Follow the Money

Glaxo will buy Novartis' vaccines, less flu, for $5.25 billion. That's a pretty small portfolio (rabies, meningococcal, Japanese encephalitis), which just shows the vax biz is a "backwater" no more. -- Sebelius out, Burwell in. With the latter's Gates Foundation...

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MomsFightingAutism.com Online Autism Conference April 26th & 27th

It's free

The Focus is on the Transition to Adulthood – Teens Need to be Better Prepared

Register FREE Here!

Irvine, CA: Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood.  Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, who will speak on “Building a Support Community for Interdependence and Growth;” Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance – Taking the next step on your Employment Journey”, and Marguerite Cohn, Transitions Program Supervisor of the Rebecca School in New York.

"The transition to adult life can be a rude awakening for parents as well as the young adult," said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. "The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know."

Continue reading "MomsFightingAutism.com Online Autism Conference April 26th & 27th" »

Gravity Wins: Journal Entries of Autism & the Heartache of Residential Placement

Inas
Admittance Day

By:  Inas Younis

Its takes strength to hold on, but it takes even more strength to let go.  But I am a mother and I could only do what came naturally,  and so I held on.    I held on as tight as I could without hurting him.      I held him when he tried to jump out of moving cars.  I held him when  he tried to attack the neighbors.  I held him when he tried run out into streets.   I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go.  Whoever said mothers are strong,  did not really understand the meaning of strength. 

But now the time has come.   Blinded by tears,  and  deafened by an  inner voice which keeps reminding me that mothers never give up on their children, I am going to let go.  But before I do,  I must throw myself  before a jury of my peers and ask for their forgiveness.   I know what you are thinking,  only God can forgive me.   But I don’t need forgiveness from God,  for he has been on and by my side since day one.  He was there while I screamed and cursed at the heavens for making my son autistic and epileptic.   He was there when I begged  for a miracle every day for ten years straight.  He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure.  He was there when I had my first panic attack.  He was there then, and he is here now.  I don’t need his forgiveness, for there is no sin in coping.   And I do not need forgiveness from my fellow man,  who was completely oblivious during  the beatings,  the fecal smearing,  the screaming,  the property destruction,  the insanity and horrors of my life which I hid from their  innocent eyes and ignorant hearts.    No,  what  I need  in order to let go,  is forgiveness from a jury of my peers. A jury of mothers who have  suffered some measure of the horrors I have for the last sixteen years.  For only  they can understand,  and not because they have been through it,  but because many of them  are still going through it.  They are my heroes, and after you hear my story, they will be your heroes too. 

So please allow me to plead my case ,  starting with the most obvious defense.   I tried everything!  

Was I aggressive enough with his therapy, his special diets,  his medications, you ask?  Well let me see if I can remember, because as most of us mothers with special needs children know,  we all suffer from  a bit of amnesia.  It’s  our brain’s way of dealing with trauma.  I think there is an acronym for it called  PTSD.  The world of autism is full of acronyms.  There is GFCF, SCD,  ABA,  ASD,  IDEA,  ESY,  and my all time  favorite,  WTF.   But luckily,   I kept very detailed journals, so no worries.    Of course at the time,   I kept them because I was trying to decode the mystery of  autism and in my case severe autism.  I micromanaged his every bite of food, supplements, medications, and  therapy in an effort to isolate cause and effect and determine  patterns of  behavior.  But no patterns emerged except for one;  I was going crazy.   I submit to the jury the following Journal entries. 

October 2003:   I am in autism hell,  which right now means hiding out in my bathroom while the devil has his way with my son.   According to my notes  the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil.   Therefore,  no more orange flavored fish oil.  Note to self: use alternate fish oil.  To do list: email the following fish oil companies until I find the purest fish oil known to man. 

Continue reading "Gravity Wins: Journal Entries of Autism & the Heartache of Residential Placement" »

Assurance of Things Hoped for, Evidence of Things Not Seen

Sword in the stone
By Brooke Potthast

It has been almost one year since our son James had the opportunity to use the RPM method of communication with Soma Mukhopadhyay.  James is verbal but not conversational, and his speech is best described as being very “unreliable” as well as hard to understand. James has gone from almost no real communication to total communication in 6 months.

Needless to say it has changed everything for him and for us. I tell people it is bigger than marriage, childbirth or winning the lottery. It seems as though every day we learn something really big about James and his heart and mind.

When I first realized that a lot of what we thought about James was wrong, I called Dan Olmsted. Over coffee I told him, “I think mercury toxicity creates silent geniuses.” I’ve always been certain that thimerosal and my dental amalgams caused James’ regressive autism and I am now fairly certain that a huge percentage of children or young adults with autism are not intellectually disabled, not even learning disabled, but so severely sensory-motor disabled they can’t show us.

We thought James, who is 14, was around 2nd grade in his academic understanding and that was spotty. When we decided to homeschool and let him use the letter board fo spelling answers, he was able to do 9th grade work in just a few months. We thought he couldn’t add and he easily does algebra and recently asked to learn about cube roots.  I am not writing this out of pride for our son. I am telling you this because I don’t think he is the exception, I think he is the rule. In the last year I have seen this over and over again in teens and children who are in life skills classes and who educators and doctors have said are cognitively disabled. When given the opportunity to use RPM or something like it they show us that they have not just been taking it all in, but assimilating it in a typical and functional manner. One day early on our homeschool teachers gave James a vocabulary test. They gave the word “gullible” he spelled “easily fooled." Those examples are endless.

But the most remarkable thing we have learned about James and what I wanted to share in this piece is that despite having suffered in ways unimaginable he (and I think so many of his peers) has great hope for the world and for forgiveness and understanding. It is hard to even put into words what life would be like trapped in your body. Thinking and understanding just like everyone else but not being able to join in a conversation, tell a joke, verbally express love or anger or sadness. To not have friends, have education be limited; the list is long and painful.

But here is a “legend” written by James this week. When I read it my first thought was to put it on Age of Autism because I thought it summarized so much of what this community experiences and it gives us some hope. James said in another conversation that he remains hopeful and I’d like to think we all can. The background is that he is doing Medieval literature in school right now and they have read Beowulf, Sword in the Stone, etc. After discussing (on the letter board) the Sword in the Stone he was given this assignment: (his writing is in Caps)

Why was it so hard for people to believe that Arthur pulled the sword from the stone?

BECAUSE PEOPLE CANNOT BELIEVE THINGS THAT THEY DONT UNDERSTAND.

Continue reading "Assurance of Things Hoped for, Evidence of Things Not Seen" »

Boy with Autism Lets Us Into His World Via Writing

Speak outI received this letter - school paper - from a long time reader of AofA, and asked instantly if I could please share it with you our readers.  This young man uses the Rapid Prompting Method to communicate. And just listen to his thoughts.....   Rapid Prompting Method RPM empowers the learner a way to express his learning, understanding, reasoning and thoughts.

8-29-13       Narrative – High School Experience – Journal Exercise 1.8

Sam couldn’t do RPM.  He was not placing the choices in the right place.  I couldn’t touch what I wanted.  He placed the choices too far away from me.  A giant desk was between us.  I had to stretch my arm and it bothered me.  It made me tired.  My arm felt like lead. Sam also couldn’t speak.  He stuttered. 

I couldn’t show I was learning anything from Sam.  I can’t talk all the words I think and I can’t write.  I understand everything read or said to me.  It’s ironic.  I can’t talk and yet I am critical of Sam's stuttering.

All I could think about was how to hurt him.  I came up with a plan, or I had a plan, to hit him whenever I had a chance.  They had a bolster blocking me from attacking.

I sat in a lousy hard chair.  I was mad because no one knew I was smart. Stinky rotten teachers, Sam was a big black inept jerk.  The classroom had cold cinder block walls, yucky zoo classroom.  I felt I might as well be in prison.

Ellie gave a workshop on RPM.  She was wonderful.  I was sad to see her go.  She was patient and skilled.  She made me feel competent and successful.  The other teachers were patronizing.  They laughed at her as she spoke and taught.  I felt humiliated.  I just kept looking down and avoiding eye contact.

Continue reading "Boy with Autism Lets Us Into His World Via Writing" »

cloudBoard Gaming System Marries Hands-On Board and Video Games

Cloudboard-homepage
We often receive emails from companies offering products that might be of interest to the autism community. This hands-on gaming platform from Digital Dream Labs piqued our curiosity and so, we are sharing it with you.   Some of our kids might go to work for companies like Digital Dream Labs one day. As programmers -  or maybe for some of our kids, as the nice guy or gal or helps tidy up at night. Let us know what you think in the comments. And check out their KickStarter fundraising page too.

cloudBoard is a new gaming system that brings together the play patterns of real-world toys, like Lego and Lincoln Logs, and modern videogames, such as Angry Birds or Super Mario Bros. This connection of real and digital play is achieved by using toy puzzle blocks to play videogames.

Anonymous Donor to Match Your Gift to Age of Autism

Money-kid
EXCITING OPPORTUNITY this Thanksgiving to show your thanks and appreciation for how the "Age of Autism" blog has helped, educated, and encouraged you and countless others! 
 
DONATE BY MIDNIGHT ON THANKSGIVING DAY (11-28-13), and your donation will be DOUBLED!! *(Donations will be matched up to $3,000.)

Dear Fellow Age of Autism Readers,

After reading Dan Olmsted's Age of Autism anniversary article on Saturday, I felt moved to do something to make sure that this excellent daily blog continues…until the actual "age of autism" comes to an end and this tragic chapter in human history is finally put to rest.
 
To that end, I will match incoming donations to AoA through midnight on 11-28-13, up to the amount of $3,000. That means that Age of Autism could receive $6,000 in just a little over a week…hopefully more if everybody who is able makes a donation of thanksgiving and appreciation!
 
Your $20 becomes $40! Your $50 becomes $100! Your $250 becomes $500!  

All you need to do is click on the "Donate" button in the top-right corner of AoA, which takes you Donate_thanks directly to PayPal, and make your donation today!  If you prefer to send a check, send an email to [email protected] for the mailing address.

Don't put it off until tomorrow.  Bite the bullet and do it now!  Let's shoot for the stars and raise more than $6,000, and keep AoA going strong!
 
Sincerely,
 

A Thankful and Appreciative Age of Autism Reader

There’s Always a Light at the End of Each Tunnel

Darkness_to_light_1600x1200By Zack Peter

I think we can all agree, the road to recovery isn’t an easy one. You don’t just pick up a book, try out one treatment approach, and wham RECOVERY! Things just aren’t that easy. Sure it may suck, but that’s just life. It’s a journey. And milestones aren’t handed, they’re earned.

When it comes to my family, and my brother Ethan (who was diagnosed about eight years ago), it’s the same thing. We’re in the same boat. We’re living out our own journey, that has also come with it’s highs and lows. But today, I’m proud to share that we’ve reached some progress. My trust in the “All roads lead to Rome” rule is slowly starting to paying off.

Just the other day I was out with Mom and Ethan for our weekly Thursday night dinner when Mom told me, “So everyone’s slowly starting to get on board with GFCF diet.”

Flabbergasted, I turned her and said, “Wha-a-at?” I could not believe it. I remember our very first attempt at the diet. My grandparents were against it. Flat out just unsupportive of it. Just a couple of months ago I tired again getting through to my grandfather the importance of diet intervention with autism. It didn’t seem to be that important. They saw “diet” as “restriction.” They didn’t believe Ethan should be restricted in any way. This is an on going struggle that’s been happening for YEARS. So to hear these words coming out of my mother’s mouth were so heavenly. It may seem so minor to have a couple of other family members on board, but to us, that’s huge! These are family members that had gluten with extra gluten and a side of gluten in their house. And when Ethan would come over after school, if he happened to grab a slice of cheese or some cookies, they would turn the other cheek. Or simply claim to not know what foods had gluten or dairy. Or would argue with my mother that the diet had no effect whatsoever; that it was pointless. So hearing that they’re now coming around was so gratifying and the best news I could have received right now.

Continue reading "There’s Always a Light at the End of Each Tunnel " »

Another Winner! Finding Lina A Mother's Journey from Autism to Hope from Skyhorse Publishing

Finding Lina 9781620875957Congrats Maria Bucchino, our 3rd winner. I've sent you a a second email from KRStagliano.  We have four books to give away and will have another winner tomorrow and Friday. You can leave a comment on this post to enter!

 Finding Lina A Mother's Journey from Autism to Hope, is a memoir that AofA readers will relate to from the opening pages to the loving and upbeat afterword.   It's a story of challenges, seeking answers, how a family copes and evolves (not always in a fairytale fashion) and most of all - love. 

Lina's Dad is Skyhorse Publisher Tony Lyons. This is important for a few reasons. His life and love for Lina spurred him to create a home for autism books within the Skyhorse Parenting category  that might otherwise never see the light of day from traditional publishing.  That's so important to our community.   Books like Callous Disregard from Dr. Andrew Wakefield, Cutting Edge Therapies for Autism by Ken Siri and Tony Lyons and All I Can Handle I'm No Mother Teresa by Kim Stagliano.

Lina was a precocious toddler—charming, chatty, joyful. At the age of three, in the aftermath of her second MMR vaccine, first came a seizure, and then, to her parents’ horror, the loss of Lina’s ability to play, use language, and control her impulses. Over the next few years they continued to lose Lina. She communicated her acute discomfort by biting, screaming, hitting, laughing maniacally, and throwing violent tantrums. As a single mother, with the help of her ex-husband, Helena Hjalmarsson tirelessly pursued every possible avenue to find a diagnosis, and more importantly a treatment, for her daughter, and the search continues to this day. Lina is nine.

Continue reading "Another Winner! Finding Lina A Mother's Journey from Autism to Hope from Skyhorse Publishing" »

Second Winner! Finding Lina from Skyhorse Publishing

Finding Lina 9781620875957Congrats GAYLE our 2nd winner. I've sent you an email from KRStagliano.  We have four books to give away and will have another winner tomorrow and Friday. You can leave a comment on this post to enter!

 Finding Lina A Mother's Journey from Autism to Hope, is a memoir that AofA readers will relate to from the opening pages to the loving and upbeat afterword.   It's a story of challenges, seeking answers, how a family copes and evolves (not always in a fairytale fashion) and most of all - love. 

Lina's Dad is Skyhorse Publisher Tony Lyons. This is important for a few reasons. His life and love for Lina spurred him to create a home for autism books within the Skyhorse Parenting category  that might otherwise never see the light of day from traditional publishing.  That's so important to our community.   Books like Callous Disregard from Dr. Andrew Wakefield, Cutting Edge Therapies for Autism by Ken Siri and Tony Lyons and All I Can Handle I'm No Mother Teresa by Kim Stagliano.

Lina was a precocious toddler—charming, chatty, joyful. At the age of three, in the aftermath of her second MMR vaccine, first came a seizure, and then, to her parents’ horror, the loss of Lina’s ability to play, use language, and control her impulses. Over the next few years they continued to lose Lina. She communicated her acute discomfort by biting, screaming, hitting, laughing maniacally, and throwing violent tantrums. As a single mother, with the help of her ex-husband, Helena Hjalmarsson tirelessly pursued every possible avenue to find a diagnosis, and more importantly a treatment, for her daughter, and the search continues to this day. Lina is nine.

Continue reading "Second Winner! Finding Lina from Skyhorse Publishing" »

Winner! Finding Lina A Mother's Journey from Autism to Hope: By Helena Hjalmarsson

Finding Lina 9781620875957Congrats Lisa Kelly -  our first winner. We have four books to give away and will have another winner tomorrow, Wed and Thursday. You can leave a comment on this post to enter!

 Finding Lina A Mother's Journey from Autism to Hope, is a memoir that AofA readers will relate to from the opening pages to the loving and upbeat afterword.   It's a story of challenges, seeking answers, how a family copes and evolves (not always in a fairytale fashion) and most of all - love. 

Lina's Dad is Skyhorse Publisher Tony Lyons. This is important for a few reasons. His life and love for Lina spurred him to create a home for autism books within the Skyhorse Parenting category  that might otherwise never see the light of day from traditional publishing.  That's so important to our community.   Books like Callous Disregard from Dr. Andrew Wakefield, Cutting Edge Therapies for Autism by Ken Siri and Tony Lyons and All I Can Handle I'm No Mother Teresa by Kim Stagliano.

Lina was a precocious toddler—charming, chatty, joyful. At the age of three, in the aftermath of her second MMR vaccine, first came a seizure, and then, to her parents’ horror, the loss of Lina’s ability to play, use language, and control her impulses. Over the next few years they continued to lose Lina. She communicated her acute discomfort by biting, screaming, hitting, laughing maniacally, and throwing violent tantrums. As a single mother, with the help of her ex-husband, Helena Hjalmarsson tirelessly pursued every possible avenue to find a diagnosis, and more importantly a treatment, for her daughter, and the search continues to this day. Lina is nine.

Continue reading "Winner! Finding Lina A Mother's Journey from Autism to Hope: By Helena Hjalmarsson" »

Cheering for Autism Recovery! Give Me an A! Give Me an R! Give Me an I!

Friends, grab a pom pom to wipe your eyes when you read this wonderful story of autism recovery success, and pride. Keely's Mom is Kendra Pettengill, a long time autism advocate who credits ARI along with school staff and good friends with Keely's outstanding success.  But it's Keely herself whose words ring truest, "Impressive!"   Congratulations to the family. Keep the hope!



GLIDE, Ore. -- Last week, the Glide Wildcats had their first home game of the season. At that game, there was one cheerleader who was cheering for a lot more than football.


Kendra Pettengill's daughter Keely is on the cheer leading team, but there was a time when she wasn't sure it was best for her daughter. "I was thinking this was the last thing she needs, is to be on a cheer squad," Kendra said.

But, Keely made the varsity cheer squad for her sophomore year.

She's not like most cheerleaders: she's autistic.

Shelby Mehlhoff, a Glide senior, talked about Keely's work ethic. "She comes out and gives it her all everyday," she said.

Sidney Fucciolo, a junior, agrees. "She's came a long way. You can tell she's matured and growing into a woman and getting out of that girl stage," she said.

Continue reading "Cheering for Autism Recovery! Give Me an A! Give Me an R! Give Me an I!" »

AIM Academy Presents Adult Autism Living Weekend for Investors, Stakeholders

AustinManaging Editor's Note: We realize our readers will not be able to attend this event as a rule. However, as our kids age and we start planning for their futures, I can promise you that the Austin Texas model below should be required reading for all.  Thank you to our Contributing Editor Dan Burns, himself father to an adult son with autism, for his tireless work in the brave new frontier - aptly leading the way in Texas.


Overview and purpose

Appleseed Ventures and AIM Academy are hosting a get-together in Bastrop, near Austin Texas, on the weekend of Sept. 20-22 for autism families, real estate developers, and financiers, and autism advocates. The purpose is to cultivate a network of resources for parents who seek to create living, working, playing, and healing communities for their adult children on the ASD (autism) spectrum, and to exchange ideas for a pilot community of ASD adults that is self-originating and self-sustaining.

Agenda and Program

The get-together will run from 5:00 PM Friday, September 20 through until 12:00 noon Sunday, September 22. We’ll gather Friday at 5:00 PM around the pool at Quality Inn in Bastrop, caravan to the historic district, take a walking tour of this Victorian frontier city, and reconnoiter for hand-crafted ale at the Bastrop Brewhouse. Dinner is at the Brewhouse Restaurant, at Anita’s, or at your choice of one of the dozen top-ranked restaurants in old downtown Bastrop.

Saturday morning at 8:00 we’ll convoy to McKinney Roughs Nature Preserve for a hike through Lost Pine trails famous for scenic views of the Colorado River.

At 10:00 on Saturday we’ll settle in for the centerpiece of the weekend: our Bridge to the Future Roundtable hosted by AIM Academy and Appleseed Ventures. This is an open, audience-participation event. If you can’t come to anything else, come to this! Our featured guest presenters, Diane Belnavis (Juniper Hill Farms) and Cathy Boyle (Autism Housing Pathways), whose work has been featured in Age of Autism, are journeying from Pennsylvania and Boston to share their experiences/successes in housing and employment for our adult children. Diane, Cathy, and other presenters will help develop templates for creating similar success stories in Texas and beyond.

After lunch on Saturday we’ll open our Think Tank: opportunities for discussion and networking in comfortable air-conditioned surroundings at the Special Events Science Center McKinney Roughs Nature Preserve. Bring your ideas and questions for transition, housing, and jobs! Bastrop 3

At 3:00 PM we'll have tubing outfitted courtesy of the Bastrop River Company. Bring swimsuits.  Tubes and lifejackets provided free.

Join us at 6:00 PM for Saturday night dinner at the Bastrop Brewhouse Restaurant, overlooking a scenic bend in the Colorado River and featuring live music and local cuisine. Bring your own instrument or purchase an inexpensive kazoo from LarryLand Music next door and join “Pickin’ on the Porch” (anybody can play) at the Brewhouse for a good time.

Sunday? An optional tour of possible properties in Travis, Bastrop, and Lee counties for establishing a safe, supportive community for our adult children with autism.

Continue reading "AIM Academy Presents Adult Autism Living Weekend for Investors, Stakeholders" »

Join Jacqueline & Chris Laurita at the National Autism Association VaConference

Nac banner

Summer has ended and it's time to launch into Fall (insert HUGE cheer here.)  That means it's time to start planning your vaconference with National Autism Association. If vaconference isn't a word, it should be, because that's what NAA has created for attendees.

Held each November at the family owned Trade Winds Resort in St. Pete Beach, Florida, the NAC is the perfect mix of beach vacation for you and your child(ren) and chock a block informative autism conference.   The cost is only $150 and scholarships are available.

Learn more and register HERE.


Join us in beautiful St. Pete Beach for this family-friendly event featuring the country's leading experts on Autism Spectrum Disorders.

NAC cabana chairs

TradeWinds Island Resorts are two resorts, just steps away from one another on the white sands of St. Pete Beach, overlooking the Gulf of Mexico. With 14 dining and entertainment options, 7 pools, full service salon and spa, activities center for the kids and more, TradeWinds is the perfect location for a relaxing and fun getaway.


In November of 2010, TradeWinds Island Resorts was designated an Autism Friendly business by the Center for Autism and Related Disabilities (C.A.R.D.). TradeWinds employees underwent C.A.R.D.’s training program, which taught employees how to better meet the needs of guests who have autism and their families. Employees who have been through the training are easily identified by the puzzle piece pin on their nametags.

At TradeWinds, you can rest assured that they will take all your needs into consideration so you can “just let go”.

During your visit you can request a “Safety Kit” available for your room, which includes a hanging door alarm, corner cushions for tables and outlet covers.

For those with special diets, they have gluten free offerings available in our dining outlets. As a special treat they also have our Snack Attack amenity available, which includes a TradeWinds lunch bag and gluten free snacks.

For children, the KONK (Kids Only No Kidding) has special sensory activities available as well as selected drop-off programs for kids. Please call KONK at 727-363-2294 in advance to speak with a counselor about your child’s needs and so they can staff appropriately.

Call 800-808-9834 today to speak to one of their friendly reservation agents about how they can best accommodate you and your family during your stay.

Review and print the TradeWinds Social Stories Book to fully anticipate the resort’s offerings before your visit.

Contest! Finding Lina by Helena Hjalmarsson: A Mother's Journey from Autism to Hope

Finding Lina 9781620875957We have a new book from Skyhorse Publishing for our readers. Leave a comment to enter the contest.

Called, Finding Lina A Mother's Journey from Autism to Hope, the book is a memoir that AofA readers will relate to from the opening pages to the loving and upbeat afterword.   It's a story of challenges, seeking answers, how a family copes and evolves (not always in a fairytale fashion) and most of all - love. 

Lina's Dad is Skyhorse Publisher Tony Lyons. This is important for a few reasons. His life and love for Lina spurred him to create a home for autism books within the Skyhorse Parenting category  that might otherwise never see the light of day from traditional publishing.  That's so important to our community.   Books like Callous Disregard from Dr. Andrew Wakefield, Cutting Edge Therapies for Autism by Ken Siri and Tony Lyons and All I Can Handle I'm No Mother Teresa by Kim Stagliano.

Lina was a precocious toddler—charming, chatty, joyful. At the age of three, in the aftermath of her second MMR vaccine, first came a seizure, and then, to her parents’ horror, the loss of Lina’s ability to play, use language, and control her impulses. Over the next few years they continued to lose Lina. She communicated her acute discomfort by biting, screaming, hitting, laughing maniacally, and throwing violent tantrums. As a single mother, with the help of her ex-husband, Helena Hjalmarsson tirelessly pursued every possible avenue to find a diagnosis, and more importantly a treatment, for her daughter, and the search continues to this day. Lina is nine.

Special schools, restrictive diets, sensory stimulation, relationship-based therapy, gastrointestinal links, homeopathy, and allergy treatment are all explored in detail. Hjalmarsson finds out what helps Lina and what doesn’t. She introduces sign language to Lina. She engages in lengthy daily intensive one-on-one sessions. With the help of her ex, angelic babysitters, Lina’s exceptionally empathetic younger sister, and supportive friends, Hjalmarsson manages to create a meaningful life for Lina, and for herself—a life of love and transcendence.

Lina, for all her challenges, has much to teach, and Hjalmarsson is a receptive student: finding joy in moments of connection, learning to live in the present, taking nothing for granted, accepting what others find unbearable, and finding a strength and spiritual base for inspiration and healing.

Unflinchingly honest and courageous, Finding Lina will open the eyes and hearts and minds of all parents, whether they have a child with autism or not.

Please leave a comment to enter the contest to win a copy.

Support Aof A and James Frye - Artist with Autism

James FryeIn 2011 we introduced readers to James Frye, then a 16 year old artist.

Imagine our pleasure when  we learned that James and his family wanted to donate part of the proceeds from the sale of  original ceramic art to Age of Autism as a way of thanking us for pur continued work on behalf of the autism community. My girls have an original James Frye work of art in their bedroom. I admire it every time I walk into their room - and am reminded that all of our children have talents and marketable skills to celebrate.

From the artist:  James Frye is  a 19 year old with autism from Spokane, Washington. He finds working with ceramics relaxing and soothing and has made this ceramic tennis shoe in support of The Autism Trust and Age of Autism.

You can purchase his art at Autism Trust USA.

Frye art
Pieces available for sale to support AofA.


James Frye pottery
The artist at work.

 


Trust

Trust_meterBy Sarah Stockwell

Our son has come a long way since his diagnosis at the age of 2. He has soared. He points, he shares, he is hyper-social, which is not something people usually consider to be a trait of a child on the autism spectrum. He loves to play – with anyone. Perhaps this is a result of him being an only child, I’m not sure.

We have spent a lot of time working towards that lovely term of ‘generalization of skills’ or, for the lay person ‘do something for anyone that asks rather than only performing for a select few.  And do it anywhere, not just in therapy’. We’ve had a revolving door of therapists, 12 ABA tutors in one year alone at one time (unintentional). And he does. He transitions from person to person without much of a problem at all. He isn’t fazed if his teacher is out sick or if he has a substitute speech pathologist, and this is a good thing. It seems there is a lot of turnover in these areas.  With him moving up a grade after finishing up his year of kindergarten, it’s good that he won’t be thrown off by a new teacher, teaching methods aside. As a military family, it’s also a good thing since he’s lived in 3 states and is on his 4th school setting!

My husband took our son fishing recently to a local military recreation area and came home reporting that they’d had a great time (and Tom caught his first fish!).  But my husband notices the differences between Tom and other children his age. He notices that Tom has no sense of reserve, enthusiastically making friends everywhere.  He even invites random children he meets at Target to our house for playdates (no, we don’t agree….!).

As a parent of a speech-delayed child who did not notice people, nor respond to his name at all when he was diagnosed, I am thrilled with how outgoing and social he is. I swelled with pride when someone who works at our local home improvement store called him ‘cute and precocious’ a few weeks ago.  We’ve really achieved that goal of having Tom engage with people and enjoy company. He has excellent co-operative play skills. He seeks out joint attention. The problem is that he has absolutely no concept of mistrust.

Continue reading "Trust" »

Zoccoli Presidential Traverse Autism Fundraiser Results

Prezi Traverse

In May we told you about a  long time supporter, Nick Zoccoli, whose nephew is on the spectrum. Nick decided to dedicate a serious mountain climbing hike called "The Presidential Traverse" (named after the mountains in the White Mountains range in New Hampshire) to his nephew, while raising funds for AofA.   We know that money is always as tight as your pants after Thanksgiving dinner in the autism community. Creating a mini-event whereby friends and family can donate on behalf of your child is a great way to show your support.  

Here's a follow up on the event from Nick.  You can still donate - use PayPal (donate button is on our right sidebar) or email [email protected] for a mailing address. Thanks to Nick and his boys!

Hello All - just wanted to followup with a final email to let you know of our results (both physically and monetarily) in hiking the Presi-Traverse and raising money to support the Age of Autism.  We started out with a group of 9 hikers leaving at 5:15 in the morning beginning at the Appalachia Trailhead.  The "trails" we encountered were more akin to rock climbing for about 80% of the 24-mile hike. By the afternoon at 1:23 p.m. we had reached the peak of Mt. Washington having climbed to 6,288 elevation.  At this point having hiked approx. 15 miles in and 4 mountain peaks (see the enclosed pdf), our group reduced down to 6 hikers as my son Jonathan was experiencing severe foot pain and his brother Nick took him off the mountain at this point and the remaining group moved on (as well as 1 other had left at the 4 mile mark).

I and the other 5 of our remaining group continued on and successfully completed the entire 24-mile and 7 mountain peaks at 7:45 p.m. This was one of the most challenging high-end adventures that myself  and my boys have ever embarked on, given the rough terrain and elevation climbs.  Approximately only 150 people annually complete this trek in one day.

I want to sincerely thank everyone for their support and generosity in donating to this very special cause. With a few late donations still coming in this week, we raised a total of $3,722.  That is AWESOME!!!

Sam Wessels "Uses Charm to Sway Lawmakers" Featured on KTIV

Sam WYou've met Sam Wessels here at AofA and elsewhere. He and his Mom Lin advocate for families facing the challenges of autism. Check out this great  article and video from Sioux City, Iowa.

ROCK RAPIDS, Iowa (KTIV) -
Sam Wessels is a typical 11-year-old boy.  He likes video games and having fun. But what you might not realize is that he has autism.

"It's basically a diagnosis that makes it hard for people to communicate and do everyday things," said Sam.

Even though Sam can do most things on his own now, that wasn't always the case.  When Sam was two, he stopped talking and progressing.  That's when doctors diagnosed him with the disorder.

"Honestly, it was terrifying," says Lin Wessels, Sam's mom.  "That hurt a lot.  Fear I think that was the biggest thing.  What will become of my child?"

Lin, turned her fear of the unknowns of autism into activities.  With her son by her side, every chance she got, she'd talk to politicians and ask them how they are helping people with autism. 
"'What are you doing?  Why aren't you doing more? What can you do?  Because people out here are suffering.  Some people with autism suffer and at that time our family was suffering," said Lin. Read the full story at KTIV.


KTIV News 4 Sioux City IA: News, Weather and Sports

Out of the Mouths of Babes: "Autism is a Sickness Where Your Tummy Hurts and You Can't Talk"

Cody and Harrison swingingBy Cody Jordan

This conversation started from Harrison noticing me wearing a new pair of flip-flops (the ones from Healthy Souls  that benefits Generation Rescue).  They were the first flip-flops I’ve ever had, but for the first pair, it was like it was meant to happen.

Harrison saw me wearing them (my sandals) and said, “Dad, you have new shoes!” 

This started a conversation which was one of the biggest turning points in his recovery: identifying with autism for the first time.  I pointed to the “a” in the puzzle piece (on the sandal) and asked, “Do you know what this is?” 

Harrison replied, “It’s a puzzle piece.” 

I asked, “Do you know what the “a” means?” 

Harrison looked at me and replied, “Autism.” 

I had never heard him say ‘autism’ before, so I asked, “Do you know what autism is?” 

Harrison replied, “It’s a sickness.” 

I asked another question, “What kind of sickness?” 

Harrison pointed to his stomach and head saying, “Where your tummy hurts and you can’t talk.” 

I was in a state of amazed shock at this point and wanted to keep it going, so I said, “But you can talk now, and you’ve said for awhile that your tummy doesn’t hurt anymore.” 

Harrison looked up at me, “Yes, I’m getting much better now.” 

I asked him, “How did you get better?” and he answered, “Dr. Usman, Dr. Krigsman, and Dr. Michele (his primary care), are all taking away my autism.” 

I could barely squeak out, “Do you remember what it was like when you couldn’t talk?” 

Harrison answered, “Yes, it was the sickness, but now I’m much better.  Can I watch YouTube now please?” 

Continue reading "Out of the Mouths of Babes: "Autism is a Sickness Where Your Tummy Hurts and You Can't Talk"" »

Autism Behind Bars: Johnnie B. Goode

Compassion_Will_Cure___by_kodereaperBy Dan E. Burns

Johnnie,

I opened the prison ministry box, first time, and found my name on your file. I expected maybe a murderer or a drug dealer, not a transgendered Christian minister re-incarcerated for possession of a firearm. Anyway, you’ve been assigned to me, your volunteer pen pal.

I know that there are many ways to be a prisoner. I have a 25-year-old son, Ben, severely autistic. My experience as a single father and caregiver opened my heart to the pain of the least, the lost, and the lonely. I’ve learned that some of the “least” have what the world needs most: the gift, as Jean Vanier says, of leading us gently into the depths of our own hearts, there to find patience, acceptance, and love. After reading the letters in your file, I believe you have that gift.

There’s another connection, too. Last summer I helped found and facilitate AIM Ranch, a residential campus for young adults with autism. One of the campers, a 21-year-old nicknamed Zero, told me that he’d been in every mental hospital, juvenile detention facility, and group home in the vicinity of Dexter, Missouri. Zero’s dad, a professor of agronomy and plant pathology, wanted him to be a missionary, but that didn’t work out so well. In fact, with one important exception, almost everything Zero tried -- to get a driver’s license, sustain a friendship, get and hold a job – didn’t work out so well for him.

My first night on duty at AIM Ranch, I was working on my computer in the common area when Zero passed through on the way to the kitchen, dressed for bed.

“I’m gonna kill myself tonight,” he said. “Yep, tonight’s the night.”

“How are you going to do that, Zero? Rope, knife, gun, pills?”

“I’m gonna slow down my hawt until it stops.”

I could have called Shoal Creek and had him taken to the state hospital, but I’d seen the term astral projection in his email headers, and I had my doubts. “So you’re gonna stop your heart, leave your body, and come back a better person?”

“I’m not comin’ back.”                                             

“Leave your feet sticking out the end of the bed,” I should have said. “Tomorrow morning I’ll tickle your toes. If they don’t twitch, I’ll call 911 and tell them to dump your body in the creek. We have another camper waiting for your bed.”

Zero survived the night, and so did I … but not without checking on him every few hours.

As the summer wore on I became intrigued by this smart, funny, engaging young adult who seemed to have so much going for him, but who couldn’t pull his life together or make anything go right for long. Why couldn’t he live independently? The camp supervisor summed it up: “There is only one reality,” she told him, “and you aren’t in it.” Zero’s tenure at AIM Ranch ended in chaos under threat of violence. He was taken into custody and is serving a sentence in a state-supervised ward.

My heart goes out to Zero. I’ve continued my research into autism and psychosis, and discovered that he and Ben have a lot in common: what Dr. Bernie Rimland, founder of the autism recovery movement, called “dyslogic.” Both Zero and Ben are challenged to think logically, plan for the future, control aggressive impulses, learn from their mistakes, and understand the consequences of their actions. And if Rimland’s associate, brain researcher William J. Walsh, is right, Ben and Zero share a similar biochemistry. I’ve also learned that there are many people like Zero in our jails, mental institutions, homeless shelters, and prisons. Where, under different circumstances, Ben could be too. And that’s why I’m writing to you, Johnnie. I hope to learn how better to help my son.

Continue reading "Autism Behind Bars: Johnnie B. Goode" »

Autism One and Nicholas Glenski: Recovering From Autism And Telling The World

Nick1By Teresa Conrick

In 2012 at Autism One, I met Nicholas Glenski, a young man who said he hoped to "go the distance" and one day, cure himself of autism. He was so enthusiastic and inspired by so many speakers last year that now one year later, he, himself was a speaker at Autism One -- and he did a beautiful job!

I have to confess, when Nicholas called me one evening during the winter months and told me that he was giving a talk on autism and his road to recovery, I was nervous for him as I thought how could he talk about so many issues regarding treatments? Well, being the tenacious teen that he is, Nicholas simply decided to pick up the phone and call researchers, reach out to moms on FB who were treating their own children, and seek out help by reading all he could.

His dad, Richard, told me that this journey first started three years ago in St. Louis when he took Nicholas to an autism conference and they heard Temple Grandin speak. That set off a spark in Nicholas and then a profound desire to learn more, especially when he met a biochemist there who talked about biomedical treatments for autism. One of Temple's books was bought that night, and Nicholas was later reading it voraciously when he accidentally left it in his dad's car between visits. His dad saw it and decided to read it as well. He too felt more inspired, and when he heard that Temple herself was coming to St. Louis for a presentation, Richard surprised Nicholas by taking him there. Nicholas has since told me that Jenny's McCarthy's focus on her son's journey to recovery has made Nicholas a huge fan and also an avid believer in biomedical treatments for autism. Nicholas then began researching for himself because as he stated:

"I was trapped in my body.  I could not get out."

Continue reading "Autism One and Nicholas Glenski: Recovering From Autism And Telling The World" »

Team Zoccoli Presidential Traverse 23 Mile White Mountains Hike For Autism Action

Nick Z and boys

On June 15, Nick, Nicholas and Jonathan Zoccoli are going to hike through New Hampshire's White Mountains in a 26 mile Presidential Traverse to raise money for autism action through Age of Autism.  Nick is uncle, and Jonathan and Nicky are cousins, to a terrific youngster with autism - whose Mom is a close friend of AoA's Kim Stagliano.

Nick Zoccoli, a longtime and generous supporter of AoA,  has offered to dedicate the hike to his nephew and to donate proceeds raised to AoA.

From Section Hiker
: "One of the great hikes in the White Mountains of New Hampshire is called a Presidential-Traverse-7Presidential Traverse. It’s so-called because hikers climb all of the mountains in the  Presidential Range of the White Mountains in one continuous hike that’s nearly 23 miles long with close to 9,000 feet of elevation gain."


CLICK HERE TO DONATE to team Zoccoli via PayPal - no account required.  (Firefox & Chrome users may experience difficulty. Use Yellow donate button on right sidebar)

Click the YELLOW DONATE BUTTON on the right sidebar.

Send a check payable to Age of Autism c/o Team Zoccoli 41 Northfield Lane, Berlin, CT 06037

 

Presidential Traverses are usually hiked from north to south, climbing the following sequence of peaks, in order to get the greatest elevation gains over with early on, with hikers starting before dawn and often hiking into the night.

  1. Mt Madison – 5367 feet
  2. Mt Adams – 5774 feet
  3. Mt Jefferson – 5712 feet
  4. Mt Clay – 5533 feet
  5. Mt Washington – 6288 feet
  6. Mt Monroe – 5384 feet
  7. Mt Franklin – 5001 feet
  8. Mt Eisenhower – 4780 feet
  9. Mt Pierce – 4310 feet
  10. Mt Jackson – 4052 feet

Autism Action is Year Round: Generation Rescue Grant Success

Ao Holland
We've finally left April and its namby pamby feel good (not that we don't like feel good stories at AofA) blue lit "awareness" behind. It's fitting that May first was MAY DAY - the call of distress. Here's a story from Generation Rescue, our sponsor, and provider of the Rescue Family Grant. This grant program puts dollars into familes' hands and medical treatment.  And it is quietly changing lives for the better. Thank you to Jenny McCarthy, Candace MacDonald and the entire GR team.   You can meet Jenny and bask in the GenRescue Lounge at the Autism One Generation Rescue conference in Chicago later this month.  The cost is just $50 for a five day conference if you register by May 6.

Listen to what a Mom said about what the grant has done for her son:

Less than a month into starting biomedical treatment, the Generation Rescue grant recipients are making amazing progress!

"P's teachers were thrilled today when I came to pick him up from school. They said it was the best day he's had in a long time. P's expressive and receptive language is just taking off. He is able to express anything he wants. We're over the moon! Seeing these positive changes makes us so grateful for this opportunity."

-V, Mom to P

To find out more about the Generation Rescue Family Grant program and to apply to start treatment, please visit Gen Rescue.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Brilliance of Autism Exhibit, AutismOne

From Natalie's children's art book


Brilliance of Autism Exhibit, AutismOne, May 22-26, Intercontinental

Many artists on the spectrum will share their beauty and talent with attendees at AutismOne, May 22-26.  There will be an art reception in the hotel lobby art gallery on Wednesday, May 22, followed by days of art display and exhibits. 

Natalie Totire, whose lovely artwork is featured with this article, is just one of the artists who will be represented. As a child, Natalie only drew flowers. Later she would include animals in her drawings. Not until many years later did she start feeling comfortable drawing people. “My art isn’t just a hobby or a career. I have to use it to think and remember. If I don’t draw it or write something down, I barely remember it.”

For more information about the artists, please visit the Autism One Generation Rescue Conference site.

Book Review: The Thinking Moms' Revolution

Tmr bookBy Anne Dachel

After reading the Thinking Moms’ Revolution, I know one thing: this is our book.  The twenty-three moms and one dad included in TMR tell all our stories to some degree.  And they are THINKING.  They question, they research, they dispute, and they discover.  The title is a perfect one for what these people do.
 
As we all know, no two autistic children are exactly alike and neither are their parents’ experiences.  There are however, lots of common threads revealed in the book.  There are the accounts of the bubbling excitement and great expectations parents had when their children were born and the disbelief and fear in the face of regression and developmental stops.  There are the doctors who failed to understand what autism is doing to our children or to provide real help to parents.
 
TMR is also about hope and success.  It’s moms who struck out on their own to find answers and did it.  It was the Internet that was their lifeline. There they found resources and support groups like the Thinking Moms, the National Autism Association, Age of Autism, and Talk About Curing Autism.  Most of all, they made connections with other parents that empowered and informed them.  The computer provided the education they needed.  Moms learned about homeopathy, organic food, supplements and special diets. 
 
“Homeopathy brought speech, receptive language, cognitive gains and increased awareness.” 
p.16.

Continue reading "Book Review: The Thinking Moms' Revolution" »

Color Me Blue

Bella HandThank you to a reader who sent us this poem for World Autism Day. The photo is my daughter's hand from one of the several injuries she received during her months of abuse while riding the bus. Black and blue should be the colors of today - as so many of our loved ones face danger because of their autism.  K




Color me blue

I’m aware of your pain
That your child was harmed
By a merciless bane

Color me blue
I’m aware of their woe
That they face hardships
Which others don’t know

Color me blue
I’m aware of turned heads
Who should be helping
But who hurt instead

Color me blue
And a tear for you
My heart goes out
Color me blue

John's Missing: Autism, Wandering and Why We Need Action Now

BucknamManaging Editor's Note: For  information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.

By Mark Bucknam

It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC.   At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder.   John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day.  Raising John, a moderately autistic adolescent, required a team effort by his parents.  John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children.  Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.

A few weeks from his 15th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence.  That was autism…or at least the manifestation of autism in John.  Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits.  They lack interpersonal skills. 

Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly.  John was 5’8” tall, trim and solid at 140 pounds.  He usually slept well, but was full of nervous energy during his waking hours. 

It had not been a good night.  John had barged into his parent’s bedroom at 2:30 in the morning, fully awake.  His groggy parents teamed up to coax and cajole him back to his own bed.  His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed.  John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked. 

For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage.  The locks were identical, excepting for the one on the front door.  They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination.  All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday. 

Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news.   He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime.  By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom. 

John’s bed was empty. 

Continue reading "John's Missing: Autism, Wandering and Why We Need Action Now" »

Winner! Heart of An Angel Necklace From The Puzzling Place

Congrats to Daniella, our winner!

Thank you to Melissa at The Puzzling Piece for offering us a beautiful heart necklace for a lucky AofA reader.    Melissa started the "iPad Challenge" program for families to win an iPad in an easy sales contest.  It's almost Autism Action Month - a great time to join the Challenge. 


Puzzling Piece Commercial from Flying Pig Ranch Studios on Vimeo.

Polly Tommey Welcomes UK Government Announcement on Private Homes

TheAutismTrustPolly Tommey, the founder and trustee of The Autism Trust, welcomed yesterday’s government announcement that thousands of patients will be taken out of NHS funded private hospitals and placed in community-based care.

Polly said, “Thousands of young people with Autism and learning disabilities have been placed in care that is now seen to be inappropriate. The Autism Trust has campaigned for years on this issue. Young people with autism need to be in care that is safe and mindful of the person’s needs. It needs to be near their home and also needs to provide them with work, a social life and a stable caring environment. In many cases this is simply not happening.”

In contrast, over the last few months The Autism Trust has developed Polly’s Place in Sunninghill, Berkshire. This social enterprise store was developed by Polly Tommey to enable people with autism to lead fulfilling and rewarding lives. It provides retail and administrative experiences and showcases the artistic talents of people with an autism spectrum disorder. The Autism Trust is also promoting home working as a recognisable economic solution and encouraging homemade and handmade as an artisan skill to be celebrated and compensated for. This is the beginning of a project that will eventually provide a community based resource, enabling young autistic people to sample “real world living” by working in the community. Being developed alongside it is the concept of a Whole Health Learning Clinic offering a range of specialist training to parents and professional care staff to promote the health and wellbeing of people with autism.

Continue reading "Polly Tommey Welcomes UK Government Announcement on Private Homes" »

Juggling the Astronaut: Failure to Launch

James Frye GraduatesManaging Editor's Note: We ran a post by Wendy called Juggling The Astronaut, Autism into Adulthood last summer.  Below is her follow up. Unfortunately, there was no lift off - but we keep reaching for the stars for our children, whether tots or adults.

By Wendy Frye

The disability services advisor at our local community college needed to meet with us before our son could be admitted to classes. The gate-keeper in charge claimed 30 years of experience in disability services while he eyed our son. Our son, who just happens to be a very talented artist, diagnosed on the autism spectrum when he was three and half and a recent high school graduate.

My husband and devoted father to our two son comes from a family of educators. It was only logical that our son continue his secondary education as an extension of his student experience that started when he was 3 1/2 years old. Like a long rising phoenix, this young man had paid his dues and deserved a college experience, Right?

Wrong. Apparently we were dead-assed wrong and the minutes scribed during our brief meeting will only relay our ignorance. The road we travel just got infinitely longer supporting our now adult son with ASD.

The gate-keeper required him to pass a 3 hour reading and writing assessment, unsupported, with a timer looming in the corner. For art classes - even labs. Awesome. Didn't we cover our Achilles heel well enough over the 15 years of education, therapies, assessments, awards, grades, passing federal standardized testing, his web-site, posted online art submissions all while earning exceptional honors? Nope.

Losing eye contact. Right. About. Now.

We, the parents, knew exactly what was happening. Our son was being deliberately set up to fail. This was not acceptable, on any level, with any student. On the way home, the conversation in the car yielded a new plan. Anxiety was replaced with reassurance that he would NEVER again have to take class or be assessed just to learn the skills he needs to use equipment and techniques to create his own brand of graphic arts.

Continue reading "Juggling the Astronaut: Failure to Launch" »

Calling All Artists with Autism: Earn Extra Holiday Shopping Money

AWARD_WINNING_UN_STAMP_An_Abstract_Garden_II_acylic__mixed_media_36_x24_Trent_Altman

SUPPORTING THE GIFT OF ART AND MICROENTERPRISE

Artists with Autism, Earn Extra Holiday Shopping Money

Beacon Day School, supporting programs for adults and microenterprise, would like to obtain more artwork by individuals with autism to beautify the environment for students. Beacon Day School features many paintings by award-winning artist Trent Altman, whose mother, Dr. Jackie Marquette, recently came on board as AutismOne art curator.

Between December 5th and December 15th, individuals with autism or their caregivers are invited to email pdf or jpg images of their art that is valued between $150-$500 to [email protected].


Please include the artist's name, website address, mailing address, phone number, and dimensions and price of each piece submitted by December 15th (also send a second email with no attachment that lets Beacon know of your submittal, just in case the email with an attachment bounces). Three pieces will be selected, which, after verification of availability to ship to Beacon by January 11th, will be announced on the Beacon Day School website's Focus on Art tab, www.beacondayschool.com/artists.html, on December 18th. A check will be mailed from Beacon to the three selected artists December 19th (shipping costs are the responsibility of the artist; please ship insured). Selected pieces will be depicted on the Beacon website and displayed at the AutismOne conference in May 2013.

 

 

Happy Thanksgiving

Here's to Thanksgiving with our own personal stamp. We might not be "traditional" but we have homes full of love, caring and the strongest folks since.... the Pilgrims.  Happy Thanksgiving friends.   (PS) Is that toast GF?


Falling A Play About Autism's Less "Fundraiser-Worthy" Side

FallingFalling, written by Deanna Jent, is a play now running in New York, off Broadway.  Autism, like many difficult topics in America, is often sanitized  to the point of saccharine caricature.  Not Falling, which brings the audience into a home with a severely autistic man - an 18 year old boy.  Perhaps it's your home? (Photo Julia Murney and Daniel Everidge star in 'Falling,' now playing off-Broadway. / AP/David Gersten & Associates)

Here's part of the review from The Asbury Park Press by Bill Canacci: Sometimes we need more than statistics to help us understand. That is likely why Deanna Jent wrote “Falling,” a powerful new play about how a couple copes with their 18-year-old autistic son.The numbers tell one side of the story: One in 88 children have been identified with an autism spectrum disorder. For boys, it’s 1 in 54.But in 75 minutes, Jent gives audiences a glimpse of what families touched by autism likely have to go through every day.

Here's the review in Newsday:

This sounds like a Lifetime movie, but don't be fooled. "Falling," which has practically crept into town from the Mustard Seed Theatre in St. Louis, is an unflinching and unsanitized drama about family life with a severely autistic 18-year-old boy.

Directed with enormous sensitivity and edge by Lori Adams, Deanna Jent's exhausting, strangely exhilarating new play deserves to be far more than a destination for autism fundraising benefits and people with personal investment in that isolating world.

Continue reading "Falling A Play About Autism's Less "Fundraiser-Worthy" Side " »

The Lion King Lowers Its Roar for Autism

Lion King TIcketNote: Last year we ran a post about the first showing of The Lion King on Broadway - a special performance to invite people with autism to enjoy the theatre.  A second show ran last week - and below is the POV of one of the actors from Broadway World.com.   While seeking treatments and answers for autism - we have to live and enjoy life and allow our kids to experience the world around them.  After all, it's a hard knock life for us." Oops, wrong show. ;)  Thank you to The Lion King production.

Last fall, Theatre Development Fund (TDF) piloted the new program, Autism Theatre Initiative, as part of TDF’s Accessibility Programs (TAP), to make theatre accessible to children and adults on the autism spectrum, and their families. They presented the first-ever autism-friendly performance of a Broadway show at Disney’s landmark The Lion King on October 2, 2011 and followed that up with an autism-friendly performance of Disney and Cameron Mackintosh’s Mary Poppins on April 29, 2012. 

On September 30, the cast of The Lion King took part in another autism-friendly performance, and Rod Thomas, an actor in the show, wrote about the experience from his perspective. The full piece is as follows: 

"The Lion King" is a remarkable show for so many different reasons, but I want to share a small footnote of its history with you.

 I remember seeing "The Lion King" for the first time on Broadway in 1999 in the New Amsterdam Theater and being completely captivated.  I remember seeing it in Des Moines, IA on the day I joined the National Tour in 2006.  I've seen it countless times in cities across the country and beyond - from Honolulu, Hawaii where it was received with an incredible amount of love and joy to Mexico City in an arena so large they simulcast it on two large screens above the stage.  It is amazing how much audiences still go wild for it every night almost 15 years later.

Continue reading "The Lion King Lowers Its Roar for Autism" »

Life Care Planning and Autism

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A BEACON OF LIGHT AND HOPE FOR LIFE CARE PLANNING:  Dr. Mary Joann Lang and Edward Miguel, COO, interview Michael Sanders, MBA, and Lisa Rudley, MBA

What do you need to do to ensure sufficient resources for your ASD child’s future during adulthood? Dr. Mary Joann Lang, founder, and Edward Miguel, chief operating officer, of Beacon Day School interview Michael Sanders, MBA, and Lisa Rudley, MBA, about the vital topic of life care planning. 

Polly Tommey Launches "Polly's Place" For Young Adults with Autism

Polly tommey(London, England)

Polly Tommey launches ‘Polly’s Place’: supporting Real World Living for young adults with Autism

Polly Tommey, a mother from London with a son with autism and Founder of The Autism Trust will be opening Polly’s Place in Sunninghill, Ascot as the charity’s first retail, training and administrative facility on Friday 5th October 2012.

Polly Tommey set up The Autism Trust in 2006 to support the creation of a better future with real purpose for children everywhere with autism as her son Billy, approached his teenage years with very uncertain prospects for his own future.

Polly’s Place is an exciting new shop that has been developed as a social enterprise to help people with autism lead more fulfilling and rewarding lives. The retail training shop will provide both customer-­‐facing and administrative experiences whilst showcasing artistic talents of people with Autism Spectrum Disorder (ASD).

Many vulnerable young adults with autism live at home, so Polly’s Place will promote home working and individual creativity as a recognisable and important contributor to the local economies of the UK encouraging high quality homemade/handmade products created through artisan skill to be celebrated.

At the very centre of all activities undertaken by The Autism Trust is the concept of “Wellbeing”. It is the core “mantra” of the organisation, the wellbeing of any person involved with the Trust is key. It is about identifying when a person with Autism is becoming stressed and giving them “time-­‐out or a calm down break”. It is also about providing a range of strategies that will help the individual learn to cope with difficult situations.

A parallel programme: ‘AH-­‐HA’ (Autistic Helping Hands in Ascot), will also be started by The Autism Trust in October to provide services for the local community. Initial projects will include garden tidying and maintenance to members of the local elderly at-­‐home population.

Continue reading "Polly Tommey Launches "Polly's Place" For Young Adults with Autism" »

She’ll Have a Good Life

GoodBy Julie Obradovic

“She’ll have a good life,” she said, reassuring me that everything was going to be okay.

The emphasis was on the good, not in a way that stressed “awesome” “great” or “fantastic”, but in a way that expressed “satisfactory”, “acceptable”, or “decent”.

It was meant to be helpful, I know. It was meant to remind me that things could be so much worse. It was meant to make me feel better.

It didn’t. In fact, it just made me angry…and then sad.

When I look back on my life thus far, I’m relieved to find that my feelings about it are overwhelmingly those of joy and gratitude. I have had a great life, I believe. In fact, I feel like one of the most blessed people on the planet. I really mean that.

It’s only when I really start to think about the tragedy that befell my daughter and our family that I begin to question it.

My child was poisoned. Her brain and body irrevocably damaged. Her life’s potential stolen. Her suffering and experience denied by those who caused it, the same people needed to fix it. Betrayed by our country and our media. Our marriage fragmented. Our lives cracked in half. The pain coming this close to breaking us. Breaking me.

Great life? Really?

And yet, the answer to that is still the same, beyond any shadow of a doubt. Yes, I’ve had a great life. One of the greatest I know.

For I have lived in Spain and danced in the fountains of Madrid and on the shores of Ibiza at midnight.

I have celebrated in Wembley Stadium with over 100,000 people singing in unison…including Prince William.

I have completed a marathon…in Alaska…while pregnant. And I swear I’m not making that up.

I have married and stayed married to the most perfect man on the planet for me, twenty years together this November, teenagers when we met.

I have excelled in academics and have never really had to work hard for anything…until marriage…and then Autism…and then marriage again.

I have the most loving, supporting, amazing, and hilarious family anyone could ever ask for.

I have had the same best friends since I was 7 years old, and we are still as close, if not closer, than we ever were.

I live in Chicago.

I have been able to use my favorite creative outlet, writing, to actually make a difference.

I have marched on Washington for what I believe in. Thrice.

I have stroked my children’s hair while I have rocked them to sleep, breathed in the scent of them as newborns just placed in my arms, and in those moments, have repeatedly experienced true, unconditional love.

I have learned what it means to be willing to die for someone if it would mean an end to their suffering, no questions asked.

I’ve had the privilege of teaching at two of the best schools in the nation.

I’ve been healthy and active, running and exercising my whole life without injury or difficulty.

I’ve learned I’m stronger, smarter, and more powerful than I ever could have imagined. And I’ve been really frightened by the responsibility that brings.

I have seen my favorite band in concert five times, and once, I even got chosen from a crowd of tens of thousands of people to sit in the front row while they shot a video.

I have been honored by Oprah Winfrey as one of America’s best teachers, showered in her “Favorite Things” on television (only to come home hours later and receive a diagnosis that would change my life forever).

And most incredible…she recovered.

Continue reading "She’ll Have a Good Life" »

The Pain You Can’t See

Natalie Career Dreams Poster

By Natalie Palumbo

Early in the summer, I received a letter notifying me that my school district was honoring me for ‘My Career Dreams’ poster during the June district meeting.  My entry for the National Career Development Poster Contest had placed first in state, and third place nationally.  The June meeting date, as well as the July date, fell during my Precollege session at Ringling College of Art and Design.  Thankfully, the district rescheduled me for August on the last day of summer vacation.

I spent that day organizing my supplies for the first day of school, and finally getting my learner’s Natalie Centurypermit.  This is my senior year.  My older brother Anthony has low verbal autism, and aged out of special education services June 2012, and is now home full time with my mom.  Anthony is prone to very loud echolalia which he can’t control.  Family events requiring a respectful silence are handled by one parent staying home with Anthony, and the other parent attending the event.  My father’s work schedule had interfered with many of my art recognitions over the years.  My mother did not want him to miss another opportunity, so my dad accompanied me and my mother stayed home with Anthony.

When my father and I arrived at the district auditorium, we were told that I was also being recognized for my senior project work, which led to my becoming a contributing editor for Age of Autism.  This came as a complete surprise.  We were prepared for my art acknowledgment, but had no idea there would be any recognition for Age of Autism.  My father was very proud they wanted to extend dual recognition.  However, it was emotionally bittersweet to have one child being recognized for accomplishments inspired by the other more vulnerable one.  We both couldn’t help but wonder what Anthony’s accomplishments might have been if autism hadn’t come to call.  Even our happy moments have a little pain underneath.

In attendance was Melissa Rawl, principal of Lexington High School, and Ken Lake, the principal of Lexington Technology Center.  The Board of Trustees welcomed everyone, and said the meeting would be brief because the school year was starting the next day.  They handed out a newsletter entitled “Proof Positive” which honors students and teachers receiving state, national, and international awards.  I was categorized under “Visual Arts Awards”.

Continue reading "The Pain You Can’t See" »

AutismOne A Conversation of Hope: Beacon Day School

ListenTuesday, 8/28 on the VoiceAmerica Health and Wellness Channel

AutismOne: A Conversation of Hope

Noon Eastern, 9 am Pacific

www.health.voiceamerica.com

A BEACON OF LIGHT FOR YOUR CHILD, with Dr. Mary Joann Lang and Edward Miguel

We hear so many stories from around the country of special ed programs not serving children well or – worse – putting children in danger.  Few things give parents as much hope as a good school program with caring staff members who treat students with kindness and respect.  Dr. Mary Joann Lang, founder, and Edward Miguel, chief operating officer, of Beacon Day School talk about the current model and future hopes for Beacon programs, including new technology, integrative education, support staff for children with medical issues, transitional needs, and the looming national crisis in adult care for individuals with autism.  Dr. Lang will particularly address adult issues and explore thoughts for moving forward into a future with hope.  Please visit www.beacondayschool.com.

 

 

Juggling the Astronaut: Autism into Adulthood

James Frye Graduates

By Wendy Frye

This spring, our son graduated from high school.

Born well and happy, he like many of the children you read about, regressed back into himself after his early rounds of routine vaccinations.  He became very sick, unhappy and while meeting his major milestones on time, lost his ability to communicate with us using language.

"He's a boy, they are late talkers." "Wait until he is three years old, it will come."  Eventually, after many years of expert opinion and conjecture, we were handed a diagnosis of Autistic Spectrum Disorder.  The diagnosis delivered complete with long stares and a diatribe of advice which included an institution at the end of our 18 years of parenting.

Our family dynamic never "changed" or "wavered" from the original plan.  We vowed to do anything and everything to help this child, my first born, regain what was so bullishly robbed from him including his health, happiness and a healthy future.  This happened over 15 years ago - when 1 in 10,000 won this Autism lottery.  Always (always, always!) holding steadfast and headstrong into the winds of what many families are dealing with now, we are emerging at another side of the story.  He's not 100 percent, but he is the best version of himself, right here, right now.

This spring, our son graduated from high school.

To accomplish his graduation our son endured more challenges, trials and tribulations than is room to list here.  He came from the back of the pack, shackled to an iron rod, his tongue tied up in poor health and a system that let him down.  A true dark horse is what my son is.

James Frye ProudHow did he do it?  The day after diagnosis we started building a "launchpad" if you will.  A port in the storm where he could find his health, gain his voice, and ultimately blast off to leave his fingerprint on this world. Biological interventions coupled with sensory based therapies EVERY SINGLE DAY became our families norm.  He did it all. As they say, you can lead a horse to water but you can't make them drink.  Well, he drank it in, took responsibility to grow into the fine young man he is today.

This spring, our son graduated from high school.

This young man is a self-declared artist.  On his own accord he has studied art history, memorized styles and artists to go on and create fractal, abstract and downright provocative compositions with his own hand.  He names the pieces so thoughtfully, giving us insight about what it is like to be Autistic.  He proclaims he is an artist with Autism.  And knowing this world so desperately wants to know more about how he feels and thinks, it has become his pleasure to offer his works for sale, with proceeds going back to the fine organizations like Age of Autism.

This spring, our son graduated from high school. 

Continue reading "Juggling the Astronaut: Autism into Adulthood" »

Autism On The Seas Contest for FREE Vacation Now Open in Georgia, Alabama and Mississippi!

Autism_on_the_Seas_Logo_JPEGAutism on the Seas (AotS), a niche travel company catering to vacationing Skyeward-bound-ranchfamilies with special needs, and Skyeward Bound Ranch (SBR), a non-profit charity dedicated to providing social and recreational interaction for specially challenged youth, jointly announced today the tri-state kickoff of the “I Need a Special Vacation” Essay Contest in Alabama, Georgia and Mississippi. The essay winner, as well as the winner’s non-profit autism support group of choice each receive a special needs cruise or land resort vacation with AotS.

“Now entering our third regional contest market, we are all pumped up on the joy and excitement this initiative has created,” says Dalace-Skye Duvall, Founder and President of Skyeward Bound Ranch. What’s really wonderful about this whole campaign is the fact that we now have a growing list of terrific deserving families that we may be able to grant Autism on the Seas vacations to.”

“We want to congratulate our recent Florida region winner, Candy Rhodes, and her family. Rhodes selected the Peace By Piece Learning Center in Fort Myers as her non-profit autism advocacy group of choice to receive a cruise donation,” says Mike Sobbell, founder and owner of Autism on the Seas. We’re excited and hope that this gift will help them to raise funds for their organization.”

The unique partnership with Skyeward Bound Ranch has made it possible to offer the Autism community a chance to win a special needs vacation or receive a grant that will enable them to take a real vacation with Autism on the Seas and other like families, in an environment that is comfortable, accommodating, accepting and fun!”

“I Need a Special Vacation” Essay Contest Kicks Off in Alabama, Georgia and Mississippi

Over the next year, AotS will run in-market contests with participating local autism advocacy groups, as well as local chapters of national organizations, such as Autism Speaks and the National Autism Association. Families interested in entering the contest will be asked to write a 250-word essay on why they need a special vacation.

The winner will receive a paid cruise or land resort vacation with AotS. Additionally, the non-profit autism advocacy organization named on the entry form by the winner will also receive a cruise. The organization may use the cruise to raise funds or however they wish. Runner-up prizes will also be included.

Contest rules and submission deadlines will be listed on the AotS website, www.AutismontheSeas.com. As the promotion is rolled out in each market, AotS will make announcements and post updates to their website. AotS is accepting entries from Alabama, Georgia and Mississippi contestants starting on July 26th. The submission deadline is August 22nd; winning family and organization will be selected and notified by August 31st, 2012.

Esteemed Panel of Contest Judges

Continue reading "Autism On The Seas Contest for FREE Vacation Now Open in Georgia, Alabama and Mississippi!" »

Learn About Extreme Sports Camp for Kids with Autism

Extreme

This Tuesday, noon Eastern, on the VoiceAmerica Health and Wellness Channel www.health.voiceamerica.com

AutismOne: A Conversation of Hope

Extreme Sports Camp, with Sally Bernard

Autism enrichment pioneer, Sally Bernard, is joined by her staff at Extreme Sports Camp for this on location interview by Betsy Hicks, whose son is attending the camp in Aspen, Colorado.  The camp focuses on teaching both children and adults with autism, outdoor sports where they are actively engaged so that the attendees learn skills rather then passively participating. This year kicks off their new adult program which additionally teaches employment skills making sure to challenge participants appropriately.

 

Austin Adults with Autism Celebrate Grand Opening of ‘An Independent Me’ (AIM) Residence and Summer Camp that Aims to Empower and Inspire

AustinAn Independent Me (AIM), a full-time residence and summer camp for adults (18 and older) with Autism Spectrum Disorder (ASD) in Round Rock celebrates its grand opening on Saturday, June 30th from 4-8 p.m. Interested parents and the local community are encouraged to attend to learn about day camp opportunities and full-time residence at AIM.

AIM kicked off its first session on June 11, 2012 and with seven campers and one resident in attendance, the first two weeks have been a major success. Adults at AIM have learned how to build a picnic table from wood planks, care for livestock on the ranch-style property, sew, and plant the seeds for an on-site vegetable garden. The grand opening is open to the public and will include bar-b-que, horseback riding, a petting zoo, games, and a silent auction featuring camper-created art and picnic tables.

AIM exceeds standard expectations of group homes for individuals with development disabilities, providing:

  • personalized care, attention and support with a 3:1 ratio (three campers/residents to one staff member);
  • specialists to create developmental plans for each camper; and
  • partnerships with local community organizations to offer unique job, microenterprise, and volunteer opportunities.

Last week, one animal-loving camper shadowed a veterinary technician for two days at nearby Block House Creek Animal Hospital. Angela Day, AIM founder and mother to son with autism beams with pride, "In developing An Independent Me, my heart is full as I spend time with the smiling faces of these innocent souls, teaching them to become as independent as possible, and providing rewarding and individually challenging activities for them on a daily basis."

Continue reading "Austin Adults with Autism Celebrate Grand Opening of ‘An Independent Me’ (AIM) Residence and Summer Camp that Aims to Empower and Inspire " »

When “Special Needs” Services Really Don’t Apply To Your Special Needs Child

J flintonBy Jennifer Flinton

My 10-year-old autistic son was dis-enrolled from the adaptive summer day camp at our local recreation center today.  This was a camp specifically designed for special needs children; there were actually several kids my son knew from school in the very same camp.  I’m starting to detect an emerging trend here.  “Special needs” doesn’t necessarily apply to my son, who is totally non-verbal and is on the more severe end of the autism spectrum.

This has happened before.  I enroll my son in what seems, on paper, to be an ideal program for him – small staff-to-child ratio, lots of activities to keep him occupied, and most importantly, staff trained to understand and work with special kiddos like mine.  Then, when my son and I go for our first day, we quickly realize that they really didn’t mean kids like him, with often severe outbursts of behavior, self-injurious behavior, and aggression.  They want compliant kids; those kids with special needs who might just be a little physically slower or cognitively slightly impaired.  Those are the kids who look good on the brochure, not my kid who’s red-faced and whose nose is running snot because he’s been screaming for the past hour.

The first experience like this was with a TOPS Soccer group in our hometown of Olympia, WA.  The “cute,” compliant special needs children loved the indoor gym and were eager to participate in the group warm-up activities.  My son covered his ears due to the echoes of the gym, and wanted nothing more than to leave – he kept crying and tugging at me to go.  We gave up after 4 or 5 practices.

The next experience was with a social skills group for ASD children.  The first year we were here in the Austin, TX area, my son did well with this group, so I was the first to sign him up the following year.  I found out a week before the group was scheduled to start (and once it was too late to find another summer activity for him because they were all long since full) that the agency had decided to have a higher functioning social skills group, where they could take community field trips and such, so my lower-functioning son could not participate.  Sorry.

A few weeks after that, my son’s speech therapist gave us an ultimatum…either my son’s aggressive outbursts had to drastically improve within two weeks, or he could no longer receive speech services from her.  Considering we’d been doing almost nothing but trying to stop his behavioral outbursts for years, this was not a likely possibility.  I was a bit surprised because the head of that speech clinic was a BCBA herself.  Surely, if anyone should be able to work with behaviorally involved ASD children, it was her and her staff.  So, we didn’t bother to wait the two weeks – we stopped going on the spot.

We decided to try Miracle League baseball – a baseball team specifically designed for special needs children.  They assigned a one-on-one volunteer to every child, which in theory sounded perfect for my son.  Well, it turned out that these volunteers were middle and high school students who really didn’t know how to handle more severe behaviors like my son has.  Also, it was disappointing to them not to get the emotional feedback from my son and other children like him – if they were going to volunteer, they wanted to feel like they were having a positive impact on the children.  Several families with more severely affected children were asked not to participate any longer.

Continue reading "When “Special Needs” Services Really Don’t Apply To Your Special Needs Child" »

Retired 9/11 Firefighter Writes to President Obama About Urgency of Autism

Tims BootsBy Tim Dwyer

President Obama

I am sending you these boots to symbolize the fact that my son Colin will never be a third generation NYC Firefighter, Colin like 1.5 million other American children and young adults has Autism.  Our children are getting older and the Autism debate is endless, I just left my sons school and had to step around a student having a “difficult” time sprawled out on the floor, we parents are heartbroken and angry that our beautiful kids are so tormented, they have no future, and we anguish over what will become of them when we are no longer around to care for them.

 We need a cure, and we need your help, it won’t cost you a dime, just a few passionate words. We need you to be brave like my son and bold like President Kennedy when in dramatic and unforgettable fashion he challenged  the scientific community of the day to put a man on the moon, his words were powerful and inspired our nation to one of the greatest achievements in human history.  Our Autistic sons and daughters need you to push the scientific community of today the same way, inspire and challenge them to find a cure for Autism by the end of this decade. We need a champion and from where I’m standing saving 1.5 million lives plus future generations is a far greater achievement than putting a man on the moon.  

Ask the  X Prize foundation to set up a $10 million prize for our cure, if they are not interested we Fire alarmcan raise the money ourselves through Autism Speaks the “A” prize,  (Managing Editor's Note: Tim and I had a good laugh over that suggestion but maybe if the President asks, they'll "listen" so to speak) there are so many of us it will only be a few bucks a head. Attached is a check for the first $100.00 for the fund, and I will mortgage my house and liquidate every asset we have if needed.

 The reason we need to go this route is simple, nothing has changed in the last 10 years, millions have been wasted on the same gene studies, and we are no closer to a cure. The CDC has stood by and watched the numbers of new cases grow with horrifying callousness.  We need to get government and big pharma out of the way and put a bounty on Autism's head. I often think about the guys who came up with the HIV protocol they were denied grants and worked out of a garage in Jersey, these are the kind of people who will find our cure.        

Continue reading "Retired 9/11 Firefighter Writes to President Obama About Urgency of Autism" »

Remembering My Best Mother's Day Gift Ever

Wild flowers
By Lin Wessels

Remembering my best Mother's Day gift ever......

Sam was about three and half. He very much struggled with speaking and communication. It was a truly difficult and trying time for all of us. The ASD diagnosis was still so new to us.  Out hearts ached for our son, for the unknown, for what might become of him. We were terrified. Sam was frustrated with no means to connect to others, to have his wants and needs known. The world had become a strange and foreign place for him. Where all things had once been right with the world, now nothing was.

We were outside. I was messing in my flower beds, something I love to do. As Sam and I walked alongside our home, Sam paused. He bent over and plucked a wild violet, from amongst the grassy abyss. He then turned to me and said, "fower," as he handed it to me. I recall being so taken aback that I had to stop and really think about what had occurred. He had so few words at that time. The vast majority of his words had long ago disappeared. We were working feverishly to try and gain them back.  He was utterly disengaged with his environment, including us, his parents. He had long ago stopped responding to even the sound of his own name. We had no way of knowing if we might possibly succeed in helping him to regain those skills now lost to autism. 

I was in awe......I know my heart most certainly skipped a beat. I may have actually stopped breathing momentarily.  I cannot begin to accurately describe the pure joy that overcame me. Not only did Sam engage with me by giving me a "fower" from a weed patch, but he also called it by name, "fower."  It still brings tears to my eyes the same way it did that Mother's Day so many years ago. It still fills my heart to overflowing. There was hope! There IS hope!!

To this day, I don't pull wild violets out of my otherwise meticulously manicured flower beds. They shall ne'er again be simply another annoyance to me. What was once readily thought of as merely an eyesore had now become a genuine treasure. They make me smile and give me great pleasure. They fill my heart as I trust there are better days ahead.......They symbolize HOPE!  ♥ 

I still have that beautiful violet "fower" pressed inside my grandmother's Bible. And, I still very much have hope for my son and his future.  Believe.........

Lin Wessels
Sam's MAMA (Mom on A Mission for Autism)

"All that is necessary for the triumph of evil is that good men do nothing." (Edmund Burke)

“An Independent Me” Opens Doors and Opportunities for Austin TX Adults with Autism in Summer 2012

IStock_000012657227XSmall1“An Independent Me” Opens Doors and Opportunities for Austin Adults with Autism in Summer 2012

Transformative living facility becomes a home for adults with developmental disabilities.

An Independent Me (AIM), a living experience for people ages 16 and older with developmental disabilities, will open its doors as a summer camp in Cedar Park on June 11, 2012. AIM provides a safe and supportive environment for adults with Autism Spectrum Disorder (ASD). Using scientifically validated techniques and curriculum, the camp will teach life skills, support educational opportunities, provide on-the-job-training and coaching, create meaningful jobs, and prepare campers for a step up to the next level of independence. Come fall, the camp will convert to a group home. Campers will have the option of staying on as residents.

This extraordinary setting in Cedar Park, Texas includes an ranch house on 4.5 acres of pastureland plus a horse barn – a fenced rural retreat in the middle of this booming Austin-area subdivision offering opportunities from high-touch to high-tech. Campers can interact with horses, sheep and chickens and cultivate gardens; take art and video classes on site; and participate in camper-guided tours of YouTube, Facebook, and the Web. Participants can also elect to take classes at the nearby Austin Community College (ACC) campus. AIM will work with Texas Department of Assistive and Rehabilitative Services (DARS) as well as neighborhood restaurants and other businesses to provide job opportunities for campers. Transportation to and from school and work will be provided by the camp.

http://www.livingwithmeaning.org/sponsor-a-camper/

Angela Day, AIM Board President, says “This is an extraordinary community. Vocational, educational, and life skills training is designed specifically for the needs of those on the entire ASD spectrum, from non-verbal autism to high-functioning Aspergers. We are excited about our exceptional staff, who will make sure each resident and family member who walks through our doors feels safe and secure, and sees a bright future.”

Continue reading "“An Independent Me” Opens Doors and Opportunities for Austin TX Adults with Autism in Summer 2012" »

My Autistic Son has NOT Ruined my Life

Live For Today

By: Jamie Pacton

My best friend is obsessed with tragic mom blogs. She spends way too much time in her work-from-home day reading sad stories about moms whose kids have terminal diseases, rare genetic conditions, and a host of other maladies that are really quite heartbreaking.  I’m not quite sure what pulls her to these narratives— it could be a can’t-look-away-from-flaming-wreckage voyeurism, or it could be from a sense of there-but-for-the-grace-of-god-go-I reflection on her own happy, healthy kids, or it could be something else. Even she’s not sure, but she keeps reading. 

When my son—who’s only 4 days younger than her oldest son— was diagnosed with severe autism last year, she expanded her tragic-mom-blog reading to encompass autism and other delays.

Recently, she sent me a link to a heavy-heavy conversation between parents of kids with special needs. She warned me that it was “VERY heart wrenching (think Tragic Mom Blog level CUBED) and while it opens a window of perspective for me - it might flood you with emotion (good & bad)....”

And so, I went here at once:

On this page parents of kids with disabilities confess the deep, dark thoughts that literally that keep them up at night.  These parents are raw, candid, and utterly grief-stricken.  Since I’ve been there before and since I still get daily grief bursts for the life-my-son-could-have-had, I read on, and on, and on.

As I read two themes emerged:

1.     My disabled child has ruined my life

2.     I wish he/she was dead

Sheesh.

Want to know why these comments are, as my best friend warned me, “tragic mom blog CUBED”?

Simple: moms of kids with terminal diseases are desperate to have their kids pull through, to live, and to grow old.  They want life for their children.

The opposite is true of the parents with disabled kids who have written on this website.  According to these parents: the best we can hope for our disabled kids is an early death.

Continue reading "My Autistic Son has NOT Ruined my Life" »

Demonic? No, “Give Autism A Chance” in Austin.

Spider-entrance-new

By Dan E. Burns

Facebook rumors circulated that the café was “demonic,” but that didn’t stop an overflow crowd from enjoying “Give Autism A Chance” at family-friendly Spider House in the keep-it-weird city of Austin, Texas. Our teens fit right in at this funky eclectic coffee house. The goal was to demonstrate that young adults with Autism Spectrum Disorders can contribute to the workforce and give back to society. And in this laid-back campus refuge, they did.  Patrons only joked with him when my son, Ben, swiped a finger through the whipped cream on somebody’s waffle cake.

How did it go? Lainey Melnick writes, “Thank you all for a delightful event. My son, Daniel Freeman, had a wonderful time and is really hoping it leads to some new opportunities.” And maybe now he’ll get them. Jennifer Kaut, Autism Employment Specialist with Texas Rehabilitative Services (DARS), was there to give Ben and other job-seeking young adults a second look. “As an ASD mom,” she said, “my goal is to revolutionize the transition to jobs statewide.”

Here’s how Leslie Phillips, Houston Chronicle blogger, ASD mom, and Canary Party supporter experienced the event: It was a brilliant weekend in Austin for the US launch of Give Autism a Chance. Two hard-working dedicated teens pulled off the event with help from some parent advocates, capable young adults with autism, and visitors from UK including Autism Trust founder Polly Tommey. Dan Burns, board chair of Autism Trust USA, was also on hand with his wife Sue, and adult son Ben.  (Read more at Leslie's Chron blog.)

Here’s video of Ben clearing tables:

Here’s local video news coverage coverage of “Give Autism a Chance.” (Note the video is on FB and might not be accessible to all readers.)

The surprise for me was how much we enjoyed our kids.  In a restaurant.  The surprise for Ben’s mom: “I was astonished at how much he could do.”

Dan E. Burns, Ph.D., is Adult Issues Liaison for AutismOne and the author of Saving Ben: A Father's Story of Autism. Burns is developing the Autism Trust USA, modeled on The Autism Trust (U.K.) and focused on the creation of new campus communities where adults with autism can work, live and improve their skills and talents in a creative and supportive environment.

The Thinking Moms Revolution. Because TMR Knows There's No Such Thing as TMI.

Cropped-tmrlogo1
Thinking Moms' Revolution

What began as a collective journey

Of stories across the globe

From Autism to recovery, and with whatever happens in between

A tight-knit group of parents were drawn to support each other

Traveling the Autism journey

While learning, identifying, laughing, crying, celebrating – experiencing a full spectrum of life and emotions

Creating a Revolution along the way

Not for the weak

Always with hope in sight

We walk together

And invite you to join us to do the same.

At almost 1,000 fans strong in less than two weeks of being on the web, a group of dedicated Moms (and token Dad) have joined the autism blogosphere.

The Thinking Moms’ Revolution is the voice of twenty-five contributors. They are feeding the cause with inspiring, interesting and entertaining blog posts and Facebook conversations. 

TMR would like to extend the invitation to you to connect with them.  You can see the blog at www.thinkingmomsrevolution.com, tweet with the group @thinkingmomsrev

and stay up-to-date with conversations on their Facebook page. https://www.facebook.com/thinkingmomsrevolution.

The Thinkers of TMR are walking a well-worn path created by others who have been their guides.  They, like many other parents are on a mission for their children.  Join The Thinking Moms' Revolution as they work toward a future full of hope.