SPECTRUM SPOTLIGHT: featuring Deon

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 Deon… a wonderful and independent young man, living with Down Syndrome. And, in this episode of Spectrum Spotlight, Deon’s mom - Mrs Kaneasha Nutall - reminds us that beyond the patience needed for the long journey, we must be willing to get the help that we need, especially connecting to someone who understands what we are going thru, that can serve as a constant reminder that we are not alone.

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

Well first I have to start off with when I had Dion. I was a teenage mom when I gave birth and really didn't know anything about Down Syndrome cause i had never heard of it before. So once we found out that there was a possibility that he would have Down Syndrome, I immediately went and did my research and found out, you know, what it was, and what I needed to do, as a parent, to help him.

Then, once he was born, we immediately got him into school intervention, which he started at six months… and that was basically physical therapy because his muscle tones were very low. But getting him into school at such an early age really helped us with our understanding and helped us develop some much needed patience - because we were learning more and more, that it will be a long journey.

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

Well, normally when you have a child, you have your parents, your grandparents, your aunts and uncles, or there is someone out there that can help you raise your child, and tell you what to do, and what not to do. But when you come with a child with a special need, it's a whole different arena because you don't have to so many people there that's able to help you and walk you through this. My mom and my four sisters were all very supportive with Deon however, they didn't know anything about a child with a disability. So, starting him in school, at six weeks, was a great deal for me as far as helping me out, because they were able to let me know what was going on.

I also had Deon at Rush Presbyterian… and they provided me with a “supportive parent” by the name of Anita Johnson. Her son was like 3 years older than Dion, and so if I had a situation that happened with Deon, I could call her because her son had already been through it. So she was able to help me out and walk me through a lot, in the early stages of our journey.

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

What I've learned throughout this journey is that I do have to loosen the rope a little, to allow him to develop, and that is something that I've admittedly struggled with. So if you would have asked me this maybe five years ago, it would be that Deon lives at home with me for the rest of his life, and I'll just let him do as he pleased. But, the more and more independent I see him becoming… I AM seeing him living on his own and and having a job, and working and just being a productive citizen.

ME: What makes you believe that that is possible???

Well first of all, when he was younger he had to have heart surgery, and during that heart surgery, he went into to cardiac arrest for 30 minutes. So after that, they said that there was a possibility that he would be a vegetable… and after that, there was a possibility that he wouldn't ever be able to move his left side… and when he started moving, then they said that he may not be able to walk… then when he started to walk, then they said that he wouldn't be able to communicate… then when he started to communicate, then they said that he would be on medication for the rest of his life.

Now, he had that heart surgery when he was nine months old, and he came off of all of his medication by the age of five. So believing in his tomorrow is as simple as looking back at all that GOD has kept him thru. And as long as I keep praying for him, I believe that God is going to make a way.

Secondly, I see Deon practicing his independence everyday, just little things like I would go in and make his bed, but then the next day, I would walk in and he's made his bed already. So every day, the little things that a lot of people would look over, I see them as another step towards that tomorrow that he wants and i want for him.

The third thing i would add, is that before the pandemic, he was going to a program where they were teaching him job skills, like how to fill out an application… and then they would go and do different volunteer works in the community, like they were cleaning a church or they were stocking food at the food pantry. So they were taking them out there and just teaching them those everyday skills of job readiness.

and lastly, he participates in a sanguine program, where they will take them for the weekend and that gives them a sense of independent living because they have their own rooms and they have to shower and do everything on their own. So, I think those type of things are all getting him ready, you know away from mom, away dad, away from his brothers and sister, and away from home - while still knowing how to take care of himself - with each trip being somewhat of a practice run for all of us.

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

Well, you know, there was some positives and negatives to covid-19. When it first started out, it was pretty positive in the sense that we were all home together. And then, it didn't affect Deon as much as I thought it would, simply because everyone was around. It was like a summer break to him… so that part was okay.

The downfall of it was the fact that he just wanted to hang out with his brothers and play the video game or watch movies. So getting him out to try to exercise or get some movement was almost impossible.

We are grateful to have The Nutall Family as a part of The Answer Inc Family, and would like to thank Mrs Kaneasha for taking the time to sit down with us. We would also like to send a special shout out to Deon who just celebrated his 26th birthday on yesterday, July 21, 2020.

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