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Posts Tagged ‘community’

Training Staff in Community Programs

July 18, 2011 3 comments

As a result of increased awareness about autism and strong family advocacy many more people with autism are attending community-based summer programs.  An important ingredient to a successful experience is the staff at the community program, their understanding of autism spectrum disorders, and the unique strengths and challenges of your family member with autism.  How have you shared this information with agencies  or  community program staff?  Do you use a formal training program?  A written document?  One-on-one time with the staff?  Share your experience and make it easier for others going into new community settings this summer.

The Incredible Edible Egg

August 17, 2010 5 comments

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

Autism Speaks’ approach to advocacy in both our Federal and State-based legislative initiatives uses a specific formula – our “cookie recipe.” My last blog focused on flour, representing our grassroots effort, as one of the most fundamental ingredients for any cookie recipe.  While flour creates a foundation for the cookie, other essential ingredients are required to make the final tasty treat.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently but when we follow this tried and true recipe, we celebrate with a big, batch of cookies.

In our recipe, eggs represent the unity and focus in our community.  Just one egg has 13 essential nutrients and while the cost of other foods skyrocket in today’s economy, the simple egg remains one of nature’s best bargains with regard to high-quality protein foods. Eggs consist of two basic parts held together by a fragile shell. Outward appearances indicate that the fragile egg is contained and unified.  Once you crack that shell, you can see those separate distinct parts – each part of the egg serving a different, but important, purpose for the egg as a whole.

When baking, we know that to move forward and make a great cookie, the egg must be whisked to unify its distinct parts so that it can do what it was meant to do for the cookie overall – serve as a bonding ingredient – unifying the flour, sugar, butter and pinch of salt.

The “egg” in our recipe represents the autism community’s unity and focus on the legislative initiatives we work on to improve our children’s lives. Before we take a crack at these initiatives, we are held together with our fragile shell that unifies us – our children who have autism.  As we move through the process of working on these projects, we crack that egg to find different parts inside – parts of our community that all serve essential purposes.  Parts which, when working separately, would not have the same effect as when they are whisked together in unison and focused.

Every time our family bakes anything, Liam and Mairin argue over who gets to crack and whisk the eggs.  To them it is more fun than measuring out the other ingredients.  It is for me, too.  Over the last three years, I have enjoyed nothing more than working with a variety of different people in the autism community who hail from different philosophies on how their children developed autism, how autism should be treated not to mention the different socio-economic statuses, educational levels and backgrounds.  I love working to whisk them all together and make that “cookie’s” ingredients blend successfully.  I have witnessed firsthand what a unified community can accomplish when they refuse to be divided.

Unity for the autism community is a fragile egg indeed.  But it is a low-cost, big -bargain, high-protein source that should fuel us, bond us and make us better, and more incredible, than we would ever be without it.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


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In Their Own Words – Hanging My Hat on Hope

January 31, 2010 3 comments

The 10th Annual Long Island Walk Now for Autism Speaks Awards Reception took place last week. It was a wonderful evening of celebration, not just because of the money we raised – over $1.4 million – but because of the people that came together to make a difference in the autism community. The night was about Brendan, Eileen, Joseph and all of the kids and adults affected by autism. This is a very special community and I am honored to be a part of it.

Unfortunately, there is a lot of divisiveness in the autism community in general, a lot of dissension, a lot of “my way or the highway” mentality. It is a funky energy that often baffles me. I believe it is rooted in the overwhelming passion that families have for their loved ones affected by autism. They face indescribable challenges, from the seemingly mundane to the enormous. They are desperate for answers. And the majority of society doesn’t get it. Most people don’t have a clue about what living with autism 24/7 is like. Add sleep deprivation to the mix, and there are powder kegs of emotion everywhere.

The flipside to the conflicting opinions, and the thing I hang my hat on, is hope. My hope for the community is rooted in the one thing that unites us, the bedrock and the common foundation for all of us – our loved ones. So we can be on very different sides of the fence – pro–bio–medical or pro–science, pro–vaccine or anti–vaccine, pro–GFCF diet or anti–GFCF diet, genetic or environment – but we are all in the same backyard, encompassed by the same fence.

All parents of children with autism – child or adult – that I have met are most passionate about their children. No matter what side of the fence they reside on, or if they are on the fence at all, or in neutral territory (like Switzerland); they are driven to make the best life possible for their children. They are hopeful.

That shared hope is what will unite this community in the long run, because no matter what your beliefs about what causes autism, we are in it for our children. The autism debate comes down to this – Danny, Tom, Kelly, Tyler, Brendan, Kevin, Jackson, Christian, Kerry, Nicky, Jonathan and countless others. They are individuals with names, faces, lives and families who love them. Call me an optimist – which I am – but I truly believe that under all the debates and arguments and contrasting opinions, the love and passion for our children will rise to the top and bring us together.

I believe that opposing sides will one day meet at the fence and that the first questions they ask each other will not be “What do you believe causes autism?” Or “Why don’t you believe what I believe?” It will be “Who is your child? Whom do you love who is affected by autism? Who are you fighting this battle for?” So that we begin at the beginning, and uncover our commonalities before we begin discussing what divides us.

Someday, we will have the answers we seek, no matter what path was traveled to find them. Some day … I “have a dream” that someday we will be a united community, not always in agreement, because that would be boring, but united in our passion for our children, or anyone we love affected by autism. I have a dream that someday, there won’t be a fence.

This “In Their Own Words” essay is written by Rose Ann Walsh of Northport, N.Y.

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: Welcome to the Community

January 22, 2010 1 comment

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Henry. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Henry starts to act up.

I took a deep breath and turned to the mom.

“Hi! My son Henry was diagnosed with PDD-NOS a few weeks ago. We do live in town. In fact, I’ve seen your son at the preschool that my son attends. How long has your son attended classes here?”

It took everything I had to have that conversation, but it was such a relief. This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Henry buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

This week’s “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

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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