By Cathy Jameson
That one time of the year that I’m drawn to leave the comfort of my home is when I head to Chicago for the annual Autism One Generation Rescue conference. As much as it would be easier to stay at my house to manage my family’s needs, I walk away from them and every responsibility I have. I gingerly tiptoe away from Ronan and my all-consuming thoughts I have about his special needs. I leave to surround myself with hundreds of strangers who share the same story I do. It’s the chance for several groups and many individuals in the autism is treatable community to come together. Many of us have a strong desire to continue to learn about autism even years after the initial diagnosis. This conference helps us to stay knowledgeable about autism and to understand its future implications for our child and for our family.
One of the biggest reasons I like to attend the AutismOne conference besides having a quick break from life is that it reaches beyond a simple layer of autism awareness. Instead, this conference offers a several days’ worth of autism action. That is very apparent when looking at the many speakers lined up to deliver talks that cover many topics in the field. Those topics include how to reduce problematic behaviors, how to introduce and maintain dietary intervention as well as how to manage sensory issues are just a few of the helpful topics. Some speakers go behind the science of what autism is and then go beyond what autism can do to an individual, their family and their community. As I scan through the titles of the presentations, I’m reminded that I don’t know everything my son and I will face in his future. I feel like I have so much to catch up on and understand. I also want to renew my outlook on Ronan’s life and feel that being at AutismOne can help me with that. I can see how my life has changed because of what I already do know about Ronan but as with anything in life it takes effort to keep moving forward. As I circle the presentations of what I want to attend in my conference guide book, I make a new mental game plan to once again continue to work hard (if not harder) for Ronan.
Presentations include autism basics (what causes it, what it is, how it’s diagnosed). More detailed topics include how to treat the symptoms of autism (certain therapies, specific interventions and finding providers and/or treatments centers). Another layer of lectures goes down different avenues and are as equally important (legal tracts on special education and vaccine injury; first responder training; current autism research and of course, next steps for the autism community).
With Sargent Goodchild from Active Healing after his dynamic presentation (L-R, Heather McLennand, Cat, Sarge, Allison Chapman)
While at the conference I soak in the respite of being away and then immerse myself in as many of the presentations as I can. After a few talks, I feel like I’m back in college cramming for a final exam--I simply must learn everything. I take as many notes as I can scratch out on a notepad. My hand starts to cramp as I write down key words or phrases to later look up. In the back of my head I wonder if I missed something in my earlier research about Ronan, about vaccine injury or about autism so long ago. There are only a few moments to dwell on those What Ifs so I continue to take notes and get ready to move onto the next speech or event.
Once I’m out of the mind-numbing presentations I think to myself not only do I feel like I must I learn everything, I must be able to apply it for my son’s specific needs once I return home. Depending on which tract I am following, some of the presentations I sit through bring me to my knees in emotional agony. I feel waves of sadness, regret, horror, disgust and then the worst of all emotions: fear. Wendy Fournier of the National Autism Association gave a very moving presentation about wandering which hit home for me because Ronan has wandered into dangerous situations before. I can’t remember how many times I cried during her talk but it was enough to turn my sadness and fear into anger. I was angry as to why this all happened to Ronan in the first place. I was angry at why it takes so long to get things done to give Ronan the chance to succeed. I was angry at why we parents continue to have to fight so hard for our kids. I know I’m not the only one who has had a plea for help fall on deaf ears time and time again. That simple request for help later becomes an unnecessary full-on battle. At one point during her talk, Wendy said, “We need help.” That statement wasn’t addressed to the parents in the audience but out to the communities we live. Work needs to be done to ensure proper care for our children, and it’s needs to be a group effort to find that help. AutismOne is a place to gather some of those people who give directly back to the families like mine. Because so many groups are represented during the conference, I appreciate that chance to say go up to them, to say hello, to share Ronan’s story and to say thank you.
Putting the heavy emotions behind me after Wendy’s talk was hard because AutismOne is full of reality. Most of Ronan’s care is a struggle. He makes great progress and I’m thankful, but it’s slow going, sometimes painful and not always consistent. Not only do I have to balance his emotions which includes frustration because he is so determined yet falls behind, I have to remember to keep my emotions in check. If I’m not physically, mentally or spiritually strong, I can’t fully provide for him. Fortunately, other presentations at the conference do draw out positive and refreshing emotions. I listened to people who have discovered the road to recovery. I hear that in the corridors as I listened to people share their own child’s success—school success gained by following a certain therapy. GI healing success as they are now able to eat typical foods. Physical success as their child is finally able to participate in group sports or able to hang out with typical peers. Knowing that other people have pushed through troubling symptoms gives me hope that Ronan can also find his own successes as he recovers.
One thing I found most inspirational while I was away was when I heard some people realize their child was farther on the journey to recovery than they previous thought. They discovered this after attending a few days of the presentation and recognized that the intense signs, symptoms and issues of autism no longer related to their child. I long for that feeling and am so very thankful that their years’ worth of work for their child brought them to their current healthy status. Other attendees I ran into are on their last leg of what has been a long journey to being recovered. How great that their child is more stable, healthy and typical again!
Being able to relax for part of the trip is a must. Going to Chicago gives me a chance to get away from the daily reminders of what is and isn’t working for Ronan. I can step out of my head, relieve myself of my daily worries and then refresh myself to return home with renewed hope. I enjoy mingling in the hallways in the main hotel lobby as conference goers pass from one presentation to the next. A constant buzz of excitement fills the air as does learning, networking and socializing. Part of all of us being in one place at the same time reminds us that we have the same desires—that is to help our children be successful, healthy and accepted and, to make it easier for the next family who finds themselves with a child on the autism spectrum.
My purse is prettier than your purse.
The entire weekend is full of helpful talks, resourceful exhibits and it includes a wide range of emotion. Special events are scheduled to remind us that we too need to take care of ourselves in the midst of caring for our family. One of the biggest reminders that I am still me is when I meet up with old friends I’ve met while walking with Ronan on this journey. Those friends help me during the year when I back home feeling miles and miles away from AutismOne. As I struggle to understand another problem my son has to overcome, I call upon my team of friends to give advice, ot offer a shoulder to cry on or an ear to listen. The closeness we feel even miles and miles away or behind a computer screen as we email, Skype or Facebook together is made even closer when we meet up in Chicago. This is a highlight that I look forward to when I start my countdown a few weeks to the conference. It also reminds me of how I much I look forward to the feeling of a big family reunion. We are family. We come together as a unit. As the AutismOne conference wraps up I wish I could rewind the clock just a few hours so I can make sure I can see, hear, meet or grab one of everything and everyone.
Cat and her best buddy Dr. Sarah Stockwell, Ph.D. reconnecting again.
It's a huge rush to get to Chicago and then as equally huge of a race to get home. Upon departure from the long weekend many are thinking about everyone they left behind at home: spouses, children-both typical and affected, caregivers and relatives. All have pitched in to make our getaway a success. As I cram hundreds of pages of brochures, lecture notes, handouts and new friends’ contact information in my suitcase my thoughts turn back toward my family. While I’m sure everyone at home is okay without me I’m wonder how they survived my absence. Did my husband manage the dietary needs? Were meds and supplements administered on time? Did everyone get along? Was everything easy peasy lemon squeezy so that next year I can sneak away on this now annual trek to the Windy City for another much-needed getaway?
Once I get through the maze of airport security and sit in my seat on the plane, the only thing I’m able to do is stare out the window. Forget reading my notes or any of the literature I’ve picked up over the weekend. My mind is overloaded with too much at this point so I just sit back and relax a little bit more. I’ll be home soon enough and will have to embrace the fast-paced life of taking care of my family on my own once again.
I travel a few hours on the flight which gives me more thinking time. I’ve just left the biggest group hug I’ve ever encountered in a long time. On the flight home and on the drive to my own community where support is far less than everything I’ve just experience, I slowly come off of the AutismOne conference high. After talking with a few friends on the way home we’re all sharing the same feelings--from start to finish, we went from high energy and pure joy to an emotional crash. Re-entering my every-day life makes me realize two things: I see how much work I've done already for my child and I fear how much more is yet to be accomplished to get to true recovery.
Because of the several late nights I had while away, and because of the thousands of steps I took walking back and forth and all over the hotel, all I want to do is fall into my own bed when I get home. I end up unpacking a few of the items from my bags though—the must read books and handouts go on my nightstand. I leave my hand-written notes from the lectures by the computer so I can look up key words or phrases. I enter friends’ contact info into my address book so as to keep those new and helpful friendships active. Lastly, I leave my camera out so I scan through the few pictures I was able to take of friends old and new to remind myself that I am certainly not alone on this journey.
I can’t help but think about how much I have done already for Ronan while I’m unpacking all the new items I gathered at from AutismOne. I think about how much more I want to do when I am next awake. I reflect on how much good has happened for Ronan because of the support we have been given. I know I need to consider what needs to be changed for Ronan to make his next days better. Even though some of the experiences at the conference were overwhelming, I greet the challenge of coming home to my own reality now that I feel refreshed from a quick getaway. The energy it took to get ready to go to Chicago is something I want to maintain once I return to my routine. It takes every bit of energy I have to get through every single one of my days. With that positive strength I feel I can embrace my own reality. It includes more than just me feeling like I can do things for Ronan; it includes watching my little boy grow up to be a recovered, healthy and happy child.
Cathy Jameson is a Contributing Editor for Age of Autism.