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

• Our Loved Ones are Jordan Neely
• Lost in the System
• Support Systems and Independence
• Sleeping Better at Night

 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.

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.

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.

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.

The post Stimpunks Podcast Episode 3: On Jordan Neely and Support Systems first appeared on Stimpunks Foundation.

In this episode, Inna visits a rocket launch and reflects on learning from failure.

• Navigating Boca Chica
• Hungry Rocketeers
• Up Close to Rockets
• Falling for Rockets
• Heading Home
• Framing Failure
• A Motto of Pushing Boundaries

 So it’s been quite the week. Last Sunday, I decided that I was gonna fulfill a bucket list of mine, and I went to see the Starship on that was gonna take off out of Boca Chica. My other son decided to drive down with me, and we had the most amazing experience. Now, the punchline is I didn’t actually get to see the rocket take off, but it was just such an amazing experience. Plus I learned everything that one needs to do differently because we did it all wrong. So the first thing I learned is that you want to get a hotel in South Padre Island that is within walking distance of Ila Blanca State Park. Because you do not wanna deal with the parking situation there.

We basically got a hotel that was in the north end of South Padre Island, and we got up at four o’clock to get to the park. I think we got in at like five 15, maybe five 20, and we were one of the last cars to park there and we still had to walk probably a good half mile to the jetty, to the rocks. Um, but it was amazing.

Um, it was amazing to see so many people old, new from all walks of life, from, from all types of people just going there to see a rocket. Um, we set up right on the rocks and we got sprayed by the water, and in front of us was the slid up rocket and you could see the stars. It was, it was beautiful. Now, of course, on that particular Monday, the rocket, um, stopped. I think 10 minutes within 10 minutes of liftoff. And then all those thousands of people trudged back in their cars and they were probably a little hangry cause it was breakfast time, they hadn’t eaten. And there was no launch. So about a thousand people tried to find something to eat at South Padre, and that’s the second thing we learned is, uh, you have to bring food with you. You don’t wanna look for a breakfast place on South Padre that’s open at seven and can accommodate you and a thousand other Rocketeer enthusiasts. Um, We actually ended up parking the car back in the parking lot and then walking around looking for food, finally stumbled onto a Denny’s. Um, I think we were probably one of the many, many hundreds of people who were there, and they were brilliant and they served us.

And then, um, we decided to stay a couple of days, and this time we got a wonderful hotel within, um, walking distance because we thought at the time that the launch would be on Wednesday. Um, that’s what it said when we booked the hotel.

So what we did is the next day, We decided to drive out to Boca Chica and I heard that you can have access to the Rockets, but I didn’t realize just how much access you could have. I mean, this thing was right there. And what we did is a little bit outside of the State Beach there’s a great little Stripes gas station with an absolutely amazing taco place and we got lunch. And we went and took out our camping chairs and sat in front of the rocket on the, uh, on its launch pad and just ate lunch.

And it was just the most beautiful view I could ever hope for. I mean, this rocket is absolutely beautiful. Um, the ceramic plating had this beautiful translucent to it. The booster was so proportionate, it was just, I, I fell in love. I fell in love with this rocket. Um, as much as one could fall in love with an inanimate object. And I was so sad because the whole point of this rocket was basically to lift off and, and see how far it could fly, and there was no hope of recovery. And to me, that was so sad that something so beautiful was built. And, and there was just, it was a basically, This beautiful piece of, of junk because that’s what it was gonna turn into.

Um, I couldn’t stay because, um, my family needed me to come home. So the next day on Wednesday, while everybody was driving in to see the rocket, we were driving to come home. And I have to tell you, I’m a little sad about that. It was a little hard for me to get over the fact that I wouldn’t see it in person. But, um, you know, sometimes, You have to put your family first and you have to count those wins.

One thing I did realize is that I’m gonna come again and I already told my family that I am a not coming home when I go next time until I see that rocket fly. Um, I did see it on YouTube like everybody else, and I have to say I cried and I, I was so excited that it cleared the platform and I know people said, well, you know, the rocket flew for a few hours and then it exploded and, and it didn’t do what it was supposed to do. But no, that mission was a success because it cleared the, the tower. And it was really interesting to me how SpaceX framed everything. They framed, they framed the aborted launch as something that was positive because they learned from it. And they said, you know, we don’t know what’s gonna happen with this rocket when it flies, but you know, we’re, we are considering a success just to have gotten here.

And I thought that was like the best framing possible, that they’re gonna do something, they’re gonna put it, their whole heart’s behind it, and they’re gonna make it go, and whatever information they get out of it is a successful thing. They’re not gonna be constrained by the naysayers and the boundaries. They’re just gonna go and see how far they can go. And how far they can reach. And they actually probably, even though the rocket, didn’t do what it was supposed to do, they, they exceeded their expectations. And that to me was amazing.

And I think that is something that I want to let more people be aware of and, and kind of live our motto and make that into our motto because I think it’s so important that people just reach outside their comfort zones and do things that they didn’t know they could do and, and not count the fact that whether you do it or not success, but count the incremental steps. The fact that you took the risk, the fact that you took the chance, the fact that you learned something even though you weren’t successful. If those items could be considered successful, then that is a great way for, for people to push boundaries.

So, um, I, I’m really sad that that rocket is no more, and I’m really, really excited to go to see the next one. And I am going to use that motto of pushing boundaries and, and striving and, and having failure be okay because it’s not really failure, but it’s just a way of seeing how far we can push ourselves.

I think that’s really important to Stimpunks because that’s what we’re about. We’re not looking for the perfectly perfect outcome. We’re kind of looking for the, for the messy boundary that gets us a little bit closer to where we wanna end up, and it’s about the journey.

All right, well, it’s late and I’m going to bed, so good night now.

The post Stimpunks Podcast Episode 2: Learning from Rockets first appeared on Stimpunks Foundation.

Stimpunks cofounder Inna is the motive force behind our efforts to gain inclusion into our systems and institutions. In this episode, she talks about the logistics of inclusion, including:

• Respecting Privacy
• IEPs and Educational Inclusion
• Paperwork
• Extracurricular Activities
• Faux Inclusion
• Driving
• Interviews and Employment
• Why We Started Stimpunks

 It’s five 30 in the morning, no, I’m sorry, five 18 in the morning, and I am the only one in the house awake, so I thought it would be the perfect time to start my first podcast, which is basically Inna dumping her brain. I’ve always wanted to make a podcast or write a whole bunch of essays, but I never did that, because I would probably be writing about what it’s like to raise a child who has medical needs and also autism. And my son is intensely private, so I don’t wanna share his story. That is his story to tell or to keep private, and I’ve. I’ve never known the right way to separate my story from his story because so much of what I wanna talk about revolves around the dynamics of the family and the dynamics of our interactions and, and it involves him.

So I’m gonna try to talk about the things that are related to me and me specifically, without telling people and keep about him and keeping his privacy. I think the thing that I wanna start off with the extra number of steps that are required to do anything when you have somebody who needs special assistance.

For example, let’s talk about going to school. If you want your kid to go to school and they’re neurotypical, and they don’t have any medical challenge, well, you go and you enroll ’em in school and you sign up all the paperwork and you guys go and pick out your lunchbox, and you go on the first day of school, and you have that kiss and cry moment, and your kid goes in the door and you go and you have coffee with your friends or you go have coffee with yourself and you cry into your coffee about the next step in life.

If you have a kid who needs support, you start going to school or thinking about school when they’re three years old. And at that point, your child goes through numerous, numerous evaluations. And then you go in a room where you sit out one side and people sit on the other side and they tell you all the things that are wrong with your child, who, by the way, is perfect in your eyes, so you don’t know what the hell they’re talking about.

And then you have paperwork and you fill out more paperwork on a three year old than most people fill out during their college career in college applications. And you talk about things like placements and this and that. And before that you have to listen to all the podcasts and read all the books and learn about all the laws. And sometimes the meetings are contentious. So you go hire a lawyer just to have your three year old start school. And not only that, that wonderful adventure happens every single year. Now, I have to tell you that I’ve done a few of these IEPs in my lifetime, and it’s not, the people that I worked with were terrible. Everybody I worked with wanted to do the right thing, but it’s the whole process of it. It’s the fact that you just can’t go and go to school. You have to go through this intense, amazing process.

And then they’re the extracurricular activities. When you have a child who needs support, you just can’t join an activity. You have to find an activity that accepts them. Now, in my family, we’re always big on inclusion, and we have been very successful in finding activities that my son can join locally, and they have done a great job at accommodating him. And helping him, and I’m eternally thankful to all the people who took the chance, but I have to tell you, sometimes they’re the people who don’t allow your child to join.

And I have a pile of emails that I keep in this box. It’s a mental box I have. It’s a checklist of people and these are all the people who tell everybody about how inclusive they are and how wonderful they are. And they, how support the people with disabilities until you try to join their class. And then it’s like, Well, what does that mean for me? Well, it doesn’t make me comfortable. It probably won’t make the kids comfortable and the parents, they’re paying for this and the parents would want their child to participate with somebody who can basically hold them back or require extra needs

That box. I never try to pull out, but I have to tell you, when you have that interaction, each interaction that you have as a parent with somebody like that, it just takes a little bit out of you. Um, the way I got through it is I remember all the wonderful people and they’ve been more wonderful people than asshats by far, who have done whatever was necessary to help both of my kids have wonderful, wonderful activities.

And then they get older and they decide to wanna know how to drive. Now when you have a child that just doesn’t have needs and wants to drive, well, you know, you go, you study for the test, you take the test, you go to dmv, you present all your paperwork, you get, you know, a permit. Off you go. Six months, you get a license. Off you go. If you have a disability, you think about whether or not your kiddo could actually drive, and you have long discussions with, I don’t know, the therapist, the doctors, this and that. You get to ask for permission and talk to people about, is this possible?

The first person that you have to go to is the medical professionals and the support team and not the actual kiddo. Then you have to figure out how do they drive, how do they actually take the test? What medical documents do they have to bring to the. How will they actually take the test online in person? How is driving school gonna work for them? And the scariest thing of all is what happens if they wanna drive, but it just won’t work out. How are you gonna deal with that disappointment?

And then there’s employment. My kiddo is now old enough to get a job. And applying for his first job was very eye-opening. Now, I wanna say that he’s employed by a fabulous, fabulous company, who went out of their way to support him in the hiring process and in the training process, so I have nothing but kudos to say to the people who hired him. I also wanna thank all the people along the way who helped him. Everybody he worked with to get himself ready for the job and the interview, they have been absolutely amazing.

But the extra steps that we had to jump through, because you’ve gotta understand that when most companies get people with disabilities, they come through an agency. Most people with disabilities who are teenagers and maybe even young people, just don’t walk in the door. And if they walk in the door, the systems aren’t handled to have them get jobs easily. The process does not assume that maybe they have problems recording things or they have problems with echolalia and they repeat things. Or when they do training online, they might not be able to read and write very well. For example, at home we use text to speech and speech to text, but the computers at work don’t have that. Um, that there’s problems navigating around the screen in these things are not thought of. The people who design these systems think that the person they’re designing these systems for are themselves. They don’t think the people they’re designing their systems for have differences in abilities and capabilities and understanding and attention. You name it, they just don’t think about that.

Now, as I talk about all these adventures in my life, People who are advocates will put out words like universal design, principles, and other things that are out there to make it easier for people to go through school, to get jobs, to get a license. There are tools that exist there for that, and I can cover them and talk about them at length in a later podcast, but I wanna explain to you all now is that all of this takes a toll and even if the end result is beautiful and your family and the kiddos and your family thrive, and they do thrive, it makes me do that much more planning. Everything is an exercise in strategy and execution. And that takes time and energy and emotional energy and physical energy and lack of sleep, which is why I’m still talking to you at 5:44 the day before Easter, when I have people coming and a big meal that I’m gonna have to put out.

So this is why I started Stimpunks, because I wanna make it easier for other people. I want to make it easier for other families, for other parents, for other people with disabilities, for their support teams. I wanna make it so that they spend less energy on how to do it, and they just do it, and it’s less of a planning process.

The post Stimpunks Podcast Episode 1: The Logistics of Inclusion first appeared on Stimpunks Foundation.