WHY I WALK
This video is from last Saturday's kick-off event for this year's Autism Speaks walk. Our walk chair had asked if I would share my story of why I walk, and I agreed. In part because I'm terrible at saying no to things, and in part because I think it's important, from an advocacy standpoint, that everyone in the autism community shares their story. Because it's a spectrum disorder, personal experiences vary widely, yet there are common things that link us all, and you never really know what someone needs to hear - either to inspire empathy and compassion and interest outside of the community or to give a verbal, I-see-you kind of hug to someone within. Playing a supporting role to someone with autism can feel quite isolating at times. My younger brother and I recently had a conversation about how we kind of wish there were Al-Anon type meetings for family members of people with autism. It's a hard relationship to try to explain to people who haven't been there - and let's be honest, it doesn't exactly make for excellent party talk.
When we were younger, Feff's school and residential facility hosted sibling workshops at the annual Family Day. I went to my first one when I was around 7-years-old. I was the youngest in the room (other than my sister) by 25+ years. The workshop leader asked all of us to share some of the challenges we experience with our autistic siblings on a day to day basis, assuring us that everything we said would remain completely confidential. My hand shot up (brown-noser, what?) and I said, "Sometimes I want to ask my mom for help, but I don't because I know she's busy with Jeff." I thought this was a fairly innocuous statement. The WL thought it was an adorably succinct revelation and relayed it as such to my mom. (Confidential my Aunt Fanny.) My mom thought it was a heart-wrenching reflection of her inability to give each of us everything she had at every second of every day, and immediately started crying. (Which, by the way, she tried so goddamn hard to do. [The giving us everything part, not the crying.] Hi, Super Mom.)
I decided to stop sharing after that. Okay, it wasn't quite that dramatic of a switch, but I did realize that my story is inextricably linked to my mom's story - and my sister's, dad's, brothers', yadda yadda - and that whenever I share my experiences, I need to be cognizant of their perspective and how they might be affected. And not even just my family - the entire autism community. (So it's usually easier just to, erm...not...share.)
Then this walk came into my life. Not only did it give me a platform from which to speak, that platform seemed to come with an imperative. I felt that if I were going to ask people to hand over their hard/moderately difficult-ly-earned dollars, I needed to let them know why this cause was/is so important to me. SO bit by bit, I have begun to open up about my family's journey with autism, but it's still very new to me. With each conversation or social media post, I feel like I'm walking a tightrope, emotionally speaking. A tornado of feels swirls up inside of me, threatening to ruin us all. (Er maybe just me/my carefully crafted composure.)
My reason for stating all of this is that, before speaking at the kick-off event, I didn't really realize that I've been unconsciously using this walk as therapy - so apologies to Feffs and everyone in the room for that. I'm still (clearly) a bit of an emotional wreck where Feffs is concerned, but honestly, I probably will be until we find a cure and he finally gets to talk. And THAT'S why I walk. I want to know what he thinks every day. I want to know what his experience has been like - because, my God, I can just not even imagine. I want to hear all those sarcastic zingers he's been harboring fly across the room. (Though I may not feel the same if/when I find myself the intended target.) I want him to be able to live on his own. I want him to travel. And forge relationships with strangers. And to experience all the many crazy, stupid, lovely things this world has to offer. I walk because I refuse to believe this future is impossible for him, and I want to do whatever I can possibly do to help make it a reality.
If you would like to help me help Autism Speaks help Feffs and other amazing people like him, click here to donate - or to sign up to walk with us on April 29th!! You'll get to meet the amazing Feffs himself - and the rest of the big-hearted Feff Fan Clubbers I'm eternally grateful to have in my life.
The best thing to come out of Feff’s 5 week stint at Bryan Hospital was meeting Dr. Nightengale. (His real name, because you can’t make that kind of stuff up.) Dr. N. didn’t have to spend much time with Feffs to declare, “Any idiot can tell Jeff is autistic.” (My mom is a bigger woman than I for never passing this astute observation along to those first patronizing docs.)
A diagnosis! Finally! Now Feffs can get the treatment he needs, right?! It wasn’t quite that simple. First, Dr. N. said we were a lovely family, but we couldn’t do this alone. He proposed sending Jeff to a residential school – there were a good many in the states, just none in Nebraska. My mom balked at the idea of sending Jeff away. Dr. N. said okay, well, Jeff could still be taught to speak – he would need 2hrs of speech therapy/day. When Lincoln Public Schools refused, Dr. N. and my parents got it on Jeff’s IEP, so they would have to comply – theoretically. Spot checks revealed he was getting 0-20 min/day. LPS repudiated the autism verdict, coming up with a number of “expert” opinions/alternate diagnoses. Dr. N. suggested my parents take Feffs to Menninger’s, a famed psychiatric clinic in Topeka, KS, for complete testing/an irrefutable diagnosis. While Feffs was there, we stayed close by at a Ronald McDonald House (Where my baby brother, Alex, stood up for the first time.) (Some people will do anything for attention.) It was a long five days in Topeka – all day, every day testing; they grilled my parents about family history, driving my mom to tears at one point; Feffs was throwing up/got super agitated and kicked out the window of our car. (My father found this less hilarious than my sister and I did.)
Menninger’s confirmed the obviousness of Feff’s autism. LPS was still non-compliant. Jeff also started coming home from school with bruises – one in the middle of his back from being shoved up against a wall-mounted pencil sharpener. His bus driver once sent him off the bus without shoes on – into a foot of snow. In short, Nebraska wasn’t at the forefront of autism treatment/education. My parents started to explore the idea of out-of-state residential/educational facilities, fighting LPS tooth and nail, every step of the way. When Feffs was rejected by every school, my parents discovered LPS had falsified his records, saying he was completely uncontrollable, had x number of aggressions a day, etc. This was political – if a district is unable to provide a child's education, they are required to fund that education elsewhere. A fact that was plastered across the Lincoln papers, with the superintendent declaring, “We don’t like spending these kinds of dollars any more than you do.” My parents were mortified. Even I heard about this for years from my fellow classmates, who no doubt heard about it from their parents. The positive thing to come from all of this is that LPS started working with other school districts in the state to try to develop residential special education programs in NE, “so we can serve them here for less money”. (Also, presumably, so “them”’s parents wouldn’t have to ship them across the country for decent care/education.) Devereux Santa Barbara was the last school to call to turn Jeff down. My mom broke down on the phone, saying she just didn’t know what to do. Hearing her hurt/love/desperation, they agreed to give Feffs a trial run. They immediately fell in love with his charming smile and general heartbreaker-ness. (Duh.) Thus began a new (beachier) chapter in our lives.
Autism Speaks is doing incredible things to ensure an easier path for families of those w autism - and funding that insanely important research. (Still praying for that magical key to unlock Feff's voice!)
If you would like to help them keep doing these unicorn-y things, you can donate here: http://bit.ly/FFCstacieannabelle
By the time Feffs was 10yo, the Corliss Family had reached peak exhaustion.
My mom had been working night shifts so she could be home with us during the day/would pass the baton to my dad when he got home from work, stealing a couple hours of sleep in the overlap. Feff's behaviors were increasingly difficult to manage.
My sister & I learned at a young age how to loosen a strong grasp on our hair without losing too many follicles. (Press down on the knuckles/pull up on the thumb.) If Feffs bit his wrist/reached out w 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/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 – one place called Lollipop Farm swore they could handle him, but he got kicked out for biting other kids (oops).
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 doctor took one look at this [beautiful] mess/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 & 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 & me. We stayed at a Red Roof Inn. Kitties & I, being the idiots we were/are, would refer to every RRI we saw in the future as "Kansas City".
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A little public awareness would have gone a long way in lessening the emotional strain on my parents. Autism Speaks has made remarkable strides in that field. To help them keep doing what they do, please consider donating to this year’s walk!
You can donate here: http://bit.ly/FFCstacieannabelle
Kitties [happily] squeezing me to death, me crying my face off, Feffs licking my bald head...somehow this photo just makes so much sense.
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 & 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 favorite part of this story is that my mom and sister 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 FL my parents considered going to, but it would have cost them $10,000 & 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 Autism Speaks 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.
To help Autism Speaks keep on keeping on, please consider donating to this year's walk!! You can donate here: http://bit.ly/FFCstacieannabelle
When Jeff was 5yo, 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. I was a (totally precious) newborn at the time. My dad woke/brought me into my mom to nurse while he went to grab the paper. 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 fam.
My main takeaway from this story is…I don’t know how the nickname “Sleepwalking Swinger” never stuck for Feffs, but I’m definitely attempting to bring that one back.
My other main takeaway is that 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 be particularly helpful to newbies.
If you'd like to help them keep doing what they do, please consider donating!
You can donate here: http://bit.ly/FFCstacieannabelle
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.
This brusque dismissal brings to mind a popular (and horrendous) theory from the fifties called the Refrigerator Mother Theory. "Experts" laid the blame for a child's autism on a lack of maternal warmth. (I can assure you, my sweet and loving mom was/is in no way, shape, or form lacking in warmth.) ♥️♥️♥️
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 w 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, and it would just be frustrating for Feffs to fruitlessly attempt to communicate w 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.
Please consider contributing to Autism Speaks to help families get the assistance they so desperately need!
Click here to donate: http://bit.ly/FFCstacieannabelle
GUYS! As most of you know, I participate in the Autism Speaks Los Angeles Walk every year in honor of/alongside my big brother Jeff aka Feffs. This year's walk takes place on April 29th. I thought I'd kick things off by sharing some fun facts/tidbits/shed some light on Feff's and my family's journey with autism.
I'll start w this nuggetty gem. Nov. 11 1980. Feffs is almost two years old. At this point, he's a bubbly little guy w about 20 words in his vocabulary. He's been dealing with a gnarly ear infection/his antibiotics make him super foggy, but my parents have zero inkling of what's 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 solemnly shakes his head and that toddler finger at her. (Something I've taken to doing w Elijah, albeit w limited success. Apparently I don't have Feff''s charisma.)
Feffs is now severely disabled with autism and completely non-verbal. As I refuse to give up on my nightly star-wish to hear him talk, I selfishly raise money every year for more of that research we need so much of. If you'd like to contribute, please please do!!
Donate here (pls!): http://bit.ly/FFCstacieannabelle
*andscene*