Sacrificing the Many for the Few

I have struggled with this topic for many many years.  A little background.  My Mother is a key player in fighting for the rights of children with special education needs.  If you have a child with special needs, you can thank her.

Before my sister was hit by a car, the "special" kids rode on the short bus.  They all went to the same school.  My neighborhood had 5 elementary schools.  All the "special" kids went to one of them.  They put them in a room and they made sure nobody hurt anybody else or themselves.  It didn't matter if you had down's syndrome, were dyslexic, ADD wasn't invented then, maybe you had muscular dystrophy.  You were going in that room.  And you were staying in that room.  And you weren't going to accomplish anything.

And then a car hit my sister.  Nothing was ever the same.  I didn't see my Mother much after that.  For a long time she was in the hospital with my sister.  Then she was fighting the school, the district, the state and finally the federal government.  To help my sister.  To give her a chance.  An opportunity.  They said my sister would never walk again, but she did.  They said she would never run and play and grow like other children, but she did.  They said she couldn't learn like other kids, she would never finish high school.  The kid who would never grow got a soccer scholarship.  The kid who couldn't learn, well, we call her Dr. now.   It was a willpower thing.  Tell my baby sister she couldn't do something and she was going to damn well prove you wrong.  And she has.  Every "professional" who clicked their tongue, shook their head and told my Mother to not expect very much, how's it feel?  She did it.  You can call her Dr. now, she's got a PhD.  Screw you.

I'm proud of my sister.  She's accomplished far more than I have and I was the one they were betting on.  I can't do what she's done.  I don't have the will, or the strength.  Just potential that hasn't measured up to much.

What I do have is a son.  With special needs.

At first they told me he would not live to see 7.  Then they told me, well, he will live, but he will be blind one day.  (long back story on that!)  As my son is fond of saying "Blind?!  Big deal, I can handle that with my eyes closed!  It's not like I'm gonna die."  It's a thing with us now.  Blind we can handle, death is not an option.  (Thank you, Mr. William Goldman, we have learned from you well!)

He needed to start Braille lessons, walking with a cane, using a keyboard without a mouse.  It was going to be a very busy 2nd grade.  I went to my first IEP meeting knowing what I wanted and with a secret weapon.  My mother.  The child's rights advocate!

The meeting began, I laid out my wishes, I did not introduce my Mother.  She sat quietly, letting her daughter navigate the waters.  They politely declined my requests.  Why did he need Braille?  He is fully sighted, mobility, technology, surely not.  I persisted, they said no.  I pushed, they said no.  I got tired.  If I had been alone I would have given up.  Instead I introduced my Mother.  This is what happened:
Me:  Maybe it's time for an introduction.  This is my son's advocate (insert my Mother's name here).
The Principal's head went down.
The District's Special Ed Director's head went down.
The School's Special Ed Counselor said: "It's very nice to meet you..."  At this point the District's Special Ed Director put her hand on the school's counselor and said "Just say yes."

That was the end of opposition.  This is the power of my Mother's name.  If you are of a certain age group, you are afraid, if you are young, you are simply foolish.   You see, my son is not blind, but he MAY be.  I know from reading that people who lose their vision lose a minimum of a year of their life learning new skills.  I was not going to let my son go into the dark with no preparation.  He was not going to lose a year.  He would be as ready as possible.  My Mother's name made that happen.  They never knew he was also her Grandson.  They never knew anything.

As the meeting progressed things got out of hand.  This is what I wanted:
1.  My son to learn Braille, just in case
2.  My son to learn to use a cane, just in case
3.  My son to learn how to use technology unsighted, just in case

What they offered was all of this, in the mainstream.  Are you kidding me?  Do you know how loud a Braille writer is?  How is an instructor supposed to teach him while a teacher is teaching a whole class?

Ok, let me amend what I wanted.  I wanted 1, 2 and 3 and I didn't want them in a regular class.  He needed separate time to learn this.  He had no right to infringe on the other pupils learning and how was he supposed to learn to read Braille if he's supposed to learn how to do long division at the same time?  No.  This would not happen during class.

This was my first lesson.  Not every child should be in the mainstream.  Not when it means sacrificing the other 20 kids in the classroom.  (Firsthand experience here, remind me to tell you about being the class parent in a school with 31 kids in a first grade classroom.  Another blog, another day)

My lesson continued as we discussed Gym.  My son cannot play sports where there is a risk of a blow to the head.  (So much for my dreams of raising a pro hockey player but that's another blog to file away for another day too.)  The teaching team laid out a plan to redesign the class for his safety.  It was tempting.  I really didn't want him to be left out, to be put aside, to be....different.  But he is.  I loved dodge ball. Why should 20 other kids miss out because mine can't play?  No.  I put it on my 8 year old son.  He was there, at the meeting.  I asked him what he thought.  He said "I can't play that game.  But I can keep score."  We developed a system from then on.  The gym class played, and it was his job to find a way to participate.  And he did.  He never kept score.  He learned the rules and officiated football, soccer, baseball.  You name it, he was an awesome referee or ump!

You see, this is the thing, the world is not going to bend for my son.  He's going to have to find a way to navigate.  It's not right for his needs to cause everyone else to change.  He's the minority.  He's got to find a way in.  It hurts, I hate it.  I want him to be like everyone else.  But he's not.  And no matter how much I fight, he's not going to be.  I can't dumb everything down for him, because then I'm dumbing all the other children.  That's what the school offered me that day.  If he had had his Braille lessons in the mainstream it would have slowed everyone else up, don't believe me, try learning Braille, it's not easy!  And how is that fair to everyone else?  We talk about "being fair".  "Oh, it's not fair if this one or that one wins, they should just have fun!"  Yeah, try telling that to a manager as he's getting ready to fire you for nonperformance!  Or how about "children should not feel badly about themselves, we have to buck up everyone's confidence!"  Uh Huh, yeah, try that at your next evaluation when you're not mid to top performing!  Fair?  "Life isn't fair, Bill.  We tell our children that it is, but it's a terrible thing to do.  It's not only a lie, it's a cruel lie.  Life is not fair, and it never has been, and it's never going to be."  or, if you don't prefer the literary  "Life isn't fair and anybody who says differently is selling something."  (Thank you,  Mr. William Goldman, wish I had a Miss Roginski or an Edith Neisser, at a minimum I had you and the flu and a Daddy who loved your book!)  Point is, life is not fair, better get your child ready for it.

And I'm not always going to be here.  I don't know when that's going to happen, but if I don't teach him to navigate for himself, what will he do without me?  I want to be here for a very long time, but we get no guarantees.  You see, I'm not raising a child.  I'm raising an adult.