By Guest Author: Julie J. McCoy
I have not heard back on the building proposal for Soaring Dreams Inc. yet. Therefore, I have a different story to tell.
I recently witnessed the struggles of two families attempting to provide the best suited living arrangements outside of the family home for their intellectually and developmentally disabled loved one. In one instance, a sister and her husband were caring for a brother. The other, a daughter who’d suddenly and unexpectedly lost her mother.
I recall that ah-ha moment in my life and that of my son, Nolan, when faced with the dilemma of allowing him to live away from me. My parents both had passed away within a year of one another in 2012. It was heartbreaking at best and after my grieving period I realized just how much they were my biggest supporters for my sweet disabled son. I not only lost my parents but the family I could always count on should I need a mental break. In addition to that, approximately two years after my parents passed, I realized I had no life. I was not happy. I was overwhelmed with care of my son and this stress affected my relationships – especially my relationship with my most loving and understanding husband. I was terrified that if something should happen to me, preparations were not in order for Nolan. I was heading for a nervous breakdown. That is when I had my epiphany!!!
My life was not just about me. I realized how selfish and self-centered I had become regarding Nolan’s well-being. Even though severely disabled, Nolan is an individual and shame on me for not treating him as such. My exhaustion and pity for myself affected him, as well. He became withdrawn into his even smaller world which I created. He deserved to be treated like his older brother and have his own life and friends. Besides, who wants to hang around their mother all the time! Prior to my epiphany, I thought I was the only one that could care for him, to my standards. I thought that he would never survive without my direction, love, and care. Truth be known, I was treating him as a child, not an adult. HE deserved better!! I recalled the paraphrase, “…as parents, we give our children roots but we also must give them wings.” This was a turning point in our two lives’. It was time for ME to let go. Nolan was very much ready.
My parents blessed me with an inheritance, and October 2013 I purchased a home for Nolan to live in. That was the easy part. Letting him live there without me was the difficulty. After transitioning, Nolan officially moved in June 2014. I lived with him (in his house) for a month before I was comfortable leaving him entirely. It took several months before roommates were found, CMH (Community Mental Health) was brought on board, and staff was hired. The day came when I finally had to severe the umbilical cord completely. I’ll never forget the huge smile on Nolan’s face as I was packing up to leave for good. My heart squeezed out a smile as I left, only to break into sobs once in my car and backing out the driveway. After a week of not seeing my son, experts advise to give that much separation time for adjustment, (not sure whose adjustment they were referring to) I put my house on the market and started looking for a house in Nolan’s neighborhood.
You are probably thinking, “Who does stuff like this?” As I discovered it was not that easy for me to let go. My house sold in four days but the area I was looking to buy had two houses for sale. After much angst, my (poor) husband and I settled on a home three blocks from Nolan’s house. It wasn’t the house of my dreams but it was close enough that I could walk (or crawl, if need be) to Nolan’s. I have since grown to love the house and especially the neighbors. It took an adjustment period for Nolan’s neighbors to warm up to the idea they had “those kind of people” living in their neighborhood. Some of his neighbors have warmly embraced the guys, some continue to ignore them. Regardless, Nolan and his roommates are very happy.
It has been three years and I have seen a transformation that I thought never possible. Nolan has blossomed into a warm, caring, outgoing, and conscientious adult man. He loves his home and often sees me. He has no intentions of ever moving back with me, although he does come spend the night on occasion. The other day we were out for breakfast and, of course, he orders for himself. He ordered the “Special, with his eggs over medium!!” I never knew he liked his eggs over medium. I am discovering how this move has given him the self-esteem, confidence and autonomy that I did not realize was healthy and an important step into adulthood, regardless of his disabilities. Nolan has moved quite smoothly into adulthood, as he should. I still have anxiety about the move but Nolan has proven he is like everyone else in this world. He has a huge friend base, and I couldn’t be prouder of both of us.
Letting go of a family member is always difficult. Children go off to college, take jobs in other states, get married and move out of the family home. This is a natural transition. As parents and family members, we need to remember how important it is for our disabled adult children to do the same, regardless of the severity of their disability. We should never assume that we must be the sole caretakers and they could never move on with their lives without us. They can and they should be allowed to move on with their life. Some day there may not be a choice. You do not know the outcome until you give them that opportunity. We are not going to be around to protect them forever and how reassuring it is for me to know that Nolan is safe and happy in his own home.
I am very fortunate that I was able to purchase a home. I realize most people are unable to. There are options, and if ever you have a question regarding the process of supported living arrangements, please contact me and I would be happy to walk you through this daunting topic. Remember, it is possible for anyone, regardless of the severity of their disability. You owe it to yourself and to your family member to at least inquire of this choice and give them a chance to live independently.
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Julie McCoy is the mother of an adult son with Intellectual and Developmental Disabilities. Now retired, she has worked in many different fields, and holds a Bachelor’s degree in Business with a minor in Human Resource Administration through Concordia University. She also worked as a substitute teacher, requesting Special Education classes. She is involved at the state level in an Advisory Implementation Group comprising 50 other individuals from within the state working on a mandate from the federal government called Home and Community Based Service Waiver or HCBS waiver. This waiver comprises of moving persons on Medicaid and are I/DD from specific segregated facilities to the greater community. Her goal is to establish a location that will not only serve the community, but will strengthen the abilities of, and bring recognition to, one of the most vulnerable populations in our country.