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.

Friday, July 27, 2012

Validation & Vindication

Our little Artist digitally paints one of her favorite subjects.
Sometimes we wonder if we're doing enough. Are we doing everything in our power for our little binga? Is it our fault that she has this condition? Are we good enough parents? I know these are the exact same kinds of questions most parents with a special needs child ask themselves. In fact, I would be worried about the parent who DIDN'T occasionally ask these questions.

For me, I have mostly accepted that my child's condition is not something I did. Mostly. I mean, if it is a question of genes, it's still my genes that are partially responsible. I can't begin to tell you the weight of guilt my husband felt when we were told that fathers especially provide the genetic contribution of Aspergers. And then we're told that girls with Aspergers are are not as prevalent as boys? Well, for him it doubled the guilt and when he's feeling guilty, I feel protective. This is NOT his fault. He didn't 'do this' to her. And then I have to accept that neither did I. Until an article shows up, or a tv show airs, that blames vaccinations for the many neurological and developmental conditions so many of our children face today.

And it's not just early childhood vaccinations that get blamed. It's the water we drink, the food that we eat, the plastic toys and bottles are made of. The list seems never ending and pummels you with all of those questions and insecurities and feelings of guilt. All over again.

Undeniably, there are environmental factors that contribute to a worsening or onset of a condition in regards to illnesses and injurious states. But when you're talking about something that's presumed to be a genetic condition, are we saying that it's the parents or the grandparents who are to blame? That something we ate when we were 2 is responsible for my daughter's aspergers? It all gets very confusing and I'm sick of the blame game. My daughter has this and that's that. The focus should be on making life wonderful for her, not on how it's all my fault.

Right. I say that now but I know someday soon I'll read another blog or catch a clip on the news that will raise those guilty feelings again and make me ask, "Did I do this?"

Yesterday evening, Tobi had her counseling appointment and we played a game. The "i" game. It was kind of fun and Tobi won and then it was time to go. As we walked out the door, Tobi was right with me. Then all of a sudden she wasn't. I heard my husband shout; the bushes were in the way so I couldn't see, and for a crushing second I knew what had happened. I felt paralyzed and rounded the bush and there was Tobi, not understanding why my husband was so upset. Tobi had run right out into the middle of the road to get to the car door on the opposite side of the sidewalk.

I remained calm on the outside; truly, my husband was scared so badly he was shaking enough for both of us. My mind supplied the desperation I felt at my physical limitations. I can't run. I can't walk fast. Stairs kill me and much of the time I cannot stand up straight, let alone walk more than a handful of steps. Tobi got away from me and there was nothing I could do. But I'll be damned if I'm not going to do everything I possibly can to get her the tools to make her safer.

We did have a little validation from Tobi's counselor. She was talking with Tobi about our quest for a service dog and she said she doesn't know any parent that has done this for their child; that we're doing something very special and putting in a lot of work because we love her. I don't know if Tobi understood but it made me want to cry. It made me feel like yes, we ARE doing the right thing. Even when I know it's right, it always helps to hear that others don't think you're a pie-in-the-sky nutjob. At least in regards to this. ;)

Next weekend is the fundraiser. I'm terrified and excited at the same time. And once this one is complete, we'll have the next one to plan, hopefully with a good experience in our pocket.

Here are some really great articles. Terrifying because it sounds just like Tobi, which frightens me because it outlines what could happen as she gets older; and this one that gives some insight into why girls are often misdiagnosed or not diagnosed until they are older, if at all.

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