Shannon Responds to Michael Savage with Much More Grace Than I Have to Offer Right Now

Dear Mr. Savage,

My name is Shannon Johnson and I am the proud parent of a 13 year old son with autism.

If you met my son, you would probably think that he was very funny, as he would not hesitate to smile and call you weird, which is his best attempt at a compliment. He would find you intriguing because you have facial hair and he would want to touch it with his sticky fingers that usually smell like his last meal. He seems taller than he actually is because he walks on his toes. It makes it hard for him to wear shoes, but he will tolerate flip-flops in the summer and slip on shoes in the winter, as long as he can take them off as soon as he gets in the car or enters the house. Although he eats like a horse and I literally have to keep a lock on my refrigerator door, he is skinny and underweight, probably in part because of his severe digestive issues. Without a special diet of gluten-free and dairy-free foods, and a multitude of supplements, enzymes and medications, he wouldn’t even digest a fraction of the food that passes his lips. For the majority of his life, he has experienced more restrictions, seen more physicians, been poked more with needles and been tested more by psychologists than most adults can ever imagine. Through it all, he has been braver and more courageous than anyone I have ever met.

Naturally, it disappoints me to hear someone of your intelligence and of your influence describe children with autism as “brats”. I can only assume that you are referring to the fact that some children with autism are known to have behavioral meltdowns or tantrums.

Honestly, my son is one of those kids. If you saw him in public having a meltdown, you would probably deduct that he was screaming because he couldn’t have a new toy or another ice cream cone; that he was using his lungs to manipulate his parents into giving into his selfish requests. However, you would be completely wrong. Instead, he might simply be reacting to the fact that the sights and smells, the sounds and colors in the mall, or at the grocery store, have overwhelmed his already over-stimulated sensory system and he needs to retreat to the safety of the car right away.

In this heightened moment, his anxiety would be revved up and he would lose his ability to verbally communicate his needs. He would then rely on his tears to inform me or his father that his system had had all that it could take, no matter what goodie we might offer, no matter what reward lay in our cart….And then, once he was safe away from the sensory assault, he might ask, as he has in the past, “What can we do next time so that it’s not so loud in the store?”……Certainly, we have even sat in the rain to eat a meal outside when the restaurant lights were too bright or the music inside too loud for our very sensitive boy.

If you stood outside my son’s door sometime, Mr. Savage, as I invite you to do if you are ever in my neighborhood, you might hear my son ask God in heaven to “please make me get better soon.” Not really the words of a “brat”, Mr. Savage…Only a very affected child who doesn’t feel good most of the time, and would do just about anything to just be like everyone else.

Sincerely-
Shannon Johnson
Co-founder, www.foggyrock.com

Shannon Johnson's Thank You Campaign

Shannon of FoggyRock has really good idea for all of us:

I've read too many articles lately about poor treatment of our children on the spectrum to not address this issue.  First, there was the young student who was "voted" out of his class by his teacher and peers.  Next, there was the parent who was kicked off an American Airlines flight with her ASD toddler.  Then, today, I read about a member here on Foggyrock whose family was asked to leave a restaurant because another table of patrons was unhappy with a few minutes of very understandable discontent from her autistic daughter.  It is enough to make a special needs parent afraid to leave home......

It has also made me reflect with genuine gratefulness on the many, many outings and excursions with my ASD son that could have been disastrous, but were successful and memorable because of the kindness and acceptance of those around us.  I remember the flight attendant who allowed my son and I to stand in the back of the plane most of the flight because it was more comfortable for Wynn and less disturbing to the passengers seated around us.  There was the security guard at the mall who watched from a distance as my son had a major meltdown and then nodded and went on his way once he read my son's Unlocking Autism t-shirt.  Most recently, there was the check-out gal at Walmart who didn't mind when my son held tightly to his bag of frozen fruit and laughed out loud when he called her weird.  It is folks like that who allow me to experience joy in those experiences instead of embarrassment and shame.  Because they can extend acceptance and grace, my son can participate in a world that is equally his.

And so, with the good Southern manners that my mama instilled, I have decided to begin a Thank You campaign.  Each and every time Wynn and I have a successful encounter or visit with a kind and helpful person or business, I'm going to send a thank you note to demonstrate our gratitude.   I want my community to realize the impact that their attitude and behavior have on my son and my family.  I want to affirm what is good in hopes of preventing the negative actions that seem to have become daily news features.

If you think this is a good idea, I would encourage you to do the same.  I'd love to hear of your experiences and your responses as well.  Our children have so much to offer, but if we are not pro-active in our efforts, the negative reactions of the uninformed and ignorant could be the only message that gets heard.

For a sample of my very first Thank You note, see:
http://www.foggyrock.com/PersonalPages/Composition/1776#showcomp
Sincerely and Gratefully,
Shannon Johnson

And if you have not set up an account on FoggyRock yet, give it a try.

Mother's Day: Shannon Johnson is Un-invited

Shannon Johnson is a Maine autism mom, founder of the autism social networking site FoggyRock.com, and daughter of Nancy Cale of Unlocking Autism.

Her piece on her experience this Mother's Day really brought home to me the continuing quiet sacrifices that autism mom's make daily, hourly, for the children that they love so much.

Happy Mother's Day to you mom's who have joined the club that none of us wanted to join, and earned the title "Loving Mother" in a way that few have.

Happy Mother's Day Shannon.

Un-invited
by Shannon Johnson

Wynn's teacher gave me a head's up about the Mother's Day luncheon planned for the next week. She wanted to be certain that I set the time and date aside so that I wouldn't miss the festivities. Maybe she also knew that Wynn would need some extra time to process the event. Well, he did.

The first time I mentioned the party he screamed, "No! Don't come!". When the official invitation arrived in his lunch box, he screamed, "I said, don't come! I'll be really mad if you do!" When Wednesday finally arrived, and I brought up the topic of the big day, he screamed, "You mean you have to come? It will ruin my day!"

Now, for the best part of the last 13 years, I have gone out of my way....certainly, I have ignored, looked the other way, justified, set aside, left alone, let go, avoided, adjusted, adapted, hesitated, rotated, navigated and even subjugated.....all in an attempt to NOT ruin my son's day.....so I knew that attending the luncheon (never mind that it was in my honor) was out of the question.

I would again, do everything in my power, not to ruin an otherwise good day.

Wynn just hasn't understood, ever, the subtle inferences of social occasions. Why would Mother's Day be so important when his own birthday only means he can have a dessert or two? He attaches no significance whatsoever to holidays, ceremonies or traditions. If I showed up at his school at 12:15, as the invitation advised, I would simply be someone being somewhere she didn't belong. If he handed me anything, it would be in an attempt to move me quickly to the parking lot and back into the oblivion where I exist until he steps off the bus and asks for dinner. In his world, the one he daily constructs to bring meaning into his chaos, he has no place for luncheons, and no room for an annual display of sentiment as dictated by Hallmark or even Congress.

So, I meet briefly and covertly with Wynn's teacher on the front lawn by the parking lot. She hands me a hand-painted clay pot overflowing with budding violets that she promises Wynn planted. There is also a package donning tissue paper and a card that I open in the car. In a curly font are the words of Emily Dickinson, probably written for her own worried parent.

"A mother is one to who you hurry when you are troubled".

If Wynn's calls for "more hot" water in the tub, for more lima beans in his plate, for snuggles and songs, for stories and jokes, for answers and action are ushered my way, which they are, then I guess, luncheon or no luncheon, I know, at least, that I am, in no uncertain terms, his mother.......And knowing that is celebration enough for me.