Hosted by Erica Jolene with special guest Amanda Kaufman, MSW | Transcription HERE
In this week’s episode, I am sharing the conversation I had with Amanda Kaufman, MSW, who previously worked closely with our family through an organization called Division of Specialized Care for Children (DSCC). Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special health care needs.
DSCC was one of the first organizations to step into our lives, they were some of the first social workers who came into our home and began helping us to navigate our new norm with a medically complex child. The beginning of this experience is actually very difficult as it is occurring during a time when you, as a parent, are still learning how to cope with the acceptance of the unexpected that comes with an complex diagnosis. DSCC has played a tremendous role in helping our family to thrive. Not only have they helped to provide the means that has allowed us care for our children at home rather than a hospital or an institution, but they have also supported us emotionally throughout this entire journey.
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Links related to this episode:
Medically Fragile Technology Dependent Waiver
Maternal and Family Block Grant
Episode Transcription
Erica 00:16
Welcome back to Atypical Truth. I'm your host Erica Jolene. In this week's episode, I'm sharing the conversation I had with a social worker, Amanda Kaufman, who has previously worked closely with our family through an organization called Division of Specialized Care for Children. You will also hear me refer to it as DSCC.
Erica 00:41
Amanda does a really great job of explaining her role in DSCC and their mission to help assist families of children with special needs. DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.
Erica 01:04
The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis. DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home, rather than in a hospital or an institution; they've also supported us emotionally throughout every step of this journey. They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and the even goes so far as to send birthday cards to each of the kids - which I just can't express it enough how touching and heartwarming that singular gesture is.
Erica 02:01
So if you have a child with disabilities, special needs, or a complex medical condition, and you don't have an organization like DSCC in your life already, I would highly encourage you to search one out in your own state. As Amanda explains in the episode, every state should have one, it just may have a different title or name. I'll just go ahead and let you hear more about this program and their services directly from this source, my friend Amanda Kaufman.
Erica 02:38
Hi, Amanda, thank you for joining me today.
Amanda 02:40
Thanks for having me on today.
Erica 02:42
I'm excited to talk with you and learn just some more fun facts about you that I haven't had a chance to talk to you about - which is surprising because we do a lot of sharing when we finally do get together.
Amanda 02:54
I have found that to be true on all the families I work with.
Erica 02:58
Okay, well let's just jump right in then. What did you want to be when you were growing up?
Amanda 03:04
Well, up until third grade, I wanted to be an astronaut was actually what I wanted to be. And I distinctly remember in third grade, my third grade teacher, which I will not name because she's still, she is even one of my favorite teachers I still see are from time to time, but she told me I wasn't smart enough on math to become an astronaut. I was never gonna make an astronaut. And after that, I was like, "well, I guess I have to find something else to do." (laughter) I actually went to school for special education originally and I just...it was really hard in special education. I loved working with the kids and everything else. But I don't know just the pit of my stomach was like this isn't what I wanted to do. So I switched to psychology when I was in college and I graduated with a psychology degree.
Erica 03:54
Awesome. Wow. Do you have a favorite book movie or your TV show? recommendation?
Amanda 04:00
Um, currently my favorite movie is probably Mr. Rogers Neighborhood with Tom Hanks.
Erica 04:05
I haven't seen that yet.
Amanda 04:07
So my God, Erica, it is life changing. You need to watch that movie. I'm
Erica 04:11
Putting up the top of my list.
Amanda 04:13
Yes. And I don't know if it's just because of the time I watched it. It just hit so many chords in my life that that was just what I needed to see. But yeah, it was excellent. He did a very good job portraying Mr. Rogers.
Erica 04:26
Okay. What is one of the best pieces of advice you've ever received?
Amanda 04:33
Um, one of the things is probably when things go wrong in your life you just need to stop and think five years is this really gonna matter? Who a lot of people they get upset about little things. It's just in the moment and they truly don't matter down the road.
Erica 04:46
Hmm. Quality advice right there. That is good.
Amanda 04:51
It saves me a lot of heartache and stuff when I think okay, is this really worth the effort of being upset about
Erica 04:57
I like that. Do you have any pets?
Amanda 05:01
Yep, I've got two cats bank in Berkeley.
Erica 05:06
What is your favorite thing to nerd out on?
Erica 05:09
And I love watching old episodes of Star Trek The Next Generation. And even though I've seen them 1000 times, I still watch them whenever they come on.
Erica 05:18
I do too.
Amanda 05:20
Yeah, there's just so much you can learn from that.
Erica 05:23
Not a lot of people know this about me. But it is definitely like a comfort show for me.
Amanda 05:29
I agree. I have the same feelings about it. My sister I grew up, our dad passed away when we were little. So when we started watching that show, we really thought Captain Picard would be like the best father ever.
Erica 05:41
Oh, yeah, I could see that. He's definitely a father.
Amanda 05:45
That's a lot of the why it brings such comfort that Yeah, I want that as my family. And so yeah, I like it.
Erica 05:53
Okay, are you an early bird or a night owl?
Amanda 05:56
Probably a combination of both right now. I just feel like a tired middle duck type thing.
Erica 06:03
The first time I've got that answer, but I feel like everyone can relate. (laughter from both)
Amanda 06:09
It just kind of depends. If I've got something going on that day. I like, oh, we're going to yard so I can be up like two hours before with no problem.
Erica 06:16