SPECTRUM SPOTLIGHT: featuring Jabril

As a part of The Answer Inc’s Commitment to de-stigmatizing society’s opinion of persons with Autism & Other Developmental Differences, our Spectrum Spotlight Series was created to shine a light on exceptional Children and Young Adults everywhere - who, in-spite of obvious limitations, are ever committed to living their best life.

This month we are shining a light on Jabril… a wonderful and intelligent high school senior, living with Autism. And, in this episode of Spectrum Spotlight, Jabril’s mom - Ms Nedra - reminds us that: you have to advocate for your child, regardless of the situation, and regardless of their age, you have to be their first Advocate, and then you have to teach them how to advocate for themselves. That you have to know that autism is not a death sentence, and that every child is different. And, that there will be some struggles, but there will be more victories… and that no matter what, you got to stay steadfast on what you're doing and know that nobody can tell you anything about your child because you already know your child. It's on you to tell them about him not for them to tell you about your child.

ME: Please tell me a little bit about early days of Jabril’s Journey???

Well as it relates to the early days of his journey, we actually found out that he was Autistic or on the Spectrum when he was three years old, which is pretty early on. I just wanted to make sure that he had all the support he needed from me, his dad, and my family… as he was becoming a school-age child. I wanted to make sure that he got all the support he needed while at school but at the same time making sure he wasn't treated any differently because of the diagnosis. So for me, it was just trying to help him understand Autism, but it was hard at a young age, so I just worked with him continuously.

A lot of it however, was social for him, so he wouldn't do a lot of talking. So anytime he wanted something… I actually made him say it instead of just giving it to him. He would point and I would make him repeat what he wanted. If it was juicy would have to say Jews if it was a cookie. He would have to say cookie. So I kind of pushed it on him and refused to allow him to retreat back into just pointing at things because I knew once he started school, you can't just point at things, you got to tell people what you want. So I wanted to make sure that he was supported at home and that he will be supported when he started school as well.

Early on when I got that diagnosis, it was heartbreaking for me because I kind of felt like what did I do to bring this on him? I cried initially after reading the diagnosis, but I got over it. I wallowed for like two hours and then after that, I put on my Superwoman cape and was like, I need to do everything possible to make sure he gets what he deserves and he wasn't going to be treated as one of the special kids. I wanted to make sure he would be independent, and I didn't want anybody to be a crutch for him. I wanted him to do things on his own, you know, because ultimately Independence is what you're striving for with all of your kids whether they are on the Spectrum or not.

ME: What were some of the early challenges and/or victories???

I am blessed to be able to say that challenges were very few because I think that as his parent, I knew once I read that diagnosis, that I had to be his number-one Advocate. Now I'm not a pushy person, but I'm not a person that's just going to take no for an answer either, so I made sure to reach out to every doctor, and every clinician, and I was fortunate to find good care at Illinois Masonic. They have a great team for kids on the Spectrum and we went through, you know, the speech therapist, the occupational therapist, and were able to do everything we needed to go through to see where he was on the Spectrum.

When it comes to victories however, I guess as a parent, when you're trying to teach your children how to tie their shoes or zip their zipper, you know, when they finally get it, that's a win. But, for a long time, I bought him velcro shoes because it was easy. But, I knew he couldn't wear velcro all of his life and I wanted him to learn how to tie his shoes so I bought gym shoes for him to tie and we practice and practiced. I bought a book that shows you how to tie your shoe and he got it and that was a victory.

Additional victories were like when it came to buttoning his shirts, what some people think of as just simple things to do, but for a child on the Spectrum… that's something hard for them to do sometimes, you know coordinating button for button and putting a zippers together. So things like that when he was young, he often came through with flying colors.

Today, I have friends who have kids that are on the Spectrum and they're older and it's still hard for them to tie their shoes. So for us, I'm blessed to say my challenges were very few. But my victories continue every day. I mean, he's 17 now and he's going into his senior year in high school and I'm so very excited.

ME: Talk to me about what you see, when you think about Jabril’s tomorrow???

You know, I'm going to be honest with you buzz… every milestone for him has been scary for me. Children on the spectrum need routine. They need schedules. And when you mess up the schedule, you're just like totally messing up their life.

So Jabril went to a home daycare after he was born, and then he went to preschool because I wanted to prepare him for other children, classroom style learning, and things like that. Then when he went to grammar school from kindergarten through eighth grade - same school. When he got ready to graduate from grammar school, I was a ball of nerves because now he was going to a new environment with new people that I didn't know. I didn't know how he would adapt to it.

But, before he went to the school we had to do a shadow day. I talked to the principal and she took me on a tour of the school. I had a chance to talk to her, and to let her know what my son was like. To let her know that he is different from other kids, and not because he's on the spectrum, but because he's my son. I got a chance to let her staff know how to approach him and how to deal with him, so to speak. I talked to the social workers and all of his teachers that were going to, you know, educate him. And so I just wanted everybody to know, you know, he has an IEP, and that they should read that IEP so that they understand how to deal with him because there are no two children on the Spectrum that are alike.

So his tomorrow, as we approach senior year, I'm getting a lil nervous, you know those jitters again. I’m trying to see how I could get him to go to prom without, you know, forcing him. So my idea to get him to go to prom was to work with his principal and say hey, maybe Jabril can just sit at the table and collects tickets. So that's a way for him to dress up, still go get some pictures, and when he's ready to go he's ready to go.

As far as college is concerned, I have been talking to him about college and you know freshman year. He's like, I don't know about that… but I think he associates college with my nephew’s going away. And one thing I know for sure is “he won't go away.” He doesn't want to do that. And I really don't feel comfortable with sending him away, especially in the times that we're living in now, you know, he is independent, but I will feel more comfortable with him being home. So we're going to be looking to see, you know, what college he could attend and it probably just will be online.

ME: How has The Covid-19 Pandemic affected Jabril’s Journey, if at all???

Well, you know, covid has turned the world upside down and normal went out the door back in March. But for me, I just wanted to keep Jabril safe. He knew, back in March, that the school year was going to end at home, and you have to do this and you have to do that… and so, because of the social aspect of of autism, it didn't bother him at all. He didn't really want to go outside but it didn't bother him because he likes to be by himself, you know, he likes to be in his room.

What was also helpful, was that during the summer, he actually worked a part-time job with One Summer Chicago. It was a virtual, but he had to get up, he had to be on Zoom call every day, a couple times a day. He had to go to a website and do different projects and earn Badges and he got paid - which he was excited about. He says he misses school and he misses his teachers… but I did explain to him that this first semester is going to be e-learning so he won't be going back into the building, and he was okay with that. When he has to do school work, he does it, and when he's not doing to school work, he's either playing video games, watching videos on YouTube, or watching movies, all of which is what he loves to do - so and his world everything is fine. And, as long as everything is fine his world then everything is fine in my world. If he's good, I'm good. Now, if there's a problem with my son, there's a problem with me. But as long as he's happy mama bear is happy.

ME: Tell me about being the mother of a 17 year old black boy in America today???

You know, it's unfortunate that after all of these years and everything you learned in school about Martin Luther King and and Malcolm X and all of our black leaders, you know, that in this day and age it's like we've taken many steps back, you know and it's unfortunate but at the end of the day, I don't want to be fearful in my life. And, I won't be fearful in my life because I pray… and, if you're going to pray don't worry, if you’re going to worry don't pray. But no matter what, always pay attention to what's going on around you. So, you know, I tell my son the same to same thing… you have to pay attention to what's going on around you, because you know, you want people to mean things from their heart, but it's so many people out here that are broken. They're doing things that they shouldn't be doing, you know, but it's unfortunate. You have to watch everybody. You just got to pay attention, but I want to live I want him to live and you know try to live as normal as we can.

I'm trying to stay positive in everything I do and making sure Jabril is always positive as well.

ME: Any closing words of encouragement, insight, perspective, wisdom, etc???

God allowed my path to cross with Debra Vines about 10 years ago, through just knowing somebody else and we were at the same event, and I found out she had an agency that helped and supported parents with children with Autism and she and I just clicked. It was somebody that looked like me, they had a child on the Spectrum so they could understand where I was coming from… and that was so awesome.

What I would say to parents today is:

you have to advocate for your child, regardless of the situation, and regardless of their age. You have to be their first Advocate, and then you have to teach them how to advocate for themselves.

You have to know that autism is not a death sentence, and that every child is different… but when you put one foot in front of the other every day, you got to keep taking those steps on this journey.

You have to know that there will be struggles, but there will be more victories… but no matter what, you got to stay steadfast on what you're doing and know that nobody can tell you anything about your child because you already know your child. It's on you to tell them about him not for them to tell you about your child.

We wish you all the best Jabril, and we encourage you to keep on living your best life… and we hope that others will find themselves inspired to do the same, as we share a bit of your journey with them.