Melissa: Hey! I’m excited to be here in Wisconsin visiting…
Melissa: Justin Vollmar, and his daughter Clarisa! Maybe you’re familiar with his vlogs. I’m thrilled to finally meet these two!
Melissa: When people meet you for the first time, I’m curious, what’s the most appropriate way for someone to introduce themselves to Clarisa?
Justin: If it’s the first time, never touch her head. Instead, touch one of her arms, legs or feet. By touching her there, Clarisa becomes aware that this is a new person.
Melissa: So she can feel it’s a new person, okay.
Justin: She’s sensitive to touch and smell. See how her legs are bent to hang onto my arm?
Melissa: I see…
Justin: And now she’s laughing! Feeling silly now. Now she’s not laughing.
Justin: Want to give it a shot?
Melissa: So what’s the purpose of this blanket?
Justin: It’s for being able to feel it. It’s textured, and she likes it. She likes feeling it on her face, her body.
Melissa: And she knows that this is her favorite blanket?
Justin: Yep, right.
Melissa: If she didn’t have this one, do you think she would not feel any connection to another blankets?
Melissa: But she likes this one.
Justin: With this one, she likes the smell, and she likes the feeling of it.
Justin: Let’s check out our favorite game with that.
Justin: Clarisa loves this game because of all of the sensory information it provides. She loves to play with it.
Melissa: So this is cool, it reminds me of those ball pits that were around when I was a kid, you could jump into them! Is that the same idea here?
Justin: Yep, same concept.
Melissa: And what does Clarisa do in here?
Justin: That’s a calming activity, nothing overstimulating.
Melissa: Ohh, so she relaxes in here?
Justin: Yes, she just lays in there and will pick up a ball one by one, just feeling around. I’ll show you.
Justin: It’s crucial that DeafBlind babies have a self contained area to play independently. When I place Clarisa in the ball pit, she either plays or she doesn’t. Now she’s getting more animated picking the balls up and putting them down, and she’s doing it herself. I’m not handing her anything. It’s all up to her while she’s in there, which is really important.
Melissa: When you learned Clarisa was DeafBlind at birth, what was going through your head?
Justin: I was like a hearing parent. I immediately went up to them asking if she could be cured. If there was a way to give her vision, eye implants or something. I had to stop myself and ask what I was doing. At that instant, I got what a hearing parent was going through when they had a Deaf child and wanting to have cochlear implants, that reaction. It hit me.
Justin: I am guilty of vidism. “Poor DeafBlind child. Yup, I am guilty of it. I had to change that mindset. A DeafBlind child CAN do things. Not “CAN’T.” They CAN. We have to figure out how DeafBlind people can. From day one, I went to the hospital to learn and study all I could. And now I’m into it.
Melissa: You’ve been learning.
Melissa: When will she start learning tactile sign language?
Justin: From birth. Immediately. As soon as she was born, I started signing “Milk.” With this sign, you can’t see it like this. It has to be on hand or body, so I changed it to this (see hand squeeze wrist like “milk”). I’d tap on her arm, then squeeze her wrist, “Milk”? And she’d know. For father, I sign this (tap forehead with index). It’s hard to do it with a full open hand. So I tap my forehead for “father,” and chin for “mother.” “Diaper” to touch her hips like it touches mine. We’ve been doing that since day one. And now she knows that vocabulary.
Justin: She hasn’t fully started responded in sign language yet, like saying father or mother. Because she doesn’t see it, so there’s no reason to do it. She doesn’t see people talking to each other. So communication is not a concept fully there yet for her. So she hasn’t said “milk” yet but when I do squeeze her wrist, she gets really excited and then holds her hands up.
Melissa: She knows she wants it.
Justin: I’d have to tell her to wait so I could go get it in the kitchen, and she’d get mad at me for walking away. Also, if she doesn’t want milk, she’d shake her hand like this. It’s a new invention of hers. We’ve learned that she means she doesn’t want milk. So we’ve been using tactile communication from day one.
Justin: This is called a little room. This is a self-- enclosed sensory space. It means that she can feel safe to touch whatever’s around her to explore and play. This is actually popular with blind babies all over. This was a concept conceived in Finland/Sweden, I forget where exactly. But they started that concept and now we’re doing it. You can see she’s playing.
Justin: Want to hold her?
Melissa: So this is her special chair? To play, or?
Justin: It’s a lean-back angle, instead of upright, because her genetic makeup gives her a semi-large head, so it’s hard to lift or move it around, so the body is late in growing. The chair is comfortable and helps her stay upright.
Justin: To her, she prefers to lay down all day because she doesn’t understand the concept of standing, and doesn’t see the benefits of it. So I gave her a sensory experience of a chair, and so far, she’s loved it and fits that chair well.
Melissa: She’s smiling.
Justin: On the Facebook page, you can see our philosophy, don’t pity her. Look at her, she’s a happy baby. Her world is bright and fun, and she gets to play. Is it sad, dark? No. Look at her. It’s her world. Not ours.