So...I decided not to write a blog for Autism Awareness month. Seems crazy right? Well, everyone else was writing lots of articles and blogs for the month, and it was great to see new people getting vocal about Autism. I enjoyed sitting back and watching people shine. Then May 1^st hit and it died down, and people seemed to go back to their normal routines. So why didn’t I write anything? Autism Awareness is something that should be “celebrated” all year, not just one month. I wanted this blog to be a reminder of that.

It was nice to watch people come from the woodwork to honor Autism in April. There were countless articles that were inspiring, and houses were lit up blue! Why did it stop there? Autism doesn’t just last a month; it’s a lifetime of ups and downs. Sure, the extra support in April is great- but with Autism being the “top” developmental disorder right now, why aren’t more people rallying year long?

 I got to be part of several wonderful benefits for Autism this past month. My favorite? I was absolutely honored to cohost the Funny Business radio show with Ed Asner last week. For those of you who may have missed the memo...he starred in Mary Tyler Moore, acted in countless fantastic films…but my favorite…he was Santa Claus in Elf and the old guy in Up!! He has a son and a grandson with Autism. You can check it out here!  Thank you to Mike Bova who let me be part of this. http://www.blogtalkradio.com/funnybusinessradio/2012/05/02/brielle-lacosta-zack-gonzlez-ed-asner-jenny-mccarthy

 Don’t forget!!! Autism Speaks here in NJ is having their annual walk this October. I want to see everyone there! Several corporations will match donations- does yours? Put a team together and come out and walk! No, it is not a mini-marathon. No, it does not require you to start training now for it. No, it’s not a race where you will be sweating and sprinting towards the finish line (well, I mean, you can…but you may be the only one). It is a fantastic day for families to get out there and walk to support Autism!

 Okay, time to get to the point. I must warn you that this blog is not going to consist of butterflies and rainbows. I witnessed something yesterday that really annoyed me…leading me to the name for this blog.  A lot of people ask me, “What was the hardest part about being involved in pageantry?” It’s simple: the “haters.” There is no better word to describe them. My definition of a hater: someone who shows jealousy, hatred, spreads lies about you, picks you apart, doesn’t believe in you, and would love to see you fail. Sadly, these people are everywhere. To be honest, this was the hardest part I had to overcome. It was incredibly difficult to be at an event for Autism, or any cause for that matter, and notice the glares, hear the whispers, and have people criticize to my face. They have never met me and they don’t know my story. I didn’t understand, and had to keep cool and not become defensive. Often it brought me to tears, and I did not understand how people could be so cruel. Where am I going with this?

Yesterday I was at my beloved Target when I noticed a child- I would say about 9 or 10 years old, sitting in the cart while his mother pushed him. Obviously, he was too large for the cart and it certainly drew attention. While perusing the food aisles, we ended up in the peanut butter aisle together. Now it was pretty obvious the boy had Autism. He made several sounds and flapped every 30 seconds or so. We were only a few feet away from each other, so I said hi. The mother looked pretty surprised and prompted her son to say hi back. He had big blue eyes and a faint smile as she moved his hand for him to wave. I said to the boy enthusiastically, “how are you?!” This is where I just could not believe it.

The mother said abruptly, “Oh, he doesn’t understand that. He’s Autistic. He can’t talk or understand you.” First of all, how could you talk that way about your child? Second of all, why aren’t you his number one advocate? Aren’t you happy I did not run the other way when I entered that aisle? I’ve seen the way the public acts towards Autism. But the worst part…why does she have to be such a hater? I know she is his mother, but seriously, who is she to say he doesn’t understand? She has already decided he will amount to nothing. Who says? I cannot tell you how many times I have witnessed children with autism not receiving the teaching they deserve because their instructor/teacher “assumes” the child just won’t get it. Just because many are nonverbal, does not mean they won’t understand. Why are most people such haters when it comes to Autism? Then they wonder why some of these children act out and become aggressive? Trust me, these kids understand. There are so many articles on the Internet about nonverbal children with Autism who used an iPad to type how they feel. Several of them made it clear they have understood everything- their entire life. Like I said before, I had an extremely difficult time dealing with the haters and that was just occasionally. Can you imagine dealing with it everyday- and also having Autism, and not having a voice to defend yourself?

            If you have a child with Autism, I know you’ve faced frustrations and felt like your child may act out “on purpose.” This may be true- but why are they doing it? They are people too, with emotions, who UNDERSTAND. I cannot stress this enough. If you’re a teacher, I beg you not to give up and just give children with Autism “busy work,” or a puzzle to entertain them while they are in your class. Most of society won’t even bother to try- children and adults with autism don’t have many people fighting for them as individuals. When I visited Celebrate The Children, some of their nonverbal children were learning CALCULUS. It was inspiring. Trust me, these children with Autism understood and could complete problems- silently. Have you attempted something like this? Do you truly know what your child is capable of? Please remember, nonverbal does not equal dumb.  So I guess all I am trying to say is, don’t be such a hater. 

I am almost 100% better, bronchitis is something I get about four times a year and it wrecks me. My lungs are in rough shape from my car accident a few years ago! Anyway, I have been trying to think of some great amazing topic for my next blog- but that's no fun. I rather just write what comes to mind. I hope you are all doing well, and thanks again for reading!

After my first few posts a lot of you have asked me questions to still get to the bottom of why I "care." I'm not real sure why it is such a shock that I care very much about Autism and bringing about awareness...? It's sad how people assume that since I have no personal connection to Autism, I "must be trying to gain something from it." Untrue! Just because I'm not a parent, or have a family member with Autism, does not mean I don't get it. Working fulltime with Autism provided me 8-9 hours a day of interactions, and many parents don't even get that much time with their children because they get home from work late and their child goes to bed three hours later. I have seen the ups and downs, and I have seen families torn apart by financial burdens and not knowing where to turn. Parents these days, ESPECIALLY parents coping with Autism, don't have a ton of free time- so why not do the advocating for them? You would be shocked how many people look at me as if I have six heads when I say I advocate for Autism. I often hear "oh, the slow kids?', or "do they do crazy Math?!" Ohhh society. It's interesting and frightening how many people will give you every detail of Kim Kardashian's pending divorce (no offense Kim, people love you, keep rockin it!), but they don't have a clue how prevalent Autism is, or what exactly it is. Why am I not seeing popular TV shows air episodes where Autism is given a spotlight? I personally am tired of seeing a few TV specials air shows about how amazing high functioning Autism is. Why not show the low functioning AND high functioning? Show the nonverbal kids, the tantrums, the biting/hitting/kicking, and the stereotypical behavior. I just do not think our country will "get it" till they see how severe it can be. Show the parents who sleep three hours a night and are working two or three jobs just to afford medical care, show the siblings who are having a hard time coping. THAT is the kind of stuff the world needs to see, not reality shows about partying.

So another popular question which I have just recently decided to address during a few interviews is "and..why did you pick Brain Cancer to advocate for as well? Autism and brain cancer?" Just over a year ago my Dad was diagnosed with brain cancer, at just 52 years old. Ever have something happen that literally makes you feel like your world stopped turning, but everyone else keeps going? That's what this was for me. My Dad is one of the toughest, strongest people I have ever met. He owned a fantastic successful business, he raced Motocross for Honda, he could do it all. People absolutely love him, and I have NEVER heard him raise his voice or yell. Never ever. Honestly, I didn't really know how to deal with it, so I chose not to discuss it. The few people that knew about it begged me to make my platform brain cancer, but I just couldn't. I NEVER want to come across like I am seeking pity, or advocating for something that will directly benefit me. I have been seriously affected by this, but I don't know much about it. I have not been directly affected by Autism, but love learning about it and have a passion for it- see the difference? My Dad had emergency surgery to remove a tumor the size of a grapefruit. Sadly, they were not able to remove the entire tumor from his brain, and were forced to leave part of the tumor. My Dad goes to chemo twice a month, and it is incredible to see his spirits are still high. Sooo...that is why I also chose brain cancer as well, it is becoming more common and several doctors are looking at cell phone usage... 

You know those stupid "Would you rather" games? Would you rather be deaf or blind? Never have to eat again or never have to drink again? My brother and I play that from time to time, and I was thinking about this today. Would you rather have a child with Cancer or Autism? Let me tell you, I rather have a child with anything BUT Autism. Sounds extreme? Let me explain why. With cancer, or diabetes, etc., you can have a test or a CT scan, etc and your doctor will say "Okay, you have _____ and it is stage _____, the prognosis is ______ and this is the treatment _______. We will run this test, start you with this medicine, come back in four weeks." With Autism, parents are like rag dolls going back and forth for a diagnosis, then a second diagnosis, maybe a third just to be sure, then a genetics specialist, a developmental pediatrician, a neurologist, it goes on and on. Each doctor always has something new to say, and before you know it you have compiled a list of 20 different potential problems and not a clue where to start. It's overwhelming and it seems like if a child is slightly delayed, they are immediately slapped with the label of Autism. I cannot tell you how many parents I have met thought for a year or two that their child had Autism, only to find out the child was simply delayed. Anyway, with Autism, parents will just hear "Your child has Autism..." then crickets. There is no prognosis, no "stage," no "this is what's next." It is 100% a mystery. There are great days, and there are terrible days. With cancer, etc there is a start and there is an end, and a lot of details in between. Autism does not have a known start and end...with Autism, there is a start and then a million unanswered questions. Every day is trial and error, some things work for awhile and then suddenly stop, sleeping patterns are thrown off and one of the WORST parts- many times the child cannot even communicate what hurts or what is bothering them. There is no knowing what will come next, and that is terrifying. Every disease and developmental disorder is awful, but I really cannot think of anything more stressful, frightening and heart breaking as Autism...can you?

It is school week for me! I had the honor of being invited to tour and meet the students at Rebecca School, which is one of the MetSchools in NYC. A little bit about this school from their website...

"Rebecca School is a therapeutic day school for children ages 4 to 21, promoting the education and development of children with neurodevelopmental disorders of relating and communicating, including PDD and autism. We utilize the Developmental Individual Differences Relationship-based (DIR®) model. The DIR® Methodology developed by Dr. Stanley Greenspan proceeds from the core belief that relationships are the foundation of learning. At Rebecca School, we consider the variations in individual motor and sensory processing systems and tailor each child’s program to his or her specific needs. There is no “one-size-fits-all” for children with neurodevelopmental delays in relating and communicating. Each child has unique strengths to be developed and limitations to be remediated. Our goal is not to fit the child to the program but to fit the program to the child." 

As you know, I visited Celebrate The Children two days ago which also follows this same DIR® model. Since studying ABA in 2007, it was quite an interesting experience for me to see schools that practice a different model other than ABA. I am always interested in learning about treatment options, and seeing what works and what doesn't, so this was like a crash course in the DIR model. I think it is really important to see both ABA & DIR models in action, especially if you're looking for a school for your child. ABA and DIR are very different, and I think there are several pros and cons to both...that's another blog for another time! For now, to learn more check out http://www.rebeccaschool.org

I arrived at the school at 10am and was greeted by a few of the staff members to bring me on a tour and meet the students. It is located right in the heart of New York City, and is five floors and 60,000 square feet! I noticed some of the same things I noticed at CTC- plenty of staff (all engaged with the students) and tons of smiling faces. Each classroom has sensory equipment like trampolines, mats, and big beanbag chairs. The DIR model really focuses on relationship building and giving respect to the students, which was very evident here. This school offers quite a bit to the students, including an awesome playground- ON THE ROOF! Two classes were swimming at a local YMCA (how fun!), one class was playing in quite a large gym which included a rock wall, hockey nets, scooters and more! Another class was having a dance party (which was adorable), and other classes were learning and just enjoying each other's company. Rebecca School has a fabulous art and ceramics room complete with lots of clay and a kiln which the kids love. They also have two sensory gyms full of the coolest equipment- giant swings, tons of mats, and lots of things to play and climb on! In the hallways you will find kids laughing as they crawl through popup tunnels. They have outstanding music therapists who work hard to help children engage in conversations through music. The older kids go out and shop for their own groceries for the week- they make a list, figure out the money need, and take a trip to the store with the help of teachers. Amazing! 

On the wall of each classroom you will find each child's name, and pictures of what interests them underneath. I noticed both CTC and Rebecca School did this, which is part of the DIR model- to figure out what the child TRULY enjoys and then help them learn more about it. That's what life should be about, right? Doing what you love and learning more about it. Both schools take the time to figure this out, another example of the respect they have for each student- and treating them as individuals. Every Friday the students are dismissed early so the staff can have ongoing group training on a variety of topics. It is so nice to see a school want to constantly learn more and provide their staff with such valuable knowledge!

I had such a great time visiting Rebecca School, and I encourage all of you to go to their site to learn more. They also have a daily open-door policy..so if you want to visit your child for lunch, you can! Want to sit in on a class? No problem! WHENEVER you want! Some parents who work in NYC come to spend their lunch breaks with their child..I love hearing things like that! Thank you Rebecca School for inviting me into your fabulous facility, and letting me meet your wonderful students. Another day I will never forget!