John

I’m John Rhinehart.

John, what part of the journey with your son has helped him the most to be successful in school?

What have you done to advocate for your child’s best interests in the IEP meetings?

What has been the best opportunity for your son to learn about mutual respect for others and self-determination skills?

What advice would you give to students and their parents to help them make the transition to being a young adult and to be successful in high school?

Why would you say it is important for parents and their child who is visually impaired to know about and advocate for the inclusion of the expanded core curriculum in the IEP?

Transcript

John

Hi, my name is John Rhinehart. I’m Max Rhinehart’s dad. Max is a 16-year old boy with albinism and vision-related deficits from that.

John, what part of the journey with your son has helped him the most to be successful in school?

Well, one of the things that, one of my special skills is I am very into technology. So I was always looking for technical solutions to make things easier for Max.

Sometimes I may have made them harder, such as when he was in middle school and he had so many technical adaptations that he had to carry around that he called his nerd kit. Other times… but you know, we’ve managed to slim that down, and come up with really a pretty good mix of things to help him through academic materials.

Max is visually impaired rather than a totally blind student, doesn’t use braille. So he uses enlarged-text books and many of those can be very very large and very cumbersome. So, you know, I always tried to make sure he had a good array of magnifiers to use in different situations, as well as more recently getting into things such as Amazon’s Kindle so that he can download, you know, onto a device and, you know, zoom the enlargement on that to read books because that is certainly much, much smaller than carrying around a five-volume gigantic-sized novel, which would be the alternative to that.

So, just those kinds of things, just knowing what Max’s needs and abilities and you know, disabilities were, and helping him figure out how best to adapt to those.

What have you done to advocate for your child’s best interests in the IEP meetings?

Well, I mean, that’s always a challenge. And one of the best things that a parent can do is to really know your child’s strengths and weaknesses and to advocate for them and to be a strong advocate for your child. And I don’t mean pushy or aggressive or asking for things that aren’t, aren’t necessary, but what I do mean is knowing your child. Knowing what it takes for your child to succeed, and making sure that the school provides the resources to enable him or her to do that.

So, I think the best thing you can do to advocate for your child is to be an advocate for your child. Make sure that his interests or her interests are properly addressed.

What has been the best opportunity for your son to learn about mutual respect for others and self-determination skills?

That’s a difficult one to answer in Max’s question because he’s always been an extremely respectful, polite kid. So, you know, that seemed to be innate in him, and I really didn’t, you know, have any issues with that.

One thing that I did need to make sure that he was aware of was just social differences that he might not always be attuned to. As a little kid, you know, Max would stand very close to adults so that he could read and interpret their facial expressions more easily. And as a little kid, that’s a perfectly acceptable social behavior. However, as he grew and grew and grew, you know, he was six feet tall by seventh grade, it could sometimes be perceived that he was being intimidating or invading others’ space.

So, teaching him that he needed to be an advocate for himself in school but also consider that he might be a foot or so taller than some of his teachers and to be respectful of their space and how to draw the line between advocating for yourself and being perceived as perhaps intimidating.

What advice would you give to students and their parents to help them make the transition to being a young adult and to be successful in high school?

Well, I think, I seem to have a theme here, and that’s, you know, knowing strengths and weaknesses. And one of the mistakes that we made with Max in his freshman year was allowing him to be placed too much in a kind of pre-determined curriculum, you know, for him. And I think that, you know, that probably works for a lot of students, but I think the way they designed it, you know, didn’t work particularly well for Max.

And so, you know, the strategy that we came out with for this year was to not kind of, you know, pile up all of the academic classes at the beginning of his high school career but to kind of stretch them out so that he’s not overloaded academically. And to mix in classes that appropriately address his strengths and weaknesses. Max loves history. Very interested in politics. Very interested in current events. And to make sure that he gets to take as many of those kinds of classes as he can. And fortunately, as we live in the suburbs right outside of Washington, DC, there’s maybe a little bit greater array of choices in that area than there might be in some other schools.

One thing that I thought was very helpful for Max was that, you know, we at a very early age tried to make sure that he was going to be in the same school system or the same school cluster throughout. We didn’t want to, you know, really move. We were avoiding moving him.

And we did that for a number of reasons. Part of Max’s visual impairment means that he isn’t able to easily recognize people beyond the sort of bubble distance. And so we thought, one theory was that making friends early, and being able to advance through different grades with them would be, would be helpful.

It also helped, you know, avoid some misunderstandings that Max was too close to somebody, or something like that: “Oh that’s just Max. He does that that.” That kind of thing. Kids know, for example, on the playground not to throw a hard ball at him really fast because he’s not going to see it until it’s, right on him, you know. So treat him gently, you know. With good reason. If you did hit him with a hard ball, Max, at six feet, might have gotten a little angry and gone after them on the playground. (laughs)

Why would you say it is important for parents and their child who is visually impaired to know about and advocate for the inclusion of the expanded core curriculum in the IEP?

I think it’s very important for parents to realize that once the academic accommodations have been taken care of that they also make sure that the teachers, particularly in the lower grades, are addressing other needs, such as social needs, make sure that the PE curriculum, for example, properly addresses Max’s needs so he’s not sitting on the sidelines so that he can actually participate. And you know, and just make sure that, you know, the school kind of addresses the whole student while he’s there and not just focusing on the academics.

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