Wednesday, July 8, 2015

Who says that you deserve this?

Jim Carrey annoyed me.

It wasn't the way he usually annoys me, which is with his movies. God bless him for having a niche and running with it (and I actually think he is an excellent dramatic actor) but Dumb and Dumber and Ace Ventura just aren't my thing. My husband loves Jim Carrey. Go figure.

This week, Jim Carrey let loose with a Twitter rant, blasting the recently-signed-into-law referendums in California that place strict vaccination requirements on any children entering pubic day care or school. Spurned by the recent outbreak of measles that was eventually traced to the Disneyland theme park in Anaheim, the law. The new regulations leave very few families eligible to opt out- only children with a documented medical case for skipping vaccinations with be exempt. Families can no longer site religion or personal preference as a reason to pass on vaccinations if they want their children to attend public school is day care facilities in California.

Carey, a long-time proponent for change in the manufacture and  administering of vaccinations (apropos of nothing, he was in a relationship with, perhaps, the most well-known figure in the anti-vax movement, Jenny McCarthy, for many years), blasted the bill in a rant complete with pictures to illustrate his point. You can click here to visit Carrey's Twitter page and read his thoughts. 

The problem was the rant (more on that in a second), but it was also the picture he painted. Each tweet was punctuated with a picture of a child with Autism (or what was proprted to be a child with Autism) in varied levels of distress- crying, tantruming, etc. One of the tweets featured a boy named Alex Echols. Alex was diagnosed as an infant with a disorder called tuberous sclerosis, a rare, genetic disorder that causes the growth of non-malignant tumors anywhere in the body. According to the NIH, one-third of children with TS meet the criteria for a diagnosis of Autism. His picture was used as a prop to further illustrate Carrey's rant about vaccines, their perceived destructiveness, and connection to  Autism, and it was used without permission. This prompted Alex's mother to sign up for Twitter solely to reach out to Jim Carrey and ask him to remove the photo. He complied, and offered a brief apology via Twitter.

I get that this is kind of a big buildup just to explain why Jim Carrey annoyed me, but stay with me here.

I chose to vaccinate my son. It was never a question. This really isn't an anti-vax issue for me, no matter how misguided I think Mr. Carrey is. To be fair, neither of us are medical professionals, and any conclusions we draw come from what medical professionals we decide to trust. In fact (are you sitting down for this one?), I don't totally disagree with a few of his points. I would like to see the additives and preservatives removed from vaccines. I think the vaccine schedule is kind of aggressive (sometimes four shots at once??? Pass. I know it means a return trip, but my policy is "Two arms, Two shots.) and I don't know if one-size-fits-all is right for everybody. So, there you go, Jim Carrey. We see eye to eye on a few things. No hate mail, please.

What annoys me is that he used those pictures to perpetuate the idea that Autism is some kind of tragedy- that to expose your children to a potentially deadly disease is still somehow better than
having a child with Autism. He plucked these pictures up and used them as an example; expose your child to vaccines and reduce them to this, this life of meltdowns and hardship and struggle.

Well, no offense, Mr. Carey, but you can suck it.

Seriously. How dare you? How dare you reduce my life and my family to a blighted blurb? If you choose to carry beliefs about vaccination, go ahead. Sound your barbaric yawp over the rooftops of the world. But don't hold up Autism as some kind of threat, some kind of punishment for our choices. Parenting a child with Autism is not easy. It is hard, emotional, expensive work, and it is not what I wanted for my son. But whereas measles would be something that  would happen to PJ, Autism is a part of who he is. I would not trade away Autism because, to do that, I would have to trade away my son. My life as his mother is what I wanted, and his life is no tragedy. To suggest that avoiding a (perceived) risk of Autism is worth risking death is embarrassing and hurtful and, overall, and makes your campaign look less "concerned citizen" and more "zealous loony." And if your arguments could stand on their own, Mr. Carrey, you wouldn't need to paint my life any other way than what it is.


Our life is not perfect, and that is not entirely due to Autism. Nobody has a perfect life. But my son is healthy and here with me. My life, PJ's life, and the lives of all of the families who face Autism are not fodder for threats or fear.

Wednesday, July 1, 2015

I'm ready to play...

Autism can be a huge pain in the ass.

Yup. I said it.

Autism is hard and frustrating and expensive and time consuming, and it is not what I wanted for my baby. But as hard as it is, those times do not make up the majority of what our life with Autism looks like as a whole. We are only one example but, most of the time, we are a happy, healthy family raising an amazing, happy, healthy child.

On the rare, blessed occasion, Autism offers us gifts we never thought we would ever receive. They come in moments like PJ's first two-syllable word, or the first time he played with another child without prompting. As PJ gets older, the gifts expand to include the big days with the small moments. Surfing was our first "big day" moment. A few weeks ago, another one came in the package of the Special Olympics.

PJ brought trains to the Olympics. As one does. 
The Young Athletes Program allows children as young as 2 and as old as 7 to try out a number of sports, honing their skills as future Olympians and working on crucial social and physical skills in the process. The Southern NJ Special Olympics hosted this particular event to coincide with the Summer Game, so as the little ones took to the field for the first time, seasoned athletes competed in summer Olympic events.

We woke up early on a hot day to head to the College of New Jersey (which, by the way, is a lovely campus- spotless and green and beautiful!). The air felt charged as we arrived to a packed field of Olympians and families. Our events were on a separate field, so I didn't get to see as much of the Games as I would have liked, but the cheers and encouragement from the spectators drifted our way in waves, reminding me that these Games are for real. There is nothing pretend or consolatory about these Games. The athletes are real. They have sacrificed, practiced, and  dedicated so much of their time to reach this amazing milestone in their sport.

PJ and his buddy, Jospeh
On the field where the Young Athletes gathered groups of kids, each led by a volunteer "buddy," dabbled in different sports. PJ honed his pitching arm at the throwing station, worked on his leap at the long jump, and let things fly at the javelin throw. PJ especially loved the baseball station, where Coach Megan (a lovely coach who connected with PJ almost immediately) helped him work on his catching and batting skills! PJ even tried his had at bocce, the Young Athlete courts set up alongside of Olympians competing in the very same sport.

PJ working on his T-Ball skills with Coach Megan! 



It was hot (and PJ is not always a great sport about being in the heat- a Winter Olympian, perhaps?), but despite that, the kids seemed to soak in the opportunity to try new things, throwing javelins and hurling baseballs with concentration that surprised me. And at the end of the first set of events, the kids and their buddies filed out on to the same field where, just a few minutes before, Olympians had competed for medals and glory in track and field events.


The last event was a sprint, and the kids ran in heats, crossing the finish line to wild cheers from all of the parents and spectators crowded into the stands. The kids were met there by a row of volunteer law enforcement officers who offered high fives, hugs, cheers and draped medals around the kids necks.

A few years ago, I remember watching President Obama on the Tonight Show- Jay Leno was still the host. They were talking about bowling, a sport that the President admitted to being awful at, and he likened his showing as similar to an event at the Special Olympics. At the time, I cracked up, despite the fact that my own son, diagnosed with Autism, was tucked into his bed a mere room away. I know that it was an offhand remark that was not intend to incite offense, and when he received some backlash for his statements, I wondered why.

Now, I know. And for me, it's not so much the slight to the disabled, but the idea that Special Olympians are sub-par, whose display of athleticism is somehow laughable. I watched these Olympians lay it all out on the field, and the idea it is not every big as thrilling, every bit as skilled, and every bit as meaningful as conventional sporting events is what's laughable. And offensive.




I watched the sweet law enforcement volunteer drape a medal around my sons neck and teared up. PJ had worked so hard that day, despite the hot weather. When he was first diagnosed, I mourned all of the things I thought he wouldn't experience. Of course, as he has grown, our world has grown and the things I thought were off-limit suddenly become very real. PJ has the world at his feet, and I can't wait to see his next steps.


A few more pictures from the day: 

PJ and Noah- best buddies, school friends, and Olympians! Plus, this picture cracks me up! Love these two!  




The face! I can't!!!!