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All posts for the month July, 2014

Empathy – The Birth of a Blogger

Published July 24, 2014 by Jen Rosado from MyAlternateUniv

When I arrived in my alternate universe, my first thought was not to start writing a blog. Early on in my adventures, all my thoughts and energy went into SURVIVAL. Yes, I know this sounds a bit exaggerated and overly dramatic, but it’s true.

I think every parent of a child with special needs has read the beautiful essay by Emily Perl Kingsley called, “Welcome to Holland”. I get all teary-eyed when I read it, and I’ve shared it several times on Facebook over the years. In the essay, Emily describes her experience of finding out her child has a disability by comparing becoming a parent to a trip to Italy. You’re excited and prepared for Italy, read the guidebooks, learned some Italian phrases, and planned out which sites to visit. As the plane comes in for a landing, the stewardess announces that you’ve arrived…in Holland. Her description of the shock, the confusion, the disappointment, and finally the acceptance – that’s pretty much what it feels like.

But I’ve always imagined that our plane did not land in Italy or Holland. After all, Holland is peaceful and serene, with tulips and windmills – a nice, relaxing, slow-paced destination. I’m guessing that our pilot came over the intercom with an irritatingly jovial voice to announce, “Well folks, we know you love mystery and adventure! So we’re letting you jump out of the plane and parachute into this jungle here! Heh! Heh! It’s pretty crazy at night, so we recommend sleeping in shifts or not sleeping at all. Your mission is to find some friendly natives who live in the jungle. The quicker you find them the better off you’ll be in the long run, so pay attention! They will direct you to the nearest civilization – a busy and confusing city, crowded with honking cars and people who don’t speak your language. THAT is where you’ll find the next clues in your adventure. Aaaaaannnnd if you’re lucky, you might eventually find your way to HOLLAND!”

Ah, yes. That’s more like it. Now you see why I was focused on survival and self-preservation for those first few years. Our lives had become “Survivor”, “The Amazing Race”, and “Nanny 911”, all rolled into one.

After four and a half years in this place, the inspiration to write a blog hit me. WHY I wanted to write about my experiences is pretty selfish, really. I was looking for empathy. I wanted people to understand. I wanted to feel less alone.

Because this universe is terribly lonely at times. The nature of autism is a “separate-ness”, an “alone-ness”, not just for the child but also the parents. It doesn’t happen right away necessarily – it’s a distance that grows over time. Even after making new friends in the special-needs community, I still felt isolated. I missed my old friends, my old life. I found myself becoming ever more envious of the friends who ended up in “Italy”.

It was nobody’s fault really. My friends and I still tried to get-together and hang out. But I felt weird right after my son’s diagnosis – like an exposed nerve, electricity buzzing all around my head. I’m surprised people couldn’t hear all those excited electrons zipping and banging into each other, because all that racket was making it very difficult for me to put coherent thoughts together. And my anxiety was such that my head felt detached, as though it was floating a little above my body like a helium balloon.

Electrically charged particles, floating head, thoughts lost in a static haze…hmmm… sounds a little dangerous. Indeed, I should have had some kind of warning sign on me, mainly for my newly acquired case of “blurting”. I often found myself interrupting a pleasant conversation with friends to blurt out, “My son has autism…”. Of course, my poor friends would have no idea what to say or even what look to put on their face.

Later I’d be driving home, thoughts bouncing around in my electrified balloon head: Why weren’t my friends making me feel better? Didn’t they understand? Didn’t they know how difficult and painful this was for me?

The truth is, no, they didn’t understand. They COULDN’T understand, not really, unless they had been through it themselves.

This was my first “empathy epiphany”. I realized that when you empathize with someone, you try to put yourself in his/her shoes and understand their feelings from their perspective. This is a little more difficult to do when that person is going through something that you have absolutely no personal experience with. You end up pulling things from your memory that are closest to what they are going through, hoping those words of advice or reassurance will provide some comfort. I know, because I’ve done this before myself, when I really care about that person and their struggles, and I’m desperately trying to find a way to make them feel better.

But that’s not always easy…or even possible.

This was my second epiphany: It was not the job of my friends to make me feel better about my son’s autism. Because really, there was nothing anyone could say at that point to make me feel better. It was an unfair expectation.

So how does all this stuff about empathy lead to my decision to write a blog?

Well, the idea to write a blog came from my last “empathy epiphany.” It started with a fundraiser:

A month or two after the diagnosis, my sister-in-law called to tell me about a fundraising walk for an autism charity. “We should form a team!” she suggested. It sounded fun, so I agreed. It was only two weeks until the walk, but we managed to register our small team and raise $400. The event was such a wonderful, positive experience. Everyone there was celebrating someone with autism, just like us. With all the stress and anxiety that is autism, this was like a deep cleansing breath, and the positive energy grounded me. The buzzing electricity began to fade, and my head slowly returned to my shoulders.

Posting our team photo on Facebook was kind of like our autism “Big Reveal” to anyone who didn’t know about it yet. Empowered, I shared pictures and articles related to autism and posted occasional updates about my son’s progress in the months and years that followed. Autism wasn’t a secret to be hidden or discussed in hushed voices, nor was it something shocking that I needed to blurt out at dinner parties. It was simply a matter of fact: Our son had autism, and it was part of our reality now.

With this approach, friends wanted to know more about my son and his progress. They asked questions and took an interest in learning about autism. Some asked to join our team for future walks. It was as if people no longer had to worry about looking for the right words or the correct expression to put on their face when I talked about my son’s autism. Being open and honest, I felt more connected to people, sharing my experiences without placing unfair expectations on them to comfort me.

And here’s the strange thing – although there was no expectation of comfort, I WAS comforted. My comfort was the feeling that I was no longer ALONE in autism.

That was my final “empathy epiphany”, the reason I chose to start writing this blog. My friends didn’t have to understand everything that I was experiencing in order to give me love and support. They did that by just sharing in the journey.

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Happiness – A Trip to the Dollar Store

Published July 17, 2014 by Jen Rosado from MyAlternateUniv

So far, I’ve been writing my blog in chronological order. I like it when things are in order. It makes me happy. However, sometimes a totally blog-worthy story presents itself and rules have to be broken. If and when I publish my book, this will be a later chapter, in its correct chronological spot. This will make me happy. Until then, please enjoy this story in all its blog-worthiness:

Not long ago, I decided it was time to desensitize my four-year-old son to shopping. His autism and sensory processing disorder have always made shopping with him very challenging. I can’t be sure exactly what it is about stores that cause my boy so much anxiety. At school he had to be desensitized to the gymnasium, which absolutely terrified him. So maybe part of it was the largeness of the store and its tall ceilings. Then again, his senses have always been very sensitive, and all the hustle and bustle of a store, the colorful products and packages on tall shelves, the beeping of registers and loud announcements and such – it’s a lot to take in and process all at once!

And then of course, there are PEOPLE. My son will go to great lengths to avoid people. He will take himself as far from people as possible, keeping a constant eye out for an escape route. It doesn’t matter if it’s a store, a playground, a gathering of family members, a play date with friends – there is something about people that inspires a fight or flight response.

Obviously this is something we need to work on.

I began my quest for desensitization by taking him into the local country market in town. The first few times he clung to me as we did one quick walk around the perimeter aisles of the store. Next we graduated to walking up and down the aisles, picking out a banana or yogurt, then standing in line and making a purchase. His need to drag his hand along the products on the shelves and his fascination with the floor tiles prompted me to carry handi-wipes, but otherwise he did really well!

Next we tried Kmart – bigger store, but not huge crowds of people. He hesitated as we walked through the doors and tried to pull me back out. Once he resigned himself to the fact that we were, indeed, going into Kmart, he held tightly to my arm and walked quickly and purposefully around the outside aisles. We were not going to stop to look at anything, not even toys – his body language made that very clear. He wanted to get out of there as soon as possible. He looked down each aisle in hopes of catching a glimpse of the exit, and he damn-near sprinted when we got within sight of the glass doors. I gave him hugs and lots of praise when we finally walked out into the sunshine.

We made other excursions into stores like Stop and Shop and Kohl’s. Toys-R-Us was interesting: Despite being a happy destination for most children, my son didn’t make it past the first display before he was pulling my husband and I toward the exit in a panic.

A few days after the Toys-R-Us attempt, I decided to try taking my son to the dollar store with me. I needed to buy some plates and party favors for his birthday, and I thought it would be a good opportunity to practice shopping and waiting in line.

Entering the dollar store was similar to other store experiences. He hesitated at the door, turning to me with his arms up indicating that he wanted to be carried. I hoisted up my 40-pound boy and hoped that I wouldn’t have to carry him around the whole store.

It turns out that, no, I would not have to carry him.

As we walked in, a look of absolute joy came over my son’s face. He gazed around the dazzling, magical wonderland that is the dollar store, slid down from my hip, and laughed, saying, “Iiii-yeee!” (My son is non-verbal, but he makes vocalizations that often indicate how he is feeling. This particular vocalization is one of his “happy sounds”.) I took his hand, and we walked down the first aisle where the paper plates were found. He touched the shrink-wrap on the colorful plates and cups and tried to reach the balloons that were bobbing from a display. “Iiii-yeee!” he laughed.

“I know, Buddy! This place IS great!” I was thoroughly enjoying his reaction. He was smiling and laughing and jumping up and down, having fun exploring the store, completely ignoring the people around him. A lady nearby smiled and commented how adorable he was.

At some point his happiness became so overwhelming it could no longer be contained – he just HAD to let it out. My arm pulled downward with the weight of his body as he sat down on the floor and kicked his feet in an excited frenzy.

This, of course, reminded me of the first time I had shopped in a dollar store: “You mean THIS is only a dollar?! No Way! What about this? This is only a dollar, TOO?! This place is AWESOME!” So that’s pretty much what I imagined my boy was saying as he made happy sounds and kicked his feet on the floor: “Mom! All this stuff is a dollar! Can you BELIEVE it? This place is AWESOME!”

I picked him up off the floor and crouched at eye level to him. “No, Honey. We don’t sit on the floor. We walk in the store.” He might not have understood the words I was saying, but I was pretty sure he got the message that he was not supposed to sit on the floor and kick.

Or, maybe not.

We continued through the store – me, choosing plates, decorations, and some glow sticks for party favors; my son, sitting down every few feet to kick and laugh.

In the toy aisle, my son’s excitement exploded into a supernova of wild exuberance. He found a display of plastic toy megaphones and started pulling them out of the box and throwing them on the floor, creating an obstacle between us. Then he took off in a sprint, not entirely unlike a criminal in a police drama, dumping a trashcan over to slow the pursuit of the cop chasing him down an alley. I’ll admit, it kind of worked. I hesitated, trying to decide if I should chase him or clean up the mess he had made first. It didn’t matter, because ultimately his get-away was foiled by his inability to resist the urge to sit down and kick his feet. I captured him before he made it around the corner and, holding him tightly with one hand, cleaned up the megaphones.

At this point I realized that my boy was a bit TOO comfortable in this store. It was time to leave.

We waited in line, the weight of my boy pulling me sideways as he hung limply from my arm, laughing. I reconsidered the glow sticks as the thought of my son biting into one of them and the subsequent calls to poison control entered my head. I put them on a nearby display, paid for the rest of my things, and carried my boy from the store (because now apparently he didn’t want to leave).

During the car ride home, I found myself imagining my son five or six years in the future. A four-year-old, sitting on the floor in a store, kicking and laughing with joy, is kind of cute. But what about when he is ten years old? His behavior will not be so cute then. He will be bigger, heavier, and quicker, and his escape attempts might be more successful. It’s scary to think about. Perhaps by then, after years of practice, he will learn the appropriate behavior for when we’re out in public and not be so enamored by magical places like the dollar store.

I looked at my son’s smiling face in the review mirror. I really didn’t want to lose that innocent joy. Maybe we could find a way to keep the joy, just teach him to contain it and express it in a way that won’t make him a danger to himself or others. And, hey – if he wants to laugh and let out a few “Iiii-yee’s”, so be it.

Heck, I might just join him in his celebration, because he’s right…the dollar store IS a pretty awesome place.

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