Parenting
By Jessica Greene
Updated: June 25, 2021
Originally Published: June 13, 2015
As Ethan storms through the front door, he clutches a takeout bag and soda in one hand, tossing his backpack onto the floor with a thud. I approach him for a hug, which he gives only half-heartedly. Sundays are family days, and my husband, Mark, and I have five children, with Ethan being our middle child. He is one half of a set of twins, born just moments after his sister. With his large hands and an endearing, rare dimpled smile, he captures hearts easily. However, at 17, we faced the agonizing decision to place him in an Intermediate Care Facility for Individuals with Intellectual Disabilities, commonly known as a group home.
In the year leading up to his move, Ethan displayed violent tendencies, sexual aggression, and distressing behaviors like smearing feces. Reflecting on those times, I realize I should have sought placement for him sooner, not just for his well-being but also for the safety of our other children, myself, and Mark, whose anxiety was spiraling. Ethan has severe Autism Spectrum Disorder, Level 3, which means he is mostly nonverbal and struggles with extreme pica, requiring constant supervision to prevent him from ingesting dangerous items. Despite years of toilet training, he still wears diapers. As he entered adolescence, his rapid growth made him a more formidable presence, leading to increasingly unsafe behaviors. That last year at home felt like living in a battleground, where the unthinkable became routine.
I vividly recall waking Ethan one morning only to discover that he had deliberately removed a clean diaper, defecated in his bed, and smeared it across his face. In those moments, I had to suppress my disgust to clean him and his surroundings, grappling with feelings of sadness and anger while trying to maintain a sense of detachment.
Daily life was punctuated by violent episodes, with Mark often in the line of fire. I too suffered injuries, like a kick to the face or a punch to the stomach. Mark usually managed to shield the other kids while avoiding harm to Ethan, though sometimes it was unavoidable, leaving bruises from attempting to restrain him.
Occasionally, we found humor in the chaos. For instance, when Mark was preventing Ethan from lashing out at his siblings, he jokingly channeled Buzz Lightyear, exclaiming, “Not today, Zurg!” This unexpected quip startled Ethan, causing him to release his grip. They repeated this playful exchange for the rest of that evening, although it never worked again.
Just a week after Ethan’s placement, I found myself weeping in the grocery store, mourning the absence of lactose-free milk and Pop-Tarts from our shopping list. For six months, tears filled my eyes every time I thought of him, overwhelmed by guilt, anxiety about his well-being, and a deep longing to see him.
On Sundays, as soon as Ethan steps through the door, I mentally assess his appearance: Is his hair cut? Has he been shaved? How dirty are his fingernails? Is he wet and hasn’t been changed? The truth is, despite my high standards, the group home provides him with round-the-clock care that I simply couldn’t offer, especially with four other kids and full-time jobs. This arrangement has been beneficial for both Ethan and our family, yet I struggle with feelings of guilt for feeling a sense of relief. It’s also difficult not to react when Ethan eagerly wants to check the calendar to confirm his Sundays with us, indicating his yearning for connection. I miss him too, but living together isn’t what’s best for us.
Ethan has been on a waiting list for home support funding for nine years, and I hope he will reach the top soon. However, even if that day arrives, I plan to decline the offer.
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In summary, making the decision to transition from living with an autistic teen can be incredibly challenging and emotional. However, it may be the best choice for both the individual and the family, offering a chance for healthier dynamics and improved care.