What Autism has taught me #2

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I made a new friend the other day at the park, our kids are in the same class and we politely started talking while the boys ran around. Her daughter was there also, playing in the sand and swinging alone and while we talked she would casually say things about her daughter, who she referred to as monkey:

“Monkey can’t eat soy, dairy, sugar or gluten, so these cookies are great!

That’s pretty normal for San Diego, so I didn’t think much about it but then she said

“Monkey couldn’t go to any of the private schools around here so that’s why we are at this school, which we love!”

This peaked my interest, so I asked:

“Why can’t she go the private schools?”

“O, she has Autism and is nonverbal so they can refuse to accept her.”

internal voice: WHAT! OMG, she said that so casually!

“You know, R has Autism too!!!” I blurted out, probably too enthusiastically.

“Yeah, but he can talk, Monkey is smart and can talk but she just refuses to, that’s so frustrating”

She didn’t even flinch when I told her R had Autism and responded as if I had told her the weather was nice that day.

The exhale I had in that moment reminded me that I tend to hold my breath in those first meetings with parents. I’m always wondering in the back of my head, do I tell them or do I say nothing?

Usually I say nothing.

It is not that I am ashamed of R and his diagnosis, or that we have a hard time with R being Autistic, I feel the opposite in fact, our life is so much more colorful, and magical with the way he views the world.

But in that moment my excitement was more about relief. Relief that I didn’t need to explain what Autism meant, or give an explanation that R is high functioning or that I didn’t have to feel her uncomfortableness of how to react, because I knew she just GOT it, and she didn’t care, it was no big deal.

I wonder if we both felt that same relief, because her next question was excitedly

“Where do you work out!?”

It was as if we got that elephant in the room out of the way and we were able to just be parents. There wasn’t the wonder of if I would disclose R’s diagnosis and I wasn’t faced with the uncomfortable worry of other people and their perceptions of Autism.

I’m not judging anyone for having uncomfortable feelings. I too, before I experienced Autism thought all sorts of negative stereotypes about autism that I wouldn’t have chosen for myself or my child if I’d had a choice.

But life handed us Autism and the only choice was to enter that world and become educated and skilled in helping R succeed. In doing so I realized that it was not as scary as I had thought and wasn’t going to be a horrible burden or a lifetime of struggle. I saw that my little boy was still the amazingly creative, funny, sweet, musical, engineer, lego loving kid that I had always known. I also realized that I have no idea what Autism really is.

All I know is every detail of how R’s Autism manifests. The saying is: “if you’ve met one person with autism, you’ve met one person with autism.”

What was the same about my new mom friend and I was that we understood a language and lifestyle that comes with being autistic. When I told her we had to leave early for therapy, it wasn’t weird, in fact their ABA therapist was coming over later that night too.

I came home that night excited and giddy as I told Mr. Science all about my new friend and our day.

I know it may sound a bit over exaggerated to get so worked up over this moment but in a world of parental posturing and properness, It felt so free to just be ourselves, no apologies, no explanations.

It’s been a journey to where I am today with my sons diagnosis and I would be lying if I didn’t say at some point I just wanted him to be “cured”, or “fixed” but really if I stripped away the Autism would R still be R?

R has made leaps and bounds in his communication and ability to make new friends. I love that people see him for who he is and love him all the same, this makes my heart leap for joy. He has taught me to communicate clearly, to say what I mean and mean what I say, to set good boundaries for myself and for him, and to play and imagine and forget this world on a daily basis. I’ve been to outer-space and visited the moon more times than I can count!

I’ve moved beyond wanting to cure him of his Autism, my wish is to give him all the resources and support in the world so that he can feel good, confident and happy.

But, I think that’s what we all want for our children.

I guess we are no different.

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Thanks for reading!

As a side note I am reading an amazing book called Far From the Tree: Parents, Children and Search for identity by Andrew Solomon, which talks about families dealing with deafness, dwarfism, autism and other disabilities, its a a great look at how we view these conditions in our society and he presents some interesting ideas and comparisons that have really made me think differently about autism.

http://www.amazon.com/Far-Tree-Parents-Children-Identity/dp/0743236726/ref=sr_1_1?ie=UTF8&qid=1457570774&sr=8-1&keywords=Far+From+the+Tree

The Curious Creative

imageThe creative journey has brought up some questions for me. What is difference between pushing and forcing? What are the signs to stop, change direction, and let go? What does it mean when something is draining and not charging/uplifting? Do I sit through the uncomfortableness, or do I abandon ship all together? I have been in business for myself for the past 9 years, this has taken shape in many different ways, etsy businesses, aerial bootcamp, personal trainer, acupuncture practice, air bnb landlord, aerial performer, and other smaller creative projects. I have started and created businesses that have made up the tapestry of my income.

By definition that makes me an entrepreneur, however I’ve never really identified with that term. I identify more with the term creative, because it seems to encompass more of who I am. My desire to create and build an income and be my own boss is in service to support creativity, self development, and helping other people.

The measure by which I gauge if something is worth doing is “Is this fun? does it bring me joy?, does this light me up? If the answer is yes, then my next question is “Will this add to or take away from the lifestyle I want to live (i.e will I still be able to spend time with my children, my husband, and have time for creative pursuits?”) If the answer is Yes. Then the last question is usually “How much of a financial risk will this involve?” If the answer is minimal then I most likely will pursue it. This is my business and life compass, it has nothing to do with numbers or marketing and strategy and everything to do with the feeling I am after.

There is so much information out there on how to build a business, how to create more wealth, how to sell better, how to build your audience, and I actually love a lot of it. I appreciate that there are other creatives out there pursuing their dreams, bringing new ideas and verbage around being a business owner, and making a living doing it.

But the chatter and all the advise can become overwhelming and actually create more confusion for me at times, making the dream of become an creativeprenuer all the more elusive. The do’s and dont’s can sometimes make it difficult to decide when to just put yourself out there with the “ugly” work, or when it is time to wait it out.

“you guys, just get started, sit down and do the work!” - some business coach

or

“Be vulnerable but don’t share what is personal” - some business coach

And that’s when I have to say “fuck it” and throw it all out, and just listen to what my gut is saying, listen to what I feel like doing, and be willing to risk the mistakes and the hard lessons for the pursuit of doing what I love.

Because the truth is that most of us learn by failing and flailing at something.

I wish that I would see more of the process of the in-between pursuits of the passions in our lives, I wish that while on the way to the bigger dreams of our lives people talked about what its like to be in the middle of something rather than waiting until we reach the top of the mountain, to me that is inspiring, to me that is where the interesting part of life happens.

In the mud and loving it.

Get Messy.

Ten years from now we'll look back at this [challenge] and laugh, so why wait?!?! -Tony Robbins

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