Parents as Ambassadors

Chapters:

1. Introduction
2. What Do We Have in Common?
3. IEP America with Acronyms
4. Negotiate Treaty: Deliberations Don't Assume
5. Ambassador Recap

CHAPTER 1: Introduction

BLAHA: Thank you, thank you. I'm just going to get it out of the way and say, "Good morning, y'all." Thank you for getting me out of Texas for the weekend. I really appreciate it.

I am very honored to be here. To come back to Perkins as someone who's worked in deaf-blindness, is... it's just the heart of the field here in the United States, and it feels so good to be back here. And also, I so much appreciate the opportunity to work with another deaf-blind project.

You know, we're a small field. We can't all ever, ever get on the same elevator. We could fit, but it could all be over in one, you know, terrible plunge. So there are not many of us, and it is very validating to me to get to be with other people who work with children with deaf-blindness, and all the support that NFADB gives the families. I'm just really honored to be connected with all three agencies. I am kind of a... well, I'm not a mess, but I'm kind of a... ( laughter ) ...collection of things.

I was fortunate enough to stumble onto the field of deaf-blindness when I was, you know, 30 years ago, so it was my good fortune to have that happen. I... as a teacher of the visually impaired, I picked that up part time because in the adjacent county, Burnet County, there was no teacher of the visually impaired. And so I said I would do it one year, and so, of course, this is my sixth. And we are recruiting.

We do have a teacher who is training to take the position, and so now I'm really sad, you know? But I've had that experience in IEP meetings, being the teacher of the visually impaired.

In the field of deaf-blindness, one thing that I feel very strongly about is the IEP process for the children. I think that it is... if it's not in the IEP, it's a favor, and you have to have things spelled out to give people guidance and to give your child protection. So I kind of come from it from different perspectives. And the other perspective I have is I have a 30-year-old who has a disability, and so I was on the receiving end of IEP meetings.

And the one thing I noticed is that whenever I left my IEP meeting, I had to eat Mexican food. And, you know, 10:00 in the morning, "Ooh, I want... I want some chili rellenos badly." And I realized this is a coping thing, you know, that I need a lot of cheese and corn and stuff, you know? And my husband and I just would go out and eat Mexican food after IEP meetings. And it's very different — I felt very different in each of those situations about the IEP.

CHAPTER 2: What Do We Have in Common?

BLAHA: And so when I was trying to think... usually I talk to families who have children deaf-blindness, because that's what I do. But they... we have a mixed group, and so I thought, "What do we all have in common? "We have families here with children who are grade-level "with vision impairments, we have families here "whose children are multi-handicapped "visually impaired, we have families here whose children "are children with deaf-blindness, and so what do we have in common?"

And so I was really thinking about this when Tracy and Barbara called me that we would be doing this, because I really wanted to find the link — and I knew there was one. And it just kind of came to me that we are all stationed in a foreign land. And that's where the thought of being an ambassador comes from. Because you're stationed there, you know? Maybe you didn't plan to be there, but you have been stationed there.

And the concept of a foreign land kind of cuts both ways. I think for an individual growing up who gathers information differently, they can be standing right next to you, but it is a different experience for them. And as years go by, there are differences in their land and ours, because the way they gather information leads them to do things that make perfect sense and are completely valid in gathering information and responding and living, and they're going to be somewhat different — almost a different culture — than people who gather information differently.

Add to that, we are Americans, and in America, we have what is known as a non-contact culture. Different cultures have different styles, and in America, we are a non-contact culture. We're very vivacious and friendly, but we have very strict rules about touching and distance. You know, one thing I learned just from listening to people from other countries who are working with these kids is that Americans view space differently. European countries and other countries, the goal is to successfully share space. In America, we appropriate it and defend it. And to the point that if we're even looking at something, we owned all the space between our eyes and that object, so that if someone wants to walk through, they say, "Excuse me."

That's a highly visual, kind of powerful, domineering thing, and how do you explain that to someone who is touching and trying to locate a particular type of ketchup on a shelf, and crossing into a gaze without saying, "Excuse me"? How do you explain how the eye draws a line that becomes cement to the object, and you don't cross it? 1,000 little differences; innocent differences. And so I started thinking about two cultures — both valid. And so kind of as an ambassador, we're stationed with our child and starting to understand their culture — as why they do things. Why do they move too close? Because they're looking at something, you know?

Why, when you're talking to them and they're really listening, do they stop looking at your face and just look away, and you're there talking, and they're over here? It's because they're listening. They're paying such close attention, and their eyes aren't giving them enough information, so they just put them away for a minute, and really pay attention.

CHAPTER 3: IEP America with Acronyms

BLAHA: In our country, if you're not locked eye-to-eye, you're vulnerable. People aren't as nice. Or not... I don't mean, like, they're going to steal your purse, I mean they don't... it's kind of a diminishing. It's interesting, isn't it?

So here you are, learning this culture and understanding it, okay? And then you go into another, totally different culture — a real foreign land — and that's when you start going to IEP meetings. You know, if you think America's different, you know, it's America with acronyms, you know? It gets really complicated in what people are talking about, and everybody's in such a hurry — because good is fast in America. Spit it out, sister, you know?

And being contemplative and thinking through is not as valued in our culture as taking action. And so here, as an ambassador, you cross into this other land as a representative for your child to explain your child to the other culture. And another thing about this ambassador thing is, you know how you help negotiate agreements — legal agreements — and that is what the IEP is for, and we're very blessed to have it in this country, because it is a legal document that you get to help craft.

And another aspect, I think, of being an ambassador is diplomacy, because it is very difficult to keep repeating and explaining the culture to people again and again, but as a career diplomat, that is what you will be doing again and again — explain your child's culture so that y'all can draft an agreement called an IEP, so your child can successfully and safely function in the other culture. And you're doing a lot of educating, and I think, as an ambassador, what you want to do is win them over. Where the great strength is is to win them over so they get it.

That's the difference between being an ambassador and maybe a general with invading troops. And I know sometimes you may feel more like one than another after, you know, after you go at it a while, but I think that this diplomacy piece is powerful to be able to understand why is this person feeling this way and coming in with your information and the way you can unite the two cultures, because both have much to gain from each other — much to gain.

Okay, so one of the ways... I'll have to check my time, because I will just go on, and on, and on. How am I doing? I'm okay. One of the ways... that we do this...

MAN IN AUDIENCE: Want me to give you a five minute warning?

BLAHA: Yeah, a five minute warning.

Because then I'd probably start speeding up! One of the ways, I think, that we do this is really with the accommodation page. That's the directive to the adults — "Please do these things for my child." And that accommodation sheet must look like your child, or it isn't going to work, because if you put "preferential seating," you know, if you have a child with a tunnel vision, "preferential seating" may be in the middle of the classroom.

If you have a child who does not have vision in his left eye and tunnel vision in his right, you're going to want to move him over to get them over the the side of the classroom, where the eye who's not gathering information is closer to the wall — because there's not action there — and that the eye that gathers information is able to scan the classroom. That's real differential preferential seating.

For another child, "preferential seating" with me means that I need to be within two feet with my leg over their leg, because that's how they know I'm staying, and then I... they have the proximity to reach out and touch me as a tactile learner for a child who's deaf-blind. And so you're going to get accommodation sheets that are not geared for our culture, and so you're going to have to look through those and describe them so that I can pick them up and go, "Oh, this is... this is Monique. This must be Monique."

So how to explain that the way your child gathers information will manifest itself in certain behaviors and needs that are valid, and then how to get that into the accommodation sheet is, to me, something that an ambassador would do.

CHAPTER 4: Negotiate Treaty: Deliberations Don't Assume

BLAHA: The reason I think it's important to negotiate this treaty is that there are going to be unique things in there that are typically not there. Also, don't assume because it's been discussed and in the deliberations that it has been moved to the accommodations sheet. Don't assume that because they did it last year it is happening this year. If you read anything, read that accommodation sheet.

And one thing I have learned, and I do this in all my roles — oh, well, three. I don't have that many, but three — is that on the accommodations... in the deliberations, I list the accommodations. Because sometimes those sheets, they check stuff off — nobody looks at it. You need to give them... it needs to be a list... 14 things need to be generated and put in the deliberations page so it's easy. If it's embedded, they can't find it.

I work with teachers who have four minutes between classes to go to the bathroom. One of the teachers I work with, they don't have a bathroom in the portable, so she controls her intake of fluid from the time she gets up to be able to go to the bathroom. Now, come on.

You know, a lot of things break down because people are in a hurry and they're stressed, and they're trying. And so if we negotiate a good treaty where we have it listed out in a list that they can take with them, praglagistically, sometimes it's just the logistics that break things down. And I also advise you to put examples in — spell it out. Because I think we get so concise with our word crafting that when we put "preferential seating," it's meaningless. "Preferential seating" — put a colon and spell it out.

"In group work, it means this; when working one-on-one, it's this." Well, and I would do "small group," versus "large group." You know, where do you want her when she's in the auditorium? Just spell it out, because many mistakes are made unintentionally, just like in culture — in different cultures.

CHAPTER 5: Ambassador Recap

BLAHA: When you're an ambassador for your child, you're diplomatic, you are stationed in a foreign country, you negotiate a treaty, and you don't leave — you just stay there, okay?

There's also some entertaining that goes on, so I would also recommend bringing food, because, you know, they have these great embassy parties, and so, you know, I find that bringing food in helps too, okay? And on that high note — "bring food" — I wish you all a very productive day, and a great day of networking and stuff.

I think it's very powerful about bringing communities together. Every time I do these kind of things, I always go away with this new thing, and I think it's just very important and powerful to have a community together, and I thank you for letting me be part of it.

Thank you.