My son Skyler is on the severe end of the autism spectrum, is non-verbal and suffers from Crohn’s disease. He is one week away from turning 20-years-old and I’m not prepared.
I recently sat down with Skyler’s case manager, who I absolutely adore, for our annual meeting to discuss the waiver service options and hours allocated to his budget, which are ridiculously minimal, as well as update any medication changes and goals. Toward the end of the meeting, I felt a shift from our typical lively banter to a much more serious tone and I knew in my gut what was coming. She turned to me and said, “I know this is a hard question, but the state requires me to document something in his file regarding the future. What are your plans for Skyler in case of an emergency?”
Completely frozen, eyes filling with tears at the thought of Skyler being suddenly orphaned, I responded in a quiet, defeated whisper, “I have no idea.”
You see, I’m an obsessive planner by nature and lack spontaneity or the carefree ‘go with the flow’ attitude that so many others enjoy. That’s why this topic pains me to think about and keeps me up at night with worry and fear. I can’t adequately prepare for or fully control the outcome of what tomorrow might bring for my life or Skyler’s and it frightens me.
I spent the entirety of that night and every day since the meeting obsessing over Skyler’s near and distant future plans. Where will he live or who I could possibly ask to take over my role as his full-time caregiver? Not only would it be a huge imposition on them but on Skyler as well – uprooting his life and routine to live in an unfamiliar place with people he really doesn’t know.
I don’t have an abundance of family members that live nearby or know much about Skyler. Some of my closest friends are actually special needs parents as well with their own children’s futures to worry about. There are currently no group homes or residential living facilities within a 50-mile radius that have openings, and should Skyler need emergency placement at one of them, the sparce staffing and limited resources would not allow for the 1:1 care he requires thus leaving him significantly neglected.
This topic is extremely sad and overwhelming to think about, but it’s a daily reality check for lifelong parent caregivers like me. No matter how badly I want to ignore the subject and put my confidence in God or the universe that it will all work out perfectly in the end, I can’t in good conscience do that. Above all else, I am his mother and feel that I owe it to Skyler not to leave the plans for his future completely up to fate.
So, I have begun making my lists – facilities to visit and relatives and friends to call. I’ve started writing my Letter of Intent so whoever takes my place as Skyler’s caregiver will know every detail of his life… likes/dislikes, medication schedule, things that bring him joy and why he’s the most incredible young man to walk this Earth.
My genuine hope is that I’ll never need any of these emergency backup plans and our little family will literally grow old together.
That is the future I am prepared for.
