Two years ago, our family was forced to make a decision that brought the most soul-crushing guilt, emptiness, and profound relief – all simultaneously. We placed our then 8 year-old son, Gavin, in a group home for severely affected children with autism who require protective supervision. It was a decision that took me years to come to terms with, and one that I swore I’d never make, despite extended family members telling me for years that our family was a “sinking ship,” and that the only way to save ourselves was to get my younger son more help than our family could offer him.
One of the bright spots in Gavin’s life was his school – Morgan Autism Center (MAC), where he would actually ask to go to school on the weekends! MAC provided Gavin with the highly structured, 1:1 support he required, and he was happiest during the school day. It also provided me with the peace of mind that he was not only safe and thriving at school, but the teachers and staff genuinely cared about him and his well-being. When Gavin’s needs became increasingly challenging, I actually attempted to emulate the MAC school model of implementing highly structured activities in 15-minute increments to see if it would help him at home.
Despite Gavin’s success at school, I knew he needed more, even after spending several hundred thousand dollars of our savings on caregivers to help with both of our sons who have autism and related medical conditions. The severity of Gavin’s autism causes him to engage in scary, unsafe behavior. He bolted into streets, climbed out of windows, got out of the house and opened car doors on the freeway without any awareness of the dangers of his actions. Between the caregivers and myself, I ensured that there was twenty-four-hour coverage for Gavin. Both of my sons needed to co-sleep with me. I bought a king size bed, placed it in Gavin’s room, and put a deadbolt lock on the door so that I could lock it at night from the inside, thus ensuring their safety at night.
Regardless of our around-the-clock hypervigilance, one incident shook me to my core and made me realize that Gavin could no longer live in our home safely. Gavin wandered out of our house during a (rare) family gathering. After a frantic 911 call and an all-out search, my sister-in-law and I found him in the back of a police car. He had gone missing for almost an hour. As I sprinted to the police car, my heart pounded in my ears. The police officer took the opportunity to give me some advice: “You need to keep an eye on your kid. There are a lot of perverts out here!” His admonishment meant very little to me because in that moment I was more worried about how Gavin could possibly have managed to cross Hwy 101 to get from Redwood Shores to the other side of Ralston Ave in Belmont!
Gavin has been in his group home for two years now. It was a difficult adjustment for him and for me those first few months. Since the beginning, he has come home each weekend to stay with us. The staff at the group home is great, and he has 1:1 supervision twenty-four hours per day and a peer group of 3 other kids in the home who also have autism. Saying goodbye at the end of each weekend is hard on both of us – the first year or so I’d cry myself to sleep each Sunday night. To say I missed him understates how unnatural it is to separate a mother from her precious child. The unimaginable guilt I feel for not being able to be everything for both of my sons; feeling like I’m doing everything humanly possible to give both of them a happy and fulfilling life, yet hearing from my older son each weekend when my younger one is home things like “I feel lonely in the family on weekends because it’s all about GAVIN!”
I still have hope that Gavin can return to his home with us someday. With the ever-increasing research and resulting breakthroughs in understanding the underpinnings of autism, I’m hopeful that the dangerous behaviors that forced us to place Gavin in a group home can finally be mitigated once and for all. Gavin is an intelligent, funny, and loving boy who deserves to enjoy a wholly fulfilling life with unlimited possibilities like everyone else. And I will not go to my grave without doing everything I can to make sure he gets that opportunity.