Wednesday, January 25, 2012


The first semester of college or university is a huge transition for everyone, but for a student with disabilities, it can be especially challenging. When I think back on the fall of my freshman year, I realize that the semester could have been far less stressful if only I had done one simple thing differently.  I wish that I had been open from the beginning about my diagnosis of Attention Deficit Disorder (ADD).
Although I had been diagnosed with ADD in second grade, up until this point I never really had to disclose my diagnosis to anyone.  The special education teachers in my school district advocated for my needs and accommodations.  They told all my teachers that I was on an Individualized Educational Program (IEP) and that under state and federal law, they were required to make accommodations for me in school. These accommodations included taking extended time on tests, taking my tests in a separate room so I wouldn’t be distracted by the other students, and the use of a computer for in-class essays.
As I was getting ready to apply to colleges, I learned that I wouldn’t have an IEP in college, and that I would have to speak up for myself in order to get the accommodations I needed.  I had to know the name of my diagnosis and how it affected me; and I also learned how to ask for the accommodations I had the right to under the Americans with Disabilities Act.  This process is known as self-advocacy.
I was quite anxious at the thought of disclosing my diagnosis to others. For one thing, I had never done anything like this before.  Also,  when I was first diagnosed with ADD, my parents told me that I was not supposed to tell anyone about the medication (Ritalin) that I was taking to help me pay attention.  The reason why they told me not to tell anyone was because they wanted my teachers to see how I did in school both on and off Ritalin. The doctor had told them that if my teachers didn’t know that I was on Ritalin, they would be able to give a more objective report of my behavior and progress.  At the time, however, I thought that my parents were telling me to keep my diagnosis a secret, and I came to believe that having ADD was something shameful. 
I had no problem disclosing my diagnosis to my professors, but I didn’t reveal it to my peers or classmates or the other students who lived in my dorm. I was afraid that if they knew I had ADD, they would think less of me and harass me.   I had been bullied in middle school and shunned in high school for being in special education, and I believed that my college classmates would be just as intolerant if they knew of my difference. 
I also had heard several people make jokes and comical remarks about ADD, such as, “Oh, what’s wrong with me today? I keep spacing out, maybe I have ADD,” or “Wow, Susie’s got so much energy tonight.  Looks like she forgot to take her ADD meds!”
Those jokes and comments led me to believe that the world generally viewed people with ADD and similar neurological disabilities to be inferior to others.  I believed that if I told my peers about my diagnosis, they would laugh at me and say things like, “You have what? Are you for real? You mean that you’re one of those crazy hyper freaks who need to take medication in order to function? Are you some kind of space shot, or what?” 
For most of my first semester, I didn’t tell anyone (besides professors) that I had ADD and kept it hidden. I tried to pass off as a “normal” college student; somewhat unaware that there’s really no such thing as “normal.” Now, as I look back, I realize that by hiding my diagnosis, I was not doing myself any favors. Not only was I hiding a part of myself, but the students I lived with didn’t understand why I often didn’t pay attention to them when I was talking. They thought I was being rude and tuning them out on purpose, which made them not want to socialize with me or get to know me. This made my first semester in college very lonely.
Eventually, I came to a point where I realized it was no longer wise to hide my diagnosis, and finally told my roommate that I had ADD.  She was very supportive of me and encouraged me to tell others as well.  As I worked up the courage to tell my friends that I have ADD, I was met with a variety of responses.  Some of them didn’t really know a lot about ADD and wanted to learn more about it. I saw this as a great opportunity to educate them, while practicing my self-advocacy skills.  Some people told me that they knew others with ADD, which made me realize that I wasn’t alone. 
Not one person laughed at me, called me a freak, or thought less of me once I told them I had ADD. In fact, they were all very glad that I had told them, and they appreciated my honesty.  I realize that although people sometimes make jokes about conditions such as ADD, they really don’t mean anything malicious by it.  They’re just trying to make people laugh, and fail to realize that their jokes or comments may also be hurtful to some.  All people often do foolish things without thinking about the consequences (I know I certainly have!), but this doesn’t mean that anyone hates people with ADD or any other medical condition, or views them as inferior.
 If you are a college or a high school student with a disability, I hope that you can learn from my story. Don’t be ashamed to disclose your diagnosis to your friends or roommates. There is no shame in having ADD or a learning disability, any more than having allergies or diabetes.  They are all simply medical conditions, and while they are a part of who you are; you are more than just your diagnosis. 
My advice to you would be to say something like, “Oh, just so you know, I have ADD, so if you ever see me staring into space or I act like I’m not listening to you, it’s not that I’m tuning you out on purpose.  Just speak up and let me know so I can pay attention to you.  Oh, and I also get distracted by lots of noise when I’m trying to concentrate, so when I’m studying or writing a paper, try to keep it down, okay?  I’ll try to do my part by putting on headphones to drown out the noise, but I’m just asking you to do your part as well, okay?”
This is just an example, and of course, it should be altered for your specific needs and conditions.  Substitute “ADD” with the name of your diagnosis, and your symptoms and modifications as needed.  If you are still in high school, perhaps you could sit down with your special education teacher and/or your parents and prepare something similar to say.  Go over it a few times if you want. Maybe write it down if you find it to be helpful.
 Ultimately, it is your decision who you choose to tell and who not to tell.  I have discovered that the more open you are about your diagnosis, the more you will come to accept it as a totally natural part of yourself that in no way diminishes your worth as a person.
   - Authored by Becky Rizoli

Monday, January 23, 2012

A Short History of Nearly Everything FCSN

Following the passage of Massachusetts’ landmark special education law, Chapter 766, in 1972, the group of parents who had helped advocate for the law’s passage formed the organization that became the Federation for Children with Special Needs, opening their doors in Boston in 1974.  They sought to help parents get the most out of the new Massachusetts inclusive education laws. Through the years, with the advent of national laws, the ADA and more, the Federation has evolved to fit the changing needs of children with special needs throughout Massachusetts. They reached out to parents in other states with NECTAS, held national conferences and produced materials in other languages. Meanwhile, they adapted to the changing technologies, building interactive websites, social networking pages and professional videos to provide information for families all over the world.

As FCSN evolves—grows up, in a way—so do the children it served. They become young adults with voices and opinions of their own. They learn what they need to be successful in spite of the challenges presented to them by the able-bodied world.

I, and the others who will be contributing to this blog, are those children. We haven’t all been served directly by FCSN, but we’ve all encountered the world of disability in our own way. We’ve combated obstacles, faced setbacks, experienced joy. Often our views differ from our parents and the others around us, even though they helped shape our perspective, because we now have a solid grasp of what matters to us.

We look forward to sharing all of that with you.

   - Authored by Chelsey Blair Kendig