Thank You Tyler Gildin {Comedian Apologies for using "Autistic" as a Joke}

This morning, I quickly scrolled through my FB feed and saw a link to The Most Awkward Dance Moments of The 2014 Grammy Awards. I didn't watch the Grammy's so I was interested in seeing some of the write ups. And Tyler Gildin's article was pretty hilarious. 

Then I saw the caption: Autistic Bear Bounce. And I stopped laughing. 

Because the singer's (I'm old and have no idea who the woman is) dance movements looked like The Boy's stim - eyes half closed, arms moving up and down stiffly. And it pained me. The Boy cannot help his stim. He does it when he's excited or frustrated or scared. 

And lately, The Boy's been interested in dancing. He's always talking about having a "dance party." His dancing, is usually just jumping up and down or moving stiffly from side to side. Dancing doesn't come naturally to him. It's only in the last year that he's acquired the motor planning to dress himself. 

I took the joke of "Autistic Bear Bounce"personally. I couldn't just let it go. So I left a comment. And then I sent Tyler Gildin a tweet.

And you know what happened? He not only changed the caption but he apologized. 

@LaliQuin @EliteDaily apologize. We changed it immediately. Did not mean to offend. Truthfully sorry.
— Tyler Gildin (@TylerGildin) January 27, 2014

Tyler Gildin could have been a jerk (ahem, DL Hughley). Gildin could have easily turned against me on Twitter and made me a target of his ridicule. And he didn't have to change his article. But he did. And I appreciate it. 

Someone replied to my comment, saying I should "chill out." But I just can't chill when it comes to autism or any other special need being the punchline to a joke. It's not okay to make fun of autism. Ever. I have written about use of the 'r-word' and I worry that autism will soon replace it as a derogatory term. I don't want to be the word police. But people must be held accountable. People need to understand why their words matter. I hope Gildin understands the power and impact of his words. And I hope that he'll think before using autism as the punchline.   

When I think of how hard The Boy has worked to do all the things that come so easily for other kids like point his finger, wave, jump or speak. I am so proud and I cherish every one of those milestones (they are often the things that keep me going). It’s incredibly painful when people use autism as a term of ridicule. 

The Boy is growing up. One day, he may like a girl or want to play basketball with the neighborhood kids or apply for a job. I don't want to think about him being left out or made fun of because he's different. All I want is for him to be given a chance and to be understood.

I'm just one mom. I can't change the world. But today, I changed one person's mind.  And it's a small victory.  

Max Loses His Only Friend | #Parenthood (Season 5, Episode 12) "Stay a Little Longer"

Parenthood: Season 5, Episode 12

Stay a Little Longer (Jan 9, 2014)

I've been watching Parenthood since it started. I don't know why I've never written about it before. I love the show. (It also sort of annoys me…but I don't want to get into that now.) The show tackles subjects that really hit close to home for me. Last night's episode - rather Max' story line - really moved me.

Recap:

Adam's confused when Micah ignores Max at school. Micah is still Max's best friend, right? Max says they aren't friends anymore, but refuses to elaborate. Kristina wants to call Micah's parents, but Adam is determined to solve the issue directly with Max. After much probing, Max tells Adam that Micah's obsessed with basketball, which is stupid since he's in a wheelchair and can't play. Wheelchair basketball isn't basketball. Maybe that's what offended Micah... Per Adam's suggestion, Max apologizes to Micah and invites him to a Golden State Warriors game complete with hot dogs and nachos. Too busy with his new friends, Micah says no. Adam's heart breaks; Max has lost his only friend. Kristina and Adam rally, revving Max up for an awesome basketball game with his parents.

What I love about Adam and Christina (Max' parents) is how differently they feel when it comes to Max. It's honest and relatable. Over the years, I've seen them grow as a couple and evolve as special needs parents. And yet there is still so much they have yet to learn. I think they believed that because Max and Michah both have disabilities (for lack of a better word) - it would be the ideal friendship. However, Micah's rejection of Max reveals that having a disability doesn't automatically mean you can tolerate or understand someone else's.  

Adam tells Christina, "Max has lost his only friend at school and kids at school are starting to notice his differences and he's all alone." 

It's an experience I can see our family having. Maybe that's why last night's episode hurt my heart so much.

The Boy doesn't go to school with typical kids but he is getting older. The Boy will turn eight years old in two weeks. And the older he gets the more obvious his differences become. The Boy does not have the same interests as a 'typical' 8 year old boy. There are times when I wonder if The Boy experiences loneliness. Even if he doesn't, whenever we're at the playground and The Boy is playing alone - I feel it for him.

Breaking up with a friend is painful. When I walked away from a 20 year friendship it was a difficult decision but I knew it had to be done. And while I missed my friend, I took comfort in the fact that I had other valuable friendships. I could not imagine losing my one and only friend.     

I know Max is only a character in a television show, but that rejection is real. It's something so many kids with autism face. And it's damaging. I never want The Boy to go through that. If I could shield him from those experiences forever, I would. But I can't. 

The Boy doesn't need to be the most popular kid at school. All I want is for The Boy to have one kid, at least one person who gets him.  

While Max has lost his only friend at school, I'm grateful that he has Hank. Because Hank is someone who gets Max.

And I hope there's someone like Hank in The Boy's life.

And if you have no idea what I'm talking about...check out this clip from last week's Parenthood episode, "Promises." (I was a hot sloppy sobbing mess watching this.)

This is Autism

I don’t understand autism,” a friend said while we were eating dinner. We’ve know each other since grade school and hadn’t seen each other in a while. We were catching up and asking about our families. Though we are close enough to ask each other almost anything, I could tell she was uncomfortable admitting she didn’t know much about autism. I couldn’t blame her. I didn’t understand autism either, until I had to.

Autism isn’t something that can be easily summed up in a sentence. Or a blog post for that matter. And I was at a loss at how to explain it to her so that she could understand. I told her about Norrin and the progress he’s made. We talked a little about the future. And then like long time friends who hadn’t seen each other for a while, we immediately moved on to another subject.

But I’ve been thinking about our conversation since. I thought about the This is Autism Flash Blog in response to Suzanne Wright’s Call For Action. Wright believes that parents raising kids with autism are “not living,” they merely exist. And that we live in despair.

Read my post on Parents.com/To The Max - This is My Son. This is Autism - HERE.

How Autism Impacts Minorities

Dr. Sanjay Gupta and Everyday Health explores how Minorities are disproportionally impacted by the rising autism rates. With less access, it could drive up healthcare costs for all in the long run.

Oh...and I'm also in the video.

You can read the article - Autism Strikes Some Families Harder Than Others - on Everyday Health.

Just to clarify some things in the video:

* Norrin was still getting home base (and center base) services from a SEIT (Special Education Itinerant Teacher) between 3 and 5 years old through CPSE (Center of Preschool Special Education). Unlike like our Early Intervention experience where we got really lucky with an amazing therapist, we went through 6 SEITS in 2 years before hitting the jackpot with a really great person. One SEIT quit after 3 days because of parking (she was used to visiting homes, where she could park in a driveway) and another SEIT told me, "my husband has concerns about me coming to this neighborhood." One agency dropped me after I expressed concerns/complaints about a SEIT.       

* Norrin was placed inappropriately during his kindergarten year. That was the year I had to sue the Department of Education because the school failed to provide an Occupational Therapist. After 8 weeks of paying out of pocket (totaling $1250.00), I was given a waiver letter to continue outside OT services and no longer required to pay out of pocket. The OT was able to bill the Department of Education. I sued the DOE for full reimbursement for the money I spent on OT and later that year, I had to sue again to have Norrin removed from the school. 

* For the last 2 years we've been paying out of pocket for ABA therapy at home (after school) from an agency called Center for Autism and Related Disorders. We use our medical insurance to pay for this therapy. I am very lucky to have a job with really good health insurance coverage (we have an autism advocate that helps file medical paperwork) and thanks to the Affordable Care Act, I live in a state with autism coverage.    

* Over the last five years, I've read many books that were helpful and inspiring. However, they are predominantly written by white, upper middle class women who were able to either move, hire an attorney and/or quit their careers to stay home with their children. These were not options for me. And reading these books in the beginning, I felt as if Norrin would never be able to "get better" since I could do any of the things I was reading about. I now know better.   

#Missing Child with #Autism in #NYC: Avonte Oquendo

UPDATE: The family's Go Fund Me page has been deactivated as of 10/10/13 9pm est. 


Early Monday morning I received an email from a young man named Wes, asking for help. 

My best friend's little brother (I consider him my brother as well) - AVONTE OQUENDO - has gone missing Friday (10/4) early afternoon from his school in Queens, NY. Avonte is 14 years old and is autistic, he cannot speak or write. I have attached his picture and a picture of the NYPD missing persons flyer for him. If there is anything you could do to distribute this information to aid in finding Avonte, I would be eternally grateful. 

Avonte is a 14-year-old, black male. He was last seen at 12:38 p.m. on Friday, October 4, leaving his school on 51 Ave in Long Island City. Avonte was wearing a grey striped shirt, black jeans, and black sneakers. He is 5’3″, weighs 125 lbs. He has autism and is non-verbal. 

I shared the information on my Facebook pages and tweeted but it just wasn't enough. Whenever a child with autism goes missing, I feel it because it could so easily be my own child. 

When you have a child with special needs, parents have to rely on bus drivers, matrons, teachers, paras and therapists to keep them safe. Avonte walked out of his Long Island City school in the middle of the afternoon. How could Avonte walk out of the building completely unnoticed? It was mentioned that Avonte had a para because he as to be supervised at all times.   

But before I get angry and demand answers. I want Avonte found safe and I want him found soon. We can ask the DOE questions later.

Click on the link (or photo) for more up to date information regarding Avonte and the search effort: http://www.gofundme.com/4o939c [acct has been deactiviated as of 10/10 9pm est]

Drake is the "Most Influential Rapper" in Social Media. Too Bad He Uses His Influence To Insult Individuals with Autism.

I grew up listening to hip-hop. My husband and I still listen to it. We listen to it at home and in the car with our seven-year old son, Norrin.  Living in The Bronx, hip-hop and rap music is part of our culture. The Bronx is the borough where hip-hop and rap was born (sorry Brooklyn…you know it’s true). And as a writer, I am often fascinated by the lyrics, the intricacies of the rhyme and word play.

But when I read about Drake’s new song (featuring J. Cole) “Jodeci (Freestyle)” I was so disappointed. The lyrics are lame, hurtful and unworthy of respect. And definitely not the kind of music I want my son to hear.

To read the rest of the article check out my post on Babble.com: 

"Most Influential Rapper in Social Media Insults Autism Community" 

On July 21st - J.Cole wrote an apology and the song has been removed. You can read the apology HERE

Racial Profiling and Autism: How Do We Keep Our Kids Safe From the George Zimmerman's of the World?

Last night as I listened to the Jury declare George Zimmerman not guilty of 2nd degree murder and manslaughter of young Trayvon Martin - I was heartbroken. As a parent, my heart ached for Tracy Martin and Sybrina Fulton. No parent should ever have to lose their child to such senseless violence.

I sat on my sofa with tears streaming down my face - shocked that a young black man's life was of such little value in the state of Florida. Disgusted by the Stand Your Ground law and how one could hide behind it.

We live in a country where citizens in most states have the right to bare arms, to stand their ground in the name of self-defense. We live in a country where Americans have easier access to guns than mental health.

And we live in New York City where Stop and Frisk is practiced.  

In May of 2012, I wrote why I fear for young men of color with autism living in urban communities. Zimmerman's not guilty verdict does absolutely nothing to quell my fear, it simply exacerbates it.

When The Boy was in kindergarten, his teachers made him walk down the halls with both hands in his pockets to keep him from flapping his hands. For years I've gone back and forth on whether or not The Boy should be free to flap. I've gotten to the point where I don't care if he flaps. I never asked him to have 'quiet hands.' Now I worry that his hand flapping will be the thing that makes him look suspicious. If he's walking down the street with his hands balled in his pockets or fidgeting with something - will it look like he's armed? Will his jerky awkward movements or high-pitched scripted speech deem him dangerous?

I don't know how the laws will change or how autism awareness will increase. I don't know what The Boy will look like or be like in ten years. I don't know if he will be able to walk down the street alone. I want him to be independent. But if he is, I will fear for his safety. I fear how he will be perceived.  I fear for any young man with autism...especially those living in a state like Florida.

Children with autism have such a hard time picking up on social cues. They have difficulty understanding body language. How do I teach a kid like mine to be street smart? To be cautious and careful. Who will look after him, when I am gone?  

A few weeks ago, I was talking to someone about The Boy and I mentioned he had autism. Immediately that person brought up Sandy Hook. "Didn't the killer have autism?" she asked. I couldn't even believe that the Sandy Hook tragedy was the connection this person made to autism. I was telling her about my seven-year old son and she associated him with a mass murderer. It was unsettling. It worries me. 

This is why I write. This is why more men and women of color raising children with autism need to come out. This is why autism awareness is critical. People need to understand what autism looks like - not only in children but in young adults. Police and first responders need to be trained to understand and recognize an individual with special needs.

Trayon Martin did not have autism. He was just a boy, walking down the street and targeted as a threat.

But there are many young men of color with autism, who walk down the streets in their neighborhoods. Will they be seen as a threat too? Will someone feel justified to gun them down in the street in the name of standing their ground? 

Eventually our young sons will grow into men. How can we keep them safe ?               

Autism Education Week at The College of New Rochelle

If you know of someone in education, not just special education, or who deals in issues of disability, family advocacy and school administation, parenting or patient care, then one or all of these events may be of interest.

Wed 4/24

A panel on Autism Education at 6:30pm.

Thu 4/25

Ram Kairam, MD on Autism Classification and Diagnosis at 7pm. These evening events are on our main campus in Romita Auditorium.

Fri 4/26

All-day teacher education symposium on Autism.  You can register online  on the cnr.edu website. 

For more information http://www.cnr.edu/NewsItem/965 

Autism Awareness TOMS by Pear Mama for AutismWonderland

I was going to post this tomorrow but I honestly can't wait! When I picked them up from the post office this morning, I walked out, ripped open the box and changed my shoes in the street. (Oh yes, I did.)

Who painted these beautiful TOMS? 
PEAR MAMA of http://pearmama.blogspot.com 

Between us, I have a bit of a girl crush on this super artsy, super craftsy, super fabulous Latina Cali blogger. I love love love her blog, her voice, her DIY designs that I know I'll never make - because I am not craftsy. At all. 

And when I saw she makes custom-painted TOMS, I knew I needed a pair for Autism Awareness Month. So if you're interested in a pair - Denise aka Pear Mama is the go-to gal! 
For more info on her custom-painted shoes click HERE.     

Disclaimer: I happily paid the going rate for these shoes. All gushing is genuine, all opinions are my own.   

April is Autism Awareness Month

12 posts to raise Autism Awareness:

• Autistic Kids are Amazing 
• Autism in the Middle
• The Milestones and Moments to Celebrate When You Have a Kid with Autism
• 10 Questions you shouldn't be scared to ask about Autism
• 10 Common Autism Terms You Should Know
• I'm Not Waiting for my Son to Grow out of Autism
• What To Say to an Autism Parent
• "He Doesn't Look Autistic" and Other Misconceptions
• How to be Friends with an Autism Parent
• 5 Things You Don't Know About an Autism Parent
• No Need to be Sorry and Other Things You Shouldn't Say to an Autism Parent
• My Son has Autism. No need to say I’m sorry.

Autism Through the Years

The year I was born, the number of children diagnosed with autism was 1 in 5000. And I went through my school-age years and then some never knowing what autism was or anyone who had it. As I grew older, I had an idea it existed but it wasn’t anything I knew about.

It wasn’t until 2008, at the age of 33,  that I really learned what autism was.

Read the rest on Babble: 1 in 50 School-Age Kids Have an Autism Diagnosis. What does it really mean?

***

Catch up on some of my other Babble posts:

• My Son has autism. No need to say I’m sorry.
• Autistic Kids are Amazing 
• Autism in the Middle
• The Milestones and Moments to Celebrate When You Have a Kid with Autism

This is NOT Autism Awareness. Using a child's photo without a mother's permission is wrong.

*Update 3/22/13: Last night, the Facebook page removed the uploaded photo of my son and shared it from my Facebook page. And they apologized. I accept their apology and I am grateful that they did the right thing. Though it's upsetting by what it took to get it. 

And over the last several hours - I've read comments that have really hurt. 

Someone posted that I am the cause of my son's autism because I did drugs. Well, I don't do drugs and um autism isn't caused by drugs. There is no known cause for autism.

Someone posted that I wanted the picture removed because I was scared of immigration. Which was not only insulting but amusing because I was born in New York City. But even if I were born in Puerto Rico - I'd still be an U.S. citizen.

Someone posted that I shouldn't care about being credited and it didn't matter that I didn't give consent, I should just be grateful my son's picture is being shared to raise awareness. 

I've been called petty and argumentative, accused of exploiting my kid and not concerned with raising autism awareness.

I've been told that if it's on Facebook, it's 'fair game' and that if I didn't want anyone sharing my photo then I shouldn't have put it on the internet in the first place.

I have questioned whether or not I have the right to blog about my son. And after this experience, I don't know if I can ever use my son's photo again. 

At the end of the day - a photo of my child was intentionally downloaded and then uploaded to a Facebook business page, Autism Awareness, without my consent and it was captioned, Share to increase Autism Awareness. Even though they failed to share my photo. This page is a for-profit business page however it's buried under links and links of several charity pages. This Facebook page attempted to use a photo of my son for their own financial gain and to drive traffic to their sites. 

I'm a working mom, college student and writer who maintains this blog for free.  I don't have a staff, I'm a one woman operation. 

And I fought back. 

Thank you so much to everyone who helped me! So grateful for your support and encouragement. 

original 3/21/13 post below 

-----------------------------------------------------

This afternoon, I logged onto Facebook and saw something the really upset me. (I'm refraining from using the kind of language I really want to use.) 

THIS Facebook page used the above picture of MY SON without my permission and without linking to my own Facebook page. 

And they had the nerve - the nerve! - to caption it: Share to increase Autism Awareness! 

The irony: They didn't share it from my facebook page. They didn't share it from the Parents Magazine Facebook page either. THIS sorry Facebook page uploaded the photo as if it were their own.

What's the big deal? 

Well. The page that stole my photo is a business. 

And on this page...MY photo has been shared more than 12, 000 times. It has more than 35, 000 likes. 

The page itself has over 786 thousand likes. Mine doesn't even have 2, 000. 

This Facebook page is a nameless, faceless business page looking to make money selling t-shirts and bracelets for Autism Awareness.  

But in the process - they stole my a photo of my son and my words without my permission. And they are the ones who will profit. Not me. And not my son.

I don't get paid for writing this blog. This blog has been a labor of love. We're a working class family, struggling to make ends meet. I'm also a student. And while I may get paid to write for Parents.com and Babble.com - I'm not ready to quit my day job. I'm not making Dooce dinero.    

I sent them two private messages. NOTHING.

I posted on their wall. NOTHING.

I tweeted them. NOTHING.

Well I reported them to Facebook for copyright infringement.

Would love your support until they take my photo down or at least tag my AutismWonderland Facebook page.

Let them know it's not okay to steal photos without permission - click HERE.

Let them know the photo belongs to Lisa of AutismWonderland - click HERE.
[crossed out - no longer necessary since, they've removed uploaded photo & shared properly]

I wish I could say this is the first time I've seen a big business Facebook page steal an autism mom's photo but it's not. And it's never okay. 

These are our words. These are our kids. Do not let a business trying to make buck take advantage of the small mom blogger who is trying to raise awareness.  

Autism Awareness (jewelry) Collection by Magic Dog Studio

Back in November, my mom blogger pal, Jennifer Bunt, who writes Fasten Her Seatbelt shared her jewelry  collection and the inspiration behind it with me. She asked me to feature it for Small Business Saturday and I happily agreed. Except, I was in my last weeks of school and my professor was driving me loca with all the last minute assignments. (And okay, fine, I was a bit of a procrastinator and was scrambling around reading and writing papers.) But I'm sharing it now because Jennifer's collection really is beautiful and I think her jewelry makes for a great gift. (HINT: Valentine's Day and Mother's Day is coming up.)

Please read the inspiration behind Jennifer's Autism Awareness jewelry collection.   

*   

The creation of the AutismAwareness Collection was inspired 
by my personal connection with Autism Spectrum Disorders,
 as well as my belief in giving back to the community. 

When our daughter was four years old, my husband 
and I were told Emma was on the Autism Spectrum - 
PDD-NOS to be exact. Since her diagnosis, we have worked 
hard to ensure Em could be the best that she can be. 
Em has an amazing team of people working with her and 
for her - each day I am amazed at the person she is: 
compassionate, artistic and incredibly intuitive. 



Many of my designs are inspired from Emma... 
my feelings, my hopes, my dreams for her. 

Each piece has been handcrafted in studio, from 100% 
recycled sterling silver - it's the ethical thing to do! - 
and features unique pieces designed to 'start a conversation'.



Although there is something for everyone in the Collection; 
The unisex 'Puzzle Disc' bracelet ($45), the 'Hammered Puzzle' pin 
($35) and more, the 'Build Your Own Awareness' Necklace 
has been very popular, as charms can be added over time. 
Charms start at $45 and range to $95. 

Each charm is unique 
and conveys a message using a combination of symbols, and 
initial charms can be added starting at $10. 



$10.00 from the purchase of each item from the Autism Awareness 
Collection will be donated to a participating non-profit of your choice. 
($5.00 on items costing less than $50.00)

Disclaimer: This is not a product review. I have not been compensated in any way by sharing this information.