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.