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Tuesday, November 2, 2010

Silence Is Golden? Or Loud and Proud?

If you were on Facebook or Twitter yesterday, more than likely you saw an abundance of posts/tweets about autism. Yesterday was Communication Shutdown Day.

"Our aim is to simply encourage a greater understanding from people outside the autism community. Social network users have become reliant and even addicted to platforms like Facebook and Twitter. And if they shutdown for 1 day, they will feel a sense of disconnection and a sense of frustration. By creating a little empathy, we hope to encourage a wider understanding and acceptance of people with autism - an understanding we recognise (sic) those in the autism community already have."

For those of us who aren't blessed to personally know an autistic child, the silence was...silence...and I wouldn't have missed a thing if it wasn't for Sunday Stilwell of Adventures in Extreme Parenthood. One of the things I love about my job is having the opportunity to meet amazing people doing extraordinary things, and Sunday is one of those people. She's a mom of two precious boys, Sam and Noah, who are at the severe end of the autism spectrum. She's an advocate and loud voice for the autism community. There was no way she was going to be silenced.

Sunday lit. it. up. on Facebook and Twitter, sharing resources, tips, and helping to bring awareness to something most of us have no clue about: how to interact with and help children/families with autism. I was fascinated by the information and tucked a lot of it way in my memory bank. I asked Sunday if she would share a favorite piece of advice or Top 10 list that she wished people would know about autism, so here are her Ten Things Autism Has Taught Me About Life. Please read though it. Have compassion. And think about how you can help a family that you know of that has an autistic child.


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Ten Things Autism Has Taught Me About Life

Sunday Stilwell, Adventures In Extreme Parenthood
1) Unless it's a party, no one likes surprises
One of the universal truths of autism is the importance of knowing at all times what is coming next. Nothing can upset a child with autism like an extra errand they were not told to expect. Similarly it can be just as devastating to have an errand or activity removed from a planned outing. Something as simple as taking a different way home from Grandma's house can be both upsetting and also unsettling.

2) You can't read a book by its cover
One of my favorite sayings about individuals with autism is this..."If you have met 1 person with autism, that's have met 1 person." Autism is a spectrum disorder. Within that spectrum you have individuals who are non-verbal and require constant supervision for their entire lives while also including on the opposite end individuals who are "quirky" or mildly socially awkward. The best way to learn more about an autistic individual is to spend time with that individual. Learn their strengths, accept their limitations, and expect to be amazed!

3) Sometimes we just need a time-out
Individuals with autism can become easily agitated by situations and locations a typical person would never notice. Fluorescent lights are often unbearable for children with autism as the sound they produce can be merely annoying at best and deafening at worst. Combined with the assault of extra sensory sights and sounds of their surroundings it is no surprise that many individuals with autism have meltdowns in public places such as the grocery store or a shopping mall.

We all need a time-out when we feel our anxiety gaining speed and our coping mechanisms failing. However, for someone with autism it is very difficult if not impossible for them to voice their need or to pinpoint exactly what is setting them off.

4) Denial is counterproductive
One of the hardest things to hear a doctor say is, "Your child has autism" or "cancer" or "diabetes." No matter what the diagnosis chances are it will come as a shock. This is true even in situations when the diagnosis is expected. Some parents need a few days to let it all sink in. Some immediately call every family member and close friend for their added support. Others may choose to tell no one for a short time.

Unfortunately all too often I hear of a parent or their spouse who refuse to acknowledge their child's diagnosis. Unlike cancer or diabetes a child with autism is not in immediate medical danger if proactive steps are not taken right away. However, their developmental progress very well (and usually) can be.

I cannot think of a single instance in life where denial is the right course of action. At times we may choose to deny something because it is emotionally painful and devastating and so we allow ourselves to only feel bits and pieces over a period of time in order to cope. But when this is done at the expense of a child in need of early intervention therapies such as occupational, speech, and physical therapy it is nothing less than a travesty.

5) A smile has no shelf life
When I am at my wits end and I am feeling frustrated, lonely, and ready to blow a gasket it will be at that exact moment that one of my boys will smile or giggle unexpectedly. Perhaps it was something they saw out of the corner of their eyes or they heard a silly noise. Whatever the cause their smile can melt my heart and remind me that this parenting deal isn't always so raw. Sometimes its nothing less than extraordinary.

6) Take time to smell the roses
This is probably the easiest lesson to skip or gloss over as a parent. We spend our days moving at rapid-fire speed to get everything done and in doing so we can miss so many of the simple pleasures around us. My son, Noah, has taught me this lesson time and time again. He takes pleasure in the smallest sounds of birds chirping in the trees or the way the wind blows through the trees and causes the leaves to rustle and spin. He will lay in front of our sliding glass doors and bask in the morning sun like a cat. He will do these things and ignore the toys in the toy box behind him or the books sitting next to him on the shelf. For those moments he simply wants to meditate on where he is right there in the moment.

7) Too much of a good thing is still too much
Most individuals with autism have a "stim". A stim is any action done repetitively to calm the central nervous system. For some it is flapping of the hands, jumping up and down, or perhaps audibly repeating a word or phrase over and over again. My son, Sam, is a drummer or typically what I call a banger. He prefers to find a metal object to rhythmically bang against another object. Much of the time he does not act as if he knows he is doing it. It's as much a reflex as blinking his eyes.

That being said there are times that his stimulatory behavior can be quite distracting and potentially damaging. Sam will think nothing of picking up a glass item to use as a drum or banging on a plasma TV screen. Clearly these are times that his need to calm his mind need to be redirected towards something else.

8) It's not about me
I first learned this lesson immediately upon giving birth to Sam. As I held him that first time I knew that my life was forever changed. I knew that from that point on I would always think of him before myself and that his health and happiness would be my guiding light for the rest of my life. With his diagnosis of autism and then the birth of his brother, Noah, and his eventual diagnosis I continued to be reminded that this world and this life is not about me. However, I also learned that it is not about Autism. It is not about a diagnosis. What it is about is love.

9) The only guarantee we have is right now
As a mother with 2 special needs children it is very easy to worry about the future and to consume yourself with the "what-if" game.

"What if one of them wanders away?"
"What if something happens to me?"
"What if I the day comes that I can't physically care for them anymore?"

The hard part is remembering that the only thing I need to concentrate on is right now. I often repeat the "One Day At A Time" mantra to myself because many times that is all I really need to hear.

However, I also know for sure that I have a guarantee for our future in the hands of God. I am faith-filled and glory-focused and when the whole world seems to be falling apart I can place my trust in Him.

10) A heavy load is easier to bear when someone helps you carry it
When we are weary and heavy laden the best thing we can do for ourselves and our children is to ask for help. At times it can be the absolute hardest thing to do. Even asking help of someone we love, like our spouse or our family can be overwhelming. I think this happens because we spend so much of our time and our energy caring for our children and anticipating their needs that we really want someone to do the same for us.

And they can. But you are going to have to ask them for it.

Our family and friends, and even our spouses, are not mind readers. They may not know when we are at our breaking point. This is where communication and honesty are paramount.

Mothering my sons has very much shaped my world and my view of it. Just as their lives have shaped my heart.

Ten Things Autism Has Taught Me About Life is reprinted with permission from Sunday Stilwell. Connect with Sunday on her blog, Adventures In Extreme Parenthood, Facebook, and on Twitter. 

1 comment:

  1. Thank you so much for sharing this Erin and for helping bring the reality of autism, what it is, and what it is not into the spotlight.

    Your support and that of my family and friends is what brings me strength when the going gets tough.



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