It didn’t really start out as a secret. It started out as a form of protection. It started out as a way to keep myself and teachers from lowering goals. It started out as a way to keep him whole and to retain the innocence of being just another kid on the block and in the classroom.
We would not let autism define us.
But then it happens. He gets older and you whisper the word to others. You hush the doctors who might say it out loud and change him with those six letters. Those simple six letters are harmless alone but, together, lined up starting with “a” and ending in “m” are some of the most powerful letters there are.
Those six letters can change people and not always for the better. Those six letters can make a parent expect less and make a teacher and a classroom lower standards. Those six letters can make a school district close the doors of the classes the “other” kids use. Those six letters can confine a child to lowered goals and expectations.
So, naturally, wanting my boy to be seen as just another kid, I have sheltered him from the words, the label and the baggage that are carried in those letters when fully assembled. I have spent ten years, making sure my boy was something more than a giant, red letter “A” emblazoned across his shirt.
With, that said, as he has just reached his twelfth birthday, I have also come to understand, I cannot keep hiding the word. It has jumped out on more than one occasion. It has made me fumble and jump myself in order to contain it before it does any damage.
I knew he and I needed to have a conversation but, that morning at my computer, I didn’t know I was going to tell him. It wasn’t something I had planned or spent time choreographing. I had started to wonder, or fret as I sometimes do, over how I would let my son know he is autistic. He is getting older. He is more aware. I knew it was coming and, at some point, I would have that conversation with him. It didn’t need to be immediate. It was more of a “one day” kind of of thing in my planning mind but I knew it was on the horizon. I also knew I wanted it to come from me and not some kid on the playground.
That morning when the moment found me, I had not chosen words yet and certainly had no strategy or back up plans. And, even as it was beginning to happen and I could see it unfolding at my desk, I still had nothing. I thought to myself and wondered, “Is this really happening?” I was nervous, wondered how I would say it but I also got the feeling, what I was being given right then was a God moment. It’s like when someone gives you a freebie and you don’t have to even work for it or create it on your own. A moment of grace and light bestowed upon you directly from God’s own hand that, if you are smart, you should embrace.
I was actually watching this basketball clip about an autistic boy who had been the manager for his school basketball team. I am sure many of you have seen the clip. They’re at a basketball game and the coach tells the boy to suit up. It’s a nice gesture and the boy and his family are thrilled. Then, in a quirky turn of events, not only did the coach have him suit up, he also, in the last four minutes or so of play, puts the boy in the game as a real player. The boy goes in, all smiles, and at first he misses a few shots. But then, he starts making these crazy three point shots.
Like I have said. Many of you have seen it. It is unbelievable. Crazy good stuff. The boy ends up making like twenty points in the last four minutes of the game and the crowd goes absolutely wild. It’s a thrilling moment for me, as a stranger, and I can only imagine how his family and friends felt.
At the time, and in my kitchen, I was preparing a presentation on autism. I wanted to show the other side of autism that displays its magnificence so I was checking some clips. My son, who was eating breakfast in the kitchen, hears the crowd going wild on the computer and asks what it’s about. So, I took a deep breath, embraced the moment and told him it was about a boy who is autistic who does great things.
Then my son asks the question that I have dreaded, waited for, feared, “Really, Mom? What is autistic?”
I have lived for the last ten years with autism as part of our reality but I have not let it crowd us, become us, overtake who we are. It has simply been a point of reference for us. It is spoken about in IEP meetings and with teachers but has not been allowed to define or change the boy. I spent ten years protecting him from the big red “A”.
The moment I had waited for was here. I waited. I feared. Then, I gathered my courage and I spoke.
“It’s when your brain is wired differently and it makes you capable of doing great things. Some really great people like Einstein were autistic.” Yes, I know the jury is still out on whether Einstein really was but, I did not have time to research and split hairs….so I went with it.
And, my boy, as only he can, says without skipping a beat, “Wow, I wish I was autistic. Mom, could I be autistic?”
I could hardly breathe much less think but I took a moment and then, before I can even speak, my son adds, “Hey, Mom, I’m Irish, Norwegian and Native American. Am I autistic too?”
I smiled and I told him, “Yes, my friend, you are Irish, Norwegian, Native American and a little bit autistic.” The boys beams, smiles and like only he can, says, “REALLY? That’s cool mom. I’m autistic.”
I smiled bigger than my face was made to smile and my mouth stretched so far it hurt. The kids were all still in the middle of the getting ready for school routine so I held my tears for later. I held them for the drive home after dropping off kids at school when I could let it all really sink in. It was a God moment. He presented me with an opportunity and, for once, I had the smarts to take hold of it and make it happen. I could not have planned it better. I had no strategy as great as this. Even on a good day, I could not have dreamed this up. It was a chosen moment and and it was perfect. I had struggled over how I would tell him and before I could even construct it, it landed in my lap. The lesson for me, of course, is stop the fretting and really embrace the whole philosophy of “let go and let God”.
I had always wanted him to know who he was, fully, but without making him feel like something was wrong with him. I wanted him to understand who he was without that knowledge somehow making him feel like he was less. Autism has made him such a gift and a blessing and I wanted my words to help him to understand the gift that he is to me and everyone around him. I wanted him to feel like he was more and I had been able to preserve that life for him with the moment that followed the basketball clip. One day I will need to thank Jason McElwain for being so remarkable and his coach for being such a brilliant and courageous, trail blazing man. Both of them provided me with a level of grace I would never have found on my own.
In life, let’s first get this out in the open and admit, there are a lot of people who really love vanilla.
Plain vanilla. No toppings, no swirls, no syrups or hot fudge, no nuts, and, by all means…believe it or not, no whipped cream. That is the way it is. Just vanilla please. That is who they are. They cannot help it. They are not necessarily bad people. They simply have not opened themselves up to the radiant world around them…yet.
Of course I have never been a vanilla girl. I will take chocolate, coffee, mint ‘n’ chip, butter brickle, chocolate triple fudge brownie, mango swirl, you name it. Anything but vanilla for me.
When it comes to life and autism, iridescence is a lot like vanilla. It is not for everyone. Believe it or not, some people just want the vanilla version of children and life. The vanilla people will never quite appreciate anything other than their beloved, simple vanilla. Vanilla people, in their want for conformity and consistency, will never embrace or appreciate the iridescence of autism.
Although some of us adore iridescence and sparkle, others do not and that is okay. Be aware of the vanilla people, know they are out there, know they will never change and just let them go. The non-iridescent-vanilla people will not love the spectrum, challenges, differences or disabilities, nor will they appreciate the crazy wonderful pieces of life a non-vanilla dance can bring. We all know that in order to retain the unique quality that is iridescence, it has to be sparse to be appreciated. Too much is just too much and that is why the vanilla people have their place. They have to be here in order to make the iridescent child so spectacular. If everyone appreciated iridescence, it would probably become common place, it would cease to be unique and would then become, well, vanilla. Thankfully, we are not in that place and vanilla has not taken over. The vanilla people still hold their place, they push iridescence away and that keeps the world in balance.
And, it is good that it is sparse because, truthfully, not everyone could handle complete iridescence. It’s odd, it’s quirky, it’s definitely hard to define and it kind of sparkles indefinitely. Not everyone likes their world all bright and shiny and reflective. It can get old and tiring to see reflective all the time. It truly takes a remarkable person and a savvy eye to appreciate the iridescence of autism. Not everyone chooses it and that is not surprising.
Iridescence is a lot like Autism. When you look at autism head on, it can be overwhelming too. There are a lot of unknowns, it’s scary, it’s hard to know where it will take you. It is so difficult to figure out sometimes that it can make some people want to look away. It can even make some want to walk away all together before they even try to figure it out. Some things are hard to look at head on.
A life with autism can be one of those things.
Sometimes it’s easier if you look at it from an angle with a partial view, one day at a time with deep breaths in between. That is the advice I give most parents when they ask me what they should do. Just breathe and don’t get ahead of yourself. Today, concentrate on today. Tomorrow will take care of itself. Worrying about what might happen next week or next year or six years from now will serve no purpose and will not make anyone’s life more peaceful or more accomplished. If you have plans next week or next month, pencil them in but, otherwise, don’t fret. Just breathe deeply and often.
And, because this is about real life, I have to admit this lesson was a hard one for me to learn. I am by nature a worrier and a fretter. Thankfully, autism and this life have taught me some good life lessons and coping skills. I suggest you practice and learn this lesson with more ease than I did. I can see it in new parents who are just starting their journey and I recognize it is how I used to be. I also know from hard fought experience that all the worrying in the world did not change a thing. Working hard, breathing deeply and taking one step at a time made the real difference in our world. These days, when I feel the squeeze of the anxiety swelling in my chest, I have to stop what I am doing, break it down into small pieces and take a deep breath. I do this because I know that in small pieces I can do anything I set my mind to. But if I let too much crowd me all at once, I certainly get overwhelmed.
So, forget about the vanilla people who don’t see the radiance or appreciate the iridescence. Just breathe deeply, take life’s challenges one day and one single step at a time and know you will get through all of this. Some days you will even get through it with radiance, enthusiasm and great love for the blessings autism has shared with you. Honest. And, just like with iridescence, if you look at it from a different view, a different angle, and if you look close, autism can afford you glimpses of greatness in a magnitude that hasn’t yet been seen.
That is how I feel some days. (Of course, not on the fall apart days because the fall apart days WIPE ME OUT.)
Some days, his autism is like an iridescent radiance…he literally shines in my life and the radiance sparkles before my eyes. Sometimes the radiance is bright enough to let me see just a glimmer of what he is seeing and that is the essence of the joy and love he shares with me. That is exactly why I love autism so much. It changes me and it thrills me and, some days I am able to breathe in his radiant iridescence and it makes me momentarily glow inside too. I suppose it can be said that my boy brought “glow” to my life.
And, like with iridescence, as the light changes and the child grows, autism grows and changes as well. Not every moment is brightened with iridescence but that’s okay too. Embrace the ones that sparkle and know on the fall apart days that the sparkle will come back and is probably just around the corner. I am so thankful for the iridescence he sprinkles into my life…the one thing I never knew I wanted but am so thankful I have.
Not everyday with autism is a good day. It’s just that way. We have our ups and down. Don’t get me wrong…my boy has his strong points. He is a funny guy. He is sensitive, he loves snakes and spiders, he is good at electronics, a guru with Legos, a wiz at Nintendo, an ace with the IPod he saved up for and the boy has a memory like a steel trap when it comes to movies and directors and the voices of actors from animated flicks. He is good at lots of things.
That said, he is not so hot in the outdoor arena. Getting hot and sweaty on purpose? No thank you.
Though we do have the bug area conquered, the great outdoors, playing sports, being competitive, playing with other kids socially is just not our long suit. It is who we are. As a parent, I have tried to reel in the electronics and force the outdoor adventures and, I will admit, some days are better than others. I find that bartering works quite well. Electronics become incentives to be earned through good behavior while outdoor activities become the “alternative” activity when the good choices are not embraced at school to earn electronic minutes.
So, under the heading of Marilyn’s quote, “Some things fall apart so better things can fall together,” Monday was one of those “fall aparts.”
It goes like this…On Monday, autism won.
We have fought hard to be where we are…in regular education class, full time, with no pull out or resource minutes. I will say it has not been easy. We did not start out there. We started out in special ed, full time and with no one urging us to set our goals on anything but special ed. There have also been some choice moments, after leaving special ed, when administrators wanted us back there but, we persevered and we have remained steadfast in regular ed. I’ll give you the short version for now and just say last year was not a very good year for us academically, socially or behaviorally but, as we do, we hung in there. This year, after some major battling, has been better and most days this year have even, dare i say it out loud, been quite pleasant. But, as it is with autism, some days are just better than others.
Yesterday was one of the less better days.
Math class was our nemesis yesterday. In math, my boy chose to not show his work on paper (because he does it in his head instead and then ignores the teachers directives to show how he got his answer), he then chose to read his Garfield book during math after the teacher asked him to put it away, and after finally putting the reading book away he dawdled around another fifteen minutes out of his seat, blowing his nose and sharpening his pencil. To say the least, his teacher was NOT impressed.
Let me also mention, his teacher is a fabulous man and an amazing teacher so when I finally get an email home…I knew my boy had pushed a whole load of buttons on the poor man. We own those moments and I try hard to find incentives to turn our behavior back around.
And, so it went…and when my boy got home we had the obligatory talk about why he would not be visiting any of his electronic friends until he made some better choices. There have been moments when those conversation have not gone well but Monday went fairly smoothly. No melt downs, no tantrums, no fits. He knew it was coming and, as he has matured with age, he took responsibility for what he had done. It has not always been that way so after I held my breath, I jumped for joy and smiled from ear to ear.
The moment then presented itself where the boy would have to fill his non electronic time with some unpreferred alternative activity which is sometimes a bit of a challenge. In warmer weather, the pool is a no brainer since he is a good swimmer. All those Medina Rec Center pool hours on snowy days when he was three to enhance his verbal abilities paid off in spades with great swimming abilities. It is starting to warm up at our house and Monday was indeed sunny but the pool water is no where near warm enough to put a body into.
As he and I finished our conversation, his little brother ran out the door to join the fourth grade group of neighborhood boys who had assembled on our street and he quickly rode off on his bike as other typical kids would do on a sunny day. And, then, as I pondered what we would do next, my sixth grade autism spectrum son, as nonchalantly and out of character as can be, asks me, “Can I ride my bike, Mom?”
I had to catch my breath and remember my words, as well as hide my shock, when I answered, “You betcha, buddy. Hop on.” I tried to pretend as though I was not concerned as I watched him grab his unused helmet, hop on the yellow Hummer bicycle that his Poppy bought him four years ago that is still in mint condition, and roll his wheels into the street with the other boys his brother goes to school with. And, just as normal as can be, he began to ride up and down the street with eight other children as though it was just another day on the street with the neighborhood kids. And, thankfully, the other kids could not feel my nervousness and they simply rode along side their friend’s brother as though it was just another day in the neighborhood.
I took a deep breath and I sat back down in my drive way chair and I tried not to fall into one of those mom puddle of tears. I tried to be just another mom on the street watching her kids play in the sunshine. Inside I knew this was a God moment. I knew it was a gift. It was one of those moments that I would always cherish. It was one of those days when it all had to fall apart so something better could fall together….and fall together it did. And, truthfully, if you get too stuck in the falling apart part, it’s hard to allow the better stuff to fall together. Autism is like that for us. There are moments when the world seems dark and if you get too mired down in the muck you don’t allow yourself to notice the ray of sunshine that is forming on your own horizon. There are going to be fall apart days but they are just another avenue or window into something else better and more brilliant that is trying to fall together.
Today at school was a good day and the boy earned his electronics. The really terrific thing is that even though he earned the good stuff, he still came home and immediately joined his brother and the neighborhood boys on bikes in the street. I am not sure if this will hold out. I do not delude myself but I sure am enjoying watching him blossom socially and physically for now. I realize he is still an electronics guru but I appreciate that he is enjoying this new experience. I am also trying to be thankful for the fall apart days and remember that the dark moments have light too.