Monday, September 28, 2015

Can we pretend that airplanes in the night sky are like shooting stars....

I am over at Mom Babble today, talking about finding magic when you have a child with special needs! You don't need magic wands or vehicular produce (although how awesome would THAT be?). You just need to believe. Do me a solid and stop by Mom Babble to check it out! 

Saturday mornings mean soccer. Now that fall is
upon us, Saturday means cleats and soccer balls and the amazing support and love PJ gets from his soccer buddies, Anthony and Nick. This particular Saturday, PJ insisted on accessorizing with a vaguely Freddie Krueger-ish hat he found in my in-laws basement. As one does. It was cool and cloudy and slightly Pope-y, and PJ had a great time.

After soccer, we headed a few minutes away from the field to the Air Victory Museum, a small airplane museum in Lumberton. We met my in-laws and the younger boy cousins there, and the kids took in all of the planes and aircraft memorabilia crammed into the space. Everywhere you look hung some small piece of aviation history, and the boys were drinking it in.

After a bit, though, the museum started to overwhelm PJ. There were a lot of things that he couldn't touch, and yet so many things to see. He held up well but as the visit started to come to a close his frustration started to mount. As Pete walked him out of an exhibit, he flopped to the ground, rolling away and kicking at Pete.

Pete's dad wanted the kids to pick out a toy plane as a souvenir, but by then, PJ was past the point of being able to make a decision. I tried to calm him, but he was angry. I caught a head-butt to the cheek just as a package containing an airplane kit appeared between our heads. It was held there by the elderly gentleman who ran the front desk of the museum.

"Hey, buddy," he said. "If you're a good boy you can have this."

Dude. I felt the last of my patience drain out of my ear. The kid was slapping me across the face. It was like putting your hand inside a beehive and let me not even get started on giving a toy to a child who is behaving that way. Of course, I knew where his behavior was coming from (a good, old-fashioned case of fatigue and hunger, exacerbated by Autism) but to anyone else, it looked like a bratty kid having a fit in the souvenir section. Whyyyyyyyyyy would you butt in and hand this child a toy right now?

Thankfully, I managed to gather some semblance of grace, and switched gears.

"PJ, our friend said that you can have this plane if you are ready to show me your best behavior. Are you ready?" I asked. He agreed, and the tantrum seemed to melt away. He thanked his benefactor and we went outside to open his new package and check out the large military helicopter on display.

The boys ran to see the helicopter and I thought about what had just went down. Not so much the tantrum- it was not the first or last time PJ would lose his mind in public. I couldn't stop thinking about how a stranger was willing to jump right into the fray, and an elderly stranger at that. Autism can be a difficult thing to understand when you know what is happening. If you're a bystander who happens upon a kid losing his shit, it looks like a kid losing his shit. Older people, in particular, can have a hard time understanding Autism because it just wasn't a thing for them the way it is now. He could very well have yelled at PJ. He could have asked us to leave. He could have made of of those judgey "Can't you control your kid?" statements. He could have ignored us and avoided eye contact, which is the response I get from 95.3876% of people.

Instead, he saw me struggling, saw an unhappy child, and tried to help. It didn't matter that PJ didn't deserve a toy just then, and it didn't matter that if his meltdown got worse it could have put all of the tiny planes on the shelves in peril. He came over with a green plane in a paper package and said "Here. This is what I've got. If it helps, it's yours."

It made me think of one of my favorite internet finds- a TED talk by Ask Beckham. I have mentioned it on this blog several times- it's something that I come back to often. The message from the top has to do with coming out of the closet, which is something I personally can't relate to. But the sub message is that it takes a lot of bravery to have a conversation you are scared to have. She gives an example of an awkward conversation with family friends, who desperately wanted to show their support after she came out. The interaction, on the whole, was a hot mess of sweetly misfired attempts to show that they still loved her. She admitted that it could have irritated her, but instead, she realized that it may have been just as hard for these folks to start the conversation in the first place. She could take it for what it was- a show of support, no matter how weird.

It occurred to me that just before the gentleman thrust the plane between our faces, he may have wondered if it was the right thing to do, if the crazed child was going to destroy his gift shop, or if I might yell at him. But he decided that above all, he wanted to fix the situation. So, plane. And in the end, I was so grateful that he made the decision to connect rather than ignore.

Thankfully, we made it through he rest of the visit without incident. The boys got to check out the inside of a helicopter and have lunch together. PJ wore that weird Freddy Krueger hat the whole time. Our day wasn't ruined by a moment that could have tipped over into disaster.

Saturday, September 19, 2015

I'm going off the rails on the crazy train.

Motherhood is one of those things that has an ebb and flow. There are days when I feel like a rushing river, crystal clear and moving with a purposeful force. There are also days when I feel like low tide- so far from the beach that it seems like I will never reach the edge again (not to mention the smell. Low tide. Gross.).

What I'm getting at is that this week was straight up low tide. I felt a million miles from where I wanted to be almost 90 percent of the time. We were moving- it was school, therapy, sports, doctors appointments, errands, volunteering, back-to-school night, on and on and on. In my old life, being busy was what propelled me. I liked the feeling of having a full plate and being able to keep it spinning. I thrived on multi-tasking and gloried in my ability to keep things together. This week, I felt sluggish and confused most of the time. The culmination was losing my temper this afternoon when PJ was having trouble controlling his body. He was swirling around the room like a tornado on crack and when he's at that level of disorganization, I often become his punching bag. Well, perhaps not punches, but there is much pulling of hair, kicking of feet, and slapping of hands.There is almost always an elbow to the boob. Spoiler alert: Autism isn't always pretty, folks. Eventually, my loss of temper looked a lot like a crazy lady raising her voice while her face was very. very close to her sons.


PJ was so crazed that he didn't take it personally at all, thank goodness. But I felt out of control and disappointed in myself for losing it. He plopped into my lap and pulled my arms around him. With his head snuggled under my chin, I burst in tears. This prompted a flood of head pats and a stream of "Mommy, it's ok-aaaaaaaay, it's ok-aaaaaaaaaay, it's ok-aaaaaaaaaay," from my son. The whole thing felt like something I would shake my head at if I was watching from the outside. It was a hot mess and I was ashamed of myself.

I would like to say we rebounded and that the rest of the night was lovely. Really, we simply made it to bedtime without any further incident. I guess I can consider that a success in comparison to the rest of the day. I tucked PJ in and it seemed that he still liked me, so I guess it was a wash.

In what will, hopefully, be a long life of days there are bound to be a few duds. Hell, I don't even think that I would want a short life to be all 10's. How on earth do you learn anything if things are perfect all the time? I try to remember that the crap days are meaningful, too, but, jeeze. Watching my baby struggle makes it even worse. But, he's asleep in bed, wiping the slate clean, and I will follow suit shortly.

Wishing all of you a week full of 10's! Bring on the Pope!

Wednesday, September 16, 2015

Let's get dirty...

Hey guys! I'm over at Reedman Toll Auto World today, talking about some great places to take a road trip to! Pile into the car and check out the Elmwood Park Zoo! Just click HERE to check it out!

When PJ was an infant, I was a crazed psycho helicopter mama a little over-protective. PJ was my first, my only, my brand-new little piece of joy and it felt like that much joy must be a breakable thing.

Because of that, I flinched any time someone breathed too close to him, or when he shoved things that were decidedly NOT edible into his mouth. Gross. I feared scrapes on his pale baby skin and anything that might dull the bright blond cloud of his hair. I felt the need to protect him from every little germ or fleck of dirt. 

Fast forward a few years, and am in a place that has let me learn some lessons. I can relax a little bit and enjoy motherhood as PJ’s mom, versus my original methods acting as a general in a battle of germ warfare. This means that if the situation warrants it, PJ can get as dirty as he wants, and his propensity for filth is astounding- PJ could get dirty in a bridal salon. But the germs haven't killed him yet, and it makes letting go a little easier. PJ can jump in the occasional puddle, and he can surf the occasional wave. He can dig his fingers into a mud pie, or he can splay his fingers in to a high vee on stage with his cheer leading team. It seems like the dirtier PJ get, the more opportunities for growth appear, and I can only assume it's because as his mom, I finally just shrugged and said "Pffft. Get dirty. Whatever." 

A few weeks ago, PJ and a classmate had a late summer play date. We met at the playground and watched the kids swing and run and soak in the lovely morning. They circled a puddle much the same way the Earth circles the sun- powerless to its gravitational pull. Finally, the mamas said "Pffft. Get dirty. Whatever." Magic words as my sweet boy and his beautiful friend made imaginary potions, giggling and smiling. 

Of course, I fear that our “let the dirt in” attitude could be a challenge come puberty, and I feel like I should apologize in advance to his future life partners about any off roading, surfing, ditch digging, gardening, mud runs, insert dirty activity here that he might have an interest in. I am deeply sorry for the laundry this will cause. But maybe, just maybe, if PJ has babies of his own someday, they will learn the same lessons, and he will remember when I was learning mine.  Letting the dirt in means letting joy out, and it can be worth the risks. Right now it’s my job to be brave enough to let go. Later it will be PJ’s job, and I hope to set the right example.

PJ and a sweet school buddy enjoying a mud puddle during one of the last days of summer vacation. 

Monday, September 7, 2015

I'm taking what they giving 'cause I'm working for a livin'.

Kim Davis. Bless her heart.

In case you have been so busy clinging to the last days of summer that you haven't turned on a TV or perused the internets, let me briefly fill you in:

Kim Davis is a county clerk in Kentucky (say that five times fast) who has refused to issue marriage licences to gay and lesbian couples seeking one in her fine, fine state. This decision is in direct defiance of the Supreme Court ruling marriage is a benefit that everyone can lawfully take part in. Ms. Davis, however, feels that this decision goes against her personal moral safe zone and will not issue the licences. This decision has landed her in jail for contempt of court. She remains there as of tonight (Sunday the 7th), not willing to back down from her stance but also with no intention of quitting her job.

It is almost too easy to start pointing the finger at her personal choices, the irony in a woman who feels such conviction for the sanctity of marriage having entered in the blessed union four times. Divorce is most certainly frowned upon in the Bible. Having children out of wedlock is, also, another biblical rule that Ms. Davis has tossed aside. There is a saying about glass houses and it did not take very long for the world to take some Windex to the home this woman has built.

My main problem with her is this:

When I was a working woman, in a magical time before I had children, I was a work-a-holic. I often had two jobs and worked seven days a week. I liked my work, but I certainly did not always agree with every decision my superiors made. Some of those decisions hindered my work, made things more difficult in some way, or were down-right dumb. But I wasn't signing the paycheck, I was merely earning it, and the decisions were not mine to make. My job was to perform in the manner that was expected of me. I could think something was dumb but if I wanted to be paid, I sucked it up. There was even a time that I chose to leave a job because I disagreed so strongly with my superiors.

You should always stand up for what you believe in. If you believe that strip clubs objectify women, don't patronize them and, certainly, don't become a stripper. Becoming a fully-clothed stripper who only used the pole to lean on while reading chaste literary classics is not meeting the requirements of the job and will not make you any money. You can have your religious beliefs, and you can have a job. Your boss can't fire you just because you have your beliefs, and you are free to practice them as you will. It is not your privilege to not do you job because of those beliefs. You are not forced to work any particular job, and you are not forced to stay in any job that is not in line with those beliefs. But if you are not in charge, just collecting a paycheck versus signing them, that you are expected to carry out your job duties whether you believe in them or not. Kim Davis is not doing her job, and therefore should be relieved of her duties.

Of course, right now Kim Davis sits in a jail, gaining notoriety and, no doubt, crafting the first chapter of the book she'll have someone ghost write for her write when she gets that inevitable book deal. She gets to be a martyr for her cause, and I don't doubt that she enjoys it. Personally, I would let her ride into the sunset. Let's not let get used to the idea that you can just up and stop doing your job and still get paid.

Thursday, September 3, 2015

Your faith walks on broken glass...

So, I wrote this last night while I was drinking wine. I forgot to hit "Publish" because, wine. So, that.

Today was the last day of summer vacation.
I wanted the day to be full of magic.
I wanted it to be a day that PJ and I could enjoy the last little bit of freedom
 before we are back into the swing of things with school.
 we started the day off with a haircut-
an auspicious start because PJ spent the rest of the day
being defiant and contrary.
He did get to spend the day with his cousins,
 splashing in a wading pool and eating donuts which,
by five-year-old standards,
seems like a pretty good day.
But he was pesty and wearing on my nerves and
 I found myself relieved when I tucked him into bed...
...and than immediately felt guilty for that feeling
and empty thinking about an entire school year stretched out ahead of us.
A school year, by the way, called Kindergarten.
This is the big leagues, folks.
And if this is the big leagues than this summer was his time in the minors.
We sacrificed a summer, our golden time with our only son,
 to spend a summer going to therapy.
I think we made the right decision.
I almost know we made the right decision.
Tomorrow, it will be in the hands of someone else,
 and I am nervous, mistrustful.
But my baby has worked hard this summer and
 he has so many new tools with which to build.
Bring it on.
PJ has grown and stretched again and always despite Autism,
 despite misunderstanding,
 despite the million and five mistakes every day as I try to mother
that subborn, blond, firey soul we created.

Thursday, August 27, 2015

...seems like it's always understood this time of year.

The GIVEAWAY for VIP PASSES to Jenkinson's Boardwalk ends at MIDNIGHT *TONIGHT* (8/27)
Click HERE for your chance to enter- this one is not to be missed!! 

I can kick and scream all I want, but summer is coming to an end.

I have said before that, while I have always loved summer, it has far more magic since I became a mother. As soon as the weather is warm, my adventurous boy likes to drink in everything that summer has in its cup, and watching him do so has been one of my favorite parts of motherhood.

This summer was different. Pete and I made the decision to pass on the summer program offered by our school district (a meager four days a week, two hours a day) in favor of a full-day, much more intensive program that took us through the  entire summer. With PJ's negative behaviors rising (along with our continued difficulty in finding a productive means to address those behaviors via the school system) we knew it was time to find something different. When we finally were able to get PJ set up with a quality behavioral  therapy program, we knew this was a golden opportunity to make some real progress this summer.

At the Camden Children's Garden
The first day we dropped him off, I cried the whole way home. It seemed so strange to be without my Boy. I reconciled this in knowing that we were doing the right thing for him, and that we had reached the now or never point- offer him some intensive therapies while he is still so young or risk the chance that his behaviors pass the point of no return. I knew we had made the right decision, but it was hard. It was so hard to keep that adventurous little Boy from all the things he loves about summer.

Of course, in what has become a recurring theme on this blog, I was wrong. PJ has had an amazing summer, full of all of the fun and adventure I wish for him, and he also made huge strides at his summer program. When I walked in today, he was sitting at the table working with his therapist so beautifully, it took my breath away. Just three weeks ago, he was surfing the ocean waves. His progress reports showed quick, steady improvement and his play date calendar stayed full. His speech has come along in leaps and bounds, and he rode a full-size roller coaster just last week. As it turned out there was room for both growth and adventure this summer, and my baby Boy earned both in spades.

Splash Pad at the Camden Children's Garden
I think about where I was at the start of the summer. I was so sure that Autism was going to rob my son of the summer he deserved. In fact, I had reconciled myself to the idea that we would give up this one summer to ensure that the next ones were everything we wanted for him. But, in what I hope will be one of many moments of grace throughout our lifetime with PJ, we got both and I can not be more thankful.
Swings and Philly Pretzels with cousin Riley

Assateague Island- PJ was not a fan of the fish and other sea life in the bay, LOL! 

Last day of track! 

Above and below: Surfing with the Best Day Foundation at Brick Beach III. An indescribable experience that can only be assessed by the smile on PJ's face! We feel so amazingly blessed that PJ had this opportunity! 

Trampoline at Aunt Shelly's in the golden hour. 

Tuesday, August 25, 2015

If you just realize what I just realized...

I have never been a "girls girl." I imagine that this is due to my crippling self-esteem issues and general social awkwardness, but I have always been one who gravitated towards guy friends. Mind you, the boys really did just want to be friends. There were no secret crushes or any stealthy coveting of my early-20's B-cups. We were just friends.

So fast-forward ten twenty years and into my Facebook messages, where an invitation to a mixer for moms with kids going into Kindergarten sits. It seems harmless, even nice. It's a chance for the moms to meet up and get to know each other. At this young age, it really is up to the parents to facilitate the friendships of our children, so this is a fun, gracious, welcoming way for the host to ensure that everyone gets to know each other. But, for some reason, the invitation all but paralyzed me with anxiety.

In my old age, I have come to appreciate female friendships. I treasure the close friends I have and the fledgling friendships I have embarked on in the past few years. The people that are the closest to my heart are women. My very best friend in the entire world is my sister. I have learned to make connections with women and yet a group of women will render me 1. silent or 2. obnoxious. I find myself too self-conscious to speak or trying so hard I become ridiculous. I'm sure you can imagine what a hit this made me at pre-school pick-up. My presentation is just off and I am left wondering why I am not making connections.

When I received the invite, I quickly messaged another friend to see if she was going. Note- my social awkwardness is always relieved if I feel like I have someone on my side. This particular friend is another of those fledgling friendships- new but with potential. I decided to confess to her that I am often intimidated by other women. Women who are good dressers, who have good jobs, who chat with the other parents with ease. I can't imagine that I would have any gifts to offer a potential interaction and, instead, lapse into one of the two options I mentioned above.

To my surprise, my friend was able to relate. In fact, she let me know that often, the "cool girls" are feeling the same anxieties and social awkwardness that I am, but we'd never know because we have already closed them out.

"I'm a 'cool girl bigot' that way," she stated frankly.

Cool Girl Bigot. Aside from just being a brilliant phrase that I flat-out told her I would steal, I realized that it is also a diagnosis for my issues. I leap beyond my realizations of my own shortcomings and go the extra mile to assume that the "cool girls" would withhold their gifts and rebuke mine. I let scenarios I made up in my own head stunt my chances for great conversations and amazing connections. It's not that I am being rejected, it's that I am doing the rejecting. What the hell?

I have put down a few roots these past years in my quest to have more female friendships. They do what roots should do, grounding me and offering support and nourishment. But now it is time to grow some branches, and I will do so at the home of a fellow Kindergarten mom. I'll bring a bottle of wine and leave the bigotry at home.

Monday, August 24, 2015

Oh when the sun beats down and burns the tar up on the roof...

It's been a while for the blog and I. I know. Bad Blogger {raps wrist with ruler}

 Visit Jenks! Our summer has been full and most nights, I fall on the couch to watch tv, too tired to do much more than wield the remote, much less blog and use my brain. But while my brain might be a little tired, my body has been going, following my son on any adventure he can find and because of that, it's been a full, fun summer.

Last week was no exception as Pete, PJ and I , along with our nephew Robbie, set out to conquer Jenkinson's Boardwalk in Point Pleasant, NJ. We were invited as part of program, in conjunction with my amazing friends at Jersey Moms Blog, to visit the beach and boardwalk as a Jenkinson's Memory Maker. As such, we had the honor of being provided with wristbands that were our ticket to all things Jenks- the beach, the boardwalk, the amusements and more! We didn't get to everything (the curse of a day at the beach with small children!) but we left tired and happy.

We started off at Jenkinson's Aquarium, a small facility located in a cute pink building towards the top of the boardwalk. Home to sea otters, penguins, sharks, and gorgeous tropical birds, the Aquarium dazzled PJ and Robbie. "Look at all the fish on the TV," exclaimed PJ! We had to explain to PJ that the giant glass panes were not televisions but, rather, real-life sea-life swimming before us! Robbie fell in love with a tank full of "Nemos" or clown-fish, and we all enjoyed watching the penguins! We were just in time for a feeding, and the boys gleefully watched the tuxedo-ed cuties vie for first crack at the delicious fishy offerings. My favorite was a tank of colorful, tiny frogs!

After the Aquarium it was time for lunch. At least, I was ready for lunch. The boys were ready to hit the beach but with all of the delicious smells filling the air from the many eateries on the boards, I knew I needed some pizza! We headed to the Pavilion Restaurant and filled up on my favorite- pizza and fries and a huge Diet Coke (for me- no chemicals for the children!). With my pizza craving handled, it was time to head to the beach. The boys jumped right in and didn't leave the ocean until we left a few hours later!

Note: Calling my pizza craving "handled" might be misleading. I could have eaten a full pie all by myself.

After the beach, we made a quick stop to one of the boardwalk Bath Houses to rinse off and change and after we dropped our beach stuff at the car, we scouted out a place for dinner. Thankfully, we didn't have to go far- the Boardwalk Bar and Grill is (as its name suggests) right on the Boardwalk and was the perfect spot to grab some dinner. The kids got chicken nuggets and fries, served in beach buckets, much to their delight! Pete and I considered treating ourselves to an Adult Beverage from the gorgeous bar, but since we were both already tired and were about to get on carnival rides, we passed.

As we headed to Jenkinson's South Amusement Park, it started to rain a bit. It never got heavy, in fact, it made the night even more lovely. The air cooled to perfect amusement park temperatures and when the kids spied a train ride, we were off. Robbie is the less ride-tolerant of the two boys but, despite that, found a number of rides he was willing to try and enjoy, including a ride that allowed him to lay on his belly and "fly" like Superman! PJ, on the other hand, is ride-tolerant enough for both of them and, now that he's reached that magical 42' height requirement has the world at his feet. He rode the Flitzer roller coaster with a huge smile on his face! The sky was turning pink before we noticed how late it was, and we gathered up two very tired little boys to head home.                                                                            

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Tired boys saying "good night" to Jenkinson's!

DISCLOSURE: Jenkinson's Boardwalk provided me with passes that allowed my family and I to attend the beach, Aquarium, and amusements free of charge in exchange for my review of my experience. Although we were given this opportunity free of charge, all opinions shared are my own and are my honest, truthful observations with no coercion or favor to our hosts. 

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!!!!