Apr 05, 2012 2 Share

The Story I Didn't Want to Tell

Black and white illustration of woman at desk with computer, head in hand.

This is one of those columns that I never want to write. These are the stories I wish I didn't have to tell. But, of course, those are the ones that need to be written. 

As I wrote in last week's column, this visit home to my family started off with a difficult evening. The days that followed, however, were peaceful. The time passed quickly, and soon it was Friday, the day Willie was scheduled to begin his respite weekend. Every few months, my parents apply for Willie to receive a spot on a supported weekend. He goes swimming, sees movies, and spends time with other young adults with special needs. My parents, in turn, get time off from 24/7 caregiving, and help foster Willie's independence as well. Willie enjoys the weekends, and his behavior tends to be excellent when he's away. 

When Mom and I drove Willie to the hotel, he seemed fine. Seemed, of course, is the operative word. We talked and laughed on the 40-minute drive, trading inside jokes and high-fives. When we arrived at the hotel, Mom asked if I'd like to come in, but I declined, thinking that it might be easier for Willie to transition to the weekend if he could say his goodbyes separately. As we stood in the parking lot, I gave Willie a hug and told him that I loved him and was proud of him. I watched him walk away, and I thought how amazing it was that my “little” brother was going away for a weekend, that he'd be 25 in a month. 

Yet as I was sitting in the car having these proud older-sister thoughts, Willie was on the verge of a meltdown. The weekend registration and check-in process was tedious; to hear my mom tell it, Willie grew more and more frustrated and tense the longer they waited. That, I could understand; as I read my book in the car, I felt my impatience rising as well, wondering what was taking so long. 

Little did I know that, as I waited, Willie was responding to the delay by biting himself, striking at mom, hitting her and knocking her to the ground. Aides stepped in to help, but not fast enough. By the time my mom returned to the car, she was shaking. She'd hit her head on marble, but the shock of Willie's outburst mitigated the physical pain. She was more upset than hurt, more distraught than injured.  

The questions spilled out: What had caused this latest episode? What could have been done differently to prevent it? These were logical questions that opened the door to more haunting ones: Why does Willie lash out at us? What happens to his mind and body when he has these “rage blackouts”? I could feel the guilt and pain behind these questions, and I tried to hold them with as much compassion as possible. 

But I felt terrible, too—how could I have not been there to help? True, Willie had seemed calm and collected in the car … but I should have known how quickly that can change. 

I couldn't answer the questions that weighed on both our hearts; I don't know why or how Willie changes so quickly from hilarious brother to out-of-control aggressor. I couldn't give my mom the answers we both wanted to hear. What I could tell her, though, was that she's an amazing mom, that she's an inspiration to me. She's a significant part of why I am not afraid of having a child with autism; she and my dad have modeled love and patience in extremely difficult situations. They are brave and kind and good, and if Willie has any chance of overcoming these behavioral struggles, it will be because of their help, their persistence, their support. 

It's easy to get angry at Willie when he strikes out. And yet it's also impossible to stay angry at Willie, because during and after his episodes, he is clearly in pain. He's causing suffering because he is suffering. And it is my desperate hope and prayer that we might, somehow, help him to be free of the pain that he carries.

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I Understand!

My son has had his moments of rage exactly as Willie has. But there is hope! My son did overcome his behavior struggles. But it wasn't easy for him. For us it has been a matter of planning for everything we possibly can right down to the most minute detail. Does Willie have a particular activity he likes to do to keep him occupied? Like something that you might take with you for him on a long car ride or something?The Respite Service should have had activities available to occupy Willie's time during the check-in process or a pre-registration process. Being a respite service requires skills and know how and available staff to recognize a young man such as Willie who might be becoming escalated and how to detour it before the melt down happens. If staff were available to begin interaction with clients upon learning they are there for registration, they could do activities with them while parents and guardians are completing the check in process. But often times in facilities like this the problem is lack of staff period, much less properly trained staff. I don't know if that was the case with Willie's visit or not, but I have seen that all too often. 


Could the respite place

Could the respite place streamline their check-in process or do something like hospitals so a preregistration where guests are checked in by their care givers before and then at the moment it is just hand off of care with a few words exchanged? I am very sorry for what happened to your family, I know those moments are so devastating and you're right your brother can't help himself and I am sure he feels badly for a situation he couldn't control.My prayer are with you.Sylvia Sanchez-Abreu(Mother of a 21-year-old young man on the spectrum)