It Will Get Better
INNERview with Judith Wilson Burkes
YVONNE PIERRE: Please tell us a little bit about yourself, Judith.
JUDITH WILSON BURKES: My name is Judith Wilson Burkes, and first and foremost, I am a mother to two great young men; both of whom are very creative and also have what could be disabling conditions. I say that because in this family, we all deal with disabling conditions, but stay focused, and work hard to overcome challenges and reach for our goals. I am also a blogger, a disability awareness advocate, and soon-to-be founder of a local non-profit organization called Celebrate Connections. I also have a degree in IT-Visual Communications and ran a graphic design company for 10 years (1996-2006).
YVONNE: As a single parent of children with disabilities, what are your greatest challenges?
JUDITH: In the beginning, I felt my greatest challenge was keeping my sanity and staying organized. My oldest has autism and my youngest has a rare disorder called Dysautonomia/POTS. I myself, deal with visual, hearing and mobility impairments, so trying to manage everyone’s life, schedule and medical needs was very daunting. I soon realized I needed to develop a network of family, friends, neighbors and school personnel that could be part of what I called the “Success Team (ST).” The ST consisted of people I could rely on to help me get everything done within a timely fashion; especially if I needed assistance due to my own conditions.
Lately, my biggest challenges have been the continued fight to transition my young men into adulthood. Support for children with autism is finally something everyone knows about, but as these children grow up, where is the support for employment and housing? This is now on the forefront of my challenges.
YVONNE: Please share with us a little bit about your children. How old are they and what are their special needs?
JUDITH: My oldest son is 20 years old, and has been given the diagnosis of Asperger’s Syndrome, which is at the higher functioning end of the spectrum. He also has scoliosis that has stolen almost an inch of his height.
My youngest son is 16 years old, and has Dysautonomia/POTS, which is a disorder that manifests itself as a malfunctioning autonomic nervous system. Although he is considered to be in remission (no faints in over a year), we deal with residual conditions, like heart palpitations, memory loss, and chronic fatigue syndrome. He also deals with mental health issues, and has been diagnosed with dysthymia (a form of depression) and anxiety.
YVONNE: What is one thing about you that is better because of your children?
JUDITH: No one believes this now, but I was extremely shy and introverted as a child. Growing up with disabilities myself, especially hearing and visual impairments, I found it very hard to communicate and be a part of social or work events. I often felt too afraid to even voice my opinion.
Because of my children, those fears are gone. I will go to bat for my children; fire a non-performing doctor, ask to see actual test printouts, lead a transition meeting, etc. – all to get to the bottom of a problem and find solutions. Because of them, I work to start a non-profit organization to help others live fully, engaged lives regardless of their disability.
YVONNE: What inspires you and gives you hope?
JUDITH: I know this sounds corny, but my oldest son. He was born in the early 90s, before ABA therapy and the support children with autism have today. We were told to institutionalize him and that he would never graduate high school. I saw his tenacity amid all the shaking heads. And, even though there was no one believing he could do it, he graduated on time and had a 3.25 G.P.A. his final year of high school. He is now in college studying Simulation and Video Game Design, on his way to a solid Associate degree. Every day, he shows me what can be done as long as you keep believing and keep reaching for your goals. In fact, that is one of our mottos: Reach, Reach, and Reach for your goals!
YVONNE: You’re planning to start a nonprofit, could you tell us a little bit about it?
JUDITH: Celebrate Connections is a change agent committed to creating opportunities for people with disabilities to live fully, engaged lives. Through community-based events involving a cross-disability platform of volunteers, participants and already-existing organizations, Celebrate Connections will involve people with disabilities in local policy creation, political engagement, artistic and recreational expression. Our goal is for people with disabilities to have the ability to express themselves as they choose; not how someone chooses for them. Celebrate Connections also wishes to reach traditionally under-served members of the disabled community, such as Latinos, LGBT, and Teens and Young Adults.
YVONNE: What inspired you to launch your nonprofit?
JUDITH: Again, it was my oldest son. He came to me at 18 and showed me two short animated films he had created. I had no idea he even knew how to put together an animated short. After getting over my surprise and awe, he floored me again by saying he had 15 more episodes in his head. I asked myself a question right there and then. Where would my son be able to display his talent? He only had one art class during his entire educational history; in middle school. No one ever thought he could be an artist. Even now, we struggle to find internships and organizations that will support his career goals. If this is happening to my son, how many other parents and families want more options for their loved ones? How many other people with disabilities want options for themselves?
Celebrate Connections main goal is to increase the participation of people with disabilities in life, whatever they choose to do or be. We do this by putting on our own events, as well as supporting the efforts and events of other organizations to include people with disabilities in every aspect of life and human expression.
YVONNE: What is the greatest life lesson learned through your children?
JUDITH: Because I have had two children with totally different needs, I have learned the importance of family and how it can relate to the disability rights movement. In a family, everybody reaches for success according to their goals and dreams. In a family, no one is denied the right to express themselves and their talents over another family member. It is not enough that one succeed. In a family, all are supported and given the chance to excel. This is the life lesson I bring to advocacy and my future work.
Everyone should be given the rights, tools and support to succeed, regardless of their disability. Everyone should be given the chance to express their experience of human expression. And, when one community member with a disability succeeds, we all do.
YVONNE: What message of hope would you give other parents?
JUDITH: As a mother of a 20 year old young man with autism, I vividly remember the evaluations, tests, medicine trials and school meetings that punctuated my son’s life. I also remember the fear when it took years to diagnose my second son. From the moment the diagnosis is given to you, and for many days (months) after that, there will be so many emotions overwhelming you. I tell you, hold on. It will get better. We are living in a time of great medical research and advancement as well as community support through the Internet. You and your child will get through those early days.
Pace yourself, create a network of support and love your child. If you are dealing with a rare disorder, connect with other families that understand the unique stressors and needs you face. Coming out of the dark days of the 90s when it comes to autism, I can tell you that you will make it if you educate yourself, support yourself and your child. No one will ever know them better than you, and that is your strength.
JUDITH: My love for the community of people with disabilities grew out of my personal experience as well as that of my children. It is personal, and will always remain so. As I said earlier, I see all of us as a family. I welcome comments, suggestions, and support in my efforts, as well as I will give the same to others. Please feel free to connect with me online and off.
Judith Wilson Burkes
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