Honor Our Leaders of Tomorrow Who Are Supporting Autism

Created in 1995, The Prudential Spirit of Community Awards represents the United States’ largest youth recognition program based solely on volunteer service. Each year, the program’s judges select 102 State Honorees (two from each state and the District of Columbia) to receive $1,000, an engraved silver medallion, and an all-expense-paid trip to Washington, D.C. where the students will tour the capital’s landmarks, attend a gala awards ceremony, and visit congressional representatives on Capitol Hill.

  

The awards program’s State Honorees for 2012 include many remarkable students whose volunteer service was devoted to Autism. Those students include:

Rebecca Ackerman, 16, of Westborough, Mass., a junior at Westborough High School, leads a fundraising team that has generated more than $80,000 for autism research over the past six years, and works in a variety of other capacities to raise awareness of autism. “My twin brother has never spoken to me, or given me a hug,” said Rebecca. “Even when he stands right beside me, he’s in a different world. David has autism.” When she was 11, Rebecca realized that, even though one in every 110 children has this disorder, most people were not familiar with autism and not much money was being spent on research. “I was determined to change that reality,” she said.  Rebecca organized a team of friends and family members to participate in an annual fund-raising walk for Autism Speaks, a national organization, and to work on autism funding and awareness projects throughout the year. As captain of the “Doing It For Dave” team, she writes letters asking for donations, conducts bake sales and yard sales, operates lemonade stands and coordinates car washes. Rebecca, who also serves on the Boston Autism Speaks Committee, helps coordinate the organization’s annual city-wide walk, gives inspirational speeches, leads webinars and mentors new walk teams. In addition, she started a charitable organization, “Cake Cause,” that provides baked goods in exchange for donations. “I wish that my brother had his own voice,” said Rebecca. “Since he cannot talk, I will do my best to honor him using mine.”

Taytum Jones, 13, of Minot, N.D., an eighth-grader at Erik Ramstad Middle School, has been volunteering with students with disabilities since she was in third grade, both in school and beyond. After Taytum discovered that there was a special classroom for students with autism in her elementary school, “I kept thinking how cool it would be if I could go down into their room and interact with them, but I always said to myself, ‘No, I’m only in third grade!’” she said. Finally, she asked her teacher, and was given permission to miss an hour of class every other day to work in the autistic room. “I thought that was the greatest thing,” she said.  Soon Taytum was spending time with the students before and after school, and during recesses and lunch periods. She helped them with sensory activities, worked on physical coordination skills including stair-climbing and exercise ball balancing and assisted with homework. Taytum also volunteered with an organization called “Dream Catchers” that teaches children with disabilities to play baseball. She continues to work with disabled students at her middle school by playing games and assisting with learning activities. “I think I have made a great impact on children,” said Taytum, who wants to be a special education teacher when she grows up. “I can tell just by the smiles on their faces that they enjoy seeing me. Putting a smile on someone else’s face can bring me up even on the worst day.”

  

While in D.C., 10 of the State Honorees will be named National Honorees on May 7^th. These honorees will receive additional $5,000 awards, gold medallions, crystal trophies and $5,000 grants from The Prudential Foundation for nonprofit charitable organizations of their choice. This wonderful trip is designed not only to thank the students for all their hard work, but also to recognize their efforts and encourage others to follow in their footsteps.

On Monday, May 7th  you can watch the awards ceremony where the national honorees will be chosen HERE.

For more information on the Prudential Spirit of Community Awards visit their:   

• Website
• Facebook
• Twitter
• YouTube

A Wonderful Month of Autism Awareness & So Much More

It's been a while since I've linked up with the fabulous Mrs. 4444.  And it's been such a whirl wind of a month, that I figured the best way to piece it all together is through Friday Fragments.

It's been a long winter.  The month of March has been the roughest I've had in a while.  But April, has been pretty fantastic and full of exciting opportunities! And I'm hoping (crossing fingers and toes) that it's a sign of better things to come.

The first week of April, AutismWonderland was ranked #10 on Babble's Top Autism Spectrum Blogs for Parents 2012!  And they wrote such a beautiful description of my blog - here's a snippet "Autism Wonderland is as informative a chronicle of the ASD experience as Lewis Carroll’s book was about where Alice went." I am so honored to be included on this list. 

I spent part of Spring Break in Miami at Hispanicize - a Media/Blog Event.  Truly such a life/mind changing experience for me.  In addition to speaking on a panel with other special needs blog writers, I had the opportunity to pitch my blog on SOiTV.  I'm not used to public speaking and was extremely nervous.  Johnny, the gentleman introducing me, spoke so quickly in Spanish.  And um...I don't speak/understand Spanish - so I look like a deer in the headlights.  The blogger with the most YouTube hits gets to be featured on SOiTV for a month. 

Last month the wonderful Ellen Seidman of Love That Max asked me - ME! - to contribute something to...wait for it... 

My post, The Milestones That Keep You Going When You Have a Kid with Autism, was published on Monday, April 23 and I've been squealing ever since.

Last week, I attended a reading in support of my friend Keisha - a beautiful Caribbean poet/writer.  While mingling, I met Brendan Costello.  Brendan is a contributor for The Largest Minority Radio Show and asked me to be a guest.  Also on the air was Savannah Logsdon Breakstone - a young autistic woman and Savannah just gave me a whole new perspective.  Below is the link to download an MP3 of the show: http://archive.wbai.org/files/mp3/wbai_120425_210052wed9pm10pm.mp3

And then last night, I was invited to speak at New York Cares.  The room was filled with Team Leaders and volunteers all eager to learn more about autism. Also speaking was:

• Alicia, the Executive Director of GallopNYC.  A wonderful program that "provides therapeutic horseback riding to people in New York City, using interaction with horses to promote the growth of functional and mental abilities in a safe, supportive and fun manner."
• Elly, a program coordinator for a new program at Birch Family Services - the New Frontier. The New Frontier focuses on pre-vocational and social learning activities for higher functioning young adults with Autism Spectrum Disorder.
• Kevin, also with Birch Family Services, is the Autism/Residential coordinator with the Department of Curriculum and Instruction at Birch Family Services where he provides training, support and guidance to Birch residents and day habilitation programs.

Then this morning, I finally checked my personal email account.  After deleting all the SPAM, I opened up an email from the English Department of CCNY.  I won an award for a short story I submitted.  It reminded me that while I love writing this blog, I also love writing fiction.  It also reminded that even though I needed to take the semester off.  I need to get back and graduate.

I hope that all of these wonderful things are a sign that things are starting to look up.  I need a break.  And The Boy?  He needs a new school.  Cross your fingers that we find one and that the Board of Ed doesn't fight us too much.       

Play along! Don't know how?  

Check out Mrs. 4444

at Half Past Kissin Time 

for more Friday Fragments.

Words With: Christina Mendez ~ Model, Mom, Advocate

A few weeks ago I had the opportunity to talk with Christina Mendez.  If you follow the NYC hip hop fashion scene or are just a fashionista in general - you'll recognize her face.  I had seen her face before but it wasn't until I read her story on Latinas Inspire that I realized we shared a common bond.

We are both Latina (I'm Puerto Rican.  Christina is Dominican).  We both are native New Yorkers.  And, most importantly, we are both autism moms.  


You know in the first five minutes of talking to someone whether or not you click.  Within the first few minutes of talking to Christina, I knew we clicked. Especially when she said, "I'm hustling just like you." We both immediately understood each other.  We laughed like old girl friends.  Our "story" is similar is so many ways.  And we both want the same thing for our sons - acceptance, understanding and respect.     

*

When did you first realize there was something "wrong" with Damian?

I was young when I had Damian.  As a first time mom, I didn't realize.  I just thought that Damian was a late bloomer and that every child is different.

How did you/your family react to the diagnosis?

I was shocked.  At the time, Damian was enrolled in day care.  His teacher suggested we have Damian evaluated.  At 2 years old, Damian was diagnosed with severe autism.  Doctors and specialists told us Damian would never speak, read or write.  Damian was diagnosed in the mid 1990s, no one was really talking about autism the way they are now. 

The diagnosis was extremely difficult for Damian's dad.  He refused to believe it.  

As for my mother - she is in denial, even today.  She will never say that Damian is autistic. She says "he has problems."  But Damian is her baby, she spoils him.

What was your defining moment of acceptance?


Even though the diagnosis was a shock, I didn't go crazy over it.  I was at peace knowing and somehow I knew the diagnosis wasn't a death sentence.  


I remember during my senior year of high school - I was a bit of a wild child but in my last year - I had an internship working with autistic teenagers.  We were around the same age, but I was helping to take care of them and I just fell in love.  When Damian was diagnosed, I felt that God had prepared me for raising a child with autism.


How did you get involved with Autism Speaks?


I used to work for Verizon and was involved in the Hispanic Support Organization (Verizon employee group).  Every year we selected a charity to donate money.  The money we raised through the group, Verizon matched.  One year, we raised money for Autism Speaks and I developed a friendship with Jena Greco (Autism Speaks NYC Walk director).  


Do you think Latinos are as aware when it comes to Autism?


Not really.  I've been working with Autism Speaks for 6 years and there isn't an A-List Latino celebrity supporting the organization.  Autism isn't something Latinos openly talk about.  And I believe as a community, we need someone to say it's okay.  (Christina made reference to an article on SheKnows - Celebrities with Autistic Children)      

What has been the most rewarding aspect of being a special needs mom?  

Seeing how far Damian has come.  They said he would never speak.  He now speaks both English and Spanish.  It's not always age appropriate - he still talks about Elmo - but he can communicate his needs and wants.  We never knew the progression was going to happen and it has.  Damian has worked really hard to get where he is - he's taught me so much.  He has taught me to appreciate the little things.  

   

Check out Christina and Damian - 

 

Through the Looking Glass - Flannery Sullivan of The Connor Chronicles

I am so excited to have Flannery guest posting today!  She has got to be one of my favorite peeps out in the blogosphere.  I admire her sharp wit and wicked sense of humor.  Please be sure to check out her original post - the photos are a hilarious!  (I would have added myself, but I'm totally being a lazy a-- this week.)
 

Things I Learned When the Air Conditioning Went Out

originally posted on 6/20/11

This past weekend it was 102 degrees each day, which meant it was the perfect time for the air conditioning to go out.  And so it did.  On Saturday, it started making strange grinding noises and then went out during the late afternoon.


We called around, and couldn't get anyone out until Sunday morning.  Fine.  We toughed it out that night and had every ceiling fan and box fan in the house going at full speed.


On Sunday morning the AC guy gave the motor a "jump" and said he'd have to get a replacement motor on Monday.  By 11am it was off again, and could not be jumped back into life.  By 5pm, we decided we'd be getting a hotel room for the night since it was 96 degrees in the house.


I learned some very important things during the great air conditioning outage of 2011, and they are:

1.  It can and will get hotter inside the house than it is outside the house, despite having insulation and five fans.


2.  In terms of survival, it's better to live somewhere cold than somewhere hot when modern conveniences cease to function properly.  If it's cold, there are several options for survival, including starting a fire, layering clothing, generating body heat through exercise, huddling together for warmth, etc.  If it's hot, you're pretty much just fucked.

3.  Boob sweat is the most disgusting of all the sweat produced by the body.

4.  ADHD overrides Asperger's when it comes to staying in a hotel, especially if the last time you were in a hotel was when you were two-years-old and you don't remember it.  There was mad dashing around the house to pack, followed by jumping up and down and pleas of "can we just GO now?"


5.  There are lots of things to do in a room that is 14x10.  First, you can amuse yourself by jumping from one bed to the other, while pretending the floor is hot lava.  You can also turn on and off every light in the room 15 times, just because the light buttons are different than home.  There are also numerous doors, cabinets, and drawers to be opened and closed repetitively, as well as a window with curtains you can pull open and closed until your mother's face turns so red from annoyance that it appears it may pop right off her shoulders.


6.  It takes enormous restraint to not beat a child senseless who has just lifted his ass off the couch cushion in the lobby, and let a huge, disgusting fart rip...3 feet from the refined looking Asian lady also sitting in the lobby.




7.  Setting the thermostat for 62 degrees in your room will make you giddily happy, and will result in peaceful slumber.


8.  Hotels do not get the full array of cable channels, and at 8pm the only choices for a child are the local news station or How I Met Your Mother, neither of which seems to be interesting or appropriate for a six-year-old.


9.  A grown woman who has narrowly avoided heat stroke can lay on a hotel bed in her underwear, happily playing Pumpkins vs. Monsters, for a solid hour.
 10.  Packing an overnight bag when you are about to pass out from heat exhaustion means you will be wearing brown pants, a fuchsia tank, and a white shrug to work the next day.


11.  I won't pay more than $1.69 for a loaf of bread, but I'll pay almost anything to have a comfortable temperature.


The next time we move, in addition to considering the cost of living, unemployment rate, school ratings, housing prices, and crime rates, we will also be considering the average daytime temperature and whether we could survive outdoors in a tent for more than 20 minutes.


~~~~~~~~~~~~~~~~

I have a husband, a child on the spectrum, a full-time job, two dogs, three two fish, and a housemate.  And we relocated from California to Texas.  This blog might be the only thing keeping me on the ledge.

I am mom to Connor, our five-year-old son who has severe ADHD and mild Asperger’s.  He is our pride and joy, as well as our biggest challenge.  He was born in Southern California, as were my husband and I.  We relocated to Texas in 2007, and marvel at the differences every day.

I blog about whatever random amusement comes to mind.  Good luck making sense of it.

World Autism Awareness Day - You're Never Too Young To Spread Awareness

I've spent the last three months going back and forth to the Kennedy Center.  We're having The Boy reevaluated.  And the process, has sparked lots of old feelings. 

In May it will be 4 years since The Boy's diagnosis.  And I think back to the April before the diagnosis - when I was waiting for the results of all the evaluations.  When I was hoping for the best while preparing for the worst.  When almost everyone was telling I was worrying for nothing.  When The Husband was certain there was nothing 'wrong.'  I didn't even know April was Autism Awareness Month or that April 2nd, was World Autism Awareness Day. 

Had I known what autism was, I wouldn't have waited so long.  I would have gone with my gut feeling and had The Boy evaluated months before he turned two years old.

But that's neither here nor there.  I can't turn back the clock.  I don't care about what caused autism.  And have no desire to cure The Boy. 

What I do care about and what I can do - is spread awareness.  I believe Autism Awareness and Acceptance needs to start at an early age.  Children who are taught to understand and accept autism, will grow into adults who understand and accept.

Some groups consider autism to be an epidemic - I don't believe that's true.  The real epidemic is ignorance.  And ignorance can be easily cured with knowledge.  No special studies or research needed.      

I'd like to share something that was sent to me by my FB friend Jessica - a fellow warrior mom.  Jessica has three beautiful children.  Emilia, Charlie & Stella.  Charlie has autism.  And Emilia was asked to give a speech at her school - in front of 400 children.  When Jessica shared Emilia's speech with me on Saturday - I was so incredibly moved and I knew I had to share it here.

Autism Awareness is Monday, April 2nd. Autism is a mental disorder that many kids, including my brother have. They aren't gross, or weird, or contagious. They are just like us, but have a hard time learning or communicating. Many people say that autism is a puzzle. They say this because autism is hard to figure out. The color blue represents autism, like pink represents breast cancer. Did you know that the Empire State Building lights up blue in honor of Autism Awareness? Lots of people are working to find a cure for autism. As I said before, Monday is Autism Awareness day, and I would like everyone in the school to wear blue on Monday to represent autism awareness.

Always

Unique

Totally

Intelligent

Sometimes
Mysterious

Emilia's speech will impact the way her classmates think about autism.  Not even 10 years old, and she's making a difference.  I wish there were more Emilia's in the world. 

I've learned so much being The Boy's mother.  Our children can teach us so much, all we need to do is listen.    

Charlie & Emilia - Stella's in the background



Today is World Autism Awareness Day.  But it's also Autism Awareness MONTH.  So if you didn't wear your blue today - you have the rest of the month to show your support.          

My Name is _________ and I am #1in88

This post was inspired by Jess of Diary of a Mom.  She wrote the post - Not Just Numbers, PEOPLE.  (excellent post!) And asked readers to tweet the following - 

“@diaryofamom @autismspeaks Not just numbers, PEOPLE. This is the face of #1in88” with your photo.

This is the photo I tweeted.  And I tweaked my photo for this post.  


I read somewhere that the average person has about 130 Facebook friends.  The new CDC states that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).  (Click HERE for the full CDC report. I have mixed feelings about this.  But that's for another post.)   


Now I'm no math genius but if the statics are true, then you must know someone with autism.  And maybe if we're FB friends, then Norrin is the one that you know.      

April is Autism Awareness Month and I have so much that I want to share.  For now, I'll leave you with this picture of my son Norrin aka The Boy.  He is 6 years old.  He has autism.  He is autistic.  I don't care what caused it.  And I don't want him to be cured.  He doesn't suffer from autism.  And our life is not one to feel sorry for.  I am his mother.  And I love him.


I would love for you to link up a picture of your child here and share it with Jess too.

Here's what to do:

1. Upload a picture of your child picnik.com (site will close on 4/19/12) or quickmeme.com and use the following as your caption:  Hi.  My name is _______.  Not just numbers, PEOPLE. I am #1in88
2. Write a blog post including your child's photo and link back to this post.
3. Link up your post here - it will be up until 4/30/12. 
4.  TWEET “@diaryofamom @autismspeaks Not just numbers, PEOPLE. This is the face of #1in88” and link to your blog post (it must be the post, you're linking here).
5. Visit the blogger before (or as many as you'd like) and tell them how wonderful their child is.
6. Like the blogs that have linked up.  The ones with the most "likes" will win a special prize*.   (I'm still figuring that part out)  

* in order to be eligeble for the prize your post must follow all steps.
* I'm funding the prize part with my own money - more details to follow.  Due to shipping costs, will need to restrict it to US Residents only. 

"Unlocking Intelligence" One Voice at a Time

Over the last few years, I've read many stories of hope, love and dedication.   Stories about parents who have persevered and children defying the odds.  But last month, I was invited to a luncheon at the Ladies Home Journal office and heard an especially inspiring story.  A story about a mother, her nonverbal autistic son and a celebrity.

The luncheon was like a who's who of Special Needs writers.  And to be sitting at the same table with writers that have helped me through this journey, was truly an honor.  We were all invited to celebrate the March issue of Ladies Home Journal featuring Kate Winslet. In the article, Kate discusses her new book The Golden Hat: Talking Back To Autism  All proceeds from the book will go to The Golden Hat Foundation.



Me & Jean of http://www.mommytotwoboys.com/



Kate Winslet wasn't at the luncheon, but Margret Ericsdotter was.  Margret's husband, Fridrik Thor Fridriksson, filmed the documentary "A Mother's Courage: Talking Back to Autism." (trailer below - I dare you not to cry) The documentary features their non verbal autistic son, Keli, as well as "scientists in the field of autism and autism therapies and the parents of autistic children who share [Margret's] passion: to break down the wall between the children and the surrounding world."  Kate Winslet narrates the film. 

And it was Keli, who inspired Kate to start the The Golden Hat Foundation and write the book.


How Kate and Margret came to meet?  It's the kind of thing that happens in a movie; the kind of meeting that will change the lives of millions. And hearing Margret tell that story - I knew that their relationship went beyond Kate writing a check or lending her name; a beautiful friendship had developed.  The Golden Hat: Talking Back To Autism goes into detail of their meeting.  

My favorite part was when Margret talked about one of her first phone conversations with Kate.  Kate asked to speak to Keli.  Margret, caught off guard by the request, gently reminded Kate that Keli was nonverbal.  However, Kate remembered and she said, "I'll talk, he can listen."  (Hearing this, made me reach for my napkin to dry my eyes.)  

I won't say anything more about the book, I'd hate to spoil it.      


But I will tell you this.  The book is filled with celebrity self-portraits and quotes.  Kate asked her friends to put on her old Trilby hat, imagine them to think of all the individuals living with nonverbal autism and asked they share something that was important to them.  The quotes range from hilarious to poignant.

My favorite quote isn't necessarily from a celebrity.  It's from Don Shestack, a young nonverbal autistic man.  Don is nineteen and started communicating at nine years old.  When his mother  asked what he had "been doing all these years?" Don simply answered, "Listening."


That is what I imagine The Boy doing.  Even when he's not looking me in the eye.  Even when he doesn't answer.  Even when he can't answer.  Even when he's stuck in a stim.  I imagine him listening, absorbing the information and processing it in his own way, at his own pace.  (One day, I expect all those answers to come pouring out.)

We all know that saying - "Children should be seen and not heard."  So often, children/adults who are non verbal are considered "low functioning." Too often are they grossly underestimated and ignored.  The Golden Hat Foundation believes that non verbal autistics can be valuable members of society, if provided with the proper tools and support system. 

Once Keli started communicating at 10 years old, Margret realized that was intelligent and creative.  The name of the Foundation is based on a poem Keli wrote.   Keli's unique voice had been unlocked it the moment he picked up a  letter board.  And now, Margret and Kate are working to unlock others. 

We got to see a clip of the Margret and Kate interacting with some of the young men (including Keli) and women.  They communicated through a letter board, spelling out their words - pointing from letter to letter.  It was amazing to watch.  Even though they were nonverbal, even without much eye contact they were quick, witty and charming.       

What I respect most about The Golden Hat Foundation is that it doesn't support autism research.  It doesn't matter what causes or cures autism.  They care about improving the quality of life for nonverbal Autistic individuals.  Providing a secure living/work environment.   Creating a community where will people will always listen even if you cannot say a word.

Monday, April 2, 2012 is World Autism Awareness Day - Margret and Keli will make an appearance at the United Nations.  Margret will discuss the book and after she and Keli will be signing (Keli has difficulty writing but he will be stamping his name.) For event details click HERE.

The book will be released on March 27th but can be pre ordered by clicking  HERE. 

Surviving the Dentist: My post on Special-Ism

I'm excited to share that every 27th of the month, I will be posting on Special-Ism - a wonderful new website for special needs parents.  Special-Ism was created by Tiffani Lawton and Danette Schott.

If we're friends on Facebook you may know that I took The Boy to the Dentist earlier this month.  It went so much better than I anticipated.  But I was prepared.  


And since February is National Children's Dental Health Month - I wanted my first post on Special-Ism to be about our first trip to the dentist.  You can read it HERE.


And a BIG thanks to Alissa Moseson of Sprinkles of Hope for helping me write my social story.  I will upload a printable later this week of our dentist social story.  


And to my fabulous FB friends: Melanie, Teresa, Homestyle Mama, Blessed by Autism, Rosyniah, Jennifer, Kellie, Our Special Families Village, Jen, Kerenna, Beth Allison, Elsa, Jen C, Tiffany and Christine - Thank you for sharing your thoughts, suggestions and support!


If you are in The Bronx/Yonkers and looking for a special needs pediatric dentist, I highly recommend Dr. Ivis Getz.  For more information, please visit Caring Pediatric Dentistry     
    

The Unknown Mami

If you're a blogger, blog writer or blog reader - you have a blog you stalk.  At least I do.  (You know you do too.)  For me, there is one blog writer that I always make time to read and comment.  (And these days - it's tough to keep up.)  

Her name, you ask? She is known as The Unknown Mami.  

Whether the Unknown Mami is writing about motherhood, marriage, milk or the mundane she's always exciting to read.  Over the last few months, the Unknown Mami has made me laugh and cry.  She has inspired me to do stuff like this and this.  Her girls, Put Pie and Luna Pie amaze me.  Unknown Mami's husband - Unknown Papi, he's pretty cool too.  And even when the Unknown Mami is Aiming Low, she's soaring high. 


It's been a pleasure getting to "know" her through her writing and I hope one day our paths will cross. 


And if you haven't discovered the Unknown Mami for yourself, well then...here she is  ~    

Intro in your own words:

Hi, I'm Unknown Mami; otherwise known as The Most Interesting Woman in the World. My cleavage alone has experienced more than a lesser woman’s entire body. My sweat smells like gardenias. I may or may not be prone to exaggeration.

What inpired you to start your blog?

In 2008 at the age of 37, I became a mother. Before that my life had always involved acting in some way or another. All of a sudden I wasn't going out on auditions, or rehearsing for plays. I felt isolated and without a sense of community. I was used to creating on a regular basis and then all of a sudden... nothing. I woke up one day (April 17, 2009 to be exact), my first daughter was 7 months old, and decided to start a blog. I put a paper bag over a picture of myself and Unknown Mami was born.

Dunkin Donuts or Starbucks?  Neither. I live in San Francisco where coffee is abundant and the need to frequent a "chain" is almost non-existent. If I have to choose a chain, then it would be Peet's Coffee.

Describe your ideal day?  I would get to sleep as long as I needed to. That's it. Sleep, that's what I long for.

You're stranded on an unknown island with Unknown Papi, Put Pie and Luna Pie - what 3 items would you want to make your lives easier?  And why.

A lighter for fire, pocket knife for all kinds of things, and a laptop with internet access so that I could blog about the experience and look up tutorials on how to survive on an island.

Where do you see the Unknown Mami in 10 years?

You know what? I'm open to the possibilities. I don't know where Unknown Mami will be in 10 years and I don't want to know. I'm happy just seeing it all unfold.

Sh*t Autism Moms Might Say...(Special Saturday)

By now, you've had to have seen all of those "Sh*t _____ ____ say" videos.  If you haven't.  Where the hell have you been? 

I find some of them really freaking hilarious.  I could watch them over and over again.  Anyway...I've been thinking about every which way to make one.  But I wouldn't even know where to start.   So last week I saw this post at Love That Max and was thinking of writing my own.  And then I stopped by Aspie in the Family and read THIS post.  I knew, I had to write my own.  

So - here is my list of some of the Sh*t Autism Moms Might Say (or at the very least some of the Sh*t I Say regarding our life with autism) to their kid, their partner and anyone else:

Don't put that in your mouth!

Of course I'll read __________ again.  (It changes from week to week.)

GOOD JOB!

Aren't you sleepy?

Say 'hello'. 

Where are your pants?!

OMG - did you see what he just did?!

Did he poop?

He was up from 1 to 4 in the morning!

Did they write anything in the notebook?

I haven't slept.

He did it for the first time today!

He requires...

He hasn't really slept.  

It's appropriate.

No, no - I'll work around your schedule.

Autism isn't a disease. 

Uh, no...He's not like Rain Man. 

And now....one of my favorite "Sh*t _____ ____ Say" videos that's PC enough for hopefully everyone to enjoy!

 

 

~~~~~~~~~~~

Special Saturday is a blog organization to raise awareness of children with special needs.  This week’s theme is on the things we say as special needs parents.

     

A Life Worth Living. A Life Worth Saving.

Just when I think I've seen, heard and read it all, I come across something that makes me say "Are you kidding me?"  Except somewhere between "you" and "kidding" is the big F-Bomb. 

On January 10, 2012 Chrissy Rivera walked into the Children's Hospital of Philadelphia.  And she heard something that no mother should have to hear. Chrissy's 3 year old daughter, Amelia Rivera, needs a kidney transplant.  However Amelia's doctor  states: 

"[Amelia]—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays..."

How can a doctor determine a child's "quality of life" based on their cognitive disability?

There are several tests where The Boy falls in the Intellectual Disability range (formerly  mental retardation) range.  And my sister, falls under the same disability.  Well, chances are if you are reading this, you've read about The Boy before. (In case you haven't, read this first) But my sister - is in her 20s.  She works part time at a furniture store and goes to the gym 5 days a week.  She's a fantastic artist and has quite the sassy personality.   And I'll be damned if anyone questions their quality of life.

I can't even imagine what this family must be going through.  But I know how this story makes me feel.  I feel angry.  And disgusted.  But mostly disappointed. 

Because this doctor.  This idea of what determines quality of life simply because someone has a cognitive disability.  Is WRONG.

If you are just as angry as I am.  If you believe that Amelia deserves to be treated equally.  If you believe that every child deserves a chance then sign this petition.

Support Amelia (Mia) and Her Family on Facebook.

And then go to this page and let the Children's Hospital of Philadelphia know what you think of that Doctor's statement.        

   
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I cannot stop thinking about this story and wanted to read their journey from the beginning.  For more on The Rivera's - check out a few of theses posts: 

About Chrissy & Joe Rivera
"Fix You"
How She Does It...

Words With: Jillsmo of Yeah Good Times

 

Name/Blogging Name: Jillsmo

Blog: yeahgoodtimes.blogspot.com

# of children/diagnosis: 2 children: Child 1: Autism; Child 2: Uber NT

Intro in her own words: Jillsmo lives in Berkeley, CA with her 2 children, 1 husband and 4 cats. She writes about autism, family, cats and whatever else happens to go through her head at any particular moment. She always draws REALLY bad stick figures.

AW: What was your first reaction to your child’s diagnosis?

J: Denial. The Developmental Pediatrician who gave us the diagnosis had, 6 months earlier, diagnosed him with Global Developmental Delay and had told me, specifically, “He’s making good eye contact so he isn’t anywhere on the spectrum,” and then when we went back for our follow up, she changed the diagnosis to PDD-NOS. She explained it as being “on the autism spectrum, but not autism.” That was the mantra I kept repeating in my head, and to others, for the next 9 months. “He’s on the autism spectrum but he doesn’t have autism.”

AW: What was your defining moment of acceptance?

J: I got pregnant with Child 2 about a month after Child 1’s PDD-NOS diagnosis and remained in denial for the duration of my pregnancy. Shortly after Child 1 turned 3, it was around March of 2005, he started scripting. “I think I can, I think I can, I think I can.” I thought it was adorable. But then he moved on to script other things, and after a few months was scripting constantly, but never said anything else. Ever. It was a relentless stream of Elmo and Zoe’s lemonade stand. I was forced to start researching this “repeating things he’d previously heard” thing that he was doing during every waking moment, and as much as I tried to ignore how many websites told me this was a symptom of autism, it became rather obvious. The physical act of having a baby, in July 2005, was an enormous cathartic experience that snapped me out of my denial almost immediately. I spent Child 2’s first few weeks not marveling over my new baby, but mourning my other one.

AW: What inspired you to start your blog? 

J: Allie Brosh inspired me to start my blog; it had nothing to do with autism. I used to hate blogs; I thought they were only about liberal or conservative blowhards spouting off on whatever their opinion on politics was, and I have no interest in hearing what other people think. But then I discovered Hyperbole and a Half and realized that blogs can be anything you want them to be; they aren’t just about politics. I spent about a week reading everything she had ever written, and I thought “I can do this.” Well, not the artwork part, but I can be funny and I can write that down and hit the publish button, too. So the blog was created with absolutely no purpose except for me to rant about whatever was in my head and maybe make some of my online friends laugh. Since autism is such a big part of my life it was natural that I would spend a lot of time talking about it.

AW: What has been the most rewarding aspect of being a special needs parent/writer/advocate?

J: That’s actually two different questions for me, so I will split them up:

a.     I spend a lot of my time offline talking to parents in my school district about their children’s education and I help them figure out how to navigate the school district in order to get the best services their can for their kids; I would be doing this regardless of the blog, though. It is definitely hugely rewarding to be able to help somebody learn what their rights are so that their kids can the best education they can.

b.     As far as my blog goes, the most rewarding aspect has been meeting adult autistic who can help me try to figure out what goes on in this beautiful head of my Child 1. They have been where he is and can not only help me understand what he’s thinking now but they give me a window into his possible future. They make me feel hopeful for him; after all, they went through all of this without the services and support he’s getting now, imagine how much healthier and happier he will be as a result of all the work we do?

AW: What advice would you offer parents of recently diagnosed children?

J: SUPPORT IS CRUCIAL!! You cannot do this alone. Even if your family and friends are wonderful, and unfortunately they so rarely are, you’re going to need a bunch of friends who can relate to what you’re going through; who you can vent to when things get hard. Don’t try to be a hero and do this alone, because you simply can’t. You may not be able to find a support group that you can meet in person (but who has time for that, anyway?) but you can find something online. If you need help finding a community, email me! I’ll help you!!

AW: Feelings on diagnosis in 6 words or less:

J: Not a death sentence.