Won't somebody think about the children?
The first thing people ask me is "Why the name Rett Devil?" Here's the answer: all the sites about Rett Syndrome are with angels, and unlike Biblical angels who rain sulfur and visit people and suchlike, the so called "Rett angels" and other similar "[insert condition here] angels" are portrayed as passive, sitting around waiting to go to Heaven and end their suffering. Gag. Puke. Die. Collect halo.
A lot of my ideas regarding working with kids (and yes, adults too, though this is the site primarily about children. I am so not blind to the idea that these kids grow up to be adults. Not at all) are based on my work with children with apraxia, epilepsy, autism, cerebral palsy, as well as my own experience with a MECP2 mutation, autism, epilepsy, and some funky movement disorder somewhere in between.
Anyone who knows my work from Crazymeds knows that I do my research. For those of you who don't know me, check me out. As always, please know your sources!
And now, the really important question: Why do I care so much anyway? Here's the essay answer.
I just hate the way everyone is down on Rett girls. This applies to most disabilities, really, but I noticed it with Rett Syndrome in particular because RS is the only condition that makes any kind of sense in explaining my Cluster O'Stuff. I never fit into any of their standardized boxes and neither do any of these kids. As such, teachers, psychiatrists, psychologists, neurologists, occupational therapists, speech therapists, physical therapists, and a myriad of others of their ilk have no greater expectation than "will respond to her own name" in spite of the fact that they, the professional, are often too ignorant to know what an actual consistent response is!
They teach to low, if any, expectations.
The kids want more.
But if the kids have less than nothing pounded into them day after day, less than nothing is what the kids are going to start believing they are capable of.
A lot of the kids I worked with said, in their own way, "fuck it."
That's why I'm here raising hell.
What the hell happened to "Free Appropriate Public Education?"
What the hell happened to IDEA?
Why the hell is it OK for these children to be left behind?
From working with these children and being these children, including having ridden "the short bus," we here at RettDevil know that your kids can do more, and they want to do more, and they need to do more. Join me in raising some hell.
Kassiane ArchDemon Rettdevil.com
This website is part of the autism-assembly, this is a coalition of members of the autistic community who share the common goal of seeking acceptance for those on the autistic spectrum, who aim to educate about autism, and who are not seeking a cure for autism. This is part of the global autism rights movement.
