মঙ্গলবার, ৪ সেপ্টেম্বর, ২০১২

The Ordinary Life of an Extraordinary Girl: Educating Alex - the now


For these few weeks I am republishing the "Educating Alex" series I shared in 2009, 2010 and 2011. Since these are direct republishes there may be references to events?I wrote about during that time period. There have been challenges and growth since I began this journal, but it may be worthwhile to revisit our educational history. This is the ninth in a ten part series. The following was first published in June 2011 as an update to our high school years.

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For those of you who have followed Alex's year and my battles to incorporate inclusive opportunities in to?Alex's curriculum, you will know?I have been frustrated.? I have asked for peer groups for Alex and her peers to learn.?I have had to stay on top of the basketball coach so Alex is not excluded from playing in games. I have asked for modifications for academics?for Alex so she can participate in regular education classes, and the list goes on and on.

Sometimes I have been successful, but many times not. I do not mean to discredit the caring, skilled and passionate teachers Alex has, but rather the culture of a school district that is reactive and listens only to those who complain the loudest. For instance, I have wondered if the extra speech therapy I requested and received for Alex caused another child to receive less.

My goal is really quite simple, facilitate?situations for Alex where she is part of the high school community, where she feels welcomed and embraced for who she is, and what she has is secondary. Perhaps?I have big dreams, but why shouldn't I? Alex does.

I have worked with another Mom to create a SEAC (Special Education Advisory Council), our mission is to provide suggestions and recommendations to the School Administrators about special education improvements. As any parent of a child with special needs knows, some parts of our children's education are good and some parts can be better. As a committee, we have focused on professional development and in particular the lack of training all teachers receive in regards to students with IEPs.

I believe the administrators recognize this is an issue and is one of the many reasons I have had to battle?these past five years to?create a team philosophy of?educating Alex. However when we request these training opportunities for our teachers we are met with the following:

  • "We can't make?teachers attend training"
  • "Our principals say their teachers already know about IEPs"
  • "We don't have enough money"
And so on and so on.

Two years ago a new family moved to our valley. This family has the same issues I have, and in some ways worse. Like us they came from a school district that supported their daughter, and like us, have been disappointed and discouraged about the lack of supportive and inclusive opportunities in our High School.

However, unlike us they filed a litany of grievances against the school district. This is a time consuming and expensive process, and I am grateful this family had the time and resources to do this.

The following was in the Aspen Times on May 31.

Re-1 acknowledges discrimination, agrees to policy changes

Family hopes to 'make a difference for others with disabilities' in filing complaint

Jeanne McGovern

The Aspen Times

Aspen CO Colorado

BASALT ? When the Sakin family filed an official grievance against the Roaring Fork School District Re-1 for discrimination against their disabled child this year, they knew it wouldn't win them any friends. But the Basalt residents believed they had no other recourse in a situation they say was becoming increasingly intolerable ? and ?totally unacceptable? ? for their high school daughter.

?We did not take this action lightly,? said Sally Sakin. ?But it got to a point where something had to be done. Something had to force a change. If not for Arden, for all the other kids who are discriminated against, all the other kids who might follow in her footsteps.?

Arden will finish her junior year at Basalt High this week. She knows she won't return to a perfect environment next year, but she hopes a few things will change.

?It's been hard, very hard,? said Arden, who has cerebral palsy, an autoimmune disorder and learning disabilities but manages to keep up a full class load, participate in extracurricular activities and generally embrace life. ?But what's been happening is wrong. It is just so bad; someone had to see what was happening.?

In fact, Re-1 acknowledged six different violations against Arden, ranging from not making areas accessible for her motorized scooter to not providing physical therapy as outlined in her Individualized Education Program (IEP) to ?different treatment? by some school personnel.

As a result of these violations, the Re-1 Board of Education on May 18 agreed to a 12-point ?corrective action? plan. Among the measures set forth in the plan are several ?appropriate personnel? actions that were not made public, as well as training for district personnel at all levels ? from case managers and principals to teachers and instructional staff ? on how to comply with the law in regard to disabled students.

?The Roaring Fork School District, in conjunction with Mountain BOCES, took these allegations seriously and investigated this matter thoroughly,? Re-1 Assistant Superintendent Brad Ray said in an email statement. ?Concluding the investigation, the Board of Education adopted a resolution to address the allegations and the district is committed to upholding this agreement.


?The sensitivity and confidentiality of all parties involved in this investigation is one of our main concerns and objectives. I would like to thank all parties involved in this process and believe the outcome will be a betterment for our district as a whole.?

The Sakins, while similarly disinclined to point fingers, were clear to note that the discrimination against their daughter was widespread, and included students, parents, teachers and administrators.

?Don't get me wrong, we do have some incredible advocates in the schools,? said Sakin, adding that once the grievance was filed the district was proactive in its investigation and recommendations. ?But, by and large, the feeling we got was that it was too burdensome to accommodate Arden, even though it was required by law. And that message trickles down from the top; and, ultimately, it's the message the students get.

?There is nothing about inclusion or compassion being taught. It is just sad to realize that some people don't even recognize that they are being discriminatory.?

Arden's story

Sakin said her family, which moved to the Roaring Fork Valley two years ago, tried everything to avoid filing the complaint: ?We waited a long time and we tried very hard to be conciliatory,? explained Sakin, adding that the family hired a special education attorney but chose to file an official grievance rather than a lawsuit through the Office for Civil Rights in an effort to promote change and cooperation. ?But nothing worked, nothing changed. And while that was OK for a while, it was just one thing after another and it eventually it became too much.?

According to Sakin, ?the straw that broke the camel's back? was when Arden was essentially barred from participating in the school musical.

Arden, who is passionate about music and dance, auditioned for ?West Side Story? like dozens of other students. But within moments of being on the stage, she was essentially dismissed. No one ? from the students to the teachers to the show's organizers ? tried to accommodate or accept Arden's need to ?dance differently.?


?There was no dialog, there was no effort to try and make this work for Arden,? said Sakin, a fierce advocate not only for her daughter but for all the disabled. ?Arden wanted this so badly and she was deflated. Not because she didn't make the cut, but because she wasn't even given a real chance.?

It is a story Sakin says she's heard over and over in the local schools ? disabled kids whose needs are not being met, or whose needs are being brushed aside.

It is little consolation to Arden, who, in many ways, is just like other high schoolers. She carries a full class load, she monoskis, she volunteers in the community, she is a budding entrepreneur and she has two summer internships. And, like other high school students, she wants to fit in, to wants find her niche, wants to be a friend and have friends. It hasn't been easy.


?It's been awful. I've never been around such rude and ignorant people,? she said, sharing stories of friends from her former school and acquaintances from her globetrotting adventures. ?I've tried so hard to be positive, to make it work.

?But it just wouldn't change. I feel like I am all alone.?

Her mother agreed: ?At the end of the day, we just felt that nobody recognized how hard Arden worked, how difficult it has been. Nobody gave her the kudos she deserves.?


What happens next?

Arden accepts the fact that the result of the grievance complaint might only hurt her situation. Her parents accept this, too. But they believe the outcome is worth the risk.

And though several of the specific grievances filed in the 23-page report could not be corroborated by the school district, and were thus not found to be violations, Basalt High ? and, by default, the entire Re-1 school district ? is under the microscope.

?Our goal is to change things for people with special needs. This is a step toward that goal,? said Sakin, adding that if the corrective action plan is not followed, the family would consider further legal action. ?Now it is out there; it is public and it cannot be brushed under the rug again.?

But more than the formality of the grievance and the resulting plan, the Sakins hope they have made a small dent in the discrimination against the disabled. They hope they have opened a few eyes to what is really happening in our local schools.

?This will not specifically change life for Arden, but it could change life for people who come through these schools after her. We are hopeful that this will be the case,? Sakin said. ?And we will be watching.?

I have a few?thoughts in regards to these grievances:

First and foremost, kudos to our school district for recognizing these grievances were valid and proposing a plan of corrective measures. And secondly, why couldn't this have happened outside the law, why did it take money and a lawyer to?enact a plan for change? Where is our community, our educators and our families, why did this have to go so far? And of course, thanks to the Sakin Family for doing something we could not.

Details of corrective actions will follow as they are disclosed!

Source: http://downsyndrometeenager.blogspot.com/2012/09/educating-alex-now.html

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