When No Was The Only Answer: Part 1 with one of the earliest Arc leaders Sarah Eskowitz

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My name is Sarah Eskowitz, and I'm one of the earliest members of the Calvert
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Arc, which became the Arc of Southern Chesapeake.
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My husband and I moved to Calvert County the week after we were married.
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He was an oceanographer for the Navy and worked in Randall Cliffs,
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and I was an elementary school teacher and taught at the Calverton School in Huntington.
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And you became a mom in Calvary County? Yeah. Two years after that,
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our son Bill was born and life changed.
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For me, the change was not working and learning all about babies,
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and living on my own because at that time, my husband went back up to New York
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State for his advanced degrees.
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And so the baby and I would move from Calvert County back up to my parents or
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the in-laws in New York, and then back down to Calvert County.
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So I had an adorable little guy who adored people, was as cute as he could be.
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And as we were going back and forth, I kind of lost track of developmental milestones.
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So we had a lovely, lovely infancy and, you know, it was when he became what
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was supposed to be a toddler that we realized, oh no, something is absolutely not right here.
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And that's when we had the doctor's appointments and the examinations and everything,
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and discovered that he was a little guy who had a whole wide range of significant disabilities.
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So they're all kind of characterized under cerebral palsy.
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And obviously, he's 54 years old today. He still has the same disabilities.
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But we deal with them. He deals with them in a pretty magnificent way.
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He's still a very, very, very social person. He gets around with a walker and a wheelchair.
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He is nonverbal, but he uses basic signing, and he is the best charade player you've ever known.
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He gets people's attention from across a crowded room.
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They will come over and ask him what he wants,
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and he once bummed a cigarette from a guy in a bar who was sitting on the far
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side and apparently he had been miming smoke,
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and this guy got up off his chair, came all the way around the bar,
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looked at me and said, is it okay if I give him a cigarette?
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Oh, no, thank you for asking.
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But that's the power of his determination to communicate and connect with people.
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And it's that connection that just makes life a joy.
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I know you love your son, but I want to go back to you because you became a
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parent during really groovy times, so to speak, 70s. That's right.
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Women had to stay at home to raise the kids if they could afford to.
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And it's very different today's standards. A lot of parents are two job,
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if not more job, families dealing with the cost of just keeping a roof over the head.
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And it must have been kind of interesting for you because you probably grew
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up with one set of ideals of what it would be like to be a parent.
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And then, well, suddenly you had a challenge.
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And I know people are really pissed off when I say that because parenting is
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a joyful thing, even if your child has a disability.
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Of course it's joyful. That's the one half of it. But everyone knows that parenthood
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includes huge challenges, disagreements, problems.
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This is life. We work them out. It's all how you work them out that makes each
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family unique. But there have always been challenges to families,
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and there continue to be today.
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We were just at a slightly earlier stage there in the information.
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We were a little bit unusual because both my husband and I, when we were in
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high school and college, worked in institutions for people with mental disabilities,
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physical disabilities. and intellectual disabilities.
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So we were aware of what was out there.
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And we worked in some that were okay, but you wouldn't ever want to live there yourself.
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And I worked in one where you wouldn't want anyone to live there.
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So we were very aware of the real problem,
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of all of the disability funding going to institutions, which were doing the
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best, but the model just didn't work with large groups of people.
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So we knew there had to be something else.
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And that's the point at which we ended up having a baby who clearly was going
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to need a lot of the services that we had seen provided in an institutional setting.
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And we knew that that was not going to be our family. So what's next?
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And in Southern Maryland, there wasn't a next thing.
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I think my first couple of years of advocacy were basically saying,
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you're telling me that this wonderful new center, the Great Oaks Center,
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was built exactly for your son.
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And I said, no, no, it's not right for him, and he is never going to live there.
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But what else do you have to offer me? And they said, why?
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Why? I mean, it's for him. That's who it was designed for. I said,
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no, you're missing something.
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You're telling me that as a child, he can't live anywhere else but in this institution?
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There's something missing.
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So that was the very, very, very, very early days where it was institution or none.
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In Southern Maryland, it was none.
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And that's where the advocacy started, because there was the proposed Southern Maryland Center.
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And that was to be a small institution serving Charles, St. Mary's, and Calvert County.
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And if the funding went to this mini-institution, the mini-institution would
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be in Charles County, and it would not be close to home.
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And it would still be an institution, a larger than a family-sized home.
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And we were becoming clear that a family-sized home of some kind is what was needed.
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So in the early days, we were advocating for no institution,
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even though we were told, if you do not accept this institution,
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there will be no funding coming.
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I said, okay, no funding for the institution.
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We'll have to start from scratch and make a case for the desirability of funding
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for community centered programs and services.
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And when the push for the Southern Maryland Center was successful,
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That was about our most thrilling time because it meant that the state legislature saying,
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no money for this mini institution.
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Let's look at what kind of funding you can provide within each county for the
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smaller homes and services.
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That was the breakthrough. Do you remember the name of the legislators that
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you had to convince that sometimes mother and father really do know best when
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it comes to an individual son?
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Early on, it was our delegate, Tom Reimer,
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and he was very, very dubious of the feasibility, the desirability of small community homes.
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And he told us we were wasting our time.
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I assure you that later on, he made quite a turnaround and he became one of
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our strongest supporters.
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And I think that's true with a lot of the legislators because not many people
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had experience with disabilities, especially significant disabilities.
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And so they would take the word of, in that time, I don't know if it's
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still called the same thing, the Mental Retardation Administration,
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which is the one that would propose how the funding would be used.
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And so they accepted that their state agency knew what were appropriate services
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for the people in the community.
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And that's the agency with which we had very significant differences. I bet.
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Yeah. Because everybody wants their piece of the pie. Nobody wants to give it up.
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But you're not talking about money. You're talking about having a small,
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more homey, comfortable place that would not overwhelm a child to live in.
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Yes, exactly. And a place where that child knows there is someone available to that child.
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You aren't always wiping your child's nose, but there's proximity.
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The ratio of staff to the.
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Individuals who live in a home is so important. And so many activities are not
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possible once you get past a critical size.
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And the larger you get, the fewer of the home type activities are going to be successful.
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Today, my son lives in a supported home environment with a good deal of support.
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I mean, his needs are lifelong.
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He has five housemates. Three of them are men and two of them are women.
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And I just love seeing him hug a housemate who is just having a hard time and is anxious.
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Seeing him care for someone else and reach out to help him is just great.
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But likewise, seeing him tease a staff person warms my heart because I was that person for so long.
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And to see him accept a staff person and have a relationship that includes humor is just priceless.
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So you get so much when you get down to the smaller sizes, just like we all
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know in our own homes, our own families.