- respecting your kid’s privacy
- IEPs and educational inclusion
- the amount of paperwork required to be different
- extracurricular activities
- faux inclusion
- interviews and employment
- designing for the edges
- 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.
IEPs and Educational Inclusion
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?
Interviews and Employment
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.
Why We Started Stimpunks
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.