As the front door swings open, my son Noah stomps in, clutching a fast-food bag and soda in one hand while tossing his backpack onto the floor. I rush over to give him a hug, which he awkwardly returns. Sundays are our family afternoons, and with my partner, Mark, we juggle the chaos of five kids, with Noah being the middle child. He is one half of a set of twins, born just after his sister, and he possesses big hands and a rare, heartwarming smile that can light up a room. When Noah turned 17, we faced the heartbreaking decision to transition him to an Intermediate Care Facility for Individuals with Intellectual Disabilities, often referred to as a group home.
In the year leading up to his move, Noah exhibited alarming behaviors, including aggression and self-harm. In hindsight, I realize that I should have sought placement sooner, both for his well-being and for the safety of our other children, not to mention the strain it put on Mark and me. Noah has Autism Spectrum Disorder, Level 3, which is often classified as severe autism. Though he can utter a few words, he primarily communicates nonverbally. He also faces challenges like extreme pica, which necessitates constant supervision to prevent him from ingesting harmful items. Despite years of attempts at toilet training, he still wears diapers. The combination of adolescent hormones and rapid physical growth made him a formidable presence, and the intensity of his unsafe behaviors escalated to a point where our home felt like a battleground.
I vividly recall one morning when I went to wake Noah, only to discover he had removed his clean diaper, created a mess in his bed, and smeared it across his face. In those moments, I had to suppress my disgust and focus on cleaning him up, his bedding, and the mess he had made. It left me feeling a mix of sadness, anger, and an unsettling need to distance myself from the situation.
We experienced frequent violent outbursts, with Mark often being the target. I, too, found myself on the receiving end of a few kicks and punches. Mark generally managed to prevent Noah from causing harm while protecting our other kids, though sometimes Noah ended up with bruises from Mark’s attempts to keep him at bay. Occasionally, there were fleeting moments of humor—like when Mark, while restraining Noah, jokingly declared, “Not today, Zurg!” in a playful imitation of Buzz Lightyear, which momentarily startled him into letting go.
A week after Noah moved to the group home, I found myself in tears at the grocery store, realizing we no longer needed lactose-free milk or specific snacks. For the first six months, every sight of him brought on waves of guilt, anxiety about his well-being, and a deep longing in my heart.
Each Sunday, as Noah arrives, I mentally check off a list of concerns: Has he had a haircut? Is he clean? How is his clothing? The truth is, no matter how often the group home falls short of my expectations, they are still providing care far better than I could manage at home. They have a full team monitoring him around the clock, something I struggled to do while balancing the needs of our other children and our jobs. This placement has been a blessing for both Noah and our family, yet I grapple with feelings of guilt for feeling relieved.
Noah has been on a waiting list for funds to support his living situation at home for nine years now. I hope that his name will rise to the top in the next couple of years. However, even if those funds become available, I’ve decided I would prefer to keep him in the group home, as it’s what’s best for everyone involved.
For those of you navigating similar journeys, it’s crucial to prioritize your family’s well-being while also considering your child’s needs. Be sure to check out resources like this article for additional support on parenting challenges, and visit Make a Mom for insights on family planning. For those looking into fertility options, UCSF’s fertility page is an excellent resource.
In summary, knowing when it’s time to transition your autistic teen to a care facility can be a difficult yet necessary decision. Prioritizing the safety and well-being of your child and family is paramount. Embracing this change can lead to a more balanced and healthier environment for everyone involved.