Media Malpractice and Autism

Sandy Hook Elementary School saw the most unspeakable evil and tragedy at the hands of a madman on Friday, and my thoughts and prayers go out to all effected by it.

As I heard the news on Friday I ran to get my kids from school, I just couldn't NOT pick them up, I had to be with them. I was full of anxiety and just wanted to love all over them.

I had to turn the news off at the first mention from ABC News, "Shooter was autistic - with personality disorder". The same thing happened the day after the Aurora, CO shooting. Joe Scarborough of MSNBC said "These shooters are young, white, men, possibly autistic, loners". Well Joe, you're a jerk.

 On top of an overwhelming sadness for these poor babies, teachers, and school officials taken from their families, I'm so pissed off at the media for their blatant malpractice and lack of research on Autism.
Piers Morgon on CNN had a psychologist who stars on a BRAVO reality show listening to millionaire cocktail queen Bethenney Frankel whine about her poor pathetic life GAWD, blathering misinformation about Autism. Yeah, that's a great source to give you information about Autism, my GAWD. Piers Morgan then goes on to say how autistics are missing something in the brain. WELL THANK YOU PIERS. You and your over weaning ego have solved the mystery of autism. He also stated they are unemotional and unaware of right and wrong. That expert opinion of his is just mind blowing! I wanted to reach through the TV and punch his arrogant pompous English accent right in the throat. Him and his arrogant smug look on his face set back autism acceptance by years.
So as other reports are stating Autism is a mental illness, personality disorder and behavior disorder. Over and over to the point of nausea. The whole thing was sickening at how lame most of the media now is at their jobs.

As the parent of 2 small children with autism, I am pissed that the entire media has set back autism acceptance and awareness years. These children have so much social stigma on them already, so much to fight through just to do what typical children do. It was all shoved to the back of the bus by the large sweeping statements made by many bloating windbags who did nothing but damage an entire community of people by their false misleading, misguided and uninformed reports. My son does have public temper tantrums and outbursts, and can at times be aggressive. I get the stares, I have had friends stop bringing their children here to play, what we really need to do is throw psycho killer on top of the stigma they have to carry on their tiny little shoulders. Thanks a lot media. I thought your job was to tell a story of what happened? Clearly not your practice anymore. They literally set back the acceptance and understanding of autism years.

As I lost most hope for those in the media CNN's Dr Sanjay Gupta proved to be the voice of reason via social media. On his twitter feed "Something needs to be clarified, there is no evidence of a link between autism and planned violent behavior". Then Anderson Cooper took to the airwaves to debunk the myths being reported about autism. So to Anderson thank you, to Megyn Kelly thank you, to Dr Gupta, we appreciate your truth, support and common sense in your reporting.

And I think as the talking egos got the picture via social media that they lit a fire that they were not going to control the rage they brought out in autism parents, the phony "clarification" starts coming in. Fox News today had a panel of parents of children with Autism on Megyn Kelly's show "America's Newsroom". Megyn Kelly "Autism is not a mental illness but a neurological disorder." And believe it or not that is not very hard to research. That exact definition is on the CDC website, the Autism Society, Autism Speaks. So clearly our media and the so called journalists and anchor people no longer like to work they just want to report something first.

My heart hurt for my kids and then I was just overwhelmed with the thought of if a shooter came into my kids class. My son cognitively would not know what was going on, he would not receptively understand instructions from the person trying to hurt him or help him. The sensory overload of his nervous system would probably cause him to do something that would end up costing him his life. THAT IS THE REALITY OF AUTISM that the media is missing. These kids are more likely to be the victim, the helpless, silent victim of a crime than the perpetrator.

The pain that I feel for these children with autism that now have a new battle to overcome. They now have to fight their way out of the reports of idiots that know not what they speak. There are too many people that take the media seriously and will now be afraid of people with autism, will make more of a stigma on the kids than they already have. I have a friend that always tells me "Your kids don't play with mine" "They don't share", "They don't want to be friends with my kid". I have to constantly fight that kind of ignorance, and now I have to be an advocate for all the kids and families with autism that our kids aren't going to turn Psycho Killer. Thanks for that Piers, you're a GEM!

This is a tragic event for so many and we should not lose focus on that. However, the media has a responsibility to use their platform to inform the public. It does not have the right or invitation to fill minds of masses with information that is incorrect, especially when it has the capacity to hurt many more.

I will always pray for Newton.


Rebecca

I Will

As I have wiped tears from my eyes all weekend thinking of the parents of the children who were murdered on Friday at Sandy Hook Elementary School in Newtown, CT because of the feeling of powerlessness over evil.

But I can not send my kids off to school today feeling powerless, I need to put in my head the things that I can do to help keep mine and other kids loved and safe.

I will empower my children
I will be kind to people
I will do my best to help those struggling
I will hug my children and love them everyday
I will be aware of the surroundings
I will make myself a known figure on campus
I will do my part to teach kindness
I will look for children and adults in pain and try to be a means to help them
I will not live with my head buried in the sand
I will point out those that are suffering or seem to be in pain or anger to those that can help

I may not be able to prevent a psychotic madman from doing unspeakable things, but I can if make the community aware, that is doing something.

I want to make the world a place that I want my kids to live in, and it isn't that place right now.  The parents and families of those 20 little souls that are in Heaven, were just walking through life doing their normal routine and in 1 minute their lives were crushed.  Why? Why? Why?  What did someone not do?  Where did a life go wrong?  What was missed?  Why? Why? Why?  The only true right answer is that Evil will always find away.  Evil is powerful and evil is baffling, and shocking and unexplainable to most.

I can't live being a part of the why, I have to be part of an answer, a solution, or what is the point of living in a community? What did this teach me?  Be kind and aware of those around you and love your kids even when he shredded all my Christmas cards that I addressed and stamped last night.  LOVE THEM, make sure they know you love them all the time no matter what. 

I don't know why, I just know that there are those out there hurting and crushed and maybe love and kindness is at a shortage and we need to more hugs and less dirty looks and fist a cuffs. 

God Bless Sandy Hook Elementary and Newtown, CT.  I pray in all this there is comfort somewhere for you and peace in your hearts and a relief of your pain.

REBECCA

The Athlete In Me

I was really moving along and kicking ass, and was inspired to find this inner athlete in me.  Earlier this year I participated in the Barry's Bootcamp 30 day challenge.  It was an amazing opportunity and an incredible workout.  Kara Perez the manager at the Irvine, CA location was key to helping me find the athlete that had been buried under years of inactivity.  In the 30 day challenge I found my wind, I found speed, and I found strength that I never thought I had.  I was able to train and successfully complete 2 half marathons, a couple of mud runs, and put some miles on the road in Mission Viejo. 

During the challenge I lost 16lbs, and really was able to do more than I ever thought my middle aged, cancer stricken, overweight body could have ever done.  But I did it.  I did it with this tiny little girl Kara yelling "Yes, it's going to hurt, so what, keep going!!!!",   "It hurts, it sucks, but the hurt brings the body you want",  "DON'T STOP"!  She would tell me what to eat, and when to eat, and how to move, and what to do.  I felt the best and strongest that I have ever felt in my life.

Over the summer, I continued working out and running and completed my 2nd half marathon.  I did get a little complacent about my fitness.  My son spent a week in the hospital, autism was running rampant, and I put myself last on the list, and didn't properly plan to take care of myself.  My eating went to hell and my fitness fell apart - I'm not where I started, but I gave into the chaos of the house for awhile.  But I'm over it. 

Sweaty mommy is a happy mommy

I feel like Kara Perez is that little Angel on my shoulder and she is screaming at me to "KEEP GOING".  So to do that I have to incorporate everyone.  I'm turning these two little autistic boys into runners, and hikers.  They like to be outside, and they like to be with me so we are hitting the trails.  Who says that they can't be athletic?  I mean really fitness is a family deal.  If I'm fit, I can share it with everyone.  The boys go with me, we walk, we trot we run we play.  Part of autism is that theymay have low muscle tone, well not if I can help it!! I am making them do the things with me that I didn't want to do with Kara at first.  But they are participating and now asking to go out to the greenbelts and run, and play, not just sit and watch TV.

I really am a runner and an athlete no matter what my head says.

So I thank you Kara Perez and all your training because your voice stuck in my head these past few months, and Barry's Bootcamp for drilling that inner athlete into me, and not letting her die.  I will be back,  things are getting better, and I'm learning that if I fail to plan for myself, then I am planning to fail.  So this middle aged mommy athlete is getting back on the treadmill and getting her game back on, so I can teach these kids and keep them healthy.  This is a family, and we will all be together in fitness rather than on the couch.

So as we slide into the holidays, I won't be pigging out, I'll be running, lifting and repeating with a tiny little girl yelling at me.  Because truthfully, isn't the best gift I could give everyone in my family a healthy me???


 

Rebecca

Grateful today and everyday - even when I forget

I have been trolling around on Facebook and seeing everyone's daily item of thankfulness or gratitude, and somedays I'm not feeling particularly thankful.  Even though, I have an abundance of things to be thankful for.

Today is one of those days where I feel like my cup runs over, and while I have the ability and the memory of this moment where I'm looking at everything in front of me with immeasurable gratitude, I want y'all to know what I am thankful for.

My family - That husband that drives me batty some days, he is a gem sometimes too, and a work horse and a good dad and provider.  My amazing kiddos, they taught me a love and drive that I never thought I was capable of.  My parents are amazing, they would do anything I ask and love my kids with all their hearts.  My brother, sisters in laws and all the nieces and nephews we feel blessed to have all of you in our lives.  There is a wonderful lesson of socials skills and friendship that is taught with cousins first, and our family does it up right.

Autism - Yes, you read it correctly,  I am grateful today for autism.  While I do hate it with a passion, it allowed me to find a strength, conviction, and a drive to do for my kids that I did not think was humanly possible.  I think autism gave me the patience, tolerance and love for my kids that fills every gap on earth.

My home - It's cozy, chaotic, and pretty, and I love it.  It was the first place I brought my kids home to and I just love it, and am excited this year to cook our first Thanksgiving 8 years after moving in :)

My grandfather - He's been gone for many many years.  But those words that he said to me when I was a little girl "I work this hard so you won't have to and can be happy" - Well Nanu - you have given a gift to my little boy that I will NEVER be able to express the gratitude for helping us crack that shell of autism.

My running shoes - they gave me my sanity, every pounding step took some pain and made me a stronger woman, wife, and mom.  Still the cheapest form of therapy I could have ever found.  The miles and races I have run have kept me from the brink of insanity more than you can ever know.

My friends - to my new friends, and my old friends, who have stuck by my side through autism, cancer, fat, thin, rich, poor, crazy and through the laughter and the tears.  Even if we only chat on facebook, I'm so grateful for the outlet and insight into your lives.  

For Brain Treatment Center, Coyne and Associates, Regional Center, Surfers Healing, and Social Kiddos Playdates, and all the moms groups and friends that we have made through this autism journey.  I respect you and am grateful you have trudged this road before me and taught me how to be a warrior mom.  And for all the fun and "normal" things you make possible for my kids and others to experience.  This would be a lonely ride trying to do this alone, so I applaud all of you and your efforts and hard work to make our family included.

 Happy Thanksgiving!  And don't forget to Give some Thanks!

 

Rebecca

Knott's Can I count the ways I love you?!!!

We live in the land of theme parks and Hollywood.  In this crazy economy, the world of toddlers and special needs, I have found the place that my boys love, and when they don't the staff and park is INCREDIBLY accommodating to my family.  Knott's Berry Farm I love you.  You have given so much to my kids by way of fun, family, and a normalcy that we don't get in all places.

I love your Mother's Day Brunch, your Easter Egg Hunt in Camp Snoopy, I love Camp Spooky, and my favorite time of year Knott's Merry Farm for Christmas time.  I am not leaving out the spectacular Halloween Haunt that they superbly execute every year, but 4 and 6 year olds are not too keen on that yet, but I am hopeful in several years it will be a family outing we all look forward too.

If you go to special events such as Camp Spooky at Halloween time, your kids get such extra special treatment, and have a blast.  There is trick or treating, cookie decorating, story telling and (a quiet place to go to when the kiddos are on overload), hay mazes, and of course all the Peanuts Characters.  Camp Spooky has age appropriate rides that give the little ones a thrill without putting fear into them, and gave my kids laughter that I LOVE LOVE LOVE to hear.

They do it up right for the holidays.  The Marketplace is decorated to the nines and if you an not get festive after a visit, then you may be hopeless.

But in Southern California there is not by any means a better value, a more fun and family oriented place than Knott's Berry Farm.  I'm so looking forward to Knott's Merry Farm and getting our Season Passes to give to the kids for Christmas.

#campspooky he loved Snoopy

He really liked it until the big hill

We got a lot of laugher and vocals here!

The BEST Mother's Day Brunch EVER

Amazing Christmas for #MerryFarm

Thank you again Knott's for treating kids with Autism with dignity and respect and being patient when they need it.  This is a place we go where they get to do the things typical children get to do, and they enjoy and love going there, and for that, and that alone I will be eternally grateful.
 

Rebecca

Punching Autism in the face

I'm not sure if today I'm the happiest mother on earth, but I could be close to it.  Autism is a way of life in our home.  I have two kids with it, and one is severe, and one is functioning with it, and has a lot of sensory issues.  My older son is non verbal and has many issues that make it hard for him to communicate, and very hard for me/us/anyone to pull him out of his world. 

We made a huge decision to try a new experimental therapy on our oldest son Franklin.  It is called Transcranial Magnetic Stimulation.  In the last couple weeks he has gotten EEG's and TMS on his brain 7 times, and things are starting to happen, they first showed up on EEG, and now behavior and he is changing so much for the better.  It is not Large Enormous changes like him all of a sudden speaking in sentences.  But it's getting a TON more eye contact, he is seeking me out to play with him, not just take him potty, get him food, or open a door.  He is getting my attention to play with him,  he drags me out to the swing set, he asks for more of me to give him piggy back rides, he wanted my husband to lie down on his bed with him as he chattered away until he fell asleep.  THAT NEVER HAPPENS, he has always wanted to be alone  when it was bedtime.  My husband was nearly speechless that Franklin wanted to have all that alone time with him.  He nearly didn't know how to respond.  Amazing.

My little guy is just responding to his ABA therapy in life changing ways.  His language has just recently exploded with new vocabulary.  He is getting less echoic and more reciprocal in his conversation.  He is parallel playing with kids, he loves going to school.  And tonight the hugest of huge things happened, after 8 months of consistently and daily working on potty training, the little bastard FINALLY went on the toilet.   We nearly threw a parade in his honor.

So this week, we in our home, were busy, making strides, and fighting with all our might and punching autism in the face.

I have fought so hard this last month with behaviors, meds, changes in my kids, and have let myself go.  I have irregularly been running or doing anything good for myself,  my kids doing so well is a consolation.  However, I will make this commitment to you to get back on the fitness track and take care of myself FOR MY CHILDREN.

Rebecca

Which Disney Princess Are You?

A month ago I participated and finished the Disneyland Half Marathon.  It was my second half marathon and I improved on my time and it was an INCREDIBLE race.  Disney does it up right for sure.  The first 3 miles of the course were running through the Happiest Place on Earth and Disney's California Adventure.  I haven't been to Disneyland since my kids were born so the new Cars Land was absolutely AWESOME.  In my home we watch Cars EVERY DAY, so it was more than great to run through Radiator Springs.

As I ran through Disneyland and came through the castle I was thinking of what Disney Princess I actually am.  I was pretty emotional running this race.  I was running a strong race, faster than my first half marathon, and I was in a place that I truly love.

When I think of where i was a little over 18 months ago, I couldn't run 13 feet let alone 13 miles, I was severely overweight, and was just a hot mess in so many areas.

Cinderella kept popping in my mind, and not because of my ability to rock a ball gown like she did, but because of her life before the ball and prince.  She was stuck in this castle basement with her evil Stepmother and horrid Stepsisters.  3 years ago when my son had been diagnosed with autism at s old, we literally became prisoners in our house 30 hours a week of therapy in our home. I had a 2 year old and a brand new baby, and I was literally stuck here in the house, and Autism was the step sister that was just plain mean to me, my kid, and our family.  Then 1 year after that I was diagnosed with breast cancer, and that was the 2nd horrible step sister.  Breast cancer was mean and abusive to my body and soul, and tried to crush me.  After 1 year of surgeries and recovery, I had to take control of something autism and cancer had done some damage to my psyche.

My fairy Godmother was the treadmill in our garage.  Rather than taking an anti-depressant, or hiding in my house forever, I just made a decision that NO MATTER WHAT I would sweat for at least 20 minutes everyday.  So I cleaned off the treadmill, and got on it, walking, jogging, running.  Yes, me that fat lady was RUNNING. 

That treadmill (the GodMother) transformed me and my body into a strong mom, a lean mom, and beautiful on the inside and out mom.  It helped me conquer the hurt and damage of autism and cancer and all the chaos that they brought to our home. 

I did more than run the treadmill, I became healthy, fit, and fun. I became a FitTastic Mom. I found an online group of 8  women and followed their example and their blogs, and was transformed into "Cinderella" and the ball was the Disneyland Half Marathon.

So as RunDisney is my Prince Charming and my ball is the Disney Princess Half Marathon on my 45th birthday is the ball so I can meet my "friends" and in real life, and hold hands as we run through the castle together as the closets thing there is to running royalty.

Rebecca