So, you finally heard it. The word you may have been both searching for and hiding from. Autism. And with one six letter word, your world tilts on its axis and you tilt with it.

Been there. Done that.

It’s been 12 years since my son was diagnosed with autism. That’s twelve years of doing the best I can to right both his world and mine, not by disregarding his diagnosis, trying to “fix him” or make him be someone he is not, but, by learning, advocating and sadly, screwing up. I’m still apologizing for some of my mistakes.

You will screw up. You will second guess yourself. You will make huge progress then with one FB pic of your kid not making the cut to a party, a dance, or some other social event, you will tumble backwards again. You are human. But even with all your human frailty, you will pick yourself up, dust yourself off and move forward again because your kid needs you to be upright and moving forward. Nothing good comes from looking back.

In those weeks when I struggled to get up, and had no idea where to go once I did pick myself up and brush myself off, I wish I would have had someone to guide me. Someone who had been there, done that. Someone with just a few hints on how to help me help my son in order to try and "right" our world again. Someone with a few words of wisdom.

For those of you looking for such wisdom, here are a few words that may not make you wiser, but, might help you feel more centered:

Breathe. Holding your breath and hoping this diagnosis was wrong and that if you just ignore it, the world will be as you expected once again will cause you to turn blue and pass out. Your son or daughter needs you to be upright and breathing.

Look for parents who have been there, done that. Whether it’s a support group or a friend of a friend, look for support. Better yet, look to an individual with autism. Who better to educate you about autism?

Find your person. You will need one. Someone you can share your child’s triumphs and joys and your progress and setbacks. Find your person and hold them tight.

Care for your child AND for you. There is so much to learn, so many appointments, specialists, therapies and IEP meetings. Don’t forget when you are busy taking care of everything and everyone, to include yourself on the list.

Learn everything you can about autism then tweak what you have learned and personalize it for your son or daughter. Just like neurotypicals, there is no one size fits all for autism.

See your child. I mean really, truly see them. Don’t look at your son or daughter as a collective disorder, see them for the unique individual that they are.

Stop Google searching. In fact, run like hell away from it. Your child is not there. Don’t try and find them on the internet. They are right in front of you. Please don't try and find your son or daughter somewhere else. Let them guide you.

Accept your child for who they are, embrace them, love them, celebrate them so that they will celebrate who they are too.

Remember you are human. You will help your son or daughter feel safe, happy and accepted, but, you will make mistakes, don't belabor them. It's ok, your child will forgive you as long as you learn from that mistake and forgive yourself.

Advocate for your child. No one knows him/her better than you do, however, as they get older, if possible, help them gain the skills to advocate for themselves. 

Laugh often, laugh hard. Many things will throw your world off it's axis, the world is a crazy, spinning, unpredictable place, so when you fall down, stand back up, brush yourself off, laugh a little at your stumble and move forward. Your child is watching you and you need to show them that autism is not bad or less, it's just different and different is not the end of the world, in fact, it's just the beginning of a new one.

A recent trip back to my childhood hometown for a baseball tournament, unearthed a slew of memories that I had not recalled in quite some time. Isn't it funny how a certain place, a certain smell, or a certain sound can transport you back in time? Perhaps some of those memories are best repressed in the deep recesses of your mind, while others, make you smile and long for days gone by. As I willingly shared many childhood moments during my drive down Memory Lane with my three kids, I found out my kids wished that most of my childhood memories remained buried along with how to multiply and divide fractions, in a place forever lost, never to be exhumed again. 

As the kids and I drove past one memory triggering landmark to the next, I would giddily shout out, "Look kids, that's where Mommy and her friends would sneak out of the pool at night and get into trouble!". Then as I swerved slightly off the road in a childhood flashback, "Oh, and that road right there is where we would go to kiss boys.". As I almost missed a stop sign, "Hey kids, put down your iPads, iPhones and iPods and look just past those trees is where we would go to rumble with other girls." (Kyle almost vomited that I said "rumble".). As we quickly approached out destination, "Check out that building right there, that's where Mommy and her friends use to go and listen to bands and go dancing.". My kids were not impressed, in fact they were mortified. 

Kyle tweeted, "Driving through my mom's town where she grew up and she showed us where she made out with boys." Ryan, while covering his ears, shouted, "Please stop talking, you are burning my ears with your inappropriate childhood!". Emma, who was the only one not embarrassed by my lack of filter sharing, was most intrigued by where I went to dance and the fact that I did dance. Poor innocent thing, was picturing her young, wrinkle free mommy wearing a tutu and a leotard while dancing across a stage like a sugar plumb fairy in The Nutcracker, not like a head banging groupie with big 80's hair wearing a black unitard and cut off Levi's. She did get the stage thing right, however, in her vision, I'm sure she didn't see the bouncers tossing me off the stage as I tried to grab the microphone.

I have always loved a good song to dance to...back when I was young and even today. Just a couple of weeks ago, a good ole' 80's Aerosmith tune came on Pandora and without missing a beat, I got my groove on in the kitchen horrifying Kyle, once again (the joy I feel embarrassing my teenage son is indescribable), and pinching a nerve in my no longer 21 year old neck. All those years of head banging has done quite a number on my cervical spine, so I grabbed the Aleve and kept on dancing. Regardless of age and the amount of damage to my C2 vertebrae, I still love to dance, but, like any good 80's/90's headbanging dancer, you want to mix up the music, hear a different song. Some songs, however, people like to play over and over again, no matter how many times you have tried to get them to change the music, feel a different beat, it always ends up being the same old song and dance.

Last weekend, as I danced down Memory Lane, Ryan wanted to turn the van around, due in part to my "inappropriate childhood", but, also because once the road trip is over, Ryan is ready to head back home. Ryan loves traveling to see family and friends, but, upon arrival he struggles outside his comfort zone. Kyle's first baseball game was at the park where I swam at the public pool during my middle school and high school years. As I sat back quietly looking around and regressing, Ryan sat next to me quietly (at first) and struggling.

It was hot and sunny and the only place that offered shade was underneath a pavilion where all the fans from both teams were sitting, yelling, cheering, and clapping for their team. In other words, poor Ryan thought while Mom was so busy driving down Memory Lane, she must have missed a turn and drove him right to Hell. 

Too much heat, too much sun, too much noise, too many people and two wasp sightings were already taxing my boy, then an accidental Powerade spill all over his shirt and shorts, just about threw him over the edge. Ryan wanted his exact same shorts and shirt dried immediately, he wanted the game to end, and he wanted his extended family, who came to watch the game and who love him to pieces, to stop trying to make small talk. He became angry, cantankerous, and withdrawn. My trip down Memory Lane came to a screeching halt as I quickly made a U-turn onto Present Street.

With all four of Ryan's 80 year old grandparents at the game, Ryan refused to give up his chair to one of them. He ignored the questions, suggestions, and hopefully, the stares, judgement, and remarks as he moaned and whined for most of the 7 innings. For friends and family who don't see Ryan often and who don't "get him" or get Autism, some believe that Ryan has "gotten worse". Those same people believe Ryan's behavior is a direct result of not enough discipline and "spoiling him", in other words, poor parenting. As his parents, if we just "grabbed him by the shirt collar and made him move out of that chair", Ryan's autism, his sensory overload, his stubborn behavior, and his struggle with communication would disappear as quickly as my headbanging dancing days. 

For friends, family and baseball fans who don't "see" Ryan and who don't know him well, they don't see that the comfort of the chair he always sits in, regardless if his 83 year old grandfather does not have a chair, is the one familiar thing that feels like home to him in a strange place filled with sun, heat, wasps, shouty baseball fans, and wet, sticky Powerade. This chair is the one thing Ryan can count on not to disrupt his routine and make an already taxed out, overloaded sensory system, even worse. People who don't see Ryan believe he should not be catered to with special chairs, special routines, special food requests, special brands and special excuses because they believe Ryan will "get over it", "outgrow it" and "eat when he is hungry". 

No matter how hard Dan and I try to educate, advocate, and explain how important it is for people who don't see Ryan to change their way of thinking, to see the world through his eyes instead of their own, to finally change the music, it's the same old song and dance. And even after all these years of dancing, my feet still get sore, my heart still gets heavy and my soul still gets weary as I desperately long for people to play a new song.

I have heard from many other parents loving a child with an ASD over the years that they too get tired of the same old song dance. They get so frustrated with family members and friends who just don't get it. People who judge instead of understand. People who criticize instead of support. People who blame instead of accept. These are the same folks who blame sensory overloaded outbursts on lack of discipline. The ones who blame picky eaters on parents who spoil them. The ones who think Ryan's struggle to communicate is an act of defiance. The ones who compare a child with an ASD to a neurotypical child and who don't understand why your child is so stubborn, argumentative, bad, (insert any negative word here), and why Little Johnny is so good. The ones who are so quick to judge, so quick to disregard and so quick to blame. The ones who are the first to say, "It must be the parents fault.".

I try to understand, particularly for the older generation, that autism didn't always exist, but, neither did rock and roll, headbanging, hip thrusting and Elvis, yet over time these strange new ways, although still misunderstood by some, have been accepted by many. I wonder if Elvis' mom felt the judgmental stares of a generation boring through her as kids across the world started pelvic thrusting on the dance floor. Like any mom, I bet Mrs. Presley's shoulders were big enough to bear it. Regardless of the size of our shoulders, the weight of judgement and misunderstanding is still incredibly heavy.

In order to alleviate some of this misunderstanding, there are many websites where parents can get business cards made that say "My Child has Autism" so if their child is struggling they can hand these cards out to the judging eyes of others. I understand why parents feel they need such a card, but, it makes me sad that such a card is necessary. When a two year old is having a meltdown at the check out line in Target because she can't have the toy that is purposely placed directly at child eye level so you will buy said toy to avoid said meltdown (retailers are such schemers), the mother doesn't need a card which says, "My Child has the Terrible Twos" that she feels compelled to hand to the shopper behind her rolling her eyes at such a "spoiled" child.

My days of dancing on the stage (and subsequently being tossed off by the bouncers) may have come to an end due to my unitard and Levi's no longer fitting me and the arthritis forming in my old headbanger neck, but, my days of educating, advocating, and supporting my son and kids like him have only just begun. I will continue to dance in my kitchen where I can quickly find the Aleve and I will continue to advocate for children and families living with Autism in the hope that one day, a My Child has Autism card won't be necessary. 

I hope that in time, for those folks who insist on continually dancing to the same old song, over and over again, that they will at the very least, one day change their tune and that the judgments, the stares, and the misunderstandings will disappear as quickly as my 1990's big hair, headbanging, dancing days. The song they hear, is truly making them miss out on the beauty of the dance.

When I was a kid, I used to occasionally put aside the Lucky Charms and opt for a bowl of Wheaties because just like I believed Lucky Charms were "magically delicious", I also believed that Wheaties was "The Breakfast of Champions". Who doesn't want to trade in some marshmallows and a leprechaun in order to be a champion? Back in my younger days, Misty May-Treanor was not on the front of the Wheaties Box because quite frankly, Misty wasn't even born yet (ouch). No, back in the old days, Bruce Jenner held the coveted Wheaties Box Champion Title.  Oh Bruce, Bruce, Bruce, times they have a-changed. The 1976 decathlon Gold Medalist Bruce Jenner, was most certainly a champion and worthy of a Wheaties box cover, but, the Bruce Jenner of today, well, suffice it to say, Wheaties may want their box back. Poor Bruce, he got so caught up with those Kardashians and all that plastic surgery....bad plastic surgery, that I wonder if General Mills has bought all the Bruce Jenner Wheaties off of eBay to cover their champion idolizing tracks.

For some reason, when I hear the word "champion", I almost automatically think champion (noun), and picture an athlete (not Bruce Jenner...sorry Bruce) on a podium being given a trophy or medal. According to Webster, the definition of THAT champion is "someone or something that has won a contest or competition especially in sports." Obviously, in 1976, Bruce deserved to be on The Breakfast of Champions box, after all, he was an Olympic Gold Medalist. The definition of the verb champion, is never on the front of the box, heck this type of champion isn't even on the side or the back of the box, which incidentally is where champion's photos were placed prior to 1958 (A little Wheaties trivia that could one day make you a champion (noun) on Jeopardy. You're welcome). Champion (verb)  is "a person who fights or argues for a cause on behalf of someone else". This type of champion (verb) may be outspoken, may fight, argue and advocate for someone they believe in, but, these champions never make it on the front of the Wheaties box, preferring to allow the champion (noun) they are championing, to remain front and center.

In honor of Autism Awareness Month, today's blog is for all the champions who don't make it to the front of the Wheaties box, but, who are no less a champion than an Olympic Gold Medalist. These champions of children and adults living with an Autism Spectrum Disorder, are mothers, fathers, brothers, sisters, grandparents, teachers, and therapists. They educate, advocate, and support the belief of "different, not less". Because of their love, because of their commitment, because of their desire to see their child, sibling, grandchild, or student "win", these champions (verb)  have helped create champions (noun). Just like an Olympic Gold Medalist, these champions work tirelessly in order to make sure their son or daughter stands on that podium. They "fight or argue on behalf" of their champion who may one day be on the front of the Wheaties box. They are the champion (verb)...the fighter...the coach...and the voice...that helps create a champion (noun).

It would be delightful if someday Wheaties would have an autism champion (verb) on the front of their box, but, chances are, that won't happen. So, in order to make up for General Mills' lapse in judgement, I want to make sure the champions championing autism awareness are visible today. These fighters, these tigers, are not roaring because they want to be difficult, these champions (verb) are roaring because they need to be heard since they are "fighting on behalf of someone else"...their child. If they don't roar, then who will? 

Until I began championing my champion, I was scared, beaten down by The A Word and my cohorts, Denial and Clueless, and I had no idea what I was doing. I worried more about other people's impressions than what was right for my son. Now I will fight, champion, advocate and roar when I need to, because in order for my son to become a champion (noun), he needs a champion (verb). Most days I don't have to tie on my boxing gloves. Most days people are aware that what every person, with or without an ASD, wants is ACCEPTANCE. The month of April is about Autism Awareness and Autism Acceptance. So, today I am championing for all the champions (verb) loving a child with an ASD. Here are a few examples of moments that are front of the Wheaties box worthy:

For those folks in the mall who may be out looking for spring sandals for your child, we want you to know that the meltdown in the shoe store is not meant to disrupt your shopping experience or make you feel uncomfortable, but, the lights, the noise and the smell of the shoe store for our child is too much. Our kids also wear shoes and we champions have to shop for shoes and put them on our kids feet.

For the school administrators who are tired of words like FAPE (Free Appropriate Public Education), IDEA (Individuals with Disabilities Education Act), and IEP (Individualized Education Plan),  and who often believe that autism is "the flavor of the month", we are not trying to make your job harder. Our kids need an education. We champions make sure they get it.

To the insurance companies (whom AWEnestly, I have NO sympathy for), who don't understand that a trip to the dentist is like a trip to Hades for our kids, we are not trying to harass you with our repeated phone calls or get your fired when we ask to speak to your supervisor. We need the right code for the right surgical center so our child can get a cavity filled without fire and brimstone raining down on them in the dental chair. Our kids need good dental hygiene, and we champions will walk through fire to ensure you pay for some of it (then curse all insurance companies to Hades when you fail to pay a cent).

We are the voice, the fighter, the educator, and the tiger. We champion for our kids whose communication struggles makes it easier for them to remain silent. We champion for our kids who hate the feel of leather boxing gloves. We champion for our kids who cringe at the sound of a deafening roar. We will continue to argue, to fight, to walk through fire in order to champion our champions, and even though you may never see our face on the front of the Wheaties box, I promise you will always hear us ROAR.