Speaker: Debra Rich
Please introduce yourself and your connection to severe forms of autism and related disorders.
Debra Rich: Hi, my name is Deborah Rich. Um, I'm the parent of a 23 year old uh individual uh with a profound autism. Um, this badge that we never leave home without when we're out in the community pretty accurately describes my son. Um, it reads, I'm the caregiver of a child with autism. He's unresponsive, nonverbal makes no eye contact, unaware of danger, subject to outbursts. That's a pretty accurate description of my son.
Please describe what you wish more people knew about someone you care for with severe autism.
Debra Rich: What I wish more people knew about my son is that um in, in addition to profound autism, um he's also impacted by uh intellectual disability. He has a seizure disorder, he gets temporal lobe seizures, you know, uh several times a day. Uh he has gluten and dairy sensitivity um and just, you know, overall G I issues, uh he has an auditory processing disorder, he has severe sensory issues. Um and all of these things contribute to those sudden outbursts and uh periods of unresponsiveness, which uh a lot of people don't realize that that's, you know, at the back of what's causing these behaviors uh with my son. Um So, yeah, it's, it's, it's, it's a challenge and it's a puzzle sometimes, especially because my son is non verbal and I can't, you know, uh tell us a lot of information we can sometimes it's, it's anybody's guess what's really going on with him. But these are just some of the things we're that we are aware of. Um as they say, if you've met one person with autism, you've met one person with autism. Um In addition to this, my son actually dislikes fidgets, unlike a lot of kids with autism. My son dislikes video games and uh electronic devices. Unlike a lot of people with autism, my son uh dislikes animals, unlike a lot of people with autism. So these are all things that make him different than typical folks with autism. Uh My son with autism is also not able to read or write. And so um unlike some people that are non verbal, who can communicate with a communication device, they can either type or uh uh then or communicate in that way. My son's not able to do that. Um Partly also because of his intellectual disability, a lot of people with autism don't realize that they just assume, oh, we'll just let him type it out like I do, he can't do that. So, um so that's another thing people might not be aware.
Please describe a change you think could help make a positive impact on families affected by severe forms of autism and related disorders.
Debra Rich: One thing that can make a uh profound impact for families, especially anywhere but here in the state of Connecticut and anywhere around the country, we need more programs that are accepting of in individuals with profound autism, especially individuals that require 1 to 1 support. Um As you can see, I'm working out of my minivan. Um If you're wondering why I'm doing all my recordings from here. This is my home office Monday through Friday while my son goes off to his day program uh from nine until two. So this is uh this is where I get my work done. There's my laptop, there's my lunch and my self care kit and whatnot. Um We need here in the state of Connecticut is uh we, we need more programs in uh around the state. So I don't have to drive out 20 miles like I'm doing right now uh Monday through Friday too so that my son can, you know, get out of the house for five hours and mom can get a little bit of work done, you know, in her minivan and sometimes it gets very hot in here, especially in the summer. Very cold in the winter. So I have a Duncan where I can go in and use the bathroom and I have access to Wi Fi here and, uh, I can get a cup of coffee and, um, can cool down or get warm. So, instead of, uh, you know, having my minivan be my home office. So it's, it's, it's not ideal. It works, but it's, this is, this is far from ideal and we need more programs. We need transportation. Transportation would, would be here in the state of Connecticut, you know, for, for adults. I mean, there's like a million uh van companies that transport school kids, you know, I see them every day. I pass them, you know, on my, on my way here and um you know, um why we don't have uh van companies, why they, why uh uh Department of Developmental Services is not contracting out with these same companies to provide uh transportation for adults to their day programs? I have no idea. Um um you know, maybe somebody needs, you know, to start a band company for folks with the for adults that would help us out a lot. Um uh But yeah, o overall there's more programs and whatnot and uh I'm very fortunate my employer is very flexible with me. Um So um I uh feel very blessed that at least I have a job I can get a little bit of work done. And uh but yeah, between my full time job and, uh, full time caregiving, it's, that adds up to, you know, which I'm not paid for and that adds up to a lot of hours. So it's, it's very, it can be very exhausting and self care can be very hard.
