THE BUTTERFLY EFFECT: A Tribute to JoAnne Pike - by Lori McIlwain

From Lori McIlwain, National Autism Association

THE BUTTERFLY EFFECT
A Tribute to JoAnne Pike

I believe that to be a leader, you must have more hope in your heart than fear. Fear won’t allow you to take a stand without reluctance, or speak without anticipated rejection. It won’t give you an original point of view, or allow you to remain unapologetic. It will only make you believe that change is too difficult, and that no human life is valuable enough to initiate it.

Jo Pike never had fear in her heart, only hope.

The only way I know how to write about Jo is through my own perspective based on experiences that I know and understand. It’s my hope that in writing this tribute, I not only communicate just how strong she was, but how the determination of just one person can have a gradual, widespread effect.

I’ll acknowledge upfront that whenever people we love leave this earth, it’s difficult to do anything but champion them. They were perfect. They did no wrong. They were extraordinary. Like anyone, Jo was far from perfect, so I won’t pretend otherwise. But unlike most, she was absolutely extraordinary.

March 4, 2010
Lori, I have given it up to God and know that no matter what happens, it is his will. Love you, Jo
JoAnne Pike was born in Fairfield, Maine in 1966. A military wife, she moved around quite a bit until she ended up in Marion, South Carolina, where she lived with her husband, Greg and their four children, Matt, Aaron, Hunter, and Taylor. She officially became a part of the autism community on Valentine’s Day, 2000, when Hunter was diagnosed with autism.

October 2005
It’s not that I didn’t know something might be wrong before that date but to hear that official diagnosis made it all so real. ‘Autism,’ a word that we hoped we’d never hear. There was no denying it any longer. How could my two-year-old son have a diagnosis that we were told time after time was hopeless. Words like institution, aggression, no cure were everywhere we looked. - Jo Pike
My son Connor was diagnosed not long after Hunter, and by 2002, Jo and I were parallel posters on autism discussion boards. For a good year I had studied research, treatment options and just about every trick other parents had up their sleeves. Like many moms, I saw changes in my child after his immunizations and I was looking for ways to reverse those effects. And like others, I had a lot of questions. It wasn’t something I would let go. Jo’s posts, as I came to notice, showed that she wasn’t letting go either. She demonstrated enthusiasm, ambition and drive, not only to help her son, but in getting answers about the autism-vaccine connection. She was what I considered a “let’s do” sort. Let’s do this. Let’s do that. Let’s not give up on our kids. Let’s get the research. Let’s stop talking and do.

May 2002
I was told by doctors that my son had no hope that I should just take him home and love him and just plan on him being in an institution and that wasn't acceptable. That's not acceptable to me. I will find a way, and there is a way, and we are going to find it, and the research will tell everything. - Jo Pike
When Jo posted an energetic message asking parents to come together to place a full-page ad in a national publication about the autism-vaccine connection, I wrote with an apprehensive offer to help. I loved the idea of mass awareness of the issue. At the same time I knew there would be a good amount of grief involved in executing an ad like that.

Jo’s reply was almost instantaneous. What I remember most about her at that time was her ability to do the opposite of what I expected. Here was a mom with passion and ideas, which typically leaves room for little compromise. But to my amazement, she was flexible. She had no sense of ownership. She was willing to listen instead of tell. She’d encourage participation from everyone around her and championed his or her ideas. It was a “you before me” attitude. Give and take. She made it easy for people to work together, and want to work with her.

July 2002
This full-page ad will educate the public about how environmental toxins are affecting the world's children. Its message will also appeal to senators and congressmen who can help our children today and in the future. - Jo Pike

Using the Internet, Jo and I began reaching out to parents. It was nonstop posting from morning until evening asking everyone who had an affected child to donate a dollar. Several organizations stepped in to help and we found ourselves surrounded by enthusiastic parents who were tired of being accused of blaming others for their child’s autism. To us, we were simply relaying the patterns we saw. Our children regressed after vaccines. Vaccines contained mercury. We found high mercury levels in our children. It wasn’t about blame or money or emotion, it was about speaking honestly for the sake of getting honest answers.

Several intense days went by as Jo and I maintained around-the-clock contact through email and discussion boards. It was as if overnight we had become activists who were willing to speak very loudly without any sort of reluctance. We’d receive emails that were encouraging, and an equal amount from those insulted by our donation requests. Jo never batted an eyelash at the discouragement. “Just gotta keep moving.”

After about a week of writing back and forth, she decided to call. “It’s Jo. It’s just easier to do this over the phone.” Aw, man. I intended this to be a strictly electronic relationship. One project and done. I was quick to insert a disclaimer: “Listen, I just want to help out where I can and leave it at that. I’m not here to make friends.” Jo laughed. “Okay, I promise I won’t be your friend.”

March 17, 2010
You've seen to my every need, you've cheered me up just when I needed it most, and have stood by me through everything. I love you my friend.

It took months to raise the money. But despite major bumps in the road, we were able to place several full-page ads in Washington publications with the help of parent donations and April Oakes of The Autism Autoimmunity Project. The campaign targeted a senator from Tennessee who, throughout 2002, became increasingly outspoken about the autism-mercury connection. Senate Majority Leader Bill Frist called parents’ claims about vaccine injury a “frivolous” attempt to swindle money from drug companies. He introduced legislative language that offered protection to vaccine-makers who used the mercury-based preservative Thimerosal in their products.

Jo and I began asking the same two questions. One: Why they would need protection if mercury were safe? And two: Why would the Government take away any American’s right to due process, let alone a child’s?

By summer of 2002, Jo began creating her own group called Moms on a Mission for Autism, or MoMA for short. She had worked on an organizational model with fellow moms Adrienne Britt-Rousseau (Levesque) and Barb Roth. Jo often called me with ambitious plans for her organization and a long-term vision that would the change world of autism. “We’ll have programs, we’ll spread awareness, we’ll have an autism conference and we’ll raise money for research.” I was all for those things, but I never wanted to build an organization. The politics. The fluffy titles. I hated the acronym “MoMA” and I didn’t want my picture or “bio” anywhere. I was always unforgivably honest with Jo. Sometimes she’d agree – other times she’d tell me I was wrong. Either way, it was always okay.

Since I could never say no to Jo, I produced a logo for her, created a lousy design for the web site, and wrote some copy, but that was as far as I was willing to go. She laughed when she called to say that she placed my picture and bio on the site and gave me a title. I sighed and moaned. “Mom, make her stop.” Despite my best efforts to stay in the background, Jo always put me in front. Even in front of her.

In November of 2002, Jo called in the morning hours with a feisty determination in her voice. “We need to have a rally in Washington.” Language from Senator Frist’s vaccine liability bill had been anonymously added to a very large bill -- The Homeland Security Act. Jo wanted to go after a repeal of the “Lilly Rider” as it was later named since it protected Eli Lilly especially. She started to sell me on the idea, but there was no need. I was in.

We worked with Adrienne and April Oakes, along with seasoned advocates including Laura & Scott Bono. The Bonos lived 20 minutes from me, and I had read about their years of advocacy. Laura, a marketing veteran, was right up our alley. She was smart, strong, and a dedicated mom. I called Jo and said, “She’s a doer.” At some point I told her, “She’s one of those ‘suck it up and do it’ types.” Jo loved that especially, and through the years we often found ourselves saying it to one another on a bad day. “Suck it up.”

With Laura’s help, we packed a good media punch. We named the rally “Know the Cause, Find the Cure” and Jo dubbed us moms on a mission as she gathered people to help her recruit parents to attend.

November 2002
The provision has been resurrected and become law, as part of the domestic security legislation signed on Monday by President Bush. Yet in a city where politicians have perfected the art of claiming credit for deeds large and small, not a single member of Congress - or the Bush administration - will admit to being the author of the Lilly rider. - Sheryl Gay Stolberg, New York Times
Despite all of the warnings that a repeal would be impossible, we continued pushing forward full force through Christmas. I filed the rally permit papers and worked with Laura to line up speakers. Senator Debbie Stabenow, Senator Patrick Leahy, and Congressmen Dennis Kucinich and Dan Burton agreed to attend. On the morning of January 8th, 2003, we arrived at Upper Senate Park to assemble the podium and seating. All bundled in black, Jo went from folding chair to folding chair adhering signs to the backs of each. The signs read the names of families who couldn’t attend. She gave me a glare every time she caught me socializing. I returned it every time I caught her doing the same. We had this sort of guilt-ridden pressure we put on one another – “I’m working harder than you.” I’d always lose that competition. Jo worked harder than anyone.

Crowds of parents trickled in with their homemade protest signs. Media networks and a slew of local affiliates arrived with their camera gear. Parents began introducing themselves, reading one another’s signs, some even helped set up tables and serve coffee. I’ll never forget when a mom walked up to complement Jo. She explained she had pictured Jo very wealthy with a nanny at home. Jo laughed. The mom didn’t understand, as she put it, how “regular moms” could pull off a rally with a good chunk of media and Congressional presence. “Just a phone and a computer,” said Jo.

That same mother went on to form her own organization, and other parents who attended formed three more. So much passion built from that day, and two days later, Jo got her wish.

January 2003
Looks like we got the repeal. Senator Stabenow's office called this “a great victory.” Stabenow said, “I thank these parents, who fanned out across Capitol Hill after our rally to knock on the doors of members of Congress, for their commitment and hard work, and I thank my colleagues for moving to eliminate these unjust provisions.” - Jo Pike

Jo continued to promote her organization, MoMA, and in March 2003 began planning a formal dinner at the Autism One Conference to honor Congressman Dan Burton. “Let’s do a variety show!” this meant a lot of work for me: invitations, programs, press releases. Remember the Looney Toons characters Spike the Bulldog and Chester the Terrier? One was the prickly, party-pooping pessimist, and one bounced up and down with a perky outlook and energetic optimism. Clearly, Jo was Chester. She loved variety shows, plays, comic relief, and always managed get the Spikes of the world fired up.

May 2003
This is our way of giving something back. . .The event itself is appropriately named “Rebel with a Cause” and guests are asked to appear in 50's and 60's wear for kicks. It's all going to be in good fun. There will be parody performances by Bob Marley, The Blues Brothers, and Simon and Garfunkel will serve as laugh-your-troubles-away entertainment. – Jo Pike

During that same conference, Jo wanted to host a Candlelight Vigil for parents. They would be able to come together, share stories, connect. “It’ll be sappy,” I objected. “Everyone will be crying – I don’t see how it will help the community.” She asked, “Will you design the candles?” Absolutely.

July 2010
I will always think of Jo. She made a candle with my son's name for an NAA Conference, for a candlelight vigil for children with Autism, we still have that candle. - A fellow mom
Throughout the rest of 2003, we fought every new piece of vaccine legislation Senator Frist introduced. In one particular meeting at a well-known senator’s office, a staffer confided in us that the Senator wasn’t thrilled with a couple of organizational names we included on action alerts and in ad campaigns. I believe the exact quote was, “What’s up with some of these names?” He wasn’t referring to MoMA, but it did prompt me to beg her to change the name to something that would demonstrate strength and size. She called sometime after that asking, “So what do you think? National Autism Association?”

The original National Autism Association logo was a pretty little butterfly. Jo loved butterflies. To her, our children were stuck in a cocoon, and it was our job to help them be free to fly wherever they wanted to go – she wanted butterflies on everything. I worried the logo was too feminine and that the good old boys in Washington wouldn’t take it seriously. “You just don’t have any faith in me,” Jo said. My heart sank. What was meant as a way to challenge her was interpreted as doubt. I had enormous faith in Jo’s ability but felt like she was thinking small. “If you act big, Jo, you’ll be big.” “It doesn’t matter what I do,” she said. “You’ll always have one foot out the door.” I didn’t disagree.

June 2010
I always did have faith in you, Jo, and always will.

Jo assembled a strong group of parents to start NAA, including friend Adrienne and fellow mom Christine Heeren. Around this time Jo met Wendy Fournier, a fellow mom from Portsmouth, Rhode Island, who owned a web design business. Wendy agreed to donate a few hours towards building a website, but ended up being a driving force behind NAA’s overall development. That was the thing with Jo. She made people want to stick around.

July 2004
The National Autism Association was founded by parents of children with autism and related disorders. Our primary goal is to help families immediately and help fund research immediately. - Jo Pike

Advocates Laura Bono and Lyn Redwood joined to help build a powerful board of directors and share in the vision that became NAA. I somehow ended up as Executive Director and often objected to the role. I’d gripe. She’d laugh. Business cards would show up on my doorstep. Admittedly, I never took the role seriously. It wasn’t because I didn’t believe in Jo. I had personal hang-ups of my own. Gaining friendships, titles and receiving a lot of thank-yous was something I wasn’t entirely comfortable with. But Jo looked at it differently, and the truth is, we all knew we had something pretty special on our hands – something that gave us a new platform to advocate and make immediate progress.
Jo grew NAA to cover every aspect of autism. She hosted medicine and research panels, she laid the groundwork for new programs, she enabled us to have a larger presence in Washington, and she made sure we stayed out in front of the public to spread awareness.

The only part of the plan she hadn’t tackled yet was an autism conference.

November 2005
“Good morning and welcome the first annual National Autism Conference. My name is Jo Pike. . .”
In everything Jo did, she believed in the absolute best outcome and she believed our children would be able to live the very best lives. She never once doubted any of it, even when she felt discouraged by me or anyone else. When she asked me to pick a theme for the conference, I chose the word I felt best embodied her way of thinking.

November 2005
“. . .the theme chosen for this particular conference can be summed up in one word: believe. As parents, we will never give up believing that someday, somehow, there will be that one breakthrough that will help all of our children. No guessing. No puzzle pieces. No resistance. Belief is more powerful than fear, than defeat, than hopelessness, than apathy. It is what will push us forward to provide the opportunity for our children to live to their fullest potential. It will not allow us to make compromises on behalf of human life. And it will constantly remind us that it is our job, our sacrifice, that will open the door so they walk right through.” - Jo Pike

I missed her welcome speech, but my husband and I were able to make it to the conference in the late evening hours for a private dinner. One of my favorite moments is when we walked to the door with no registration badge. A volunteer wearing a t-shirt that read “Believe” stopped us. “Sorry this is private.” Jo stuck her head up through a crowd and waved for us to come inside. After we didn’t, she broke through a few people and walked up. “What are you doing?” I gestured to the bouncer. “They don’t have tickets,” he told her. Jo laughed as she grabbed my hand and yanked me in. “She’s good.”
Parents made comments about how the conference was so full of hope, life and possibility. That was Jo. It was amazing to see how many were impacted by this particular “Let’s do” of hers. Speakers remarked about how it was the best conference they’d been to, and board members were ready to start planning the next one. It was a huge success. Unfortunately, it came with steep consequences. As flexible and easy-going as Jo was with ideas and relationships, she was notoriously stubborn accepting help when it came to the actual workload. She figured that in the time it took to ask for help, she could have already done it herself. The person who always had so much energy, drive and enthusiasm, seemingly ran out of gas after the conference. She sent an email a few weeks later explaining just how tired she was. Jo had been tired before, and who wouldn’t be? “Suck it up,” was the typical go-to response. But this time she wrote it to the entire board of directors.

December 2005
I founded the National Autism Association and through an obsession that only other parents/caregivers of children with autism can understand, it’s become a force to be reckoned with but it’s taken its toll. I will be stepping down as Executive Director on December 31, 2005. I’ve enjoyed so many years working beside all of you. – Jo Pike

I was mad at her. She was Chester. She was the cheerleader. She made everyone want to get out of their seats and do something. She was the heart and life of the organization. “Write them back and tell them you’re having a bad day,” I barked. I threw a lot of things in her face that she threw at me in the past. “Think about the organization. Think about the community.” It was all a little too late. There was no going back.

I remember writing her afterwards with no talk of autism, just friendship. From day one, we had fought like cats and dogs. We were both so stubborn, but we were unconditional. The person who laughed at my disclaimer in the beginning had ended up not only becoming my friend, but the sincerest kind.
Through the years we stayed in touch, mainly about autism protocols and family updates. Every once in a while I’d forward her a thank-you letter from a parent who had received an NAA grant to remind Jo how many children and families she helped. She went to work for the Red Cross and became more involved with the church – something she really loved.

June 2007
I feel like this job was made just for me. I really love it, and the people I work with. I was asked to sit on one of my local congressman's boards. I'm still in burn out mode though, and just want a normal life for a while. Love, Jo

There were a lot of reasons Jo began the autism fight. For starters, she was willing, but she also had a deep sense of duty towards God and the greater good. She did it for Hunter, and she did it because she believed that anything was possible – a line that NAA still uses often. But when she was diagnosed with cancer, she fought for no one else but her family, and she was more determined and more full of faith than anyone I’ve ever seen.

It was difficult to believe Jo had cancer. It wasn’t real until she shared details about the mass and its size. Jo was rarely sick and uncommonly strong. Too, she never complained. I called Greg to make sense of it. I couldn’t call her, I was a weepy mess and Jo’s the type who needs a lot of “Let’s do” all around her and zero doubt. By the time I did talk to her, I said, “Now’s not the time to be stubborn.”

March 10 2010
You'll show the way, you always do, Jo -- you tackle the things most wouldn't consider doable and you don't think about doing it, you just do it. It's a rare trait, but you've got it so that's why you're being handed this test and you'll overcome it. Love, Lori

The doctors waited several weeks to share any indication of a problem, but when they finally diagnosed Jo with stage IV cancer, the doctor wrote down “untreatable.” That only made her more determined. “They don’t know me.”

NAA Board members and officers spent days researching every possible option. Jo was not at all stubborn about accepting help and was willing to try anything – traditional, alternative, you name it. We went in together to send her supplements, water filters, healing CD’s, the best air purifier on the market. Board members used their medical contacts, sorted through studies, made phone calls – I’ve never seen a group of people come together so quickly. Dr. Julie Buckley began working with her. Jo was so grateful and very disciplined. After she received studies about the positive effects of asparagus, she ate it for weeks straight. Pureed. “I can’t believe babies have to eat this stuff, I’m so sorry for putting my kids through that.”

There was never an “I can’t believe this is happening,” or a “Why me.” The leader inside her had more hope in her heart than fear, and she showed little reluctance in going after that miracle. “God is leading the way,” is what she said almost daily, and the only thing she continued to ask for were prayers. Between her family and friends, her church, and all of the lives she touched within the autism community, there were prayer chains for Jo around the world.

March 9 2010
Most important are the prayers. They are so powerful, and that is why everything is falling into place. Love, Jo

Even when imaging indicated that the cancer was spreading, Jo maintained fierce determination and a positive outlook every day. She used words like “wonderful” to describe her doctors, and the word “hopeful” was something she said regularly. She told her sister, Amy, “You guys are going to be blown away with what God is going to do!” She rarely complained about the pain. Even when she mentioned it, the context was positive. “It was great to see my sisters, they took my mind off the pain!”

April 6 2010
I believe in miracles. :) Love, Jo

Jo was so happy to have her mom with her, and she continued to work at the Red Cross while undergoing chemotherapy every third Thursday starting in May. We all worried about the effects of chemo, but she never once complained about any of it. She was tired, that was about the extent of it, and she continued to say she was fine. But by mid-June, it was clear that her doctor had stopped thinking in terms of treatment when she told Jo to start eating anything she wanted. She had given Jo only a matter of days, or weeks, but you wouldn’t know it by Jo’s attitude.

June 19 2010
I feel like kicking butt!

She was admitted to the hospital at the end of June and her sister Amy traveled down from Maine. Christian and I drove in as well. When we walked into her hospital room, I saw that smiling face. She was frail, but her spirit lit up the room. I cried into her shoulder. “You hold me as long as you want.”
Greg called a few days later. He put Jo on the phone. Her voice was weak, but her spirit was strong as ever. She told me how great God was, and how angels were all around. She echoed phrases . . .”I am healed”. . .”don’t ever stop”. . .”just keep going”. . .”just keep fighting.” Her voice lowered when she told me her angel was there in the room, too. I sobbed on my bedroom floor repeating that I loved her, and that our kids would be okay.

Jo passed away the evening of July 9, 2010. She was 44 years old.

Being unconditional can turn a friend into a lifelong friend. Someone who comforts you, challenges you, and loves you even when they hate you. No matter what you say, no matter what mistake you make, they’ll never give up on you. I never wanted to be Jo’s friend because my son was given a diagnosis that inhibits his ability to make a friend. I didn’t want what he couldn’t have, but she made me look at it differently. Don’t be sad about what he might not have. Go fight for him to have it.
Jo led the way in repealing an unfair provision in one of the most notorious pieces of legislation in history, she started a national organization, she made it so hundreds of thousands of dollars went directly to families, she started the National Autism Conference now in its fifth year, and she was an original warrior mom who led the charge to advocate for our children.

Does the flap of a butterfly’s wings cause a widespread effect?

Jo loved her butterflies, and to this day you’ll catch them here and there on NAA materials. For her they represented freedom, change, hope. Like I said, she was extraordinary. She showed us that the most ordinary people can create the most brilliant butterfly effect as long as they have more hope in their heart than fear. And maybe a phone and a computer.

Four days after she passed, Christian and I were sitting outside a restaurant having lunch. I wondered aloud if I had the strength to keep fighting the good fight. It’s been a long road from that first phone call in 2002. I was tired, too. Suddenly, the biggest butterfly I’ve ever seen fluttered past our heads with so much energy. It disappeared over a nearby wall, and all we could do was stare at each other in knowing silence. As Jo would say with a wry smile, “Time to suck it up.”

We live in a world in which we need to share responsibility. It's easy to say "It's not my child, not my community, not my world, not my problem." Then there are those who see the need and respond. I consider those people my heroes. — Fred Rogers