Tuesday, April 2, 2013

Autism not only Speaks, it Teaches


This one is important. I hope I got it right.


So, lets talk about something I usually avoid. Not because it is bad or carries a stigma, but because I am an outsider looking in and I Never wish to trespass on another's feelings or life experiences. I must admit, when I first put the little blue icon on my profile for the first time two years ago...(I think it was a light bulb?) I knew next to nothing about Autism and did not really give it much thought. I did it as much to "fit in" as to raise awareness.....actually that is crap. I did not give it another thought. I could not relate. For me, that changed on a day like so many others. With me blissfully pushing a red cart around my local Target. Ever since it opened some years back my daughter and I had made a habit of checking out what was new and what was on clearance. It was our favorite exercise. Three laps around one way and three back the other direction. Then we would go aisle by aisle marveling at it all and budgeting in for whatever it was we found we did not know we needed, but now could not visualize our lives without.

  I relive those days often now that my daughter is all grown up and on her own. It was just me and Edgar making our way through the tissue section when I saw him. Or more accurately he came full force at us with his mother in his wake a stunned and almost panicked look on her face. I could tell he was different. He was over animated and made guttural noises that could not be deciphered as language. But, I understood him. It was Edgar. My little 2.5 pounds of love and joy had captured this little boys attention and he wanted a closer look. His mother closed in and tried to wrangle him back to the cart. He must have been about eight. All long limbs and loose joints. I met her eyes and I saw it there. Her fear of me. Of my reaction to this precious soul who only wanted to see the little dog with the big eyes. My heart broke a little and what was left melted. I mouthed that it was okay. I do not know what made me whisper it. I did not wish to upset either of them. I picked up Edgar and bent forward. Holding out my own special need disguised as a mini Yorkie. She stood there for a bit, this little group of emotion clogging up the aisle and watching this child be...a child. He pet Edgar and with his mother's help, held him. Edgar licked his hands, which made him give his version of a laugh and a smile.

  His mother thanked me and I shook my head to signify that it was nothing. And it was a lie. It was so much. I got to see just a small fragment of this woman's daily life. A flash of what must be an exhaustive labor of love. I cannot tell you how I would have reacted to someone who was rude to my child. Especially for something that they could not help. Something that was no one's fault. Something that was just the luck of the draw or the roll of the dice. I would be in jail before they were two. I would not be able to contain myself. What must that woman have had to deal with to reflect that fear in her eyes? How much had she had to swallowed? How much rudeness and stares. Or even worse avoidance. There would be no play dates in her future. No sports games or Homecoming and definitely not a wedding. All those dreams that we mothers indulge in while we are mark the nine months until the day finally arrived and that tiny bundle of squinty eyes and pinched face is placed in our arms.

  And still we daydream. We plot and plan so much of their lives and we try to make it all come true. I have no idea when they find out. How Autism is diagnosed exactly. When my own children were born, we really did not think about Autism. I doubt that is was even discussed in those days. Loud children that run amuck had lazy parents. Children who held their ears and rocked back and forth while making the noise of a banshie simply needed a nap or some self control. I am ashamed to say that I was on that bandwagon.

  From the bottom of my heart I am sorry. How ignorant and judgmental I was. I did not come from an understanding family. I was raised in a very black and white world and so I carried that into my own impressions of other parents and their children. Fool. What an unmitigated fool I was. When my own daughter had her son, I worried. I stood in the wings and I watched. I said nothing of course but I was vigilant in my studies. I did not know precisely WHAT I was looking for....but I looked just the same. Without any talk between us, my daughter was herself, on the same mission. Both of us hoping that we failed to discover any little thing. We Watched for eye contact, interaction, response to cues. It was emotionally exhausting. We finally named our fears over lunch one day, my child and I. So far the wheel of fate has been kind. I know that he will face challenges as will his parents and when they come, as they come we will do all that we can to reach for that never never land called "Normal."

  There is nothing like being reminded of our own vulnerabilities to empathize with others. And so it is that I have a new understanding of the wait. For tests and appointments for lab results and specialists. I am just a few months in and I already want to make it stop. I cannot imagine the strength, the sheer will that families that deal with these things on a daily basis face. All this to say, today is World Autism Day and it is important. Please make sure that you reach out to parents in this seemingly endless battle. And if you are one of those mothers or fathers whose roulette ball landed on the wrong color, know that we are with you. Hold on, hold fast, hold tight. You are a blessing. A gift to one special soul who needs you most. Also, know that we are all broken. Mine is easier to hide. We all have our own version of normal and none of us will ever be that shining dream sold to us all on the sly with no hope of a reimbursement. We are all in this together and so it is up to us to support each of these families when the  opportunity arrises. When we make their lives better, we make the world better.

8 comments:

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    1. Thank you sunshine. Love and strength to you my friend.

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  2. As the mother of a child with Aspergers, this made me cry. In a good way and in a sad way. Thank you!

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  3. Terri, I can never...no matter how many words I piled up, tell you my immense respect and awe I have for you and parents like you, fighting for your child. Learning to help him cope as well as you. The world can be hard. People are foolish. I raise my hand on this one. I am ever learning and in that moment, when that child was simply being a child just like any other and his mother relaxing her guard, well...It changed my heart. They taught me something and blessed me with those few short moments. Love to you Mama. You are strong and brave and a hero.

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  4. You were very kind to the parent in the story. As the mother of an autistic child, I know I would appreciate your tolerance of my son. It is true that I am fearful of how strangers will treat him. However, I want to assure you that I don't ask that you mourn for my son. While he certainly faces many challenges, I accept him as he is, autism and all. Normal is overrated.
    Thank you for doing your part to raise awareness of autism by sharing this story.

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    1. Cynk,
      I do not in any way mourn for your child. I mourn over the way some people treat those that are different from them. Out of either fear or uncomfortableness many people will not act out of the kindness in their hearts when dealing with a child who is different, or perceived as not"normal". I realize that you do not know me or my writing, but let me assure you that there is no normal. It is an ideal we are taught to aspire to. However as humans we cannot. We are each individually and perfectly formed to be exactly who we are. I was trying to impart my own lack of experience, even indifference to the issue of Autism. I had never really experienced any interaction until that day. It was a wake up for myself. To see this woman afraid at how I was going to react to her son. It broke my heart to see her expression. That is what I meant to impart. I am not t o be thanked for "tolerating' any child, no matter how they are born. it is not for me to be anything but loving and to care. That is what that experience taught me, to care. I do not feel sorry for you, I am amazed at the job you do. You are unnamed, little seen hero. And I am thankful that your child, just like that other child is blessed enough to have such a loving, caring soul in the form of mother. I am sorry this is such a long response, it is simply that, from the background I come from, different would have been cast out. Hidden, ignored and far worse. I had no role models to follow a far as what a loving parent looks like. It is that difference that captured my heart that day. Much love to you and your family Chele

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  5. If you were only my next door neighbor perhaps I cou;d breath again.

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    1. Well I mean, my neighbors are moving soon.....I understand. We all have people who truly challenge us in life, I know I do especially right now...I will write about it soon enough. Until then you can read here or over on Looking For My Escape, which has it's on fb page<3 thank you for your kind words sunshine. They are appreciated and much needed today.

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