A Brave Boy Named Bill

Me and Bill in January

Me and Bill in January

 

Last week, I mentioned a student who would miss our recital because he would be having surgery to remove a suspicious mass. The final diagnosis came today … that student, Bill, does have cancer but the doctors are sure they caught it early, say he only needs two rounds of chemo and are confident of a complete cure.

Hearing this news takes a little of the sting away … at least it will just be two treatments, at least he will recover completely. Thank you to all of you who reached out to me after the last post, expressing your support of our organization, our students, our volunteers and the families who have suffered tremendous losses this year.

I’ve been working on two other posts for this week – a recap of our gloriously amazing recital on Saturday afternoon and another on our “Next Step” in an attempt to improve special education in our community – and was feeling pressured to finish them because the week is getting away from me.

And then, Bill’s dad told me a story today that I asked his permission to share with you, so the other posts will have to wait because this story made everyone at Merrimack Hall smile and “ugly cry” at the same time.

Bill has been in Project UP for three years and is an exuberant, enthusiastic and fantastic dancer. He can shred a mean air guitar riff, is a great partner when you want to do the shag and has deftly portrayed characters as different as Huck Finn and Danny Zuko in productions and dance competitions. He is always smiling, has never met a stranger and a hug from Bill … well, a hug from Bill can make even the worst day suddenly become the best day ever.

Last fall, I asked the Project UP parents for their permission to do something that might be considered a little too “in your face.” Hayley and Melissa wanted the kids to do a dance to that great 80’s anthem by Twisted Sister, “We’re Not Gonna Take It.”

 

Project UP performing "We're Not Gonna Take It" at NRG Dance Project in Atlanta this fall

Project UP performing “We’re Not Gonna Take It” at NRG Dance Project in Atlanta this fall

 

In a brainstorming meeting, one of us – we can’t remember exactly who it was – came up with the idea of putting the kids in t-shirts with slogans about whatever their diagnosis is. We put it to a vote and the parents unanimously agreed with our idea. We found some of the slogans through a google search and parents suggested others … imagine 42 people, ranging in age from 13 to 35, sporting ‘80’s themed hair styles, headbands and leg warmers and proudly wearing fringed t-shirts that said:

You’d be happy too, if you had an extra chromosome.

I have an extra chromosome and I’m not afraid to use it.

Am I rocking this extra chromosome, or what?

The rainbow is also a spectrum.

I have autism and I am awesome.

Don’t dis my ability!

or my personal favorite…

Normal is a dryer setting.

The dance ends with a fierce air guitar solo by the guys, with the gals jamming behind them and on the final clash of the drums, all the dancers end in a pose with their right arms extended high in the air and their fingers in the universal symbol for “Rock on, dudes!”

Each time they performed this dance, audiences responded with a standing ovation, shouts of support and usually, a lot of tears. It’s become sort of our theme song now … yes, the folks in Project UP have disabilities but it doesn’t bother them … they’re not gonna take it anymore!

They’re not gonna take being discriminated against or left out or marginalized or bullied or made fun of or … you get the picture! The dance seemed to leave the dancers feeling more empowered each time they did it.

 

Bill and Haleigh after the NYCDA Competition performance in Nashville

Bill and Haleigh after the NYCDA Competition performance in Nashville

 

So, back to Bill and his surgery last Friday. His dad said that Bill became anxious during the pre-op procedures. The nurses that were prepping him for the surgery asked Bill if he had any favorite songs that they could all sing together to help him relax.

Bill’s parents explained the “We’re Not Gonna Take It” dance and as Bill laid on the gurney, everyone started singing it. Bill marked the dance moves as best he could … he’s a great dancer but it must have been hard to get his groove on when he was attached to monitors and IV’s and laying on his back … but he worked it out!

Once in the operating room, away from his loving parents, Bill got scared again … really scared. So, one nurse started singing, “We’re Not Gonna Take It” again. And then all the other nurses started singing too. And then the anesthesiologist joined in…and then the doctors joined in … and then other technicians in the room joined in until the entire operating room was singing.

 

 

Bill performing at the holiday show

Bill performing at the holiday show

 

And Bill relaxed. And as the anesthesia began to take effect, Bill raised his arm high in the air, fingers extended into the “Rock on, dude” position and he fell peacefully asleep.

Imagine that … an operating room full of focused and competent medical professionals who have specific protocols and stringent procedures to follow … singing Twisted Sister to a young man with Down syndrome. What compassion they showed for Bill by singing his favorite song to him.

And imagine Bill, scared and confused and alone but comforted by those doctors, nurses and technicians as they sang. Imagine how powerful Bill must have felt when he reached down deep into himself and called on his faith and his courage and his inner strength.

Imagine how he expressed his strength … by raising his arm in the air and saying, not with words but just with a gesture, “Bring it on … I can do this … I’m not afraid … rock on, dudes.”

Last week, I felt defeated by loss. Saturday’s recital left me newly inspired because of the accomplishments of our students. And today, I feel proud to know a young man named Bill, who conquered his fears … and who is going to kick cancer’s butt … because he is brave and strong and faithful.

Bill is a rock star and cancer … well, Bill’s not gonna take it!

 

The State of Special Education, Part 3

empty-classroom

 

 

Your comments, your stories, your fears and worries are flooding my inbox…and what I am reading is making me angry. What I am consistently hearing is:

  1. I’m afraid to speak openly about the issues I’m having with my child’s education.
  2. The Huntsville City School administration and board either don’t have policies in place or they don’t enforce those policies with any consistency.
  3. My child’s civil rights are being violated but I’m powerless to do anything about this.

Saying that a child’s civil rights are being violated is serious business. Unfortunately, it’s what I’m hearing over and over. In less than 24 hours, I received 203 messages from you…113 of the messages came from people who reported that they were either parents or teachers…and what resonated in each of them was that we are not treating children with special needs fairly in our school system.

Wikipedia says:

“Civil rights are a class of rights that protect individuals’ freedom from infringement by governments and private organizations, and ensure one’s ability to participate in the civil and political life of the state without discrimination or repression. Civil rights include protection from discrimination on grounds such as race, gender, national origin, color, sexual orientation, ethnicity, religion or disability.”

When I compare this definition with the stories I’m hearing, it sure sounds like the Huntsville City School administrators and school board have created a system that is violating the civil rights of the 2,800 children who attend our schools. Many of the messages I received asked me for a “Call to Action” or a “Next Step” but I’m not quite there yet. I’m going to share some of the stories I’ve been hearing with you and hope that your feedback will help me formulate that action item that we can all rally around.

 

book-stack

 

I promised to protect the identity of anyone who left me a comment or sent me a message. It is interesting to me that 112 of the 113 parents and teachers who contacted me asked that I not identify them. What do people fear? Reprisals against their vulnerable children or push back from the school administration or further cuts to special education are on the top of the list.

Please read the comments that were posted directly on this blog. Here are some of the ones I received privately…send me your comments so we can figure out what a “Next Step” would look like.

Reader 1: “I’ve kept quiet as long because I’m a teacher in the Huntsville City Schools and honestly, I’m afraid of our superintendent. Other teachers I know feel the same way. We lost so many experienced and gifted teachers since he came here because they would rather give up their jobs than work for a man who shows such callous disregard for what’s best for our students. People are only focusing on the success he’s had with the budget but at whose expense? The children…especially the kids in special education. HCS is violating the rights of kids with special needs and parents have no option but to go along with it. I think a class action suit is the solution.”

Reader 2: “My child’s aide confided to me that she was told by the school that she was not to communicate anything with me…at all. She was not to tell me what happened in my child’s day, what my child ate for lunch, what my child did in OT or PT, how my child performed academically…she was not to tell me anything at all about what my child did in school. Of course, the aide continues to report what my child does each day.”

Reader 3: “Pulling children with special needs out of every school to house them in only two or three schools is illegal. First, it’s a shame because ‘typical’ students who are exposed to children with special needs learn great life lessons early on that help society later in life. The benefits of children learning and working together side by side as ‘typical’ students and ‘special education’ students is unilaterally beneficial. More importantly, however, segregating the special education population from peers is illegal. You cannot round up all the Muslims and put them in one of 2 or 3 schools. You cannot round up all the students who are on the free school breakfast and lunch programs and put them all into only 2 or 3 schools. The law does not allow rounding up any minority and placing them all into 2 or 3 schools only. Segregating special education students this way is federally prohibited.”

Reader 4: “My child’s school has been without an OT for most of the school year. The OT left and wasn’t replaced. When I ask about a replacement, I’m told that one will be hired as soon as the money is available and that it will be my responsibility to make up the OT sessions on my own, even though our IEP mandates OT as part of my child’s academic day.”

Reader 5: “My child was born in Huntsville and went to school in the city system through third grade until we were transferred last year to another state. I didn’t know there was another way to educate my child but he is now in a regular classroom with his typical peers and is thriving. In Huntsville, he was put in the resource classroom and I didn’t know I had any other options.”

Reader 6: “My child was put into the resource classroom for kindergarten. I asked why and they said it was because his IQ was lower than 59. He was never given an IQ test so I don’t know how they know what his IQ is but since he has Down syndrome, I didn’t question them.”

Reader 7: “I’ve sued the system and was able to get my child in our neighborhood school. The terms of our settlement prevent me from speaking about it so I can’t share information with other parents on how to get what they deserve. The school’s administration likes for us to sue them because then we can’t talk, they only have to redress a problem with one family and can go about business as usual. I guess other parents either don’t know their rights, don’t know they can sue or afraid to but it’s the only thing that works. It keeps everyone in the dark and keeps one family satisfied. Once we get what our child needs, we are afraid to tell other families because then they might take away our services next year and make us sue them all over again. It is exhausting.”

 

Please continue to share your experiences with me.  You can reach me at info@dreamingwithyourfeet.com.  I promise to protect your anonymity.