In this episode, Inna reflects on what happens when a neurodivergent person’s support system goes away and society fails them.

Transcript

Our Loved Ones are Jordan Neely

 So, I’m sitting here by the lake, and it’s so peaceful and beautiful. The water is really clear and I could see the fish and the turtles, and I wanted to talk about all the good things that are going on in my life because there’s been something on my mind and I wasn’t quite sure how to say it. And, there’s a lot of controversy over it. And this is the issue of the man in New York City who was choked by an army veteran on the train and the man died and now the Army veteran is being charged in court. I’m actually not here to talk about what happened very much and whether or not what happened is right or wrong and, and who failed and who didn’t.

What I’m here to talk about is how, this is the playing out of a nightmare that so many of us parents have for kids who are special needs. We have family members who are very identical profile to that man, and I sometimes feel that there but the grace go I and my family. That, right now, we’re not a position that, that will happen to that family member, but it is really scary because from my understanding is the person that got killed, he had a very good support system when he was younger, but they died tragically. They were murdered and the rest of his family just couldn’t handle him and he was just set adrift and he was just lost in the system. And he was spiraling and nobody was there to help. My understanding is when that man got on the train, he said he was hungry, he was thirsty, and he wanted to go to jail, and things just escalated. And the problem is I could totally see somebody with his profile of autism, schizophrenia, being hungry and thirsty, and, and just making that bodily discomfort, just spin him out of control.

Lost in the System

And it really scares me. Not that, that we in society, Just don’t have a solution for people who are lost in the system, who have medical issues, who have emotional issues, who have cognitive issues, that when their family member dies, who takes care of ’em, they’re just thrown out like garbage into the street and forced to fend for themselves, which they’re not able to do and nobody is there to help them.

And in the end, What happens is, is the terrible consequence of what happened, and this is everybody’s worst nightmare as a parent of a family member who’s experiencing such issues.

Support Systems and Independence

So this is where I get to the good part of my day. I think a lot about what would be necessary and what do we do when my family member is old and I am no longer there to support him, and my husband is no longer there to support him, and our immediate family is no longer there to support him.

And I’m hoping that the things we’re doing now is putting that support system in place. And there are days that were successful, like today, today was a very good day in terms of, of reaching independence and adulthood. But we are going to be coming to a point where as family members get older or as they get older and they decline, there’s a certain amount of uncertain quest for independence.

And the question becomes how do you manage that independence? With the fact that they need support and I don’t know what the answer is, and in our family, we’re kind of punting it down the road, but I’m just not sure where that’s gonna end up. On a day like today, I wanna think that there’s gonna be a good outcome.

Sleeping Better at Night

But there’s always that little bit in my mind that says, oh my gosh, what if that scenario, there’s so many scenarios out there of people with disabilities where bad things happen to them because there was a lack of understanding, you know, fill in the blanks of what there was a lack of. So one of the things that we wanna do in the foundation is just empower both those individuals and also their care teams to help them.

That, the people can sleep better at nights and people can feel like they are living their full lives and God forbid they need some help, it’s there.