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.

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.

Sunday, July 8, 2012

Weighing privacy vs. the desire to educate

Tobi & her Grammy fly a kite.
Writing has always been an outlet for me and yet I sit here now, trying to pluck the words out of my head to type on the screen. I have a story to tell but how do I do it without violating the privacy of my child? She depends on me to protect her and in my telling of her story, I can educate others on her need and bring her a measure of safety that I can't always be there to provide. But how much do I share without crossing the line? How do I know when to stop to protect her privacy? The simple answer is "ask Tobi". The more complicated answer is "I don't know".

 Tobi loves that she has a blog. She loves to see posts go up with her name in them; loves to know that people are reading about her, and that I'm sharing her pictures. So often Tobi feels like the only thing she can do well is Art and needs a lot of reassuring. Art is the one thing she knows, loves, is always doing, and the most important thing she thinks she has going for her. Her art is truly amazing but so is she and it can be a struggle to help her see that.

 I have waxed and waned over various helpful organizations, trying to decide if our cause is 'just' enough, or if I should be telling even one more place about my daughter. The internet can be a scary place, but so can it be a wonderful and helping tool. How do I decide when I'm giving away too much information? Is it worth the risk for the outcome we are trying to achieve? I struggle constantly with this. I can't sleep at night anymore, my own anxiety shoots through the roof and my personal battles with OCD intensify. And when I'm antsy, I want to DO something.

Have you heard of the Spoon Theory? If you have not, I encourage you to read this insightful article, then you will understand when I say I thought I had way more spoons than I did the other day. It cost me for the next 4 days. Being stuck in bed propped up with pillows gave me a lot of time to consider this dilemma Tobi's daddy and I face.

 How much information is too much information? I guess I will have to weigh this each and every time I write about Tobi, or contact an organization or a business; every time I share the link to this blog and make one more phone call on behalf of my daughter. There is no right way to answer this question, as I have come to accept. I just have to keep doing what I feel is right for Tobi and if that means sharing or not, towing the line or throwing it away, I will always do my best to respect her privacy while also sharing her story.

With this in mind, I shared my wish for Tobi at Wish Upon a Hero, and I thank Chris & K9 Bronx for directing me there.

Tuesday, July 3, 2012

Benefit Dinner, August 4 - Mark your Calendars!

We will be holding a Spaghetti Dinner on Saturday, August 4th, at the Masonic Hall (5 High St., above Jesse's Gym) in Buckfield, ME from 5pm - 7pm to help raise funds for a service dog for Tobi!

We will be raffling off a $50 gift card to Flagship Cinemas, and we will have a 50/50 jar available (you buy a ticket/s for $1.00; at the end of the event, you and Paws4Tobi will split the pot 50-50). If you would like to donate food items or pledge items that can be auctioned off in a later fundraiser, please email me, Rebecca, at feendrachen@yahoo.com ; Puzzle Pieces for Tobi will also be available.

Mark your calendars and plan to attend. Bring your appetites and show your support! =D

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