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, December 17, 2012

A Puppy is Born, Meet Mojo!

OnQ's MojoJojo GabrielOvich
Weight on Dec 14, 2012 : 2lb 4.2Oz
Born December 7th, 2012, Tobi's future Service Dog, Siberian Husky male: Mojo JoJo!

Much love and thanks to all of you who have helped us get this far. <3

Monday, November 5, 2012

In One Month...

Zombie Tobi wants your brraiins!
In one month's time, around December 2nd, Tobi's future Service Dog (she named him Mojo-Jo-Jo) will be born! Mojo's breeder and trainer (Angel of OnQ Siberians) will keep a close eye on the pups in the first weeks and decide who among them she feels would be the best match for Tobi, and then from those pups, Tobi will make her choice!! (Click here: If you're interested in seeing what the parents look like!)

We're still working on the training fee and I will give a quick update now of the last couple of months and how they have been for Tobi. I owe you!

Halloween was tons of fun for our little binga - she got to go trick-or-treating with her big sister Raina and Raina's friends, all of whom dressed up like monsters!

It hasn't all been fun since summer, though. We had to make a very important decision for Tobi and while we feel we did the right thing, we have experienced some less than enthusiastic support.

Due to Tobi's extreme difficulties with school, we chose to pull her out and begin Homeschooling her. It wasn't an easy decision and was one we'd contemplated for the last couple of years but were always talked out of for one reason or another. This last school year had been the worst yet and the closer to 5th grade we got, the scarier it was getting. For her and us. So we spent the summer weighing our options and we discussed it at length with her counselor who supports our decision as the one right for Tobi at this time.

So far, homeschooling has been excellent. It took some adjustment and getting used to on my part as well as Tobi's but here we are at the beginning of November and her nightmares have decreased, her sleep has improved so much that I almost never have to give her the melatonin now, her body tics are less frequent, she's happier, and her amount of meltdowns has greatly reduced. I love it because I can tailor her lessons around her abilities and her likes, I can go at a pace comfortable to her and she can ask as many questions as she likes, as often as she needs.

For example, Like letting her listen to bagpipe music (we love the Rogues!) while she draws and colors a map of Scotland and I make a memory review game. Included in our learning about Scotland, we talked about the Loch Ness Monster (of course!), which led to Cryptozoology, which led to a field trip to the Cryptozoology museum in Portland. =D

Another thing that has been very positive about all of this, is that if she's having a bad day, I can simply postpone the lesson without her needing to have anxiety attacks about it. She can have lessons on the weekend or during teacher workshop days but may have a weekday off. It's been a great experience so far.

I won't say that it's been perfect, obviously. We have our ups and downs, but for now, for this year at least, we made the best decision for she and us.

Tuesday, August 21, 2012

A Milestone Reached and Coming Challenges

Wow, so I know it's been awhile since I last posted but here I am now! I will tell you that the Benefit Dinner was a success, but not in the way I had imagined.

As you may know, I had made a Facebook event for the dinner, told everyone I could think of about it and asked them to share; I posted the event on three radio stations and two newspapers (I even got a call from a woman as a result who said that Autism was a subject close to her heart), and our oldest daughter posted dozens of fliers all over our town and nearby cities.

We had some amazing volunteers!! They gave their time to be there, to help set-up and clean-up, they spread the word and called friends and family, they ran out for last minute supplies, they made a ton of food, donated a raffle item... My husband and I were so incredibly touched by this group of people that it's hard to find the right words. My sister's best friend even came and set-up a scentsy booth!

So who came? Hardly anyone. We had so many beautifully set up tables and only used two for diners. It was a little disheartening, but in the end, the ones who did offer their support were the ones whose generous donations of time and yes, money, combined with the previously raised donations, that let us reach our first milestone - the puppy deposit!

I can't begin to tell you how moved we still are by all of you who have helped us get this far. All of your names are now on Puzzle Pieces for Tobi, so that she will always have this reminder of who helped her get her service dog.

Though this was only the first step, it feels like it was the most important one. We have paid the puppy deposit and Tobi's dog will be born in October or November!! This means that we have time to raise the upcoming Training Deposit, because while we have purchased a puppy to be trained, we still need to pay for the specialized training this dog will endure for the first 1 -2 years of it's life.

School begins shortly and that's causing a basketful of issues right now but slowly we're working on the next fundraiser, a Chinese Auction (thank you to those of you who pointed us in this direction!), and when I have a little more information, I will be posting here; no doubt asking if anyone has anything under the sun they might like to offer up to be raffled off. ;)

Again, I want to say a huge, hearty thank you to all of you who has helped us get this far; there is no way we could do this without you.

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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Tuesday, June 26, 2012

FB, Puzzles, Voodoo dolls and Why

-Water color painting by Tobi!-
 I'm sure you're thinking right now, "Voodoo dolls?" and wondering what that's about. So was I when Tobi came into the room asking for one the other day. I somehow didn't think it was as simple as just 'something kids say'. Prying a little deeper made us both upset.

Without going into a lot of detail that should remain private, I will say that it's a terrible feeling to have to try and find words to explain why kids might be mean to you. Why it's not going to solve anything to hurt the ones bullying you. It's even harder when your child has high-functioning autism like Aspergers. No matter how many different ways I say it, her mind just wants to rationalize and understand something that *has* no clear answer. That she sobbed like her heart was broken for two hours over something that I didn't even know was happening the whole school year makes me livid. How can I tell my daughter that striking out is wrong when I feel like doing it myself? Why had no one at her school noticed she was being bullied? Why didn't I??

Since Tobi has started counseling, we've noticed improvement in her opening up. Sadly, that also means we're learning things we had no idea about. Like depression. Tobi has always seemed to be an exuberant child. Yes, she has meltdowns and emotional ups and downs, but her overall personality has always seemed outgoing and happy. Is it possible that it's the ADHD that makes her seem so chipper? Why didn't we know she was so depressed?

With school closed for summer break, our little binga has been bouncy and happy and even able to fall asleep on her own without melatonin. Not that she sleeps as much as she should, or even restfully, but it is a small improvement that we definitely notice. I don't want her fear of this boy in her class again next year to ruin her much needed break, as her fear of math disrupted everything weeks before the 4th grade started. I had such hope for the 5th grade. The artistic kids and Tobi's 'friends' were going to be in her class, to help her transition. That was one of the goals the IEP team set out to put in place. It was supposed to be a positive thing. Now she's despairing about this one boy; obsessing if you will.

-Water color painting by Tobi!-
School will start again in two months. There's no way, even if we managed to raise the whole 6+ grand for a service dog tonight, that Tobi would have her dog before then. It can take upwards of 2 years plus to train a service dog to meet the particular needs of the person they are being trained for. This is why we are desperate to collect that first thousand dollars as fast as we can. The sooner we can put the deposit on the puppy, the sooner the trainer can select a match for Tobi and begin its training.

That first thousand dollars is a mountain we're standing at the bottom of and looking up at. It may not sound so bad - it's just a thousand dollars, right? Don't pay your mortgage for a few months; let your bills pile up; don't eat... This is the mountain we face. Tobi isn't our only child and her siblings deserve as much love and care as she does. Sometimes sacrifices have to be made by everyone in the family, but we can all only do so much without help.

So in closing this post, I wanted to let everyone know that we started a Facebook page for Tobi, but not *just* for Tobi. There are a lot of people in the same situation and they all deserve a voice. Please join us at Paws for our Cause and spread the word!

We still have many, many puzzle pieces, please consider buying one and a huge, wonderful thanks to all of you who already have, and to everyone who cared, shared and supported us thus far! You are all amazing.

Friday, June 22, 2012

Holistic Fair in Buckfield!

The Day of Healing

This Saturday is the Day of Healing. A Holistic Fair will be held from 9am to 3pm in Buckfield, ME at 251 Old Sumner Road. There will be professional hula hoopers, live music, readings, hand made jewelry, glass blowers, and all sorts of all natural products for sale.

A donation jar for Tobi's Puzzle Pieces will be at one of the all natural booths, co-run by family friend, Brianna.

It's going to be tons of fun! If you're in the area, stop by - you don't want to miss this!

Wednesday, June 20, 2012

A Plea

My husband, Tobi's dad, wrote this plea and posted it to his facebook wall. I admit to crying when I got to read it and I wanted to share it here for everyone to see. - Rebecca

by Jens Engelmann on Tuesday, June 19, 2012 at 11:03pm ·

The few of you who already know Tobi will know that she has always been, for the lack of a better word, different from other kids.

And it is so hard to explain to people why Tobi isn't 'normal'. Sometimes even her own siblings have a hard time remembering this when dealing with her.

I have a friend with an autistic son. So far he's the only one aside from my wife who could relate first-hand to all the emotions, fears, stresses and problems - dad to dad.

I will try and explain it all a little better.

Just a few weeks ago, after many years of tests and doctor appointments, visits with counselors and psychologists, we were finally informed that Tobi was positively diagnosed with Asperger's syndrome,ADD and an array of other behaviours on the autism spectrum.

But Tobi looks perfectly normal. Nothing indicates her condition until her whole body will jerk and spasm or her eyes will start twitching rapidly.

It is so difficult to try and describe just how much emotional trauma and how much suffering "looking normal" can cause a person with Asperger syndrome.

I call it suffering. I refuse to cutefy her condition by calling her an Aspy. I keep hearing and reading it and I don't like it.

At school Tobi eats her snack sitting by herself because the kids in her class think she is weird and avoid her.

Getting her onto the bus is a daily struggle. A struggle that ranges from tears to psychosomatic headaches, stomach aches and throwing up because she is afraid of going to school and the social interactions she cannot perform.

After she gets home she will literally collapse from exhaustion because it took so much out of her.

There is, of course, so much more, but I wanted to give you guys a bit of an idea before I get to the point of this post.

Tobi was able to use a computer by the age of five. Use it. Not just play kiddy games on it. Tobi is incredibly eloquent. Her teacher is amazed by the stories she writes. Tobi's art just makes my jaw drop. She has her own following on deviantart.com. But socially she's utterly lost. I have the child locks engaged in our car. Because often she'll attempt to open the door and try to take off as soon as the vehicle stops.

But she looks normal.

Since the summer break started, she's changed completely. She's relaxed, does her art, plays on her laptop, won't avoid going to bed and is incredibly easy to get along with. Compared to the usual.

She's in fourth grade now. Two more years and she'll start going to the local high school. The thought terrifies me to the core.

This has been going on for many years. And I have never mentioned it to anyone in detail (aside from Ryan) outside of family. But recently things have changed. It's like an official seal has been stamped on Tobi now that we have it on paper.

Before continue, I would like all of you to know that I am not going to ask any of you for a penny or something else outrageous. I will instead pose a challenge. It's a crap shoot and I am not expecting a miracle.

My wife has set up a blog about Tobi, that I'd like you to look at before you continue reading.


So you saw that we are trying to get her a service dog. Oh, a fundraiser!

Yes. But I am not Patrick Dempsey. I am not the old guy on TV who tells you that all little Jose needs is $12 a month to live like the Prince of Bel-Air. We aren't avid church goers nor do we have a large circle of friends (well, I don't at least...) or contacts to bored billionaires.

I work 50 hours a week minimum and I lunge at every shred of overtime I can get my hands on in order to make this happen. But a fully trained service dog runs at over $13k. That's a lot of overtime.

I want to make this work for Tobi. I always thought that a service dog is for the legally blind. But it's so much more than that. Not just "another dog".

Her doctor, for the most part, wants to up her meds but Asperger's or Autism isn't a one way street that you can cure just with just enough medication. I realize Tobi will never be normal in the sense of the average population.

But I don't want her to be lonely and I want her to be safe. And I don't want her to be medicated to the gills just to be able to tie her shoes without help.

I can hear her jabbering in the background right now and the reason I'm sitting at my computer after a 12 hour work day is because I love my kids more than anything in the world and I feel especially protective about Tobi. But I can't raise the money for a service dog by myself.

And unless you're part of an organization, fund raising is a daunting task.

So this is my challenge, my request to my 19 Facebook friends. And for what it's worth.

Share this on your wall and hopefully encourage your friends to share this as well. That's all I am asking for.

Thank you.

Monday, June 18, 2012

Puzzle Pieces for Tobi - Fundraiser!

A Puzzle for Tobi

Fundraising for her Service Dog

We've decided on our first fundraiser project! All credit for this idea goes to RC Cristner, also known as RJ's Mom, who shared this touching way to raise funds.

How it works:
Tobi received a very pretty, Glow in the Dark puzzle from her grandpa for her birthday last month. We haven't yet put it together! It's 500 pieces large.

Each puzzle piece is worth $1.00. Every person who donates a dollar for a puzzle piece, will get to have their name or the name of their choice, written on the back of the piece. When all 500 pieces have been donated, Tobi will put this puzzle together and we will glue it and frame it for her wall. That way she will always have this very pretty reminder of all of the people who helped her get her service dog.

So please, donate for as many pieces as you like, 1 or 500! For every piece, please give us a name to write on the back of it so that Tobi will always remember who you are.

For more information or ways to donate, help, or raise funds for Tobi, please contact us at feendrachen@yahoo.com - if you cannot use PayPal and would like to pay by snailmail or have another idea, again, please contact us! We're more than happy to work with you.

Thursday, June 14, 2012

Excited & Relieved!

This picture was painted digitally by Tobi not long ago and was her first attempt at realism. An incredible picture if you ask me, and so perfect for this post.

After an emotional week, a rather depressing one watching Tobi's tics grow worse and good grief, I had to have a tooth extracted because health insurance wouldn't assist me in paying for a root canal - ugh!, I had such a wonderful phone call from a trainer in IN this afternoon. By the time we finished the phone call, I was ready to fire a canon loaded with confetti! Why? Because I *know* I've found the right person to train a service dog for Tobi.

Angel of OnQ Assistance Dogs answered all of my questions; it was clear she'd trained dogs for autistic children before and has a big understanding of what these children need in a service dog. She was easy to talk to, shared stories (good and bad!) with me, recommended people she has helped, and most importantly gave me a peace of mind I desperately needed.

So now that I know who we want to go through, it's time to buckle down on the fundraising!! A huge thank you to Lindsay for her billions of fantastic ideas, and to Jeanene for ALL of her help (especially for putting me in touch with a woman who referred me to OnQ and shared some of her journey in looking for an assistance dog for her son); and another big thank you to Laura for sharing Tobi's blog and to Barb for her support. My family and I thank all of you!

Stay tuned for new posts and more information on fundraising - we have a $1,000 to raise for the puppy deposit as soon as possible so that Tobi can get a pup from the recently born litter of sibes. We've seen pictures and they are precious! If you can help us raise the puppy deposit quickly, we will thank you with all our hearts.

Saturday, June 9, 2012

Where We're At

As you can see, this blog is brand new. I've had it for about two weeks but was chewing on when I should do something with it. Last week, we sat Tobi down to talk to her about this grand idea we had. It was time.

On Monday I got a call from Tobi's teacher. They were concerned that Tobi's eye blinks and body spasms had increased again. Since the last time it had been this bad, the psych had prescribed Vyvanse - a stimulant medication for ADHD, so they thought it was a reaction to the meds. But we'd stopped giving them to her a month ago because they were making things worse. As soon as I got off the phone, I called and made an appt. with Tobi's primary care physician, as the psych in Farmington was only 'on loan' and they now have no permanent psych to take the cases.

Tuesday we received a call home from the school. Tobi had had a meltdown and was removed from two of her classes. They put me on the phone, as they sometimes will when Tobi is having a hard day, but this time they asked us to come and get her. It wasn't even 11am yet but they felt Tobi would not be able to have a productive day.

Wednesday was her doctor appt. Tobi laid down on the exam table on her belly and drew in her sketch book while we talked.We like her doctor very much. He's always been extremely good with Tobi and listening to what's going on with her and we never feel rushed. After expressing our displeasure with the last psych experience, he has decided to send us to Portland to a different psych he has far more confidence in. That could take another 8 months. In the meantime, we have to up her meds and check back with him in 4 weeks.

When we talked to Tobi about a service dog, we kind of expected the familiar reply of "ok" but what we got was a lot of questions and animated interest. We explained the kinds of things a SD could do for her and the expression on her face just made me want to cry. She was actually imagining this dog that would really help her and I get choked up every time I think about it. Explaining to her how long it would probably take to get this special dog was harder for her to understand. "Can I sleep for a year until it comes?" and "Can Munchkin be my service dog until then? Can Ronat?" She needed a great big hug then (or I did!) but her dad and I were so moved by this little talk that we knew without a shadow of doubt that we were doing the right thing in pursuing this.

So where we're at - waiting to get in with the new psych who will focus primarily on her Aspergers and having a more in-depth talk with her physician about the SD. Her counselor said it was a really cool idea, so we'll ask her to put something in writing to support us when we see her next. Started working on the application for ASDA, talking to a couple of independent trainers, and have begun working on fundraising ideas. Definitely keeping us busy!

Wednesday, June 6, 2012

Why a Service Dog? The Magic of Pika

Making your case to others about the benefit of a Service Dog isn't easy. In fact, it's downright scary. I really had no idea just how scary until we started doing some digging; started sending out feelers. I will say I was warned but I didn't quite get it. I think I'm starting to now. The best way I can think of to start off with, is by telling you about the Magic of Pika.

That's what we call it. The Magic of Pika. Pika is our 4lb. chihuahua. Tobi *really* has a love for chihuahuas. She's been obsessed with them since she was very, very young. The great big eyes, the big radar ears, the little bodies; the eternal puppy look. It was chihuahua this, chihuahua that. Her drawings, her movies, books, games, stuffed animals, pictures - everything chihuahua. Eventually, it seemed the next step. Get Tobi a chihuahua. A real one.

We already had dogs so a chi wasn't our top priority. We talked about it for three years, really, but didn't do any serious looking. Then one day, a customer came into my husband's store with her chihuahua and he started asking her about it. The woman gave him the name and contact information of the breeder who just so happened to live not so very far away. We took a chance and sure enough, his dogs had just had a litter. They sent us pictures of the 3 day old puppies and just like that, we were sold.

Since Pika has come into our lives, the change in Tobi has been dramatic and awe-inspiring. When she holds Pika, she doesn't need to hold someone else's hand - she wants to walk and tackle stairs on her own. When she cries, Pika licks her face and she calms down. At night, when she's restless in bed, as she always is, Pika's presence keeps her from rolling. When we go *anywhere*, Tobi wants Pika to come and gets upset when she can't. Tobi even started reading out loud to Pika and doing her homework with Pika in her lap. These are just a handful of ways that Pika has helped Tobi.

But Pika can't be everything to our little girl. Pika is only 4 pounds and Tobi lacks spatial awareness. She tends to be clumsy, her body movements often wild and uncontrolled. She can seem scary to such a small dog! What's more, Pika can't go to school with Tobi, she can't go to the store, or a restaurant, or a movie. And Pika can't handle the big, deep pressure hugs that Tobi sometimes needs.

The more and more I read about the benefits of service dogs for children with autism spectrum disorders and anxiety, the more convinced I am that we have to do this for Tobi. It's hard to think of ways to convince you, too, without sitting you down and gluing your eyes open and making you read everything I've found. All the advice and support and information from a dear friend of mine who uses a service dog; from people she knows who use them. From a mother who campaigned to get her ASD child a service dog of his own.

Maybe it would be easier if I listed some of the tasks that a SD could provide for Tobi? I'm not as knowledgeable about the kinds of things they can do but I tell you, it's no joke when you hear people calling service dogs super-heroes! Just look at some of the assistance they can offer - this is from the Psychiatric Service Dog Society and this is from the International Association of Assistance Dog Partners.

For Tobi, we worry endlessly about her problems sleeping and her restlessness while she is asleep. She rolls, she sits up, she sits cross-legged and bends over to put her head on the bed. She covers her face with a blanket or pillow, has rolled off the bed and bumped her head on the wall a number of times and it means I don't sleep at night for fear of something happening to her. Tobi needs help to fall asleep on school nights and often wakes at 3 or 4 in the morning and can't get back to bed. A SD would be able to sleep beside her or with a head on her chest, keeping Tobi safe at night. This alone would be no small thing.

Anxiety. Tobi is riddled with it. It works against her at school, it makes transitioning from place to place difficult, going out places hard. A SD would help ground and calm her.

Running off can be a problem, as can keeping Tobi moving. A SD would help keep Tobi tethered and more aware of her surroundings.

Frustration - a SD can alert to a meltdown before it begins and re-direct Tobi's energy.

Social Interaction - Tobi has 'friends', but no one who seeks her out. Can you imagine how sad you would feel if you didn't know why the other kids like to play together but never ask you to join? Or when you're told "something is wrong with you". Right now, some of the other kids will walk over when Tobi is drawing to see what she's doing but she always has to ask to join in play and 'plays alongside' the other kids. She eats her snack alone. A SD would give Tobi more confidence and give the other kids something to talk about with her.

In short, a best friend who goes everywhere with Tobi, does everything with Tobi, and can perform tasks to benefit Tobi in her everyday life. This is what a Service Dog would be for Tobi. This is what we're on a quest to find.

Who is Tobi?

It was late at night, early in the year 2000 and we were living in Germany. I woke up from a dream and beside me my husband was rousing from one, too. We began to talk, sleepily at first, about how we each had dreamt of a little girl. As it got stranger, we both sat up, clearly dismayed. Why had we both had a dream that same night, perhaps at the same moment, about a little girl named Tobi in a mint green dress? It seemed impossible that it could be true but then my husband and I have a really special relationship and this kind of thing happens to us. Not quite to the extent as it did that night, but then this was an extra ordinary dream of an extra ordinary girl.

Tobi was born the next year. It was unplanned and unexpected. I was even taking the birth control pill. True, I was late that month due to circumstances out of my control but when we found out we were having a baby, it was both terrifying and wonderful. Our 'happy accident' was not going to be our first child - we had two already, but this baby was going to have an age gap between her siblings of 8 and 10 years!

From the beginning, Jens and I didn't notice anything unusual about the new baby, but when my mom came to Germany to see her, she noticed that Tobi seemed extra sensitive to sensory stimuli. And since it had been a few years since Jacob had been a baby, it was hard to remember what was considered 'normal'. Add to that we didn't have many friends, I didn't speak German, and family was in the U.S. We were pretty sheltered; or rather I was; Jens is a German citizen. It was his domain. But for me, I developed agoraphobia and had little contact with anyone but Jens and the kids. There wasn't anyone on the outside looking in until we moved back to the States.

Asperger Syndrome was on the tip of many tongues in the beginning. I think initially family was treading carefully with any big words that might freak us out. We might as well have been brand new parents for all the knowledge we seemed to possess. Was Tobi hitting her milestones? Was her behavior normal? We always thought she was a little quirky but that was just Tobi. The shock that she was different came when we realized how badly our daughter's anxiety was. When we saw how it kept her from reaching milestones. And then she went to preschool.

School has been a trial for her ever since and it's only growing worse as she grows older. Today, we learned that Tobi's meds not only need increasing but will likely need several additional meds on top of the ones she's already taking. We were told it could even take years of adjustments before she gets to where school isn't so terrible that she develops eye twitches, facial grimaces, and full body shakes. We already knew this was a life-long condition but it was hard not to feel discouraged. It's hard to see Tobi suffer.

On May 22, Tobi turned 11 years old. She's had many, many evaluations, the first when she was about 5, and the next big one on the horizon. She's been working with the teachers and special education services people at her school since she started as a wee little thing, and she is currently seeing a counselor outside of school, as well. She has speech and language, comprehension and occupational therapy. She has ADHD, generalized anxiety disorder, and Aspergers. She's considered highly-functioning. She's smart and *amazing* at art and writing; you can ask her to spell any word and she can - she can read anything you give her - but she doesn't often understand what these words mean.

I'm not afraid to use the term 'autism spectrum disorder' but it seems the stigma attached to the word 'autism' is still going strong. I don't believe that Tobi should be afraid of the word; Aspergers is an autism spectrum disorder. It is what is. Tobi knows she has aspergers and we're working on helping her understand what it means. It's not bad, it's just different. Tobi knows she's different and that's ok. It doesn't make her any less special.