Welcome to FoggyRock

Arthur TV Series Introduces New Character in April: Carl...he has Aspergers

by shannonj on 03.16.10 - public

Beginning April 5th, the Arthur series will introduce Carl, a new character who happens to have Aspergers. Click here to have Brain, of of the origin...

Behind the Photo

by shannonj on 03.14.10 - public

Ever wonder about the story behind the photo?

Check out this sweet photo of my birthday boy turning 15......

Now take a look at the video, which...

Speaking of Seizures

by shannonj on 03.09.10 - public

This is from a list of speakers at the upcoming AutismOne conference:

Alexander Rotenberg, MD, PhD, Children's Hospital, Harvard Medical School, pr...

Title :

Description :

This is from a list of speakers at the upcoming AutismOne conference:

Alexander Rotenberg, MD, PhD, Children's Hospital, Harvard Medical School, presents:
Prospects for Transcranial Magnetic Stimulation in Autism

Transcranial magnetic stimulation (TMS) is a safe and painless method for noninvasive brain stimulation. In TMS, small electrical currents are generated in the brain by a strong magnetic field that is produced by a powerful electromagnet that is positioned next to a subject's scalp over the area that the investigator desires to stimulate. In recent years, TMS has emerged as a promising tool to either measure or alter cortical excitability. In autism, where the high prevalence of epilepsy suggests that abnormal cortical excitability may contribute to the overall clinical picture, TMS may be of use in two capacities: First, as a diagnostic tool to detect abnormal cortical excitability or abnormal cortical plasticity and 
aid in characterizing disease severity or response to treatment; second, as a therapeutic tool to restore normal cortical excitability and improve neurologic symptoms such as epilepsy in patients with autism.

You can also read about TMS on John Robison's website, as he has received the treatment as part of the Harvard experiment and can describe the difference it has made for him:

http://jerobison.blogspot.com/p/use-of-tms-transcranial-magnetic.html

Type :

Public Private

Photo :

Tags :

(comma separated)

A Denim Farewell

by shannonj on 03.08.10 - public

It is in the garage at this point. That comforter that was just that, a comfort. I bought it for Wynn's "big boy" room when we first moved to Maine ...

Title :

Description :

It is in the garage at this point.  That comforter that was just that, a comfort.  I bought it for Wynn's "big boy" room when we first moved to Maine from Chicago.  He had just turned three and had never questioned his crib, sides and all.  It was what he knew of a bed, and since he had never been a climber, he didn't challenge the rails, the boundaries.  Maybe other three year olds demand change, push for independence.  Wynn didn't and that is how it wasn't until we moved that we considered letting him sleep in a "real" bed.  We figured that the transition would work nicely.  New house, new bed.  And it did.  He didn't ask for his old crib back and never rolled off the edges of the new mattress/box springs to the hard wood floor.  He stayed put in the middle of the antique spindle bed, under the denim comforter that was both heavy and assuring at the same time.  For a child who craved deep pressure, hard hugs, it must have felt quite safe under there. I imagine that it ushered in deep sleep and long dreams, Wynn's favorite kind.  "Was that real that I was driving a car?" he once asked upon waking.  "Stay with me until I dream" he has requested many times at bedtime.  "How can I dream the long kind of dreams?" he recently asked.  I never know how to answer such questions but am amazed that he still thinks I know everything.  My mother tells a story of a young and trusting me asking our favorite beautician, Gloria, to "cut my hair long."  Long hair, long dreams....somewhere there is a relationship, I'm sure.

So the next time I go to the dump, I will take that comforter with me.  It has been washed so many times that the seams have split and its runaway fluff fills the lint bin and and sticks to sweaters and cotton shirts.  I trimmed the sides and sewed up the edges a few years ago, making it less of a full-size comforter and more of a lap blanket.  At that point, it needed to be paired up with another blanket in order to cover Wynn's long legs and arms, but he still pulled it close to his chin and even over his head on cold nights, keeping it so near that it almost deserved a name.

I found the denim mass at the bottom of the stairs a few days ago.  When I asked Wynn to take it upstairs to his room he complained that it was wet and needed to be cleaned.  It didn't smell bad or even feel wet, but I tossed it into the laundry room just the same.  Then, a few days later, in a brave moment, I carried the comforter to the garage and plunked it next to the row of black trash bags destined for other adventures.  It struck me as wrong to leave it there, so long had been its visit in our home.  It had been nothing but a friend to Wynn, and to this mother who only rested and calmed when her son was resting and calm.  But one more trip through the spin cycle would be the end of it and if it was going to go, then I was going to leave it as intact as possible.  We all deserve to leave, when we leave, with dignity, and in one piece, even if only by a thread.

Goodbye denim friend.  You grew smaller while Wynn grew bigger.  You once enveloped him, back when his small frame just made a bump under your yardage.  Now, on your best day, you can no longer cover his limbs and keep him warm, but for 12 years, you did nothing else, and you did it well.  I'm grateful for the nights when you held him so tight.  You will never be replaced and certainly not forgotten.

Type :

Public Private

Photo :

Tags :

(comma separated)

Twin Boys with Autism Need a Home

by shannonj on 03.05.10 - public

This was posted on the Thoughtful House listserv. It was requested that it be posted around the community as it is such a critical request:

A soci...

Title :

Description :

This was posted on the Thoughtful House listserv.  It was requested that it be posted around the community as it is such a critical request:

A social worker in Connecticut has contacted us requesting assistance with placing twin brothers with autism in a new home. The boys are 7 year old twins with autism. They are Caucasian, with brown hair and slender builds. They are in the first grade and receive special ed services. One is non verbal with some sign language and the other has verbal communication. They do well with a routine and are in music therapy and will soon start swimming classes. The boys identify well with each other and the social worker is trying hard to place them in the same home. They may consider separating them if they can be placed close enough that they can have ongoing visitation with each other.
If you live in Connecticut or know someone that does, please share this with anyone in that state who may be interested in giving these young boys a good home (interested families must reside in CT). You may contact Lisa Cassista at (860) 456-6635 or her supervisor at (860) 456-6629. And once again, kudos to these social workers for their hard work on behalf of these boys.
Thank you,

Anissa J. Ryland, Director of Operations
Thoughtful House Center for Children

Type :

Public Private

Photo :

Tags :

(comma separated)

It's All in the Number

by shannonj on 02.12.10 - public

Wynn's school celebrated Valentine's Day yesterday,Thursday--the 11th. I had sent in special treats and I figured that Wynn would come home after scho...

Title :

Description :

Wynn's school celebrated Valentine's Day yesterday,Thursday--the 11th. I had sent in special treats and I figured that Wynn would come home after school thinking that, because there had been a party, that it was, indeed, Valentine's Day that day.

When he walked in the door from school, he handed me a bag with a paper heart on the front. Inside were some toys and cards for the occasion. "Today was Valentine's Day" he said. I didn't disagree. I didn't think he would understand celebrating a holiday early, so I just went with it.

"Yes, it is!" I said. "How was the party?" I asked

"What do you have for me?" he asked, ignoring my question, and cutting to the chase.

My mom, his Nana, had sent him some money to spend for Valentine's Day. Just that day I had noticed that Movie Gallery was going out of business and I had used the money to buy a slew of family videos for $2.99 a piece. I had hoped to give him a few for Valentine's Day and a few for his birthday on the 15th....."Oh" I replied, "Nana sent you some movies!"

"How many?" he wanted to know.

Now that was a tricky question. Wynn has a thing about numbers. He will often care more about the number or quantity of a gift than the actual gift. Most of the time, his favorite number is 3, and so I try to give him things (even his evening snack of fruit) in quantities of three. If three was the lucky number today, that would work for me and I could save the other movies for his birthday--but I wanted to make sure so I didn't ruin this moment.

"Well, what is your favorite number?" I asked, waiting to hear him say three, or maybe four, and hoping to ward off any tantrum with my carefully worded question.

"Alot?" he said, with the question in his voice....

This kid is so smart, I thought, and I laughed at this game of semantics he and I were playing with each other.

"What do you think about three?" I queried.

"Good" he said.

"Good." I said........ and I tucked the rest away for another day.

Type :

Public Private

Photo :

Tags :

(comma separated)

Supplement Recall

by shannonj on 02.08.10 - public

Dear Kirkman Customer and Distributor,

It has come to Kirkman's attention, that a raw material vendor has supplied Kirkman with stevia that ha...

Title :

Description :

Dear Kirkman Customer and Distributor,

It has come to Kirkman's attention, that a raw material vendor has supplied Kirkman with stevia that has a higher content of antimony than may be acceptable for our special needs customers.

The problem is limited to only two lots of stevia, which were used in several Kirkman® products.  These products affected by the high antimony levels are:

1.    Zinc Liquid - - Product # 387/8 and 387/16    
2.    Super Nu-Thera w/o A and D - - Product # 447/454
3.    DMAE 50 mg. Chewable - - Product # 489/90
4.    Super Nu-Thera Powder Orange - - Product # 410/454
5.    B Complex Powder Pro Support - - Product #399/7    
6.    TMG w/Folinic and B-12 Powder - - Product #413/4 and 413/8
7.    Chewable Vitamin C Tablets - - Product #389/100 and 389/250
8.    Trial sizes of the above seven products

You should stop using these products, destroy them and request a credit or replacement from Kirkman®.  Please call our customer service department to make this request.

Raw material suppliers or nutraceutical companies are not required to test for antimony levels, so Kirkman® was not aware of this problem until two of our physician customers brought the issue to our attention as a result of their metal testing.   We immediately had our laboratory research the issue.  They quickly isolated the problem to two specific lots of stevia leaf extract. Kirkman® immediately stopped using the affected stevia and stopped shipping products that tested out at high antimony levels.

So that this situation does not reoccur, we have implemented a new policy that every raw material we use in our products will be tested for antimony.

Kirkman® apologizes for any inconvenience we may have caused because of this issue.  We have instituted this voluntary action regarding the suspect products because we feel it's the right thing to do.  Kirkman® will not compromise on the quality standards we have been known for throughout our more than 60 years of business.

Sincerely,
Larry Newman
COO Technical and Regulatory Affairs
Kirkman Group
 
http://www.kirkmanlabs.com/

Type :

Public Private

Photo :

Tags :

(comma separated)

Am I Crazy?

by shannonj on 01.28.10 - public

I just sent an email to the director of my son's school program. We email back and forth a lot and she is a great listener. Recently, after I receive...

Title :

Description :

I just sent an email to the director of my son's school program. We email back and forth a lot and she is a great listener.  Recently, after I received a form from the school district asking for a check for this year's high school yearbook, I emailed her and asked if there was any way we could put together a yearbook for Wynn, and the three other boys in his program--something that would actually have pictures of them in it, doing meaningful things, going to meaningful places.....something that my son could use to help him process each school year and document that he was truly in it.  She said yes.  Right away, she said yes.  And last week she emailed me a photo of Wynn bowling in black and white bowling shoes.  I hope that one makes it in the yearbook.  Somehow I think it will.

Yesterday, Wynn and I and one of his teachers took a road trip to see his doctor.  On one stretch of highway, Wynn caught sight of a dead raccoon.  He doesn't notice when his zipper is down, or that he has spaghetti sauce on his face or that his toenails are 3 inches long, but he never misses a dead animal on the side of the road.  The rest of the drive back to school, Wynn wondered aloud about that raccoon.  How did he get there?  Was he dead or alive?  Do dead animals make good pets?  and on and on.

He continued his perseveration on that darn raccoon after school as well.  It evolved from wanting to call the police to rescue the raccoon (even though I explained that a dead raccoon is beyond rescue) to a detailed plan to steal a police hat, borrow my car, pick up a friend, rescue the animal himself and then bury in the ocean for a whale or shark or such at eat for dinner.

And somewhere in the middle of this breathless conversation between himself and his delusions, he said something that broke my heart.  "I'm never going to drive a car, am I?"  he asked.  He'll be 15 next month and he can't read.  But still, he'll be 15 next month, and the other part of him that has a deepening voice and light-colored whiskers above his upper lip, wants to do what every teenage boy wants to do and it has nothing to do with his report card and everything to do with motors and speed and skidmarks.

Every boy deserves a chance to sit behind a wheel of something bigger and stronger than himself, and so I sent an email to his teacher.  It mentioned, among other suggestions, the idea that Wynn might be interested in driver's ed---an adaptive version, to be sure, but something that would (please) help keep my son's dream alive.

Am I crazy?

Type :

Public Private

Photo :

Tags :

(comma separated)

HBO and Barnes & Noble Invite You to Meet Temple Grandin Monday in New York City

by shannonj on 01.24.10 - public

If you live in or near NYC...go meet Temple Grandin and learn more about the movie of her life.....Or tell your friends in NYC to stop in and help bri...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Disney....Your Experiences

by shannonj on 01.21.10 - public

Hi Foggyrockers-
I'm going to redirect you to the forum to help a member plan their upcoming trip to Disney with their ASD child.... I remember readi...

Puberty

by shannonj on 01.14.10 - public

Hi friends-
I'm trying something a little new today...something that even those of you who only have 5 seconds to spare can participate in.

The ...

Autism Study....I'm passing this along

by shannonj on 01.14.10 - public

I have just finished my first round of tests with NIH for a huge and
IMPORTANT study that NIH is undertaking looking at why some kids with autism are...

Title :

Description :

I have just finished my first round of tests with NIH for a huge and
IMPORTANT study that NIH is undertaking looking at why some kids with autism are recovering while others are not.  They are in desperate need of more
kids who have recovered to apply.  I am thankful that my son Daniel has fit
the criteria but they are having trouble find others.

PLEASE, if you have a recovered kid, know of someone who has a recovered
kid, please share this information with them.

Please email me directly and I have some additional information to send you.
You will get compensated for your time, and receive over $20,000 in free
diagnostic testing.  This has been a wonderful experience and this is a
GREAT opportunity to let the medical community know that biological
treatments can work!!

PLEASE forward this onto other lists for me and any other places that will
be appropriate.

Thank you so much for your help.

Lori

Lori Knowles
General Manager and Director
New Beginnings Nutritionals
7797 Quivira Rd Lenexa, KS 66215
Phone: (913) 754-0458
Fax: (913) 248-7609
Email: lknowles@nbnus.com

Type :

Public Private

Photo :

Tags :

(comma separated)

Temple Grandin Movie

by shannonj on 01.05.10 - public

I don't think I want to miss this one....even though I don't get HBO!

Claire Danes Stars in Temple Grandin Story:

Autism and raising cattle may...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Over.....

by shannonj on 01.04.10 - public

Wynn melted tonight. Just completely fell apart. Another break has ended and his last day of the school holiday was coming to a close. So he had a ...

Title :

Description :

Wynn melted tonight.  Just completely fell apart.  Another break has ended and his last day of the school holiday was coming to a close.  So he had a meltdown and blamed it on me, on Steve, on the dog, on the snow, on the fact that he was hungry, and that he had to be on a special diet, and that he never, in his own words, "got nothing".  It took the best of two hours for him to come around, to chat with his sister, to laugh a little bit with the electrician in the laundry room, and then, to finally sing himself to sleep.

That is what transitions, change, something different, something new, looks like around here.  Even though school is wonderful and he thrives with the routine and the structure, something was ending and something else was about to begin, and in between the two of those places there is a shaky bridge that causes Wynn enough confusion or grief or angst that the whole house has to pay for it.

I know that Wynn will do fine tomorrow. He'll shower in the morning and board the bus after his familiar and comical stride down the driveway.  He'll come home with a good report from his teachers and want his snack right away. And this house will be safe again at last.....until, yes it's coming: Martin Luther King's birthday and another school holiday around the bend!

Type :

Public Private

Photo :

Tags :

(comma separated)

OCD, Cured...The Story

by shannonj on 12.09.09 - public

Today Michael Boll and I interviewed Beth Maloney about her book, Saving Sammy: Curing the Boy Who Caught OCD
( www.savingsammy.net )

Look for the...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Your Stories.....

by shannonj on 12.04.09 - public

Remember when I asked you to share your stories for a book project to raise money for camp for children with autism?
Here is the letter that I just r...

Title :

Description :

Remember when I asked you to share your stories for a book project to raise money for camp for children with autism?
Here is the letter that I just received from the gals who put this all together:

Raising or working with a child with autism can be one of the most difficult things we will ever do. But at the same time, it can bring with it some of the funniest, most uplifting, and inspirational moments of our lives.

Thanks for your submissions! We have over 130 pages of YOUR stories! Copies expected any day, and will be available at the Jingle Jog for Autism, these will make great gifts for teachers, family members, and you!

Books will be sold for $10 each, not including shipping if you live out of the area. All proceeds from the sale of this book will benefit the 4th FACES camp for Autism in 2010.

Please let us know if you want to be on the list to receive a copy, only 100 have been pre-ordered in the initial printing.

Polly Bouker, mother to Jon, 10 year old with autism
L-P@windstream.net

Teresa Johnson, mother to Rusty, 17 year old with autism and Founder of F.A.C.E.S.
Tjohnson50@aol.com

http://www.georgiafaces.info/

Type :

Public Private

Photo :

Tags :

(comma separated)

Have a Need? Write a Grant....

by shannonj on 12.03.09 - public

I just came across this link today for companies that offer grants for products and services that might benefit our children. Many of the grants must...

Title :

Description :

I just came across this link today for companies that offer grants for products and services that might benefit our children.  Many of the grants must be submitted by an organization----so take the grant to your local Autism Society, your case management agency etc.... and ask for their assistance.  Good luck!
Shannon

The latest grant information to help you secure funding for your important projects

Nutrition Program Funding 
 Innovating Worthy Projects Foundation
 General Mills Supports Healthy Kids
 Ronald McDonald House Charities
 Economic Stimulus Recovery Act
 Build-A-Bear Foundation
 Lego Children's Fund
 United Healthcare Children's Foundation Grants
 GTECH Computer Labs for After-School Programs
 Coca Cola Foundation Target Education
 RGK Foundation focuses on Education, Community, and Medicine/Health
 Hilton Hotels Support Schools, Youth & Healthcare 
 Lowe's Charitable & Educational Foundation Supports Public School Projects

Successful Grant Writing Made Simple! FREE Assistance!

Our Grant Writer has the answers...
Now, we invite you to take advantage of this expertise! From locating funding opportunities to uncovering funding secrets, our Grant Writer is available to help you write successful proposals! This service is FREE!

Do you know the seven narrative components for a successful funding proposal? Take a moment to answer these questions:

Does your agency need grant money?
Are you looking for sources of grant funds?
Would you like to find funding opportunities posted on the internet?
Do you want to submit grant applications to government, corporate or foundation sources?
Have your grant applications ever been rejected?
Do you find the grant process confusing?
Is there a right way to write a grant?
Are there secrets to getting grants?
Can you learn to write successful grant proposals?
Do you need information and help with grants and grant writing?
How does this work?

http://www.flaghouse.com/grantWriting.asp

Type :

Public Private

Photo :

Tags :

(comma separated)

A Call for Artists

by shannonj on 12.01.09 - public

Last year we inaugurated the Autism Society Online Art Exhibit to celebrate the creativity and diversity of the autism community — and it was a smashi...

Title :

Description :

Last year we inaugurated the Autism Society Online Art Exhibit to celebrate the creativity and diversity of the autism community — and it was a smashing success! We hope even more of you will participate this year, and encourage you to: 
View the exhibit
Upload new art and artist stories
Read artists' stories denoted by the blue book icon
Forward this email to others
The Autism Society Online Art Exhibit is just one of the ways we’re working to help make autism top of mind and to bring about more vital treatment-guided autism research and enhanced support strategies.

We look forward to receiving your art submission and to having you visit our online exhibit that celebrates how people with autism are special in so many ways.

Thank you again for being a friend and helping us to advance our vital mission to improve the quality of life for every American affected by autism, and their families.

Have a happy Thanksgiving!

Sincerely,

Lee Grossman
President and CEO
Autism Society member since 1991
Parent of a son with autism

http://www.autism-society.org/site/MessageViewer?em_id=20906.0&printer_friendly=1

Type :

Public Private

Photo :

Tags :

(comma separated)

Fill in the Blank

by shannonj on 11.26.09 - public

While Wynn ate his apple pie (three pieces) and drank his coconut milk shake after dinner today, I asked him to fill in the blank:

Mom: "I'm thankf...

Thanksgiving at Our House

by shannonj on 11.24.09 - public

Well, after much thought, I've decided that I'm only making pie for Thanksgiving. That is all that Wynn cares about and will be all that he thinks ab...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Movie Night

by shannonj on 11.18.09 - public

AMC Entertainment (AMC) and the Autism Society have teamed up to bring families affected by autism and other disabilities a special opportunity to enj...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Keeping Well in Winter

by shannonj on 10.25.09 - public

I just read that gargling with salt water twice a day and also rinsing out the nasal passages twice a day with a saline wash can prevent viruses from ...

Of Moon and Stars

by shannonj on 10.20.09 - public

Wynn worries so much. He paces, he rants, he questions, he accuses...... A boy at war with reality. Afraid and unwilling to be comforted. Bubbling,...

Gone Gluten-Free?

by shannonj on 10.12.09 - public

Hi Foggyrock Friends-
I'm working on a grant for a gluten-free project and looking for folks who buy/use/prepare or serve GF foods in their home. If ...

The 7-Year-Old Schizophrenic on Oprah today

by shannonj on 10.06.09 - public

I thought this might be interesting to watch, as so many of our children are struggling with not just autism, but other diagnosis that fall under the ...

A Mom Shares Her Story of Curing Her Son's OCD

by shannonj on 09.24.09 - public

From the book, Saving Sammy: Curing the Boy Who Caught OCD
http://www.savingsammy.net/

When my middle son was twelve, he was diagnosed with Obsess...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Good Dental Wishes

by shannonj on 09.22.09 - public

Wish me luck as I take Wynn to see the dentist for the first time in over 2 years! He used to go regularly, but after his hospital stay, he just wasn...

Your Input Needed for Seizure Study

by shannonj on 09.11.09 - public

Autism Seizure-Treatment Survey Continues: Parents Urged to Provide Data
Survey aims to assess treatment efficacy and possible side effects

As we...

Title :

Description :

Autism Seizure-Treatment Survey Continues: Parents Urged to Provide Data
Survey aims to assess treatment efficacy and possible side effects

As we announced in last month's enewsetter, Dr. Richard Frye is working with recent ARI/Defeat Autism Now! Think Tank attendees on a Consensus Paper on Seizures in Autism and How to Treat Them. Parents are invited to submit their data online through a brief online survey; we are pleased that the response so far has been excellent. If your son/daughter (or you) suffers from seizures and you haven't had a chance to complete the form, we hope you'll take a moment to provide this crucial data.

About the Survey
We ask you to fill out a survey form created by Dr. Richard Frye with the help of Prof. James Adams, Science Coordinator of ARI/Defeat Autism Now.  We think that this very detailed form will provide a much richer understanding of the efficacy and possible side effects of current treatments for seizures.  
 
Please help us by filling out the survey form if it applies to you, and also by forwarding information about this survey to other autism groups.

The purpose is to better understand seizures in individuals with autism spectrum disorders. The survey should take 5-20 minutes to complete, depending on the number of seizure treatments you have tried.

The form asks questions regarding types of seizures you have observed, whether seizures have seasonal variations or vary when allergies flare, and specific questions regarding medications you have used and their efficacy.

If you have more than one child with seizures, please fill out a form for each.
 
Complete the Seizure Treatment Survey Online :
http://www.autism.com/ari/enewsletter/enewsletter_200907.html#LETTER.BLOCK21
 
Thank you very much for helping us look for answers.
 
Sincerely,
 
Richard E. Frye, M.D., Ph.D., F.A.A.P.
Assistant Professor of Pediatrics and Neurology
University of Texas-Houston
 
James B. Adams, Ph.D.
Professor, Arizona State University
http://autism.asu.edu 
Science Coordinator, Autism Research Institute/Defeat Autism Now!

Type :

Public Private

Photo :

Tags :

(comma separated)

Dogs Who Quilt

by shannonj on 09.07.09 - public

Wynn is full of questions. He is much more comfortable asking them then answering them. Most of the time, his questions come from a repertoire of ab...

Title :

Description :

Wynn is full of questions.  He is much more comfortable asking them then answering them.  Most of the time, his questions come from a repertoire of about 5 topics, and he already knows the answer that he wants you to give. For example, he might be thinking about owls one day.  The questions, then, would be owl-centered and would go something like this, “Did we used to have owls in our woods?” (The answer should be “no”, because he doesn’t remember having owls in our woods when he was younger, and even if we did have owls in our woods in the past, the fact that he doesn’t remember them means that, to him, they have never lived in our woods before.  Don’t waste your time trying to explain it.  Just say “no”.)

The next question might be, “Do owls live in zoos?” (the answer is “yes” because the animal park in Gray, Maine had an owl there when we visited about 5 years ago.  It doesn’t matter that there may be other zoos that don’t have owls.  The answer, to Wynn, from his perspective, is always “yes”).

From there, he might ask, “Can I have an owl as a pet?” (The answer is “no”.  Even though some people have had owls as pets.  Even though one of my favorite books, My Side of the Mountain, is about a boy who lives in a hollow tree and has wild animals as pets.  Even though owls can be trained and possibly tamed, the answer is still “no”.  I know this because once, I told Wynn that it might be possible to have an owl as a pet one day.  What he actually heard was the word, “yes” and wanted to know when could we get a net and catch the owl that lives in our backyard?  He wanted me to promise that the owl would stay inside and sleep with him at night.  He wanted me to find snakes in the woods to feed the owl.  He wanted to poke the owl’s eyes to see what the owl would do….and he wanted all of these things for about 3 days straight without talking about anything else.  So, always, the answer is “no”)

Yesterday, Wynn had a brand new question–one that I had never heard him ask before.  For the record, though, it did fall under the category of animals, which is one of his top five topics of questions to ask.

“Mom” he asked, “Which animals are Amish?”
Cute, huh?

The answer, by the way, is “none”.

Just trust me on this one.

Type :

Public Private

Photo :

Tags :

(comma separated)

Fortunately, Unfortunately

by shannonj on 09.03.09 - public

There is a children's book called Fortunately, Unfortunately that has been around for a while and is a fun read....Here is my family's version:

For...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Music to My Ears

by shannonj on 08.15.09 - public

Both of my children have beautiful voices. Haley, since she was just a baby, has awoken every morning with a song. I knew she was awake not because ...

Title :

Description :

Both of my children have beautiful voices.  Haley, since she was just a baby, has awoken every morning with a song.  I knew she was awake not because of a cry, but because of a sweet tune coming from her room.  She's 12 now and her door is often closed, so I don't hear her sing much anymore, but the music is still in her, I'm sure.  Just the other day, she played a rendition of Amazing Grace for me from the Garage Band application on my new Mac.  She figured out how to sing 5 different parts and recorded them together in one song.  If I could download audio here, I would share it.  It would make you cry, I swear....

Tonight, it is just Wynn and I.  Steve and Haley are camping in Wisconsin and won't be home until late on Sunday.  Things are smoother when Wynn gets all of my attention.  When he isn't competing for me with his dad and his sister, he actually relaxes quite a bit and can be really sweet.  I let him stay up a little later tonight and we looked at magazines at the kitchen table and discussed why a dog might  be wearing a wig on the cover of Reader's Digest.

Wynn's in bed now and I've got the windows open and the evening air is silent and cool.  I hear music coming from Wynn's room--his voice cracking with the high notes, but sweet and perfect just the same.

Type :

Public Private

Photo :

Tags :

(comma separated)

Generation Rescue's Rescue Family Grant Program

by shannonj on 07.09.09 - public

Generation Rescue's Rescue Family Grant Program

We are still accepting our first round of 250 applications for our Rescue Family program; applic...

Title :

Description :

Generation Rescue's Rescue Family Grant Program

We are still accepting our first round of 250 applications for our Rescue Family program; applications must be postmarked by July 15, 2009.  Applicants who meet the grant program criteria and complete the grant application will be considered for a Rescue Family grant. Rescue Family grants are based on economic need within the applicant's specific geographic area.

Generation Rescue's Rescue Family grants are designed to provide support to individuals and families affected by Autism Spectrum Disorders. Each grant recipient will receive two doctor visits with a specially trained physician who treats individualized medical conditions associated with autism.  Grants also include a 90-day supply of vitamins, minerals and supplements, a Generation Rescue Rescue Mentor and information on dietary interventions. We are currently in the process of negotiating some laboratory testing as well and hope to have some additional announcements in the next few weeks.

Applicants must complete and postmark the grant application by July 15th in order to be considered for the Rescue Family program.

The application and complete application guidelines are on our website at www.generationrescue.org.

Type :

Public Private

Photo :

Tags :

(comma separated)

Be Free

by shannonj on 07.03.09 - public

“You said it was hard to catch wildlife, but it wasn’t! Come see!” Wynn called. “See my sparrow, my new baby sparrow!” Apparently, Wynn had discov...

Title :

Description :

“You said it was hard to catch wildlife, but it wasn’t!  Come see!”  Wynn called.  “See my sparrow, my new baby sparrow!”  Apparently, Wynn had discovered a sparrow’s nest in a bush and was cradling (I use that term loosely) a baby bird in his hands.  “Can we keep it as a pet?” he asked.  “Can it sleep in my bed?” he wondered.

My son loves animals.  He has started a new tradition of sitting on the deck at twilight and listening to the birds prepare for the evening.  For some reason, they are busy and boisterous this time of the day, and to Wynn as he takes it all in from his seat in the middle of it all, it must be something like an IMAX theatre presentation.

Unfortunately, this little ritual serves to revive Wynn and his energy, just as bedtime draws near.  Last night, even in bed he couldn’t stop thinking of the birds and their dances.  Anxious to miss nothing, he pushed out the screen from his second story window and I found him attempting to climb out on the roof “to see more better”.

“I set baby sparrows free.” Wynn said as I sat next to him on his bed.

“Yes”, I said. “I saw the sparrow and he flew right out of your hand.”

“No Mom.” Wynn corrected.  “I set all of the birds free.  I set the whole nest free.”

I can only imagine what joy that must have brought my son….to hold out his hand and say, “Be free” while tiny winged creatures set off on their maiden flight.  What a gift to be able to let go, I thought.  What a gift indeed.

Type :

Public Private

Photo :

Tags :

(comma separated)

On a Bad Day....Think Advil

by shannonj on 06.29.09 - public

"On a bad day," Wynn's DAN! doc told me, "think Advil." I didn't remember her words until the end of this very bad day. Wynn has actually been a gr...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Chex-- The Update

by shannonj on 06.24.09 - public

I thought I should share this message that I received from General Mills concerning their "Gluten-Free" labeling on their Chex cereals, since I had ju...

Title :

Description :

I thought I should share this message that I received from General Mills concerning their "Gluten-Free" labeling on their Chex cereals, since I had just recently promoted their product in the news letter.  For Wynn, I think the Chex are fine because he has been off gluten for 11 years and also takes enzymes, but for others who may be more sensitive, you might find their response helpful:

Dear Mrs. Johnson:
 
Thank you for contacting us about gluten in Chex cereal.
 
General Mills offers several cereals that are labeled gluten-free.  Please check the package label for the gluten-free statement on the front/side/back of the package.
 
Because we constantly strive to improve our products′ quality and nutritional value, the most up-to-date product information is on the product package.  For that reason, we do not distribute product information lists as they could quickly become outdated.
 
For cereals not labeled gluten free, we will always declare gluten containing ingredients if they are in the cereal.  If the ingredient declaration lists wheat, oats, barley, rye, or derivatives of these grains, then the cereal contains gluten.  Examples of derivative ingredients include: malt, barley malt, organic malt, semolina, Durham, triticale, spelt.  We do not hide gluten in any ingredients in any of our cereals. If there are gluten ingredients in our cereals, those ingredients are always clearly listed. 
 
If there are no gluten- containing ingredients listed in the cereal ingredient label, we still cannot assure that this cereal is gluten free.   While we have not added gluten-containing ingredients, factors such as sourcing, conditions of manufacture, etc. do not allow us to provide the full level of assurance that a gluten free claim requires.
 
Additional information regarding gluten may be obtained by contacting your health care professional or:
  
Celiac Sprue Association/United States of America, Inc.
PO Box 31700
Omaha, NE  68131-0700
402-558-0600
Or toll free:  877-CSA-4-CSA  (877-272-4272)
www.csaceliacs.org 
We hope this information is helpful.
 
Sincerely,
  
Jeremy Gold
Consumer Services

Type :

Public Private

Photo :

Tags :

(comma separated)

Secret Ingredients

by shannonj on 06.16.09 - public

I thought they were delicious. The texture was dense and the flavor was rich and pure. Must have been the secret ingredient: pureed black beans….2 wh...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

It Happens Every Day: Foggyrock Newsletter

by shannonj on 05.21.09 - public

I know that Mother’s Day is over and gone for another entire year, but honestly, without sounding cute, isn’t every day Mother’s Day? It’s not like t...

Title :

Description :

I know that Mother’s Day is over and gone for another entire year, but honestly, without sounding cute, isn’t every day Mother’s Day?  It’s not like the 4th of July, when once a year we dress in red, white and blue, remember to hang the flag on the porch and show up for the neighborhood parade.  Or Thanksgiving, when we plan for weeks, cook for days and then spend the better part of the actual holiday napping……Mother’s Day is different in that it is actually a day to celebrate an event that occurs every day, all day long and sometimes even in the middle of the night. Where other holidays help us remember events that happened possibly hundreds of years ago, Mother’s Day is honored in the midst of every mother’s day, as you don’t stop being a mother, once you are a mother, and there is little chance that any mother needs to be reminded that she is a mother, or what is like to be a mother.

The word “mother” is fascinating too, because it is a noun and also a verb.  When you have children, you are a mother.  Because you have children, you mother them.  As mothers, we are, and we do, and it happens twenty-four hours a day, all year long.

So, we stand and salute on Memorial Day. We barbeque and eat a replica of the American flag made of, among other things, blue jello, on the 4th of July. We keep our children home from school to eat crunchy cereal in front of the television in remembrance of George Washington and Abraham Lincoln on President’s Day. And once a year, and always on a Sunday (so the kids are guaranteed to be home from school, and will certainly need to be fed three times and be entertained, refereed, reprimanded and re-directed), we wake up mothers early in the morning all over America to remind them that they won’t be sleeping late anytime soon……(and I wouldn't have it any other way).

Happy Mother’s Day today, and every day!  (And that goes for you dads too…)

Shannon Johnson, Editor

PS: Here is a link to the best piece I have ever read on this particular day of observance
http://www.npr.org/templates/story/story.php?storyId=103974220

Type :

Public Private

Photo :

Tags :

(comma separated)

Disconnected Kids Podcast

by shannonj on 05.17.09 - public

From Autismpodcast host, Michael Boll:
Shannon Johnson and I talk with Chiropractic Neurologists Drs. Robert Melillo and Peter Scire. Dr. Melillo is...

Does any one have some advice on how to handle the sibling of a Special Needs kid?

by shannonj on 05.14.09 - public

Hi Foggyrockers...I'm passing along this post from the Forum. I know that many of us struggle or have struggled with sibling issues and thought I wou...

Sick Day

by shannonj on 05.11.09 - public

My fourteen year old son has yelled at me all morning…..I make him mad, he says, for giving him the wrong answer, for frustrating and embarrassing him...

Title :

Description :

My fourteen year old son has yelled at me all morning…..I make him mad, he says, for giving him the wrong answer, for frustrating and embarrassing him.  His face is pale and there are pink half-moons under his eyes.  Although his cheeks are cool, his forehead is simmering.  When I lean near him, his long and bony arm swings erratic and accurate at the same time, managing to punish me for getting too close, for wanting more information when he, in his own estimation, is just fine.

Last night, during the hours of his usual deep sleep, he called out for help.  He felt “different” and needed a tub or something squirted up his nose, he said.  “You’re sick, mister” I explained, “and you need to stay in bed to feel better.”

“You mean,” he queried, “that I ate too much and I’m going to throw up?”  I nodded, knowing that his only memory of actually feeling this way followed a gluttonous date with a bowl of pinto beans and rice, served too big and eaten too fast.  This current sensation, though, has little to do with his last meal, as he consumed very little the day before, and more to do with his sister’s recent bout of a fast and furious stomach bug which resolved, fortunately, in 24 hours.  Hopefully, by this time tomorrow, he’ll be back to himself, or at least some less bitter and suspicious version of himself, all teenage angst and blame.

For now, though, he is sleeping.  His autism prevents him from knowing his own body well, knowing that closing his eyes will bring relief, and that dizzy fades when horizontal on a bed.  So, I sent him to time-out in his room…for yelling at me, for pounding the wall, for having a fever and for being washed out in a gray and yellow sort of way.  He complied with his punishment but not without his signature angry banter.  But once I covered his stilts-for-legs and turned off the light, his eyes closed without effort and sleep came quick.

I notice that his hair is bigger on his pillow for having thrashed more in the night.  He is curled toward the window which offers a sunny view of the freshly mowed lawn and the birds that race for the wet worms of spring.  I’d kiss him in his sleep if I could do it without waking him.  I’d like to give his dreams the assurance that he is a treasure, even as I rinse his soiled sheets, even as I need a nap too……..

Type :

Public Private

Photo :

Tags :

(comma separated)

Dreamers Needed....Apply Here

by shannonj on 05.08.09 - public

I thought I would pass this contest along because I have met so many of you amazing ladies here at Foggyrock that are making their dreams come true by...

The Invitation

by shannonj on 05.06.09 - public

In Wynn's lunch box this afternoon, I discovered a lavender invitation to a special Mother's Day Brunch next week at his school. I was immediately ta...

Title :

Description :

In Wynn's lunch box this afternoon, I discovered a lavender invitation to a special Mother's Day Brunch next week at his school.  I was immediately taken back to Mother's Day last year, when Wynn refused to allow me to come to his school.  Having only been home a few months from his stay at a residential treatment center for his anxiety and aggression, I let the issue go...just completely dropped it. It truly wasn't worth the drama.

Today, however, I decided to push my luck.  "Looks like I am invited to your school next week." I announced in Wynn's presence. "Says so right here on this invitation, see?"

"You're coming to my school?" Wynn asked, indignant. "You didn't come last year, so you can't come this year."

"Oh, this year is different.  You're older, more mature, and able to handle changes better.  It will be just fine and we'll have lots of fun!" I encouraged.

"Mom, I'm embarrassed!  You're embarrassing me by coming to my school!" Wynn responded.

"Now you know how I feel." chimed in Haley, my 12 year old daughter.

"I'm not going to go to school if you're going to be there." Wynn resolved.  I had to turn away so he couldn't see me smile at his problem-solving skills. "You're ruining my life!" he cried.

"Fine, fine....forget it. I'm not going to ruin your life." I caved.  "Have it your way."

"So you're going to stay at home?  You won't come to school?" asked Wynn, relieved.

"Right." I confirmed, as I crossed my fingers behind my back. Maybe, I thought, this is a good opportunity for a social story at school.  Something with a title like:

How to Survive When Your Mom Visits School....
or

Finding a Reason a Live After Your Mother Embarrasses You in Front of Your Friends...

or

Take A Deep Breath and Count to Ten, Your Mother Just Entered the Building.....

I've got one whole week to prepare my son for this brunch.  Wish him luck, because mama's gonna be there : )

Type :

Public Private

Photo :

Tags :

(comma separated)

Hyperbaric Accident: Press Release from Generation Rescue

by shannonj on 05.02.09 - public

Hyperbaric Accident

The following story has been communicated to Generation Rescue about a tragedy affecting a 4-year-old boy with cerebral pals...

Title :

Description :

Hyperbaric Accident

The following story has been communicated to Generation Rescue about a tragedy affecting a 4-year-old boy with cerebral palsy and his family.

According to sources, the boy was in a hyperbaric chamber at Ocean Hyperbaric Oxygen clinic today in Florida when the oxygen in the chamber ignited.  The exact cause of the fire is not yet reported.  At the time the chamber was inflated to 1.75 ATA and 100% oxygen was being used to fill the entire chamber.  These settings are uncommon and known to have added safety risks.

Most chambers are pressurized with room air and oxygen is only delivered to the face keeping the oxygen content low and safe throughout the chamber.  The clinic uses Sechrist & Vickers  hyperbaric chambers, and thus far it appears the accident was caused by human error (technician error).  While the technician was a Certified Hyperbaric Technician it seems that safety precautions were not adhered to. The boy is in critical condition.  The grandmother is also in the hospital.   As we understand this boy had completed 40 dives and was doing so well that his family wanted him to continue hyperbaric therapy.

Very few centers use 100% oxygen to inflate the chamber because of the added risk.  The pressures and oxygen levels used at the Ocean Hyperbaric Center in Florida are not typically used or recommended for children with autism.

Hyperbaric oxygen has been shown to safely help many children with autism.  Typical treatment levels for autism are from 1.3-1.5 ATA with oxygen levels are 24-30% which means the chamber air is safe and not flammable.

A CBS news story about this accident can be seen here: http://cbs4.com/local/Hyperbaric.Chamber.Explosion.2.999108.html

This is a horrible tragedy and our thoughts and prayers are with this child, his grandmother and their family and friends.

Type :

Public Private

Photo :

Tags :

(comma separated)

Nancy Wiseman's New Book discussed on Autismpodcast.org

by shannonj on 04.26.09 - public

From Michael Boll, the host of Autismpodcast:

Shannon Johnson of Foggyrock.com and I talk with Nancy Wiseman author of Could It Be Autism?: A Paren...

Title :

Description :

From Michael Boll, the host of Autismpodcast:

Shannon Johnson of Foggyrock.com and I talk with Nancy Wiseman author of Could It Be Autism?: A Parent’s Guide to the First Signs and Next Steps and, her latest book, The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child

Here is more about Nancy from her website, Firstsigns.org:

Nancy D. Wiseman

As the founder and president of First Signs , Nancy Wiseman is dedicating her life to improving the lives of children and families affected by developmental disorders. Since 1999, Nancy has made a significant contribution to changing policy, improving awareness, and changing pediatric practice in how we screen, refer, and detect young children today. Before devoting herself to First Signs , Nancy worked in corporate communications for over 20 years building brand awareness, educating the public, and generating qualified leads for international companies in the financial, travel, office products, computer, and software industries. She now utilizes her skills in fundraising and development, staff and financial management, film and video production, as well as public relations and education, to direct First Signs, Inc . She has counseled parents worldwide and she has appeared in interviews with USA Today, Parents, and NBC’s Today Show. She is the author of Could It Be Autism? A Parent’s Guide to the First Signs and Next Steps and The First Year®: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child . Nancy serves as president and treasurer and she is the mother of Sarah, who was diagnosed with autism at the age of two. Today—at age 13—Sarah stands as a powerful example of the impact that early identification and intensive intervention can have on young children with developmental delays and disorders. Nancy is the 2006 recipient of the American Academy of Pediatrics’ Dale Richmond/Justin Coleman Award for her outstanding achievement in the field of child development.

http://www.autismpodcast.org/?p=162

Type :

Public Private

Photo :

Tags :

(comma separated)

Movie and Popcorn for the Autism Community: Coming to a Theatre Near You on May 23

by shannonj on 04.22.09 - public

Don't miss the next Sensory Friendly Film!
Night at the Museum 2
May 23, 2009
10 a.m. local time

AMC Entertainment (AMC) and ASA have teamed up...

Title :

Description :

Don't miss the next Sensory Friendly Film!
Night at the Museum 2
 May 23, 2009
10 a.m. local time

AMC Entertainment (AMC) and ASA have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the "Sensory Friendly Films" program.

In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down, families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing - in other words, AMC’s “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.

Did you go to one of our previous Sensory Friendly Flims? Tell us what you thought!

Tickets are $4-6 depending on location and can be purchased on the day of the event.

Click here to find a location near you:
http://www.autism-society.org/site/PageServer?pagename=sensoryfilms

Type :

Public Private

Photo :

Tags :

(comma separated)

My New Favorite Natural Cleaning Supply

by shannonj on 04.22.09 - public

I just purchased a microfiber cloth at my local kitchen shop and I love it! I was there to buy a vegetable brush and happened to ask the sales lady w...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Delicious....with Ketchup

by shannonj on 04.22.09 - public

It's spring break here at our house. Both of the kids are home during this rare week when both of their schools have coordinated holidays. It is tri...

Title :

Description :

It's spring break here at our house.  Both of the kids are home during this rare week when both of their schools have coordinated holidays.  It is tricky to make plans as Wynn and Haley's interests have diverged and barely overlap.  While Haley wants to go letter-boxing with a friend, Wynn wants to walk the aisles of Walmart, searching for that one 
(appropriate) DVD that he has yet to view.  Haley wants to create something with wool and glitter, and Wynn wants to destroy evil with a rubber sword and homemade sound effects.

Monday arrived with higher than expected temperatures and I found myself surprised and amazed with the events of the day.  Early in the warm day, Haley invited Wynn to jump on the trampoline and I watched from the window and grinned and tried not to be noticed or disturb their sibling banter.  Later, Wynn asked Haley to help him look for creatures and again, I found myself blessed as I watched them disappear into the woods.  Haley is protective of Wynn, especially when he is gentle to her, and I knew she wouldn't let him go far.  I decided that this might be a good time to paint the new wainscoting in Wynn's room and headed upstairs to begin my project.

Too soon, it seemed, the glass door slid open and I heard Haley's infectious giggles.  "Mom, Wynn wants to eat worms!"  Wynn has been asking, lately, to eat a more varied diet and has specifically queried about octopus and squid.  I wasn't surprised that worms would interest him, and I certainly wasn't worried that he would actually eat one.  At 14, he often needs permission to push the envelope a bit and that is usually as far as it goes.  I assumed that as soon as I told him it was fine to eat worms, he would decide, on his own, that worms were disgusting and want nothing to do with them.  I was wrong.

"He's eating them with ketchup!  With ketchup and a fork!"  squealed Haley as she ran to her room and covered her head with a pillow.

I ran downstairs and into the kitchen to find him bringing into the house two more wiggling and dirty victims.  Without thinking, the first words that came out of my mouth were, "You can't eat those without washing them!".....and then I watched in shock as he rinsed the brown earthworms in water before drenching them with ketchup and swallowing them in one satisfied gulp.  "Can I eat them until I am full?" he asked, ketchup smears extending his greedy smile.

"Okay, no!"  My foot pounded the floor with firmness.  "You cannot eat another worm.  Those four you just ate may still be wiggling around in your stomach!"  I imagined the little fellows innocently growing and multiplying as they ingested the expensive probiotics and supplements that are a faithful part of every meal.  I remembered pulling worms apart as a kid, and watching one worm, instead of dying, turn into two living organisms. As my imagination took flight, I grabbed the ketchup bottle and tucked it safely in the fridge.  I handed Wynn a handful of digestive enzymes and a bag of carrots.  "Here, eat these at the table and I promise to make you a huge lunch."  A boy should never be so hungry...not even with ketchup on it.

Type :

Public Private

Photo :

Tags :

(comma separated)

An Autism Passover

by shannonj on 04.12.09 - public

From the Age of Autism Website...thought you might enjoy this father's perspective on in the holiday season:

http://www.ageofautism.com/2009/04/an-...

Title :

Description :

From the Age of Autism Website...thought you might enjoy this father's perspective on in the holiday season:

http://www.ageofautism.com/2009/04/an-autism-passover.html#more

The other morning my mother-in-law called to invite me to their Passover Seder.  My wife and son were away on a vacation, so it would just be me and my daughter, Jacqueline, who has autism and seizures.

Now I’m not Jewish, but everybody thinks I am.  Many of my life-long friends are Jewish, and I more closely resemble the Jewish side of my wife’s family than I do the Scotch-Irish side.  Even my wife thought I was Jewish when I met her, only to discover I was Roman-Catholic like her.

But regardless of the faith, the holidays for the past ten years haven’t been especially pleasant.  During the years when my daughter was most severely affected, she’d scream at the top of her lungs all day long and try to bite anybody who came near her.  She barely had the energy to stand, but she sure could scream.

And when she got stronger there was still the issue of her seizures.  Even this last Christmas when my son, Ben was in the throes of delightful eight-year-old boyhood as he ripped through his presents, was marred by the thought of my daughter sleeping in her bed after she’d had an early morning seizure.

Click link to read more....

Type :

Public Private

Photo :

Tags :

(comma separated)

What is your child's talent or skill?

by shannonj on 04.12.09 - public

Below is an article about a boy named Johnny with exceptional art skills. What does your child with autism do exceptionally?
Shannon

Children wit...

DAN! Doctors...Openings in May: Spots are filling up

by shannonj on 04.08.09 - public

DAN! Physician Biomedical
Patient Openings
May 2009

Autism Solution Center, Inc. has several patient spots open in the month of May 2009 to se...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Spring Cleaning

by shannonj on 04.06.09 - public

Today is the first chance I’ve had to clean up the yard. Evidence of the hard winter, once buried under mounds of snow, litters the ledge in front of...

Title :

Description :

Today is the first chance I’ve had to clean up the yard.  Evidence of the hard winter, once buried under mounds of snow, litters the ledge in front of the house and the garden in the back.  Branches, still green with life, lay twisted in defeat among the dead leaves. Acorns in their brownie-club berets tumble among the pinecones, little seed-package promises that they are.  Moss, triumphant and brave in its green uniform, glows from beneath the rubble, the victor of the winter’s long, harsh reign.

Most of the time, my boots cover wide swaths of the property, piling the largest branches together to be dragged, eventually, to the fire pit.  Sometimes, though, I bend lower and look closer, finding a  fairy village in  an over-turned stump surrounded by a moat of cold water that was, just yesterday, a billion snowflakes.  From the mossy castle, I carefully remove the pine needles that dove head-first from some high-dive limb in the canopy.

It will take weeks of Sundays to uncover our spring and summer yard.  We’ll keep marshmallows handy to blacken on skinny sticks as we char last season’s remnants, and sometimes, when the coals are hottest, we’ll tuck pockets of potatoes, carrots and onions, wrapped together in foil, among the heat for a smoky evening snack.  There will be black flies to swat and winds to tease the flames.  In time, our attention will turn from raking and gathering to tending tomatoes plants and cucumber vines and mowing tall grasses.  If we are lucky, we’ll remember to swing in the hammock and eat a lazy lunch on the deck before the days grow shorter and the birds use their vacation days to fly south.

Type :

Public Private

Photo :

Tags :

(comma separated)

Organic Candy 75% off......

by shannonj on 04.04.09 - public

Dear Feingold Friends & Members,

After nearly 60 years in business, the Simon Candy plant in Elizabethtown, PA is closing. Competition from inexp...

Title :

Description :

Dear Feingold Friends & Members,
 
After nearly 60 years in business, the Simon Candy plant in Elizabethtown, PA is closing.  Competition from inexpensive imports, rising costs, and the generally bad economy are all contributing factors.  The plant will cease operations sometime in May.
 
As a result, they are clearing out all of their remaining stock, including all COLLEGE FARM organic hard candy and NATUREPOPS lollipops.  For a few more weeks, we are offering all the items in our inventory at a discount of up to 75% off the suggested retail price through our selling website, http://SimonCandyShop.com.   This represents a one-time opportunity to stock up on our quality candies.  All College Farm flavors are Feingold-accepted, certified organic, gluten free, and made with only natural colors and flavors.  This is all first-quality candy with at least several months left before the “Best By” date.
 
For example, the NATUREPOPS Barn Tins, which sold in retail stores for $8-$10, are now just $1.99 each.  The colorful metal tins, universally described as VERY CUTE, contain 20 assorted flavor lollipops, and make a great gift item.  See them at http://www.feingold.org/enews/BarnTins.html.
To order these or any of the College Farm Organic line, use this link:  http://simoncandyshop.com/college-farm-organic.html. You can place an order any time day or night.   The website will only be operational for a few more weeks.  Naturally, quantities are limited.
 
I have been assured that it is still possible to get these candies in time for Easter - if you hurry.
 
Shula Edelkind, Editor
Feingold Email Newsletter
Feingold Association of the United States
http://www.feingold.org/newsarchive.html
http://www.ADDdiet.com
http://www.school-lunch.org
554 E. Main Street, Suite #301
Riverhead, NY  11901
1-631-369-9340

Type :

Public Private

Photo :

Tags :

(comma separated)

Help Carly Fleischmann get on Larry King on CNN

by shannonj on 04.03.09 - public

Read Carly's letter and click the following link to sign her petition:

My name is Carly Fleischmann and as long as I can remember I’ve been diagnos...

Title :

Description :

Read Carly's letter and click the following link to sign her petition:

My name is Carly Fleischmann and as long as I can remember I’ve been diagnosed with autism.
I am not able to talk out of my mouth,
however I have found another way to communicate by spelling on my computer.
I used to think I was the only kid with autism who communicates by spelling but last year I met a group of kids that communicate the same way. In fact some are even faster at typing then I am.

Last year a story about my life was shown on ABC news, CNN and CTV here in Canada.
After my story was played I kept on getting lots of emails from moms, dads, kids and people from different countries asking me all sorts of questions about autism. I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.

That is why I want to go on Larry King’s show on CNN, to be able to tell the truth and secrets of living with autism. But I need your help. My goal is to get five thousand signatures in two weeks for my petition to be on CNN with Larry King.

I know what you are thinking, probably the same thing my mom and dad are……it’s impossible. But if I have learnt one thing over the years of having autism, it is that anything is possible if you just believe. It’s just when you don’t believe, that’s when you don’t succeed.
So I need you to believe and sign my petition page and go into your email and tell all your friends you believe and get them to sign my petition and maybe, just maybe they’ll do the same thing and before you know it we will have all five thousand signatures.

My aunt’s friend set me up with a twitter page so you can follow my journey to sit and talk to Larry King. Thank you for believing in me as I believe in all of you.

Your optimistic and excited friend,
Carly Fleischmann

http://www.ipetitions.com/petition/carlyonlarryking/index.html

Type :

Public Private

Photo :

Tags :

(comma separated)

The Doctors TV Show Looking for Family of Newly Diagnosed Child with Autism

by shannonj on 04.02.09 - public

Has your child recently been diagnosed with Autism? Are you at the beginning of the whole process, trying to figure out which doctors to see, what pro...

Autism: The Musical...Listen to the Interview

by shannonj on 03.29.09 - public

From Michael Boll of www.autismpodcast.org

Episode 79 | Elaine Hall, Autism The Musical and The Miracle Project

Shannon Johnson of Foggyrock.com...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

New Podcast: iPhone Application to Help the Pre-Verbal and Non-Verbal Individuals Communicate

by shannonj on 03.25.09 - public

From Michael Boll of Autismpodcast:
http://www.autismpodcast.org/?p=155

Shannon Johnson of FoggyRock.com and I talk with the co-creators of iConve...

Email Your Congressman or Representative Today! It's so easy.....

by shannonj on 03.24.09 - public

Hi Foggyrockers:
Below is a letter from Lee Grossman, the President of the Autism Society of America, urging all of us who care about the autism comm...

Title :

Description :

Hi Foggyrockers:
Below is a letter from Lee Grossman, the President of the Autism Society of America, urging all of us who care about the autism community to get in touch with our representatives in Congress.

Below, you can read the details regarding the appropriations being requested for this very worthy group of individuals....All you have to do, however, is click on the link, fill out the form with your contact information and hit send.  Your US Representatives will receive an email with all of the details outlined in the letter.

It will take 2 minutes and may make a world of difference. (Oh, and sign the comment box below once you fill out the form--let's see how many participate!)

Thanks! Shannon Johnson
https://secure2.convio.net/asa/site/Advocacy?cmd=display&page=UserAction&id=240

Urge your Representative to Support 2010 Autism Appropriations

As the fiscal year 2010 budget works its way through Congress, it is vital that appropriations are included for autism spectrum disorders. Please take a minute this afternoon to ask your member of the U.S. House of Representatives to sign on to the Coalition for Autism Research and Education (CARE) appropriations requests for $211 million for autism in the Labor, Health and Human Services, and Education budget and $15 million for autism in the Department of Defense budget.

We are asking that the Labor, Health and Human Services, and Education Subcommittee provide full funding for the 3rd year of the Combating Autism Act (CAA) in 2010. Implementation of the CAA is critical, because it directs the Department of Health and Human Services to begin coordinating all of the activities among its agencies that work on autism, including National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration. For Fiscal Year 2010, the CAA authorizes a total of $211 million for a variety of critical autism activities, including:

--$20.5 million for the CDC to conduct its Developmental Disabilities Surveillance and Research program; 
--$47 million in the HRSA account for HHS to carry out autism education, early detection, and intervention programs; and 
--$143.5 million for the HHS Secretary and the NIH to operate the Interagency Autism Coordinating Committee, implement the expansion, intensification and coordination of research on ASD, and fund and review autism centers of excellence.

We are also asking that the Department of Defense Appropriations Subcommittee provide $15 million for autism research in the Research and Development of Defense Health Programs account. Many military families are touched by autism - based on current prevalence rates, as many as 12,000 children in military families (active duty, reserve and guard) may have autism. These families are substantially affected by the financial and emotional costs of raising a child with autism. In fact, given the frequent duty station changes and social turmoil of military service, military children with an autism spectrum disorder often face additional challenges with which their civilian counterparts do not have to contend. Care for dependents with autism is also a significant direct cost to the Department of Defense.

To help improve the lives of all affected by autism, simply take a moment and click here to send an email to Congress today.

Thank you for your support of this important issue.
Sincerely,
Lee Grossman
President & CEO
Autism Society of America

Type :

Public Private

Photo :

Tags :

(comma separated)

Jeans...Size 18! At Old Navy

by shannonj on 03.18.09 - public

For those of you who have boys like Wynn, skinny and all legs, you might be excited to know that Old Navy carries size 18 in the boys department! Thi...

Be an Autism Mom Cover Model!

by shannonj on 03.15.09 - public

The April issue of The Autism File magazine (http://www.autismfile.com/) features six autism moms, dressed in black, and ready to take on whatever mo...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Send a Card to President-elect Obama

by shannonj on 03.15.09 - public

Send a Card to President-elect Obama

MomsRising.org actively supported mothers' needs throughout the presidential campaign. Now that the race is ov...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Vitamin D3 Deficiency in Autism

by shannonj on 03.12.09 - public

I just wanted to share this website regarding Vit. D3 and the implications for improvement on doses higher than the RDA.....Wynn's doctor put him on 4...

Arthur Series Looking for New Character

by shannonj on 03.08.09 - public

You can create a new friend for Arthur!
If you are between the ages of 6-12, you're invited to send in your idea for an exciting new character—one w...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

The Black Balloon...Roger Ebert Reviews New Movie

by shannonj on 03.08.09 - public

At the center of "The Black Balloon" is Toni Collette's performance as the mother of an autistic son. The way she meets this challenge opens a way t...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Urge Your Legislators to Support the ABLE Act!

by shannonj on 03.05.09 - public

The Autism Society of America is pleased to support the Achieving a Better Life Experience Act of 2009, ("ABLE" Act), S. 493/H.R. 1205. This legislati...

Title :

Description :

The Autism Society of America is pleased to support the Achieving a Better Life Experience Act of 2009, ("ABLE" Act), S. 493/H.R. 1205. This legislation was recently introduced by Senators Bob Casey (D-PA), Richard Burr (R-NC), Edward Kennedy (D-MA) and Sam Brownback (R-KS) in the Senate and the House companion bill was introduced by Reps. Ander Crenshaw (R-FL), Patrick Kennedy (D-RI), Cathy McMorris Rodgers (R-WA) and Kendrick Meek (D-FL). This critically important piece of legislation has the potential to help improve the lives of all affected by autism.

This legislation is designed to encourage individuals with autism (and other disabilities) and their families to save for disability-related expenses and will supplement, rather than to replace, benefits provided by other sources such as Medicaid and private health insurance coverage. The ABLE Act authorizes "ABLE Accounts," which are similar in many respects to existing Individual Retirement Accounts (IRA) and 529 college savings plans. Provided certain rules are met, these disability savings accounts will be exempt from federal taxation.

Families of individuals affected by autism often find themselves in a position of financial frustration. Our families want nothing but the best for our children and we are often faced with astronomical expenses in connection with providing appropriate services.

To help improve the lives of all affected by autism, simply take a moment and click here to send an email to Congress today. https://secure2.convio.net/asa/site/Advocacy?pagename=homepage&page=UserAction&id=227&JServSessionIdr008=9z25go93h1.app26a

The time for action is NOW! Urge your U.S. Senators and Representative to co-sponsor the Achieving a Better Life Experience Act of 2009, ("ABLE" Act), S. 493/H.R. 1205

Thank you for your support. 
Sincerely,
Lee Grossman
President & CEO
Autism Society of America

Type :

Public Private

Photo :

Tags :

(comma separated)

Autism Podcast: Reciprocal Imitation Therapy (RIT)

by shannonj on 03.01.09 - public

From Michael Boll of autismpodcast.org

I talk with Dr. Brooke Ingersoll about her relatively new treatment: Reciprocal Imitation Therapy (RIT). We...

Things I Like......

by shannonj on 02.24.09 - public

This is from the latest newsletter, but I thought it would be fun to share here and see what you have to say as well:

A few things I like. See if ...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Fourteen Candles

by shannonj on 02.15.09 - public

Happy Birthday to Wynn. Fourteen candles for your cake. Except we won’t have a cake today. You would want to eat the entire cake, and wouldn’t want...

Title :

Description :

Happy Birthday to Wynn.  Fourteen candles for your cake.  Except we won’t have a cake today.  You would want to eat the entire cake, and wouldn’t want to share, I’m sure.  So, while you were in time-out today, I baked cupcakes, gluten free but delicious.  I’ll serve you one or two or three, and freeze the rest for other special occasions. But you’ll probably find the hidden booty on one of your wild treasure hunts, and eat them frozen while I chase you through the yard, you laughing hysterically, me feeling foolish and never fast enough. Vanilla cupcakes, however, won’t keep you up all night like that bag of chocolate chips you inhaled last summer while I wrestled you to the ground in the backyard, flip-flops and chocolate chips flying over head.  Your Dad and I took shifts that night so that you would not be alone during your chocolate high.  Finally, at 3 am, you were ready for bed and fell asleep only after promising not to be a “fief” ever again.

Happy Birthday, my boy.  This year, for some reason, the significance of the day hasn’t even crossed your mind.  Maybe because you have been too busy growing out of all of your jeans and making me wonder where I will find pants long and slender enough for your new body.  Last year, we celebrated your birthday many days in advance because you didn’t understand the wait.  You didn’t care which day was circled on the calendar and just wanted something sweet and soon!  I’ve been grateful for the extra time to plan this year, but saddened that my organization relies so heavily on your inability to completely grasp space and time, calendars and holidays.

Why is it that you must always wake up so early on weekends?  At five-thirty this morning, Dad climbed in your bed, hoping to settle you back into slumber for another precious hour or two.  I covered my head with my pillow, but even with the door shut, I could hear your rapid questions and knew by your volume that this day had certainly begun.  I wasn’t ready for this day, your birthday, number fourteen and all it brings.

I cried while making breakfast.  There was too much emotion inside to contain. You hugged me from behind and let your cheek touch mine while apologizing for yelling in that deep voice that seems to be reserved, of late, for me.  I wonder if all mothers feel this tender and vulnerable on their children’s birthdays.

The camera is charged, even though you hate to have your picture taken and always run from anything that resembles a flash.  Maybe, if you are distracted enough by cupcakes and candles, I might be able to capture your image before it changes again, your face thinner, your hair darker and longer, eyes set deeper.

It’s your birthday, big boy.  Fourteen years since you were born in a February storm.  I remember the icy roads on the way to the hospital, your dad’s nervous pacing, and the final push that made us a family.  I miss your swaddled warmth in my arms, the sweet scent of your newborn breath.  I miss knowing what you needed…being what you needed.
I knew, back then, that this day would come.  I just had no idea it would make me so sad.

Type :

Public Private

Photo :

Tags :

(comma separated)

Renovations

by shannonj on 02.05.09 - public

I just read this article from the Chicago Tribune about a family who designed a safe and appropriate home for their adult son with autism. They took ...

Title :

Description :

I just read this article from the Chicago Tribune about a family who designed a safe and appropriate home for their adult son with autism.  They took into consideration everything that a home would need to keep him safe, prevent dangerous situations from arising, and help him live happily in a community.....
http://www.chicagotribune.com/classified/realestate/advice/chi-0125-cover-autismjan25,0,7120738.story

It made me think about the constant adaptations that we make to our home to make it appropriate for Wynn.  We added a quiet room off the kitchen, filled it with pillows and put wood siding on the walls to prevent him from putting holes in them when he is angry.  We've taken picture frames off of the walls throughout the house as they can become targets when he wants our attention.  There are no vases or nik-naks sitting around and anything of value was closeted years ago......Sometimes I think that our house looks sad in its bare-ness, but, for now, it is just the way that Wynn needs it.

How has your household adapted in order to meet your child's needs?

Type :

Public Private

Photo :

Tags :

(comma separated)

Mama Called the Doctor and the Doctor Said......

by shannonj on 01.29.09 - public

I did it! I just got off of the phone with my son's psychiatrist. After all of your great advice and encouragement regarding my last post
( http:/...

Title :

Description :

I did it!  I just got off of the phone with my son's psychiatrist.  After all of your great advice and encouragement regarding my last post 
( http://www.foggyrock.com/MyPage/wynnsmom/Composition/2396#showcomp ), I decided that a call was certainly in order.

I think you would be proud of me as I kept my emotions in check and was very respectful.  I started off by letting him know that my son's last visit was disappointing and that I felt he made a lot of assumptions that were not based on his knowledge of Wynn, our family or our family culture (since he had not yet read the files).  I said that I felt like his lecture about parenting was mis-placed and that unless he was willing to get to know us better, the relationship was not going to benefit Wynn.  I told him that I wanted his knowledge and experience to help me navigate Wynn's teen years, but that I needed to be treated as intelligent and respected as a good parent.  I also let him know that I felt punished because he insisted we come back for another visit in a month, when we had agreed earlier that, since we were not changing any meds, Wynn would only need to be seen every three months. He listened very well and I appreciated his patience as I vented.

When I was done, he confirmed that he too felt discontent with the last visit.  He said that he felt like I had come into his office with an agenda (because I had asked what he knew about fMRIs and also the latest research on Namenda --an Alzheimer's drug being tested on individuals with autism) to get some new treatments started and was a little put off by my questions.  I guess he thought I had already decided on the next line of treatment, when in reality, I was just asking questions (I'm very curious)....So he got defensive and started challenging my parenting skills and it went downhill from there.....He argued that he insisted on a more frequent appointment schedule because he thought I was inferring (with all my questions) that Wynn needed more support from him.

We laughed at our misconceptions and agreed to do a better job at communicating more clearly and assuming less often.  I rescheduled the next appointment for April and hung up the phone feeling much better.

Thanks for your support.

Type :

Public Private

Photo :

Tags :

(comma separated)

Naughty Parent Lecture....Ever Get One?

by shannonj on 01.26.09 - public

I took my son to his psychiatrist last week for his second visit. Wynn is on medication for his moods and anxiety and needs to be closely monitored. ...

Title :

Description :

I took my son to his psychiatrist last week for his second visit.  Wynn is on medication for his moods and anxiety and needs to be closely monitored.  (I don't, btw, recommend the use of medications if at all possible.  Unfortunately, without them right now, Wynn would not  be able to be safe enough to live at home.)
We've had some amazing doctors in the past, but our last one moved on to a different position and so we had to find this new psychiatrist. We're still in the "getting to know you" phase with this new one.

Since Wynn becomes anxious if we talk about his issues when he is in the room, I requested that I be able to speak with the doctor alone first.  He ushered me back to his office and let me know that he hadn't quite had the time to go over Wynn's records yet.  Then he asked how things were going with Wynn.  I shared the things that I couldn't talk about in Wynn's presence--his challenging behaviors etc.  The doctor asked me to describe what he likes to do for fun.  Unfortunately, Wynn is in a phase where all he wants to do is either watch tv or talk about movies.  And he also complains alot that we don't let him watch what he wants, in particular, grown-up movies.  It is a dilemma, because for most of the last year, Wynn didn't have the attention to watch much tv, and all of a sudden he does.  We like the growth in attention span, but don't like it's narrow focus.....
Anyway, I thought I might get some helpful advice or at least some encouragement from the doctor...something I could take home and practice, some tools for this stage of development.  Nope.  Instead, I got another "Naughty Parent Lecture", as I like to refer to them.  This is not the first time, and they usually come for people who don't know my child or our situation well at all.  They simply assume that I have never had an intelligent thought or idea, never applied any of the basic rules of child-rearing, and conclude that their diagnosis stems from a parent who is just a wimp.  All of this from a guy who hasn't even read my son's file.

I listened patiently and respectfully, but left with a knot in my stomach.  It is really hard to find psychiatrists for children my son's age, but my gut is telling me that I need to find someone more respectful...........Today, I will spend time deciding whether or not I should call this doctor and share my concerns or not....

Have you ever had such an experience?  What did you do?

Type :

Public Private

Photo :

Tags :

(comma separated)

Foggyrock Newsletter: Jan. 20

by shannonj on 01.21.09 - public

Like most of you, I watched the Inauguration today and took in all that it means for our country and our future. The solemnity of the occasion was ev...

Title :

Description :

Like most of you, I watched the Inauguration today and took in all that it means for our country and our future. The solemnity of the occasion was evidenced by the prayers that buffered either side of the swearing in of President Obama. As Americans looked upward for strength and guidance, I recalled a prayer that I read here on Foggyrock just a few weeks earlier. I'd like to share with you Seth's composition that he posted just after the election results were in. Seth is 16 years old, has autism and communicates through typing. I think that you will appreciate the beauty and the wisdom that Seth brings to this community and to our new administration.

A Prayer for Our New President

by Seth

lord

i pray that the mighty popular president elect obama will know that you are the one pivoting the earth on its axis
hopeful that president obama will give the glory to you the savior of all
nurture him to praise you
prosper our country
light his path
protect him and his family
let his presidency be one of headstrong vigilance
help him to lead our country to independence
hold his hand and give him strength
i pray for a personal revival for all who hold office in his administration
i pray in the name of jesus
the proud popular protector of our world

amen and amen

You can read more of Seth's insight on Foggyrock.com
http://www.foggyrock.com/MyPage/Seth

Type :

Public Private

Photo :

Tags :

(comma separated)

Autism and Haircuts

by shannonj on 01.04.09 - public

I had two goals during this winter break:
1) get Wynn to the hospital lab for another blood draw before the new year (our deductible has been met an...

Title :

Description :

I had two goals during this winter break:
1) get Wynn to the hospital lab for another blood draw before the new  year (our deductible has been met and I wanted to take advantage of that fact)
2) get Wynn into a hair salon for a professional haircut

On the Tuesday after Christmas, and after an hour long (no exaggeration) tantrum, Wynn bravely tromped into the lab and totally wooed the technicians with his banter and questions.  No one would have ever guessed that he was freaking out just moments earlier.

Then, on Wednesday morning, and after a shorter 15 minute tantrum, Wynn and I showed up for the first appointment at my friend's shop in town.  Lucy, the owner, has been cutting my hair since I first met her back in 1998 in the waiting room of our mutual speech therapist and occupational therapist's office.  We bonded each week while we waited for our children to finish their sessions.  Lucy's daughter didn't have autism, but sensory issues that needed much attention.  Later, she would adopt a son who would eventually be diagnosed with autism.  You might imagine that conversations that we have each month as she washes my hair and shapes up my bangs.....When I mentioned that I was not able to properly trim Wynn's longer hairstyle, she  worked it out to be available early in the morning so we could have the shop to ourselves.  She reminded me that she has seen it all and wouldn't be in the least bit intimidated by any behavior Wynn might demonstrate.

So, on Wednesday, Wynn did what he is doing more and more often---he made me proud.  He wore the cape, he sat tall and held his head just so.  He answered Lucy's questions ("What is your favorite tv show?", she asked.  "Pokemon", Wynn answered without hesitation and then quickly flushed as he caught my reflection in the mirror.  He knows that mom doesn't approve.), leaned over when she shaved his neck and even let her use the razor to trim around his ears.
And, I think, he felt proud of himself too.

We've already discussed the next haircut.  I want him to grow accustomed to such visits and appointments.  I want him to be able to accept assistance from others, to find help within our community and to learn to trust in a group of folks, like Lucy, who want nothing more than to make a haircut a good experience....safe and good.

Type :

Public Private

Photo :

Tags :

(comma separated)

Opportunity to Invest in Hope...

by shannonj on 12.27.08 - public

Change is coming from a chemistry lab in Lexington, Kentucky.

In 2008, after years of work, Dr. Boyd Haley and his team put the finishing touche...

Title :

Description :

Change is coming from a chemistry lab in Lexington, Kentucky.
 
In 2008, after years of work, Dr. Boyd Haley and his team put the finishing touches on OSR#1, a dietary antioxidant which helps maintain a healthy reduced glutathione level in the body. 
 
Boyd's company, CTI Science Inc., has successfully brought OSR#1 to market. In the process, CTI Science Inc. has proven OSR#1 to be without toxic effects and has initially studied its effectiveness with regard to helping maintain a healthy gulatione level. A healthy glutathione level is likely the first step in developing an overall protocol for maintaining good health, but there is more to be done.

You are receiving this email in part due to your great work within the autism community to advance biomedical treatments.  You are letting the world know that improvement and recovery are possible. As people with ASD often have nutritional deficiencies and are prone to a low glutathione level, and as OSR#1 helps maintain a healthy glutathione level in people with sub-optimal diets, individuals with ASD may benefit from OSR#1. 
  
CTI Science Foundation will help fund clinical trials to document the best ways to maintain healthy glutathione levels. The foundation will seek to provide OSR#1 to those who would potentially benefit from it worldwide regardless of their ability to pay.
 
These initial projects will require private funding through the generosity of concerned citizens and we ask that you consider a tax deductible donation before the year's end to CTI Science Foundation.  Those who donate in 2008 will be remembered as Founding Donors. 
 
The CTI Science, Inc. and CTI Science Foundation websites are set to launch in early 2009.
 
If you are in a position to contribute to this effort, please send a check before the end of this year (checks mailed in 2008 are deductible for 2008) to:
 
CTI Science Foundation
P.O. Box 813
New York, NY 10014
 
Please feel free to forward this email to others - both inside and outside the autism community - seeking worthy foundations to support as part of their 2008 tax planning.
 
If you have any questions, or for wire transfer instructions, please contact me privately at kevinbarry239@gmail.com.
 
Wishing you and your family Happy Holidays and a Happy New Year,
 
Kevin Barry
President and Chairman of the Board
CTI Science Foundation

PS-  This message was featured on the Age of Autism blog:

http://www.ageofautism.com/2008/12/cti-science-foundation-where-autism-treatment-meets-generosity.html

Type :

Public Private

Photo :

Tags :

(comma separated)

Sign up to lead a health care discussion over the holidays

by shannonj on 12.19.08 - public

From Change.gov: The Office of the President Elect:

(As posted at http://change.gov/page/s/hcdiscussion )

"President Elect Obama's transition...

Title :

Description :

From Change.gov: The Office of the President Elect:
 
(As posted at http://change.gov/page/s/hcdiscussion )
  
"President Elect Obama's transition team is asking for citizens to sign up to lead a health care discussion over the holidays.
 
Health care is a top priority for President-elect Obama and for Senator Tom Daschle, Secretary-designate for Health and Human Services (HHS). They both are committed to health care reform that comes from the ground up -- that's why this holiday season, we're asking you to give us the gift of your ideas and input.

Please sign up to lead a Health Care Community Discussion in your home, community center, or even a local coffee shop, anytime until December 31st.
 
We will provide you with a special Moderator's Guide that will give you everything you need to get the discussion going. Secretary-designate Tom Daschle will even choose some discussions to attend in person."

Click here for more information and to sign up to lead a discussion:
 
http://change.gov/page/s/hcdiscussion
 
In response to this request, Dr David Berger, Board Certified Pediatrician from Tampa, FL, will be leading a discussion on Saturday, December 27, 2008 at 3:30PM at the Jimmie Keel Library in Tampa. The main focuses of the discussion will be increasing research and insurance coverage for biomedical/alternative therapies and vaccine safety.
 
If you wish to attend this event, please RSVP to emily@wholisticpeds.com .
 
In order to involve as many people around the country as possible, there will be an online live webcast of this discussion. Please RSVP if you are interested ASAP to lab@wholisticpeds.com , as there is currently a limit of 75 viewers at a time, but if the demand is high enough the webcast will be moved to a larger server.
 
The link for the webcast will be sent by email on 12/26 to those who sent in an RSVP email. All participants, either in person or on the webcast, will also be emailed a Participation Guide which can be filled out after the event. This provides a survey and questions to be answered, so that the opinions of each participant can be registered directly with the Health Care Transition Team.

Type :

Public Private

Photo :

Tags :

(comma separated)

Get Involved! A message from ASA....

by shannonj on 12.12.08 - public

It is time for aggressive action from the grassroots level. President-Elect Obama and the Transition team need to hear from ASA and our community in a...

Title :

Description :

It is time for aggressive action from the grassroots level. President-Elect Obama and the Transition team need to hear from ASA and our community in a VERY BIG way!
 
Please visit the Change.gov health care page (http://www.autism-society.org/site/R?i=aCQvTrM1gG1LYvTiUamO4Q.. ) and advance the agenda to support individuals with autism and their families. Here, there's a button where you can submit your ideas for change. The more people write in to tell the new administration their autism concerns, the bigger chance we have of improving the lives of all affected by autism.
 
Click here for some suggested language: http://www.autism-society.org/site/R?i=WpsCW-09nwt_xTYgSxx0Xg..
 
Tell the new administration
your ideas for Autism
VISIT CHANGE.GOV
http://www.autism-society.org/site/R?i=shO8Y8GFFxVSkrxW48Z2BQ..
 
TELL A FRIEND
http://www.autism-society.org/site/R?i=1Z0NZxnEnkxLiOcdfYDnHw..
 
Please pass this information on to family, friends, neighbors and anyone else you know who has an interest in improving the lives of all affected by
autism.  Then, ask them to go to the site and do the same. Together, we can create positive change!
 
Sincerely,
Lee Grossman
President and CEO
ASA Member since 1991
Parent of a son with autism

Type :

Public Private

Photo :

Tags :

(comma separated)

The "Perfect" Tree....Dec. 9 Newsletter

by shannonj on 12.09.08 - public

We bought a Christmas tree last night, tall and round……

Wynn’s afternoon had been rough and rowdy—certainly not the kind of day you reward with a s...

Title :

Description :

We bought a Christmas tree last night, tall and round……

Wynn’s afternoon had been rough and rowdy—certainly not the kind of day you reward with a special trip to town, but a part of me believed his moody behavior was related to his inability to wait any longer for a tree.  Sure enough, as soon as we mentioned our desire to pick out a tree, his pacing slowed down, his face relaxed and his smile returned.

One catch, though.  Mom had to drive, not Dad.  Wynn insisted.  I rolled my eyes in Steve’s direction.  As parents, we have become accustomed to Wynn’s need to control certain aspects of every event, every day.  “Is that alright with you, Pop?” I asked Steve.  We’ve read Ross Greene’s book, The Explosive Child, and know the game well……we decided that this wasn’t a battle we wanted to fight.  It certainly wasn’t something that belonged in basket A or B……so I drove.

Haley stayed home.  Her choice.  Sometimes a sister needs to be alone.  The mother in me wanted her presence, wanted the family-of-four-package deal.  I wanted her smile in the photos, her opinion on the width and girth of the tree.  Her soprano to blend with my alto in “O Christmas Tree, O Christmas Tree”…… But I also wanted her to have a break.  And to know that Christmas isn’t about finding the perfect tree, but instead, about the giving and receiving of gifts, like grace and respect….and time alone with the Disney Channel.

So our party of three shivered all the way to town, covered in blankets while Steve fiddled with the heater and wondered aloud why cold air was still coming through the vents.  On our coldest night of the year so far, we found that one Christmas tree vendor after another had gone home early this evening.  Even Fat Boy’s was closed, and someone was always selling something there!

I worried how Wynn would react if we had to announce that there were no trees for sale tonight.  I wondered how desperate we would find ourselves and how far we would drive into the dark.  “Should have brought a hatchet.” I thought out loud as we passed forests of  conifers and evergreens in this the pine tree state.

Our last hope would be the drive-in diner on the left.  The kids used to call the establishment, “The Pig with the Pumpkin Pie” as a wooden porcine cut-out once announced its daily menu.  As we veered close, we noticed that the lot was indeed full of fresh, green trees leaning this way and that, huddled together in the cold.  But the lights that hung above and around them had been shut off and no glove-clad lumberjack was around to close the deal.  Perhaps we could just leave a check under the door…..

I parked in such a way as to throw light on the trees and make it easier to find the right size and shape.  Steve, all brave and super-hero, jumped out of the passenger seat and headed for the restaurant.  Within seconds, he’d found someone equally as brave, and twice as bundled up, to gladly take a check and share some rope for the roof.  I nodded through the frosted window as Steve pointed to the tree standing nearest to our vehicle.  Every tree looked perfect at that sub-zero moment in time.

Fifteen minutes later we were warming by the fire and tilting our heads at the newest member of the family.  If we leaned just so and shut one eye, it was indeed just perfect.

Type :

Public Private

Photo :

Tags :

(comma separated)

One Year Ago Tonight: Dec. 4 Newsletter.....

by shannonj on 12.05.08 - public

One year ago tonight I was a very sick mom. Sick with worry, with fear, with dread….and with excitement. The next day we were to pick Wynn up from the...

Title :

Description :

One year ago tonight I was a very sick mom. Sick with worry, with fear, with dread….and with excitement. The next day we were to pick Wynn up from the hospital, where he had lived for 18 months. He had been home for short weekend visits—none of which were sleepovers—they were not allowed, and most of which did not go well. He wasn’t being discharged because he had made any sort of turn-around. As a matter of fact, in many ways his behaviors were more severe and more dangerous. He entered the hospital with anxious panic attacks which had him threatening to jump out of a moving car and begging God to let him die. He would be coming home taller, hungrier, and mad as hell. Mad that we had taken him to a hospital and mad that we were bringing him home. Mad that the sky was blue and mad that Santa had a beard…..mad, it seemed, just to be mad. And yet the doctors and therapists had done all they knew to do for Wynn. Once again, he was an unsolvable mystery. No one knew what else could be tried, so we made plans to bring him home.

In preparation for his return, I changed the sheets on his bed that I hadn’t touched since the day he left. In his absence, I was worried that he would never sleep in his own bed again and I couldn’t bear to wash any semblance of his presence away. Crisp, clean sheets on the eve of our reunion felt right and I couldn’t help but attach some hope and meaning to their freshness, their newness, in this new beginning for Wynn.

Leaving his room, I let my hand run across the surface of his hardwood door. The inside of that door could tell many stories. Tales of tantrums and time-outs, of isolation and anger. Of days when we didn’t know how to help him, and didn’t feel safe beside him. Nights when we would lay in exhaustion on the floor outside his room, praying for peace to come over him, for the screaming to cease, for the rage to peter out. His fists and feet left pocks and indentations and scuffs all over the door…..the Braille of his angst, the language of his desperation. I made Steve promise that if we ever moved, we would take that door with us. I never wanted to forget what that door had seen.

The mirror at the base of our staircase held a pair of hand prints for the duration of Wynn’s time away. They were left there during one of Wynn’s confusing dances of anxiety. I left them, too, because they were his. Maybe those greasy lines and swirls contained secrets of his darkness, and perhaps the key to his release. If nothing else, they were a silent call for help. As I passed those hand prints every day, I vowed to always be there for Wynn. I wiped them away only when I knew his homecoming was nigh.

The morning of December 5, 2007 is a blur. I remember placing cookies on a tray to leave with the hospital staff. It was cold outside and I grabbed a blanket for the back seat.
Someone cared for Haley, I think, as I don’t remember her coming with us. She’d seen enough lately…we wouldn’t need her witness today. At the hospital, we sat at a long table and signed papers by the X. I’d sign anything to bring Wynn home, and yet with each stroke of the pen, my worry increased. I didn’t know if I could actually meet my child’s needs anymore. An entire ward on a residential unit couldn’t make him better, so where did our boldness come from? In reality, Steve and I knew that Wynn’s time back home might be short. We’d read the daily reports, heard the details of the aggressions and the restraints. We saw his strength in the heat of his anger and recognized the hazards of puberty and growth spurts combined. But we owed this to Wynn because he had been so very brave. We wanted him to see that we believed in him and we wanted our belief to be enough. So we were hopeful but fearful; a combination of emotions that felt like two weather fronts colliding.

Steve was strong that day at the hospital. He shook hands and accepted hugs from the doctors and nurses and staff who had bathed, fed, entertained and nurtured Wynn for over a year. I, on the other hand, was trembling inside. If anyone touched me I knew that I would crumble. A hug that day would ruin me and my charade would be over. I was stiff and stoic as I nodded thank you and goodbye….and have a cookie.

Wynn cried all the way home. He called out for staff by name. I sat with him in the back seat but he refused my comfort. He was afraid too. The crumpled blanket lay between us and I watched his tragic reflection in the window. No heart has ever broken so thoroughly. His nor mine.

And yet, here we are, still a family one year later. Somehow, the minutes and months have faded into yesterdays that were always at the very least survived, sometimes even with a bit of success. For example, just yesterday Wynn attended PE for the very first time at his school. He vacuumed the carpet underneath the kitchen table. And at Petland, he let a chocolate lab lick his hand. It took many, many baby steps, lots of patience and the faith of family and friends……and almost exactly one year.

Welcome home, Wynn…..We still believe in you.

Type :

Public Private

Photo :

Tags :

(comma separated)

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 ...

Title :

Description :

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.

Type :

Public Private

Photo :

Tags :

(comma separated)

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 ...

Title :

Description :

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.

Type :

Public Private

Photo :

Tags :

(comma separated)

Look where Foggyrock is Showing up:

by shannonj on 11.26.08 - public

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

Embarrassing Mommy-Moments

by shannonj on 11.24.08 - 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...

Title :

Description :

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......

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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!

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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.......

Type :

Public Private

Photo :

Tags :

(comma separated)

The Halloween Jitters

by shannonj on 10.31.08 - 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...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

A Field Trip Success Story

by shannonj on 10.27.08 - 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...

Title :

Description :

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

Type :

Public Private

Photo :

Tags :

(comma separated)

Important Election Survey.....

by shannonj on 10.23.08 - 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 10.17.08 - 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...

Title :

Description :

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.

Type :

Public Private

Photo :

Tags :

(comma separated)

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 ...

Title :

Description :

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!

Type :

Public Private

Photo :

Tags :

(comma separated)

Survey: School Hours

by shannonj on 10.10.08 - 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 10.05.08 - 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...

Title :

Description :

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/

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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........

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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....

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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

Type :

Public Private

Photo :

Tags :

(comma separated)

My Stroke of Insight

by shannonj on 09.08.08 - 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...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

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 ...

Title :

Description :

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

Type :

Public Private

Photo :

Tags :

(comma separated)

Sean Barron on Autismpodcast.org

by shannonj on 08.03.08 - 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...

Title :

Description :

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.

Type :

Public Private

Photo :

Tags :

(comma separated)

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 ...

Title :

Description :

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

Type :

Public Private

Photo :

Tags :

(comma separated)

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

by shannonj on 07.22.08 - public

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

Title :

Description :

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.

Type :

Public Private

Photo :

Tags :

(comma separated)

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...

Title :

Description :

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 so hard for.  So here is my letter to Mr. Savage.  I don’t expect him to apologize or even feel any remorse.  I only write because I’m a parent, and this is what parents do.  We protect and we defend our own.

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

Type :

Public Private

Photo :

Tags :

(comma separated)

the good guy

by shannonj on 07.19.08 - private

My son cannot keep his hands off of me. It may be some kind of compulsion, I'm not sure, but his sticky hands are never far from my body. When I'm at...

Another Missing Teen

by shannonj on 07.18.08 - public

St. Paul Police Searching for Missing Teen with Autism

Created: Thursday, 17 Jul 2008, 7:36 AM CDT

St. Paul Police are seeking public help in lo...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Teenage Shopping Dilemmas

by shannonj on 07.15.08 - public

Old Navy had a sale today and I was hoping to find a few things that might tie my weed of a son over for the next few months. He is too tall for the b...

Title :

Description :

Old Navy had a sale today and I was hoping to find a few things that might tie my weed of a son over for the next few months. He is too tall for the boy's department and too skinny for the men's section and I find myself in a sort of department store no-man's land, wandering between childhood and adulthood, all daunted and dazed. For the first time, I understand why my mom sewed pieces from an abandoned calico curtain to the hem of my older brother's jeans back in 1970-something. It was hip, but it was also necessary, as my brother had the same long legs that challenged every rack in every store.

Somewhere between grabbing two pairs of flip-flops for my Haley, and returning to the rack the pink tank that I hoped would give me back ten years before I realized it never could, I came across a clearance rack in the middle of the store. I held up the khaki boy’s size 16 pants to my waist to see if they would still meet the floor. Wynn and I are the same height and, for now, I am his measuring stick. Tomorrow I will have to borrow someone else's son to compare length and width, but for now, I will do just fine. I checked the waist for the elastic and buttons that would promise to secure the pants just above his briefs, and tucked them, gratefully, under my arm. I grabbed another size 16, this time in faded denim with zippered pockets. Feeling lucky, I reached for a men's size medium shirt and was thrilled with the $3.99 price tag. Looking over my shoulder to make sure I am alone, I held it up for a better look.  It’s a popsicle-blue with a sprawling message of bloated letters in salamander green. I’m too out of touch with teenagers to know if it is stylish or embarrassing. I have no radar for middle-school cool.  If my 11 year old daughter were beside me, she would willingly, and maybe a little blantantly, share her very High School Musical meets Goodwill sale rack opinion....and I would trust her and move on.  Instead, I’m paralyzed in the process.

Maybe I care too much what Wynn looks like.  He certainly doesn’t care if he wears blue or red, collar or tank, solid or striped......It does have to be soft, though, and a picture or emblem on the front helps him to put it on right, but he is clueless about style, fashion, or even fit. But what if he did care?  What if he was right beside me, pawing through the racks--all full of oomph and opinion?  Easily, I imagined him, so handsome and brave, laughing at my suggestions, and rolling his eyes at each and every piece of clothing I sent his way.  “Mom!  I would never wear that..are you kidding me?”.....”Those pants look like Dad’s...jeez!”....
“Why do we have to look at only the sale rack? “.....”I can try them on by myself...can you please wait in the car?”.......

Chuckling to myself, I managed to make my final selections.  I plunked my bounty on the counter as I paid the cashier.  For only $48.56, my 13 year old son was wardrobe-ready for at least another two months.   Then, bulging bag in hand, I headed for the parking lot.  As I started the car, I looked at the imaginary figure seated beside me and said, “Now that wasn’t so bad, was it?”  Wynn shook the long bangs out of his face and with typical teenage thoughtfulness and wisdom replied, “Awww, Mom!”

Type :

Public Private

Photo :

Tags :

(comma separated)

Autismpodcast.org.....Rick Rollens

by shannonj on 07.14.08 - public

I encourage you to listen to the latest interview on www.autismpodcast.org.
Michael Boll interviews Rick Rollens....

Rick Rollens is a co-founder ...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

A Note of Thanks

by shannonj on 07.07.08 - public

Dear Library

My name is Shannon Johnson and as a local resident, I am a frequent patron. Often, I bring my son, Wynn, with me when I visit. He is...

Title :

Description :

Dear Library

My name is Shannon Johnson and as a local resident, I am a frequent patron.  Often, I bring my son, Wynn, with me when I visit.  He is 13, tall, handsome and has autism.  You may recognize him as the nervous boy who doesn't like to be spoken to and who worries when people look at him too long.  He gets plenty of attention anyway, because, despite his height, he still holds my hand and is usually carrying picture books and and Arthur DVDs.  We don't stay long, as his anxiety increases with time, and we are always grateful for short lines and efficient check out personnel.

I just wanted to write and say thank you for the wonderful service that you provide our community, and my family in particular.  We always feel welcome and valued, even when Wynn is loud or impatient.  Your staff have always been kind and respectful and we've never been turned away for inappropriate noise or actions.  You don't just shelve books about disabilities, special needs and autism, you demonstrate acceptance through your gentle words and thoughtful helpfulness.  Thank you for recognizing my son's value and for giving him the freedom to participate in such a wonderful community experience.

Sincerely-
Shannon Johnson

Type :

Public Private

Photo :

Tags :

(comma separated)

A Summer Break Away

by shannonj on 07.04.08 - public

My husband drove our 11 year old daughter, Haley, to Boston yesterday, to get on a plane and fly to GA. She's going to be spending 3 weeks with my fa...

Title :

Description :

My husband drove our 11 year old daughter, Haley, to Boston yesterday, to get on a plane and fly to GA.  She's going to be spending 3 weeks with my family--getting spoiled by a dear extended family....I miss her already.  But I'm glad she gets a well deserved vacation and some time away from her hyper and loud older brother.  She is kind, patient and willingly gets in line to be second place all the time in our home.  She understands why her brother's needs trump hers most of the time, why mom misses her spring concert and why dad can't always volunteer to drive on field trips.  She has waited patiently, responded gently to harshness, turned the other cheek, and very maturely looked the other way. She shouldn't have to be so big all the time, but that is her reality and she constantly makes me proud as she rises to every occasion.  Now for three weeks, she'll get to just be a kid....who sleeps late, eats too much ice cream, and gets to be first in line for a change.

Have a wonderful time Haley!  Mom and Dad think you deserve it.......

Type :

Public Private

Photo :

Tags :

(comma separated)

Autism Risk Management

by shannonj on 06.30.08 - public

Here is the description of our latest podcast on autismpodcast.org. We interviewed Dennis Debbaudt and learned so much about protecting our children ...

Title :

Description :

Type :

Public Private

Photo :

Tags :

(comma separated)

Share a Photo: Mealtime

by shannonj on 06.28.08 - public

This is during the phase when Wynn was about 7 years old and realized that he didn't have to wait to be fed if he was hungry. Notice the guilty look ...

Early Morning Meditation

by shannonj on 06.26.08 - public

This morning, mister Wynn was up at 5:45 am....and began the day fussing. "I don't want to take a shower! I don't want to wash my face!" No "Good m...

Title :

Description :

This morning, mister Wynn was up at 5:45 am....and began the day fussing.  "I don't want to take a shower!  I don't want to wash my face!"  No "Good morning, mom!"....Just zero to 100 before the birds were even awake.

"I've got him.  You go work outside."  my husband suggested.  He had noticed that the plants l bought last week for my new perennial garden were wilting in the sun.  He knew, too, that with the end of school, Wynn's big presence at home had limited my ability to do anything beyond the basics of cooking meals and washing clothes.  I guess he figured that without some intervention, the plants would soon be compost.

It took me just seconds to throw on some sweats and sprint to the backyard before anyone needed me.  The early air was cool and the mosquitoes hadn't yet been stirred.  
My toes caught the dew and the loose grass as I flip-flopped across the lawn, wheelbarrow and shovel in hand.

As I dug deep into the dark soil, reaching for rocks to discard, I inhaled long, slow and very intentionally, certain not to miss the musty, earthy fragrance that was mine alone.  The birds watched from high branches as the breeze danced with the  taupe umbrella on the deck.  Prayers seem to come easily in the quiet moments of the morning and I found myself humbled and grateful by the nature that surrounded me.

A perfect and lovely hour later, I was back inside the house, refreshed, renewed and ready to take on life--whatever that meant for this day.....

Type :

Public Private

Photo :

Tags :

(comma separated)

Colonoscopy....not for the faint of heart

by shannonj on 06.18.08 - public

This may seem a bit off-topic, but I thought I would share this Dave Barry column--especially for those families
like mine who have taken their kids ...

Title :

Description :

This may seem a bit off-topic, but I thought I would share this Dave Barry column--especially for those families
like mine who have taken their kids 
through  the lovely journey of colonoscopy.
Enjoy!

Dave Barry: A journey into my colon -- and yours

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, ``HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BUTT!''

I left Andy's office with some written instructions, and a prescription for a product called ''MoviPrep,'' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.

I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes -- and here I am being kind -- like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

Click link to read entire column
http://www.miamiherald.com/dave_barry/story/427603.html

Type :

Public Private

Photo :

Tags :

(comma separated)

Love and Junk food

by shannonj on 06.14.08 - public

"Do you love me? I want you to love me or I'll beat you up until you do love me." Wynn's going through a phase where he thinks violence is the solut...

Title :

Description :

"Do you love me?  I want you to love me or I'll beat you up until you do love me."  Wynn's going through a phase where he thinks violence is the solution to all of life's dilemmas.  Like a fist to the face will result in bigger portions, later bedtimes, more movie sequels and, well, world peace.....I often wonder how many times I will utter phrases like, "Use nice words." or "Hitting only gets you in trouble." or " You really think that school will end faster if you give the bus driver a bloody nose?".  Then I recall when my husband and I actually factored out the number of times each day that we had to remind Wynn to go to the bathroom and multiplied that by the number of days it took for him to be independently potty-trained and arrived at a sum with more digits in it than our retirement fund.  I sigh out loud, and know that this too will pass, and I chalk up another tally mark as I attempt to keep score.

"I do love you, Wynn.  I already do."  I assure.  "You'll never have to make me love you.  As a matter of fact, I couldn't 
not love you even if I tried."

"Really?" he queries.  "How do you know?"   Wynn's a genius at asking questions that don't really have answers, definitions that are unknown to Webster, and un-google-able keyword searches.

"How do I know that I love you?"  I ask.  Hmmm.  What can I say, I wonder, that won't get me trapped in some semantical debate that will inevitably end with me writhing around in more nonsensical rhetoric before I wisely put my steamy, red-faced and pouty self into time-out?  But before I can stop myself from speaking, I find that words are exiting the building through the automatic electric door that is my mouth.  Someone has their foot on the sensor and I can't make it shut.  Note to self:  use the fire escape next time.

"Because every time a mommy gives birth to a baby, God puts more love in their heart."  I pause to ask myself if I care to reference sources and then uncontrollably continue.  "When you were born, my heart grew bigger with the new love that is only there for you.  And if I didn't love you, my heart would stop beating because it is your love that keeps my heart alive."

"Hush, hush!"  (That is me talking to my mouth).  "How do you think you are going to get out of this one?  Just wait until he jumps on the part about your heart stopping its beating.  You think he doesn't worry enough about you leaving him already?  How much anxiety is it going to bring him to know that he is responsible for your cardiac health?"

Somehow, in a panic, I am able to grit my teeth tight enough to prevent anything more than a low groan from leaving my mouth.  That posture is also partly due to the fact that I am bracing the steering wheel with a white-knuckled grip in anticipation of a sudden blow to my shoulder as Wynn proceeds to process my words in a sort of pseudo-kinesthetic way.

However, seconds pass without impact or contact of any sort and I relax enough to spy Wynn's reflection in the rear-view mirror pointing at the McDonald's situated on the corner by the light.

"When are you going to let me have junk food again?"  he asks.  "I'm going to beat you up if you don't let me have junk food soon.".......

Ah, love and war, life and death, heartbeats and french fries......all safe and buckled in a seatbelt at 55 miles per hour.

Type :

Public Private

Photo :

Tags :

(comma separated)

A Chilly Day at the Beach

Favorite Compositions (6)

shannonj's Compositions