Updated: June 25, 2021
Originally Published: June 13, 2015
As I hear the front door swing open, I know it’s Lucas coming home, fast food in one hand and his trusty blue backpack in the other. I rush over for a hug, which he tolerates more than embraces. Sundays are our family days, and my partner, Mark, and I have five kids, with Lucas being the middle child. He’s one half of a boy-girl twin duo, and his dimpled smile could light up a room.
When Lucas turned 17, we faced an agonizing decision to place him in an ICF/IID—an Intermediate Care Facility for Individuals with Intellectual Disabilities, commonly known as a group home.
In the year leading up to that decision, Lucas exhibited troubling behaviors. He was prone to violence, had troubling urges, and was known for smearing his own feces. In hindsight, I wish I’d acted sooner for his sake and for the well-being of our entire family—my anxiety and stress levels were through the roof! Lucas has been diagnosed with Autism Spectrum Disorder, Level 3, which is often referred to as severe autism. Though he can say a few words, he primarily communicates nonverbally. He also deals with a severe case of pica, necessitating constant supervision to prevent him from consuming dangerous items. Despite years of effort in toilet training, he still wears diapers.
The chaos in our home escalated to a point where it felt like we were living in a war zone. I remember one morning when I went to wake Lucas, only to discover he had deliberately removed a clean diaper, defecated in his bed, and smeared the mess on his face. As the primary caregiver, I had to suppress my disgust and clean him up—an experience that left me feeling sad, angry, and utterly overwhelmed.
Our days were marked by violent incidents, with Mark often becoming Lucas’s main target. Even I found myself on the receiving end of a kick or punch now and then. Mark usually managed to keep Lucas from hurting him or the other kids while also avoiding causing Lucas harm in the process. Sometimes, Mark would get bruised while trying to restrain him.
Occasionally, amidst the chaos, there were fleeting moments of humor. One time, while Mark was preventing Lucas from attacking his siblings, he jokingly exclaimed, “Not today, Zurg!” channeling his inner Buzz Lightyear. Lucas was so taken aback that he let go and wandered off. They repeated that scene for the rest of the evening, though it never worked again.
A week after Lucas’s placement, I found myself crying in the grocery store. We no longer needed lactose-free milk or Pop-Tarts. The first six months after his move were filled with tears every time I thought of him. Guilt, anxiety about how he was faring, and simply missing him all overwhelmed me.
When Lucas arrives on Sundays, I can’t help but mentally check off a list of concerns: Has his hair been cut? Is he clean? Are his fingernails presentable? The heartbreaking truth is that, despite my high standards, the group home is doing a far better job than I ever could. They have staff available 24/7—something we couldn’t manage while juggling four other kids and full-time jobs. This decision was undoubtedly the best for both Lucas and our family, yet I still grapple with guilt over feeling relieved.
Lucas often rushes to the calendar when he sees me, eager for reassurance that he’ll be visiting. He longs for me, and I miss him, too. However, living together isn’t what’s best for us right now.
Lucas has been on a waiting list for financial assistance to support his living at home for nine years. I expect his name will rise to the top in a year or two, but even if that happens, I plan to decline any assistance.
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In summary, parenting an autistic teen can be incredibly challenging, and sometimes the best decision involves letting go and seeking support from professionals. While the emotional toll can be significant, it’s crucial to prioritize both your child’s needs and your own well-being.