What Autism has taught me #2


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.


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.


It's what you NEED, maybe not what you WANT


OLYMPUS DIGITAL CAMERA This has been a year full of unexpected wonderful surprises, that will be HUGE life changing moments for our family. I couldn’t be more excited and grateful for where I am today. If I were to define 2015 I would say it has been about transformation, letting go, getting real about money, getting focused on the who I want to BE in work, life, relationship and parenthood, and lots of creation and movement.

Mr. Science and I had planned at the beginning of the year to take a trip to Kauai. Mr. Science had never been and I hadn’t visited since we spread my father ashes there years ago, so we booked my mom’s timeshare in late October, to secure our spot.

We planned this before we knew I was pregnant, or before we were engaged, and at the time our calendar was pretty wide open. We had decided after a busy 2014 year of travel Mr. Science and I agreed that this year, 2015 would be simple, easy, and our big excitement would be this one tropical vacation to Kauai.

And then boom, we were getting ready to be parents again, and planning a wedding in 6 months and, and, and...

And that’s how life is right? Make a plan, shit happens, scrap the plan, make a new plan, shit happens and then let go.

We decided that we would make Kauai our honeymoon & babymoon all wrapped in one. One last trip just me and Mr. Science. Who said the honeymoon had to come after the wedding? And my whole life I have done things backwards, so why stop now.

Kauai was beautiful, we took a helicopter ride and saw the Jurassic Park falls, snorkeled with tropical fish and turtles and swam in the lukewarm water, we ate hawaiian food, tried authentic shaved ice, bird watched, and went to bed at 8 p.m. If you have never been it's definitely worth going.

All this to say and I was totally overwhelmed with the difficulty I had with just being there, with doing NOTHING. With so many of my vices stripped away, internet, facebook, instagram, child, work, meetings, etc. I was left with space, so much space. It was illuminating to see all the many ways I can distract myself from being with myself.

My nature is to move, to do, to plan, and my life consists of keeping track of dates and Ryu’s schedule, his therapy, making his lunch, my work schedule, running my bootcamp business, planning our wedding, getting ready for baby, and my mind was swimming in details that I just couldn’t shut off right away. For the first few days I felt mostly restless, anxious and sad. With the absence of not doing and not rushing around, I was met with pure emotion.

It took some effort on my part, and a few tears being shed to just let those feelings be there AND also have a great time in hawaii. I don’t mean to paint the picture that I was sulking, I was just acutely aware of how badly I needed this vacation, even if it was to show me that I needed to make space for nothing, for staring out the window, for taking a nap, or meditating, or turning off the internet and not pushing, pushing, pushing.

The irony is that I came back from vacation rested and totally in relaxed mode. I have found myself sleeping in later and not feeling so anxious. I have found time to meditate and my clarity and focus on the direction of where I am going seem sharper. I can imagine the birth of little M, and have let go of it needing to be a certain way. And all without doing any “work” I came back to a packed schedule, the fullest I have been since starting working at this clinic.

The saying “you always get what you need, maybe not what you want” rings true for me, and while I’m sure as the days get closer to wedding day, and baby day, life will speed up and I will became wrapped up in the vortex, I hope to be reminded of this trip, all parts of it. The beauty of water and trees, the time alone with Mr. Science, the roosters, fish and turtles, the yummy coffee, and the anxiety, and fear and sadness. I love the idea that you can hold both beauty and ugliness at the same time, and I hope always that this trip reminds me to just observe and let go.