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In this episode, we’re excited to welcome Michele Streeter to the show, to talk with show producer Audrey Homan.
Michele Streeter is mom to Ocean and April Streeter, two siblings you met in Episode 20. Michele talks about what it’s been like to provide support and guidance for a child with a disability as they navigate the transition to adulthood, post-secondary education, and independent living.
Michele Streeter is also a Family Resource Consultant for the Vermont I-Team.
A full transcript appears below.
Audrey: Welcome to another episode of Green Mountain Disability Stories. My name’s Audrey Homan and I produce this show for the UVM Center on Disability and Community Inclusion. That’s at the University of Vermont.
Today, we are lucky enough to have with us Michele Streeter, and she’s going to tell us a little bit about her connection to CDCI and to this show. Michele, would you mind introducing yourself, please?
Michele: Absolutely, Yes. Hi. Thanks, Audrey. I am Michele Streeter and I am a Family Resource Consultant for the Vermont I-Team. I work in the northeast territory, the Northeast Kingdom of Vermont. I’m one of four FRCs that work on the Vermont I-Team and support families.
Audrey: And FRC stands for Family Resource Consultant?
Michele: Yes, Family Resource Consultant.
Audrey: Thank you. Awesome. Can you tell me a little bit what you specifically do as a family resource consultant for the Vermont I-Team?
Michele: Well, I can let’s see. It’s. So as a family resource consultant, I work with the family part of the Vermont I-Team. The Vermont I-Team is an interdisciplinary team that works with schools, with families that have children with complex health needs. The family resource consultant works with the family of the children that work in the I-Team. So my role is basically to support the families in whatever they need, in terms of maybe medical appointments, funding for respite care, coordination, intermediate at a doctor’s office, somebody to help them pull all their appointments together. Now, I’m not that person — but I will help them find that person.
You know, at the beginning of the year, I try to I reach out to my families, and I listen and I explain what I do. And then I wait and I see what needs come up. I attend all IEP meetings and sometimes I glean from those meetings what the families are looking for. I network help, and families network and connect with other parents because I think that is really important. I basically just try to be that support.
If I tell my families that there are things that you need, ask if I can help. And I certainly will. And a big part of my role is finding that resource and and just helping them navigate through that.
Audrey: That sounds like a lot, but also like you’re doing a lot of work to support families in Vermont.
Michele: It’s our goal. And, you know, we do what we can. and I love it. I love it, especially being a parent of a child with a disability who is now 30 and have been through a lot and and have navigated a lot through the years. It feels really good to be able to share that with other families and hopefully to really help them.
Audrey: So in your role as a family resource consultant for the Vermont I-Team, can you tell me a little bit about what some of the collaboration looks like for you, especially with other organizations or individuals, you know, within the Northeast Kingdom community?
Michele: I feel like a big part of my job is that collaboration peaks because we are isolated and then we go with too many resources to draw around. But we do have The Bridge Program! I work with those folks. Sometimes we share children and we can talk about what opportunities I might be able to provide or research, and we can kind of tag-team together. Often what I’ll do is I’ll refer my family to The Bridge Program. If they’re looking for care coordination or help with Social Security, SSI, and they also have funding. So they’re really they’re really a great organization to be a part of if you have a child with a complex health need.
And there’s also the Vermont Family Network who I just use so often to recommend. They have a great respite fund. They have other grant opportunities. They help to connect parents.
So those are two of the organizations that I feel very lucky to be connected with and that I highly recommend, and we’re so lucky to have up here in the Northeast Kingdom.
There’s also an advocate that works for Visa up here in the Northeast Kingdom that I have done some parent nights with. And last year I did a few parent chats, which I hope to get going again either this year or next year, to kind of connect families.
So, you know, bridging those organizations and us all working together, I think really helps me in my position.
Audrey: I’m glad you brought that up because one of the many reasons we asked you to come on the show is because you are mom to Ocean Streeter, who previously appeared on our show with her sister, April.
Now, how has your role as mom to a Vermonter with a disability informed your work for the I-Team?
Michele: That’s another really loaded question, just in terms of having the empathy and compassion for parents that are going through what I had been through or what I continue to go through. You know, just being able to share my story and any hints or tips that help me along the way is probably the biggest way it has informed my position.
Audrey: So if you’re comfortable with it, would you tell us about Ocean’s birth and your experience of their diagnoses?
And before we do that, I want to pause here and let our audience know that Ocean is aware her mom’s coming on this show to talk about all of this. And Ocean has given her explicit approval for telling this story. Consent and ownership are important parts of every family’s disability story, and we want to make sure we’re acknowledging that.
Michele, over to you.
Michele: Okay. So I love telling Ocean’s story, and so: Ocean was our first child, and I was 26 weeks pregnant. Actually. I take that back. I was 24 weeks. The baby was 24 weeks gestation when my water broke prematurely. And so we rushed off to the hospital, and I was on bed rest for ten days in Burlington.
And every day we were told that every day you could keep that baby in, every day that baby would get stronger.
I had betamethasone shots. I was on bed rest, trying to remain positive. And ten days later, Ocean was born.
Ocean was a pound and a half at birth.
And I remember being asked that evening if we wanted to aggressively keep Ocean alive. And certainly we– we did. And Ocean was in the NICU for two and a half months on the respirator at that time. And two and a half months later, was sent to the fifth floor for one month, and then finally was able to come home weighing six pounds, nine ounces.
And so that was really a special awakening to our journey.
You know, I remember we were as positive as we could be. We were scared to death, but we had really great support. And the NICU was amazing. One thing that happened in the NICU — well, many things happened, but one thing that was just being introduced was something called Skin-to-Skin.
And I believe they still do that now where they take the baby on the respirator, and the tube, and they place the very tiny baby on your chest, and you bond with the baby. And so that was that was amazing.
And to this day, we have a very, very close bond. And at that time, we knew that Ocean was probably going to have some complications — and did have actually a lot of complications.
One we were most concerned with was retinas and detaching retinas from the lack of oxygen, we knew that it could be some brain injury. It was respiratory. Ocean’s lung collapsed more than once. Being on a respirator is not great for a developing baby. But if you had seen the episode before, you will know that Ocean is now 30 and breathing just fine. *laughs*
So we call Ocean our miracle baby.
Audrey: So when Ocean came on the show, they talked about being diagnosed with cerebral palsy and then later with autism, and how those disabilities have informed some of the challenges they’ve faced in getting accommodations and services and support.
But what was your role like as Ocean’s mom in getting Ocean those accommodations, services and support?
Michele: So actually, my role was — it was very easy.
When Ocean was diagnosed with cerebral palsy, we were immediately hooked up — and even before, you know, as a premature baby, with our daughter, [Ocean] — we were immediately hooked up with The Family Center in Morrisville, and with early intervention and physical therapy.
And we we had this really great support, really from from eight months on; we had a physical therapist who became like family because she was — she became part of our family. We felt very supported.
And I felt that, you know, from preschool, once the IEP was in place, Ocean had has had a para-professional right on through high school. We’ve had really good folks in special ed. So I never felt, you know… I certainly had to advocate, but I always felt supported and I always felt that I could ask for supports that weren’t happening, or were, or needed to happen.
So that that that piece was was pretty smooth.
I will have to say that when Ocean went to college — Ocean graduated high school and went to Landmark College in Putney. And we thought, okay, this is going to be great because Landmark College is a college for neurodivergent learners and we thought this is going to be this is going to be the perfect fit.
But what we didn’t realize was that there was still that big social piece. That in high school, you know, we worked with the special educator, we did some, you know, not really social groups, but, you know, we tried to work with peers and and help make connections.
But there was that autism piece that was not diagnosed through high school but we thought, well, this is okay. We know Ocean has challenges and has an IEP and and it’s pretty comprehensive. What else should we be getting?
Well, you know: I didn’t know what I didn’t know.
So actually I did ask the special educator, and she kind of said the same thing. “Well, we are, you know, we’re working with the Ocean on social challenges.”
That was great in high school. But so once we got to Landmark — which was a phenomenal school — it just did not meet the needs of Ocean.
Ocean was lonely; Ocean was having a hard time connecting. And there wasn’t that — again — social support.
So Ocean did I think two years at Landmark and did get some really great organizational skills. There are a lot of good things that came out of it. We just realized it was we needed more.
And I went to the D.A. — that’s our designated agency — and said, you know, we’re ready. We need some more support. We need some maybe some community support, we need some social groups — we need more.
And they said, “Well, Ocean doesn’t have a developmental disability, Ocean has an orthopedic impairment.”
And I said, “No, you’ve not met Ocean, you understand? No, sorry.”
And that’s when my husband and I realized that we needed to pursue the autism diagnosis. And so we did.
And I remember going to see Dr. Workman in Burlington with Ocean (Ocean was fine with having me right there).
And it was just so obvious to me within the first 10 minutes that maybe we missed something really important.
So we got the autism diagnosis and we went back to the D.A. and I said,
“Great, you know what? We need one more thing. We have to make sure that Ocean is — this is affecting Ocean. Ocean’s not able to be independent and adapt, and there is an impact on their life.”
So I was interviewed by a psychologist and in fact, yes, we passed that gate.
And so Ocean was granted the developmental disability — well had a developmental disability, but Ocean was granted services at our designated agency, and that was a turning point.
Because after Landmark College we went to Lyndon State College, and we were able to get some support. Lyndon State College turned out not to be the best fit for Ocean, so that was a little short-lived. (There were some other health issues going on.)
Then we quickly went to Johnson State College.
The Agency of Human Services in Newport is the designated agency. They were amazing.
And they said, “Well, we’re going to we’re going to send service providers to Johnson. We’re going to help.”
It was amazing. It was so great.
And it helped! Ocean had an apartment like in the second year, it helped with teaching, you know, laundry and house-cleaning and food and making this send more that organization piece.
Ocean also does not drive. So they were a huge help with transportation.
That is a very long answer to how I helped with getting the the accommodations and the supports that it was needed. But that’s the thing, right? It’s a journey.
And I’m sure there are things that we will continue to learn that are in Ocean’s best interest. But those were the big ones.
Audrey: Thank you for that. What, for you as a mom, was the most challenging part of that whole process?
Michele: Gosh, I you know, it’s frustrating when you have to wait and you really think you know what’s best for your child. But, you know, there’s red tape and there’s a waiting time. I think it’s just a little frustrating. I think that was the hardest part.
I think that the folks I worked with always, you know, had best intentions. But it takes time. Yeah. When your child is suffering, you don’t really have that time.
Audrey: Now, let’s flip that coin over and ask: what was the most satisfying part for you of the whole process?
Michele: I think that the people that we met were really that support; people really do want to help you. We’ve met some really great folks and we’ve learned a lot. Amazing.
Audrey: So because you’ve gone through that whole process with Ocean, what’s one piece of advice you could offer to other families who are maybe just starting out trying to get those accommodations and services for their child?
Michele: I guess, you know, you just have to persevere. And I think networking helps.
I think, you know, it can be very isolating. So network with other parents that have children with disabilities; I think that’s huge. And just persevere and, you know, just know that you know best as a parent.
Audrey: Now you got to be a mom who watched their child get successfully through a post-secondary degree. Can you tell me a little bit about what that was like? How involved were you in Ocean’s journey there?
Michele: Fairly involved. You know, again, we’re very close. I’m not taking Ocean’s credit. Because Ocean worked very hard and accessed a lot of great services. But we have a very strong connection. And so, you know, we stayed in touch a lot. And, you know, we were proud of every — my husband and I and our family — proud of every celebration.
We visited quite often. We were interested in Ocean’s writing and Ocean’s projects and homework and social connections.
Audrey: Amazing. Was there any part of Ocean’s journey through post-secondary education that you wished had been different?
Michele: …yes. You know, socially, again — and I think Ocean will tell you that –that’s the hardest part, I think of Ocean’s life. It’s hard. It’s hard when you are in your twenties and you’re trying to connect with peers anyway. And having ASD [Autism Spectrum Disorder]…
If I could have made it easier for Ocean to have more social groups, or more peer interaction, and just more time with peers, and understanding peers? That’s what I would have changed.
And it was not for lack of trying. I think it would have made a definite difference.
Audrey: So Ocean shared in their episode that they’re now in an independent living situation. How has that worked out for you? It seems that from listening to Ocean, that it’s working pretty darn well for her. But I wanted to hear from you. It’s like what it was like for you as the mom navigating that situation and helping support Ocean with that. It’s a pretty big step.
Michele: It is a big step. And I won’t get into — you know, we’ve tried a lot of things, right? Right after college and having an apartment in college and then having an apartment in Burlington and in trying to hook up with supports right after COVID, which was horrible and, you know, and Ocean will tell you it was kind of a very bad time in their life.
And so they came home from Burlington and we thought,
“Okay Ocean, we know you want to live independently. But, you know, here we are in the Northeast Kingdom in the middle of nowhere. You don’t drive and we work. And it’s tricky.”
And I — as a mom and maybe as a family resource consultant — I’m really good at digging up alternative opportunities.
So I came across Green Mountain Support Services online.
And I thought: Hm. It’s an agency we haven’t tapped in. It’s not around here, it’s in Morrisville, but I’m going to give them a call.
And it was somewhat short of a miracle.
I called and the intake person said, “Oh, you’re looking for a home for Ocean? It’s really, really interesting that you called today–”
(And this is a true story.)
“–because I was just talking to a gentleman who has a shared living provider opportunity open for somebody, Oceans age, and I think it might be a good fit!”
And I thought, oh my gosh, this is a miracle. And it really was. It took us a while to pull it together, but it was perfect for Ocean.
So now Ocean is living in Hyde Park with a gentleman who has a house, and Ocean lives in an apartment attached to the house and has a couple of meals a week with this gentleman, and goes and has activities that he’ll do with him and also has a respite worker. So the respite worker will take Ocean to do laundry and to do grocery shopping.
And we are also working now with Hireability, because Ocean is ready to work. Ocean has done a lot of volunteering. But yeah, at the library. Ocean loves the library, is a writer, loves to write. So we don’t know what the job is going to look like the first time out of the gate. But we’re hoping that that’s going to happen relatively soon.
And I think that will just fill out Ocean’s really very, very busy and active life.
Audrey: That sounds amazing. I’m so excited for them to get more access to the library and explore, you know, working at the library. You mentioned that you live in the Northeast Kingdom. And for folks who are outside of Vermont who are tuning in to this show, the Northeast Kingdom is a very, very rural area of Vermont. It is separated from, say, the cities of Burlington and Montpelier by a lot of mountains and a single lane road. Can I ask: do you think that there’s anything about being in such a rural area that either worked for, or was more challenging for you as a family negotiating access to services?
Michele: Okay. Well, in terms of accessing services, we are very lucky to have Northeast Kingdom Human Services.
I feel that they’re small enough and maybe, you know, because we are in a smaller area, they were really wonderful. We had really great people. There are great people everywhere, but there are really great people in the Northeast Kingdom. And I think it’s a small community and maybe that is where I feel a little more connected. So that was a positive.
And then, you know, there’s a lot of job shadowing that we did. Again, like in the community, the smaller community, you tend to know more people. So that was a positive in terms of people supporting Ocean and just knowing Ocean. But then, you know of course, we are so isolated. And we don’t have the resources that say, Burlington would have. We’re just too far and too separate. So there’s a great sense of isolation.
And I think parents who want their children to be connected and they want to be connected just maybe have to work a little harder.
(I don’t know, maybe that’s not true.) But I feel like in connecting those dots, you know — and we have three children and none of them really wish to be in the Northeast Kingdom at this time because it’s tough, you know, it’s a lot of driving, but — it’s an absolute beautiful place to live.
And Ocean loves coming home to visit it, but…
Audrey: That’s amazing. I love the Northeast Kingdom and how rural it is. It’s a really special place. So I want to be respectful of your time, so I’m going to wrap it up with one last question and that is: what’s one thing you wish everyone knew about being a mom to a kid with a disability?
Michele: Well… just one thing? *laughs*
Audrey: You can have a couple of things but whatever you feel would be helpful to share?
Michele: Well, I just think that when you meet a parent of a child with a disability, you’re meeting somebody who is self-educated in their child’s disability. They’re compassionate, they’re tenacious. You know, every parent has challenges. But I think when you layer it with a child with a disability… whose parents are working really hard, learning a lot, they don’t give up. They’re strong, and they have compassion, and you they’re really very interesting people. And you know I don’t say that for myself. I see the parents that I work with, and I learn something new from them all the time.
And they don’t get the credit, I don’t think, always.
(We may want to cut that, Audrey. I don’t know.)
Audrey: I do. I love it. I love it. I think it makes a lot of sense. And I think it’s that’s a beautiful sentiment to to help us kind of remember. I think that right now we’re — as a society and maybe as a world — we’re having a lot of trouble remembering to put ourselves in other people’s shoes and make those connections based on empathy and based on the the sort of implicit understanding that we all need to have: that everyone is is working with challenges that we each of us know nothing about.
So, yeah, you’re right. Parents of kids with disabilities aren’t getting enough credit for the education that they’re doing to you know, educate themselves about their disability.
Michele: And it’s not just education too, right? It’s advocating is huge — and it’s not easy. It’s not. And it’s easier for some than others. And it wasn’t always easy for me. And that’s huge.
And I think that schools understand that for the most part. But it’s really important to put yourself in that place because… right now, I mean, advocating for any child is tough. But when you know what you know, the parent knows best.
Audrey: Indeed they do. Michele Streeter, thank you so much for coming on the show and for talking with me about Ocean and about your own journey being there with Ocean. I really appreciate your time and you sharing your expertise.
Michele: Well, Audrey, thank you very much for having me. It has been a pleasure and I’d love to share my story. So thank you.