Running FOR Autism, not AGAINST it. Why we don't support Run The Dream

So, there's this guy..... who wants to run across Canada... (Okay, as the mother of a guy who wanted to run across his Province, I can relate...) So, he goes looking for a "cause" to raise awareness about and funds for, while he runs. His research brings him to Autism (or, more precisely, ASD - "Autism Spectrum Disorders"). Again, I can relate. Our Autism Celebration Run was about fulfilling Alex's dream to run across Prince Edward Island, to raise awareness about Autism (ASD) and to raise funds to benefit our Island's autistics .

The similarities between Alex's "Autistic Celebration Run" and Jonathon Howard's "Run The Dream" Run appear to end there. Alex ran FOR Autism, Mr. Howard is running AGAINST Autism.

Mr. Howard, while admitting his life is untouched by autism, is out to inform "Canadians who have been spared the burden of dealing with Autism" that autistics are a "burden for the rest of their lives" to our parents, family members, teachers and social support groups. He wants to "promote a unified and effective approach in Canada to dealing with Autism, and ultimately preventing it or finding a cure."

It appears obvious from those sentiments that when he decided to pick autism as his cause he decided not to talk to autistics about it. In fact, my email to him, CC'd to every one of his Team members, has gone unanswered. Meanwhile, two different Provincial Autism Societies have cooperated to get a message to Alex asking if he's like to join Mr. Howard on his run when he's on PEI.

"Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing?" I asked. Again, no reply.

Despite its claim that "We promote public understanding and acceptance of people with Autism", my Provincial Autism Society is supporting Mr. Howard and is planning a "Meet & Greet" for him. Yes, the PEI Autism Society donated $500. to The Autistic Celebration Run. We've thanked them before and I thank them again. As well as directly benefiting from Dennis Debbaudt's Autism Safety Training Seminar , the parents who make up the PEI Autism Society can take comfort in the fact that PEI's Law Enforcement Agencies, First Responders, Medical & School personnel and Early Childhood Educators were also trained in Autism Safety, Recognition & Response . This education remains ongoing in Police Departments, at the Police Academy, The Firefighter Training Academy and Holland College Paramedic courses etc, etc. The only meeting & greeting that happened with PEI Autism Society Executive was not during Alex's 14 day run, despite numerous invitations, but occurred, informally, when members of the Executive Board and others attended the free Autism Safety Training Seminar we presented with Dennis Debbaudt. We did meet a couple of people from the autism community who had read about us during the Run but contrast that to the outstanding support we got, monetarily & morally, from the Running community.

As well as the three free Safety Training Seminars, resources, in the form of training videos, picture communication cards and autism wallet cards were put in the hands, vehicles, detachments and trainers of PEI's Law Enforcement & First Responders. Every school age autistic child on PEI was given a wallet card as well.

Thanks to PEI's media - CBC Radio & TV, The Western Graphic , The Journal Pioneer, The Guardian and The Eastern Graphic (a number of times), good, positive, awareness about autism was spread across PEI.

Our message and purpose was discussed, throughout the entire planning stage, with a good number of autistic individuals. We also talked to parents and family members. Our message of highlighting ability, while recognizing disability, of demonstrating potential, and discussing appropriate supports, services & education, was supported by the autistic population.

Mr. Howard's message, that we are a lifelong burden and should ultimately be cured and prevented from being, while it may be shared by some big parent & professional run Autism Organizations, is not supported by Alex & I nor by any autistic individuals we know. This kind of social stigmatizing will do none of us any good. As well, his contention that autistics are a burden is simply not true.

If there is a single member of The PEI RoadRunners Club who believes Alex is a burden, please seek me out at the next run you're at and tell me that. I genuinely want to try to understand your reasoning. And, if you believe we are all such a burden, explain why your Club's executive saw fit to honour Alex with an award for Inspiring fellow members and me with an award, acknowledging my helpful, voluntary, contributions. If you honestly believe that people like Alex & I should be prevented from being, please inform and enlighten me. That is absolutely not the impression the PEI RoadRunner's membership has given me these past 4 years.

If you feel a need to support someone running for autism, and you want to keep the funds on PEI and benefits autistics, The Runman Fund is still open. (If you want to fund an autistic-friendly National or International organization, ask me, I can recommend a few). Write a cheque to "The Runman Fund" and take or send it to The PEI Council of the Disabled. I promise you it will be put to good use. Although every Police vehicle and Ambulance has a picture communication card, our extra funds ran out after supplying only one of every three Fire Department vehicles. We would very much like to supply the other 2/3 as well as the schools and medical personnel who have requested them. Still, what we accomplished was well beyond what we had hoped to. Alex fulfilled his dream of running across PEI, we raised awareness, our message was heard far beyond just PEI and inspired others, we brought Dennis Debbaudt to PEI and presented 3 free Autism Safety, Recognition & Response Training Seminars and had money left over to put resources in the hands of the people who should have them.

We do not support Mr. Howard's "Run The Dream". Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing? Would you support someone who felt that way about you? As much as I wanted to like and support this guy who wants to run across Canada in the name of autism, I cannot support his harmful message.

If you ever ran behind Alex prior to August 2006, you might have read the message on the back of his T-Shirt, it's the same message that's on the bottom of every race post he blogs -

If you didn't understand his meaning before, I hope you do now.

I also hope you care enough to listen to autistics speak about autism.

As a postscript, yesterday Karen McCarron was sentenced to serve 36 years in prison for murdering her autistic daughter Katie. What was the message Karen McCarron got that caused her to so want a life without autism that three year old Katie paid the ultimate price? Mike McCarron, Katie McCarron's grandfather, felt abandoned, offended and betrayed by "advocates" parading their "horror stories" about autism. Paul McCarron, Katie's father had a message of his own upon hearing the guilty verdict -

"I ask all parents especially those of children with disabilities to ALWAYS
love your children and be proud of them.
Cherish every moment you have with them.
Love, patience and tender efforts are the best therapies."

That is a message worth sharing.

~*~

Today is the United Nations declared World Autism Day.
Some things done in the name of Autism Awareness can, in fact, be quite harmful to autistics. Listen to the message. Do you actually believe it? Does it help autistic people? Would you repeat that message to our face?
Would you want it said about yourself and/or your loved ones?
Be aware.

Some comments from the Autistic/Autism Community:

• Autism Awareness Month Link of the Day: Tokenism
• Runman: Running FOR Autism, not AGAINST it
• "Why we don't support Run the Dream"
• Running FOR Autism, not AGAINST it.

Truth and Justice

Karen McCarron
Guilty on all counts

"Almost all of her statements are how the autism affected her, not Katie.
This is not a delusion or psychotic."
Dr. Terry Killian

Public Statement

If the measure of a person's life could be quantified by the number of people that loved them, then Katie, in her brief 3 1/2 years, achieved well beyond all of us.

I'd like to recognize the tireless efforts and personal sacrifices of the States Attorney's Office, specifically Kirk Schoenbein and Kevin Johnson, and the Morton Police Department, specifically Ray Ham and Bill Roth, for the relentless pursuit of the truth and justice. We are blessed to have these caring and professional people in our community.

I'd like to thank all the people that worked with Katie. Specifically, Kia Quick and Stephanie Blair - your ability to make Katie smile while you taught her is a testament to your talent and love.

I ask all parents and especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies.

Paul McCarron

"Love, patience and tender efforts are the best therapies."

The picture in the photo above is "It Shouldn't Hurt to be a Child" from Victims of Violence

Here are some posts by members of the autism community.

Kristina at Autism Vox has written a number of posts on Katie's murder and Karen's trial and put together this list

Ari Ne’eman, President of the Autistic Self-Advocacy Network, on phony ransom notes can have real consequences in Talking Justice

Niksmom at Maternal Instincts writes that words cannot do justice and posts again after the verdict.

Kev at Left Brain / Right Brain posts Dear Katie

Liz at I Speak of Dreams posts, with sorrow and tears.

SL at Stop. Think. Autism calls shame on the media (again) and dedicates this post to Katie.

Brett at 29 Marbles references a post he wrote back in May of 2006 while we wait; this is his post after the verdict.

Ed posts a short video remembering Katie.

Rose at Hard Won Wisdom entitles her post AutismSpeaks: Katie McCarron’s Death.

Whose Planet Is It Anyway? posts a poem remembering Katie.

Mike Stanton at Action for Autism writes about a just verdict.

Steve D at One Dad’s Opinion writes this post for Katie and her family.

GFCF Mommy posts nothing’s going to change my world.

Go to AspergerSquare8 to see a beautiful square garden (pink) .

Andrea posts for children now gone.

Maddy at Whitterer on Autism writes about Katie McCarron—-theft of joy.

Club 166 reminds us Primum non nocere.

Kyra at This Mom on The Verdict.

Gretchen’s post is called empty-handed.

Autismville posts for Katie McCarron

Sharon at The Family Voyage posts about Katie.

For Katie, Never Forgotten is by Kassiane

Katie McCarron...

For 2 weeks, in July of 2006, I picked flowers every day for a little girl I never met, who at 3, died far too young, simply because she was autistic. It was the 2 weeks of Alex's "Autistic Celebration Run" and every day, as I accompanied Alex across Prince Edward Island on my bike, I picked flowers along the way for Katie and put them in a loop in my detachable handlebar bag.

Again these days my thoughts are with Katie. They are with her father and
grandparents who so adored her, with her sister....

Katie's mother, Karen McCarron, is currently on trial for Katie's murder.

Karen McCarron is charged with 4 counts, two of which are 1st degree murder.
She is also charged with obstructing justice, and concealing a homicide.

"I hated the autism so, so much," McCarron said.
... I just wanted autism out of my life."

Back in June 2006, Katie's grandfather, Mike McCarron, offered us the following insight into Katie's short life on Autism Vox's blog :

"I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I must apologize for the length of this post, please know that I keep each of you in my prayers."

Katie's Memorial Grove

Trees For Life, Restoring the Caledonian Forest

• Photos of Katie McCarron
• In loving memory: katie mccarron
• Katie McCarron - by Kevin Leitch.
• Katie McCarron, Charles-Antoine Blais, real children, real people.
• Speaking Truth to Power - by ABFH
• Mike Stanton - For Mike and Katie McCarron