Posts Tagged ‘ National Autism Awareness Month ’

The Six Degree Project To Raise Autism Awareness

Thursday, January 10th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

National Autism Awareness Month may be in April, but The Six Degree Project is a grass roots student organization passionate about taking autism awareness to the next level. With the collaboration of Carly Fleischmann, Emily Albert and Mia Kibel, the goal of the project is to get people talking about autism outside of autism awareness month.

Working off the basis that we’re connected to everybody in the world by six degrees of separation, the students picked 12 celebrities they feel the people in their communities might be able to reach: Jimmy Fallon, Ellen Degeneres, Justin Bieber, Brad Pitt, Dr. Phil, Ernie Els, Whoopi Goldberg, Kelly Ripa, Travis Stork, Anderson Cooper, the cast of Saturday Night Live, and Ryan Seacrest.The goal is to prompt these 12 celebrities and more to wear a blue scarf in February to show their support for autism and educate people as to why they’re wearing them. Since these celebrities are often the centre of media attention, the students feel it will get people talking about autism and increase overall awareness of the disorder.

The Six Degree Team made this really awesome YouTube video – you can watch it HERE. (It explains the project in more detail.) When I watched it, I got a little emotional because it’s truly inspiring to see a group of teenagers working to make an impact.

I appreciate National Autism Awareness month, I am grateful that we have an entire month dedicated to raising awareness. But for me and for so many other autism parents and autistic individuals, autism awareness is every single day, not just one month out of the year. And in the aftermath of the Sandy Hook tragedy, the autism community needs this. We need positive awareness. We need support. We need your help.

The average person on Facebook has between 120 to 245 friends…and you never know who your friends are Facebook friends with. I mean just a few weeks ago, I discovered that I have a three degree separation from Tom Cruise. And earlier this year, I learned that Amanda Seyfried is the first cousin of my former coworker. And doesn’t everyone have a some degree of separation from Kevin Bacon? By sharing, tweeting or posting about The Six Degree Project YouTube video you never know who it may reach.

But you don’t have to have a known celebrity connection to participate. You don’t even have to know anyone with autism. Autism awareness is a two way street. You just have to be willing to learn, show your support and meet us half way.

I am excited to order my blue scarf and I will wear it proudly.

For more information on The Six Degree Project visit them at http://thesixdegreeproject.com.

Image: Screen grab, The Six Degree Project

 

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Parenting Autism: Never Underestimate My Child’s Potential

Thursday, April 26th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Emily Willingham, an autism parent, science writer and self-described “compulsive biologist” who blogs at The Biology Files and Double X Science. She also is author of The Complete Idiot’s Guide to College Biology and science editor at the Thinking Person’s Guide to Autism.

What autism means to me and my family:

I can’t say how autism stands out as having meaning in our family because it has always been a part of our family. It’s just a part of who we are, of who my son is. We don’t know anything different, and we aren’t particularly interested in knowing anything different. What we do find is that because of autism, we have become educators and advocates in ways that we hadn’t anticipated before we had children.

My child is awesome because…

My son is passionate about many things, including acorns, science, Pokemon, reading, Mario Bros., Mystery Science Theater 3000, and nature documentaries, but he’s awesome because he is effortlessly the funniest person I’ve ever met.

Three things I want other parents to know about my kid and others like him are…

1. Never underestimate his abilities. 2. Never underestimate his potential. 3. Never underestimate him.

One misunderstood thing about kids with autism is…

Many people have an impression of autism as a monolith or as two populations of people, those who are like Rain Man and those who are like Temple Grandin. In between and on either side of those high-profile representations of autism are a million gradations, and a person’s place on the autism spectrum can itself vary from day to day. As my son says, some days are more autistic than others.

Some of the best things I’ve found to help my child are…

Being there for him, using my instincts to understand him, having patience and waiting for the right moments for specific activities, conversations, and interactions, working always to understand what his behaviors are communicating to me.

My most effective parenting strategy is…

The same as the best thing I’ve found to help my child–being there for him and always focusing on what his communications tell me about his needs. One of the best decisions we made as parents was to homeschool him because I can adjust every day to his specific in-the-moment needs, cutting back on certain things on his more unfocused days, homing in on weaknesses like anything related to executive function and really taking time with it, speeding through the things that he grasps immediately, and always being able to separate the social and the academic so he can focus on each appropriately.

One of my favorite stories about my child is…

We were walking through a pretty empty mall for indoor exercise one rainy day during homeschool, and he was hanging on my arm as he always has done and continues to do. It gives him support because of his low muscle tone in his trunk, and he also likes to squeeze my arm a lot. A lot. As I often do–and as he appreciates–I said to him, “You sure are my barnacle today,” and he responded without missing a beat, “Shhh. Quiet, Mama. I’m filter feeding.” See? He’s funny.

 

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Parenting A Kid With Autism When You Have Autism, Too

Thursday, April 19th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers. Today’s post is from Carol Greenburg, executive director of New York Special Needs Consulting. Carol is a special education consultant with a unique perspective: she is an adult with Asperger syndrome and the mother of a severely language-delayed autistic child. She is the East Coast Regional Director of Autism Women’s Network, a frequent speaker at conferences, universities and community-based organizations, and an editor of the site and book The Thinking Person’s Guide To Autism.

What autism means to me and my family:

One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages  teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too.  He notices when I get into trouble, and without my even having to ask him, he passes along skills that I never mastered, especially in motor planning, an area in which he’s conquered many difficulties that I still haven’t. It’s been much easier for me to put my shoes on correctly since he’s started teaching me what he’s been taught. Sometimes non autistic people are amused when they see a highly educated, verbal person like me struggle with simple motor tasks that come easily to most adults. My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.  I suspect many parents have to wait until their children are grown to experience that kind of reciprocity.

Three things I want other parents to know about my kid and others like him are…

Alone time is critical,  not just so that my son can avoid sensory overstimulation, but also because he needs quiet or even stimming breaks so he can deeply process all he’s observed or been taught on any given day.

Assume empathy. Despite reports to the contrary,  most of us are as empathetic as typically developing people, and I believe my son has a surplus of that quality.

When my child breaks something or pushes another child, he faces consequences. If he behaves in an unusual way  that is not hurting anyone or anything, I don’t apologize for him, or expect him to apologize for himself. I cannot imagine raising a confident child in an atmosphere poisoned by shame and self-loathing. When others have a problem with nondestructive, unaggressive evidence of his or my autism, it is their problem, not ours.

One misunderstood thing about kids with autism is…

There’s an assumption that the less verbal a kid is, the less independent they are in daily life, even if they need intensive support in school, as my child does. I suspect that talking is the single most difficult task that’s consistently demanded of my child. To compensate, he has learned how to do things at home for himself because he finds it easier to solve his problems quietly and creatively himself than to formulate a verbal request. He’s all action, very little talk. When a typically developing friend complained about the impossibility of reaching a cup on a high shelf, my son just got a stepladder and delivered the cup to his friend. Of course it’s important to encourage as much speech as possible, but I’m still really proud of him for cultivating self-sufficiency to cope with his language delay.

Some of the best things I’ve found to help my child are…

My son not only enjoys music and physical activity, they also help him self-regulate and regain focus. Both are inexpensive DIY coping mechanisms to address anxiety and promote focus.

My most effective parenting strategy is…

Autistic people are so often patronized or treated like we’re invisible, many of us have not experienced what it feels like to be approached with respect. So my husband and I try to consciously teach my son the concept by treating him with respect and by making a special effort to treat others with respect in his presence.

One of my favorite stories about my child is…

It’s just too hard to choose, so I’ll just offer up this week’s excitement. A few nights ago my son did something that reminded me to alway assume his comprehension. He needed a  haircut and I said so in front of him. Before I got around to taking him to the barber, he became rightfully impatient with my dilly-dallying and cut his own hair in the middle of the night. The action was his, but the responsibility for it was primarily mine. As we surveyed the bald patches the next morning, his only comment was “Not going to the barber.” I advised him not to jump to any conclusions about that. One buzz cut later he looks like a tiny,but noble, Marine. Semper fi.

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Better Autism Parenting: One Dad’s Secret

Monday, April 16th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s post is from F. Lewis Clark, who writes Big Daddy Autism. He’s been called “The Dave Barry of Parenting.” As he notes, “I’ve also been called morbidly obese, ego-maniacal and kind of gross.”

Always real, ever funny, his stories portray how an ordinary dad makes the most of life with a teenage son, Griffin, who has autism. He is also the author of Big Daddy’s Tales From The Lighter Side Of Raising A Kid With Autism. The following is an excerpt from his latest e-book, Son of Big Daddy (a collaboration with blogger Lynn Hudoba) and is available on Kindle.

Griffin, my fourteen year old son, is autistic. I could sugar coat it by saying he is merely developmentally challenged or gifted. But the truth is, no matter what label we use, Griffin is significantly disabled by this perplexing disorder. Autism is a huge part of our lives.

One morning, about a year or two  ago, Griffin said to me,

“Daddy!  I dream last night!”

That got my attention. Up until then I didn’t even knew if Griffin dreamed. Of course I suspected it. However, he never told us he did. It was still a rarity for him to talk about something as abstract as a dream. So I pressed the subject by nonchalantly asking;

“Oh yeah? What did you dream about last night?”

Without hesitation he blurted;

“Last night I dreamed Barney was at the Weather Channel talking about severe weather alerts in the Northeast! Do you believe that?!?”

Yes I did and I still do. It may be odd that my teenage son dreams about an imaginary, purple dinosaur broadcasting storm alerts. But this is my life. In spite of the fact that it is not always easy, life with Griffin is, humorously bizarre. We believe the only way to approach it is to kick back and enjoy the show.

Griffin loves elevators, Wilford Brimley, and the Weather Channel. He has embraced these simple pleasures with the same passion some kids reserve for their favorite sports teams.

Griffin’s infatuation with the weather started after Hurricane Wilma blew through Florida. His fear of thunderstorms has been incredible ever since. Desperate for anything to ease his anxiety, we thought if he could see weather reports and know what’s coming, his angst would be somewhat allayed. So we introduced him to The Weather Channel. It wasn’t long before Griffin became a weather junkie.

While being constantly tuned into the weather has done nothing for his trepidation of thunderstorms, it did give him something to talk to his family about. Obsessively.

During one recent squall, Griffin hunkered down in the closet and sobbed about how much he wanted to be storm chaser. When his mom, Mrs. Big Daddy, calmly explained that storm chasers don’t hide in the closet when it drizzles, he nearly vomited. Since crying so hard you puke is not what the Weather Channel is looking for in its on-air personalities, our plan for Griffin becoming the next Al Roker seems to be fading.

In a way, being told your child is disabled is a death. A death of what you had planned for your life. Griffin has taught us that getting too attached to having things go as you planned, is a recipe for disappointment. By accepting that we have little control over our futures, we spend more time living in, and enjoying, the present. Even when it rains.

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Sibling Double Standards And Kids With Special Needs: “It’s Not Fair!”

Thursday, April 12th, 2012

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Jana Banin of I Hate Your Kids (And Other Things Autism Parents Won’t Say Out Loud). Jana, a magazine writer, is mom to Benjamin, 8, who has autism, Zack, 6, and Ayla, 2.

“It’s not fair!” Like many six-year-olds, my son Zack utters this phrase at a deafeningly frequent rate. The thing is, most of the time he’s actually right. Spend a couple of hours in our house and it’s easy to see why. Here, a few examples from a typical evening.

5:00 pm: Zack does homework while Benjamin, his 8-year-old brother, is sprawled out on the sofa watching TV.

5:45 pm: If he’s racked up enough points on his behavior chart, Zack is allowed a timed session on the iPad. Benjamin, on the other hand, has had constant, unlimited access to the thing from the moment we walked in the door.

6:30 pm: Zack would not be eating dessert if he hadn’t tacked a “please” onto his request, while all Benjamin had to say is “I want cookie.”

6:32: While Zack, with the focus and precision of a surgeon, is busy turning two Oreos into one giant Oreo, Benjamin swipes a piece of his project. Zack receives a replacement cookie, but Benjamin gets off scott free.

6:35: Benjamin washes the treats down with a swig from his baby sister’s sippy cup. When Zack tries to do the same thing I stop him. Serious whining about the injustice of this ensues, and I sternly tell Zack to move on.

No, I did not mistake Cinderella for a parenting manual. I treat my children differently simply because they are two very different kids. Zack is a typically developing kindergartner who has to follow the rules And then there’s Benjamin, who has autism. The rules generally just don’t apply to him.

* Benjamin works crazy hard in school and with his home therapists, but he isn’t in a place academically where he’s coming home with very many worksheets or projects.

* Left to his own devices Benjamin would spend his down time searching for things to eat and/or destroy. We’d much prefer he hang out in front of a screen—especially if that means playing educational, age-appropriate games on the iPad.

* Benjamin is, miraculously, finally verbal enough to ask for what he wants. For now that’s good enough for us. The pleases and thank yous will come soon, I’m sure.

* And punishment, well, that’s a tricky one. We are fairly certain that when Benjamin, say, wakes up at 4 in the morning and tears through a box of brownie mix he knows he’s done something wrong. But for whatever reason—maybe because his social deficits impede him from caring about what we think, or because his impulses are so hard to control—punishing him just doesn’t work. He’d do the exact same thing 20 minutes later if he knew he could get away with it again. We’re working with his therapists on coming up with modes of discipline that will be effective and meaningful to him, but it’s still a work in progress.

Sometimes I feel incredibly guilty about my double standard parenting, and other times I’m just too busy trying to get through the day to give it much thought. Overall, though, I’m sort of happy this is the way it is for Zack.

My kid is learning earlier than most of his peers that life isn’t fair–and he’s developing the tools to cope with and be okay with that. More importantly, he’s also learning life is also unfair for kids with special needs. He knows how hard it is for Benjamin to express himself, make friends, and learn things that come naturally to most children. In other words, Zack is already more understanding and empathetic than a lot of adults out there.

Of course, autism doesn’t always inform my parenting decisions.

“How come Benjamin is downstairs?” Zack asked as I tucked him into bed the other night. “Why doesn’t he have to go to bed at 7:45 like me? It’s not faaaiiiiiir!”

Zack was wrong–it was fair, and I was thrilled to tell him why.

“Benjamin’s older than you. When you’re 8 you’ll get to stay up later too.” And that was that.

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