Rising Cost of Special Education in Minnesota

This article was in the Minneapolis Star Tribune last Sunday.  Front page.

Rising special ed cases are huge cost to Minnesota schools

I read it with quiet discomfort.  To me, it sort of implies that people with disabilities should still be institutionalized.  Maybe you'll disagree with me, but read it.  I know it's long.  This article points out several times that the kids that are costing the school districts the most money are kids who would have been put into institutions for the mentally handicapped back before the 1970s.  It leaves the reader to decide whether getting rid of the institutions was a good idea, with the obvious implication that it wasn't. 

I have this uncomfortable feeling I live in a city that thinks its schools are wasting money taking care of kids with disabilities who won't amount to anything.  I spend so much time and energy trying to create awareness that people with disabilities are influential, productive members of our society.  There are numerous examples of people who would have been raised in an institution and neglected and never realized their potential, if not for a few caring parents and educators.  Do the names Carly Fleishmann and Temple Grandin ring any bells?

The rising cost of special education is only one small aspect of how our society changed after we stopped viewing people with disabilities as lesser-than, and started to see them as equal citizens who deserve a chance to succeed.  Yes, it will cost more to educate them in public schools that are built and organized especially for children who are typically learning.  The percentage of kids in public schools who are typically learning is smaller than it used to be, and our schools and our attitudes need to catch up with our changing society.  Not every child behaves or takes in information in the same way, and we have to stop treating them like they are cookie-cutter cutouts of each other.

I find it a little irresponsible of the reporter and the Star Tribune to publish this article.  I'm afraid it'll create a backlash against kids who have disabilities that sometimes include violence.

Actually I think violence is not the right word for it.  Because "violence" would include malice.  And these kids are not malicious.  I've said it again and again.  They aren't trying to hurt anyone, they are defending themselves against a world that is completely different from what we see.  They are trying to find a way to cope with the intense, stressful, and painful things they see, hear, smell and feel every day, sometimes all day long.  The passive, predictable world that many of us live in is not the same one people with autism see around them.

Today, the notes from school say that Zack slapped a teacher across the face.  Do you have any idea how bad that makes me feel, Star Tribune?  My kid is sometimes prone to "violence."  I don't know what precipitated it, but I do know Zack didn't mean to hurt his teacher.  He loves his teachers.  I've seen him act out physically, and then I've seen his extreme remorse.  He feels terrible when he does something he knows displeases the grownups around him.  I'm hugging him extra tight tonight, knowing he had a challenging day at school.

I know my school district spends a lot more money on my disabled boys' education than on my daughter's.  I didn't choose for my family to be this way.  I didn't choose for my boys to deal with bodies and minds that don't respond or mature properly.  By the luck of the draw, I happen to parent a couple of the kids they are referring to in this article, and I find it dangerously one-sided.

Carly's Voice, Quoted

I'm halfway through my Christmas present from Aliza - Carly's Voice by Arthur Fleishmann and Carly Fleishmann.  When I read a book I relate to, I often fold over the page corners when there's a passage that especially jumps out at me.  (This is part of the reason I'm not so good with library books.)

These are some of the passages that I found particularly compelling and relatable, from the first half of the book.

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Page 83:
I saw no beauty in this condition.  Autism was a thief.  The opportunities it stole from Carly were obvious; the chance to participate, to play, to learn, to fit in.  It stole a sister from Matthew and Taryn.  It stole energy and money and patience.  It was stealing our daughter, bit by bit.  I saw no beauty, only evil.  What force of good attempts to rob a parent of the love of a child?


Page 83:
... a main tenet of ABA is to include parents in on the training so they can provide consistent direction.  Tammy and I marveled at their patience, sitting on the floor and supervising their youngsters as they put colored pegs in holes for a reward.  The mere thought of it made me yawn.  I found that the style of communicating with my child in the manner of a therapist turned me from a parent into an instructor, further distancing me from my daughter rather than bringing me closer.


Page 93:
After three or four years of ABA, it was evident that we would not have the same outcome as the family who had introduced us to it in the first place.  The rewards were meager, and yet there were rewards.  We persevered, propelled by Howard and Barb's devotion and the data provided by therapists indicating small improvements.  I came to think of us as a slow-grinding train.  I couldn't fathom our destination, but took solace in the belief that we were at least moving forward.

(This is how I ended up feeling about ABA therapy.  It didn't bring about the miraculous upheavals in behavior and communication that we were led to believe it would.  And I knew it wouldn't - I knew that they didn't just have autism - they have Fragile X.  It's in their DNA.  Nothing short of a medical, genetic miracle was going to change it.  But I listened to their statistics about how many kids who go through the ABA program go on to attend kindergarten without needing special assistance.  And a little part of me allowed the hope to creep in.  ABA was very beneficial to AJ and Zack, but they aren't among the "cured.")


Page 114:
It wasn't that I doubted Barb and Howard's veracity, but what they were telling me was as incomprehensible as learning that a relative I believed to be dead was in fact alive.


Page 118:
"Carly, type five words and I'll give you the chips," promised Barb.

A small, sly smile seemed to cross Carly's face.

"Five words," she typed.

(They were amazed at Carly's cunning ability to manipulate to get what she wanted, and her humor, once she began speaking - well, typing.  Most children, when they first start talking, are much less mature and tend to communicate simply - with one word.  Carly first communications were deep and surprisingly intelligent thoughts.  I wonder that about the boys sometimes.  If they could, would they tell us to quit the baby talk that we tend to use?  I try not to, but you tend to get on their level, and they generally only use one or two word sentences.)


Page 122:
"Are you ready to show Mom that you can spell?" Barb asked Carly.  It was early fall of 2005 and Carly had recently had her second breakthrough - typing in full sentences.

"she does not like me. She just likes my sister," Carly responded.  Her words, in some ways, were all the more powerful because her face did not show any sense of emotion.

(That is one thing autism has taught me.  I didn't realize how very much nonverbal communication entered into our understanding and appreciation of each other.  What you say carries only half the weight when your face doesn't express emotions to go along with your words.  It's why we need to add smiley faces to emails.)


Page 126:
Howard was able to cajole and convince Carly to behave in ways Tammy and I could not.  And when Carly erupted into flailing tantrums, he had the patience to whisk her away and get her refocused.  For both Tammy and me, the wailing set off internal chemical reactions that left us filled with despair.  But Howard was firm and calm and seemingly unscathed by Carly's temperament.

(I read this passage and silently bellowed to myself "YES!"  That's what it is.  That's why I can't deal with Zack when he screams.  It makes me feel something as his mom that it doesn't make other people feel.  I have a gut reaction to it that is hard for me to describe.)


Page 142:
Even small children can tell their parents when something is wrong.  But with Carly we were always guessing.  Something as simple as stomach pain or a headache had to be intuited.  Happy?  Sad?  Anxious?  Carly was never able to provide insight into what drove her actions.  Doctors would ask us if we thought she was in pain as if we had a telepathic connection - adding frustration to an already hopeless experience.

(Yes - doctors, therapists, teachers - everyone is always asking me about the boys feelings, likes and dislikes - as if I had some telepathic connection.  I wish I did.)


Page 172:
"Carly is becoming more human," Taryn said to Tammy...

(I don't think people realize how necessary communication - real, descriptive language - is to relationships.  It's hard to really know someone who can only tell you when they want "juice" or "chips" and can't ever tell you complex thoughts like "I loved lunch today," or "I felt sad today when no one would play with me."  I think Carly's sister was commenting on the fact that she was able to know her sister so much better now that she could communicate her thoughts.)

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To be continued when I finish the book......

A Window Open

*UPDATE*
11/6/12
Last week, Jeremy wrote that he had gotten his test results back and he does not, in fact, have Fragile X.  I hadn't realized he hadn't been tested and took him at his word, when he said he had both autism and Fragile X.  I don't believe he meant to deceive any of us, I think he honestly thought for sure he did have Fragile X and he assumed the test would come back positive.  I have to admit I'm disappointed, though, because if he truly had Fragile X, he would have been a priceless advocate and source of knowledge.  He still is, of course, just by being a person with autism who can voice his feelings.  But it doesn't feel as much like an open window if he doesn't have Fragile X Syndrome as well.

Remember when Aliza wanted to know what it felt like to have Fragile X?

It's so hard to understand sensory disorder and overstimulation and how it feels for our kids.   I wish every day that Zack could tell me why he screams.  I wish he could have told me last night how he felt when he bit his legs and arms.  I wish AJ could explain why he can't stay in group time at school, and why he gets up and runs off.  Bad behavior, according to the teachers.  I wonder, though.  Can he help it?  Is there something going on inside him, or in the classroom, that he just can't tolerate?

This week, a window opened up into the minds of people with Fragile X and autism.

His name is Jeremy Tolmie, and he has autism and Fragile X and has been posting and answering questions on the Facebook Fragile X page. His facebook page is at

https://www.facebook.com/jeremytolmieauthorpage?ref=stream

He also blogs, at

Living with autism and Fragile X

He was diagnosed with Aspergers as a teenager and recently received a Fragile X diagnosis as well.  He is high-functioning enough to describe to us how he sees, hears, feels, and experiences the world. How he deals with what bothers him.

He's right there on my autism hero list, alongside Temple Grandin and Carly Fleischmann. I read everything they write. I can't get enough. I don't know if it's any different, having the combo pack of Fragile X and autism together, but I'm eating up every word this guy has to say, too.

Here are some of the things he's posted:

"I have felt for a while now that I needed to tell people about me and what it is like because I keep reading about parents trying to understand and can not. But I know exactly what is going on with their kids and just want to let them know about it."

"I never let people know that I can do something till I have to do it in front of them. I learned to read when I was 5 but could not read out loud for fear of making a mistake in the pronunciation of the words even though I could read them. I was never called that but I was never called anything other then a teachers best student because i did not ask for any help ever. the first thing I got good at writing was my name also."

I see this in my boys; sometimes I catch them doing or saying something I didn't know they could do or say, and when I comment on it, they act embarrassed. When they do something right and we praise them, sometimes they burst into tears. Having lots of attention thrust upon them is very stress-inducing. There's a fine line between praising them and stressing them out. It's taken me quite awhile to figure out how to stay balanced on that line.

"I struggled with potty training till I was 13 years old. I was good at home but struggled away from home especially at school. I did not like using public washrooms I did not know who else had used them and what they had done in them. I just could not get up the nerve to ask to go to the washroom at school and that had dire consequences"

Every little kid knows there's a link between how you deal with anxiety, and going to the bathroom. Not a kid exists who hasn't needed to go, in public, and been afraid they wouldn't get there in time. Almost everyone can relate to having to use the bathroom and being self conscious about everyone knowing.

Imagine that very normal anxiety in the body of someone who feels everything times 10. For every time you have had to go to the bathroom in public and been scared you would pee your pants, the Fragile X child feels it 10 times more often and 10 times more intensely.

"I really do not like to be tickled even if it feels good it feels to overwhelming and I make it stop if it goes on for more than a minute because it is too much stimulus for me to handle. I get a quick scare if I get touched and am not expecting it and will lash out at whoever touched me. I do not mean to do it it is just instinctual and can not be stopped. It is like what would you do if some one slapped you the common response is to slap back. You probably don;t even think about it you just do it it is the same with this."

This last one really made me think. It makes me think of Zack, and how aggressive he gets when people are too close to him. Lashing out when someone makes him physically uncomfortable is instinctual - he can't help doing it, it's an impulse, like the rage you feel if someone slaps you. You can't stop the anger; it rises in response to the unexpected stimuli.

I really wish the whole world could understand these things and be tolerant of people who can't control their bodies and impulsive behaviors as well as the rest of us can.

Thanks to Carly Fleischmann

If you haven't heard of Carly Fleischmann, let me introduce you.  Watch this video.  It's almost 10 minutes long and usually I hate videos (sorry, vloggers) because they often don't get the point across quickly enough and they assume I want to see lots of things I don't, but this one?  Every single second of it is astonishing.

She's never spoken a word, verbally, but she can type.  She can express herself beautifully on a keyboard.  And she can clue the rest of us in on how it FEELS to be autistic.

I'm fascinated by the way she describes how she feels.  "When you can't sit still because your legs feel like they are on fire, or it feels like a hundred ants are crawling up your arms."

On why she bangs her head:  "Because if I don't, it feels like my body is going to explode.  It's just like when you shake a can of Coke.  If I could stop it I would, but it's not like turning a switch off.  I know what is right and wrong, but it's like I have a fight with my brain over it."

"I want something that will put out the fire."

I can't even quote the part where she talks about how much she wants to go to school with normal kids and not have them be afraid of her.  It's too heartbreaking.

She's provided a window into our childrens' souls.  For those of us who have watched our children do awkward, odd and bizarre body movements, this is like answering the greatest mystery of life.  Her words are the holy grail.

It just goes to show that our time-honored and trusted methods of determining someone's intelligence are crap.  Sometimes one's body is unable to express the intelligence inside.  Obviously she can't take an IQ test, but obviously she is very bright.

The next time you see someone flailing about, behaving in a socially unacceptable manner, and you assume they are mentally disabled -- remember this video.  Remember Carly.  And know that what you see happening to that person on the outside might have nothing to do with what's going on inside.