Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

If I'd Known Then What I Know Now...

I have taken a lot of time recently to reflect on my life, my accomplishments, and challenges. A reflection that continues to come to mind is that I would not have had as many accomplishments had it not been for the services and support I have received throughout my life.

My support started with early childhood services at 16 months of age. Those services helped me to bridge the gap between the level I was at and that of other 16-month-old infants. I was born with spina bifida and hydrocephalus. The cerebral spinal fluid that didn’t flow correctly put pressure on areas surrounding my brain. It resulted in what is essentially a form of brain injury. The brain injury led to cognitive complications and issues with learning. This was finally formally documented much later in my life at the age of 18. At the time, I really didn’t realize the profound impact hydrocephalus would have on my life.

Instead, for years I believed what others told me: that I was unintelligent, lazy, inattentive, and that I would have to settle for less in life because I was not “smart enough.” While I am of below average intelligence, I struggle with learning and auditory processing. For years I struggled with how I felt about myself. I did not do well academically. I knew that there was something different about me, but I didn’t know what it was. At one point I let professionals convince me that I was depressed as a result of not “accepting my physical disability.” I also began to believe that I just wasn’t trying hard enough. It turned out that with learning I could be successful if the information was relayed to me in a manner that I could interpret. What I really needed was appropriate accommodations and to understand my learning disability.

Support services are an extremely important part of the transition process. They are intended to be used as a stepping stone to achieve self-sufficiency. I have seen first-hand how difficult life can be for those who choose not to utilize this support (as needed) in order to make a successful transition to adult life. As a result of support services – such as vocational rehabilitation and transition programs – and the support of my family I live a successful life. Expectations were set very high for me. There were consequences when I did not work to my potential. One thing that would have been more helpful as I made that transition to adult life would have been the belief that I had what it took to move forward. Young adults need to be better prepared to know they can succeed. I continue to stay connected to people who have been part of my support network for years. I discovered that they were not just involved because they had to be, but they are invested in whether I succeed or not. They have turned into life-long friends and my life-long support system.

Today I have much to celebrate! I have a bachelors degree in Human Services Administration, and I am pursuing a certificate in Disability Policy and Services at the University of Minnesota. I’m planning on getting my masters degree in public policy, and I have worked at the Institute on Community Integration as a community program associate for six years. I own a home, am not on financial assistance, and contribute much of my free time to a number of organizations. I have learned that life is a series of transitions. As I go through each new life transition, I am searching for tools that will help me to move forward in a positive direction. I do not look at challenges in life as mistakes, but rather as something that I need to learn from; there is value in change. Whether your disability is acquired later in life or you are born with it, acceptance is important. With acceptance though does not have to come a lowering of expectations. Expectations can be met with the right support and accommodations.

Some people whom I have met who have children and/or adult family members with disabilities tend to think that the most important thing in life is to make the person with the disability “look” typical to “fit in” and be socially accepted. They feel that accepting services and supports is not living a “typical” life. I had the support of family and friends to develop what my “normal” life would be. The challenge I find myself in is when I compare myself to others. I have to stop doing that. My “normal” and my “reality” is different than that of others my age.

I now look forward to my future challenges and accomplishments. Transitions in life will continue to come. With that will also come many more accomplishments and successful attempts at new adventures in life. I want to thank all of the support providers who believed in me.