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

New Year Resolutions For An Autism Parent

Wednesday, January 2nd, 2013

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

I don’t typically make New Year resolutions. Because I am never good at keeping them. But I feel like 2013 marks a turning point and changes need to be made. I don’t want to think of them as resolutions. I want to think of them as life style changes. But you can call them resolutions if you want. And I’m sharing them here because I think they may be helpful for other autism parents.

Sleep. I remember when my son Norrin was first born, everyone told me to “sleep when he sleeps.” I should have listened because it’s almost seven years later and I’m still tired. For the last few years, I’ve been going to sleep long after ten and waking up around five. It’s usually a broken sleep, since Norrin wakes in the middle of the night. I realize some nights it will be impossible for me to go to sleep at 8:30 but I want to try going to sleep early at least three nights a week.

Take time out.  Before I was a mom, I did stuff. I got my nails done, my hair done, I occasionally went out for after work drinks. But over the last few years it’s been really easy to lose myself.  It’s easy to to go months, years even, without a haircut or a manicure.  Or going out on a date with my husband.  Or out with a friend. I’ve had to tell myself that it’s okay to take a few minutes a day, a few hours a week or one day a month to do something just for me - without any guilt.  To do something that has absolutely nothing to do with being a parent or autism. Back in November, I went to movies by myself (to see Twilight) and it felt great to do something I wanted to do.

Take a lunch break. I work (outside the home) as an administration assistant. This means I sit at a desk. All. Day. Long. And lunch usually means me eating at my desk while I check emails or surf the net. I can go weeks without leaving the building during my work day. I need to make it a point to get out of the office and get some fresh air – even if it’s just for a walk around the block.

Unplug. I’m a social media mom. I sit in front of a computer all day at work. I often stay up late working on my laptop. And I love TV. Just like Norrin needs to have his screen time limited, so does mine. I need to work and can still be active on social media and still watch the TV I love but I need to learn when to step away from the screen – especially on the weekends.

Live healthier. I’d be lying if I said I wasn’t  worried about getting old. I can’t stop the aging process but I can try  to live as long as I can. When it comes to Norrin’s appointments and needs, I make sure he gets everything he needs when he needs it. I make the time. When it comes to my own appointments, I am much more laid back, I forget, I put it off. No more. I need to be better about making my own doctor appointments, taking my vitamins, getting some exercise and eating better. I cannot take my health for granted.

Do you see a theme here? I want to be the best parent I can be. And part of being a better parent is being a better, healthier, happier and less tired me.

So what about you? What changes will you make in 2013?

How A Group of Parents Are Shining A Positive Light On Autism

Thursday, December 27th, 2012

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

When it comes to autism, there are so many misconceptions and myths that need to be dispelled. I have learned to laugh some myths off. But mostly, I welcome questions. One of the reasons why I write is to share our experience to educate others. Because I want people to know what autism is and I especially want them to know what autism isn’t.

However the latest misconception about individuals with autism is nothing to be taken lightly. The idea that there is some link between premeditated violence and autism is not only false but it further perpetuates that autism is something to fear. To know that there are groups of people who believe that there is a connection is frightening. For our children to be vilified is heartbreaking. And for parents to be blamed for not ‘curing’ their kids autism is hurtful.

In a recent article by John Elder Robinson he writes, “There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group.  That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person. Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators. ”

While the percentage of people who believe there is a link between autism and violence is small, it’s enough for parents and advocates to come to the defense of autism. Or rather shining a light on the reality of autism.

Last Saturday when I woke up and checked my Facebook,  I noticed my feed was full of  friends (mostly autism parents) sharing all these beautiful photos of kids, teenagers, adults. All the photos had some kind of personal message about the person in the photo. All the photos were shared from a page called Autism Shines - a page created by autism parents.

In reading the messages, I was so moved. Not only by the messages on the photos but by the amount of shares, likes and comments of support. One mother showed the page to her son and he said, “I used to think I was the only autistic kid on earth. Then I realized there were others like me. I think there are some kids who don’t know they aren’t alone, but now they will know.”

In their effort to “show the world all the positive attributes of autism,” The Autism Shines Facebook Page welcomes anyone to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them.”

When I uploaded my photo of Norrin, the page had about 200 ‘likes.’ By the end of the same day – it had a little more than 1500 and the number keeps growing (it’s close to 3000 now). This is the power of community. This is autism awareness at its best.

Disciplining Kids With Autism: 3 Things To Remember

Wednesday, December 5th, 2012

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

I was raised by an old school Puerto Rican mother who believed in tough love. She was quick with a slipper and quicker with her hands. She moved so swiftly, you didn’t realize you were given a cocotazo, until you felt your scalp stinging. Needless to say – I got the slipper and cocotazos often. I also went to Catholic school. I was a chatty kid and I spent most of my grade school years with tape on my mouth or sitting alone in a corner. It wasn’t considered abuse. It was discipline. And it was the early 1980s – no one cared.

I don’t believe in spanking my son, Norrin. And I would be horrified if any teacher put tape on his mouth to keep him quiet. But it’s 2012. And the idea of discipline has changed.

A few months ago, while at a friends home Norrin misbehaved and I guess my response wasn’t enough. We were asked to leave (kicked out, actually – but that is a whole other blog post). I knew that my friend felt I should have disciplined Norrin. And later, my friend made sure to tell that it was the third time (over several visits, not that same day) my son had misbehaved and that such behavior was unacceptable in his home.

Kids with autism don’t often get things by the third time. It took us months to get Norrin to point his finger. Years for potty training (and at almost seven years old, he still wears pull-ups at night). It takes a long time to teach Norrin most things. Eventually he gets it. In his own time.

So how does an autism parent discipline their child? How do we teach them that some behavior – hitting, yelling, throwing – is simply not acceptable?

Back in the Early Intervention days, ABA therapists told us to ignore negative behavior and redirect. Most parents can get away with ignoring and redirecting the negative behaviors of a three-year-old. Ignoring and redirecting a seven-year-old exhibiting negative behavior  – all adult eyes are on you. And they are judging.

I decided to try something new. (Well, new for me. You may be doing this already.) I made up a list of “House Rules.” I got the idea from Norrin’s teacher after she gave me her list of class rules. Now, when Norrin breaks one of the house rules, I point him to the list. I ask him to read it out loud. I talk to him about right and wrong. And then I redirect him. If he corrects the behavior, I give some kind of verbal praise and a hug. If he does not – I take something away (like the iPad). So far, it seems to be working. (I’ll keep you posted.)

The thing is, when it comes to disciplining Norrin, most of the time, I am at a loss. Some days he gets it. Some days he doesn’t. And it’s hard to know if I’m doing the right thing.

But this much I do know (because I’ve learned the hard way):

• What works for parents of “typical” kids, is probably not going to work for yours;
• Screaming at your kid while he’s in the middle of a meltdown isn’t the right time to teach anything; and
• They need you to be patient.

How do you teach discipline to your kids?

The Do’s and Don’ts of Holiday Gift Shopping for Kids with Autism

Wednesday, November 28th, 2012

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

In a few days it will be December, and the stores and streets are all decked out in glittery holiday cheer. Maybe you’re planning on starting your holiday shopping early. (Though if you’re anything like me, you will scramble around at the very last possible second.) And maybe there’s a child with autism in your life and you’re wondering what to get him or her. It’s always challenging to find the “perfect” gift for anyone, but shopping for kids with autism can be a little tricky. So I thought I’d share a few do’s and don’ts that will make everyone happy this holiday season.

DO ask the parents what the child is currently into—even if you think you know. Kids with autism are kids first. And like most kids, they change their mind often.

DON’T question what the parents suggest (unless they suggest a pony). Kids with autism tend to be very specific. If a kid asks for markers, chances are they really want markers.

DO think about educational purpose. Parents of kids with autism or any other special need do not buy toys or games that don’t serve a purpose. Think about the educational or therapeutic value of the toy or game. And don’t think you need to break the bank with educational toys or go to a specific store or website. There are local stores that offer great options at reasonable prices.

DON’T pay attention to age-appropriate suggestions on boxes or grade level reading on books. When buying anything for kids with autism, it is absolutely critical to think about developmental age rather than chronological age. The other day I was talking to a friend and I told her that Norrin has been asking for the Handy Manny Tool Set. And my friend asked, “Isn’t that a little babyish?” Norrin will be seven in January. And I’ll admit, I thought the same thing too. But if a Handy Manny Tool Set will make him happy, then so be it. It will encourage imaginative play and that’s what we’re currently working on.

DO think about the parents’ sanity. If you purchase a toy with some kind of music or talking—please make sure there’s an on/off switch. PLEASE. And if the toy or game you purchase requires batteries, you may want to include a pack with your gift, just in case.

DON’T think of clothes as an option. Kids with autism often have sensory issues. Specifically, with jeans and shirts with tags—because even if the tag is cut out, it will still not work. What is slightly uncomfortable for us can be absolutely painful for them. And anything with buttons, buttons can be really hard for kids with autism to manipulate.

DO make it easy (for everyone) with a gift card. I always hear that gift cards are so impersonal. Not true. For special needs families, gift cards are always a great option. A gift card empowers the child to make his or her own decisions. If the family has an iPad, an iTunes gift card is a great gift. Many kids with autism use their iPads for therapy sessions and for communication purposes. And the apps required can add up. Remember, you can always personalize a gift card by pairing it with a favorite kind of candy or snack.

Ultimately, it doesn’t matter how much you spend, it really is the thought that counts. So be creative. Think about the child and what the child would like. Because a great gift for a kid with autism could very well be a roll of bubble wrap, new LEGO blocks, a book about insects or an afternoon riding the train.