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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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In Their Own Words – The True Heroes of Autism

July 1, 2010 27 comments

This “In Their Own Words” essay was submitted by Becki Becker who has a child with autism. You can read more of her writing at http://theothersideofnormal.wordpress.com/.

I read an article today online that was published in the March issue of the journal Focus on Autism and Other Developmental Disabilities. The findings show that some siblings of autisic preschoolers show signs of developing hyperactivity. It also supports the notion that mothers of young autistic children experience more depression and stress than mothers of typically developing children.

The article states that siblings of children with autism probably should be watched with appropriate academic supports in place, says Laura Lee McIntyre. “Our findings are rather positive overall, but these kids should be on our radar screens,” she adds. “It has been shown that around 30 percent of siblings of autistic children have some associated difficulties in behavior, learning, or development.”

I’ll give you my professional advice on the subject. Just some thoughts from a mom who has lived with this subject for over 15 years now.

Siblings of a child with autism are a special breed. They are thrown into a world of chaos and unpredictable moments. Every trip to the grocery store, community center, or even restaurant is sometimes humiliating and extremely stressful. Every holiday is an adventure in coping. They are asked to help watch their sibling so the parents can run errands, or have a conversation, or work from home, or even take a bath. They are asked to not talk loudly, play music, or watch a movie as it might upset their sibling. They are asked to limit visitors to the house to avoid extra chaos. They sacrifice their rooms, clothes, bathrooms and sometimes computers. They watch in horror as a meltdown occurs and try not to add to their parents stress.

I see these siblings as incredible people. They are exposed to more in their first 18 years than most adults in a lifetime. They learn to accept people for who they are, and to not judge someone if they are different. They learn to share. They learn that life is not fair. They learn that short-term sacrifices will help achieve long-term goals.

They learn to not “react” to their sibling; reacting just creates more chaos, more stress.  They know that their sibling does not “hear” their words but only sees their actions, which just makes the unwelcomed behavior continue.

Siblings change their diets to support their brother. Siblings give up a Saturday night with friends so their parents can get a much needed break.

I don’t doubt that the above findings are true. I’m sure they will find a lot of long-term effects on siblings of a child with autism. I just wish some of the studies would also “find” the incredible, undeniable, God-given coping skills that these kids develop. They are the true heroes of autism.

“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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