Dr. Peggie Staib

Interview 7/7/23

Background: I was an elementary school teacher for 10 years. And then I became a specialist in the district providing differentiated instruction, which means I would go to classrooms and work with small groups of students who were grouped according to their ability. And the teacher would work with a particular group and I would work with a particular group. And sometimes I've worked with the lowest-performing kids. And sometimes I've worked with the highest performing kids, my role was more so to model for teachers how to differentiate in their classrooms and how to meet the needs of all the kids because of there being such differing abilities within a single classroom. So that was my role for a while before I was a building administrator and then I went on to be an administrator for educational services, and then assistant superintendent, and then an associate superintendent. And probably my most intense experiences with students who were not typically developing was when I was an associate superintendent at Eastern Suffolk because we had 18 special needs schools in our area, serving all of the districts in eastern Suffolk County. So districts would send kids that they were unable to teach in their schools to us. And we would teach them because we had specialized programs. And within those programs, we provided support to siblings. We provided support to parents, grandparents, and anybody who was willing to have some kind of parent training or assistance with dealing with a non-typically developing student in their family. So that's where I had the most experience with this. Not that that didn't happen in the regular districts, but this one was specifically designed to meet the needs of these students.

What encounters have you had with the families and the siblings directly who have children or siblings with developmental disabilities?

Those encounters were educationally based mainly attending what we call in New York CSCS, which are conducted by a team. So it's a child study team that meets and goes over the educational and psychological testing that happens for a student. And because it's a team, the parent is there, the student may be there, and a representative from the family may be there. And the meeting is called to go over those results and figure out the best course of action for treating or educating that child in as least restrictive environment as possible. All of our environments in Eastern Suffolk were self-contained. So that means there were no typically developing students in those classrooms. And the reason they were there was because they needed a more restrictive setting. And that was really difficult a lot of times for families. So we tried to provide them support through parent organization and through connecting siblings so that they can know that somebody understands what it's like to grow up with someone in their family who is not typically developing.

What are some other common experiences that these siblings may encounter?

What I found was, a lot of the students who had siblings who were not typically developing always had to explain to their friends why things may be different in their home. So if we had a behavior plan, let's say for a student who had difficulty maintaining self-regulation, and the sibling had a friend over, they might have to explain why a parent was doing a certain thing such as counting down from 20 or some sort of meditative process to bring them to focus. And that doesn't always happen in homes where everybody's typically developing. So explaining, behavioral differences and disabilities. We had some students who were medically fragile, and they may have a feeding tube, they may have a ventilator, they may have any kind of medical equipment, and the siblings are often left to having to explain that to their friends when they come over. Some of the siblings were embarrassed by it and some of the siblings really had trouble participating in things because then the whole family would come and it was difficult. And what I found mostly was that they had to find ways to deal with explaining their situation to other kids who might not understand and may never have seen anything like that. But they live it every day. I also found that siblings as they grew up, really developed much deeper empathy than anybody else. They had a real understanding of what it's like to have difficulty navigating the world. And they became very aware of places that may not have a ramp or places that may not have an understanding that a child is having a behavioral difficulty such as a restaurant, or a store. And they were really pivotal in some ways in getting, especially our police departments, started to be trained in how to deal with adults and children with autism. So the siblings and parents did a lot to advocate, especially for our autistic population.

How could the sibling relationship be affected by one sibling’s developmental disabilities? 

I think it's difficult to grow up experiencing those situations when you see everyone else developing typically. I think that from what I've witnessed, as siblings grow up, they either go in one direction or the other. They either become more accepting and really become advocates or they sort of run from it. We had students in our high school programs who were having real difficulty dealing with the situation in their families. In some families, there may be just one typically developing kid, we had a set of triplets who were autistic, two were nonverbal and one was verbal. And then there was a typically developing son. So that typically developing siblings really desired to get out of their house and couldn't wait to grow up. That sibling actuall ended up going into wanting to be a teacher and wanted to do something to educate other people about the best ways to deal with the emotions that are surrounding growing up in homes like that.

What advice would you give the siblings who are trying to navigate their situation both while they are growing up and afterward? 

I would tell them to try to find a network and try to find someone else who understands or is going through something similar. And it doesn't necessarily have to be a disabled sibling. You could have a disabled parent or you could have an ailing grandparent or something else. Everybody has something in their lives and I think kids should try to talk about it with one another and seek out ways to accommodate the feelings that come. We have this group called banana splits. And it was originally supposed to be for kids whose parents were divorcing but it turned into a resource for kids who had any sort of challenges in the home. We did it early in elementary, it was a k through third program. What was important for us as teachers was learning what was going on in the homes where these kids were growing up so that we could support them. And so we could be sure that we kept in mind that, for example, a kid may not have slept all night because their sibling had a bad night. So when they show up for education the next day tired, we needed to be a little bit more empathetic and give them extra time and understand that it's not their fault. Or if they didn't get their homework done, or whatever it was. We found out a lot through having these kinds of groups where they had a place to belong. I really believe in networking. I think that just getting it out there, first of all, is cathartic. I think a lot of the siblings kind of feel like I'm the only person dealing with this. 

Would you tell the parents directly who have a special needs child and are looking to support their other children too?

Don't forget the other children. It's really important because parents, first of all, when you have that baby, you have all these hopes and dreams for them. And then it doesn't turn out that way. And you spend your life trying to fix that because your hopes and dreams were for something else. But you can't forget that there are other kids there for whom you had hopes and dreams too. And now you're fixated on doing everything you possibly can for one child, which is right but don't forget to fixate on the other kids as well and make them understand and really feel that they are important. Include them in the planning for the child who has needs. If there's a big decision to make or if there's something going on, keep that open amongst everybody in the family. So if it doesn't seem like something's a secret. I would tell parents to keep the lines of communication open and make them feel just as important as all that effort that you have to put into the a-typically developing kid.