Everyone is Abled in His or Her own Way
Blue eyed, brown hair and a smile that can melt your heart all say who I am. Born in August, 1985, I entered this world a month premature with doctors not realizing until I was 7 months old that my delayed baby milestones were because I have agenesis of the corpus callosum (missing the bridge between both halves of my brain) as well as an extremely rare chromosomal anomaly-invdupdel(8p) syndrome-for which research is currently being done. I was diagnosed at Mayo Clinic and my mom immediately started me in five days a week OT, PT and Speech therapies back home in the Chicago area. I was progressing nicely chewing thumb size pieces of food, sitting by myself, in a gait trainer, and doing 5 signs. In February, 1995, I had a seizure and was rushed to a local hospital postictal (not seizing). The emergency room doctor didn’t care the first three words on the paramedic report said “central sleep apnea”. He went ahead and gave me 450mg of phenobarbital over 5 minutes for my little body. I was lost and life changed dramatically for me. Various machines became part of my new life but with my mom’s perseverance, I ventured forward gaining different skills. I have multiple involvements including a seizure disorder, small growth, scoliosis, hypotonia and global developmental delays.
I attended NSSED Special Education from age 3 to when I graduated high school at age 22. Growing up I went to lots of activities my siblings were doing-piano recitals, ice skating, tennis, fencing and concerts as well as community events. The only issue has always been I have a 7p.m. bedtime where I get “hooked” to medical equipment and love to stretch out. I wave my hands up and down as well as have music playing 24 hours a day (even when I sleep). No doctor can figure out what I am able to see or hear so I am legally deaf/blind. I am very tactile and enjoy touching different textures. When I get to know someone, I use my tiny hands to rub their arm.
I AM ABLED IN MY OWN WAY.
In 2016, I was acutely ill and due to many hospital mistakes I am now g-tube fed and have only 3/4ths of my left lung to breathe with.(a g-tube is a gastrostomy tube that was surgically inserted into my abdomen and delivers all my needed nutrition as well as medicines to my stomach. I eat three meals a day - just like everyone else- breakfast, lunch and dinner but nothing goes into my mouth. Since I cannot be given anything orally at all, I have a suction toothbrush as well as suction swabs to use to clean my teeth. I love holding on to the toothbrush since the vibrations from the suction machine tickle me.) Once again, I started all over with my mom and nurses helping me to overcome the new obstacles placed in my way. Each day is a new learning experience for everyone. I am thankful for the help and support I get to show others that being community based, living at home makes for the most fulfilling life.
My smile is radiant regardless of whatever medical complexities I have. I am a person first as is everyone abled in their own way. Due to many complex medical needs, I am unable to do very much without the help from nurses and family. However, we do not let my limitations stop me. Together we have created Devora’ Dream, the first incorporated microboard in Illinois. As part of the Illinois Association of Microboards and Cooperatives, a project of the Illinois Council of Developmental Disabilities, Devora’s Dream was established as a microboard to arrange services that will allow Devora and those like her to “live the life the individual wants to live.” A microboard allows an individual to have control over his or her support services and this lets Devora, her family and friends work together to determine what is best for her. It helps the focus person achieve the highest quality of life by determining the services. Devora’s Dream, Inc. is a licensed provider in the State of Illinois and servers to support and provide services to families with loved ones having rare brain disorders and are abled in their own way to see the importance of developing the unique abilities of the individual involved with the best self-directed system of support.