Monday, March 10, 2014

Starting a Conversation: A Shirt for a Cause

Every April 2nd we at Autism Speaks get together to “Light It Up Blue” for World Autism Awareness Day.  Our goal is to reach as many people in the world as we can with our message; to start a conversation. We want people to ask about the color and then hope it leads to a dialogue about autism.

Now, as much as I love this initiative, I always ask myself, what more could we do?  How do we keep this conversation going all year long?  This is why what Sevenly is doing is making a difference in our autism community. Sevenly, for those who don’t know, is an organization focused on raising funds and awareness for the world’s greatest causes & charities.  They produce high quality, limited edition awareness products.

Ever since our partnership with Sevenly began they have done a remarkable job of spreading awareness of autism. With the charity collection on their website, they promote messages such as “Live Loud for Autism”, “Unconditional Love” and “Different Not Less” to name a few. These messages have appeared on the shirts in their collection over the years.

As a self-advocate, I often speak throughout the country on the topic of autism.  I like mentioning Sevenly because their products in these collections spread autism awareness.  Every time someone puts on one of these shirts, and they are seen in their communities, the message is spread loud and clear.  From a fundraising stand point, the fact that Sevenly donates 7 dollars to their charity’s for each shirt sold (including Autism Speaks) is icing on the cake!


The majority of the families I know, who have an individual on the spectrum, have one of these shirts. A mom I know from Chicago owns 7 shirts. Another mom from Boston owns 12. It goes to show that not only are these shirts awareness catching but also pretty stylish. People want to wear them (including myself).

So as our awareness effort moves forward I’m happy to know that Sevenly has our backs. I can say personally that when people help support our cause it also makes life easier for people like me. There are still so many people out there that have no idea of what autism is and that can sometimes mean a great deal of ignorance towards people like myself.

With Sevenly’s support, and our support of them I hope we can keep this vital conversation of autism going. With 1 in 88 individuals being diagnosed with autism the more people we have behind us the better off we will be!

You can learn more about Sevenly and their charity collection here.

Tuesday, May 21, 2013

Celebrating You: What Color Is Monday Review


Carrie's book is available on Amazon 
and Barnes and Noble
Many books out on autism today are focused on the negatives that autism bring an individual; both someone affected by the disability and for those people around them. Then we have the book “What Color is Monday” by Carrie Cariello.

Carrie who I was just introduced to a few weeks ago is the mother of 5 from New Hampshire. Her second child she had, Jack, was diagnosed with autism. In her book, she discusses her journey with her kids and what she has learned from being an autism mom.

I’ve done several book reviews before and have seen both positives and negatives out of each review but what I think makes Carrie’s work here special is her authenticity. You can tell within the first pages of her book with a personal letter, she wrote that she was giving you the uncut version of her experience. You won’t get a Hollywood underdog story from her book, but you will get a real depiction of autism. That is something that makes her book special.

Carrie’s not looking here to be a celebrity and look for credit for her wonderful work but to connect with the readers. Whether you are an expert in the field, a parent of someone affected by autism or just someone wanting to learn more about autism you can’t go wrong by giving this book a look.

Among the topics Carrie discusses are IEP Meetings (which I’m sure many of you autism parents reading this absolutely love beyond belief) how to coordinate for a child with autism, making time for yourself and much more! I think my favorite part of the book though has to do with a chapter titled “Making Progress: Stretch, Don't Break”. What she uses as a metaphor is to challenge your kids like they were a rubber band. You need to test them to try new things (stretching the band) but need to know it’s limits to make sure you don’t go too far (breaking the band).

This hit home for me respectively in my own development growing up on the spectrum. When I was a kid, I never wanted to do anything but hang out in my room and watch Teenage Mutant Ninja Turtles. After time though my mom knew that I was capable of more than I was putting in. She began by getting me involved with pee-wee sports and then started coming up with reward systems to help give me incentives for putting in the effort. I could connect with Carrie’s type of parenting here because it reminds me so much of my mom. They both have been able to respectfully find a medium where they could stretch us while understanding to not over do it.

Knowing so many others on the spectrum I can say they will most likely be able to find a similar connection by giving Carrie’s book a look and will also applaud her effort towards focusing on the positives. “What Color is Monday” is as much a journey about a mother with her children as it's a celebration of being exactly who you are and throwing the word “normal” out the window completely.

I commend Carrie for her effort here for her debut novel and hope you will join me in following her future work!

*You can learn more about Carrie by checking out her blog here. You can find a list of my favorite autism books here.* 

Sunday, April 28, 2013

Guest Post: Mother Finds an "Ability" in her Autistic Son

*This guest post is from Courtney Barnum from the facebook page "A Legion for Liam" and the blog My Life With My AuSome Son. Courtney is the mother of Liam, a 7 year old on the autism spectrum. This post is dedicated to Courtney finding an amazing ability in her son. Also check out our new promotion on Paper Clouds Apparel where you can help fund a scholarship for an adult to attend college!
Hans Asperger has been quoted as saying, "For success in science and art, a dash of Autism is essential." LOVE this quote. I like to think Liam got his artsy fartsy side from me, and autism. While pregnant for Liam I was working as a tattoo artist, but soon was pulled from work because my pregnancy was deemed high risk.
I sat and dreamed for hours a day (when I wasn't vomiting my brains out) that my baby would love art like I do. To me it didn't matter what the canvas was. Paper, wood, metal, skin. I have always wanted to make it more beautiful with my art, and I prayed my baby would be the same when he/she was older.
Liam started drawing at 12 months old. It was all scribbles, but he was happy. Right away he rejected coloring books. He NEVER wanted to color someone else's art, he wanted to make his own. So we stocked up on white paper, and construction paper.
It has been amazing watching his art go from scribbles and scrawls, to people and animals. They are always very abstract. For awhile, he would choose one color and only use that. His first TSS (I miss her so) made him experiment with other colors. Through many tears, and many prompts Liam discovered that more than one color was fun. And an artist was born!
Artist hard at work.
I started a folder on our A Legion For Liam page and started posting his art. (you can view that HERE) One pic in particular caught Robert's eye, and he commented how art like that was what he at Paper Clouds Apparel was looking for. Liam felt so proud to be recognized by someone, so I contacted Robert and asked him all about his vision and Paper Clouds Apparel.
Once I heard that all we had to do was send in some of Liam's art, then choose a non profit group of our choice for part of the proceeds, we were in! Liam worked hard for a week creating different pictures, and we sent them off to Robert.
(The art that got Liam "discovered." This is his interpretation of he and I in town. He is on the left with his ear muffs on. He drew this for art class when he was asked to draw a picture of a busy town.)

This is one of Liam's drawings being promoted on the shirt. Check out our promotion which begins Monday 4/29 and ends Sunday 5/12! 50% of the proceeds will go to help fund a scholarship for an adult with autism to go too college. Check out PaperCloudsApparel.com for buying information! 
Choosing a group for our campaign wasn't hard. I had just discovered Kerry Magro on facebook and was so inspired by all he does as an advocate and a voice for Autism. I contacted Kerry and put him in contact with Robert, and that was that. Kerry started KFM Making a Difference. A non-profit corporation focused on consulting and working on affordable housing projects for those with special needs. He also has a scholarship program for Autism! Now that is AUSOME!

Now came the hard part, waiting for our campaign to be ready and promote. I couldn't wait to see Liam's art on the tees. When Robert sent me a few shots from his phone during the photo shoot, I was ecstatic and Liam was jumping with excitement!

Another great reason to be involved with Paper Clouds Apparel, is Robert hires Special Needs adults to work for him packing the tees. The more tees Robert sells, the more jobs for special needs adults. How AUSOME is that???? I love when Robert posts pics of the adults he works with. They always look so happy and so proud of what they are doing. It makes my heart smile!
I feel honored to be a part of such a great organization. Liam feels "cool" because it is his art that is on the tees. That must feel really cool for him. So, open your heart, and please open your wallet, and purchase at least one of these AUSOME tees. You will not only be helping special needs adults get a job, but you will be "donating" to KFM Making Difference. I would say you will be "killing two birds with one stone" but Literal Liam hates that saying because he thinks you will really kill two birds. Instead you are helping 2 great organizations, and making a little boy smile.
(The shirts are $18 for the Children's shirts. Then $24 for the 100% cotton shirts and women's tank tops and then $27 for the super soft, sensory friendly tri-blend shirts.) (50% of the profits go to KFM Making a Difference.)

Tuesday, March 12, 2013

A Mother's Passion: Making Autism A Household Name In New Jersey


*This guest post is by my friend Johanna Burke. Johanna spoke at an Autism Speaks Awards Event last February which I had the opportunity to attend. For this post she has offered to share her speech and story with our community.

 Johanna has been walking for Autism Speaks for the past 8 years with her community of Hawthorne, NJ. She became a member of the Northern NJ Autism Speaks Community Awareness Committeee in 2010 and is currently the Publicity Chair along with actively being involved in promoting autism awareness. Johanna will not stop until autism is a household name in NJ. In addition she is the captain of "Team Hawthorne United" and her walk team has raised over $100,000 over the past 8 years for Autism Speaks.*

"Good evening and welcome to the Northern NJ Autism Speaks Kick-off event. My name is Johanna Burke and I am here to tell you why I walk for Autism Speaks Northern NJ. I hope my story inspires you, motivates you and encourages you to get out there and make a difference because 1 in 88 cannot wait anymore. We are all in this together and each and every one of us in this room can and will make a difference in our children’s lives.
Autism. I had never given this word a second thought, up until 8 years ago when my oldest son, Aidan, was diagnosed with it at 2 years old. My Aidan just turned 10 years old on February 9th. Still there is not a day that goes by without me thinking about it. Sometimes not an hour goes by without me thinking about autism.  So why do I walk. I walk because:

Today-Autism affects 1 in 88 children nationwide; 1 in 54 boys, making it more common than childhood cancer, Juvenile diabetes, pediatric AIDS, cerebral palsy, cystic fibrosis, muscular dystrophy and Down Syndrome combined. In New Jersey autism affects 1 in 49. 1 in 29 boys. It is now an EPIDEMIC. We do not know what causes autism. No cure is known.  

My oldest son Aidan is beautiful.  To look at him you would never know that he suffers from such a devastating disability called autism. Aidan has severe autism-he is completely non-verbal, does not sit still, is constantly running the house and requires 24 hour care. He is not an autistic savant. He does not have high functioning autism known as Aspergers. He does not have any words.  He cannot take care of himself. He cannot get himself something to eat or drink.  He does not know how to take a bath by himself or wash himself.  He does not know how to dress himself.  He is still wearing a diaper and does not know how to go to the bathroom by himself. I have been changing his diapers since he was born-10 years ago. 

Aidan also has severe sensory integration disorder which he was diagnosed with right before he turned three years old. This disorder is the inability of the brain to correctly organize and process information captured by the senses. Essentially, Aidan cannot feel where his body is in space.  This is why he is in constant motion and never sits still. In fact, Aidan’s body will only calm down at night after he has taken his prescription medication Risperidone which I call the miracle drug because it is the only thing that gets Aidan to sleep at night for at least 5- 6 hours a night. Aidan has never slept thru the night since he was born. Now whether he sleeps thru the night, even on his medication now, is a crap shoot. Sometimes we start our day at 1 am, 2 am, or 4 am if I am really lucky.

My Aidan has no words.  He is completely non-verbal. When he was 4 years old he was diagnosed with severe verbal apraxia of speech which means his brain cannot connect with the muscles in his mouth in order to produce speech.  He had words when he was 2 ½ years old -5 years old. He would say them when he was prompted. Words like car, hi, bye, Pop, Dora, owl.  I wish I would have recorded these times because I do not remember what his voice sounds like.   I have never heard my son call me “Mommy” or say “I Love You Mommy”.  I have been waiting ten years to hear Aidan say anything to me.  Aidan does make a lot of loud sounds and noises.  Sometimes on the verge of screaming are his noises-an ear piercing scream that goes right through you.

Aidan was diagnosed with epilepsy when he was 7 years old. He can have a seizure at any time. His last major seizure was over a year ago and was truly the most horrible thing I have ever witnessed in my life. I watched my son turn blue, his eyes roll back into his head and pass out on our living room floor completely unresponsive. I am happy to say he has not had another seizure like that since then. Approximately 30 % of all children with autism have some type of seizure disorder. Aidan can never be left alone. Someone has to be constantly watching him because he can have a seizure at any time.

In March of last year, Aidan was diagnosed with a severe immuno deficiency disease called DeGeorge Syndrome. His body does not produce enough antibodies to fight off infection in his body. This explains why he was always getting sick from when he was born. He had constant recurring ear infections from when he was a month old. He has had 3 sets of tubes put in his ears, his adenoids removed and his tonsils removed all by the time he was 2 years old. I was told that he has one of the most severest cases of DeGeorge Syndrome his neurologist has ever seen and compared him to the boy in the plastic bubble. His antibody level is at 200 when the normal antibody level is at 800. He has been going every 3 months to UMDNJ in Newark for  IV 6 hour antibody infusions with sedation at the hospital and I am happy to report that this is helping him, however, his antibody levels gradually fall again. He may have to go for these infusions for the rest of his life. He is on a constant antibiotic in between his infusions to help ward off any illnesses.

So why do I walk. I walk because my Aidan is truly a hero in my eyes.  He gets up every day and has to learn how to live in our world and adapt.  Autism makes this so hard for him every day, every hour, every minute.  I sometimes try to imagine what it is like to live in his world.  And I can’t.  And then I cry. It makes me so sad.  It is an overwhelming sadness that I don’t think will ever go away.  It permeates every part of my being. My Aidan inspires me every day to get up, fight the fight, and keep the faith. As soon as I see that huge smile on his face in the morning, it motivates me to keep going. It motivates me to make the most out of every day that we all have together.  I take one day at a time and always try to live in the moment. I have learned to enjoy each day as it comes and treasure the little things that Aidan is able to accomplish like greeting me with a big smile on his face and seeing the excitement in his eyes when I come home from work. And you know what it could always be worse.

It took me a long time to come to terms with my son’s condition. I had to look at the good things and not focus on the bad or I would be destroyed. I always try to focus on the positive with a smile on my face. I think most people would be surprised to know what goes on behind my infectious smile. My Aidan needs my support, my strength, and my perseverance. My son does not have a terminal disease. He is not physically handicapped. He is not confined to a wheelchair. He does not have cancer. And I am eternally grateful for that. I cannot imagine my life without Aidan. Nor do I ever want to. His hugs and kisses make my day-they make my life.

I have been walking for the past 8 years with my community of Hawthorne for Autism Speaks. I am proud to say that I became a member of the Northern New Jersey Autism Speaks Community Awareness Committee in 2010, and currently I am the Publicity Chair and am actively involved in promoting autism awareness and will not stop until autism is a household word in NJ.  

I am proud to say I am the captain of Team Hawthorne United and we were the top Walk Fundraising Team in Northern NJ for 2012 in that we raised over $25,000 for the walk. My team raised over $21,000.00 the year before and was the top community fundraising team for 2011.

We walk every year to help find better treatments and ultimately a cure for the millions of families affected by this devastating lifelong disability.

I walk so that someday my Aidan may be able to go out to dinner with his family and enjoy a meal at a restaurant.

I walk so that someday Aidan may be able to go to the grocery store with me and pick out his favorite snacks to buy.

I walk so that some day Aidan may be able to go to the mall with me and pick out his own clothes to buy.

I walk so that someday Aidan will be able to put his socks and shoes on by himself.

I walk so someday Aidan may be able to get himself something to eat or drink by himself.

I walk so that someday Aidan will be able to have some sort of relationship with his little brother Dailey who he has never played with or spoken to or even acknowledged in the past 10 years.

I walk for Luke, Anthony, Alec, Angel, Mattie, Mikey, Mark, Kyle, Brenden and Danny.

I walk for your 1 in 88. I walk for my 1 in 88.  

I walk so someday I can hear Aidan call me “Mommy” for the first time. I walk so someday I can hear Aidan tell me “Mommy I Love You.”

I walk because if I stand still it would destroy me.  I will continue to walk until I have no breath left in me.  I walk because I have hope and I will continue to have hope because without hope, we would have nothing. I walk with all of you because it is my belief that working together with Autism Speaks we will find the missing pieces of this puzzle together. Thank you.

Team Hawthorne United has a Blue Hair Extension Fundraiser for April-Autism Awareness Month coming up on Sunday March 24th at the Ambulance Corps Building-970 Goffle Road in Hawthorne, NJ 07506. The event will be held from 11 am to 4 pm and each blue hair extension is $10 which will be donated directly to Autism Speaks on behalf of our walk team-Team Hawthorne United. To donate directly to her team please find her team page here

Saturday, March 9, 2013

Both Sides Of The R-Word

Last wednesday was Spread The Word To End The Word day where we urged our community around us to stop using the r-word in a derogatory fashion because of its harmful effects on others. This is my 2nd year that I've done a PSA to help spread awareness for this campaign. I wanted to get involved with this effort because I've been on both ends of the word. When I was younger I used to be call the r-word repeatedly in our special ed classes and than when I got older I would joke around with my friends using the word. It wasn't until this campaign came around I really began to understand how harmful this word really was to people. 

I urge you all to go look at www.r-word.org for more information on this campaign. Special Olympics and Best Buddies partner here as hosts of this event and have been doing a fantastic job ever since 2009. Without further ado here are my PSA's!


My Story: Spread The Word To End The Word (2012)

Who Do You Call The R-Word? (2013)




Sunday, February 17, 2013

Guest Post: @AspergerSadie and Her Efforts to Support Autism

This guest post is from Erin Clemens (also known on Twitter as @AspergerSadie). Erin is an adult on the autism spectrum from New Jersey who started the website http://www.ihaveaspergers.webs.com/ to write about her experiences. 

My name is Erin Clemens.  For 15 long years, I was confused.  People were angry with me, and I could never figure out why.  They seemed nit-picky.  I tried SO hard to understand, but nobody knew that I was just DIFFERENT.

When I was in 10th grade I was diagnosed with Asperger's Syndrome.  While at the time it didn't mean much to me (I hadn't changed), I began to learn more and more about it.  Others started to understand me better.  Finally, my life was making sense, and people were listening to me.  That's when I knew I had to help educate others.  I didn't want others to go through the difficult times of being undiagnosed like I had.  

That same year I was diagnosed (2005), I also lost my purse.  Since my money was IN that purse, I had no way of buying a new one.  So I looked up online to see how to make one.  The first search result that I noticed was about duct tape.  Well, I had duct tape!  Grabbing the roll, I quickly got to work.  In about 2 hours, I had made my first item out of tape.  But I didn't stop there.  I created wallets and a tie for my Dad (who proudly wore it one time for a picture when I gave it to him on Father's Day.) and SO much more.  My favorite items, however, where the bracelets.  So colorful and easy and fun to make.  A few years later, I noticed how when I used different colors, they looked like puzzle pieces from the Autism Awareness ribbon.  I quickly grabbed the autism colors and put the first Autism Awareness Duct Tape Bracelet together.  

People noticed it.  They WANTED one.  But it didn't seem right to just make money off of autism.  So I decided to see how much money I could make and donate it to an autism cause.  They sold like wildfire.  The first year I made about $150.  I wanted to do it again the next year, in 2012.  By the end of the year, I had made enough money to buy an iPad AND a military grade case and screen protector for a class of students with autism.

This year, 2013, I hope to sell even more.  I've gotten a PO box and I will try selling them internationally.  I can only sell them by money order, but It keeps me on track anyways.  I've created a Facebook page (https://www.facebook.com/AutismAwarenessDuctTapeBracelets) for the bracelets as well.  My dream is to not just raise money, but autism awareness, acceptance, and understanding all at the same time.  These bracelets symbolize hope, dreams, and positive futures.  They symbolize to me the childhood of understanding and acceptance that I never had, and to me, that's priceless.
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