Coming soon (hopefully) to a book store near you!

Welcome to the Kegan Zone! We are hoping for a publishing date within the next 6 months. Please leave comments, opinions, stories about Kegan (if you know him) or experiences you've had with family members or friends who are dealing with Autism. Right now we are looking for book title suggestions... You've seen Wendy's, mine and Kegan's... What are yours?

Leave a suggestion in the comment box!

xo

Dani

Clickety-click!


Friday, September 16, 2011

Guest Blog Posting, by Ashley Hererra


Hi my name is Ashley,

I used to work in Kegan's second grade class as an additonal Instructional Assistant. It was not with Kegan but another young boy. I did have the pleasure of spending some time with Kegan and I still cherish every moment and think about how he impacted my life in his own way:)

I remember one day after lunch, Everett, Kegan and I were headed to the playground to play. I had layed Everett on my side of the bench and let Kegan loose to play as I sat for a little bit. Kegan was playing around a pole and walking in continuous circles around it. Every turn he would stop and look at me and watch me. He eventually walked up to me and just stood in front of me. I started talking to him and he just looked at me, and then he put his hands to mine and was clapping them. We were playing our own little hand clap game. Kegan was so intrigued with it, as he always was with handclapping. We were smacking our hands like a patty cake rhythm and were just enjoying our time. Kegan was making noises, talking and getting excited. Then all of a sudden he just stopped. He grabbed my face and put both hands on my cheeks and was holding my face. He then got closer to my face and was just staring into my eyes. I sat there to see what he was doing and he held onto my face for a good 60 seconds. To this day i am mesmerized at the connection he was making with me and I've felt a strong connection with Kegan ever since.

Kegan that day showed me his love in a way that hit a place in my heart and I'll keep forever. Kegan would periodically grab my hand just to hold sometimes, also. I couldn't have been more happy to be a part of Kegan's life for almost that whole year of school, and met one of the smartest, wittiest, loving young boys to enjoy my time with. I did get to see a positive change that Everett made to Kegan. It has inspired me to possibly get a degree in specializing in Autism. I have only a picture of Everett but it was a down time I had when Kegan was watching stories on the computer that I attached to this email. I have now moved out of Crescent City, CA to further my career in school but I dearly miss Kegan.

I asked my mom almost everyday how he was doing and to give him a high five for me. She actually has done it almost everytime I've asked her. My mom drove Kegan on her bus when he was going to school in town instead of Smith River. My mom said Kegan was very good on her bus and was excited to have Everett on her bus too. I just wanted to tell you how grateful I am to have met and experienced some love from Kegan and I wish him the best future. I truly fell in love with this kid. I also saw his Kindegarten picture and that kind of pushed me over the edge;)

have a nice day,

with love ashley herrera

Magic Moments


What makes Kegan Lovin' so special? Because the moment that he gives it to you, you know he's connected, it's real, and he truly loves you. This beautiful moment of Kegan giving his mom, Wendy, some precious, precious lovin' is priceless. It brought tears to my eyes. Kegan's family's love for him is so deep and unconditional that it transcends his autism. Kegan knows he is loved. Kegan feels that love, and most amazingly, he noticeably returns that love. He hugs, he kisses, he seeks out Mom and Dad (and even me sometimes... *bliss*) for special moments of cuddling and closeness.

Thank you so much to Carlene Lacy of Mamarazzi photography in Crescent City, CA, for this magical photo. It captures Kegan's love and happiness with his mommy so perfectly.

Wednesday, September 14, 2011

Guest Blog Posting, by Wendy Going

From Kegan's Mommy's awesome new blog, "OMG Did You Really Say That? (http://kwitcherbichin.blogspot.com):

This couldn't wait




I have a very close friend of mine that is an amazing writer. (Check her out at http://.deathbycupcakes01.blogspot.com) Anyways she and I are writing a book about my families journey with Autism. My friend is always writing funny little stories about the time that she has spent with my kids as their nanny.
A few days ago she wrote a really funny story about how my oldest son (Kegan has Autism) would always try to sneak down stairs while the other kids were sleeping.
She went into silly details on the process in which he would try to sneak and so on... (like I said she is an amazing writer I almost pee my pants every time I read one of her blogs so you can imagine how detailed this sneaking episode was)

(http://keganspage.blogspot.com/2011/09/kegan-tales.html)

I was reading the comments that were made about the story and she was criticized for not making him take a nap with the other kids instead of making him stay upstairs.
This is what was said:

"it never occured to you to just let him go and see what happened without the drama? Or "Oh, you're taking a nap too! Thank you Kegan." I thought you were more devious then that."

and

"I know you can't force a child to take a nap. But, if he thinks that is what you want, he might have been more compliant to go upstairs and leave the others alone."



I was a bit irritated by this because she was doing everything in her power to help the other kids get some quality sleep. Kegan is very strong willed. I wish there was a "sleep when I tell you to sleep" mode that I could have put him in. That didn't come until years later when I went to a doctor and begged him to give Kegan something to make him sleep. There were times that he would not sleep for days at a time. Picture this... the entire family trying to sleep while kegan took everything out of the refrigerator, drawers and cabinets while screaming EEEEEEEEEEEEEEEE and clapping so loud that it sounds like a rock hitting your windshield from a semi-truck tire. So the other kids needed their peaceful afternoon naps.

Thank you DANI!!!!!

The Kegan Zone: Kegan & Everett: A Love Story

The Kegan Zone: Kegan & Everett: A Love Story: Tethered to a friend Written by Kelley Atherton, The Triplicate March 17, 2010 10:26 am Dog accompanies autistic student to grade school Ev...

Tuesday, September 13, 2011

Kegan & Everett: A Love Story

Tethered to a friend

Dog accompanies autistic student to grade school

Everett, an autism service dog, lies next to Kegan Going, a second-grader at Smith River Elementary School. The Daily Triplicate/Bryant Anderson
Everett, an autism service dog, lies next to Kegan Going, a second-grader at Smith River Elementary School. The Daily Triplicate/Bryant Anderson
Wendy Going noticed her son Kegan had a natural inclination toward animals.

Whenever Kegan saw an animal he would start making sounds — talking in his own way. This was unusual for the boy because most of the time he’s silent, his mother said.

Kegan is autistic.

This week, Kegan, 8, brought his autism service dog Everett with him to Smith River Elementary School for the first time. Everett is expected to help Kegan stay calm and safe, both inside and outside the classroom.

It was also a chance for Kegan’s classmates to be introduced to the golden retriever and how they should act around him.

“I saw how animals had an effect on him,” Going said. “He’s more vocal ... when animals are around he makes sounds.”

“I don’t know how medically,” she continued, “but that’s the way it seems to me.”

Since Everett has been in Kegan’s life, the difference has been “amazing,” she said.

Before, if she or her husband came into Kegan’s classroom, “his day would be ruined.” With Everett by his side the last few days at school, Kegan has had no reaction to Going sitting a few feet away.

“To be able to sit here and him sit at his desk,” she said, “that was never possible before.”

Community helped raise funds

Everett has been in training since he was a puppy to become an autism service dog, explained his trainer, Kati Rule-Witko, who is also an autism specialist.

The Going family applied to the Autism Service Dogs of America, a non-profit based in Lake Oswego, Ore., and was accepted to receive a dog about a year and a half ago. They then had to raise $13,500 to pay the service dog’s training and other fees.

The Goings had a “bachelor and bachelorette auction” at Elk Valley Casino in November 2008 that raised $9,000, said Wendy Going. The rest of the cost was made up in family contributions and donations.

Most people probably think of service dogs for the blind. However, in the last 30 years, they have been trained to help those with hearing impairments, social disabilities and limited mobility, according to the Autism Service Dogs of America Web site.

To learn more, go to www.autismservicedogsofamerica.com .

Starting as puppies, service dogs live with volunteers who train them in basic obedience. When they’re old enough, they get specialized training to prepare them for being with an autistic child.

Several weeks ago, Everett moved in with the Goings and became accumulated with the family. Then on Monday, Everett went to Kegan’s second-grade class.

A constant calming effect

Kegan was 2 years old when he was diagnosed with autism, Going said.

“I thought he was going deaf,” she said. “He stopped responding to his name.”

A doctor told Going that Kegan’s hearing was “perfect” and suggested that he might be autistic.

Researching the development disorder, she found out about autism service dogs. Going said she learned that a service dog can have a calming effect on an autistic child because it’s a constant presence in his or her life.

Autistic children like Kegan can have trouble dealing with a change in their routine. Change can over-stimulate the brain, but having service dogs constantly by their side reminds them that one thing hasn’t changed.

“The environment will change, but the constant is always there,” Going added.

Instructional aide Perry Cooper helps Kegan in the classroom. The Daily Triplicate/Bryant Anderson
Instructional aide Perry Cooper helps Kegan in the classroom. The Daily Triplicate/Bryant Anderson
When an autistic child is escalating into a fit, the service dog will on command place his head or legs on the child and relieve some of that pressure building inside him or her, Rule-Witko explained.

“They’re seeking to relieve that over-stimulation,” she said, that otherwise might result in children hurting themselves.

When this happens, the dog will “go over and nudge the child,” Rule-Witko said.

“That re-directs the child,” she said, “to have a different train of thought and get them out of that bad place.”

Kegan also feels the need to touch people’s hair or he twists his own, his mother said. When he met Rule-Witko, the first thing he did was try to touch her hair.

When he does this, Kegan is trying to calm himself down from something that is over-stimulating, Rule-Witko said. But, it’s not always appropriate to touch someone’s hair, so he can pet Everett.

Safety and more independence

Everett also keeps Kegan safe. Being tethered to Everett, he can’t run away, which he — like many other autistic children — has done, his mother said.

As the bond between the two grows, Everett will be able to sense if Kegan is having a seizure, a result of of his brain being over-stimulated, and alert an adult.

“That’s a big hope for the family,” Rule-Witko said.

Because Kegan is tethered to Everett, she said, his parents can give him more independence and know he’s safe.

“The child becomes more independent and confident,” she said, “something they wouldn’t have been able to develop.”

It’s been hard to go on family outings or go on vacation because Kegan needs so much attention, Going said.

“The younger kids have needs too,” she said, “that gets lost.”

This past weekend, the whole family went to the mall and zoo in Eureka, something they had not done before.

Learning to live with Everett

Rule-Witko is spending three days, ending today, at the school helping Kegan and everyone else get used to Everett and understand his job as a service dog.

“The fear is the unknown,” she said about bring a service dog into a school. “I spend three days answering questions about how to handle situations.”

Rule-Witko explained to all the students and staff what a service dog does and the rules for being around him, such as no talking to or petting Everett.

he vest Everett wears identifies him as a service dog.  The Daily Triplicate/Bryant Anderson
he vest Everett wears identifies him as a service dog. The Daily Triplicate/Bryant Anderson
A dog can be a big distraction for children, she said, but added, “give it a week and it will be an everyday thing.”

Kegan’s teacher, Nicole Cochran, said that Everett’s presence in the classroom hasn’t required much of an adjustment.

At first, the other students were excited having Everett around and wanted to play with him, but Cochran told them “he has a job to do just like they have a job to do.”

After a while, she said they probably won’t even notice Everett is around.

“It will be part of their school life,” she said.

Principal Paige Swan said that everyone in the school was made aware that a service dog would be on the campus.

Right before Rule-Witko and Everett were set to come to Smith River School, there was some hesitation on the school district’s part, Going said.

Swan said that the proper protocols had to be gone through to avoid any liability issues and make sure everything went as “smooth as possible.”

Kegan will likely have a service dog for the rest of his life because of the comfort and reassurance it gives him, his mother said.

“Once that connection has been made,” she said, “you can’t break it.”


Monday, September 12, 2011

The Kegan Zone: Kegan is....

The Kegan Zone: Kegan is....: Share your Kegan stories with him and his family! Email your story to deathbycupcakes1@gmail.com and Dani will publish it on his blog. If ...

Kegan is....

Share your Kegan stories with him and his family! Email your story to deathbycupcakes1@gmail.com and Dani will publish it on his blog. If you want to include pictures, send them also to this email address. Let him know you're thinking about him and are remembering the funny, silly, Kegan-esque things he does.

Kegan is not Autistic; Kegan is Kegan, and he happens to have Autism.

Sunday, September 11, 2011

The Kegan Zone: Kegan and the Cloak of Inviibility

The Kegan Zone: Kegan and the Cloak of Inviibility: Kegan's secret power is invisibility: If he closes his eyes, you can't see him. Really. I swear. Or, actually, HE swears. And I tot...

Kegan and the Cloak of Inviibility

Kegan's secret power is invisibility: If he closes his eyes, you can't see him.

Really.

I swear.

Or, actually, HE swears. And I totally believe him.

When he's trying to be sneaky and he's busted doing something naughty, he will close his eyes and stand very still. When you say, "Kegan, I can see you..." he keeps his eyes closed and waves his hand back and forth in front of his face, just to make sure he's still invisible.

When you tell him, "Sorry, dude... still see you!" (which, yeah... I do. Because I love messing with him) he puts his hands over his eyes, making doubly sure that he's not only invisible, he's like Super Invisible, with a unitard and a cape and batcave. (And a sidekick. Which would be, sadly, me.)

When you say (and yes, by "you" I mean "when I say" because this is what I actually do say, every time) "Hmmmm... where did Kegan go? He was just here!" he keeps his hands over his closed eyes and walks backwards towards his original forbidden destination.

Tricky, yo.

It's an act that kills, people.

And works.

It's too awesome to not work. Kegan's Cloak of Invisibility is a mad skill. You have to reward that kind of talent.

And by "you", once again, I totally mean me.

I can still see you, Kegan!!!!

Saturday, September 10, 2011

The Kegan Zone: A Look At My Life Lately...

The Kegan Zone: A Look At My Life Lately...: Have I mentioned that I'm really amazingly cool? Because I totally am. Share your stories about my awesomeness on my blog! Email them to ...

A Look At My Life Lately...

Have I mentioned that I'm really amazingly cool? Because I totally am. Share your stories about my awesomeness on my blog! Email them to Dani at deathbycupcakes1@gmail.com so she can share them here and Mom and Dad can read them to me. Love, Kegan


I'm pretty sure no one notices that I find her tiny hands so sweet and soft. Maybe if I just sit here holding her hand, no one will notice... I mean, she's not quite as fun as a laundry basket or an elephant, or even youtube, but she does have her moments.






For some reason Mom and Dad decided that they hadn't inconvenienced me quite enough so they brought home another sister. Really? Another sister? I explicitly told them I wanted an elephant. She is pretty small, though. And soft. I guess she's okay.




This is me last summer with my service dog, Everett. I was watching my brother Charlie play hockey. Obviously, I'm thrilled with the whole thing. So is Everett. And Charles.


Share a Kegan Story!

If you want to share a story about Kegan on The Kegan Zone send it to me in an email (deathbycupcakes1@gmail.com) and I will post it on his blog. I know his family would love to read about your memories of him and they can read them to Kegan when they visit him.


The Kegan Zone: Kegan Tales

The Kegan Zone: Kegan Tales: Some of my most memorable moments while working as a nanny for the Going family were those I spent matching wits with Kegan. Kegan's seren...

Kegan Tales

Some of my most memorable moments while working as a nanny for the Going family were those I spent matching wits with Kegan.

Kegan's serene and peaceful face is a deceptive mask for the cunning, manipulative, hilarious little monster that lurks within. He is a worthy opponent and often made me think, hours later, about the absurdity of the fact that I had lost an argument with a small child who not only had severe autism, but couldn't talk. And trust me, I lost Every. Single. Argument.

(And while I was lying in bed at night pondering this fact, I'm sure Kegan was lying in HIS bed, snickering at the fact that once again, he had made me his bitch.)

One of our most popular stand-offs was The Battle Of The Stairs. The living room and kitchen were upstairs and the kid's bedrooms were downstairs. Most of the time this wasn't an issue. Kegan was perfectly happy being upstairs with his brother, sister and me. We would watch cartoons, eat Goldfish crackers, dance to the Wiggles, whatever... and Kegan was perfectly content.

Until it was time for his baby brother and toddler sister to take their naps.

I would put Charles and Venice in their cribs, tippy-toe upstairs, and that's when Kegan would declare war.

First he'd casually head to the stairs, glance over at me, and then begin to skip down the steps.

Me: "Kegan, no. Stay up here with Dani."

Kegan: *sighing heavily, turning around, and slowwwwwwlyyyy coming back up*

1 minute later, he would walk ohhhh soooo casually to the stairs, glance at me, and skip quickly down the stairs.

Me: "Kegan! No stairs! Get back up here."

Kegan: *glaring at me and coming back up the stairs*

1 minute later, he would walk backwards towards the stairs, looking everywhere except at me.

Me: "Kegan, walking backwards doesn't fool me. I know what you're doing. No stairs."

Kegan: *shaking his hand at me* "No no no no no!"

Me: "Yes yes yes yes yes! Get back over here!"

I would attempt redirection, bribery with snacks, threats, blackmail, and sitting on him while tickling the crap out of him. Meanwhile, he was:

Walking backwards towards the stairs with his eyes closed.

Dropping to the floor and crawling to the stairs.

Dropping to his belly and comando crawling to the stairs.

Lying on his back and scooting himself to the stairs.

Lying on the floor and rolling to the stairs.

Sitting at the top of the stairs and sobbing pitifully.

Sitting on the second step and having a tantrum.

Lying on the third step and whimpering.

Sitting on the fourth step and screaming, "NO NO NO NO NO!" at me.

Standing at the top of the stairs and pointing down the stairs while bawling. (No tears, fyi. Through any of this. Just a lot of noise.)

Walking over to me, hugging me, kissing me, then going to the stairs and casually heading down.

Having a massive fit on the way back up.

It usually ended with him lying on the floor at the top of the stairs, kicking the railing and yelling at me until Venice would climb up the stairs carrying her bottle and the baby would begin howling in his crib.

(All this usually took about half an hour.)

At this point Kegan would give me a triumphant look and hop down the stairs, where he would stay for roughly 1 minute before coming back up and never going back down again, until the next day when it was time for Charles and Venice to take their naps.

The remainder of the day would be spent with two really whiny, tired babies, one really whiny, tired nanny, and one really smug Kegan.

Dani: 0

Kegan: Infinity

Sunday, September 4, 2011

Kegan


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.”

Pause.

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.