Special Education Law Blog

Illinois Taking a Strong Stand Against Disability Discrimination during COVID Pandemic

Illinois lags in so many ways but for once I am proud to be an Illinoisan. They have taken a strong stance against disability discrimination at this time of COVID. Still have much to worry about but perhaps this statement of policy will help my son and others who are so vulnerable even on a good day.

Arts Of Life: A Place of Creativity and Belonging

It is hard to believe that for nearly the last 6 years my son has been a participant in an amazing program called Arts of Life at the Glenview, Illinois campus. This program has given real meaning to my son's life and an outlet for his creativity,  a place to belong and be social. He has been repeatedly recognized for his leadership and his artistry at gallery showings and through other events. Our family could not be more proud.

However, until recently I had no idea about the foundation upon which Arts of Life had been established and the dream that brought this organization into existence. The Chicago campus just celebrated its 20 year anniversary and the Glenview campus its 10 year anniversary. The following videos showing the history of Arts of Life are beautiful and inspiring, at a time when we could all use some inspiration and beauty. I hope that after you see these videos, you will realize again how much people with disabilities can accomplish when the community comes together under solid leadership with a vision for success.

 

A is for Artist, B is for Belief by Lori Miller Fox

Milestones; what are they? We hear about them from the moment our children are diagnosed, for some, born. For most of us, they're not even mile"stones"; they're pebbles, fragments, grains of sand, achievements so small, so tiny, so minuscule that only we notice them. And we keep them to ourselves, afraid some "professional" "paraprofessional," "pseudoprofessional," or interfering busybody might discount them into oblivion. 

I myself,  have given credence to too many naysayers, too often, for too much. I've wallowed in the aftermath of the dream-stealers, driven to sitting in the corner with a can of Reddi Whip, jar of fudge, half-gallon of low-fat ice cream, a serving spoon, and no bowl, recalling the compilation of shortfalls, failures, and stagnations, silently crumbling. I have been robbed of the "bragging rights" so richly enjoyed by parents of the Gymboree, beauty pageant, geniuses, only to be replaced by a pity party award, from a contest I refuse to enter.   

Raising a child with a disability can be fraught with seemingly endless periods of hopelessness. You bargain away abilities, offering them up to the Universe, in exchange for some other certainty, only to realize there is no certainty in disability -- except for one: individuals with disabilities don't fit the mold. And because they don't, school staff, career counselors and even parents, oftentimes give up all hope of pointing them toward a happy, successful and fulfilling life. More importantly however, it is because individuals with disabilities are individuals, they should be seen, treated, and encouraged as such. Paths should fit the individual, and measures of success should be uniquely calibrated. 

This weekend, I hit a milestone of my own;  I experienced what it was like to be proud of my son. Pure pride! Not the kind of pride mixed with an apology, nor the kind of pride you need to over-explain, or over-justify, for an outsider to even try to pretend to validate, but the kind of pride with which I'd never expected my family and I would be blessed. It is because of this experience, and in hopes of inspiring other parents, especially those at the beginning of their journey, or wallowing at the local Dairy Queen, that I wanted to share my steadfast belief that we need to pound their outdated mainstream, traditional, milestones into rubble, and create non-conventional pillars of achievement of our own.

My son, now 25 years old, along with other highly-talented, edge-pushing, opinion-changing artists with disabilities, received recognition for  his art in an exhibit at the Ukrainian Institute of Modern Art. The exhibit, entitled A is for Artist, is not a "cotton balls and glue" "good job, Buddy," kind of art show. It is a legitimate display of artistic talent that validates just one of the alternate paths to success that individuals with disabilities are not often told they can take. 

Twenty-five years ago, I would never have envisioned that my son would one day have a career, as an artist or otherwise. I feared there was no valued place in society to which he could aspire. And certainly, no persons other than those in his immediate family who would celebrate his contribution to any community. Yet, to my glorious delight, a young woman at the exhibit opening, said the most beautiful, eye-opening, reality-changing words I'd ever heard: "I'm a fan of your son's work." If that's not a reason to change anyone's belief-system toward people with disabilities, I don't know what is.

I have to thank The Arts of Life, a studio for artists with disabilities, for breaking all the rules; for seeing artists as artists, and measuring success as success. And especially for demonstrating that all people are different, but the right to hopes and dreams is universal. 

I admit, I am not always a cup half-full kind of person; nor a half-empty either. In all honesty, most of the time, my cup's bone-dry. However, today my hope runneth over. So I wish the best for you and your family. And wherever you are on your journey, please lick your wounds and your spoon, and when you're ready, put one foot, or crutch, or wheel, in front of the other, trusting there will be a fork in the road that takes your child on his or her path -- and hopefully that path will be handicap accessible.

A is for Artist will be open at the Ukrainian Institute of Modern Art in Chicago through November 26.  It is an inspiring, uplifting, validating experience, one which you will never forget. 

 

 My son Cole and me with one of his three paintings in the foreground.

Another of Cole's paintings above our the heads of our proud family.

Self-Employment for Persons with Disabilities

Our recent series of articles on the employment rates and work challenges experienced by persons with disabilities paid only a glancing look at perhaps one of the most viable employment options for persons with disabilities—that of self-employment.  According to the US Census Bureau, people with disabilities are almost twice as likely to be self-employed as persons without disabilities (14.7% compared to 8%).  Although the challenges of creating and sustaining a small business may seem daunting to most of us, self-employment actually can make sound sense for many workers with disabilities. It really needs to be part of the discussion in the "transistion process" albeit typically it is not.

Lessons on Internet Safety In the Wake of Sandy Hook by Marilyn Green Rebnord

The internet is a wondrous strange place for the parents of a child with special needs.  With the click of a mouse, parents can research information, locate specialists, learn about medical treatment and educational options, and perhaps most importantly of all, end their isolation.  All at once, parents can locate a community of other parents struggling with the same issues with which they are grappling.  Whether a child’s needs are severe or mild, parents may find much more effective and sanity-saving support from virtual strangers than they can from well-meaning pediatricians, grandparents, or friends.

David's Story of Running to Victory by Matt Prohaska

I have reproduced this moving and inspiring story with permission. I loved this story and hope you find it as meaningful as I did.

When I decided to join the cross country team as a junior, I was already bracing for the worst. I had endured countless tales of brutal training, injuries, and endless races in the mud, reducing even the toughest legs to Jell-O. In spite of this,I quickly realized that the true essence of the sport has nothing to do with a footrace. It does, however, have a great deal to do with David.

Overcoming My Difference By Isabelle Fiona Fox

The following is the heartfelt wisdom and pathos from my own daughter. She is a beautiful, wonderful person who has had to face the challenges of being a sibling to a brother with special needs and the internal identity struggles of being adopted from China. We are all a work in progress, but her essay below captures in poignant terms her thoughts about her "difference."

Well, if you had to ask, a difference that I have had to overcome was my family. Being adopted kind of bothered me, and my brother has spastic cerebral palsy and epilepsy. I know being unique and different is good, but this to me was VERY unusual. I mean how many people do you know have a family of an adopted daughter from China, and a son with a disability? Just as I thought, I may be the first. As you continue to read you may find yourself asking question about your own family. Just know your family is something you should appreciate and enhance.

Educating Students with High Functioning ASD: Part 2- A Personal Story by Marilyn Green Rebnord

In doing research on finding appropriate placements for students with either high-functioning autism or Asperger’s syndrome, I got side tracked by a little jewel of an article that had appeared in a magazine published by the National Education Association.  Titled “Square Pegs:  Kids with Asperger Syndrome are Hoping You’ll Help Them Find a Place in the Classroom that Fits Just Fine,” the article quotes Lucas, a young man with Asperger’s who had just graduated high school.  According to Lucas, “You’ve heard people say we don’t want to be square pegs in round holes, we want to be square pegs in square holes.  To me that means we don’t need to be fixed.  We’re not broken people.  We just need to be understood.” What Lucas is asking for—understanding--is what is essential to ensure a successful placement for the child with high-functioning autism or Asperger’s.

 Teachers who are willing to go the proverbial extra mile may discover that children on the spectrum can contribute enormously to their classrooms.  These children can shine brightly with a teacher who appreciates who they are and shows classmates by example how to treat the child with autism or Asperger’s with respect.   Children who are placed with rigid, top-down disciplinarians are probably not going to do so well.  Everyone—the child, the teacher, the principal, and the family—are going to be miserable.  And some children simply cannot have their needs met in a mainstream classroom. 

Documentaries Accurately Portray Disability-Related Issues

Although there have been recent complaints that both actors and characters with disabilities are underrepresented on television, two excellent documentaries about disabilities have aired in the past year.  Journey into Dyslexia, which appeared on HBO in May of 2011, profiles students and adults who have dyslexia.  According to the HBO web page, many of the adult professionals who struggled to learn in school now consider their dyslexia a gift and a defining reason for their successes.   Critics called the straightforward interviews with the persons with dyslexia, including children, the most powerful part of the documentary, which was made by Academy-award winning filmmakers Alan and Susan Raymond.  Among those interviewed are a professor at Johns Hopkins University, inventors, entrepreneurs, and consumer advocate Erin Brockovich.  Additionally, the HBO website accompanying this documentary is rich with information on dyslexia. Another documentary from the Sundance film festival on dyslexia is called The D Word.

An Important Milestone in a Student's Life by Marilyn Green-Rebnord

Some years back, The Onion, a satirical publication, announced in a headline, “Miracle of Birth Occurs for 83 Billionth Time.” At our older son’s Bar Mitzvah, my husband used this article to explain that we perhaps take for granted the milestones our children reach.  We forget that each and every birth, and each and every event in that child’s life, is unique and special.  Each bris, each first communion, each first tooth, each first day of kindergarten are all miraculous.  We’ve somehow lost our wonder in the ordinariness of life.  And yet, how much greater is the miracle when it is a child who has been ill, or who has a disability, or whom for whatever reason there was doubt that he or she would reach a particular milestone?