Oops, We Did It Again

Perry Meridian Middle School in Indianapolis and RISE Special Services have done it again. The story found here at channel 6's website charges that teachers have once again used bad methods to correct good kids. There are better ways to correct behavior, but the Powers That Be don't seem to know it.

Documentation. Documentation. Documentation. To change a placement for a student or start an intervention of any kind, a family needs to be able to produce raw data on that student. In the absence of data, the school can be forced to comply with the request. Within the townships, there seems to be a standing policy to avoid documentation of behaviors. Why? Because a more restrictive environment is costly? Perhaps. It could be laziness. It could be inattention to detail; but, whatever the cause, it's pervasive.

The Director of Special Services has repeatedly denied the consideration of cost at case conference committees discussing placement. He has also discussed at length the 20,000.00 per child cost for sending students to RISE Learning Center in Perry Township. When requested, parents have been told on many occasions that the 20k price tag cannot be, or simply has not been, itemized to determine what the facility truly costs line by line. Some parents charge that it shouldn't be that high. The cost of a satellite classroom is a comparable 7,000.00, and GenEd settings cost even less.

School staff are blowing the whistle in all the townships, telling others that they have been told RLC is not an option for new students. Preschoolers are directed to the least restrictive setting automatically, however, no new students are assigned to the comprehensive intervention classrooms each year. As a parent, I can be my own source on that point. My son's class does not grow. I'd be overjoyed at that fact, if so many kids didn't pop up in bad placements every year. Putting a child in a less restrictive environment should be based on data that is routinely not done in the four townships. I believe some of this is cost cutting, but some of it is something else.

What does a separate facility do for students? Some will tell you they promote discrimination as surely as any segregated school ever did for African-American students. Some say it allows peers to avoid contact with disabled students and sets them up for prejudice. That could be considered true, if general education settings weren't appropriate for verbal, high functioning individuals. Children who need less intervention should ALWAYS be placed in these regular classes. Some would call it warehousing. That is a matter of opinion. I would call a bad placement with insufficient services warehousing, and through no fault of the schools that is exactly what is happening. They just aren't set up for the severely disabled.

What happens at RLC that is so different? Focused attention on behaviors and concentrated effort to make a child as academically and socially abled as possible with the intention of dialing back the intervention is the goal of that facility, which is one of two in the whole state. The goal should be inclusion, but including students without skills makes little sense. Satellite classes are understaffed and under trained in Rise Special Services Program which brings us right back to where this article started. OOPS.

We did it again.

Rubber, meet the Road. Road, . . .

Image via Wikipedia

Brick Buddies is over for the year. It was a long haul getting from here to there. There is still a ways to go. Brick Buddies is our RISE Learning Center LEGO club, and it has students on both ends of the spectrum included. We weren't able to have peers without disabilities, but how awesome would that be, huh?

Extra-curricular events, clubs and teams are rare for children with disabilities. At least, they are here in Indianapolis. So when a friend came to me with a study about LEGO and its benefits to children on the spectrum, it seemed a good fit. The problems soon became apparent.

Problem One: You need Legos. Lots of them. My first source was Wal-mart. Go to your local store and fill out a simple form telling them what you're needing and why. They've funded us two years running. This year we also obtained some stimulus of our own for the club. That will keep us going for a while.


Problem Two: This one you will not believe, but staff were semi-resistant to the club. I'm speculating as to the cause, but I think it may be related to our habit of lowering our expectations for "those"kids. Lower goals not expectations. The fact is that autistic kids have an affinity for systems. Lego is a building system. It's the same reason so many like math.

Problem Three: RLC is a facility with students from both ends of the spectrum, and every disorder under the sun seems to occupy its halls. That makes for a problem I still haven't fully solved. High and low functioning students at the same event. One thing I've learned is that the kids can and will let you know where their talents lie. I can say with certainty that social skills training was accomplished.

To parents, I say: If you have time and ability to share, starting recreational groups for children with disabilities is the best way to go. Kids need these kinds of experiences. They need the opportunity for play, for conflict, for self-regulation. We all learn these things the same way, experience. The learning and mentally disabled need more experiences than the rest of us, not less. Whatever you do, keep your child in the game. Don't let them retreat from the world.

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Book Review: The Everyday Advocate

The Everyday Advocate hit shelves this month. It's written by Areva Martin, lawyer and mom of a child on the spectrum. There are a lot of good things to say about the number of voices out there aimed at parents, and there are a lot of bad. This book contains mainly good information. As with most of these books, it seems aimed toward those on the high end of the spectrum, or those with the most abilities. There is education to be found here, though, for any parent with a child on the spectrum.

If you have a child with a disability, you are their advocate.  You became their advocate on the day they were born. Many, many parents hesitate to take up that role because they feel they can't. Mrs. Martin captures in her first chapters that basic fact that you can, anyone can. She also lays out the map for getting there.

She devotes a lot of time to inclusion, and that's great. However, many parents with low functioning children find it easy to get discouraged when inclusion is the focus of the discussion. Don't get me wrong. The numbers are in on this and inclusion is hands down the best possible outcome. When kids are severely autistic, it becomes impractical and difficult to implement. I am not of the school that believes separate environments when appropriate are discriminating against our children, nor am I prone to think that it promotes ignorance in the general public about autism. I think the general public is prone to ignorance all on its own. I would have like to see her focus on individuals more fully in making her recommendation. One size does not fit all.

With that one proviso, I recommend this book highly.  It's concrete and complete. It's easy to read and empowering. It's full of good information and one of the books every parent should have at the ready.

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My One and ONLY Reply

Image via Wikipedia

 Hitler didn't do it, Autism did!:
The things we'll say online and how none of themwill find a cure.




The internet is a wonderful thing. Ten seconds of pushing buttons and the whole world is connected. Lately, I've looked up a few things, maybe out of morbid curiosity, on the argument to vaccinate or not to vaccinate. OMG! In internet speak, that means "What was I thinking?"

There are camps on both side of the river, and the battles rage fiercely on. There's Generation Rescue and Age of Autism, and there are skeptics found on sites like Scienceblog. There's Jenny McCarthy beating the drum, and there is the NIH and CDC waving the flag. In between, you have serious vitriol and hyperbole. Oh, Sweet Lord, the hyperbole!

On the above mentioned Science blog, I stopped to share our story. Don't ask me why. Temporarily out of my mind, I assume. Much later, I followed a link back and found the replies. For several posts, it appeared to have degenerated into actual conversation instead of the acidic shouting of words like "strawman", "Hitler" and "Babykillers". Having come to my senses,  I've decided something. Nothing about any of this really matters, and I wanted to post my response here because some of what I said bears repeating often for both camps in this little forum war to nowhere.

I actually hadn't checked on this site in some time. There isn't enough time in the day to "lurk" on a forum. My mind reels.
" Why are the trials, tribulations and questions from those of us who had our children injured by the actual diseases more trivial than those who claimed it came from the vaccine?
What makes having the disease and suffering very real consequences not as dire as yours?"
Holy crap! When did I even suggest such a thing? That is an assumption drawn from your emotional state. This is what I mean. Having reviewed this entire thread, there is no value in any of this, and those of you having petty discussion on Dachau and Hitler and whether Jenny McCarthy is a slut or D-list actress, whichever side of the argument you rally to Vac or Non-vac, are wasting time and energy. This is a personal decision made within a family.
In free societies, it should stay that way. Removing mercury from vaccines was easy. It's done for the most part. What did it hurt? Removing Pthalates and other such chemicals? What could it hurt? Are they necessary in the product? Usually not. Does any of this matter? Not a bit. It may help and it may not. Like recycling, should we do it? Again, probably.
My family, like many others, still gets up in the morning struggling with our personal choices and circumstances. Nothing said here changes any of that. Remove morality and emotion from the equation for a second, all of you. Is there a problem and is it growing?
My suspicion is that we have a genetic propensity meeting modern day diet, chemicals, etc. Does that change my son's life? Not one bit. What changes his life? Hard work, education and repetition of tasks, research (lots of it), and keeping things as simple as possible. Our bottom line is that parents have the right to parent their children and decide their medical care. Period.
We can spread balanced information. That helps. We can educate parents on the issues facing their child now. That helps. We can work to fund research into every aspect of autism and developmental disorder. That helps. But the stuff above, that doesn't help. It only hurts the hurting and frustrates the already frustrated. I'm speaking to all of you. Age of Autism included. Put your energies into the things that help, and put comments and ugliness like all this in the garbage where it truly belongs.

My experience is that there is a middle ground between name calling and silence. It's called discourse. As a society, we should all take a look at the mark we leave on the world. When we want to solve the problem, it will get solved. In the meantime, let's stop alienating everyone around us. To Quote last night's episode of Stargate Universe, Divided, "Remember, we have to live with these people tomorrow".  This is my one and only reply. Acting like children won't help our children.

We All Have Autism.

Image by Sailing "Footprints: Real to Reel" (Ronn ashore) via Flickr

In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.

 1 John iv. 18.