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In Their Own Words – If You Knew

June 9, 2011 43 comments

This poem is by Lisa Madren, whose son has autism.

You do not know my child

But if you did, you’d regret the time spent that you did not know him

He is different

But that does not mean he is not a wonder to behold

Sometimes beauty lies behind what is considered “normal”

Sometimes the beauty of a special soul lies within an enigma

A pearl that lies imprisoned in a tough clam’s shell

A treasure that you must work hard to get at

To pry open

To find the jewel underneath

And once you saw that pearl, you would want to admire it

You would want to possess it

You would want to display it proudly

And you would wonder why you had not seen it underneath its shell before

And you might stop to observe the other previously unnoticed gems in the sea

You might discover that not all the coral must be red

Or all the fish must be golden

Or that all the seaweed must be green

To have value

To deserve friendship

To be capable of love

If you knew my child your vision would widen to see all the colors and possibilities

That lie within all of God’s creatures

If you knew my child

If you really knew my child.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Special

August 21, 2010 12 comments

This “In Their Own Words” is by Kimberly Cecero Brown of South Portland, Maine, who has a daughter with autism.

I feel I have always embraced people’s differences and, in fact, have been inspired and sought friendships with those who I perceive walk through life to a beat of a different drummer. I find those who think outside the box interesting and am always enthralled to listen to those who innately think different than myself.  That’s why I find it curious why I am struggling, at times, to celebrate Eme’s differences. It brings me shame the days I find myself quite traumatized to imagine our lives if Eme’s autism becomes severe, if she never recovers to a point where she could be among typical peers in the classroom and at social gatherings, if she is never accepted into the world of her peers.

At this point in time, with Eme being so young, we do not yet know if her autism will be considered mild or severe.  We have no idea what her or our family’s future holds. Yes, this is true for everyone.  No one knows what will happen.  But if you are the parent of a very young child with autism, you don’t know if you’ll be dropping your child off at a normal school or if she’ll be at a special school at six years old still trying to learn to speak, to complete a simple task children many years younger could do, if she’ll be flailing on the floor like a hooked shark on a boat deck just because she can’t do what she wants. It is terrifying.  This is why it is so important that parents of children with autism stay present in each day.  To discipline their emotional selves to not think of the future.  To do your best, and love your most, every single day without expectations for tomorrow.  It sounds like an empowering philosophy, but very difficult to master.  I struggle every day to stay present.

I am a stay-at-home mom, and on the worst of days when there is no escape from the reality, I can’t help but think, “How am I going to keep this up?  How am I going to deal with this autism thing for my whole life. I can’t do this.  It’s killing me.  My heart is being repeatedly ripped out of my chest, put back in, and ripped out again.”

Rationally, I know this stream of consciousness is a complete failure of any sort of coping mechanism.  It’s not coping at all.  And I wish I can snap my fingers and come out of it during those times and think positive thoughts and not think of the future. But when you’re in “it,” it’s like being stuck in the middle of a sopping bog, your wellies emerged deep into the mud up to your knee caps. You feel stuck and when you finally find the strength to lift your boot out of the muck, you have to step in more of it to get across.

So when I go on some autism sites and see this celebration of autism and how beautiful it is that our children are “different,” I feel conflicted.  Now that is a philosophy I’ve held onto steadfastly the majority of my life, celebrating “differences”, so why do I digest it all with a tad of reflux?  On emotionally horrible days for me, I think it’s all a bunch of hogwash, a facade developed to keep parents sane and to brainwash us to think we’re special because our kids are so special. To keep us all from running out of our houses, screaming our heads off in frustration, anger and sadness at the lot our children have been given.  I almost want to sarcastically laugh that someone like me is pleading that I don’t want my kid to be celebrated as “different”, that I want my kid to be ho hum “normal” (typical).

And I suppose the shame comes in, because not am I only thinking these things, but I keep these thoughts secret.  Like if I was to say them aloud, even in a room alone, it makes me a bad mother who is ungrateful for being given the beautiful gift of a child with autism.

And then a paranormal force lifts me from the muck and back to solid ground,  and I feel a sudden embrace around the bottom of my legs.  I look down to see two sparkling blue eyes peering up, emitting intense love and admiration for me, tiny arms hugging my knees with enthusiastic might. There is my Eme, my Golden Soul, and yes, she is special.  And not special, aka autistic, but a small little being beyond extraordinary.  A little girl, despite her diagnosis, who has found a way to embrace and express such pure love, without the need to use spoken language to do so.  She can speak volumes with her eyes and you can sense the presence of a venerable and significant soul through her stare.  A joyful child who wants to fly to the sky to convey her authentic happiness when it overcomes her. I am blessed and I am grateful. I feel honored to be her mother.  I feel that no scale of autism severity can define my little girl, for she is a gift, no matter her progress, and has so much to give to this world. I celebrate our Eme and her extraordinary self.  With or without autism, she is important in this world, especially my world.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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