I have always loved my independence. As a 23 year old with a physical disability and a wheelchair, I am completely dependent on others for daily living needs such as getting dressed, cooking, showering, and using the restroom. I can talk and type on my computer or phone independently, but there are times when even that is difficult for me and I need assistance. In middle school, I went on all the class trips including the nine day eighth grade east coast trip. My parents stayed within an hour in case of an emergency, but I had my helper at the time with me and I did not want to see them because no one else saw their parents for the duration of the trip. I wanted to be independent.

When I was correctly diagnosed with my condition in high school, there was no longer a looming fear that I would have a medical crisis. As a family, we then began researching colleges both in and out of town. I grew up in San Diego and I only applied to schools in California, but I adamantly continued to want to go away for college. I ended up attending Whittier College, a small, four-year liberal arts college about 20 minutes southeast of downtown Los Angeles. I lived on campus in a dorm all four years and had Supportive Living Services where I would have an agency send helpers to assist me with my daily living needs. I graduated in May 2019 with my Bachelor’s degree.

The city of Whittier is about one hour and 45 minutes north (without any traffic) of where my parents live in San Diego. This distance was absolutely perfect because I felt far enough away so I could live my own life, yet close enough to home so my parents could just drive up if necessary. As graduation approached, my parents gave me a choice to either come home to San Diego and live with them or find an apartment and live independently. I have a very good relationship with both my mom and my dad and they would have been supportive no matter what, but I wanted to remain independent so I chose the latter option they gave me.

In order to keep the same case manager provided to me by The Regional Center that I had throughout college, I had to stay within a certain zip code when apartment hunting. This limited my search to Whittier and its immediate neighboring cities. Luckily, however, my mom found an apartment located in Whittier so I already knew the area and was completely comfortable with it. After graduation, I went home to San Diego for two weeks before moving into my apartment in Whittier on June 1st.

Transitioning from college into the real world is stressful for anyone. When the person has medical and social services, such as therapies and Social Security, on top of trying to find employment, it is even more stressful. My parents gave me a year to get everything situated and March 2020 started off looking like the first month where everything was finally situated. I was happy with my helpers. I was about to start aquatic therapy again for the first time since high school. I was going to speech therapy on a regular basis. I had all my necessary medications. I was about to begin looking for a job. I was settled.

I came home to San Diego on March 13th because my doctor told my mom it would be a good idea due to the amount of helpers coming in and out of my apartment and the fear of possible COVID-19 infection among them. For someone with a weak immune system and who also requires assistance like me, self-quarantining at home with my parents is the best option. For someone with limited independence as is, moving back in with my parents for the foreseeable future is a step backwards on the road to becoming an independent and self-sufficient adult.

This piece is a guest post contributed by Lilly Grossman, ADCY5-related dyskinesia patient and advocate.

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