Still here!

We're still here, still doing awesome :)

I'm loving my job, my coworkers, everything... The Hubs still loves his store, all his people are wonderful... Kids are still doing awesome at school.

CMS, Blythe and our 'team'.

Three of the most awesome things in my life right now.

CMS is AWESOME.

Our last school district, JT was in a self-contained classroom, with mainstreaming in circle time.

Right before we moved (3.5 months into the school year) they suggested that JT would do well in specials with the general ed class (PE, art, music).

So that's all we had when we came here. About an hour a day of mainstreaming.

So when we got here, they immediately followed his IEP. Mainstreaming for circle and specials. Then called, said he needed more (they called ME, crazy awesome!).

So within a few weeks, JT was also mainstreamed for lunch and recess as well as specials and circle.

Then a week before Christmas break, they called an IEP and said, he needs more. So off to math he went with the general ed class.

Then Tuesday, we met again. Again, they said more. So now he's mainstreamed for social studies/science.

In fact, the ONLY thing he's NOT mainstreamed for is reading/language arts. And the way they were talking, it sounds like that's coming soon, too.

He's doing fantastic. No aide. Some extra attention from some fabulous teachers and class aides, and some added patience from everyone. But you can tell they all truly like JT, and want him to succeed.

I give CMS an A+.

Seriously, this is a dream come true.

Naive.

That is the single word I would have used to describe myself prior to the CHOP/Amelia fiasco came to light.

Naive.

While so many have come out in support of Amelia, there are some who have voiced their opinions that people like Amelia, people with disabilities, aren't worth it.

An article on Huffington Post (sorry, I refuse to link to it, because it distresses me greatly) completely misses the point of Amelia not needing to be on a wait list, but goes on about how people with disabilities should not be on waitlists for organs, because how upsetting would that be that a disabled person got that kidney when someone's beloved aunt didn't get one.

I had no idea. No. Freaking. Idea. Shock is an understatement.

And I wonder... Where is the line that decides who is deserving and who is not? Are we saying that only certain disabilities are undeserving? ADHD? Autism? CP? Down's? Dyslexia? Bipolar? Schizophrenia? Depression?

And here's my observation: these people seem to want to not include those who can't speak for themselves. They seem to target those who can't fight back, labeling their lives as 'not worth living'. Not worth saving. Better off dead.

If you have EVER met a person who cannot speak, you know this is a ridiculous assumption. Non-verbal people live lives much like our own: happy moments, sad moments, and everything in between. The difference is they face more challenges.

And I struggle, because I don't know how to reach these people. To show them that disabled people are people just like us. And I worry that they are unreachable. And I am terrified that if there are this many people speaking up in support of such an atrocious point of view, that many more lie in the woodworks, agreeing in silence.

And my ONLY prayer is that in my life, I can change this just a little. Maybe, if each of us touched by disability can change it just a little, people will start to see the value in those that are different.

How does this happen?

Today, several of the blogs I follow featured this article:
Brick Walls

Go and read it. No, really. Go read it. You will have to read it to believe it. It's about a little girl who is cognitively impaired (MR) that needs a kidney transplant to survive.

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

“Yes. This is hard for me, you know.”

How, in this day and age, is someone denied a life-saving transplant SOLELY because they are cognitively impaired (mentally retarded)? HOW?!?!!

I read this, on one of my favorite blogs, and Elizabeth Aquino sums it all up for me.

A life's worth is not determined because someone is or isn't cognitively or developmentally or physically disabled. JT is not less because he has autism. Because that's exactly what these doctors are saying. That a disability makes you LESS THAN. That your life is not worth saving, not worth living because you are disabled. That you don't matter.

I encourage you to sign the Change.org petition that has been set up in response to Children’s Hospital of Philadelphia and their refusal of life-saving treatment of Amelia.

Transcript about JT's future.

JT and I had this conversation tonight... sort of blew my mind :)

Me: JT, when you grow up, do you want to live with mommy or move out?
JT: Move out.
Me: Are you going to get married?
JT: Yes.
Me: What's her name?
JT: Ashrita.
Me: Will you have babies?
JT: Yes.
Me: How many?
JT: One.
Me: A boy or a girl?
JT: A boy.
Me: What will you name him?
JT: Nookie.
Me: What about pets? Will you have pets?
JT: Yes.
Me: What kind?
JT: I gonna have a dog.
Me: What will you name your dog?
JT: Two.
Me: Will Two be a big dog or little dog?
JT: A little dog.


Me: That's so cool, JT!

Someone special.

Today, I opened up my Google Reader to find this story about a girl who won an iPad for her brother, who is autistic.

"Her 14-year-old brother Andrew has autism, and iPads have many applications that are helpful for learning. He is in Grade 10 at the same school.

"My brother is struggling in school, so I'm hoping that we can find good applications on there that would hopefully help him," Tricia says. "Right now his teachers have been coming to my parents and saying, 'I don't know if he'll be able to pass this, he's kinda not paying attention in class.' But the problem is that my brother is very visual. A lot of people don't understand that's the reason he's not paying attention - and they're not giving him the help he needs. I'm hoping that with the iPad, we can find something that will help the teachers learn how to teach him better.""

In this world, how many siblings would do that? Invest time in a competition with an awesome electronic prize (the most highly sought after 'toy', without a doubt), worth hundreds of dollars... without for a moment thinking it would be for themselves.

Then I read about Miss Minnesota Natalie Davis, who is up for Miss America this year. Her platform? Autism. Because her brother is autistic.

She blogs about her brother:
My brother Trevor has an Autism Spectrum Disorder (ASD) called Asperger’s Syndrome. My passion for autism stems from my personal connection to the condition. First and foremost, I serve as a supportive sister. I have been Trevor’s swimming teacher, tutor, coach, advocate and best friend.

Her experiences with her brother have lead her to create social skills programs in her hometown for other children. From the article: "Trevor’s struggle to make friends and his success in doing so after enrolling in a social skills class inspired me to found Awesome Club, a social skills program for special needs children that meets weekly in the Northfield School District, near where I attend St. Olaf College. I wrote a program proposal, met with the district’s autism specialist, special education teachers and superintendent, and solicited volunteers from my college. Since its inception, Awesome Club has experienced tremendous growth. It began with four students and four volunteers. Four years later, Awesome Club now serves over 30 special needs students at two different schools."

How amazing is that?!

I see Audrey all over these girls. She is truly JT's best friend, she is his biggest supporter. She sat through every therapy session with her brother, sometimes taking his hands in hers to force him to do signs so he would get what she knew he wanted. She copied the therapists after they would leave, using all kinds of toys and games to entice him to just play with her. She constantly puts him first, even though she's only 7.

Someone special.

Today, I opened up my Google Reader to find this story about a girl who won an iPad for her brother, who is autistic.

"Her 14-year-old brother Andrew has autism, and iPads have many applications that are helpful for learning. He is in Grade 10 at the same school.

"My brother is struggling in school, so I'm hoping that we can find good applications on there that would hopefully help him," Tricia says. "Right now his teachers have been coming to my parents and saying, 'I don't know if he'll be able to pass this, he's kinda not paying attention in class.' But the problem is that my brother is very visual. A lot of people don't understand that's the reason he's not paying attention - and they're not giving him the help he needs. I'm hoping that with the iPad, we can find something that will help the teachers learn how to teach him better.""

In this world, how many siblings would do that? Invest time in a competition with an awesome electronic prize (the most highly sought after 'toy', without a doubt), worth hundreds of dollars... without for a moment thinking it would be for themselves.

Then I read about Miss Minnesota Natalie Davis, who is up for Miss America this year. Her platform? Autism. Because her brother is autistic.

She blogs about her brother:
My brother Trevor has an Autism Spectrum Disorder (ASD) called Asperger’s Syndrome. My passion for autism stems from my personal connection to the condition. First and foremost, I serve as a supportive sister. I have been Trevor’s swimming teacher, tutor, coach, advocate and best friend.

Her experiences with her brother have lead her to create social skills programs in her hometown for other children. From the article: "Trevor’s struggle to make friends and his success in doing so after enrolling in a social skills class inspired me to found Awesome Club, a social skills program for special needs children that meets weekly in the Northfield School District, near where I attend St. Olaf College. I wrote a program proposal, met with the district’s autism specialist, special education teachers and superintendent, and solicited volunteers from my college. Since its inception, Awesome Club has experienced tremendous growth. It began with four students and four volunteers. Four years later, Awesome Club now serves over 30 special needs students at two different schools."

How amazing is that?!

I see Audrey all over these girls. She is truly JT's best friend, she is his biggest supporter. She sat through every therapy session with her brother, sometimes taking his hands in hers to force him to do signs so he would get what she knew he wanted. She copied the therapists after they would leave, using all kinds of toys and games to entice him to just play with her. She constantly puts him first, even though she's only 7.

2012 Resolutions

It's that time of year again... *Sigh*

So, 2012 resolutions, in no particular order...

*Lose weight
*Get in shape
*Learn ASL. Found an online resource - HOORAY!!!

Those are my top 3. Determined to complete them in 2012...

Here's to an awesome New Year filled with new hope and excitement...

So far ours is going great - kids had an awesome day despite still recovering from being sick. :)