OUT OF PRACTICE OR THE END OF THE WORLD

When I required myself to blog everyday, I blogged everyday. Somedays I liked my blog, other days I did not like my blog. But, each day I forced myself to think beyond my daily slog and think about the issues that affected myself and my family. Now that I have allowed myself to blog less often, I am falling into the nothingness of nothing. I am wasting my time traveling around the internet, reading reviews for "Catching Fire" which, I truly would like to see, but know it will be years until I get to see it. I have to satisfy myself with clips, reviews and rotten tomatoes. No one else in my family wants to see it.

I devoured each book starring Katniss Everdeen, loving the mix of dystopian storytelling and pre-teen love and adventure. It brought together so much that is missing in the more respected (and male dominated) science fiction reading, and dystopian storytelling that are exemplified in books like the Foundation series by Isaac Asimov. A truly great read, but often emotionally empty, and solidly, yet nerdily macho, as is true of much male written science fiction. Nerdy Macho, or Nachos. I need me a bowl of Nachos!

Why are dystopian stories so engaging? Never, or rarely happy in their endings, so many women writers have brought these cataclysmic stories into my life. I have read Ursula LeGuin, Margaret Atwood, and Suzanne Collins. I just can't get enough of the end of the world. Could I turn my own life into a dystopian novel? Maybe, it is like the Matrix, and I am already in one. Reading a dystopian novel is a lot like trying to raise children. Lots of scary bureaucrats that need to keep the status quo. In my book, I will call them "teachers." Then there is the hero or heroine which in my book is "me." I may need a bit of a makeover, but, hey, it is my book and I don't have to be 5'2" in my book!  Then there is the bleak landscape, empty storefronts, box stores and dazed people that are always in a hurry. I will call that the "suburbs." Then there is the fear that comes from the trying to raise children. I will call that "fear." The fear of being a bad parent, the regret felt after yelling at your children and the never ending drudgery of living in a world where the cooking and laundry never ends. Not to mention the lack of currency. All respectable dystopian novels mess with currency, and we are in a current, currency mess.  Remember, it's not a dream. Good night!

GETTYSBURG AND DEFECTS

So, what is a defect? Does a child with a special need have a defect? While working today, I was listening to Ken Burns' (the documentarian) being interviewed on WNYC about his Gettysburg Project. He talked about a school of boys with special needs including ADHD, Dyslexia, Dysgraphia, etc., and how emotionally moving it was for all of these boys, despite their issues, to manage to memorize and recite the Gettysburg Address. That certainly is wonderful, but what shocked me is he described their issues as "defects." I looked up defect on a free online dictionary, since no one digs out the old, dusty Websters anymore, and found this definition.

DEFECT:

1. The lack of something necessary or desirable for completion or perfection; a deficiency 2. An imperfection that causes inadequacy or failure; a shortcoming. See Synonyms at blemish.

So many things are defective. My camera that can no longer open and close the lens is defective. My boiler that leaks has a defect. I need a new camera. I need to fix my boiler. I prefer not to refer to any person as having a "defect." My daughter has dyslexia. It is not a defect, but a learning difference. I can not, nor would I like to, trade in my daughter for a more perfect model. She is imperfect, as all people are, yet perfect to me, as all daughters are to their moms.

Words matter when speaking about people with learning differences. When we call a learning difference a "defect," we take away the respect of all people that are not created "perfect." So, in Ken Burns' pursuit of finding meaning for all of us in the Gettysburg address, he may want to investigate the power of language and how language can uplift some people and denigrate others. Calling a learning issue a defect denigrates a person. I'm sure Mr. Burns did not know or think about how he might hurt a population of people by saying that their learning differences are defects. The struggle of people with different abilities is reenforced when an educated man that is trying to educate, us, the people, can so forcefully forget that words matter to all people. People with disabilities prefer not to be told they have a "defect." That time has passed. Now, let us read the the Gettysburg address:

Four score and seven years ago our fathers brought forth on this continent, a new nation, conceived in Liberty, and dedicated to the proposition that all men are created equal.

Now we are engaged in a great civil war, testing whether that nation, or any nation so conceived and so dedicated, can long endure. We are met on a great battle-field of that war. We have come to dedicate a portion of that field, as a final resting place for those who here gave their lives that that nation might live. It is altogether fitting and proper that we should do this.

But, in a larger sense, we can not dedicate -- we can not consecrate -- we can not hallow -- this ground. The brave men, living and dead, who struggled here, have consecrated it, far above our poor power to add or detract. The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us -- that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion -- that we here highly resolve that these dead shall not have died in vain -- that this nation, under God, shall have a new birth of freedom -- and that government of the people, by the people, for the people, shall not perish from the earth.

IS IT TIME FOR SPRING BREAK ALREADY?

"Your name has been chosen to come to Mrs. Teacher's class spring party. The party is on April 10@ 12:30. We will send details when it gets closer. "

Seems I have just won the lottery and will be privileged to be allowed to come into my son's classroom to volunteer for a party in April. Until then, his class will remain a mystery to me. But, at least I can  share my glorious invitation to enter this sanctified room more then five months from today. What my children do each day at school remains a mystery to me. I am at the mercy of no information. My children say nothing. The teachers say nothing. And, I am happy to hear nothing. Because when you hear something, it is never something good.

Yes, for me, no news is good news.

Sometimes I dream about going into a school meeting. The teacher would bekon me from the other side of the room to sit down. I would watch her face light up when she saw me. A smile would envelop her whole face. Uplifting music would swell in the background. I would take my seat. The teacher would regale me with stories of my perfect child. Ahhh, so quiet, so smart, so industrious, so polite, an example for all children everywhere. All the teachers would whisper when I walked by. She must be the most amazing mother to have such well behaved and smart children. She must be doing something right. Yes, just a dream, but what a wonderful dream.

But, my children are not the chosen ones. They are just children, good children, but not the quiet and well behaved children. Both very active, one that is diagnosed hyperactive. I know the teachers are judging me when judging my children. The well behaved children must come from good homes with good parents and appropriate discipline. The not so well behaved children must come from difficult homes with bad parents and inappropriate discipline. If there is a special need, the parents must also have special needs. That belief system is what makes it possible for teachers and administrators to call a parent to pick up a child when they are not behaving as expected, with the burden placed heavily on the parent of a child with special needs. Just take that child away! Give them back to their underserving, bad parents. That child does not belong in my school! And so, the children with behavior issues get pushed out of the school, into a special school, and often never finish school.

I still have on my answering machine a message from the principal of my daughter's school she attended last year that says I need to come pick up my child or she will be suspended. Her crime was crying and refusing to leave the classroom. The reason: she could not do all six questions correctly. She could do five. The principal told me she had no choice but to call me. Her teachers needed to go to lunch, there was no one willing to stay with my daughter.  I received many calls from the school last year to pick my daughter up. No wonder those of us that have children with special needs grow to fear a call from the school. I have developed a Pavlovian fear response every time I hear the phone ring. First I look at the phone, like a panicked rat about to be shocked. When I see it is from the school, I begin to sweat. If I see it is not from the school, I feel the calmness that is akin to a warm bubble bath.

More kids are now diagnosed with special needs that include behavior issues. These children are entitled to a free and appropriate education (FAPE). Yet, the schools have less money to attend to those behavior issues. And too many school professionals and parents of typical kids believe, why waste money on those "bad" kids, they are just going to be criminals or be a burden to the system anyway. And, if only the parents were better at parenting there would not be any of this trouble. So, no wonder so many of us have grown to hate the school system. We didn't expect to dislike the school system, but the public school system has, like Pavlov, shocked me one too many times.

Last year, I told the school psychologist that I was blocking calls from the school. I was only joking. I only wished I could block calls from my child's school. But, one day when I forgot my phone at home, I received a reprinmanding email that I should not block calls from the school, and I needed to come get my daughter. I no longer trusted the school, the school did not trust me. And so, I leave you with an image of the perfect child, Shirley Temple. She was cute, talented, kind, polite, smart, witty, and she was a fantasy.

AN EPISODE ABOUT NOTHING

After taking a blogging break for Halloween, I have been giving my daily blog some thought. While the idea of blogging each school night of the year seemed great to me when I started this blog, I believe it is too often making me write about nothing. So, in honor of Seinfeld, I am changing my strategy. For a time, I am going to try blogging a little less often, but, I hope with the ability to write about an issue more at length then I have been able to do over the past two months. So, keep coming back. Monday is the start of a new week and Tuesday is election day. So while my daughter has four baby teeth pulled to make room for her adult teeth, we get to choose our government representatives. I wonder who will be in more pain?

THE SCHOOLS ARE ALIVE WITH THE SOUND OF MUSIC

The silence is deafening except for my son who is in the second grade singing club and is singing the 12 Days of Thanksgiving. They are remaking the Sound of Music into a live show, I'm really afraid. So far, no bad news from the school. No midday day phone calls to pick up my child. No emergency CSE meetings. No stomach aches. Is silence a good thing? Could it be I am in a Silent Movie or will I need to Silent Run. Maybe it is the Silence of the Lambs. Yes, it is too quiet. Something must be wrong or I have been watching too many movies. I haven't seen a non-animated movie since my daughter was born 12 years ago, which makes me unable to reference any movie made post-2001 that doesn't star either a princess or talking animals.  So, for now, All Quiet on the Western Front for the Quiet Man so let's Pillow Talk tomorrow when the kids have thoroughly gorged themselves on Halloween candy.

HOMEWORK ESP

Is that grade accurate and where is the homework? When I watch all the kids coming home from school, their bags are full. They and their parents complain there is no time because their child has so much homework. My child that is in the inclusion class comes home with very little homework. Now, I did ask that her homework should be modified but how do I know if my child is getting work at or near grade level? When she takes a test, is it marked on an IEP curve? It is a question that many parents with children that have IEP's ask. You try to gage where your child is on the curve as you  move closer to the thought of if and when your child will get a high school diploma. Will she be able to pass the regents. Those tests are not so far away anymore. How can I know if she will be ready?

So, when things get too stressful, I watch old movies. Does Ghostbusthers count as an old movie, or am I just getting old? Is that a gray hair?! My gray hair worries: tests, graduation, passing, failing, grading, college, no college, independence, codependence, interdependence, dependence. I wish I could see into the future.......

Janine Melnitz: Do you believe in UFOs, astral projections, mental telepathy, ESP, clairvoyance, spirit photography, telekinetic movement, full trance mediums, the Loch Ness monster and the theory of Atlantis?

Winston Zeddemore: Ah, if there's a steady paycheck in it, I'll believe anything you say.

TESTIMONY

I became a graduate from the Partners on Policy Making Class, 2013. To graduate, I needed to present testimony. This is my testimony on disability education (slightly edited).

My name is MS and I am so glad that you are here to share this special day with me, because today is my birthday. And, because it is my birthday, I will be able to make a wish tonight when I blow out my candles. I know we are supposed to keep our birthday wishes secret, but I am going to make a special exception and share my birthday wish with all of you.

Before I make my wish, I am going to tell you a story.

Back in September, I was sitting on the playground watching my son play while chatting with the other moms. We were taking part in the September ritual of comparing our children's new teachers. My child had been given the teacher with the mean reputation.  The mom next to me said the only thing that was important to her was that her children not be put in the inclusion class. I nodded, and asked her more about why she made this choice. She said she didn't want her children to think that they might become like "one of them."  I thought about my own "one of them's". My lovely, daughter who has ADHD and Dyslexia. We were so happy to have her in inclusion. In fact, that was our aspiration. But, over the years, I have met many of these moms and dads that fear being near my child and children with disabilities. These are not moms and dads that are uneducated, racist or mean, just uninformed and inexperienced. They believe that if their child is near my child, their child might catch her disease or be hurt by her. I have heard it all since no one would ever know by looking at my daughter that she has a disability. I have been told the class will go slower if children with disabilities are placed with typical kids. I have been told that the children with disabilities will bully the typical kids. I have been told that the teachers won't pay attention to the typical children because they will need to pay attention to all those kids with special needs.

Can I tell this mom that approximately 12 percent of kids in the school have IEP's and it is very likely her child is playing with "one of those" right now? Can I tell her that her children may not need inclusion now, but in the future, she may find herself in a different set of circumstances? Can I tell her that Michael Phelps, Chuck Close, Steven Spielberg and Whoopi Goldberg all have either learning, mobility or developmental disabilities and are open about their struggles. Yes, I can say all of this, but I am only reaching one person.

I am here to advocate for the mandated teaching of disability history, including programs that demystify what it means to have and live with a disability. Every school should have curriculum devoted to the history of disability and the day-to-day reality of living with a disability. They should have curriculum that teaches respect for all people including those with different abilities. They should have a curriculum that discusses inclusion in school, in work and in the community. We have come a long way in our country in moving towards a more equal society. But, it seems that equality for those of differing abilities is lagging behind the progress of other groups looking for respect and equality. We have disability law, to make those laws effective, we need disability education.

So, let me tell you my birthday wish. I want everyone here. I want everyone in my town and state to recognize my daughter as an equal member of our society. I want her neighbors to see her as a young lady, not a child to be feared. I want moms and dads around the state to want their children to be in the classroom with my daughter and with all children that enhance our world with their different abilities. I want a mom to come up to me and say, I want my child in the inclusion class. I want my child to sit next to your child. I want my child to learn from your child. My child has so much to offer.

So, let's educate, let’s inspire, let's bring the message to our schools, Teach us. Teach us to understand and respect all people that share this earth.  Let us all be part of the same community.

I want to thank everyone that has come here today to share my birthday. Please, make my wish come true. Because if my wish comes true, my daughters wish comes true. The wishes of many families come true. Everyday, someone with a disability has a birthday and someone without a disability has a birthday. Already, they have something in common.