Saturday, January 14, 2012

Aspie at a Health Fair - First time presenting for Autism Empowerment

Do you mind if I share some exciting news with you?

Well, even if you do, I'm going to share it anyway!

Today my husband John and I were exhibitors at the Firstenburg Annual Health & Wellness Fair in Vancouver, Washington. We represented Autism Empowerment, the 501(c)(3) nonprofit we founded last year.  This was the first time that as an organization, we participated in a health fair and provided information and outreach to the public about autism spectrum disorders and often related co-conditions such as Sensory Processing Disorder, OCD and ADHD. We also introduced the public to our organization and shared about the programs and services we are developing and working to fund.  We promoted the four foundational pillars of our organization: Accept, Enrich, Inspire and Empower.

It was invigorating, exciting, empowering, insightful and reinforced that all the work we've put in over the past few months preparing ourselves for events like these were well worth it.  Last night John and I were burning the midnight oil preparing.

It was also scary.  To be honest, I wasn't sure how well I would do in a small space with lots of unfamiliar people, conflicting noises from different booths and trying to participate in multiple conversations at the same time.  Being on the autism spectrum myself with Asperger Syndrome, I have challenges in social situations. I can do a pretty decent job speaking in front of others when I have a script in my head to use but sudden unexpected questions where I feel unprepared can really rattle me.

I had to do it though.  This is such a passion for me. It's hard to explain.  I have a real desire to let people in this world know that those on the autism spectrum are amazing people that deserve acceptance and respect.  They each have an inner voice and something special to contribute to the world.  They also have challenges that can often be assisted with strategies tailored to them.

Today I saw firsthand how accepting and how clueless the general public could be.  Some could even be quite rude.  I am reminded of a woman probably in her 60's who was looking at our table. I smiled and greeted her and introduced our non-profit and she replied something along the lines of "oh, thank GOODNESS I don't have to deal with people like THAT. Autistic people scare me. I leave whenever I see one of THEM come into the room."

Lady, you scared me.  I may be an Aspie, but you're assinine...

For a millisecond, I contemplated sharing with her that I was one of "those" people and perhaps she should be leaving the health fair pronto but it occurred to me that what she needed was information, education and probably a few prayers too so I smiled and was kind and gave her as positive an impression as I could. Maybe I made a difference, maybe not. There was no way I was not going to positively advocate for my fellow brothers and sisters in the autism community.

Although there were others that passed by our table that made some comments which I'm glad my kids weren't around to hear, I made it my goal to be a positive advocate for those on the autism spectrum who could speak and for those who couldn't.  Granted, I am just one voice among many but we all deserve to be accepted and treated with respect and kindness.

I disclosed my Asperger's to many today and I also talked about being the mom to two sons on the spectrum.  Wearing the mom hat, I could talk with and relate to other parents who were experiencing challenges and questions about their kiddos but weren't sure what the next step was. Wearing the Aspie hat, it opened the door for conversations with a few adults who were interested in possibly getting diagnosed or finding answers and resources for challenges they were facing.

I am not ashamed of who I am. I realize that for many that there is a stigma attached to autism but I'd like to be a part of changing that impression.  There were a few that upon my disclosure looked freaked out that they might have said something that offended me but I'm a big girl and would rather have these conversations face-to-face where I can respond than behind my back where I can't.

The comments that always amuse, confuse and sadden me simultaneously are along the lines of...  "Really? But you seem so normal..." or "well, if you can communicate like this, it really can't be that bad for you." I try to make the assumption that most people are well-meaning when they say stuff like that but seriously... how do you respond to comments like these?  I "seem" so normal.. but...???  Minimalizing my challenges after just a few moments spent with me?

Well to be honest, I often thought I was from another planet growing up or at least another plane of existence, so the thought that I might not be considered "normal" (whatever THAT is) doesn't really phase me anymore. Although I suppose these comments are intended by some as a compliment, they really come off as back-handed insults so people, please be mindful of what you're saying!

That being said, I've put my foot in my mouth before more times than I can count so I try and give people the benefit of the doubt until they prove that wrong.  If I wasted my energy being adversarial with everyone that said something negative or rude, I'd live a very unhappy life.  In my opinion, it's much better to show a positive example but still an honest one.  Just because I may be able to write or articulate myself, doesn't mean it's a cake walk. It is very hard work and will always be a work in progress.

There is something else interesting about the health fair today that I wanted to share.  Our table was located next to a father and daughter who were exhibiting something completely unrelated to autism (I won't disclose it here out of respect for their privacy) but in getting to know our table neighbors, they disclosed to us that both of them were also on the autism spectrum, the father with Asperger's and the daughter with autistic disorder or more "classic" autism.  At the table on the other side of us, there was a mother who struck up a conversation with us because her school-age son has Asperger's.

What are the odds of Autism Empowerment being placed between these two families?  I don't know whether you believe in God but I do and I believe we were placed there for a reason and an opportunity to connect.

Today was an amazing day.  We made connections with other service providers in the community that we're going to hopefully partner with in upcoming events.  We gained information from some local health care providers that we're going to add as resources on the Autism Empowerment website.  We handed out a number of packets, added some to our new mailing list and had some heartfelt conversations with individuals who wanted to know more about autism spectrum disorders.

I might have had my heart racing and I might have looked to some like a deer caught in the headlights in trying to respond to certain questions but in every instance, I did my very best.  Thank goodness my husband John was by my side.  As the only "neurotypical" in the family, we sometimes joke at home that he's the odd man out.  Well today, every time that I stumbled or paused to process information and gather my thoughts, John was there.  Sometimes all it took was a reassuring hand on my shoulder, a little extra grounding sensory input, a safe zone... He is an incredible advocate for the autism community and I wish all fathers of children on the spectrum were as interested and involved as he is.

I am also thankful to my parents who without their unconditional support and love, this would not have been possible. They know my passion and fully support our vision for providing positive accepting, educational and inspirational resources and support to the autism community right now. So many times we hear of studies that are researching this or that and although we have participated in some of these studies ourselves and know they may very well have a benefit down the road, what we have heard from so many families is that people are looking for resources and support that can help them right now.  They are looking for emotional, strategic, financial, physical and spiritual support.  They are looking for the best way to help their loved one with autism reach his or her highest potential. That is what we aim to provide... and we are excited about developing an Autism Empowerment Support Network built on excellence, built on the experience of individuals and families living with ASDs and built with passion, acceptance, love, a thirst for knowledge and an unstoppable desire to continually seek resources to better one's life.

Now that we have our first health fair under our belt, we are excited and looking forward to the next.  After four hours of conversation with strangers, I needed decompression time when I got home.  Admittedly, I went straight to the computer and started researching websites of providers we had met but then it occurred to me that I was physically exhausted and needed time to be able to come down and process everything that had just happened.  After a rare and well-needed nap, I came back, did some work for our business that pays the bills (Count Your Beans), posted a few blurbs here and there on Facebook and came to Asperiations, Come As You Are, Let Your Light Shine to blog.

I have decided that it is important to share more of my personal journey along the spectrum... the successes, the challenges, the trials and tribulations, the meltdowns, the accomplishments, the humor, the advocacy... it all needs to be out there to give a more complete picture of life on the spectrum.

Should you be at an event in the future and come across Autism Empowerment, please feel free to come over, say hi and share your story.  In fact, you can say hi now at our Facebook page.  It's relatively new and growing but we look forward to getting the word out to those in the autism community that it is a positive place to congregate for support, inspiration, acceptance and enrichment.  As mentioned above, the four foundational pillars of Autism Empowerment are AcceptEnrichInspire and Empower and that is what we intend to provide with each program and service we develop.... not just today but tomorrow and every day in the future. People on the autism spectrum need to have a venue to let their light shine. Quite frankly, everyone needs that venue.  If you're experienced in fund-raising, work for a company that supports causes such as ours, have an involvement in the media and/or are interested in our mission, we could use your help.

Won't you join us?

Here is my Aspierations Facebook page:

Here is the Autism Empowerment Facebook page: -

Here is the Autism and Scouting Facebook page (a program of Autism Empowerment):

Here is our Autism Empowerment website:

Here are PDFs of a few of the sheets we handed out today:

Thank you so much for reading my blog today!  I welcome your feedback and support!  Starting a non-profit 501(c)(3) has been quite an adventure thus far.  I have learned there are areas where I shine (coming up with ideas for programs, internet research, exuberance and passion, creative and organizational writing,sending professional emails....) and there are areas where I have a lot of room to grow (asking for money, securing corporate partnerships, time-management, overcoming initial writer's block when taking on tasks, initiating phone calls, reading social cues in person and not talking too fast or too much when I'm nervous.)

Please feel free to share this blog as I look forward to sharing my journey, the journey of my family and the growth of Autism Empowerment with you!

Best wishes in your own journey!
Letting my Light Shine today and always,
Karen Krejcha

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