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shannonj - A Hopeful Heart

City: Harpswell
State: Maine
Country: USA
Member since: Jan 23, 2007
Last logged in: Dec 01, 2008

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Mother, Biomedical Intervention, OCD, Anxiety, Autism Spectrum Disorder, SCERTS, Running

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shannonj's Page URL

http://www.foggyrock.com/MyPage/wynnsmom

shannonj's Bio

My name is Shannon and I have a great husband and 2 amazing kids.

My oldest, Wynn, has autism and still struggles, after all these years of treatments and therapies, with anxiety and aggression. At his best, he is funny, intuitive and sensitive.

My daughter, 12 year old Haley, is strong and independent, creative and musical. She has been a shining example for Wynn and taught him many of his first words and skills by sheer example.

Steve is my husband of 19 years and partner in this endeavor to be a family in this crazy world of autism. Out of a need we had to have better communication with Wynn's team members, he created a web application called iAbida.com. It has been a project from his heart, and he makes it available to all families, around the globe, for free.

And me? In spite of being a terrible klutz, I have learned the fine art of juggling....motherhood, advocacy, household management and working from home. Foggyrock is my latest project--to fulfill my own need to be associated with other fantastic folks, like you, who I knew were out there.....Thank you for allowing me into your life through this community.

Favorite Compositions (6)

Holiday Costs

- New closet doors $200
- Repairing four walls with holes - $100 and hours of ...Read more

By stevej on 01.01.70
Comments(5)

How to Make a Friend

My son Wynn has autism. As a result, his social skills are stunted. Neverl...Read more

By shannonj on 01.01.70
Comments(10)

Eclipse

Every once in a while, the planetary structures all come together in just th...Read more

By shannonj on 01.01.70
Comments(2)

Roller Coaster

My 12 year old son struggles, for some reason, with understanding the difference...Read more

By shannonj on 01.01.70
Comments(5)

The Snow Dance

I’ve heard the weather reports and recognize that it is surely inevitable that I...Read more

By shannonj on 01.01.70
Comments(13)

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shannonj's Compositions

Still Amazed

by shannonj on 11.30.08 - public

As I was wiping the counters and putting away the last of the breakfast paraphernalia, I noticed Wynn reach into the silverware drawer and retrieve a ...

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As I was wiping the counters and putting away the last of the breakfast paraphernalia, I noticed Wynn reach into the silverware drawer and retrieve a spoon.  I turned to watch as I knew there was nothing around to eat and wondered what his intentions could be.  I also wondered if someone had accidentally left something delicious and yet illegal sitting on my desk or in the family room.  Recently, Wynn had devoured almost an entire bag of semi-sweet Ghiradelli chocolate chips and he was literally dancing on the ceiling until 3 am.  That event just about did us in and I couldn’t bear another night like that.

So, when he began poking around the stovetop edges with the spoon, I was understandably curious.  He wasn’t, for once, using a spoon to satiate his appetite but as a tool to retrieve or recover something lost.  “It’s not working, mom.  What will work?  Help me find my green thing.”  I absolutely loved the idea that he had tried to solve his dilemma before asking for help.  I loved the idea that his first inclination was not to scream, or melt, or pull me, without words of explanation, in his direction.  I imagined a little chain of problem-solving sparks igniting in latent parts of his brain and I smiled.

“Try a butter knife from the drawer. It’s thinner, bud.”  I advised.  As he reached for a knife, I was taken back in time to the days when each and every step of a sequence had to be taught, then rehearsed, and rehearsed again and again and again.  I remembered how Wynn didn’t seem to understand that he even had hands and how he only recognized their existence when we held them and manipulated them with our own hands---to turn a knob, to zip a coat, to wave goodbye.

“Show me how to find the green thing.” He asked, believing like always that mom could do anything, solve anything, make everything right.  He watched me as I slid the knife gently sideways along the edge of the black stovetop.  I was as curious about what this green thing could be as he was anxious to be reunited with it.  Then, like the magic, a tiny evergreen needle emerged from the dark.  Before I could look long enough to appreciate the beauty and value that attracted Wynn, he had snatched it up and flung it far across the room.  “There.” He sighed.  And that was that.

Wynn is 13 and taller than me.  He has gained 15 pounds over the past few months and shares the same size shirt as his father.  Yet his mind functions at a much younger age than his physique would reveal.  Still, some mornings, there are sparks.  Some days after breakfast, when I am numb from the chaos of his flurry of need, he reaches out for a spoon and amazes me.

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Foggyrock Newsletter: A Thanksgiving Sigh

by shannonj on 11.28.08 - public

Sorry that my Thanksgiving greeting is a bit belated, but sometimes getting through a holiday takes all of my energy. Common courtesy, I confess, is ...

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Sorry that my Thanksgiving greeting is a bit belated, but sometimes getting through a holiday takes all of my energy.  Common courtesy, I confess, is not a high priority in such situations.

Wynn has been thinking about Thanksgiving since the day after Halloween.  He counts his time on earth by birthdays, holidays, and any event promising something with frosting or covered with ice cream.  “I’m ready for pie!” has been his daily mantra for weeks and I have used any remains of my patience trying to curtail a meltdown in the midst of the Thanksgiving countdown.

I’m grateful, however, for the feast his teachers served last week as it took the edge off of his angst and he was better able to wait for our own dinner at home as a result….But, unfortunately, not quite long enough.  Tuesday night, as a goodnight wish, he asked to please have Thankgiving dinner for breakfast---PLEASE!  Years of living with this unique kid told me that he had definitely waited as long as he could.  Any additional attempts to postpone Thanksgiving would just not be pretty.  So while the kids slept, I whipped up a GF/CF pumpkin pie, corn, peas, carrots and stuffing—the real kind:  Stovetop Stuffing.  No, stuffing is not on his diet, but it is Thanksgiving and he had asked for it specifically because they had served it at school, and it tasted really good.   Plus, I was hoping that its presence would prevent him from noticing that there was no turkey on the table.  This vegetarian mom just didn’t have it in her this year….

Well, Wynn woke up a very happy boy on Wednesday morning.  Sitting like a king at a banquet table, he devoured three pieces of pie as an appetizer.  Then came stuffing, more stuffing and a little bit more stuffing (followed immediately by a handful of digestive enzymes—thank you very much Devon Houston!)…..Before I could offer any vegetables, fruit or bite of nutrition whatsoever, he pushed his chair away from the table and announced that he was full.  Job well done, I thought, as I place the remains in the fridge for tomorrow.

So today, on Thursday, the true Thanksgiving, I sigh.  First, because Wynn is temporarily satiated and content.  Second, because I have wonderful friends who have included us in their dinner plans today, even though Steve and I will shuffle back and forth from home to take turns hanging out with Wynn as the crowds and the noise are not his cup of tea.  And lastly, because, when I find myself full on potatoes and dressing, biscuits and apple butter, I can also save my vegetables for tomorrow.

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Look where Foggyrock is Showing up:

by shannonj on 11.27.08 - public

Foggyrock makes the list of social networks!
Check it out:
http://autism.wikia.com/wiki/Social_networks...

Embarrassing Mommy-Moments

by shannonj on 11.25.08 - public

Yesterday, after hanging out at home all day, I felt the urge to run into town and catch up on a few errands. Honestly, I was looking forward to a li...

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Yesterday, after hanging out at home all day, I felt the urge to run into town and catch up on a few errands.  Honestly, I was looking forward to a little time alone as well.  However, when Wynn saw me getting my coat, he decided he wanted to come along....and that was that.

I made him promise to be patient while I browsed the aisles at TJ Maxx, hoping to find a Christmas present or a stocking stuffer or two.  He agreed that he would not rush me and would use his inside voice as well.

When next we headed to Walmart, I reminded him that we were not there to look at the movie section.  Wynn has a history of getting very agitated in the movie section as there are so many movies that are not appropriate for him and he hates to be told "no".....So now, I avoid that part of the store at all costs.

Wynn did really well for me and it was actually fun to have his company.  I enjoyed pointing out things that he might have never noticed before and answering his questions about dog food, tinsel and old people "riding cars" in the store.

Just as we were about to pay for our purchases, Wynn suddenly needed to use the restroom.  I remembered the Family Restroom that I had noticed in the back of the store and was glad that there was an option to the public, multi-stall facilities in the front.  Wynn doesn't need assistance in the restroom, but he gets nervous being alone and he is too big now (at 13) to go with me into the lady's restroom.  Needless to say, we headed towards the back of the store.

Unfortunately, the Family Restroom was occupied.  We waited and waited, but soon Wynn's posture and dancing feet told me that we couldn't wait any longer. 
Glancing around, I noticed a men's restroom just around the corner of the Family Restroom and pointed Wynn in the that direction.  He grabbed my hand and before I could do anything about it, I was standing beside him and a long row of urinals!  "I'll wait right outside the door", I assured him as I raced towards the exit.  I was hoping that the incident would go undetected, but as I let the men's room door slam behind me, I was greeted by the wondering eyes of a curious bystander.  "My son is in there and..." before I could finish, Wynn had grabbed me again and pulled back into the bathroom!

"Stay with me mom.  I will be quick, I promise." Wynn argued.

"I can't stay in the men's restroom, Wynn.  That's embarrassing!".....He chuckled a bit as if he was enjoying the banter, but I also knew he needed my presence to feel safe.  "Okay, I'll hold the door open but I'm going to stand outside in the lobby....and I won't go anywhere until you are done."

He agreed with the plan, mostly I think, because he didn't have the time to bargain any longer.  He really had to go!
So, I waited, holding the door open to the men's room and answering with reassurance every question that came from beneath the stall door.  I also scared off at least a half a dozen men---too intimidated, I guess, to let a woman hold open the men's room door for them!

Finally, Wynn wrapped things up in the men's room, washed his hands, and joined me outside the door.  As we waited in line to pay for our purchases, I couldn't help but giggle just a bit.  Think how boring my shopping trip would have been without the adventures that Wynn always provides......

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Proving Mama Wrong

by shannonj on 11.18.08 - public

Wynn went to school with a hurt foot this morning. Somehow, over the weekend, he injured it enough to cause a slight limp. He is usually quite drama...

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Wynn went to school with a hurt foot this morning.  Somehow, over the weekend, he injured it enough to cause a slight limp.  He is usually quite dramatic and I assumed he was exaggerating the pain like he exaggerates everything else...and so I sent him to school.

Just as I was sitting down to get my first real haircut in 6 months (!), my cell phone rang and it was Wynn's school.....calling to let me know that his foot was swollen and red and tender and he was crying.  What?  How could I have sent my son to school with a broken foot, or a rabid infection or torn tendons--or whatever the problem was?  I must be a horrible mom!

School gave Wynn an Advil and I phoned the doctor's office for an immediate appointment.  It took all of my advocating experience to manage to be squeezed into a very busy schedule.  When a child has autism, I explained, they may not be able to express clearly the severity of an injury.  My poor son could be walking around experiencing more pain than most people could bare, and I needed them to respect his limitations and see us at the soonest opportunity.  We were kindly penciled in at 3:30 pm.

I met Wynn's bus at the bottom of the driveway in my car.  I didn't want him to have to walk up the curvy hill of a driveway and complicate his injury further.  I opened the back door to let him in, but he walked, instead, in front of the car and into the garage on his own.  My brave boy!

"I'm fine!", he argued, as I urged him to follow me to the car so we could have his foot attended to.

"It's not a choice." I replied as I filled my purse with snacks for bribery and manipulation.  As a last resort, I rummaged through my closet and found a video I was saving for Christmas and lured him to the car with promises of a special surprise.

Heather, one of Wynn's in-home support gals, met us in the parking lot.  I had called her for back-up, since Steve was out of  town and I wasn't sure if I could manage my ailing son all alone.  He was excited and surprised to see her out of her usual element and he eagerly lumbered along beside her through the corridor and into the elevator.

Okay, I could go into more detail, but I should probably wrap it up soon...so, basically, the doctor poked around a bit on Wynn's foot, took this mama very seriously and sent us for x-rays.  The technician took the doctor very seriously and snapped x-rays from every angle.  We raced back to the doctor's office in time to see the images just being received over his computer.  From every possible angle, Wynn's foot was perfect....no cracked bones, no infection....nothing!

"Probably just a bruise.  It should be fine in a day or two." advised the doctor.  I breathed a huge sigh--grateful that Wynn was not in serious pain (just as he had tried to tell me earlier), and rmostly relieved that I  was, this once anyway, not a bad mom!

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A Very GF/CF Halloween

by shannonj on 11.03.08 - public

My neighbors will all be receiving thank you notes this week for their crucial cooperation in our Halloween adventure. With Wynn still limited to a g...

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My neighbors will all be receiving thank you notes this week for their crucial cooperation in our Halloween adventure.  With Wynn still limited to a gf/cf diet, I had to be careful to make sure that we didn’t expose him to many infractions during the big day.  To make sure that all went well, my daughter and I went “reverse trick-or-treating” while Wynn stayed home with staff and ate dinner.  With a bag in tow of every gluten-free goodie available in town, we knocked on door after door and asked neighbors for their willing participation.  Without hesitation, every neighbor agreed to hand Wynn the “special” treats instead of the ones that all other visitors would receive that night.  Haley and I crossed our fingers that the substituted sweets would satisfy Wynn and that he would not discover our deceit.

Back home, Wynn had decided not to dress up in the pharoah costume in his closet.  “I just want candy”, he stated, and I imagined that he had realized that the long garment would only slow down his pace and delay his mission.  So, we dressed Kira-the-shih-tzu in her police-dog costume and, with video camera in hand, headed out the door.

Our first stop was next door, where we had loaded neighbor Jackie with treats to share with Wynn.  Without fear, Wynn raced up the porch steps and without knocking or ringing a bell, announced “Trick or Treat!” to the closed door.  Luckily, Jackie was waiting for us and opened the door right away.  She filled Wynn’s grocery bag with fruit leather, raisins, gum and lollipops.  “I like Halloween, Mom!” said Wynn, as he planted himself in the middle of the driveway and proceeded to consume every single morsel in his bag....and with great speed.  There was no convincing him to wait for later...he’d been waiting a whole year already!

And so it went as we walked through the neighborhood.  It was fun to meet new neighbors and re-connect with old neighbors, and with Wynn’s full attention given to his prized booty, I could actually have a brief adult conversation.....something rare around here.

Soon, however, and probably because of the massive amount of sugar in his system (natural or otherwise), Wynn stopped saying “Trick or Treat” and started calling out before we even reached the  door, “I want more candy!”......It was funny at first, but I got a little worried when he returned a gluten-free bar to the neighbor and asked if he had any M&Ms instead.  Suddenly, raisins and fruit leather were not enough, and we were quite a distance from home.  I now wished I had asked my husband to tail us with the car as I imagined a meltdown for the record books.

Haley looked at me with her huge blue eyes and asked, “What in the world are we  going to do?”

After a brief deliberation, we decided that we were not going to be able to make it through Halloween without letting Wynn cheat a little on his diet.  That’s what those enzymes at home are for, I rationalized.  Then we headed for the first house that I hadn’t given gf/cf treats to and hoped that they would not question a mom with two big kids without costume and a tortured police dog in costume and just hand over the candy.  Fortunately, they were kind and generous and both kids left with handfuls of chocolate goodness.  Haley stashed hers in her fleece jacket but Wynn, once again, plopped down on the driveway and practically inhaled the miniature morsels in one breath.  “I would be mad at you if Halloween wasn’t about candy.”, Wynn warned as he now followed in a sugar coma as we headed towards home.

My husband, Steve, met us at the door, half-expecting to hear of doom and disaster, but was relieved that all went well, and mostly as planned.  Wynn rummaged through his grocery bag to make sure that he hadn’t left anything uneaten, and then, in disappointment, threw himself on the couch and closed his eyes.  “I feel dizzy” he groaned.....with a great big grin.

Just as we were heading up the stairs to get ready for bed, the doorbell rang.  We all raced to be the first to greet our one and only trick-or-treater.  Spiderman was probably about five years old and really friendly.  He even said thank you for the granola bars that I plunked into his plastic pumpkin.  It was that moment that Wynn’s eyes caught sight of the the M&Ms that sat beside the other treats in the boy’s bin.  “He’s got M&Ms!” yelled Wynn, as he hurled his body towards Spiderman in a great effort of mindless thievery.  Steve quickly grabbed Wynn’s shoulders and I rushed little Spidey towards his parents before this Halloween could get any scarier.  “Wait, Spiderman!” Wynn called in vain, as the traumatized family dashed into the darkness.  With racing hearts, we closed the door, locked it  tight, and flipped off the porch light.  That, we decided, was enough Halloween for one night.......

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The Halloween Jitters

by shannonj on 11.01.08 - public

So, Wynn wants to trick-or-treat, or rather I should say, Wynn wants to eat lots of candy and he is willing to do whatever it takes......
Needless to...

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A Field Trip Success Story

by shannonj on 10.28.08 - public

I just wanted to share a little success story. This is a long time coming, since Wynn has been very skiddish about participating in field trips. Mos...

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I just wanted to share a little success story.  This is a long time coming, since Wynn has been very skiddish about participating in field trips.  Most of the time, he stays at school with a teacher or two while the rest of the class go to fun places like the YMCA or the beach.  But gradually, his teachers have been encouraging him to take short trips on the bus, like to the library or the grocery store to build up his confidence.
Last Thursday, they all felt like he was ready for a bigger/longer trip and made plans to include him on the Pumpkin Farm adventure.  We  were all very nervous that it would be a good day for Wynn, because a bad day for Wynn might ruin the trip for everyone.....Well, here is the note that Wynn's teacher posted on iabida.com regarding the day:

"Wynn had a great day! We spent the day at Ricker Hill Farm in Turner. He enjoyed the animals, the corn maze, the tractors and the hay bale hill. He was definitely our most enthusiastic student! We all had lunch at the picnic tables, and he enjoyed his cookies (gf/cf) for dessert with everyone else. Wynn did great with the long bus ride to and from, some questions on the way but pretty quiet on the way back. I think he's pretty tired from being outside in the crisp fall air all day."

They posted the picture of Wynn with the mules on iabida.com too.

Needless to say, we are all very proud of him and are anticipating many more adventures in the future!

Also, just in case you don't know what iabida.com is, here is a little infomercial to fill you in:

Iabida.com is a web application that is completely free.  You can create an account for your child (or your student) so that team members and family can keep in touch via the web.  Also, it is password protected and secure.  Wynn's school posts notes to us at the end of each day and we can read them even before Wynn gets home on the bus.  It really gives us a head's up of his day and helps us to answer his questions and be prepared for whatever he brings home.  Also, we send notes to his school staff via iabida.com daily as well.  There is a permanent record for all team members to refer to. We find it more helpful than the notebook that we used to pass back and forth.....Just a little reminder that you might want to check it out too:  www.iabida.com

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Important Election Survey.....

by shannonj on 10.24.08 - public

I may have the opportunity on Friday to share the views of the Foggyrock community during a newspaper interview.

In light of that, I'm curious:
...

Feeding Issues

by shannonj on 10.18.08 - public

For anyone in or around San Diego, you might want to take in this free clinic on feeding issues in children on the spectrum. If you can't make it, ch...

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For anyone in or around San Diego, you might want to take in this free clinic on feeding issues in children on the spectrum.  If you can't make it, check with the DAN! Conference website after the conference is over and they may have the seminar available to watch via the web....
Shannon

DAN! FREE Workshops Thursday Night 10/23

On Thursday Evening, 10/23, at DAN! there are 4 FREE evening workshops to choose from and I want to personally endorse the CARD Feeding Clinic from 7- 9:30. I can tell you from personal experience this works. My son, a 7 year old very selective eater (selected down to about 5-7 things) attended an eating BOOT CAMP the last week of July 2008. I have been a short order cook, trying to get this kid to eat anything over the last 3+ years that the rest of the family would eat, but he would have none of it!

Since that week, our son's diet has included 41 new foods. I am counting chicken cooked 4 different ways as four different foods because barbeque chicken and fried chicken are no where in the same sensory ballpark. I do not cook any more just for him and he sits down to eat dinner with us every night. It is a miracle in our home and if you have a selective eater, you know what I mean.

Please encourage anyone who has a problem eater, even if the child is NT, the parents get trained to help the child be an eater. I can tell you, the parent training was the most important part of the puzzle. I had the tools to get the job done when I left the center. You do not have to go to Tarzana to do it. They have people come to your home each week to help you. It takes longer of course (we did 17 eating sessions in 5 days) but stick with it and it is worth it! 
 Paulette Britton
pdbrit@mac.com

Thursday Evening Workshops 7:00 - 9:30PM 
CARD Feeding Clinic 
 Katharine Gutshall, M.A., BCBA

Pediatric feeding disorders are characterized by a child's inability to take in the food and liquid necessary to maintain growth. Feeding disorders are displayed in many forms, including total food refusal, selectivity by type (e.g. carbohydrates only), selectivity by texture, and presentation specificity. It is estimated that up to 80% of children with developmental disabilities have feeding problems; they can range from minor inconveniences (such as always having to use the same utensils) to large complications (such as full blown tantrums during meals, or bottle dependency) to medical problems (such as the need for enteral feeding via G-tube). Families with children with feeding disorders often find themselves isolated from friends and family, as they avoid trying to feed their children in the community. Through the application of behavior analytic principles, successful treatment is possible. The goal is for the child to have age- appropriate eating skills, generalize treatment gains to home, school, and community, and to train all caregivers to correctly implement the child's protocol.

Katharine Gutshall, M.A., BCBA, is Managing Supervisor of The CARD Specialized Outpatient Services in Tarzana, CA.Her interests include bringing the best research practices within ABA to the outpatient setting. Her current clientele include children with and without developmental disorders who present with challenging behaviors, including feeding disorders, aggression, and cooperation with medical procedures. Kate has presented at numerous national conferences and has been published in the field of Applied Behavior Analysis.

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Mommy's Little Truant

by shannonj on 10.15.08 - public

So, if you read the newsletter I sent yesterday, you are aware that Wynn had let me know that he was not going to attend school today. He was ticked ...

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So, if you read the newsletter I sent yesterday, you are aware that Wynn had let me know that he was not going to attend school today.  He was ticked off about the Columbus Day holiday from school and was going to express his discontent by skipping school..........The kid is 13, bigger than me and could not be persuaded otherwise.  My biggest fear was that he would have a really good time at home a decide to skip school forever!

And, as a matter of fact, the day (unfortunately) went really well for him.  He slept late, boycotted a bath and shampoo, chose to wear shorts instead of jeans, and ate his breakfast and lunch at the same meal (that is what happens when you wait until 10:30 to sit down for your first meal)......

Then, he discovered that there were some pretty cool shows on PBS that he didn't know were shown on school days.  He had always assumed that those shows only come on holidays and breaks from school and was thrilled to find out that they actually come on every single day!......Great.....

Around 1 pm, I decided that he was just having a little too much fun for a school day and invited him in the car to run errands with me.  I was determined that I wasn't going to come home until he was thoroughly miserable!

Thankfully, that only took a few errands.  He did great in the hospital while we picked up lab results, but the library was a different story.  Angry that I wouldn't allow him to borrow a DVD that I thought would be too violent, he stomped and fussed all the way back to the car.  "You're a mean mom and I'm never skipping school with you again!"

And with that, I turned the car around and headed home..........Mission accomplished, and with any luck, he'll be eagerly waiting for the bus first thing tomorrow morning!

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Survey: School Hours

by shannonj on 10.11.08 - public

Hi-
I'm taking a survey and I would love to get as much input from Foggyrockers as possible.
Please take a couple of minutes to answer the following...

Donna Williams coming to your area....

by shannonj on 10.06.08 - public

Donna Williams is an adult with autism that has been such a valuable voice for this community. She has written many books, like Nobody, Nowhere and a...

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Donna Williams is an adult with autism that has been such a valuable voice for this community.  She has written many books, like Nobody, Nowhere and also Somebody, Somewhere....but my favorite is Exposure Anxiety.  She has a very helpful website and will do consultations as well.  I met her in person when we taped a podcast with her last spring.  If you live in any of the following locations, I would really encourage you to go hear her speak.  And also, take your friends, family and school staff, as she will be able to bring a new perspective to your children from such a personal place....Pass these dates along to others in your area:

Reno, NV, USA - Thursday 13th November 2008

Topic: Autism as an Adult

Time: 6:30 pm

Venue: TBA

Cost: Free

Contact: Ralph Toddre or Kathryn Quigley

Phone: 775-322-4444

Email: rtoddre(at)krnv.com or kquigley(at)krnv.com

_____________________________

Sellersville, PA, USA - Saturday 15th November 2008

Topic: Family - School Environment

Time: 9 a.m. - 12 p.m.

Venue: Banch Creek Community Church, 100 Main St., Harleysville, PA 19438

Cost: Pre-bookings prior to 3rd October 2008 are $30.00 and $40.00 after this date.

Contact: Pamela Haines

Phone: 215-453-9070

Email: pdhaines(at)comcast.net
___________________________________
 
Dallas, TX, USA - Tuesday 18th November 2008

Topic: Autism is a Fruit Salad

Time: 7-9 p.m.

Venue: TBA

Cost: Free

Contact: Pam Lane (ASA)

Email pamalane(at)msn.com

____________________________________________

Orange County, CA, USA - Saturday 22nd November 2008

Topic: Autism Spectrum Strategies for Home, School and Community

Time: 10 a.m. - 2 p.m.

Venue: Arnold O. Beckman High School, Performing Arts Center, 3588 Bryan Ave, Irvine, CA 92602

Cost: $25 (includes lunch)

Contact: Sara Gardner

Phone: 949-854-7415

Email: ocasupport(at)gmail.com

Website: aspergers.meetup.com/375/

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The Recliner

by shannonj on 09.28.08 - public

My husband, Steve, begged me to go to the concert with my daughter tonight, but for some reason, I felt I should stay home with Wynn. He’s been a bit...

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My husband, Steve, begged me to go to the concert with my daughter tonight, but for some reason, I felt I should stay home with Wynn.  He’s been a bit of a bear for the past few days and I wondered if some extra mommy-time would take the edge off of his growly mood.

So Steve and Haley headed out in the rain while Wynn paced and ranted about all the things in his life that have gone wrong and how, inevitably, they are all my fault.

“I was mad when you ate a bite of my taco!” (that happened 6 years ago at Taco Bell); “I hated it when you made me change my pants” (that was 2 years ago when a pair of his sister’s sweats ended up in his drawers and he put them on without noticing---I normally wouldn’t have cared and would have let him wear them if it made him happy, but his poor sister would have just died if she had seen her brother’s hormonal body anywhere near her favorite pants); “You never make me anything good to eat!” (he had just recently inhaled 5 homemade blueberry muffins).....and on and on and on......

This, I thought to myself, is going to be a long evening.  Predicting a migraine, I reached for my a mug and made a nice warm chai.  Then, as I dodged Wynn’s insults and accusations, I moved towards the recliner in the family room to wait out the war.

Having lost myself in a game of tug-of-war with our shih-tzu over my sock, I was surprised when Wynn’s scrawny behind landed squarely in my lap.  He wiggled and wormed his way into a comfortable position that involved a contortion of my head and neck that cannot be scientifically confirmed.  It allowed me, however, a view of his profile and I noticed a smile that hadn’t existed anywhere else on his face all afternoon.  Sensing a numbness and tingling moving down my legs, I weighed it worth the cost for the calmness that was suddenly his.

“This is the chair that mommy used to rock you in when you were a baby”, I began.....”Back when your eyes were as big as saucers and I could always make everything okay.”   Wynn  wiggled again until he was cradled like a baby in my insufficient arms.

“Like this?” he asked.

“Yeah, like that.”......And as we rocked and swiveled together, falling over the edges with limbs too long for the ride, I knew exactly why I had stayed home tonight........

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What's in Your Kid's Backpack?

by shannonj on 09.24.08 - public

I love to see Wynn sling his blue backpack effortlessly over his shoulder each morning as he heads for the bus....Grabbing it by one strap, he hurls i...

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I love to see Wynn sling his blue backpack effortlessly over his shoulder each morning as he heads for the bus....Grabbing it by one strap, he hurls it around his back then catches it with his other arm and slides it tight against his shoulder---it is almost like a beautiful dance....a ballet, where the graceful movements tell a story that makes you want to cry.  And sometimes I do, because nothing else in his life has ever come so easily.....

Inside his backpack he carries no books, or reports and no homework or musical instrument.  Instead, his entire backpack is stuffed almost completely with his massive, industrial-sized lunch box.  At 13, he eats like a lumberjack, and I pack him more food for that one meal then most people eat in a day....Still he comes home "starving" and wants food before anything else every single day!

Also, we keep a change of clothes in the backpack--for spaghetti days, or gf/cf messy peanut butter waffle days when his hands find his shirt long before he remembers to use his napkin....

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Foggyrock Newsletter: Remembering.....

by shannonj on 09.12.08 - public

Where were you on September 11, 2001? I can bet that you remember the exact moment that you heard the horrible news. You remember who was with you...

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Where were you on September 11, 2001?  I can bet that you remember the exact moment that you heard the horrible news.  You remember who was with you and what you did as you watched the unimaginable events of the day unfold.  If you were like me, you wondered how life would change because of the violence that interrupted our peace.

You may have called a family member or friend for comfort, held hands with your next door neighbor, found solace with strangers on the subway or in a restaurant…and you may have bowed your head in prayer for the first time in years.  You probably clung tight to the hope that things would one day be normal again, and that this dark cloud would give way to light and warmth as a purpose was revealed in the aftermath of tragedy......

Funny how those emotions of 9/11 so closely mirror our emotions when we first received Wynn’s diagnosis.  How, in a moment, life changed forever with one little word: autism.

But along with the stresses, the bills, the battles and the bumps, autism has handed us some beautiful perspective.  Just as Americans gained a new appreciation of freedom on that fateful day seven years ago, Steve and I have learned to appreciate so much that we used to take for granted.  Since then, every new word from Wynn’s lips has been celebrated.  Every new effort affirmed with hugs and kisses.  Every smiley-faced note from school has been taped to the fridge….and every night that sleep has come easily a grateful sigh has risen heavenward.  Our hearts have grown bigger as we’ve witnessed the beauty in simple gifts and the journey in small steps.

My guess is that you know exactly where you were when the autism crashed into your family’s home.  Just like 9/11, you will never forget.  But I believe that, as the smokes clears and the rubble is carefully removed, you will find something precious and priceless underneath…..

In remembering, may we always be grateful.

Peace-
Shannon Johnson, Editor

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My Stroke of Insight

by shannonj on 09.09.08 - public

I'm currently reading a book called
My Stroke of Insight by Jill Bolte Taylor, PhD

She is a Harvard neuroanatomist (brain scientist) who experienc...

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Congratulations to one of our own!

by shannonj on 08.23.08 - public

One of Foggyrock's early members, Bonnie Sayers (aka: autismfamily) has just received a wonderful acknowledgement of the Brilliant Weblog Award for he...

Bon Voyage

by shannonj on 08.16.08 - public

If you have ever traveled with an autistic child, you could have probably written this article yourself....Thank you to Barbie Hines for sharing this ...

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If you have ever traveled with an autistic child, you could have probably written this article yourself....Thank you to Barbie Hines for sharing this very real experience with the honesty of the autism that we all live with.  Share the entire article with those in your life who don't "get" it...or who think you are exaggerating....

Here is an excerpt and the link to the entire post:

As soon as we entered the cabin, Jimmy panicked.

He jumped into my arms.  He started grabbing seats, trying to push us out of the cabin.  I struggled into our seats.  It took every ounce of strength I had to keep Jimmy on my lap.  Jimmy is 48 inches tall.  I am 58 inches short.  He wanted out of that cabin.  He fought with all his might.

I pulled out all the tricks.  I was singing his favorite songs in his ear.  I tried stimming on his ‘stim’ toy.  My husband ran over with the portable DVD player (my husband and daughter, Reagan, were on the other side of the plane).  I tried the back rub the chiropractor taught me.  I tried foot rubs, which always work during stressful times.  I sprayed ‘rescue remedy’ in his mouth.  I pulled out the emergency candy stash – food coloring, preservatives, the works!  His anxiety only increased.  After about thirty minutes, I could barely hold him.  A woman sitting behind me offered to switch seats with my husband, who was standing up in his seat, watching us, with a panic-stricken look on his face.  I thanked her, and my husband and daughter quickly moved behind us.

Sweat was dripping down my face.  If I released my grip on Jimmy, he would get away.  My arms were quivering (why did I quit working out?).  My poor boy had a facial expression I had never seen on him before.  He looked scared to death.  His breathing was now sounding different.  He wasn’t screaming anymore, just sort of gasping.  My daughter stuck her chubby, little 3 year old face between the seats and scolded, “Jimbo, sshhhhh!  Me playin’ Leapster!”

A flight attendant came over and said, “You will need to tell us if there is anything we can do to help.  We cannot take off like this.”  I replied, “I understand.  Can you give us some more time?”  Shortly thereafter, the pilot announced our flight would be delayed by approximately thirty minutes, and he apologized for the delay.  Great, we are now “the delay”.  Something new for us.  My nephew may have graduated in the top 2 percent of his class this year, but could he ground a plane of 350 passengers?

http://www.ageofautism.com/2008/08/this-is-autism.html

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Sean Barron on Autismpodcast.org

by shannonj on 08.04.08 - public

Michael just posted our most recent podcast with Sean Barron on his website:
www.autismpodcast.org. I thoroughly enjoyed meeting Sean and learned so...

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Michael just posted our most recent podcast with Sean Barron on his website:
www.autismpodcast.org.  I thoroughly enjoyed meeting Sean and learned so much from this very articulate man.  Sean was diagnosed with autism as a child but now considers himself to not be on the spectrum anymore.  He works as a journalist in Ohio (which is pretty amazing that a guy who had a disability that is defined by its social delays now makes a living interviewing and asking questions and being interested in the lives of others!), has regular friendships and even a girlfriend...I think you will enjoy meeting him as much as I did.

Here's the blurb from the website:

We I talk with Sean Barron, co-author of There’s a Boy in Here and The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism.

Sean co-wrote the first book with his mother and it describes, in much detail, his life as a young man with autism.  He later leaves autism behind and no longer considers himself to have autism.

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Author and Aspergian John Robison on Autismpodcast.org

by shannonj on 07.23.08 - public

Michael Boll has just posted the latest podcast--an interview with John Robison. If you have never heard of him, you might recognize the name of his ...

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Michael Boll has just posted the latest podcast--an interview with John Robison.  If you have never heard of him, you might recognize the name of his recent book, Look Me in the Eye.  He has shared his unique story of growing up on the spectrum but not being diagnosed until he was in his 40s.....and how the diagnosis helped him piece together and bring meaning to his world....So, he talks a lot about that during the podcast, but he also shares about a very exciting research project that he is involved in with Harvard.  It  involves the use of TMS (transcranial Magnetic Stimulation), which is a way of using magnetism to somehow stimulate neurons in the brain that have previously been inactive (at least that is my layman's understanding)....What is so exciting is that, even in his 50's, John is experiencing amazing results with this treatment.  He shares in the podcast about being able to look into people's eyes for the very first time in his life.  Also, about losing the anxiety that has been with him his entire life...about feeling more comfortable in social situations and how even his verbal affect and his facial expressions have expanded and normalized...Fascinating stuff!!!!
We plan to talk to him again in a few months to learn more about this research...

Tune in:
www.autismpodcast.org

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THE NATIONAL AUTISM ASSOCIATION LAUNCHES NEW SAFETY PROGRAM; PROVIDES IMMEDIATE PROJECT LIFESAVER FUNDING TO COUNTIES NATIONWIDE

by shannonj on 07.23.08 - public

The National Autism Association (NAA) has announced the launch of a new program aimed at providing families and counties nationwide with safety tool...

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The National Autism  Association (NAA) has announced the launch of a new program aimed at  providing families and counties nationwide with safety tools for children  with autism. The FOUND Program is the organization’s third direct-assistance  program, which will immediately fund $54,400.00 to provide at least eight  counties with Project Lifesaver equipment and tracking watches.
Project Lifesaver is a  nationwide tracking program established to locate and rescue missing persons, namely those with cognitive impairments and developmental  disabilities. Since 1999, 1709 missing persons have been found through  Project Lifesaver. In the past six weeks, ten missing persons with autism  have been rescued. “It’s a brilliant program with a 100% recovery rate,” says  NAA Executive Director Rita Shreffler. “Some Sheriff offices simply do not  have the funding and we hope our new program will eventually fund every  county in the nation with this lifesaving equipment.”
Shreffler noted that the  funding to launch the program came unexpectedly from a website called ‘Pixie’s Train Ride.’ The site has raised over $53,000 for NAA. Phyllis  Cahoon, creator of the site and grandparent of a child with autism stated,  “I’m thrilled that the generous contributions from visitors to my website  will help protect the lives of children like my granddaughter who are at risk  of wandering.” Cahoon is the mother of NAA President Wendy Fournier.
Since 2005, at least 14  children with autism under the age of 12 have died as a result of wandering. According to a study published in the Journal of Autism and Developmental  Disorders (Shavelle, et al, 2001), elevated death rates among those with  autism were in large part attributed to drownings. An online survey conducted  by NAA showed that 92% of children with autism are prone to wandering. Board  member Becky Grant-Widen of Maine believes all children with developmental  disabilities deserve access to this equipment. “This is such a needed program  for our community.”
Along with funding at  least eight counties, NAA has also created generic fundraising tools for communities to download and use to raise funds in their own county for  Project Lifesaver equipment. The FOUND Program will also provide advocacy in  Washington for a federal bill offering guidance and funding to states.
To download fundraising  tools or donate to The FOUND Program through NAA, visit www.nationalautism.org.  Donors have a choice to adopt an entire county for $6800, or a partial county for any given amount.
To learn more about  Project Lifesaver, visit www.projectlifesaver.org.  Pixie’s Train Ride can be found at www.pixiesplace.com/trainride.  Parents and caregivers can also find safety tips on NAA’s site at http://www.nationalautismassociation.org/safetytoolkit.php.

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Dear Michael Savage--Newsletter

by shannonj on 07.21.08 - public

In my last newsletter, if you remember, I shared a letter that I had recently sent to my local library thanking them for being so kind and patient wit...

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In my last newsletter, if you remember, I shared a letter that I had recently sent to my local library thanking them for being so kind and patient with my son with autism.
You’ll be interested to learn that I received a nice note in return from the director of the library thanking me for taking the time to honor and recognize her “wonderful, caring group of consummate professionals”.  I’ve tucked the note away to show my son sometime in the future that his disability and needs have allowed others around him to be their best.

Today, I share a very different kind of letter with you.  Many of you most likely heard how the controversial talk show host, Michael Savage, recently referred to the autism population as brats.  To quote him exactly:

"I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot."

Ummmm, excuse me, but like any mom, I don’t like my child being called a “brat”.  Especially when the comment is so undeserved, disrespectful, and potentially harmful to the very awareness and acceptance that this community has worked