Did You Ever Wonder?

Have you ever wondered what the non-verbal person with autism is thinking or have you ever been too afraid to talk to the person in the wheelchair because you don’t know what to say? Well I have! But Mr. “blunt” Jonny doesn’t hold any punches. When I signed Jonny up for football when he was in Jr. High School, his coach was in a wheelchair from a truck roll-over. When Jonny finally met the coach face to face the first thing out of his mouth was “Hey what happened to you? Did you fall and slip in the bathtub or something? The Coach Dave nearly fell out of his wheelchair because no one had ever dared to even mention his condition. We laughed. We should all learn to adopt some of Jonny’s clarity, honesty and wisdom in our approach to special needs people.

And I keep learning more every day. There is no instruction manual for being a special-needs mom. Truly, what doesn’t kill you makes you stronger.

Jonny’s Beginning

My relationship with my sister in law wasn’t great at first. She was the first to suggest that Jonny may have autism at the age of 2½. I didn’t think there was anything wrong with him, even though looking back; he didn’t interact with the 3 older kids. He was content to stare at the fan, being a quiet “good baby”, or so I thought. I thought she was just comparing him to her same aged daughter, Julia. You know – the ‘my kids better than yours’ game. How naïve I was! But, being a good and responsible mother, I reluctantly took him to the doctor, while he kicked and screamed all the way, to have him checked out. Surprisingly, he said Jonny had autism and to bring him back in a year. Thank God, Anna convinced me to get a second opinion. I would have had to wait that year and miss out on the most important early intervention year of his life. Talk about swallowing a little pride. I made up for my attitude though and began the diligent quest for information, attending as many conferences as I possibly could and became a sponge, soaking up everything I could, which ultimately was the foundation for Autism Today. If he turned out to have autism, which I still doubted, it would put him ahead of the game.

Relationships are Everything!

(continued) No sooner than Mrs Spaulding called on my son, did the words shoot out of his mouth. “Mrs Spaulding, he said” “I think this is boring!” I knew in my heart that he was just being truthful, but ohhhh the glares I got from the other parents, and of course Mrs. Spaulding. “You know young man, she scolded, that was very disrespectful”. How could I explain his autism in this desperate situation to everyone that was there? I felt like grabbing his hand and leaving, but I hung in there.
After the moment cleared, and the air seemed to settle down, once again his hand flew in the air. Mrs Spaulding, “What kind of dinosaur is it?” he asked in regard to her book? Thank God! I was so relieved he could also ask something that was appropriate. After the class was dismissed and the library event had come to a close, I took Jonny by the hand to apologize to Mrs Spaulding, trying to explain to him that while he may have been bored, saying it out loud still probably hurt Mrs Spaulding’s feelings.

(To be Continued)

Relationships are Everything!

As a mom, wife daughter, sister, friend, aunt and colleague, I know that relationships are everything! Relationships are built upon communication, which is also one of the largest deficits that those with autism and special needs children face. Whether they are able to talk or not, they are still able to communicate. Yet they need us, as caregivers, instructors, parents, siblings and peers, to help them bridge the relationship between them and the world. Through the power of effective communication mixed with empathy and understanding, we can facilitate and enhance the quality of these relationships. Here is an endearing story of a librarian and my son Jonny, and how a relationship was strengthened one day in our community.

MRS SPAULDING:
To paint a picture for you, my son Jonny was in the 4th grade when his class took a field trip to the library to hear a famous author, Andrea Spaulding talk to the class. She had all the kids sit on the floor while she read them tales from her latest book. When she was done it was time for questions and answers. The kids eagerly popped their excited hands up into the air to ask questions. After about three questions, there was Jonny’s hand frantically waving. I cringed, what could he possibly want to ask.

To be continued…

Spank you, spank you very much! (Continued)

(Continued)
Of course we were laughing harder than they were! Everything that could and would have gone wrong, did, but that was somehow okay. Jonny was accepted for who he was and is. A child with autism. When their song was over, his classmates filed off the stage as they had rehearsed, but not my Jonny. He was still doing his “thing” weaving in and out of the kids having a grand old time and the audience applause became very loud. Jonny all of the sudden became very aware of the audience, walked out to center stage and shouted at the top of his lungs. “Spank you, spank you very much!” and bowed. Afterwards, Caraly pointed out that maybe he had some sensory issues and the clothes were probably bothering him which is why he was acting out. From then on I dressed him in more comfortable clothes for him to wear, especially before going on stage! Sometimes as parents the obvious is oblivious to us and we miss it. Does anyone else ever have situations like these happen with their autistic children?

Certainly, these are stories to cherish, as we all grow in knowing what works for our children and what doesn’t!

Spank you, spank you very much! (Continued)

Well the night of the concert I decided to dress him up nicely in a little blue suit, white shirt and tie. He looked adorable, but he kept wiggling and fidgeting around and I thought he was just excited. We arrived at Millennium Place where the concert was taking place, dropped Jonny off with his aide, Caraly and took our seat amongst the other 500 parents. When it came time for Jonny’s class to go up on stage the class marched out in single file, except for Jonny who was darting in and out of the other kids throughout the line totally oblivious to the crowd of people. All of the children walked to their appropriate spots on the bleachers, except Jonny who kept jumping off the top bleacher, ran around the front of the bleachers, climbed back up to his spot pushing the kids out of the way and did this at least twenty times during their performance. Moms and dads were laughing hysterically and carefully glancing around to see if we minded because they didn’t want us to think they were laughing “at” him.

To be continued…

Spank you, spank you very much!

When my son, Jonathan was in kindergarten he was fascinated with Jim Carrey. In fact, he watched every single one of his movies, Ace Ventura Pet Detective, The Mask, Liar Liar and so on. He watched them day in and day out again and again memorizing it word for word. Parents, if you have kids with autism, you know exactly what I mean. Back in those days Jonny would perseverate which means do the same, repeatedly on whatever interested him the most and Jim Carrey was IT. I was a new mom of a kid with autism at the time and didn’t understand the disorder to say the least. He was all set to be in his first kindergarten Christmas play and had rehearsed his part over and over again with his aide, Caraly. He memorized his part completely. He was to stay in a single file line behind his classmate, Justin and in front of another, Cindy. Next, he was to follow the kids onto the stage, march up to the top row of the bleachers to his predetermined spot, sing their school song and then follow Justin in the line nicely off the stage.
To be continued…

One of Susan’s Many Stories

The Velocity of Generosity – My life as “Sis”

Around the age of three or so, Karen was delegating this task to me of creating these bridges and fancy buildings in the sandbox outside – our Mom watched from the kitchen window. There we were playing there together in the sandbox creating a fortress. She was the idea-maker and I was the worker bee. We both have lots of creative ideas now, and I am still one of her special “bees”.
I remember when Karen broke her arm – she was 6 or 7, playing on our swing set outside in the back yard. The kids were monkying around and somehow; the slide fell over on her arm. It broke in three places – the doctors nearly had to amputate! What a terrifying ordeal that must have been for Mom. I remember being there at the doctor’s office and watching them rip and tear into her shirt to get her arm out as fast as they could to see the damage. “What a waste of a shirt”, I thought. The trip to the doctor had really interrupted my day too. It was very annoying. What really annoyed me was, since it was getting close to Christmas, the doctor gave her a really awesome sucker shaped like Santa Clause. It was the most beautiful sucker I had ever seen! Well, when we got home, I moped and complained and wined because I didn’t get one too. I just looked at my sister, her arm fully cast, and felt sorry for myself. I complained a lot!
She gave me that sucker! She has always been this way and still is today. She must have taken after our grandmother, Mama Nesse.
I am so fortunate to have Karen as my sister!

Soup from your Heart & Soul!

It seems like eons since I talked to you directly. I know you have been busy with the child in your life with autism and I have been busy redesigning my website to make it more user-friendly and interactive. Now that Autism Today is becoming more streamlined, I have much more time for you and even my children too. In fact I took my daughter, Christina, out to dinner last night and we had the best heart to heart talk we have ever had. She even came up with a magnificent idea.

“Mom, she said, people don’t like to get a lot of email telling them to buy stuff all the time. They want to read fun stuff, share stories and read jokes. You’re a Chicken Soup for the Soul co-author; in fact, you are the only Chicken Soup author with a book about children with special needs, why don’t you send out stories for people to share? Then if they want to go to the site to check things out, just have a link back to the site”

Brilliant! I replied. In fact, I was at lunch with my friend’s wife and another mother last week and what do you think we chatted about? Our stories! You know, the time Jonny got stuck in the pot and we had to squeeze him out by putting baby oil all over him. The time another child almost caught their house on fire, and oh yes, the time the bathtub overflowed and the water dripped through to the floor below! We’ve all been there.

So here is what I am proposing. I want to hear YOUR stories so that we can share them with others, “Soup from your Heart & Soul”, style! I am going to create a blog entry on the Autism Today site and invite everyone to submit your (500 words or less) story for possibly sharing with our readers each week. We will call this the “Soup from Heart and Soul”. Who knows, we may even make a book or E-Book out of them with your permission. By sharing your story, you offer hope, inspiration and a vision for dreams that really can come true.

Also, if you have anything you want to talk with me directly about you can email me at karen@autismtoday.com and since I’m not getting and having to handle all of the administrative emails I used to get (things kind of snowballed), I now have time to schmooze with YOU!

Ta ta for now and here’s to successful, happy parenting, teaching, treating and supporting our many loved ones on the autism spectrum.

With much love,
Karen Simmons
CEO, Founder, Autism Today
“Chicken Soup for the Soul, Children with Special Needs”

PS. Don’t forget to visit our new blogs, forums and read the forever changing home page!

My Sons Letter of Apology to Bus Driver (when he cut the bus seats)

When Jonny was in the 6th grade he was told he had to write a letter of apology to the driver before they would let him ride the bus again.  This letter certainly opened our eyes to the abuse that many children with autism may never be able to speak of.

May 17, 2001

Dear Pat,

I am sorry for the seat, but I got angry because of Nicholas, because he’s annoying me sometimes (99.9% of the time he is) and he’s on the first bus I get on to go to school. He throws leftover chocolate Jello pudding (in a container with holes on the lid) at me when he’s getting off, and it gets my clothes dirty (mom doesn’t want me to wear dirty clothing). While he’s on, he and his friend gang up on me (and, occasionally, tell other big kids to do it) and they occasionally move from seat to seat to get at me! They move ahead, one pair of seats at a time, bonk me on the head, and rush back to their seat. Fortunately, his buddy had to move to the front seat. And sometimes, still in their seats, they throw assorted junk at me (jello pudding, paper balls, etc.) sometimes they miss. He sometimes says I live in a garbage dump, a cardboard box, and on certain times he calls me “gaylord,” gay not meaning happy. Matt told me to say “gee, thanks, I’ll remember that!” when Nicholas says I am a gaylord. He sometimes swears. The one kid I saw and liked in his family was Nicholas’s kid brother! Since I can only sit in the 4th seat or further up, I’m a supreme target. Fortunately, they have never stolen my lunch yet. The reason I made those holes was because I needed to do something to release my tension. Mrs. Lorenz and I talked about what I could do instead of damaging other people’s stuff.

Sincerely,
Jonny Sicoli

Contact Info

Toll Free: 1-866-9AUTISM (928-8476)

New York Office: 244 5th Avenue New York, NY 10001 Fax: 1-780-416-4330,

Canadian Office: 11007 Jaspar Ave Edmonton, Alberta T5K 0K6

Copyright 2017 © All Rights Reserved

1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk