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.
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.
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.
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.
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.
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.
Out to breakfast while visiting family last week. He ate all his pancakes, but, just like Dorothy, Ryan believes there is "no place like home".
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