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Practical Matters: Adventures in Community Access
Posted on May 21, 2014, by GAPMP
Out of School, Out in the Community, What Was I thinking?
By Jane Grillo
I want to share one of my favorite parenting e-zines. Parenting Special Needs magazine is a FREE monthly online resource. Though I don’t typically prefer electronic vs paper publications, this one has so much good information in it, I put up with adjusting the viewing and listening to the silly page turning sound (which I mute). I wanted to post this article (Going Places: Improving Participation in community Activities) because I know how many of us struggle with trying to provide summer inclusion opportunities for our children.
Look for the Parenting Special Needs magazine link below to subscribe.
Look for Going Places link to read the article
I also have some “Going Places” observations from some of our parent mentors to share:
I asked mentors to respond to the question: How do you handle being out in public with your child with a disability?
Becky Tracy from Union County wrote:
When I see a person staring at us when we are in a store, or at a sporting event it does make me uncomfortable. I know they are staring because Trevor is making nosies, quoting a movie or a commercial, or asking for the same thing over and over. More times than not I will smile at them and say ” He has autism and somethings overwhelm him when he does these things, they are like ticks or ways to calm himself. I just act like it is something they should know. Usually they smile and act like they weren’t staring. And then I smile. I feel like it makes me feel better to put their mind at ease.
I have spoken to many individual classes and explained autism to the younger students. I like to tell them that being curious is natural. If you see a person in your class with a cast on their leg, you may stare at them all day wondering what happen to their leg? But once you ask them, and they tell you they fell off their bike, the curiosity is gone. I also had Trevor give a speech a few years back to the entire elementary school on autism.
Editor’s note: Click on Becky Tracy’s name to link to her page. She has a wonderful youtube video of her son doing one of these speeches. She will probably be willing to share it if you contact her via email.
Edith Abakare from Atlanta Public Schools wrote:
From the TSA Agents to the fitting room clerks in department stores we have experienced it all.
I answer all questions from kids. I do this because it brings awareness to the next generation. If a child is rude then I share the, “If you fall off a curb or trip u may find yourself in a similar situation” story. Parents are usually apologetic when their children ask questions. Somethings, I simply ignore.
I handle the adults differently. I usually get very close to the person and whisper to keep from embarrassing them.
My greatest story is this.
Asher was wearing a A cast on her body thigh downward. I carried her into a very busy restaurant and sat her down. We were meeting a close family friend. As we began our meal, I noticed two women at a nearby table were just staring. Then, ne lady calls out loudly, “What’s wrong with that baby?” I turn and looked at her and simply replied, “Nothing”.
My friend said that was such a nice way to handle that situation.
My last one is from an anonymous writer. One of our mentors posted this on our listserve and I had to share:
Dear Shopper Staring at My Child having a Meltdown in the Grocery Store,
Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.
This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.
Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.
My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.
Who knows? Maybe I’ll get to see the one hidden behind yours.
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