It was a short, ten-minute drive from the hotel to the residential facility. I maintained composure while I navigated the busy public roads, and then residential streets. I had a whole range of emotions racing through my body, mind and spirit as we pulled into the campus. This was not just a pleasure drive or a routine errand, this was a significant milestone in the life of my son and our family.
I took a deep breath as I parked the car and went to the backseat to help my new wife lead my son out of the car. I clutched his hand tight, maybe needing more support from him than he needed from me. We opened the door to step into his new life at a residential facility and day school in the middle of Kansas. He would be living here for the foreseeable future, most likely finishing his last remaining couple of high school years. Here was his new home, and when we left that day, we would be leaving him behind.
The journey here was a long and challenging one. It was not our first choice, nor a choice that myself or my son’s mom ever thought we would have to make. But the reality of our situation was one that many special needs parents are all too familiar with. For us, it was the challenge of our son’s changing behavior. Since the beginning of his Sophomore year, he displayed aggression that was historically uncharacteristic for him; lashing out at teachers, school staff, therapists and eventually his parents.
The first major incident happened back in the Fall of last year, when he had a bout of aggression at school, and believing that it was related to having GI distress, which was not uncommon, his mother took him to the emergency room as it was discovered that he had major blockage. While it seemed as though we had solved the problem, the behavior continued, and so after consulting with his neurologist and psychologist, we decided to adjust his medications. One of my most challenging experiences was driving with him in the car and him trying to grab and scratch me, forcing me to reach into the glove box for his medication, while keeping control of the car.
We began to receive regular phone calls from his school, requesting that we pick him up in the middle of the day when he was having behavioral outbursts. It became a real challenge for us to leave work in the middle of the day to pick him up. Around the end of last year, the administrators and teachers in his special education program began to float the idea of us finding an alternative placement for him. We understood by then that it might be the only solution for him moving forward. We included the school team to find a new educational home for him. However after several weeks of submitting applications to a variety of locations in our metro area, none would take him. Some schools that were floated by us sounded familiar, however none could accept my son, except for one.
Based in Wichita, Kansas, it was recognized as an exceptional school for Autism, and very soon we began to encounter parents who had also sent their child there, and they had nothing but good things to say. Even some of our son’s therapists shared great opinions about it, so we took that as a sign to move forward.
Image from @itsbrianerickson on Unsplash
We began the process of phone calls, emails, zoom meetings, school records being sent back and forth, and a number of doctor’s appointments. Once we got the approval from our State’s Board of Education, we began planning to move him to his new home. We all made arrangements to drop my son off at the beginning of June.
Following a two day drive, we all conveyed at a nearby hotel. My wife and I met with my son’s mom and boyfriend, we exchanged pleasantries and then proceeded to take our son out to dinner, before spending the night at the hotel. To say this moment was surreal is a severe understatement. I wrestled with my emotions of dropping my son off and him not returning with us.
The next morning we arrived on the campus, winding our way around the clinical building until we got to the therapeutic day school. We were welcomed by a small collection of staff and administrators, and after the initial hellos, we started a tour of the campus.
We eventually made our way to his new group home, and entered a small common area. The residents’ rooms were on either side of this common area, and soon we were led to what would be his room. While the building and staff appeared to be kind and well trained, I still felt a sense of grief that he would be living in an environment that didn’t feel like his home.
My mood was lightened a bit once we entered his room, which was already set up by staff with furniture items we had ordered, along with some canvas pictures. He seemed to take to it right away, climbing into the bed and getting comfortable. The rest of the day we spent in meetings, which felt like an extended IEP meeting, while my son spent time in his new classroom.
Afterwards, we began the process of transitioning out of the campus, and it was suggested that we do that at dinner time, since it would be more natural. We all returned to the group home, where my son was given a seat at a table in the common area with his plate of dinner; chicken tenders, fries and veggies. Normally, this was a great dinner that I knew he would enjoy, but very quickly something gave me pause. As I looked at him navigating the food he could easily eat with his fingers, my eyes turned to the mixed veggies, which he would need a fork to eat. He struggles with using a fork, and I always help him. It was then that I was hit with a new realization, one that I struggled to accept:
I had to leave.
I had to say goodbye to my son, trust that he was going to be taken care of, supported and fed. For the first time in his life, I was leaving him behind to live somewhere, and I really didn’t know how to feel. As challenging as the emotions I wrestled with were, I had to find peace and know that this was in fact for the best. There would be in-person visits soon enough, weekly video calls and the opportunity to bring him home for the holidays. I had hope. Hope that he would be getting wonderful care, hope that his teachers and school staff would engage and reach him, hope that he would be well fed and have help, hope that he would feel safe and loved when he put his head down at night, and that his dad would kiss his head in spirit. I asked God to watch over him, and drove away in hopefulness.
John Fela (Felageller) is the Ministry Relations Manager at Joni and Friends Chicago, working with churches to equip and train them to help the disabled in their communities. Previous to that, he spent almost 20 years in education, working with children from Infants to Middle School, serving in a variety of roles including Teacher, Mentor Teacher and School Director. John lives in Lyons, IL, is married and father to his son Christopher (ASD). He is a public speaker, multiple podcast guest, and regular contributor to Key Ministry’s Special Needs Family blog, as well as other special needs blogs including Hope Anew and The Mighty. Connect with John on his website: www.johnfela.com
Source: Special Needs Parenting- Key Ministry
