Milestone birthdays. Some we can't wait for, counting down the days on a calendar until the big day finally arrives, and some we hide from, lie about, and completely ignore. Remember in college, hating all your friends who had fall birthdays and went right from their Poly Sci class to happy hour while you went back to your apartment and watched Seinfeld instead? Wondering why your parents clearly preferred "alone time" in August than in January. And to add just a little salt from your under age drinking tequila shot to your, "I wish I would have born in October" wound, turning 21 in May, a week after summer breaks starts, is one of the greatest injustices of the college world. I specifically remember the May that I turned 21. After I gave my parents a stern lecture on giving birth to, not one, but, three girls in the month of May and how their insensitivity gravely impacted their daughters' 21st birthday celebrations, I recall wondering, what was left? I mean, isn't 21 the pinnacle of milestone birthdays?
Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?".
Those happily celebrated milestone birthdays belong to someone else now, since I have decided not to have any more birthdays (I will still accept a cake or Zappos gift card on May 19th, but, just because you love me, nothing else). A very, very, very long time ago, I couldn't wait to turn 13 and officially become a teenager. Then at 16 I could finally drive a car, no more mom taxi needed. At, 18, "woohoo I'm finally an adult" and I can vote (AWEnestly, voting wasn't nearly as exciting as getting into R rated movies). Then the pinnacle of all milestone birthdays...21, I'm officially legal. Not that I would have ever dreamed of driving a car, sneaking into an R rated movie, or drinking a beer before those milestone birthdays allowed me to do so....ohhhh noooo, not me. All those milestones, all those celebrations, all those moments to look forward to, then 21 hit, and I went, "ok, now what?".
Whether it was 13, 16, 18, or 21, once you got "bigger" you realized in many ways, being "little" wasn't so bad after all. Getting bigger means being more responsible and hearing your parents nag you about, "Well, now that you are bigger, we expect you to act your age, be responsible, hold yourself accountable, blah, blah, blah." Ultimately, the bigger your get, the more that is expected from you. What a drag. If you only knew how good you had it when your were little.
For example, turning 16, and being able to drive gives a teenager a sense of freedom they never had before, but, the downside to that freedom comes the lectures and the nagging from good ole' mom and dad. Seat belt safety, drinking and driving (even though of course at 16 they would never touch a drop of alcohol), texting while driving (not a problem in my day) lectures occur daily and each lecture is followed with the grave warning that failing to heed any of these naggings could catastrophically end your life or someone else's life. Jeez, 15 sure was a lot less lecturery (new word for teenagers only) and a lot less "I could die at any moment behind the wheel" scary. Then there is the magical milestone of turning 18 which makes you "bigger", and an official adult, but, with adulthood comes the realization that one major screw up means goodbye "juvy", hello Big House. And although turning 21 brings a whole new meaning to the word bigger...bigger parties, bigger clubs, bigger dating pool, 21 also means that the fun and partying college days are quickly coming to a close and the "real world" is slowly looming over the horizon. Mom and dad might still lecture and nag, but, now you own the laundry, the bills and the cooking. Big ain't all it's cracked up to be.
I don't know when the change comes, when we realize life was easier when we weren't so big. Was it after our first hideous hangover from one too many tequila shots? Was it our first real job when it finally dawned on us that there were no more summer's "off"? Was it after life's first big disappointment...a job that didn't happen....a relationship that didn't happen....a dream that didn't happen? Regardless of when or why, at some point in time, we have all thought, "Wow, if I could just go back in time so I could slap my younger self, and realize how good I had it...before I got big." Although I wouldn't want to go back permanently, (especially not to middle school), I would love a quick trip every now and then, to be able to fully appreciate the comfort, the security and the ease of being little. I mean, if Tom Hanks got to do it, why shouldn't I?
David Moscow in Big, 20th Century Fox The movie that turned Tom Hanks into an official movie star, also turned him from a child to a man in the movie Big. Just like the real world (dripping sarcasm), when being big got too hard, conveniently, Hanks, got to be little again. In the movie Big, Hanks played Josh Baskin, a boy who becomes fed up with the injustices of childhood and longs to become big. Josh finds a magic Zoltar fortune telling machine and with the pull of a lever, wishes to be big, and overnight, Zoltar grants Josh his wish. The next morning, Josh was big...on the outside. He was over 6 feet tall, he had facial hair, and his voice was deeper, but, on the inside, Josh was still 13 trying to navigate a very grown up world, a world he didn't understand. Josh couldn't tell his parents what happened, so, he was on his own in the big world, just like he wanted...or so he thought. It didn't take Josh long to realize that being big, isn't all it's cracked up to be, so he desperately tries to find the magic Zoltar machine in order to become little again. Oh, if it were that easy Zoltar.
Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside...
Here is a scene from the movie Big, where it is very apparent, that Josh is not so big on the inside...
I swear, some days I think Ryan must have pulled the lever on the Zoltar machine, because in the blink of an eye, he too has become big. As I listen to Ryan, scripting in his bedroom with his best British accent, his voice deepening each and every day, I sometimes freak out, ready to dial 911 and report that some British man has broken into my house and is playing Minecraft in my son's bedroom. As I approach Ryan's bedroom, baseball bat in hand ready to take on this would be British intruder, I don't find a stranger, I only find my little boy who has gotten big with just a pull of the Zoltar lever. How did he grow up so fast? Where did my little boy go? What will his future hold?
Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own.
Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big.
Being big, certainly has it's advantages. The horrors of potty training are long behind us (thank you God), as are the battles over haircuts and sandals, but, new struggles, new quirks, have taken their place. Some are bigger, some are not, but, just because Ryan is bigger, and in many ways "better" does not mean that autism was left behind in the toddler years. As we are still navigating the waters of adolescents and quickly approaching the waves of teens, I worry about the tsunami of adulthood. Getting big is hard. Getting big on the outside, yet staying little, naive, and confused on the inside, is even harder. Just ask Josh Baskin. In Big he recognized that his wish to be big, was nothing but, a big mistake. Still a child inside, Josh didn't understand this new world filled with grown ups and grown up problems. Although the troubles that plagued Josh when he was little went away, Josh discovered that being big, had troubles of it's own.
Similarly, a child with an ASD may have different struggles when they become an adult, but, getting bigger doesn't mean autism magically disappears. Some difficulties get littler, some difficulties get bigger, and some remain the same. With new expectations, new adult rules, and new adult consequences, it's easy to see why some of these adults would like to go back to being little. Unlike the movies though, children living with an ASD are not able to search out a Zoltar machine, pull a lever and wish to be little again. Once big, always big, yet, we hear so little about what happens when children with an ASD become big.
The faces of Autism Awareness belong to those who are little. During the month of April, when Autism Awareness is celebrated, most of the faces you will see belong to young children and the occasional teenagers. Rarely, will you see a photo of a grown man or woman living with autism. A picture of a grown man is not as appealing to the hearts of strangers as a photo of little boy with big blue eyes. When you see the little boy and his beautiful, innocent blue eyes, you want to "help" him, you want to "save" him, you want to "accept' him, you want people to be "aware" of him, but, the grown man, you quickly "disregard" him, even though he once was the boy with the big, blue eyes. After all, this adult, is big, he is a grown up. He should be able to have a handle on his autism by now with all the years of therapy and support he had as a child, right? Wrong. Autism does not magically go away at the age of 18 or 21. The problems, the struggles may become different, but, for some, getting big is the most difficult challenge of all.
The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available.
The most recent study conducted by the Centers for Disease Control, lists that 1 in 68 children or 1 in 42 boys and 1 in 189 girls now have an Autism Spectrum Disorder. These children, these boys, these girls, will get big and when they do, there is very little support for them. According to a study completed by the Pennsylvania Autism Services Bureau, "If your child is 3 now, we estimate that there will be 54,486 adults with autism in PA by the time he is 21" and "As the person gets older, the availability of services decreases". There are so few services available for adults with an ASD. The waiting lists for adult services may run hundreds of people deep and many years of waiting. Once that magical milestone age of 21 hits, the only support many of these "children" have, are from their parents and when these parents are helping their big kid make it in the big world, many spend a great deal of time worrying about what will happen to their big kid once they are gone. There is no magic Zoltar machine to change these adults from big to little, when supports may not have been in abundance, but, at least support in the educational system was available.
Tom Hanks, in Big. Our state and federal government has to be the Zoltar for these kids who are now big. Pulling a lever and making a wish isn't going to cut it. Programs, services and funding needs to begin now. If waiting lists for adult services are in the hundreds when the rates of an ASD diagnosis for these adults was 1 in 330, then how long will the wait be in twenty years? If getting services for adults living with an ASD were as easy as pulling a lever on a Zoltar machine on a Jersey shore boardwalk, there would be a line across the entire state of New Jersey waiting to pull that lever. It's not that easy folks.
For most of us, when we turned 21, our biggest concern was which bar had the cheapest pitchers of beer and no cover charge. Sure, maybe at 21, we had no idea what we wanted to be when we grew up, but, regardless of our path, we knew, that like it or not, one day we would be out on our own. Some of us, to the dismay of our parents (love you Mom and Dad) took a little longer than others. For parents loving a grown child with an ASD, it's not always that simple. Some big kids with an ASD are able to go to college, find a job and live on their own with little support, but, many, are not and that is why it is so important to change our perspective, change our view, and change what and who we see, when we hear the word autism.
Just keep in mind every gorgeous little boy you see promoting autism awareness this month will one day have facial hair, a deep voice, and possibly tower over you. Do your part in raising autism awareness this month and every month, by remembering that when you see a face like this...
....that one day that face will look more like this....
These faces, big or little, need your awareness, your advocacy, your understanding, but, mostly your acceptance. We have come a long way in advocating for children with an ASD, but, we must not forget the faces that we don't see. For every parent loving a child, big or little, with an ASD, our hope is that one day there will not be a need for a magic Zoltar machine to grant wishes, because with the right support, the right services, these little kids, who will one day become big, will be able to make their own wishes come true.
These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter.
These big kids with an ASD may not worry about which bar to hit at exactly 12:00AM on their 21st birthday the way you did, but, it is still a day that each child and their family should be able to celebrate and not worry, "Now what?". Chances are, the day after their 21st birthday, these big kids...these adults living with an ASD...who are smarter than most of us neurotypicals, won't wake up wondering what crawled in their mouth and died, who the he** put a vice on their head while they were sleeping and where they can find the closest Zoltar machine to make them 6 years old again. For most of us, bigger doesn't mean smarter.
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