By Adria Nassim
Many times, when I talk to parents of teens and young adults with disabilities, they ask me what it took for me to live independently. I am not a parent, clinician, or a practitioner, so I share my own experience. My parents set very high, but realistic, expectations for me. Knowing full well my limitations, my parents still held me to the standards they set for me.
So, my answer to parents and young adults is the earlier you begin to facilitate independence, the better the outcome. My road to independent living started when I was about three years old. Practicing independence started in early childhood and continued not only through my teens, but well into adulthood. Even now, I still need assistance to live independently.
Start early with a good foundation
My parents started with simple tasks, such as putting my toys away after playtime, dressing myself as much as possible, brushing my teeth, helping to unload groceries, etc. As I grew, I assumed more responsibilities like learning to make my bed, putting away laundry, setting the table, and loading the dishwasher. As I continued improving my ability to do tasks around the house, I got more responsibilities. When we were in the grocery store, my mother would give me little “missions” (as she called them) to go find certain foods or compare prices.
Because my parents began to plan early for my transition to young adulthood, I was sent to a week-long overnight summer camp for kids and adults with developmental disabilities and chronic illness when I was 11 years old. The first year I went, I went with a good friend who also has disabilities and my mom served as the camp doctor because I was having unregulated seizures. She wanted to allow me the opportunity to start spending more time away from home, but still be there to keep an eye on things. By the following summer, my friend and I were off to camp by ourselves after my seizures were stabilized with medication. I continued going to that out-of-state summer camp until I was a junior in college, and I looked forward to it each year.
Build on strengths and tasks accomplished
In my teen years, I began to learn to do laundry on my own, manage a budget and handle money, and follow a schedule. I focused a lot on life skills as well as independent living skills. Skills such as shopping, practicing age-appropriate social skills, and learning how to read a weather forecast were consistently addressed with my parents at home. My sister and I had afternoon sitters throughout the school year and during the summers, and we were actively involved in the community with those sitters, too.
I had a lot of support with independent living skills during and after college through a specialized program for young adults with autism and learning disabilities. I participated in a private program not affiliated with Indiana University, which provided me with more opportunities to learn independent living skills, social skills, vocational development, and academic skills as well as gave me access to psychological support services. The program afforded me the opportunity to learn to do things on my own, such as getting groceries and feeling more comfortable using a debit card. I learned to develop peer relationships, work through everyday problems as they arose, and use the bus system. I was learning all those things through the guidance and help of the program.
Today, I still need some support with financial management and other tasks related to independent living such as assistance with shopping and making dinner. I require ongoing support with executive functioning skills like planning and organization. I have housekeeping come once a week.
Independent living was more than just finding a physical place to live, I also had to make sure I had the skills in place to be able to maintain a happy, safe, and meaningful life. It has taken a long time, but today, I am happy with my living situation, and I am proud that people always enjoy coming over to my place. A lot of my friends say my apartment is super clean and organized, and that makes it fun to hang out there.
Molding independence doesn’t look the same for everyone
Independent living looks different for each person, and I have shared mine, but I think it’s also worth pointing out that if your young adult child or loved one does not live fully independently, this does not mean you have failed them as a parent. In fact, most young people with developmental disabilities that I know, even those with higher levels of cognition and independence, do not live without some level of support day to day. When you consider independent living and developmental disability, it may first be helpful to consider what are your loved one’s current abilities, understanding of personal safety, and judgment both alone and when with others in the community.
If you are parenting younger children, then begin or continue to give them the opportunity to practice independence. When finding a place for me to live, my parents planned for transition to adulthood beginning from a young age. It is a long journey that definitely takes a lot of planning and preparation, but in the end the journey to adulthood can be worth it.
I hope your loved one can find a place they enjoy coming home to, and especially, I hope they are happy.