What is a Binga?

So a blog is a deeply personal thing; a place to pour your heart out and invite others to share in your experiences. You can cry, and laugh, and cheer - you can get mad or find a cause to believe in. But what happens when the blog you want to write is about a child? How do you weigh her privacy against sharing some of her stories so that people might empathize with her?

I've been struggling with these questions and plan to tread carefully and with her permission while bringing you to know her, so please meet Tobi; Our Little Binga. What is a Binga? We have no idea but we've been calling our youngest daughter a binga since the day she was born and this blog is for her!

Please follow us on our quest for a Service Dog for Tobi.

Monday, July 16, 2012

How do you define what's "real"?

Tobi with her little cousin.
Last night was rough. We've been having more and more of these tough nights lately and I'm seeing it as a double-edged sword. On the one hand, I'm relieved that Tobi has been able to share and open up more thanks to some gentle breakthroughs with the counselor, but on the other hand... it feels like a dam is breaking.

We've always been aware of Tobi's vivid imagination, but we always thought it was just that. A vivid imagination. Well, so what if when she's asked to write about how her summer vacation went she mixes real events with something she saw on tv. What's the big deal if she talks like something that's not real is in fact, as real as she is? Don't kids do that? We didn't think it was an abnormal amount of imagination. Imagination is awesome! Why be worried about that? Why were her teachers bringing it up excessively?

This past IEP meeting took some of my blinders off, I think. As I've said before, we've always known our little binga was a quirky ball of energy (and not necessarily healthy energy), and she's been seen for various diagnoses since she was yay-high. The word 'aspergers' has been floating around her for years. But when you actually get the diagnosis, see it on paper, read more about what it is, it's like your zipper being opened and you can't hold everything in anymore.

Tobi has learned to shade with tissue.
What's real for me, might not be real for you. What's real from the 'average' person, might be way different than what's real for my daughter. Is reality defined by what is tangible? Do you believe in what you can touch? What is faith but a belief in something you can't touch or see with your hands, but you know in your heart to be true. You can believe in Science, God, or the Invisible Pink Unicorn. Explaining why you believe is a whole lot more difficult, if not impossible.

Her tears are real. She's distraught. Tobi is holding onto me and sobbing. She actually explained it to me that one of her heart strings had been pulled. The reason was a bittersweet one and one I could only distantly understand. I like to think that I have an expressive imagination. It helps me to draw and write by giving my characters life. I put emotional investments in my creations and the creations of others that I read, write with, watch on tv. But I know that they aren't REAL in the strictest sense of the word. I know that in reality, that actor wasn't just horribly taken from the world. I know that dog was trained to limp; that a great turn of phrase and a skilled writer has made me feel a connection between me and the character I'm reading about. But I know it's not REAL.

Tobi forms strong attachments to things. Very often it's things that you and I would understand aren't real. I can tell Tobi until I'm blue in the face that the animation she just watched, the one that is making her nose stuffy and her head hurt, isn't real. It didn't really happen. But to her, Spike the dragon really is growing up and can no longer live with Twilight the unicorn. It's as real to her as can be. My saying "but, honey, you know it's not real right? it's just a cartoon" gets me the reply, "I know, but-". She may know it's a cartoon, but it's still REAL. Who am I to say it's not? I tell her Santa Claus is real, don't I...?

At the IEP meeting, we were told that Tobi talks about imaginary things as if they are really happening, as a part of her life. She combines reality with fantasy and this is how she sees the world. I find it both amazing and terrifying. As she grows older, this way of seeing the world is going to be less and less acceptable to the mainstream. How will she ground herself?

You knew this was coming, didn't you? Well, it *is* a blog about how a service dog can change our daughter's life. And this task of helping to ground Tobi in reality, is one she is going to need as she gets older. This last year of school is already proving that the kids around her are becoming less tolerant of her differences. I don't mind telling you that I am scared to death. I want my daughter to be accepted by her peers, not bullied. I want her to feel safe, not terrified. And I want her to be able to keep moving forward.

Spaghetti dinner. August 4 is coming up on us quickly and it's going to be just one of many fundraisers to help fund this service dog. I am optimistically confident that we will raise almost or near half of what we need for the $1000 deposit to the trainer. That's half way to getting a puppy picked and pictures to show Tobi. That's going to be a big step. Seeing that puppy's picture, naming it. Getting to see videos... I know we'll have so very much more to raise after that, but I think once the deposit is down, the puppy will become REAL, and the ball will gain momentum and things will really start rolling.
I found this picture this afternoon when I was looking in Tobi's sketch book for her My Little Pony drawing to scan. She didn't show it to me when she was drawing it. She made a little map key in the upper corner so that anyone seeing this would know that 'humans can't hear black speech bubbles'. This husky's thoughts say "It's okay, buddy...". Beneath the bed, amidst little hearts and flowers, are the words, "If you have a nightmare, I will be there for you..."

Please, support our efforts to help bring this husky into Tobi's life for real.

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