This Is My Life!
I’m sitting at work writing this article while listening to music with headphones on. The song currently playing is Billy Joel’s “My Life. ”I have always understood this song to be about a rebellious adolescent on the cusp of adulthood who wants to take control of his life rather than let his parents make all the decisions for him. For generations, the sentiments expressed in this song have been celebrated by youth and have made parents cringe.
As a parent or guardian, , you have undoubtedly also shuddered at the thought of your child becoming a defiant teenager, then eventually an adult with his own life. If your child has special needs, that thought can be even more intimidating.
It goes without saying that a person with special needs deserves to have as much control over her own life as any person does. At the same time, though, it can be especially daunting, especially if you’ve made all the choices for your child since birth. However, it is essential that she knows to advocate for herself if she is to become an independent and successful adult.
When your children are still young and still under your care, you can start to prepare them for adult life by teaching them about self-advocacy. It is never too early for children to start learning about themselves, their disabilities and how to advocate for themselves; the sooner they learn, the better.
My Self-Advocacy Story
I first learned about self-advocacy when I was a high school student getting ready to look at colleges. Since I have attention deficit hyperactivity disorder (ADHD) and learning disabilities, I had been on an Individualized Education Program (IEP) since elementary school. I was told that once I graduated high school, my IEP would expire and I would have to advocate for myself to get the services and accommodations I needed.
All colleges are required by the Americans with Disabilities Act (ADA) to provide reasonable accommodations for students with disabilities. However, some colleges are a better match for an individual’s specific needs than others.
My special education teacher told me that when I visited colleges, admissions officers would be interviewing me, but I should also be interviewing them to see if they would be a good fit for me and my needs. She told me that I should do the talking rather than let my parents take the lead – good practice for self-advocacy.
At college, I was effectively able to advocate for myself by talking to my professors and explaining the accommodations I needed. Upon enrollment, I had to provide documentation from my doctor certifying that I had a diagnosed medical condition and therefore was eligible for accommodations under the ADA. For instance, I took exams untimed and in a separate room so that I would not be distracted by other students finishing the tests before me.
Thanks to my self-advocacy, I was able to do very well in college academically. I also got involved in a variety of activities and clubs on campus and made wonderful friends I’m still close with to this day. In addition, I encountered some helpful and inspiring professors who encouraged me to make the most of my gifts.
I graduated in four years with a 3.16 GPA, but the most important lesson I learned in college was that I am a strong, resilient, independent woman capable of overcoming adversity.
Read the rest of Rebecca's story on the next page!&pagebreaking&
Since I’d become successful despite my obstacles, I decided to use my experiences to educate others about the education and transition process. That is why I applied for a job at the Federation for Children with Special Needs. The Federation is a nonprofit agency that serves families of children with special needs and the professionals who work with them throughout the state of Massachusetts. The Federation offers a wide variety of services, including workshops, information, referral, training and advocacy. I felt that my experience would be a valuable resource to the families that the Federation serves.
I mentioned at the beginning of this article that I am listening to music as I write this article. One might think that listening to music would be too distracting for a person with ADHD; however, the opposite is often true. Doctors have discovered that when people with ADHD listen to music, it stimulates the brain and makes it easier to concentrate.
I find that listening to an up-tempo rock song with a good beat gives me an extra bolt of energy that improves my concentration and increases my productivity. In addition, wearing headphones drowns out the sounds of my co-workers that would otherwise be distracting. I explained this situation to my supervisors when I first began working at my job at the Federation for Children with Special Needs. Since they were eager for me to work as efficiently as possible, they gladly complied.
Over the years, I’ve held a variety of positions and duties at the Federation, including creating and presenting workshops for teens with special needs, creating and editing websites, writing for the Federation’s blog and contributing to its social media. Plans are currently in the works for me to create and host a social media community for youth with disabilities transitioning to adult life. This effort will be geared toward adolescents and young adults with special needs, such as autism, ADHD, learning disabilities and speech impairments. It will focus on topics like self-advocacy and self-determination, selecting a college, planning a career, tips for socialization, dealing with the changes in their lives, becoming independent and other issues. Social media is very popular among such individuals, as it removes the barriers to communication that their disabilities often present and allows them to fully socialize with peers.
In addition to my work at the Federation, I am a published author. In fact, I am the first female diagnosed with ADHD as a child to write a memoir about growing up with the disorder. The book, Distracted Girl has generated much positive feedback from readers who say my story made them realize they weren’t alone. In March 2014, I spoke about my book at the Federation’s annual conference as part of a panel moderated by the U.S. Assistant Secretary of Education Michael Yudin. The workshop was called “Achieving Dreams.” Several excerpts of my speech about self-advocacy and self-determination can be seen on my YouTube channel.
The transition from youth to adulthood is challenging and can at times seem intimidating. During these times, I think of this line from another one of Billy Joel’s songs, “You’re only human, you’re allowed to make your share of mistakes.” It’s OK to make mistakes. Learning from them will make your child a stronger person ready to face the future.