trains or Minecraft like Henry does, use that to get their attention. What I feel they don’t need is being ignored especially if you don’t understand their condition. If you don’t understand autism that’s ok, you just need to understand your child or children. Just watch them and the things they do. Henry cannot stand that I do not have to be at home and know what he is up to. Children with autism need to have the same time and attention as a child without limitations. This comes from both children and adults.
EBH: What’s the biggest misconception about autism?
VERNICE: It is hard to say what the hardest misconception about autism is because coming from the inside, of course, I would have a bias against those who haven’t been exposed in such a way. Plainly put, autism isn’t as hard as it seems. The issue with any disability like autism and Down syndrome, is people hear it and the first thing they do is give their sympathy as though someone died or if it’s the black plague! I work in an elementary school and some teachers work for general education classes when they see teachers and aides working for these classes, they (like the rest of the population) either say, “oh you have my sympathy,” or “ooh I can’t do that,” or they sit and watch the shit show that we have to go through and instead of trying to help and understand the situation, they sit back and watch and laugh. These children, humans, and people are not circus sideshow freaks. They are not meant to be gawked at, to be pointed at. We already don’t understand it as is. We already don’t have patience for ourselves, and pulling from reserves for these poor children that don’t have anyone fighting for them and or making fun of them. These people are much more intelligent than we are and unfortunately, this learning disability has everything jumbled up in their brain and they can’t get it out.
EBH: What kinds of help does your son get now?
VERNICE: The only help that Henry gets is the services from school, such as speech and occupational therapy. These are services that are included with his IEP. Unless you count SSI and the $50 that he still gets for child support. I’m the one who gives him the help that he needs out-of-pocket when I can.
EBH: In all this, what is that one thing that has kept you going?
VERNICE: What has kept me going is knowing that Henry is my light and life source. We fight like cats and dogs sometimes but he also grounds me and teaches me to be a better parent and person. With me now in the education field as a paraprofessional in the ASD field, I can understand quirks that I didn’t understand before. Also, brings some light to those who swore they knew about autism because they have been a teacher for so long.
EBH: Do you think your son’s condition has improved over time? And why? If YES, what (factor) do you think contributed to this improvement?
VERNICE: Henry’s condition has improved somewhat. Again, his thought process is half his age and sometimes less than that. He also has an incontinence issue so, my boy wears diapers. He has been to a psychiatrist/ psychologist to confirm his level of mental capability. He has to go back in another three years to be re-evaluated.
EBH: What advice do you have for parents going through similar challenges as you?
VERNICE: The advice that I have for other parents going through the same thing is don’t be afraid to challenge yourself. Don’t be afraid of your autistic child especially when they don’t get their way. Learn them, and pay attention to them, in every aspect. Challenge them, but also know when to fall back and let them be them. Know when to ignore them for their sake and your sanity. Challenge the status quo, challenge the system. Ask questions even if they don’t make sense to you. Keep asking until you get your answer until it is law in your brain so when someone who doesn’t know your story and or the law tries and tells you differently, you can stand on all 10 toes and fingers and say proudly what you know to be true and what works. Also, don’t be scared to try new foods on your child not because people say don’t let them eat this because it doesn’t go well. Know what to give and what not to give because knowing will help you figure out what triggers your child or children in a good way or bad way. Get him or her on a schedule because even though they fight out, they like it. They need it. If you do better with electronics with them do educational programs. Leapfrog and or something of the sort. Rock with them until they kick you out and complain that you’re doing too much. Until they want privacy. You can still have a life even with autism but please understand that you need to get them together before you worry about what is going on with your social life. Once they are slightly independent, then you have a reprieve, even if it’s to fart in the corner of the shower.
EBH: What are your goals for your son as he ages?
VERNICE: What I would like for Henry is to be successful enough that he can go to work and I don’t have to worry. That he can earn a paycheck and not be short-changed. I want him to have friends where he can have a social life and they are going to look out for him like the family that they cherish and will go to bat for. Henry can stay home for as long as he chooses and have a family and a wife or girlfriend. I want Henry to be that train conductor or work in the train yard because his dream is to work with trains as trains are his love language.
From the foregoing, raising an autistic child can be heartrending, draining and psychologically overwhelming, and it gets worse each time you remember that they are unlikely to grow out of it. Despite all this, Vernice still sees the light at the end of the tunnel, believing her autistic son, Henry, will be successful at what he loves most like every other child out there. Much as the journey hasn’t been a walk in the park, she wouldn’t let up because that’s not an option for her! Interestingly, she is a single mother and has learned to deal with the situation head-on and unaided too! Vernice’s Hero Story inspires all of us at Elevate Black Health. Hence, we shared it with you believing you will learn a thing or two from this strong, independent Black woman!
For further reading:
Https://www.nhs.uk/conditions/autism/autism-and-everyday-life/help-for-day-to-day-life/
Https://www.webmd.com/brain/autism/parenting-child-with-autism
