When Wendy and Zach Going found out they were going to have a boy, they began planning his future immediately. He was going to be a hockey player, a rocket scientist, a stud who would kick ass and take names and one day be president. They gave him a name that would look amazing on the back of his hockey jersey: Kegan Everett Going. When he pledged for his college fraternity, he would be picked up immediately because he had the world’s most awesome initials: KEG.
He was born beautiful. Calm, quiet, peaceful… the kind of baby that can go anywhere and fit in everywhere. He loved riding in the car, never made a fuss… People were jealous because seriously, they had the coolest baby EVER.
They didn’t worry too much about his slight developmental delays… the doctors smiled and assured them that “boys mature and develop more slowly than girls.”
He began walking and talking, albeit a little more slowly and not as much as other people’s babies, but again they were assured, “He’s a boy!”
Wendy would take him places in the car and sing “Old MacDonald had a farm…” and Kegan would scream, in his baby voice, “E-I-E-I-O!”
At 18 months old, because it was the responsible thing to do, he received his MMR immunization.
And then one day shortly thereafter, he no longer screamed, “E-I-E-I-O!” from the back of the car.
He stopped walking.
He stopped talking.
He quit responding to his name, or the sound of his parent's voices.
They were concerned that it might be possible that he was losing his hearing, so they took him to an ENT.
After examining him, the doctor said, “I can fix him right up! He’s had a lot of ear infections; we’ll put some tubes in his ears and I guarantee he’ll be walking and talking again in no time.”
Mother’s intuition is a powerful thing, and something was not sitting right in Wendy’s mind. Before having her baby operated on, she decided to seek a second opinion. They took him to another ENT.
And that’s the first time they heard the words: “I think your baby has Autism.”
It was like being struck by lightning, a punch in the throat when you were expecting a kiss.
Six words that changed their lives forever.
Suddenly, it all made sense: All of their friends and family members who had commented on how calm and cool Kegan was were suddenly coming forward and saying, “We knew something wasn’t normal…”
Another sucker-punch, right to the heart.
Wendy is the kind of woman who rarely takes things at face value. She doesn’t sit back passively and let someone else give her the bad news and not look into it for herself. She went from the doctor’s office to the computer and researched Autism: Signs and Symptoms.
As she went through the checklist, she felt her blood turn cold. Kegan had every single sign, every single symptom, times five. Kegan could have been the poster child for “How You Can Tell That Your Child Has Autism.”
At the time of diagnosis, Wendy was pregnant with their second child. In some ways, it made it easier for Kegan, because all of the genetic testing could be done through amnio, rather than by sticking and pricking and poking him. If blessings and silver linings were needed to be found, that was the only one.
Unfortunately, it made the pregnancy hell for Zach and Wendy.
They both had to be strong, for Kegan, for the unborn baby, and for each other. They barely discussed it, just did what needed to be done, read the books that needed to be read, saw the doctor’s that needed to be seen, and went to bed each night, trapped in their own grief, desperately wanting to be strong for the other and not wanting the other to see how difficult it was.
Diagnosis of a disorder or illness in a child is intensely painful and intensely private. Marriages crumble and fall apart, other children are pushed aside and ignored because of the overwhelming anger, sadness, and never-ending cycle of doctors needed to consult in the quest to fix your broken child.
Family and friends can be unintentionally cruel, making the journey into acceptance even more hellish.
Zach and Wendy dealt with the pregnancy, worked with Kegan, and pretended not to hurt so that the other could remain strong. One night, however, as they were lying in bed quietly, not speaking, the quiet sound of hidden tears filled the room and finally, finally, they were able to talk.
They held each other and cried for the death of Kegan the hockey star, Kegan the frat boy, Kegan the president, Kegan the son who would go hunting and fishing with his dad, play sports, win scholarships, get his driver’s license at 16, go to the prom, break a few hearts, and have his own heart broken, get married, live a remarkable life.
They had to change the rules, change their expectations, and accept the Kegan whose future was unknown, whose goals were limited, whose thoughts would remain a mystery, who was a child they didn’t yet know, a child for whom they needed to change the definition of “remarkable.”
When you are the parent of a child with autism, you read every single book ever written by every parent of a child with autism. You relate to their pain, their grief, their happiness, and their determination to try every single thing under the sun to make their child BETTER. You marvel at the “cures” that those parents have found: By merely removing something from their diet, placing them on a horse, buying them a piano, giving them a computer, or simply NOT GIVING UP, their child was magically, mysteriously, and wonderfully cured. The child who would never say “I love you” is suddenly looking his parents directly in the eyes and saying "I love you" and verbalizing his wants, needs and feelings.
You race out and buy all of the remedies that remove yeast and metal from your child’s body; you place a piano in your living room, you stick your child on a horse and take everything out of their diet that may or may not cause Autism. You think you see a difference… You might have noticed a subtle change… You ask people if your child seems calmer, more alert, less autistic…
And they tell you what you want to hear.
And then you realize it didn’t work.
Why did it fix someone else's child and not yours?
At what point are you allowed to stop feeling like you’re doing something wrong because, even though you’ve removed wheat, sugar, dairy, gluten, yeast, caffeine, metal, and synthetic fiber from your child‘s diet, body, and home, your child still can‘t talk, won‘t make eye contact, has grand mal seizures, and is a slave to routine?
At what point do you allow yourself to know that realizing that those “miracle cures” only happen for the chosen few doesn’t mean you’ve given up, did it wrong, or don’t love your child as much as they do?
When do they have to stop smiling at all the people who say, “It could be worse” or “You’re so blessed that God gave YOU such a special child!” or best of all, “Autism is so beautiful... his mind is rare and wonderful!” and say what you REALLY think, which is, “Are you fucking serious? How do YOU know it could be worse? Aren’t ALL children special? And what do you MEAN his mind is rare and wonderful? HE’S rare and wonderful but his autism? SUCKS!”
I’ve been working with children who have autism for many years, but I’m going to jump past all of that and move straight onto the beauty and wonder of my life that is Kegan Going, Autism Boy (like Super Boy, only with Autism). Kegan is a Rock Star, a child whom, without words, can express himself better than most adults, exudes personality and charm, and proves on a daily basis that he isn’t “Autistic“, he is Kegan. And he happens to have autism.
Kegan came into my life in the fall of 2005. He was 3 years old and I was hired to be his one-on-one transitional person to help him go from his Special Day Class (fancy way of saying “special ed”) into his regular ed preschool class.
At 3, Kegan was a funny little peanut who flapped constantly, stimmed continuously (stimming is a self-soothing or self-stimulating repetitive behavior, like flapping, spinning, etc.) and fell asleep the second he decided he didn’t feel like dealing with me anymore (which was every day). He was completely non-verbal and his only form of communication was some rudimentary sign language and a seriously outdated “talker” (vocal communication device) that he used to ask for certain food. (My boy Kegan was all about the food.)
His talker had a button for “I want” and then a choice of different items. Kegan had it in his head that it was a magic box, and if he pressed a button, whatever it was he wanted should be placed in front of him. At age 3, he always wanted pizza. He would push “I want” and then “pizza” and look at me expectantly.
Unfortunately, I was also under the impression that if he asked for it, he should have it, so I actually started sneaking pizza into school for him.
How was I to know that the adorable little smile on his face meant “Sucker!”
At first glance, Kegan was a sweet faced, passive, gentle little boy who could melt your heart by climbing into your lap, touching your face, and offering up what are seriously the best hugs I’ve ever had.
His sleepy blue eyes and teeny little bird lips made him all the more precious. He always looked like he was thinking about something really good, and had a dreamy smile on his face while he would flap happily with one hand and hum.
When I came to work in the morning he would instantly walk over to me (without looking at me) and give me a hug and a “Kegan kiss” (press his cheek against my mouth) and my resolve to be firm with him would shatter into a thousand tiny pieces as I would hand over my wallet, my keys, my credit cards, my cash, my heart, and a bag of M & Ms. If he wanted it, he could have it, just for the perfection of that kiss.
“He likes me!” I would think, not unlike Sally Field while accepting her Academy Award for Norma Rae. And instantly I would ply him with potato chips, juice, toys to flap, and anything else his little heart desired.
Then one day, I met Wendy. As I gushed about how much I adored her son and how close we were and how much he loved me and the amazing bond we shared, she smirked and said, “He’s manipulating you.”
He’s manipulating me? How on earth could a tiny, sweet, 3 year old with Autism be manipulating me? Lord GOD his mom is a bitch, I thought. What does she know? He loves me the most! I know he does!
I soon found out that she knew a lot. A WHOLE lot.
Wendy is the parent who sees her child for what he is: Smart, silly, funny, rotten, manipulative, loving, sweet, and all about Number 1 (himself). Against the advice of other Parent Advocates, she didn’t turn her home into Kegan Grand Central, didn’t fight the school district to put her child first and above all the other children, accepted that Kegan had autism but he still had to behave, and always, ALWAYS put Kegan’s needs way ahead of her own but at the same level as the needs of her other children.
She taught me how to see Kegan as typical, but with autism. For six years I had the privilege of being Kegan’s teacher, his nanny, and an honorary member of their family, and in that time I saw the struggle, the strength, the pain, and the courage involved in being Kegan’s parents.
I watched Wendy struggle every day with her determination to always, always do the right thing for Kegan, no matter what other people might think or how unpopular or un-pc her choices were.
I saw Kegan blossom from a constantly spinning and flapping 3 year old into a charming, intelligent, bored 9 year old who needed so much more than he was getting from our very small local school district.
And I saw the grief and sadness as Wendy and Zach made the most unpopular decision of all: to send him away to a place where he could grow, blossom, and be all that he could be.
This is their story. And Kegan’s story. And my story. Our story.
Wendy’s title suggestion: Autism Sucks.
My title suggestion: The Boy Who Ate Corndogs and Ruled the World.
Kegan’s title suggestion: Give Me a Laundry Basket, a Movie, Something To Flap, Elephants On Youtube, a Corndog, a Glass of Soda, Some Gum, and Leave Me Alone. Unless I Want the Channel Changed, More Food, or Something Else.
We’ll see who wins.