from our partnerLightWorkers Guest
written byStacie Corliss
My oldest brother Jeff, or as I call him, Feffs, is severely disabled with autism. He is completely non-verbal and has a whole host of behavioral challenges to contend with on the daily.
When I was in first grade, my teacher asked all of us to stand in front of the class and say something about ourselves. When it was my turn, I bounced up to podium and said, “My brother’s autistic.” It took a minute for my teacher to figure out what I had said, but when she did, she responded by saying, “Oh, that’s interesting, but what about you? Tell us something about you.” What I don’t think she understood is that when you have a sibling with autism, especially one you love as much as I love Feffs, his autism is about you. You carry it with you every single day, in part because you hope your awareness and your advocacy will somehow lessen his load and in part because you don’t have a choice.
Growing up with Feffs was hard, I’m not going to lie. The year I was having that miscommunication with my teacher, my family had pretty much-reached peak exhaustion. Feff’s behaviors were getting harder and harder to manage—my sister and I quickly learned how to loosen his hand from our hair without losing too many follicles (push down on the knuckles and pull up on the thumb), daycare was impossible to come by—one place that swore they could handle him kicked him out when he bit another client (welp)—my mom starting working night shifts so she could be at home with us during the day and would then pass the baton to my dad when he got off work. And when they weren’t working or corralling us kids, my parents were, for lack of a better phrase, fighting the system.
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Not much was known about autism at the time and there was a severe lack of resources—especially in NE where we lived then. They had to fight the doctors for a diagnosis and proper treatment, they had to fight the school system for decent care and education, they had to fight an ignorant community who didn’t understand Feff’s aggressive outbursts and would attempt to shame them over their seemingly ill-behaved child. My mom even had to fight a priest who excoriated her for leaving mass early when Feffs was acting up.
Witnessing all of this, I was—and still am—cognizant of my uselessness. My older sister would play mama bear when my parents were working, my younger brother eventually grew tall enough and strong enough to be able to help from a physical standpoint. And then there was me. I had no real role aside from loving Feffs fiercely and writing little notes and telling stupid jokes to try to lighten the mood around the house.
So, me standing up in front of the class and saying my brother was autistic was, I think, me trying to be an advocate. It was a sort of declaration of love and loyalty. And I guess me doing this walk every year is really just an extension of that. Because Feffs is incredible. Just an absolutely incredible human. He is deeply intelligent and deeply, deeply loving. You can see so much happening behind those handsome hazel eyes of his and it just seems so unfair that he has no way of expressing it and that his life has been so hard—especially considering all that he’s given to everyone around him, teaching all of us countless life lessons like patience, empathy, gratitude and the inexhaustible power of a sweet, sweet smile. I don’t want to know the person I’d be if Feffs hadn’t shaped my life. And I just wish there was something I could do to make everything better for him.
I randomly stumbled upon the Autism Speaks walk in Santa Barbara in 2011, just before the walk was to take place. I raised 2500 bucks in a week and talked my sister into walking with me last minute. After a couple more years of that one, I discovered that the LA walk always takes place around my birthday.
That’s when things really picked up, and the Feff Fan Club grew to its current size. I used the walk’s close proximity to my birthday as an emotional bribe to get my friends to show up and they completely bowled me over with their love and support. Every year, they have become more and more involved, and each year our team has raised more money than the year before. Though last year we raised almost $22,000, so that might be a little tough to top.
The best part of all of it is seeing Feffs with my friends. The severity of his autism makes it tough to include him in everything I want to include him in—which is everything. He is so important to me and such a huge part of my life, and before doing this walk, only a handful of my friends had ever even met him. That first year, I was worried it might be too over-stimulating for him, but he did so good. It wasn’t a total cakewalk, but he did so good—and every year, he gets a little more comfortable. The expression on his face when he sees all of us there in matching shirts with his name—well, initial, on them—is the best birthday gift a girl could ever ask for.
Long story long, that’s why I walk—to forward progress in autism advocacy and research—and to let Feffs know that I care and to celebrate him for all that he is and all that he’s given.
Random vignettes I’ve shared on Instagram, a timeline of live with Autism:
- November 11, 1980. Feffs is almost two years old. At this point, he’s a bubbly little guy with about 20 words in his vocabulary. He’s been dealing with a super gnarly ear infection/has some super foggy moments while on his antibiotics, but my parents have zero inkling of what is to come. Feffs loves his new little sister (how could you not) except when she cries. Every time she opens her mouth to start squalling, he shakes his head and that little finger at her, solemnly.
- By the age of two, it started to become clear that something wasn’t quite right with this little sailor. As his ear infections worsened, his doctor put him on an adult dose of medicine. My concerned mom told the doc she felt like she was locking him in a closet every time she gave him the meds—Feffs was starting to lose his language, was less apt to make eye contact, and his bubbly spirit was diminishing. The doctor basically told my mom she was being a stupid, worrisome mother. Eventually, she got up the courage to change docs. The new one couldn’t believe how many drugs had been pumped into this tiny guy’s system and traded out the meds for ear tubes. Still, the digression in social interaction and communication persisted. Not much was known about the Autism spectrum at the time, and as Feffs wasn’t exhibiting the “normal” behaviors associated with the disorder, he wasn’t considered a candidate for that diagnosis. He saw neurologists who put him on meds that only made things worse, went to Boys Town for a fairly inconclusive medical evaluation, and settled into a handicap preschool. My parents hoped intensive speech therapy would help, but the school wasn’t great about following through on that, and without the autism diagnosis, they didn’t have the resources to obtain it in other ways. The school also didn’t want to teach him sign language—they postulated that not enough people are familiar with the language/it would just be frustrating for Feffs to fruitlessly attempt to communicate with the ignorant masses. Suffice it to say, many strides have been made for the Autism community in the past few decades, but we still have a long, long way to go.
- My mom had been working night shifts so she could be home with us during the day and would pass the baton to my dad when he got home from work, stealing a couple of hours of sleep in the overlap. Feff’s behaviors were increasingly difficult to manage. When Feffs was 5-years-old, my parents woke one day to a beautiful—and beautifully silent—spring morning. This was a welcome reprieve. Feff’s behaviors had been worsening/escalating. Living in a constant state of sensory overload, he would scream, cry and aggress over things most of us would never notice. The night before was particularly bad. No matter what my mom tried, Feffs was inconsolable. Over-extended and overwrought, she eventually had to tap out, retreating to her room to cry out her frustration. No matter what she and my dad did, it never seemed to be enough for their little guy. Fast-forward to that lovely dawn, where my dad discovered the front door was wide open. His mind raced. He ran to check bedrooms. Both Jeff’s and Katie’s were empty. He ran to see if any nuggets were snuggled in next to my mom—Katie was. Jeff was gone. Cue: Panic mode. My parents turned the house upside down, checking every closet, under every bed—every possible hiding spot—to no avail. Heart attack city. They made that excruciating call to the police. Relief isn’t a strong enough word for the emotions they experienced when the woman on the other end said she was pretty sure they had found their kid. Wearing nothing but his Superman underwear, Feffs had made his way to the scene of a bachelor party a few blocks away. The guys thought they heard something strange out front and, upon investigation, found my sweet shirtless brother swinging away at their door. They assumed he was deaf/called the police, who took him to Cedars Home for Children while attempting to locate his family. Wandering is a very common, very scary thing with autistic kids/adults. There are so many things to be aware of as a parent. That’s one area where I’ve seen Autism Speaks Los Angeles be particularly helpful to newbies.
- When Feffs entered Kindergarten, he still didn’t have a diagnosis of Autism—he was listed as “Handicapped, other, non-specific.” My parents continued to explore every possible avenue in getting him the help he so clearly needed. This was a bit trickier in the pre-Internet days. When my mom found out about a possibly pertinent TV special done by a notable allergist, she tracked down the info and called to get the transcript. When she and my dad heard a specialist was giving a talk on yeast overgrowth due to antibiotics, they hopped on a flight to Denver. That guy determined Jeff was low on magnesium/put him on a special yeast-free diet. All fruit had to be washed in bleach water, he couldn’t eat anything that had been stored in a barrel, etc. Needless to say, it was a little tough to adhere to, and the behavioral changes, if any, were minimal. (My fav part of this story is that my mom and sis would skulk down to the basement to sneak pudding pops for a moment of sanity/much needed sugar high.) There was some other doctor/expert/specialist in Flordia my parents considered going to, but it would have cost $10,000 and they decided it sounded a little hokey. I can’t imagine what it must have been like trying to figure out what to do, what was real, who to trust. At a recent #AutismSpeaks event, parent after parent waxed poetic (aka sobbed gratefully) about the community/information Autism Speaks has provided them. If you haven’t been there, it’s hard to understand just how insanely crucial this is for families of those on the spectrum
- By the time Feffs was 10-years-old, the Corliss Family had reached peak exhaustion. As mentioned, my sister and I learned at a young age how to loosen a strong grasp on our hair without losing too many follicles. If Feffs bit his wrist or reached out with his other hand, it was a sign he needed more space. It was in your best interest to give it to him. My dad has lost many a shirt to outbursts and aggressions. None of it has ever been intentional. Immediately following any of these incidents, Feffs would look so deeply apologetic. His system was just completely overwhelmed. I would feel so guilty when fear crept in–I knew my brother would never, ever want to hurt me, but I couldn’t always quell the nerves. Another thing to be aware of with Feffs was/is his Pica, “the persistent craving/compulsive eating of nonfood substances,” something commonly associated with autism. Poisonous plants & cigarette butts were/are particularly concerning. Daycare was impossible to come by. Father’s Day weekend, my dad tried to get Feffs out in our local Fun Run. Feffs couldn’t handle the crowds. One lovely man decided this was an excellent time to tell my dad what a bad father he was for forcing Feffs to participate. An attempt at a drive-in movie was thwarted by Feff’s screams. Breakfast at Grisanti’s turned into the whole restaurant staring at us with disdain when Feffs had trouble waiting. When Jeff was acting up during church/my mom tried to hustle us out the door, she was stopped by a priest who excoriated her for leaving before the service was over. My pregnant mom’s hormones threw her into a crying jag.
- Feff’s new doc took one look at this [beautiful] mess and said we all needed some rest. She suggested a 5-week program at Bryan Hospital’s psych ward. Feffs would stay there for observation/evaluation. We visited every day except for that first weekend. That first weekend we went to Kansas City and had the most fun/relaxing few days at Worlds of Fun, etc. My mom said it was the first time she and my dad could fully devote their attention to my sister and me. We stayed at a Red Roof Inn. Kitties and I, being the idiots we were/are, would refer to every RRI we saw in the future as “Kansas City.”
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