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.

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!

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

Tobi
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.

http://ourlittlebinga.blogspot.com/

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.

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.

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.

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!

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.